Two year post transplant
Today is the 2 year anniversary of the day I checked into the hospital for my bone marrow transplant. Two years post transplant is a significant milestone. At 2 years you are considered to be “out of the woods” to quote my doctor. They do not dare to use the word cure until 5 years but generally if something bad is going to happen it will happen in the first two years after transplant. I seem to be a “bad weather” blogger. I only post when something bad is happening. But I have been feeling really great the last few months and I wanted to share that with all my followers who have supported me over the years.
Since I am at 2 years now I am doing some house cleaning. I’m finally admitting to myself that I am a medical supplies hoarder. Do I need 5 bottles of Biotine and 4 bottles of chlorhexine gluconate aka hospital body wash? No, no I don’t. I have piles of Tegaderm, over 70 saline syringes and a minimum 300 sterile alcohol prep pads for my central line that has been out of my body for a year and a half. And the masks, so many masks. But, I will start by getting rid of the pills I no longer need.
The pills show my trajectory through treatment. I have midodrine and metropolol for tachycardia and orthostatic hypotension caused by Vancomycin. Methotrexate chemo pill. Creon for pancreatitis caused by the daunorubicin. Prednisone for all the things. Budesonide for when I told the hospital that I would not consent to taking even one more prednisone. Citalopram for panic attacks that started after my central line leaked chemo onto my chest causing nurses and doctors to get that rare deer in the headlights look. Compazine, zofran and Marinol for nausea. Sumatriptan for the 2 week headache I got from a spinal fluid leak following a dose of intrathecal chemo when the polite doctor told me that not one of the 80 anesthesiologists at the hospital would touch me. Vancomycin for c diff. A variety of antibiotics: moxiflaxocin, augmentin, fluconozole, metronidizole and valcycolvir. Tacrolimus for suppressing my immune system while the transplant took. Pepcid, nexium and furosemide to try to control the side effects of side effects. Tramodol and ambien for sleep and enough OxyContin to kill a horse. I am ready to give all these meds back to the pharmacy for proper disposal.
I also finally have a plan for the full tote box of scarves, hats and wigs in my basement. I have been going to a young survivors support group through Jamescare For Life and one of the girls told me about a organization called Hope Scarves. They take donations of scarves from cancer patients that have finished treatment and they have them cleaned then send them to patients just starting treatment along with the story provided from the donor. My wigs will be shipped to Wig Exchange. They accept high quality gently used wigs to pass on to someone who needs. I am able to include my story with these as well. We share our age, date and type of diagnosis and answer 3 questions.
What gave you hope? What was the hardest part? And Words of encouragement to share?
I hope I can be an encouragement to the women who get my scarves. I no longer need them.
Look at all that hair!
Never underestimate the importance of a good eyebrow.
Pink silk scarf
The whole bundle