Leap Day Musings February 29, 2024

 On this last day of February in a Leap Year (February 29th) I’m making a few notes.  First, I'm feeling less scared and more centered, today anyway.  I finally mailed back the Quest Diagnostic box of supplies I’ve had for a YEAR and returned the AICD programmer that was Donald’s I’ve had for 3 years.  I still felt sad turning it into the cardiology office. 

I went to Overland Park yesterday and got my wig the VA paid for.  I love the cut, style and color.  I guess I will have Dan shave my head after my first chemo treatment this Monday, March 4th.  I’ve read and been told by the NP in the oncology office that my hair will fall out by then 3rd week after the first treatment.  I had a telemedicine visit with her (Madalyn) Monday and she covered every terrible and less terrible side effect I could have.  Then I wanted to give myself the second day injection and that is not covered by my insurance.  So…trying to get the VA to pay for it but when I looked up the cost the cheapest price I found was roughly $4600 a dose!!!  I’m not optimist the VA will pay for it since I am not getting my cancer care through them.  I will probably be driving the day after chemo back to KC to have the office administer it.  Sometimes it just doesn’t pay to be a control freak.

S**t is getting real

Been a few days so checking in.  Yesterday I talked to the NP at the oncology clinic in Kansas City where I will begin my chemo next Monday, March 4, 2024.  She went through the possible side effects, some temporary, some permanent that can happen with chemo.  I was also unaware that I had to have an injection of Udenyca (WBC booster) the day after chemo and I asked about the possibility of giving myself the shot so I didn’t have to drive to KC.  Well, I looked up the med, as well as the cost, and holy mother of God!!  All kinds of scary stuff can be side effects of just that drug, not the chemo and it costs $4600!!  A single injection.  I messaged the VA to see if they would cover it as I was told my insurance won’t pay for it if it is self-administered.  I don’t know if I want to be alone when I get it now after reading all this terrifying information.

I will be getting Cytoxan and Taxotere for chemo.  I gather that is a standard regime for early stage breast cancer.  My treatments are one every three weeks for 4 treatments.  Besides losing all my hair, possibly turning my nails black, making me nauseated, vomiting, mouth sores, fluid retention, possible cardiac and pulmonary issues, plus possible kidney and liver issues,  it should be a piece of cake. 

Anyway, feeling scared now, not just anxious.  Of course it all gets expressed as anger, my go to emotional response.  It also makes me want to isolate but I know that is not the best coping strategy.  All I can say is WTF.

More later.

 

My Cancer Journey -Timeline

 As I alluded to in my last post I am going to document my cancer experience here. I have been journaling on paper and probably will continue that as well, but I want to document a timeline of events here too.

October 3, 2023

Screening mammogram SV Women’s Center.  I had no palpable lumps, discharge or any other symptoms of breast cancer.  Contacted later I needed additional mammogram views to be scheduled.

October 19, 2023

SV Women’s Health Center - Additional 3D views.  visit after with Dr. Michael Glass, told area looks suspicious (left breast) and will need a US-guided needle biopsy

October 31, 2023

US-guided needles biopsy left breast

November 3, 2023

Results back:  DCIS, Invasive Inter-ductal Carcinoma, estrogen and progesterone positive, HERS2 negative

November 16, 2023

First visit to oncologist Cotten-O’Neil Cancer Center, Dr. B. Weckbaugh.  Treatment plan overview.  When asked about genomic therapy, chuckled and said that was science fiction.  Wow!  I told him I didn’t Google that, I was a nurse and was asking about the latest research.   He quickly apologized but not a good impression.

November 20, 2023

Called KU Cancer Center for second opinion 

December 12, 2023

Left partial mastectomy (lumpectomy) Dr. Amanda Loeffler, SV Health

December 19, 2023

 Re-excison left lumpectomy, margins on first procedure did not come back clear.

December 20th, 2023

Pathology reports all clear of cancer cells this time around!

