BC Becky

Never Thought I’d Want to be a Breast Cancer Survivor

Tag: empathy

  • Not talking = not blogging

    I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

    I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

    Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

    My mouth sores got bad enough for me to ask for stronger drugs.  I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

    But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

    I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

    My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle.  The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

    Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

    We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.

  • Recommended reading

    Kelley Doyle Philbin writes an elegant post entitled “EVERYTHING I NEED TO KNOW IN LIFE I LEARNED WHEN I WAS DIAGNOSED WITH BREAST CANCER!” that I highly recommend. I found a lot of her words resonated – both with my experience and with the experiences that others have shared with me during various support groups that I attend. Her words so elegantly reflect the reality for many women.

    I am sad whenever I hear of men leaving when their partner has breast cancer. I find myself wishing for these women that they find a real man (or women) – one who truly loves them for who they are – as I have been so lucky to find my true life partner. Any man (or women) who is so shallow doesn’t deserve the love of the strong women who are cancer warriors.

    I also worry, not about my husbands love for me, but about his health – and what he needs to be doing to take care of himself, because it is a lot to take care of me and I cannot adequately take care of him. At least not right now, not in this moment, when I’m too focused – sometimes feeling selfishly focused – on me. But knowing also, that part of being a warrior is being selfish when I need to be – cause right now, I need strength to mentally (more so than physically) get through two more rounds of AC chemo and 12 rounds of T chemo!

    Soon, this shall trump both RAGBRAI and Africa as the hardest thing I’ve ever had to do!

     

  • Meltdown

    Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

    I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

    I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

    I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

    I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part.  I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

    So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

    Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

     

  • Negotiating identities in multiple worlds

    I find myself living between two worlds – or perhaps more – negotiating my different identities.

    Anyone who gets breast cancer under 45 is considered to be ‘young’, so I’m re-negotating what it means to be a young cancer patient. In church, we had groups for young adults age 18-35 and I remember the very awkward transition that happened as I could not relate to the younger group. We ended up starting our group of 30-40 somethings that allow us discuss spiritual and life issues in an environment we could relate (eg. kids, career orientated jobs, mortgages, marriages).

    With the cancer groups, I find that professional I relate to the 55 ish old women. These are women who have established professional careers (consults, or other professionals). It is a peer group that I can relate to – however, I don’t have the same kinds of cancers they do. I find that when they hear of my cancer it scares them – because is it not what my first surgeon called “old lady cancer’.  They have slow growing cancers with life expectancy outcomes in range of 95-98%. They are the survivors.

    The young cancer group has so much more to detail with, in many ways. They usually have more aggressive cancers. They are often raising young children (or early teens). They have family obligations and concerns. Some have great support but others are just amazingly powerful women that just power through cancer treatment without asking for help from their families. From this perspective. I’m not that strong, or perhaps a little wiser. My bike trip (http://goingeast.ca) has shown me that people want to help – and sometimes it is better for the people in your lives if you can provide them with concrete ways to help.

    I do find that my empathy levels for others has increased. I worry about how my fiends and family are adjusting. So, although I may blog a lot about myself and how I”m feeling at a particular time, I do it with a worry about how others will feel when they read it. What will help others understand.

    I often find myself forgetting to send out thank-you to those who have sent cards and well wishes. I want to say that I really appreciate everything that has come my way – I just cannot keep track of it all, nor track down everyone to say a personal thank-you. But I do want to say it hear. I greatly appreciate all the support and kinda words I am getting. I hope my short thank-you is enough for you to understand that you too are in my thoughts and heart.

css.php