News (a little delayed)

Hey all!  Last month at my doctor appointment in Boston, I found out that I'm 100% donor.  As usual my reaction was strange and I said, "I'm a dude now".  It's a really good thing that my doctor gets my sense of humor and he always laughs at my stupid stuff.  Now that I have male chromosomes, I'm a true transgender, I just identify as a female!!  HA!  I've also realized that I can't register with an ancestry sight, because it would all come up as my donor.  So weird!!  I guess my sisters will have to find out for the family.  I'm no longer related to myself!  I hope my donor is an Italian German stud muffin with great longevity genes.

The other side of the coin is that I've been having some pretty bad flashbacks for the past 10 days.  I'm looking into a support group.  It's usually a smell that will set if off, but it also can be something I see.  It's a terrible feeling when I'm right back in my hospital room and it feels like no time has past.  I had this a little after the first transplant, but this is on a whole new level.  My heart seriously goes out to all our military men and women who suffer from PTSD, I can't even imagine reliving war. 😢
This crap is bad enough.

More good news is...I am eating!  I'm still not loving meat except for steak and I don't like a lot of bread yet.  I haven't tried my favorite foods like hamburgers, tacos and pizza.  I am completely addicted to soup.  I'll eat almost any kind of soup and sometimes I have to remind myself not to eat it more than once a day.  I also LOVE vegetables, especially green beans and fish! It's so odd. Now I need to be careful that I don't gain all that weight back.  I'm allowing myself five lbs right now and then I'll eat very healthy.

After much deliberation and the opinions of two friends, I have decided to post a picture of myself bald.  I figured that I've already shared so much stuff (some may think I've over shared) that it's only right to show you me in all my glory. 

Peace out Peeps!

What's happening these days.

To start with, I'm actually seeing people and hugging them.  That might not seem like a big deal for most people, but when you've been isolated for a long time, it's huge!!  I've missed seeing people and it's so nice to talk to people in person.  There have been a few times when friends haven't recognized me right away, because of my weight loss and wig, but it doesn't bother me.  Actually, it's kind of amusing.  It also makes it easy to hide and be anonymous, if I choose to be.  That really only works if I don't smile or speak.  Ha!!

I'm eating a little better even though food still tastes like dookie a lot of the time.  The things that taste especially bad are: bread, meat, most cheeses, pasta and potatoes.  Things that taste okay are: fish, vegetables, soup, pickles, some eggs and ice cream.  This makes me wonder if my donor is a pescatarian.  The most annoying thing about this is my new dislike of pasta and meatballs.  I fear losing my Italian card if this isn't remedied soon.  The struggle is real!!!

I'm seeing my doctors a little less often these days.  I'm down to every 2 weeks now and hopefully, the next time I go to Boston, Dr Mac changes it to every 3 weeks.  In about about 6 weeks I start getting all of my childhood immunizations again...for the third time.  It will take about 2 years to complete, so I am extremely cautious around children and sick people.  They are still trying to regulate my anti-rejection drug, because we suspect that I may have had a little graft vs host in my liver, but my enzymes looked a little better last week.  I'm getting my strength back slowly, but the exhaustion is difficult.  I almost said tiring instead of difficult.  That would have been funny.

Here's my big news, are you ready?  No more diarrhea!!  No more squirts or throwing away unders!!  All is well on the southern front, finally! Phew or should I say PU! I'm glad that shit is finally over. Here is my slight dilemma.  The chemo can cause some skin discoloration in various places.  I have a couple marks on my cheeks (face) and one above my eye and a big one on the top of my head.  The one on my head is the most disturbing because it is in the shape of... how do I put this delicately?  Okay, I'm just going to come out with it!  It's shaped like a phallic symbol.  There, I said it!  And I know what you are all thinking, but a member of my family has already called me a d__k head. 
That's all for now.

Peace out Peeps!

Biopsy Results

I'm going to start out this blog, not about my biopsy, but some sad news.  My dog, Nikki passed away suddenly last Wednesday.  The weird thing about this is, that my dog, Jake passed away while I was recovering from my first transplant.  I read that there is a theory that a pet loves you so much that he/she takes on your illness so you will be okay.  I don't know if this is true, but it's an interesting way to see things.  I'll post a picture of my beautiful girl! She was quite feisty and a bit bitchy at times, but she loved when I sang Twinkle, Twinkle Little Star to her or when I fed her by hand.  Okay, she had me trained and kept me in line!

