WHOA, it's been a while!

 I can't believe that I haven't blogged since August.  Yes, this font may seem a little large, but that might give you the hint that my eyes are still an issue.  They are stable and I may be getting an eyelid lift and cataract surgery in January or February, so that's good news.  I'm going to have an ultrasound on my legs next month and if the clots are gone, I may be able to stop a pill!  I had another IVIG infusion to pick up my immune system and the good news is that I was able to have it at Yale.  So much closer to home. And because I've lost some weight and other factors, I like to stress the weight loss, the infusion only took an hour and a half verses four hours.  I had my third vaccine with only a slight headache and backache.  Not bad and I feel slightly more comfortable.  My doctor still doesn't want me in restaurants, around crowds , and around un-vaccinated people.  I can go into stores as long as they aren't crowded.  I get very nervous around too many people. I had a panic attack once and that wasn't fun.

Okay, I have a little rant.  Actually, it's a repeat rant, because people don't listen to me.  Here we go....

I HATE when people don't tell me things that are going on in their lives, because they think that I have enough happening with my health.  I've had people say to me many times that they didn't want to burden me.  Do you want to know how that makes me feel?  It makes me feel like shit!!!  It makes me feel alienated from your life.  It makes me feel like I don't want to tell people anything about my health, because it will be held against me!!  If anyone thinks that I can't tell when things are being kept from me, you are wrong.  Phone calls lessen or are very short.  The tone of voice is different and I'm not an idiot.  BTW, I am one strong bitch and I can handle my shit and yours.  As a matter of fact, your shit would be a welcome change, I'm sick of myself.  That's all on that.

On a brighter note, I've continued in comedy and I just did a show on Nov 1st (virtually).  Christine O'Leary is the comedy guru at the Ridgefield Playhouse and teaches the comedy workshops.  New classes will begin around February, so if anyone is inclined toward comedy, take the workshop! Do it, do it, do it!! Believe me. you won't be sorry!!  Christine is not only a great mentor, but she lets you be yourself.  The other comedians are no joke.  HAHAHA! You might think that it's just comedy, but it's so much more. It's a learning, laughing, nurturing and accepting environment.  That's my PSA!

Happy Thanksgiving All  

Sorry for the Delay

I know it's been a while, but when I'm in stand up comedy mode, that's all I write.   Now that the show is over, I'll be blogging more...maybe.

Here's the dealio.  I found my old Danbury Oncologist, with the help of a friend, at Yale, emailed him and he was happy to see me again!!!  He isn't only seeing breast cancer patients like the fibbers at Danbury hospital, aka hellhole, told me.  I'm surprised that place hasn't gone up in flames with all the pants being on fire!!  The awesome part is that my Boston doctor and Yale doctor and eye Yale doctor are all working together.  Finally!  What a relief to have a team again.  I also went back to my Primary Care doc and she's helping out with the diabetes.  This crap is hard to figure out.

Oh, I don't think I posted that now I have blood clots in my legs, so I'm on Eliquis.  I keep calling it Cialis. LOL!  They suspect that this too is CoVid related.  When I called the hellhole to make an appointment for an ultrasound of my  very swollen leg, they told me they were backed up and it would be 3 weeks.  I reiterated the words BLOOD CLOTS!!!  It's bad enough that they refused to ultrasound my legs when I was in the hospital for the Vid, but now they wanted me to wait 3 fucking weeks!!  No!!  Funny how they fit me in in 5 days after I raised my voice and it really wasn't busy when I went there.  The tech was actually very good.  They refused to let me leave the hospital until they spoke to my Boston doctor and knew I was being cared for with meds.  I was ignored and then there was concern.  If I blew a clot, those heffers would be so sued.

I really miss doing things and being out in public, but I can't take any chances.  I have good days and bad days.  More good than bad.  My breathing and stamina are slowly improving.  I've learned that if I don't get enough sleep, I struggle the next day.  My eyes are not getting much better, they burn and sometimes they are downright painful.  The newest thing I've tried is moisture chamber goggles when I sleep.  Oh, baby, baby, I'm so damn attractive!  My mouth GVHD is better and my blood counts looked pretty good last month.  The swelling in my leg is going down.  All in all I'm hoping all this is a turning point.

Peace out Peeps, 😷 and vax up so I can get out of this damn house!

