February 2010 – Riding a new Horse

Farther away as you get closer (reprise)

It is day 7 cycle 12. That means tomorrow is day 1 of life after chemotherapy. Each day is one step closer to being farther from chemo. I’m grateful for chemo, and I’m grateful to be getting away from it.

I was just reading about nail issues during chemotherapy. Paclitaxel (Taxol), as any chemotherapy drug, is known for certain side effects. I was wondering if I was experiencing early signs if Peripheral Neuropathy, but have ruled that out for now. As I researched what could be going on, I have come to feel very grateful that I may recover from what I’m experiencing. Here is some information that has been helpful to me:

Paclitaxel is a chemotherapy drug that is given for breast cancer. Also called Taxol®, it is part of the drug class taxanes, which includes docetaxel (Taxotere®) and Abraxane®, which are made from Yew trees (genus Taxus).

Nails may darken or turn yellow, become brittle and crack easily. Six or more high-dose cycles of taxanes may cause nails to fall off. Dark or light lines (Beau’s lines) may develop across the width of some of your nails. Nails may develop a concave, spoon-like shape (koilonychia). Infections under your nails are also possible. If your nails are becoming loose, they may become quite painful. In some instances blood may collect under nails and cause them to fall off. (There was a picture of this, but I’ll spare you.)

I just feel for people ya know? The medicine that takes care of one serious thing, makes one either sick or in pain or even disfigured to a certain degree. I have been very fortunate in this regard.

My hands are something I’ve always liked, and as my nails started to change in very subtle ways during this treatment, I’ve tried to keep up with TLC. The way I have been effected is that I’m experiencing some tenderness in my nail beds. I’m at an advantage because I’ve never used artificial nails, nor do I put nail polish on. This might have compromised my nails at the start. It is recommended by some to use clear polish to help with nail strength during treatment with taxanes. I have not had nail strength problems, thankfully. They just hurt on occasion, and I have some subtle indentations which could be Beau’s lines, and one dark stripe down my index fingernail. Yay for herbs, good italian genes and a fairly healthy diet. I give these credit for my relative nail health. I also must credit my goofy family, katz and friends. That’s got to have SOMETHING to do with it, fer shure.

I’ve been aware of my own self consciousness of late. My hands are not to blame, they actually look pretty normal. Sure, I’m still wearing doo rags (weird hair growth patterns and cold head are to blame), I do get tired of that, but I’m dealing. You may recall that I mentioned a friend for whom eyebrow loss was the most difficult to deal with. I know how valuable eyebrows are to the whole facial scheme, but I never thought about what it would be like to be without them. You know those eyebrows that make you say “WOW, how does he grow them like that?” Well right about now I’m cheering those bushy eyebrow growers on, and trying not to salivate in envy when I’m near them. I’m just so excited that my folicles will soon be in production again, it’s rediculous.

Stretching is always good, and I’m finding that the best place to keep stretching is in a nice warm shower. My range of motion is quite good at this point. There is some sensation where there was not along the surgery areas. I am aware that there will always be some numbness. Scar massage and stretching extra on my left side are part of my regular routine at this point.

I think this week has gone well for me. I’ve felt remarkably well, taking care to chill out before I needed to. I think there is also psychological advantage of knowing that the chemical bath is over. I’m so excited about NOT having anything of that nature going into my body tomorrow. Recently I’ve forwarded this blog address to others who know someone who is about to go through treatment. I feel excited at the possibility that maybe a bit of our story may educate or be helpful in some way. I also have noticed a feeling of humility in that it’s just our little story.

There will certainly be more installments in the “life after chemotherapy” chapter. I just wanted to get some of these thoughts down. We are now in the recover phase as we regain strength for radiation. I say we here because my family and loved ones are also recovering. The compassion fountain needs rejuvination too I’m sure. Next milestone? The simulation is on March 9. Stay tuned!

Bravo

Thank you L for the surprise visit. Thank you for the rose and pussy willows. Thank you for playing the harp for me as I drew the final panel AND for your gift of music for all who were there today. Thank you for your support. As a sister-in-the-know your story provides us with an experienced lense to look through during all of this. Thank you for being part of the clinical trials years ago which make my treatment probably easier than your own.

