Can I Just Get Off This Ride???

So I spent the rest of yesterday wallowing in my own misery and despair. After crying a lot with my husband and calling my kids and closest friends I went to my granddaughters preschool open house and then to a meeting. There is something remarkable that happens when I sit down with a group of people and we talk about our fears. I am reminded that fear is an illusion, that I have all the tools I need to deal with whatever I am faced with if I just choose use them. I called my cousin and we sobbed and then laughed hysterically because it is all just too fucking ridiculous.

I saw the surgeon this morning. She removed some bandages and examined my incisions. Nothing remarkable there. Then she pulled out the pathology report and began to explain the results. During my surgery eight lymph nodes were removed and two tested positive for cancer cells. The margins of the tissue she removed from the left breast were not entirely free from cancer cells. Because of this she has scheduled me for a return to the operating room next Thursday. She will remove more tissue to ensure that there are no cancer cells remaining at the margins. Some more big words were thrown around, the gist of which were that my cancer is stage two, meaning that the tumor is 2 cm or smaller and it has spread from the initial tumor into 1-3 axillary lymph nodes.

Because cancer was found in two nodes, the recommendation for follow up chemotherapy is stronger. I have an appointment on Monday with a medical oncologist. The surgeon explained that he will discuss the different drugs that will best target this cancer. I have another appointment with a radiation oncologist the following week to discuss radiation treatments which will be done after the chemotherapy is concluded.

After my appointment we went to the local mega bookstore to find a book on dealing with breast cancer. Among the eighty seven million cookbooks, vampire chronicles and biographies of "reality" show stars, there was less than half a shelf of books on cancer. None of them were what I was looking for. I thought surely there must be another section that I had missed. I asked a sales clerk who told me that they don't have many requests for books on cancer so they aren't given much shelf space. I find that hard to believe when literally everyone I talk to has cancer or knows several people who do.

I am not sure why I feel a little more confident that I will have a good outcome after talking to the surgeon. This may not actually be the thing that is going to kill me, although after seeing what my daughter is going through with chemotherapy I may wish I am dead before it is over.

Biopsy Results

The waiting is shear torture. I am a pretty patient person, but at a certain point my ability to allow things to unfold in their own time without any urging from me comes to an end. Like when it's the day after I hoped to hear some news. The doctor told us that she usually knows the results of the biopsy by Tuesday. Well it is now Wednesday afternoon. A nurse called a while ago and to confirm my appointment for 8:00 tomorrow morning. I asked if the doctor had the results yet. She said that the report was on her desk. I asked if someone could let me know the results. The nurse said that she would ask the doctor to “sign off” on the report so that someone could let me know.

So I wait some more. I am trying to keep busy. Helping my grandson with his homework, which is a kind of torture in itself. Having a tea party with my granddaughter, her two babies and the dogs. There is some comic relief to be had with a three and a half year old in the house. At one point she put her baby doll in time out because she put too much chapstick on herself. I suspect the doll had some help, possibly from one of the dogs. I knit an entire chemo cap this morning, one of several that I hope donate to the cancer center. As I knit, knit, knit I think about the possibility that I will need this little warm cap and how nice it will look with my brown corduroy jacket.

Don’t they realize that I am desperate for some news? That I am on the verge of snapping the head off the next family member (a.k.a. grandchild) who gives me any shit? That at any given moment I might just stab myself with a knitting needle and end the misery? I am sure they do realize, and I know that I am not the only woman waiting for news. But I am the only woman in this house who is waiting, and it’s so very hard to take things one minute at a time. I have carried my phone with me all day, repeatedly checking to make sure that the volume is up and that I did not somehow miss a call. I tried to take a nap but could not fall asleep, so I am going to start knitting another hat. Maybe in a nice spring green.

Okay, so after three hours the nurse called back. Two lymph nodes positive for cancer and unclear margins on one side. Tomorrow we will talk about more surgery and appointments with radiation and medical oncology. Dammit all to hell.

