6 months since transplant.
11 months since diagnosis.
What. The. Eff.
God effing damn it.
Am I really still here? “Is this going to be for forever?”
I’ve been doing a lot of reflecting lately. I mean, other than reading, watching TV, and playing video games. I’ve had a hard time finding things to say. Or rather, how to say the things rattling around in my head.
But, I’ve never been one to shy away from a challenge, or to let my struggles defeat me. It may take some time, but, shit, I’ll get there.
I’m finding that the closer I get to potential freedom, the more I’ve had difficulties maintaining a positive attitude. I have been utterly incapable of motivating myself to work out and get back in shape.
Part of that, I think, can be blamed on the reduction of my budesonide (steroid). As its come down, not only do I feel less and less like Superman, I’ve been having more and more blah days. My stomach and bowels have generally been, at best, annoyed with me. And at worst…well. Let’s not get into that, shall we?
A few weeks ago, it got bad enough that I had to go to Sloan, and get IV fluids and IV magnesium. I forgot just how much it burns to get magnesium through a peripheral vein. The last (and only other) time I got it was when I was initially diagnosed. At that time, I had the IV placed in my forearm, and it only really burned right around the site of the IV. This time, the IV was placed in my hand, and my entire arm felt like it was on fire, while also having a pulled muscle in my forearm.
Like I said, unpleasant. I definitely missed my PICC line and the Hickman catheter at that point.
My friend Jess will understand – Setbacks fucking suck. Er…effing. Yeah.
But luckily all the tests came back negative, so the cause wasn’t a virus or anything, it was just more of my body being generally cranky and irritable. Understandably so.
Another part, I’m finding, is that my doctor isn’t sharing the whole story of things with me. I’ve had some conversations with a few people (Jessie, notably, though others as well), and it just seems to me like Dr. Barker doesn’t “get” me as a person or as a patient the same way that Dr. Roboz did.
There were times in Dr. Roboz’s office where she would explain something, and my parents would ask a question, and I would get exasperated. It would be something that I had tried to explain a few times, or something that I just didn’t want them to bring up, and every time, Dr. Roboz would look at me, and would patiently explain pretty much exactly what I said, giving it the added weight of an actual doctor with actual know-how. Several times, particularly during the process where I decided to get the transplant, my parents didn’t necessarily understand why I would go through such a risky procedure when things were already going so well with the chemo I was already getting.
She looked at me, looked at my parents, and said “Stop me if at any point I’m wrong, Anthony, but I think he feels like this <exactly how I felt, using simple language as well as doctor speak to illustrate both to me and to her, and to my parents, why I made the decision I made>”. Dr. Roboz is awesome, and she and her PA have both sent me numerous emails to check up on me. I’m not even going to Cornell at the moment, and she even came to visit me during my transplant. I pretty much almost cried. Long and short, it is the absolute most ridiculous set of circumstances that led me to her office, and I will be eternally grateful to her and her staff.
Dr. Barker, on the other hand, is starting to get on my nerves. Initially, I picked her because she was blunt, direct, to the point, but still managed to instill confidence, and display empathy and a connection with what I was going through. She’s the only doctor that point blank told me that the TRM (treatment related mortality) rates of a cord stem cell transplant are 25%. She’s the one that told me that over 50% of patients experience GVHD, and that 10% of that is fatal.
She was what I needed at the time. A reality check, while remaining an optimist.
But in my recovery, I’m finding that she seems to avoid telling me the whole reality of the situation. I find myself googling my questions, or asking med students, or oncology residents, or PAs for answers, when really, I should be asking my Doctor.
And honestly, it’s pissing me off. I think I have displayed a pretty enduring capacity to acknowledge the depth of potential dangers involved in my situation. I think I have wrestled with and ultimately grasped some difficult concepts. I’ve made some of the hardest decisions I’ve ever had to make in my whole life. If I wasn’t before, I sure as shit am now a god damn Adult(TM), and I wish my doc treated me as such.
Ultimately, while the blame rests squarely on my shoulders, I’m starting to realize why I’ve been in such a physical funk lately. Every other time in my life where I haven’t kept some kind of physical task list, or had some routine that was striving for a goal, I have ended up overweight, unhappy, and out of shape.
Not knowing when or if my solitude will come to an end eats at me, slowly but surely, until my motivation is gone.
So, this Wednesday, when I go in for my big 6 month exam, all that shit ends. I get my biopsy – if it comes back clean, well, fuck – that’ll be just under a year of being cancer free, and if you make it to 6 months with no signs of a relapse post transplant, it bodes extremely well for your long term prognosis.
I also get my immune function test done. While the results for the biopsy might take awhile to come back, the immune function results should be available by the time they finish my biopsy. And again, the results, most likely, will allow me to go back to work and move back to my apartment. Best case, I’ll also be allowed to socialize a bit more. Worst case, status quo remains.
But the biggest thing, is that I’m going to have a talk with Dr. Barker. I haven’t really planned out what I want to say, but mostly, that I’m hurt by her lack of trust or understanding in who I am as a person and as a patient. That her behavior is actively a part of making my recovery more difficult.
And while it’s probably too late to really do much good for me – I’m already passed the most difficult and trying parts of transplant recovery (except for the whole..chance of relapse, thing), maybe the next time she gets an intelligent young person in her office, she can treat them more like the adult they are, rather than the kid they might have been.
Also, I know that a number of mothers read this blog (including my own), so I just want to wish all of you a very happy Mother’s day, and I hope you all had wonderful days.