Thank you S, cancer center volunteer, sister-in-the-know, who celebrated 5 years out during my treatment. Thank you for bringing your sweet dog around to all of us, her energy is so therapeutic. Thank you for your gift today. Let me explain: S brought me a box and told me that she just had to share something with me. When I opened the box and we looked at the angel figure (you can’t really see her wings here) and at my drawing we shared a glance and a smile. There was no whiplash.

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Incidentally, I was given a different angel of this series at the start of my treatments. She’s holding a lantern which has illuminated the dark times. (Thank you to another S for that one!)

Thank you J, patient navigator, for dropping by to show me your artwork and for talking art with me. I look forward to lunch sometime.

Thank you K, my very own nurse. Our conversation today was poignant and heartfelt. The ending of this treatment is bitter sweet. More sweet than bitter, because I know where you work and will certainly fulfill your wish for visits.

Thank you volunteers and nurses for the great balloon that you signed. The katz are playing with the tail and E wants to suck the helium out of it, but I’m not ready to share it. Mostly thank you for all of your TLC. You are an excellent staff.

Thank you friend S for taking me out to lunch, for the flowers and card, for your attention and our growing friendship. It was lovely to receive your celebratory energy as I walked into the restaurant. I can’t wait to make you a cheese bread!

Thank you readers of this blog for supporting my artwork. This particular series was so exciting to do and return to each week. Some waited with baited breath for the next panel, and the anticipatory energy was really exciting for me. The finished work is 10″ in diameter.

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I was also working on this pic of my boots since the beginning, it was the other part of my view during the infusions.

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Thank you B, A, E, Chang Tzu, Guiseppi and Sofia, friends, family, loved ones for helping me through this particularly challenging part of the journey. It feels like a big chunk will soon be behind me and us.

Thanks Body for tolerating the invasions. This part is almost over. Each step we take this week will take us beyond the 7 day cycles we’ve been on for 3 months. Bravo.

Uno mas

I spent last night at home, just me and the katz. A had helped me put the first coat of paint on the bedroom yesterday and this morning before my 8:00 walk with D, I put half of the second coat on. I managed to fill my day with putzing and being outside. Now, with angel made lasagne in the oven, I’m ready to put my feet up and call my putzing complete. I love the color of the bedroom and was so happy to hear B’s reaction after he and E returned from cold camping.

At this point whatever was going on with my foot is much less, and after talking with my loving-angel-nurse-friend I feel better about the fact that it may not be Taxol induced. I’ve read that “Taxol toes” can occur even 1 year post infusion, so I’m not resting on my laurels, but each day that I’m not experiencing symptoms is ok with me.

Today my brother called to celebrate tomorrow being cycle 12 of 12. He asked if he was making a bigger deal out of it than it really was. I assured him that it is a big deal. Remember when the oncologist said that there would be 12 weeks of Taxol after surgery and thinking that 12 weeks was a heck of a long haul? And now here we are on the doorstep of #12. I’m excited for so many things. The last Benadryl. The last pre med that prevents my digestive system from doing its job. The last of a chemical that can burn my skin being put INTO my vein. I’m excited to meet my pal at the restaurant to celebrate after the infusion is over. I’m excited for every day after the 7th day because I will be the farthest away from chemotherapy that this bod has been in 3 months. I’m excited for my family at the THOUGHT that we’re that much closer to the end of treatments. I’m excited to have a Monday that I don’t go to the lab. I’m excited to put goodness into my body and not have anything take it away. I’m excited to plan a visit to visit my Mom whom I have not seen since December. I’m just excited to be able to plan something and feel relatively sure that I’ll feel “up to it”. I’m excited as we start talking about a real vacation this summer.

I know the treatment marathon is not over, but this is a big chunk.

Tired

I left work early afternoon today. I just could not keep up. Came home and slept for like 4 hours or something, I don’t know. Something is going on in my left foot. I’m not sure if it’s a sign of “Taxol toes”, but I’m going to check with the oncologist before the next/last invasion. She may cancel the last treatment if she thinks it has anything to do with the effects of the treatment. I also managed to catch a slight cold.

