Ruminations – Riding a new Horse

Reflections on a theme

P: As we wind down, we wanted to put our thoughts down about whatever we are thinking on this side of things. Now that I’m in my flow again, I’m asked quite frequently how this has changed me and us. A said “It hasn’t really changed us. We were really lucky to be a good family before and to stay a good family after.” B says “It can’t not have changed us. Something to do with a tension or balance between being stronger and at the same time, being aware of the frailty of our lives.” E said “I can’t say no because it’s kind of one of those experiences that you don’t just shrug off.” I don’t know what to say. I appreciate the question and do my best to give the answer time when I’m talking with those interested. I could probably spend a weekend answering the question. I think all of the responses above combine how I feel about it all. I and we were very fortunate to have a foundation of whatever A means when she says “good”ness in our tiny family and our love extensions. I mean, WOW when I say that the love penetrated the walls of our house and our hearts. If I feel changed it is so largely because of what we witnessed and received as we were going through it all. (Please see my last entry which I will eventually post entitled ACTS of KINDNESS.)

When I see my scars, the tiny tatoo markings used to direct the radiation (which I’m seriously considering changing into something more meaningful…), the rectangle of different colored skin which I put lotion and aloe on every day, my nails which may never fully recover, when I examine my chest wall on the left side and my healthy right breast, when I find myself playing with my curls during a really good day dream; sometimes I indulge in an “oh yea” moment and sometimes I just look at something shiny and move on.

B: P has asked me to de-brief as we wind down this blog. First, I cannot express the depth of my appreciation for the folks who cooked for us, for the folks who gave our kids rides, indeed for all the varieties of generosity that was heaped and poured on us.

For, partners of someone fighting a cancer fight I have some observations about how I should have handled certain things differently. The intensity and focus to keep our lives as “normal” as possible was huge. Indeed, I achieved too much velocity… perhaps, a better metaphor is trying to land a plane on an aircraft carrier. Maybe, it is more accurate that I came in for landing attempts with far too much speed. I’d say that I’ve now crash landed after numerous attempts at more elegant but too fast landings. Partners be aware that a part of you withdraws from the person fighting the disease, particularly as the bad news or complications pile up. After treatment ends it is hard to extend those parts back into the relationship. Nine months was about the point where I did start ripping heads off and shitting down necks. I found myself in customer service situations where poor service was rendered and just about wanting to destroy the organization. For me nine months was my wits end. Find those things that replenish you and do them, but, be very careful in identifying them, be certain they replenish.

We are apparently out of the woods so far as P’s health is concerned the Drs. all give us positive results and optimistic prognosis. And I think I’m going to bank that. It is time for P and I to sort out what a new normal is and I’m glad that we get to do that.

P: Thank you ALL for keeping the faith and checking this blog, as the entries were posted farther and farther apart. It really touches me that you kept checking. Thank you for all your support, encouragement and love. If you can hang in for another few weeks, you won’t be disappointed.

Was I in denial?

Since I have not gotten things together yet for my and our final entries, I still have some thoughts to share with you. I was out for a really cold walk yesterday morning, even my eyebrows froze! Walking always gets me thinking. Some things happened this week, like the stars aligning or whatever.

First I finally got around to listening to a December recording of “Fresh Air” with Terry Gross. She was interviewing Dr. Marisa Weiss, a breast oncologist who was diagnosed with breast cancer in April of 2010. I was, at the time, most interested in what she was saying about nutrition.

Then I was sent a link to CaringBridge.com to visit a website for a colleague of mine who was recently diagnosed with colon cancer. He spoke about immediate changes he was making to his diet in his first entry.

THEN on Saturday I was working in the commissary at the ski lodge and I saw someone who I have not seen since last year. She said “Have you always had curly hair??” and I let her know it was post chemo hair. She was shocked. I have not verbalized that in a while.

All this got me thinking about how I’ve sort of gotten back into my old saddle almost like the past 18 months never happened. What a crazy feeling that was. I dug out my copy of ANTI CANCER a new way of life and began to re read it. Back when I was first diagnosed, my chiropractor recommended that I speak to an elder in the field who had his own experience with cancer. He recommended this book and said if I could not come to see him, this would be the next best thing. I looked through it, read some and put it away. That happened with a lot of the literature I was given at that time. No energy or concentration to absorb it all I guess.

