On December 10th I had breakfast with some good friends, one of whom (diagnosed after me) has since died of metastatic breast cancer. They were mentors of mine and women I looked to for their life experiences and wisdom. We talked about ways I needed to change in my life in response to this second breast cancer. After my first cancer, I changed my career, and went to graduate school so that I could do something more meaningful. I was trying to figure out what this second cancer was trying to teach me. They were very clear about what they thought the lesson was – eliminating toxicity and stress. At the time, I was serving as primary caregiver for both of my parents. I was their health care proxy, power of attorney, and point person for interacting with healthcare providers and nursing home staff. My oldest brother consistently called, visited them, and took them places, but healthcare was my domain. We were the only two adult children living in town, so most things fell to us.
This situation was stressful and toxic for me for several reasons. My father hated needing my help and fought me on everything. My mother’s mental illness meant that sometimes interacting with her was very upsetting, but I couldn’t always choose to avoid her. I spent a lot of time and energy trying to get support from my out-of-town siblings and feeling like I wasn’t getting what I needed. Finally, I needed to focus on myself and my own health, and I had been trying to do everything on my own for long enough. N and C encouraged me to ask my siblings to take over, to permanently take my name off of documents that held me responsible for our parents’ care. Fortunately, I didn’t have to make this decision, because over the next few weeks, one sister started stepping in to cover for me because of the surgeries and ultimately suggested taking me off all documentation.
In the long run, I continued showing up when my parents had a crisis and often visited when I was up to it. But someone else bore the stress of making decisions for them and everything that came with that. I was glad to be relieved of that burden after seven years of feeling responsible, and to finally feel like my contribution was voluntary. My parents also started appreciating my visits more, now that I was no longer in the position of authority over their care. After my cancer surgeries and treatment were all over, my sister asked me to once again take on all responsibility for our parents, but I declined.
Blog: Tuesday, December 11, 2007
In 12-step programs they talk about fear being the absence of faith or, as another way of putting it, False Events Appearing Real. In our minds, we look into the future and imagine bad outcomes. I do it. Why else would I be afraid? I have great doctors, great support around me, MG to help me get through this. I live in a time when breast cancer is almost always treatable, and remission is almost always possible when it's caught early (which it has been for me both times). I live in a world where we have unprecedented access to information about the disease, about treatment options, and stories of other survivors and their lives after treatment. As I've been saying, it's a great time to have breast cancer, especially when you compare it to 10, 15 or more years ago. Or even 5 years ago.
So, this fear, then, is just my tendency to think that I am alone and that bad things will happen to me. Any of you can gently remind me at any time that what I need is more faith. Faith in God, faith in my doctors, faith in myself and my own resilience, faith in the people around me. When I am being fearful, I think it's always about needing more faith. So, my goal for the rest of today is to focus on having more faith.
MG and I will be meeting Dr D at 3:45, and I will post a journal entry this evening about how that went, after we have had time to eat dinner and process the new information ourselves. I know some of you will want to call to ask about it, but I would appreciate it if you check the journal first, and then maybe call tomorrow if you have any other questions.
Blog: Tuesday, December 11, 2007
MG and I met with Dr D this afternoon, and we both find him likable and confident.
He explained the reconstruction procedure, including my options regarding implant/non-implant, the benefits and risks for both. I am sticking to my non-implant plan, which he respects. There are some very, very low chances that I won't have good enough blood vessels in my left armpit because of previous cancer treatments (he's only seen this in 1 of his 700 previous patients) or that there will be too much clotting in the reconstructed blood vessels for the reconstruction to stick (less than 5% chance), or that he will have trouble harvesting superficial blood vessels from my abdomen that can support the transplant, which would mean he has to remove some muscle tissue to get better blood vessels (this is more likely to occur, about 75% of his patients require using deeper vessels).
