Killer Boobs

Literally, they’ve tried to kill me twice.  Once in 1998, which was just a warning shot and now, almost twenty years later to the day August 2017.  So they’re coming off.  February 22.

Figuratively, because I’m doing reconstruction.  My argument with my surgeon is that  the best decision for me is a bilateral mastectomy and taking a perfectly healthy right breast along with the triple negative infested left one.  Sorry GF, you’re a buzz-kill.   Argument you may ask?  Yes, my first appointment with her was not convincing enough that I wouldn’t have to worry about this again (thinly veiled as GO THROUGH THIS AGAIN).  She stated my chances of recurrence in the other breast is only about 4% (please note caveat regarding testing negative for BRCA 1 and 2).  We left it as a topic for the next appointment.  Again, the urge to go ONLINE to research questions not yet conjured up in my brain surfaced about the need to go through something so drastic.  Not to mention SYMMETRY in the reconstruction.  If one side is going to look 16, the other side shouldn’t look 62.

Second appointment with breast surgeon and I’m met in the room by her medical assistant.  She asked me if I was still going in the direction of a bilateral and I said yes, but that the doctor was not 100% convinced.  It seems as if I’m the only one thinking I’m at risk for EVERYTHING.   She said I needed to do what was best for me and that most doctors have not walked in the shoes of a cancer patient.  She informed me she was going to plan/schedule for a bilateral unless otherwise directed.  SWEET!  That same appointment I told the surgeon I was still opting for both and she finally admits “all of my patients who opt for a bilateral when not medically necessary  have NEVER REGRETTED IT.”  This was my third appointment.  It would’ve been nice to have heard that on the first.  So goes the road of a cancer patient.

I just recently went through my medical file and found that I had forgotten I’ve had two negative biopsies on the right (healthy) breast for cysts.  Now I’m even more convinced that I’m making the right decision.  It didn’t come easy. The fact that I am eliminating body parts for cancer to recur, my cancer is more apt to come back SOMEWHERE ELSE than in a breast (too depressing to go into right now).  AND this is where I think out loud ……..what am I doing getting reconstructed boobs at 62, boobs are a pain in the ass, bras suck most of the time, they’ll be numb anyway, will I really not need mammograms anymore(?), is there any chance it could still be in the muscle/chest wall(?), should I leave the right one so cancer can go there instead of SOMEWHERE ELSE(?)…ARGGGGGGG.  For a few days I struggled with the whole “Flat is Fabulous” movement but I didn’t want to look down and see disfigurement yet tattooing my chest to cover ungodly looking scars was not me. There were also few options for women’s clothing that isn’t made to accommodate “the girls” except in the men’s department.  And what about my husband who should be elevated to Sainthood after all this?  Hmmmm, no thanks.

So buhbye killer boobs.  October 21, 1955- February 22, 2018      RIP

http://www.flatandfabulous.org/    – this website seems outdated but this is the kind of information that when you want to search for answers (in the middle of the night) you find these linked from something else. Articles and information seem to stop around 2015

 

Cannabis

Happy New Year!  As of today Californians can now enjoy purchasing cannabis for recreational use (Prop 64, 2016) but you will have a hard time purchasing it.  Local jurisdictions as they have in Fresno (4-3 against) prevents distribution in the Central Valley – the nearest place to purchase pot for enjoyment right now is a converted lumber yard/storefront turning into a dispensary (or the usual way through your “best” friend who supplies it to you).  That’s about 60 miles from here.  Why am I concerned?  I’m not really.  I think it’s funny that in 1996 the most regulated state in the union approved the use of medical marijuana and 21 YEARS LATER for recreational use, except at the mercy of local jurisdictions.  Now that tax consequences could be enormous (45%?) and an ounce going for $250-300, city councils will sure be sorting out the details of providing this to the general public in the form of dispensaries and many more venues for consumption (A Pot Limo, winery, pot tastings?).  I think I’ll stop there because I know just enough to be dangerous (read the Fresno Bee this morning!)

