I swear my body hates me.
You guys honestly don’t know how good you have it with your health until you lose it.
Now I just long for those days when it didn’t hurt to sit, walk, pick up the kids, or sleep. My legs no longer want to hold up my body. They’ve gotten weaker with each passing day.
And I look pretty rough too. My face, arms, hands, neck, and buffalo hump (the hump on the back of my neck) remains swollen and I feel as though it’s getting worse though Klay assures me I’m not.
My stomach is bloated, swollen, and hard. I’m super constipated. Nothing seems to work and the prednisone just makes me want to eat all the time so I’m in a lose-lose situation. I honestly look like a beached whale—and I feel like one too.
And because of my massive protruding belly, I’m uncomfortable all the time. It makes it difficult for me to breathe. I get out of breath just by doing ordinary things—moving things around, adjusting the pillows on the bed, making myself some lunch.
I’m also having difficulty swallowing—which Klay isn’t too happy about (haha I kid, I kid). But really sometimes it’s hard to get my food to go down. Apparently, I probably have thrush—like babies get—except you can’t see mine, it’s in my throat. I’m supposed to do this mouthwash rinse and swallow thing and I haven’t. I don’t imagine it will taste very good; I suppose that’s why I haven’t done it.
I look and feel so miserable I don’t want to be out in public. I don’t want to leave the house. I can feel myself withdrawing socially and trying to ignore how this disease is taking over my life. I just hate people seeing me like this. I hate seeing myself like this. I hate my kids having to see me like this.
I know things could be worse—a lot worse. I know I need to be thankful for the time I’ve been given and the second chance I have to live a happy, meaningful life. But I hate living this way. I hate the pain that this disease has caused me. I hate all it’s taken away from me and my family. I hate seeing my family’s lives put on hold because my body is so fucked up.
Why? Why do things have to be so hard? Why can’t I just move on? Why won’t my body just let me rest? Why?
I’ll never understand it. I just won’t. I try to make sense of it all. I try to make it into something positive by saying “maybe I’ll help some people” while sharing my story. And maybe I have. But that still doesn’t make me understand this.
What else do I have to go through?
What curve ball will I get thrown next?
Is the cancer going to return?
I’m in so much pain and uncomfortable all of the time, I’m just ready to feel better.
So it’s going to happen—I’m going to have photopheresis—a graft versus host disease treatment for the coming months.
 

During photopheresis, some of your blood is taken from your vein and separated into its different components: white blood cells, red blood cells, and platelets. Your white blood cells are treated with a medication called methoxsalen, exposed to ultraviolet (UV) light, and then returned to you, along with your other blood cells. These treated cells stimulate your immune system to help your body fight GVHD and CTCL.”

This week, I’ll have a trifusion or a central venous catheter (CVC) put in my chest… again.
The trifusion is not a medi-port; it’s has three tubes that stick outside of my chest and will stay outside of my chest until they want to remove it (or I start getting better).
I need a trifusion in order to do the photopheresis treatment for my GVHD of the muscles. Of course, the realist inside of me knew it would probably come to this—that just upping my prednisone—steroids—and taking Prograf (an immunosuppressant) wouldn’t do the trick.
So this Thursday I will have the trifusion put in and hopefully start photopheresis that same day. Honestly, I tried to make my appointment for the trifusion placement as soon as possible. I just can’t continue feeling like this every single day. The sooner I can get this treatment started, the better.
I don’t think I’ll see dramatic results right away; it does take time, I’m told.
Time, of course, it would come down to you.
You were the one thing I wasn’t sure I’d have any more of.
The SOB that would make the days drag on through all of my hospital stays.
And, now you’re the thing that I’m hoping will heal me and I have to wait… again..in hopes, I will see results from this treatment.
I just want my body to catch a break. I think it’s about time for that. Don’t you?
So exactly what is GVHD?
According to the Leukemia & Lymphoma Society:
 
“Graft vs Host Disease is a high-risk side effect for allogeneic (using a donor or another person’s cells) stem cell transplant patients. 
 
