One More Cup of Coffee (a favorite Dylan tune heard today)

I have, after 12 coffee dates since last writing, established my favorite morning beverage to be camomile tea. Greg told me today that camomile tea has a side effect of drowsiness -- which may explain my erratic sleeping habits these days. My body wants to sleep during daylight hours and perks right up when I go to bed at night.

Coffee-date requests continue to dribble in, with eight more on the calendar in the upcoming weeks. It's been truly gratifying catching up with everyone. They definitely know my name at the Harmony Cafe. Thanks for giving me a better reason to get out of the house than JUST going to the pharmacy.

They know my name at my new pharmacy, too. I've been trying all manner of things to keep nerve pain at bay, stay awake during the day, sleep at night and get more of my life back.

Today we bought a good map of the United States. My goal is to be good enough by summer to put a few thousand miles on Greg's new truck. We're roughly thinking Grand Canyon, up the west coast, home through Wyoming. Let's hope my CT scan next Monday doesn't interfere with MY PLANS to make up for 2011.

Off to bed again. Looking forward to tomorrow's coffee date. I think I'll try some COFFEE in the morning and save the tea for evening.

NOTE: I've learned that comments left on this site often do not get published. If you've left a comment here and feel you've been ignored, this is very likely the case. Please E-mail me at booklady@tds.net next time.

No Time to Wait

There's no time to wait.

I've been fortunate. For the past nine months I've been forced to slow down, explore my full range of emotions (!!), and boil myself down to the "essence of Mary Murray."

I couldn't sleep last night. I got up and read my email. There, alone, in the middle of yet another dark night, I learned that almost a month ago an acquaintance of mine died of recurrent breast cancer. When I last saw and spoke to her in October, she didn't know the cancer was back. She died on January 7.

Today I feel more strongly than ever that there's no time to wait. We must become who we really want to be -- now.

So today I begin an experiment I've been thinking about for several months.

While I was sick I gave a lot of thought to what I wanted to do when I got well. Mostly I daydreamed about a solo road trip. It would serve as my turning point -- returning to life after hibernation. But the longer I entertained the road-trip idea and the more I explored my motives for such a trip, the more I realized that plan didn't quite hit the mark. It didn't make the best use of my time.

Of course I knew the part I'd like most about a road trip would be sitting in coffee shops, hearing about the lives of others, then sharing those stories with the people I'd eventually come back home to. (Lord knows I've shared MY life thoroughly enough this year, blow by blow. Now I want to hear about YOURS.)

It dawned on me that I didn't need to spend the time, money, or energy required of a road trip, especially when it wasn't really a change of scenery I was looking for. I could, with a little bold creative effort, skip right to the coffee shop meetings and the sharing with "my people" right here at home. After all, I'd spent months hiding out. I had a lot of catching up to do before I'd be ready to take off on a journey alone. Clearly, it's people and relationships I care about when I'm not in my pajamas licking my wounds.

So here's my bold creative effort:

I plan to be at Harmony Cafe every morning from 9 to 10 a.m., Monday through Friday, until further notice. I am there to fulfill a selfish pleasure -- that is, hearing about your life, one on one, until I've had my fill (ever?) and have caught up with all the friends and acquaintances I've been waiting to catch up with the past nine months.

I have dedicated a calendar to "Harmony Cafe Meetings." As of this moment, all 9 to 10 a.m. slots, Monday through Friday, are OPEN.

Please e-mail me to book your time. Coffee or Tea is on me.

1) If the time and/or location is impossible for you, I am likely to bend a little. (The rigid schedule above is for one reason only: I prefer to get in a groove as to where I'm supposed to be when.)

2) It doesn't matter how well I know you or how recently we've talked. It doesn't matter if we've EVER talked. It doesn't matter why you think you might enjoy spending an hour with me -- just please don't try to sell me anything. I'm gutsy enough to pack up and leave -- rapidly -- if that happens.

3) It doesn't matter how many responses/appointments result from this open invitation. No one (but me) needs to know how this works out! If I'm completely rejected and no one wants to fill the time slots at Harmony Cafe (again, 9-10 a.m. Monday through Friday), I will thoroughly enjoy my own company in one of my favorite spots. (Those of you who know me best know that this is true. As long as there are laptops and books and pens and notebooks at my side I am a happy camper.) Besides, I need motivation to get out of the house; I need distraction from the lingering effects of cancer and "shit on a shingle" as one blog reader so aptly put my latest affliction.

I'm here at booklady@tds.net with my calendar, hoping to see you soon.

