32 ZAPS: c'est finis: posting from 3/14/17

32 ZAPS: ç’est finis

Last Friday, March 10th I put on my Capezio tap shoes and tapped my way in and out of the radiation room - my last of 32 zaps. With my shapeless cotton johnny untied and loose around my shoulders, this vision - vaguely resembling a costumed modern dancer, tapped a solo dance sans music. With my three beginner tap lessons behind me I tried the shim sham but hadn’t perfected it yet. So I went to the f-lap, f-lap, f-lap and then many small tap-a-taps. The radiation techs were so happy, all smiles and of course, they gave me a round of applause. After my treatment, I received a diploma! 

Imagine me doing this routine all the way to the ray gun:
https://youtu.be/YMhcjM02asg

I’d like to say this was easy, M-F for 6 ½ weeks but it wasn’t. Yes, it went fast, faster than I would have imagined. I got more at ease with the drill: undress, don the johnny with open back , uncover one breast, get zapped - first entire breast: long sounding drones with and without the whirring of the aperture opening and closing - and then the machine pivoting for its next target - the underarm scar where lymph nodes once were and side of the breast. The whole procedure was usually a few minutes with the set up taking the most time. They go for accuracy! 

At the mid-point, my 16 zaps my breast was pink, but by the end of the 5th week is was shocking red and really hurt. With seven zaps left, the technicians and a radiology/oncologist remapped my breast for a targeting of just the tumor site. They had all sorts of pieces to fit on the machine, much like a kitchen aid mixer. Then they drew with a sharpie a circle and then marked three spots and covered them with clear round stickers. The technician told me that if the stickers got bothersome I could take them off. So after I got home on that Friday I thought I didn’t need them. When I appeared on Monday, the technician named Barbara was surprised to find my stickers gone and the sharpie circle nearly invisible. “What happened?” she asked. I said, “I took them off, and they were hard to get off, I had to really work at it.” There was enough of the sharpie line left that my site could be reconstructed for treatment plus they had taken exact pictures of the original stickers so we went with that. I told her that given who I am, I needed to be told, “Don’t take those off and if you think you have to, call us first.” 

What I learned from this radiation treatment was that it was much more life affirming than I would have ever thought. Sure the burning is harsh on your skin, but you know it’s effective, you can see it is working to kill off microscopic cells that you don’t want in your body. The staff was so kind and helpful, I saw a doctor every week and there was an old fashioned patient chart! Yes, a chart that had lots of handwritten notes and pictures and it was so reassuring that so many people were looking at it. I also found that I met several frequent zappers in the waiting room. People talked with one another and it was less dreary than Dana Farber.

So except for a follow up visit to the doctor in about a month, I’m done. And the goal is to have this place like Brigadoon. It only appears once in a hundred years and then vanishes. That’s their goal and mine too! Enjoy Gene Kelly and Cyd Charisse.

https://youtu.be/dHJYqcjXsl8

As for the other part, Chemo #7, I became more proactive. A friend in treatment right now for breast cancer at DFCI told me she has a social worker that I could email. I did and found a wonderful caring person who could help me with my feelings of not connecting with my “team”. I wrote up questions for my oncology research nurse and she filtered them to the doctor at my visit on 2/28. Here’s what I emailed the nurse:

"1. Where do I currently stand on my DFCI treatments, specifically my status with the blood work and the lab results. 
2. Has my "team" noticed any significant lowering of my white blood cell counts since I started the T-DM1 drug?
3. Has my "team" noticed any changes in my blood work since the beginning of my protocol? and if so, what does that mean?
4. I have mentioned each time that I feel dehydrated. Does this have long term effects to my body, specifically my other organs?
5. Am I entitled to any information related to the results of the T-DM1 trial so far? For example, what might I be told if the trial is not working as intended? 

I would like to request that I have some verification from the doctor that there is monitoring of my DFCI care. It would be very reassuring to me if you could bring a current update of my case signed by the doctor. I could use some assurance that someone is actually overseeing my treatment and care.

I have been concerned, and thought I expressed it succinctly on my infusion visit in January, that I have felt there is a communication issue with my treatment at DFCI. It's clear that I will not be seeing the doctor through the end of April. I will be 1/3 of the way through my treatment and with 2/3 left to go, a report of some kind, even a doctor's synopsis would at least provide some concrete information on my progress or lack thereof on this T-DM1 medicine."

What I found out is that despite feeling bleh or meh, I’m doing really well. My bloodwork is good and they probably don’t have too much to tell me. The doctor also agreed to be at my next appointment and had also given me an option to connect with her by phone. So I”ll see her next Tuesday 3/21. 

