So my brother had a great idea to inform you of what to expect if you end up in my situation.
First of this is a stressful situation, and not just for the person going through this, but also your family and friends. So I'll tell you what I've experienced but also give some suggestions on how to make a negative situation positive.
So I got diagnosed in may of 2007 and because my leukemia was diagnosed so early I wound up being on chemo meds for about 4 years. I was very embarrassed to tell people about this condition except my family and close friends. I really didn't want people seeing me in a different light, that being a cancer patient. And that is really up to you. I wouldn't go into a job interview and spill your guts, but it's not a bad idea to tell your boss because there's a chance you will need a bone marrow transplant at some point and that's when the cats out of the bag. And I'll tell you, you'll realize how many people want to be there for you. It's a very humbling experience. But let's skip ahead to when I first got admitted for my induction chemo. The point of this is to kill all the cancer cells in your body. It's a stressful time, but one thing I would recommend is using this time to (1) asking a lot of questions. This is your body and you should what is going in as well as all the changes you're experiencing, I.e loss of appetite, having a chest catheter being pumped with chemo, fluids and antibiotics. The second thing I would recommend is doing things you might not already do such as read, learn a language, blog about your experience so everyone close to you knows what is going on and setting goals for yourself. The one goal I would avoid is the time you'll spend in the hospital. If you make timing goals, I can pretty much guarantee that you'll be disappointed. The third thing I would recommend is stay as active as you can. The better shape you're in, the quicker your recovery.
Now let's discuss being admitted and going through the bone marrow transplant. This really is stressful, so when you get your psych evaluation and they recommend you going on anti depressants, do it! This will be the toughest thing you'll ever go through, so if you can do it on an even keel, all the better. So I had an allogenous transplant which means the cells came from someone else, in m case my brother. You'll be asked at some point, well before being admitted to search for a match, starting with family members, but you can been get your cells from a babies umbilical chord, so don't fret if it doesn't come from a family member. And don't be nervous to get a second opinion. Like I said this is your body and who cares if you offend anyone. They're not living your life.
So for my second stay, I had to get 2 days of chemo and 4 days of radiation before getting the transplant. Some of the side affects are the worst mouth sores you'll ever experience, vomiting, and diarrhea. You'll also experience major fatigue, but try and push through and at least walk. Otherwise you'll end up with muscle atrophy, which means you'll probably end up in PT afterwards which is not where you want to be. So staying healthy and active before and after this experience is VERY important. It will make all the difference.
When you get the chemo and radiation you might not feel the affects right away, but you will. And the bone marrow transplant is nothing like it sounds. what happens is the chemo and radiation kills your bone marrow as well as your immune system. The transplant is just a one time, maybe two times of getting stem cells which will become your new immune system because your first immune system obviously couldn't prevent the cancer. The whole transplant process isn't bad, you'll probably pass out while it's happening. It looks like you're getting a bag of blood over a 2 HR process. The next day or even a few days later is when you'll start to experience the side effects I mentioned. For the cold sores, be sure you're constantly swishing sodium bicarbonate aka water and baking soda to help keep the sores to a minimum. And they will heal as your counts get better. What I mean by counts is that your neutrophils (baby white blood cells) as well as your adult white blood cells will go down to zero so that the stem cells can start binding to your body. This is when fatigue will really set in. So don't be scared to ask for help. You'd be foolish not to. Diarrhea will set in so this is not the time to be self conscious. Get it out. Drink lots of fluids and try to move around if you can. And don't be scared to take pain meds. You won't get addicted and they really do help you as you go through this process. And if you don't think something is right, tell your doctor. In my case I kept getting these horrible headaches and it turned to be CNS in the brain which is not as bad as it sounds. If you do end up with CNS you'll have to get some lumbar punctures (spinal taps) where they'll push some chemo into your brain a couple of times. Hopefully, this won't happen, but just in case be persistent with your doc about getting an MRI. If your claustrophobic, take lots of drugs before going into the machine.
This is about as much as I can tell you at the moment, except, take advantage of all your resources, such psychology visits, transplant survivor visits, etc...
I hope this helps. And always feel free to use me as a resource. This is a scary time and every experience us different. But I you have just a bit of knowledge as to what to expect before going in, it will make a world of difference. You won't be the same when you get out the other side. You'll be better.
This is really great!
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