What? Me Worry?

Yearly update

2011-12-03T09:10:00.014-06:00

Honestly, I did not mean to let a year go by before updating. I was busy living my life, and did not have much to say about cancer.

Everything has been going well this year! My appointments through May 2011, showed my CA125 as stable and nothing suspicious was noted during my doctors appointments.

Fast forward to late September. My CA125 jumped from 14 up to 20 which was still in the so-called 'normal' range. However, my CA125 has never been a great indicator for me. I knew then that something was wrong. The doctor also 'felt' something during my exam, and ordered a CT scan right away. The scan showed that the cancer was back - and was all throughout my abdomen. Some of the larger tumors were identified in/on the colon, spleen, liver, omental stub, and pelvic area.

The thing about having recurrent cancer - it's like riding a bike. We found ourselves getting right back into the flow and rhythm of it. My favorite husband (FH) and I took a moment to process everything, and then got down to the important discussions with my doctor. She said that I would be a very good candidate for HIPEC (surgery with heated interperitoneal chemotherapy). The surgery included another full de-bulking (removal of all visible cancer) and then heated chemotherapy pumped throughout my abdomen for 90-120 minutes. The combination of the heat and the chemotherapy (Mitomycin-C) is supposed to help kill and sensitize the cancer cells.

My FH and I had discussed HIPEC in the past, and knew that was something we were interested in trying. So, I had the surgery on Monday, October 17. It was a 12 hour surgery. They removed my sigmoid colon, spleen, gall bladder, appendix, omentum, and assorted tumors throughout my pelvic area, and on my liver. Oh - they also removed that plastic tube that remained from the 'deportation' discussed in my last post!

I was in Intensive Care Unit (ICU) for two days following the surgery. They removed the tracheal tube on Tuesday. I was so weak, and felt like I had been hit by a truck, but the drugs helped :) I had a catheter, a nasogastric (NG) tube, and multiple tubes entering and departing my body. I started feeling better on Wednesday once they got me up to walk. No food or drink (because of the NG tube), but I didn't care. I wasn't hungry.

Once they removed the NG tube and catheter on Friday - I felt even better. They started me on clear liquids Saturday, non-clear (pudding, cream soups) on Monday, and solid food on Tuesday night. I was healing well, and we were on the fast track to get out of there on Thursday or Friday!! (cue music indicative of impending doom..... :) )

My temperature started going up and they found out I had a blood infection, from my port (the implant in my chest that is used for chemotherapy infusion). They removed my port on Wednesday night, and put me on IV antibiotics. Thankfully, that cleared the infection right up.

I was discharged on Saturday - 12 days after surgery. I took the following three weeks off of work. I went back to work the week of Thanksgiving, which really helped me heal faster. I need to feel useful - and I sure wasn't useful during my stint at home.

Yesterday, I got my new port installed (short surgery), and started chemotherapy. I am on Alimta (Pemetrexed), which is supposed to be mild, with few side effects. The way I understand it, Alimta inhibits the action of 3 enzymes that are needed for cancer growth. The infusion didn't take long.

I have to take folic acid and get a vitamin B-12 shot. I also have to have lab work weekly (which I can do nearby home - and they'll fax the results) to ensure my blood counts remain good. They gave me anti-nausea medicine too which I'll take for a few days.

Emotionally, we are doing good. I feel that I am at the right place for treatment and that I am doing the right thing to get more quality time. I'll fight as long as it makes sense for me to fight.

So - that is what has been happening with me (at least as far as the 'cancer' portion of my life is concerned)! How are all of YOU doing?

PS I may not update frequently, but I will update soon if I have any side effects or issues with Alimta.

De-ported (somewhat)

2010-11-13T14:48:00.004-06:00

Well, I have been lax again in updating. Oops! :)

Two weeks ago I had a scan and appointment. Still nothing on the scan that is definitively cancer!! Yay! They did see a 'shadowy' area where my trachea splits - that my doc thought was because of a recent cold/allergies. She said there are a bunch of lymph nodes there that could be swollen. She said that she could not see what the radiologist was referring to, when she looked at the scan. Anyway - I am not worried, and she wasn't either. It is something we will watch, but not something that will cause me to lose any sleep.

We also talked about cutting back on the CT scans. I have been worried lately, about all the radiation I'm getting from them. My doctor said that she would be fine with cutting them back to twice a year. She said we can just use my CA125 and HE4 blood tests to monitor, as well as my own symptoms (or lack thereof). I'll still see her every three months, but only scanned every 6.

Yesterday I had my interperitoneal port removed. The port was located on my ribcage, and the tube was anchored to an area just above my liver. I didn't think that I would be as SORE as I am today. I actually took some Vicodin (prescribed) last night for the pain - and I try to avoid that drug. It gives me crazy dreams.

My poor favorite husband - they called him from the waiting room and said that the doctor wanted to talk to him. He was scared that I had died on the operating table, or even that they found more cancer... Luckily - they just needed to tell him that they could not get the tubing out of my abdomen (from the port). Adhesions and such had made the tube a permanent part of my body. They told him that they could remove it, but that it would require a full abdominal surgery. He made the absolute right choice by having them leave it in! (it was their recommendation too). The tubing has never been a problem for me anyway - I can't feel it. But I did feel the actual port on my ribs, and the anchor on my abdomen. I'm glad they are gone!

We are celebrating my little sisters 40th birthday today (her b-day is actually next week). I can't believe she is turning 40! She has turned into such a wonderful woman. I need to stop looking at her as my 'kid' sister now, I guess :) I'll load up on ibuprofin and have some wine - and my sore bandaged ribs/abdomen surely won't bother me tonight at her party! Happy birthday Lori - I love you!

I hope you are all doing well and enjoying life! Thank you for the continued thoughts and prayers. I know for certain that I would not be where I am today, without them.

and another anniversary!

2010-07-18T12:16:00.008-05:00

I realized late Saturday, that it has been three years since my hysterectomy, and subsequent Ovarian Cancer diagnosis. I honestly didn't think I'd make it this far when I was first diagnosed and two lines of chemotherapy (taxol/carboplatin and doxil) had no impact on my cancer. I imagined if I made it three years, I would be debilitated - as I see in other long term recurrent ovarian cancer survivors. But here I am - alive and thriving, and I wonder why. However, it is now an introspective 'why', and not a guilty one. The comments on my last post really helped me with the guilt. Especially Sams comment that my guilt will not do a thing for those other ovarian cancer patients-and she's right. It won't. What I can do for them and for myself, is to continue to live and enjoy my life, and every day that I have here on earth with my family and friends. That means no worrying about the future. The future will take care of itself.

I got to take my niece (my FH's oldest sisters' oldest daughter) skydiving! It was her request. She actually told me she wanted to do it when she was 16 (you have to be 18). She still remembered, and wanted to do it, and I was more than happy to join in on the fun. We couldn't sucker anyone else into going with us, but that was fine. I enjoyed this third skydive even more - it just keeps getting better! She really loved it too - so maybe a fourth dive is ahead!

Talk about not worrying about the future! ;) I couldn't wipe the smile off of my face the whole day! It was a great way to celebrate three years of survival.

Nothing else is new, except one sad note... I recently lost a facebook friend to ovarian cancer. You can see Sandhy's post about Diane on http://sandhysown.blogspot.com. I could not have honored Diane better than Sandhy did, so I'm not even going to try.

You probably won't hear from me until October when my next scan is due. But who knows? ;)

Celebrations

2010-07-04T12:01:00.002-05:00

Recently, we celebrated my parents 45th wedding anniversary. My sister and I had a surprise 45th wedding anniversary party, that was a COMPLETE surprise to them! I still can't believe they had no clue :) My sister handled the bulk of the planning and work - and I handled the complaining :) I am not a party planner. My husband and I got married in Vegas, because the thought of planning a wedding completely terrified me. She did a fabulous job.

What was wonderful, was that everyone there seemed so happy to be there for my dad and mom. It really turned into a wonderful event. They have really been happily married for 45 years - it CAN be done! :) My favorite husband and I have been happily married for nearly 7 years, so we are on our way.

I had my CT scan and saw my doc Thursday and Friday. My news continues to be great! My CA125 remains at 14, and the scan shows no growth!! Holy cow. The calcified nodules are still there, but show no increase in size. The doctor said that the nodules occur when cancer "shrinks" and leaves behind calcium deposits. So there is no way to tell if cancer remains or not in those nodules - we just keep tracking them.

She is also incorporating a new biomarker blood test. Its the HE4 test, that is supposed to be more reliable than the CA125. Great - its another number for me to worry about!! :) I won't have that result for at least a week. I'm honestly not worried about that number yet, because of the scan and CA125 results.

The one bad thing is that I found out I was one of the very few women at my docs office that was getting "good" results that day. It makes me feel guilty and unworthy. Part of that comes from the fact that I have been extra tired, and I haven't accomplished anything lately. I work, and come home and sit on the couch :( I really need to remember to take my vitamins every day. I think the tiredness is from deficiencies, caused from past chemo treatments. What would those other women accomplish if they had my good news? I need to be re-motivated and re-energized.

Thank you all so much for your continued good energy and prayers! I have been off of treatment since January, and that is a miracle for someone with recurrent ovarian cancer!! Now, I need to get moving! :)

Enjoying Spring!

2010-04-10T12:02:00.002-05:00

I could apologize again about what a bad blogger I am, but would you really accept it? :)

At least I come bearing good news! I had my CT scan and doc appointment last week. The scan *read* that nothing showed up. However my doctor pulled the scan up on her computer, and saw that there are still calcified nodules in my abdomen. Those nodules, in comparison to scans from November, have shrunk! From now on though, I will always have her pull the scans up and read them herself. I don't have much faith in the radiologists' reading, which is not good. At least the doctor is aware of it now, and maybe can say something to get that fixed.

She said that we don't need to do anything now. I need to have another scan in three months. Until then (and hopefully, beyond then) I'm still on break!! My CA125 is down to 14 (the lowest its ever been).

My favorite husband and I were actually in shock. I was certain that I would need to start treatment again (and I think he thought so too). I wasn't as stressed about starting treatment again, knowing she would likely put me back on Avastin, which was really helpful (in conjunction, I believe, with the OVax vaccine trial I was in). Knowing how subversive and sneaky ovarian cancer is, I didn't expect to get an extended break like this! My body is reveling in it, and with spring here, I feel renewed.

For those of you battling ovarian cancer - I wish for the same break for you. I can't explain how much hope this gives me. At a minimum, it is more time, and it gives my body time to recuperate from all the abuse its taken the past three years.

I won't promise to update soon. :) I will try to update more often! Please continue to send good energy and prayers my way, and I'll do the same for you.

Now, go out and enjoy your lives!

Tentative optimism!

2010-01-30T16:13:00.003-06:00

First - let me apologize for not posting sooner. I have been busy with work, the holidays, and all of that wonderful daily minutia that we generally take for granted. I take it for granted too, but definitely less than I used to.

I have had a total of six treatments of Avastin, as a single agent treatment, for my recurrent ovarian cancer. I had a CT scan on Thursday, and a doctors appointment on Friday. Unfortunately for my doctor, and for me - she was sick and not in the office. I got to see her PA, who I really like though, so I still got my results.

The scan results were a little confusing to us. In some sections, it said "no change from last scan" but in others it said "no abnormal mass". The PA said this means that the cancerous nodules viewed on the last scan are either gone, or so small as to not be visible on the scan. Gone? Really?? I only have one calcified lymph node that is unchanged from the last scan. So, it sounds like wonderful news and I am now on "break" from treatment for two months! Wow! In two months I'll have another scan and appointment.

My favorite husband and I still want to talk to the doctor to clarify this report. It is the "no change from last scan" part that has my husband and I confused, and not quite ready to fully embrace that these nodules are really gone. Don't get me wrong - we are thrilled and very happy that I get a break so that my body can recuperate! We just want to clarify that the absence of information, means that there is no information available (no tumors or growths).

However, even if the scan showed no difference from last time, meaning nodules remain - that is still good news! No growth is always good news! But I hope you can understand our confusion :)

I plan to call my doctor next week (giving her a few days to catch up with her other patients) to make sure that the news is as good as it sounds. I will repost then to let you know too!

What a wonderful drug Avastin is! Its been the only thing in 2 1/2 years that has stopped my cancer from growing and even better - caused it to shrink or disappear! I also think that it is especially effective because of the vaccine I received. Both my husband and I think they are acting in conjunction with eachother - the vaccine preventing new growth, and the Avastin killing the active nodules.

So that is my update! I hope that you are all doing well and enjoying each day! I can promise that I will be enjoying all of mine! :)

thanksgiving

2009-11-25T20:03:00.003-06:00

I was not expecting the news I got today. Not at all. I hadn't prepared myself for it, and was not ready for it. I've had nearly 2 1/2 years of not such great news in regards to scans. I was prepared for more not such great news (well - as prepared as one can be for that!)

I've had three treatments of Avastin (four now - counting the treatment I got yesterday). The scan results showed TUMOR SHRINKAGE! There was no new growth, and the tumors that are there showed shrinkage, some nearly 1/2 in size from the last scan! My CA125 has dropped to 16 as well, which is the lowest it has ever been. I'm always happy to hear "no new growth", but with tumors shrinking too? That is too often unheard of in ovarian cancer patients!

As you can tell, I am a little at a loss to process this information. Don't get me wrong - I am absolutely thrilled with the news! Once again, I am so thankful that I was led to my current Doctor and treatment team. I do feel cared for there, and cannot sing high enough praises for the people at Cancer Treatment Centers of America.

I can just relax now in regards to my current treatment. I know it is helping. It may not be an absolute cure, but it gives me time.

The only side effects have been headaches (dull, pounding headaches - not too strong), and an increase in blood pressure. My blood pressure is not high enough to cause concern, but if it gets higher, I will have to take blood pressure medication. That is simply a side effect of the Avastin, and not something permanent. I also have more headaches (probably due to the blood pressure). But overall I feel great, and have no debilitating side effects.

I guess I'm still a little stunned by the news :) I'm sorry for the hastily thrown together post, that I hope makes a little sense!

Happy Thanksgiving to those in the States!