So, I had my 100 day biopsy on Monday.  It wasn't too bad until...my sciatic nerve was touched.  Holy craparooie!  Once I started breathing again, it got better and didn't last long.  The only thing I said was that there was a pain going down the back of my leg.  I didn't swear or name call or say anything bad.  Then again, it wasn't my first rodeo and definitely won't be my last. Bone marrow biopsies really aren't that bad.  The worst part is waiting for the results!!

Lee and I were out for a little ride this evening and my cell phone rang with a Boston number...it was my doctor and guess what?  My friggin phone dropped the call, because we were in a bad area.  I said to Lee, "Hurray up and get me out of here."  I was freaking the "f" out!!  After about a minute, I called the doctor back and he said...my biopsy is ALL CLEAR!!!!!!  I'm still waiting on my chimerism, but all the bad shit is gone.  Now, it needs to stay that way.  I'm very happy and excited and hesitant.  I think hearing so much bad news for so long has made me a little nervous.  With that being said,  I'm going to revel in this great news and move forward.  It's going to take me some time to get my energy and appetite back, oh and my hair.  If any of you see me, I may have gray hair or brown hair or no hair, depending on my mood. I still have a long way to go, but I'm on my way.  I'll keep blogging, because this trek isn't finished yet.

Peace Out Peeps!

Things are looking up!

Hey everyone!
Since my last post i got those dreaded lines out of my chest!  It was very interesting because when i got the lines out the first time, I had to go in the operating room.  This time I went to a room like a recovery room, the doctor pulled the curtain, asked me if I wanted to try to take it out without lidocaine, so I said sure.  He took out a couple stitches and just pulled it out!!  It was AWESOME!  I was so stressed about going into another operating room that this was such a huge relief.  My first step back to some normalcy.

I'm still having some eating issues, but it's getting better slowly.  I still can't really eat meat or bread.  The doctor at Yale was not happy about my weight loss when we were there on Monday.  He kind of bugged me. My goal is to try to eat 900 calories a day before my next Boston appointment. I think I'm between 400 and 500 calories a day now, so I'm improving.  Eating more definitely makes me feel better and gives me a little more energy.  The good news is that I had plenty of extra body to lose, but now my body looks a little deflated.  Kind of like someone took a pin to a balloon...or two. 

August 3rd is my 100 days!!!  I'll be able to go out in public without a mask! Two weeks to go!  I'm going to keep a bit of a low profile until I have my bone marrow biopsy and get the results.  Please, if you are so inclined, keep me in your prayers.

So yesterday was my birthday and I'm so grateful that I made it to 57 yrs old.  A few months ago, I wasn't sure that I was going to see another birthday and here I am finally starting to feel a little more like myself.  Whatever lesson I was supposed to learn from all this, I hope I learned it, because I NEVER want to go through this shit again.  You didn't think I would make it through a blog without swearing once, did you? 
Anyway, last night I took a moment to thank God for another year and I prayed for many more.

Peace out peeps!

I'm still here!!

Hey everyone!  I haven't posted much because there hasn't been much to say.  My kidneys are doing better, so I stopped my IVs after two weeks.  I'm still not able to eat very well.  Most foods are very disgusting and my dry mouth doesn't help much.  I live on bananas, pastina, applesauce and chicken soup.  I recently added V-8 juice.  Doesn't it all sound yummy?  I have lost weight (yah!), but this shit sucks.  I make dinner and everything smells so good and then I taste it...gross!!!  I made tacos the other night, which I love, so I tasted it and I almost barfed.  My doctor doesn't seem too concerned yet.  He was telling us that there are people who try to eat and then throw up, so he's pretty happy that I keep everything down.

The best news is that I'm getting the lines out of my chest next week, as long as everything stays stable.  I will finally be able to wear a bra again!! I also only have to see a doctor every 2 weeks now.  Boston the beginning of the month and Yale the middle of the month.  Hopefully they will work well together and share all the information.  I'm a little skeptical at this point.  Time will tell.

I don't think I told you all that one of the side effects of one of my chemos is that your skin can turn black where you sweat.  Needless to say, under my arms, boobs, elbows and my nether region have all turned a lovely shade of black and then it all peels.  It almost looks like a bad sunburn and then some!  I also have some brown skin discoloration marks on my face and bald head. Everything is drooping more  than usual, because of the weight lose and I think my muscles have crapped out a little. I am one MFing ravishing beauty these days. 