I am getting to my point. Cannabis can be very helpful in the control of nausea, which is a severe side effect of chemotherapy.  The first cycle of AC chemotherapy that I got for 8 weeks was a bitch as noted earlier.  I was taking steroids, Ativan and Compazine for it, but honestly I couldn’t tell the difference and I was afraid how I’d feel if I didn’t take it.  But a friend who attends school in San Francisco offered up purchasing some edibles for me when I was describing the nausea I had..  At some point you’ll try anything (and some of you won’t be surprised to read that).  Being the great friend that she is (and with her medical MJ card!) she went to a storefront and perused the menu.  What she came back with astounded me.  Not only is it more that just brownies and buds, it’s a full range of choices to make….Cheeba Chews, Jolly Ranchers, Cannabis chocolate that looks like Ghirardelli squares, and a cool vape pen that plugs into a USB outlet to charge.  And that was just what she purchased for me.      https://weedmaps.com/

The problem is how do you gauge the dosage of the cannabis your ingesting?  Since my only edible experience was limited to brownies in the 70’s  (I did say edibles), I had no idea how the chews or the jolly rancher candy would effect me.  The hard candy was wrapped in cellophane and said “Sugar Punch Edibles/ 50 mg) and burned my tongue so much I had to take it out and didn’t know how much I had ingested.  The Cheeba chew box label states “20 mg Cannabidiol/50 mg THC” on the package and has hash marks on the side that convert the serving into fourths. Don’t know about you but I went into the social work profession so I could avoid doing math.  Here we go….5 mg of Cannabidiol, 12.5 mg THC, 170 pound woman with a BMI of 29 and no mandatory drug test in retirement.  Hmmmmmm….. Sounds good, I think I’ll try that.  My dear friend did tell me the dispenser(er) told her that edibles take approximately an hour to feel the effects.  Unfortunately, I had forgotten that advice before I ingested that quarter piece an hour and a half before a meeting I was supposed to attend.  Needless to say, getting to the meeting early and having some fresh air and a walk around my car helped.  I will admit it felt like I was in the 8th grade coming home stoned from my friends house whose sibling grew his own.  Enough sharing.

The electronic pen intrigued me yet I was still apprehensive about the amount and truly wanted some relief for middle of the night nausea.  But there were two cartridges and I wasn’t sure which one was more effective for nausea and sleeping.  They were marked Hybrid GS Cookies and Sativa Sour Diesel.  Here’s what I found copied from leafly.com:

GSC, formerly known as Girl Scout Cookies, is an OG Kush and Durban Poison hybrid cross whose reputation grew too large to stay within the borders of its California homeland. With a sweet and earthy aroma, GSC launches you to euphoria’s top floor where full-body relaxation meets a time-bending cerebral space. A little goes a long way with this hybrid, whose THC heights have won GSC numerous Cannabis Cup awards. Patients needing a strong dose of relief, however, may look to GSC for severe pain, nausea, and appetite loss.

Sour Diesel, sometimes called Sour D, is an invigorating sativa-dominant strain named after its pungent, diesel-like aroma. This fast-acting strain delivers energizing, dreamy cerebral effects that have pushed Sour Diesel to its legendary status. Stress, pain, and depression fade away in long-lasting relief that makes Sour Diesel a top choice among medical patients. This strain took root in the early 90’s, and it is believed to have descended from Chemdawg 91 and Super Skunk.

I chose GSC because of the full-body relaxation effect (and after I tried it once it worked pretty fast).   I used my “Calm” app with a 12 minute relaxation session and it did the trick.  Yet I wondered about others who may want to go this route for comfort from pain and nausea and how dispensaries advise cancer patients with dosage based on their personal characteristics and cannabis choices?  Prescription medication takes into account tons of research and FDA approval for dosage and efficacy and I’m not sure from my limited exposure, this is the case with medical/recreational marijuana use.  It seems as dispensaries become more of a “budding” industry (I know gag, I had to use it) there may be a case for “professionalization” with science/research with regards to dosing..  Food for thought and maybe a great new curriculum and certification for employment in this industry.