I’m trying to orient a new staff member at work, and feeling sort of dazed at times. So I’m cutting back with work at the same time trying to corral the troops to give this person a decent orientation. It seems that working at home more often may be in order, which is fine with me. I’m painfully aware of my decreasing earned time bank (my employer’s term for paid time off), and will just have to deal with it. That’s what savings accounts are for right?

A asked if I could take her to the city this weekend while B and E are camping. Normally we’d make the plan and go and have a fun time together. Today I had to say “Sure if I’m up to it”. It’s disappointing for both of us. When making plans now, I include the caviat regarding my energy.

I feel peaceful, but definitely am experiencing a different level of fatigue today. I think I’ll read for a while. See? Even Winnie the Pooh has days like this. Maybe some tea with honey too.

Eye on the ball and living in the moment.

Cheesebread really comes out better when you let it rise two times. I was making the bread yesterday for the staff at the cancer center and A asked if I would make one to go with the soup she was going to make for dinner. If I let the family bread rise twice it would have taken too long and the meeting B was having at 7 at our house would have bumped into dinner time. SO I let OUR bread rise only one time. It was tastey, but the second bread was BEAUTIFUL. I bagged individual pieces this morning and put them in a life is good bag and handed them out to the secretaries, nurses, vounteers and technicians at the center. Today is Presidents Day and the center was to be closed for the holiday except they had too many medical oncology patients to accommodate and thus some staff came in to work. The other parts of the center were closed. It was just the right day to bring a gift of gratitude. They were so appreciative and if you’ve ever had Nonni’s cheese bread, you know why. It’s the ultimate.

All went well. Several “special” folks came to me to comment on this being #11 of 12. We started talking about the transition and saying good bye. It was really natural and groovy. I wore my favorite blue Keen shoes with no socks as it felt like spring to me. I didn’t feel like I needed ‘tallitude’. Several came to see the drawings I was finishing up and, of course today’s panel.

I walked in the house after the grocery store after the infusion and E said “wow, Mom, you look tired.” I said “yea, I ‘m going out for a short walk with D to get some fresh air and move my body and then I’m going to cool it for a while.” He brought his bike along with me and ended up going to hang with his buddy, who happens to be D’s son. I went further than I intended to but felt so much better after fresh air and wonderful conversation. And now me and the Kat-man-doo, our big siamese are hanaging and resting. It will most likely be just B and I for dinner which is perfect.

All’s well. This is Round 2, Cycle 11, day 1. These cycles are 7 days. Pretty soon I will have a day 8 which will be the furthest away from chemo that I’ve been in 12 weeks. Just the thought of that makes me smile. I can do this.

Just Thinking

When I think about the journey so far, the thing that is dominant in my mind is love. I am not cancer. I AM loved. I feel it with my family. I see it when I read back in this blog at the story we are telling. The entries from B, A, and E are part of a love story. I see it and feel it in the comments made by supporters and loved ones. I hear it from others who are keeping up with the blog like it was some form of life support. That actually humbles me to the point of speechlessness. When someone refers to something I said in the blog, or tells me they finally got “caught up”, or that they are keeping up with it, my loquaciousness dries up like a dusty old tumbleweed and blows away.

I struggled to come up with something to write about today. I wanted to let readers know that breast cancer treatment is not ruling our lives most of the time. We are into our ‘normal’ which can be mundane at times. Since this blog is about the breast cancer trail, writing about normalcy during treatment seems apropos, but I don’t want to indulge myself too much and start treating it as a place to dump all the things that go through this brain of mine. No, no, definitely not. (This is to be said with the inflection of Mr. Olivander who was trying to find just the right wand for Harry Potter.)Someone may be compelled to perform experiments on me or something to see what exactly is going on in there.

Tomorrow is the second to last infusion of 12. I am beginning to think about what it will be like NOT going to the chemo suite and talking with the people I’ve developed friendly relationships with. My thought at the beginning was one of celebration, the good riddance syndrome comes to mind. But chemo in all of its chemical-ness, has helped me more than it’s hurt me. Oh, I will NOT be sorry to stop infusions. I won’t miss hearing the rhythmic timing of the machine that regulates the drip. I won’t be sad to say fare the well to the various and sundry manifestations of a body on chemicals. I AM struck by even the suggestion of the thought that there might be grief associated with the end of chemotherapy. Here I sit thinking about making a cheesebread to take to the chemo suite tomorrow as a thank you. It’s not my last infusion, but there are people I’d hate to miss if they are not working on that last day. I know I’ll be at the center for radiation in a few weeks, but this feels like an ending to acknowledge. There is a drawing I’ve been working on all along which I have not published, that may be framed as a donation. We’ll see.