I am feeling better and my energy is slowly coming back.  My 100 days is up on August 3rd, and I'll have another bone marrow biopsy around then.  That will tell us if this transplant got rid of the MDS.  Word of warning, I'm going to be a bitch while I wait for those results.  I guess that's it for now.  If anything else pops up, I'll share.
Peace out Peeps!

update...finally

Hi everyone,  I apologize for not posting sooner, but I was going through some emotional shit and I was busy being angry for getting sick again.  I'm feeling better now.  I still have angry and afraid moments, but it's not all the time.

Anyway, I was released from the hospital the day before Mother's Day, which I was happy about even though we couldn't do anything.  Just nice to be home.  I've relearned how to flush the three lines coming out of my chest and my dining room table is covered with medical stuff.  I take many pills throughout the day and I'm having a very difficult time eating.  Everything tastes disgusting and I force myself until I feel like barfing.  That usually happens after 4 or 5 bites.  This shit isn't over by any stretch of the imagination.  Last Friday when I went to Boston, I was almost admitted, because my kidneys were not good.  My doctor decided to lower my anti-rejection drug and have me give myself an IV every day for 2 weeks (hydration).  So I had to learn to do that too!  I'm getting tired of this whole thing!  I'm also on a hundred day semi-quarantine.  The 100 days began the day after transplant.  I'm not allowed to be around crowds and I have to wear a mask if I go places.  I'm on a special diet, but that doesn't matter, because I never want to eat.  I also need help from Lee to cover my lines when I want to shower, which is a pain in the ass.  I spend my whole day doing medical stuff and watching TV. Once a week I have a visiting nurse to change my dressing. It's going to be a really long 2 more months.  I don't sleep well at night so I'm always kind of tired.

On a brighter side, I am getting stronger.  I can make myself food and take care of the dogs during the day.  I'm not quite ready to make dinner yet, maybe that will happen next week.  We go to Boston at least once a week and that usually takes a day to recover.  I will try to be better at blogging!  I know people were wondering how I'm doing.  It's going to be a long recovery with bumps in the road, I just need to keep my spirits up. 

Peace out Peeps

Rough Time

I know it's been a while since I've posted, but this transplant shit is no joke.  My bad stomach got to the point where I was afraid to move around too much for fear of horrendous cramps and crapping myself.  It's been a cocktail of meds, most of which only mildly alleviate the discomfort.  It's been hell.  My emotions have been all over the place. There are days that I feel happy and days when I question why I put myself through this again.  I'm bored, but unable to concentrate on anything.  This is one fucked up ride.  It's funny, because one of my doctors said that I've breezed through this.  Yikes!!  I can't imagine what having a difficult time would be like!

I guess I'll fill you in on what's happening now.  I'm off of all IV's, which is awesome because it's much easier to get around.  It's very freeing to just walk into the bathroom and not have to unplug myself.  It's also weird. I keep forgetting that I'm not hooked up to something.  The big thing now is that I have to prove that I can eat.  This is much easier said than done.  Besides not having an appetite, I have a wicked sore throat.  I tried to eat a baked potato last night and it felt like sandpaper on my throat.  I haven't lost any weight since I've been here, because they kept me on IV nutrition until yesterday. So that sucks!!  If I can't prove that I can eat, they won't discharge me.  I'm stressed out over it! I just want to go home and put this part of this nightmare behind me.  I know that I'm still facing ups and downs, but this part will be over.  It's hard spending weeks in a hospital room. 

Enough of my damn whining!!  So, I'm almost bald now, which means a new wig!  I'm thinking something with that lavender grey color.  I haven't decided on a style yet, but I know my friend Christie will cut a wig to look cute.  Until I'm able to get out into the world, I'll probably wear my brunette wig for a while and really mess with peoples' heads.  I have many hats and bandanas to change up my look often.  I'll be incognito for a while, so no one better be talking shit about me.  LOL!

I'm looking forward to breathing fresh air soon and seeing my family and friends soon.  That's what is keeping me going.

Peace out Peeps!

Two transfusions

Yesterday Consisted of transfusions.  The first one was blood and they used 0 positive (universal donor). The afternoon transfusion were platelets. I have always had a reaction to transfusions so I was pre-medicated with Benadryl. These two transfusions bumped up my numbers so I wasn't as tired yesterday afternoon. The carnage with my stomach has not improved, but I think that I've devoted enough time to that subject...oh except I have lidocane for my sore butt.

