Today is the last day of my chemo cycles, but next week I get my bone strengthening infusions with Zometa. The conversation between my oncologist Dr. Ali (picture a lovely Indian Hindi accent speaking to me) and myself: (After some chitchat about my ER visit on Saturday, and the strange feeling that I could not breathe and the tests all came out fine… I felt like I was having a heart attack or asthma attack, but not quite… it was bizarre… Once I got the oxygen, I was better after a couple of hours. We are wondering if there is some air quality issues in my house causing me to feel winded… do not really know right now.) I said; “Dr. can you tell me ANYTHING about this treatment? Is there a reason the blood tests do not show a lot of changes? Should they not be changing a lot?”
Dr. Ali says… “He said, these are just standard blood tests, you must Please be patient, everything will come in its own time.” I said, “Look doctor., I have three girls, I live alone, I do not live near family because I am dealing with a divorce and custody battle, and I do not have full time adult caregivers on standby… I understand the need for patience, but I also have the reality of our situation, and need to know what to do. Like, what is your opinin as to whether this treatment working or not?” He said, “I cannot give you a yes or no answer to that question without a bone marrow biopsy, all I have are your blood tests, and all that measures is how well your body is handling the treatment and your overall health, not the growth or the remission of the myeloma cells.” So I said, “Will Dr. Vij be able to answer questions about my particular myeloma? Will he be able to tell me his estimation as to how all this is going to play out and give me some sort of a timeframe I can work with?” He said, “Yes, but we need the biopsy because without it, we will not know anything substantial” I said, “So I have to wait until May 7, go there for lab tests even though my nurse says they are ‘not’ giving me biopsy yet?”
He says, “He HAS to do a biopsy, there is no reason for me to do one here, and have you get there, and he will want different tests run and do another one.” So I said, “So you are saying I will have to ‘wait’ for these new blood tests, and possibly get a bone marrow biopsy, and WAIT for several more weeks for results… just so I can find out IF this chemo is working?” He said, “Yes, that is what I am saying, and you have to be patient; Dr. Vij and I both want a cure and we both want you in remission, and he will find out exactly how you are doing and we will come up with a plan from there.” I said… “Waiting… that is my FAVORITE thing…” He said, “I do not think so… it seems quite the opposite.” I said,”That was sarcasm obviously, all this waiting is what is stressing me out the most...” He said… “I need you to Breathe, it will be ok, you have been doing very well so far, there is no reason that this treatment is not working, we are going to plan for the stem cell transplant some time soon, and it will probably be sooner than you think, but I just cannot tell you for sure anything right now.” I said… “Ok Dr. Ali… I will practice breathing again… I will try to be patient, obviously there is absolutely NOTHING I can do to speed any of this up…” He said… “No, there is not. Everything is going to be ok, I will see you next week.”
So, I know just as much today as I knew yesterday, and my level of persistance in trying to get answers really only serves to probably annoy my sweet little Hindi doctor. He is only 42 years old, and I am always so full of steroids on Mondays, which means my questions and speech are on rapid fire. If I am reading him correctly, he finds me quite silly and impatient… so I definitley do not disappoint. I am determined from this point forward, which probably should have happened weeks ago, to start being much more productive.
I let these treatments get the better of me, I have not worked out, I have slept more than I was awake, and I gained weight I could not afford to gain. So I need a serious rebooting of my brain and my attitude. I have been a sad shell of the gung ho fighter that I should be, especially when I am obviously doing pretty well. I have survived a neck fracture, a spine fusion surgery, 30 days of direct radiation, and 2 months of chemo therapy, I have not lost my hair, I have not been nauseaus, and my side effects have been minimal in comparison to others in my situation. This is not something to complain about, this has to be good in the overall scheme of things… at least that is my hope. I should be living every day that I can accomplishing something, just ‘living’ … not sitting around wondering, planning, waiting, pondering, guessing, worrying… none of that has done anything for me except make me feel miserable. What good is it? I guess I was afraid to start anything for fear the doctors would say… “Ok, let’s go, it’s time, head to the hospital, time for treatment.”…
So instead of starting projects and being afraid of ‘Not Finishing’… I did NOTHING at all… so all that time is gone, wasted. I mean, yeah, I was feeling crummy, and no one blames me, or thinks I am lazy… but I have different standards for myself, and I am the one that ultimately has to live with ‘Me’ and my girls of course. I am sure they hated how much I was in bed this month, how much I did ‘not’ do around the house for them, or with them, and how unmotivated I was 80% of the time, and how every time we started a game or a movie, I had to stop to rest or head to bed… I am sure that was a total drag.
They have been handling it well, but the laziness has spread like a disease in my house, it is pretty messy (my standards), and everything that does get done by them is really not done well, so I walk around harping like an old lady and asking them to do it over again, and generally I get attitude that I am too tired to correct… or I get pouty complaining which is really fun. But overall… they have been really good kids. We are managing to get our showers, teeth brushed, we all get our homework done, the get to school on time, keep the house running, we have a clean kitchen, living, bathroom, and dining room, clean clothes, and everyone gets a meal at night, so I suppose that is a success.
