Bald is Beautiful

I’m writing this on the occasion of my 100th radiation treatment. Only 6 more.

Update on my most recent trip to Nashville and Sarah Cannon.

I met with Dr. Erika Hamilton who is director of the clincal trials and two of her team. They are all mid thirties to forties, one was about seven months pregnant. and interestingly all had long blonde hair (yes, I envied their hair since I’ll be bald again pretty soon). I was so impressed that they all chose to go into a difficult medical field, and from what I’ve seen at Sarah Cannon, the facility is largely populated with female health care workers. Yay for smart, capable women. Thank goodness so many women are doctors these days. I like this place!

Hamilton said she thinks that they may have a phase one clincal trial for me. (That’s early stage of testing. Gets approved after it moves through 3 phases.) It’s an oral drug called Rebastinid which I will take along with chemo drug taxotere.

I will drive to Nashville once a week to get labs and chemo. I will take the pill a couple of times a day. Supposedly the side effects are not bad and they’ve had a 50-60% success rate with the drug which is supposed to be an anti-angiogenesis drug which will stop cancer from growing new vessels.

The drug company will pay for my hotel if I have early appts or I have to stay for a long time. The nurse coordinator said I might be there 8-12 hours the first day. They will do all kinds of scans for the drug company,

But before that starts I will get another cat scan on March 30 to start the process so they have a baseline of what my tumors look like.

After 8 weeks they will scan again. If cancer gone yay for all of us. If not then we will go with more traditional standard of care.

I will lose my hair again with taxotere. Sigh. Thank goodness for wigs. And I will be bald through the first of June, maybe longer.

But if I’m put on this protocol I’ll be pleased. And hopeful. I’m hoping that next Wednesday will be the end of radiation but if these drugs fail I may be back to radiating my left side. I hoped I’d never have chemo again but never say never. I’m just grateful I didn’t go to a hair stylist for a “real” cut or color. Catch ya later!


Children and Cancer

Today when I went in for radiation, a whimpering, tiny girl was getting on the scale to be weighed. It reminded me of the poem I wrote when Dan was in residency at OSU. It was also the first poem I ever had published. (Thank you Linda Parsons and Candace Weaver). A little known fact, my husband used to treat most or all of the children in town. Many radiation docs didn’t like the job. It was hard on Dan too esp. since we had three kids at one time under the age of 6. I wrote the below poem when Dan came home from work one day and said he almost started crying, looking at a 4 yr old in the waiting room and he knew what lay ahead for her.

Residency: Incantation

 In the outer office

a bald four year old

on her mother’s lap

shares a fairytale book

about gnomes and kings.

I read my notes: her life

an endless procession

of potions and spells.

Her mother turns the page;

I flip her chart.

My throat tightens

as I wish for magic.

I call her name.

Now I have a young doctor who has three small children and when I spoke to him the other day about the toddler, he said, “Yeah, it’s hard. Dan knows.” The good news is that children often have a good prognosis and Dan said one child was so sweet—he got anesthesia before radiation and he would say to his mom, “I love you. Good night.” Children often can’t stay still (vital!) for the radiation so they put them to sleep. And another child who was about 5 had a walker because he had cancer and every step he would say “Ouch.” That one breaks my heart.

So these children put my cancer in perspective. Plus I heard about two friends—one of whom was stage 4 with three small children and she died—and another who had reconstruction in December and just found out she has cancer in her spine and pelvis. She was told she would have two years at best. Tip for those considering reconstruction, if you have a high grade tumor, I’d wait on reconstruction although I understand the desire to look “normal” again.

When I start to feel a little sorry for myself, I remember these things. This morning I woke up with both sides aching. Left side aching because of pleurisy although I’ve been prescribed celebrex for the inflammation and my right underarm starting to burn where I’m getting radiation. I have 10 more boost treatments so I expect I’ll be complaining a bunch more :). I finish maybe March 18 having been treated with radiation 105 times. Then I will start a new regime I guess for the cancer that’s popped up on my left shoulder. We are looking into a clinical trial or maybe electron radiation for that area.

But I woke up grateful—grateful I can write, I can walk without pain in my legs, I can talk to friends, drive my car, sleep in a good bed. My younger sister is in the hospital now, confined to a bed til she has surgery on her broken pelvis. So sorry Barb.

Recently I’ve been meditating on mortality and was thinking about Country Joe and the Fish all week especially with elections and the political hoopla/ coronavirus/ tornado in Nashville. Here’s my new version of their “Fish” song.

It’s one, two, three. four

what are we fighting for?

Don’t ask me I don’t give a damn

Next stop is crazyland

Five, six, seven

open up your pearly gates

Well, there’s no time to wonder why

Whoopeee we’re all gonna die.