I decided to run another detox week and spoke with B about my desire to learn more. I indicated that being on a separate eating plan from the rest of my family was not appealing to me and you know what he said? He told me that it wouldn’t hurt any of us to change the way we eat for the health of it. Just what I needed to hear.

The author of the Anti Cancer book is an MD PhD who was doing brain research. He and his colleagues did scans on their own brains for research purposes. They found a tumor on his brain basically by accident. The book was published in 2008 and he was reporting 14 years cancer free at that time. He did extensive research on the subject and has a list of recommended foods for those who had specific cancers. His premise is basically to strengthen the immune system with the right nutrients to fight off specific types of cancer.

SO, I’m 2 days into my detox, which is a good way for me to essentially reset my food intake. We have a relatively new market near by which features locally grown and organic produce. I’m going to scoot in there this week to take note of what they have to offer. I usually purchase organic when I can, but I’m feeling like I need to get more consistent, especially with whatever source of protein I choose. This will be somewhat of a financial challenge, but we’ll just have to deal with it.

I wanted to put my thoughts on the subject down. It’s so easy for me to not look back or remind myself that I had cancer. While I move on, I want to remain mindful. I don’t want my body to be a good host to cancer cells. That’s for sure.

Compartmentalization

I think that has to be one of the longest words that I actually use. (I mean, who REALLY uses antidisestablishmentarianism?) I have used “compartmentalization” in the course of my work in the mental health/substance abuse field. I have observed and tried to help others who did not have skills to compartmentalize. I have worked with people who compartmentalize to an extreme and have become quite emotionally and mentally fragmented. I have left work many a day, grateful for the fact that some how, some where, I learned to do this. Perhaps my psychological development wasn’t interfered with too much, and just by the natural flow of things, some of us learn to separate ourselves from things in a helpful and healthy way.

I am bringing this up because at this point I’m going on with my life. Even when I put aloe on my radiated skin, and massage my scar to avoid scar tissue, it’s like it’s just part of my day now. It does not act as a trigger for bad memories or fear. Even when I have to choose every day whether or not to wear my prosthesis, it’s just part of my routine. I have been at a softball tournament most of this weekend, with lots of people. I am one among many cheering our girls on, making sure they have enough to drink, refilling the coolers with ice. I WAS more vigilant about keeping sunscreen on my shoulders, arms and neck, and happily left the fields at almost DARK without a rash or any irritation.

I suspect that living with the identity of a breast cancer survivor, for some, could be the constant reminder that I want to avoid or ignore. There are things that have come to light for me. Oh, you know, the stuff that we all take for granted. I hate to sound so cliche, but this is something that HAS come to the forefront for me. There are just some things that are not worth the frustration any longer and there are things that I just do not want to let slip by. Life IS too short to hold on to things that can get in the way.

I think I’m eager to get this tucked away for many reasons, not the least of which is my children. They have done such an incredible job with this in their lives. In my mother-teenager relationships, I am learning a great deal. A has taught me that she is very capable of taking care of herself and that she will ask me for help if and when she needs it. Hovering and commenting does NOT help the relationship at all. When she wants to be near me, she comes over. When she wants a hug she asks for it. I am welcome into many conversations with she and her friends, but I am careful about that timing. I have people I call friends to help me with my emotional needs. This is not my child’s job. I know this is not how all people think, but it seems to be working really well for me and my relationships with my kids. After E returned from 2 weeks away, of course I wanted to comment on how much deeper his voice was, I wanted to look him over, ask a million questions. These were MY wants, not his. He has clearly told me that interrogation is a sure fire way to shut him down. I have to learn to listen better to what they are telling me. In our teenagers’ individuation, I am learning to let them go. They both still come for a snuggle or a conversation, and these are the times they are telling me they are open to a certain degree of me being a mom. And being a mom is such a privilege for me. The word friendship just doesn’t capture that relationship in my life. As I move forward, I’m really trying to observe their process more and get out of the way when I can.

