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 a positive legacy of strength and hope. I was so out of the loop that I missed her relapse saddens me. Fragile… Usually I can motivate myself at least to ‘talk’ to people, but lately it has been difficult. I use the word bizarre these days to describe my life and how I feel on any given day. I am now thinking of a different word to cover it… maybe ludicrous, outlandish? Absurd?
I am alive. I still have a head full of hair. Very mysterious painful bruises on the upper middle of my back for weeks. Got x-rays, but they saw nothing but buldging discs and hardware. I think of nothing to do around the house that would account for them… I wonder if maybe a cat (ILady Tubbington) jumped on me while I slept 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… AWFUL, but Rebecca and Colleen said… it’s ‘not that bad’… I love them both… but I see it in the mirror… even in sun… and my 8 year old PETs my face… so I know… it is THAT bad… lol
The doctor says it is hormones, 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 want to wax my entire face and when I start chemotherapy again… it will go away anyway. In a few months… if it is not gone, I am going to find a way. All I think is ‘thank God I am single… These sorts of things are listed as ‘possible’ side effects to Revlimid, Velcade, & Dexamethasone, so there ya go…..
I did notice that I lost a section of eyelashes on my left eye tonight, right where I had a pesky sty… 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… 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 puffy and red for months now… I thought maybe they were getting better…. guess not.
I do not recommend ingesting toxic meds… 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, 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 amplified all symptoms and my ‘derriere’ since the first fracture and surgery in October 2012 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 used produce methamphetamine or at least lots of using it happened down in there in the past.
So… why do I suspect a meth lab? Well, I did some research.. Plus I was cleaning down in the basement, and moving things around… oh yeah, my Washing Machine decided to Break… and filled with water but no drain… I had to do too much physical activity, but I needed clean laundry. (I now have a broken deep freezer, broken washer, and unusable dryer in my basement… basically a Thrift Shop) I was supposed to call and get it picked up a while ago… anyway… It took some work, but while down there, I noticed duct work still leaking cold air badly. the guy never taped the stuff up. I took pictures because I had a tenants rights case.
As I looked, I noticed a LOT of random outlets and light fixtures all over the place, no reason. Upstairs we have multiple problems with electrical outlets, and things just do not work up there, so why are there so many connections overhead? Rows of cut off water hoses, there was a room in there, with a huge vent hole going up above ground, with yellow film on walls covered by some purple paint, not covered entirely… random brush strokes as if it was to cover something … Then I found little storage spaces built into the ceiling/floor, and one of them had about 30 empty boxes of pseudoephedrine inside… possible use for unsavory-ness.
The neighbor described an episode of “Breaking Bad”… sooooooo If we did not have enough problems… I get to hope and pray that the toxicity in the house has not done anything to us. 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 strangeness to investigate. I have read, even if the house was cleaned, the chemicals still remain…
Anyway… moving on. I have been a little frustrated and down. ‘relaxing’ is more difficult these days. I wonder if I try to get out of this lease, put my things in storage, send my girls to stay with different family members for the summer? Then check in the hospital and not worry about finances in running an old, broken house. I figure maybe the girls could actually really enjoy the summer, someplace else… like little foreign exchange students staying with aunts and uncles. Maybe that would be fun, and distracting for them… I need to be thinking, and someone will be help me come up with a plan that works. The girls told me that I have been crabbier and it stresses them out because they worry.
Another reason for my frustration is 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…
I am trying to expect too much and things may not happen the way I want. I kind of depend on that money to pay bills.. I realize not a long-term plan… but it would hold me over until the legalities cleared up. 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 a steady income. With knowledge that everything will work out with the transplant and I will be back in a couple of months. I know I am complaining… Sorry.
I did got a new attorney, a sharp guy with experience in my type of family law cases. He was 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 would be compensated via my disability if you can believe that! obviously 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… I either learn to ACCEPT this reality… or I go bonkers. Dealers choice… let it go…. or LET IT ALL GO…haha
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. Each day I get a growth factor, and the 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.