Many people have asked me if I can go out. I go out all the time. I try to avoid large crowds and just crowded areas in general. I also avoid anyone who is sick. I try to avoid the mall as much as is humanly possible. There are things I need for my extended Boston stay like robes and crap like that. I've recently discovered the joys of eBay!! Now I just have to remember Lee's charge card info for future purchases. (0nly kidding...maybe!) The one thing I'm having trouble figuring out is tops to wear. I'll have something called a triple lumen hickman put in my chest. It's not a port under the skin, it is visible and looks like a large cross. It has three lines coming out of it and one is designated for chemo only. Needless to say, I have to find tops that will give the medical people easy access to that area on my chest. It's not easy to find button down shirts to fit my voluptuous bod!! Last time I had this done, I wore johnny coats, but this time I would like to change into real clothes every day, especially if I have company. The good news is, is that I already have a scar from the last one so I know exactly where the access needs to be. I don't want to wear deep v-necks, because I'm not sure that I will be able to wear an upper region garment and it might look gross. No one wants to witness saggy boobage. I did buy a robe thing to cover up the aging deflation. I will still attempt to look half way decent and not look like an old pole dancer. So, that's my wardrobe issue.
I've already told you all about my letter to the President of Danbury hospital. Well, the other day, I received a phone call from a person looking into my concerns. We were on the phone for about 40 minutes and I told her everything and I mean everything!! As of now, she is looking for a doctor who is a better fit for me and who has more knowledge of my disease. She also understood that after my transplant, I can't sit in a waiting room for an hour or more. First of all, I'll be too weak and second of all I can't be around that many people for any length of time. I have to say that I'm very happy that I've received a letter and a phone call about stuff. I really hope it isn't just lip service. Time will tell.
My requests for my records have been sent in, so today I called to make sure the hospital received the request and the person handling it had today off and no one else could help me. Another week has gone by without a second opinion. I'm actually confident with my Boston doctor and I don't really feel the need for another opinion, but Lee thinks it's important and I guess it doesn't hurt. You never know what could come out of it. I just worry about getting even more confused than I already am about everything. It's a roller coaster ride and I never cared for roller coasters. I worry about my family and friends and how they are handling everything. I know this is sucky for everyone, not just me. Well, a little more sucky for me than anyone else, but I acknowledge that it isn't easy for any of us. Okay, it's way worse for me!!! I'm getting emotionally ready for one hell of a fight. I'll cut a bitch!! The bitch is called MDS!
Peace out peeps
Friday, March 23, 2018
Tuesday, March 20, 2018
How I'm doing
When i first found out that I needed a 2nd transplant, I may have been in shock. Not as bad as the first time, because I wasn't totally surprised...just pissed. Someone recently said to me that lightning isn't supposed to strike the same place twice, but it did! I've also been asked if it's easier this time because I know what to expect? The answer to that question is yes and no. It's easier in the sense that I don't have the fear of the unknown. I have a general idea of what's to come. It's harder, because I know what is coming. I vividly recall the loneliness and missing my family and friends. I missed seeing people. I missed fresh air and wind. I missed my freedom. It sucked depending on other people for everything. It sucked pooping and peeing in a "hat" and having to call a nurse every time nature called. The other question is, are you scared? Yes, I'm very scared, all the time.
So, the most annoying thing that has happened was when I called my nurse practitioner and she told me that they would like me to stay at Hope Lodge for my 100 days. For those of you who don't know, the first 100 days after transplant are critical. That is when the body is, hopefully, engrafting or changing over to the new healthy cells. That's also the time that Graft Verses Host Disease (GVHD) may rear its ugly head. GVHD is when the new cells and old cells are kind of fighting with each other. It can happen anytime, but that is the bad time, because the blood is all f'ed up. That is the best way I can explain it in layman's terms. Anyway, when I had my first transplant, I came home after 5 weeks. We initially had to go to Boston twice a week and then it lessened as time went on. This time they want me closer and they want me to have a caregiver. Okay, I don't know anyone who can take that amount of time off from work and I'm not loving the idea of a stranger. This news sent me into a tailspin. I broke down and I felt completely overwhelmed. I was ready to change hospitals and Lee was bugging me to get a second opinion. I spent the next two days being depressed and fed up with all the bullshit. Finally, I discovered coffee filter flowers. Making them pulled me out of my funk. I spent two days dying and making flowers. I cleared my head and stopped crying. I needed to make some decisions. I called some friends and I spoke to my Danbury doctor and got the names of some physicians for a second opinion. I researched all the doctors and found one at Yale that I thought would be good. I called and they won't even set up an appointment until I have my records sent to them so I called Boston for my records. I received a call today from Boston and they want me to tell them exactly what records I want. How the hell am I supposed to know what records a doctor needs for a second opinion!!! I don't have an MD after my name!! I might as well after all this shit. So for now, I'm just trying to send back a release even though I don't know what to release. Could everyone make this crap any more difficult?
As it all stands now, I'm sticking with Mass General and I may or may not get a second opinion. PHEW!! I'll talk to the social worker about Hope Lodge and what kind of arrangements can be made. I'm keeping an open mind while also reminding myself that it's my life and I have a say in how this all pans out. I should know more about a bone marrow match in the next ten days or so. Until then, I will try to get myself organized for my extended Boston stay.
One more quick note. I received a response to my letter to the President of Danbury Hospital. The letter was from the Patient Relations Coordinator and "The issues and concerns you have shared have been forwarded to the Quality Department and appropriate department leaders for review". It was a very politically correct response, but I was quite impressed that there was a response at all. Also, my Danbury doctor called and said he owed me a call and I promptly told him I called a month ago. So the good news is, my letter was read and some action was taken. My fingers are crossed that they fix the TVs in the infusion area also!!
