5.28.2013 – No control

Wow, it has been a little bit since I have updated this. I suspect it was the chemo cocktail  this month. The only thing about the Dexamethasone I miss is that burst of energy I would get for 3 days, So many thoughts. haha So much happened in my friends and families lives, but I was not an active part of it. On the 13th, a friend passed away after fighting (ductal carcinoma) which is supposed to be a ‘treatable’ form of breast cancer at age 33. What surprised me was we were corresponding over a month or two ago, and I had no idea that things had taken a turn for the worse… Even her blogs said they were confident that the double mastectomy had gotten all the cancer, but what I am learning about cancer is the younger you are, the more aggressive it can be.

She was an amazing human being, mother, wife and friend, and as far as Christians go, she left quite a positive legacy of strength and hope to include myself. The fact that I was so out of the loop with everyone that I missed the fact that she had relapsed makes me sad and reminded me of how fragile life is… Usually I can motivate myself at least to ‘talk’ about any number of things, but lately it has been especially difficult. I have been using the word bizarre quite a bit these days to describe my life and how I feel on any given day. I am now thinking of a different word because bizarre does not quite cover it… maybe ludicrous or outlandish? Absurd? I do not really know… it is what it is I guess.

I am alive, I have no new broken bones, and I still have a head full of hair. I do have a very mysterious couple of painful bruises on the upper middle of my back that I have had for weeks. I did get x-rays, but they did not see anything besides all my spine hardware. I cannot think of anything that I could have done around the house that would account for them… I am starting to wonder if maybe our cat (I call her Lady Tubbington) jumped on my back while I slept and I just slept right through it? I have a hand shaped bruise on my left wrist, and a couple new ones on my legs… I even started getting creepy blonde facial hair… I think it is AWFUL, but Rebecca and Colleen have said… it’s ‘not that bad’… I love them both… but I have seen it in the mirror… even in the sun… and my 8 year old even PETs my face… so I know… it is THAT bad… lol

The doctor says it is some hormone thing, a side effect of the Dexamethasone steroid where it gives you testosterone or something?… and that it would get better when I stopped taking it. I personally want to wax my entire face, but everyone says that it will only make it worse… and when I start chemotherapy again… it should all go away anyway. When this is all over in a few months… if it is not gone, I am going to find a way to get rid of it… All I can think of is ‘thank God I am single… in fact, this could be what is repelling the opposite sex, making my life easier… haha”. These sorts of things are listed as ‘possible’ side effects to Revlimid, Velcade, & Dexamethasone, so there ya go…. The back bruises are the most bothersome because they are painful.

I did notice that I lost a section of eyelashes on my left eye tonight, right where I have had a pesky sty for the last month… I guess the stye won the battle against my eyelid… though I tried to fight it with antibiotics and drops for weeks. Every week I had a total of three different styes on different parts of my eyes… each Tuesday they would seemingly clear up with the steroids, only to return on the following Thursday… just BIZARRE… Yesterday, Kim came to hug and kiss me good morning… she said; “Mom, your eyes look really red… I mean… not ‘bad’… but puffy…. but you are still pretty mommy, it’s ok”… lol My eyes have been perpetually irritated, dry, puffy and red for months now… I just thought maybe they were getting better…. guess not.

Anyway, I do not recommend ingesting toxic medications… they have undesirable effects on the human body. I finished my last round of chemo a little over a week ago and now the time has come to go and donate those life saving stem cells. I really wish I would have done a better job the last couple of months taking care of my body, but I confess that I did not. I did fine with my eating habits, but the last weeks I found myself eating ice cream again… the sugar I am sure, did not help me any in the weight department… the steroids enhanced everything on my body it seems… or ‘amplified’ might be a better description of my ‘derriere’ since the first fracture and surgery in October when I started my first round of steroids that were not even related to my diagnosis at the time.

Here is a funny story about my house to add to the rest… I now suspect my basement was either used to produce methamphetamine or at the very least lots of using was happening down in there at some time or another. I went through a site that had things that needed to be checked…

So… why do I suspect the meth lab? Well, I did some research, and I have ordered a kit to test your home for harmful chemicals, hopefully I will be getting it within the week. Anyway, I was cleaning down in the basement, and moving things around because… oh yeah, my Washing Machine decided to Stop Spinning… and just filled with water and would not drain… I had to do some physical activity that my friends will not approve of, but I needed my clean laundry. I happen to have an extra washer because a friend donated a set to me when we moved in because my dryer was gas, and my house did not support that. (I now have a broken deep freezer, broken washer, and unusable dryer in my basement… basically I have a Thrift Shop down there) I was supposed to call and have it picked up a couple of months ago… anyway… I had to move the broken washer and slide the working washer in its place, and transfer the load… It took some work, but while I was down there, I noticed the duct work was still leaking cold air pretty badly because the guy never taped the stuff up. I went around and started taking pictures because I am making a case in case I have to get out of my lease.

