Dana’s Story

Site created on July 26, 2022

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My Story: Beware, I have a potty mouth, read at your own risk and this is a long “story”.

By a fluke, my mom found out she had breast cancer at the young age of 47. She fought a long hard battle for 15+ years and passed June 22, 2005. Due to her age at diagnosis, our primary care physician (PCP) had my sister and I start our mammograms early. I had my first baseline mammo at 38. Close to a year later, the bank I worked at was hosting a Mammogram party to promote health and wellness and early preventive care. Of course I signed up for the free massage, free wine, free chocolate, and free paraffin wax right away (And, the dreaded mammo!). Yes, the mammogram party was a thing, yes it was weird knowing all your lady friends were getting their boobs smashed, but……. Less than 24 hours later I had several calls from a number I didn’t recognize. Of course I ignored the messages because 1) I was at work 2) I didn’t know who the heck was calling. The following day my doctors office and the Mammogram party people were again blowing up my phone. I learned I had an abnormal tumor that needed checked out further. The next steps included a breast sono, visit to a surgeon, biopsy and two and a half months of waiting for the pathology report. December 23, 2010 walking into Nebraska Furniture Mart in Kansas City, I found out I had a rare malignant phyllodes tumor. At the time, these types of tumors were not responsive to treatments other than to remove it and hope they took a wide enough margin to get all the bad cells. If these types of tumors grow to large and/or metastasize it’s pretty much game over. Why did it take so long to get the result? The two local pathology offices had never seen that type of “specimen” and was not able to accurately type it. It was finally sent to the Mayo Clinic where they provided the results. Two surgeries and a hell of a lot of mammograms and sonograms later, I got the all clear.

Fast forward, 2018ish, my oldest daughter had a large lump (over 3cm) removed. Due to its size and how fast it grew, her breast surgeon recommended I do a gene test to determine if I had the BRCA 1 or 2 genes (breast cancer genes). If I did they would make the assumption my kids do too and we would determine a preventive treatment path for the three of us. Surprisingly, I do not have the BRCA genes, but instead lost the gene lottery and found out I have a TP53 gene mutation. It is hereditary, most likely from my mom, but we will never know for sure. Below is a link that explains it in more detail, but basically, shit doesn’t work like it should and I am high risk for a variety of cancers and have since become a human pin cushion. I have been scanned head to toe multiple times, have blood work every quarter (well, I’m supposed to, but skip it once in a while), pelvic sono’s, breast MRI once a year, a mammogram once a year and lord knows what else. I have a spreadsheet to track all the “stuff”. What we’ve learned is I have a small (pea sized) benign meningioma in my brain (not a big deal), a large kidney stone that looks like a thumb and at the time more suspicious breast tumors. More biopsies and more body scans, and in May 2019 I had my ovaries removed and everything appeared to be on track. Why the ovary removal? My gynecologist basically said she would not be my doctor anymore if I didn’t have them removed. With the gene mutation I was high risk for ovarian cancer and if I did get it I would be dead before I was even diagnosed. That was reason enough and we removed those babies. I was immediately in a hormonal spiral. It was not fun. I cried a lot. A lot. On planes. In the car. At work. Everywhere. For no reason.

Within the last year I find I’m extremely tired all the time (more than normal), have a lot of joint and muscle pain, especially after working out or walking and experiencing the dreaded weight gain. It was all chalked up to working a lot, being thrown into full blown menopause and it’s just what happens at my age.

I was on a work trip in St. Paul, MN mid to late May and noticed a lymph node on the right side of my neck was the size of a pea. I didn’t think much about it. I assumed I had COVID and didn’t know it, and it was my body trying to fight off the infection. A couple weeks later I was in Boston for another work trip and noticed the lymph nodes on the entire right side of my neck and top of my collar bone were all swollen. Still didn’t think much about it. I landed on a Thursday night, was super stiff from traveling and working out and went to get a massage on Sunday. If you live in Wichita, you really need to go see Frank and Jimmie in the Town West Mall. They are the best Asian Massage Therapist in town and they are reasonably priced. It does hurt like a mother, but you will feel better the next day or two. Anyway…..Jimmie is my guy and as he was doing his thing, he felt my lymph nodes for a few seconds and then just skipped my neck. That was literally an “oh Shit!” Moment. Jimmie didn’t say anything to me, basically because he doesn’t speak English, but I knew immediately something was wrong. Actually, the only words I’ve ever heard him say are “How you doing Ms. Lady?”, and “that will be $100”).