I hope that there will be a breakthrough with their communication with me as a newbie patient. I had begun to lose confidence in this team. I learned from the social worker that I can switch to another doctor and not jeopardize the drug trial I’m on. So finger’s crossed for next Tuesday. However, I own a part of this, and it’s clear I need to do some soul searching as to what I’m looking for in my cancer care or just care in general. What if they aren’t warm and fuzzy, maybe that doesn’t matter. I’ll give it some thought.

If I calculate correctly, my treatments will continue until the very end of September. After that there will be follow ups and of course my connection with this oncology team will be long term. So I need to figure out if it’s worth staying with them or try another group. Tuesday’s meeting will be one more clue to my long term relationship.

Happy St. Patrick’s Day…. maybe my T-DM1 drug will have food coloring in it to make it green. Maybe?

1/2 way through radiation & the Patriot's Championship parade; Post from 2/20/17

A new day is dawning… everyone can feel it. The days are longer, and sunsets later and my mood is better. I may be physically feeling just the same “meh” but my mood is better. 

I’ve finally hit a progress marker with my radiation. I have completed half of the treatments. 16 down and 16 to go. I missed a couple of zaps because of bad weather and they’ll tack them on at the end so I’ll be finished my radiation treatments in the second-ish week of March. March 8th was an end date but with the two missed appointments and the possibility of one or two more if we have bad weather...I might go into the third week. It’s not much fun to be radiated every M-F but I’ve had the most interesting buddies to accompany me to and from the treatment center. I’ve had a great time catching up with friends that I haven’t seen in some time - gal talk - gossip. I’ve ended my treatments with a trip to the mall to the Christmas Tree Shops (I thought it was just Christmas stuff, WRONG), late lunch/early dinner at On The Border, Dinner at the Lion’s Den in Stockbridge, a trip to COSTCO, a post-radiation martini, and great conversation. 

One of the most unusual things I did in week one of radiation was Zap and Tap! Yes a tap lesson with my friend Leigh. I haven’t put on tap shoes since college and I wasn’t that good at all back then, but last year just before my diagnosis I bought Capezio tap shoes while visiting a friend in NYC. It was so much fun to find XXL tap shoes with no heel for this hoofer of a certain age. The shoes have remained in their red box waiting for my treatments to be done. However, a dance teacher from my college days has a studio about 20 minutes from my treatment center, so I packed my red Capezio box and Leigh and I went for a tap lesson. I did fine but my energy gave out about 35 minutes in and I stopped. I hope to try it again later this week and laugh my ass off.

Cancer treatments are still plugging along and at a much slower pace than the radiation treatments. Thomas went with me to Boston for the 2/7 chemo #6. We left Monday, the night before chemo due to bad weather forecasted on Tuesday morning and the NE Patriots parade scheduled for 11 a.m while we’d be driving to DFCI. 

Thomas and I got up early and headed to the parade and had an excellent view right on Copley Square. The weather was cold and snowy/slushy but crowd was so energized and the people surrounding Thomas and me were just out for Patriots fun. One young man, three sheets to the wind, tried to cut through our jam-packed spot. The sot kept saying “I’m not trying to encroach on anyone’s space.” as he staggered and pivoted toward the front. A man next to us told him “I’ll take a picture for you, but you can’t lean on me.” only to have the drunkard lean on him. Then the group started pushing him back and telling him with their Boston accents, “Listen buddy, I’ll give you one minute to get back or I’m getting a cop.” The drunk says “What am I doing wrong? I’m just standing here.” Then the crowd starts in saying “YOU CUT”, YOU’RE A CUTTER!”, The group calls “Officer, Officer”, the cop comes over but tells everyone to simmer down. Then Thomas starts the Game of Thrones chant “Shame, Shame, Shame” Everyone in a 6 foot circle around us keeps up the chant and the funniest was the drunk, he joined in on the chant never realizing it was him that was being called out. People were annoyed but not angry at him and as luck would have it, our spot was right near a handicapped gated section. As people came in and out of that section, the drunkard managed over into it and got out of our way. 

Treatment #7 will be next Tuesday 2/28. Not much to look forward to except getting one more treatment out of the way. 

I'm one flap-ball change away from the no-hop Senior group of tappers routine enjoy: 

Syncopated Ladies Tap Dance Salutes A Legend

Not for commercial use. Solely creative expression. @SYNCLADIES www.SYNCLADIES.com Syncopated Ladies Tap Dance

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Feeling like a number not a patient or human... post from 1/30/17

It seems when I don't do something timely my friends start wondering if everything is ok with me. To be honest it isn't. I had a kidney infection in early January and went on antibiotics, stepped up my water intake to flush the system and that helped and I actually felt better for a good 5 days! I had another round of chemo (#5) and I was mapped for radiation and then came down with a bad head/sinus/chest cold. My radiation treatments started on January 25th. So as it stands now, I'm several days into daily radiation (sans weekends), it will continue until March 8. It doesn't hurt yet, but they tell me after about two weeks the breast is sore like it's sunburned.

