Well, it’s not officially until the 22nd, but I had my 2 year post transplant long term follow up this week.
Most important, the cancer–NO recurrent disease. So, everything else here is just gravy. A clear CT is what I hoped for. That, and passing the structures portion of the architectural licensing exams, which I took the day before my CT….why not just get all the stress over at once? The day when I would receive a “pass” letter and a clear CT seemed too good to be true. Both of those days came.
GVHD/sclerosis: My arms have been all messed up for about 15 months. My wrist flexibility is limited, the skin on my forearms is super tight, the skin on the bottom of my arms is all weird and wrinkled, and I have tightness in my pecks (ie I can’t make a T on the ground with my arms out flat). The steroids and methotrexate I’ve been on for over a year haven’t seemed to help this much. I’ve been a in clinical trial getting Rituxan once a week for a month every few months. Had it in January. They want to continue but I have some low counts in my white blood cells that need to come up before we can continue. Rituxan has helped people with this condition.
If this doesn’t work, they have a drug which was the other choice in the clinical trial. The last resort is some sort of photo-peresis treatment where they take out your blood, treat it with UV or light and then send it back in. It helps 50% of people who haven’t had success with other things. BUT, they recommend getting a catheter for this, which brings up such a sense of dread for me. The condition of the sclerosis DOES NOT negatively impact my regular, daily life, but having a catheter definitely will. There is just the fear that it will progress and I’ll have permanent loss of mobility or that the inside of my organs could end up looking like the skin on my arms. I’ve heard of people who get dialysis having to use the veins on their feet when the others go bad, I’ll do this before I’ll get a catheter again (BTW my veins are fine, and I got 6 hour chemo about 10 times when I was first diagnosed with no port or catheter).
So, let’s hope the Rituxan or the other trial drug can give the doctors the results they want. I have labs again next Wednesday to see if my Neutrophil count is back up. I also have a PT session to make sure I’m doing all the right stretches and things.
In terms of overall physical well being, I’ve joined the cult of Crossfit and I love it! I have to modify everything and I am totally remedial, but it’s been so good for me. It’s like PE for grownups, basics like pushups, situps, lifting, kettlebells … lots of heart-pumping strength training. I need the discipline of a class and someone making me do something, and they push me more than I could ever push myself. I am just so far behind where I was in my previous life (BC) that I have to check my pride at the door, and balance keeping a trainer that’s unfamiliar with my huge rap sheet abreast of my limitations with my wrists and lungs (still have some damage from the GVHD last year) and the reason I’m so weak–not because I was just hanging out on the couch–but not wanting to be cancer girl all the time. But, I am getting stronger and even after a month and a half can totally feel the difference in my body.
Last year around this time I was 20 pounds lighter and could not even lift up my carry on suitcase into the overhead bin. This will definitely not be the case the next time I fly! (BTW I’ll be in TX May 15-22nd. I’ll put something on Facebook, I’d like to do another afternoon get together around the pool, probably on the 16th).
Eyes: they are under control. A little irritated with allergies, but steady. I hope that someday I will not have to do eyedrops 8x a day, but can’t really complain considering how bad it was at one point.
Lungs: they didn’t schedule a Pulmonary Function Test as part of my follow up, so I’ll have it next week. The CT showed residual nodules from the pleural effusions, clot, fluid, GVHD, etc from last year. They only really bother me when I walk up a big, steep hill or try to run. Running used to come so easy to me, even when I hadn’t run for awhile I could pick back up with 3 miles, so it’s beyond frustrating to not even be able to run more than a few blocks. It’s just so hard with my lungs. I am slowly building but it’s not fun. One of our friends won the lottery for some coveted backpacking passes this summer, so my goal is to make it up to the Enchantments without passing out. This is a good, clear, and reachable goal.
Babies: So, this is the time when I start to wade into the intimidating world of surrogacy. I am terrified of how difficult and stressful the process will be, that something will go wrong with my health in the mean time, of getting my hopes up and being let down. I just feel so behind already, but of course we want me to be healthy, even though I’ll never be in the clear…I’ll always be worried about my next scan. I’m going to start slowly by doing some research, maybe meet with a lawyer. My old neighbor worked in a fertility/egg donation clinic and is helping me out with some resources. I just feel very alone in the whole endeavor, and frustrated that we will have to go through so much expense and effort for what is literally the most natural thing in the world for most people. [It gets old to keep adding this caveat, but I’m of course thankful that the option even exists and already beyond eternally grateful to our unknown future surrogate. I hope at this point everyone knows that I’m grateful for modern medicine and everyone who has participated in getting me to this point and who will get us to the point of having a family. I would NEVER want to sound ungrateful or entitled to anything]
This is of course all pretty personal stuff, and I share it here mostly for ease of disseminating the information. Many people may ask, can you carry yourself? Technically, maybe, but not now. In terms of natural conception, that ship has sailed. They know of no one over the age of 28 who had a tandem stem cell transplant who was able to conceive naturally. As for me carrying, I’m still on like 10 medications, my GVHD is no where near under control, and oh yeah, they don’t love for you to carry pregnancies when you’ve had a blood clot. And my body has already been through so much, who knows how it would react. It’s just not an option right now or maybe ever.
I’m sure there will be people who disagree with our decision to start a family. I totally understand if you do. But, we have one life. If I can help it, I’m not going to miss out on one of the most fundamental experiences of life. The technology is there for this to happen. I’m already only alive because of modern medicine, so any ideological disagreements you have with me at this point would mean that you don’t think I should be alive, and so….not much I can help you with there.
This point may be a bit morbid, but when in my situation you have to face your own mortality. I am married to a great man from a great family, and if my life ended early, I have no doubt our children would be well taken of, and that he will be able to find a wonderful new wife (who I would already be jealous of). If I was in a shaky marriage or had any doubts about my marriage, I would not do it. There are no guarantees for anyone, and most people reading this feel exactly how I did on February 2, 2010, or how my dad did on January 25, 2012: invincible. But no one knows what may happen the next time they get in car, stay home from work feeling like they have the flu or go to the doctor thinking they have a sinus infection.
OK, that was a total downer, so I want to end this on a happy note. NO recurrent lymphoma–yeah!! A few of these quotes have come up this week with everything going on, and this is the way I have to live my life:
“Worry does not empty tomorrow of its sorrow, it empties today of its strength”
“Don’t let the fear of tomorrow rob your joy today“