Transplant day was very uneventful. The nurse came in and put Hans' (I named my donor that) cells on my IV pole. Lee, Bill and my nephew, Jim were here during transplant. Justine, Jim's wife came to visit tonight. I love my family The whole thing took 21 minutes. About a half hour later I started shivering a little and when my nurse came in we realized that I had a fever. They took many cultures and a chest X-ray. It's not unusual for this to happen, so I'm not overly concerned right now. A little Tylenol and my fever is slowly coming down. Do you know that it's kind of hard to type with that heart rate thing on your finger? Oh, and it isn't easy to pee and poop in those stupid hats either. The other day I didn't notice that someone didn't put the seat down on the hats, so I sat directly on them and pinched my ass. Ouch!
So, I haven't blogged for a few days, because I was very crampy and queasy. I basically felt like cocky, in more ways than one! I slept pretty much for 2 days and 2 nights. This morning I had another bout of the cramps, but this time they knew which pills would work best for me. Yah!! I have a whole mouth cleaning ritual with rinses and brushing my teeth. This is to help keep away mouth sores. I haven't eaten in 3 days and the doctor told me this morning that they are going to start a TPN (IV nutrition) tomorrow. I've already started my IV antibiotics and I'm really hoping that it doesn't bother my stomach more. This morning a physical therapist came to see me and she said some annoying things. Like, do you want to take a walk. Let me see...NO, I have cramps and diarrhea. BTW, she already knew that. Then she asked if I want to go to the gym when I feel well enough. By the time I feel well enough, I'll be heading home. I don't mind doing things when I don't feel like puking or pooping constantly. Finally, I told her we can play it by ear. She stopped back this afternoon and I pretended to be asleep. All the doctors and nurses have been incredible. I hope these cells like me!!
Peace out peeps!💓
Wednesday, April 25, 2018
Sunday, April 22, 2018
Feeling Icky
Well, the chemo has begun to kick my ass. I spent most of this afternoon in bed with bad cramps and yucky diarrhea. Not diarrhea in bed, that would really be gross, but not unheard of for me. My appetite is also in the crapper. Ha! I did get up and go for a walk at 5:30 am and I took a shower, put on cute clothes and then the badness set in again. Sleeping for any length of time is absolutely impossible. The longest stretch I've slept since I got here was 3 hours. Besides the fact that I'm getting fluids pumped into me constantly, so I pee massive amounts, I'm also awaken for vitals, meds and occasionally noise outside. Tonight is my last chemo so hopefully my stomach will calm down in a couple days, I get two days off and then Wednesday is the big day! Transplant Day! It's time to pee again.
Peace out peeps
Peace out peeps
Friday, April 20, 2018
Busy Place
Yesterday I had my triple lumen put into my chest in an operating room, then I waited hours for my room to be ready. It wasn't too bad, because Lee and my niece Justine, kept me company. Last night Jimmy visited for a little while and chemo began. One of the chemos is the same one I had last time, except this time it's a larger amount every night for 4 nights. The higher dosage can cause seizures so I'm on an anti-seizure medication too.
I took a video of my room and hopefully I'll get a strong enough signal to post it at some point. I've been told that I have one of the best rooms on the floor. I'll try to describe it. When you walk in there is a station for the nurse to input all the vital information into a computer. To the right are all my sheets, towels, johnny coats and pads for the bed just in case I crap myself. Next to that is my closet to hang some clothes and a safe for any valuables. Next to that is a long shelf where I put my t-shirts and notebooks, a copy of my book (to be a little self-promoting) , adult coloring books and sudoku books. I ❤ sudoku!! My bed is on the wall across from all that and the crapper is to the right of the bed. As you enter the room, directly in front of you is a wall of windows with a couch and chair in front of them. I'm sitting on the couch right now typing. The view is freaking incredible!! I can see the gold dome of the State Capitol, the clock tower at Faneuil Hall and all the planes taking off from Logan airport. I thought it was beautiful during the day and then last night with the skyline lit up...unbelievable!!! Can you tell that I'm enjoying the view?
I had a small bump in the road last night when my blood pressure decided to get very low. Thank goodness it corrected itself. This morning I had some stomach issues after breakfast, but I'm feeling better now. I think my body needs to get used to all the chemo. I took a shower and I'm following my mouth regime, which includes a lot of brushing and rinsing. The food sucks, but I'm pretty sure that is no big surprise! I could't really eat the eggs this morning, they smelled funny, but I was able to eat a couple chicken tenders for lunch. I'm enjoying having all my meals made for me and delivered! I mark off what I want and it appears. Is this what it's like to be a husband? Only kidding...kind of.
They are keeping me very busy here. I'm awaken many times during the night to take my vitals and then I chat with whoever comes in my room. One of my nurse practitioners is a retired Navy Lt. Col. He served in the Gulf War and Afghanistan and his son goes to school in CT. We have quite a bit in common so it was a nice visit. I also had a Chaplain, Eucharistic Minister, a person who cleaned my room and a dietitian. I'll start more chemo at 5:30 PM. I'm feeling confident.