So be good to one another and enjoy your life. In Mary Oliver’s poem “Summer Day,’ she asks”

Tell me,

what is it you plan to do

with your

one wild and

precious life?


https://m.youtube.com/watch?v=WOo13RnfaMc



Blue Roses

Do you remember the play The Glass Menagerie by Tennessee Williams? This is an appropriate question coming from Knoxville since Williams’ dad Cornelius is buried here in Old Gray cemetery. I visited the grave last fall and it’s a flat grave to the right of archival building as you enter.

If you remember the play, you will remember that the fragile protagonist Laura mentions that she had a crush on a young man Jim (the gentleman caller) in high school because he was kind and called her blue roses after he heard she had pleurisy.

That’s what I thought of yesterday after my Cat scan results came back. The results didn’t show cancer anywhere other than my lymphs on right side currently being treated. It didn’t even show the cancer on the left that was biopsied (positive) on Monday. It’s on the skin and subcutaneous lymph channels so it’s hard to detect. I’m just happy I’m still stage 3 and this cancer is regional.

But what the scan did show was some pleurisy (a little fluid) in my left lung from all the radiation. 72 on left and 22 currently on right. My rib area has been painful and no one has been able to tell me why. So at least I now know why I cough a little before I go to bed and why it’s hard to turn over.

So like Laura who felt that the blue roses labeled her as a “special” anomaly, I identify, since my cancer has acted very strangely, perplexing almost everyone. I’d like to be “normal” and healthy but I’ll take blue roses over cancer.

Anatomy lesson

Those of us with breast cancer throw the words lymph/lymph nodes around. “I had 12 lymph nodes removed.” Etc. Etc. I thought it would be helpful to see the extent of the lymphatic system. My cancer is in lymphatic system so it can go anywhere. Thank goodness it’s not—and it’s still regional (in breast area). But here’s a diagram. Hope it helps in understanding how our bodies work. Pretty amazing.

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Take another little piece of my heart now, cancer

Biopsy was not good. Got the results in Kroger and almost fainted. Not really, but I felt light headed. Dr. Midis dug out a nodule on my shoulder yesterday. Remember those innocuous bumps from last blog? Breast Cancer. Dermal. Ductal. High grade invasion. (That means it’s aggressive.) It’s obviously in my lymph nodes.

I told Lisa in Dr. Midis’ office that cancer is destroying me a piece at a time. I told her I was fine—I was taking a Xanax. She said take one for me.

What will they do next? I have no idea. Stay tuned.

https://m.youtube.com/watch?v=D8JzwrD5dvk

A woman who knew loss

A woman who knew loss

Living on Borrowed Time

I don’t know if this is happening til I get a punch biopsy, but these bumps on my shoulder are making me nervous. Breast cancer can get in your lymphatic system as mine has. My hubs (who started cursing and never curses) and rad doc have looked at it and I’ll soon get a biopsy. Here’s a graph of how lymphs track on the chest area. Warning there’s a drawn breast in the photo so…

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So all this makes me nuts. This is my left side that’s been radiated like crazy, but it’s above the radiation line. The 45 chemos obviously didn’t touch it. What are they gonna do? Take off all my skin? Radiate again? This is making me crazy. The disease is relentless. One day at a time. Breathe. I’d appreciate prayers. Venting through writing. PS punch biopsy at one on Monday. Loooong weekend.

Dr. Radiance or How I Learned to Stop Worrying and Learned to Love Radiation

Did you get the Dr. Strangelove allusion? You know the movie where Peter Sellers is riding the bomb?

I’m half-way through radiation for my right side (15 out of 30). It doesn’t hurt yet (thank goodness) but when I bend at the waist it feels like a sunburn.

I’m an expert on getting radiation treatment. How many people do you know who have gotten 89 radiation and/or proton treatments? I often read how people are lamenting their 20.

I thought I’d give you (my audience) an idea of what a radiation treatment is like since most (including me before cancer) don’t know what a radiation treatment is like.

By the way you can also read my husband’s analytical approach to radiation in the section under “a second opinion.”

My radiation on the right this time takes about 15 minutes total. The receptionist checks me in, and they give me a robe when I come in for my appt. I take off my top and leave on skirt or jeans. At no time do I feel very embarrassed (the two excellent techs who line me up on the table are women. Hi Jordan and Taryn!) . When they treated my left side in 2017 I had to hold my breath to protect my heart for part of the treatment.

Normally I lie on the table, arms above head, and turn my head to the left away from the radiation and the techs leave the room to start machine. Every other day they put a heavy pad on my chest to increase the radiation in that area. (a bolus). A few days before actual treatment, through a “sim” (short for simulation), the techs have marked my skin with markers and taken photos to know how to line up the beams. When I got proton treatment, the techs marked my skin with small tattoos to line up that beam (fairly painless—a little sting in about 6 areas).

Of course the physicists and docs and dosemetrists have drawn up the best plan to cover the area with photons.