AND some good news!  My hair is growing back, slowly but surely….

 

 

 

TN v. ER Breast Cancer

I know from the title, medical acronyms are worse than the ones I used in education.  Research journals are different as they define the acronym once at the first point of use so better write it down as it may not show up again until three paragraphs later.

TNBC = Triple Negative Breast Cancer – my official diagnosis August 3, 2017.  I believe that is that my new cancer anniversary?  I’ll have to remember to send myself flowers on that day.  My previous anniversary date for ER = Estrogen Receptive Cancer was September 11, 1998.  Way easier to remember.  That all went to shit on August 3.

Quick lesson:  Estrogen Receptive cancer is just that.  The tumor after the biopsy is tested and the specimen tests positive for the fuel that makes most breast cancers grow: estrogen, progesterone and human epideral growth factor receptor 2 (HER 2).

Triple Negative is a high risk breast cancer that lacks the 3 receptors mentioned above thus the term triple negative.  That being said, targeted chemotherapy is more aggressive, relatively new in determining success rates and the after chemo/surgery protocols do not include 5-10 years of the estrogen-sucking meds that most women are on.  Interestingly enough, I was pretty happy when I heard the diagnoses as I thought it was less devastating and a better outcome than what I had before.  The 5 year meds come with pretty severe side effects but hindsight and now some research tells me I would’ve been better off with that diagnosis.  What a moron!

Researching TNBC is a bitch.  One article said the TNBC subtype did not appear in any peer-reviewed journals until 2006.  Analysis of data began in early 2014.  I made the mistake of going on websites, THEN traveling down BLOGs which led me to most of the women with TNBC (quick what is that?) having metastatic disease – cancer that has spread past the breast.  I mentioned this to my husband, as he saw me with my  nose in my iPad so I told him what I was reading.  He wasn’t too happy.  The problem is I don’t know what I don’t know and I’m not having much luck dispelling any of my fears or creating questions for my doctor.

When I was first diagnosed in 1998, Linda McCartney had just died from breast cancer that had metastasized to her liver.   I went on the internet and the first website link featured was a book titled “I Don’t Buy Green Bananas.”  (Don’t worry it took me a while too), but in that moment I laughed…..I scared myself so much that I didn’t go back and just looked at the publications my surgeon gave me.  At the time I was so numb from the news that the first thing I asked about was a second opinion. He said the type of cancer I had was “textbook” and “like having a hang nail.”  He thought it was a waste of time to get a second opinion because of the diagnoses – Stage 1, Ductal Carcinoma In Situ = DCIS, and the current treatment of lumpectomy and radiation were the standard (textbook) and I was in excellent hands with my oncologist Dr. P.   Yet my oncologist threw in 6 treatments of chemotherapy (one 20 minute infusion every other week of oral meds) because of my age (younger women tend to have more aggressive cancer) and wanted to cover all bases.  So textbook and hangnail made me feel so much better!   :{

Fast forward to 2017….TNBC and if the internet was scary then, the info I was reading quickly took me down the path of all the bad news first.  I found a good website (thanks to my cousin Dr. Houskamp) scholar.google.com which has a little more current research and articles on searches.  I think the problem here lies with me and also that there is not a lot of articles/publications yet on this topic.  YET, I tend to click the most negative, worst-case-scenarios for some reason.  Last night I was reading about two women, both in their late thirties (and Ashkenazi Jews who have a higher prevalence of BC) who were living with metastatic TNBC for over a decade.  Unfortunately their blogs ended when they died.  It was the most depressing thing leaving me scared and vulnerable to all the what ifs I was reading.  But like the news now, I refuse to watch national news for any length of time except to see that devastatingly handsome David Muir for a few minutes and then I’m on to something else.  Usually QVC scoping out “Sandy’s Favorite Things” to give at Christmas.   :}

One thing that seems to be consistent in my search is that TNBC is a relatively new of strain breast cancer (mentioned as the next new frontier in research) with up to 6 distinct subtypes, most of which do not have unique therapeutic treatment approaches.  From my perspective, the approach is to kill the MF’s with the “mother of all chemotherapies” and monitor for the next 3 years for recurrence.  It accounts for approximately 20% of the breast cancers and mentioned before is more common in younger, African American and Latino women.  Here’s your chance to laugh with me!  I think I’ll play the lottery tomorrow.

