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