Harmony Café - Fox Valley
233 E. College Avenue
Appleton, Wisconsin 54911
(920) 734-2233

"The hardest part about breaking out in shingles just as you think you're healing from severe radiation burns is that you cannot predict your level of pain from hour to hour." -Mary Murray, Jan-2012

"The hardest part about breaking out in shingles just as you think you're healing from severe radiation burns is that you cannot predict your level of pain from hour to hour." -Mary Murray, Jan-2012

My last blog entry, January 5, seems like months ago, not 17 days ago.

In retrospect, the first indication of shingles appeared January 8 -- a rash in the area of greatest vulnerability from radiation damage, my armpit.

The following day Greg and I saw my radiation-oncology doc and discussed issues outlined in my January 5 blog. (While I mentioned that day that I had a new rash in the armpit, we all glossed over it as I thought it may have come about as a result of trying a new -- more comfortable? NOT! -- bra the day before. I was told radiation pain might go on for several months and was awarded more, stronger pain meds. At last, Rush Limbaugh and I have found common ground.

The rash grew angrier and covered more area as days went on, traveling to the middle of my back. So now I had pain in front AND back. Getting comfortable in a chair or bed? -- out of the question.

It was a rough week, at the end of which Greg STRONGLY URGED me to see my dermatologist.

Shingles.

Shit.

Shingles!

Already armed with various levels of painkillers, dermatologist added a med to fight the shingles virus and Neurontin (which I stopped after just one tiny pill. Talk about a way to get whacky!).

Memories of the week following the shingles diagnosis are sketchy. Lots of notes around the house about when I took my last pain pills, which kind, how much, etc. Sometimes there was drug-induced bliss and an exaggerated sense of humor. Often there was too much fog to play "Words with Friends" or make a coherent grocery list. Most of the tme, I stayed safely out of harm's way ASLEEP.

I have now had my followup with the dermatologist. He says I can come out of quarantine in another week. Rash has gone through dramatic changes, appearance-wise. Pain can be anticipated to continue for some months.

While I'm ever so grateful the pain doesn't only come, it also goes, the coming and going is unpredictable -- keeping me from planning my day much less making any longer-term plans. What comes comes, what happens happens.

One minute I'm ready to tackle a project, the next minute I'm in bed waiting for pain pills to kick in. The need to drive a motor vehicle poses a challenge and considerable planning, to the best of my ability.

Thanks to all who haven't forgotten about me during unusual absences from Facebook, e-mail, The Y, and coffee shop meetings. May life become more manageable again one day and may the lessons I'm being taught serve to make me a better person in some small way going forward.

Kudos to Greg Koerber for helping me stay afloat as we tread water waiting for the tsunami to subside.

In summary of the past six weeks

January 5, 2012


Dear (insert specific names of members of my Radiation Team):

On Monday I’ll be just down the hall from you at a follow-up appointment with Oncology. (They do regular, routine follow-up to discuss long-term and lingering effects of chemotherapy.) While I’m there, I’d like you to stop by to address the long-term and lingering effects of radiation.

On the day of my last radiation I had already been in considerable pain for two weeks. I ran into the attending nurse in the lobby that day on my way out and asked when my follow-up would be. She said “We’ll call you in a few months.” I was surprised by that. I didn’t feel ready for such a dismissal, but I decided to hope the worst was over and I could look forward to smooth sailing.

That day I was also given a Certificate of Completion for six weeks of radiation, 30 treatments. Little did I know the end of treatment was but the beginning of the most difficult month of my life. (The Certificate, personally signed by all staff members, was subsequently crumbled into a ball and cast into the fireplace.)

Considering the aftermath of my radiation, I feel I was ill-prepared for the weeks that followed what your department deemed “completion.”

I was unprepared for the open sores continuing to worsen and the pain continuing to escalate over the ensuing weeks. My husband and I were not prepared to administer the level of care required for the angry, seeping sores that eventually took over the left side of my chest – an area approximately 8 inches long and 3 inches wide – following my scar lines. We were given my nurse’s handwritten yellow sticky note on burn care; we soon began to think my condition warranted considerably more information. (See enclosed photos. My husband suggested I post these on my blog to explain, graphically, my six-week absence from life as I knew it. I didn’t post the photos. I feared people would find them too distasteful.)

Now, a month out from completion of radiation, I continue to experience red-hot skin pain over the entire scar area along with intermittent shooting pain I’ve come to call “nerve pain” for lack of better understanding. There remains, as well, a small area requiring wound care. Last week I was finally able to wear clothes again (and thereby leave the house for anything other than radiation for the first time in six weeks). I still don’t leave the house, though, without pain pills, wound-care products, and anxiety meds.

I try to do without pain pills as much as possible, now using about 14 tablets a week of the prescription last written for me. I have no idea how long the pain is likely to persist; it would be nice to have some idea of what’s expected from here on out. I would appreciate a refill – and a ballpark guess as to how long I’ll be depending on painkillers.

