Ruminations – Page 5 – Riding a new Horse

11/3/09

Today I went for a Post Op Camisole fitting…it’s a sexy garment that I get to wear after surgery until the drain comes out. Talking with others who have been through surgery, the improvements over the years caused a bit of camisole envy I think. There’s even a pocket for the drain. The “fitta” was really swell. With 25 years of experience, I felt in good hands. It was a 20 minute ordeal, covered by insurance…and I learned that new undergarments, if I need / want them, will be reimbursable as well by insurance. Well worth the almost 3 hours of travel. I felt like a big girl. I actually went to this appointment on my own.

I have the fortune to have wonderful women who are nurses in my support group. Some of them have lined up for the first 5 or so days post op to pay me a home visit, check me out in my new lingerie, and make sure everything is doing what it is supposed to be doing. This gives B some professional lenses to look through, and I think he is relieved about this. That’s so important to me. They didn’t even blink (well I didn’t see them actually) at my request.

Speaking of B. This time of year, especially hunting season, is a time of rejuvination for him (my words). Something happens when he is out in the woods that nourishes him. He takes a lot of time off from work and goes out just before first light. He comes home tired, smelly and content…usually with some stories to tell.

I have been excited because it is his time to get away and not be thinking about breast cancer. SO hunting season started Saturday. He left the house at 6 AM or so. At 9:00 he called me to tell me he filled his tag. I asked why he did it so soon. He said he had “to focus on breast cancer”. I said “you better get your arse out in the woods this month or I’ll lock you out of the house”. What do I do with this guy??

Phase 2: As chemo ended and talk of surgery begins, I have found myself contacting other women who have been through this. The 5 I have spoken with thus far have been more than eager to share their stories, and listen to the choices we have made. I’ve been eager to hear about what they were thinking and feeling during the whole process, and how they feel now about their choices. When they have said that they think we are making the right choice, I cannot tell you what a relief it has been. When I talk with these women and they nod their heads, I KNOW they KNOW what I’m trying to say. This type of support when I’m feeling like I’m in a sea of my own is so grounding for me. Because of their journey, my journey has been made easier. They did the clinical trials upon which my providers are drawing to help us make the best decision. In speaking with one of my nurse friends, she said “if you didn’t make that choice, I would have been bouncing up and down inside and would have figured a way to tell you my concerns…”.

I am having a hard time finding the words to express what it’s like to have people care about me and us so fiercely.

Today I have felt as close to normal as I have in a long time. I’m still tired after about 3pm. I am still taking time to rest. I’m choosing to work from home instead of in the office most of this week, and not working more than 20 hours. My throat does not hurt any more. I have patches of dry itchy skin that are eased with skin cream. THIS I can manage….and we don’t meet with oncology again until the 24th. If every day I feel better, maybe I’ll have the stamina to hear about the next phase when it’s time. My eye is on the ball.

11/1/09

I’ve heard from several people that they were chomping at the bit waiting for the surgery news. Several loved ones told me/us that they were checking the site throughout the day on Monday to get the skinny. The analytics site told B that the viewing of the site peaked incredibly that day.

We were intentional in our writing of “the conundrum”. Intentional in the time we took to let it all sink in. Intentional in waiting to write until we had some of our thoughts and facts in order. We wrote separately and looked over each other’s entries until we felt it expressed what we wanted to communicate. Sometimes I sit at this computer and just write. I call that journaling. I may have referenced that before somewhere. I just close my eyes and let my fingers communicate to the document what is going through my brain. This I do when I feel overwhelmed, cannot think straight, cannot sleep, or when I just have to get something out of the circuitry. This information is too raw for me to have floating in cyberspace. It’s also information I may never want to read again.

I understand now after a long conversation with R, Brother #1, (and D in the background) the other day that they were very interested in what I/we put in the blog, but were unaware of the extent of the discomfort I was going through. Do you know the feeling of loving someone so much that you want to know about all the gritty details? You wouldn’t believe how many times I edit and edit some of the entries before publishing. When I am feeling on the low end I have no desire to do intentional writing or draw or anything that would suggest being in the moment. I’d rather chop wood and carry water to get the circulation going. But I’ve had a few people help me get to the nitty gritty, the depth of the sad or discomfort, and this has been necessary to help me move on at times. It’s a delicate balance at times, to honor what I’m feeling/thinking, and not get caught in suffering.

So what’s the point in what I’m writing today? If this information is going to inform and educate loved ones and others who may be going through this, it’s important to include some of the nitty gritty, I think. Somewhere I or we mentioned that this last treatment knocked me for a loop. I want to try to describe that just so you understand that I’m not just marching through this unbruised. I and we are getting through it the way we know how. I don’t think it is necessarily either honorable or brave. It just is.

I’m still in the 14 day window of the chemo cycle that I’ve been in for 8 weeks. I was told by others who went through the AC (Adriamycin and Cytoxan) chemo regime that there was some cumulative effects as treatment went on. Each woman had different things to say about how she was effected. Let’s see, I’m on day 12 today. I am still dealing with a ‘not quite up to par’ feeling. Every day seems better from the previous, but it is not as predictable a climb out of the hole, and sometimes out of the blue I feel crappy. I am trapped in this body that I think is anticipating another infusion in 2 days. I have times when I think I’m nauseous and if I eat something I feel better. Sometimes that does not help. I have times when I just need to close my eyes. Sometimes I nap and sometimes I just do the sensory deprivation thing.