Avastin

2009-09-22T11:33:00.004-05:00

Sorry to have been gone so long.

Last month, my CA125 jumped from 19 to 24. That spurred me to request a CT scan, and my doc was definitely on board with that. We waited a month, and I had the scan this past Friday, and a doctors appointment yesterday.

The scan showed both good news and bad news. The good news is - still no NEW cancer growth! Wow! That is pretty amazing, and I believe it must be the vaccine that is preventing any new cancer implants.

The bad news is - the stuff that is there (nodules throughout my abdomen) has grown. Mostly, they have only grown only about 1/2 cm each in the three months since my last scan. My CA125 is up to 26 now as well. Although upsetting, this news was not wholly unexpected (since my CA125 had been creeping up).

So, we discussed options. The doc mentioned several different strategies. We can wait a few more months before doing anything - we can try hormonal therapy (I have to ask her more about this in the future) - I can have another surgery, and then have heated chemotherapy applied directly in my abdomen - or we can try Avastin. She really thought that the Avastin was the best option for me with "the minimal amount of cancer" that I currently have.

Avastin is a biological therapy (not really a chemo) that targets a protein found in many cancer cell teypes, and halts cancer growth. I think that it keeps the body from providing blood supply to cancer. (I will be researching this more). Usually, it is given in conjunction with chemotherapy drugs, but the doctor said that they have been using it as a single agent drug (meaning that Avastin is all I will be getting). I am happy about that, since I really have no faith in chemotherapy (I've been through three types so far, and none have worked in the least).

So I started treatment yesterday - nothing like jumping in feet first! :) I feel fine, and it is not supposed to really have many side effects. Of course, the side effects that it may have are bad. They are rare - but bad. For example - the worst would be bowel perforation. I may have high blood pressure, and have to take medication for it as a result of this medication. Also, it can cause some kidney problems. I have the treatment every three weeks - we will go three rounds, and then another scan to see if it is effective.

The big hope is that the Avastin takes care of the one lymph node that is located outside of my abdominal cavity (just outside of it). Then I would have surgery again to remove everything - and the heated chemotherapy directly into the abdomen. The heated chemo can only be used if cancer is confined to the abdominal cavity (for obvious reasons).

I will update again soon, I promise. Especially now that I am in full treatment again...

Bad blogger!!

2009-07-23T17:44:00.003-05:00

Yes, I am a bad blogger. ;) Summer has been busy, and I really haven't had much to say.

I did let my two year "hysterversary" and cancerversary go by, without much thought. I didn't even remember it until the next day! It wouldn't have been something to celebrate, but I wouldn't really want to mourn it either. At this point, it really is just another day (and every day on this earth is a good one!!).

My last appointment went well - except that my CA125 went up one point - from 18 to 19. A one point change is not a huge deal (and my doc doesn't think so either). I know she is right, but I am a bit obsessed with that stupid number. We'll see what happens next month.

I hope you all are doing well, and I'm sure I will update again after my mid-August appointment. I know - I'm a BAD BLOGGER!!! :)

18

2009-06-17T17:22:00.013-05:00

I had a pretty good appointment today.

Some good news - my tumor marker number continues to go down (!!!) My CA125 is now at 18. That is the lowest it has ever been since I started. After my first surgery, it dropped to 19, but it never went below that until now.

Most importantly, there is NO NEW ovarian cancer growth (!!!!!!!!!!) :) That is the best news! I was always good at growing new cancer while on chemo. It is good to know that my body isn't currently cultivating new tumors.

My doctor did say that the cancerous nodules that were there on the last scan are all a little larger (by millimeters). However, she thinks that is from inflammation caused by the vaccine working and attacking the cancer. That theory does make sense to me, because my arm is still inflamed too (from the vaccine shots). So, we are just going to wait and watch - which have never been strong points of mine.

Of course I wanted to hear that everything was smaller, or non-existant. ;) I guess I am just learning that everything isn't always as 'cut and dried' as I would like it to be. I want a certain answer, or outcome - but that is just not the way it works.

I have another appt next month - but no further scans planned for now. That is nice, because I hate the stress that having scans causes me!

Until next time!

Its been a while...

2009-06-15T19:42:00.007-05:00

since my last post! Sorry to take so long to update. We have been busy though, and cancer has been (mostly) the last thing on my mind.

My last doctor appointment showed my CA125 as plateaued at 20. I wish it had gone down, but I'm very happy it didn't go up! ;) I have a CT scan tomorrow, and then find out the results of that, and another CA125 on Wednesday. I can't say I'm not worried. However, I have had no significant pains, and I feel just fine. Hopefully, that is a portent of good news to come (fingers crossed...)

Another thing that helped take my mind off of cancer, was our fabulous, wonderful, refreshing, invigorating, and fabulous (I know, I'm repeating myself!) vacation to Alaska! WOW. What a beautiful place!

Here is a picture of me and my favorite husband in Glacier Bay. The image does not capture the color and beauty of the place very well.

We saw humpback whales, orcas, moose, grizzly bears and their cubs, caribou, and Dall sheep (white sheep that live in Denali). We stayed in a cabin by a rushing creek, that lulled us to sleep at night.

We saw Denali (also known as Mount McKinley) which often is shrouded in clouds. In the pic below, it it the tall whitish mountain towering over the others. Again, the picture doesn't really capture its magnificence. The dark mountains in the foreground are like the Rocky mountains. Denali - the tallest mountain in North America - significantly towers over everything else.

It was light out essentially all night. It only got as dark as a typical sunset. The only thing I missed was seeing stars - you just couldn't see them there with all the light.

I highly recommend taking a cruise through the Alaska Inside Passage - and then going on to Denali National Park. It is the most beautiful vacation I've ever taken.

I should update again soon!

A beautiful day!

2009-05-06T15:10:00.009-05:00

Our team - It consisted of people from work, current wacky friends and their friends, and high school friends! It was perfect weather in Chicago.

At the finish line!

We had a great time, and our team brought in over $4,000. Wow!

A bunch of us went out after the walk for pizza and beer. The waiter saw all of the cancer shirts we were wearing, and asked us if "Anyone caught cancer" on the walk... Hmmm. I don't think he thoroughly considered what he was saying. He got a lot of dirty looks. It just goes to show that people really don't think before they speak. I did not take it personally, but it really offended some of my friends who have other cancer survivors in their lives.

It certainly made the day even more memorable, and gave us something to laugh about in the future! ;)

Everything else is just fine. I still feel great, and rarely remember that I have cancer. Work is keeping me busy, and I am still finalizing our vacation to Alaska (cruise) plans.

My next appointment is May 20, so I will probably post again around that time (you have been fore-warned!).

Earth day and Doctor visit

2009-04-22T14:50:00.002-05:00

Hello!

I had a doctors visit today, including blood work. My CA125 continues to drop - now it is 20! Based on that number and the fact that it is continuing to decrease, I pushed back a CT scan originally scheduled for May - to June. I'm starting to be concerned about all of the radiation I've been getting. It would really suck to be cured of ovarian cancer - only to get some other type of cancer from the treatment and scans!

So, I am considering myself cancer free again until next month - when I have blood work and a doctor visit again.

Things are going well! The weather here in the midwest has been getting better and better. I've been walking and bike riding, and I have been wholly present at work again. I feel great, and am really enjoying my reprieve.

Today is earth day. I am a rabid environmentalist, who really practices what she preaches. Some simple ways to make changes every day are:

Try to avoid plastic! Plastic in bottles, bags, packaging, lining cans, etc. It amazes me how much plastic there is, and how it is almost impossible to avoid it. I hate drinking out of plastic bottles - I can 'taste' the plastic sometimes. So I buy a glass bottle of ice tea (like at any drugstore - snapple, arizona, etc.) rinse it out, and use that as my water bottle. It is dishwasher safe, and totally recyclable when the screw on cap finally gives out! :) I just use filtered water from my tap to fill it up. If you have bad water - consider leasing one of those water coolers for your home and fill up bottles with that instead of buying plastic water bottles.

Use reusable bags for groceries. This is one of the easiest and best changes I have made. What used to fill up ten plastic bags in the store, easily fits into two or three cloth bags. They are also easier to carry - and don't cut off your circulation like the plastic bags do when they wrap around your hands.

Recycle - and if a place you go to drink or eat doesn't recycle - call or e-mail them and ask them to place a bin in their facility. It is amazing too how places will listen if you call or e-mail them about something simple like that. Recycle everything you can.

Pay attention to the packaging of what you buy. So much of our waste comes from packaging. Again, e-mailing or calling a manufacturer about packaging is a simple and effective way to let them know you are paying attention.

If you go to a park, or on a hike and you see garbage - pick it up! If you camp, leave the site cleaner than when you arrived.

I could go on and on (and on and on and on).

Don't we want to leave this world in better condition than when we found it? :)

NOCC Walk

2009-04-06T15:50:00.002-05:00

Once again, I am walking with the National Ovarian Cancer Coalition (NOCC) for ovarian cancer awareness. I have some great friends that are also walking with me. We had a great time last year, and there are even more of us this year! Just keep your fingers crossed that the weather will hold...

If you feel so inclined, please donate! I understand that donating is difficult in these tough times, but even a few dollars can go a long way.
http://www.active.com/donate/noccil2009/NNeuman3

Otherwise I am feeling fine! My energy is good, and I really feel normal again (for the most part!). You will note that I don't blog very much when I am feeling good and normal. ;)

Pretty good news

2009-03-25T14:03:00.004-05:00

My results were much more good than bad. My doctor says that a nodule on my omentum (which was there before) is a little bigger. It is 1.5 centimeters now (not sure what it was before). She is not sure if it is bigger due to cancer growth, or bigger due to inflammation from the immune response from the vaccine. We, of course, hope that it is inflammation from the vaccine. The spot on my liver has stayed the same, but she is not certain if that is tumor or scar tissue.

This really is good news, because there was no explosive cancer growth as there was when I was on both the Taxol/carboplatin and the Doxil chemotherapies, and no new areas of growth identified (whew!).

Of course, we had hoped that *nothing* would show up on the scan - but we are very satisfied at this point! So is the doctor.

It also helped that my CA125 is continuing to drop. It is not really a reliable number for me - but if it increased, we would be concerned. It is now 23 (Michael Jordans number - said my favorite husband). ;)

The best part though, is NO CHEMO. My doc is going to give me another CT scan in late May, and we will see what is going on then. I am thrilled that I get a two month break from cancer! I am going to enjoy every minute of it.

Thanks so much for caring about me and my favorite husband. We truly appreciate all the kind words, prayers, good energy, etc. The battle is not over, but I'm beginning to feel like I am now on a winning team!

gulp

2009-03-24T07:31:00.000-05:00

CT scan today

Results tomorrow

On the right track!

2009-03-05T16:18:00.004-06:00

My last weekly vaccine was administered today, with no problems. I also had a doctors exam and she said that everything 'felt' just fine. Most importantly my CA125 is now.........

27

:)

That is down from 45 (Feb), from 79 (Jan), from 175 (Jan), and 360 (Dec). At this point we don't know if it is from the vaccine, or if it was the surgery and Taxotere. It was some excellent news. I was really stressed and worried about it last night (I know, I know... worry doesn't help!) When she told me the number, I had her repeat it several times. 27 27 27

I still have appointments with the research team, including Delayed Type Hypersensitivity (DTH) testing to be done at the end of the month, and a booster vaccine shot in six months. I also will see the doc and have a CT scan at the end of the month. That is good, because the CT scan is probably more reliable than my wacky CA125. When everything shows that I'm clear, I will drop down to visiting her every three months. The doctor will still be keeping a close watch.

For now, I consider myself cancer free. The days leading up to the CT scan and doc visit the next day will probably be tense, but I have a few weeks of no cancer!

Just in time for spring :)

:) :) :)

Rising anxiety

2009-03-02T14:04:00.002-06:00

My last weekly vaccine will be given on Thursday. Can you believe it is over already?? It seems as though this all just started. There will still be some follow up stuff, and a booster shot in six months. It will be strange though, not making the weekly trek for my shots.

I notice that I am increasingly anxious about the appointment on Thursday. Maybe it is because I will find out my CA125 number, and which direction it is now heading. Maybe it is because the vaccine portion is essentially over - and now we will see if it is effective. I guess I am just worried about what is next.

I notice my hands clenched into fists more often, tension in my neck and shoulders, and insomnia which always accompanies anxiety for me. I force myself to relax only to find my fists clenched again.

I am trying to distract myself by planning an Alaskan cruise for us in May or June. Still, the unknown medical future colors that too. Should I plan a relaxing trip or an adventurous one? I just don't know what my medical situation will be. I guess I will do a combination of both, and get all the cancellation insurance that I can! :)

Otherwise things are just fine. The increased daylight certainly helps my mood, and it is warming up out there. Work is going well, and I am still head over heels in love! Things could certainly be a whole lot worse :)

I'll update after my appointment on Thursday - have a great week!

Just checking in

2009-02-08T18:46:00.005-06:00

Sorry I haven't been around, I just haven't had much to say.

So far, all is well with the vaccine. My upper arm where the shots were given is so sore and swollen - I'll have to take a picture and post it. A swollen arm sure beats the alternative though ;) I do have to figure out a way to protect it. There is a heck of a lot of arm slapping, shoulder grabbing and squeezing that happens in daily life. Does anyone have any ideas for me on how to protect it?

I forgot to report that my CA125 was dropping again, even before the vaccine started. It seemed like it went up into the 300's, then dropped into the 100's, then 79 (right before the vaccine). Now it is 45. I hope it keeps going down this time.

I feel fine, and continue to notice my energy levels rising. Now I just need to motivate myself to get off my butt! That is sure hard to do in the winter time. But spring is right around the corner, and our weather this weekend has been in the 50's (Fahrenheit). Also the sun is shining longer which feels good too!

I hope everyone is well. I'll try to be back soon :)

My 15 (or 3) minutes of fame

2009-01-29T22:54:00.002-06:00

View at your own risk... ;)

http://www2.myfoxchicago.com/dpp/health/ovarian_cancer_vaccine

and

http://www.wgntv.com/video/?autoStart=true&topVideoCatNo=default&clipId=3397268

Anticlimactic!