After a few minutes we’re done! No it didn’t hurt and it won’t hurt til about end of 3rd-4th week, it depends on how sensitive the patient’s skin is.

I used aquaphor/radiagaard for regular radiation and silverdene for the bad burns with protons. I needed pain drugs with protons.

Proton treatment was more difficult. I had that when my cancer came back on my skin August -October 2019. They hit my skin hard and by the 38th treatment my underarms were oozing and newly grafted back skin over my heart was dark red/blackish. I have some serious scar tissue from those burns, which limits my range of motion., I’m hoping to improve that with physical therapy.

Feeling a bit overwhelmed…I think more cancer has shown up. When I have time and know more, I’ll catch you later!

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Judge Not Lest Ye Be Judged

I’ve been thinking about one of Dan’s former patients from maybe 10 years ago. She was addicted to cocaine and had a terminal prognosis. In my judgey, precancer days I thought, “why is she doing this to herself?” In her search for more drugs, she would end up in jail and all kinds of awful places. Now I understand her a bit better. She died fairly quickly but I hope she died happy.

I read recently that “There is a holiness to exhaustion” by poet Carrie Fountain. I expect cocaine user was exhausted. Everyday I have to tell myself don’t succumb to over drinking to stop the mental anguish of waiting or taking too many drugs to stop the chronic pain in my shoulder although it’s tempting. When I go to yoga it hurts, when I put on my coat it hurts, when I carry anything in my left hand it hurts, when I turn over in bed it hurts, and I can’t even begin to lift my darling grandkids.

February 9 was my three year anniversary with breast cancer. 45+ chemos (7 A&C and lots of other drugs) 6 months oral chemo, 71 radiations/proton on left side, 30 scheduled for the right side to get lymph nodes which are on opposite side of previously treated skin. I have had 3 surgeries including a mastectomy which did not stop cancer from coming back third time on that side so don’t fall for that myth. Practically all my skin in breast area was removed as my back muscle was grafted over my heart.

7 pet scans, numerous ultrasounds, mris and mammograms., Many lymphadema appts and massages. Endrinology appts bc thyroid got out of whack so now I have hashimotos. Slight Neuropathy. Two trips to vandy, two trips to Sarah Cannon to get second opinions. I have been vigilant.

All in three years. And I have not forgotten all of your kindnesses you’ve shown me as I made this journey!

This week I heard that Dan’s co-worker had a recurrence of breast cancer. She was treated 17 years ago for hormone breast cancer and now it’s come back as triple negative. That’s why we can’t breathe a sigh of relief with this disease.

I’m on my second week of radiation which won’t be as bad as proton, but not as “easy” as first time. I have 4 more weeks to go.

Don’t think my blood levels back to normal, sitting a great deal this winter but do talk myself into going for walks plus I try to attend at least 2-3 yoga classes a week and one strength building class at cancer support community. I’m maintaining my weight around 126 although that’s still a bit high for me. When chemo stops, wt starts rolling off bc of no more steroids.

Can’t wait to go back to a normal life when we can travel and maybe I won’t be too tired to run. We were going to Las Vegas in March but we planned trip in October before I knew my cancer had moved to right lymphs. Grateful Dan and I have taken these short vacations when we thought I was done. Or when we visited Opryland at Christmas for my Sarah Cannon visit, And thankfully I could go to Charleston with girlfriends bc it was between treatments. So I am thankful for opportunities like that.

And I continue to write. Dan continues to write, so despite tough times, we keep on.

Hanging Fire

At 5 AM, I awoke thinking of title term as I wrote an email to a friend. It means: “As an idiom, to hangfire(or hang fire) means to delay an action or to be delayed in an accomplishment or action; to come to no distinct result; to fail to achieve an expected result.”

It’s actually a military term about a weapon failing to fire or something like that.

But when the term popped into my sleepy head, I also thought of Audre Lorde’s poem “hanging fire” that I used to teach at UT. I liked it—look it up if interested. It’s about all the things that a 14 yr old girl wants to accomplish, but she’s stuck at home & “momma’s in her bedroom with her door closed.”

That’s what this recent process has felt like to me—waiting for this process to be completed. It’s my birthday and all my counts are in the toilet as my doc said yesterday. I’m the most anemic I’ve ever been (in 3 years), my absolute neutrophils are at .3 which is terrible, I have a UTI and a cough because my white cell count so low.

But it’s also been a fun week with a trip to Charleston with my friends. We stayed at Wild Dunes at Isle of Palms where I’ve never been. In retrospect I’m not sure how I got off the couch and walked on the beach. But good food and author events spurred me on. My friends have been my lifelines for the past three years. We even sang “White Coral Bells” in a round some evenings which reminded me of childhood. Do you remember? “White coral bells upon a slender stalk,/ lilies of the valley deck my garden walk.”