I have been fortunate that I have not had significant mouth problems. Some women I’ve spoken to have gotten terrible sores and infections in their mouths and throats, yeast infections and other painful stuff. I was fortunate that my dentist office had a cancellation like 2 days before the first infusion. My 6 month cleaning was scheduled in the middle of the chemo schedule and I was told not to have cleaning during the treatment. It was not safe for me, nor would it be safe for my dentist or hygenist because that stuff stays in my system and is just not something that should be aggrivated (my interpretation). Fortunately I got the call to come in just in time, and check it out, my insurance company PAID for the cleaning and it wasn’t 6 months from the last…almost, but not exactly. Usually they will not fork over a dime for an early cleaning. My mouth feels weird. I cannot taste well. I am really sensitive to extremes in temperature or even the slightest hint of spicey (darn it anyway), and it lingers. It hurts the skin in my mouth. When I yawn it feels as tight as a drumhead along the skin between my jaws behind my molars. My gums right along the tooth line feel shriveled up, sort of. I was told not to use any harsh mouthwash at all. Just salt or baking soda and water. I have to use as soft a toothbrush as I can find, and have to be vigilant about flossing to keep my gums as healthy as possible.

My skin is very itchy in patches. It’s typical for me to have banged up hands because of the shinanigans I get into in this fixer-upper of a house. The bangs don’t heal in time for the next bang, so my hands have a lot of character these days. I have to be careful not to get an infection.

The G.I. thing is annoying. Nausea sucks. 8 weeks of intermittent nausea makes me so self absorbed at times I can’t stand it. If I take the anti-nausea meds it’s pretty guaranteed that constipation is next. Which would you rather be on any given day, nauseous or constipated ? Anyone? Anyone? Fortunately the only day I had diarrhea was day one cycle one. Hot, cold or spicey is not good for my mouth OR my intestines. There are times now in the cycle when I don’t notice anything. There are times when I notice everything and if I’m not hearing good digestion sounds coming from my abdomen, I do some massages recommended by my acupuncturist which can really help sometimes. I want so badly to be back to normal that I may order stuff I should not in the mexican restaurant. Thankfully my family likes my choices and will help me clean my plate! I should just eat apple sauce every day, probably. I get excited when I have a good bowel movement. (God, I cannot believe I’m writing this!) One of my brothers was visiting and I came out of the loo cheering. He looked at me with that “I don’t know if I want to ask what that was about.” face. (You know, I can think of quite a few people in my life…including this brother…who would be eager to brag about such an extraordinary “event”.)

The fatigue is annoying. It is what it is. On most days, I get myself to bed by early afternoon, but stuff happens. Like our refrigerator decided not to cool the other day, so I called the appliance guy. He instructed me how to diagnose the problem, so instead of napping, I’m trying to save the refrigerator, unscrewing things to check out the compressor, pulling the guts out to see why the cooling that works in the freezer is not working in the fridge. Put the darn thing back together, food in coolers and hit the bed at 3:30. I don’t do well with later afternoon naps. Let’s just leave it at that.

Emotionally, I have found myself short tempered or overly sensitive at times and I just don’t like being that way. I’m ok with it because it just is what it is. I observe myself saying/doing things that I don’t like. I am truthful when someone asks how I’m doing. It’s such a loaded question these days, can you imagine? IF it’s a good day, I say “today I’m doing ok”, because today is all I’ve got. It’s all I’ve ever had, but it was easier to overlook the junk when most days were OK. I’m not as sad at this point as I have been. A, (15), asked me the other day when she was home sick from school, why I have been so sad. She was wondering if there was information we have not given her. I assured her she knew everything we knew. The sad is not about a bad outcome, at least I don’t think it is.

My hair loss has really been an issue to contend with. I think gradual hair loss must be hard…sudden hair loss is quite a whallop, at least for me. I don’t like not having hair. I’m dealing with it. I’m into the comfort-over-fashion thing (which is consistent with how I’ve been for a long time), and wear cotton hats most of the time. When I go to work I feel like I have to wrap my head so I take out the scarves. Seeing it flowing in the breeze the other day gave me a sense of something like my hair blowing, and that felt pleasant. It’s annoying to have something on my head all the time, especially because ALL of my hair did not fall out. I have the 6 o’clock shadow on about 60% of my head. It acts as velcro to keep the hats and scarves in place, which I have learned is a blessing. I walk around at home without anything covering my head when I get hot or sick of having something on. If I am outside, in the car, or out in public, baring my head feels cold and vulnerable. If it were summer I may have dealt with the vulnerability by now, but since I like being warm, I don’t really have to deal with it. Plus there are cool winter hats that I can wear now. When I had hair there was so much of it that serious hat head was a deterrant to wearing hats for too long.

The only other thing I can think of that is in that loop that I get knocked into, is my chemo brain. Yesterday I was at work and found myself talking with 3 other women. 3 out of 4 of us have had to deal with breast cancer. I think the odds are 1 in 8, so this was really a remarkable ratio. All of us were in our 40’s and 50’s. Is it premenopause, menopause, genetics or chemo that we are describing? Who knows, but geez, chemo sure exacerbates things. I was told it would put me into menopause, which I have not noticed yet. (What an entry THAT will be, I’m sure!!) It’s like I just cannot focus at all at times. It’s like it enhances my natural attention deficits. I really appreciate this. And I’ll have to give you a warning. It seems to be contagious!

