Monthly Archives: January 2015
I usually avoid sentimentality but I am compelled to reflect today on the previous year. I have hit a huge milestone. 2 years bone marrow transplant anniversary is January 15. I checked into the hospital January 8, 2013 to have what was left of my own blood cells decimated and replaced with cells from a stranger. I was told of all the risks and complications of this intense and highly complex process. Death or permanent disability from GVHD and infections were the concerns. But I was sick enough and at risk for relapse that the transplant was necessary as a life saving and extending procedure. And just as a summary I had 3 full days of twice daily total body radiation where I was a passive participant as my body was moved from the hospital bed to a wheel chair and I was taken to some dark hole of the hospital where a physicist and radiologist along with multiple technicians propped me into place while a mild nuclear reaction was directed towards me for two hours. The next two days was almost continuous high dose chemotherapy liquids dripped into my central line. Due to the fatigue from the radiation I do not remember much other than the feeling of being absolutely wasted and mostly unresponsive. Day 6 was a day of rest while they waited for my neutrophils to drop and for my body to hit its nadir. Day 7 in an anticlimactic middle of the night transfusion I got new cells gifted to me from a 28 year old male and flown all the way from Germany.
As I approach this 2 year rebirth day I have been feeling very well. I have had more than my share of colds and I have the joint aches and pains that have become and will always be a part of me but I am working and taking my kids to activities and I exercise at least 4 days a week and I’m meeting goals that I never thought would be possible for me. I’ve increased the intensity of my workouts and I’m challenging my body with diet to be the best it can be. I might be somewhat overcompensating but my body betrayed me and now I am attempting to dominate. My time of being a disengaged and almost impassive patient is behind me.
We all got some kind of bad cold a couple months ago. Amira and I both tested negative for influenza via nasopharyngeal (aka brain) swab but it was a flu like cold in both intensity and duration. Everyone else is fine but I ended up back at the hospital with secondary infections including bronchitis and conjunctivitis. Since I have had life threatening C diff. Infections antibiotics are not given to me unless necessary. The new nurse practitioner got me started on eye drops, codeine cough medicine and enough antibiotics to cure the plague. Being the new NP she did not know that this particular antibiotics tears up my digestive system. And I forgot since it has been awhile. My tendency to forget ever being sick when I am well is mostly a good thing except in these cases.
So I spent 2 days feeling nauseous and puking before I remembered that I should prob not take that drug and I called for a different Rx. But I am thankful for those 2 days of being not well for a couple reasons. The constant, unrelenting feeling of nausea was a familiar feeling. I remember how I had nearly constant nausea for most of my treatment so for probably a year and a half? Of straight nausea. That could really mess with a person. I also became more confident in my body’s ability to heal. To be sick and then get better without the fear of all the horrid things that can happen to a body with compromised immunity. This time I was just sick enough to appreciate my wellness. And it was a reminder of how your life can change in just a moment. A couple words said to me by Dr. Lilly. Breast cancer. Leukemia. I had no idea at the time of the weight that these words held. I remember telling Jeffrey as we lay in bed in the dark that the doctor said its Leukemia but we don’t know and he could be wrong. I literally shrugged it off knowing that I would be fine. But we were both right. It was leukemia but I am doing fine.
Here is me being beastmode at the gym.
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