Update after forever

Well hello all. I know that it has been forever. Forever and forever. I apologize. Sincerely. I’m not quite sure of the exact reasoning behind the lack of blog updates, other than I really didn’t have the energy to do anything there for a while and I just got into the habit of NOT updating. But, lately, I have been out and about more and seeing more people and it has come to my attention that some of you may still want to know what is happening in my world. So, here I am writing an update. I don’t think that I will include everything that has happened since I have been back home, but I will do my best to be complete in what is happening now. J

                 So, I am living back in Boise in a cute little house in the Bench area. Just me, my pup and my cat. Yep, I’m the old lady that lives with her animals and has no social life. J No really. Anyway, I am back to my job at the accounting firm full time and loving it. I think I would be going crazy if I wasn’t back full time. I would have way too much time to do nothing and just think. Thinking is not how my time is best spent. J I love my job ever so much. I am currently studying to take the Certified Bookkeeping Exams which is quite enjoyable. I’m hoping to take the first part, at least, of the four-part test this fall. I am, for the next few weeks, running the sound board for the musical Xanadu, which is playing at Knock ‘em Dead Dinner Theatre. That has been SO fun! Difficult at times due to the fact that my body is not used to late nights, but well worth it. I was craving theatre so much and this is the least energy-sucking way for me to be involved and well, it’s Xanadu. Awesome! J You should all come see me and it. It’s really quiet hilarious.

                Now, on to the health side of things before my eyes fall out of my head. This past week I spent a day in Seattle visiting the doctor. I have been seeing my oncologist here in Boise once a week since I have been home, but since the doctors in Seattle were the ones that actually performed my transplant, they are the ones I go see when there are issues. So, backing up just a bit, the past few months I have been dealing with a lot of side effects of having a transplant. Namely GVHD (Graft Versus Host Disease). GVHD simply put, is my body fighting the new bone marrow that was transplanted in. Now, some GVHD is a good thing, it means that my body is reacting the way it should to a foreign entity, but a lot of GVHD is just a pain. Literally. So, a couple months back I started having a lot of symptoms of GVHD.  I will go into those symptoms in a minute. My doctors here tried everything they could think of to treat the problems, but after a while, it seemed that some things just weren’t getting any better. So, off to Seattle I went to discuss with those doctors what options of treatment they had. It was decided that I would start a drug trial that seemed to be having pretty good results in other people with GVHD. So, I started a new drug called Rapamune.  This past week was actually supposed to just be a follow up on how the drug trial was going, but it turned out to also be a second session on how to treat different aspects of GVHD.

                Ok, so now on to what I was/am dealing with. The things that instigated the first return visit to Seattle to get treatment suggestions were various and all of them super fun. J Let’s see…. there was the mouth. My mouth has just been a mess this whole process from the day of the transplant forward. I have had a range of fun in my mouth from simple tightness in the cheeks, swollen gums, hypersensitivity to spices, salt, hard food like chips, extreme dryness in the mouth, all the way to current issues such as sensitive teeth, open sores near the opening of my throat (that’s a fun one I tell ya), and supposed nerve damage in my throat that causes my throat to close rather than open when I’m trying to swallow. Ya know when the doctor tells you to say Ah, and your throat opens so they can see more? Well, mine closes. The theory at the moment is that while I was still in the hospital and dealing with a very severe case of mouth issues due to chemotherapy, that there was possibly some nerve damage done to my throat. So after months of swishing with a topical steroid mouthwash, using the new drug from Seattle, also a drug that was supposed to stimulate my salivary glands and eating a LOT of soup, my mouth is actually FEELING better on the inside cheeks, but that’s about it. I will be seeing an Ear Nose Throat doctor soon to have tests done on my throat and then we will go from there. Yay for fun.

                Next, there are my eyes. Though beautiful, of course, J my eyes are causing me nothing but grief. They decided a couple months back to stop creating tears. Not that I was wanting to cry or anything, but I would like to be able to read, stare a computer, etc. without pain. Alas, Much to my chagrin, they are still not creating tears after months of Restasis treatment, use of many an eye drop and  a visit to an Ophthalmologist. So, from the Ophthalmologist’s recommendation, in the next couple weeks I will be having Punctal Plugs put into my eyes in the hope that it will help retain the little liquid that my eyes do create and lessen the aggravation. Here’s hoping.

                What else, oh yah, my skin. All of sudden a couple months back, my whole upper body suddenly became SO sensitive, that if someone simply tapped me lightly on the shoulder, I would have cried. (Had my eyes been able to produce tears J ). It was SO bad at one point that simply sitting against the back of a chair or lying down in my bed was almost too much to bear. Thankfully, however, my doctor prescribed Lyrica and literally, since the day after I started that drug, I have only had a couple days with sensitive skin. We are still not sure what caused the Neuropathy, but hey, as long as it is under control for the time being, I’m good. J

                Well, there is a semi-recap, but I must end or I’m gonna get a migraine. I don’t mean to throw this information out there in order for sympathy or response. I really am doing all right. I am cancer-free, living on my own, working and thoroughly grateful for a wonderful life. I am happy and in comparison to a lot of other transplant patients, really doing quite well. Just a few hiccups along the road. I hope that this blog finds you all well and happy. I would love to hear from you all to know how you are doing and to catch up. Thank you all so much for your support and encouragement, this process would have been immensely more difficult without amazing people helping along the whole way. J

Dani