May 2010 – Riding a new Horse

Memorial Day

A long weekend. A long afternoon in my garden. A quick visit from M, my life long friend. We ate wonderful food at the Post Office Cafe and sat by the fire pit at twilight. After she left, I attended a Memorial Day celebration at our old town hall and local cemetary. I stood there listening to the bagpipes, the boy and girl scouts reading the names of our town’s fallen soldiers. I remembered the eulogy that we wrote for Pop and started thinking about the things we share after someone goes out. I think of Mom, all that she is to all of us, and just can’t seem to believe that she totally gets how much she has given us. I thought about how important it is to me to tell people, somehow, that they enhance my life. I thought about how I would like to be remembered. Then I thought that was presumptuous.

M and I were at the greenhouse yesterday. Something really funny happened and we laughed so hard we could hardly control our bladders. You know how that happens. You laugh until you can’t breathe, your eyes tear and every time you think of what happens, regardless of where you are, the fit starts again. Every time we tried to tell the story we just started cracking up. My eyes are tearing just writing about it. It’s sort of like trying to tell a dream that you might have thought was really funny. B tells me I laugh in my sleep, and never seems to get it when I try to explain what was going on in dreamland. M and I tried to tell the story when we got home, but the audience shook his head and looked at us like we had too much iced tea or something. (It wasn’t even Long Island iced tea that we were drinking…) My point here is that remembering time with M, even though it was just a blink of time, fulls me with whatever laughter and love are made of.

At the ceremony today I had the good fortune to see many people whose families have grown up with ours. People touched my hair, commented on the texture and color, asked where the scarves had gone. The treatment journey all complete and life on life’s terms, back into normal. When I spoke with brother M today he said “considering everything, normal is excellent”.

The radiated area is much cooler now. No more breaking down skin. A little rashy, but nothing like it was. I have some appointments this week: a bone scan tomorrow to get a baseline to monitor as I continue to take Tamoxifen. My annual exam Thursday, again baseline for monitoring endometrial tissue changes if there are any. Mamogram later in the month. I notice that I blog less and less about breast cancer and more and more about life now. I notice that conversations now are about life as well. It’s really nice to be back.

My friend was recently diagnosed with breast cancer, both breasts, double mastectomy is scheduled for tomorrow. When I found out I called her immediately and insisted that she put my cell phone number where she could find it whenever she needed anything. I visited her and brought her a few things that were shared with me, but most of all I brought my experience. This is not a baton I want to pass to anyone. You have all taught me how to support someone going through this. That is the baton that I will take from you as I run next to my friend B.

Alive

It has been such a terrific weekend. I don’t think the weather could have been more perfect for B and E camping or for the prom that A attended with her friend. (She looked beautiful and had a great time, by the way. We have a funny story about hair that one of us will write about soon.) I had the place to myself last night until A came home, and decided to watch a movie that was sitting on our computer. It was a fun movie. It wasn’t about the matriarch’s breast cancer, but at the very end she informed her kids that this time it was it, and it was apparent in the last scene that she’d died. My first thought was to protect my kids from this. My second thought was not to.

The reality that the cancer could come back (or perhaps not have left completely) is something that comes to me from time to time. But a true G.O. doesn’t hold on to this for long. When I see people I have not seen in a while they ask if the cancer is gone. My answer is simple. My surgeon said it was gone when she visited me the day after surgery. My oncologist suggested it was gone as well. When I think about the fact that a rogue cell could be hiding in my tissue it lasts for a second or two, and then I think that I never wondered when the bus would hit me before all this began. When I get asked ‘what’s the prognosis?’ I just have to tell it like it is. I don’t really know, but I do know a lot of people go on to live long lives and some die too early. We don’t spend much time talking about this at home. I think I can speak for all when I say that we are just happy to get back in gear together. At this point I am encountering people who never knew that I had cancer, and they are none the wiser. This to me is a good sign that I’m moving beyond it all to the degree that I can.

After a weekend like this (minus the hot flashes), I could almost convince myself that the past 9 months didn’t exist. Really. I feel very good. My scar is healing very nicely. My range of motion is almost back to normal. When I got out of the shower E was happy to comb my hair, like he did before I shaved my head. He even messed around parting it in different places. I was in the garden today, harvesting lettuce and spinach, planting some perennials, watering the cabbage and broccoli. I primed the floor boards for the bathroom. See? It’s life with spring breezes, projects, katz finding sun spots beneath the sky lights.