This morning I took my research list of questions to my treatment appointment.  After blood counts are taken I usually see my Dr. or a Physician Assistant.  I was glad when Dr. P came in.  I could sympathize with him as I unloaded all my newfound fears and somewhat faulty statements.  He told me to unwind what I just said go over what I have.  Here’s what I asked him to confirm:

  1.  TNBC has the greatest chance of recurrence in the first three years.    YES
  2.  If there is a chance of recurrence it will not be in the other breast, it will likely be at a distance site (this is called metastatic disease remember).  YES   *next blog will be about convincing my surgeon to do a bilateral mastectomy and remove my totally healthy right breast!)
  3. The most prominent site for recurrence is the Central Nervous System (comfortingly called that but it means the BRAIN).  NO – primary lungs and liver first, second place.  Don’t know if that makes me feel any better.
  4. How will I know what’s next in the form of aftercare to chase these other body parts.  Since I’m eliminating two of them on February 22, what clinical trials are going on for my particular case because I’m having a hard time finding anything online that relates to  62 year old white female, BRCA 1 and 2 negative with a cancer not normally found in people like me.  He said he would try to put me in touch with someone in his practice and look at a clinical trial.

As he’s talking me down the ledge, he said that we will not know how effective the chemotherapy treatment was until the surgeon gets “the breasts in the bucket” to test all the tissue.  The good news is that the August PET and MRI show no lymph node involvement as of yet.  All this will be answered shortly after surgery on February 22 when I get Barbie boobs.  I just hope all these chemicals infused in my bloodstream are killing these TNBC fuckers.

Aside note and maybe some fun:  Have you ever wondered how they name drugs?  For example one of my chemo drugs is called Cytoxan.  Really?  Why not name it something that sounds better  – like how did they come up with Lyrica for nerve pain, fibromyalgia.  FTLOG (For The Love of God)!!!!

CNN article:  How They Name Drugs

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12 Weeks of Taxol

Started 12 weekly treatments of a drug called Taxol. Chemocare.org has a great website that gives you more information than you want but probably should read to see how this shit works.
Taxol is classified as a “plant alkaloid,” a “taxane” and an “antimicrotubule agent.” (Taxotere)
Taxol belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant (catharanthus rosea). The taxanes are made from the bark of the Pacific Yew tree (taxus). This means they attack the cells during various phases of division.
I didn’t know that is why chemotherapy is given in cycles based on that cell division. Hmmmm. Vinca?(I think I planted that in my yard last spring). Pacific Yew Tree bark? Grown in the Northwest. I wonder if there are Pacific Yew tree farms growing these trees just for harvesting the bark for cancer treatment like crops of trees are grown for wood to make paper.

Probably TMI but its nice to know I’m getting organic chemotherapy….lol. and it’s not red, it doesn’t make me sick or tired except going to and from the infusion appointments and I’m able to get Christmas together for everyone.

7 more to go!

Cycle 1 Done

It feels like my brain is swimming in chemicals.  Almost as I rose from the chair in the infusion room, I felt fuzzy and uneasy.  Still had room for In n Out burger with the husband because I knew at the end of it I would be in my napping phase for the rest of the night (and I didn’t have to worry about him and dinner).   HINT:  chemo in the mid morning if you are done by 1ish you might feel good enough to eat and call it a day!

