It’s a long hard road, but I’m gonna get there.

This post was written and posted by Alabama Pink, now an alumna of Mothers With Cancer.

Before I begin: I’m thirty-three, smug married, and wrangler to a wacky two-and-a-half-year-old. In April of this year, I was diagnosed with acute myelogenous leukemia. Based on the sub-type of AML that I have (The Mean and Nasty Kind), the White Coat Folks have recommended a bone marrow transplant as part of my treatment. The entirety of this post resides at Whoa, Camel.

At the beginning of this month, my family and I had a meeting with the VCU bone marrow transplant team , and since then I’ve gotten about 20 pounds of literature about the whole process, from soup to nuts. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I’ve gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it’s the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it’s return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. BMT is not a cure for AML; I’ve got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them’s the facts, and I’ve got to put on my big girl panties and take my medicine.

The best metaphor I could think of for a bone marrow transplant is from Ender’s Game. It’s like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.

See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I’ll probably end up looking like Miss Hiroshima 1945.

Once the site has been thoroughly nuked from orbit, just to be safe, I’ll get my transplant. It’ll go down a lot like a regular blood transfusion. From there it’s a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I’m at risk for rejection. My new immune system will more than likely attack it’s new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks. From what I’ve read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.

This stint in the hospital will take a month at least, if I don’t develop serious complications from the transplant that would necessitate a longer stay. I’ll be able to have visitors, just no sick ones. I’ll be completely confined to my room. In other words, the best four weeks of my life.

Once I’m deemed okay enough to go home, I’ll need a full-time caregiver. For the first few months, I’ll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no “dirty” chores, no contact with the cats, no cooking that involves raw foods. I’ll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I’ve got to mask up.

This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I’ll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I’ll need to get all of my baby vaccines again.

For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won’t get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)

This is the giant white wall that has been thrown down into my path. I can’t see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.

At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.

But I’m gonna get there. I’m heading for the morning sun.

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10 Responses to It’s a long hard road, but I’m gonna get there.

  1. kelly says:

    I also have AML and am about four months post-transplant (allogeneic, my brother was the donor). I know everybody’s course will be different, but I wanted to let you know that it might not be as bad as you think. I’ve managed to avoid any super duper complications and I’m actually living a pretty “normal”/unrestricted life at this point (not working, though). Right now we are waiting for the results of my first BM biopsy since the transplant. I had a trisomy 8 genetic mutation that makes my AML higher risk than some other scenarios. Do you also have a genetic change? I had the transplant at the University of MD, but we live in Alexandria, VA. I know VCU has a well-known program. Its a scary time – if you ever want more information about my experience, let me know. Kelly

  2. alabamapink says:

    Ah, someone who speaks my language! Kelly, I’d love to hear more about your experiences; it’d certainly help take the edge off of my anxieties. My profile on my personal blog should have my e-mail addy. Thanks for the encouragement.

    I will be having an allogeneic, unrelated donor transplant (I’m an only child.) and yes, I’ve got a genetic change: monosomy 7.

    So far, VCU has done me no wrong, and I’ve heard nothing but positive stuff from past donors, including my aunt. I’m glad to be living so close to a good program.

  3. Oh my goodness! You have sure got a lot to go through. You seem so strong and so matter of fact about it, so I gather you have accepted what’s coming up for you. I just want you to know that you will be in my prayers from now on and I will hope and pray that this goes as well as it possibly can for you. I hope you are one of those patients who have absolutely nothing go wrong at all, that you recover so quickly the doctors are stunned and that through it all you have a sense of peace and confidence. Thank you for sharing your amazing story, take good care of yourself, big hugs to you from Jen B xxxxx

  4. Wow, that is some program!! Good luck!!

    It is sure hard to be a mom and stay away from germs!! (one of the hardest things I’ve ever done is to tell my sweet, sick child that I could not cuddle, because I did not want to get sick too)

    On a much more mundane note: my first thought was: you’ll have lots of time to watch movies!!

    If you are a sci-fi fan (Ender’s Game referance), I would recommend also watching some of the more serious series (like B5, Battlestar Galactic, etc) If I’m on the right track, email me and I’ll recommend more.

    Btw, B5 is basically an awesome novel in film. It is really fantastic, but you have to watch every episode, from the beginning. It’s seriously like a novel (the first 6 chapters are a little slow, but if you don’t watch them, you won’t understand anything) — and, after you’ve seen the entire 5 years of series, you will want to watch it again!

  5. imstell says:

    It is a long, hard road. We stood by helpless while two (yes, TWO) sets of our friends traveled it with their toddlers. One for Neuroblastoma and the other for ALL.

    The good news is that 5 and 4 years later respectively, both boys are cancer-free and doing awesome. Although one of the boys now has a female blood type because his doner was a female. Interesting.

    When do you start?

  6. Julia says:

    Oh my gosh what an amazing site and what an amazing story you share, not just a story but your real life experience. I encourage you to keep writing your thoughts down and share your stories as they not only make you feel a little better but you are blessing others as they read what you are going through.

    I have just helped set up this http://www.theencouragementfoundation.com.au in Australia and was actually searching on scrapbooking (oh which I own a shop) and came across this site.

    Please if you ever feel up to it I would love to share your story or others stories on our encouragement site or blog so that others will be encouraged by you.

    Bless you heaps and have a fantastic day.

    Julia
    http://www.theencouragementfoundation.com.au

  7. imstell says:

    Julia – I gave your website a very quick run through. After reading your Guiding Principles, etc. I so want to know more. What an amazing site! Truly an inspiration. Are you one of the “contact us” contacts?

    Stella

  8. whymommy says:

    Welcome to the group, Manda! This is an amazing post, and it just makes me want to know more….

  9. kelly says:

    Amanda, for some reason I wasn’t able to get to your email from your site. I clicked – nothing happened! I wish I was more tech savvy, but how about this: you can contact me by phone or email anytime if you have questions or want to talk. My phone # is (703) 549-3703, email is kmillersw@yahoo.com. I hope sharing this doesn’t violate any blog laws! I read that you already have some matches through the registry – sounds like good news.

    Last Tuesday I had my first BM (appropriate, don’t you think?) biopsy since the transplant. The preliminary news is good: no sign of leukemia! They are also doing the genetic testing to look for any remaining trisomy 8. I think that news will be pretty important, so I’m trying not to focus on THAT too much. Hope life is good today. Kelly

  10. justenjoyhim says:

    You do have a great deal to go through. Just remember that we’re here rooting you on through it all.

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