2009-01-21T10:58:00.005-06:00

The doctors visit went fine yesterday. And yes - I did recieve the first vaccine! It was just a small injection, beneath the skin creating a 'bubble'. Here is a rather unflattering picture of me getting the shot:

The remaining ones will be given in my upper arm.

I guess I misunderstood part of the trial. I will get one actual chemotherapy session on Monday - with cyclophosphamide. It is supposed to help to 'boost' my immune system. Then next Thursday I will get the vaccine again, but it will be mixed with Bacillus of Calmette and Guérin (BCG) (I think that is to trigger my immune system too). I will get six more vaccines with the BCG, given weekly, and then a booster shot at six months. My skin reaction to the vaccine will be the indicator as to whether it is working or not.

It was anticlimactic to get this small shot as a treatment, after all of the surgery, chemotherapy, and other stuff I've been through. It seems almost too simple to be effective! :)

Thanks to all for your continued support and uplifting comments!

Inauguration and Vaccine

2009-01-14T12:12:00.004-06:00

The date is set. I should (barring any unforeseen circumstances) begin the O-Vax ovarian vaccine trial on January 20. That is the day that my friend JKE and I planned to be in DC for the inauguration. She tried to get tickets, but couldn't, so we were just going to drive and get as close as we could to the action - to feel the energy, hope and wonder of such a historic moment! Instead, I hope to be starring in my own historic moment with the vaccine trial.

The public relations person from the hospital told me that two news channels were interested in interviewing me and filming the injection. Before, she had said it was going to be a newspaper interview. Yikes! But I haven't heard anything else yet. I'm not going to worry about it, until I hear more! In fact, I can e-mail her this week to see if that is still the plan. If so, I need to buy a new outfit (one that camouflages all of this chemo weight!) ;)

We had 7 inches of snow last night and I am enjoying the view out my window today as I work from home (thank God I work for an understanding and flexible company!). Have a great week!

Oh - Life of Joy inspired me to add a more recent picture to my profile. It shows that I have hair! It is curly hair and there is a lot of gluey hair product keeping my bangs (or 'fringes' for my European friends) straight.

The ball is rolling

2008-12-29T17:32:00.004-06:00

Today at my doctors appointment, we started the anergic skin testing for the O-Vax vaccine for ovarian cancer. They injected me with small amounts of candida, tetanus, tuberculosis, and one other injection in my left forearm. It wasn't too uncomfortable. I am really getting used to needles. I have to go back on Wednesday to have the injection sites inspected, measured, and checked. Next week I have the DTH skin testing. After that, there is a lull (10-14 days) and then I start the vaccine, provided that all the skin testing goes as anticipated. Hopefully my immune system cooperates with the skin testing - and gives them the results that they are looking for!

Things are moving forward - and not a minute too soon. My CA125 (a tumor marker) is up from 101 to 304, in just a matter of two weeks (normal is <35). This high CA125 is so unusual for me. I feel some 'twingy' type pains every so often near my liver, and in my lower abdomen - I think it must be the cancer rallying for a comeback. There is no significant pain though. Nothing like the liver pains I felt last year during taxol/carboplatin (when I was sprouting a mighty fine specimen of a tumor). So I am not going to worry about the CA125 number. Again, like the nodules that show up on my CT scan, I need these to see if the vaccine is working. Right? Sure.

Christmas was wonderful! My Aunt and Uncle travelled the 450 miles to see us again this year. My sister just started a new job, and my favorite husband couldn't really take any more time off of work for us to travel - so this was really appreciated. I also had a great time with the in-laws and extended family.

I hope all of you had a wonderful holiday, and have a happy new year!

First cold

2008-12-24T10:48:00.014-06:00

Well, I am nearly over my first (regular) illness in at least three or four years. Yes, I caught a cold. I am so glad that I have it now, since my strength is improving - rather than while I was recuperating from chemo. I have no voice, and have a terrible cough, but I feel fine. I only sound like I have the plague! ;)

I am finally starting to feel normal again after the IP Taxotere chemotherapy. Whew - that regimen really tired me out. We didn't do any decorating for Christmas, and our shopping was thankfully limited this year (everyone is scaling back because of the economy), so I was able to avoid a lot of holiday stress. It is nice to see the light at the end of the tunnel, and to feel some of my energy coming back.

My parents have the most wonderful friends. We were provided with tickets to the Bears/Packers game at Soldier Field on Monday night. It was 7 degrees at kickoff - with a wind chill of -12. However, we bundled up in layers and barely felt the cold. I stayed outside for the entire first half! Most importantly, the Bears won - so it was a great time! Yes - I have a cold, but I wasn't about to miss a Bears game! You can see part of my favorite husbands scar from his car accident in this photo...

And here was our view of the field

Now on to medical news - my vaccine is apparently done! I made an appointment with my doc for Monday the 29th. I have to go through some anergic testing. That means I have to react to delayed type hypersensitivity testing (DTH) to things like tetanus. I guess they need to make sure my immune system isn't compromised. So I still have some hoops to jump through - but the most important part is done!

For more info on this ovarian cancer clinical trial go to:

http://clinicaltrials.gov/ct2/show/NCT00660101?spons=%22AVAX+Technologies%22&spons_ex=Y&rank=1

The funny thing about being the first person in a clinical trial - no one seems to know what is going on! The research people aren't sure, the doctor isn't sure, everyone has to keep refering back to the protocol. I think that I am going to have to take matters into my own hands, and make sure that I am on schedule with everything required for this (as far as testing and timing) - so that I don't blow this opportunity! I know that they have a lot of other things and other trials that they are doing, so it doesn't upset me that I am not the center of their universe :) I just need to remember that I am my own best health advocate. I'll let you know more next week!

I wish you all the most joyous (and healthy!) of holidays!

CT scan results

2008-12-12T17:33:00.006-06:00

The scan showed several 'nodules' some of which may have been scar tissue, some which were cancer. Also, my CA125 results (which had been steadily going down during the Taxotere treatment) increased this time - from 69 to 101. The CA125 is a tumor marker test that hasn't been really accurate for me. But usually it is lower (it was in the normal range of 29-35 when I had active tumor growth) - so the fact that it is increasing now is somewhat troubling.

These results didn't really surprise or upset me. I think that they took my favorite husband by surprise though. He seemed shaken by the news.

There is also some fluid around my liver, and near my lung. She thinks that this is chemo fluid that hasn't been fully absorbed yet. I have noticed being a little short of breath, and being 'bloated' for no apparent reason. The fluid may explain this.

She said that the vaccine is almost ready! She thinks that maybe next week, we will be able to start all of the preliminary stuff. I have to have a number of skin tests, to ensure that my immune system will respond, before we can start the trial vaccine. They can't start the skin tests until they are sure the vaccine is ready. My doctor estimates we should be on the vaccine by Christmas or soon after.

My thinking is - it is a good thing some measurable cancer is present. Otherwise, how would we be able to tell if the vaccine is working or not?

The doctor wants to leave my interperitoneal (IP) port in. The IP Taxotere did cause my CA125 to drop for a while, so we may go back to that chemo if the vaccine does not work. I hated that chemo - I hope not to go back on it!

I am just glad that I am off of chemo for a while. I need to get my Christmas shopping done this weekend, and continue to get my energy back.

As always, I will update when I know more! Good luck everyone - with your Christmas or holiday shopping. I'm hoping to get mine all done this weekend (keep your fingers crossed :) )

Unexpected

2008-12-10T15:18:00.007-06:00

I didn't want to jinx myself by saying anything before, but it looks like my hair is staying with me! It never did fall out during treatment. I guess that is due to my getting the Taxotere chemo on a weekly basis at a lowered dosage, instead of every three weeks at a higher dosage. I actually got a hair cut on Monday. It is about four inches long!

My last treatment was the day after Thanksgiving. Since the Sunday after, I have felt awful. I felt REALLY awful last week. I was so tired, and my belly ached, with sharp pains shooting through my whole abdomen. It may have been from the chemicals being absorbed, or from adhesions forming or dissolving - I don't know and I don't care! I just wanted it to stop. I barely worked five hour days last week. I was tired, cranky, exhausted, nauseated, and generally 'unwell' feeling.

The good news is that I feel so much better this week. The pains are nearly gone, except for a somewhat disturbing pain near my liver. Every pain I have seems to be in the area of my liver! :) It could be from the interperitoneal (IP) port and hose they have threaded through my abdomen. I hope to have the doctor remove the port and tubing soon - I think it may be the cause of much of my discomfort.

If she told me that I needed the IP chemo again, I don't know that I would agree to it. My quality of life was not very good while going through it. I'll cross that bridge though, when and if, I come to it.

I have a CT scan tomorrow, and an appointment with my doc on Friday. I should know more then about the vaccine trial status after I meet with her. We will also see the status of that suspicious spot viewed last time. I'll update after that appointment!

Thankful

2008-11-26T14:02:00.003-06:00

My favorite husband is fully recovered from his accident, except he still has stitches, and two black eyes. I think its sexy - in a goth sort of way. :)

I'm doing ok. I was just really really exhausted this week. Friday is my last chemo though - so next week will be my last week of exhaustion. Yay! Something to look forward to!

I am thankful this year that I am able to work and live despite the chemotherapy and surgery. I can breathe and walk. I am a tired, but participating member of society.

I am thankful for the love that surrounds me everyday. The love of my husband, family, in-laws, friends, and even those at work who have been so supportive.

I am lucky! I am loved! I am alive! (I am tired...) :)

Happy Thanksgiving!

ER Visit

2008-11-20T16:02:00.002-06:00

For once though, this is not all about me. My favorite husband was rear ended on the expressway today, and was hauled off to the emergency room with a three inch laceration to his forehead.

I walked in to the room, and his face was covered with blood- both dried and fresh. He had a huge knot on his head, as well as a "U" shaped wound. They put in 12 stitches.

I am so very grateful that he was not seriously injured. I know that he would have rather not had this injury, but at least it is something fixable. I am also glad that I was around, so I got there minutes after his ambulance arrived.

Tomorrow is chemo number 3 - two hospital visits in two days! We know how to live life on the edge!

'Roid Rage

2008-11-15T15:44:00.002-06:00

OK - not 'rage', but the steroids that they gave me prior to chemo yesterday really helped perk me up today! I was able to go shopping for my favorite husbands birthday on Monday, and also did some grocery shopping. I figure that I need to enjoy the energy while I can! It felt good not to be so tired.

My blood results were fine. My CA125 was in the 300's after surgery. Now it is at 140. I hope it keeps dropping - that is the highest that it has been since my original diagnosis.

Chemo went fine. They had the 'right' tubing this time for the gravity feed of Taxotere (it didn't have to go through the IV slow drip into the abdomen). That cut a few hours off of my stay.

Also, a public relations person from Cancer Treatment Centers of America came to talk to me. Of course, she came right after they gave me the anti-nausea, benadryl, and other pre-chemo drugs that knocked me right out! She said that some newspapers had voiced an interest in interviewing me about this vaccine trial. Yikes! I told her yes - but I am nervous. I am not really a good speaker (like my blog friend Samantha - who speaks about her cancer experience in front of large crowds - or Kia who also talks to people all over about ovarian cancer).

We'll see what happens. All I know, is that I will have to do the interview BEFORE the pre-meds knock me out. As soon as she left, I was sound asleep. I slept through the whole chemo again too.

Thanks for the kind comments for the last blog entry. I know that all of you are right - I just need to be reminded every now and again. ;)

Tired

2008-11-13T20:52:00.003-06:00

I have been so tired this week. Just exhausted. I've been back to work, but I can't blame the exhaustion on that. They have allowed me to work at my own pace, and have understood my short days and limited mental capacity. I am just so very tired. It must be this chemo.

It frustrates me, because I think that I should be doing so much better. I feel that my - usually fast healing and recuperating body - has failed me miserably.

It will get better, but not anytime soon. I have chemo again tomorrow. They will also check my blood - maybe my RBCs are low or something. I hope that there is something wrong that is 'fixable', but won't delay my treatment. I don't want any delays in this ovarian cancer treatment.

I just have to hang on a few more weeks.

One very good thing happened this week though! On my first day back at work, my boss told me he was taking my company car from me, and gave me a different one. I am now driving a 2007 Prius! Of course all of that generosity makes me feel that I should be a better employee - not a tired one. Sigh.

One down...

2008-11-08T21:45:00.002-06:00

Well, the treatment wasn't too bad. It took a very long time (3.5 hours for infusion and 2 hours of 'rolling around' after to swish it through the abdomen), and was a bit uncomfortable (two liters pumped into the abdomen- super bloat!).

I started feeling a bit "flu-like" last night, and have that awful metal taste in my mouth which is a typical side effect :( My favorite husband bought me some life-savers candy, and that helps when the taste gets bad. He also bought lemons for me to squeeze into my water, and anti-bacterial soap for keeping germs away. He remembered a lot from last year! I do feel better today, and I hope I am on the downswing from the effects.

This will be a weekly treatment - so I go back in next Friday (we switched the day) for my next one.

My CT scan was ok. The doctor said all of the cancer on the previous scan was removed, but there was a small spot noted on this new scan. She believes it is the remnants of a 'clotting' medication or something that she put in during surgery - but said we would keep our eyes on it.

The good news is that they were able to harvest enough cancer cells from my tumor, to start the vaccine (I knew I had plenty of cancer cells!). She thinks it will be ready in four weeks or so. She anticipates my last IP Taxotere treatment to be the day after Thanksgiving.

I'm hoping to feel well enough to go back into work on Monday. I should be ok, as long as these side effects continue to fade.

Have a great weekend!

Yes we can!! Yes I can!!

2008-11-05T18:12:00.003-06:00

First, I am so very thrilled that Obama is now our president elect! I know a lot of people have their reservations about him. However, I believe that he will win the doubters over, as they see his sincerity and his true desire to be a great leader and to bring people together. So long Bush/Cheney regime! No more ruling with fear and intimidation! Don't let the door hit you in the butt on the way out. :)

I laughed and cried last night, while watching a hugely historic moment. It gives me faith in humankind again.

