Patty Morini – Page 9 – Riding a new Horse

Round 2, Cycle 3, Day 1

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9:00 am: I’m having my infusion right now. It’s going without a hitch. Blood draw was immediate, they took enough blood, labs looked good, 25 mg of benadryl is the standing order now instead of 50 mg. I may set a record for getting out of here in less than 3 hours. B is home with a terrible head cold and apparently he called me a few minutes ago. I didn’t get the call because I have my phone on vibrate and it’s in the left pocket of the shirt I’m wearing. I have no sensation on my left side, so I could not feel it vibrate.

I can get up to go to the bathroom during infusions. I just have to unplug the IV machine and drag the IV tree with me. As I was doing that today I had the thought I have occasionally: this is really happening. When I’ve seen people dragging their IV bags around with them in hospital or movies, they usually look very weary of the road, just wiped out. (how’s that for stereotyping??) Here I am with my cowboy boots, black pants, B’s flannel shirt and a Santa hat, feeling tall and unfrail, walking to the loo with my IV tree. Surreal.

I went snowshoeing with D yesterday. It was perfect. A beautiful day, a bit chilly with the wind, but it felt so good to get out there. When she called we were both talking about having things we needed to do. Taking an hour out of a day that’s full with I WANNADOs can be a hard thing to do. But that hour was more than an hour of my time. It was time in the fresh air, moving my body, chatting with a good loving friend, laughing, throwing the ball for the dogs, smelling the winter air, living life fully. I took my poles with me and my arm felt really good with the movements. I think I can make 2/3 of an angel wing on that side now. Thanks D for the walk and for always meeting me out there, even when we go at o’dark:30.

6:15 pm: All’s well. I’m thrilled about this. I’m working a bit and getting excited for Christmas. I plan to work in the AM tomorrow and home to rest and work if I can…trying to be careful. B scanned the photo and I put it up on the Uncle Charlie entry if anyone wants to go back to see it. I think we all could benefit from taking that posture from time to time. I miss him.

Kids found their OWN rides tonight to hockey and bowling…they are developing some independence. SO B and I are home alone (well, the katz and fish are here too). Aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhh.

Uncle Charlie made me think

Amidst breast cancer treatments life goes on. THANKFULLY I am feeling good so we’ve been very busy, as a family with two teenagers tends to be. The GUPDATE on the hot and sour soup is that it was FABULOUS (with no repercussions)!! Along with our Maine family, I have a relatively large family of origin and we have had an event. My mom’s brother died last weekend. He was 91. At my wedding almost 20 years ago he and I were dancing and he told me I was his favorite niece. A few carefully placed steps later he said “you’re also my only niece”. I never realized that until that moment. There may have been fewer girls in my family, but we certainly are GEMS! (Mom’s side had 4 boys and me in our family, Mom’s brother had 3 boys and a girl and Mom’s sister had 4 boys and Dad’s brother had 2 girls and a boy.)

Anyway, I’d been talking with Uncle Charlie more frequently since his 91st birthday in October. Our conversations were always tender and full of humor and love. We were able more recently to relate to one another’s medical issues and he was always very encouraging. On the Saturday before he died, I was on a long call with my brother and I noticed Uncle Charlie was ringing in. I don’t know how to work that darn call waiting thing, so I made a note and called him back on Sunday. He sounded so tired. Basically he said “All I can do is sit and think and I don’t like that.” This is coming from a man who has been very active all his life. I don’t know for sure but I think he was playing golf until maybe 2 years ago? Always appearing fit both in mind and body, my uncle was very much alive. We spoke of gardening and he is the one who told me the missing piece to my pasta sauce…my grandmother never put onions in her sauce. I will miss those tid bits that can only come from that generation, so I’m planning on squeezing as much as I can out of my mom (87) and her 93 year old sister. (Their other brother’s ship, the U.S.S. Sims went down in the 40’s, and we never had the honor of meeting him.)

