Celebrations

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! :)

18

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!

Rising anxiety

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

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 :)

Inauguration and Vaccine

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

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

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

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 :) )