I start chemo tomorrow. I am a bit nervous, as this will be my first time with the interperitoneal (IP) chemotherapy - where taxotere will be injected into my new abdominal port to wash throughout my abdomen. First I meet with the doctor, and she will review the CT scans I had taken today. Then I'll have chemo in the late afternoon. There is a chance they may admit me overnight, if there is a reason to. I don't know much about this treatment - I didn't spend as much time researching it, and there was not as much info about IP Taxotere on-line, as there was about my previous chemo drugs. I trust my doctor though. Also, I can't worry about what I don't know about.

I'll let you all know the gruesome details later.

'Yes I can' get through this. :)

Home sweet home!

2008-10-26T17:38:00.002-05:00

I am finally home! They discharged me today. I am tired, and definitely sore from the 1 1/2 hour drive home (those potholes REALLY hurt when you've had internal surgery!), but I feel very good considering! I think that I feel better than after my first surgery, although my incision is twice as long (extends up beyond my belly button now to mid-rib cage). I can "out-scar" any one I know, I think... ;) (any challengers??)

The doctor said that she removed ALL VISIBLE OVARIAN CANCER!!! (only microscopic disease remaining). She said there was no sign of the cancer "peppering" across my intestines, as the CT scans seemed to show. I simply cannot believe that I am cancer free right now! I really did not expect that to be the outcome. I thought that she would get a lot of it - but did not expect it all to be removed. Wow.

She has sent part of it to France, to have a vaccine created for the clinical trial. She sent another portion to California to have it 'tested' with different chemotherapies to determine what may affect it, if the cancer grows again.

I start chemo in less than two weeks. I have to call tomorrow to make the appointment, then I will have more information.

Words cannot describe how much I appreciate all of your prayers, thoughts and good vibes. I know that I have God to thank for this, but he may not have noticed me, without all of you!

I am still stunned with what has happened so far. I am also on pain meds, and need to rest! I'll update later in the week.

Wow.

Skydiving, anniversary and surgery - oh my!

2008-10-17T10:10:00.007-05:00

I have quite the busy weekend ahead of me. Today is my last day at work, for a while (since I will be recouperating from surgery). I have a lot to finish up!

Tomorrow, I am going for my second skydive. My favorite husband will be there with me (he is quite adamant that he is staying the ground). More importantly, tomorrow is our fifth wedding anniversary (we have been together over 16 years). We are going out with our friends to celebrate.

Then, on Sunday we'll pack for our trip to Cancer Treatment Centers of America in Zion, IL. Monday is a bunch of pre op stuff (including the nasty go-lytely drink for the clean out :( ) and Tuesday is surgery, where the doctor will hopefully remove all of the current ovarian cancer. We want optimal debulking here!

I doubt I will be posting again prior to that time. I'm keeping really busy, so that I have no time to worry or think about the surgery. Honestly though, I am not too worried about it. Whatever will be, will be - and this is a situation that I have absolutely no control over!

Thanks for your continued thoughts and prayers! I hope to post towards the end of next week with my status. I hope that the doctor is able to remove all visible ovarian cancer (no inaccessible stuff), and that I will heal well and quickly (like I did last time).

More importantly, happy anniversary Tim! (I let it slip! That is the name of my favorite husband!) You bring such joy and laughter into my life - I am so lucky to love and be loved by you!

Have a great weekend and week everyone. And remember:

"The most wasted of all days is one without laughter." -ee cummings

....and it keeps getting better!

2008-10-09T19:25:00.011-05:00

I am likely a good candidate for the ovarian cancer vaccine trial. My next appointment is Monday, October 20, and my de-bulking abdominal surgery is Tuesday, October 21. I will receive inter-peritoneal (IP) chemotherapy (taxotere) once every three weeks, after I heal. If they are able to formulate a vaccine (this takes a couple of months), and if I am deemed qualified (they won't determine that, until they are sure they can formulate the vaccine) it will be administered weekly with a low level chemotherapy drug (cyclophosphamide). There are a lot of variables here that may exclude me from the study - but at a bare minimum, they are removing my current visible ovarian cancer and treating me with an IP chemotherapy.

I had to type it out, because I still don't believe it.

I still don't believe it.

I can't believe that I am excited to have more surgery and more chemotherapy. But I am.

I know that the prayers, good thoughts and healing light sent my way had something to do with this.

Thank you!

Some good news

2008-10-07T18:50:00.002-05:00

I'm still a little out of it from the anesthetic, so I'll keep this short.

The colonoscopy went very well. The doctor removed a polyp, but said he did not think it was cancerous - it did not appear to be cancer. They said I had a little diverticulitis (Gerry - I'll be asking you about that!) The most important thing though, is that the tumor near my liver is not invading my large intestine! He said that he did not see any pressure points either (where the tumor would be pressing against the intestine).

Tomorrow I have CT scans much of the day. I am sending my favorite husband to work tomorrow, while I bounce from scan to scan. Then he will be around on Thursday to meet with the doctor.

Please continue to send prayers, good thoughts, and vibes my way!

Whirlwind

2008-10-06T19:17:00.003-05:00

So far, this has been a great experience! I've met with nurses, had an EKG, blood drawn for all types of tests (including a BRAC genetic test), a meeting with the gynecologic oncologist and her staff, and a meeting with the gastroenterologist. Everyone has been great! This place is so organized - I think that our longest wait was for 20 minutes, and most of the time there was little to no wait.

My schedule is for a colonoscopy tomorrow. Now, many of you know that means the big "clean out". So I am sitting in the hotel room, hungry, and drinking the nastiest stuff I have ever had to drink. Its called "halflytely" and the taste is atrocious! I am only "half" way through right now too. I don't know if I'll be able to drink the rest of it! :( That will take up the day tomorrow, because I'll be under anesthesia.

Then on Wednesday, I will be CAT scanned from head to thigh. There will also be a mammogram. The nutritional and naturopathic consultations occur on that day as well.

Finally, on Thursday, I get to see the doctor again. She will look at all of these results and will determine her idea of the best path for me.

So far, this is great! I love the "one stop shopping" way this is done.

Well, I need to drink more stuff - I'll try to update tomorrow as well!

It is scheduled!

2008-10-03T18:37:00.002-05:00

I am scheduled to meet the doctor on Monday morning!

I have two good college friends coming in tomorrow, and they will help me celebrate, I'm sure!

I will update this from the hotel, probably Monday night.

YIPPPEEE!!!!!!!!!!

BIG sigh of relief!

2008-10-01T15:32:00.006-05:00

Cancer Treatment Centers can schedule me for an initial consultation this coming Monday, or the next. It all hinges on if they can get my pathology slides, all my scan records, and every bit of cancer related data about me from the three facilities involved. (surprisingly - there is a lot of data for one years time). The initial consultation takes three-five days. They really put you through the wringer! There will be consultations with the doctor, more scans (if needed), more tests (if needed), more bloodwork, a nutritionist, etc. etc. I like their "whole" approach to cancer - they try to treat the mind, body and spirit.

My insurance will not be a problem!!!!!!!!! (happy happy dance!) It will be a little costly for us, but it doesn't sound like anything we can't handle!

This is such good news. I have put a lot of hope into being seen at this place, and getting into their clinical trial for ovarian cancer (if it is determined to be a good fit for me).

I will update with more news once I'm scheduled.

Whew!

Oh, I must add that my mental break from ovarian cancer last month really felt good! It was nice to put it all out of my mind for that time. There were still periods of time where I felt panic - but I am getting better at going with the flow. Panic does not help my situation. Anxiety doesn't help. I am getting better at separating my thoughts from that. Except sometimes at night. So I am extending the hiatus for a while longer!

Pictures worth a thousand words...

2008-09-22T17:32:00.003-05:00

And I was there for it! :) GO CUBS!

On Hiatus

2008-09-15T18:16:00.005-05:00

I am taking a break from thinking about cancer until October. I can't do anything until then, because that is when my PPO will kick in. The new center won't even look at me until I have that coverage. Its still even unclear if THAT will be enough.

I started off the month by worrying about it. Did that help? No. So now I am going to spend the next two blissful weeks being 'cancer free'. I'm going to try to remember how that used to feel :) I'll let you know if I succeed...

Doctor appointment

2008-08-30T10:29:00.004-05:00

I had an appointment with my gyne/onc on Thursday, to discuss the CT scan I had the week before. She said that the main tumors have not changed much (grew a little), and also that the cancer has spread - there was more on my omentum (the remnant that was left) and its now likely seeded throughout my intestines. She could not see the tumors, because they only show up if they are larger than a centimeter in size. But the thickening she saw on the CT indicated to her, that was the most likely explanation. No more Doxil for me, which is both good and bad. No more sore swollen feet and tongue blisters (I can not tell you how much those hurt!!), but Doxil was also surprisingly easy, and I felt human during the treatment. Of course, it didn't work - so I won't be abusing my body with that particular poison anymore.

The doc recommended Cisplatin and Gemcitabine, with avastin if my insurance would approve it. However, my favorite husband and I had been researching a clinical trial that may fit my circumstances. We told her about it, and she agreed. "Do it." she said. Other doctors would not want you to leave their care, or would want you only participating in studies in their hospitals. I love this doc, and will continue to seek her advice as I go along.

So on my checklist of things to do:
1. I can switch from my HMO to a PPO as of October 1. This will allow me to do the study, without having all the referral paperwork (if the referrals would even be approved). Since they can take a month for approval, it will be worth the extra cost to us financially. Also, I will be able to go anywhere for treatment or consultations, which may be beneficial in the future.

2. Call the facility, and set up an appointment to see if I will be a candidate. The study will involve another operation to remove what tumors they can (de-bulk me again), interperitoneal chemotherapy (IP) with taxol (they 'wash' your abdominal cavity with the chemotherapy drug), then they create a vaccine with the tumor cells from your own body, and treat you with that vaccine. Since I seem to be immune to the traditional chemotherapy, I hope that this treatment will be what I have been looking for! I hope I get accepted. I hope that my ovarian cancer stops smearing itself around my abdomen, and melts away.

I have to remember to breathe. I have to quit trying to look ahead, and plan or predict the future.

On a brighter note - our bamboo floors are in! They look so good! I wish we had them throughout the whole house now! We are buying a new bedroom set too. Of course all of the other furniture looks awful to us now, with the new floors :) If only we could afford all new furniture! My favorite husband will have to start doing better in his poker tournaments...

Breathe.

WOW!

2008-08-20T11:18:00.010-05:00

WOW!! What an experience!! It was wonderful, terrifying, exhilerating and all other descriptive words rolled into one!

I'll write more about it soon - no time right now. But I highly recommend it for any other thrill seekers out there! Skydiving is so cool!!! I can't wait to do it again!

Skydiving!

2008-08-09T10:54:00.005-05:00

My friend JKE turned 40 this year. I have known her for at least 18 years - nearly half of her life so far. For many of those years we have talked about skydiving. Talk, talk , talk. Well, we finally set the date and time, and made a deposit! Life is short, and we aren't getting any younger, and we couldn't wait too much longer to do it. So on August 19 we will brave the unknown, and skydive! I can't wait!!!

In other news, I am off to Colorado this week for work. This year has really included a lot of business traveling. I'm glad that I feel healthy enough to continue to do it.

I'll certainly be back next week to talk about the skydiving! WOO HOOO!!

In rememberance

2008-07-25T15:52:00.007-05:00

Randy Pausch died today. He had terminal pancreatic cancer, and was quite popular on you tube, Oprah, and other forums because of his "Last Lecture" about achieving childhood dreams. It was recently published as a book too.

His death hit me kind of hard - maybe because I was a regular reader of his blog. I think all people with cancer have a certain bond or connection that others can't share. I appreciated the 'face' he put on cancer, as someone who was still a functioning and intelligent part of society. He also did not wallow in his circumstances, rather he wanted people to have fun every day. That was not something that just came about because of the cancer. He was like that before cancer.

One thing I hear over and over again - cancer fighters are "so brave" or "so strong". Bull. We are no braver or stronger than anyone else. Its just that our circumstances are different. We can be "determined". We can be "resilient". We can be "resourceful". But those words can apply to anyone else too. We are still human. We did not turn into some mythical, martyred saint just because we were diagnosed with cancer.

I guess I am just tired of the 'brave and strong' references. I have always been strong. Cancer did not make me strong- it has weakened me. I am weaker physically and I am weaker mentally. I am as brave as it takes to wake up every day and go through life. Everyone is that brave.

I just need to be 'brave and strong' enough to follow Randy Pausch's advice, and have fun everyday. We in the cancer community will miss you Randy.

Just fine!

2008-07-23T14:24:00.004-05:00

Thankfully, the side effects I suffered last time, did not affect me this time! Whew! I took some steps to prevent the pain and swelling, and they seem to be helping. Also, I am sure that the prayers, good vibes and positive energy from you all has helped too!

We have a busy week ahead - a cirque de soleil show, a Cubs game, Pierogi Fest, and trying to clean the house for our next big project (hardwood flooring). We finally decided that we are not up to the challenge of installing the flooring by ourselves (although I'm sure it would have been a laugh riot!), and we are outsourcing the job.

Of course, we haven't got a quote for the work yet...

One year

2008-07-16T19:21:00.002-05:00

Today marks one year since my surgery (hysterectomy, omenectomy). One year since ovarian cancer, unwelcome though it was, became a part of my everyday life.

The year has been punctuated with chemotherapy induced illness - days spent on the couch struggling to just get to the shower, larger aches than I ever believed possible, and a loss of dignity and pride during multiple procedures and doctors visits. It has also been punctuated with sadness (the deaths of some very special people). There have also been great joys (time with friends and family, wonderful vacations and weekend trips), and I learned that people are much more understanding and thoughtful than I had believed possible. Of course, there are always jerks too... ;) It seems that much more than only one year has passed.

I hope for so much in this next year.

Travelling fool

2008-07-08T21:10:00.002-05:00

After getting back from Hawaii - I vowed not to get on a plane again for at least a year. My job did not get that memo. ;)

Yep - I am out of town on business again. I only wish it was to Hawaii!

Carry on...

Hawaii pictures

2008-07-03T22:38:00.007-05:00

The favorite husband and me boarding the dinner cruise. The background is real, not fake!