We are in agreement that if one side doesn't work in terms of reconstruction, then we would not do the other side, either. I cannot imagine how I would deal with that, really, and he doesn't think it will come to that, but I needed us to be in agreement that symmetry was more important than size, and that implants are definitely out. Since I have decided to go smaller, that makes reconstruction more doable, but if I wanted to stay where I am in terms of size, I would need implants.
Dr D will be calling Dr G tomorrow to schedule the surgery, so we should know pretty soon. He didn't seem to think it would have to wait until after Christmas, but he also didn't lead us to believe that I would be home before Christmas. It would be hard to be in the hospital over Christmas, but I really just want to get this done and over with, so I will do what it takes.
Blog: Wednesday, December 12, 2007
No news on a surgery date, but I have been turned down for a referral to Sloan Kettering, which is very disappointing. Blue Cross Blue Shield thinks I have enough local expertise at my disposal that I don't need to go out of my area for a second opinion. I am trying for a referral to Roswell Park in Buffalo next; I'll let you know if I get turned down for that as well.
I had a rough night's sleep and am just not doing a very good job of accepting my life today. When we went to see T's concert tonight, M said "faith, faith" and he's right. I am afraid of this surgery, I am afraid of becoming a collection of scars, I am afraid of the chemo, and so I want my reality not to be my reality. But it is, so I need to get back to faith and then somehow back to acceptance.
Coming to grips with this diagnosis and trying to put together a treatment plan with my doctors and the insurance company was an emotional roller coaster. I think this is a common for people facing a cancer diagnosis. If it’s not waves of fear as the diagnosis becomes more and more real, it is episodes of frustration and anger when your insurance company refuses to cover a second opinion or one of your doctors fails to meet your expectations. Luckily for me, many of my friends and family were supportive, encouraging, and patient, even if they had never had this experience. They could not know what I was going through, but that didn’t stop them from helping me feel cared for and understood.
Blog: Thursday, December 13, 2007
Dr D is not just the best plastic surgeon in the Syracuse area that does this particular type of reconstructive surgery, he is the only one. Which is why they cannot do the combined surgeries until January 30th.
Can I wait that long? Or, alternatively, can I live with a mastectomy first and then wait for reconstruction later? The scarring is different if you go that route... and what about my lymph nodes? and chemo?
I have calls in to both surgeons to discuss my options (can I get the lymph nodes out now and the mastectomy later - will insurance cover both?) and the risks of waiting (am I facing increased chances of metastatic cancer if I wait?). What if I do wait, and then I find out the cancer IS in the lymph nodes... I will never know if it was there already today, or if the waiting made it be there... is that possible if the tumor is gone now?
And then I think of Laurie M., who was all over the papers a couple of years ago. She had DCIS, and a family history of breast cancer, so she got a bilateral mastectomy with reconstruction, and they found other, invasive cancer in the breasts that they were unable to detect before... what are the chances of that?
So many questions. As soon as I have answers I will post them and my decision, but until then, I need to eat some lunch and try to do something productive to keep my mind off of this stupid fricking cancer!
Blog: Thursday, December 13, 2007
We are going to go ahead and do the mastectomy and reconstruction on January 30th, but we are also going to go back in and do a sentinel node biopsy on December 26th.
There's only something like a 3-5% chance that a tumor my size showing no sign of invading lymph or blood vessels would have gotten to my lymph nodes, but since the odds have turned out to be against me at almost every step this and last time, I think we will all feel better to just go ahead and get those nodes biopsied.
The only reason that this will not happen will be if my insurance company refuses to cover it. I'm hoping they won't refuse, especially since I have two specialists who think it's a good idea.
This involves nuclear medicine imaging as well as surgery. Here is how the day will go - I check in at 8:30, I am in nuclear medicine by 10:30 for injection of the radioactive dye and imaging to detect any hot spots in my lymph nodes, and then I am in surgery at 1:30 with Dr G.
So, we won't be getting this done before Christmas as I had hoped, but at least I won't have to wait 6 more weeks to find out if this stuff is in my lymph nodes.
