Hi! I hope everyone who lives around me enjoyed the beautiful weather today!
It was a very nice day today, but yesterday was icky. Lee drove me to Boston for my pre-transplant work-up. We left the house at 8:00AM and arrived home around 8:00PM. My first appointment was with the transplant nurse who took a thousand gallons of blood. Really it was only a shit load of vials. Then she explained the differences between this time and last time. The MAJOR difference is....I can leave the room this time!!! I can't tell you how friggin exciting that is to me. I have to wear this new super duper face mask when I leave the room and the physical therapist has to give me the okay, but I can leave my room. Yippee!!! There is also a gym on the floor. Patients can sign up for gym time and no other patient can be in there at the same time. They disinfect the room between patients. I don't go to the gym now so I'm not really seeing that in my future, but I might get bored enough. My chemo protocol will also be different. There are better chemos now so I need less and the side effects aren't as bad on my stomach. Everything else was about the same except I can wear my street clothes.
The next appointment was with the social worker. She meant well, but it wasn't the best experience in the world. She caused some commotion by things she was saying. One of the transplant coordinators stopped in the room to meet me. We have spoken on the phone a few times and I had told her about my book. She told me that she bought it and loved it!! She said it helped her to learn exactly what a transplant patient goes through. Very cool moment. Then, my doctor came in and made both of us feel a little better. He thinks I should do well. Lee came up with the idea that instead of seeing a Danbury doctor in between Boston visits, after transplant, that I should go the Yale. My doctor liked that idea and he said he would talk to Yale when the time comes and he'll get me in with another transplant doctor who will understand the nuances. Dr. Mac (Boston doctor) also said that my case in unique, because I still have my sister's immune system, but the other cells are mine. So, I guess, the rareness continues! Lucky me!!😏
My other appointments consisted of an EKG, an ECHO, chest x-rays and a pulmonary function test that we practically had to run through the hospital to another building to get to. Here's a funny story. When I was meeting with nurse who drained all of my blood out of me, she asked for a urine sample. Of course, from riding in the car for almost 3 hours, I peed as soon as we got to the hospital. She gave me the cup and vial in a plastic bag and asked me to return it when I could"go". Well, after we ran (not really, just a brisk walk), to the pulmonary function test, I had to pee. I used their facilities and prepared my urine sample. I had to go badly and feared peeing all over while breathing all kinds of weird ways. There I was, for the rest of the day, carrying around my peepee, in my purse, making sure it was standing up, until I could get back to my doctor. When I finally took it out of my purse, I realized that it was sitting on top of my lipstick. Thank goodness it didn't leak and Dr Mac was cracking up.
My timeline has changed a little bit. I will be admitted on April 19th and transplant will be April 25th. People keep asking what I need, so here are some rules for transplant patients:
I'm not allowed and flowers or fruit.
I'm only able to read new books, but honestly the chemo usually makes it too hard to concentrate.
I won't ask anyone to buy me underwear! LOL!
Send me notes and cards. It's nice to have the mail to look forward to everyday. I'll post the address when I have it.
Don't be afraid to call me. If I'm not feeling well or too tired, I'll tell you. If I sound weirder than usual, don't be offended!
My number one request is for people to please do bone marrow drives in your community, place of business, colleges etc. I'm one of the EXTREMELY lucky ones to have 2 donors, many people can't find one. Contact "Be the Match" for all the information on how to do a drive.
Enjoy the rest of the weekend, I know I will before my time in the clink!
Peace out peeps!
Saturday, April 14, 2018
Sunday, April 8, 2018
Guess the blood type???
Who wants to guess what my new blood type is going to be?
With my first transplant my blood type went from B positive to A positive, hence the name of my best selling book..."Be Positive to A Plus". Okay, it's not really a best selling book, but it could be if a million more people purchase it!! HAHA!
I don't know anything about my donor at this point so I thought it would be fun for people to guess
1. blood type
2. gender
3. age
I'll guess first and there is not a prize for the winner!
1. AB positive
2. male (yes, I could go from XX to XY with a chromosome change) weird huh!
3. 29 yrs old
One more thing, I added a blue "follow" box to the right, so if you want to keep up with all my crap, please follow.
Peace out Peeps! 😀
With my first transplant my blood type went from B positive to A positive, hence the name of my best selling book..."Be Positive to A Plus". Okay, it's not really a best selling book, but it could be if a million more people purchase it!! HAHA!
I don't know anything about my donor at this point so I thought it would be fun for people to guess
1. blood type
2. gender
3. age
I'll guess first and there is not a prize for the winner!
1. AB positive
2. male (yes, I could go from XX to XY with a chromosome change) weird huh!
3. 29 yrs old
One more thing, I added a blue "follow" box to the right, so if you want to keep up with all my crap, please follow.
Peace out Peeps! 😀
Saturday, April 7, 2018
Newest info and nice story
Happy Saturday everyone!