Never a dull moment

 I think it was a little more than 3 weeks ago since I posted and of course, stuff has been happening.  I was leaving quest in Bethel when I believed the curb was a small step, but it was a large step and I started the slow motion fall to the ground.  I ended up on all fours like a missionary with my papers and purse flying all over the parking lot.  Lee jumps out of the car and starts telling me to get up, but I was trying to figure out if anything was broken.  It wasn't!  I'm a strong little beotch!  The nice lady from the hair salon had run out to help up us.  My hands and knees were pretty swollen and bruised.  After we got home and I was able to get cleaned up, I noticed that each hand had red bloody marks.  Hmmm, stigmata?  I checked my feet and nothing.  So close.  I did hurt my back in my tumble.  Some days are better than others.

Then a week later my doctor called and told me that my CMV was high.  That is a virus that lies dormant in about 40% of the population, but guess what?  That's right, I got the full blown virus.  He said that it feels like a really bad flu.  I feel like I always do.  We came to the conclusion that I always feel kind of crappy.  The doctor put me on a very strong anti-viral that will lower my blood counts, making me even more tired. Yippee Skippy!!  Oh and the med will bother my stomach. Just get rid of this damn virus!

Next visit was my first appointment with a new Danbury oncologist.  My Boston doctor, Lee and myself were hopeful that we could be a team dynamic.  What a joke!  Danbury doctor just wanted to up charge me. She tried to make me an appointment for a mammo, but I told her no because I already have a doctor. She wanted me to have my blood work done there and I said no, because they aren't on the same system as quest and Boston. She had them take blood anyway and never called me with any results.  She was telling me that my infusions (if I needed anymore) had to be approved through insurance even  though I told her it was already approved.  She said I would need a port put in my chest. No I don't and if the time comes that I need one, that hell hole won't be doing it.  Then on Friday morning I get a call from the Danbury office to set up my infusion.  What infusion? I never heard that my IgG levels were still low.  Someone was trying to pull the wool over my eyes.  I don't think they realize that this isn't my first rodeo.  With all the oncologists I've seen over the years, I've never dealt with such a dismissive doctor.  BTW, my Boston doctor called me later that day and said I didn't need another infusion yet.  I may in a month or so.  We'll see what happens. The search is on for another oncologist, but NOT at Danbury hospital.  Now I know why all the good doctors left.  Their slogan..MONEY OVER PATIENT CARE.  Disgusting!

I did see a specialist for the GVHD in my eyes at Yale and we are trying different things.  The newest thing is doxycycline.  I never knew, but it's also an anti-inflammatory.  My stomach isn't too happy with this addition, but if it helps, I don't mind getting nauseous a couple times a day. I like this doctor and the people at Yale are very nice.  One of my old doctors works at Yale, so I'm going to email him to see if he has a recommendation for an oncologist there. He's only doing breast cancer now.

On a brighter note...I went back to comedy!  Dr Mac gave me the okay to perform in person.  That's something I wasn't sure I would ever do again.  The performance is June 26th at the tent at the Ridgefield Playhouse so save the date! This group is tinkle your panties funny!  More details to follow.

Peace out Peeps 😷 Vax it up people!

My poor hands.  

CoVid experience from November

I said that I would share my CoVid experience and I'm finally going to do it.  First, a comment made by someone gave me the impression that some people are tired of hearing about my medical stuff.   If that's the case, it's fine if people don't want to read my blog.  Also, if I talk about it too much, it's because that's what I do all day long.  Med schedules, doctor appointments, trying to find doctors, investigating doctors, calling places more than once because no one gets back to me, getting blood drawn, only seeing medical people and new illnesses popping up that I need to figure out. I don't go out places or see my friends. I can't do so many of the things I enjoy. This is my life, so it's what I talk about. It might be hard to hear, but it's even harder to live. This virus and GVHD have changed everything. 

In November, on a Saturday, I developed a slight cough.  I knew exactly what it was.  Sunday, the cough was gone and I felt fine.  Monday I woke up with a fever and went to get tested.  I was okay for the next few days and started to have more labored breathing.  I already have GVHD in my lungs so it was very hard to determine what was happening.  Friday morning was bad and I started to pass out on the toilet, but I've learned through the years to lay down when that feeling hits.  I curled up on the bath mat and I was yelling for Lee.  Lee called Boston and they said to go to the ER.  I'll leave out all the gorey details of getting to the hospital. 

I was taken into a room and so much started happening at once.  The doctor called on a phone and I have no idea what he was saying.  I was scared, I was sick and I didn't know what was happening.  I realise now that most people, even the medical professionals, didn't know what was happening.  The nurse who was with me was giving me shots and told me what they were, but I have no recollection what was really going on.  I do remember one doctor asking me if I wanted to be put on a ventilator, if it came to that.  I couldn't believe I was hearing those questions about me.  I remember crying to my sisters and saying, "What did I ever do to deserve all this"?  It was horrible!  I was pissed.  I'm still pissed.