SO as I re-read this, I am aware that I feel like I’m whining, but really I’m just telling it like it is. Truly, I’m not judging myself. I received a card (with sound) the other day that was PERFECT. It pretty much sums it all up. For those of you who grew up with Gilda Radner on Saturday Night Live, this will bring back a smile. We found the card/recording on YouTube, but could not find her live, so you’ll be looking at the front of the card. Thanks Roseanne Roseannadanna.

So that’s the skinny on what I deal with on a day to day level. I don’t blog when this is going on usually. It also MAY be that I’m having such a great normal day that I don’t think of blogging. Going to soccer, taking our son to a party, raking leaves, going to work, going out to dinner with my family, hosting six 15 year old girls for a halloween overnight… you know, stuff like that. I can understand from a concerned person’s perspective that silence can be interpreted that things are not going well. (Is the glass half empty or half full??) Please be assured, that if you are getting anxious, that you are WELCOMED to call us. If we are out having fun we won’t pick up. If “I’m depressed, I gained weight, my face broke out, I’m nauseous, I’m constipated, my feel swelled, my gums are bleeding, my sinuses are clogged, I’ve got heartburn, I’m cranky and I have gas” you probably DON’T want me to pick up! We both DO check email almost daily, so if you are curious, please just comment on the blog. It goes right to us and we will get back to you. You being in the know is important to us.

Today I am only tired and itchy. I feel on my way out of the hole. I have some energy, some appetite and am in a good mood. Thanks for sticking with me and us through it all!

The Conundrum

B: We’ve gotten happy news lately, and we’ve completed the neo-adjuvant chemo. Ironically this hasn’t been just butterflies and light. From what I’ve seen, P has been so focused on getting done with Chemo, that she kinda lost sight of the ball. We’ve had to deal with a lot more, and different, side effects this round than any previous — even the first round. It didn’t help that the doctors scheduled tests immediately after the treatment. So, days that should have been spent in bed were spent fasting and traveling to and waiting for tests, some more than an hour drive from home. Sure, the Oncologist dropped the happy bomb, that the cancer appears to be dead, but, she really didn’t help us understand what that means. I think that created a bit of false hope for P. Similarly, the alternative health care providers were too quick to jump on the good news and encourage us to question everything, all of which distracted us from the path we knew we were on. Point in fact Oncologists and Surgeons speak different languages. Many Medical doctors are not holistic in their treatments and it is unreasonable to expect them to be. Alternative health care has its contribution to make, but perhaps should remember that Surgeons and Oncologists are professionals too.

I think we are settling down and getting back on track but the past week hasn’t been easy.

P: Reference has been made to my being something like Winnie the Pooh… so when I see a hive dripping with golden honey, I’m there. Shiny things do that for me too. Brother #3 has consistently told me to keep my eye on the ball since I was diagnosed. He and our sister in law went through this about 9 years ago… B was right. I stopped looking at the ball and was distracted by the glitter. Almost like I was ignoring what I could see and feel.

We now have a bit of understanding that the PET scan (oncology ordered) looked at whether we eradicated the cancer. It looked at my whole head and trunk to see that nothing responded to the radioactive dyes they injected an hour before the “shoot”. The oncology ‘sight’ is set on this target. Did she prescribe the right ‘treatment’ for this intruder? Her exam confirmed the PET results. What she was feeling must have been scar tissue. From what we now understand, the PET results give no information to the surgeon except that progress has indeed happened.

A side note: Did you ever have a really weird day or a headache and think ‘I swear I must have a tumor the size of Chicago in my brain’ or something like that? Well I have no excuse now for those moments. We know that there is nothing growing in my brain (including new brain cells from what I can tell today). I’m grateful to know that I apparently don’t have a brain tumor. I doubt that PET scans will ever be routine as sonograms now are for pregnancy (don’t get me started on that one), but some people might like to know. OR perhaps not knowing is better.

We know that the surgeon ordered the MRI to see what exactly she was now dealing with. It is her job to get whatever we don’t want in there out. Her exam had a very different flavor than the oncology exam. Her feeling something still there and seeing the shape still somewhat distorted, though much more normal, gave her the first inkling that she still had a job to do. As we looked at the ultrasound pictures from before and after, and at the radiologist comparison of the two MRIs, we came to understand more. They were so specific to this breast cancer. Is what is left benign or malignant? How much lymph node involvement is there? We don’t know from the slices of images that the miracle of MRI gives us. We DO know that the radiologist saw a 4.2 centimeter mass in August, and now sees a 7 millimeter thing that may be the shrunken mass, or may have been obscured by the original very concerning mass. We do know that chemo eats away (in a swiss cheese sort of way) at the cancer, and this has happened successfully. The mass is more hole than cheese, so to speak.

One other thing that has became clearer is that the lymph nodes are a significant factor in the future of treatment. A biopsy occurs during surgery. The nodes get sent to the lab like a hot potato and analyzed to inform how many she should remove while I’m still on the table. She may get all the information she needs at that moment, or it may have to be sent for analysis, results in 3 days. Then she may have to go back in. SO reconstruction at the time of surgery would not be the best choice, because once a beautiful job is done, it would have to be cut open again. Once this analysis is done, we will know whether radiation is necessary after surgery.

I am writing all this down to hear myself think, and to give you some idea of how much we know and don’t know still. Each case is so unique. Kudos to all the patients in these waters and all of the people supporting them. Kudos to oncologists, surgeons and alternative practitioners. And kudos to whomever can help all of us navigate the seas between.

Surgery is scheduled for Nov 10. This gives my body time to settle down from the chemicals. I am grateful to think that I’ll be more than 14 days away from the last infusion a week from today. It’s been 8 weeks since I’ve had a day 15, if you know what I mean.

