When I got to Dr. E's office yesterday, I found out that he was stuck in surgery and that I could be seen by Katy for my post-op visit if I wanted to. I think that actual steam might have been coming out of my ears at that point but I managed to retain my composure and took a seat in the waiting room. Shortly thereafter, I was called back to see Katy and she was her usual comforting self while she gently removed my staples and listened to me bitch about the fact that I had many questions for Dr. E that I'd wanted to ask during my appointment. Fortunately, shortly after Katy left the room she came back to let me know that Dr. E had just returned from surgery and would be able to chat with me for a little while if I was willing to wait. Well, since I had dragged my patient advocate (Melissa S.) out there with me, I figured I might as well. Fortunatley, we didn't have to wait too long to see him. So, here's the outcome of our visit:
- When we walked into his office, Dr. E was grinning from ear to ear while he reviewed my pathology report. I don't know if it was the first time he'd seen the report or not but he acted as though it was. He was "shocked" to see that my right ovary had had no cancer in it when it was removed because of its physical appearence (remember the bloated dead mouse image?) but still pretty ecstatic about it nonetheless. Oh, and speaking of shocking news, I was shocked to learn that I only weigh 114.5 lbs these days. I haven't weighed that much since before the "freshman fifteen." Thing is, I really don't know how I'm going to put any weight back on since I think this is what I'm supposed to weigh when following an anti-cancer diet/lifestyle. Something else to ponder...to be extremely thin or not to be?
- Next, we discussed what we thought my official diagnosis really is now that he/we had all of the pathology. After a little more debate, we agreed that I have really do have synchronous primaries: Stage IIC/IIIA ovarian cancer (there's a very thin imaginary line between my abdomen and pelvis separating the two diagnoses) and Stage I uterine. That's it. That's the final answer.
- Then I brought up the favorable odds people with my diagnosis have versus those with singular ovarian cancer, which is also when I told him how he'd upset me by bringing up negative odds in the hospital. He agreed that I should have about an 80% chance of five-year survival. However, at the same time, he also cautioned that I have about a 50% chance (maybe a little higher actually) of a recurrance within five years. (If you don't understand the overlapping stats, here goes: I will probably still be alive in five years but could very well be alive fighting a recurrence of the cancer if we don't knock it out this time.)
- Given those odds and my youth, we have decided that it makes the most sense for me to endure (yes, endure really is the right word for what about I'm to lay out) three rounds of IP/IV chemo.I will go into Fairfax Hospital next Monday, July 27 to have my chest port inserted and I will go back on Thursday, July 30 to have my abdominal port inserted. Both are outpatient procedures for which I will be sedated. On Wednesday, August 5 I will start my final three, 21-day cycles of chemo, which will be extremely intense and will not end until Wednesday, September 23. See below for my schedule:
Day 1 (August 5): 24-hour Taxol infusion via chest port; will be admitted and spend the night at INOVA Fairfax
Day 2: Several hour CisPlatin infusion via abdominal port; will be discharged after finishing the infusion
Day 3: Hydration therapy and shot of Neupogen to boost white count; both occur at INOVA Ffx
Day 4: Neupogen shot; hopefully, will be self-administered at home
Day 5: Neupogen shot
Day 6: No scheduled treatment - AMEN!
Day 7: CBC/BMP labs
Day 8: 8-hour Taxol infusion via abdominal port; will spend the day at INOVA Ffx
Day 9: Hydration therapy and Neupogen shot; again, at INOVA Ffx
Day 10: Neupogen shot
Day 11: Neupogen shot
Day 12: Neupogen shot
Day 13: Neupogen shot
Day 14: CBC labs
Day 15: No scheduled treatment
Day 16: No scheduled treatment
Day 17: No scheduled treatment
Day 18: All labs
Day 19: TBD
Day 20: TBD
Day 21: TBD
Day 22: REPEAT ABOVE
Day 4o-something: REPEAT ABOVE
Day 63: Thank God that it's all over!!!
Day 73: Serve as maid-of-honor in Ali's wedding in Quechee, Vermont!