On the upside, if my nodes are negative, then I can relax for the month between surgeries knowing that I'm not putting myself at additional risk by waiting, AND if there is cancer in the nodes, I could potentially get moved up in the priority list for the mastectomy/reconstruction, or I might become a candidate for chemo first and mastectomy and reconstruction afterwards.
Blog: Friday, December 14, 2007
I don't have any news today, other than another letter from my insurance company about how I should get my second opinion from a local provider instead of from Sloan Kettering. But I'm still waiting for my doctor's office to try for a referral to Roswell Park in Buffalo, and EK has advised me to ask for a referral to Dana Farber in Boston. He also suggested that I draft a letter for my primary care physician justifying why "the patient" needs a second opinion and potentially front line care from a larger cancer center. Basically, the argument is that this is a recurrence at a young age…
I also got a call from the hospital, the pre-surgical interview for the Dec 26 sentinel node biopsy, so I'm all set for that. Now I can spend the next week thinking about Christmas and my grant proposal revision, instead of thinking about cancer.
I also downloaded some meditation podcasts, and some audio books by Bernie Siegel. My goal is to spend at least some time every day working on positive self-messages and letting go of fear and negative thinking.
Blog: Monday, December 17, 2007
I got a call this morning from Dr D's office, and now the January 30th date may be off the table, depending on the results of the sentinel node biopsy. … The scheduler did not attempt to predict how those biopsy results would affect the scheduling of my surgery, but she did say that she didn't want to bump the patients that were already scheduled for surgery that day without knowing my surgery would definitely happen on that day. I don't argue with that. These women are waiting for reconstruction and shouldn't be jerked around by this for no reason.
It is my understanding that if the nodes are negative, then the level of urgency for my surgery is lower. I don't know if this would translate into a delay or not, and she couldn't answer that question…. It is also my understanding that if they are positive, it could mean I get higher priority and therefore an earlier surgical date OR it could mean that I start chemo first and surgery later. I think the jury is out on that question for all of the doctors involved.
… I also got a call from human resources up at the University. EK called them about my rejected referral request to Sloan Kettering, and now I have someone there looking into it for me. What a relief. I would never have called for help because my first request for information 2 weeks ago was immediately rebuffed and I was told to call the insurance company for any questions on referrals. It is nice to know that I have advocates in "the system," who will help me try to get my second opinion from my preferred source.
My youngest sister had a toddler and newborn twins, born just before I got my diagnosis. Nothing takes your mind off your own problems like helping care for three small children. Not to mention the entertainment factor of the three-year-old, and the comfort from cuddling those babies! After the lumpectomy, I couldn’t hold the babies for weeks, but now that I was feeling recovered, I wanted to get as much baby time in as I could before the next surgery. I was happy to be strong enough to travel and spend time with them.
Blog: Friday, December 21, 2007
It's only been three weeks since I was diagnosed, but it feels like a lifetime... I have gone from having the wind knocked out of me and being in a state of total shock, to having this cancer be something that I plan for and around, and something which I am trying to learn to live with, to overcome, and to leave behind me, all at the same time.
… I can't help but be aware most of the time that I am dealing with a disease that, if we don't totally abolish it from my system, has the ability to kill me. So does a speeding car on the highway, E might say, or a plane every time I board one, MG might also mention. These are both true. Life is a gift, one that can be taken from us at a moment's notice. But I rather prefer the idea of experiencing the potential, unpredictable surprise death from an accident, rather than the death that happens when someone has cancer.
I don't think anyone around me wants to talk about or think about my possibly dying of cancer. I don't think I even really want to talk about it myself. But the thought is certainly there, and I don't ever really forget it. The bilateral mastectomy is my attempt to quiet that fear, as is the willingness to undergo chemotherapy, which is something that I also fear, although apparently not as much as I fear the risk I incur by not going through it at all.