But there has been not much of anything else… I mean… literally… we might get adventurous and go to the grocery store or even drive over to Rebeccas apartment and sit there… but that is the extent of life as of this past month. That is not much of a life… that is just getting by, and I feel like the kids are slipping through the cracks in some ways. I feel I am not giving enough affection, not noticing the right things in order to give praise, I am not checking up on their teachers as much, or their homework, and I am not following through with the rule enforcement consistently. So… there is that…. I did manage to type a 12 page paper this week on the five types of domestic abuse which highlighted the prevalence of ‘economic abuse’ and emphasized the importance of ‘empowerment.’ This is as well as all the other social programs that are needed to successfully break a cycle and get out of those situations permanently; I got really into that one.
Speaking of ‘economics’, I am pretty sure my case was picked up by the Legal Aid Services of Missouri, and I have an attorney, but apparently my file was so large, she is still in the process of going through it all and will be ‘calling me’? Normally I would not care, but I am starting to care ‘a little bit’. Anyway, things will work out as they always do I am sure, and I am trying not to ‘worry about things I cannot control’ and that just happens to be something at the current time that I cannot.
I am hoping to find some type of work temporary somewhere, which would definitely help bring in a little living money. I will let everyone know when I find something. Oh! I also started painting my bathroom… it actually looks pretty good… it is much harder to do those projects than I remember, but I do have a sense of accomplishment and satisfaction when I complete certain parts of it. If it were not so expensive, I would paint every room in the house… that will surely keep my mind off of everything going on… The girls have been helping, so it has been very messy, but I think it is a good skill, and I hope they are paying attention to the details… Kimberly pays better attention to home improvement projects than Courtney, but they both helped, so it made me happy. One thing about my childhood I do remember is when my dad let me help with tools, or painting… so I know they will remember the silly days we painted a tiny bathroom… So… I can say I have started a project and hope I will have it finished by tonight.
So for today my report is this… this is my last chemotherapy of this cycle. I will be on a break from the Velcade & the Revlimid for a week, and the following week I will be in Saint Louis doing an unknown number of tests, to get some results that I hope are helpful, and also I hope I do not get told a bunch of “Run Around Answers”… or I hope they do not say they will call me in a couple weeks… and to SIT TIGHT AND WAIT some more… I think any more waiting or anticipating will cause my head to explode. My personality is not built for all this. I have Cancer – whoopitydoo… that is fine. I accept that fate. I even except the fact that it is some kind of creepy cancer that has no particular correct treatment, I even accept there is no cure… I even accept that I could have anywhere from 3 to 5 years to live (but I am open to 10 years + also) … but in the mean time…. Give me something I can work with. Give me a set of tasks, a set of treatments I can undergo… something I can put on my calendar, something I can say I am ‘Doing, to fight the inevitable… or Beat the Odds… give me an opportunity to do something besides more ‘WAITING’… that is all I ask. Or just tell me that ‘no treatment’ will make a difference, and I can just keep with the diet changes, the environmental changes, and maintain a healthy activity level and try live out of ‘whatever’ time I have left, without all the wondering…
I was doing that before the neck fracture. I did not know I had cancer, I was working, going to school, I was doing things and I was not slowed down and that was with a bad diet, I would probably be a whole lot better with all the life changes I have already made. I know I would have gotten sick eventually, just like anyone else… but I would not be ‘anticipating’ sickness because of a bunch of chemo meds, or wondering about surviving a transplant, or coming back to a house after a transplant wondering if the house is clean enough, or if my kids can handle seeing me that way…. I just want to find something I can do with my time, with my girls… something. Wow… that was a rambling tyraid… I apologize for that…
I think I apologize, it seems like terrible writing, so I am sure the reading is not easy to get through. I am bored… and kind of sad this is my last chemo, because that was the only constant in my week. My nurse Molly is so sweet, and she does not mind my 10 minute rambling steroid sessions before she hooks me up to the machine, and I plug in my headphones… It is an activity that I now need to replace with something else… right now it involves writing, watching movies or television shows… not the most productive use of a human beings time… especially a human being with a more limited time on the planet right? Haha I hope everyone is having a good week. My plan is to “Intentionally be as positive as I can, to take charge of my thoughts a little better, and take charge of this body and drag it out whether I feel like going out or not.” If I do not, then I will continue slipping into a funk that I do not want, and no one wants to be around some cancer patient in a depressing funk… I know I would not. Oh… we tried on the wigs, the girls said the hair looks too shiny and perfect, so it does not look like me. I am going to take that as a compliment that I am ‘not fake looking?’…. lol If I wear a wig down the road, I will have to wear a hat, otherwise it just will not look natural. I do hope that all the rest of the hair on my body goes away with the chemo… that will be something along with the weight loss that I am looking forward too. Just… please God, let me keep my eyelashes and eyebrows… I am not someone that has EVER drawn eyebrows… I am pretty sure that it will not matter if I know how to draw or not…. I seriously lack those girly make up skills… If I could just keep my eyebrows… everyone make sure to add that to the prayer list. Thanks.