March 2010 – Riding a new Horse

18% finito

It’s strange, surreal, like limbo and at the same time not at all like limbo. I get up every morning. The 4 of us get ourselves out the door, some how close to on time. I head for radiation. I’m greeted, I change, I’m shown to the table/bed with the cradle that fits my arms, shoulders and head perfectly. I lay gazing at the suspended ceiling stars above me, and this space age machine hummms and moves around my body. A thin green laser like line helps to measure and align things. Very pleasant people are all around me at once, and then gone. I have my eyes closed most of the time to avoid the tendency to move my head to look at the next shiny object. I’m supposed to stay very still. They come in again and ask something about who I am, getting to know me as something other than whatever coordinates are associated with my name and date of birth. 5 minutes later, I slather myself with either aloe or Ching Wan Hung. I’m dressed for work, heading out the door with a raspberry Nutrigrain bar, courtesy of the cancer center. Today was acupuncture as well.

I head to work, getting into step with my colleagues when I land at whichever office. My schedule pushes my day forward from one meeting to another; supervision, client intakes, planning meetings, interviews with perspective clinicians. Before I know it, it’s 1:00, 2:00, 3:00…later than I intended and I’m back on the road heading home. Stop at the health food store for some nuts, the town office to register the car, and back home to make dinner before we leave for guitar lessons. Then I answer emails and rewrite job descriptions when we get home. One of the children may even crawl in for a quick snuggle before sleep takes us.

The only thing that makes this day something out of the ordinary is the first stop of the day. A parent’s schedule these days would wear anyone out. I’m not saying that my day is any more or less busy than any other parent. What I am saying is that it’s easy to forget that first stop as I get into the flow. At work I’m cheered on as my hair grows. SO much support…I’m told that I’m a goddess, amazing, resilient, unbelievable, and it takes me a while to understand why they are suggesting this. Going about my day I may get some other reminders: my hand may brush against my ribcage where a breast used to be, my ears may get cold as I run through the March rain and wind, I may have a hot blast and whip off my hat/scarf before I realize that I actually have hair now, I may look at my recovering hands and see fading reminders of chemotherapy.

Truthfully, the first many days of this type of radiation to this area of my body have not affected me to any great degree, or at least I do not notice it yet. I rated my fatigue as mild today during the once-a-week nursing visit. I rated my skin irritation as non existent so far, and was told that I’d likely start noticing more of both around 3 or 4 weeks into treatment. My blood pressure was the normal low, oxygen level was 100% as usual. So my point is that I don’t really feel like a cancer patient 98% of the time, and the in and out at radiation is almost forgettable by the end of the day. Once my appointments are in the early afternoon next week, it may halt the momentum a bit. I think that’s good. It will break my day, prevent me from scheduling at that very popular time of day, and I have blocked my schedule after those treatments with the full intention of heading home to rest and/or work. The food fairies have started to flit about again, and I think the timing is really good. It could be so easy to ignore fatigue. I and we are reminded of the awestruck feeling when our support net swooped around us last summer and fall. It’s still very much there, and so easy to take for granted.

I would imagine that it will be so easy, once this treatment marathon is over, to just slide back into life, but I have much to think about. There is a lot of information about what to eat to help avoid a reoccurrence. I am told that my energy will return in 2-3 months, so there’s the idea of actually getting back into an exercise routine. And there’s sleep, which fortunately has not been disrupted very much. These three things are so important to me. I think of the airline attendant who says something like “in the event of a decrease in cabin pressure, don your oxygen mask before assisting others”. If I’m going to be a healthy partner, mom, friend, neighbor, supervisor, manager, aunt, daughter, sister, pal, human, I will have to address my time and the many ways I nourish myself with great intention.

