I'm eagerly anticipating new meetings with CancerCare's oncology social worker-mediated groups.

Here I am going to serve as publicity flak.

1) they gave me two wigs -- 

the insurance-covered place is certainly splendid, but I wasn't feeling going by train to Port Jefferson just then

they gave me two because there was the one that... was just really great but not the low budget option

about wigs: 

if you know me, you might be surprised I didn't shave my head, or plan fifteen different progressively shorter and more colored hair styles

but, I learned, as one of the only ppl at the buddhist monastery in Bodh Gaya who did not shave head: it takes much longer to grow back from ground zero

about scarves:

moving company in 2015 managed to lose the box containing ALL OF MY SCARVES

fortunately, mom was moving and sent me lots of her scarves she didn't want: pretty enough that passerby and friends were like, "that's a style choice, not chemo"

2) they have a great thrift shop

yeah, I mourn the demise of the Memorial Sloan Kettering UES thrifts and pop-up shops, but CancerCare's -- whoa, reversible leather jacket, $40; cashmere-lined leather gloves, $6;  sweater coats (hey, it gets ridiculously cold in hospitals)

I'm pretty sure I could have claimed cancer and poverty, but as a lifelong thrift shopper (from age 9?), with parents who owned consignment stores and shoe stores, it is incredibly satisfying to carry home as much as one can carry of quality clothes for under $200.  It was the Hadassah(?) in LA that provided me with all those Armani Suits, first cancer. 

3) as an organization, they step in: hey, you need help (important pandemic time)

 Some CBD and other OTC cream/pain relief research:

          CBD Creams, Lotions:

          I have tried several.  In general, I go online and purchase straight from the companies:  they often have discounts.  In NY, where creams are available in local bodegas/smoke shops, they are hideously expensive.  Think $60 for something that is $30 online.

          Quantity is a consideration.  You may want to sacrifice strength to get an Aquifor/CerVe-sized vat.  I find it helps relax the muscles that tense up around the areas that hurt most.

      Strength is my major consideration.  Currently I have CBDFx Muscle and Joint Cream 1000mg.  That’s right, 1000mg (1g).  It is easy to find stuff with as little as 25mg.  At that strength, Voltaren is better.

         CBD Salve:

          Think Tiger Balm with CBD.  I use one from Straight Hemp.  I have been known to use it as I use Tiger Balm, on my temples.  It can have a mild botox-like effect on wrinkles.

CBD Tincture:

Under-the-tongue drops.  I use these a lot.

          Oil:  Hemp is oil-soluble.  This is the reason one finds it in baked goods, capsules, creams, etc.  My criterion is taste and effect.  This is also the area where is type of hemp comes into play.  Leafly has real information.  For example, Sativa can be energizing.  I have been known to clean the kitchen after taking some.  Indica is more relaxing, anxiety-reliving, and sometimes soporific. 

I have Extract Labs Immune Support Hemp Tincture because it is rumored that it offers immune support.  But it is yucky:  it tastes like hemp. 1000mg.  Believe me, I did not pay $125.  They tripled their price when it received news coverage. 

My local (yes, my stretch of Kings Highway is equally divided between smoke shops and pharmacies (who claim they have notaries but do not)) has Blueberry and Blood Orange flavors *the same price as online*.

CBD Distillery is another source I have used. 

          Water-soluble: Binoid CBD has this.  I’m trying out peppermint 500mg.  This is magic because one can put it in fizzy water, hot tea, etc.              

          Delta 8, Delta 10, THC-O, etc.: These tinctures are perfectly legal and widely available.  They are metabolized as THC/Delta 9, which is not legal in NY.  They can show up as THC in drug tests.  However, they are stronger than just plain CBD.  So, yes, one gets a bit stoned. 

          Edibles:

CBD Gummie Bears are widely available.  I don’t use them because they contain HFCS.  Edibles in a vast variety are available where THC/Delta 9 isn’t banned.

Non-CBD:

Many creams contain menthol and lidocaine.  I have had co-workers who complained about the smell. Thus:

Voltaren was prescription-only ten years ago, but now it is in every “big box” pharmacy (I had friends who visited Italy all the time and would bring it back for me).  It is unscented. It is much better than

Vanishing scent Icy Hot.

Vanishing scent BenGay.

Lists include:

https://www.forbes.com/health/body/best-cbd-creams/

 

Holiday in...

Doctor's appointments over holidays are always challenging, because many patients have time off from work while many offices are doing their best to rotate their staff in order to ensure that everyone can have some sort of holiday. 

Waiting rooms are full.  Schedules slip.  Records and prescriptions aren't communicated as easily.  Thus, my "chemo teach" got bumped from 11 am to 3 pm, bumping a mammo/sono to 4 pm Friday.

The 3 pm (+45 min wait, but I was warned) had to be truncated, and so the port will be installed after my first treatment.  I was a bit surprised by the dexamethasone burst-and-taper over the next month.  I am sorely tempted to cut the pills in half. 