I received some new information on Friday. I do have a donor match and they have agreed to save my life!!! How lucky am I that I had my sister willing to be my donor 11 years ago and now a stranger!!! So I've had two amazing people step up to the plate for me and I can never thank them enough. There are no words that are appropriate enough to convey my appreciation and admiration to these two amazing human beings.
I will be admitted into the hospital on April 20th and the transplant will take place on April 26th. Hmmm, an April re-birthday, isn't that birthstone diamond. Very interesting...hint,hint. The days proceeding the transplant will consist of lethal doses of chemo. Isn't that a terrible way of saying it? I consider it only being lethal to the MDS. Good, kill that shit! But, be good to me! I will be getting different treatment this time, so I'm not sure what to expect. I'm just going to roll with it. I'm trying to see my friends before my extended leave and I'm organizing some stuff. I'm definitely feeling emotionally better than I was earlier in the week.
The whole terrible experience of trying to get a second opinion came to an end. By the time all the paperwork was checked by Yale, they said they needed more. They wanted things from different departments and it needed to be mailed to separate places and reviewed by them and then I would get an appointment. This nonsense has been going on for weeks. Finally, I said "That's enough"! I was pissed and I decided that I don't want to spend my next 2 weeks running to doctors and besides, I will probably be in transplant before any of it happened. So, I freed myself of one of my stress inducing chores.
The other day I was on the phone with my niece, Meredith, and I was telling her that I wanted a Vera Bradley duffle bag to bring to the hospital, but I didn't really like any of the new designs. She told me to send her pictures of what I liked and she would check out the Vera Bradley outlet near her house in Myrtle Beach. They carry some of the retired patterns. Later that day, I started getting text pictures of duffle bags from Meredith. I liked 3 of them. So Meredith said she would pick one out and surprise me. We were both excited!! I couldn't wait to see what she picked out for me and she was excited to surprise me. This morning my doorbell rang with my package and I was even more surprised than I thought I would be. Not only do I LOVE the duffle she picked out, but She sent me a notebook to write things down for my next book and a very soft scarf to wrap around my head when I'm bald. Meredith also wrote me a note that made me cry! My spirits have been lifted by my incredible niece and I'm going into this with a better attitude than I've had recently. Thank you Meredith, aka BGC!
I received some new information on Friday. I do have a donor match and they have agreed to save my life!!! How lucky am I that I had my sister willing to be my donor 11 years ago and now a stranger!!! So I've had two amazing people step up to the plate for me and I can never thank them enough. There are no words that are appropriate enough to convey my appreciation and admiration to these two amazing human beings.
I will be admitted into the hospital on April 20th and the transplant will take place on April 26th. Hmmm, an April re-birthday, isn't that birthstone diamond. Very interesting...hint,hint. The days proceeding the transplant will consist of lethal doses of chemo. Isn't that a terrible way of saying it? I consider it only being lethal to the MDS. Good, kill that shit! But, be good to me! I will be getting different treatment this time, so I'm not sure what to expect. I'm just going to roll with it. I'm trying to see my friends before my extended leave and I'm organizing some stuff. I'm definitely feeling emotionally better than I was earlier in the week.
The whole terrible experience of trying to get a second opinion came to an end. By the time all the paperwork was checked by Yale, they said they needed more. They wanted things from different departments and it needed to be mailed to separate places and reviewed by them and then I would get an appointment. This nonsense has been going on for weeks. Finally, I said "That's enough"! I was pissed and I decided that I don't want to spend my next 2 weeks running to doctors and besides, I will probably be in transplant before any of it happened. So, I freed myself of one of my stress inducing chores.
The other day I was on the phone with my niece, Meredith, and I was telling her that I wanted a Vera Bradley duffle bag to bring to the hospital, but I didn't really like any of the new designs. She told me to send her pictures of what I liked and she would check out the Vera Bradley outlet near her house in Myrtle Beach. They carry some of the retired patterns. Later that day, I started getting text pictures of duffle bags from Meredith. I liked 3 of them. So Meredith said she would pick one out and surprise me. We were both excited!! I couldn't wait to see what she picked out for me and she was excited to surprise me. This morning my doorbell rang with my package and I was even more surprised than I thought I would be. Not only do I LOVE the duffle she picked out, but She sent me a notebook to write things down for my next book and a very soft scarf to wrap around my head when I'm bald. Meredith also wrote me a note that made me cry! My spirits have been lifted by my incredible niece and I'm going into this with a better attitude than I've had recently. Thank you Meredith, aka BGC!