Eventually, I was brought up to a room.  The transport person covered me with a white sheet, which freaked me out, and then i realized the covid ward was also the geriatric ward.  Fuck NO!  Then I was put in the room with someone who had infections and again..a big fuck NO! They ignored me.  I was physically shaking.  The room was terrible and how dare we treat our elderly so poorly.  I talked to my roommate when she would get agitated and I was able to tell the nurses that she liked orange juice. I knew she was catholic so I said a prayer with her.  I wonder if I was put in the room with her for a reason.  We did okay together.  She passed away a couple weeks later and I think of her often.

The day after I was admitted, I was released.  The goofy doctor (that is the most polite word I could find to use) told me that I was kicking covid butt.  I had received the plasma etc., but come to find out one of the treatments was never completed.  The plasma was also a slight problem because of all my different blood types.  The supervisor of the blood bank took care of my stuff personally.  I had more than one person tell me that I'm special.  Well, I know that!!

This is only part one, because I was admitted into the hospital again in less then a week.  It was bad.  Part 2 to follow.

Peace out Peeps 😷

Not my photo, but awesome!

Dr visit and Infusion

 Friday was an interesting day.  Lee and I were on our way to Boston for my IVIG infusion and Doctor visit, when we hit snow!!  It was almost a white out at one point and lucky for us the roads stayed fairly clear.  We were on the outskirts of Boston, in the left hand lane, when a snow plow on the opposite side of the barrier, violently threw wet snow on all the cars in our lane.  It was scary!  I am still shocked that there wasn't a major accident.  Stupid head plow driver!

The IVIG infusion is to raise my IgG level, meaning my immune system.  In my 14 years of going through all this nonsense, I've never had a low IgG level.  We suspect it's another side effect of covid, as if diabetes wasn't enough.  What a mofo!!  I did get both vaccines without anything major, other than a backache. Thank goodness. There is a thought that because my immune system is low, my body didn't fight the vaccine, it just accepted it.  Kind of cool.

I was able to see my doctor in person for the first time since October.  He came to the infusion area to see me.  He said that my blood work looked good.  We are hoping that I won't have to do another infusion.  It took us over 3 hours to get to Boston, 4 1/2 hour infusion, (with Lee waiting in the lobby) and then a ride home.  We don't like 11 hour days with traffic. 

I hate my trips to Boston.  They always freak me out, but once I get there my emotions change.  I feel at home there.  I feel safe there.  It always ends up being hard to leave the comfort of being well taken care of.  I know the doctors and nurses.  I even had the same infusion nurse that I had over three years ago before transplant.  It's nothing like the complete cluster F at Danbury Hospital, with the exception of the awesome nurses in Danbury. I will be sharing my Danbury Hospital covid nightmare very soon. 

Our awesome neighbors Lynda and Tom took care of our dog, Sadie, when we went to Boston.  When we got home, there was a very pretty flower arrangement waiting on the coffee table.  How sweet is that!!  They are the same people who made sure we had Thanksgiving dinner after I got out of the bad hospital.  There are some very kind people in this world and we are lucky to know some of them!

Peace out Peeps! 🐥😷

The Never Ending Saga

 Well, my last labs proved to be interesting.  I had the labs done on a Friday and early Saturday morning, I received a call from the transplant floor at Mass General.  That is NEVER good! My blood sugar was over 500 and I could be in crisis.  I was in a tailspin.  The nurse asked if I have a Primary Care doc and I don't.  Then she asked if I have a local oncologist and I don't.  My PC told me that I have to be a new patient even though she knows that I've been under constant care because of transplant.  I can't even get in to see her until July.  If anyone has a really good PC, who wouldn't be afraid of treating me, please let me know.  I make doctors nervous.  What a bunch of babies!!  Anyway, after I had a minor meltdown, Dr Mac (Boston) called me from his private cell phone at home, and calmed me down.  The prednisone is messing me up and causing trouble.  We are trying to lower it and I was put on yet another pill along with a pill for diabetes.  I think I'm up to 17 or so meds every day.  I've also learned how to do the finger pricks twice a day.  I have charts and alarms on my phone just to try and remember all my medications.  PHEW!

On a brighter note, the diabetes was making my vision worse, so that is improving.  Not perfect, but definitely better.  I also put myself on a diabetic diet and I've lost some weight.  WooHoo!  BTW,  so many thing on the Internet about diabetic diets are contradictory.  I'm doing balanced protein, veggies, fruit and whole grains.  I'm sick of chicken...blah! Chicken sucks!

