On Tuesday, I needed an long infusion of Igg because after looking at my immunoglobulin panel, it became clear that I have no or few working normal immunoglobulins. I may rewrite this post when able with explanations because this is the 4th day of a 40mg dex pulse and I’m incompetent as hell today as a writer, but for now, accept that the results of the Igg test, not normally used by light
It was 4 years ago last week that a hematologist told me “You definitely have multiple myeloma.” I wouldn’t wish that phrase on anyone, but I am happier, surrounded by more friends and know life would not be as fulfilling if he had not uttered it. Of course the countless hours spent dealing with all things myeloma is not always met with enjoyment, enthusiasm and passion.
The wonders of Revlimid continue. It has been 17 cycles, 70 weeks, of response. Stable is grand.
After one cycle of Revlimid my dear “strange attractor” friend shared some lab results with me this morning. I quote:
The concentration of the paraprotein in the far gamma region, previously identified as an IgG Kappa has decreased…
Compared to the previous study, urinary total protein has markedly decreased from…
I’m smiling today. :-)
My dad received his stem cells back a week and half ago. Everything went well, except for the DMSO smell (stem cell preservative). I will never eat corn chowder again! We will wait for his cells to engraft and hope that it will help bounce back his platelets and rbcs. Couple of days ago, my parents went to the NP again. His m-protein results from a week ago remained the same. YAY! He also got some platelets and rbc.
Overall, my dad is doing well, he remains active! I love how he cooked and cared for me during my winter break. It feels extremely good to feel like a kid again. :) I love how he stole my Christmas present (a snuggie) from bf! I love how he made a big deal out of dinner whenever my bf came to visit. I love how he made the most delicious food because he feels that I am deprived of food at school. I love how he lectured me about having a irregular sleeping cycle. I love how he didn’t understand that I am a college student and I do not have the luxury to sleep whenever I want. I love how he forced to eat lunch. Man, I feel like I am in high school again! I LOVE HIM! :)
And as for me, this is my second week back to school and it’s already kicking my behind. I planned to attend the lymphoma and leukemia ASH recap conference, and I have company this year! Last year I went alone and it was pretty intimidating, especially since I went alone but nonetheless I had a great time.
Almost every year of college, thalidomide, is mentioned in at least one of my classes. Did you know they are studying the treatment of crohn’s disease (i think it’s crohn’s disease) with thalidomide? In developmental nutrition, the professor showed extensive pictures of birth deficits due to thalidomide. It seemed that thalidomide affected different disciples in different ways, but it all comes down to the 1960s newborns. In many European countries and Canada, many pregnant women used thalidomide for nausea and sleeping aid. Babies were born with shorten/disfigured limbs, so it was soon banned in the drug market.
It is pretty amazing how thalidomide changed the treatment of myeloma. Because of it, we have Revlimid and soon Actomid (pomilidomide) available. I believe things happen for a reason, we may experience set backs but in the end…everything will ok. We may not see it, but know somehow someway it will be alright. I know positive thinking maybe hard at times, especially when all you see is darkness. Who am I kidding, I am the most pessimistic person out there! In all honesty, I have gained so much from my dad’s diagnosis, of course, I would prefer it not to happen, but I have to make sense of it in one way or another. It is what it is.
A quick yellow post-it
Looking for the first yellow signs of 2010
Stem Cell Transplant:
It was an odyssey. A trip to the core. The marrow had its way. Now I’m full of cheerful stem cells, like fields of sunflowers I travel inside and watch them turn their small, yellow faces towards me. They giggle and beam.
Go forth and multiply.
I am thankful to the care and attention I got at Henderson Hospital in Hamilton. I will write more.
Thankful to my father. Yellow thanks to Bobcat, Noni and Chris, Tina and Peter and Rose all super commuters. They came to infuse yellow into saline drip. Giggle, laugh, talk, read me out of my Diloted drowse. Shamim and Hanan for daily calls. Doc Raina for daily mantras, daily prayers and daily SMSs. Sindi for the inspiration. Namrata for keeping the sisterhood aflame. Deepa for words to float by.
Many Yellow souls unfolded before my bleary eyes.
And thank you Yellow Diarists. Know that your love and support hit the mark.
Time for a nap.
That’s just how it’s gonna be for a while.
I write this entry with much sadness at the recent loss of my good friend WA2BEN Ben Lipton who recently passed on. Ben was a great friend whom I spoke with for many years on ham radio and is sorely missed! I always loved his great sense of humor, especially the funny things he would say on the air when bickering back and forth with WZ4I Mark. They had the type of relationship where they would continuously put each other down, all in fun of course! If Ben and Mark were nice to each other on the air I would have thought that something was definitely amiss! I got many good chuckles out of the things those two would say to each other! May God bless and keep Ben by his side through all eternity! Heaven is a better place with the presence of Ben Lipton!
My original Fresno Oncologist is leaving the St. Agnes Cancer Center, so I have chosen to stay with the group. I love the staff there – everyone is so nice and professional. I chose a new doctor – Dr. Hackett. He has experience with Multiple Myeloma – a real plus. I meet with Dr. Hackett on Monday, Jan 11, then we drive to San Francisco to See Dr. Wolf on Tuesday.
George and I have learned a lot since May! We are much more active about my care. I have learned that I need to keep copies of all documents and tests. I carry everything in a binder and sometimes my copy of things is the one readily available. I’ve also learned to get all the doctor’s e-mails so we can keep everybody in the loop. When I was in UCSF Med Center for the weekend, I started taking Dexamethazone 16 mg per day. My Fresno Doctors noticed that was a large amount to still be on and I needed to cut the dose back. So there was a plan for getting on the drug, but not one for getting off of it! You should see my face, it is so puffy from the steroid!
So please think of us as we drive to San Francisco next week. George is a trooper about driving me there – I’m glad he likes San Francisco because we’re spending a lot of time there!
George did a really good job of explaining the whole radiation program. I met with the Fresno Radiologist the next day after we returned home. I had 12 sessions aimed at my tail bone. I went in on Christmas Eve and New Year’s Eve. Everyone at the St. Agnes Cancer Center was so nice – I really felt cared for. It was also neat to network with the other women patients. Most of the patients had breast cancer, I was the only one I met with Multiple Myeloma. Yesterday, Thursday, Jan 7 was my final day. What I didn’t realize about radiation is how much it takes out of me. I have NO strength! I cannot step up a curb unassisted. I cannot step my leg into the passenger seat of a car. I can’t see or feel the connection between radiation and strength loss, but it is clearly there. The radiation folks say it will take 6-8 weeks to regain my strength. I am starting back teaching full time in two weeks! Yikes! Calling all prayer warriors!
The most important miracle in my new life, my marriage with Ivonne, I’ve talked about. The second miracle, the medical miracle I discovered that may yet save my life, I have talked about. What I haven’t talked about is the terrifying, confusing, hostile, dangerous process of bringing her to live with me in America. I have written a substantial post on the subject, or at least a crackling-good
The New Year holiday has never meant much to me. I don’t think I’ve been invited to a cocktail party in thirty years. I don’t make resolutions. I do like to watch an exciting, close football game but if the score isn’t close I regret wasting my time. I have no favorites except Yale.
This year is different. My bizarre brain, which generally does whatever it wants to do, is obsessing on redefining