Surgery

I arrived at the hospital early yesterday morning, feeling only slightly nervous. The first thing I was scheduled for was a needle localization. This is a pre-surgical procedure in which a wire is inserted through a hollow needle into the breast to localize the mass. I was taken to the mammography department, where the procedure was done while I once again had my boobs smashed in the giant vise. A mammography technician operated the machine and a doctor injected a local anesthetic and inserted the wire, which went through a small plastic clip. The wire protruded about two inches from this clip, and a very high tech dixie cup was placed over it and taped to my boob with scotch tape. This was your garden variety flat bottom cup. I thought they could at least have used the pointy ones so I could have that Madonna look going on under my hospital gown. The doctor explained that he was required to sign my boobs for some reason. I urged him to sign McDreamy, but he didn't go for it. He decorated me with his own initials and went on his way.

Next I was taken to nuclear medicine. NOT nuculer, Mr. Bush, nuclear. I was given more local anesthetic and injected with some sort of toxic nuclear stuff. This was done in order for the surgeon to perform a sentinel lymph node biopsy, to determine if the cancer has spread from the original site. I was also injected with some blue dye. The nuclear tracer substance and the blue dye move to the first lymph node (sentinel node). This lymph node is removed and biopsied after surgery. The blue dye also made my skin a sickening shade of blue. When I arrived home and put on my chartreuse green pajama top my face took on a cast similar to the Wicked Witch of the West. I am still peeing blue this morning.

After these procedures I was taken back to pre-op to await the surgery. The surgeon was running late and she had one other surgery before mine, so it was a couple of hours before I was taken in. My husband and I were joined by two old friends who kept me entertained and laughing while we waited. I was starving because I hadn't been able to eat after midnight. If I had known that it was going to be so late in the afternoon when they finally operated I would have taken a sandwich to bed and set my alarm for two a.m. and eaten it! Finally the surgeon came in and reiterated all of the things she was going to do, then she also signed my boobs. She put her name and a heart on them, slightly more artistic than the first guy.

A couple of nurses came in, shot some "I don't care medicine" into my i.v. and wheeled me into the operating room. I remember moving onto the surgical table and starting to look around the room. I was all prepared to tell them all that I watch Grey's Anatomy and I didn't want any of that bullshit going on while I was being operated on. They were to stick to the business at hand. I never got my chance because the next thing I knew I was starting to wake up in the recovery room. My husband was there and I said "Honey, those people hurt me." A nurse shot some good drug into my i.v. and pretty soon I didn't hurt so much. It took me a while to really wake up. I did not feel as bad as I had expected. I started drinking water and the nurse gave me some Lorna Doone cookies. They were the best cookies I have tasted in my entire life. Finally I got dressed and my husband drove me home.

I arrived home to two of my daughters waiting to take care of me, my kitchen counter laden with gifts of food, tea, chocolate and lots of other wonderful things. My sisters in law and neighbors really know how to brighten up a long and frightening day. I called and texted folks who were waiting to hear from me, ate some of the delicious food, watched a little t.v., took some more good drugs and went to bed.

Now I wait to hear the results of the lymph node biopsy.

Hope

I am having surgery in two days. The surgeon is going to invade my body in ways that I do not like to think about. I am trying to prepare myself mentally, spiritually and physically for what is to come. I have been drinking copious amounts of water so that I will be well hydrated. Napping every day has become a necessary ritual. Talking to my close friends about the stress I feel helps to ease the fear.

Someone told me once that it's easy to feel serene when you are in a closet all by yourself, but throw some people and situations into that closet and all hell breaks loose. I am not in a closet alone. There are people and animals and really crappy situations in my closet with me. All of which challenge me when I try to take care of myself. I'd really like to sneak out of this closet and go lay on a sandy beach somewhere and pretend that I am someone else. When I hear about identity theft on the news I think please, someone steal my identity and all that goes with it.

I was at a meeting recently where the topic of discussion was hope. Part of what I need to do to care for myself is to find a way to hang on to hope. I hope that the lymph nodes show no sign of cancer when biopsied. I hope that I am not in too much pain after surgery and that I will not be nauseous from the anesthetic. I have been told by others who have had breast surgery that it may be hard to sleep on my side or stomach. I hope I will be able to sleep. All of these small wishes pale in comparison to the things that I hope for my daughter. I hope the chemotherapy that is nearly killing her is actually working to prolong her life. I hope that she can tolerate the next cycle better than the current one. I hope that we can all work together to take care of her children during this godawful ordeal.