If I asked my family what this phase of treatment has been like so far, I wouldn’t be surprised if they said that life feels pretty normal. I think we all take pause when the reality of cancer in our family hits us at isolated moments. I don’t think there’s too much walking on eggshells around me. I could be such a G.O. that I don’t notice their caution, that’s true. We all have gotten used to this cadence, are in our well worn saddles, my boots have started developing some character. I wish I could protect my family from the ‘what if’s’, but I cannot. I wish my children did not have to think about or ever say that there is a family history of cancer. Wishing gets me nowhere. Moving ahead with intention is the only way we have gotten this far on this particular horse on this particular trail. Taking precaution when we can, attending to our health in whatever way makes sense to us, nourishing ourselves physically, mentally, spiritually, emotionally, these are some of the things we can do instead of wishing. Taking time to talk about fears when they arise, to be angry or sad when we feel it and to not miss the opportunity to laugh together, that’s how we can deal with this. Being present for each other, yea, there’s something to that there.

I have not yet spoken with my family about how long this blog should go. It is not my intention to have it ramble on. I have thought about this a bit lately. I definitely want to take it through the effects of radiation, and perhaps to my visit with my surgeon after my annual mammogram. I may visit the fitta to explore the idea of a prosthesis, and that may be interesting for someone. But after that, it may be time. I don’t know. Thoughts on any of this are welcome. Always.

3 down, 30 to go

So far so good. I’m feeling like a pro going in for radiation. The receptionist was working with someone and saw me enter and said “Hi P, go ahead on in.” I saw the woman who gave me the tatoos who asked if the speakers that were just installed in the waiting area sounded ok. When I was called into the radiation chamber she went on and on about my scarves. Today’s scarf, in particular, matched my duds in a way that drew comments throughout the day. (I think people were telling me that I don’t usually coordinate this way!)

Lying beneath the radiation machine, I felt like I was in a spaceship today. They put a gel filled pad on me yesterday, I think it was called a bolus or something like that. It went over the entire area to be radiated. It is going to be used on me at certain intervals to change the depth of the radiation apparently. I swear, the radiation staff should have roller skates on. They swarm around me when I first get there, make sure the numbers and dots match, and are out of the room before you know it. Back in for readjustments, back out, back in again. They are so cordial, and yet so focused.

I went to leave, smelling like sesame oil, and the person at the desk handed me a beautiful bouquet of daffodils. 10 minutes, that’s all it took. I headed back to town to get a new vacuum (ours kicked the bucket last week), stopped at work and heard from a loving friend about another case of invasive breast cancer, a friend of hers. I immediately felt a calling to help in whatever way I can. I know I’m still going through stuff, but I cannot overlook the help I’ve received from sisters-in-the-know. Maybe I can return some of what has been and still is given to me and us at some point. I picked A up from work, and headed home.

So far I’m not noticing much as far as reactions to the radiation. I am putting aloe on in the AM and marinating myself in the PM with the chinese salve. My next treatment is early tomorrow. I’m looking forward to the weekend.

I smell chinese food

While I was waiting for our chinese take-out tonight the owner asked if I would like some tea. What a nice thing. I sat by the window along the river, warm tea cup between my hands, and watched the pouring rain as I thought about my experience today.

Before I left for work this morning, I took a picture of my scar and the area that is going to get radiation treatment. I plan to take a picture each day to sort of chronicle the affects on my skin. Who knows if I’ll ever publish it, but it can’t hurt to get it recorded.

I checked in at the radiation department and as I practiced during the simulation and verification, headed to the dressing room, picked out a psychadelic johnny 🙂 and stuffed my shirts and jacket in the locker. I replaced my doo rag with a baseball cap (the knot on the doo rag is uncomfortable when I’m lying down). I waited by the window overlooking the fields, and watched the rain come down. A radiation tech found me and took me into the now-familiar room.

Three women helped get me into position. They already had my ‘cradle’ waiting for me – my arms fell into position easily. They worked like quiet bees adjusting and aiming. Someone said a number and someone else verified the same number (this is good) and they asked if I was comfortable. I got to keep my pants and cowgirl boots on and I was complemented on my boots by several people. “We ALWAYS notice people’s shoes in this job!”