Uncle Charlie and I spoke about cancer and about how we each were working to try not to make it the ONLY thing in our lives. Since his birthday, his medical issues were becoming the ONLY thing in his life. This was so disappointing to him. He had a wonderful partner who lights up rooms when she enters. He had a wonderful daughter who was there much of the time. He had terrific and very funny sons and grand children and great grand children and nieces and nephews and friends and siblings who loved him. But this was not enough to sustain his enjoyment of living. When I asked my dad what he thought about his own mortality, he said “why would I want to leave this wonderful family?” , but the time came when he was able to let go. I got the sense at the close of my call with my uncle that he was on the brink of making a decision for himself. This decision was not one he necessarily wanted. He was a full blooded, first generation Italian American, and there was no darn way that he was going to linger. I was not there when he died. I don’t know the whole story. But from the bits and pieces that his children, my cousins, have generously shared with me, I think he made his decision to leave this body behind. The last thing he said to me was that he knew my treatments were hard, but that I would be fine. “You just have that way about you, only niece Patty, and I love you.”

SO, what does this have to do with A Family’s Life with Breast Cancer ? Well, I have never had a life threatening illness before. Just thinking about that gives me pause. My body was attacked and we fought/are fighting to permanently evict the intruder. My body is NOT tired as Pop and Uncle Charlie’s bodies were. I plan to give it my all, like usual, and live fully. I’m not tired. That is what makes a possibly shortened life very sad to me. However, in spite of all of this, I don’t put myself in the catagory of someone who will die prematurely. I went to a follow up appointment with the surgeon yesterday. I stopped when I got to town and picked up a salad and right there was a beautiful bouquet of Gerber Daisies. And yea, they were pink. So I snatched them and when I got to the reception desk, I asked the nurse to put them in the doctor’s office. The doctor greeted me with a big smile, a thank you and hug and checked out the incision site saying that it looked great. We spoke about follow up care. She will now be ordering my mamograms and I will see her at 6 months and then yearly thereafter. I like the idea of her being on my team now. We spoke about the meeting with the radiologist and this current chemo. “Basically the cancer is out and Taxol and radiation gives you the best chance of avoiding a reoccurrence.” So I thought maybe I could now say that I HAD breast cancer…hmmmm. I asked her if she knew the numbers relative to doing radiation or not. We have decided that it will happen, but I was curious how that changes our odds of reoccurrence. She said something about “the survival rate” and I didn’t really hear the rest of what she was saying.

Lately I go along with my days, grateful beyond belief that I’m feeling as good as I am. SO giddy about this sprouting dark hair on my head. Thrilled at the thought that the cancer is OUT thanks to chemo, surgery and tons of prayers and loving thoughts. And in my Winnie the Pooh way, I say, OK, what’s next? Let’s move on. Some have told me that it’s “OK to share” my feelings, it’s “OK” to have down days. I may be fooling myself and others, but I don’t usually have down days. I don’t usually dwell on things. Maybe B or A or E would have other things to say about how I am. I know when I’m tired I’m short tempered, but that has nothing to do with this journey. I’ll ask them. I know that I have today. I know that I do not choose suffering. There were darker, sadder, more tired days during the first chemo episode. But I think the readers of this blog are getting all I got.

Uncle Charlie gave me some of his last thoughts. That is a gift. He showed me a lot about living life fully. Numbers and survival rates are not as important to me at this point in the journey. When we were planning the course of treatments they certainly were, but at this point, we have decided to go the length of this marathon and sometimes questions like the one I asked the surgeon can become obstacles. At every family affair Uncle Charlie ALWAYS found a place to park his body and close his eyes. At our wedding it was in his suit on the lawn next to the patio. At reunions he always found the hammock. His usual posture was on his back with one ankle crossed over an elevated knee and his hands clasped across his chest, eyes closed. That is the indellible image I have of him and it reminds me to trust the process, to trust my sense of what my body needs and to dig deep into my sense of spirit and peace.