We feel you

I’m having a tea this morning before we leave for the appointment with our surgeon.

I was reminded yesterday, and have been quite regularly, that amidst all the food, rides, chores, surprises arriving every day on our doorstep, we are significantly blessed with love and support from afar.

Late last night I awoke and could not get comfortable enough to get back to sleep so I went to the couch for a while. In spite of my attempts to do whatever it took not to wake B, I failed. After I changed into a cooler shirt, got back up to get some water, got up again to put food in the katz dishes so they’d stop acting like kangaroos (at 3am), I went back to bed since B was awake anyway. I nestled in to his warmth and he put one warm hand on my head and an arm around me. This was the grounding I needed to settle down. I immediately thought of those of you reading this blog who either live far away or are just not in our immediate support group. Just the fact that you are interested enough to keep up with this, you are like a cloak of reassurance supporting me and us along the trail. Whether it is late at night when I cannot seem to get back to sleep, or while I’m out on a beautiful hike, or when the sad just has to release itself, if I remind myself that you are there, I am held by warmth and compassion. That goes a long way for me.

You are all over the map, and I hope you know that we feel the thoughts, well wishes, prayers, light and positive energy that you are sending to us each day. You contribute to an orb of light formed around our everyday comings and goings, and around our home as we regain our energy in slumber.

I believe that you wouldn’t have it any other way, that we are on your radar, in your prayers and thoughts, on your minds. I know that you care about/love us. I am not quite sure how to express my and our gratitude for that. It is truly a bright blessing.

Waiting: a memory

As time moves closer to the end of chemo, we move closer to more scans. B and I experienced some massive anxiety junk waiting for the ultimate scan that told us that this was not metastatic disease. Our oncologist is very straight with us, which we appreciate. When she first met with us in mid August she asked if we wanted to hear all potential outcomes of the eventual PET scan. We asked her to sock it to us. As she was talking about the metastatic side of things she mentioned that we’d be looking at “quality of life issues rather than longevity”. It was basically in our face that this could be or could have progressed eventually into something we did not really want to have to deal with at this time in our lives.

My Winnie ther Pooh tendency was seriously challenged between that conversation , the PET scan and the results conversation. In fact right after the scan, I left the building and the skies opened up. The walkway had a long roof over it, but I could feel the mist from the down pour. At that time, I was so instantly carried to visualization that I saw in my mind’s eye the rain washing my body inside and out. I was walking with my face to the sky, probably smiling like I do when I’m oblivious to others, and a man came from behind and said something like “perfect timing” with a disgruntled Calvin (& Hobbs) look, as he ran to his car. Our different response to the rain was intriguing and made me smile. I held my arms out to my sides, palms to the sky and the rain as the man pulled out of his parking space and took off.

When I get blasts of the fact that cancer can be a life threatening disease, I feel a small charge, I acknowledge the fear. Life can be life threatening, so this is not a new thought, just an in your face kind of thing, but anxiety is NOT something I think about much in my personal life, or live with often, thankfully. It’s an awful thing that takes over one’s every thought, cell, dream, heartbeat…it is a full body experience in the negative zone.

The PET scan was on a Monday afternoon, late August. B and I both thought we heard the secretary tell us the appointment to review the results was Friday at 9. That’s basically 4 days to wait for results. Have you ever waited for significant results? I remember asking someone who was once waiting for HIV test results if she even considered that she might not be HIV positive. She said that she never considered it once the blood was drawn. She had herself in the grave until the results told her that her death would not be from HIV/AIDS…at least not this time.

Here’s my journal entry 2 days post PET scan:

“UUUUUUUUUUUUUUUUUUGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH!

I received a call at 9:50 this morning from the cancer center telling me that I missed a 9:00 appointment with the oncologist. CRRRAAAPPPPP. I swore that the secretary said Friday. I immediately called her to ask for a reschedule and she said there were no other times this week, and that the doc was off Thursday… but she’d try to get me in Friday AFTERNOON. I called B and the sound coming from his end was eerily similar to the one I made when I got the original call. Sort of like the sound you’d make if you were climbing a mountain and slid back down to the bottom one step from the top. GEEEZ. I feel so frustrated because we just want to know and get on the trail, so close yet so far. Now we must wait for a call with a different appointment.”

“Acknowledging the negative energy from stuff like this and moving on is a delicate art. There is lingering disappointment, a heaviness in my heart. At the same time, it is what it is, just like this cancer. Moving on to other things will bring more fluid energy into my mind, heart and body, but boy, I could hunch over that misery and roast myself in self deprecation and regret like a marshmallow over a campfire. I don’t have room for that right now.”

The new appointment was on Friday at 3:45 (couldn’t they make it any later??). I went to work and planned to meet B at the Center. I was working to get the necessary tasks of my job farmed out, I was waiting for the appointment, people were asking how we were doing. I received a call from a loving colleague and it just sent me over the edge. I started crying, shut my door, called my boss and between sobs told her that I was going home. I took out my pastels and could not even find the right colors, but blasted out the energy as my tears dripped on the paper. Good thing I was using oil pastels.

CIMG9103-150x150

In the midst of the drawing, a call came to my cell phone. It was B. He caught on pretty quick that I was melted down. (wicked smart fella he is) It was just what I needed to calm, and ultimately I finished expressing, and left. When I got home, I sat on the deck in the sun until B came home and we left for the appointment.

Waiting for pathology reports ROTS.