Monday, April 2, 2018
Freaking out
Today I spoke to the transplant coordinator to see if they found out anything about a match. She didn't have all the information yet, but it looks like there are some very good prospects. She also told me that I have a tentative admission date of April 19th. I felt like I was sucker punched when I realized how soon that is and I'm not remotely ready. I thought that I had dealt with my emotions until...I got off the phone. I put my head down and started crying. All I could think is how much I don't want to do this again. It's not fair!! I already did this once in my life and I can't believe that I have to do it again. I'm scared. Really scared!! I don't want to be locked up in a room again. I don't want to be sick again. I don't want the fevers and diarrhea and anything else that this may bring. I don't want to shit in a hat. I don't want to be constantly bored and lonely. I don't want to shower with instructions. I don't want to be far away from most of my friends and family. I don't want the isolation from people and all the medication. It's just not fucking fair!!! I already did all this shit with a good attitude and this time, I'm having a harder time. I ultimately plan on being my badass self, I just don't feel like it right now. I want to cry and be angry for a while.
This whole nightmare reminds me of my dad. For those of you who don't know, my dad died a month after I turned 17 and a week before I began my senior year of high school. I was kind of mad at him for a really long time. I couldn't understand why he didn't tell Jesus that he needed to stay. My dad had his first heart attack when I was 7 years old. There were many additional heart attacks throughout the years. My family watched my father get weaker with each new heart incident. They didn't have all the advances in heart procedures that they have now and if this happened today he probably would have survived much longer. He was 54 yrs old when he passed. He did tell the story about leaving his body during one of his heart attacks and going through a tunnel and seeing a huge white light. That's all I remember of the story. About two years ago I ran into one of my father's closest friends, Joe. Joe told me that the week before my dad passed, my mother called him and his wife to say goodbye to my dad. Joe and his wife were in my dad's hospital room and my mom and Joe's wife, Pat went out for a cigarette. Joe said to my dad, "Johnny, now is the time to make your peace with God". My father responded that he already had and he wasn't afraid to die. Joe told me that he thought of that conversation many, many times through the years. Joe passed away on my birthday last year. I hope and pray that he wasn't afraid to die either.
I've realized through my illness and also getting ill at a young age, that my wonderful, loving father wasn't supposed to live any longer. It wasn't his choice, just like me getting sick isn't my fault. I know if he could have danced at my wedding (both of them) and met my son he absolutely would have. I don't know if our lives have a blueprint that we help write before we are born or if God lets things happen because we all have free will and everything is connected or maybe a little bit of both. I do know that I'm not mad at my dad anymore for dying. I relate to him in so many ways. Now I understand the emotions he went through (and never showed us) while he was facing his own mortality. I know why he would get a little grouchy sometimes. I do the same thing. I didn't get the opportunity to say goodbye to my daddy and I understand why he didn't want me to see him that way. I was also really mad at God the first time I got sick. I'm not mad at Him either. I'm just trying to trust in God. I'm going to be scared and cry when I need to and be brave and strong at other times. Today is a big time crying day, but tomorrow will be better. I'll get through this as gracefully as possible and think of my dad every step of the way. He's a great example of an incredible human being!
Peace out peeps
This whole nightmare reminds me of my dad. For those of you who don't know, my dad died a month after I turned 17 and a week before I began my senior year of high school. I was kind of mad at him for a really long time. I couldn't understand why he didn't tell Jesus that he needed to stay. My dad had his first heart attack when I was 7 years old. There were many additional heart attacks throughout the years. My family watched my father get weaker with each new heart incident. They didn't have all the advances in heart procedures that they have now and if this happened today he probably would have survived much longer. He was 54 yrs old when he passed. He did tell the story about leaving his body during one of his heart attacks and going through a tunnel and seeing a huge white light. That's all I remember of the story. About two years ago I ran into one of my father's closest friends, Joe. Joe told me that the week before my dad passed, my mother called him and his wife to say goodbye to my dad. Joe and his wife were in my dad's hospital room and my mom and Joe's wife, Pat went out for a cigarette. Joe said to my dad, "Johnny, now is the time to make your peace with God". My father responded that he already had and he wasn't afraid to die. Joe told me that he thought of that conversation many, many times through the years. Joe passed away on my birthday last year. I hope and pray that he wasn't afraid to die either.
I've realized through my illness and also getting ill at a young age, that my wonderful, loving father wasn't supposed to live any longer. It wasn't his choice, just like me getting sick isn't my fault. I know if he could have danced at my wedding (both of them) and met my son he absolutely would have. I don't know if our lives have a blueprint that we help write before we are born or if God lets things happen because we all have free will and everything is connected or maybe a little bit of both. I do know that I'm not mad at my dad anymore for dying. I relate to him in so many ways. Now I understand the emotions he went through (and never showed us) while he was facing his own mortality. I know why he would get a little grouchy sometimes. I do the same thing. I didn't get the opportunity to say goodbye to my daddy and I understand why he didn't want me to see him that way. I was also really mad at God the first time I got sick. I'm not mad at Him either. I'm just trying to trust in God. I'm going to be scared and cry when I need to and be brave and strong at other times. Today is a big time crying day, but tomorrow will be better. I'll get through this as gracefully as possible and think of my dad every step of the way. He's a great example of an incredible human being!
Peace out peeps
Friday, March 23, 2018
Waiting and feeling good
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
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
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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