Since I got here my bed had this metal pole running the length of the bed.  I never complained about it, until yesterday.  I think my fat ass compressed the memory foam to the brink of demise.  It was waving a white flag of surrender.  I think I heard it weep once or twice.  Anyway, I told my night nurse and she got me a new bed!!!  It felt great to sleep and not feel like my bed was taking advantage of me. Maybe my hiney wasn't sore from diarrhea, hmmm. 

Lee has been working hard to clean and fix up the bedroom.  So far, he has taken down the cornices, ordered and put up curtains, painted the room, bought a new air-conditioner and installed it, put the summer comforter on the bed,  bought me a new pillow and ordered new sheets. PHEW! He's been a very busy boy.  I can't wait to see it!  My environment at home needs to be very clean before they will consider letting me go home.

Many people have asked me when I'm going to be home and my answer is, I have no idea.  I've been here two weeks already and it could be another two to three weeks.  It all depends on when my numbers (blood counts) go up high enough that I won't catch every illness flying around.  I'm shooting for Mother's Day weekend, but that might be a little ambitious. Please feel free to ask me questions.

I have a question for you guys...Where are my cards?  Thanks to my step-son and his wife for sending me funny notes and thanks to my great-nephews and niece for drawing cards for me.  That was my only question. 

Peace out Peeps
PS I'm having baking withdrawal.🍪🍪

Another day, another bout of stomach cramps.

It's been almost a week since the transplant and things haven't changed much.  All my number have been going down, which is good news, but I have to be even more careful about germs than I was before.  My day consists of waking up around 4 AM  to have my vitals taken, labs drawn and weighed.  This is the time that the stomach cramps usually kick in  and the hershey squirts are not far away.  I wait until eight or eight thirty for my day nurse to come in with a dosage cup filled with pills.  This is different from last time because 11 yrs ago many of my meds were given IV, now they are pills.  I guess if I was barfing they would do IV.  I may dose off briefly during this time.  My nurse and I decide on a good time for me to shower.  My care team shows up around 10 AM  and they ask me questions, mostly about my poop, and they listen to my lungs. My care team consists of my day nurse, the bone marrow doctor who is in the rotation this week, a nurse practitioner, some woman in a white lab coat (I haven't figured out who she is yet).  We discuss my plan for the day.  The rest of the day is usually vitals, potty, mouth rinses and sleep.  Some days I have company.

So, Sunday was a really bad day.  The cramping was so severe, that I had to cancel any visitors.  Luckily, the meds made me very tired and I slept most of the day and night.  Saturday was nice. My sister, Marlene and nephew, Jimmy visited me in the morning.  Jimmy picked Marlene up from the airport and came straight here.  There is nothing like family to make a dreary hospital room, home!  Marlene was here yesterday too with Justine.  Oh my gosh, we were laughing hysterically!!  It's amazing how much better you can feel from belly laughing.

I just found out from my day nurse that I need a platelet transfusion today.  This isn't unusual, but I do need to shower early, because I have to be pre-medicated. I have a tendency of getting hives from blood and platelet transfusions.  That's all for now.

Peace out Peeps

Day 0, Transplant Day!

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!💓

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

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!

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.

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!

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!

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! 😀

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!

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

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

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!! 

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!

Biopsy tomorrow

So here is what's happening.  Tomorrow morning I head to Boston for a bone marrow biopsy.  They want to see where I stand with this dumb blood thing and how we are going to proceed from here.  Please say many prayers that I get good news.  I'm not nervous about the procedure, I'm a little nervous about the results.  I'm tired of being afraid.  I have a positive attitude, but this shit is getting old!!  I'll let you all know when I get the results.  Thanks for being my cyber-support group. ;)

Update and rant

To begin with everything is the same as it has been.  I have some pain in my hips and the joints in my right hand.  I think these are all good signs, but who the heck knows.  I'm having some trouble sleeping and I'm not sure if it's the stress of the situation or the treatments.  Either way, I'm glad I can nap during the day occasionally.

