10-28-2020
I needed to sit with myself for a time, without writing, and take in where I am right now, and it’s often inflexible when the feelings are so mixed in my mind and I’m trying to be quiet to find the purpose or the meaning for my life as I breathe in one breath at a time and exhale slowly.
Adding to my dilemma is that I’m three weeks into the new drug that is supposed to kill the estragon that is feeding the type of cancer I have. It’s makes one go through menopause, and in my case, again!
So, if the universe is always right, did I then need some lessons from hot flashes and night sweats that I didn’t learn before, or is it something deeper? Maybe it’s accepting the aging process, looking at mortality and life changes that are not always predicable, or the message is to slow down and allow the progression to happen, but with mindfulness this time.
I never grieved the loss of that part of my life, and looking back now, that might be the answer for me today—that I need to grieve my youth, my growing older, and to allow the flood of emotions to consume me for a time; something I’ve never been good at.
Loss comes in many forms—divorce, empty nest, people or pets dying, moving, breast cancer and even menopause—all have points of loss and grief, but I was taught from an early age to not give into those emotions, don’t talk about things that might cause embarrassment for the family or myself, and be strong.
It’s one of the reasons, I’m sure, that I hate the whole “You are a warrior,” that is so often used with breast cancer. I’m not. I’m scared. I’m angry. I’m sad. I’m disappointed that I’m not just “breezing” through this like many claim to do.
I’m just not, and I don’t want to be any kind of warrior, I just want this to be over and to know that for all the discomfort that comes with chemo, and now with the rest of the treatment that will continue for the next 7 months, along with the hormone-crashing drug that will continue for the next 5-10 years, that the cancer will be gone for good, but even that is not knowable.
I met with Ellie, the PA again yesterday, and asked why mental health is not a part of the treatment plan for breast cancer? I also asked why physical therapy is not a standard part of cancer treatment, since so many of the side effects are things like loss of feeling in the hands and feet, or joint pain?
I know that it’s tough to have someone old enough to be their grandmother asking hard questions about cancer treatments, rather than just accepting what the doctors say, and I watched Ellie’s body language as she folded her arms tightly across her chest and leaned away from me, as she sought answers to my questions.
The subject of PT for oncology patients came up when I talked to a friend and college of mine, Jen Biglin, about my neuropathy in my hands and feet. Jen had a friend die from colon cancer recently, and her friend told her about the use of PT for cancer and how it should be part of the process to starve off more cancer and to build stronger bones that really take a hit with the different treatments. Jen gave me this link to an article by the therapist that worked with her friend: https://www.seattletimes.com/opinion/how-exercise-physical-therapy-help-in-the-fight-against-cancer/?utm_source=email&utm_medium=email&utm_campaign=article_inset_1.1
Yes, when you read this piece, it makes sense, and my query came from this article. I sent it to Ellie to read, and she said she would suggest that both mental health and physical therapy be part of the cancer protocol. At least she was willing to look at the article and pass along some information. Should there be any question that having cancer, of any sort, has some mental consequences? Breast cancer, specifically, has so many female-connected doubts and concerns, like what did I do wrong to get this? Will I be okay? Am I still desirable to my partner, or even to myself? Will I die? When will I feel normal again? Why am I so angry, sad, depressed, manic or just plain emotional? Am I cancer free or are there cells waiting to take over as soon as I stop all the medications that I have to have to “kill” the cancer cells? This is likely one of my favorite support websites, The Mighty, and this article is so important to understand for anyone going through long-term health issues, and I have a feeling that that with Covid19, this will be important to understand for individuals, friends and family affected in one way or another by the virus.
There is no physical health without mental health: https://themighty.com/2020/10/mental-health-is-physical-health/?utm_source=newsletter_mental_health&utm_medium=email&utm_campaign=newsletter_mental_health_2020-10-29&%24deep_link=true&%243p=e_cordial&%24original_url=https%3A%2F%2Fthemighty.com%2F2020%2F10%2Fmental-health-is-physical-health%2F%3Futm_source%3Dnewsletter_mental_health%26utm_medium%3Demail%26utm_campaign%3Dnewsletter_mental_health_2020-10-29%26%24deep_link%3Dtrue&_branch_match_id=733365627633557376 My immune system remains strong, thank goodness, and when I asked Ellie if I could go to a bar at this point, I thought I would get the, “Well, that is not the best idea for your health/condition,” but instead, I got a resounding, “Yes,” as long as you take all the recommended precautions of wearing a mask, distance, hand washing, etc. It’s not that I want to go to a bar, but I thought that was like the worst case situation with Covid19 right now, I didn’t feel like, “Your immune system is handling all of this very well,” was a specific answer to what that actually means in terms of going out and having a little bit of a life outside of the home and treatments.
