6

This is how many more radiation treatments are left. Today was a ‘super clav and breast boost’. For the super clav the machine is in two different positions, up about even with where my arm meets my body and in back in the same general area. Both of these shots were done all through the radiation, but now the direct shot to the whole area is omitted. The other was the boost which was a longer beam, about 30 seconds, right to the scar. The machine is closer and the attachments and template they snap in place bring the contraption to within about an inch of my body. They are very good about checking in as they put it all together. I’m pretty mellow yellow so it does not bother me. If someone tends on the ‘I need more space’ side of things, it might feel a bit tight. The room is really big and open, it’s just the proximity of the machine to the body that might be tough to take.

I asked how the beams from below the table get to me. They took the sheet off the table and showed me that it is made of carbon fibers which the beams go right through. It looks like plexiglass. The cradle is also made of carbon fibers but is not a clear material. Basically a lot of things are made of such fibers. So as I lie there the great arm of the machine rotates 180 degrees to beneath the table. That area of my body, the area around my scapula on the left side, is just a bit red now. I’ve put stuff on it throughout the treatment. The beams are definitely longer and stronger on the front side. The super clav and breast booster treatments go on through Friday, and then next week is just the booster on the scar area.

Already the R.T.’s are talking about “just getting to know someone and then having to say good bye”. It feels similar to my last weeks of chemotherapy. Out comes the cheesebread pan for a treat. Maybe Tuesday. I really want my favorite people to be there, and it’s the day of the weekly doc visit.

I’ll be writing more soon about the metabolism of a cancer diagnosis. It’s something I’ve been finding myself in thought about a lot lately. There’s probably a bunch to say, so I’ll save it for it’s own entry.

Today I’m not too tired, really. I am resting at home, just having gotten off a phone conference. One kat is on my left leg. Another is under my left arm with his head on top of my hand on the keyboard. Another is moping somewhere because there is no more surface area available upon which he could fit. It’s a rainy afternoon. A perfect day to be under katz with the end of active treatments in clear view. B and I are planning a weekend getaway to celebrate our 20th anniversary. The timing is excellent.

“You’re in the home stretch”

I woke this morning, pretty much every part of me ready for the day except for my eyes. I realized this as I was driving to work. They just felt better closed than open. I’m a little more booked at work than I was a few weeks ago, preparing for yet another new staff person. Thus, my schedule is less flexible in the mornings. I thought twice about whether I wanted to just turn around or proceed. More and more I am hearing squeals of delight as my cheerleaders observe my hair growth. I’ve shed the scarves and am wearing cotton watch caps curled up over my ears and my hair is peeking out everywhere. If I were asked to describe the way I look “elf” would come to mind. I’m truly enjoying it. If SOMEONE ELSE were asked to describe the way I look, well…who knows what they’d say.

I chose to go to work, and made it to most of my appointed meetings on time. More and more I’ve vowed NOT to do business on the phone while I’m driving, but today I had two orders of personal business to tend to and I just didn’t know when I’d get them done. SO I accomplished that on the way to radiation. When I got there I was really quite happy to put myself in the cradle and close my eyes. The radiation therapists were wonderful as always and we spoke of gardening. They voiced incredible compassion when they saw how purple an area under my arm had gotten. One of them asked what I was using for ointment and I told her Silvadene. She said “Oh good, put it on like frosting!”

Incidentally, Dr. Radiation Oncologist prescribed Silvadene last week and instructed that I use it until our follow up 4 weeks after radiation ends. This is the ointment that some burn victims use to prevent infection and promote healing of severe burns. I’m happy to say that my skin is not broken yet, just very red and tender. Dr. R.O. instructed me to put the salve on like lotion, maybe a little more, but not a thick frosting. It does feel better when I apply it.

After radiation, I had my weekly meeting with Dr. R.O. who was just so pleasant. After receiving such nurturance from the R.T.’s and hearing his encouraging words (title) I felt like I kinda woke up in the land of happy people. I suddenly remembered a question I wanted to ask him but kept forgetting. “If someone had reconstruction at the time of the mastectomy (an expander), do any complications arise with radiation?” My understanding of his answer is this: it can cause problems and result in more plastic surgery. Basically one issue can be that the skin tightens due to radiation. (I can attest to that, for sure.) If an expander is put in for the purpose of reconstruction, the effects of radiation can complicate the process of skin expansion. Like me, some women may not know if radiation is in the picture at the time they are making a decision about mastectomy and reconstruction. I’ve spoken to enough women to know that some of us just want something in the place of the removed breast after mastectomy. This might prevent further inquiry about the possibility of radiation and how this could effect the skin expansion process in preparation for an implant.