So here's the rant and the most likely reason I'm not sleeping.  Every time I had an appointment with my Danbury doctor, I waited at least one hour to see him.  This also made me very late for my chemo appointment.  So, an appointment that should have been one and a half hours turned into almost 4 hours.  Phew!  It's freakin stressful enough being in the "c" word center without unnecessary waiting, but the disregard for the patients' time is astounding.  In the beginning, I had to see my doctor every week unless I went to Boston and there was always an hour wait.  I understand that one of the awesome things about my doctor is that he spends time with his patients, but then they should spread out his appointments more so we aren't waiting forever and getting aggravated.  My blood pressure is up every time. Finally at one appointment with the nurse practitioner, I said something and an administrator came in to speak to me.  I told her my feelings about the waiting and I also told her how most of the TVs in the infusion area don't work.  The TVs don't affect me anymore because I'm not sitting there with an IV now that I'm getting shots, but what about those people sitting there all day getting chemo???  Even if their eyes are closed and they are resting, those TVs are important.  Most people don't want to be sitting there in silence thinking about the hell they are experiencing and fearing for the lives.  The diversion is about human decency and how to help these people through a very scary situation.  I was actually told that no other patients had complained, which I know for a fact was a lie. I was also told that the TVs were being checked, but I have my doubts that that ever occurred. The people who do try to help and make you feel comfortable are the nurses. Thank goodness for them.

Anyway, the admin. said maybe things would be better if I saw my doc first thing in the morning and then on my off chemo weeks, I could see the nurse practitioner.  That sounded like it could work and I had also requested my chemo early, because it was always in the middle of the day for 5 days and it was hard to do anything else that week.  Well, she completely f'ed up my schedule so badly that I haven't seen my doctor in 2 months.  She kept telling me that she was sending me a schedule, but that never happened!!  So, on 2/14 I had to go in for a blood count check, an appointment I called and requested, and asked for my schedule.  That was when I found out that my chemo beginning on Tuesday didn't begin with a doctor appointment.  You always have to see a doctor prior to chemo.  Now I'm PISSED!!!   I asked my nurse to please have a scheduler call me because they weren't at work yet when I was there.  I never got a call.  I called there on Thursday and explained my situation and they were able to get me in to see the nurse practitioner, but not the doctor. Well, not see the doctor until Friday and that didn't really help me any so I requested a phone call from him.  I needed and still need to find out exactly what is going on!!!  He NEVER returned my call.  On top of all this, I e-mailed my Boston doctor on Wednesday, because I was having an issue with my eye and I'm waiting for the results of my chimerism test.  NOTHING!!  F'EN crickets!!!!  I'm feeling very insecure with the care of my health and to be honest...I'm scared.  I don't know if my Danbury doctor knows anything about what is going on with me and and I don't know if the 2 doctors are even communicating.  The only time I ever get any information is when I go to Boston and that is once a month.  My Boston doc was the one who told me I only had to have my blood count done every other week.  I'm frustrated and i actually called Lee at work in tears on Friday.  Things weren't like this 11 years ago when I first got sick and this health care sucks.  Hospitals have become a business that has forgotten about the patients and administrators try to bullshit you in to believing their crap.  I had even called a patient advocate in Danbury and left a voicemail. Guess what???  No return call!!  All this stress isn't healthy for anyone and I hoping my rant helps alleviate some of my anger.  I don't know where else to turn.

The beginning part 2

Okay, now that you've already read all about the ERCP, I'll fill you in on the next illness.  The day after Easter I started with a cough.  By Friday of that week, I was running a fever and had completely lost my appetite.  Fevers suck for everyone, but for someone with a compromised immune system, it's a really big deal.  Lee brought me to the emergency room on Sunday, because 4 days with a fever is not very good.  The doctor at the ER was really good and he called up the oncologist on duty to review my blood work.  They agreed that everything looked fairly normal for me and they decided to do a test for erlichiosis, a tick borne illness.  That test came back negative, come to find out it was taken early in the illness so that is why it was negative.  The doctor thought it was some kind of virus.  My regular doctor put me on an antibiotic and then a stronger one and after another week of fevers, I went back to the ER.  The physicians assistant began to suspect erlichiosis and spoke to someone about putting me on doxycycline, but the answer was no.

I was getting weaker every day, the fever was seriously kicking my ass. I actually called my doctor crying more than once. I almost passed out in the shower and couldn't even make myself a cup of tea or soup.  After 19 days of having a fever, it finally broke!!!  I began to feel better, but not great.  I was still weak and couldn't eat very much.  I went on like this until the beginning of June, mind you this all began in April,  and I called my doctor telling her I still felt like crap.  She had more blood drawn and called a few days later saying it showed signs of erlichiosis.  I went on doxy and it took another 4-6 weeks to finally feel completely better.