The short story as you probaly know is that the PET was negative. YYYYYYYYYAAAAAAAAHHHHHHHHOOOOOOOOOOOOOOO!

If you want to read the longer story, here it is.

The nurse came out to get us, and was either struck by our incredible charisma and beauty, intimidated by B’s long hair, having a hot flash or SOMETHING. (Well, we probably did look like we had those slinky eyes or something after all the anxiety junk…) She said that someone went over my labs with us Wed (wrong) and that we probably didn’t need this appointment (WRONG). I said something like “We’re meeting with Dr. L to talk about PET results.” and she looked at me like I was speaking MARTIAN or something. This was very unusual in our experience thus far at the “center of excellence”. (Truly it is an amazing place.)

SO, nurse X met with us and assumed out loud that we were post surgery. (WRONG) We corrected that, and they she reviewed meds, took my blood pressure (150/70…WOW, for someone who is usually dead under the cuff …102/62 is a norm for me…) and other vitals, and just randomly asked questions. I got her updated about the port installation and then she asked if I knew how that was going to work. Bob and I kept glancing at each other like OK, this is either a result of her putting her panties on backwards or she’s nervous about the information in the chart. I full heartedly believed it was her bad hair day. I think she felt good that she could educate us about the use of the port. She left and we shook our heads and made sounds like Buggs Bunny did after getting hit in the noggin.

Dr. L was a welcome smile as she came through the door. “I’m glad you insisted on this appointment. I knew my patient cancelled and had no idea you were here.” (another jolt on the weirdness meter) She said a few other things and I don’t know about B, but I went into Charlie Brown teacher mode “Wa waaaaa, wa wa wa waaaaaaaaa until I heard…PET scan was NEGATIVE.” She kept talking but B and I went into slow motion looking at each other, high fiving, and I immediately felt my blood pressure drop back to the dead zone. You know I use that dead term jokingly, right? (When I was 9 months pregnant and had a 110/60 blood pressure B shook his head and asked if I was dead.) Anyway, meeting again with Dr. L confirmed our belief that she will be a cool and intelligent partner on the trail.

It’s so interesting how eerily easy it is to feel grateful about the news that this cancer is local and systemic instead of metastatic. As soon as we got in the car we called the kids and we all celebrated in gratitude and relief.

So here we are. Mid cycle 3, one more infusion next week, and we just received dates and times for a PET scan ordered by our oncologist and an MRI ordered by our surgeon. I wonder what it will be like waiting. They made the appointment to review PET results the DAY AFTER the scan. I hope we remember to go.

10/12/09, Pick’n’um up and put’n ‘m down

P, keeps pressing me to articulate the partners experience of breast cancer and chemotherapy. The other day I was having a wonderful conversation with a co-worker, a 20 year survivor of lymphoma. And, she has really taken a concern in my well-being, very sweet. The point however, was I mentioned that an essay was tumbling about in my thoughts about exercises that produce mental toughness, emotional resilience and spiritual alertness. In my conversation with M I wondered about partners, unlike me, who after dinner flick on the TV and zone out till bedtime, perhaps they get some golf in on the weekend. How do they handle the intensity of this experience? M pointed out that she had attended a support group during her treatment and that she saw a lot of families breaking up – that indeed the partners couldn’t handle the added stress.

There are certainly people who train longer and harder than I do, and, I salute them, my point in this is not to boast about that, but, rather to examine the unintended consequences, the side effects that exercise offers (or, perhaps, we have it backward and the muscular power is the side effect, rather the mental toughness is the sought after). P, was pressing me a bit last evening as she struggled to deal with her own lack of energy, and general malaise. She asked me how I kept going. I found myself calling upon the dead lift, and a statement that the yoga teacher makes regularly in class – to explain. Coach Glassman of CrossFit, prefers to call the dead lift, the “life lift” since it is such a fundamental movement, picking up a toddler, our car keys, or a bag of groceries. I’m a profoundly lazy man, and so, I look for efficiency in everything I do. The dead lift gives me more bang for my buck than many other movements. Really, if there is a weakness here it is that usually the lift is done with really heavy weights and hence gets done slowly. Its focus becomes strength, rather than power, but one can use lighter weights and jump, or pair it with something explosive, like dumbbell snatch and overcome that easily. To the point, P, said how do you keep going? And I slipped into a metaphor – I just squat down and grab the bar with my right hand, and then my left hand, and then keeping my back straight I stand up – simple, mostly.

Some days, I can do that a lot, others, not so much. But, using the words of the yoga teacher, “Just, observe what you can do, don’t judge it. Make a note of it and then get back to breathing, and working.” I had the concept before, just not the words, and so it is nice to have the words. Some days the emotions make it difficult to do anything let alone to work out, and on those days, I give myself double credit for attendance, but, I make certain that I’m in attendance. I don’t set high goals for those days, but I do try to make certain work gets done and I don’t beat myself up for what doesn’t get done. Mostly for me the emotion I’m experiencing is anxiety: too much energy to burn and no place to point it. I recall this summer waiting for test results and being so anxious, my bullshit meter was pegged. I asked my boss to please shelter me a bit, because, I knew that if some whiney, self-absorbed, dufus got past the safety barriers, I was going to rip their head off and shit down their neck – fairly anti-social — without context. My boss has been a dear about that. The gym is a place to pit that anxiety and aggression against inanimate and indifferent weights, and to re-create myself. The anxiety is probably the same as fight or flight, and remembering back to my friend M and her observation about couples breaking up I suspect the partner ended up with overwhelming flight response – nothing in their lives prepared them for it, nor did they have a way to convert it to fight and then to burn it up. I’m fortunate to have experiences with martial arts and in the gym that give my points of reference and words for what might otherwise just be an acid bath of emotion. Pick’n’um up and put’n ‘m down that’s how I get through.