My 3 yr anniversary of my diagnosis is coming up on Feb. 9. So just wanted to update y’all. Radiation starts next Tuesday (28th) of right side if they can get my white counts up with neupogene shot (yesterday and mwf of next week). My radiation doc said he had discussed my case all over town, and they decided radiation best option. If they tried surgery they might have to dig around to find cancerous lymphs and they may not even get them and one is particularly close to chest wall. So six weeks of radiation /big field, but my right side has never gotten radiation so it should tolerate okay. When I’m done, I will have had 110? rad. treatments. My doc also said he’s never seen anyone go through as much as I have and remain in fairly good spirits and shape. It is getting old, however.

So that’s all for now. When you don’t want to party on your birthday, you know you’re tired. Will sit on couch today bundled up and maybe watch “zombieland 2” (Comedy and horror my fav. genre these days). I suppose I feel like a zombie some days :). But don’t feel too sorry for me; I’ve been partying all week!

(And I’m seriously, seriously tired. So if I’m grouchy or uncommunicative or turn you down for something that’s why.)

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Serial Killer

When I Have Fears by John Keats

“When I have fears that I may cease to be

Before my pen has gleaned my teeming brain,

Before high-pilèd books, in charactery,

Hold like rich garners the full ripened grain;

When I behold, upon the night’s starred face,

Huge cloudy symbols of a high romance,

And think that I may never live to trace

Their shadows with the magic hand of chance.”

Nearly every night recently I’ve had dreams of some bad guy waiting outside to kill me. I could attribute it to all the scary shows my husband and I watch—real life is too scary for me so we like tales of the supernatural, especially if the good wins over the bad. But I’ve watched these shows forever and never had bad dreams. In this dream, a bunch of us were trapped in a glass-filled house and I kept urging people to turn off the lights so he couldn’t see in. I could see him in his white hat crouched in the yard. I tried every strategy I could think of to get out the door and run, even though it was cold and rainy. But then I remembered my dog with me. How could I escape with her, with me being too weak from mastectomy to carry her for long? So I decided to stay. The next thing I knew the serial killer was at the door and had made a deal in cash with someone in the house to come in so he could get close to me. And I woke up at 4:20.

So many metaphors here about my relentless disease.

And here’s the latest news—my oncologist of three years is leaving. . Brightsidedness? I have other good options, but this hospital and service have been a type of refuge for me. And I liked my young doctor. Maybe I was too much for her—with all my questions of “can you cure me?” I also love the infusion nurses, the staff who make my appts, my masseuse Dena, healing touch with Lynn, the physician assistants, and my nurse navigator Susan Rutherford. I can probably keep same radiologist, though, but must find best oncologist and that might mean another center.

A new book has come out called “The Undying” by Ann Boyer with my type of cancer. I read a NYT review this weekend. Compared to my experience she’s a wimp bc she went through process once and was cured. She laments getting the a&c that could kill her and I’ve gotten it twice and I’m 20 years older. But I identify with her in many ways—her desire to dress up for chemo, to wear a wig so she doesn’t look pitiful, her desire to understand it all. She writes “The world is blood pink with respectability politics…as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist”... And “I had believed it was no longer very deadly and that its treatment had been made easy,” and that “your life gets a little interrupted but then you get through.” Truth!

A few months ago I was with some older people and I commented, “I just want to see my grandkids grow up.” This mid-eighties person said to me “I just want to see my great grandkids grow up.” I was shocked but shouldn’t have been. We all want to live. But I was shocked mostly that this person could not register that I was much younger. I was shaking my head inwardly at this person’s lack of self-awareness.

The things people say! I was at yoga at cancer support community and not wearing my wig. (I do have some short curly hair now.) Not knowing my cancer had returned for the third time, an acquaintance said, “you look good!” First thing out of her mouth. She has had cancer and apologized and said “ppl often say that to me, and I know it’s wrong, but you look good. I know!” I understood her response but maybe it’s better to say, “how are you?” first.

Speaking of things NOT to say:

*don’t say “AT LEAST…” I’ve been tempted myself to say it but it will probably make me angry if you say it to me. What I hear is “at least you’re not dead yet” (no one actually says but…) “At least you have options.” “At least you can be happy because of xyz.” Believe me I think of all the positives of my situation, but I’m tempted to say “At least you haven’t gone through extreme cancer treatments for 3 years and have your mom die in the process. If you do, talk to me then, and see if ‘at least’ makes you feel better.”

*Don’t launch into a long detail about your cancer experience. Don’t make it all about you.

*and especially don’t pretend to support me seeking medical advice for yourself. It’s very clear when you do that. There’s a time and a place for comparing notes, but not when I’m lamenting.

*Don’t be a medical expert. I have heard or read so much and get tired of bad advice. I liked the way my endrocinologist approached it—first he asked questions and then humbly suggested I do a search on breast cancer and fasting. He jokingly said,”I know just enough to be dangerous.” If you must offer advice, an easy way to do it politely is to say “you probably know this, but I’m wondering…”

*Don’t expect me to be positive or remind me to be positive. See above quote by Boyer. …”as if anyone who dies from breast cancer has died of a bad attitude…”

DO

*Ask me how I am (this terminal business is scary).