I've also had some soul searching about me and my treatments and my expectations about my treatments and my doctors. Mostly I find that I have been so anxious about procedures and timelines that I've wasted my energy trying to make a medical system different than what it is. I make assumptions that I'm scheduled for this treatment or that treatment and find out that it's only a consult! I discovered that a treatment plan for radiation wasn’t finalized much less started and I thought, "what the hell?" 

I've felt alone, very alone in my managing my health care and wondering about my medical team. But it's not quite that way it seems. Sure, I'm pushing and nudging what I think is moves my treatments along, but I don't know anything about radiation/oncology and I know far less about my chemotherapy trial. 

The last three evening drives to Springfield for radiation I've talked out my concerns with my son Thomas. I realize that as far as my DFCI oncology treatments go, I'm never going to have a "supportive" team. I'm in a trial, a research trial, I'm a number. There's no social worker/patient care, it's just the facts, the data to enter into the computer. So now I know, I'm hardly ever going to see my oncologist, might see her PA more but that will not be often, I'll see the research nurse Janet (who has been a disappointment as far as nursing goes) and I’ll call it a day. Would I change my mind about being in this trial? No I wouldn't. I don’t have a lick of doubt about being at this top notch cancer hospital or the treatment I’m in. Do I wish there were more of a human connection? Sure, but there isn't, there hasn't been and my getting miffed, annoyed and vocal about my dissatisfaction about lack of a team just falls on deaf ears. I'm not sure they even know that there is a lack of patient care. But I assure you there is. Ah well. 

I am bolstered by my dear and loving friends, I find it hard to be my own cheer leader but I have a whole team which includes each of you cheering me on. I can visualize you building one of those human pyramid towers and I see you smile and give extra shakes on the pom-poms and tumble around and fly into the arms of strongmen. Rah! Rah! Rah! What a show!

I continue to work part time at my job and will switch to mornings only while I get radiation appointments in the afternoon. I start my first full week of radiation and on 2/7, I have my #6 chemo infusion. It’ll be a long day getting zapped first then zipping off to Boston for the drugs. Each step is a step closer to finishing my treatments for good! Won’t that be nice!

And a little Mary Tyler Moore and Dick Van Dyke:
https://youtu.be/J2yqE6xOh38

Starting the New Year right: post from Jan. 7, 2017

“Well you up and did it.” That was the quote I sent to my friend Jeanne when she started a Go Fund Me account to help me and my family not go into huge debt this year with the budget busting medical co-pays and other ancillary expenses associated with treatments. Jeanne’s response was: “I'm so glad you think the narrative captures the experience. I really wanted people to know just how draining this all is. And honestly, until I watched a friend’s family contend with little daughter’s illness I really had no idea. So it's important for people who have not confronted catastrophic illness to know that insurance does NOT cover everything - and in fact there's a substantial amount for the patient and their family to pay.” 

I get weepy just looking at the generosity of my friends and friends of friends whom I barely know helping me with the expenses I have to pay above and beyond last year. But it’s not all about money, I have been given great gifts from friends, food, blankets, lotions, meditation tapes, books about surviving cancer and many more treasures given from the heart. I’ve had friends make sure my lawn was mowed, my car working in proper order, my cupboards re-organized by throwing out ALL expired food, cleaning out my refrigerator in the same manner...those pickles I made a couple of years ago and never ate???? Well they are gone now. So many specific acts that have helped me and Mark and yes, all the prayers, cards, telephone calls of care and concern. I’ve cherished each and every one! Yep, I’m weepy all over again just writing this.

As for my current state of being? I backtrack and say I had a great Christmas! All my children were here and my 5 yr old granddaughter Zina! What a peach! Having everyone home was such a lift to my spirits. Zina and I spent every day working on the Jacquie Lawson Seaside Advent Calendar. We spent a lot of time together so quality time was in abundance.

I had to have a chemo treatment #4 for those counting on 12/28. Jess’ birthday was the 27th and I didn’t want to have it on her birthday so we shifted the day. DFCI was closed on Christmas Monday and the backlog of patients that had to be jammed into the 27th & 28th was unbelievable. There were NO seats available in the large waiting room, my drug cocktail that has to be prepared in the pharmacy and checked 5 times was backlogged and I had to wait, and wait, and wait. I hated waiting and started down that rabbit hole… not a good thing at all. It was a long, long day. 

So here we are in January...I’m getting geared up for the next chemo treatment on the 17th, but before that, this week I have a planning session for my radiation. My six weeks of radiation will begin after the 17th - the official start date has not been determined. And I just got an infection that requires antibiotics so that's in the mix as well... ah well...another blip what's new about that?