Since this blog is about ‘a family’s life with breast cancer’, I will keep you informed. My next appointment is in a couple weeks. The tamoxifen update is thus: I don’t feel any different. I’m active, I’m eating well and sleeping well. I did have a couple people ask about the detox. It was a week long, and was based around a cabbage soup. You eat a combination of the soup with veggies, fruit, bananas, skim milk and protein on different days. I don’t know if it has anything to do with my overall feeling of well being, but I felt good following the recommendations through to the end. I’m not going to publish it though. I think that if people are interested in doing a detox, they ought to have someone advise them. I really trust my herbalist and she was my guide. When we agreed to follow the recommendations from the medical model, we also agreed to balance it with other advice. This particular advice came from someone I trust, in whose hands I feel very supported.

Sitting here on my deck, with the late afternoon shadows in the forest that surrounds our house, glints of sunlight on the spring green leaves, with the birds and tree frogs chirping away, I am awake to the fact that I like being alive right now. I am going to do what I can so that it lasts a good long time.

Life after radiation

So here I am walking around in my life, doing what I consider to be absolutely normal things. (Success in the prom dress catagory, by the way.) Minding my own business…oh and that of my children, and maybe B too. Since I’m at work most of the day many days of the week, I am around people who have known me for a really long time. Virtually everywhere I go, I am greeted by people who are just smiling from ear to ear at me. I have NEVER had so many complements on my hair. Now, truly, ANY hair is better than NO hair for me, so I can understand all the fuss. My head is finaly not cold (most of the time) and hair this long (or short depending on your perspective) is unbelievably easy to care for. I started putting conditioner on it this week and the curls may be small, but they are more defined. It’s actually a really fun length. I just love reaching up and messing around with it now. All I’ve felt for months and months is stubble, so this feels quite luxurious.

I went to the Survivorship clinic at the cancer center this week. I was expecting just to talk with someone about volunteer opportunities, and ended up having an appointment with a nurse who said the clinic was a new thing. They are trying to help survivors manage all the follow up appointments, diet, exercise and stuff. It was ok to talk to someone about this, but I really feel (and so did she) like I have all of that in order right now. I did come out of it with a bone scan appointment. They just want to be sure no osteopenia or osteoperosis exists as I head further and further into a chemical induced menopause. She did ask if I wanted a blood test to see what my hormone levels are. Something about seeing if I’m in a true menopause. I asked what we would do with this information and she said it was just for knowledge. I declined. It sort of reminded me of our decision not to do any prenatal testing or sonograms. If the results were not going to affect my actions, why do an unnecessary test? (even if it is just a blood test) I’ve set up a pap next month to get a baseline before the Tamoxifen is too established in my system. They want to monitor my endometiral tissue right from the start. I have a mammo in late June and a follow up with my surgeon (who will be following my mammos from now on) in July. Follow up oncology and radiation oncology appointments too, in June. I guess there is something to say about not going in every day, but again, GEEZ. So many appointments. I said earlier in this blog that I wanted to be sure to keep up with monitoring. So here I go.

During one of my last visits to the center, a young woman in silent tears was pushing a wheel chair. The elder woman in the chair had a blue hat on and she was crying too. She looked exhausted. Someone once told me that it would be important to not focus too much on what/who I saw at the center. We have overheard conversations of people with a terminal diagnosis saying they are just going to live fully. We have seen people whose skin was gray, who looked like they had nothing else to give. We have seen people who are too young, and elders who have lived long lives. The woman in the wheelchair and her caring young woman escort were sharing something together that is sacred in my opinion. Whatever it was, it just touched my heart.

This may sound ridiculous, but when I think about cancer, I don’t associate it with myself. With all that this body has been through, I’m amazed that I feel this way. The battleground that is my body doesn’t feel like it’s war torn. I mean there is obvious deformity, but I guess the way I think about it is that the cancer is missing now. The effects of radiation are fading slowly, still some tenderness, but definitely cooling off. I am shocked at my energy level. Now mind you, I’m sleepy usually around 8:30 or 9, but that’s not too much different from my norm. This week especially, I’ve been on a nutritional detox, and I am really surprised at how energized I feel. I know detoxing is supposed to make me feel good. But I’m still intrigued. My body is recovering. I’m getting more exercise. I feel pretty healthy for someone who apparently had cancer. This whole paragraph is so G.O., isn’t it?