*if you get inspired, email or send a note or whatever. A kind friend brought a casserole last night without plaguing me with lots of questions. I get overwhelmed making decisions.

*Remember I get tired by 8 at night so make events early. And don’t be offended if I don’t accept your invitation.

Just some thoughts at 5:46 this morning. Chemo supposedly tomorrow if my platelets have recovered. So wish me luck as I seek a new doc by the end of December.

By the way, Keats died at 26 of tb. Now we think, what a senseless death because we have cures. Maybe someday we can say the same about cancer.

Hoping for Holiday Miracle

At endrincologist this morning. Cancer treatment messes with thyroid. I made this appt months and months ago—apparently nearly everyone in the world has thyroid problems. So I’ll be sitting here for a while.

I learned something new with this most recent chemo on Thursday. Chemos can induce something called radiation recall. Although my last proton treatment was October 3, my “sunburn” has come back, and I have tightness in my skin where I was treated. You can see a big color block on my skin where the protons hit. The reason for this is that the proton treated cells are damaged, and they become inflamed again.

So what’s the miracle I’m hoping for? I will get about 4 doses of this chemo, and then they’ll scan again. I really, really hope and pray that this chemo will get the little residual disease in my lymphs. If it does, maybe I’ll then get radiation. And I’m hoping to be done by the holidays. For 3 years I’ve dealt with cancer during holiday season and am ready to be DONE. (Not done, done, but at the NED stage.)

Dan doesn’t understand why my disease has moved from clean left side to the right lymphs. Last night he speculated that the chemo (42 of them!) has so damaged my vascular system that the lymphs didn’t get enough of last chemo. It’s disturbing when oncologists say they don’t understand why your disease is acting the way it is.

This uncertainty is causing me all kinds of anxiety and most recently weird dreams. Friday night after chemo, I dreamt about thanksgivings of previous years and my current state. While I was teaching, on thanksgiving Wednesdays  I always picked up last ditch research papers with anywhere from 20-40 guests arriving for dinner on Thursday. In the dream, I couldn’t find my class roster, couldn’t remember where we met, and I’d already missed my 9:30 class to pick up papers. I thought about calling dept. to tell them my cancer had returned for 4th time and could they help me? Crazy!

Can’t do anything about this. I have to let go and take one day at a time and envision that little bit of disease being wiped out by chemo.

I’m ready for a miracle that is within the realm of possibility. Who’s with me? And thank you for your prayers!

PS I’m going to brag on Dan for a sec. At endrocinology appt., they had to stick me three times to get a good vein. I told Dan & said “I’m probably dehydrated from Thursday chemo”— and he suggested that maybe my right lymphs did not get the chemo this summer bc my veins are so damaged from previous 42 chemos, and bc I stayed dehydrated with summer heat and protons, maybe lymphs did not get the a&c or carboplatin. So now I have even more reason to hydrate before & after chemo to make sure drug gets to veins. I’m encouraged by this idea. He had been perplexed as to why my cancer has now moved to right lymphs although left side now clean. Also endocrinologist mentioned the studies that suggest intermittent fasting (IF) before chemo increases efficacy. So I have 2 new strategies to get rid of this residual disease. Grateful!

Gratitude

This is the first time to use my phone to type a blog. I’m in chemo chair today and getting gemzar and carboplatin.

Why am I grateful? I had a million decisions to make about clinical trials and suddenly those decisions were off the table. Poof. My fallback plan was to get standard of care with two regular drugs. I’ll get treated two weeks in a row and one week off.

How did all this happen? I had been told about a low-expression her2 clinical trial with Dr. Brig so I went to see him and they started paperwork but my her2 registered as less than 10% so he wanted to retest sample. That would have required 2 weeks delay for treatment to retest and to meet other criteria.

Also Dr. Patel got me an appt. at Sarah Cannon with Dr. Hamilton head of clinical trials on Wednesday at 10:45. Patel has been amazing the past few weeks, acting quickly, trying to find the best care for me. She’s getting married this week (twice! A Hindu and Catholic wedding!) and even called me on her day off to update me on info that might have helped me get into a trial.

To combine fun and business on Tuesday we stayed at the Gaylord Opryland hotel for $25. after we used my Marriott points! Do you know how much those rooms are? 400! I nearly fainted. But good times seeing lights, eating a dinner in the cascades area of hotel, walked around place, watched a goofy movie when we went to bed.