I hope everyone had as comforting a Christmas as I had with my children around - the first time in 5 years they have all been in the same place at the same time! I hope each of you will have a wonderful 2017 and the year filled with good health and happiness. I’ve been blessed by all of you and your kind thoughts, words and deeds. Thank you all for filling my soul with joy!

New Year's Resolutions: 12/31/16

New Year’s Resolutions for 2017:

1. Less crankiness at DFCI for chemo treatments #5 through #17

2. Less crankiness at Baystate Medical Center in Springfield for 30+ radiation treatments
beginning in 18 days (six weeks x 5 times a week)

3. Keep a better filing system for medical papers and bills

4. Keep water bottles with me at all times

5. Keep using lotions for drahness

6. Have more dinners with friends and have a few more laughs than the day before

7. Get the tap shoes out of the box and learn a shuffle-ball-change!

Happy New Year to all my friends and family. Thank you all for your words of kindness and support I am deeply touched.

Julie Andrews Sings Auld Lang Syne

Fair use tempers copyright's exclusive rights to serve the purpose of copyright law, The purpose and character of the use, including whether such use is of c...

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Visiting three churches: 12/13/16

I went to three churches yesterday even though I’m not much good at religion but being a choral singer I just can’t get enough of Advent music. It’s Christmas time and I ventured out to get all the spirit I can muster these days. 

My third church service was in a small village of Tyringham at the Tyringham Union Church. The 5 p.m service featured five friends of mine playing dulcimers. My second church visit was a 3 p.m. a cappella concert at the Episcopal church in Stockbridge. A sturdy stone church with beautiful stained glass windows. And my first service was where I usually attend, the First Congregational Church of Stockbridge. It’s historic. It’s beautiful in its solid 19th Century Yankee look. 

The sermon focused on the Advent story and John the Baptist heading into the wilderness getting ready for the Baby to be born. The minister related the wilderness in a way that seemed so apt for me right now. He mentioned that the wilderness was not just a physical place but could be an inner spiritual place. It could be unsettling to be heading into the wilderness (my cancer treatments and the unknown that lies ahead) but it could also give strength to those that make the venture. It’s a time we can examine our lives and our hearts.

The service ended with a reading of Maya Angelou’s poem Amazing Peace.

AMAZING PEACE: A Christmas Poem
by Maya Angelou

Thunder rumbles in the mountain passes
And lightning rattles the eaves of our houses.
Flood waters await us in our avenues.

Snow falls upon snow, falls upon snow to avalanche
Over unprotected villages.
The sky slips low and grey and threatening.

We question ourselves.
What have we done to so affront nature?
We worry God.
Are you there? Are you there really?
Does the covenant you made with us still hold?

Into this climate of fear and apprehension, Christmas enters,
Streaming lights of joy, ringing bells of hope
And singing carols of forgiveness high up in the bright air.
The world is encouraged to come away from rancor,
Come the way of friendship.

It is the Glad Season.
Thunder ebbs to silence and lightning sleeps quietly in the corner.
Flood waters recede into memory.
Snow becomes a yielding cushion to aid us
As we make our way to higher ground.

Hope is born again in the faces of children
It rides on the shoulders of our aged as they walk into their sunsets.
Hope spreads around the earth. Brightening all things,
Even hate which crouches breeding in dark corridors.

In our joy, we think we hear a whisper.
At first it is too soft. Then only half heard.
We listen carefully as it gathers strength.
We hear a sweetness.
The word is Peace.
It is loud now. It is louder.
Louder than the explosion of bombs.

We tremble at the sound. We are thrilled by its presence.
It is what we have hungered for.
Not just the absence of war. But, true Peace.
A harmony of spirit, a comfort of courtesies.
Security for our beloveds and their beloveds.

We clap hands and welcome the Peace of Christmas.
We beckon this good season to wait a while with us.
We, Baptist and Buddhist, Methodist and Muslim, say come.
Peace.
Come and fill us and our world with your majesty.
We, the Jew and the Jainist, the Catholic and the Confucian,
Implore you, to stay a while with us.
So we may learn by your shimmering light
How to look beyond complexion and see community.

It is Christmas time, a halting of hate time.

On this platform of peace, we can create a language
To translate ourselves to ourselves and to each other.

At this Holy Instant, we celebrate the Birth of Jesus Christ
Into the great religions of the world.
We jubilate the precious advent of trust.
We shout with glorious tongues at the coming of hope.
All the earth’s tribes loosen their voices
To celebrate the promise of Peace.