On a beach in Maui

Waterfall on the Road to Hana - Maui

Cool water cave on Kauai

Ah - beautiful Kauai

Waters of Kauai

Back from Hawaii and chemo #3

2008-07-03T19:12:00.004-05:00

Yes, sadly we are back from Hawaii. We just got back on Tuesday, and today I had my third Doxil treatment.

Hawaii was beautiful! We did a lot of great stuff. We went zip-lining, parasailing, and my niece and I went horseback riding. In addition, we saw a lot of beautiful scenery and spent some time on the beautiful beaches as well (in the shade for me :) ) We did a sunset dinner cruise too. There were 10 family members including us, traveling together. We did some things together, and many things apart, and I think everyone enjoyed the trip! Also, we all got along very well, which is rare when traveling with that many people.

Unfortunately, my husbands maternal aunt passed away the day before we came home. She had thyroid cancer, and was at home under hospice care. She knew she did not want heroic treatment, and spent her last two months basking in the love of her family and friends. She will be very much missed by those of us who loved her. She was full of joy and life, and it helps to know that she has to be in a better place now. It was really difficult though for my MIL and my husband, who loved her dearly.

Also while on vacation, a blog friend lost her mother to ovarian cancer. Her moms story and mine are so similar. She had just finished the regular treatment of Carboplatin and Taxol -had a CT scan, and they found a recurrence. Her 50 year old mom passed away last week from it. It was so sudden and unexpected - it shocked me. Please keep Jamie and her family in your thoughts and prayers. This is a really difficult and painful time for them.

I had my third Doxil treatment today. While in Hawaii, I had no pain or problems, except that my feet swelled up like balloons during the whole trip! Now those who know me will probably say that my feet are my best feature. They aren't anymore... ;) I am just glad that I did not have any pain. It only held us back, in that we didn't hike as much as we normally would on vacation.

My doc said that I should get some support hose. Sheesh. Support hose? Aren't those for 80+ year olds? I can see wearing them in the winter, but it is summertime-how do you wear support hose with sandals? I guess I just need to suck it up, and do what is best for me :(

I am really trying to follow all directions for this treatment, because I don't want the foot pain that debilitated me last time. Also, I have to do a lot of traveling next week for work (possibly Arkansas and Denver). So I will spend my weekend on the couch, with my feet on ice, in order to hopefully minimize any side effects.

I'll post some Hawaii pictures a little later this weekend. Have a great fourth everyone!

Back on my feet

2008-06-04T19:29:00.003-05:00

Yes! I am back up and moving! My feet still hurt, but I can walk again. I was starting to worry that I had really damaged myself. I had to crawl to the bathroom at one point over the weekend. It is so good to be on the mend! Sigh - but no more power walking for a while...

Also my doctor advised that I get some clogs (my husband says I'm a fashion statement). I haven't worn clogs since junior high school. Please don't laugh at my footwear if you see me on the street.

Some additional good news - I am postponing my next chemotherapy so that no side effects will interfere with my upcoming vacation! Yes you read that right - vacation! We are joining my favorite in laws on a trip to Hawaii in a few weeks. As it gets closer, I am really starting to get excited! We are going to go hiking, horseback riding, zip lining, etc. etc.

My doctor is totally on board with postponing my next Doxil treatment until I get back from the trip. She still wants to see me in a week, but I will not be having chemo. That will give my feet a chance to fully heal, and the other skin issues I'm having a chance to resolve themselves as well. And for my next treatment, I now know what I need to do to minimize the effects on my feet and hands (no power walking. ;) )

Enjoy your mobility people!

Big foot

2008-05-31T10:08:00.003-05:00

I am hobbled. My feet have not been reliable for the last week, but really bad for the past four days. I went to the doctors yesterday, and they lectured me for the walking I have been doing (not since Sunday though). It was embarrassing because they sent in the chemo nurse to go over the 'do not' list for Doxil again. I felt like a kid getting lectured for not following directions. If the shoe fits... But it doesn't. Swollen painful feet. I hope they get better soon, because I need to work and I need my feet!

I am soaking them in cold water, elevating them, and basically trying to stay off of them - but it is HARD!

On the upside - I got to see a dear friend who was in town for a convention. Old friends are the best. They have seen you at your worst, been there through good and bad times, and still stick by you. It was so good to see her - and she looks fabulous!

Doing fine

2008-05-16T16:30:00.003-05:00

One day after treatment, and one day after my 41st birthday - I am doing fine.

First the birthday. I used to dislike birthdays, because they meant that I was getting older. Now I like them, because they mean that I am getting older. What a shift in my outlook, in just one year! :) My favorite husband and I will celebrate next weekend.

The doctor said that the red dots I have on my legs and stomach are a side effect of the Doxil, and to let her know if it gets any worse. She said to wear very loose clothing - so I have to go shopping for some mumu's. :) (Just kidding - for right now at least). The infusion went fine. I am just a little tired and cranky today (I blame the steroids!) and I am trying to keep my hands and feet iced to prevent any further side effects.

But so far so good! The side effects are certainly reasonable at this point. I just don't want to turn into a big, rashy, mess. Oh well, at least I have hair!

Oh - today two women I know are undergoing surgery for colon cancer. Please send your healing thoughts and prayers to Linda and Gerri today - and for the next few weeks! I'm hoping that both surgeries are totally successful, and that no further treatment will be necessary.

Bare naked

2008-05-14T20:41:00.003-05:00

I haven't been wearing a head scarf since the ovca walk. I feel like I look silly - but others insist I don't ;) I'll post a picture soon. It is growing in so curly. I have never had curly hair before. My attempts in the past with home perms, never came out right - and never lasted for very long!

All is going fine. My second treatment is tomorrow. I'm not really worried about it - except I noticed a bit of a rash the past few days. I'm hoping it is just a seasonal thing, and not a side effect. The treatment should go faster than last time.

I have been walking a lot with my friend, at least an hour a day, several days a week. We have really been lucky with good weather here. Thats why I haven't had much time to blog.

I'll check back in soon!

NOCC Walk for Ovarian Cancer Awareness

2008-05-05T16:00:00.003-05:00

Just some of the ovarian cancer survivors at the event

My favorite husband and me - a little blurry

JKE and me at the finish line

Behind us in the teal shirts are Larry and Adam

Thank you!

2008-05-04T19:35:00.002-05:00

I just wanted to thank all who donated or wished us well on our walk Saturday. It was great! The weather cooperated, and erred on the side of 'cool' which was fine with me. Although it threatened to rain at one point, it never did.

Thanks especially to my dear friend JKE who planned and was our team leader for the walk. Thanks also to Larry, Nikki, Adam, Hayo and friends, and my sis in law Nanci, Mark and my niece and nephew. And thanks to my favorite husband who only complained a few times about the length of the walk :) It was so nice to have support of friends and loved ones.

A picture is forthcoming - but I wanted to really thank those that supported me in this! You are all the best!

Donations are welcome

2008-04-24T13:53:00.002-05:00

My favorite husband and I are walking on May 3, 2008 in the Chicago Breaking the Silence Ovarian Cancer walk. If you'd like to donate (every little bit helps), follow the link below!

http://www.active.com/donate/breaksilence/NNeuman1

I am looking forward to meeting other fighters and survivors at this function as well. Knowledge is power!

Walkin'

2008-04-22T21:13:00.004-05:00

I was a little tired over the weekend, but nothing significant. So far this chemotherapy drug has been easy easy easy (knocking furiously on wood- please remain easy)! Yesterday and today my favorite husband and I went for a walk. Apparently that was a good idea, since my friend JKE signed us up for the Chicago NOCC walk for ovarian cancer on May 3. Wasn't that sweet of her? ;) She knows what's good for me though. I need to get my body out of the extreme winter atrophy I have succumbed to (and I can't even blame it on cancer! Where's my scape goat!)

I was really touched that she initiated it and wants to do it. I saw the walk listed several days ago - but didn't think anyone would want to do it with me. Now I have someone to walk with (and a few more too - she found another sucker!)

Its spring, and its beautiful outside - let's move!

What - no side effects?

2008-04-19T09:36:00.003-05:00

I am feeling just great! I keep waiting for the 'other shoe to drop' and for some terrible side effect to blindside me. I have no nausea, no real pain, a slight sore throat (likely from the chemotherapy killing quickly dividing cells), no tiredness, etc.

My complaint is that I am supposed to not walk too much, or do repetitive things with my hands (type, sweep, rake, rub anything, etc.) in order to prevent a common side effect of this drug which is hand-foot syndrome. I'm not supposed to grasp things or apply pressure to the palms and soles of my feet. The Doxil can cause a painful red rash and blisters on the palms of the hands, and soles of the feet. I am icing my hands and feet periodically over the next few days to try to prevent this effect. In addition, I am supposed to watch my sun exposure to prevent other rashes. This drug seems to be a skin affecting one. So I feel wonderful - but can't do much! ;)

If anyone can think of activities or things I can do that don't use the hands or feet much - please leave a comment! I must be omitting some obvious activities. I am only going to follow this regimen for another day (through Sunday) for now. Compared with my last chemotherapy, this is a breeze and I am not complaining. Now I just hope that it is killing my ovarian cancer swiftly, and completely - or at least shrinking it.

I survived!

2008-04-17T19:33:00.002-05:00

I survived my first treatment of Doxil for ovarian cancer. It is good that I didn't have initial side effects or reactions to the drug. I am still a little bit loopy from the steroids that they give to counteract side effects, but I don't take as many as I did on my previous regimen.

The first session at my new provider was a good experience. The best news is that my gynecological oncologist sees me prior to EVERY chemo session for a check up. I can bring all my questions and concerns to her, and she is so helpful, and really takes time with me and my favorite husband. She really is a gem. Then they draw lab work, and put me in a chemo room - which is just a doctors office with two chemo chairs and a TV. The amenities are not as nice as my previous chemo -(the TV only gets two fuzzy channels) but who needs amenities! :) My new drug will only take an hour to infuse, as opposed to the five hours for my previous chemo regimen. So from start to finish, it should take about 3 - 31/2 hours. I'll bring my laptop next time or something.

Before my next treatment, I need a MUGA scan. It is a scan of the heart. Don't worry- I'm not having problems!! They just need a baseline because Doxil can be really toxic and damaging to the hearts of some patients (cardiotoxic). I believe mine is strong, and will tolerate the treatment well. Also, it is a new test that I have not yet had so I am strangely looking forward to it. I am collecting medical tests and procedures by the way... I think I have all my friends and family beat right now. :) I certainly have them beat for the most procedures in the least amount of time. Nyah nyah nyah!

Now I just have to wait a few days to determine if any side effects will hit. Regardless of side effects, I have to stay out of the sun, and as always - stay away from sick people and crowded places. So if you are sick, please don't breathe on me ;)

Its a 'go'!

2008-04-15T12:31:00.002-05:00

This Thursday I will start a new chemo. I just got the confirmation call today (after a message left for me yesterday - telling me I wasn't approved yet. They just wanted to get me all worked up I guess!) :)

I look forward to starting chemo at a new place. I hope it all goes smoothly, with no significant side effects or reactions to the chemo drug. I'll probably be nervous for the next couple of days until I know how the drug will affect me - until I have a session 'under my belt' so to speak. Hopefully it shrinks the ovarian cancer in all of the areas that it has migrated!

There was sad news this weekend - a sales rep for my company passed away from colon cancer. I knew he had cancer, but had no idea it had progressed so rapidly or was so serious. He doesn't work out of my office, and so I rarely saw him, and infrequently talked with him on the phone. Please say a prayer for Rolands family if you are so inclined.

Also my main boss was out of town to attend the surgery for his mother for colon cancer. I don't know how she is doing yet, but she did make it through the surgery.

Finally, my wonderful father in law was diagnosed with prostate cancer. When it rains, it pours I guess. He should be starting treatment (radiation) later this month. I know it is especially hard on my mother in law - because she has had cancer touch her family many times. I am very hopeful that his treatment will be a cure. It sounds like his doctor knows what he is doing.

There was a fairy tale time when there was no cancer in my life. Now it surrounds me and those that I love.

Call from the Doctor

2008-04-11T12:04:00.003-05:00

My gynecologic oncologist called me on her first day back from vacation! Wow - what service and dedication. I am impressed. (did I mention how glad I am that I switched docs? :) )

She said that, although she had not reviewed the slides herself yet, cancerous cells were found in the needle biopsy. No big surprise there - it was expected. She didn't say what type were found, but based on the treatment she is suggesting, I believe it is ovarian cancer. Again - no big surprise there!

She wants me to start on Doxil as my next line of chemotherapy, starting next Thursday. It is not set in stone yet, as her office needs to call me to finalize everything. However, this ball is now rolling - and I look forward to having an active treatment regimen going.

I again asked her about surgery, and she again said that it is not recommended at this time. I just hate that I can feel the tumor - or at least feel the things it is pushing out of its way. I wish it were gone. I hope that Doxil shrinks it and the other small growths in my abdomen, down to nothing.

I've been on a bit of an emotional roller coaster since I talked to her - I won't lie about that! Alternately feeling happy that I will be having treatment, and terrified of the treatment and side effects. The good news is that this chemo is reportedly not as energy-sapping as the previous type I was on. I am trying not to worry about the side effects until I know what they will be for me - but it is hard not to. One day at a time, right?

I'll update again when this is all finalized.

CT guided needle biopsy

2008-04-07T21:16:00.004-05:00

The biopsy went well. It was truly an interesting procedure. Unfortunately, it was not painless. They didn't knock me out. The nurse said that she gave me an 'anti anxiety' drug and a strong pain killer. I asked her if I looked anxious ;) she said no. Most of the procedure was painless - however, there was a point where I really felt the needle deep inside of me. I asked the doctor later, where the needle was during the time of pain. He thought it was when he was breaching the wall of the tumor. It felt exactly what you would expect an eight inch needle inside you to feel like. Luckily, it was short lived pain.

He did have to repeat the procedure when they found he hadn't collected enough cells the first time. Ouch again! Good thing I'm tough. I remember the whole thing, but it was not traumatic.