So here are the pictures of my scar, for anyone who wants to see. In the 3rd and 4th pics you can clearly see the effects of the breast booster radiation along the scar. I feel somewhat like an exhibitionist, but here they are.

Radiation day #1:

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Radiation day #33:

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9 days post radiation:

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12 days post radiation:

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I’m no longer putting my hand tenderly under my arm to ease the burning pain. I’m using less silvadene. I’m grateful that the soreness is fading. I’m on the last day of my detox, and really, I feel quite good. Thanks for keeping up with me.

Tamox and Detox

Well, almost a week on Tamoxifen and I’m doing well. I really have not noticed any side effects yet. I have a long way to go in that department, but so far, so good. What more could I ask? As far as my skin goes, if you picture a rectangular patch from sternum to side ribs, clavicle to just below where a breast used to be, much of the redness is fading and the sloughing skin is smoothing out. There is about a 3 inch patch over the scar that is pretty hot and breaking down. The most sensitive areas are at the ends of the scar. I have to be careful when I dry off from a shower not to rub that area. The skin could just fall right off and that causes really raw areas. Dead skin is not pleasant to look at, but at least I can see that some healing is going on beneath it. Don’t know if there are any morbidly curious people out there, but I will publish some scar pics from before, during and after radiation. Probably once I see that the scar is in healing mode rather than breaking down mode. I’m totally morbidly curious. I love to talk about body fluids and would be very curious myself.

I visited my herbalist last week and she gives acupuncture some of the credit for my not experiencing neuropathy with all the chemotherapy I had. I give acupuncture credit for a lot. I still do not believe that I have any signs of neuropathy. I’m so grateful for this. She also gave me a menu to cleanse my liver. I want to do this to mark the end of chemicals and treatments (other than Tamoxifen, of course.). A has decided she would do it with me. It’s so nice to have a partner in this. We are on day 3 of 7 today. All is going well. My acupuncturist treated me this week, using points related to my breast area. I am still intrigued by acupuncture. I strongly recommend it (not just for breast cancer treatment, by the way).

I’m back to work full time with the exception of the few interspersed appointments that I have. It feels good to feel good. I’m not as fatigued this week as I thought I’d be. D and I have made it out for our golf course walks 3 times this week. In fact we are due in 5 minutes to go this morning so I’d best be off. I pick up E from a friend’s house after that, and then head out prom dress shopping with A in our favorite local city. Life is normal. That is good.

Odds and Ends

Today was our first follow up with Dr. Oncologist. I am a candidate for Tomaxifen because of the type of cancer and that I can metabolize this particular drug. I am also a candidate because I am not prone to blood clots, I don’t smoke, I don’t take birth control. In addition to blood clots some other side effects include endometiral cancer (prevents one cancer and can cause another). Weight gain is also a side effect which thrills me to no end. Tomaxifen should start within 30 days of radiation ending. Some choose to regain some strength, others start right away. Tomaxifen is recommended for me because I’m considered premenopausal even though chemo put me into a menopause-like state. It will keep my ovaries in check. It could happen that once the 5 years is up, I might return to having periods again and go through ‘natural’ menopause at some other time. We were told today that if I only did surgery that there would be a 50% chance that I would remain disease free. Since we did chemo – surgery – chemo – radiation, there is an 80% chance that I will remain disease free. Well, actually she said a 20 % chance that it would reoccur. B and I both like to look at the 80% better than the 20%. She said people who are active do better in all regards most of the time.

The plan is

Start the Tomaxifen this week and take for 5 years.
Meet with Dr. Oncologist in one month (or sooner if I feel lousy). We can stop the med and wait a couple weeks if needed. We can also stop it all together and choose another drug if needed. Lab work at this visit to monitor liver functions and other things.
Meet with Dr. Radiation Oncologist in a month.
Have yearly paps to monitor for abnormal endometrial tissue.
Have a mamogram every 6 months.
Have a breast and chest wall exam every 6 months.
The first scan will be at 6 months to check on my liver, since there was initial observation of something there which was not thought to be cancer. She said that a lot of people at this stage ask why they are not getting more scans to see if there is any cancer. Here was her response: “We are not going to go looking for this. We do not want to expose you to any more radiation than you’ve had if there is nothing telling us that there is a reason to look for something. ” It has been said to us by Dr. Oncologist and Dr. Surgeon that the cancer was gone after surgery.