The people who have worked on my treatment team, most specifically at this point on the chemo side of things, have been respectful, consistent, tender and real with me. They have many patients to deal with; some who are very sick, some who emotionally unravel in the chair, some who die. I feel like when I’m there we are chatting over a cup of tea or something when they come over just to see what exciting things we may have done over the weekend or tell me about the color they finally chose to paint their living room. I may be getting ahead of myself here, but I’m awake and aware of this feeling. I think it’s time to make some bread now.

Manifesting energy and making lemonaid

It’s like the problems with the port-a-cath are a thing of the past. By living so in the moment, I have had the good fortune to celebrate with the nurse when there is good blood return. I either have to get a life, or I’m doing something good for me. Celebrating anything is good for me.

You know the whole thing about not wanting to jinx something by saying something? Well tra la la to that. I just have to say it’s wonderful when there are no hitches. My energy has been plentiful all day. My spirit content and very much in the moment. Symptoms are relatively manageable.

Yesterday D and I got our arses in gear and took our hour long walk on the road. It felt great in so many ways. Moving is good medicine for me. Today I was a good girl and went to chemo, went to work until about 2 (had some wonderful and funny women doing walking lunges in the hall after supervision), went home, worked more, and went out at o’dark:30 in the PM with D. It was unusual walking into the dark rather than into the light, but man we both felt great. That I have energy to do this is something for which I’m truly grateful. And D, I am grateful for you. Thank you for loving me and meeting me at all hours of the day, in the freezing cold and in the sweaty heat of July for the past 10 years.

Today’s image, as the last few, just poured out of my pencil box. It is oozing into the next panel, and I just went with the energy. Now that I can fathom the last infusion, I feel much more fluid. The beginning of this round was much like starting a labyrinth. Knowing how AC affected me, and hearing so many different reactions to Taxol, I wasn’t exactly going in blind, but I certainly found that I was kind of peeking around corners to see if the symptom fairy was ready with her stinger. The first image, if you recall, is very static, and illustrates this feeling well for me. I was open, but certainly not fluid, in hindsight.

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I’m totally drawing about rebirth. B says that we are finding a new normal. My plans for drawings rarely materialize. I chose to let my energy, my hands and the colors tell the story, not my head. The still quiet of the previous panel was certainly not the energy today. I’m moving, I’m doing, I’m resting, I’m holding on. It’s a little on the edge of risk which I love. The bedroom project is on the front burner again. I’m feeling competent at work. I have no room for negativity and self doubt at this moment. It feels good and right. It felt great to go to sleep last night, it feels great to be awake right now. I’m getting lost in music, finding myself just dancing in the kitchen or singing like a rock star in my car.

I was talking during our walk today about the whole reconstruction, prostheses or nothing issue. I continue to feel that for me not doing reconstruction has been absolutely the right move. I’m still doing scar massage, so intrigued by the sensations that DO exist and those that don’t. I’ve given myself time with this new body with no intrusion and that’s been right for me. Everyone has to find their right. Rushing into a decision I was not at all ready for, and not convinced that I even wanted, would not have been true to me.

If reconstruction gives me a perky breast, it’s 47 year old partner will not be able to keep up if you know what I mean. Even if I become a work out fiend when this is all over, breast tissue just is not muscle, and without external cables or a good underwire, I cannot imagine symetry will be sustained as the years go on. The potential hassle and risk of reconstruction for one side which will never have sensitivity just doesn’t fit for me. I’m thinking more about talking with the “fitta” and just doing some dry runs . This for me is mostly about clothes fitting. Summer clothes, I mean. I could go with the non fitted sort of summer stuff, but I don’t want to overlook the possibility of symetry as well. If I find stuff that can work with an asymetrical shape, I may just go that direction. It’s my body and I don’t really have a need to hide anything. Sure, it would be nice to get attention for looking good in my clothes, but I get the attention I need most of the time from the people who matter to me most. The way I look has never been the most important thing to me. My good friends and family know I’d rather wear warn holey jeans and a t shirt that’s been through the wash a few hundred times.