I still feel very very good about my/our decisions. I can really empathize with those who choose immediate reconstruction. I hope anyone faced with this very difficult decision is fully informed about the possibilities for their own treatment regime, to the degree that this is possible.

SO in addition to this conversation, Dr. R.O. and I spoke about the last bunch of treatments. Tomorrow through Friday they will focus on my clavical and scar, and the last 4 treatments next week are solely on the scar using the form they identified in the last verification. That means TODAY I received the last rays to the whole quadrant. SO some of me is moving into recovery mode as of tomorrow. YEEEHAAWWWWWWW. GiddyUP girl!

We briefly spoke about the fact that effects continue up to a month after radiation at which time I should start feeling an upswing in the energy department, gradual though it may be. I mentioned our summer plans to go to Alaska and he said it is a place he would love to live, but, like Maine, there just isn’t radiology in places like Sitka. I told him if I ever needed radiation again, I’d send for him, even if I happen to be in our Last Frontier. As much as I truly enjoy him, I hope I never have to call upon him when our follow up visits are over.

I drove home grateful for Dr. R.O., grateful for the Radiation Therapists, nurses, grateful for Dr. O., my favorite nurse K, the volunteers. These people save lives and make those lives that cannot be saved more pleasant through their dedication and kindness. I remembered that my eyes were tired and pulled into my driveway and closed them for a moment or 2.

When I approached the porch this is what I saw:

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Another angelic delivery. They have been swarming again. Several days each week for the past 3 or 4 weeks. Someone shows up right around supper time, or a dessert and bouquet of daffodils magically appears on the counter in our kitchen. Something as simple and comforting as chicken rice soup or as decadent as goat cheese lasagne and tirimisu. We are loved. We have had people running a 9 month marathon with us, hiking a mountain with switchbacks around every corner, praying for us, singing songs with us, reading along, laughing and crying with us, supporting us in silence.

I’m tired tonight. Dinner is heating up. 7 more treatments to go.

“Last coat of pain”

I’ve noticed with increasing fatigue that my tolerance for mess at home is decreasing at the same time my ability to flit about and clean is. Why we chose this time to start renovations on a bathroom is beyond me but at the same time, I’m so happy we are continuing with the project. We usually negotiate with our contractor, doing some of the work ourselves. I had the job of priming and painting the ceiling and the walls, and it was time for this to be done.

To get to the point, the original color chosen but not purchased required gray primer. The ultimate color purchased was not dark. Covering the gray primer required more hutspa than the brighter color had. Layer after layer went up as the weekend wore on. I don’t love to paint, but I love it when a new color is added to a room. I never have had problems painting. I have not even minded cutting in. But as each layer was put down, a need for another rose up. I could not get myself out of the way to see that everything would be ok whether the painting was done or not. I was once again up in the bathroom, the last of the gallon in the tray, putting another coat on. I was spitting and sputtering about who knows what, definitely feeling sorry for myself. (This is fatigue in action here.) B came up, brave soul that he is, and I just kept ranting on. An hour later I went up and it didn’t look too bad. He stood in the middle of the room and said something smug like “you just have to trust the paint”.

Friends and I were spontaneously combusting into a gathering the following weekend and I emailed them all saying that I just had to put on the last coat of paint before I could release myself into their delightful presence. I left off the “t” in paint, and hence, the title of this entry. A friend picked up on it immediately, and I just had to laugh. The final coat of paint was less painful than the previous one was, I’m happy to say.

Doing projects like this is so rewarding when it is all said and done. Ripping out the previous bathroom had catharctic potential for both B and I. Seeing the new makes me very happy and the kids finally have a bathroom that they enjoy. Lest I not forget to mention the other outcome of getting teenagers OUT of our bathroom…

I am so grateful for B. When I’m not firing on all 8, he usually gives a wide berth. I may not always get what I THINK I need from him, but his timing can be so right on. I’m rationing my time between work, resting, putting up molding or vacuuming the living room. I call Mom or take a walk with D’s pups while she is away. I remember to stretch my body, put ointment on my radiation affected skin. I was the first to take a shower in the new bathroom. I snuggle up with the katz. I enjoy time with A while E is away on a week long trip.

I am working my way out of this particular trail. 12 days of radiation left. Not too much emotional pain, some annoying but not too intense physical pain. The bathroom and the still in process renovations to the bedroom are symbolic to me. You know, finishing stuff, attending to things I have some control over, letting go of the other stuff. I’m looking at the end of the really invasive and aggressive treatments. I’d like to think of it as the last coat of pain.

Hello eyebrows

I played the CONGRATULATIONS card today. My eyebrows are coming in. It was like yesterday they were not there and today they are. Short, but really SWEET.