We, Angels and Mortals, Believers and Non-Believers,
Look heavenward and speak the word aloud.
Peace. We look at our world and speak the word aloud.
Peace. We look at each other, then into ourselves
And we say without shyness or apology or hesitation.

Peace, My Brother.

Peace, My Sister.

Peace, My Soul.

Feeling like a punching bag: 12/8/16

I sit here tonight having completed an hour nosebleed because I grew lax on my Ponaris nose oil. It’s 48 hours after my treatment and I feel like crap! I have a prescription for constipation, sleep aids for anxiety and sleep, mouth rinse and special fluoride toothpaste and a baby soft toothbrush, and pills for nausea. Gosh I'm set! It's head-shaking madness and as long as I keep at it I should be ok. 

I mentioned that last week was a processing week for my continued treatment. I made an appointment for a radiology/oncology (R/O) consultation appointment at Baystate Medical Center in Springfield last Tuesday Nov. 29th. I figured it was time to get a second opinion and I knew that being zapped for up to 6 weeks 5 x a week was approaching fast.

In my mind radiation treatment would begin in mid to late January. :
1) Surgery,
2) 28 days after surgery - chemotherapy for a full 12 months.
3) Twelve weeks after chemo onstart radiation starts for six weeks @ 5 times a week. 

All of those dates were based on standard treatment administered here in the Berkshires. But all of that was adjusted when I was able to get a cancer drug trial at Dana Farber.

All I can say is this fact finding journey reminds me of a weighted clown punching bag. I think I’m understanding what the course of treatment will be for R/O and “WHAM” I get punched and I tip this way and that. I hear the doctor as he says he’s fairly certain that my heart will not be damaged in the radiation field, but (geeze) [my words not his] the lungs will get a small amount of damage. I hear him tell me that the radiation will be comprehensive for the first five weeks at five times a week on the entire breast. I’ll get burned, my skin will be like a sunburn “but there are medicines that will help ease the soreness” he says. And then there is the lymph site. That will get zapped and that will be really uncomfortable, but again “there are lotions to help that.” Then when you think you’ve been punched enough there are the final treatments that are targeted just to the tumor site. At least 30 times being zapped. Feeling crappy. Oh Joy! 

The doctor mentions that the treatment usually begins after the third cycle of chemotherapy and “WHAM!” my punching bag is thrust backward and side to side as I tell him that I’m having my third cycle Tuesday 12/6 and that my children are coming for Christmas and I don’t want to be in daily radiation at Christmas...that somehow I think he doesn’t have it right...the timeframe. It should be mid-January! He explains that if I get the treatment done I’ll have many more Christmas gatherings with my family, or maybe I need to think that the T-DM1 protocol I’m on at DFCI needs to stop. 

My friend Margaret is with me and explains to him what I’ve been led to believe from other doctors. Then she brilliantly asks if he has treated other patients with the T-DM1 drugs and he says he hasn’t so he pivots and says he will get immediate clarification from my oncologist as to when the radiation needs to begin. He calls a couple of days later and clarifies that the treatment needs to begin after the fourth chemo cycle and since that is at the end of December, my treatment for radiation will begin in mid-January. My punching bag resets itself and I’m stable for now.

Then I look at the paperwork DFCI gave me about side effects. One sentence says that I should not get a dental cleaning while under chemotherapy. “WHAM” I’m feeling punched again. WHAT? I call my dentist and get the skinny. He had no idea of my current medical crisis but informs me that my dehydration and cotton mouth is really bad for my dental health. I need to immediately take action with Biotene oral dry mouth rinse, he tells me saliva is a tooth protector, so this rinse will help the ph of the mouth. He encourages lots of products and tells me to ditch my old toothbrushes, change them frequently and be vigilant with my oral health. I whip myself into a dental frenzy imagining me toothless or with impending $20K implants and go out and buy baby toothbrushes so very soft, Biotene in every form, toothpaste, spray, gel and rinse. I daydream about lemons and try like hell to produce saliva and sound like a grade school jerk slurping saliva swishing loudly in the mouth. ICK. I may be overkill but I’ll do what it takes.

It’s a matter of perspective I keep reminding myself. There are many others who wish they were dealing with that extra primping!

https://goo.gl/images/UQe6a2

December 3, 2016. Adjustments

There is a lot to update and I'm trying to process it all. It's not all bad just an adjustment to what's ahead. Third chemo coming up on Tuesday and I have my car blanket ready and making the list to remember to take a lunch so I don't get grumpy like last time. 

In the meantime, my friend Dottie gave me the gift of a Jacquie Lawson Seaside Advent Calendar. She gave me one last year and I viewed it all the way until this past October! I loved it. Now I"m loving the Seaside Advent Calendar! Here is a selection of music that keeps me calm and feels restorative. I hope this becomes everyone's ear worm... so soothing. 