Once I arrived at Sarah Cannon, I found I was going to see Denise Yardley who is head of later clinical trials esp. for triple negative. My blood pressure began going through roof (138/78 vs 104/62) anxious about how my life depended upon the right decision at this point. I gotta admit I did have one breakdown and tears which calmed me down later though. Yardley thought she had the perfect trial for me but after 2.5 hours of talking and checking on criteria, the research nurse came in to tell me I didn’t have measure-able disease for a clinical trial. It was too small. .8 instead of 1.5 cm. Not a bad problem to have (small disease) but was hoping for clinical trial. Found out one clincal trial for triple negative combines a probiotic with new drug. But my endocrinologist mentioned one doc at MD Anderson does not like probiotics for cancer patients.

I called Dr. Brig’s office on way home and said Sarah Cannon had told me ALL clincal trials require a certain amount of disease so I asked Christie in charge of clinical trials what they required. 1 cm. So bye-bye to that trial.

I still struggled wondering if we were making right decisions with chemo again and Darrell the nurse practitioner said he had called Brig and he agreed I couldn’t do his trial.

Now here’s where it gets weird. On my way to chemo, on some random station, the lyrics of the song playing were about “the cancer’s all gone as if was never there” (because of God).

I’ll take it as a sign that we’re doing the right thing. Grateful for that song.

Walking Between Raindrops

After my PET scan on Thursday last week, my friend Nancy offered to walk with me “between raindrops.” That image captured my imagination because I conjured up a picture of super Nancy walking between raindrops just to be with me. My friends are like that. I told her she reminded me of Gabriel Garcia Marquez (See “A Very Old Man with Enormous Wings”) who often uses magical realism to make his points. So I’m grateful for my wonderful friends and family. And I’d ask that you walk between raindrops with me during this next phase of the journey.

Tuesday’s biopsy showed I have 2 visible 1 cm tumors in two right nodes. Biopsy was tough. She had to go deep into axillary area and lots of nerves and muscles there. I had taken drugs, so it could have been worse. Afterwards I was shaking, and doc said relax, but therapist told me yesterday that I should allow myself to shake. It’s your body’s way of getting rid of cortisol. So lesson here, If you’re shaking due to trauma, run, move, get angry, shout or whatever. They were wrong to tell us to be stoic. Maybe that’s been my problem all along. Too many years of being stoic while cortisol affected adrenals.( Dan also held my hand as I shook so that was comforting.)

But back to issue at hand, more treatment. I would ask for prayers for wisdom to know what to do. Dr. Patel called last night and said she’s going to present my case to the tumor board on Friday, and we will go from there. I said to her, “Can you cure me of this?” She paused and said, “I’ll have to think about that.”

My weekend had a few wonderful miracles—discovering that my Dining for Women group on Monday is supporting a project in a country (Swaziland) where my son and his wife also financially support a young woman. Dining for women’s program on Monday is to help AIDS orphans. The other wonderful news is that an anonymous donor is giving (buying) my church a building, essentially. We’ve been in a rented space for 15 years. It was a very special evening—extra special because my amazing daughter and grandson were there. I was even beginning to believe in miracles. I went for prayer afterwards and sweet friends prayed with me. I never do that kind of thing because I just don’t. But I’ve found I have had to humble myself in all kinds of ways on this journey.

That is all. I’ll update as I know more. Beautiful morning.

Please PET Me

I could have entitled this the scariest Halloween ever. Sigh. Of course my cancer never behaves the way it should. I remember the words of Dr. Denise Yardley at Sarah Cannon who said “Your cancer always needs some adult supervision in the room.” I’m trying to be the adult who keeps it under tight reins.

This blog is about the results of the PET scan on Halloween, but results unofficial without a biopsy, so don’t freak out because I’m trying not to freak out. But honestly I’m a bit scared. Scared of the way my tumor moves, of losing my hair all over again, being exhausted, to name a few. Triple negative breast cancer is scary and unpredictable.

My scan showed that two lymph nodes on my RIGHT side lit up. One is especially “Hot.” If you don’t know how a PET scan works, here’s a quick description: Techs inject you with a sugar and slightly radioactive dye that goes to any quickly growing cells. Cancer cells gobble up sugar. (And no don’t go on a rant about sugar. It’s more complex than that.} Then the area lights up when person is scanned. I’ve had about 4 of these. The more proliferation of cells, the brighter the hot area. So this one is at 5.6 which is pretty indicative of something growing or glowing (haha). A slightly abnormal reading is 1-3. According to my husband who saw the films, one doc in room had a deer in headlights look when he saw activity level.

The good news: cancer is totally gone on left side where it originated! Yay! Protons burned up those microscopic suckers. But Dan said he’s never seen a cancer move from one side of the lymphs to the other. It’s like a horror movie where the cancer is sentient and moves away from treatment to a safer area,.

Realistically, it could be several things: New cancer, same cancer which was in my vascular system. or a remote chance of lymphoma (curable), Or best case, it could be nothing, but not likely. Biopsy Tues. morning Nov. 5. Election day.