Above me was this round disk like contraption, where the ratiation beams come from. It has an aperture of sorts, it reminded me of the lense on an SLR camera. It shuts and opens according to the shapes that are programmed into it. I was draped very modestly today.

When the radiation is turned on, the machine hums a bit. Each exposure was very short, maybe 10 seconds in each position…or so it seemed. After one exposure, the machine passed over to one side, the aperture readjusted, the hum and another readjustment by the team. Sometimes the table I was on swiveled, sometimes the machine itself rotated to the other side or above me. When it was above, I got that waffle iron feeling like I did during the mugga scan way back when. (I was the batter, remember??) A few clicks, a few hums, a few adjustments and the staff came back in, ready to clear the way for the next contestant. It took no more than 10 minutes, I’d say.

I was led to an exam room and met with the radiation oncologist for a quick visit. Each week I will meet with him to go over questions, review the plan and look at my exposed skin. I had him look at the ointment my herbalist gave me, and he said there was nothing that concerned him in the ingredients. I told him it might stain my skin yellow and he laughed.

The “patient navigator” whom I met in chemotherapy popped her head in while I was waiting for the doctor. She is so incredibly sweet and was just checking in. She cheered when she saw my hair whisping out of the baseball cap. My new schedule initially has me scheduled mostly in the early morning, but the scheduler was able to find me a 1:00 time slot for the majority of the treatments. That’s good and will assure that I break my day in half as planned.

I found my way back to the locker and applied the ointment on the exposed area. Slowly I began daydreaming about chinese food and realized that I was starting to smell like sesame oil or something one might find in a chinese restaurant. I went home and picked up E for guitar lessons. It meant a lot to me that he remembered and asked me how radiation went. While he was in his lesson, I went to the chinese restaurant and ordered some food to go. I was sort of afraid that they might decide to put me in the wok if they smelled me, so I kept my jacket zipped right to my chin. Dinner was ready before my tea cup was empty. Back at the ranch we celebrated each other’s day as we cracked open our take-out containers. (A started her first ‘real’ job today…)

I’m 1/33 of the way into this part of the trail. It wasn’t so bad today. I felt fine, no immediate reactions. My horse, she and I are well on our way with so many riders still on the trail with us. I can hear the rain falling on the roof. I might just go snuggle up in bed, one of my favorite things to do on a rainy evening. I think I will use my aloe gel on the days that I go to work after radiation and save the chinese herbal ointment for the days when I head home.

Verification

I met with a radiation oncology nurse for radiation ed. We reviewed most of what I’ve already gone over, and she gave me my schedule of 33 treatments. They wanted me to start the day after, but I’ve planned 3 workshops and a trip to NY for before radiation begins, so they decided to push it to next Tuesday. They don’t want me to miss two days with only two days under my belt. If I were on day 20 and missed 2 days, apparently, that would be more allowable. It was funny, as she looked at me with her coiff and gently made up eyes and said “you know there are free wigs available in the boutique…” and I gratefully declined, showing off my hair growth…She said “you do have a nice shape to your head and face and can pull (the scarf thing) off.” She then told me about the 2 hour session available to go over make up tips and that I would even get to take some high-end products home free of charge. I just raised my invisible eyebrows and smiled at her. I’ve never been one to use many ‘products’. This nurse respected that enough for us to get by during that part of the conversation. I remember Mom asking me on my wedding day if I wanted just a little blush before the ceremony. I was walking around the house with her wedding dress on and my birkenstocks. I think she felt naked FOR me for a minute there…but as we walked up the isle, she and Pop on my arms, we were all aglow, some of us au naturale.