This is the reality of breast cancer. I don’t need to be a poster child, that’s not my mission here. I want to be comfortable with myself. That IS my mission. I will talk with some women who have gone with the body as it is and will let you know what I find out. I love hearing how others have coped as we look at our new normal. Cancer and treatment are no fun at all. What remains is what is. I’m making lemonaid.

Appearances

My hair is sort of coming in and falling out and light on the top and dark on the sides and really fuzzy and funky. I get tired of wearing stuff on my head, but really need it there for warmth. My thermostat is just in malfunction mode at this point, and most of the time I’m really cold. My eyebrows never really fell out completely and seem to be thinning again. I am really interested in how mindful I am of the hair stuff. Oh, I get by. I have hats I love to wear and some scarves that actually stay in place. I still have absolutely no interest in wearing a wig. I get tired of having stuff on my head, but cannot do without it for long, purely for the heat retention function. My friend and sister-in-the-know said that losing her eyebrows and eyelashes was the worst of the worst for her. While I’m not completely bald in those places, I’m definitely not bushy. It looks like some features are fading away when I look in the mirror, and that’s just weird.

I went to a party last night where a bunch of people dressed up all groovy and 60’s like for a friend and colleague’s retirement celebration. I went straight from work, having grabbed our Marti Gras peace sign beads from the cabinet in the morning. So I sort of looked like I was groovy. (I mean I’m always groovy, but you know…) My doo rag was among several others, and I was loving that. I hadn’t seen these folks in many months, several of whom have been in the stampede with us. It was wonderful to be with the celebrant as well as others and to feel so good at 6pm on a Friday. I was fortunate to receive warm welcoming hugs from many people. Someone I had not seen in a very long time, (like 2 years) who also apparently has not learned of our ordeal, was sitting across the table from me when we sat to have dinner. When we made eye contact she said something in passing about my appearance, not thinking twice that anything was up, and immediately went on to talk about our mutual work interests. She had no clue. But I did think about what affect such a comment would have on someone feeling more vulnerable than I. She meant no harm, that I have no doubt about. She was happy to see me and we had a great conversation about what we were up to on the work front. I actually sort of made a quick evaluation about whether to “go there” with her, and decided not to. We were having too much fun.

What she said exactly is not important. She did make me think. When I left the party, I wondered about what, if anything, I might say to a colleague if I saw her having what might look like obvious chemo effects or perhaps something less obvious. “I notice that you have no eyebrows, did you have another bout with the wood stove?”

I do love it when someone notices my sideburns and wants to see the latest mutation of hair. It’s like they are the hair folicle cheerleaders. Come on, you can do it! I enjoy the indulgence when people fuss over stuff like that.

I think what people see in me is someone who is not necessarily set back by an obstacle. They see something beyond my appearance. They see the G.D. optimist each time I show up somewhere. They see someone living in the moment. There is no dwelling in this reality for us. That’s why when I chase shiny things I don’t look back. You should see me during firefly season! It makes B crazy sometimes. Like this morning when I started making breakfast and something shiny caught my eye…

Hi…

I really don’t have any clue what my mom is talking about. I never sing. She probably just has her iPod in listening to her funky tunes, and mistook those voices for my own. Funny story! My dad told me a joke. An older, kinda dumb man is sitting at the bar when he realizes that he’s gotta fart (bleck! I never do that either). He realizes that there’s music playing, and figures that at a loud part in the song he can take care of his business. So a loud part comes, and then he slowwwwllyyyy lets out a fart. He does this a couple time until he’s much better. He takes another sip of his beer– feeling pretty smug about himself, when he notices everyone in the bar staring at him. He turns around to give them what-for…. and a headphone falls out of his ear. See! It can happen to anyone!