I don’t claim to have any corner on the market just because I’ve dealt with cancer. My hide has been tanned, so to speak, and I wear a new skin. I do not want to wear the ‘survivorship’ badge as a reason to be treated differently. I have not been traumatized. As I tuck this year’s experience into its capsule, I want to be careful to try not to let each follow up screen or test prick a hole in the capsule. Each forward event is an experience on it’s own, and any baggage dragging behind me will only weigh me down.

I feel like I’m all over the map with this entry. Any thoughts are really appreciated.

First day with that new breast?

I guess it was mid day before I stopped looking down and checking myself out in whatever reflection I could find. I was fairly symmetrical for the first time since November 10^th, 2009. To be honest, I don’t know if I’m more self conscious right now with or without a breast on the left side.

I went to see the “fitta”, the other day. She has been doing her job for over 20 years. She’s worked with women who’ve had mastectomies, lopsided women, children/teens with physical deformities, some girls who are not able to grow their own breasts (i forgot what it’s called). Her office is located at the Breast and Osteoporosis Center at the hospital. She also works with girls, teens, women who have perfectly formed breasts too. “I was so impressed when Dr. ‘Smith’ referred one of his patients to me. The woman didn’t have a heart attack, she was wearing the wrong size bra!”

The “fitta” really takes pride in her work. Her largest project was a 54 LL or something like that. She knows that a 38B might do better with a 40A, it just matters on the bone structure, broadness of the person’s shoulders or other anatomical anomalies. She has a whole back room full of stuff from the most plain to the most lacey. It didn’t take her long to find the right style and size for me. She told stories that were like the “What Not to Wear show” in bra-land. She could be a stand up comic in my opinion. Amidst the hysterical stories, she also shared some very very touching stories that still bring tears to her own eyes, especially regarding one special needs, very deformed young woman who couldn’t stop looking at her new shape and who left her office with a huge smile.

She asked why I waited so long to get fitted. She usually sees people as soon as the mastectomy incision heals, saying that she recommends that timing to help prevent the body from adjusting to the loss from a weight balancing perspective. She’s more concerned about what others think than I am, and that was another of her reasons for getting a prosthesis soon after surgery. I explained that I just didn’t feel ready to make the decision until I felt physically and emotionally healed from treatments. She said adjusting to a prosthetic breast might tire my body out so I might want to work myself up by an hour each day. Her recommendation was to wear it every day once I got used to it. She said that she had her breast weighed on a mammogram machine. She was 140 pounds and the breast weighed 5 pounds. This is enough to affect balance and muscular/skeletal health.

I picked up a couple bras, the prosthesis and a tank, all of which will be paid for by my insurance (there is coverage throughout the rest of my life for a certain number of bras each year and new prostheses every so often), and I paid for a new bathing suit. The garments have pockets to hold things in place. I walked out of there with a body hugging black tank top on like I was ready to show off my symmetry to the world. The self consciousness didn’t come until the next morning. From the P’s eye view, it’s not really a perfect match, but from the knowing observer’s view, it looks pretty convincing. From the view of someone who is not aware of my journey, I suspect there would be minimal curiosity spawned. I mean, how much time does anyone spend comparing left to right as they take in the human form? Also, I’m not sure how symmetrical any of us are anyway.

I’m reminded of the experience of moving to Hartford and then to Washington DC. I was not aware of how pathetically inexperienced I was in the land of race and skin color and had never really felt in the minority before that time. Perhaps a bizarre connection to my experience now, but I have not really been overtly breast conscious in the 47 years prior to this experience. Other than my experience in figure drawing classes, I had not really paid too much attention (from an aesthetic point of view) to the symmetry or shape of others’ breasts unless they were spilling out in front of me or were so big that I felt my back ache in sympathetic response. When I started walking for fitness again as the weather got warmer and warmer and my layers peeled off, I didn’t even think about my asymmetry. We walk at the golf course in the early morning when the landscapers and mowers are out in force. I was told once that it’s none of my business what other people think of me. This idea creats a shield for me I think, which protects me from being self conscious as my shape became more exposed. I do think sometimes that this is just the reality of breast cancer. I honestly don’t know what I’d think if I were the observer here. The opportunity has never presented itself, or at least I have not noticed anyone sans breast. There have only been a couple mornings as I’m sweating and walking up and around the course that I’ve noticed my consciousness of my form, but this doesn’t happen too often, nor does it linger or stop me from doing my thing. I honestly don’t think most people notice at all.

