Long overdue update

Hello my dear followers. First I sincerely apologize for letting so much time go by without an update. No excuses, but there is a bit to tell you. I have no notes or calendars in front of me so this will not necessarily be in any kind of chronological order. Still, I hope it makes some sort of sense.

First I'd like to say my wife's neck surgery went well and although she still feels the pain she is slowing healing, a process that takes the full year. But she is a real trooper, especially these past several months since her surgery.

In early January I had a routine oncology appointment with my new doctor in Denver, except that he wanted to try an IVIG infusion, which I had never tried at that point. (Please look it up if interested as I myself still don't fully understand what it does or how it helps). So my wife drove me into Denver early for this four hour infusion and than a visit with the doctor. The only thing new was that my bone density DEXA scan came back and I now have osteoporosis in the hips and my legs and lower spine is no better with osteopenia. And on that note my legs and knees have been quite sore lately, sometimes waking me and keeping me awake. The doc believes it is most likely due to some of the meds I'm taking, like Fosamx +D, which is for the bones. Ok, so we are on the way home after the appointment and I begin feeling quite ill. Hot sweats and cold chills that night, a severe headache, upset stomach, and diarrhea throughout the night. So we made an appointment to go back to Denver but a snow storm was coming at us from that direction. We went on base to Acute Care instead but the doctor wanted me sent to ER because of stem cell transplant history and chronic-GVHD issues. He was good enough to get me an ambulance to take me to Prespretarian/St. Luke Hospital in Denver, which is where my oncologist and other staff perform bone marrow transplants. So they have their own wing for BMT patients. Exactly what we needed.

Well this is getting long so the bottom line is that they admitted me and kept me for three days for testing and observation. Everything came back negative except my (hydro)cortisone levels were low (more meds for that). My oncologist determined that he must have done it to me with the IVIG infusion. He said it is not often but people have been known to have adverse reactions like I did. He said their are different batch lots that we could try or a slower infusion rate, etc. I see him again early March and we'll discuss it further. The side affect was not fun and it took me several weeks, if not a month to fully recover from it so I want to be a bit cautious about trying again. I need to learn more about the benefits I guess.

I had a follow-up appointment with my oncologist's colleague the week after I was discharged from the hospital and he believes I once again have c-GVHD of the GI tract so I am back on Entocort. I just can't seem to cut back on my meds.

As for my eyes, I have been using the autologous serum tears for five weeks now but I got the instructions wrong initially and was only using them twice a day instead of four times. So to this point I am not seeing any improvement. But I know this sort of treatment can take time, which I have plenty of. I also had another lens patch put back into my left eye for pain relief but I think it has fallen out again because that eye is always stinging. I've been corresponding with Don about they c-GVHD of the eyes issue and he has been so helpful with his experience and knowledge. I really appreciate it Don and I will be asking about those Ciba lenses next time I am in. I know my eyes aren't bad enough to qualify for the Boston lenses so I won't even bother.

Ok, this is getting really long now so to wrap up, a couple of days ago I began coughing from the chest with some yellow mucus as well as a slight sore throat. Went into the local doctor who said other than the cough I am looking really good. So I am on Guaifenesin/Codeine syrup, which is to help loosen up the mucus (codeine to help with the chest pain from coughing). I do feel today I am coughing less so fingers crossed. I really don't want to end up in ER again.

Well I apologize for such a long post. It is my fault for procrastinating. Also, I don't want to leave this with such negative feelings. Overall, I am doing well and last week was finding myself able to get out of the house more often, including several walks around the neighborhood to walk the dog.

Happy Valentines,

David