I was going to go to Dr Khan in KC, changed my mind to see Dr Weckbaugh in Topeka. We had a further conversation that made me lose confidence so decided to go back to Dr. Khan.  Whew, this cancer stuff has made me hyper vigilant and I want a physician that pays attention to detail.

January 18, 2024

Video appointment with Dr. Stecklien, Radiation Oncologist at KU Cancer Center.  Since treatments will be daily, asked for referral to St Francis Campus in Topeka.

January 22, 2024

Saw Dr Khan and I felt he was dismissive and really didn’t want to follow me.   He referred to an oncologist in Topeka after suggesting I could go back to Dr. Weckbaugh.  I was shocked because at the first visit he was so positive and said he would be glad to treat me.  Was it because I briefly changed my mind??  

January 23, 2024

I called Dr Khan’s office and talked to his nurse practitioner (who was in the room during the visit).  I told me I felt he was very flippant and dismissive and if I got a survey about the visit and was going to be very honest about how I felt.  She of course said he wasn’t, he was just trying to make my treatment easier with less travel.  I told her as the patient it was my perception that mattered and that is how i felt the visit went.

January 26, 2024

Cancelled the visit with oncologist at KU St Francis Campus, Dr. Caracioni.  I researched on health grades for female oncologists and I compared his rate of treatment of breast cancer with two women oncologists at another location in Kansas City.  I called Dr. Satelli’s office and spoke with the new admissions nurse and Dr. Satelli’s nurse and was told Dr. Khan would have to put in the referral since that was KU’s policy.  I asked for one through MyChart.

February 1, 2024

Consult with Dr. Butler, Radiation Oncologist at KU St Francis Campus.  went over options again it with more detail.  Radiation treatments will be 2 or more weeks after chemo is done.

February 2, 2024

First appointment with Dr Satelli, KU Cancer Center, North Kansas City.  Discussed in detail treatment options, research, etc.  Agreed to proceed with chemo, next step is to have port inserted.  Will go to IR at Stormont.  The will call to schedule appointment.

February 13, 2024

Port-a-cath inserted at Stormont. Wow, horrible experience except during procedure.  I will add that I never actually saw the radiologist. I was prepped and draped before he came in the room so there was no introduction, just right to the procedure. I was not impressed. Then my Nurse pre and post procedure was incompetent and the post procedure course was very painful. I felt blindsided by the whole thing.  Up to date as of February 18, 2024

I guess I would say last week I felt shell-shocked!  I never had a clue putting in this port would be so traumatic!  I feel dehumanized.

Update;

March 4, 2024 first of 4 cycles of Taxotere and Cytoxan.  Tolerated fairly well  

March 5th, 2024- injection pegfilgrastim

Back pain with muscle spasms, nausea, diarrhea, flu-like general malaise  first 2 weeks  

March 25,2024 - 2nd cycle TC tolerated ok

March 26, 2024 pegfilgrastim injection 

Temp first night of 99.7 , back pain exacerbated, diarrhea, nausea, fatigue 

April 1, 2024- Called office to get something other than Imodium to treat diarrhea  Have been unable to keep down anything except popsicles consistently all week since treatment  

I was in bed most of last week  I hope every cycle does not affect me like this.

Life at 0200

UPDATE:

This post is from 2015 but was in a draft form and I published it tonight, February 12th, 2024!  My job at Cerner had just been abolished, their favorite thing to do yearly.  I was also eligible for “voluntary”retirement or I could apply for another position at CERNER within 60 days.  I took the voluntary deal which offered enough money I could stay home for awhile.  I still struggled.  I ended up not finishing my doctorate as may husband got sicker.  I used his illness to provide a way out of a degree I no longer wanted or valued.  Donald died 3 years ago but we had moved back to Topeka, KS so he was closer to the children and grandchildren before he died.  