Then back up to my room where they observed me for a couple of hours, gave me lunch (the less said about lunch the better!), and then I got to go home! They should have the results in about a week or so. I'll call my doc (who is on vacation this week) and hopefully set up an appointment for next week. Her medical resident and her medical partner stopped in to see me - that was unexpected and appreciated! Once the results are in we can determine which line of chemo to start next.

I had a whole parade of people there too. My favorite husband, my mom and dad, and my medical student. I sure felt important ;)

I'm glad that part is done, and now look forward to a treatment regimen. Look out ovarian cancer - I think this hospital and team may just have your number!

Finally scheduled!!

2008-04-02T23:31:00.002-05:00

Finally, my needle biopsy is scheduled! I never thought it would actually happen (well, it was tentatively scheduled for last week, but I kind of knew that wasn't going to happen).

Its funny. I have been waiting for this since March 4. My old medical group couldn't seem to get it together to get me the referral. I switched, and saw my new medical group pcp on Tuesday of this week. So, I get the referral from my NEW medical group on Tuesday. I get the DENIAL from my old medical group today... Something is not right with the sytem!

Oh, and I got a bill today, for my medical records that I asked be sent to my new doc. Nice.

I AM SO GLAD I SWITCHED GROUPS!!

Plus my new group assigned me my very own medical student! OK, he is a first year student, but they are trying a program where the student follows the same patient throughout their medical experience. It is supposed to teach them the patients perspective. Poor kid. He looks so young and innocent. He has no idea what he just got himself into... :)

So, my biopsy is on Monday! I want to dance!! I want to sing!! (I want to puke a little too...) Lets get this thing rolling.

Needles

2008-03-20T20:58:00.003-05:00

Tomorrow I go to have my port flushed at my oncologists office. When you have a port, it has to be flushed every three months in order to ensure it is functional, and that it does not become clogged. I will also be telling the staff and my oncologist that I am changing medical groups. I am sorry to be leaving such a kind staff, but I am not sorry to leave that medical group! However, I hope that I am not going to just run into the same problems at the new medical group. We shall see.

Also, I got a call today that they are STILL waiting for the insurance approval for the CT guided needle biopsy of my liver. However, we did set up an appointment for it, for next Thursday. If they won't let me have it done at the university, I'll just wait until April 1 when the new medical group kicks in. I mean, I've waited this long already, whats another week or so? It sounds interesting. I'll be under twilight sedation, and they will insert a needle into me. They will keep putting me in and out of the CT scanner, to make sure that the needle is going the right way. They said it takes about an hour, and that they keep you there for about four hours afterward to make sure nothing important got punctured, except for what they wanted to puncture. ;)

The biopsy will tell us if the suspected cancer on or near my liver is still ovarian cancer, or if it is some other type. That will determine what type of chemotherapy I will get. Doxil or Gemzar or Taxotere - oh my! There is a certain poetry to chemotherapy drug names.

I am in great spirits though. The clouds and fear have lifted - I have not been plagued by them for several weeks. I asked God for a miracle. I don't know if I will get it or not, but the simple action of asking seemed to lift the paralyzing fear from me.

I just wanted to give you all a short update (that really was not so short). I'll let you know when I know, if the needle biopsy will continue as scheduled or not!

Living with cancer

2008-03-04T21:07:00.003-06:00

The title says it all. The gynecologic oncologist said that from here on out, I will likely have cancer. The PET scan showed three areas -near my liver, on my colon, and in my upper abdomen. Those little cells sure get around! There was also a suspicious area in my neck (the scan said it could be the thyroid, or vascular). She was not convinced that was cancer.

She said the chemotherapy that I was previously on, did not seem to do a thing to stop or slow the cancer. I am platinum resistant (became immune to the effects), or refractory (never had any effect). What a waste! I hate that I was poisoning my body for no reason.

She said that we can fight it with chemo - all different types of chemo - to hopefully keep it from growing, and possibly shrink it. I would stay on one type of chemo until the cancer decides to ignore it, and then try another. But the implication is that chemotherapy will be my life.

She wants to biopsy (needle biopsy) the mass near my liver, I guess to ensure that it is ovarian cancer, and not a cancer of some other name. I will be switching my insurance to her hospital, where any future chemotherapy I get will be under her direct supervision. I only hope that my insurance company will understand and not be slow to act in changing my coverage.

So, that is where everything stands as far as the game plan. I hope that one of the chemotherapies is especially effective, and knocks this back for a while.

Tonight I am making chili for my company's 'chili contest' that they hold every year. That is more important than worrying about the future -right? ;) In fact, I need to change that title up there to " LIVING with cancer " (because "cooking with cancer" just doesn't sound quite right... ;) )

No answers, more questions

2008-02-28T19:34:00.002-06:00

I finally heard from my oncologist about my PET scan results. There was nothing really definitive though. He said that there are three areas on the scan that are suspect. The aforenoted mass near my liver, and two others in the "abdomen". Hmm. My abdomen is a large place. ;) I wish he would have narrowed it down a bit.

He did not actually look at the scan, just the technicians interpretation of the scan. I had the scan sent to the gynecologic oncologist that I am seeing on Tuesday, so she can hopefully interpret it with an expert eye.

I am hoping for surgery first, then chemo again (not that I am wishing for chemo - but I think you know what I mean!) I just want this out of me (again)! Sometimes they don't do surgery, but start a new chemo regimen instead. Possibly Doxil, or Gemzar (boy, I am really learning the lingo.) I hope that radiation won't be required. I have a fear of radiation. Shoot me up with all the deadly chemicals you want, just don't 'zap' me.

The upside of this, is that there were no spots (or at least the oncologist didn't mention any spots) in my lungs, or other far reaching areas. If these 'spots' are cancer (likely they are), they are staying put in my abdominal cavity for now.

So there is the update. Nothing enlightening. No game plan yet. I really hope to have more answers on Tuesday.

Still waiting

2008-02-25T19:20:00.002-06:00

Still waiting for results from the PET scan. I don't know if its psychological or not, but I feel increased pain in my right side, where the mass is supposed to be. I'm hoping its psychological... :)

In other news, I won't get to see the same gynecologic oncologist that originally performed my surgery. Apparently he is not with the 'group' for my insurance anymore. They referred me to a different person. However, the new doc is one that I saw last year for a second opinion, and I really liked her. So I hope that this change is for the best. I am happy that I have insurance, but I really hate the huge run-a-round and all of the hoops I need to jump through! I have an appointment with her for next Tuesday.

So I'm waiting, and working, and worrying, and wondering what the future holds. Those must be the four "w's" of ovarian cancer! ;)

Continue to remember me in your thoughts and prayers please, and my favorite husband too!

PET scan

2008-02-16T12:46:00.002-06:00

Now some of you may not ever have the privilege of having one of these tests. I understand that it is one of the most expensive ones out there. But I am just that special ;)

They injected 'tagged' glucose - tagged with a radioisotope to view how organs and especially tumors uptake the glucose. The machine is more like an MRI - a longer tube. Not good for claustrophobic patients. Anyway there were no obvious ill effects from the injection - I didn't feel anything. However my post care instructions were to stay away from small children for 8 hours afterwards, to prevent them from being exposed to radiation. That doesn't sound very healthy - right?

No results until next week (probably Wednesday). To tell you the truth, I wouldn't mind waiting a few weeks for the results. I am just not that anxious to know what they found.

I am out of town on business again next week. Its a great way to avoid calls from my doctors office... Then, on the 25th, I have an appointment with the specialist who performed my debulking surgery for ovarian cancer. He will hopefully be able to answer a lot of questions, and I'm also hoping that he will perform the surgery to remove this mass, cancer or not.

Oh for my business trip, my boss is letting me drive his hybrid Prius. I have had it for the past two days, and I LOVE it! It is much more roomy than you would think, and fast too. I've been getting nearly 45 mpg for highway driving, which is a huge improvement over the 20 mpg the PT cruiser gets. I highly recommend it for anyone wanting to purchase a car. I think my boss is wanting to replace some fleet vehicles with the hybrids - I hope I'm first on the list!

Update

2008-02-12T20:06:00.001-06:00

The PET scan scheduled for last Friday, was canceled due to machine issues. It was rescheduled for next Friday. At least I wasn't one of the patients that had been injected with the radioactive gunk before the machine broke! Yikes! :) The bad thing is that I really feel this mass inside me now. Part of it is mental, I'm sure - but part of it is the unidentified mass making itself known - a hot, angry red ball (benign? not benign??) inside me.

I am doing much better than I was last week after getting the results. I know I have a lot of fight left in me. Bring it on!

I do wish I could jump forward a few weeks so the answers I seek would already be known, and a treatment plan identified. But life is to be lived now - and I can't afford to lose a few weeks. So I take it day by day, and when the panic and fear set in (which they like to do), I breathe deeply and slowly, and remind myself that this is just the beginning, and not the end.

On a lighter and brighter note:
My sisters wedding went very smoothly. Everyone involved did such a great job - and the ceremony was beautiful (as was she!!). I may have even shed a tear or two, but don't tell anyone!! I wish her and her husband (wow - husband!) the very best that this world and life has to offer.

Sigh

2008-02-06T16:26:00.000-06:00

This post was written on Wednesday, Feb 6, but not posted then due to my sisters upcoming wedding.

Its snowing again. Usually for me, that lifts my spirits. Not today though.

I just came from my oncologists office where I got the results of my CT scan. They found a 4cm x 3cm soft tissue mass, near my liver, displacing my gall bladder. Coming on the heels of six rounds of chemotherapy, this is not the greatest of news.

Of course, they don't know if its cancer. My gut is telling me it is.

I scheduled a PET scan for Friday the 8th. The doctor wants to be sure that there are no other 'masses' to be aware of. After the PET is done, I will also see the gyne/oncologist to get his opinion. Then there will be more surgery - hopefully just to remove the one mass already identified. If cancer, then probably more chemotherapy - with different drugs because the ones I was on obviously didn't stop cancer from growing. If not cancer - then time to celebrate! ;)

Now I just play the waiting game again. I want surgery soon to get this thing out of me. Its just a matter of getting it all scheduled and set.

CT Scan

2008-01-26T21:53:00.000-06:00

I had a CT scan today. No big deal, except for the barium suspension that they make you drink the night before, and right before the scan. I picked the banana flavor (the receptionist recommended it). Yuck. I did try the orange - and I would recommend that flavor for anyone who has to go through this. Full bodied, a nice bouquet, with underlying citrus tones :)

The technician said that they won't have the results for three days or so. I don't really anticipate anything showing up on this scan. A CT scan isn't the most accurate diagnostic tool, and I consider this to be a baseline scan, so any future irregularities can be compared to it.

Still - I want to hear that everything is ok. ;)

Other random stuff:

My favorite husband and I are off on a free trip - one of those promotional gigs, with free air fare and hotel. It couldn't have come at a better time. We really need a short escape.

The shower and wedding stuff is going fine, except now *I* have to find a dress. I am putting it off until the last minute.

I was volunteered to judge a science fair this past week. I really enjoyed it, but it made me feel a little gypped that I never got to do that in school. I am always so surprised at how smart children are. I guess I spent much of my childhood feeling dumb - do kids still feel like that?

That's it! Have a great week everyone!

Not much to say

2008-01-16T20:36:00.000-06:00

My trip out of state went fine. I again see how much energy and strength chemotherapy has taken from me. The exhaustion didn't hit me until the near end of the trip, so that was good. I feel fine (although a little slow) today, so it doesn't appear to carry over from one day to the next.

One interesting thing happened to me on my trip. As I was boarding my flight home, the man taking the tickets said "Have a good flight sir". Then he looked at me, and said "Sorry - the bandanna threw me off". Sir. I had make-up on! I had eyebrows drawn on my face, and not bushy ones either. Lipstick. Eyeliner to mimic my lost eyelashes. And for those of you who do not know me - I am the opposite of flat chested. Oh well - I guess chemo has made me androgynous. ;) Maybe I have finally become the boy/girl I always wanted to be in high school (think David Bowie/Adam Ant). LOL! More likely, the ticket taker was high.

Everything is still busy busy busy. There is a wedding shower and a wedding coming up - and a lot of work to do for that -although my sister is doing a great job of getting things in order! Who knew that she was so organized - honestly - this is a side of her that I have never seen before.

We also have a short trip that happens right before the shower. My CT scan is scheduled right before the trip, but I won't have the results probably until after the wedding and all (unless there is something wrong and they need to contact me sooner).

whew. Who has time to worry about cancer? ;)

Keeping busy

2008-01-10T17:44:00.001-06:00

I have been keeping occupied now that I feel better (and I feel SO much better!). Work has been busy, which is great, because it helps keep my mind from worrying about vague future fragments of time.

In fact I have a quick jaunt to Virginia next week to do a job. I leave Monday night, and come back on Tuesday night. I'm hoping to stop at the Edgar Allan Poe museum - who knew there was such a place!

I have a doctors appointment tomorrow. I wasn't supposed to see him this soon, but he is leaving until the end of January on vacation. I'm hoping that he will at least order the tests I need, even if I have to wait a few weeks to have them done. I haven't been having any problems though, other than being tired all of the time, joint pain and headaches.

I started taking L-glutamine in mid December for the numbness. I take about 5-7 grams of the powder every third day or so (very infrequently). However, my numbness is nearly non-existent now. There are no other side effects from it (for me) either! I suggest it for anyone who has neuropathy from chemotherapy. (but check with your doctor first!)

The rest of the month will be busy too. My sister went from being engaged in December, to planning a February 9, 2008 (YES - 2008!!) wedding. I am happy for her, but doesn't she know how much WORK this is? :) Lucky for us, she is keeping it simple.

I guess this is the official announcement, since she hasn't really told many people yet. So congratulations to L and M!!!

I am going dress shopping with her tomorrow. This is a supreme sacrifice, since I hate shopping! However, she was with me when I bought mine, and in fact found the store for me. I hope that we find a great dress, very quickly :) tomorrow.

Welcome 2008!

2008-01-03T16:43:00.000-06:00

And it couldn't have come soon enough! 2007 haunted us all the way up through New years eve, when we found a flooded basement. It was my fault - since our refrigerator went out I had been wondering which appliance would next choose to die. For those of you who guessed the water heater - ding ding ding!!! You WIN! All we could do was laugh. Laugh and call a plumber. Luckily, we found one that would do it for us on short notice, and on a semi-holiday. I still wasn't feeling well, so I slept through the whole process.