Subscriber and Supporter thank you - Pastorale from Corelli's 'Christmas Concerto'

Concerto Grosso in G minor 'Christmas Concerto', Op. 6 No. 8 - 6. Pastorale ad libitum: Largo Arcangelo…

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11/17/16 Drah, Drah, Drah

I’m just getting around to posting. I felt yukky all day. Most of the problem is how dry I am. Dehydrated...really dehydrated. My eyes, mouth, skin, and anything else you can imagine or really don’t want to. I’m having a heck of a time trying to stay on top of not being “dry, dry, dry, dry, dry” I’ve got pills both soft gels and tablets and powders and bottles of water and throat drops and eye drops and skin lotion - all not helping much. 

Years ago when my husband Mark was working in New Orleans on a movie, My daughter Jessica flew down from college and met up with my sons Ted and Thomas and me during Mardi Gras. It was just before Katrina would strike later that year. Jessica and I were in a department store that was giving make-up demos for free. Jessica wanted me to also have this makeup make-over. I didn’t want to but the lovely Southern lady convinced me to sit and have her do my makeup...that was until she looked at me and said “oh my (mah), mah, mah, mah, mah, mah! Those are not age wrinkles, you are just dry (drah) drah, drah, drah, drah, drah!” So she got every emulsifying product she could find and lathered it on my face to plump it from prunedom. I was gooped up and truth be told I did look better with the goop than the drah face. 

So here I am years later and I’m back to being drah, drah, drah. This time caused by the medicine that must be extracting every HER2+ cancer receptor. That’s all I can think of that makes sense to me, but all this dryness has it’s toll. So today it hit me...and if you can’t stay hydrated no matter what you do you’ll have discomfort. 

The truth is, this treatment process is just at the beginning. I am not having fun yet, despite the sombrero picture and my fantasy of the first class business seat taking me in a plane to far off lands. I realize I deluded myself into thinking that if I were chosen for weekly chemo treatments it’d be fine. Every week goes by so fast that I know I would have done it but I don’t know how I would have organized all the rides to Boston. The best outcome for me was getting the trial for every three weeks of chemo treatment. I’m grateful for the three week infusion protocol, but I’m feeling “been there, done that”....only I can’t say “done that” until November of 2017.

I’m breaking my keeping my low beams on rule, seeing just far enough ahead to not get overwhelmed. Ironically, my car’s low beam bulb burned out, so I was really driving on one low beam...visibility in the November night even less. No matter how you slice it..this treatment regimen stinks. 

So I carry on as I must, and have a medicine chest of lots of products to keep me in the pink! I have bottles of water everywhere and chapstick in every room of the house and every pocket of my pants. I’m sure it’s temporary since I felt pretty good last week before treatment #2. And I suppose it’s just going to be this way until the end of 2017. Maybe I’ll get in the rhythm of the treatment, it could happen...with every treatment I’ll get a bit wiser what my body is going to do with the 30 minute IV dumping of T-DM1. Maybe it was too much dose too fast? Maybe I’ll find the right balance of medicine and less “drahness”. We’ll see.

I've got the you don't know the half of it dearie' blues: Posting of 11/5/16

"I've Got the You Don't Know The Half of It Dearie' Blues"

I'm nearly 12 days out from my T-DM1 cocktail. If I give myself a checklist report on how i'm physically feeling with smiley faces, I continue to be "neutral" or emoticon "meh". I continue to have twinges of nausea, headaches, constipation and tiredness. Perhaps I've been getting better at being proactive for the symptoms...if I try a food and the tummy "glurps" I stop. If I have a small sip of wine and my head starts pounding, I stop. My medicine chest is a testament to the wonders of laxatives. I have more selection than most pharmacies and I'm proactive about rest and sleep and naps. The wonder of naps!

My psychological self is emoticon "drained". My husband Mark has been ill for so long, so very very long. He had a stroke on Thanksgiving day in 1999, had subsequent secondary effects from stroke, got Lyme Disease, developed spine issues, muscle issues, drop foot, cognitive issues, had kidney stones, and within the past three months: kidney issues reappeared and making its first appearance: Rocky Mountain Spotted Fever that landed him twice in the ER and 3 1/2 days in the hospital. And when you think the fun is going to stop, Thursday just before midnight...another emergency trip to the ER for pain...a kidney stone! 

The last four months while I've been dealt this health setback and have had non-stop medical appointments, surgery and now am in full blown chemo treatment, Mark has been having his own host of illnesses. It's wearing thin. I have been saying the irony has not escaped me that I'm the healthy one of the two of us, but the sad reality is I'm not healthy. I'm sick with cancer, a bad one. I have a year of treatment ahead with daily radiation in 12 weeks. To say I’ve had my fill of hospitals is an understatement. I hate going to them for ME and I really hate double-downing with Mark! 