That’s where I am. I love Pet Scans because they let me know where cancer going. Don’t care about the minor radiation. Probably more radiation treatment in future and possibly a drug like Ibrance which is used for metastatic cancer. I’m so lucky that medicare covers all these scans. Some people die of cancer because their insurance doesn’t cover scans. Dumb. Medicare for all!

It’s only been about 6 weeks since my last chemo and a month since protons stopped and it’s already on the move. What if my doc had waited to scan me? What if, what if, what if? I still have options. And now I’m going to yoga.

Dan's story

And now for something completely different as they used to say on Monty Python. My brilliant husband composed an elaborate allegory about my breast cancer experience. Enjoy!

My Wife’s Breast Cancer

By Daniel Scaperoth

 For a long time there was peace and harmony in the country of Harobed. It was a beautiful country noted for it’s excellent education system, number of poet laureates and outstanding child care programs. The citizens were hard working and productive with hope for a bright future. But one day, on the East Side of town, there was a commotion in a popular local establishment. A heated argument had escalated into violence resulting in a lot of damage to the furniture and a front window. The Police were called in to investigate and Sargent Handle happened to be on duty. “I suspect a gang may be forming here,” she reported back to Central Intelligence. This was concerning since the citizens prided themselves on their well ordered society and their healthy respect for the law. They were not above having a good time and getting a little wild, but never when it interfered with the rights of others. It was unusual to have a public disturbance of this magnitude.

The incident was reported up the chain of command. A Security Council was organized and called to order. Not wanting to overreact, they decided to send in a probe to get some accurate data and find out what was going on. This was promptly approved and the probe sent in the next day. Sure enough, the Sargent was right to be concerned. This was much worse than a gang. They were terrorists.

The good citizens of Harobed and Central Intelligence were stunned by the revelation that their peaceful community had been invaded in this way. They had kept up good boarder security and maintained a strong, well trained Police department that never suspected any untoward activity.

The Security Council had a file on these terrorists and they knew what needed to be done. In order to make sure the terrorists did not scatter and elude capture, a series of preemptive attacks were planned. The first would bring down communications and the next would subtly poison the local food supply to make them weaker and more likely to surrender. With this plan in place, the Police first did a broad search of the East and West side including the North and South as well, concluding the outlaws were only in the one location. After eight weeks of quietly attacking with EM bursts, power outings and slow poison, the SWAT team was called in. The terrorists were weakened and seemingly caught by surprise. They were quickly rounded up and sent to detention.

The preemptive attacks were somewhat disruptive and certainly annoying, but the good citizens of Harobed understood their importance and tolerated the inconvenience without complaint.

Just to make sure all was secure, a Rifle Squad was assigned the task of going door to door on the East Side shooting anyone found to be a terrorist. They would be equipped with the latest in laser guided weapons. This search and destroy mission went on for six weeks and was very effective but disruptive for the locals. There were even a few civilian injuries from stray bullets. A public outcry to this intrusion was dealt with swiftly by the Security Council and smoothed over with the help of Sargent Handle.

Recovered in the raid were enough guns and ammunition to bring down the entire city. Interrogation revealed these terrorists were an aggressive, especially hostile group intent on global domination. There was no indication of their origins. Their sentence for treason, disorderly conduct, resisting arrest, illegal possession of firearms and attempted terrorism was death. Sentence was carried out immediately. There appeared to be no survivors but the suppression techniques were continued for several more weeks just in case someone was missed.

Life proceeded to get back to normal in Harobed. There was celebration and a global sigh of relief. The security forces went back to routine surveillance and the department heads took a well deserved vacation. Sargent Handle went on routine patrol and was completely satisfied with what she saw...for about six months.

“Not again,” she thought as she observed more commotion in the building right next door to the one she reported on earlier in the year. “This looks familiar and very suspicious, I’d better investigate.” Another probe was requested and approved through the Council. The probe results were the same as last time – more terrorists that seemed to come from the same group. “Where the heck did these guys come from and how did they survive all this time?” She went back and reviewed the arrest records and termination papers. All was in order. We must have missed something last time but she couldn’t see how. All the i’s were dotted and the t’s crossed. There was a general atmosphere of frustration in the police department.

The Security Council was called to order again. Their task was to decide what to do next to ensure all terrorists were permanently eliminated. Should they call in the SWAT team or maybe the Rifle Squad again. Someone mentioned the option of engaging the services of a sharp shooter to pick them off one by one with less chance of disturbing the neighbors? They wanted to do something different and less disruptive to society, so the sharp shooter plan was approved by committee vote. There was risk that a sharp shooter wouldn’t always have a clear shot, so a poison was also introduced into the local water supply and they called in some reinforcements and shut down communications. The sharp shooters were set in place across the street from the terrorists where they could see their targets more clearly.