I did see my PCP that week, the week after had a sonogram on my neck, the week after that saw a surgeon, the week after that had a lymph node removed, a week after that found out I have small lymphocytic lymphoma (SLL), and the following week meet with the oncologist (Cancer Center of Kansas - Dr. Nassim Nabbout).

Dr. Nabbout did another blood test and CT scan to see if I have other enlarged lymph nodes or other symptoms internally. The CT scan confirmed I do have several enlarged lymph nodes in my abdomen. Not super enlarged, but enlarged. I tried to convince him these several enlarged lymph nodes are the cause of my weight gain. He did not confirm my self diagnosis and said it’s due to too much food.
A-hole!😜

What is SLL? SLL is the same thing as chronic lymphocytic leukemia (CLL) and they are treated the same. Lymphoma starts in the lymph nodes (duh!) and leukemia in the blood or bone morrow. SLL is slow growing, not curable, but treatable and can turn to a more aggressive form of lymphoma over time.

What stage? Don’t know, forgot to ask🤣. But at this point doesn’t really matter.

What’s next?
I start a targeted therapy which consists of 8 IV treatments over the next 6 months, and two pills a day for 12 months. The good news: because the treatment is targeted the side affects are much less than if I were doing chemotherapy. If this was 5 years earlier the treatment plan would be chemo. Chemo kills all cells both good and bad and causes a lot of side effects and hair loss. Targeted therapy kills specific cells that are dividing and growing rapidly. Dr. Nabbout assured me I will not lose my hair so that is a huge plus. I know it’s dumb, but that is the thing I have been worried about the most. I have an onion head as it is. An onion head with no hair is not a good look. Thank goodness for medical advancements.

When do I start?
The first IV treatment will be split into two sessions. The first session is 9/1, the second 9/2. The second treatment is 9/9, then 9/16. After that the remaining 5 will be once a month. After the third session I will start the daily pill regiment.

Why do they split the first treatment?
They split the first IV treatment to avoid overloading my kidneys with dead cancer cells and causing kidney damage. I’ll be drinking a lot of water once I start treatment and they will monitor kidney function through the treatment series.

What’s the prognosis?
The treatment has a high success rate and the goal is remission. Once I’m in remission then we monitor the situation and basically rinse and repeat as many times as needed. Again, SLL is not curable, but treatable. The oncologist said I may have fatigue from here on out, but just going to play it by ear. If you see me out and about and I’m asleep, just nudge me to stop my snoring and wipe my drool.


Below are few websites with more information.

TP53 Gene Mutation
https://www.pennmedicine.org/news/news-releases/2020/july/rare-mutation-of-tp53-gene-leaves-people-at-higher-risk-for-multiple-cancers#:~:text=Mutations%20in%20the%20TP53%20gene,able%20to%20direct%20the%

SLL
https://www.cancer.org/cancer/non-hodgkin-lymphoma/about/b-cell-lymphoma.html



Dr. Nassim Nabbout
https://www. https://cancercenterofkansas.com/medical-team-member/nassim-nabbout-md-facp/

Newest Update

March 12, 2024

Journal entry by Dana Adams —

First, I realize how fortunate I am to have a illness that allows me the chance to continue making trips around the sun and I'm grateful less evasive treatment options exits.  Please don't ever think I am complaining, I'm just telling it like it is.........

 

Friday, March 8 2024:  