This afternoon I'm getting my vaccine.  I'm nervous.  When I asked Dr Mac about it he said that they've never had a 2 time transplant patient, who had covid, get the shot.  I'm the guinea pig.  Hey, is that a crack about me being Italian?  I'm offended.  I just wanted to jump on the ridiculous band wagon of being offended by everything.  I better stop talking about that now or else it could be a very long rant.

Please keep me in your thoughts this afternoon, that I get through this vaccine easily.  I think I deserve a break, if I do say so myself.

Peace out Peeps 😷

Last virtual visit...meh!

 Oh boy, one step forward and two steps back.  My red blood cells are recovering and my platelets are good.  My IgG, which is my immune system, is in the crapper.  This means that I need an IVIG (gamma globulin) infusion in Boston, but nothing seems to be getting set up.  I've called and emailed a few times, I guess they are working on it.  I asked if a nurse could come here and give me the infusion with a pre-med because I always get hives from stuff like that.  Maybe that's what they are working on. Needless to say, this is making my isolation even more intense and sad.

My eyes are not getting better with the auto serum.  That's only half true.  My reading has improved, but my distance vision is a lot worse.  It's really hard to even watch TV.  Everything is very blurry.  I see (well kind of) my eye doctor on Friday. I hate the idea of going into the office, but something really needs to be done soon.  I would cry, but I actually do not have any tears, so what's the point.  The dry cry is useless.  Oh, and I can't taste most food.

I'm not going to lie, I have good days and bad days.  Things I really enjoy doing, I'm not able to do anymore.  I can't bake, because I don't have enough energy.  Cooking dinner is a damn nightmare, because the heat from the stove and oven make my eyes feel like they are on fire.  I can't go for a walk because the prednisone has given my wobbly legs.  There really isn't a lot I can do these days. Lee does the laundry, dishes, takes care of Sadie and grocery pick up.  I sit on the couch, which is molded to my butt, and it has given up under the constant pressure. I want my life back!!!

On the brighter side, I've been having some fun dipping my toe in the acting pool.  My old friend, Mary Anne, has FloreyMare Productions with The Opening Night Players, has given me a few parts in the new "Pass The Popcorn" virtual comedy.  It will be via zoom on April 2nd and 3rd, 7:00 pm. More details to follow.

One other small note, Moon Moon is thriving and is now working its way into my neck.  I'm just so damned attractive these days, but I will keep my chins up (or just one massive chin).

Peace Out Peeps,😷🙏

Update on recovery

 Hello and Happy New Year!

I'll start with good stuff.  I've been off of oxygen for a little over a week, which is awesome!  Dragging around those tubes and tanks when I went out was getting on my nerves.  I kept scaring the dog and Lee kept "accidentally" stepping on the tubing.  Hmmm!!  I have to check my oxygen quite often to make sure it doesn't drop too low and the doctor wants me to keep the machines a little while longer.  I even check in the middle of the night when I get up to pee.  Don't bother with the TMI, you know that most of you tinkle in the middle night. At least once!

This is what happened at my last virtual doctor appointment with Dr Mac.  My platelets are much better, because they were low 2 weeks earlier.  My reds are low, but they are always the last to recover from any kind of trauma.  My Jakifi (one of my anti rejection meds) was lowered because that can be responsible for the reds and my predisone was raised.  Moon Moon is back!  This CoVid screwed everything up and set me back with my GVHD.  My left eye is terrible and I have an appointment on Monday to hopefully get drops made.  I pray they work, because my eye is pretty painful.  The mouth bumps and sores kicked back in, but not as bad.  My skin is holding its own and my liver seems okay.  

I had an echo a couple weeks ago, because of my breathing and everything was normal!  Yippee!!!  My heart rate is crazy high and it was running close to 140 just walking to the bathroom so I was put on a beta blocker.  Oh boy do I feel better just from that.  My oxygen still drops if I walk around too much.  Too much meaning,  around the bedroom to get clean clothes.  It doesn't take much.  I can't wait until I'm able to go for a walk.  I actually think that day is getting closer all the time.  So this is what Dr Mac says, it's a combination of lung GVHD, low red blood cells and cocky CoVid.  He didn't say cocky, that was me.  The nurses in Boston told me that my doctor was worried sick about me when I tested positive.  He kept checking all weekend and I'm pretty sure he had off.  We've been together for 14 years, so I guess there's a bond there and we always laugh a lot after the important business has been discussed.  He also always checks on Lee.

I will tell the tale of what I went through with the blasted Vid soon.  I thought I should give an update first.  I didn't realize it had been so long since my last post, but I've been watching TV and taking a load of meds.

Peace out Peeps!

Sadie doing the husky curl!