When I think of that last statement, my mind wanders. A part of me wants to say “how do you know?” I’m not much of a skeptic, and yet of course I want proof there is no evidence of cancer in my body. This is something no one can say. I don’t know. There was activity in some of the lymph nodes. This puts me in a different catagory than someone with no lymph involvement. The nodes are supposed to drain the system and yet they can also be the gateway into the rest of the body. It is my understanding that we don’t know if the cells that were found in the nodes were being drained out after chemo, or on their way to greener pastures. We do know that the pathology report said that at least some of the cells found were ‘chemo affected’ which seems to indicate that they were on their way out.

Meeting with Dr. O was a mixed blessing for me. It marked the end of aggressive treatments. It was yet another meeting where I’m in the petri dish with others and am part of the stats which mark the survival of the human with invasive breast cancer. I’ll keep you posted on the Tomaxifen effect.

Birthing Day

I have always taken my children’s birthdays off. They have the choice whether they want to take the day with me or not. In elementary and jr high school hanging with me was the choice. What we did was entirely up to them. This year on E ‘s birthday he and B went camping. Looking back, I’m happy to see that I blogged a bit on that day. At some point on birthing days, we all get together and talk about the birth of the celebrant. It’s so much fun to hear A talk about E‘s birth. (She was 2 1/2 and when she saw E hanging out in the pool of water, she was so excited and said “He’s got a ‘penus’ just like Daddy!” and B said, “Now everyone knows my secret!”) It’s so much fun to hear E tell the story of A‘s birth, even though he wasn’t even a blip on the radar. (She pooped great gobs of green meconium all over me minutes after she was born.)

A appropriately wanted to be with friends today, but we got to go together to the motor vehicle bureau to get her picture license. It was a cool rite of passage. Afterwards I picked up her car from school and took it away for a couple hours and put a few surprises in it, which she will be experiencing just about now. I’ve spent the rest of the day preparing her chosen meal and thinking about her.

This is one of those times when it seems that all the constillations have lined up in the right order. Radiation ended yesterday. A‘s birthday today, mine tomorrow, mother’s day on Sunday. Whether it rains, shines or blizzards, I’m happy. I met with my herbalist yesterday and am now on new herbs for boosting my immune system, detoxifying and energizing my body and mind. I will be doing a nutritional detox in a week or so as well. It’s spring, there is new growth as we come out of the time of rest and darkness.

I have thought a lot about our children, our nieces and nephews, the children of our friends and our children’s friends. I tend to get along with kids, and have loved watching all these young people growing up. Many of these people have known me for a long time, so I would imagine hearing of my diagnosis and seeing me change before their eyes might have been challenging to some degree or another. Seeing me vulnerable has made some others feel vulnerable, if that makes sense. In spite of learning that someone they love had a life threatening illness, in spite of my ups and downs, being tired, losing my hair, not being able to participate to the extent I usually do, they found strength to greet me with smiles, hugs, cheers, chats. Some broached the subject by asking to feel my head, or how I was feeling, or what it was like to have cancer. Some treated me like nothing was going on and this was wonderful. I want to thank all the young people in my life and in my children’s lives for keeping things moving along when our family was in a sort of limbo. This has been a long 9 months.

B had mentioned in an entry long ago that the timing of diagnosis and treatment was similar to that of our pregnancies. Childbirth for us was an amazing and energizing affair. Bringing these lives into our lives and learning together has been such a treat for us. Breast cancer diagnosis, treatment and now recovery is and will be a learning together. All of our supports are learning with us as well, still checking in, letting go of committments they took on to help us through with tenderness. We all have changed because of this. Birthing day, indeed.

30 seconds left

I went to book club last night with women who have been among those at the head of the stampede and who have been flying with the angels. My intention was just to say a quick hello, I hadn’t finished the book, and I’m kinda tired. I left after an hour and a half. (a quick hello) As I left there was cheering and chanting (Ok, maybe not chanting but at least ONE was saying “30 seconds left…30 seconds left…”) This group has held me and carried so much of this with and for me.

