Second Auto Transplant – Day October 15, 2013 – Siteman Cancer Center, Barnes Jewish Hospital, Missouri. Dr. Ravi Vij
Hello Everyone! Completed day 2 of my mephalan & dexamethosone chemotherapy cocktail. Tomorrow will be stem cell transplant day. October 17th will be my newest re-birth day and hopefully the last one I will ever need. I am not having any migraines yet, not heavily medicated, my anxiety level is low, I have different nurses & doctors this time around, but everything seems about the same. I brought books & art supplies this time, the hope is I can create something, which would give me something to show for all this alone time. Residing at Barnes (haha) has its perks, ie: not having to cook meals, unlimited ice water, chocolate ensures, auto adjustable bed (it shifts all night long to adjust to my movements) & unlimited wi-fi…. but at times it can feel like a very sanitary prison with a creamed corn or tomato soup air freshener. lol Fortunately I get to use the art room downstairs whenever I want to escape, as well as the exercise room… I really want to lose some of this weight and get stronger, but they are giving me steroids again… ugh! I figure I will whine & obsess over it, & work out anyway… worst thing that could happen is all the endorphines will make me a cheerier hairless chubby girl with muscles. Hahaha
Anyway, I am hopeful about this transplant. The first one did its job, but I was disappointed. I knew chances of remission were small because the chemo did not work before & my myeloma is harder to treat. I prefer to have this heavy hitting chemo over a short day period, than chemo over months & months, because when this chemo washes out of my system… I get at least 3 months of clean & free living… After this, they will put me on a very low-grade chemo for about 3 years, or they find a cure… That is the goal of all this body-punishment. Knocking the myeloma back, so it does not create more tumors or deteriorate more bones anywhere else. Chemo, although it kills cancer, brings with it lots of nasty little side effects. For me… a person that already had issues with memory the older I got, the worst thing is the residual ‘chemo brain’ … I used to laugh at it, but now it worries me a little because when this is over, I am praying that I can go back to work at least on some level, & do not want it to affect my productivity.
I have gotten to the point where I have to write everything down & set alarms in my phone for EVERYTHING… if I forget to do that… it is like whatever my kids tell me was never said. I journal a lot of things, like conversation details, just so I can recall them later. Pretty sad… haha I can remember things in the past, or movie lines, or song lyrics… but tell me a phone number, or your name… 9 times out of 10 I will immediately forget it. I also have nueropathy in my hands and legs… the legs are not too bad, just besides the overall weakness, there’s a creepy electric shock-feeling when I walk… but my hands are something entirely different. They are weak and I have difficulty grasping things tightly or holding onto things. I drop things ALLLL the time… and you can ask my family or my friends who served with me in the military; I already had a tendency to trip and fall and drop things before all of this… so radiation and cancer treatments seemed to magnify my flaws as if I got anti-superpowers. I do have a lot on my mind. Strangely, the cancer is not the center of my worries any more. I have put it in a place where I fully recognize I have no control over it. I can change my diet, my activity level, my thoughts about it, who I allow in my life, & attempt to stay in the best treatment plan… but that is all I can do. I literally have put it in Gods hands, & I do my best to live and walk in my faith, when honestly I do not understand it.
However, the divorce process is a whole other thing. Still hoping it will come to some kind of resolution, and the temporary support order will be enacted. The father knows I have cancer, knows I am in treatment, and knows we are not in our own home… Yet it changed nothing because the orders are coming from an attorney and not me. When I did call him as requested, the conversation was my being told exactly what the stipulations would be, and it required that I tell the court that I did NOT want child support or maintenance, and I would agree to call him and ‘ask’ for money on an ‘as needed’ basis for the rest of the childrens lives. Only with that agreement, would he agree to a divorce giving me full custody… F YI, there are actually laws that are in place to prevent this kind of thing, but not in my case.
My worries have to do with my girls and their futures. I have been separated from my spouse almost 2 years, and we stopped getting any small amount of financial support over a year ago. This would not be an issue, if a year ago I had not gotten the neck fracture, got cancer, started treatments, and had to quit working temporarily. Who knows if the best doctors available to treat me will even be taking whatever crazy insurance our country has in the future. I am depending on the kindness of friends just to keep us together while I am in the hospital, and I will even need help when I get out. I do my part to contribute wherever I can, and my having these ‘feelings’ are not intended to be ‘prideful in the wrong way either’…. I am human and I get frustrated with life at times, even when I feel most of what I go through happens for a reason (sometimes I know things happen for no reason, they just ‘happen’). I feel that when this is over, for my own peace of mind and sanity; I need a game plan for how I am going to move beyond this situation so I can enjoy my life more fully and so can my children. In the beginning, I was hopeful for just a minimum amount of financial support… at this point, I would settle for anything, but my attorney says these things take time.
Anything would add to my disability payments, because at least then, I could afford a place of our own. I have the option to go back to school when this is over, but all I am doing is accumulating more student loan debts just to pay bills. It seems so very pointless and avoidable. This situation is precisely why people do not get divorced in abusive situations, because there is so much more involved with children… Anyway, it has been said my girls will see this as an adventure, and we should be grateful we have friends willing to help us, and my wanting a place of my own is by no means saying I am not grateful for the kindness of friends. I am eternally grateful for everyone that has offered through this entire journey. I moved my children on the promise of a safe haven, our own healing space, to finally decorate our own rooms, start collecting special things without fear that they would be sold or given away, and that I could take care of them… and… I basically I renigged on those promises. Without these necessities, how can I can train them to be the strong young ladies they will need to be in this harsh world.