I know that my mom would really like me to share some of my experiences in dealing with breast cancer. I don’t really know how to describe my experience without sounding ignorant. I used to read books about cancer victims all the time. It was something I never believed would touch so close to home. When I first learned of my mom’s diagnosis I was shocked, a little pissed, and sad. I was mad because my mom had never done anything to deserve something like this. No karmic baggage. But really, I was just sad. The word cancer has an echo that sounds just like doom. However, in all this emotion, never, for one second, did I believe cancer could take my mother. She was not going to die from it. I refused to believe it, and that made everything a bit easier for me to handle. I know death is a part of life. I realized that in fourth grade when I was reading a magazine where a body of a 16 year old girl was found on a hill in South America, a sacrifice. It was a weird experience. Kind of difficult to explain. But for my mother, death was not an option.

Sometimes I forget. She’s a tricky lady. She’s so loving and optimistic.I don’t know if this cancer has changed us as a family. But I do know how much love and support there is out there for my mom, and our family. There’s so much love. I want everyone to know that I appreciate everything they’ve done to make my parents lives easier. They’re stuck with two teenagers, and we can be very demanding. Emmitt’s the worst, I swear!

Thank you so much.

I love you Mom.

Enjoying “A”

As I was writing the entry below about the recent infusion, A and I looked like dualing laptops at the dining table. We laughed as she played this game over and over and over singing and singing random songs at the top of her lungs. Her eyes were aglaze. “I can’t get out of this!” You know the feeling you get when you play whatever game is your favorite and just cannot stop telling the darn machine to start another game and you say something like “ok after this one I’ll do my work.” It’s funny to see such an intelligent and at this point motivated young woman mush out sometimes.

She reached over and grabbed my hot cup of tea for a sip as she looked at me with loving eyes. As her lips touched the cup, I told her it was called “smoothe move tea”. She gave the cup back unsipped. B tells a story about when he was in school and some kids kept stealing lunches. So the victim brought chocolate chip cookies in with ex-lax in place of the chocolate. I just could not let her take a sip of that tea, but it reminded me of this funny story of B’s.

I have a really hard time concentrating when there is noise. Sometimes I want music, but if it’s too “bumpy” I just cannot wrap my brain around what I am trying to do. Most of the time if I’m reading, working or writing, I need silence to be able to focus. My daughter, on the other hand, has to have her phone right next to her computer which is playing music and/or videos, a video chat session going and her homework in front of her to get the job done. Have I mentioned she’s a straight A student who, when she entered high school struck a deal with us by saying “If you don’t ask me about my homework, I’ll get it done.” ? So it’s now been about 50 minutes since B and E left for their activity, and the singing has NOT stopped. In fact she has ended video chat with a friend because she just wants to keep on singing and doesn’t want anyone to see her like this…except me, of course. Before B left I kept looking at him and he knew exactly what was going on for me. This is what choosing my battles is about. I could wreck this experience by being cranky about not being able to concentrate, but I’m having too much fun to do that.

For A to say “are you writing about me and my singing?” and to suggest that an entry get devoted exclusively to her, is remarkable. She does not like to talk about breast cancer, and usually does not want me to talk about her to others. At the same time, she is sympathetic most of the time, sensitive to my needs and tolerant of, though not always liking, what is going on. She helps me see when I am being irrational or too sensitive about things. She is a good mirror for me.

How strange it must be for teenagers to deal with their mom’s breast cancer. At a time when their own bodies are weirding out and doing amazing and beautiful things, their mom’s body is being ravaged by something out of her control. Their parents are dealing with a very real and intimate bunch of complex issues. Dad may be scared or at least feeling powerless. Every day they are reminded. For months and months treatment is in the middle of the room. Mom’s body looks and feels different. They are cheerleaders as Mom’s hair grows back. They are unconditional in their loving acceptance of this person who doesn’t look anything like she used to, and who is not able to keep up the way she could last winter. I do not know how families deal with a dad’s breast cancer. I’m sure it has its own story.

If there are things to be grateful for in this pile of dung, one would be that A is 15 and not 5. She has a life, she has interests, she has some maturity, and she is incredibly independent and creative. Oh, I’m sure if she was 5 there would be gratitude as well. I am just so glad she was the little spirit in line next when B and I, well, you know. I’m so glad she was born into our family.