Again I can't sleep.  This means tomorrow, er later this morning, my dog will wake me around 0800, I'll let him out, and then I will go back to bed until at least noon, probably longer. I have to do lists that I keep putting off and things like bills and taxes don't get done.  I am working on my doctorate and that work is stalled too.  Will I ever feel productive again?

Putting on a face that doesn't make people uncomfortable is the norm.  I think it is for most people that are really going through hell on the inside but want to abide by social niceties by appearing to be happy.  Much is written about how unhealthy it is to deny one's feelings but that is not reality.  The expectation is to make everyone you meet comfortable and your friend.  This is especially true for women who are trained early on that being one of the popular kids is what defines success.

I have always been a loner.  I spent many years blaming my parents for my personality since there is plenty of evidence to support nurturing and stability are part of the foundation that defines a healthy human being.  I didn't have much of either growing up.  But my parents had their own struggles and I am sure did the best they knew how,  My father grew up in a dysfunctional home, ran away at 15, joined the Army during WWII and was captured during the Battle of the Bulge.  These experiences profoundly affected him his entire life.  I know he suffered from PTSD that resulted in I don't know how many jobs, but I do know I attended 26 schools before dropping out after my junior year.  We crisscrossed the country and loss was a common occurrence; loss of friends, loss of material things because many times we had to sell everything to finance our trips and loss of security.

My Mom was the little sister of two brothers and I think her father's favorite. Even though she lived through the Depression, I always had the impression she was pampered. Not that my grandparents were wealthy, but they were small business owners for a time and my grandfather held other blue collar jobs.  She was a few weeks shy of her 17th birthday when she went out on a blind date with my Dad and married him the next day. My Dad's step-father was a minister who married them and they stayed together 46 years.  They had seven children, one who died from "crib death" or SDS at 6 weeks from which my Mom never fully recovered. 

Alcohol was a resident in our home too and Dad''s best friend.  My Dad was a loner himself and a brilliant man but never completed his college degree.  I think now he also had ADD.  He loved to occupy himself in a basement or garage with one of his passions, ham radio and old cars and trucks. His other passion was wine.  My Mom dropped out of high school and felt she wasn't intellectually my father's equal, an impression he didn't do much to dissuade.  But my Mom was not only smart, but she was also a very dynamic person, a "firecracker" who at 5'1 and 98 pounds could hold own with anyone.  I adored her and wished I was more like her.  Over the years she became chronically ill with respiratory and cardiac problems but remained the strength of the family until her death at 62 years of age.

I didn't mean to go into all that family history, but my early environment still plays a part in who I am today.  I obviously finished high school by attaining a GED and through many years of work and sacrifice by my own family, I attained a master's degree in nursing when I was 39.  Now 63, I am 9 months or so away from completing my doctorate, that is if I can motivate myself to actually be productive instead of just talking about it.

On the whole I have had a good life.  Married for 42  years with three grown children and nine beautiful grandchildren.  My husband has some serious health issues but is active and stable.  My children and grandchildren are healthy and a joy beyond words for the most part:)  Some of the kids have had financial difficulties but have persevered and are moving forward.

I guess I write because all is not good.   I have a story not unlike many others.  One day I had a job that I thought was secure and then after one phone call I was completely severed from the company I worked at for 12years.  No goodbyes, certainly no send-off parties, it was like I never existed.  That is the toughest part.  Now my childhood prepared me for loss, but this feels like a death I am trying to recover from.  I meditate, read Buddhist books, think, look for silver linings, all that, but I am still in mourning.

I will recover.  I know that.  But I am so tired of acting like everything is fine right now.  But again, that is what society expects.

 Wow, it’s been a long time since posting here.  Lots of other social media stuff, but honestly I haven’t thought of this blog for years.  What makes me return is I want to document my cancer journey and this seems the most appropriate place. I’m not saying much today, after all the Super Bowl is in a few hours and I need to get ready for the Kansas City Chiefs to kiss a**!