Sounds like a good time, huh? No, I know it doesn't. And it won't be. But the ONLY thing worse than all of this would be getting cancer again because a recurrence would mean that I likely would never be "cured." That doesn't mean I might not live 5, 10, or 30 years but I'd be battling cancer on and off for the rest of my life and that really doesn't seem like a good time. So, yes, this is insurance chemo. It's the strongest, harshest regimen out there for this kind of cancer but I think I've got to try doing it. And if I can't take anymore after a cycle or two then I'll switch back to plain IV for the last cycle or two and that will be fine too.
So, that's the final analysis folks. Wish me luck with the next two months of my life. I think I'm gonna need it.
I’m so happy to hear that the prognosis is as good as we expected. The chemo sounds grueling. My jaw is sort of hanging open right now. Time to help you brainstorm some positive distractions...you know I'm here for you!!
ReplyDelete- Alison
Hey Jen, I know you can take it and you are being smart to go for the most effective treatment up front, as yucky as it is. Your pathology report news totally rocks. Thinking of you! Elena
ReplyDeleteJennie, I'm so happy to hear about the prognosis. You are so incredibly strong and you will get through this treatment. I think about you every day and am sending positive thoughts your way. Hope to see you soon, Melissa
ReplyDeleteMy Dearest Cousin...don't let anyone else know that... I'm sitting here in NJ during my week long intensive training in NYC as part of my integrative therapy program. I am totally isolated from the "real" suffering world out there and I think to myself, why am I not by your side treating you with all the wonderful tools I am learning. I don't know what it's like to be you and going through mutilation, humiliation, frustration, and aggrivation which comes along with your "project". So, I'm not sure what to tell you or say that could possibly bring you ease or relief... but I constantly wrestle with the notion of putting my job on hold to be by your side, cause I know that we could ease your suffering even if in some small way I know that we together, could make a difference. I just wanted you to know that I love you and if you need me I can manifest it, I will be by your side.
ReplyDeleteyour cousin
My thoughts and prayers are constantly with you. May you continue to push through and stay strong. Love, Jori
ReplyDeleteIs there a limit on how much I can write on this thing? I was going to send Jennie and email as I usually prefer (unless I have a concise morsel for the blog), but since her life is an open book at this point, I figure I'll just go with the flow. Right now, I'm sitting here with a tube taped to my cheek that goes into my left nostril and down into my stomach; the other end is attached to this little computer-pack that's monitoring acid production from my stomach over a 24-hour period. It's a test to see whether I have laryngopharyngeal reflux (LPR), which could be the cause of some chronic throat clearing I've been experiencing. I voluntarily opted for this diagnostic test, rather than taking Prilosec for 6 months to see if that helps my symptoms (which if it does, means I probably have LPR, but if it doesn't, it means I just took a drug for half a year that I didn't need). It's been a lot more uncomfortable that I was lead to anticipate - every time I swallow, I feel a pinch in my throat, so it's been very difficult to replicate my "normal routine" of eating a drinking, and falling asleep last night was very challenging (think I finally did around 3am). Anyway, the point of me telling you this is because as I was sitting here complaining about my discomfort, I was reading this post about what Jennie has to go through this summer. And I thought - Jennie has to get two holes in her body for her chest and abdominal ports. And this is on top of everything she's already been through, and this is the beginning of some serious chemo and more bone-pain causing Neupogen, shots of which she will give herself (she hopes!). And all of this is not optional. So, it really put my measly, voluntary 24-hour only, tube in my throat thingy in perspective. On top of that, as many of you know, Jennie will be my Maid of Honor in my wedding on October 3 of this year, and she has been planning my bridal shower/bachelorette weekend amidst all of this, as well as helping me stay on track with the planning milestones and giving me her advice/opinions along the way. Although, at the beginning of all of this, I gave her an "out" of her MOH duties (I would never have denied her the title), but she insisted on continuing to help with the wedding planning. So, Jennie, I'm so glad that by Day 63 it will be over (and we all have faith it will be for good), and that 10 days later, you will be there to walk down the aisle and stand at my side on my wedding day! It will truly be a day of celebration - we'll both be kissing something good-bye, and hopefully for good (me, single-hood; you, cancer). Thank you for being such an inspirational and wonderful friend. Wedding titles aside, you are a friend truly worthy of honor.
ReplyDeleteLove,
Ali
Hi Jenn,
ReplyDeleteJust got back from out of town with my family. Always thinking of you and saying lots of prayers. You are strong and positive and everyone sees that.
Love,
Carmen