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Round 2, Cycle 2, Day 2

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Well cycle 2 has started. I asked for rides this time just because I wasn’t sure about the benadryl affect. SO an angel drove me all over creation to do errands and then dropped me off at the cancer center. The port access went smoothly even with a new nurse doing it. I just had her recline my chair and she filled the vials no problem. The problem that arose, however, was that one lab order had not reached her in time, and they had to take one more vial when I was out at the chemo chair and we had to wait for those results before proceeding. Waiting…waiting…waiting. But it gave time for me to talk with the oncologist. I asked if she could split the dose of benadryl in half. She was very amenable and changed the order. It was much easier to drink tea, draw and write with only 25 mg of that drug in my system. It was so easy to get it reduced, I don’t really know why they start with 50 mgs. I suspect dealing with a groggy patient is easier than dealing with an allergic reaction to Taxol.

I met someone who is the American Cancer Society Patient Navigator who works at the cancer center. She’s a Nurse Practitioner and is the liaison that I think we were missing at the start of all this. She basically can hook us up with whatever we need. She has tons of information from the cancer society about funds and services available to help cancer patients. She is a delightful woman. She turned me on to Casting for Recovery which provides retreats for breast cancer women free of charge. It’s a weekend of fly fishing instruction and interaction with others who’ve been there. If you’re interested in learning more or donating to this cause, you can go to www.castingforrecovery.org. I’m definitely looking into this. I hope to be able to do this this summer.

The infusion went fine once we could get started. The whole thing took a lot longer than usual because of the lab glitch, but I was keeping myself occupied. I was asked to show some of my artwork to the nurses. I called another angel for a ride home. The katz and I napped and I was grateful for the crock-pot that was simmering while I slept. Again I was careful about what I ate. I drank a lot of water before and after the infusion and around 3 this morning I awoke with a bursting bladder. When I woke I had some feeling in my intestines that I might categorize as mild cramps. I was also really thirsty. It wasn’t nausea that I was feeling. I emptied my bladder and drank a bunch of water and when I lay back down it felt much better.

Today, day 2, I’ve felt well. Small snacks throughout the day helped. I worked in the morning, had acupuncture mid day and worked from home in the afternoon. A friend is bringing chinese food for us tonight and yesterday when we spoke about preferences I was really tempted to have her order some hot and sour soup…but wanted to be careful. I told her I’d give her a gut update today. (Gupdate for short.) This afternoon’s gupdate was: BRING THE SOUP!

I find that when I’m asked how I am feeling, that I cautiously say “good” . I do feel good. We’ll see how I feel after the soup though!

Snow, normalcy, updates

The snowfall on Wednesday was beautiful. We had about 8 inches at our house I think. We have been really busy. I just dropped B and E off with 7 others who are going to go winter camping in the foothills of Saddleback Mountain. Between getting to work and our other commitments, we have been stumbling around insulite pads, insulated sleeping bags, gorp and snowshoes. B and E have been putting together pulks, making waterbottle necklaces out of old padding and duct tape and running around in their long underwear. I love camping. Unfortunately I don’t think my body can manufacture the hutspa to keep itself warm enough even if I put the campfire inside my snowsuit. (This, of course, is totally not counting the hot flash syndrome…) I was freezing just standing outside taking pictures of them all loading the gear. Right now it’s 20 degrees at our house and the wind is a howlin’. I’ll put on some venison stew today so when they get home tomorrow afternoon, they will be happy boys.

Instead of camping, I get to be the chauffeur for the 15 year old girl with the very busy social life this weekend. That’s ok for me too. I love that she is involved in her life and has such sweet friends to be with. I think the distractions are important at this point. She checks in with me regularly. She tells me I’m cute, especially when I rip my hat off during a hot flash. She snuggles with me just at the right times. We are AOK.

I have been able to get to work each day. I’m meeting with staff and am getting a sense of the things that I can get accomplished on the short term, since the longer term is more difficult to plan for right now. I am trying to be careful about over committing and not being able to fulfill my promises. I’m being cautious about my availability because I just don’t know how the chemo will affect me over time. It’s been great to get my mind focused on other things and feel like I’m doing normal stuff. I’ve felt energy and no discomfort all week.