Anyway, I went to work the next day complete with insta-breast. As one might expect, as the day wore on, I became less and less aware of my special circumstances. I can credit this in part to a fabulously fitting bra (thanks Rhanda). I was not particularly fatigued or anything, having endured the whole day in my new contraption. For the first time I felt like I was wearing an over-the-shoulder-bolder-holder.

I resisted going into every colleague’s office asking for an assessment. BUT toward the end of the day, I did go into B’s office. She’s my fellow snowman loving friend. I pranced in, chest out and asked what she thought, as I twitched toward the left breast as a hint. She was fairly impressed. I mean, what are you supposed to say when a woman walks into your office asking you to look at her breasts and comment?? I was a good dube and kept my professional boundaries by not asking any male colleagues for their opinions.

Initially it feels in the way when I carry books in my left arm (Statue of Liberty style). It’s soft and all, but there, of course is no sensitivity. (It reminded me of lying on my stomach while I was pregnant. Something that hadn’t been there was there now, and it took some getting used to.) I was interested that I felt some, oh, I don’t know, grief or like I was this imposter or something. It didn’t linger, but I want to be honest about the experience. I had the “oh yea!” feeling as well, like, I think I remember what it was like to have one of these on that side, almost a familiar feeling of normalcy or something. What a mixed bag. By the end of the day, I was as oblivious to it as I could be on day 1.

I have to remember the reasons I chose not to get reconstruction immediately, and the reasons I still do not want reconstruction. This choice has worked very well for me so far. Being a rookie in the land of prosthetic breasts, I am, thus far, feeling good about the choice to get fitted. Some things just fit better. Shirts with buttons hang straight now. (Really!) The large majority of bathing suits are made to mold around breasts, even tiny ones. Sometimes I may just want to be balanced. I like that I have the option. I like that in the short time with this new companion that people have not even noticed anything. That’s the best feedback I could ask for.

War of my life

I was walking by myself the other morning listening to music. The song below came on and resonated, hence today’s thoughts. (Not the best video, but I like what he says at the beginning and how intimate the venue was for the performance.)

I just went to the mail box and there was one letter in it. It was from my PCP, the form letter that starts with “I’m pleased to inform you…” Pap was negative. And so we are off to a good start on the observation of endometrial tissue. I was trying to come up with a good analogy here, and reconnaissance came to mind (thanks to B‘s infinite supply of words). Reconnaissance is a mission to obtain information by visual observation or other detection methods, about the activities and resources of an enemy or potential enemy. The song is called War of My Life.

I would imagine it is interesting hearing a G.O. say that she feels like she is in the war of her life. I’ve been asked by several people over the past few weeks what’s changed for me because of all of this (diagnosis of and treatment for breast cancer). I’ve noticed that I spend a lot of time just blank, probably looking like I’m formulating some profound answer. Nothing very profound comes out in my opinion. I am still going through life fairly happy. Whenever I do something that is not in the ‘how to prevent cancer’ literature, I pause and sometimes feel like a weak mortal who can’t even save her own life. Whenever I do something that IS in the ‘how to preven cancer’ literature, I wonder if I can get extra credit if I do a little more. You know, if you eat a big mac with a diet soda, can’ t the diet soda cancel out the fat in the big mac? If you say no to ice cream cake at the office, can’t your body “roll back” that many calories for the day??

I do feel like there’s been an intrusion. The cellular integrity within my system has been breached. A foreign army has come to the rescue to kill the damn soldiers that brought dis-ease to the bod. Now I’m trying to evict the foreign army because IT doesn’t belong in here either.

What is left? What residue from the chemistry? What will my body do with the radiation? What will the radiation do to my body? Are there any enemy cells hiding out somewhere? Am I the same person I was?

Well the only question I can answer from that bunch is the last one, with a resounding YES AND NO. Many have said that cancer has a way of coralling the spirit that was already present. I’m still me. I know the glass is half full. I don’t give up easy. I suspect having crossed the cancer barrier I am different. The cancer didn’t hurt and through the point of diagnosis I was not feeling sick from it. The treatment we chose for this was harsh and made me sick. That was a battle I and we chose to fight.

