I know I have been quiet here, but sometimes it is almost more than I can handle..
I do check in and I am reading, just that my heart is heavy with the loss of Tom... 4 months February 1, and then a month later getting diagnosed with multiple myeloma..
Someone asked how did I get diagnosed. I actually had no clue that I was ill, just thought I was worn down with aches and pain, and this is the way this disease operates......until the real pain comes. I always had what I called low back pain, and lived with it, just thought that is where I carry my stress. Then one day, I had pain in my right arm that was so excruciating that I knew it was not normal. I went to the ER of the hospital where Tom always went and the ER doctor was not listening and did not want to bother and just said I was probably having muscle spasms (I had just lost my husband and was under serious stress, he said) radiating into my arm, did not bother to do any blood work or anything and sent me on my way with pain pills and muscle relaxers.. When I got back to my house, an 1 1/2 hour ride, I was in screaming pain. I went to the local hospital, a friend took me I could not drive) where I was adamant that they do an MRI... saying that I have good insurance and if they did not pay I would......they did the MRI and found the MM... the little local Cape hospital while the big Boston hospital could not take the time or care enough to do the appropriate tests..
I did go back to Boston for treatment as they are cutting edge on this cancer and that is where I am now.. in treatment.. I am going for a second opinion to Dana Farber as what is important to me right now is care.. the care needed to get through this. My doctor is wonderful, but sometimes getting to her is difficult..
Anyway.. I have chemo twice a week... in the beginning I did radiation for a blood tumor on my neck that was causing the pain in my arm.. I did 10 radiations and had to stop as the side effects, they were radiating my neck, were horrific... esophagitis.. fatigue, you name it.. lately I say to myself.. what a baby, Tom never complained.. and yet each cancer is different and he said he very rarely had pain... I wish I could say that.
So yesterday was chemo....and because of the neuropathy in my legs.....they are cutting back to once a week, it was twice. What is difficult with this cancer is it causes nerve pain which is very difficult to manage and resistant to pain medication.. and sometimes almost more than I can bare. I am actually drinking tonic water as they say the quinine helps with this kind of pain and to sleep, well I have to take something for the pain or there is no sleep. Also steroids are involved in the treatment so I look like a plumped up chicken.....and I hate that, but if remission is to be mine I will persevere..
They caught mine very early and I was blessed with that and thankful that I did not just give up when the first doctor said muscle spasms.. there was no way this was just muscle spasms...
Also... they do not know what caused this cancer, but I do know this I was very involved in my husband's care, I adored that man and he was my soulmate, and during his care, maybe like two years ago I got shingles. Now, I was shocked that this happened, as I thought I had never had chicken pox, you have to have had chicken pox to get shingles... and my Mom said I did not have them.. Oh well... Anway, this is my soapbox, if you are of that age to get shingles, and have had chicken pox, really think about getting the vaccine. They think that when my immune system was practically nil with shingles, it may have activated a rogue bloodcell and it could have been the start of this whole thing... they will not say for sure, but it might have happened like that.. so... why not protect yourself with the vaccine and not have shingles because shingles are horribly painful and why have them if you do not have to... Shingles are the epitome of nerve pain and sometimes leave you with that pain. Off my soapbox now..
Where I am now.. I am doing chemo.. cut back to once a week and finally got some sleep last night, thank you pain pill that works, and trying to just stay focused on remission... please let me have some remission with this... Geraldine Ferraro has this and has had it for 20 years... Once in remission, they will do another bone marrow biopsy to make sure the blood numbers are correct, I am almost there.. Do not make me talk about how painful bone marrow biopsies are as bone does not freeze and so although they can attempt to do some freezing of the area where they are going in with the needle once they get through the bone and into the bone marrow, well it is not nice.. Also, there is talk about harvesting my stem cells, a procedure somewhat like dialysis....not sure when that will happen...but I will update when I know..
I thank you for asking about me, I thank you for keeping my in your prayers, I am doing the best I can, it is doubly hard for me as I am grieving for the loss of my husband and dealing with this illness.. I am doing the best I can..
Hugs to everyone here.. life is not alway easy, we just get through however we can... hoping for the best. I could use a little Disney magic, but not sure when I can go or how I will handle it.. Tom loved WDW so... it will be very hard for me to be there without him.
Marsha
Sometimes it just takes a little longer to get to. I am so sorry for all your pain too and I hope the med will give you some relief. (I remember you posted how mad you were when I told you I had to ration my pain meds!!). I know what you mean about them not getting to the dx initially either. I had the almost same thing happen as you. The little hospital kept looking for everything else and ignored the lump on my neck. At the big hospital it was 1 doc and 1 test and they knew it was cancer. I am glad you are going for a second opinion and hope you get the care that you need and deserve. Blessings to you always. Keep fighting tough!!