Also, is there any alternative therapy? Massage, perhaps? Help me out here. I refuse to Google remedies for a condition you surely must see on a regular basis. My husband and I have grown a wee bit frustrated with trying to cope and figure things out on our own, though we are grateful for the times our friendly pharmacist, Kurt, offered helpful suggestions.

I hope to see you on Monday, then, to shed some light on the specific concerns above. I will be in the chemo room for at least an hour receiving I.V. herceptin following a discussion of remaining chemo side effects and a MUGA scan to detect possible heart damage due to chemo. The oncology department seems intent on keeping an eye on how I’m doing. It’s reassuring; I feel good about their care.

Sincerely,





PS—It is true that each time I phoned your staff for help during the worst of times, I was offered the option of “being seen.” Twice I turned down the offer. Not only was I in too much distress to even imagine wearing clothes, but since I didn’t feel well-served by phone, I could see little point in putting myself through the exercise of being seen in person.

What should have been

Dear Anne,

Thank you for the lovely centerpiece delivered to our house today. Your card read "Let the Healing Begin!" I cried. Not because I was touched that you remembered the exact day my radiation was to end, but because there are still two treatments waiting for me.

The machine broke down Tuesday and won't be fixed at least until tomorrow, Thursday. At best, my radiation will end two days from now. I doubt you can fathom how disappointed I was to have two days off mid-week when it meant I wouldn't END ON SCHEDULE -- but if you really want to know how I felt about it, just ask Greg or Elaine or anyone else who had the misfortune of speaking to me yesterday. I was not a very patient patient.

...And so, if radiation ends Friday, December 9, I should begin healing Friday December 23. Let's have another refill on the pain pills then, shall we?

(The other day I asked the technicians if they often see skin this adversely affected by treatment. "Oh yes," they said, "We often see patients whose skin is open and bleeding." That made me feel like a real whimp. Today my skin opened. No bleeding so far, but 'not feeling all that whimpy anymore.)

What time did I take that last codeine?

Vanity a thing of the past, replaced by new F words: Fatigue and Follicles

(Today's entry is prompted by my not doing a very good job of responding to email -- so please forgive and don't stop emailing ME!! I'm up for all the attention I can get, as always.)

Yesterday I sincerely tried to quit radiation, but was given a prescription for Tylenol with codeine and the suggestion of Benadryl cream instead. Thus armed, I'm pretty sure I could sleep through the next 9 days if only I didn't have to show up for treatment every afternoon.

The past two weeks have introduced me to Fatigue the likes of which I'd only ever seen heretofore on the faces of very, very sick people.

For a few days I tried perking myself up with Adderall, but it worked for a shorter and shorter period of time each day and higher doses found me feeling druggy and sick to my stomach. It wasn't worth it.

The itchy, red rash on my chest, I'm told, is an encampment of enraged hair Follicles. I hadn't thought of myself as particularly hairy-chested, but apparently I hadn't been paying close attention. The rash, extending from neck to armpit and concentrated most angrily just over my heart, makes comfortable clothing impossible. 'Just one more reason to want to stay at home, on my back, preferrably asleep.

Today radiation switches from TomoTherapy to the robotic zapper machine used for my whole 6-week stint last time. These last 7 treatments with the robot will be concentrated on the scar tissue only (a "radiation boost"), so I'm hopeful the widespread rash will subside and I'll be willing to resume greater activity in the next week or so . . . ? I fear the effects of this lack of exercise in which I've been indulging, believe me.

Oddly enough, I checked with my psyche today and we agree my mental status is better than it was two weeks ago. My sister Elaine claims this is undoubtedly due to her being in town, though I suspect the addition of buspirone for anxiety may be at least partially contributing to a better outlook. Also, I have the start of a 5-o-clock shadow where my bald head used to be. I like to think things are (going to be) looking up.

Getting the shit kicked out of vanity

I was working on an anger sketchbook when I decided to switch gears entirely.

It's time to accept myself just as I am.

'Got a problem with that? I know a good therapist you may want to see.

Last week's photos

Okay, okay, okay. Last week's photos, of the eyes without eyelashes and the bald woman sleeping, were not actually me. I got lazy and grabbed photos from Google Images. To end the confusion, I have swapped said photos with the real thing (see following post). I decided to give you fair warning.

Moods, Attitudes, Solid Husbands, and Damned Little Hairs

Whew! It's been a long time comin', but I woke up this morning feeling downright silly. As in laughing about stuff. Had to call Greg back upstairs when he was ready to head to work so I could read to him the ten best quotes of David Sedaris "Taken Completely out of Context" from last night's show.