  • Cinda and I got up bright and early and made our way to the Cancer Center. 
  • The first step is to get labs drawn and wait for results to make sure you're a go for the infusion. 
  • Glad I was in Chair 5 and Tammie is my infusion nurse.  She is super sweet, bubbly and always makes the day brighter. 
  • Labs checked out and all counts are in normal range.  It's weird how freaking tired I am, but yet, my blood work always looks good.  
  • Today's cocktail consists of Tylenol, and Benadryl straight into the superior vena cava (large vein above the right side of the heart).  Within a few minutes I start to get drowsy and loopy feeling.  Next comes the steroid (dexamethasone) and an IV drip.  Dexamethasone helps with inflammation and helps kill off the cancer.  It also makes me angry.   Amazing how one little shot can flip your personality in such a short time. 
  • Once things get rolling they start the first of three bags of Rituxan.  
  • In the past I fight sleeping, but today was different.  I was in and out most of the day and slept so hard I missed Tammy changing bag number 2.  My chemo neighbors did cross word puzzles all day.  Glad I was able to help them with "What letters does a cardinal wear on his cap?"  The answer:  STL (St. Louis Cardinals).  I put my headphones in an listened to music.  
  • Cinda hung out and read and watched The Asher House video's most of the day.  The Asher House is a dog sanctuary in Oregon.  Lee Asher the owner quit his job, bought a large tract of land (I think 240 acres), and rescues 100's of animals.  He runs his operation all from donations.  If you haven't seen or heard of The Asher House you should check it on on FaceBook or TheAsherHouse.com.   There are some sad moments, but all in all feel good videos.  Plus he's kinda cute. 
  • We arrived at 8:00am and finished at 2:30.   The first day always take a little longer as they slow down the infusion and check your heart rate multiple time to watch for possible allergic reactions.   Next time should go a little faster. 
  • Cinda dropped me off, I walked downstairs, watched TV and slept most of the evening. 
  • Dogs can sense things humans don't.  My granddog Jayde, has literally been attached to me since I got home.  I had some bags sitting next to me and she just crawled over them and laid on them to be close to me.  She keeps getting in my face and smelling my breath and laying on my chest.   She has not left my side for several hours.   
  • I couldn't find my Poison shirt to wear today, kinda bummed, but will look for it for #2.

Saturday, March 9, 2024: 

  • Slept in and had a uneventful day.  Had a little pep in my step and took sheets, blankets, towels, comforters to the laundry-mat to get them all done at once.   Swept, made beds, folded a few things.  The steroids give you a little energy. 
  • As the day progressed starting to get tired as hell......... 
  • I'm a cranky girl............real cranky.......don't look at me cranky.......
  • Watched TV most of the day.  Unable to sleep because the steroids keep me awake.  My brain just hums every time I close my eyes.  Finally took some night night pills.  Slept for 7 hours. 
  • Jimmy finally dumped Chelsea on Love is Blind.  I can't believe Clay didn't marry AD.  

Sunday, March 10, 2024

  • Same as Saturday.  Nothing new.
  • Can't sleep. Night Night Pills.  

Monday, March 11, 2024

  • WTF just happened.  About 1:00pm I hit a wall.  I am so freaking tired I can barely function.  My little brain is confuzzled.   I barely made it through the rest of the work day.  Ate a little dinner, took some Tylenol PM and went to bed.  
  • Jayde continues to be my protector and sleeps next to me or on me.  This girl does not leave my side. 

Tuesday, March 12, 2024

  • I'm a new woman today!  I feel so much better, still a little tired, but overall feel pretty good.  Sometimes when you feel crappy, you don't realize how crappy you feel until you feel good again.  Still a little edgy, but turning the corner.  
  • Starting to have some chemo brain moments.  My brain goes blank when trying to pull out simple words.  Hopefully, it won't get too bad.  
  • I get shingles and have had them in the past multiple times.  They are stress induced.  I've had the shingle shot, so they are not sever, but the stress on my body is causing a small flare up.  

In other news, Karsen informed us last week she rescued two cats, Archibald and Fitzgerald, Archie and Fitz for short.  Can't wait to meet them.  She will be home this week, but leaving them at her house with a friend as they continue to get acclimated to their new environment.  They have bounced around from shelter to shelter and not trusting yet of their new home.  Grammie will have to go for a visit soon.

If you haven't watch Hunter Killer with Gerard Butler its a good watch.    The Gentlemen on Netflix was ok.   Can't believe I started Season 1 of Love is Blind, but here we are.  The Damsel is a little out there, but it was ok.  White Chicks is always a favorite and watch it every time I get the chance.    I hope Bryan Kohberger gets the electric chair for the Idaho College Murders.   How in the hell can they push off the trial until summer of 2025? 

I love the month of March.  It's my birthday month, the weather starts to warm up, the flowers start to bloom, and the sun is shining.  Best of all, its sweatshirt, shorts and flip flop weather.

Wishing everyone a great week! 

PS... The pics attached:  How the day starts, mid-day, how the day ends.  Plus my new grandkitties.   For the Record:  This shit is hard on a girls complexion and yes, my airplane pillow is back.  I have an unhealthy attachment to it. 

Read More of the journal titled "March 12, 2024"
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