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Posts Tagged ‘grief’

 

It has been a long time since I’ve posted anything in the breast cancer journal. My journaling has taken another path – it is not online, and it is not about being a breast cancer survivor. My mother died in August and a lot of what I have been writing about privately describes my journey through grief.

On August 11, 2010, I went to Denver for my check-up with the doctor at the imaging center and my oncologist. The doctor at the imaging center looks at the mammogram and ultrasound results during my visit, so I knew by the time I was on my way home that I was still NED (no evidence of disease). My oncologist wanted me to have another mammogram and a visit with her in six months; after that, my mammogram schedule would be once a year. She reminded me that it was almost five years since my diagnosis, and at the five-year milestone, my risk of recurrence would go down so significantly that it would be about the same as for all other women in my age category.

On my way home from the hospital, I called my family to let my mother, who was out of town for a medical procedure, know that my check-up was good, and Mom was very happy about that. The following day, unexpectedly, my mother died during the procedure.

Now it’s January, and in one week, it will be five months since my mother died, which seems impossible. And a month after that, it will be time for my six-month checkup, the last one before my anniversary, and a month later, it will be March, five years from my diagnosis, and the milestone that has been my goal: stay cancer free for five years.

In the meantime, I am not feeling well – I am so tired, I am not sleeping well, I have headaches, I was not eating right. For a while, I didn’t have much of an appetite. When I did, rather than going back to my  low-fat diet, I began eating comfort food. This week, I brought home bags of fresh green vegetables and am determined to start eating right again. I fluctuate between feeling relief of getting to that five-year mark and the nagging stress of not feeling well and needing one more round of tests before the anniversary to make sure I am still okay.

Things that go through my head, that I try to dismiss:  Why am I so tired – as tired as I was when I had cancer? Because my cancer is back, or because I am grieving and not sleeping well?  What about my headaches? When reading, why do I see “red bed and butter” instead of “rye bread and butter”? Why am I having trouble with my speech? Because I’m getting aphasia, or because I didn’t rest well? Why am I so forgetful? Are these real and lasting memory problems, or is it just stress?

Those are things I wouldn’t admit to my friends, but somehow am okay with posting on the internet where other survivors can read them, because I know you understand what I’m talking about.

Underneath all of this, I somehow feel settled about things. Although I hate it when people say my mother “is in a better place,” I believe that my mother is okay and that she will always be present to me in ways that are more palpable than memory, because she is my mother, and she will not abandon me (a wonderful thing a friend said to me). I believe that I am probably still cancer free and will get through my checkup okay and that the lumps under my arm are from something else and will go away. And if they aren’t gone in two weeks, I will make an appointment to have them checked, as I do with other things that don’t go away. I believe that grief is a non-linear, inescapable process, part of being a human being, and I vow to try to learn from my children, who have lost their fathers, how to live with it with dignity.

And I believe that even if I don’t remain cancer-free, we are all playing our part in the unrelenting and majestic evolution of the cosmos, and I believe in what some people call the communion of saints or souls, and some people call the cosmic consciousness, and, as my sister says, “I believe in the seen and the unseen.” And I hope to learn courage from others who have gone before me.

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After not posting here for quite some time, I had a very flattering comment from a reader to say my voice was missed, and that people worry when too long a time goes by between posts. I hadn’t thought of that. I follow some other people who are journaling about their experiences with cancer, and know I’ve been concerned when I don’t see an update from someone who posts regularly.  But for some reason it didn’t occur to me that any of my readers would be worried.

So thanks for commenting to let me know.

In February I posted about the need for patient navigators, to help terminally ill people who are overwhelmed by this disease itself and do not have the resources and energy to deal with the bureaucracies of health care and insurance. My friend was farther along in his disease than we wanted to acknowledge.  He went into the hospital in March, we thought for a few days to resolve some side effects of a chemotherapy medication. One day a perky doctor that we hadn’t seen before even told us we could take him home that day. We said we needed some preparation and information about home health care and were even told that a physical therapist (whom we knew nothing about) said the patient didn’t need any home care assistance. We were astounded, since he needed help for all basic needs and hadn’t been able to eat or drink anything. So that discharge was postponed, ostensibly to give the hospital time to get the home care arranged.

So one day we were told to make him eat and drink so he could go home, and the next we were told if he didn’t want to eat or drink, not to force him. It was completely baffling and we had no idea what to expect. That, combined with our denial, didn’t prepare us for what was next – we were still preparing to take him home. Then we were prepared to take him to hospice.

We lost him on April 4.

I have been thinking about the post that I wrote about my resistence to using the metaphors of war for this disease of cancer. I was open to the possibility that I was wrong. After watching what my friend went through, the first post I wanted to write when I was able to come back to this journal was to say, “I was wrong. It is a war.”

I have not been able to articulate more of that yet. I have not been able to say much of anything. Our grief is overwhelming.

During this time, I was supposed to be helping start a local support group for cancer survivors, to finish a small directory of resources available for cancer patients and survivors in our little town, and to participate in a training to volunteer to help other breast cancer patients, and setting up an information resource center in our local hospital. All I wanted to do at that time was to not hear any more about cancer. Not to think about it for a while. What a luxury and privilege that would be. And I use “privilege” in the most pejorative sense.

We’re not able to have that luxury. We have to just keep on – taking care of ourselves and hoping that we can spare other family and friends more of this grief. Taking care of others that we love. Taking care of people we don’t know. Raising money for a cure for strangers. Finding information about prevention and good health for our children and grandchildren. Carrying the memories of those who didn’t want to go but are no longer here.

I don’t know what else to say right now. I will be back. Thanks for caring. I love all of you who care enough to read this.

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