We met with our radiologist yesterday… the first male doc on the team. He is really a gentle spirit. He said that if more than 4 nodes are involved, my chances of staying cancer free essentially doubled if I go forth with radiation. No brainer. We went into the visit with this expectation so there was minimal disappointment for me. Don’t get me wrong, I would have loved to hear “no radiation necessary”. But this is NOT realistic or wise in my case. At this point it’s more of the pickin’ em up and puttin’ em down sort of thing that B is teaching me so well. This G.O. has had to learn that there is optimism and then there is fooling myself. There IS an end to the treatments, it’s just not this week. I think my idea in a much earlier entry was that springtime will be the time for new growth and energy.

Here’s what I took from the meeting: Two weeks after chemo is over we are to call and make an appointment for a simulation. We learned that when one gets radiation, the majority of the time is spent on positioning. In order to keep the subsequent visits short and the treatment accurate, they make a pillow of sorts with an impression for me to put myself into each time. This is like an hour long process but only has to happen once. I will be positioned with my hands behind my head. They will take a scan of the area so that the radiologist can make the plan of how much radiation, where to aim the beams and what shape the beams should take. There will be some radiation to the area under my arm as well as on my shoulder as there are nodes up there. They will tatoo me with dots the size of a freckle at certain points, and this will allow me to be in the right position and the machine to be lined up consistently each time. (I wonder if that’s the time to ask the tatoo artist for his/her portfolio? Maybe I could get a two for one deal or something.) It will apparently be like getting a sunburn over time. This occurs 5 days a week over many weeks. Apparently the actual radiation time is something like 5 minutes once everything gets set up. The doc encouraged me to bring along aloe gel to put on right after the treatments. He said that treatments will not hurt and I will feel the same leaving as I did entering, but over time the biggest reactions to radiation in this area are fatigue, skin stuff and maybe throat discomfort. I guess bringing the SPF 50 might be counter productive.

He examined the incision and encouraged more scar massage and aloe to keep the area as stretchy and supple as possible as well as to counteract the chemo affect on my skin. You know, since I’m inexperienced at surgeries, I had no idea about the care and feeding of an incision other than the initial keep it dry phase. Now I have to keep it MOIST. My skin is dry enough in winter. With the help of chemo and radiation I may look like a raisinette in short order. The biggest take away for me from that meeting was my feeling about the radiologist. He’s a keeper. There was something about him that reminded me of a sweet friend of mine.

So I want to write briefly about massaging a mastectomy scar. I just peeled away the last of the seri strips from the end of the incision near where the nodes were taken. That stuff is amazing. I remember the days when we’d get stitches and walk out with the stitches showing. Seri strips are such a good idea, I wish I invented them. It is a bizarre feeling that there is no sensation on the scar. I still have some residual adhesive around the area because I’m hesitant to scrub it off because I cannot gauge how vigorously to scrub. OK, probably more than anyone wants to know, but no one told me this stuff. I’m a very sensory oriented being, so it fascinates me. I’m sure there have been numerous occasions when my family heard “Oh WOW!” from the bathroom and just didn’t want to know what was going on in there. So the feeling I DO get when I massage the scar is not physical. I guess I would call it a nurturing feeling. Like building a relationship with this new body.

12/8/09

Well, today was great. I’ve felt good all day.

I went to meet with an OT to talk about Lymphadema prevention. She thought I was there because I was having symptoms. She was surprised at my current range of motion and cautioned against moving too fast to regain mobility. She said that straining could cause a build up of fluids just as non activity could. Repetitive motion is also discouraged right now, like if I swim, only doing one stroke. In fact she encouraged starting out with just stretching exercises and if done in the pool the compression from the water would be even better for me. I have some conflicting information about doing some weight training to prevent symptoms…so I will look for help from B and others to figure out where my balance will be in this phase of recovery. Right now I’m doing some yoga stretches and others each day.

I went to work for the morning. It felt great to be there and doing things that made a difference for the programs I manage. I’m so fortunate to have the job I have at this point, and to have the support of those I work with and for.