In between all this, the surgeons office kept calling to schedule surgery to have my gall bladder out and my liver doctor was calling for me to have a colonoscopy.  You can only imagine the language coming out of my mouth.  I had had more than enough!!  The doctors were concerned about my liver and my high iron levels, so they wanted a liver biopsy done during my next surgery.  They thought that I might have something called hemachromatosis, which is a hereditary, so my family needed to know.  Spoiler alert...it wasn't hemachromatosis!  In August, I scheduled my gall bladder surgery.  I really wasn't looking forward to anymore medical nonsense, but I just wanted to get it over with already. Part 3 will be gall bladder surgery...what fun!

Feb 1st appointment

So yesterday was DLI #3 in Boston. Dr Mac told us that my chimerism is increasing and I am heading in the right direction.  My numbers are stable so I only have to have labs done every other week.  I was happy with that news, because I'm really friggin sick of going to hospitals.  Honestly, this shit is getting old and it's beginning to take a toll on me.  My stupid liver is still acting up and we are not sure why and my iron levels are still high.  These are the reasons I'm feeling a little down.
Anyway, I am doing another round of chemo beginning on Feb 20th and I won't be doing another DLI next month.  Instead, I will be having a bone marrow biopsy to find out if any of this is helping.  I think some decisions will be made after I get those results.  Be prepared friends, I will be a frightened, wicked bitch waiting for those results.  Don't say I didn't warn you!!  Hide the women, children and animals.  Men deserve what they get...LOL!  I'm kidding, they should hide too!  There is also the possibility of unwavering internet shopping. 

On the bright side, my nephew, Jimmy, spent the day with Lee and I at the hospital.  For those of you who read my book, it's the same Jimmy. And if you haven't read my book, why haven't you?  It's available on Amazon! Sorry, not sorry for the shameless book plug. Anyway,Jimmy always makes me laugh and he brought me the most adorable card that his son, Alex, drew for me!  I had a different nurse this time.  Her name is Liz and she was great. I had the same lab guy who brought me my first lymphocytes.  He didn't know what to make of me the first time we met. I know, I know, he's not the only person who has felt that way. This time, he joined in the conversation, after he defrosted the lymphocytes in a machine that looks like a small incubator.  The whole infusion took about 10 minutes and there were 5 times more cells than the last time.  I hope these are the kick ass cells that wipe out all those nasty, freaky, f'en bad cells!!!

I will continue with the part 2 of my previous post soon, I just wanted to give this update before I forget stuff.  I think I actually feel less sad now that I sat down and wrote about the crapola.  I;m moving forward with this day being more positive and baking (always my happy place) and getting out of my jammies.  I'll shower too!! No stinky Mary!!!

The beginning, Part 1

All this BS started about a year ago when my liver function tests were elevated.  This can be caused by a variety of things, fatty liver or a blocked bile duct and many other things.  My primary care physician originally thought that it was a fatty liver...from me being fat and not eating properly.  I went on the fatty liver diet and I lost some weight, but the enzymes were still elevated.  My PC doc decided to send me to a specialist after an ultrasound showed a poofy bile duct, meaning that they suspected a blockage.  After more testing including a CAT scan and MRI, it was discovered that my bile duct was blocked with a gall stone and there were also stones in my gall bladder.  Holy crap!!  My liver doctor told me that I needed a procedure called an ERCP and I would have to stay in the hospital overnight, because this procedure can cause pancreatitis and that can be dangerous. 

So, the ERCP is, in my opinion, barbaric!  A tube is shoved down your throat while asleep and laying on your stomach.  That's because you throw up bile during this and they don't want you to choke.  My abdomen was so sore after this and I also had bruised vocal cords.  Boy was my family thrilled when they found out that I couldn't talk much for a while!  When i was in the hospital, they decided to move me to another floor at 9:30 at night.  I would have been more pissed if I wasn't on dilaudid, but afterward I was annoyed and so was my doctor.  Recovery was quick and they had begun to bug me to have a colonoscopy and gall bladder surgery.  I needed a little break, but instead I got erlichiosis, a tick borne illness.  That will be addressed in part 2.

