My amazing friends and sister organized and threw yet another successful fundraiser for me and my family this past weekend. I am constantly in awe of the generosity and care that people have shown us during the last year. The money from the fundraiser is going to make it possible for me to continue to fly to Texas for appointments and treatments. YAY! I am going to write more about all those wonderful people and what they've been doing for us, but today's post is for all the people that asked me this weekend about exactly how the last year has gone and how I am feeling about where I currently am (in treatment and life).
So here's a hopefully easy to understand timeline of the last year (including some lovely parts that I know are indeed answered prayers), since there's so much info to tell, I am going to break it into several posts.
*The normally sporadic back & leg pain (along my sciatic nerve) begins to increase and occasionally interferes with daily activities.
*I see a new primary care doctor and she suggests physical therapy for the pain. I begin PT, but the pain just continues to worsen. I start some pretty heavy duty pain killers, but they don't work very well or for very long.
*The pain got so bad I was no longer able to take care of the kids. I would average about an hour of sleep per night. The day after Thanksgiving, I ended up the ER for the first of almost a dozen visits for severe pain. I continued with PT, but still things got worse.
*After much pushing we were finally able to get me an MRI of my back (this was after my PCP told me she wouldn't give me anymore pain killers and that she was concerned I might have just been a drug seeker...oh yeah she totally went there). The MRI showed some minor back issues (a slightly herniated disc and degenerative disc disease), but I was told by the back doctor (no clue what his name was) that they were not severe enough issues to be causing me this much pain. I then received a call from my primary care doctor (at 7pm on a Thursday night) that the MRI showed I had abnormal bone marrow all through my back and that it was often a sign of cancer, but try not to worry until I can get more information. Not worry???
*I met with a local hematologist and had a bone marrow biopsy. The phone call I got with results was shocking to say the least. I was immediately sent to the Clinic with an initial diagnosis of Harry Cell Leukemia (Dec. 18).
From Dec 18-Dec 25 I have very few memories. I only vaguely remember any of the hospital stay, so the next events are what people have told me happened.
*I had a gazillion tests done over the first week I was in the Clinic, more MRI's, PET scans, CT scans, another bone marrow biopsy and other tests. I slightly remember having a pretty nasty fall one day and hitting my head really hard, which didn't go over well with Joe or my mom considering I was not supposed to be left alone.
*It was determined that I did not have leukemia and I was transferred to a different floor of the hospital and Dr H became my oncologist. Dr H is definitely the first of some answered prayers. It was decided that I had Neuroendocrine cancer, but they had no idea where it was coming from and were shocked that it was in my bones. None of the doctors there had ever seen some with NETS in their bones. I remember being told later on that they contacted multiple other hospitals and doctors for consults and no one was able to give any information about my rare NETS.
*On Dec. 23 Dr H decided to start me on chemo. I later learned that all the other doctors told him the chemo wouldn't work on NETS (it usually doesn't) and that it was probably a waste of time. Dr H didn't listen and the first of all the prayers was answered. After just one dose of chemo, Joe and my mom said I improved so drastically they were shocked. By the 3rd day of chemo, I can remember a lot more. I was in so much less pain.
*Dec 28, I was discharged from the Clinic to go home. The chemo had made such a difference in me and from this point on I can remember everything fairly well.
*Dec 31, we celebrated Christmas and New Year's together as a family :o)
(To be continued...)