Acupuncture was next and I felt very strong going in. He always finds points to work on and I leave feeling, oh, I don’t know, a different kind of energy flow I suppose. I plan to go the day after each infusion. Today I needed no help in the intestinal/digestive area. I am having no symptoms to speak of. OK, it’s 8:30 and I am ready to go to bed…maybe that’s one there.

When I returned home I worked a bit, helped the kids with homework (I love to see how their minds work), ate a good dinner and now by the fire I’m contemplating an early bed time.

Muchas Gracias for your comments and emails. All the readers of this blog are contributors to my G.O. energy these days. I just wanted to do a quick check in. I feel real good today. Real good.

Round 2, Day 1 Cycle 1 of 12

When the kids came home today the first thing A asked was how day one went. She’s so thoughtful. Here’s how it went:

I was standing at the check in place at the cancer center this morning bright and early. A woman in scrubs came from behind and as she was passing me she turned and looked and me and said “you look great”. Was it the cowgirl boots and my black jeans? B’s flannel shirt and the down vest? My Santa hat and green sarf? Gosh…it could have even been my arse! She was coming from behind me after all…tee hee. It was just a sweet thing to hear out of nowhere at 7:30 am Monday.

The nurse accessed my port with no prob getting the first blood draw. Then it would not come again. So she tipped me back and filled two vials. She explained that the catheter may have been up against the wall of the blood vessel thus causing a vacuum. “Positioning” she said again. I asked if I should be laying back for the chemo and she explained that liquids going in would push the catheter away from the wall, so it would not be necessary. It’s just drawing out that is tricky sometimes. I was out of the lab in no time.

The nurse who took me back to the infusion space commented on my boots. She took me back and got me settled in. I didn’t realize that along with the Taxol and anti-nausea meds that I’d also get a small bag of Benadryl. Apparently some people have reactions to Taxol so the Benadryl is standard procedure. It was a tiny bag hanging on the I.V. pole. I brought my laptop, my book, knitting… and was signing timecards and answering some emails when suddenly I thought the prescription on my glasses was going weak. After a while I was misspelling everything and just wanted to close my eyes. The nurse was fiddling with something and I said something like “OOOOHHH, Benadryl….” with a dawning expression. She said, “Yea, 50 (milligrams or cc’s or whatever the unit of measure is)”. So I logged out and just spaced out for a while (like for the rest of the infusion). I heard some really cute volunteers mulling about asking if Santa was sleeping. They were so elf like it wasn’t funny, and tried to get me to take something from the breakfast tray. I mumbled something about the ball on the end of the hat being a hindrance when a good nap was in order.

Cycle-12-Day-1-150x150 By the time all the bags were empty, the Benadryl effect was gone and I went home. I ate some broth, answered a couple emails and provided a warm body for the katz to nap with. When I woke 40 minutes later I thought I’d just doze off again, but there was no more sleep to be had. I got up and worked and made some dinner. I have awareness of my gut, but it does not feel like nausea yet. I’ve been very good for the past 3 days now to drink a full gallon of water. In fact I’m on my last 2 cup fulls now. It’s work to do this, but I think it really helps my body to move this stuff through. Being hydrated is always a good thing for me. I was also given some really cool ginger chews from friends, and they really seem to help better than crystalized ginger for me.

I loved the story I mentioned last time about my friend and the roses. I decided to do one drawing over the course of the 12 infusions. I’ll give you a peek each week. I did not intend this to look like a crucifix, NOT AT ALL. I don’t feel like I’m being crucified. It will show more of my intent when the other sections are filled in I’m sure. I also like it because it’s small and can be done before Benadryl head sets in…

As I was writing this tonight E was on the couch just cracking up. He found a video of cats and dogs where humans voiced over burping and farting noises at just the right time. He came to show me and I found myself watching him more than the silly video, and cracking up at his complete loss of control laughter. Such a 13 year old boy he is! Good medicine strikes again.

It’s 6pm now. I feel OK. One day, one hour, one minute at a time.

