I was forewarned the first 100 days at home would be spent wondering if I’m human (my paraphrase). I have been sharing with others I feel half human when resting, which is 99.9% of the time. Once I am up and about, for example, taking a shower, my humanity goes to pot.
I’m surprised at how tired I get just taking a simple shower. Requires horizontal time on the couch to regain the little strength I have.
This feels so different than “normal” chemo. Chemo makes me tremble on the inside, shake, and feel really weak. The stem cell transplant has caused me to feel mostly just a near 100% lack of energy, absolute exhaustion. I just now picked up an extension cord and moved it near the TV so Janice can hook up Christmas tree lights. That required sitting down to catch my breath. Mystifies me how I have right at zero reserve. It makes sense logically, but going through the motions it is surprising to me how tired I really am.
I thought I would feel a bit better or stronger after one week at home, but not much has changed. I have virtually no appetite. I’m good with one moderate to small meal per day. I’ve lost 22 pounds now since all this mess started in June. Food just isn’t appealing or tasty right now. Odd thing to a guy like me who enjoys a good hearty meal 2-3 times a day.
Another change is my sleep and wake cycles. I keep having terrible dreams, almost all centered around going back to work with neonates or tied in with the theme of neonatology some how.
When I awake each morning or after my mandatory body shut-down nap during the day, two things happen. I have to shake off the bad dream, reminding myself it was another nightmare. I also have to lay for a moment and see if the brain pain is staying as a headache or if it will dissipate as mysteriously as it began. Most every nap and mornings since I’ve been home, I have nightmares when asleep and headaches as I awaken. Fortunately, almost all the brain pain dissipates in a few minutes. Once every couple of days I have to take a Fioricet to knock out the hurting brain.
We had to make an extra trip to Dallas to UT Southwestern bone marrow transplant clinic on Saturday. I woke up in a sweat and my dressing over the Tri-Fusion heart catheter was moist and peeling off. Evidently the dressing cannot stand up against a good sweat session during the night. Two hours of driving for a 15 minute dressing change. Had to be done.
Thanksgiving was real nice. Janice cooked up a nice turkey and dressing meal with green bean casserole and various yummy trimmings. As Janice said, she made it simple this year and stuck to the basics. Not many big appetites and things were kept at a low key this year for obvious reasons.
I had to stay away from the salad. Not easy to do. First off, I love vegetables. Second off, her salad is a major departure from any normal salad. It is divine delicious goodness in a glass bowl. She promised to make it for me in about 90 days when I can have fresh veggies and fruits. I’m really looking forward to that.
I continue to receive encouragement from many avenues. Thank you all for the kind cards and words of support. It all means so much to us and is really helpful.
I haven’t been on social media much since getting home. I’m tired and taking a break. I was living on Facebook when at the hospital. I’m grateful for what Facebook was able to do by way of keeping me in touch with so many when trapped in that room for 20 days. Time for a break though. I’m mostly just laying and resting, trying to do some mindless fun, something simple and distracting. Believe it or not, trying to relax and find something fun to do is a challenge for me right now. Life has become too serious and I want to break some of that off of me.
December should prove to be interesting. I will be terminated from my employment. My current employer is generous and holds my position for 6 months from the time my leave of absence began. Many employers do not, they only will hold a position for the FMLA required 12 weeks. I suppose it makes good business sense that they eventually have to hire a replacement. Hard to limp along with missing people permanently.
My termination will cause a few ripple effects that I don’t fully understand yet. Primarily this has to do with disability and insurance. Fortunately, Janice’s insurance through her company is really good (appears to be more benefit for less cost at first glance). I’ll be signing up for that tomorrow during open enrollment to put our family on her policy.
This also causes a change in life insurance. I currently have a generous life insurance policy. I can “port it over” to a stand alone policy so that it will continue. If something should happen to me, it is more than enough to cover all debts and medical junk, pay off everything including the house, and leave a nice little nest egg of cash. Only problem is that once it is transformed to a stand alone policy, it will be expensive to maintain on its own. I lose the support of my employer’s contribution. Thanks to the generosity of so many and good old fashioned horse sense cost cutting, we believe we will be able to transfer over our insurance, make all changes, and keep the basic status quo.
I’m still nervous about all the changes, but God has been good and not let us down. I trust it will all turn out as it should. I’ll try to keep doing weekly updates as there isn’t much change from day to day right now. I’m pooped and not in the video mode right now. Resting is my priority.
Robert, thanks for the blog. I too get nightmares about work — that’s just because I’m lazy. Keep up the good fight.