10/8, Time keeps on slipping, slipping into the future

E and I went camping/canoeing last weekend. It was a grand adventure. With P’s situation I’m afraid I/we lost track of E’s birthday. This losing track is something that I’m struggling with in this situation. Mostly it is anomalous sense of time passing, more than forgetting. I didn’t forget his birthday, I just couldn’t keep it in focus as the time elapsed – I’m not sure I’m explaining the experience. Anyway, I realized around Tuesday, that I wanted time in the woods, and I wanted something special for E. So, I noodled around on-line a bit and talked with a buddy at work and decided to go to Flagstaff Lake. In truth it is 2 lakes, nested crescents divided by a peninsula/island where there is a primitive campsite – about 6 miles from the Stratton boat ramp. Perfect I thought.

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So, we threw our gear together Thursday evening for a Friday morning departure – no school. The plan was to overnight and return late the next day. We had perfect conditions for our paddle out. The Bigelow Mountains filled the horizon to the south; the tops shrouded in clouds, and were dusted in early snow, the sides in full fall color. We arrived at the campsite about noon, set up camp, and then took a long slow walk. We saw partridge, ducks, and geese, lots of moose and deer sign. Our planning had been so punctuated that at the C store I stopped to fill the gas tank, and sent E in to pick out food for dinner – 2 cans of Chile, and a package of hot-dogs, as it turns out. Whatever. Time to cook it and I was up for cooking it all, but, E held me back he insisted he couldn’t eat that much. OK. So, one can and half the hot-dogs – and as we will find out this was a prescient thing. Indeed as the weekend unfolded I found myself trusting E’s misgivings and observations increasingly. He doesn’t have the experience to really articulate his concerns, but he has good gut instincts. Next day, I thought we would paddle out by going around the island on the other side, see some new stuff. We had a slow start, packed and underway, by 10. Cloudy and breezy with brief showers. As we neared the foot of the island we found that with the lake level being down 3 feet or so there were no channels back through to the main lake, just, mud and no real sense of how long a portage it would really be. We were left with the option of paddling back the way we came and the weather was worsening. By the time we got back to the head of the island the wind was howling and the waves were picking up. I in a fit of parental democracy in action I decided that we were done. Back to the campsite for another night, fortunately we had food for dinner. We set up a tarp to shelter the tent from wind and rain and went to bed early. At dark the wind died down, but the rain started in earnest, and poured for 3 or 4 hours. We awoke to silence, no wind, or rain – but, fog. Fog so thick we couldn’t see the far shore. Whatever, as my Grandfather used to say “If it aint one thing tis’a-nuther”. We made breakfast, and packed and by the time we were ready to go, the fog cleared enough that we could see the other shore. So, we paddled across and followed it out to the ramp, and we were home by noon. Refreshing, and exhausting, a good adventure all around, I thought my batteries would be recharged. But, I find myself still struggling with how slow P’s treatment seems to be going and how incredibly fast everything else is going,

A’s soccer season is almost over, responsibilities with the Boy Scouts, and E’s Jujitsu, all seem to explode on me. Work is the same way, minutes drag, and hours pass in kaleidoscope haze of speed. It is humbling to see the generosity of our friends. And I’m sure they would do more, or rather more precisely, if we knew what we needed and how to ask for it. But, that is the rub. I’m not sure what I need. Do I need more time, or conversely, fewer responsibilities? I’ve tried that, sort of, with the Boy Scouts, but, alas, that time is therapeutic, giving it up costs me something. But, I can’t pretend that I’m doing my best with what I’ve kept, again, because I can’t keep the passing of time consistent. I don’t think I’m dropping too many balls, or looking too awkward when I do, but, it is still an unnerving temporal disorder.

Going to Chemo

Today was the first time I went with my mom to chemo. I wasn’t sure what to expect but nothing surprised me. All we did was sit in a room and wait for the process to be completed. Even though there wasn’t much to do, I pictured in my mind that the red liquid being put into my mom’s body, changing into the strong brown rope lassoing the untamed cells. This thought came to me as I remembered the picture my mom drew.

We were stationed in window seat in the chemo room. The panorama of the rolling hills, and the sunny sky was a reminder that my life would sometimes be one of those hills with one steep up hill side, and one sloping side. But which side was which, sloping, or up hill. This depended on our thoughts, if we just thought that this situation was stupid and then, poof, it would be gone is definitely the wrong idea. But we could also think that, yes, it is stupid but being prepared and aware is the most important thing to do. I choose the down hill : being aware and prepared.

The chemo suite was a huge part of the building. I think there were about 25 stations where people were being treated. I looked around and saw young people, and elderly people. I thought, why is there so many people here? Why should anyone have cancer at any age? Why should there even be a word, cancer? The last person I ever would have thought to get cancer, was my mom. And somehow she feels in the best shape physically than any other time in her life. I think that it isn’t just physical health. Mental health is, I believe more important that physical health. I think that since my mom is being very confident in herself, that her mental health is the biggest of the two.