On the subject of Butter, Santa Hats and the 6 o’clock shadow

I needed 1 cup of butter this morning, which I had, but it was frozen. In the no microwave house, that means either it has to thaw the old fashioned way, or…call the neighbors and exchange frozen butter for NOT frozen butter. (Mind you, I didn’t want it melted.) When I was sure our friends/neighbors were up for the grand exchange, I grabbed the first hat I could find to venture out in the beautiful snowy day; it was the Santa hat E has been wearing since Rocktober. NOW I know at least 3 reasons why Santa wears such a thing. 1. It’s wicked cozy and warm, all that fur across the forehead and around the ears. 2. It’s incredibly stylish. 3. It is so much fun to move one’s head from side to side and flop the furry ball on the end back and forth…and when one has no hair, one is even more sensitized to that thrilling action. I’m going to the attic to get the other one because I KNOW the boy will not share for long. I don’t think he saw me when I went out.

Speaking of hair, I have a 6 o’clock shadow all over my head now. This would be about 1 1/2 months since the last chemo infusion. I read that hair can take 2 – 3 months to start growing back. I’ll chalk that one up to my thick Italian genes! It’s just stubble, shadowy growth, but growth it is, all over my head. Previous to this experience I never mustered much in the line of facial hair. I’m watching carefully to see if there any sprouts on virgin territory with this chemical bath I’ve been having. Never-the-less I come out every morning and show my family my head. After a while the excitement is wearing off for them, but for me, it could not be more alive. SO I showed our butter swaping friends this morning and received the most wonderful excited response and head rubbing. Prrrrrr.

So my hair returns just in time for chemo tomorrow. Some have told me that their hair continued to grow during the second batch of chemo. We’ll see. I think I’ll wear a Santa hat when I go.

12/5/09

Axillary node disections take the fat with the nodes. You know, deodorant doesn’t usually feel very cold, but when there is little to no fat left in the old pit, it can really wake a person up. I’m not exactly sure what I can do about that except SUCK IT UP , design a heated deodorant dispenser or stop using deodorant…hmmmmmm. I wonder.

What beautiful days we’ve had recently. I am feeling awake, fairly energized, my tightness is loosening slowly. Acupuncture was pretty amazing yesterday and the provider was surprised at my energy. My monthly chiropractor appointment for well care was great. He said something about not believing how balanced I was in the skeleton/muscle part of things. He said he was amazed that I was smiling and it got me thinking. (I know, scary, eh?) Some people are so surprised that I’m doing normal stuff and feeling normal some times.

Breast cancer is not necessarily the worst thing that has happened in my life. The period of time a person is in treatment is not always bad. I mean there is nothing about diagnosis and treatment that feels OK. HOWEVER, there are definite periods of time that I am not preoccupied, sick, scared, mad, depressed. In fact MOST of the time I’m not any of those. I think around cycle 3 one could see the wear and tear. At that time there was more of those difficult and very observable symptoms than not. However, now being on DAY 46 (wow) I am caught looking tired or maybe thin skinned at rare times, but overall my whole self is doing pretty well. Ok, ok, more G.O. blither blather going on, but you know, life goes on. THANK GOODNESS.

I’ve been going to work some days, working from home some days, taking the kids wherever, going to dinner, entertaining friends. I’m parading around with my real body and am noticing only sometimes that I feel a twinge of self consciousness. I notice sometimes that people who know what I’ve been through have to take a glance. Some come right out and say it “let me have a look at you” (meaning, in my clothes, not the exhibitionistic stuff I mentioned previously). These, of course, are close friends. I’m totally cool with that. I mean I want some people to be right up front with me. Others don’t even mention it, which is cool too. Everyone has to find their own level of comfort with my physical changes…once they get beyond that I’m still me.