My hope is that I will not be as incapacitated as the first treatment which pancaked me for a good 6 days before I felt like I could make it through the day.  By the 9th day I felt good.  Played golf on day 13.  Then second treatment puts me back to square one.  Third was the hardest because I didn’t want to go into the room that Tuesday and have it done.  I knew what I was in for and it’s not something you want to do voluntarily.  And then I had to think about doing it one more time two weeks later.  Shitfest.

Since my hair was coming out in handfuls and I pulled out a quart size baggie full, I decided to buzz it off.  It felt great!  The texture had turned already, even though I still love blow drying my hair, it just didn’t have that shine.  Off it went. Baseball cap and Tasha my alter hair ego will be the order of the day or event.  But I miss my hair…..and eyelashes so makeup is a non-issue.

AC chemo is a bitch and I didn’t know it until I started reading other blogs.  That didn’t help.  All I know is that it’s called Red Devil for a reason.  It takes over and you cannot do anything about it.  I can see why people give up and don’t want to finish their treatment.  I never felt that way the first time.  But CMF was a piece of fucking cake compared to this.  It hit me in the core like a hand grenade in my chest going off slowly until I felt the tingly toes and fingers on the 5th day.  That’s when you know it’s in every part of your bloodstream.  Good times!  All you can do is wait and hope you wake up feeling halfway decent.  It’s done……

 

It’s going to be a long fall

Two down, two more for this go around. Then onto weekly Taxol for 12 weeks. Won’t be done until the first weeks of January.

Thank goodness for my friends who are fierce supporters of me. With all the crazy things going on in the world I need to be more in tune with the little things I take so for granted. Stuff happens in the world that can change your life in an instant. Anyone’s. No one is immune, which makes it all the more scary.

I’ve been thinking a lot about the timing of events and things that happen in my life. About a year ago, around this time, my husband and I decided to buy a house closer to our kids in case we ever had grandchildren and havemore options of things to do when I retired this past June (2017). Well, grand baby on the way was announced in January, we moved into the house in July, and the first week of August, I was informed of my cancer diagnosis but grand baby decided to come three weeks early! What a great diversion for us to have something so joyous to think about. The new cancer treatment protocols for triple negative meant chemotherapy first, then mastectomy so I knew I wouldn’t be incapacitated by a surgery in the first few weeks of Archer’s life. It was such a treat for me to be able to be there before any chemo or surgery in the first few weeks of his life to help out and bond with his new grammie. Timing was perfect!
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September 2017

Lacy and Mom_CCIn reality, my journey started in July.  I’ve been going through a series of testing and treatment plans and this is the first I’ve had to take a breath and have some clarity about what is going on with my situation.  After 19 years I have a new primary cancer in the same breast as was first diagnosed in 1998.  Interestingly enough, it’s a different cancer than the estrogen receptive cancer I had in September of 1998.  Triple negative….I was celebrating it was different than the first one..not estrogen receptive and was told radiation and 5 years of estrogen sucking drugs wouldn’t be my protocol.  Then I researched triple negative.  ARGGGG, damn you internet!  African American women – more prevalent; young women – more prevalent; Hispanic women more prevalent.  I am none of these.  I’m a white 61 year old woman who just retired on June 30th of this year and had my first grand baby the week I was diagnosed.  Hense the stall in setting up the site also.

I should be celebrating my freedom from work, my new role as a “grammy” to the cutest grand baby on earth (LOL) but yet my days are now consumed with cancer thoughts, cancer treatment, cancer worry, cancer what-ifs and appointments to get this going.   I start my first treatment next Tuesday September 12.

I told my husband tonight I feel like I’m facing a firing squad and they were told just to take her down a notch….This chemo is totally different from the first diagnosis.  I didn’t lose my hair, I worked through it all (yes I was tired but had little kids back then).  I already have my new wig named Tasha, I’ve stocked my cupboards with meal supplement protein powder, organic burritos, Cheese Nips, Graham Crackers and Gatorade and am holed up in my bedroom until my first treatment.

Come get me but stay away from the girl on the left.  She’s my daughter.