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!