Eff Leukemia 
Dear Anthony – I hate the struggle you are enduring . It’s difficult to think about and watch. I do believe much of what you are experiencing is coming off the meds . They have invaded your body and had their way -now its time to leave so needless to say there has to be some withdrawal going on. It saddens me further to read how upset you are with Dr. Barker but knowing you / you’ll set her straight on your Wednesday visit. I’m sure if you have s list of questions she’ll take the time to answer them to your satisfaction, perhaps since the transplant has been success the handling of a patient isn’t the same, but Dam -it should be! Maybe you should let her know you blog to all your friends and family about your treatment and care! And we pay attention! I hope this nightmare ends soon for you and all your future test come back fast , negative and 100% good. Love you. Thinking of you Xxx Aunt Marge
I’m not so down as this post might have sounded. More just frustrated with how long its taking and annoyed with my lack of information.
This is just another day, and tomorrow will be brand new.
Nice to hear from you even if things aren’t going so well. Here’s my two cents: Several times I’ve felt like key dangers are dismissed or minimized or shoved under the rug by my parade of docs, and I’m 59. The good news is that they would do that no matter what your age! I’ve had several posts on my blog from others with leukemia that say they got the same treatment. I can only imagine that there’s a med school class on Doubletalk 101.
Your Aunt Marge is right. If you don’t want to throw your blog in her face, you could write out your opinion and email it to her or send it or just say it when you see her. You’re really good at expressing yourself on paper and writing it down might take some of the dread of confrontation.
As for the out of shape stuff…I hear ya! My meds fuel my appetite and caused me to gain 20 pounds since diagnosis (just “celebrated” one year) and I was already too heavy. Even as I write this, I’m still hungry after a moderately sized spaghetti dinner. Urgh. Geez, now I’m ranting.
Well, I’m sending you shiny, healing vibes for Wednesday (I liked your post on prayers btw). And no need to qualify your frustrations. Sometimes you just have to bitch.
Thanks for the Mother’s Day greeting. Happy belated Mother’s Day to your mom too.
Thanks for the kind words and encouragement.
As for the weight thing…I don’t even know anymore. I started this process at 175lbs, lean, and in shape. Now, I’ve somehow boomeranged right back down to 175lbs, but I feel tubby and bloated.
Just anxious to be able to start my life again.
And I’m not really too anxious about confronting my doctor, to be honest. I’ve never really had a problem expressing my opinion in either verbal or written form. The biggest problem I have is actually starting the conversation. Once I manage that, well, then the rest is easy.
Hang in there, Tony!!! And many thanks for the Mother’s Day wishes. Spent it up at Union visitingTyler. A good tiem was had by all.
I hope he’s doing well. The last time I saw Tyler, I think he was like 4’5″. Facebook assures me he is fully grown and seemingly pretty cool. All the best!
Tony,
I feel for you brother. We both know my feelings on set backs and I am just happy that you are able to write about your frustrations open and honestly because really, it’s all you can do for right now. I understand that you must be so incredibly frustrated, especially because things are kind of stagnant right now. You don’t need me to tell you that you will get back on that bike and socialize with your friends and live independently (but I will anyway hehe). But for now GET MAD because you owe it yourself to honor your feelings as they are valid and real.
As for your doctor…I don’t like this. As a patient (and a normal human being) I understand how critical it is to have a doctor that is open and honest yet reassuring and supportive. I have been blessed that my oncologist is especially good at maintaining that balance and I would probably be frustrated, hurt, and annoyed if she treated me anything less than a person. One of the most important qualities I need in my oncologists are to feel understood on a human level (second to knowing a shit ton about cancer haha). I encourage you to have that conversation with your doctor and let her know what YOU need as an individual. It may change her perspective and like you said help her work with other young adults in the future. Life is full of teachable moments, this is one of them.
Thinking of you always,
Jess
Thanks Jess. And you’re right – just have to feel what I’m going to feel and do my best to deal with it.
I think the most annoying part is that my doc is doing it with what she thinks are my best interests in mind. I just didn’t make myself clear enough that I’m not a kid, and that I want to know everything (even the bad stuff).
Anyway, best of luck with your purgatory, and I hope you get some good news soon.
T
So glad to hear from you. I often would visit your fb page to see if you had updated. I will be praying for you 🙂
Thanks for the prayers! I can see the light at the end of the tunnel 🙂
Tony,
I have been following your blog since I was diagnosed with AML in June. You and I have had many of the same experiences since last summer. I am 5 months post stem cell transplant and have experienced GVHD of the lower gut (I really think that I still have it) and am currently back in the hospital with CMV colitis. As you probably know, the treatment for each is the opposite from the treatment of the other. I also have lost most of my leg muscle and a lot of weight due to high dose prednisone therapy and am trying to turn that around with physical therapy and get back to lots of exercise to build up the old body.
There are two major differences between us – 49 years and gender. However, I believe that we are kindred spirits traveling a similar path. My blog is f-leukemia@blogspot.com. (coincidence)? I do think of you often and am sending positive energy your way.
Gloria
I meant to say that there is a 40 year age difference. I am sitting here with Magnesium running through my peripheral IV. Ow!
Gloria
Thinking of you and hoping everything went well! Also, for a laugh I think my donor may have been part chia pet my hair keeps growing, but straight up … no curl, just straight up … I’m thinking it may be time for a mohawk/rat tail combo and to see. About making R.A.D. II (the original is the best worst little known 80s BMX movie of all time). Just remember sometimes you have to be your own advocate and you are NOT ever a mere statistic or number … you are Tony and fricking R.A.D. (a little more rad if you’ve already seen R.A.D. of course haha). Big hugs from Seattle and cheering you on hoping this visit gave you some answers and some vindication!
Thanks Niki 🙂