A diversion: I still am glad I chose not to wear a wig, and that I’m not making eyebrows where there are hardly any. It’s all just NOT me to do that. Everyone has to make their own choices here. I feel proud that I can walk around with one side flat where a breast used to be without feeling self conscious most of the time. It’s not that I want to be ‘in your face’ with my changes. For me it is just about evolving with my body changes naturally, growing into my body. If and when I decide I want to do something about whatever, I’ll do it. I’m aware that I go over this ground from time to time as situations arise. I’m glad that I can feel content enough in this area. I have one of my favorite scarves on today and love the way it drapes over my shoulders. My book group met yesterday and there were FOUR bottles of champagne among 8 of us…I think we left one bottle untapped…they helped me celebrate the last chemo, my hair growth, moving along on this trail. I wore my cowgirl boots for the celebration. They commented on how soft my hair is and rubbed my head as I purred and we laughed. (we really did talk about our book too…really!) They, among many others, help me more than they know.

I went into one of the two radiation rooms at the center. It’s all state of the art, as the center just opened maybe a year or two ago. They found my ‘cradle’, the mold / pillow that was made to fit my shoulders, head and arms above my head. I settled into it and once again the drape was down to my lower ribs and my tatoos were aligned with the lasers. The radiation machine can rotate around the whole ‘bed’ and catch me from all angles. It seems that everything lined up well. The ceiling tiles are black with holes in them, and the stars looked like they were shimmering. It was very soothing. The xrays were taken to identify my “boney structure”. It looks like they will be positioning the rays from the sides, but I’ll know more Tuesday.

About 3-4 weeks in, they will be doing something called a breast booster, where they use an existing template to fit my scar. They will make a new one if there is not one already that fits the shape of my scar. They will spend about 7 days or so concentrating rays right around that site. I’ll keep you posted on that one too. They want me to use aloe and/or hydrocortisone on the skin to ease the breakdown, and I will meet with the radiation oncologist weekly to monitor the skin reaction. I’ve communicated with my hearbalist and she is recommending something called “Ching Wan Hun”, so I’m going to go with that. I can use my aloe plant until the jar comes in. I am to put something on the site, my neck to my sternum to the auxilla and way over around to my back two times a day. They caution the use of vitamin C and E above certain amounts as they don’t want anything to prevent the affected cells (if there still are any) from breaking down.

At first the idea of putting radiation off for a week was NOT what I wanted to do in my ‘keep on truckin’ mode, but I planned this trip to see my mom when I was feeling well and before treatments began. This was before I knew they were going to plan them right after the verification. Seeing Mom is more important to me. It’s been too long. During our last conversation I let her know about the upcoming radiation, and that I was feeling really good. I reminded her about my fuzzy head and she said:

“Oh, did I know you lost your hair?”

“Yea, Mom, do you remember that I came down at Christmas time? You asked why I was wearing so many hats…”

“Oh yea, this brain of mine is for the birds. Honey, you have made my day, my week, my year by telling me you are coming down.”

How could I pass up a visit with that angel-mom?

CYP 2D6

Once treatments are over, many breast cancer patients with hormone-receptor positive cancers are recommended to take a drug called Tamoxifen for about 5 years. Our oncologist very wisely informed me that the Cytochrome P450 2D6 (CYP2D6) is an enzyme that is involved in the metabolism of numerous drugs, of which Tamoxifen is one. Here is some clinical information which may sound like blither blather to most, but could be helpful to people on Tamoxifen or for whom Tamoxifen is in the plan. Please understand that this is MY understanding and the purpose for putting it in here is to raise awareness.

Some people have inadequate CYP2D6 activity so these drugs may have reduced efficacy when these patients take them. Sometimes patients are not tested for this, and so it goes undetected. My oncologist asked for an extra vial of blood at my last infusion in order to identify whether or not I had adequate CYP2D6 activity. She told me that if I did not have adequate activity, she would recommend a different medication and one to essentially “shut off” my ovaries. (The idea of shutting off my ovaries struck me as something to avoid if at all possible.)

I think it’s also important to mention that many drugs can interfere with the CYP2D6 activity like some antidepressants and some heart medication, so that may be something to check out as well.