When someone says “You have done so well through this…” I look back and would agree. I must say, however, that we had a matrix of support. I’d just change that sentence to say “We have done so well through this…” There will be plenty of time for me to reflect. If you’re still reading along, there will be more soon. As for this weekend, I’m going to enjoy A‘s birthday tomorrow, my twin brother’s birthday Saturday (OK, it’s my birthday too!) and Mother’s Day on Sunday. There’s nothing like the feeling that this part of treatments will be over today and I have a weekend of celebrations. Even if I just sit in the peace of my home.

If you want to count down with us, I go in for my last booster at 1:00 EST. We’ll start at 30…29…28…27…

My first haircut

A was born with a head full of dark hair. She had her first haircut at about 6 weeks to get it out of her eyes. E had less hair, I’d say his looked like mine does now at about 9 month or so. We were not the parents who saved locks from the first hair cut. I was sitting in the salon chair today and thought about this as I picked up a bit of my hair that was cut off. It was incredibly soft. The woman who cuts my hair has been doing so for a really long time. She survived breast cancer, double mastectomy, repeated unexpected surgeries…like 4 + years from diagnosis to final surgery. What a trooper. She’s been one of the women-in-the-know that I’ve mentioned before. She would not take money for today’s haircut. Yet another angel. So it actually looks almost like a hair style. That feels good to me. She spent about 10 minutes cutting, and we spent about 30 minutes just comparing notes and catching up after 6 months. Today was actually the first day I felt warm enough to go all day without a hat. It felt great. Oh hairy me. I played the CONGRATULATIONS card today. I got back my haircuts.

I was instructed by Dr. R.O. today to get Domeboro to make a compress for the broken skin under my arm, which has gotten pretty raw and painful. I am to put it on for 10 minutes, let it air dry and put the Silvadene on after, 3x a day. This is supposed to help with healing. My friend L who is another of my women-in-the-know said with compassion that it gets worse before it gets better. I can see other areas where the skin is starting to break down. This was my last regular visit with Dr. R.O. We will have a follow up in 1 month. Post script: the Domeboro really does give some relief, I’m happy to say.

1 minute of radiation left. The cheesebread for radiation staff is cooling right now, the house smells great. I go to see the herbalist tomorrow afternoon for an end of treatment review, maybe a change in my herb mix is in store. Other follow up visits start nextweek.

A cottage by the sea

We were given an incredible gift: a weekend in a cottage at ocean’s edge. A bottle of French Champagne waited for us in the fridge with a note of ‘Happy Anniversary’. A was able to be with friends and drive herself to and from work, E stayed with a friend near by, B and I left enough food for the katz and fish and headed east on Friday. In no time at all, we drove over a one lane wooden bridge and found an incredible retreat. We are humbled by the generosity of R and G who shared this incredible place with us. Thank you both so much.

The conversation was unencumbered by chores, work, life stressors. It was a wonderful way to reacquaint after 2o years of marriage, if you know what I mean. I was with my life companion and it was just us with zero responsibilities. We didn’t even plan our schedule. We just threw what we had in the cooler and went. We talked and laughed, napped and watched wildlife. We read and napped, laughed and walked. The ocean air was the elixir we both needed to exhale fully and fully enjoy each other.

As we sat on the deck overlooking the Atlantic, I realized I had 2 minutes of radiation remaining. Now that they are doing only the booster, it’s a 30 second ray, I’m in and out in no time. Today was treatment #30, believe it or not.

Updates on my skin: at this point the skin under my arm by my upper ribs is extremely burned and a dark layer of dead skin has formed. (Attractive, I know.) Some of it has peeled off. It looks painful with the tender pink underbelly exposed. It feels painful when I move, so at night I have a small pillow wedged in there, which really helps. (The pillow made by a sweet friend of A’s. She made it out of a tie dyed shirt she had made with us many moons ago!) All of the treated area feels rough and at the same time it is tender, it lacks sensitivity. There’s really nothing to make it comfortable. It feels very tight. I have to wear a layer under my work shirt to absorb the Silvadene. Normally this is not a problem at all, but something happened yesterday and it suddenly has turned unseasonably humid here.

I was trying to describe a hot flash to B on the way to the cottage. I was having one and there was apparently an observable urgency to my stripping down to balance the flash. I said something about not having the word to describe what it felt like and B said “like you’re going to burst into flames?” and it struck my funny bone. It really did feel like I was going to combust, right there on Route 27 south.

Life seems actually pretty normal right now. Sure I’m a little sleepy at times. Schedules are relatively routine. I’m really looking forward to fewer appointments.