Before this I was doing things fairly intentionally, but did get carried away when a shiny object sparkled in the distance. Now I am doing things fairly intentionally and really enjoying the sparkly diversions. Someone I have not spoken to in a long time called today and APOLOGIZED for not knowing what I was going through. She and I made a date for lunch and she asked if my full time job could allow such a thing. My response was that it will allow for such a thing because I’m not going to miss out on shiny opportunities. I remain grateful for the job I have which can afford such an arrogant posture. Really.

I do feel like my body is now on hyperalert for UFOs. I’ve got the Angel Brigade and there is a new addition to the parade of ghosts that marches in my wake. For me the ghosts have to do with the compromises I and we’ve made in order to evict the cancer. The ghosts know how sick I got from AC. They know what people who love me had to witness. They remember what it was like to get a breast amputated and to hear that nodes were positive. The ghosts know how hard it was to confront hair loss and live without it for over 6 months.

I’ve said it before. It is what it is. I’ve got no choice but to fight and I’m not going to roll over and play dead. The Angel Brigade (that includes any readers of this blog) was and is my army. I am permanently enlisted in your army as well if you’ll have me. We all have something to fight for. Here is a quote from a magnet that my kat loving friend D sent me during the battle:

I do not think we know our own strength

until we have seen how strong love makes us.

Come out angels, come out ghosts
Come out darkness, bring everyone you know
I’m not running and I’m not scared
I am waiting and well-prepared

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run

I’ve got a hammer and a heart of glass
I gotta know right now which walls to smash
I got a pocket, got no pills
If fear hasn’t killed me yet, then nothing will

All the suffering and all the pain
Never left a name

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run
I’m in the war of my life, at the core of my life
Got no choice but to fight ’til it’s done

No more suffering, no more pain
Never again

I’m in the war of my life, at the door of my life
Out of time and there’s no where to run

So fight on, fight on everyone

So fight on, got no choice but to fight ’til it’s done
So fight on, fight on everyone
Got no choice, got no choice but to fight ’til it’s done
Fight on everyone
So fight on

No news IS good news

Before I knew it, it was almost 2 weeks since the last entry. I saw a dear, fellow snow-loving friend at work who said that she checks the blog every Tuesday and Thursday and was so excited that there were no entries because it must mean all is well. (There’s a G.O. if I ever met one.) Indeed. Thank you all who are still faithfully checking. My plan is to keep this blog going at least through my meeting with the surgeon at which time we will review the mammogram I am to have this month. I have had more thoughts and believe this is still the forum for them.

Well a quick update is in order. I had follow ups with both oncology and radiation oncology last week AND my annual PCP visit. Bone density is NORMAL. Liver funcitons are NORMAL. Blood counts are NORMAL. I have not heard about my Pap results, but they said I’d get a call if there was a problem and a letter if there was not, and I have not had a call…yet. Oncology wants to order a CT scan of my torso and pelvis before my next follow up in 3 months, just to monitor activity on my liver where something showed up in the early CT. The follow up PET showed nothing.

When I spoke with the radiation oncology PA, I learned that the radiated skin now has something I will call cellular memory. If I go out in the sun without SPF 50,000 on 🙂 the pink rectangle of radiated skin will emerge, even if that particular part of my anatomy is not directly exposed. When she spoke about the next radiation oncology follow up, I asked how many different providers I would need to continue to see. Who’s the boss, sort of. I asked the same question to Dr. Oncology. It seems to me that this is another issue that does not necessarily have one path to follow. Basically here’s what I’m taking from this: having 3 or 4 eyes and hands on the issue (or the TISSUE to be exact), is not a bad thing. I can spread out the visits so if I have them every quarter, a different provider is providing input. Not a bad thing, but it opens me up for confusion and differing points of view. I NEED A GURU! Ok, maybe not, but I do have to think about what I want to do with all of this. For the next 6 months, I’m just going to follow the path. Surgeon in July, Oncologist in September, Radiation Oncologist in December. All info will go to my PCP.

