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!!!