What struck me this morning is that it is possible for a person to absorb this potential for death and to learn to live with it. I am certainly much more emotionally able to live with it today than I was three weeks ago. I suppose that if one is to be a long-term survivor of cancer, which is my plan, you have to be able to live with the knowledge of this potential death, but without the fear of it. Bernie Siegel might say that this requires the acceptance of this possible death and making peace with your life and how you live it. Being truly authentic, which not only helps you live without the fear of death from cancer, but also helps you live your life in a healthy way, enabling you to heal from the cancer and perhaps curing you of it.
I think that most of us would be happier, freer people if we were living our most authentic lives and were unafraid of our own death. But how do we get there? In our society, death is not treated like a natural progression. It is treated like something that is to be feared and avoided, at all costs. Look at how much money we are willing to spend to extend human life, to replace failing organs, or even to extend the lives of our pets. Yet death is inevitable. All cells die, and all organs, which are composed of cells, must then also die. Which means that all life, which is dependent on cells, must end. And yet, we don't talk about it, we don't regard it an essential and inevitable stage of life. If you insist on talking about it, you are morbid.
But then life happens, and people around you die, or you yourself are diagnosed with a disease that could kill you. And you are not prepared to talk about it.
I would like to be more prepared; I think it would help me let go of the fear. But how do you get there? That is the question for today.
Blog: Friday, December 21, 2007
E asked me at lunch if I was afraid of death or of dying, and I think it is the dying that I am afraid of, rather than death itself. L is right, I think, about death being peaceful, especially if you are living a painful life. And there are certainly times in my past when I have thought that being dead would be easier than surviving what I was being asked to endure.
That is not how I feel now. I much prefer living through this cancer and getting on with the life that I have built for myself. I have unfinished business, academically at least, and good friends to enjoy, and of course, MG to spend my life with.
But I am not afraid of the being dead part. I tend to think that I will either just cease to exist and therefore experience nothing, or I will be in a good spiritual place and therefore experience nothing bad. What I am afraid of is the process of dying of cancer. It's never pretty, it's painful for the person doing the dying and for the people watching the dying. And I also agree with L that I think one of the worst parts about dying would be knowing that you are leaving the people you love behind. I don't ever want to be in a position where I have to leave people behind that I don't want to leave behind. I crave having power over that choice.
Of course, none of us have power over when or how we will eventually die. This type of control is so far outside of our reach that we cannot even imagine what it would be like to have it. All control is just an illusion, after all, another truth that I avoid whenever I can, but which is completely unavoidable in the face of a cancer diagnosis.
E reminded me at lunch that this fear I am feeling, False Events Appearing Real, is based on what I think dying would be like. But I cannot really know. That is where faith comes in again. And where meditation would be very helpful. Of course, holding babies helps with that, too.
Sunday, December 22, 2007
“I think you're doing a great job taking on and preparing for the possibility of death in your conversation. Through your incredible generosity - sharing it in your journal - you have opened the dialogue for all of us, even if it's just for you and part of your process. You've definitely contributed to me as I contemplate the possibility of my own death as I take on rectal cancer each day. Opening up my inner dialogue...am I prepared for the possibility of my own death at my young age? ... Sometimes I find freedom in simply discussing the possibility of my own death with others - those people in my life who are committed to authentic conversation. Other times my process shows up in the form of tears - crying my eyes out because I want life - death is just fine, just not now. Other times it's through crude and dark humor, which I will spare you for now. Bottom line is, I express whatever I feel - sadness, anger, shame - whatever is there even if I don’t understand the emotion - sometimes alone, sometimes with a friend. It's an open channel that I believe must remain open so that I can bring myself back to being at peace with the possibility of my death...”
“I have never lost someone close to me that would break my heart. It is my fear that I will lose my sister and my friend, and I can't imagine the pain that I will feel if that were to happen… The older we get the more likely it is that we will lose those we love. I am selfish - I hope that I will go before I have to deal with such a loss - although the mother in me is slowly taking over and would rather sustain all the pain in the world to not have her children lose their mother.”
