I will have to back post for the last three years as some point, but after bring on a clinical trial for 45 months here is my lastest update...
Once again, I am doing Déjà vu as I sit and wait while the radioactive isotopes course through my veins and are absorbed by my bones to see where my bone metastases are at. I’ve been here since 8 am and have a little over an hour to wait for the actual scan. Then it’s up for labs and then wait until all my results are in and until I can get into see my oncologist. Basically, it’s an all-day affair.
Beyond the fullness of today, there was the waiting for today and wondering what it will show. Will it be nothing new and I just continue as before: the shoe still hanging precariously over my head. Or will it be the news I expect to hear after every scan and have gotten a few times on this journey, that the cancer has found a way to defeat the present treatment and we need to look for something else. One day I know I`ll hear that I`ve exhausted all known treatments and the next step is Hospice. That is when the shoes disappear.
Living under a cloud of shoes is something I don` think I`ll ever get used to. Uncertainty constantly by my side, even though I know no one is ever guaranteed what their future will be, but when you have cancer living in your body, it seems that your guarantee is that you will die sooner than later. Then to add to the mix is another health issue that causes health issues. There are many people dealing with diabetes, having to watch their carbs and balance their proteins and increase their vegetable fiber intake. But with a dairy and gluten intolerance it makes things that much harder. I admit that I am a carb lover, especially when stressed, and I`ve been really stressed lately so I seem to hit a wall whenever I try to figure out what I can eat. Which of course stresses me out even more. With that the higher than good blood sugar in my system may be affecting my heart indicating a need for another scan coming up in a couple of days. All I need with all my worry about cancer killing me is to die of heart disease first!
I was eventually called back for the bone scan. In my head I was going to be assertive as I always think I am but never do and ask them to turn the monitor towards me, so I can see as the bone scan images show up. I didn’t. No big deal, I’d be getting the results in just a couple of hours. As soon as I got positioned and the overhead plate was lowered just a few inches above my nose, my ear started to itch something awful. I mean one of those itches that almost hurts. I tried to focus my attention away from my ear and decided to think about what things in my life I really loved to do. Not who I loved, that was easy, but what activities, what interests. My first thought went to riding my bicycle as a kid. I remember the feeling of freedom, of expertise as I could ride for blocks and blocks without ever touching the handle bars. I remembered the wind in my face, the feeling that I was being held up by the wind, of almost flying. As the ear itch managed a break though I remembered how I never really truly took advantage of my freedom and my expertise. I never ventured far from home, sometimes knowing what boundaries were set by my parents and sometimes just plain feeling like they wouldn’t like it if I went any farther. I don’t know if my fear was of danger or of my parents’ disapproval. I didn’t fear their anger, I feared their disappointment, a much harsher type of punishment in my mind. When I was older and could have really been without boundaries, I didn’t push myself to bring my riding to a higher scale. At that time, it was a challenge to ride a bicycle the 30 miles from town to the beach. The road crosses many miles of marsh with no houses or stopping points along the way. This was way before even the idea of cell phones, just Dick Tracy’s wrist watch phone in the comic books, so getting stuck in the middle of nowhere stopped me from even trying to see if I had the ability to try my legs at extreme biking. Plus, I had my driver’s license by then and if I wanted to go to the beach the car seemed like the better alternative. Practicality verses testing my limits, I think the scales were stacked.
As the itch got more intense I went back to trying to come up with activities I used to love. Fishing was one, but that usually entailed getting up early in the morning which was never my favorite, and cleaning and gutting fish gave me a mild case of the willies. I could do it, but it made my skin crawl as the scales flew off and landed on my bare arms.
Playing in the sand dunes, not a federally protected entity at the time, was a fun time, unless you got a cockspur stuck in your bare foot. I loved the beach, but wasn’t a sun bather, surfer or walker, so not a real passion.
I thought I loved camping, which I had only done at summer camp. Walking to the camp site carrying my big, heavy sleeping bag in my arms (no back packs) was always uncomfortable and I was never any good at peeing in the woods and not getting my shoes or pants a little wet.
Itch itch. College, didn’t I enjoy dorm life? Except for having to share one room with three other girls I barely knew, it was good. I liked that I could just go down the hall and drop in on some friends and visit. Or that hanging out in the hallway at 3 am there was always another person to hang with. I went to a college in the middle of New York City so a campus we didn’t have. I’m sure I would have loved some self-contained community with fun things to do and a busy quad would have been nice. Itch.
Wasn’t there something I was passionate about? Reading, but books ended. Music but it was the lyrics that attracted me as my sense of tone and rhythm were severely lacking. Itch. I loved when my children were babies, but did not suffer lack of sleep well, and they both grew up on me. Itch. itch.
I began to feel the reality of the bone scan and was reliving the past sixteen years of living with cancer. The x-rays, scans and biopsies. Having to hold still on a hard, narrow table, trying to hold my breath and at times feeling like I was going to burst. What would this one show? What will my new new normal be? All questions now swirling around. Been there, done that, but the anxiety never diminishes. Itch itch itch.
Finally done and time to go up to the lab, have my blood drawn and then wait to see the doctor. I was tired, having been there since 8 am and it was now closing in on 2:30 pm. Doug was waiting for me by the lab. I had sent him home this morning, I didn’t need for him to sit around for hours with me. They called my name. I sat in the chair while they prepared to stick a fang-like needle into the port that had been inserted under the skin of my chest nine years ago. Needle inserted, tubes attached and dark red blood collecting in them. Port is de-accessed, band-aide applied, and I’m good to go wait some more.