No mood of mine surprises the old Gregley anymore. He whistles himself a happy tune and skims the cream off every day whether I'm cowering in a corner weeping or talking nonsense about wanting Tom Waits and David Sedaris to move in with us, rent-free of course.

You gotta love a guy like that because you know he's there through good times and bad. He knows when I get to the point where he has to invite me to sit on the love seat and listen while I blubber. But after he's listened and states his rational opinion about my blubbered concerns, he will pop up, get suited up for a November motorcycle ride, and have the time of his life on a two-hour ride. I was going to say "...on a two-hour ride, knowing full well I'm back home working on getting my shit together" -- but I sincerely doubt any such thing goes through his mind as he's flying down the backroads with his silky white neck scarf extended in the wind behind him like the Red Baron.

My damned eyelashes, after hanging on throughout 18 weeks of chemo, decided they'd had it last week and let go in a way reminiscent of "The Fall of Freddie the Leaf." While I was grateful for how long they tried, I turned on them with a hateful vengeance when they could no longer endure. ("Who needs YOU, flirty little eye hairs, to keep the debris out of my eyes? If you had any better purpose in life, I'm unaware of it! Sure you held my mascara all these years, but in the end, what good did it ever do me? You stole minutes in the morning while I stroked you with black goo and stole more minutes every night when I tried to get the black goo off again. DOWN WITH EYELASHES.)

Pig eyes. That's what I call eyes without lashes. I only wish every woman could experience the freedom!

Yesterday was my 10th radiation treatment, so I'm one-third through. No serious skin effects yet, but I can fall asleep anytime, anywhere, given a few moments alone or in front of Greg's "Jack Frost" series on DVD. Yesterday radiation apppointments were backed up a bit. I feel asleep in a chair with my head against the wall in the waiting room, fell asleep the first time in the tube for the CT scan, and feel asleep a third time in the tube for the treatment itself. Then I grab a half cup of The Martha's crappy black coffee for the ride home and take a nap before dinner in my favorite recliner. Who really needs a life anyway?

Smart Cars and other (hopefully) smart machines

Yesterday I was in my "Itsy" car making a left turn when inside my arc was another black Smart Car at the red light. The silver-haired driver and I made quick eye contact and waved at one another like a couple of crazy women. That, and having Lori introduce me to the Canadian TV series "Corner Gas," made my day. (Some of you reading this would also enjoy this silly-clever show. You know who you are. Check it out. Lori assures me it only gets better with each season.)

Today was my fourth day of radiation. As mentioned earlier, there's new (to me) technology -- Tomo-Therapy. Rather than a robotic gizmo moving above me from side to side and zapping my torso at various intervals like last time, with Tomo-Therapy I'm conveyed into a tube. First I'm placed into my molds* (one mold holds my arms, over my head; the other (nasty cold plastic, makes me gasp every time) fits snuggly over my torso to ensure radiation stays on the surface and doesn't reach my vital organs.**

First I slide into the tube for a 3D CT scan to make sure treatment is going to precisely reach targeted areas. Then I slide out of the tube and wait for a techie to come back into the room to punch buttons to reset the machine in accordance with the position of my innards today), announce my 8-9 minute treatment will now begin, and scurry back out as the conveyor draws me back into the oven. As I lie perfectly still trying not to expose my lungs or heart to radiation, I hear a grinding-clicky sound moving 360-degrees around me, fifteen times. One of my breast-cancer buddies, Jen, with an amazing sense of humor, said she always felt like she was going into an Easy-Bake Oven. Indeed!

So the whole deal, from home and back again, takes about an hour. New technology, twice as long, far more expensive.

This go-around I politely refused one of the fleece ponchos that some well-meaning women's group donates to make us feel better as we sit in the waiting area stripped from the waist up and ready to go. I remember my poncho from last time with disdain; I hated putting it on and trashed it (as I did my winter coat at the airport before boarding a plane for Texas, remember Brenda?) as soon as my six weeks were over. Give me the impersonal hospital gown any day. Fleece or no fleece, this is not a warm fuzzy affair. Just as I would never be comfortable in someone else's choice of clothing, no one is going to present me with a choice of ponchos that suits my potato-sack fashion sense. (Thanks for the apt description, Susan.) The ponchos are always wildly patterned and adorned with gaudy buttons and fancy stitching. It ain't me, Babe. No, no, no, it ain't me.

*My molds were made a week ago when I was also given a fourth tattoo on the chest to mark a spot that apparently means something to someone.

**Greg programs robotic equipment for a living in various manufacturing plants. I know these machines can go terribly awry. This is some scary shit and every day I wish Greg was there to check out the machine before I slide in.