The eyes have it!
Cataracts that is. I had a follow-up appointment with my ophthalmologist onbase after four months because my eyes haven't gotten any better. In fact I think they are worse. I can't even get very good focus using my magnifying glass. We the cataracts explain that. My left eye is worse then the other and besides the affected vision, they tend to hurt a lot, as if there is sand in my eyes. I put drops in to sooth them and then I see worse because of the fluids on my eyes. Just one viscous circle. So the doctor has referred me to a corneal specialist who as luck may have it, is also at the Air Force Academy. What I do know is that these cataracts are steroid induced and they can be treated or surgically removed when the time comes.
Last week I also saw my primary care doctor who has adjusted some of my meds to see if we can't get my energy levels higher. I also saw a pain management specialist, who after reviewing all the evidence, has decided to begin with an MRI of the thoracic and lumbar areas and to try me on oxy cotin, which is morphine in extended dose of 12-hours. If it doesn't work out he may increase the dose or try something else. My entire body aches at times from medication side affects, bone density loss, chronic graft versus host disease (c-gvhd) to the eyes, mouth and lungs and my chronic back and abdominal pain.
And finally, I saw my new oncologist in Denver and my wife and I really like him. He obviously has the knowledge in bone marrow transplants we were looking for. In fact, he spent some time at the Fred Hutch and now performs BMTs in Denver. He wants to fight my lung disease a bit more aggressively and so has prescribed me with Sirolimus, another immunosuppresant drug. He also reduced the Tacrolimus because Sirolimus tends to cause the Tac levels to rise. And in fact they did, so much that for now I have come off the Tacrolimus but have increase the prednisone to 60mg. And right when I was shaving a few pounds off my belly. I guess it will soon be back to the 2am eggs on toast and other nightly delights.
Well I can see that my updates are sounding more like gripe sessions. Overall I cannot complain. I have a wonderful family at my side, including a lovely wife who is always there for me, not to mention taking care of the boys and herself. She goes in for a second round of neck surgery in two weeks.
Love to everyone,
~David
5 comments:
Dearest Brother of mine,
It didn't sound like griping just giving us the updates we have been wanting. I hate that you are feeling so poorly and that we are so far away from you. I just want you to be able to have a better quality of life and pray that this new oncologist and pain management doctor can give that to you, it would be the best Christmas present ever. Know that we love you and that you are always in our thoughts. Big kisses to the family
Love, Lisa
Hi David
I have followed your blog since before our respective transplant.
I am sorry to hear how tough things still are for you.
This post transplant period is not easy. I still have on going issues for which there seems to be no explanation nor end in sight.
I feel for you; you are not alone.
Susan
London UK
Hi David, I follow both your and Lea's blogs and am sorry to hear the c-gvhd is causing you so much trouble. I just went for my latest pcr test so should have the results in about five or six weeks. Wishing you and your family a lovely xmas. ps Don't feel as though you're griping. It's really a very good reference for the real issues (that often the drs gloss over)and for dealing with gvhd and other issues if, on the off chance, I ever have to go down the transplant route. I think of both you and Lea often and hope you're both doing well. Take care, Stephanie (Melbourne Australia)
Hi David, I follow both your and Lea's blogs and am sorry to hear the c-gvhd is causing you so much trouble. I just went for my latest pcr test so should have the results in about five or six weeks. Wishing you and your family a lovely xmas. ps Don't feel as though you're griping. It's really a very good reference for the real issues (that often the drs gloss over)and for dealing with gvhd and other issues if, on the off chance, I ever have to go down the transplant route. I think of both you and Lea often and hope you're both doing well. Take care, Stephanie (Melbourne Australia)
Gripes??? nah... just letting it all out can help ya feel better -- honest about the truths of living with cancer.
you are a hero because of your honesty and your commitment to sharing the journey through all its twists and turns.
You and your family are always amazing in how you tackle what must be done... surgeries, travel, doctor drama, eyes, lung issues.
Praying you get everything you need to keep on keeping on...
peace,
Rhonda
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