I know that there is always hope, even when things seem to be going horribly awry. Two and a half years ago the chances that my daughter would be here today were pretty slim according to statistics. I have survived many other trials. I have learned to trust the process which takes me through the pain and fear to the goodness on the other side. In spite of my past experience, as I look out my window at the frigid grayscale landscape it is difficult to feel hope. Then I remember that underneath the deep blanket of snow lies the promise of Spring. 

I Am Not As Strong As You Think I Am

I hear this over and over - "You are so strong, you will get through this." Or some other words to that effect. And I wonder, what exactly does that mean? What is it about me that makes people think that I am so strong? Is it because I am still walking and talking after every other thing I have been through, or because I get out of bed every day and take a shower and comb my hair? Does the fact that I have not lain down in the back forty and let myself slowly freeze to death somehow convey to people that I am more able than the average human female to handle the crap that has befallen me? Or is it just because I am not drinking or drugging in a vain effort to ward off the despair?

Well, let me tell you, I am not as strong as you think I am. I am on the verge of tears most of the time. I wake up in the morning and lay there for quite a long time trying to think of a way that I can just stay there all day. I have a very difficult time following a casual conversation because it all just seems so pointless. It is only through sheer force of habit that I shower and brush my teeth. I feel like the walking wounded and wonder why no one has thought to find a gurney to lash me to. I do not feel strong. I feel vulnerable and afraid and overwhelmingly exhausted.

I learned a long time ago that feelings are not facts, so maybe it's true that my ability to go on in spite of how I am feeling is a sign of some strength. Maybe strength is somehow tied to flexibility, to the way that we bend with the force of the bitter winds that threaten to break us. Perhaps strength is just a word that we use because we can't stand to think that we or someone we love will fold under the pressures of life.

So I wonder, if I am strong, where does that strength come from? A friend gave me a card today with a bible verse written inside - I can do all things through Christ who strengthens me - Philippians 4:13. Though I do not consider myself a Christian, I do like that verse. I believe in a power greater than myself, a force for good in the universe. I have spent many years learning to trust in the power of good, the goodness in those who reach out to me when I am in need. I see and feel "God" in everyone around me, and it is by getting out of bed, by turning away from the loneliness that makes me believe that I am unable to carry on, by reaching out to others that I gain strength. A burden shared is a burden cut in half, and I am strengthened by opening myself to the loving goodness of others. When I sit for a cup of tea with a friend and talk about the mundane details of life I gain strength to deal with the not so mundane details of life. When I write about the things I am experiencing I allow some of the burden to fall away from me.
You know how they say that there is strength in numbers? Well, when I stand in a room full of people, holding hands and saying a closing prayer, or see the counter at the bottom of this page that tells me how many are reading my words and following my story, I feel the strength of each of you filling me up so that I can go on for another day.

Doin' Time at the U

I started this blog to chronicle my journey through breast cancer treatment. There is never just one story, though. My story is entwined with the stories of others, and in addition to having cancer, I am the caregiver for my daughter who has cancer. I wish more than anything that this was not the case, that I had the luxury of sitting back and allowing others to care for me while I wait for my surgery date. After my daughter was diagnosed I screamed to the heavens "let it be me, not her." I didn't mean in addition to her.

So today is the first day of the first cycle of a new chemotherapy treatment. I would say that we got up at the crack of dawn to come to University of Michigan hospital, but dawn was hours away. We arrived here at 7:30 a.m. on the coldest damned day in history to have her blood drawn and chemo port accessed. Then we waited an hour to see the doctor. Then we waited another hour to be called into the infusion area. We will be here until about 7:00 tonight. While she reclines in a comfy chair, I sit alongside in a not so comfy chair. We have books and snacks, I brought my knitting and laptop, she has her iPad and is watching Downton Abbey. I would like very much to take a nap but it is impossible in this not so comfy chair with no place to put my feet up.