The terrorists were experienced and not phased by any of this. They kept out of sight and broke through the communication barriers. They didn’t consume the poison as if they knew it was there. They were in full recruitment and training mode. Sargent Handle saw the escalation in activity and concluded that the sharp shooters were not getting a clear shot and knew the SWAT team was not going to cut it this time. She called for the National Guard.

The Council approved the National Guard request. The Guard was a no nonsense, “get the job done at all costs” group with clear instructions to completely clean out the area. All the citizens on the East Side would be relocated out of the country and any terrorists found would be interrogated and then shot. It was a long difficult “process” that would leave permanent scars on the countryside. They wasted no time in getting down to business.

The “process” involved two steps, the first being the removal of all personnel (including terrorists) and all building structures leaving only their foundations. The second step would be to completely Terra-form the area with lawn and pavement. It would be possible to rebuild later. Part of the North and West sides would be affected by the process.

This was a drastic step for the citizens of the East Side and approval for the process did not go with out some dissent on their part. There were some protests and heated discussions in town hall meetings. A few rocks were thrown but ultimately everyone understood that there was no better way to ensure complete elimination of the threat to civic and national security.

Most of the work was done after dark and when complete, the East Side was unrecognizable but not unpleasant with the new lawn in place. All terrorists had been removed (and there were several found.) A thorough search afterward showed no signs of survivors.

The Security Council met to discuss ways to keep terrorists out of other parts of the country. They came up with a higher security monitoring system and a new toxin that would get into the trenches so any terrorist hiding out could hopefully not detect or escape it. This was approved and set in place with minimal impact on civilian life in Harobed.

Several weeks later, Sargent Handle was maintaining the new East Side lawn when she noticed a single shadowy figure in a red sweatshirt trying to make their way out of the area heading South. She went through channels and called for back up. Within hours the SWAT team responded. The suspect was quickly apprehended and identified as a terrorist. She was found to be part of the original group thought to be extinct. In spite of intense interrogation, she did not give up any information regarding the possibility that more like her may still be alive. This created panic among the administration and many a disparaging word was uttered.

“Shit! What do we do now? Could there possibly be more? This is getting ridiculous.”

The Security Council met again in emergency session. This was well attended by Generals Paddle, Carl, Wilkins, Garvey, Abraham and Chalk. All well respected in the field of terrorism control recruited from all over Harobed. They discussed the evidence that the terrorist cell could be scattered in the underground and that the original multifaceted attack was the most effective so far. They should start with this first. The citizens of Harobed would be affected in all corners of the country and a consensuses from both the Security Council and Central Intelligence would be needed. A heated discussion ensued and an aggressive plan emerged. They would use more of the original food supply poison while concurrently bringing down communications. In addition, this would be followed by a small controlled nuclear blast centered on what used to be the East Side town square. This was a desperate measure in desperate times. Nothing would survive the blast including the newly planted lawn. Part of the South Side would be in the blast zone and some farming and a food processing plant would be affected. There would be no rebuilding the town after this attack, but the cost was felt to be necessary. After much discussion it was unanimously approved.

The poison and communication block went off with out a hitch and there was much enthusiasm among the citizens and administration regarding the success of the plan so far. The nuclear blast was another thing. There were lingering concerns. Such a destructive force used after the damage done by the National Guard, Rifle Squad and the poison had never been attempted by the generals in the past, and there was no one who had heard of another country attempting it. But alternative options were reviewed and eliminated, so they pressed on. Central Intelligence was tasked with entering the final code to arm the weapon and General Wilkins pushed the button. A series of blasts would be produced over several weeks decimating the countryside.

Nothing was left, including the terrorists.

There was much celebration over the victory and mourning over the losses. The East side was reseeded with a new lawn and memorials build in honor of those that were lost or displaced. The South Side rebuilt. The rest of Harobed proceeded to get back to normal. Central Intelligence occupied itself with business not involving terrorism. The security forces went back to routine surveillance and the generals and department heads took well deserved vacations. Sargent Handle went on routine patrol and was completely satisfied with what she saw, but ever vigilant. She would never forget the ordeal.

Good News!

“The true mystery is that because we are finite humans with limited understanding, we really want a God beyond our understanding.” quote by me (but I think I’ve read something similar somewhere but as a good researcher I can’t find source!)

My biopsy on Monday on rib area came back negative, so cancer still limited to my skin! Yay! That means my cancer is not in deep tissue, and they won’t have to boost proton doses to damage my ribs.

I met with oncologist yesterday, and she’s going to start me on chemo drug carboplatin next Wednesday to work as accelerant with the proton therapy. Before I got results of the biopsy (I heard this morning) I was feeling kind of overwhelmed as Dr. Patel and I talked. I felt like my life was getting out of control. I usually don’t feel despondent but it’s been a long 2+ years with Dan and my health issues. So thank God for good news!

I will be getting about 6 weeks of proton therapy along with the carboplatin. And that is all for today.