Hi everyone – it’s been a while, time for another update. A mix of great and not-so-great news this time. I had really expected to be fully on the mend and almost normal at this point in time, but unfortunately that’s not quite the case.
The good news is that the anticipated difficulty re-learning to swallow after being on the feeding tube has not really materialized – I have slowly been introducing oral food back into my diet, and while eating is a challenge in several ways (loss of taste, taking a long time to chew until swallow-able), throat pain is not one of them – I can swallow just fine! Since that’s often a major challenge for people after this kind of treatment, I was anticipating that it would be for me as well. But happily, I can swallow without almost any difficulty and I’m incredibly grateful for that.
My ongoing goal was to get off the feeding tube – two weeks of oral eating, and I could schedule it for removal. I’m happy to say that I’m now on day 4 of all-oral, no “feedbag”, which means I could have the tube removed as early as July 17.
On the other hand, a separate issue that I thought would be short-lived turns out to be ongoing, and is now a major thorn in my side, and that’s anemia. Both my red and white blood cell counts are quite low (hemoglobin too) and that (coupled with my old friend orthostatic hypotension) is resulting in me having a lot of dizziness, vertigo, and light-headedness when getting up from chairs or beds, or when changing the pace of exercise (e.g. going from a walk to a stair climb). It’s scary and very disruptive to my life. I was sent to the ER for a syncope workup, which showed no physical issues with my heart.
A second blood panel yesterday was focused on discovering whether my issue was related to a deficiency of iron or B12, i.e. whether it was nutrition-related. That would have been an “easy” path as I could have started taking supplements or shots, but unfortunately those tests showed negative for nutritional deficiencies. And it’s now been long enough since the end of chemotherapy that we can’t explain my anemia (I keep wanting to say amnesia) as a side-effect of chemo.
Which means that it’s a mystery and we don’t know what’s causing it. And that it’s hanging on and not going away far past the time when we would have expected side effects like this to have gone away.
After the second round of blood tests and consults with several docs on my cancer team, they’ve now recommended it be pushed over to my GP as something to be looked at from another angle. Hopefully appointments to start that investigation will start soon.
Whomp whomp (sad trombone sound)
Hey man! I am just getting caught up on your odyssey here. Sounds like one damn thing after another. I hope you’re doing well today.
Sending good vibes and healing thoughts your way.
When I was recovering from my lung surgeries, the mantra “recovery isn’t linear” often came as a reminder to be patient and accepting with my body. Sharing in case it’s a comfort of sorts for you too, with understanding if it’s not right now since that non linearity can also be scary and frustrating! Happy for your swallowing progress and sending hope that they’ll figure out and treat the syncope if they haven’t yet.
Candace, sorry for the response delay. I love what you’re saying about “Progress isn’t linear.” I’m finding that more true all the time, and also “Progress isn’t quick just because you want it to be.” Over the past few days I find myself facing the reality that healing could be a long-term prospect, not something that will be over in a couple of weeks. Thank you.
Hey Scot-
I feel the frustration- hope your GP is able to figure this out soon. No cardiac issue is a good thing at least!!
My own recovery going well. I’m back at the office full-time as of 7/14. Walking already feels a lot better than it did before surgery, and I’ll do the other side as soon as they let me.
Here’s to our next trip to Chickadee Ridge together. I’m rooting and praying for you!
Hi Scott! i have a lot of thoughts on anemia as i struggled with it as a teenager and learned that not all iron is created the same, red meat is way easier to absorb than spinach, once you are low your body can’t absorb iron very easily. It stinks! My brother also had a stomach bleed that was very scary. I hope they figure it out!!! sending all the good, iron rich vibes! Thanks for all the updates!!
How scary! Fortunately my blood tests do *not* show a deficiency of iron, i.e. I am not dealing with nutritional anemia, which means I don’t need to worry about spinach or red meat, but it does leave an open unanswered mystery for us to solve, which I’m not loving. Thanks for your support!