She is taking part in a research study, which is part of the reason we have such a long day here. In addition to the chemotherapy drugs she will receive an infusion of antibodies or a placebo. There is a 67% chance she will receive the actual antibodies, but we will never know for sure unless she experiences adverse effects. I am hoping that she receives the good stuff and not some useless saline solution. I want her to have the benefit of any possible thing available. She feels that no matter what she is helping others who come after her. I admire that about her.

The good news today is that we have been assured that these chemotherapy drugs should not be as debilitating as the last kind. Two years ago she would spend three longs days here at the hospital, followed by a week and a half of laying on the couch feeling like she had the flu and a hangover all rolled into one awful living hell. Then in another ten days when she just started to feel human again another cycle started. Over and over and over for months. Six cycles in all. But, the tumor in her lung was reduced by about 50%, so it was worth it. Granted, she did not think so while she felt like the living dead. More than once she said the only reason that she was going through it was for her children. I can relate to that.

Her oncologist felt that she would expect to see the tumor start growing again within a year. Well, it's been two years. Two good years. Two years with her children, friends and family. Two years of learning what is really important in life. Two years of gratitude for each moment. For me it has been a time to let go of the overwhelming fear, to embrace hope. I have learned to look at reality head on and to appreciate every good thing in my life.

When we were told that the tumor had finally begun to grow again I was gripped once again with powerful sadness. But I was quickly able to find that deep level of acceptance that I have gained over the last few years, to face what is right in front of me. So here we are again, passing the time by joking about hair loss and deciding what to have for lunch from the hospital cafeteria. All of the petty worries fall away as we sit here with others who are fighting for their lives with courage and grace. I know what the statistics say about this disease that wants to take my daughter, but I will not live in the fear. I will live in the hope and joy of every day with her. I will continue to believe that she will respond positively to the chemotherapy. I wake up each morning expecting a miracle.   

Education

I am all for education. About anything and everything. There are, however, some things that I would have been perfectly happy never knowing. Ever. I have learned far too much about cancer over the last few years and I am still learning.

When my uncle was diagnosed with prostate cancer in 2005 I became very fluent in the language of testosterone and hemoglobin levels, radiation treatments and blood transfusions, bone strengthening drugs and finally the management of end of life care.

In June of 2011 my daughter was diagnosed with synovial cell sarcoma. Bet you never heard of that one did you? It is a rare form of soft tissue cancer that usually affects young people. Synovial refers to a joint, where most of these cancers begin. My daughters’ tumor was primary in her lung, and did not begin in a joint. I learned about how a chemotherapy port (also known as a port-a-cath) is installed, about the awful effects of chemotherapy drugs, and the benefits of marijuana in combating nausea.

My cancer seems to be fairly boring. I have invasive ductal carcinoma. Have you noticed how I refuse to capitalize these diseases? I refuse to give them that much importance. Anyway, it is the most common form of breast cancer, 80% of all breast cancers are this type. The tumors were biopsied and I received a printout of the reports. There are all kinds of big fancy medical words on these reports. The following terms are used in referring to the grading of the tumors: tubule formation, nuclear atypia, mitotic rate, lymphovascular invasion, in situ component. Who makes up these words? I learned that this cancer is estrogen dependent, which the doctor says is a good thing. The use of estrogen suppressing drugs after surgery will help to prevent the cancer from returning. BUT, after going through menopause with very little problem I may experience hot flashes, night sweats, fatigue, mood changes or depression, nausea, dry skin, bone pain, headache, hair thinning, loss of sexual interest, constipation or weight gain.

Bombarding my chest with radiation will also reduce the chance of a recurrence. Radiation therapy can have side effects that occur both during and after the treatment. It may cause reddening or swelling of the skin in the breast area and I may feel very tired for 3 to 6 months. In the first 5 years after treatment, I may experience discomfort, pain, swelling, discoloration or other skin changes in the breast area. Some breast tissue may shrink or become hard when fat cells die.

I think I am already experiencing some of the mentioned side effects. After learning about all of these issues I am definitely depressed. And I am starting to feel a little nauseous. I think I need to smoke a joint.