This morning E and I went to the transfer station (AKA: DUMP) in town to bale newspapers for the Boy Scouts. It’s one of their regular fund raising tasks every other week. With 4 others we put the flattened papers into the baler and after it was all baled, it weighed in at 1635 pounds…the record there is something like 1650. The boys were happy about that. It was great to get out and move. I noticed that when I bumped up against stuff I didn’t really feel it on my left side because it’s all numb. Kinda a weird sensation. I don’t feel as much afraid of contact any more as I feel like I have to be aware of contact because I can’t really gauge myself. I guess what I’m trying to say is that it is not self correcting like bumping up against something on my right side. Just an interesting observation for me.

So Monday starts the twelve 7 day cycles. Cycle 1 Day 1. It helps me to see it that way so I know I’m moving through this. As I think about it, these shorter cycles feel more like the sprints B was talking about. I feel like we’re galloping toward the finish line. My friend told me that when she was going through chemo her partner brought roses to her at each infusion. The number of roses each time corresponded with how many more infusions she was to have, so as she moved through she’d get fewer roses each time. I thought that was really cool.

My lovely friend who is organizing the food has been telling me that many of our meals on wheels chefs are all chomping at the bit to get the food rolling in again. We’ve been saying that we’re doing ok, and let’s see what happens…and she says something like “I’m going to have to release the beast soon…” The beast, of course, is the momentum this port of love has gained. Endurance among all the angels continues.

12/1/09 Oncology meeting

P: Well, even the woman who can access my port and get a good blood draw every time had her day. It was today. With me. She got a good draw at the very start and then it just quit on her. What I saw in her that I did not see in the people trying to access it for the surgery I.V., was knowledge of how to work with this to ultimately fill the two vials for the lab. “It’s positioning” she said, “and I have guys here who tell me how they had to do it last time, and it works every time…whether it is raising their left arm like so, or leaning forward…” She had me raise my arm over my head, and ultimately reclined the chair so my head was, I think, lower than every thing else. She scored.

B: Oddly this was the same person who so badly botched one of our visits. I think she has been referred to as nickers-in-a-twist nurse elsewhere. In the end we have to give her credit. She had a bad few moments with us once, but, every subsequent interaction has been top notch.

P: We met with the Oncologist and had our usual check in about all that’s gone on and how we were feeling. As planned we will start 12 weeks of Taxol, “a different chemo drug with less toxicity”, she said. She wanted it to start within the month. At first B suggested that we wait until after the holidays, but that would mean like Christmas week if we were going to start up ‘within the month’. Ultimately we both agreed just to get the soonest appointment. I start Monday the 7th at 7:30 am. Soon enough? I ‘d say. This will mean 12 – 7 day cycles.

She referred me to the lymphodema clinic to get some instruction on ways to prevent arm swelling, and said she’d refer to the physical therapist there who is a specialist if I wanted to go to P.T. We’ll see what Tuesday brings next week. She also is referring me to the radiologist. If only 3-4 nodes were involved she would not be recommending radiation. She would if all the nodes were involved. Because I fall in the middle, she said that the radiologist will help us make the call. At any rate, if radiation is to happen it will begin after the chemo is over. Apparently there is quite a synergistic effect if both are done at once and we are trying to minimize the harm here. I really appreciate that, even if it means 4 additional weeks beyond chemo. She wants to closely monitor whether I get tingling in my hands or feet and will either reduce the dose or change the drug if it starts to happen. This can be a permanent thing that we all want to avoid. (This is a form of neuropathy which could reduce sensitivity in my hands and feet and make rather mundane tasks a chore. ) Body aches are another reported side effect, but apparently go away when the drug goes away. I won’t have any exciting colors coming from my bladder, alas. I can live without that excitement. The usual are possible: nausea, vomiting, hair loss (oh gosh what will I do if THAT happens?), loss of appetite, fatigue…you name it. These seem fairly generic to chemo, however I’ve been told by women who have done this, that Taxol is SO much easier on the body than the AC combo that I had. Like the others, it can burn if it leaks under my skin. Pleasant thought, there. She did say that the WORST of it is behind us. I will hold on to that one.