So long 2007
So long cancer
So long costly household expenses (that may be wishful thinking)
So long side effects and chemotherapy
And good riddance to you all!

I am back. Side effects were bad again - but not quite as bad as they had been. That was either due to the extra week of recuperation I had this time for the holidays, or due to the fact that it was the last one - whatever - I don't care - I am just glad that they were a little bit easier to bear. I'm still tired, and expect to be for the next month as these toxins finish the job, knock out any remaining hair on my body, and continue the course out of my body.

What's next you ask? I have to make an appointment with my regular oncologist in three weeks. At that time, he will order a CT or CAT scan and possibly blood tests. Once the scans are done I will see the gynecological oncologist who will also look at them and offer his opinion. Assuming all of that is ok, there will be follow ups - every three months or so I believe.

Right now I don't know quite how I feel - I am still recovering, and I haven't even been back to work yet. I haven't started to process anything yet- but more importantly, I haven't started to worry about anything yet ;)

I will wish you all a happy new year! Talk to you soon!

Apathy, panic and a blessing in disguise

2007-12-29T09:57:00.000-06:00

My favorite husband and I headed out to my last chemotherapy session yesterday for the ovarian cancer. It was snowing, which lifted my spirits a bit- but I was apathetic and tired, tired tired, as the steroids had kept me up much of the night - tossing and turning. He dropped me off, and went to run errands for an hour or so, while my pretreatment would presumably be happening.

The nurse said my CA125 was 25. Another increase. Still within normal limits, but not heading the direction I want it to. Then she told me that the pain I have in my side is a concern to the doctor, and that he did not want me to have the chemo until he had examined me. She said my blood tests were all fine (including my liver enzymes - and the pain is in the area of my liver). Of course, he doesn't come into the office until the afternoon. This freaked me right out! If I didn't get the chemo that day, I would not have it until after the new year. I have had my heart set on finishing THIS YEAR and not dragging it on into 2008. So, I did what any tired, bald and disappointed person would do - I burst into tears. The kind nurse pulled me into a private room until I calmed down (quickly, thankfully!) She told me to come back at 1 - and that I would be the first to see the doctor. She said that they could probably still treat me if he cleared me for chemo.

I called my husband to pick me up - and explained what happened. He also calmed me down - by taking me out to breakfast :) (he knows the way to my heart - that's for sure!) Then we ran some errands (mostly to keep me from worrying about the appointment).

The doc examined me, and couldn't feel anything. I knew it was nothing - and wish I had never mentioned it. BUT because it was in the general area where the ovarian cancer was removed, and because it felt to be my liver, I am glad I mentioned it just in case. I feel like I'm turning into a hypochondriac! :) By this time, it was near 2, and they said they could treat me! YIPPPEEEE! No more apathy regarding this last treatment - now I was excited! Hence, the blessing in disguise part of the title.

I found out during my treatment, that it was the kind chemo nurses who said they would stay late at the office, to ensure that I would be treated. They usually leave at 5, but because of me, stayed until a little after 6 pm. The staff there is just so kind. I think they understood my crazy notion that I had to finish this year - HAD to!

So now the chemotherapy is over, and once the side effects are done (should be better by Thursday), I will be back on my way to normal. Maybe a different type of normal now that I have gone through all of this. Maybe more patient? Definitely more understanding of those with illnesses.

But I know I am not done with this, and won't be for a long time. I have to set an appointment in four weeks to see the oncologist, who will order blood tests, and a CT or CAT scan. Once those are done, another visit with the gynecological oncologist (the expert) for his review and suggestions. I think I will have appointments every three months for a while. Oh - I also have to have my chest port flushed out every three months, to keep it from being blocked. I am glad I picked a place close to home for the treatment! The doc initially said I should keep the port in for five years, due to the high rate of ovarian cancer recurrence. I'm hoping to have it out in two to three years and to never have to use it again for chemotherapy. But, I'm going day by day.

You buy the ticket - you take the ride (Hunter S. Thompson)

Final chemo - and odds and ends...

2007-12-27T19:06:00.000-06:00

Tomorrow is the day I have been waiting for since July and August of this year. My final chemotherapy treatment. I am so excited for it to be over, and I am also terrified. I am terrified first of the side effects that I know I will have. I am terrified that I will find out that I went through all of this for nothing. I am terrified that I will have to go through it again at some point in the future! Ultimately, I am terrified about not doing anything proactive in regards to the cancer, and maybe having it come back.

I am excited that I will get my hair back starting in a month or so. I am excited that I won't have to go through awful side effects every three weeks. I am excited to start 2008 with no chemotherapy planned. I am excited to have energy again, and to start reclaiming my health!

Now for the odds and ends:

I have great family - both mine and my favorite husbands. Over the holidays, everyone was so kind and supportive. His relatives have unfortunately had a lot of cancer touch their lives, and I think it gives them a 'magic touch' when it comes to talking to those of us who have it. I can't even recall the particulars - just good positive energy on Christmas eve eve when we went to his family party.

Of course both celebrations with both of our immediate families were wonderful as well! I was a little tired and cranky for my family (they always get the best of me!) but it went much better after I ate some food. Lately my mood has been affected by hunger. I used to be able to go all day without eating, and be fine. Now I am cranky cranky cranky. Thankfully, they understood, and I still got my presents. ;)

My aunt and uncle changed their holiday plans, and drove here for the holiday rather than have us drive there. This was wonderful - as I certainly would not have been able to make the trip this year (already had taken a lot of time off of work). I am so glad they did - it was great to see them, and I promised them I would make it up to them next year. We had a wonderful holiday visit, and squeezed (squoze?) a lot into a short time. Even though they cheat at cards they are all right in my book!

I have great friends. One talked me down from a near panic earlier this week (I don't even know if she knows it) when I was really stressing out about this last chemo. She reminded me that I have to take it one day at a time, and stop worrying or even thinking about the future - because it won't do me a damn bit of good. She (as usual) was absolutely right, and I thank her for it. I may need a little more reminding JKE (please see the first paragraph of this post!) - so please, keep the insights coming :)

And all my other friends and family as well, who don't point and laugh (at least not in front of my face) regardless of how silly I look in my head scarves, and without eyebrows and eyelashes...

I have found that I am a hair product junkie. I haven't had hair since September, but I still find myself perusing the shelves of shampoos, conditioners and other hair products. Crazy - right? :)

Wish me luck tomorrow - they drew another CA125, and I'll find out the results in the morning. Remember - we want a very low, low number!

Merry Christmas!

2007-12-24T10:10:00.000-06:00

Merry Christmas everyone! The Bears game yesterday was fantastic!! Yes, it was cold and snowy and very windy - but we dressed for it and it didn't bother us too much. Plus, we had access to an interior area where we could go if it got too cold. A wonderful game especially since the Bears won! (sorry Packers fans... )

I even had the energy last night to go to my in-laws family Christmas party (where the whole extended family shows up). That was good - because they had all heard of my ovarian cancer diagnosis and had sent me cards, and I wanted to show them that I was ok. It was a lot of fun and I am only sorry that we didn't get there a little earlier since we missed seeing some people.

I am experiencing some anxiety again about my upcoming chemo on Friday. It is nice to know that it will be the last time this year (and hopefully - ever) that I have to worry about chemotherapy. Its funny what the mind can do - Just thinking about it, I can already 'taste' the chemo, and feel the poison before it even enters my system. Good thing that I have a busy week ahead to keep me from dwelling on it.

I hope you all have a wonderful Christmas!

Holidaze

2007-12-16T10:02:00.000-06:00

We braved the dreaded "mall" yesterday. I am happy to say that we got a lot of shopping done! We aren't finished yet - there are some loose ends to finish up, but we took a big chunk out of what we needed to get.

I am not over-doing it this year. The remaining shopping I have to do - either I know what I'm getting, or picking up gift cards. The shopping really exhausted me though. Not sure if I can rightfully blame the chemotherapy for that, or if I just hate shopping ;)

The good news was that it snowed! We have nearly a foot on the ground now. Of course, we saw a lot of cars in ditches, and off the road yesterday. I'm just glad we weren't one of those...

Normally, I would be having chemotherapy this coming Friday. I am SO GLAD to have an extra week off because of the holiday! I think my body needed the extra recuperation time to recover from the last one. The holidays are a perfect distraction too, to keep me from worrying or thinking too much about the cancer. I'll save that activity until next year. Today is my company Christmas party, more shopping this week, and next weekend is the Bears/Packers game that we have tickets to. PLENTY to keep me distracted!

Happy holidays everyone!

Pocket Kings

2007-12-09T17:41:00.001-06:00

Pocket kings were his downfall. This just wasn't the year for my favorite husband to make his debut into the celebrity world of poker at the heartland poker tour.

He did get to play a while - about four hours before he finally busted out. I know it was a wonderful experience for him! Also, Chris Hanson from the tour (who commented on my blog on an earlier post) came up to the table while he was playing and said hello. He recognized him from the picture on this blog. If you read this - thanks Chris! I think you made his night - and gave him a little 'respect' from other players at the table for a short time ;)

He did so well to get into this tournament - and I am very very proud of him.

On a different topic - we went out and bought a new refrigerator today that will be delivered on Tuesday. I look forward to having a clean, new fridge. Any bets on how long it will stay that way? ;)

If it ain't one thing...

2007-12-08T09:25:00.000-06:00

it's another. We came home last night to find our ice cube bin filled with water, and a warm freezer and refrigerator. Hmmm. My favorite husband cleaned what he could to see if it was just the coils or other problem, etc. No such luck. I guess it is probably the compressor.

It looks like our Christmas gifts to each other this year will be a new refrigerator. Thank goodness for good credit and places out there that offer free financing for a while. At least we didn't have a whole lot of food that was ruined. It is actually a good reason to get rid of a lot of stuff (especially in the freezer) that has been there longer than it needed to be ;)

Other than that, things are going well! I am feeling much better now. I went to work Thursday and Friday - but probably should have just stayed home on Thursday. I am still really tired and my energy level isn't what it used to be. I just need to accept my limits, and try not to push them too often. It is really frustrating to not be as 'able' as I was, even just a month or two ago! Patience - I just need patience.

Chemotherapy is tricky. "Cumulative" is the key word for anyone about to undertake it. It wasn't until the third and fourth treatments that I started to realize what I was really in for, and each time has been progressively worse. However, each time I am learning to better deal with the side effects, and what I can to limit their severity. It is all a learning process, and everyone handles it differently.

I have also been thinking about my ovarian cancer diagnosis, and how extremely lucky I was that I started having symptoms that sent me to the doctor. It felt like my appendix was inflamed, or about to burst (that's the best way I can describe the twinge I felt in my right side that finally sent me to the ER). I had no other real definable symptoms. I have been reading about women who never knew or had any symptoms of ovarian cancer, until it had really spread - and those women didn't generally last long (although there are always exceptions!). Granted, I wish I had symptoms sooner ;) but I am glad that I had any at all. The cancer was discovered in enough time to give me a fighting chance. Many others have not been as lucky, and I feel for them and their families.

OK- enough 'cancer perspective'. Have a great weekend all!

Proud

2007-12-05T12:05:00.000-06:00

We take a break from our regularly scheduled documenting and whining about ovarian cancer, for an important announcement.

My favorite husband parlayed a $20 bill, into an entry into the Heartland Poker Tour (HPT)!! He won a small tournament, entered a super-satellite and won that for an entry to the satellite, which he made it to the top 20% in order to win a seat to the main event! He is amazing.

http://www.heartlandpokertour.com

He will be playing Saturday night at the Majestic Star Casino, and hopefully playing Sunday, and finally Monday, when the final 6 players compete. That final table will be televised.

It has been a dream of his to compete in a large scale tournament of this sort. But we certainly could not have afforded the $2,500 entry fee! I just wanted to say how proud I am of him, and his skills. Congrats honey - and good luck!

Snow!

2007-12-01T19:46:00.000-06:00

I got to see some snow this morning! It was beautiful. Now, it has just turned to icy rain, but it is dark so it doesn't matter. I hope for more snow tomorrow. I also hope that the Bears win - a girl can dream, can't she??

I don't feel very well today. I have my usual, day after chemo, rash. That is a typical symptom. I have an awful taste in my mouth - another typical symptom. I can eat apples and tomato based products (pasta and marinara sauce, etc.), but everything else tastes funny. Even water tastes funny - which is bad because I need to drink as much as possible in order to flush the toxins OUT! I have been drinking cranberry juice - that tastes fine. My hip joints really hurt - that is a symptom that has been getting worse each time. And finally, a flu-like headache, general malaise, and the ongoing nausea. Honestly, I'm not whining - just documenting! ;)

After a few more days, I will feel better. Then, I will only have to go through this one more time! It is hard to believe that there is a light at the end of the tunnel. My dear friend told me that 'there is a light at the end of the tunnel - just don't run into it and get hit by a train.' Actually, I think she said it better. I just don't remember the exact wording.

You will also notice that I will be using the term 'ovarian cancer' more frequently, so people who are trying to find info about ovarian cancer via a blog search may be directed to my blog. (see, I slipped the term ovarian cancer in again! You barely noticed!!)

I'm tired - so I am going to lay back down on the couch. That is where I will remain for several days. Good thing it is comfortable, and there are plenty of cats around to keep me company.

I'll report back in a few days when I'm feeling better.

(ovarian cancer!) ;)

Chemotherapy number 5

2007-11-30T17:45:00.000-06:00

It went fine. I did feel nauseated during the taxol part of the drip (three hours of wonderful, queasy, nausea!!). The nurse said it was probably due to the toxic accumulation from the therapy. She gave me some additional anti nausea medication, which I will gladly take.

Now I am just sitting at home, still slightly nauseated, and burping. Oh yeah - that has been another usual side effect. It is because the chemo kills the cells in the lining of the stomach and esophagus, and any other fast growing cells in the body. I have been trying to burp the alphabet - but I haven't got past "d" yet. My favorite husband lovingly (I hope!) calls me Barney from the Simpsons, because of this side effect. Thankfully, it only lasts for about five days or so.