So, the mammogram/sono got moved to 4 on Friday, luckily, because there was a last minute cancellation.  Yes, there was a 45 minute wait, a snafu with the prescription for the tests, and a lack of records transfer. 

As we all knew (or at least I did, my last mammogram records weren't there), the visible dysplasia wasn't going to easily show up on a mammogram.  Was I surprised that more detailed photos of my left breast were ordered?  You betcha.  Same with the ultrasound:  we got better images of the problem area.  But we also got more thorough-than-expected images of my left breast, including one set gathered by the supervising doctor personally.

Note:  My dear ultrasound artist:  THANK YOU for putting a space heater in the room!!!  She explained that the room was kept cold, and the window wall was cold in winter (though it was an unseasonably warn 55 degrees). 

So there are two iffy spots in my left breast, ones that did not show up on the PET scan.  My surgeon will decide whether or not to biopsy them.  Hope is, whether they are benign or not, the neoadjuvant 
treatment will take care of it.  Still and all, I won't be too surprised by biopsies, and may even request them.  The swelling in one left lymph node detected by PET scan only (not me) may be explained by this stuff.

Whether or not they are malignant, they are a recurrence of the pre-cancer I had in my left breast, which is oddly NOT a spread of the cancer in my left breast, but INdependently co-arising. 

Breast Cancer Redux

Here's part of my story: 

Under my old health plan through COBRA, a second surgery was covered, but my mammograms (which generally are two-parters, due to irradiated tissue/need for ultrasound) were not completely covered. 

Last year this time, I discovered what appeared to be a keloid on the right side of my sternum.  It is exactly where underwrire bras hit me, and so that team and I basically said "check into it".  Why didn't I?  Doctor appointment exhaustion?  Billing & records concerns?

Thus, a year later, the little scar had changed size a bit.  For something completely unrelated, after I had visited a dermatology PA twice, I went to the Dermatologist she then recommended.  I asked, "so long as I am here, what about this?"  He immediately took a biopsy.  It was malignant breast cancer involving the dermis. 

It is not particularly operable right now, but wer're all happy the PET scan indicating that it is a "when you see is what you get" growth, not metastatic.  So, neoadjuvant therapy. 

We'll see how much and how quickly the growth becomes operable, excise it, and hopefully go at radition with a cycberknife, because of it's location in "Beverly Hills Adjacent" -- where the last radiation happened -- and then probably adjuvant chemo. 

I'm a "no monkeying with my hormones" person as well as a "I will suffer every listed side effect for every drug prescribed."  This persists beyond menopause.  I know it can be tough when doctors hear this, especially before relationships to patients form. 

Many people research their prescriptions and develop listed side effects subsequently.
But others, like myself, without being armed with information, are led to wonder, why on earth do I seem to have chemically-induced suicidal ideation?  Where is the x, y, and z problem coming from? 

Many people will look up cures, use message boards, or glean information from not particularly official sources.  That's not me. 

Thank heavens I forewent reconstruction surgery!!!

effectiveness of chemo at five years report

small sample, irrelevant for cancers where chemo is not typically used, but http://www.chrisbeatcancer.com/wp-content/uploads/2011/12/contribution-of-chemotherapy-to-5-year-survival.pdf Thanks #AnnahSobelman for leading me to this line of questioning.

Very Overdue Update

I started this blog when I was diagnosed. After graduating to one mammogram a year, I found that insurance coding had changed -- that while *screening* mammograms annually are free, if they find something (which they always do --) it is "diagnostic", and so not completely covered -- i.e., "well the screening mammogram was covered, they found something scary, and did an ultrasound, which we aren't going to cover 100%". Wha? You are doing this to someone who has had breast cancer? In any event, I was put on watch and wait diagnostic mammograms every six months (again) last fall. None of which are covered completely. Scheduling the new one now -- Because of all of this, I'm menopausal, which is cool -- So, at what's supposed to be the five year mark, I'm not five years clear, and some of my friends -- have gotten masses in different parts of their bodies -- and were informed that chemo only works for two years. Going to look that up and report back!

News

On the evening news last night, somebody reported about breast cancer.  My Mom and her friend (we were hanging out, watching the news), boosted the volume.  While the reporting about Gen X, Y, Z, breast cancer was particularly egregious, I ... had to leave the room.  

No soy, birth control pills, or other hormone manipulations.  No smoking, but especially no smoking with birth control pills.  Find out your BRCA statuses.  I understand, as you do, the risks of early mammograms, on large populations.  But if you have naturally cystic breasts, 35 is aok for a baseline mammo.

I started thinking about filling in the gaps on this blog and making it a bit more public.  

My last event, 9/12, worked out well, and I was a learning lesson on proactive invasive biopsies on young women who've had previous breast cancer, at Cedars-Sinai.  

Doing some eldercare here in Florida, I realize even more than ever that Lindi Vanderwalde in LA is not only a "great cutter", but also a friend in the foxhole.