Cycle 4, day almost 2

CIMG9232-150x150So here’s what I did all day yesterday:  I went to the infusion, rides by angels both ways.  S#1 arrived at my house right on time, all cheery and lovely.  She drove me in and stayed with me till I was all snug in my chemo chair with the best view of the beautiful gardens and fields outside the Center.  I drew my final infusion of the “red lady”, it became the roots digging in to find the rest of the disorganized cells.    I found myself visualizing this red agent of healing reaching far, searching, thinking that I really wanted more of it to go down into the disorganized cells, of course, less into the cells I want and need.  I would not say I dreaded this treatment, I just tried to stay on the trail. When S#2 arrived (the return taxi and companion) she made an entry into the blog for me…which you’ll see below!  A guest speaker.

I think B took on the anticipatory anxiety for me (what a guy).  I just took one moment at a time, enjoying the company of S and S the angels of the day who brought me to and fro.  There have also been many others providing food, calls, chores…and of course A and E rubbing my stubbly head and snuggling with me.

When I got home B was there for the hand off (he left work early…more Chemo Covad as he puts it), and I went to bed.CIMG9231-150x150 When I woke I had a headache and was completely warmed by the feline blob you can see next to me.  I was sleeping on my side, and they were in my lap, per se, and purring up a storm.  Chang Tzu (the siamese ‘head’ closest to me) was under my chin most of the time.  They know.

I had to remember that I’m also on a PET scan diet (only protein and fats) as the scan was the next day, today.  SO water was it for drinking, and I made some bland tofu and broth and a spinach salad with tomatoes and almonds to get me through the day.  I certainly didn’t feel like having many fats…bleeechh.

I was in bed watching an ocean documentary for probably an hour after dinner, and started dozing off right as the blue whale calf got attacked by the orchas…the most exciting part, of course… and I slept and slept.  I took some advil and that was it for the night.  This morning I can not eat anything, only water, as the PET scan is at 9 and the CT scan at 10 (for which I get to drink some lovely overly sweet drinks masquerading as lemonaide).  After that the shot of neulasta to enhance white blood cell growth, and I can be a normal consumer of whatever my heart desires!  But acupuncture is at 2, and he doesn’t really want a full belly…so I’ll have to restrain myself!

Geez, for day 2, I know it’s only 5:30am, but I am feeling guardedly well.  Mild headache.  Not bad.  Not much to ruminate about today, just riding the trail of appointments.  Thankfully I’m ending with acupuncture.  AHHHHHH.

last day of the infusion!!!

Written by our sweet friend S:

well this is my second attempt at using the laptop! somehow i erased my first draft but i’ll give it another try.  it is a most lovely day as i sit with sweet P for her last infusion.  it is the universe’s way of saying that she is in synch with P and the only way she can show her light, blessing and support.  good omens are angels, too 🙂  i’m happy that i will be P’s chauffer home today ~ yippie! i told P i would fly her home on silver wings. i wish i really could. P is drawing up a storm as i type.  i can’t wait to see what she creates.  time is moving on but sometimes it doesn’t go as quickly as we would wish.  pretty soon we will see the evidence of the “red lady’s” mission of peace into P’s strong being and body.  with all of the love, light and support sourrounding P and B and A and E-L, how could it not be right? signing off ~ time to fly sweet P home on those silver wings of mine.

Cycle 3, Day 14

Welp, here we are at the end of the feel good part of cycle 3.  This past week I have truly felt well and as normal as a bald woman can feel.  I went to work for a couple hours both yesterday and today, and it was truly great to see my colleagues who have been pulling for us all along the trail.  I even got a few work related things done!  It felt good to know my brain could still function in that capacity.

A loving friend came today to help me put the garden to bed, and another has been helping us stack the wood that we just have not gotten to.  The angels continue to fly around us.  I am in the midst of my intentional rest time right now.  Even if I cannot nap, if I am reclining, the katz make sure that I do not move for a good long time by either sitting on my legs, or wedging themselves on either side of me.

I just want to get through this last cycle of this phase so we can get on with things.  It feels like it’s been a long haul, and I’m ready to take the next steps on the trail.  We will keep you posted.

Walk4Hope

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You guys, check this pic out.  We had a gorgeous day for the walk!  Here is the team Patty’s People that you ‘ve been hearing about.  So many of us were like sausages with our tie dyed tees OUTSIDE our jackets and sweatshirts!  It was fairly chilly at the start but the love and walking warmed us up quickly!  The walk took in over $91,000 as of this morning, with $$ still trickling in.  Thanks so much for your support and to all of you who donated and walked beside my family and I.  It was wonderful to see colleagues and friends.

I’m feeling really good today and will be going to work for a couple hours on Monday and Tuesday this week, and on the days I feel up to it thereafter.   Fortunately I can do some of my administrative tasks from home between naps.  With infusion #4 coming up on Wed, I’m certain I won’t be back in the office for several days, but I have so much support at work and can take my time getting back in the swing.  I suspect that surgery will not happen until I’m well over the chemo, so I may have several days in a row that I’m feeling good once the initial fog lifts after day 7.  I’m hopeful that my response this cycle follows the pattern of the last 3 where I feel good after a week.

I’ll keep you posted on the next steps.  All the scans will take place the two days AFTER chemo, and the surgery meeting happens on the 26th.  We moved all the dates up, which I’m happy about.

Here is a pic of my sweet family.

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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.

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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.

10/13 Simplicity on a better day

A rainy day, a kat on my lap, a big fire in the fireplace.  A good cry this morning.  A visit from my loving twin brother who arrived with a new, sure to be famous (at least in our house) chili for dinner.  Acupuncture relief.  A wonderful nap with my furry companions.  Laughter.  Several supportive conversations, one from a sister survivor.

Talking with others who have gone through chemo certainly puts things into perspective for me, and that’s what I really needed this week.  I’m not the only one who has had to deal with this, brilliant, I know.  It definitely will pass.  Brain fog happens, low energy, not knowing what one wants or does not want, not being able to tune into one’s body messages.  There’s an end to this.  Hope.  Thank you, L,  for telling me more of your story that I may understand my own better, and see the forest through the trees.

SO, writing this blog is not exactly like journaling, but there is an element of exposure when I think of others, unknown but known, reading our story.  All I ask is that if you get the sense that I’m slipping into brain mush and writing Dear Diary material, please exit and “Don’t pay  attention to the (wo)man behind the curtain!”

Today is a better day.

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.

10/11 Farther away, as you get closer

The farther away we are from the last infusion, the better I feel, the closer we are to the next one, CRAP.  The last one, YIPPEE.  I awoke the other day and said to B  “hey, more than half way there” and quickly realized how focused I am on this phase of treatment.  Keeping our eye on the prize and focusing on what I and we need to do to get through today is tricky some times. 

This cycle is different from the last, which was different from the previous.  I’m not sure what my body is feeling much of the time.  I know when I need to lay down.  I don’t know if I’m nauseous or hungry or neither or both.  I know that I cannot put two thoughts together sometimes, and thankfully, B and the katz understand this and do not expect anything of the sort.  I know A understands.  I felt it in her warm grasp during our entire walk today.  I know that E understands because he rode his bike past the window several times doing goofy stunts just for me and I was gratefully trapped in the moment of joy with him.

For someone who takes joy in putzing, I have to admit that I cannot putz to my hearts content now.  I putz in spurtz, and although it is sort of satisfying, it sure ain’t the Full Monte.  Being aware of what my body needs, and being ok with it is my primary job right now.  It is what it is.

Today it feels like chemo is wearing down some edges that will take time to sharpen.  In time.

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.