Whenever my mom’s friends and even our family, ask me what I think of this situation, I am at a loss for words. Somehow I don’t think I have any thoughts but as I go to empty them with drawing and writing, I realize that I haven’t done much of it. Should I be more focused on thinking about this, instead of trying to make it seem as though our lives are normal? What I try to do is to not let it eat me up by thinking about it too much. I don’t let it thrive on my thoughts and basically suffocate me. If I do have thoughts I sometimes communicate with my friends. I think I communicate well with my friends because I guess we understand each other well, and also that we may have something in common. By telling my friends, I have realized that some of their loved ones also have had or have cancer. I think by telling them, I feel more confident to share my thoughts with others, not just friends.

This does suck, but that’s not going to change anything by complaining. The down hill is much easier to walk on than the up hill. Also telling myself that it sucks over and over again is a part of mental suffering. Having mental health is more important than physical health so that I stay healthier than ever before. But having physical health is important too, because walking up a hill is sometimes a lot of work.

9/23, Cowgirls, magic, and biblical ironies

Day 1, cycle 2, I think if we were to ask P if she were nervous, or something like it, she would deny it. But, after these few years, I can detect a layer of subtle anxiety. I think it is kind of like when sparring and somebody demonstrates that they can land a solid blow on you – at will. There is a wariness that one develops from that experience. It doesn’t mean you won’t spar with that partner, but, you have a healthy fear. I think that is where we are at. I’m not sure how to create a CowGirl analogy here other than to say that you have to get back on the horse that bucked you off.

The whole hair thing is becoming an interesting issue as well. It is complex. I think there are issues of gender identity — many women are their hair in a way like many men are their baldness. Perhaps it is a way to obsess over something that doesn’t really matter and so wrangle with the neurosis inherent in poisoning yourself to heal – a distraction. I think keeping the hair around as long as possible is also a denial – “I’m not really fighting a disease and this isn’t really happening to me.” Denial and rationalizations are the two sides of the same coin – I think.

From “The Big Chill”:

Michael: “I don’t know anyone who could get through the day without two or three juicy rationalizations. They’re more important than sex.”

Sam Weber: “Ah, come on. Nothing’s more important than sex.”

Michael: “Oh yeah? Ever gone a week without a rationalization?”

P wanted as she does, to turn the head shaving into this big ritual – a circle of family, drumming, probably chanting. Alas, neither A nor I were really able to accommodate that, E was still in bed, but, he might have been more sensitive. A dear friend, K, is taking P and E to Chemo today and another friend, S, is meeting them there as well. Full house, therefore, I’m at work. I suggested to P that she shave when she got home, before the drugs kick her butt – perhaps K and E can help here with that. I wonder what I will find when I get home?

I have little patience for the Bible, but two stories I like, and they are related, are that of Samson and of the Parable of the Talents – wisdom is where you find it and if you are smart enough to pick it up.

Samson and Delilah Judges xvi, 4-20.

And it came to pass afterward, that he loved a woman in the valley of Sorek, whose name was Delilah. And the lords of the Philistines came up unto her, and said unto her, Entice him, and see wherein his great strength lieth, and by what means we may prevail against him, that we may bind him to afflict him; and we will give thee every one of us eleven hundred pieces of silver. And Delilah said to Samson, Tell me, I pray thee, wherein thy great strength lieth, and wherewith thou mightest be bound to afflict thee. And Samson said unto her, If they bind me with seven green withs that were never dried, then shall I be weak, and be as another man. Then the lords of the Philistines brought up to her seven green withs which had not been dried, and she bound him with them. Now there were men lying in wait, abiding with her in the chamber. And she said unto him, The Philistines be upon thee, Samson. And he brake the withs, as a thread of tow is broken when it toucheth the fire. So his strength was not known. And Delilah said unto Samson, Behold, thou hast mocked me, and told me lies: now tell me,… And it came to pass, when she pressed him daily with her words, and urged him, so that his soul was vexed unto death; that he told her all his heart, and said unto her, There hath not come a razor upon mine head; for I have been a Nazarite unto God from my mother’s womb if I be shaven, then my strength will go from me, and I shall become weak, and be like any other man. And when Delilah saw that he had told her all his heart, she sent and called for the lords of the Philistines, saying, Come up this once, for he hath showed me all his heart. Then the lords of the Philistines came up unto her, and brought money in their hand. And she made him sleep upon her knees; and she called for a man, and she caused him to shave off the seven locks of his head; and she began to afflict him, and his strength went from him. And she said, The Philistines be upon thee, Samson. And he awoke out of his sleep, and said, I will go out as at other times before, and shake myself. And he wist not that the Lord was departed from him.

Those of you who know me, know well, that strength is an attribute I celebrate and admire. But strength for most of us is not magical or a gift of god, but, something we work for everyday. Strength comes with a high price, exhaustion, pain, workouts with intensity that leaves you near black out, or, vomiting. Samson it seems not only had great personal strength, but, he was a great martial artist, and a guerrilla leader. Talents that he took for granted and perhaps even resented. His Nazerite vow was imposed upon him by his parents as an infant. In a way this story of Samson and Delilah reminds of the goofy movie cliché where the bad guy has the ultimate weapon of doom and it has weirdly a self-destruct mechanism. We see this with our Sports hero’s too, they have pre-game rituals and superstitions. Magic as it were. Magic, perhaps, to explain extraordinary talent, and magic to explain extraordinary weakness.

The Parable of the Talents Matt 25:14-30

The parable tells of a master who was leaving his home to travel, and before going gave his three servants different amounts of money. On returning from his travels, the master asked his servants for an account of the money given to them. The first servant reported that he was given five talents, and he had made five talents more. The master praised the servant as being good and faithful, gave him more responsibility because of his faithfulness, and invited the servant to be joyful together with him.