5 weeks into Tamoxifen, I’m feeling mostly well. I have a really annoying rash that is not going away along the radiated skin and on my lower left ribs and up my neck. At the follow ups we thought it might be just the pathway out of radiation, but I’m reading that it can also be a reaction to tamoxifen. Because it’s so localized, I’m not so sure it’s from Tamoxifen, but if it’s still driving me batty on Monday, I’ll give Dr. Oncologist a call. I was offered steroids for it, but you know me, GEEZ. I’d rather have needles stuck in me…in fact I have an acupuncture appointment this week. For now silvadene at night and cortaid during the day seem to work fine.

On the subject of the PORT-A-CATH. I left the oncology follow up without remembering to ask, so I called and left a message, simply wondering what is to become of the thing that has been so incredibly helpful through all of this. The perdiem nurse who was in that day called back and said ‘if you want it out, Dr. Oncology said it would be fine to get it out now.’ Since then, I’ve thought about it with the 3 month CT scan in the future and wondered if I should at least wait until that point. Two days later I received a call from Dr. Oncology’s regular nurse who said that some people leave them in for years and years. She recommended waiting at least one year before considering removal. I assured her that it is not causing me problems. Going to have it flushed (every 4-6 weeks) is not a problem either, just remembering to schedule it might be challenging, not impossible. The thing that is most on my mind is that it is and has always been a bit troubling to A and E. Neither of them have liked the bump in my skin from the day it was put in. A reminder of the need for pretty serious medical intervention. This will be something I talk about both with Dr. Surgeon and Dr. Oncology, inviting myself into the known potential conundrum. I’ll keep you posted on that. For now, the port-a-cath will just continue as part of my anatomy.

I am still showered with complements on my hair. This is from people who know me and are fierce cheerleaders AND from people I’ve never seen before. A cannot stop herself from just constantly running her fingers through it. She thinks it feels really cool, which it does, I have to admit, from the inside AND on the outside. But after one of her indulgent head massages, I feel like I should look like the guy on Eraserhead. IF you have not seen that movie, DON’T bother. You can just imagine what the main character looked like with a name like Eraserhead. The hair growth itself continues to thrill me to no end, and it is really amazing hair. Dense, thick, curly, all different colors. Because of whatever is happening with my estrogen, I’m kind of fuzzy on my jaw bones too, which is just another thing to marvel at in the marvelous petri dish that is my life. I’m not the bearded lady, mind you, but it’s there.

Art work? Not much. I am active. I’m walking, gardening and doing stuff outside. Taking time for art is just not what my body wants or needs at the moment. Our garden looks beautiful thanks to the perfect conditions we are experiencing this spring. In fact if I don’t pick some of the lettuce today, we might miss out on some delectable leafy greens.

I have a mammogram on the 22nd. I will write between now and then, I promise. B is wondering if we should start a new blog for the purpose of keeping in touch with those of you who have been so faithful on this site. Neither of us are interested in social networking in the big picture. I’m not so sure how I feel about it. Email works for me. This whole experience of sharing my/our thoughts has done more than serve the purpose for which we created it, and I’m really happy about that. Obviously I have no idea where it will go from here. Comments about that would be really helpful.

Two entries in as many days. Wow, I better not strain myself!

For the love of Nancy

You may recall that I had been visiting my 84 year old friend during all of this. Well, Nancy’s life ended last night and it was on her terms. If we all could be as ready as she was and have our wishes known and followed as hers were, I, for one, would be very grateful.

I visited Nancy after shaving my head. We were having tea and she looked at me after a steaming sip and reached out to touch my head. “You have a perfect skull, you know, not everyone could pull this off.” Some days when I came to visit she was still in bed, and one time in particular I leaned over her and said “Good morning Nancy!” and after she opened her eyes and realized who had the nerve to interrupt her slumber, she smiled as I took off my hat. She raised her hands to rub the stubble, eyes closed, and said “my friend with the perfect skull”.

Our visits were not particularly long nor were they as numerous as I would have liked them to be, but they certainly were intentional. Every gesture and word was intentional. Nancy sometimes struggled to get her brilliant thoughts from her brain to her mouth and sometimes it just took time to accomplish the task. There was no haste to make waste. I found myself listening intently almost so hard that I got caught up in the visual of her mouth trying to form the words and would miss the point. She was very forgiving anyway, so when I said something in return that was totally out of the ball park, she moved right along with me. Bless her heart. She was incredibly thoughtful and supportive of my ups and downs during my own treatments, and certainly saw me at vulnerable moments.

