Friday, February 25, 2011

February 25

Well I didn't get a fifth dose. Four were all my body could handle this time. My doctors were very happy that gave me a total of 14 doses though, so I believe good news is on the horizon. Also, my TIL cells are growing!  So that is fabulous news. This round of IL-2 was a lot more difficult than the first.  I didn't have hallucinations and the horrible headache that I did last time, but I feel like I have been run over by a truck. Also, because my blood pressure and urine output decreased so significantly, I was hooked up to all kinds of monitors, including a blood pressure machine that automatically took my blood pressure every 30 minutes, electrodes monitoring my heart, and a catheter. Because I was hooked up to so many things, I was confined to bed.  And while some of the symptoms were different this time, the diarrhea remained.  Which meant that I had to go in a bed pan about 20 times a day and someone (whomever was my nurse at the time) had to clean me. This was by far the most embarrassing part yet. A number of the nurses were consoling me and telling me it's just part of their jobs, but still, the indignity was horrendous. The ICU is a little different than the regular unit (or as they all it "the floor"). Every room is private and there are funny toilets right in the rooms without doors or curtains or anything. But I  guess most people aren't able to get up and use them, so it would be wasteful to have regular bathrooms. This time I can hardly eat anything - the nausea is worse and I was so afraid that I would have to use the bed pan that I was wary to chance it. Finally yesterday around 6:00pm, I was able to come off of the blood pressure medicine, and then this morning they removed the catheter. So now we are waiting to be transferred to the regular unit. Dr Phan said I would be in the regular until for a few days. But one exciting thing is that we already know I'm getting another private room, so that's fantastic.  Right now my arms and legs are extremely painful and my skin is peeling off my face and back again.  I think it's going to happen to my legs as well, but we shall see.  I feel pretty good, considering, and am hopeful for another fast recovery. I'm also excited at the prospect of a shower. After this one, we wait 3 weeks and then get a scan. If the scan shows the IL-2 is working, then I have to do this twice more. If not, then I guess we'll do the TIL cell treatment. The other night, when Dr. Hong was telling me that my cells were growing, he also mentioned that I had unique protein in my tumor called MAGE (which Dr. Schaub told me during the first round).  He said, "You are golden.  We have so many options."  And for that I am thankful. Next up is medication to help me lose the water weight - I'm guessing it's about 20 pounds this time, but I haven't been weighed so I'm not exactly sure.  Then we just wait out the recovery a little longer until we go home. I wish I were home now, because my cousin and his family are visiting from Boston, but I'm glad they are getting to spend time with Kai (who, by the way, slept from 9:00pm until 6:00am last night!).

Today I am thankful for the wonderful nurses in the ICU (Lori, Jackie, Heather, and Evette) who, in my opinion, went above and beyond the call of duty to help me the past few days; the always fabulous nurses on the regular floor who are pulling for me and whom I am excited to see again shortly; milkshakes from food services, which are sometimes the only thing I can tolerate; the beautiful sign of support from MMG that is hanging in my room giving me strength; my fabulous friends and family; and as always, my absolutely terrific husband Jeff who slept overnight with me in the ICU, and our most perfect baby Kai. Keep up the good work, my love, learning to sleep is only the most recent amazing thing you've done. I look forward to seeing a lifetime of more amazing things.


  1. Indeed. You ARE golden! xxxooxxoxoxoxoxo

  2. Always praying for you! You are a fighter! You won one more battle!

  3. Keep on fighting Jamie! Your strength is amazing. We are all cheering for you and know that you will beat this. Sending lots of positive thoughts your way. Hugs!!!

  4. You did "your best" and your options seem to be improving. 14 rounds is usually almost a total fight, but you seem to be headed for a marathon of rounds. You are truly amazing, young lady. Keep the faith. You've got an army following you on this blog. You can't lose with the army behind you.Keep on keeping on. God bless you and yours.

  5. You are no everyday miracle. You are a miracle every day. I'm sending love and strength -- and I hope your cousin can give you a hug from me! Love you, sweetie. Aunt J.

  6. Ahhh, the dreaded bedpan. I am going to post something now that will hopefully provide you with a smile or maybe even a chuckle or two...
    Hate to tell you sweetie but for most people using a bedpan never gets easier or less humiliating. My Grandma was the toughest cookie out there, not much rattled her. She was in my life for 40 years and the ONLY time I ever saw her cringe at anything was at age 96 when she had to use a bedpan. Now keep in mind, this was also a lady, no let me change that to woman cause my Grandma was no lady ;-), at age 96 who did not give a crap about what other people thought of her or whether or not she was minding her p's and q's. But put a bedpan under her and that bravado went right out the window!
    Now that said, here I am on a Saturday morning googling "inventor of the bedpan". I'm thinking this is information you should know right now. The best I can tell it was invented by William M. Searby in the late 1800's. It actually says he invented the "functional bedpan"... really? A bedpan is not that complicated. What would one look like that was not functional? Anyway, I digress. I tried to find a photo of him to complete this informational session but have yet to find one. I guess I wouldn't want my photo shown next to a bedpan either... :-)
    So, hang in there, do what you gotta do, and as always...
    lots of hugs and love, Judy

  7. Am so excited that you made it through round two. You are a fighter. With so many people praying for you, this has to be successful.

    I can't believe your baby slept for 9 hours through the night. See, even he is pulling for you by doing everything that he can to make your life easier.


  8. Now let's see--Kai is sleeping through the night, and he's just 4 months old. To me this is a major and astonishing miracle. There's no way you won't beat cancer and recover--if you've achieved this first miracle, certainly all other ones will follow.

  9. Jamie, I lost your website and had to go back to Sharron Doherty's facebook page to find it. You've been on my mind for the past few weeks and am so happy to hear that you are hanging in there during your treatments. And better yet, you have wonderful options. There's truly no better news as you know.

    Hang in there and keep up the fight and your awesome attitude. I thought I would pass on a link to a video from my cyber friend in CA who is beating metastatic melanoma. It's inspiring and hopeful.

    Will continue to check on you! Prayers to you and look forward to holding your wonderful baby boy soon.