It amazes me that science can see this information in my blood. Although I’m really tempted to copy some of the lab report here just to impress readers, I’m going to spare you. It’s quite a remarkable report albeit full of words I cannot pronounce. The GOOD news is that my CYP2D6 is doing just fine and is considered in the report to be a normal metabolizer with extensive enzymatic activity.

I hope this helps someone somewhere.

Next up: the Verification appointment on Tuesday where we learn whether the sights and beams are set correctly to hit the targets and miss the rest of me.

Simulation

Yesterday was the simulation. I went and had my vitals taken, met briefly with the radiation oncologist and then was lead to the radiation area of the cancer center. You know, they make cool colors for cell phones, for cloth diaper wraps for babies, for paper cups, dog collars, even fruit loops, but never have I seen a cool johnny. I went into the CT scan room and they had me lie on the table and put my head on this pillow of sorts. I positioned my arms over my head and they basically sucked the air out of the pillow so that it formed to my form. I was told to turn my head to the right to avoid creases on the left side of my neck which they said could add to the skin issues I would inevitably experience. The radiation oncologist came in and drew on my chest using the scar at times as a guide. The other 2 staff put some stickers on me which are designed to show up on the scan. The johnny was draped back over me.

They sent me into the tube for the first run. I was asked not to move (but I didn’t have to hold my breath like in the diagnostic scans I had last fall), and they went out for a period of time which seemed long as I was lying there with my arms above my head. Eventually they came back out and checked things out to verify that they’d marked the correct areas. If targets had feelings, this must be what it feels like when someone sights-in a rifle. Or maybe I felt more like the subject in a petrie dish. Or perhaps both. When they were happy with the alignment, they put a small dot of ink where all the lines intersected and pricked me with a pin to create a freckle-like tattoo. I think there are two on my left side and one on my right. These marks and the pillow form will be what they use to line me up each time. One of the staff had two such tatoos put on her hand to show patients. Even though they are really small, I was struck by the dedication she must have to do that for our benefit. This appointment took about an hour total.

As they were marking me up I felt fairly vulnerable. I was expecting to have my left side exposed, but most of me was exposed as they worked to line things up. I chose not to get heated blankets in what was a fairly chilly room because if I had a hot flash I’d have a hard time not moving. I had to leave my head turned to the right the whole time. I tend to prefer female providers, but I do ok with males. Fortunately there was one of each this day. They were good about draping whenever they could. They were extremely kind and respectful. If someone had come with me, I’m not sure how much of that they would have been permitted to attend.

Radiation is something we all are encouraged to avoid whenever possible, and here I was signing a consent allowing exposure to radiation for 33 treatments. That’s 6 ½ weeks. We took the plunge at the start of all this to follow the recommended protocol whenever possible. I kept reminding myself about those who have been in clinical trials to help come up with the cocktails and the formulas that have informed my treatment. I wouldn’t say I have had second thoughts about our treatment choices. It is what it is, but it’s truthful to say that I don’t like this. Here again is something I have to do all by myself. People can come with me, staff can support me, but everyone exits the room when the beams fly except me. At this point in my treatments, I am feeling the most normal I have felt since September. My life activities are getting back to normal. I’m working most of the time. I’m getting more active. This just doesn’t fit with entering the cancer center and taking that familiar pose under the scan machine.

Now that I’ve written it out and had time to think about it, I am able to think of the questions I could not articulate when the radiation oncologist and I were sitting together in the exam room. I’ve written them down for my next visit.

As I was leaving we identified some preferred times to schedule me for the treatments. First thing in the AM appointments are the most popular so I’ll have to queue up for my turn. I asked for early afternoon appointments until the earlier appointments are available, so that I can just do it on my way home from work. This will give me a definite cut off time each day and will most likely assure that I do as I say and head on home.

The next appointment is in one week and is called a Verification where they put me back in position to do a dry run of sorts. At that time they will take x rays . I will also have the port-a-cath flushed, which is something that is recommended once a month if it is not being accessed regularly, in order to avoid clotting.