We completely gutted our upstairs bathroom and it’s almost finished. SO, I christened the shower. (Took it for the team, yea.) I love to just let my hair dry without any toweling or baseball caps. It is warm enough in our house tonight (or the hot blasts are doing the trick), so I’ve got all sorts of whisps and bits sticking out everywhere. It’s developing some character and I like that. I contacted my hair cutter and sister-in-the-know to see if I can get a little trim. People are all over me with comments about my hair growth. It’s pretty funny.

I find that I’m wearing caps much more than scarves now. I have to remember to protect my head from the sun, my hair is there, but certainly not enough. I’m definitely ready to be done with scarves. Oh, every so often I wear a favorite one, especially the ones that drape onto my back and blow in the wind, but it gets old, you know? I mean, they did me good and all, but what a pain. I never realized that the sound of the cotton scarves rubbing on my collar would travel to the fabric over my ears. Or that my hot blasts would heat up my head so much I felt like the scarf was suffocating it. Or the ones that had too much fabric and the knots getting in the way on the back of my neck. I never needed anything to keep the scarf from slipping because I always had some stubble to act as velcro, so at least I didn’t have to deal with that. Even so, I remain satisfied with my decision not to wear a wig, even with all the whining. I look at the scarves in the basket in the corner now and think that it’s almost time to give them a final wash and return many to the angels who shared them with me. They gave me comfort when I wore them. For sure.

The breast booster radiation will not happen until the last week of treatments. The verification the other day was to get everything ready. Today’s treatment was just like the usual ones. It’s just part of my day, and like I said, it’s as easy to blend into everything else as washing my hands or driving to work. Today was treatment #18, can you believe that one? My skin is tender, when I put my arms in the cradle before treatments, I can feel a familiar tightness in the skin and around the scar, similar but different from the days and weeks after surgery.

This really is the home stretch as far as the intense treatments go. We started on September 9, that first chemo. Surgery was in November. Second round of chemo started in December. Radiation in March. Are we coming to a finish line or the starting line?

Cortaid to the rescue

It can leap tall buildings in a single bound! OK, maybe not.

How about this? It can calm the most unscratchable itch!

It’s CORTAID!

Today was the second verification or breast booster. After today’s treatment, the techs lined up my tatoos with the laser beams and found a template which matched my scar. Basically they added a section to the radiation machine which brought the instrument much closer to me, like within an inch or two. They have templates which are like a thick square plate with a hole in it in the shape of a rectangle with rounded edges. They find the template that best fits the length and shape of the scar and insert it into the section added to the machine. (They’d make a new one if none fit right.) It’s like sliding a filter over a lense of sorts. This will help direct the next treatments right to the scar area. Apparently this the place where reoccurrence happens most often. They assured me that my lungs would be protected in some way. I’ll find out more about that tomorrow.

They drew all over me, encircled the scar and put a clear rigid plastic sheet over it and traced the drawing. They took pictures of the position of the machine. They are very careful about measuring twice. I am so fortunate that most of the techs are really kind and nurturing. They really respect the dignity of the patients. It means so much I can’t even say.

I met with my Radiation Oncologist after all of this for our usual weekly check in. He checked out my skin which was just lit right up with a rashy redness. He said “perfect timing…right at 3 weeks”. This is good, as I mentioned in a recent entry, they are looking for this reaction so they know the radiation is doing what it is supposed to do. When I informed him about the itch and the relief the cool compress afforded me he said “not too cold, not too long”. Definitely not an icepack. “Cortaid should do the trick right now. Stop the aloe, and just use this. Eventually we may have to go with a prescription.” I must say, he has a way, and is very sensitive to the issue.

I’ve got acupuncture on Friday. Until then it’s Cortaid. The Ching Wan Hung does not help the itch. I’ll have to see if there is something else to support the symptoms but not interfere with what has to happen.

Some rest this afternoon. That felt good.

Exhausted

The daffodils brighten up my spirits, but I’m really POOOOOPED. I have no energy tonight. My skin is starting to itch. It’s very bizarre because I can feel the itch, but I cannot feel relief if I rub the area. The chinese salve helps a bit, a cool compress does as well. If the skin breaks down we know radiation is doing what it’s meant to do. It’s tolerable, but distracting right now.

I have to cut back on my ambitions, and I struggle just to let things slide. Maybe I feel like if the outside looks somewhat orderly, the stuff I don’t really have control over won’t bother me as much. Who knows. I just know that I should probably just REST in the afternoons and not try to be a hero, or whatever it is I’m trying to be.

Good night.