After a moderate wait, I hear my name being called. I am asked to step on the scale that I “know for sure” lies, or my clothes weight a good nine pounds I declare. Once in a room they prepare to take my Blood Pressure, “use the fat cuff please” I always tell them as the regular cuffs pops off most of the time. I’m an old hat at this! I answer the same questions I get asked every time I come in, name and birthday. Any medication changes since last time? Am I in any pain? On a scale of 1 to 10 how would you rate it? How do I know how to rate it? I feel it but am not jumping out of my skin, four is always an easy answer unless indeed I feel like I am about to jump out of my skin. “Ok, the doctor will be in here soon.”
No, she won’t. The schedule gives her fifteen minutes with each patient. For us old timers who basically just see her to review how we’ve been doing and the results of our latest tests say that we are holding steady and our treatment should also, 15 minutes is enough. However, for anyone just coming in and getting the first confirmation that they indeed have cancer, 15 minutes barely gets them past the shock of hearing those words. From my own experience with this doctor, and I suspect other consciences and caring physicians, they will sit and answer any and all questions the patient has. She will explain the diagnosis thoroughly and go over the treatment options and outcome possibilities. Calmly, openly and caringly she sits while the tears flow, while the many questions are asked and while the enormity of the diagnosis sets in. Only when the patient and friend or family member are ready to go off and contemplate what all they have just heard does she leave the room. Every patient deserves no less. So, it is always the case that she runs behind schedule. Even so, when she enters my room she is fully there, ready to engage in my case and give me her undivided attention. She may have little to report and after the usual exam she wishes me well and she goes off to the next patient. Sometimes, like today she reads the report to me, interprets what the finding are and assures me that this isn’t anything dramatic, but probably time to find a new treatment. There are new clinical trials, reusing old treatments sometime become effective again, even switching to cousin drugs of the ones I had been on might work. Even some counter intuitive uses of hormonal treatments have shown to be effective.
When she asked me what I think I would like to do, I say I’ll do what she thinks is best, “you are the doctor” “yes I am” she repeats in a joking manor “but in reality, it is up to you. I will give you all the facts and make a recommendation, but I need your input.” I’m not sure if that makes me feel empowered, or scared. She printed out some information on the treatments and agree that we needed to see the results of the echo cardiogram I was having later in the week. We’ll meet again next week and decide.
Eight hours after I walked into the hospital that morning we are finally walking to our car. I am exhausted and want nothing more than to go home and veg in front of the TV. I didn’t want to talk to anyone or think about anything.
Of course, that is when my daughter calls to say that there is a problem with her hot water heater and some other issues. I’m so tired, but I’m still a mom and still have the real world in addition to my cancer world. There are still commitments I made to other people to get done, a house that needs attention as well as pets and my beloved husband. With both of us having serious health issues, it is the blind leading the blind most of the time, but we somehow manage to time our crisis, so they don’t seem to fall at the same exact moment, most of the time. Maybe it’s sure will power that the lesser in crisis holds off a full-blown breakdown, or a sort of magical balancing act, but we make it work.
Decisions decisions. Although I do have the support of a great medical team, and a loving husband, in reality I’m in this all alone. Do I opt to stay the same course since I know the devil I live with and hope the progression stays slow and poky. Or do I try something news, not only not knowing how it will work, but dealing with a new routine, new side effects and a new normal. Or, do I just stop it all. That is the choice no one wants me to make, and I know might be the coward’s way out, but with that I can focus on quality of life and have more of an idea how this will run its course. But it’s also a decision I can’t really bounce off anyone as I know that they would be very disappointed by it. I dare not say it to Doug, as he always feels like there is hope and we have an unspoken competition to be the first one to die. This sticks in my head when other noises aren’t distracting it. It messes with my emotions and internal stamina. I look like I’m simply depressed, but there is nothing simple about depression and this situation in particular.
I also have to consider my heart issues. If I have heart health issues they may determine what treatments I am ineligible for anyway. Or maybe my heart symptoms are simply a result of the stress I’m stirring in myself right now with my other issues.
When I return the next week, I am presented with only two treatment options: The old standby Tamoxifen, which I was on right after my mastectomies in 2003, or, they want to put me ON estrogen. Yep, after literally starving my body of any and all estrogen for the past 16 years, they want to put it back into my system. Uh, and how does this work? Well, the analogy is that if you take a starving man and force feed him a whole turkey dinner he will die, possibly explode. My cancer cells, having been starved of estrogen are now so sensitive that even a little estrogen will cause them to die. Hum, well ok. We decided to try the estrogen treatment first and use the Tamoxifen as a backup.
So how is my body reacting to a semi-premenopausal state? The hot flashes have increased. I’ve had aches and pains all over my body but I’m not sure I can blame it on the estrogen, I feel like crap, but maybe that will get better, or not. My blood pressure is better, but my blood sugar has not been, I don’t think it’s time to make a judgement call yet, I want to wait and see how the symptoms progress. But I’m not happy and neither is my body. But none of this stops me from railing on our community social network about the HOAs plan to kill our beavers, or plow down trees to put in a sewer line. I add my two cents of wisdom (worth all of those two cents) about kids acting up in the neighborhood and how adults need to enforce boundaries, so the kids can learn what is and is not appropriate. However, it seems that some parents aren’t up to adulting themselves… I’m not always appreciated for my insights, but that never stops me. Maybe when the shoes have disappeared and before I’m wheeled out feet first will I let go of the yesterdays, forgo the maybes, and give up my hope that I can do some tiny bit of good that will live on after me. This will be my time, time to focuses on those I love the most, time to say my good-byes and “I love you’s,” time to simply be. Unless I am unable to scratch my itches, then I’ll be pissed.
