“…Loses the vibe that separates
It’s good to let you in again
You’re not alone in how you’ve been
Everybody loses, we all got bruises
We all got bruises….”
5/19/2017: Michael set me up with his vague, worrisome sounding post a couple of weeks ago. He said it would force me to do an update to let everyone know I’m fine. Has it really been nearly six months since my last post, and a year since a comprehensive update? Procrastinate now, my constant mantra. Now that I’m 6-1/2 years post transplant, we no longer keep the detailed diary of traumas and treatments to periodically review and pass along to others.
Life is good. At the same time, we’re never completely free from worrying about recurrence, especially after being hit twice. Things that seemed so inconsequential pre-cancer can now send me into an anxiety spiral of epic proportions. I’m private and hide it well, business as usual, cheery smile, but Michael KNOWS because he’s there, too. I suspect this is fairly typical of cancer survivors and their mates.
Once I passed my 5 year checkup and bone marrow biopsy, I was happily released by my transplant team permanently (unless the unthinkable happens). My plastic surgeon released me in October after some additional work on my breast reduction in September. I’m all finished there. The rest of my medical visits remain fairly constant: bi-annual bone scan, annual gynaecology with mammogram and PAP, as well as semi-annual dermatology, dental, ophthalmology, and otolaryngology. I travel to Johns Hopkins weekly for 15 minutes of UVA1 phototherapy which mostly controls my skin GvHD.
I’m supposed to see my hematologist and get blood work only every six months but something always seems to send me running to him by the 4th or 5th month. He’s the one doctor I trust totally and rely on to keep me healthy and sane. In August it was fatigue and several months with slightly elevated white count. He did a flow cytometry on my blood and determined it was reactive rather than monoclonal, most likely a byproduct of my GvHD inflammation.
Then I saw him in December because I’d had three respiratory infections in four months, each lasting a couple of weeks or more. He checked my gamma globulins, and they were ok. I’ve noticed since that there just seem to be a lot of different bugs being passed around this year. I got sick again in early March but took antibiotics right away instead of waiting and got over it much more quickly.
I was fine until mid-April, when I started having severe, deep pains in my arms and especially in my legs, worse at night. I noticed I bled more with minor cuts and bruised easily. I was determined to wait until my regular checkup in June but then woke up one day with petechiae and bruising on my legs, as well as swollen veins, and immediately scheduled an appointment. This is what prompted Michael’s last post. I was much relieved that my blood work was good other than my usual slightly elevated white count and newly elevated potassium (rechecked and in normal range this week).
We suspect most everything is related to my mild GvHD. I had been walking a lot more and doing a daily trek up and down our ridiculously steep driveway. I had also been taking a lot of naproxen (Aleve). Things have improved since I quit walking the hill and reduced my Aleve intake. I still have the pains in my limbs but not as severe. In my old pre-cancer life, I wouldn’t have thought twice about any of these minor annoyances. What has changed is Michael’s and my level of innocence about what they could portend. Most of the time, we’re pretty sure I’m fine, just ordinary aches and pains that go with aging and sedentary living but then there’s that tiny seed of doubt. I’ve never been much of a worrier by nature and don’t want to be now. But does any cancer (or other life-threatening illness) survivor ever feel quite as safe again?
I went for my regular six month checkup with otolaryngology Tuesday. Last time, back in November, we had a scare due to an enlarged level V lymph node. Michael was more frightened than I over that incident but an ultrasound confirmed that all was ok. Again, this was probably GvHD related.
This time, after doing the through-the-nose scope, and poking and prodding my mouth and tongue, she said everything looked great and suggested I should plan a huge party when I have my 5-year exam this coming November. I casually mentioned that my left ear had a sore spot that I could feel just inside at the base if I used a Q-tip (of course that’s a no-no but I am careful and never go too deep). Because of the location, it was difficult to angle the ear scope to see it but she finally located a small ulcer. She said she wasn’t worried but, “given my history….” (ah, those dreaded words), she wanted it looked at by an otologist and managed to get me a same day appointment. He wasn’t certain but said he thought it might have been a small sebaceous cyst that I scraped. The skin is so thin in that part of the ear, that a tiny spot of bone was exposed. He cleaned up the area which caused it to become actively painful instead of just sore and applied some sort of liquid bandage. I’m to keep it dry and return in a few weeks to verify it has healed properly. If not, he’ll try to do a biopsy. I told him I felt like I’d turned into a big baby, seeking medical attention over every little thing. He reassured me that I was not a baby at all, but very smart to be safe, especially “given my history.”
That’s about it for the medical update – oh, I did have cataract surgery on my right eye in November and am seeing much better. I still wear my PROSE scleral lenses and am thankful daily to have them. Without them, my quality of life would be awful. My left eye vision has not yet deteriorated enough for insurance to consider the cataract “ripe” – maybe by next winter it will be. I also need another crown on my teeth this summer. The cataract and crown are afterthoughts because they aren’t scary, at least not cancer scary.
I love being retired and a full-time crazy cat mom. We now have 8 indoor cats and another 2 half-wild ones outside in addition to the other wildlife.
Our youngest grandnephew is graduating high school in 10 days, an event I feared I’d never live to see. He was in 5th grade when I was diagnosed with MDS/AML. Life is honestly very sweet, very, very good. I suppose that’s why we worry so about the possibility of it being cut short.
As usual, when you don’t hear from us for months or more at a time, assume all is well!! We will let you know if anything happens to the contrary.
Love to all!
Karen (and Michael)