GVHD develops when the donor’s immune cells mistakenly attack the patient’s normal cells. GVHD can be mild, moderate or severe — even life threatening. Its symptoms can include:
  • Rashes, which include burning and redness, that erupt on the palms or soles and may spread to the trunk and eventually to the entire body
  • Blistering, causing the exposed skin surface to flake off in severe cases
  • Nausea, vomiting, abdominal cramps, diarrhea and loss of appetite, which can indicate that the gastrointestinal (digestive) tract is affected
  • Jaundice, or a yellowing of the skin, which can indicate that your liver is damaged
  • Excessive dryness of the mouth and throat, leading to ulcers
  • Dryness of the lungs, vagina and other surfaces

GVHD can be acute (within the first 3 months post-transplant) or chronic (long-term). Its severity depends on the differences in tissue type between patient and donor.”

As I wrote about above and also in this post here, my body is very sensitive to touch as applying any pressure to it causes me pain. I’m having trouble getting around the house, sleeping, getting up from a sitting position, putting on clothes or lotion, or anything for that matter.

I’m just ready to get the process started and crossing my fingers for no side effects!

I plan to document the whole thing this week, so stay tuned and pray for me.

Ready for relief, 

14 Comments

  1. I understand where you are coming from. Its like being in a tunnel and you are not sure where it ends. I am 18 post transplant and I am coming across issues after having almost none at transplant. Its very frustrating explaining how I feel to the drs. I hope your situation clears up soon and you get some relief.

    • Ugh, I’m sorry love. I know what you mean. It’s very difficult to explain the amount of pain I’m having. I’m so concerned with how painful it all is and if I will get any relief in the future. I hope you are doing better than me right now!

  2. Praying hard for you Cass! I hope this treatment gives you relief… I hate that you’re going through all of this.

    As always, you know I’m here if you need to get your mind off of it, or if you need an overnight stay. Never feel bad for reaching out, that’s what I’m here for. Love and hugs!

    • Thanks hun! I appreciate that so much. You know I do. I’m staying overnight tonight =( but hopefully we will have some answers soon on what’s going on.

  3. Cassidy: First I want to thank you for writing your blog. I myself had AML I’ve been in remission since May 2013. I am always waiting for those dreadful words…..it’s back. I can’t tell you how much I can relate to your posts. I was fortunate enough to not a transplant…..although it’s always in the back of my mind. I have been searching for someone who shares my thoughts and feelings on AML. I’m pretty sure your that person. I kept reading thinking “OMG this is spot on….these are my thoughts”. I hope to keep in touch and I am praying that the treatment for GVHD is a success. I had several friends with GVHD and I know what kind of pain they endured! Keep the faith and prayers will be going up for you!! May God bless you!

    Carrie Witthoft

    • Carrie! I’m so glad you found me. It’s nice to know that there are people out there experiencing and feeling these emotions. It’s so hard sometimes and others just can’t relate because they haven’t been there, ya know? Please feel free to reach out to me any time you need to talk. I’m here! Thank you for your prayers. And the GVHD may not be as bad as we thought, because we just found out that I have blockages in my SVC vein, so they were unable to put a trifusion in yesterday. It’s on my latest blog post!

  4. Veeka Kurinets Reply

    My goodness, how I relate. Im 6 years out, fighting chronic GVHD of eyes and lungs. It is nice to find people who understand firsthand what Ive gone through. Cancer is so lonely and isolating and life after bone marrow transplant can be rough.

    • I know exactly what you mean. I never knew how difficult it would be and I think that’s been the most surprising thing of this journey so far!

  5. Shawnee petersen Reply

    Thank god for Pinterest and random boredom I found your blog – amen to you for putting the words out there, aml gvh bmt bla bla it sucks – all of it , but we are lucky , they say, I am lucky , all of us are lucky but what in the Sam hell is the reasoning and Vague world of gvh fair or even close to a fair trade in the end ??? All that led up to gvh , you would think a gold metal and parade would be more deserving ??? Anyways , kudos to a fellow fighter of finding normal after the storm … much love and respect ! Iowa – AML/BMT/gvhd 4years strong …

    • Yay Shawnee! I’m glad you found me on Pinterest. I don’t really see much action on there, but I should post my blogs on pinterest because if you found this I’m sure others are looking as well. Glad to hear you’re still going strong 4 years later! Keep on kicking ass!

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