The second servant said that he had received two talents, and he had made two talents more. The master praised this servant in the same way as being good and faithful, giving him more responsibility and inviting the servant to be joyful together with him.

The last servant who had received one talent reported that knowing his master was a hard man, he buried his talent in the ground for safekeeping, and therefore returned the original amount to his master. The master called him a wicked and lazy servant, saying that he should have placed the money in the bank to generate interest. The master commanded that the one talent be taken away from that servant, and given to the servant with ten talents, because everyone that has much will be given more, and whoever that has a little, even the little that he has will be taken away. And the master ordered the servant to be thrown outside.

It is ironic perhaps that Samson’s fall is seen rather like the 3^rd servant. I say ironic because the Old Testament “G”od , a wrathful and jealous one, seemed to love him in spite of his weaknesses, arrogances, and appetites. And the New Testement “G”od one allegedly of love and forgiveness would seem to cast a person like Samson into darkness and suffering. Certainly that is the human justice we love to see in our celebrities and reality TV. The rest of us who have to work hard for strength or insight like to associate ourselves with the hard working servants and imagine fairness and justice in the universe. Although this story of Samson’s fall fills our minds, we should not forget his success as a leader, a martial artist and a strong man – he led his people for 20 years after all. Perhaps, he like the first servant doubled his masters’ investment – in spite, and perhaps because of, his human frailties. Cancer is neither fair nor just and everything about it is ironic –our own bodies run amok against ourselves.

Perhaps it is extreme situations and how we play to our strengths, our unique geniuses, our talents as it were, that we will be remembered for?

So the question becomes how we manage our magic so that it gives us confidence, but, does not replace the thing it is meant to invoke?

If we shave P’s head, what remains?

In truth, I think we are left with a Winnie-the-Pooh, just bald, and for it perhaps all the more Winnie-the-Pooh. The hair, no more than the disease, describes P – and yet, both are her as well. I think the beauty of Samson’s story is that there are no lessons to learn, just a life to observe. A life to reflect mine against an imperfect mirror as it were.

9/20 Green Tomatoes and Hair Energy

Of course I cannot just keep this blog about cancer. Life goes on and anyone who knows me knows that I’ve been steeped in the kitchen, and vow to keep my grandmothers’ italian kitchens alive. This morning is chilly. I love this weather. Those of you in the northeast know the delay to our growing season which was caused by rain and more rain in June and July. So now we have beautiful tomatoes, most of them green. While the katz and I were rolling around in the morning light, I decided to make some fried green tomatoes for breakfast. We did the usual flour, egg and and seasoned breadcrumb covering and fried them in olive oil. They were a bed for the over easy eggs topped with grated Parmesan, fresh RED cherry and sun-gold tomatoes and some fresh basil. It was really tasty. I saw Julie and Julia last night. Loved it.

The hair thing is interesting. As many of you know I’ve chopped all my hair off. This has been a great thing for me. Not only is it fun to have short hair, I loved it when my friend S told me that with my baseball cap on I look young enough to be a boy. She said it with such endearment in her voice, I wore it like a proud pony. I feel like it’s given me strength to surrender something that has, in part, defined me on the physical plain. You know that I don’t usually fuss with my hair…like not at all. I am happy to say that I have come to love its color and texture (that took some time). The messier the better.

My hair is still holding on. Even before all of this, I had thought with great compassion about what it must be like deal with hair loss. Whether it be related to aging, allopecia or other medical reasons. I never imagined that I’d have to deal with it…my family is hairy. Honestly, it is the thing I look forward to the least. Give me nausea. Hair loss? I don’t think so. I suspect that once it happens, I’ll be able to get on to bigger and better things and that will be that. UUUUGGGGGGGGGGHHHHHHHHHH. Admitting this to myself and YOU is important for me.

While at the Jr. High picking up E the other day, I saw children frolicking about on the beautiful green grass behind the school. A group of girls was running and laughing and one of them had no hair. E said something about her having cancer and how he admired her for the courage to just go on with life as a baldy (my term). I watched her for a while. She taught me a lot about what is important just in the 3 minutes I sat there.

When I was probably 9, I did the 70’s thing and got my long hair cut into a groovy shag. Mr. Marconi had the male pattern baldness thing going on big time, and we used to talk at the neighborhood lake about his hair and my hair and he told me if I ever cut it off that he’d love to glue it on his crown. So I brought the bag of locks to him after my back to school hair cut. He cried. Mind you, this was not a sacrifice but an offering on my part. I HAD to have a shag. No sweat off my brow.

My colleague, a cancer survivor, sent me this 1 minute clip before I left work. I cry every time I see it.

A’s sacrifice still chokes me up and probably will indefinitely. On Friday at the soccer game, her good friend who clearly loves me, ran up to me, her once long blonde hair now shoulder length. When she hugged me she tapped my shoulder and whispered in my ear that she did it for me. Why does this bring tears to my eyes every time?

hair-energy-150x150 I drew Hair Energy before chemo started. I was not going to put it here because it’s kinda creepy with no face and all, but it’s part of what I’ve been visualizing. I have learned that hair loss is common with the chemo drugs I am given because they go after fast growing cells, like cancer, cells in my intestines, blood cells and hair cells, to name a few. This is why getting a shot to inspire my bone marrow to produce white cells 24 hours after the infusion is important. This is why there is such gastric distress. This is why I have thought a lot about losing my hair. I’ve got the clippers ready and some days I just want to get it over with instead of waiting.