I guess this is my “wambulance” waa waa waa. Poor me. But I don’t really feel that way. I’m fine, I’m managing - we’re managing. Some days, some weeks and the last few months have been challenges but I wake up each day and hope Mark will have a good day. Will he be able to sit up instead of lying on the couch, or be able to shower and shave and get dressed and go out for coffee with his buddies, and might he be able to work on a small project or two? Every day is different. If it’s a bad day for him...well, I have my part time jobs to go to and I can escape for a while. 

Today started out rough for Mark so I had a lovely long grocery shopping adventure and a trash run at the transfer station that took me most of the afternoon. When I returned Mark was feeling better. Our dear friends called and asked us for soup and salad then we attended a wonderful concert at our church. 

I guess sometimes you just gotta sing the Blues!

Ella Fitzgerald - 'The Half Of It, Dearie' Blues (High Quality - Remastered)

YOUTUBE.COM

Day of First Treatment Part Two: Oct. 25, 2016

PART TWO: MY FIRST CHEMO TREATMENT: THE T-DM1 COCKTAIL

Margaret and I make our way back into the reception area and they point us to the doors leading to the treatment rooms. No doors are labeled “Treatment” and the waiting area is quiet, there are no TV screens featuring FOX news or the latest cooking channel celebrity. So Margaret and I sit for a few moments before being asked to respond to another research questionnaire. I agreed to it so I use the ipad and touch the answers to the questions. One stumps me: “Do you feel more like a woman”? What the hell does that mean? I tell the young woman I hate that question, I just don’t get it, what does that mean? She says I can just leave it blank. So I complete the survey, still mystified to this day the meaning of that question. 

The door opens and we are called to enter the treatment area. We were taken for a tour by a lovely nurse. There are lots of chairs that have curtains that swing around for privacy, many “rooms” have windows and views of the Boston skyscape, There is a snack room with water, soda, candy, yogurt and such. There are beds for treatments if the chairs are all occupied. The nurse’s office is smack dab in the middle of the room and there are two big monitors that tell what patient is there and doctor...it sort of looks like an airport terminal Arrival & Departure sign. So Margaret and I walk the hall, and find more original artwork of fruit! After the tour I am brought to my “room”. I had assumed that the infusion chairs would be much like the chairs that I use in a dentist’s office or when I’ve donated blood in fancy places. I wasn’t far off. I’m right next to the nurse’s station, that’s my view they can see me so I have to be on my best behavior. The nurse tells me that there is free WiFi, cable TV, I have a remote and it’s attached to my chair. Margaret also has a chair to hang out with me. 

The previous week I asked the nurse from the oncology department what I should bring to pass the hours when I started the infusion. She told me to just bring anything. Some people bring a book, some ipods with music, knitting, some take ipads so they can check their emails, so basically anything to while away the hours. I gave it some thought. I brought my ipad and a crossword puzzle. I also thought that maybe I’d just want to be quiet and rest. I had to get to my first appointment at 9:10 a.m. which meant leaving Gt. Barrington at just before 6 a.m. Yes, maybe some rest would be good. I took my airplane travel kit which included: eye mask, earplugs, a scarf that doubles as a shawl, eyedrops and some toiletries. Margaret commented that I was all set for a trip. 

I had two nurses getting the drugs and saline ready. My right hand was ready to be hooked up. The nurses explained that the T-DM1 is uniquely made just for me! I guess it’s mixed in the pharmacy - and she assures me that five people sign off that the drug is exactly what it is suppose to be for ME! THIS IS MY SIGNATURE COCKTAIL! I’m getting a great deal of special attention. The moment of truth comes and the big standard saline bag is waiting - hanging from the pole, and then the smaller bag with the cocktail hangs just to the left. Before it can be started coursing in my vein, one last verification is needed and someone appears to make certain I’m getting the correct medicine. The treatment begins. I now know that infusion time will be 90 minutes, and then one hour of observation. The next treatments will be shorter maybe 30 minutes. This is the first mega-blast.

Nothing earth-shattering happens. It’s just an ordinary IV. I chat with Margaret, she has some errands to do for me like parking validation and a pharmacy order so she takes off and I settle in for a TV-less, ipad-less hour and a half. I reach for my travel kit, put in my earplugs, put on my eyemask wrap the scarf/shawl around my shoulders and settle down with the heated blanket the nurse provided. Without the light and with only a hummmmm of sound and muted voices I relax and think of myself on Air France...in business class...comfortable...and dozing. This was the trip I was suppose to be on but didn’t get to go this year. 

