I remember when looking at my PET/CT scan, where you are injected with radiation and any cancer in your body is sort of 'lit up' in the image. My insides looked like a Christmas Tree. (Can I say that?) Anyway, I went through six chemo treatments every three weeks and ended those with being in complete remission.
A treatment that's considered with these types of Cancer, mine being a bit rarer and more aggressive form, is where you are blasted a final time with a high-dose chemotherapy drug, that aims to kill every cancer cell that may want to hide somewhere in your body. It's such a high dose that one preparation for this treatment is collection of your own peripheral stem cells which are frozen and returned to your body at a later date. That later date is after the high-dose chemo that not only kills every cancer cell...it kills your bone marrow as well. With no bone marrow we have no immune system and our blood loses the ability to produce blood cells and platelets which cause the blood to clot, should it need to.
Because of that little fact, naturally, you are in the hospital for about three weeks. The first three days are boring, so they tell me and those middle 10 days are the days you can expect to feel your worst. Dead tired, development of painful mouth sores, (my least favorite) blood transfusions and of course they keep a close eye on you since you are prone to catch anything that may want to invade your body. Back to this in a bit...
However, going back to my complete remission, after my first treatments. In preparation for the high-dose chemo and the collection of my stem cells and other tests I was taking to prepare...I had these killer headaches, for that week or so that wouldn't quit. relaying this to the Stem Cell Specialist, he at first suspected a sinus infection and gave me an appropriate antibiotic and told me to let him know how I was in a few days. In a few days, I emailed my Stem Cell Coordinator who was the was the man with the plan for what I needed to do and told him there was no change. He relayed my email to the Specialist who, in turn, relayed it to my original Oncologist. My Oncologist promptly called me and asked that I come into Mass General, where all this has been going on to have a brain MRI. I was driven in by my Brother who took me home following the MRI. I wasn't home twenty minutes, when my Oncologist called me and told me to 'Come back in.' I'd have to be admitted. Seems, he told me, this insidious cancer had infiltrated my brain fluid and when I went back to the hospital, getting another MRI for my spine...that to showed the cancer was also in my spinal fluid.
So now...new plan. I would do chemo treatments of Methotrexate A drug designed to blow this cancer out of the fluid around my brain. For the spine, each hospitalization included a 'Lumbar Puncture' which was a procedure, whereby they stick a large thin needle into your spine and take out 5 centimeters of spinal fluid and put in the same amount of chemo. As you can guess, the needle never found its mark the first time. This ranked just below mouth sores for me. Anyway, that was one week in the hospital and one week out for six rounds. Now that's done and again, I'm clean and again - I'm back on track for my high-dose chemo treatment/stem cell transplant. And, today in a little over two hours is when it all starts. Three weeks of knowing what to expect with a fine knowledge transfer from the stem cell team but, still filled with uncertainty.
If there's one thing the online world and Social Media has taught me - If you're going through something...a zillion other people have already gone through it and there are a zillion more yet to have the same experience.
With that, I thought I'd 'Tweet' my three week stay for my chemo/stem cell transplant to anyone who might be interested and for those who may find themselves in the same boat but, not there yet. I'll accompany the tweets with the hash tags: #StemCell and #Lymphoma.