Peace out peeps!
I took a video of my room and hopefully I'll get a strong enough signal to post it at some point. I've been told that I have one of the best rooms on the floor. I'll try to describe it. When you walk in there is a station for the nurse to input all the vital information into a computer. To the right are all my sheets, towels, johnny coats and pads for the bed just in case I crap myself. Next to that is my closet to hang some clothes and a safe for any valuables. Next to that is a long shelf where I put my t-shirts and notebooks, a copy of my book (to be a little self-promoting) , adult coloring books and sudoku books. I ❤ sudoku!! My bed is on the wall across from all that and the crapper is to the right of the bed. As you enter the room, directly in front of you is a wall of windows with a couch and chair in front of them. I'm sitting on the couch right now typing. The view is freaking incredible!! I can see the gold dome of the State Capitol, the clock tower at Faneuil Hall and all the planes taking off from Logan airport. I thought it was beautiful during the day and then last night with the skyline lit up...unbelievable!!! Can you tell that I'm enjoying the view?
I had a small bump in the road last night when my blood pressure decided to get very low. Thank goodness it corrected itself. This morning I had some stomach issues after breakfast, but I'm feeling better now. I think my body needs to get used to all the chemo. I took a shower and I'm following my mouth regime, which includes a lot of brushing and rinsing. The food sucks, but I'm pretty sure that is no big surprise! I could't really eat the eggs this morning, they smelled funny, but I was able to eat a couple chicken tenders for lunch. I'm enjoying having all my meals made for me and delivered! I mark off what I want and it appears. Is this what it's like to be a husband? Only kidding...kind of.
They are keeping me very busy here. I'm awaken many times during the night to take my vitals and then I chat with whoever comes in my room. One of my nurse practitioners is a retired Navy Lt. Col. He served in the Gulf War and Afghanistan and his son goes to school in CT. We have quite a bit in common so it was a nice visit. I also had a Chaplain, Eucharistic Minister, a person who cleaned my room and a dietitian. I'll start more chemo at 5:30 PM. I'm feeling confident.
Peace out peeps!
Address
Massachusetts General Hospital
Lunder Building Rm 1018
55 Fruit Street
Boston, MA 02114
I'll post more, once I'm able to get my laptop connected to WiFi. Hopefully I'll figure it out today.
Lunder Building Rm 1018
55 Fruit Street
Boston, MA 02114
I'll post more, once I'm able to get my laptop connected to WiFi. Hopefully I'll figure it out today.
Tuesday, April 17, 2018
About my donor
I just received some basic information about my donor. It's a 38 year old male from Germany and his blood type is 0 positive!! Third blood type in my lifetime and my chromosomes will change from XY to XX!!!
I'm wondering if I will start adjusting myself in public or watching TV with my hand down my pants. I'll never have to ask for directions again and beer burps will be epic. Oh wait, I won't have to pay attention when Lee speaks to me! Maybe I'll just want to bite my nails off instead of polishing them. I bet I'll start laughing hysterically when I release gas and be proud when the odor permeates the room. Then, I'll look around and pretend I wasn't the one who just farted. Maybe football will be life and maybe I'll completely relate to Tim the tool man Taylor and make a strange grunting sound. Will Home depot become my home away from home? Will I spend an hour looking for just the right flange? I will not sit with my legs wide open and use Axe products. Could I experience going commando? Umm, no. Hey, if I come out of retirement maybe I'll receive appropriate pay! Who am I kidding, I'm not coming out of retirement! 😏
All I know for sure is that a huge part of me will be 38 years old!! Booya!!!
That's all for now, I have to finish getting my shit together for Thursday and thinking of a title for book #2.
Peace out peeps!
I'm wondering if I will start adjusting myself in public or watching TV with my hand down my pants. I'll never have to ask for directions again and beer burps will be epic. Oh wait, I won't have to pay attention when Lee speaks to me! Maybe I'll just want to bite my nails off instead of polishing them. I bet I'll start laughing hysterically when I release gas and be proud when the odor permeates the room. Then, I'll look around and pretend I wasn't the one who just farted. Maybe football will be life and maybe I'll completely relate to Tim the tool man Taylor and make a strange grunting sound. Will Home depot become my home away from home? Will I spend an hour looking for just the right flange? I will not sit with my legs wide open and use Axe products. Could I experience going commando? Umm, no. Hey, if I come out of retirement maybe I'll receive appropriate pay! Who am I kidding, I'm not coming out of retirement! 😏
All I know for sure is that a huge part of me will be 38 years old!! Booya!!!
That's all for now, I have to finish getting my shit together for Thursday and thinking of a title for book #2.
Peace out peeps!
Saturday, April 14, 2018
Testing all day yesterday
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!
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!
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! 😀
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