B: So, it looks like 16 weeks more of treatment hopefully done by April. I can’t over anticipate the side effects cause it is what it is and we won’t know that until we live it. I’m not sure this will have the intensity of what we’ve been through. I think I’m going to cast about for a different metaphor. Perhaps, remembering back to some of the experiences of my youth, backpacking in the Sierra Nevadas. Perhaps this is a 60 pound backpack, and I’m looking up at a series of switchbacks. Switchbacks have to be the most tedious of outdoor experiences for every gain in elevation you retrace what seems to be the exact same horizontal distance over and over. So, just do it.

P: This was all that we expected today. If we put it off a week or three, we are still going to have to deal with this. I pray for endurance and will be hooking up for more acupuncture to help with the body stuff. We will have to just take one day at a time and hope that we can have a fun holiday and winter with our family and friends. GIDDY UP GIRL!

11/30/09

I intended to publish this last night, but lost my server…so I’m putting it up early this morning. Happy December everyone.

Life has felt very simple and normal these past few days. Our Thanksgiving was really fun with friends, terrific eats and lots of laughter. At this point I have an appetite, and can taste everything. My sensitivity to hots and spicy is a thing of the past for now. Bring on the jalapenos and zippy mustard. I can even TASTE my favorite jasmine tea which lost its’ luster around cycle 2. (That was REALLY a bummer.)

Life after surgery is going ok. I only have a band aid now over the hole where the drain exited. I’ve noticed a slight bruising of sorts where the drain traveled in a “C” from my arm pit around to my sternum and down to my lower ribs at my side where the exit hole is. The most difficult movement right now continues to be that snow angel wing movement. I have been putting my hand behind my head when I read or lie down. Even that is a challenge, but I can feel the changes every day, thankfully. When I open my center by pulling my shoulders back, I feel great and can breathe deeply. I can do some modified yoga stretches with my arms.

I speak about admiring everyone’s endurance, the love, support, calls, cards, prayers, which are all still coming on strong. I see what I THINK is wear and tear on B who has had his sights on me and our kids with such intensity since August. He is doing this his way, “pickin’ em up and puttin’ em down” as he said in his entry back in October. He does what is in front of him. Right now I feel so much better, have more energy and tend to start bouncing around , sort of like a Tigger in Pooh’s clothing, and he’s exhausted some times…. I have to use restraint which can be hard for me, to observe the space he needs. Even though I’m working a lot more, I’m doing it from home most days, so I can lose myself in the fire’s glow, or spend some time with a kat or two or three, or I can see that the bird feeder needs more seed, or lie down for a quick little rest ANY TIME. I have long periods of time where no one is asking anything of me, I am nourished by silence and am working at my own pace whether it is work-working, or healing work.

I guess today I kinda felt like a puppy, wagging my tail at the end of the day when B came in after a long day away. (Those of you who know us well will have NO problem visualizing that scene…especially with my new groovy colorful hat with the purple bells.) This morning he woke and took A to work out together before school at O’dark:30. He dropped her off at school and went to work, and did his usual noon workout. He left work at 4:30, picked A up from wherever and came home. He ate dinner and went out at 6:30 to be a scout master for some 15-20 young men in our town until 8:30. He may argue that he is not “exhausted”, maybe it’s me whose exhausted watching him do his thing.

It felt good to serve my family a home cooked meal (enchiladas are challenging for me and I keep trying new ways to get them so they are not just a pile of yummy mush…if any one has a tip, please share!) It felt good to get HIM the hot water bottle for his HAM of a hamstring that just won’t quit. It felt good to LEAVE HIM ALONE when he decided he needed to go to bed before me (quite rare). Of course, being the me that I am, I’ll sneak an ultra warm snuggle when I finally quit, so the longer I put off going to bed, the warmer it will be under those covers.

What’s my point? I guess my point is just as B has had to do what he could do for me during all this, he could not take away what was mine to do. He has his own row to hoe in this breast cancer trail that we’re on, his own horse to ride. I can’t do it for him, but I can be nurturing when I have it to give and I can observe his needs and respond accordingly, if I can control my Tigger-Poohishness. Even with that challenge, I’m so happy that I am experiencing this today.