I thought it important to ask a tough question like that, because if I'm really that compromised, then a, "No," would have been my expected answer, but I guess it means that I can do more normal things at this point, as long as I’m adhering to the guidelines. There are some things I just am not ready to do, such as flying since that is still crazy under-regulated, but at least I know there are some possibilities, such as shopping, or going out to dinner, and even if I’m not mentally ready for all of that, but at least I know my body is fighting on my behalf when I’m feeling braver about going out. Another drug? Seriously, I thought we were done with all the suggested medications for breast cancer, but now Ellie brought up another drug Zometa, which is used for high blood levels of calcium that can be caused by cancer and used to prevent osteoporosis that can happen because of the other new drug that causes the menopause. It’s just ridiculous that a drug can cause osteoporosis, and therefore we are going to give you yet, another drug, to prevent what that drug causes. And, of course, there are side effects to the Zometa, such as kidney problems, pain in hips or thigh, jaw pain, anemia, low calcium levels, and the standards of, diarrhea, nausea, bone/joint pain, fatigue, and more, to add to those that I have already. It’s also $1,2000 a dose, of which my insurance, I'm sure, would cover most, but really? I hated that I had not been told about this drug when treatment was being discussed after my diagnose. The fact that 6 months into my treatment this was suggested, makes me wonder about the need for it, and even its reliability with all the side effects is questionable. I feel like I’m nothing but a cash cow, since our insurance is so good and has covered everything so far, with the exception of some of the prescription meds, which have been less than $20 each month. The idea of taking another drug that adds to the side effects I’m already having, and you can’t take pain relievers when taking this, leaves me sad that I’m now going to have to consider all that's involved and that is exhausting, in itself. Since my blood work has been just fine, and not showing any sign of a problem with calcium, I’m not sure this is a good plan, and trying to get an exact answer from people about “Why,” all of the sudden I need this, sends me into a tailspin. I told Ellie that my mental health is an issue and I finally asked for a referral to someone that understands all of this, and the turmoil that the drugs and the disease cause. The doctor’s office called today to tell me they can’t refer me and that I would have to go through my GP to get a referral, which left me in tears and angry at the person that called. I said that makes no sense. It’s what is going on, the treatment and the cancer that is causing me all this anxiety, and shouldn’t mental health be a standard part of cancer treatment? Nope, not with this cancer center anyway. I then asked, What if I told you I wanted to kill myself? She said, “Then I would have to call 911.” WTF? I don’t want to kill myself, but I am feeling overwhelmed, and wanted to see what she would say. I’m going to look for new doctors. I’m an easy patient as long you keep me informed and work for my well-being and my health, if not, it's time to break up, like a bad boyfriend that needs to be out of my life. But then, I go through this stupid conflict, telling myself to stop being a baby, just suck it up, until I keep reminding myself that mental health is part of physical health and the doctors and nurses work for me and should have my best interest at heart. Not in the “I’m special, and therefore should be treated differently,” way, but in the mental health support as part of the physical health sort of way. Help me to help myself, but I need the tools to do that, which is why I wanted a referral in the first place. That didn’t go over well, and I’ve tried really hard to stay at Sharp because it’s closer to us, and there have been a lot of nice and helpful people there, but now I feel stranded by this process of not getting answers, or support when I reached out to ask for mental health counseling, (a really hard thing for me), and so, I made the call today to talk with MD Anderson Cancer Clinic to set up an appointment. That adds a lot more stress for me, starting over with new doctors, but I’m tired of feeling like I have to spend so much time online looking up drugs, side effects and also how important it is to have mental health support—none which was offered from Sharp. What I liked about the information from MD Anderson’s Cancer clinic at Scripps is that they list not only physical therapy as part of their treatment, but several layers of mental health support, including phycological support as part of their services. A personal reference from a friend as to how well she is treated in that medical group was also encouraging. I’ll see how it goes when they call back, and hope for a better outcome and support system, and hopefully find a team that is not about “settling” for my care, but who will be active in helping me to support myself for the next 5-10 years that I will continue taking meds to starve off the cancer cells. A call back! I was told after the initial phone call to MD Anderson that someone would call in 1-4 days, and that was Thursday. By Friday afternoon Janae called me and walked me though the process of what happens next. She was empathic and very nice about trying to help me deal with the medical and mental side of cancer. She was also amazed that mental health wasn’t a part of the services offered.
Janae also explained that she would be off until Tuesday, but as soon as she got back, she would go to work on getting my records, but in the meantime, someone would call today (Monday) from the social services department to help me begin the emotional side of my treatment… whom I just spoke with and she allowed me to vent and is sending me a list of referrals for mental health care, which already arrived. Janne also said she would talk to the providers for physical therapy to help my joints and hands.
I feel like there is hope, which is often more of a construct for people with cancer, because of all the uncertainty, so if hope can be manifested from a couple of phone calls, I believe I have a new place to hang my head-scarfs. I’m grateful.