Life – Page 4 – Riding a new Horse

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.

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!

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.

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.

R-2-C-11-D-1-150x150

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.

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.

Paint the fence, wax the car

B: Tiresome. That is what cancer has become. Not tiresome in an angry or frustrated way. Not tired in an exhausted sense, but in a tedious way. At the outset the newness, the fear, the urgency, pushed treatment along. It was hard to keep our eye on the ball, because we were jostled and bounced around. Now it is hard, for me at least, to keep my eye on the ball, because I’m dozing off. Literally. P, is starting to show cumulative effects of the chemo. But how many times can we write about her going to bed early? Or working from home to preserve her energy? What does it mean to say that cancer treatment has become boring? It still takes up a big space in the room. We still care a lot about the outcome, and daily, even hourly, we check in with P. But treatment and living with treatment is tiresome . A while back, I mentioned a metaphor of hiking switchbacks and I think that was really apt.

For me there is a nervousness that goes along with boredom and feeling dozy. I snap awake with a jolt of adrenaline, starting and flailing about a bit as I try to re-orient. We aren’t out of the woods yet and so I don’t want to relax too soon.

P: Marathon, switchback…you pick. Endurance.

Just as I started getting back in the swing, hair growing, going to work, more active, I must slow the pace. Hair has slowed, and some has fallen out. I need more naps. OK. We can do this.

Yea, I’m tired. No entries all week. After 8 weeks of infusions, we are noticing more the cumulative effects of treatment. On Thursday after dinner I just put on my comfy clothes and crashed. From my vantage point I slept very soundly. B said I was a bit restless. So much of life feels normal to me. I ‘m up and going to work every day. I’m cooking sometimes. I’m skiing on the weekends, doing chores during the week. Going to book club and staying out “late” with my pals. I’m actually reading and finishing books. The part that does not feel normal is the fact that it feels too good to close my eyes at any time of day.

I am grateful beyond belief that I can work at my own pace and from home. I’ll catch up on what I slept through this afternoon, tomorrow or on the weekends.

I can muster up energy most of the time. For example, I could go skiing again today. BUT I’m deciding to stay put and conserve. I just know that it would take a lot out of me trying to stay warm with sub zero wind chill. My friend L who has much experience with breast cancer treatments has talked to me over and over about the conservation of energy. It’s really the long haul thing. I could fool myself into thinking that an activity would be fine, but it all seems to add up. I find myself wanting to be active and yet aware that we still have 4 weeks of infusions left, and my body is not recovering to normal before the next invasion hits. B came home Thursday and said “We had ‘fun with weights’ today…my favorite workout!” He was all sweetness and light, it was so cool. I wanted to hear every detail…from the recliner. I’m finding that the day I tire most is on Thursday at this point. It seems that the effects last longer and longer after each infusion. This is something we saw back in the fall with AC, but it felt more dramatic with that powerful cocktail.

As far as other stuff my gut just doesn’t feel right. I don’t really know how to describe it. I don’t feel nauseous, thank heavens. I do have an appetite sometimes. It’s like my digestive system is tired and working really slow. I’ve been taking Rhubarb 17 and Diagnostic Tablets (both herbs) which help sometimes, but definitely not completely.

Fatigue, gut awareness and pressure in my sinuses behind my eyes are the biggies right now. My skin seems to be in good shape, probably because I’m just taking care of it better than I ever have. (Thanks to the sweeeeeet care package from my niece D, full of good things for the bod.) Flesh wounds take a little longer to heal. On the other hand I have been humming and singing a lot. I feel happy and silly a lot of the time. We have been laughing a lot together. I’ve been so in the moment it has been wonderful for my spirit.

Love continues to pour in, cards, calls, prayers. Thank you for sticking with us, readers. It really helps. I don’t know if you know just how much.

Transformations

CIMG9411-150x150

During today’s infusion there was someone who was a few chairs away, behind me. This person was apparently really struggling. I was only peripherially aware of this as I had my ipod on and was tuned into my niece V’s gift of songs which are really fun to sing to.

We have mentioned several times that at chemo, we have observed quite a range of human coping and suffering. Some people go to treatment in their sweats and slippers. Some bring stuff to do. Some lay back and rest or sleep pretty much the whole time. Each chair has its own television, so some are tuned in to that. Most dialogue is private but there is usually a hum in the air. I pretty much say hi and smile to anyone whose eyes meet mine, but basically I tune into my stuff. I dress partially for work with a matching shirt from B’s closet and always have my cowboy boots on. (I wear B’s shirts both because they are comforting and it’s much easier to access the port-a-cath with a button down shirt on, which I don’t have many of.) You’d find me content I’d say, usually singing silently as I work on my lap top or drawing. Occasionally I read.

Today when this other patient’s lament came into my awareness I kept my music on as I wanted both to afford this patient some privacy and honestly, I didn’t want to be dragged down. When the nurse checked in with me she asked if I was ok with what was going on, and all I said was that I was sympathetic to the patient’s suffering, but didn’t know if I could do anything for them. This is really important for me to write about here. Unlike the other chemo cocktail I was on, with this one my defenses are mostly still in tact. Keeping my stride during this marathon includes looking over my armour for any areas of vulnerability. Finding the balance of compassion for others and self care is always important to my well being. In having compassion I am able to do what I can to send energy out. This is what I CAN do.

This patient was going through a transformation just like I am. I think if a person observed me they would see someone who really looks like she is content…maybe enjoying herself. Music transforms me. Art transforms me. Being able to reestablish myself at work is part of what makes me feel productive and useful. Love transforms me and we know there is so much of that free flowing into our life. Pain transforms me as well.

Right now I feel like I’m in a time warp, an incubator of sorts. Today’s drawing is about that. Physically I’m feeling good. No nap this afternoon. I left the infusion at 11, went to work for 2 hours, came home, finished the funding application (YEA!!) and have been working and taking breaks since. It’s a really rainy afternoon, and aside from grief over skiing conditions, I’m doing well and plan to retire early after a nice long shower after dinner.