So, the most annoying thing that has happened was when I called my nurse practitioner and she told me that they would like me to stay at Hope Lodge for my 100 days. For those of you who don't know, the first 100 days after transplant are critical. That is when the body is, hopefully, engrafting or changing over to the new healthy cells. That's also the time that Graft Verses Host Disease (GVHD) may rear its ugly head. GVHD is when the new cells and old cells are kind of fighting with each other. It can happen anytime, but that is the bad time, because the blood is all f'ed up. That is the best way I can explain it in layman's terms. Anyway, when I had my first transplant, I came home after 5 weeks. We initially had to go to Boston twice a week and then it lessened as time went on. This time they want me closer and they want me to have a caregiver. Okay, I don't know anyone who can take that amount of time off from work and I'm not loving the idea of a stranger. This news sent me into a tailspin. I broke down and I felt completely overwhelmed. I was ready to change hospitals and Lee was bugging me to get a second opinion. I spent the next two days being depressed and fed up with all the bullshit. Finally, I discovered coffee filter flowers. Making them pulled me out of my funk. I spent two days dying and making flowers. I cleared my head and stopped crying. I needed to make some decisions. I called some friends and I spoke to my Danbury doctor and got the names of some physicians for a second opinion. I researched all the doctors and found one at Yale that I thought would be good. I called and they won't even set up an appointment until I have my records sent to them so I called Boston for my records. I received a call today from Boston and they want me to tell them exactly what records I want. How the hell am I supposed to know what records a doctor needs for a second opinion!!! I don't have an MD after my name!! I might as well after all this shit. So for now, I'm just trying to send back a release even though I don't know what to release. Could everyone make this crap any more difficult?
As it all stands now, I'm sticking with Mass General and I may or may not get a second opinion. PHEW!! I'll talk to the social worker about Hope Lodge and what kind of arrangements can be made. I'm keeping an open mind while also reminding myself that it's my life and I have a say in how this all pans out. I should know more about a bone marrow match in the next ten days or so. Until then, I will try to get myself organized for my extended Boston stay.
One more quick note. I received a response to my letter to the President of Danbury Hospital. The letter was from the Patient Relations Coordinator and "The issues and concerns you have shared have been forwarded to the Quality Department and appropriate department leaders for review". It was a very politically correct response, but I was quite impressed that there was a response at all. Also, my Danbury doctor called and said he owed me a call and I promptly told him I called a month ago. So the good news is, my letter was read and some action was taken. My fingers are crossed that they fix the TVs in the infusion area also!!
Saturday, March 10, 2018
Not great news
So here is the update without any beating around the bush. I need another stem cell transplant. My biopsy showed that my disease is stable, but my chimerism test showed that I'm all me (not good), except for my immune system which is still my sister. The doctor said that that is unusual. What the hell else is new!! Anything rare and unusual tends to be attracted to me. That includes my friends!! Ha!
The next step is to look for a donor. The transplant coordinator called me yesterday and said that I have 12 potential matches!! Finally some half-way decent news. Five of the potential matches will be tested further. They are trying to find the absolutely best match possible. There is still the possibility that my sister may be my donor again. The reasons they are also looking for other matches are because they like to use young, 20 something donors when possible. The other thought is that we don't know with any certainty what caused the relapse and why my body decided to fight my sisters' cells. The other side of the coin is that I did very well for almost 11 years with the original transplant. We will weigh the pros and cons for both once we have all the information.
There is a chance that I could actually have a third blood type in my lifetime, if we go with another donor with a different blood type. If the new donor is male my chromosomes will change from XY to XX. Granted, I've been told that I have some balls, but this is ridiculous!!
The transplant will be taking place in about 6 weeks. I get to live in Boston for a little while again. I wonder if I get a room upgrade considering I'm a frequent flyer. I think I'm going to go with fun color wigs this time. The good things are that I'll be thin again and I'll lose my post menopausal mustache along with the other hair. See, there is always a positive. For right now, I'm keeping my chins up, yes I said chins, but I will also have some bad days. Please be patient with me. I'll try to post more often and share with you the feelings I'm going through whether they are good or bad. This sucks, but I'm tougher that the suckiness!! I will admit that being strong is getting old. I can only trust that there is a reason that I have to endure this again.
Peace out peeps!
The next step is to look for a donor. The transplant coordinator called me yesterday and said that I have 12 potential matches!! Finally some half-way decent news. Five of the potential matches will be tested further. They are trying to find the absolutely best match possible. There is still the possibility that my sister may be my donor again. The reasons they are also looking for other matches are because they like to use young, 20 something donors when possible. The other thought is that we don't know with any certainty what caused the relapse and why my body decided to fight my sisters' cells. The other side of the coin is that I did very well for almost 11 years with the original transplant. We will weigh the pros and cons for both once we have all the information.
There is a chance that I could actually have a third blood type in my lifetime, if we go with another donor with a different blood type. If the new donor is male my chromosomes will change from XY to XX. Granted, I've been told that I have some balls, but this is ridiculous!!
The transplant will be taking place in about 6 weeks. I get to live in Boston for a little while again. I wonder if I get a room upgrade considering I'm a frequent flyer. I think I'm going to go with fun color wigs this time. The good things are that I'll be thin again and I'll lose my post menopausal mustache along with the other hair. See, there is always a positive. For right now, I'm keeping my chins up, yes I said chins, but I will also have some bad days. Please be patient with me. I'll try to post more often and share with you the feelings I'm going through whether they are good or bad. This sucks, but I'm tougher that the suckiness!! I will admit that being strong is getting old. I can only trust that there is a reason that I have to endure this again.
Peace out peeps!
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