I must have dozed for about 15-20 minutes and I heard a shuffling near my chair. I took off my eyemask to find? Another young woman asking me to answer another research survey! Good grief! So I did the survey. Then Margaret returned coffee in hand, and two other young women appeared asking if I’d like to do a craft. They had yarn and popsicle sticks. I said that I’d be back in three weeks if they wanted to do dream catchers I’d be all in! 

While my first visit to chemo was filled with optimism for getting a target cocktail and fewer infusions, I could see from my “room” directly across was a young woman, chemo hat on, lying on her side in utter silence. She was taking her poison bravely. Her husband sat at her bedside silent...they were just there to get through the infusion - drip by slow drip. I’ll never know her story or what kind of cancer she has but it’s a stark reminder that this is real - very real. There are so many very sick people hoping that the "cocktail" they’re being given will stomp out the cancer. They have lives to lead just like me.

I’m posting the real chemo “room” and my imaginary infusion “room”. Thank God for imagination.

First day of treatment Part One: Oct. 25, 2016

PART ONE;

Tuesday Oct. 25 was quite a mystery for me. There are just too many things a novice at cancer treatment doesn't know. Just stepping into the lobby of Dana Farber from Brookline Avenue is a puzzlement. Sure it's spiffy! Clean as a whistle as you would want, a ubiquitous gift shop, stairs leading up to a reception disk with shiny tiled floors, and in the corner of the all window atrium is a beautiful Steinway piano for people to play, and I've learned that there is a sign-up times for people to play whatever they want.

I've now been to DFCI about 10 times, I can get in the correct lane for heading to the parking garage, I know where the validation desk is for my parking ticket and can pay at the pay station! I know how to find my car 6 floors under the building. I'm getting better at knowing where the less used bathrooms are so there are no waits when I get out of the car from Berkshire County all coffee-d up!

I recognized my oncologist once waiting for the elevator, she didn't see me but still I'm recognizing a few people in this huge complex.
I know where to go to get my bright yellow electronic badge. This device is like a felon's ankle bracelet only classier. It tracks you wherever you are in the complex. They can find you if you wander, which I'm prone to do..so I've been good this time...I haven't set off alarms like I've done in Newport mansions where I just had to peek in the rooms with the velvet cords that say "no entry" and when I enter, the alarms sound...BUSTED! When you get to a particular area or exam room, you push the button and I have no idea what that signals but that's what you're suppose to do. 

DFCI is just a data driven complex, they're sleek and efficient. They keep you waiting as little as possible. The staff is super friendly but not cloyingly friendly. You don't have perky 20 year olds named Kym or Bradley walking and talking too fast to showing you to your exam room. There is a respectful pace... even...tempered...and it gives me a sense of confidence in the staff and the treatment I'm receiving.

On Tuesday, I had my marching orders, Blood work, then EKG, Then Oncologist, then Treatment! Yep, it was happening...TREATMENT! The day of reckoning! Which protocol would be randomly chosen for me? 

I got my badge, potty break next, then blood work all with extra vials for research that I agreed to, then the elevator to floor 9, that is clearly marked Breast Oncology... more check ins and to the waiting area, a comfortable lounge and almost immediately a voice "Madonna B"... vitals time... so thank God weight is done in the Metric system, I seem so much lighter that way... and blood pressure. I'm amazed that while I feel in control and calm, the blood pressure cuff doesn't lie...I'm anxious, it's way into the 160's, as I wish my weight was.... I mention that it's the "white coat syndrome" and that I've been taking my pressure at home and it's in the low 120's regularly. No one says a word and then I'm ushered to my exam room. Time to push the button. 

As a side note, DFCI has amazing original art! The halls, the cafeteria, the patient rooms are filled with paintings, watercolors, sculptures. It's like an art museum. Famous artists, local artists. I don't think I've seen a framed print at all! This makes me stop and check it out...OH! I recognize a Red Grooms piece... the paintings below are in the main waiting room and the abstract is in the examination room. I'll get the Red Grooms later.

So as I wait in the examination room, the nurse comes in to tell me all the data from blood work and the EKG is being entered into the computer and once that's done I will know which variation/protocol I'll get from my HER2 Positive cancer. The doctor arrives and explains that the data is kept in a computer ..I can't remember where she said it was...and that it analyzes all the data and then chooses a protocol, no one knows except the computer. It's a mystery. I ask her how many patients she has on this trial and she says three others besides me. It takes about 25 minutes and she comes in to tell me the computer chose the T-DM1 protocol and she's very happy. The other three patients she has were given the standard protocol of Herceptin and Taxol. They will have treatments every week for one year, I will have the cocktail and be seen every three weeks for an infusion with very minimal side effects. She's happy, Margaret's happy and I'm very happy and very relieved to know that I can plan the next year. 

Part 2 continues later....