Nancy lived with her daughter, my dear friend S, since well before I was diagnosed last summer. I had been granted cart blanche with regard to visits. This was such a gift to me. S was very generous in sharing her mom. In addition to what I’ve already shared, there are three specific memories from those visits that I want to write about. I had the priviledge of not only visiting, but taking care of Nancy for a couple hours one day. We took care of her needs, had our tea and conversation, and decided to get outside. It was a beautiful day. We wheeled her chair out the long dirt driveway and one of the cats jumped right up on Nancy’s lap, muddy paws and all. She loved it. When we got back to the house, she said that she needed exercise, so we took the walker out and made a lap around a small area in the driveway. At this point in Nancy’s life, walking was a chore as she could only really move her feet maybe 4 inches with each deliberate step. She made fun of herself as she walked along because she had to concentrate so hard that she lost track of the position of her body, and would find herself bent at a 90 degree angle before too long. Well, we were walking up the ramp, Nancy was at about a 98 degree angle and stopped for a very long pause. She finally said “what on earth is that?” I got on my hands and knees, trying to judge the path of her sight to find whatever it was that caught her eye. I could not believe it when I saw it. In the crack of the deck board, there was a tail of a mouse, something one of the cats apparently had left as a gift. We laughed and Nancy said “OK, now, look at me. I have completely forgotten how to straighten up.”

On another occasion, I dropped by unannounced. Nancy was sitting in front of her beautiful old wooden blanket chest and was polishing it. S was guiding her hand along and they were talking and laughing. I loved seeing this because it epitomized their relationship from my perspective. S was a fierce advocate for her mom, and seemed to provide as many opportunities for her as were possible, even something that seems so simple like polishing a cherished piece of furniture. That visit Nancy was working to say something as we had tea. She was pointing to her neck and finally grabbed a gold necklace that she had on. She communicated to S that she wanted S‘s older sister to have that particular necklace. S always took note of these things, and reassured Nancy that she would be sure that her sister got the necklace.

On one of my last visits to the house, Nancy was sitting in her recliner by the window. When I pulled a chair up snuggly close and leaned over to give her a big smooch on the cheek, she said “you know you are ‘myfriendpatty’, it’s all one word and I want to be sure you know that”.

Last Sunday, S and I visited Nancy at a nursing home she was admitted to about 4 days earlier. She was sleeping when we arrived and when I greeted her I said “hey Nancy, it’s yourfriendpatty”. We had a great visit. We got her ready for the day and had breakfast. Working with S to get her ready was amazing. She knows her mom so well. She put the T in TLC. Nancy was contemplating reality and asked on several occasions if something that just happened in her mind was our experience as well. I knew from conversations with S that Nancy was ready to exit the body that was just not working any more. She’s been ready for quite some time, actually. Sitting here today, I feel very fortunate to have had that particular visit with her, only 6 days ago.

The next day S called me and told me Nancy was on her way to a Hospice house. Something had happened, and Nancy was able to give full consent for NO medical intervention. S said she was very clear with the doc that she knew that it would lead to her death.

I visited Nancy the next day at a beautiful Hospice house where the doors are wide enough to wheel hospital beds out into the gardens. Nancy was in bed, fairly sedated. When I bent over and gave her a smooch and told her that herfriendpatty was here for a visit, she opened her eyes and her breathing haulted for a moment, it seemed that she recognized that it was me. S‘s family was very kind and welcoming, even in their private grief, to make room for so many who were able to come to say goodbye. While I was there S took Nancy’s necklace out of her pocket and gave it to her sister, just like she’d promised.

The last time I saw Nancy, she was resting fairly peacefully. A friend was playing the harp for her. I held her very warm hand, stroked her hair and told her a few things I wanted her to know. Less than 24 hours later, S communicated that Nancy was finally able to make it out of the body that could no longer house her vital spirit, with her grandson reading poetry (Yeats) to her as she left. S just emailed the end of the poem:

For he comes, the human child,

To the waters and the wild

With a faery, hand in hand,

From a world more full of weeping than he can understand.

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.