The side effects are definitely starting sooner. I'm already super tired and nauseated (even with the medication), and I have a sore and swollen throat (again, from the cells dying). I guess that my body is getting acclimated to the steroids, because my energy level is really down now too. I doubt I will be very mobile this weekend. Oh well - its hopefully going to snow, and I can look out the window from the couch to watch it! I DO hope that it snows and snows and snows some more. I really love snow! (really? YES REALLY!) Plus it will cover the leaves remaining on our lawn... ;) Also, I like to believe that the side effects are indications that the ovarian cancer is being targeted and killed.

The nurse told me that I could donate the Amitriptyline medication to them, and that it would get used. That is good, because I didn't want it to go to waste. This was the antidepressant medication that was prescribed for the numbness and tingling (neuropathy) that I get from the chemotherapy. She did recommend that I hold on to it for now, just in case the neuropathy gets worse. She said that it HAS helped other patients. So there is still a chance that I will take it if the symptoms get worse. I hope they don't. I really don't want to take medicine that will also affect my mental state. So far those symptoms haven't gotten worse!

Have a great weekend! Say a prayer for me if you get a chance! More importantly, say a prayer for my favorite husband, who has to put up with me for the next four or five days. ;)

Another appointment

2007-11-27T17:46:00.000-06:00

Those of you paying attention will remember that I had a gynecological oncologist appointment Monday. He is the one who 'optimally debulked' me (removed as much cancer as could possibly be removed), and probably the one I will ultimately thank for saving my life.

Anyway - I didn't write anything about it, because no new pertinent information was provided at the exam. He just said I'm healing fine, I look good (well - THANK you...), and he wants to see me after chemo is done.

That is the current state of things. I will know nothing more until all the chemo is done. Wait, wait, wait. Then wait some more. I am in a medical limbo. They will give me a CT scan after chemo - but not until at least one month after. They will monitor my CA 125 - but not until after chemo. I will continue on with my life - after chemo.

At least by going through chemo, I am actively fighting the disease (I hope). At least by finishing chemo, I will feel as though something has been completed. Of course, there are no guarantees. Can you tell I'm confused?

I think the hardest part for me is the fact that cancer will always be an unanswered question. Do still have it? Will it come back? Is the ovarian cancer hiding, waiting for me to feel safe, only to crop up in a cozy place like my lungs or liver?

The closer I get to finishing chemo, the less stable I feel.

Happy Thanksgiving!

2007-11-23T12:34:00.000-06:00

I'm still feeling great! The next one is on Friday (my second to last treatment). I'm trying not to think about it, and just enjoy the long weekend.
I hope that you all enjoy it too!

Happy Birthday to my favorite husband!

2007-11-17T08:11:00.000-06:00

We have always been strong, and this year has made us stronger. You bring me joy every day. I dedicate the following poem and quote to you from my favorite poet (cheaper than a gift - right?) :)
I love you - happy birthday!

i carry your heart with me

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)

i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

-e.e. cummings

The most wasted of all days is one without laughter.
-ee cummings

At the oncologists

2007-11-14T19:59:00.000-06:00

Another good report. He still says I'm 'breezing' through this. I told him he should have seen me two days ago... :) He is very kind - and he said that he is sorry that I have to go through this. I've found that many doctors are not compassionate - he seems to be.
He answered most of my questions. No more CA125 tests until the treatment is over. He was not concerned about the slight increase in number the last time. He's not worried about the kidney pain (thinks its associated with the neulasta). He will not talk to me about follow up treatment until after my treatment is done.
Most importantly, he allowed me to move my last treatment to December 27th or 28th (I'll have to check with the chemo nurses for an opening). He said I could even wait until after the new year, but I want to get these done before the new year as I had previously planned. Yes - he said six treatments should be sufficient and he will NOT be adding more treatments! That is such good news to me! In the darkness of this past weekend, I started worrying that I might only be half way through if he decided on 8 treatments. I am so glad I don't have to worry about that now!
I'm still tired, but I am feeling buoyed by the knowledge that I only have two more treatments left!

Side effects

2007-11-13T19:44:00.000-06:00

Those words sound so innocuous. When I used to think of side effects, I thought, a headache, maybe some nausea - you know - minor issues that are easy to overlook and ignore. I have come to find that side effects are not so simple or easily discounted.
I told my favorite husband on Sunday that I don't know how much more of this I can take. In that moment, between tears, I fully meant it. I just didn't think that I could take much more. I don't know if it was the pain or feeling sorry for myself, but Sunday was hard. I can't even describe what is so bad about the side effects. Maybe it is the sheer quantity of them-all piled on at once with no relief. Maybe its the emotional aspect of going through chemo and knowing that I am doing this to myself - I am to blame for these effects.
I am happy to report that I feel much better today. I'm not 100 percent, but I feel so much better, and no longer poised at the brink of despair. :) I just have to remember my mantra - if I can hang on just a day or two, everything will be so much better!
I have my oncologist appointment tomorrow, and will let you know how that goes. For now, I am just so happy to be feeling better (even though I am still 'couch bound' for the most part).
Now I promise - no more whining until the next treatment!

Number 4

2007-11-09T18:24:00.000-06:00

Just got back from chemo number 4. It will be my 2/3 point (although I won't consider it to be at that point until after the side effects have gone away sometime next week...). So hopefully on Wed/Thurs - I will be 2/3 of the way through!

I'm tired. I've noticed that I've been tired. I could blame it on the chemo, but I am going to blame it on the weather (although fall is my favorite type of weather...). Hmmm, maybe I'll blame it on the time change! I do know that lack of sunlight affects many. Could be all of the above.

I spoke to the nurse again about my neuropathy (the numbness in my hands and feet). She gave me a prescription for Amitriptyline. Once I got it, brought it home, and googled it - I find it is an antidepressant. Antidepressant??? I'm not depressed! I'm tired and bald, but certainly not depressed!! :) From what I found, it may 'mask' the symptoms. Blah. I don't want to mask anything (except extreme pain, thank you vicodin!). I can live with the numbness, it doesn't hurt, it's just annoying. And I could do without the extra side effects of this antidepressant - some of which are similar to ones I already have (hair loss, insomnia, etc.). Finally, I don't want to take more pills - its just more of a strain on my system and my liver.
So, I have an appointment with my regular oncologist on Wednesday late afternoon. (The following is being written mainly as a reminder to myself - because I have a memory now the capacity of a pea). I will ask him if the antidepressant can cure or prevent further neuropathy. If not - I won't take it. I also need to ask him about some kidney pain. I need another CA125, and I need to ask if the increase is something he deems significant or not. Most importantly, I need to find out if he is planning to sneak additional treatments in my plan. OH - and I need to change the date of my (hopefully) last treatment, because I think I am going to the Bears/Packers game that Sunday, and I want to be able to enjoy the game and Christmas, without being sick.
I have an appointment with the gyne/onc (the specialist) on Monday after Thanksgiving. That will be good - I need to run down this treatment with him, and hear what he suggests.

Thank you for bearing with me on that last part :) Chemo brain is a true symptom. Sometimes, I find myself sitting and staring at nothing - not knowing that time has passed, not thinking about anything. Its a very strange sensation for me. I have never had a good long term memory - but my short term for things I want to remember, was always excellent. Not anymore! Stupid brain (said in my Homer Simpson voice). ;)

Have a great weekend! I'm going to try to...

Life and loss

2007-11-06T21:08:00.000-06:00

There is a funeral I am going to tomorrow. I mentioned my friend in an early post in September. She was a breast cancer survivor who graciously loaned me her box of turbans and headwraps when she found out I was going through all of this. She passed away - thankfully NOT of cancer (I'm sure she would agree with that statement. It did not beat her in the end!) but due to medical complications from something else.

I remember when she went through her chemo treatments. I didn't see her often, but she looked so good, and was always smiling when I did see her. She rocked those turbans- and the pink ones really lit her up. I thought she never had looked more beautiful. Little did I know at the time, that her experience would be one that strongly influenced my outlook when I found out my diagnosis.

When I found out about my cancer it was after she had beat hers, and had all of her hair back. I thought "Beverly went through this so well, and is doing so well now - I certainly can beat it too!". I even talked to her about it . She told me how losing her hair was the hardest thing for her, and how she cried as she threw the garbage out the day it fell out. Her openness with her experiences through chemo helped prepare me for my treatment- more than any website ever could. For me, she was the face of experience, bravery and strength.

I will miss her, her smile, and her infectious laugh.

Sorry

2007-11-02T21:37:00.000-05:00

Sorry that I haven't posted in a while. I'm feeling good, and there is nothing for me to bitch about ;) Hence the blog silence.
I am feeling a little pre-treatment anxiety for the next one (next Friday), but it's nothing I can't mentally talk myself down from.
I hope that all had a good Halloween!

clawing my way back

2007-10-25T20:05:00.001-05:00

I see the light at the end of the tunnel! I was back to work today, but was so tired, tired, tired. I'm still not 100%. For this treatment, my side effects started earlier (Saturday evening), and are lingering longer. But who cares - I'm good for another two weeks!

Blech

2007-10-21T10:54:00.000-05:00

It looks like a beautiful day outside, from my vantage point laid out on the couch. I love fall days. I wish I were out walking, or riding my bike, or even raking leaves. I have pumpkins to carve, and work to do, but no energy and no 'ooomph'.
Blech.
Just a few more days. Just a few more days...

Halfway through - or not?

2007-10-19T17:56:00.001-05:00

Chemo went fine today (as usual). I did get the results of my CA125- not bad news, but not good news either. It went up from 19 to 21. It was 19 before I even started chemo. After these two sessions of chemo, I had hoped that it was going to be much lower - so that was a small disappointment today. However, considering that it was 321 before surgery, and 192 immediately after surgery, and normal range is below 35, I guess its still ok.

The other news I got from the chemo nurse, was that the doctor often extends the 6 treatments to 8 treatments in patients with ovarian cancer, who are young and healthy. Young? Me?? ;) Yes - she said. I am glad that she told me that. I had my heart set on finishing this year, but if that is not to be, its ok. I would rather know of that possibility now than to find out after my fifth or sixth treatment. So maybe I'll be celebrating the Chinese New Year (guess I'll have to Google the date of that!) instead of the usual New Year. However, extended treatments are not a sure thing yet. I want to do everything I can to cure this, but I also don't want to keep doing these treatments if they don't seem to be helping. I have an appointment with the oncologist after my next one, and I'll talk to him at that time (especially about the CA125).

Well, I did start taking the b-complex vitamin and the glutamine. If that doesn't help with the numbness, then I will take writer's advice from my previous post and ask about the pills she suggested (whoosh - the name of it just flew out of my head! Glad I have it in writing ;))

Guess that's it for today - have a great weekend!

Oncologist appointment

2007-10-16T20:05:00.001-05:00

I had an appointment with my oncologist on Friday. He said (and I quote) that I'm "breezing through" this chemotherapy. Well I'm glad HE thinks so! I am pleased that things are going relatively smoothly. He said that my blood tests have been better than his, and that's after having chemo. Guess thats because of all the clean living I've done! ;)

I did tell him about the numbness in my hands and feet. He suggested I start taking a b-complex vitamin, and if that doesn't work, to start taking glutamine. Sigh - more pills.

He will be testing my CA125 this week before chemo (thats a blood test for the protein created by the tumor - I want it to be very very LOW) .

Oh yeah - my 1/2 point chemo is on Friday! At this point next week I will be halfway done. It does feel like the time has flown by.

It is really strange, parceling my life into these three week increments from treatment to treatment. I just get back into the swing of work, and then I'm off sick again. The months are passing, but I just look at the calendar to determine if I will be "well" for upcoming holidays and events.

My favorite husband and I had a good time this past weekend. However, the trees in Michigan had not changed color yet. Maybe we can go back in a few weeks - I really love fall colors! We did hike on Friday and Saturday - climbed some sand dunes, and walked by the lake. The memory of the fresh fall air will get me through this next treatment.

Out of town

2007-10-11T21:48:00.001-05:00

We are leaving for Michigan on Friday - hopefully to see some fall colors, and breathe some fresh air! It is our substitution for our yearly vacation and wedding anniversary trip. Well, a mini substitution until we can 'properly' celebrate once all this chemo is over. Our anniversary isn't until the 18th - but my third chemo (my halfway point!) is the next day so it would be hard to celebrate next weekend.

I hope everyone has a great weekend!

(and those paying attention will note that I haven't mentioned the Cubs - and I will NOT mention the Cubs - so please do not mention them to me... :) )

Toxic

2007-10-05T23:31:00.000-05:00

Its a great feeling to know I am going to feel fine for the next two weeks. Those 'down' days really make me want to utilize the good ones! So, yes - feeling fine.

I am having some side effects that I didn't want. I notice numbness in my left hand and foot. Its like the feeling right before a part of your body "falls asleep", except that it just remains in that odd, numb, nearing tingly state and no amount of movement wakes it up. Its not from lack of circulation, but an actual effect on the nerves. Ah, well - I'll talk to the oncologist about it when I see him in a week.

I wonder about just how wise it is for me to put all of these toxins in my body-toxins so harsh that they can't touch your skin. But you hear the word 'cancer', and you just go along with the flow. It was presumed that would be the course of treatment. I didn't research any other treatments, or other options. I didn't even ask. I guess we are all so programmed to automatically think chemotherapy when cancer is a diagnosis.

But I should have at least asked.

Whew

2007-10-04T20:38:00.000-05:00

I am back on the upswing. Monday and Wednesday were really really bad - but now it is Thursday. :)
I'll update more later, but at least I am good for a couple of weeks.

CUBS TAKE THE PENNANT! Oh - and my second chemo.

2007-09-28T23:37:00.000-05:00

Priorities. The Cubs won their division tonight! WOO HOOO!!! Something special seems to happen so far, on every chemo day. My first was done on my dad's birthday, and ovarian cancer awareness day - and now this for my second chemo.

I feel great - I'm all hopped up on steroids. If things go like last time, I will be awake and alert through Saturday night. The downslope will begin Sunday afternoon through Tuesday. At least now I am prepared for it. I know that giving myself the shot tomorrow will be easy. I know that I will have severe bone pain. I am ready for those now.