Getting physical

On Saturday night I lay my head on the pillow thinking “AAAAAHHHHH, all I’m doing tomorrow is making some cheesebread and soup for “employee appreciation week” at work. D and I planned to walk again so that would also be in the mix. In the morning I was enjoying the morning light and rolling over yet again to talk with whichever kat was in front of me. Eventually I heard B say something like “So, wanna work out with me this morning?” He was taking E to his class a couple miles from the gym.

I guess I can’t honestly say that I was kidnapped. I lay there thinking of all the reasons I shouldn’t go with B, not the least of which were my plans with D. The next thing I knew I was putting (not enough) things into a bag and I was in the car. B is a good coach for me. The two 15 minute periods on the treadmill felt great. I went about a mile each time, and the first round I jogged for about 1/2 of the distance. THAT surprised me. During the second 15 minutes I timed my intervals with B’s, and was pleased that I could keep up with that. As for the other parts of the workout, I just stuck with whatever he put in front of me. There I was, feeling pretty cute as he benched like a zillion pounds as I was working with the weight of the bar which is something like 45 pounds. I WAS doing it and that truly felt great.

The only time I noticed the effects of chemo was when I was trying the neck machine and my baseball cap kept falling off. There’s a balance I have not struck yet between sweating and keeping my head warm enough…alas. I noticed more the effects of the surgery as I worked to do dips and the bench press. I was conscious of being careful as well as conscious of how good it felt to stretch in that way. Today my body feels like it’s done something different, but I’m not all stove up (as we say in New England). On the way home, we were driving down our road and D was heading down her driveway with the dogs. I hopped out of the car to walk with her. Trudging through the snow covered parts of our trail just about did me in, but we did it. I almost called B from the bottom of our driveway to get a lift up the hill! It felt GREAT to get home, put my legs up and have some water. Man, I was thirsty.

Thanks B and D for being my inspiration to get and keep my body moving.

As I mentioned in my last entry, I’m not always conscious of the physical effects of chemo, but when the sun light hits my hands in a certain way, or when a scarf is just annoying and a cotton hat is just not suitable, those are the times I remind myself that this will pass. There have been more comments about my (lack of) eyebrows than anything of late, these coming from loving people who are apparently just caught off guard. It’s just such an in your face kind of thing. (or should I say an “on your face” kind of thing?)

I have to say, though, that each day when I wake up my first thought is a happy one…I’m this much farther away from the chemo. It’s been two whole weeks, and that’s happy making enough for me. Tomorrow is the simulation. I’ll be sure to post something about that for sure. Continued thanks to you all for your endurance. I/we could not do this without you.

More energy

P joined me for a workout yesterday. On those Sundays when the man-cub has Jujitsu I like to sneak in an extra workout — P joined me for one of those. It was good to have her company.

She did all the circuits that I did, though, she modified them a bit to keep from over doing it since this was essentially the first work out in a while. She and D have been fairly regular in their walks and I’m glad of that. As with all working couples with kids it is hard to sneak time out for “dates”. And perhaps not the most romantic, yet, I was glad to share the gym with her and coach her on stuff.

I like to warm up with intervals on the treadmill (if I’m indoors) so 15 minutes of that to start with. Then P moved over to the Gravitron which is a cool machine for doing assisted pull ups and dips, and she paired that with Good Mornings. We moved over to the Squat rack and the Incline Bench Press and did reversing pyramids on those two exercises, which means 10, 8, 6, 4, 2 of one while the other goes, 2, 4, 6, 8, 10. We set up a medi-ball to squat down too so that we were going deep, well past parallel. Then back to the treadmills for another 15 minutes of intervals. And then we finished with another circuit — popularly known as “core”:

Farmers Walk
4 Way Neck Machine
Standing Cable Crunches
Diagonal Plate Raises
Farmers Walk

Roll outs
Good mornings

Then I dropped her off at D’s house and they walked 3.5 miles. I was really happy to see her feeling so energetic after just a week off from the chemo.