Getting things back

When we were visiting family for the holidays in December, I had the good fortune to see a friend, someone who is very much a part of our family. He was undergoing chemotherapy at the same time I was. He told me that he had a story to tell me. I received a card from him recently with the story written out. The card was a congratulations card with a sound chip in it. These goofy creatures called hoops & yoyo are on the front of the card and when I opened the card they said “congratulations!” in chipmunk like voices: “go do more of what you did, more good stuff, more good stuff, more good stuff, more good stuff…we don’t know what it is, but it was good stuff…congratulations!” and it made me smile and laugh. His inscription said “Have a smile today. Keep getting your “things” back!!” He signed it from he, his wife and 2 children.

Here is a portion of the letter:

“I have to keep reminding myself that the physical changes I’m going through right now are just temporary, thus the story of the card. When I first started my treatments back in September/October, I was told of all the side effects that I might encounter along the way. The constipation, diarrhea, mouth sores, hair loss, weight loss, loss of appetite, ability to swallow, voice change, etc…the list goes on and on as you well know. I said to myself bring it on, let’s get rid of this crap that found it’s way into my body. The side effects came, but always whe I was home, never while I was in the hospital. I can’t say that I didn’t struggle with my side effects, but as the holidays approached they subsided and eventually became a part of the past.

As weeks went on, I started to return to my more normal self. (My wife) and the girls can attest to that. And that is the reason for the card.

It was just around Thanksgiving, the girls were home from school, I was doing a puzzle at the dining room table. (My daughters) just got back from the store, needed school supplies, and disappeared to their upstairs bedrooms, only to reappear moments later with big smiles on their faces and a card in hand. I opened the card and almost cried for 5 minutes with them. They had heard of all my side effects, the troubles in the bathroom, my eating habits among other things, and in the card they assured me that what I was experiencing would be temporary, that I would soon be my normal self, and when I was able to eat a hamburger and french fry meal, or more than one meatball at a sitting, I should open the card and listen.”

He went on to share a bit about a celebration in the bathroom (I think I’ve written about my experience of this before), and the fact that he “expressed this joyous moment to (his wife)”…”I find myself opening the card when I achieve something, or is it getting something back? And I smile…when you get something back, open the card.”

Yesterday on the way home from treatment, I stopped at a convenience store close to home to get milk and eggs. The woman at the register has been working there for years and years. I had one of my baseball caps on, my curly fuzz peeking out, and she said: “You got your hair cut! It really looks cute!” I smiled a great big smile and thanked her as I walked out with my loot. As I was pulling into my driveway, I ran accross this sight:

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As soon as I got in the house I went to the card and played it over and over. My first complement on my hair since before September. That’s getting something back. Thanks M, for the card, the inspiration to celebrate, the support. Thanks whoever you are for the beautiful surprise daffodillies and forsythia in my driveway. Thanks, Mom, for the call tonight. We celebrated that today was day 13 of 33 for me. She told me she is one of 4 selected to be in a spelling bee for people ages 21 and up…is that cute or what? There’s a lot to celebrate. I love getting things back.

Radiation treatment #10 of 33 today

I’m moving along through radiation treatments. I can feel the fatigue right around 2pm or so. By now, 4pm, my eyes are doing the slinky thing. My skin is just starting to turn pink, there is no sensitivity yet. My hair continues to grow, I’m thrilled to say.

A suggested a while back that I might consider shaving my head when this is all over, to even things out and to mark the end of the treatments. I told her I’d consider it. Now I’ll say “if you want to shave your head with me, I might do it. If you don’t, I think I’ll keep growing it, thanks. ” I do need a bit of a trim, though. How goofy is that??! I can see the “curious George” widow’s peak once again. The short hairs on the top all fell out during that last episode of chemo treatments. Now I finally can see my hairline again. It’s barely visible, but it’s there. The fuzz has turned to kind of fuzzy curls. I wear my baseball caps mostly now, and it curls up around the edges. I was backing out of a parking lot at the grocery store the other day, and an older gent who was walking from his car waved me on and said “come ahead young fella”. I smiled. I remember when I first cut my hair short before the shaving party, and my friend S told me she thought I looked cute like a boy with my cap and short hair. It still makes me smile.

I’ve told people I work with to let me know if they think I’m losing my edge. Sometimes I feel really spaced out, more than usual. But I still feel like I can concentrate enough in the mornings, and spread my at home work out throughout the week. Rest time is so important, and getting back to work when I can is equally important. I’m not sure who decided on the 40 hour work week, but I think it’s crazy. Finding time to draw has been impossible basically, but I’ve been out in the garden which is nourishing on a different level for me. Last evening I put in spinach, radishes and lettuce and pulled up a carrot from last year. There was no where else I wanted to be.

We are planning a trip to Alaska this summer. I don’t know how long it’s been since we’ve done the family vacation, but it sure feels great to think about this time together. Our trip will mark a year from when we first heard the news about my breast cancer diagnosis.