As I went around taking pictures, I noticed several bizarre things in my basement, there were a LOT of random outlets and light fixtures all over the place, just no rhyme or reason. Upstairs we have multiple problems with electrical outlets, and things just do not work up there, so why are there so many outlets in the basement? There were multiple cut off water hoses, there is even a little room in there, that has a huge vent hole going up to the surface, and yellow film on the walls covered by some purple paint, but not covered entirely… just random brush strokes of paint as if it was to cover the walls… Then I found little storage spaces built into the ceiling/floor, and one of them had about 30 empty boxes of pseudoephedrine inside… Anyway… there are other things… well… Let us just say, chances are very high that this house was used for some unsavory activity.

I went to the neighbor and asked her who used to live here and she described to me pretty much everything I was ‘hoping not to hear’… or an episode of “Breaking Bad”… sooooooo As if I do not have enough problems… I get to hope and pray that the toxicity in my house has not done anything to me or the girls. I went to the ER a couple of weeks ago for breathing issues and extreme fatigue, but all tests showed me as normal… and I generally feel better when I am not in the house.   For the most part we are all ok… just some strange things I have to investigate. If there was anything, it does not look too obvious, but from what I have read, even if the house was cleaned, the chemicals still remain…

Anyway… moving on. So, I have been a little frustrated and down.  As you can see there are several things that make ‘relaxing’ more difficult these days. I am starting to wonder if I should try to get out of this lease, put all of my things in storage, send my girls to stay with different family members for the summer, and just check in the hospital so I will not have to worry about the finances of running the house, or the fact that things keep breaking. I figure if I split the girls up, they would actually really enjoy the summer, because they will be like little foreign exchange students staying with aunts and uncles that they have always wanted to get to know and it would be really fun, and really distracting for them, and a lot less expensive than asking a relative to take on all 3 girls at the same time… I just need to do some thinking, and hopefully someone will be able to help me come up with a plan that works because my stress level is rising, and it makes everything worse… even the girls have told me that I have been crabbier than ever and I think it stresses them out because they are worried about me.

Another reason for my frustration is related to the fact that I filed for divorce back in February 2012…  As of last night I was notified that my financial aid has been suspended due to my taking a lighter course load, and having to withdraw from multiple classes last October because of my health and hospital visits. It is reported as a ‘failure to progress as required’ for my degree program. I have 9 months of my GI Bill left to use, so I really need to crack down and complete these required classes… Obviously I am trying to do too much and things may not happen the way I want. I kind of depend on that money to pay bills.. which I realize was not supposed to be a long-term plan… but I thought it would hold me over until the legalities cleared up with the divorce. I am on the look out for virtual or stay at home jobs that I can do in order to make some income, but I am told the moment I start bringing in even the smallest amount through a job, the sooner my current benefits will lower… which I guess would be ok if I knew I could count on employment as a steady income.  With knowledge that everything will work out with the transplant and I will be up and running again within a couple of months. I know I am complaining… I apologize.

I did get a new attorney, he is a really sharp guy with lots of experience in my type of family law cases. He was very honest and blunt when he told me that because we are still not divorced, if anything were to happen to me, the girls will have no other option but to go live with him… in fact he could actually be compensated via my disability if you can believe that! Ugh… So obviously this is not an ideal situation. What I am reminded of on a constant basis, ever since my diagnosis back in December is… I have absolutely no control and NO CLUE what is going to happen next… and for some reason either I learn how to ACCEPT this reality… or I am going to go completely bonkers. It’s my choice… let it go…. or LET IT ALL GO…haha Anyway, Colleen is driving me to STL on Thursday, May 30. I will begin my pretesting for the clinical trial, my bone marrow biopsy, skeletal survey, EKG, and a host of other tests before I begin my first growth factor injection on Friday morning. Each day I will get a growth factor, and this Mozobil injection, and on Monday I get the Central Line placed in my chest, and they will start harvesting the stem cells. I will be there until June 7th, unless they collect all the cells on Monday… then I will get to go home early. I get to stay home a week, then it is back to STL again for the transplant. I will put that process in the next blog in case anyone wants to know, or you can go to the links somewhere on my WordPress homepage.