Here's my update for the present:
I just finished another week of chemo shots.  They are sore and it's a little difficult to wear jeans and underwear.  Never fear, I am wearing underwear!  No commando here!  Thursday will be Donor Lymphocyte Infusion #3.  Hopefully this will do the trick.  My hip has been sore on and off and I look at this as a good sign.  Hips are big bones, so in my case, when they are sore, good stuff may be happening.  The good cells might be pushing out the little f'er cells and I absolutely believe that is what's happening.  I'm staying out of crowded areas, due to the flu and all the bad germs flying around.  I'm being very careful.
Please keep the prayers coming!
BTW:  The infusion nurses at Danbury Hospital are awesome!!!

I'm doing okay

The DLI om Monday went well.  When I got to Boston, I headed up to the ninth floor for labs, then I waited until I got called in to see either Dr Mac or Chrissa (the nurse practitioner) and they reviewed my labs with me.  This time my platelets weren't so good, but that can happen after chemo and platelets are always the last thing to recover.  I remember during transplant there was an issue with my platelets recovering, so I don't think this is unusual...just annoying.  After the review of my labs, Lee and I headed down to the eighth floor to the infusion area.  My infusion nurse's name is Theresa and she will stay with me for as many infusions as I need.  Theresa put in an IV and drew some more labs for chimerism.  Oh yeah, my chimerism was slightly better from my initial labs.  It doesn't mean too much, but I look at it as going in the right direction.

Then, it was time for the infusion!  First thing is that I'm reminded what to look for if I get GVHD and when to call the doctor.  GVHD happens when newly transplanted cells regard the recipient's body as foreign.  When this happens, the cells attack the recipient's body.  I had GVHD in my liver with the original transplant.  It can also occur in the skin, gut or wherever the hell it decides to be a pain in the butt. So, I'm reminded that I may get a rash and it usually starts on the face and trunk.  I should call my doctor and get right to MGH (Mass General)  if this happens.  I may get diarrhea and that is fine as long as it doesn't get too bad.  If it gets bad, guess what?  I get to take a trip to Boston.  Man, I really hope that shit doesn't happen!  HAHA!  A long car ride, diarrhea and a new car, would not be a good combination!!

Anyway, a tech was in the room with a machine to defrost the lymphocytes that had to immediately administered after defrosting.  She was a very nice young lady who told us all about the flooding in Boston during the last snowstorm. Theresa came back into the room and hung up a small IV bag with the "stuff".  It actually looks like watered down blood.  I said that I thought it looked disgusting.  She told me to tell her how I really feel.  I wasn't being callous about the whole thing and I'm very grateful, but I still think it's gross. My vitals were taken before, during and after.  Oh, and I wrapped myself in the prayer shawl that the women at my sister Marlene's church made for me.  Isn't that extremely sweet of these lovely women?  The whole infusion was finished in about 10 minutes.  I didn't have any pain
in my arm from the preservatives which are larger cells that can cause discomfort.  My breath was a little stinky for the first day or so.  Kind of garlicky mixed with halitosis. PU!  All in all an okay day.  Now we wait, again.  I'll see Dr. Mike in Danbury every week to check my blood and I'll do another week of chemo starting on January 22nd.

Everything I do is outpatient, so please feel free to call or text, because I'm home and sometimes I get bored. I am staying away from big crowds because it's flu season and if you are even a little bit sick...stay away from me!  Actually, my friends are very good about this. The next post will be about the last year and how I got here.  Peace out for now!

Donor Lymphocyte Infusion #2

Tomorrow is my 2nd DLI in Boston.  This one will be slightly different from the 1st one because it will be a small bag IV instead of a syringe.  Also, the lymphocytes have been frozen, so I may have pain in my arm as it is going into the IV.  The preservatives for the freezing process will make my breath smell funny for a couple days and food taste weird.  I'll try to stay way from people while I stink. The joys of this whole process!

My skin is peeling like I had a bad sunburn, but only where I got the chemo shots.  Needless to say, any time I go potty skin is flying everywhere from my stomach shots.  I'm still kind of bruised where a few shots hit blood vessels.  The good news is that they don't hurt anymore!!  Boy, this is another crazy ride!!

The number one question people ask me is...how do you feel?  The answer is...I feel good!  I'm a little more tired than usual, especially on chemo weeks.  I haven't felt this good in a long time.  Last year was suckola!!!  I'll give the history in another post.
Please keep me in your prayers and I'll keep being positive!