I did not write a Pinktober post last year. I decided to put it on the back burner as October 2019 was a bit crazy for me.
I was dealing with the after effects of a really bad reaction to a chemo I had started. Gabapentin did a good job of trying to kill me. It was supposed to be a more gentle treatment. I went to the ER twice a few days after two different chemo treatments. The second time was what put the puzzle together.
On September 25, three days after chemo, I went in with a 103 F temperature and blood pressure that was so low, I had trouble walking and standing. Septic shock was the consensus, but no source of infection. I was kept in ICU for a few days until my mysterious condition stabilized.
On October 10, 4 days after chemo, I went back to the ER with the same issues. My oncologist put a quick stop to the chemo and started me on Navelbine.
I still had a pretty successful Witches Tea Party.
With that out of the way, you get to have some anger and sorrow-filled preaching.
Kim Wolski was one of those amazing people that I should have met in person. I can guarantee that we had passed each other a few times. She moved from Minnesota to Florida at about the same time I moved from Florida to Minnesota. She had stopped in Jax on her way to Tampa and even went to Einstein-a-Go-Go. I loved that little club.
Cancer murdered her December 10, 2019. She was beautiful inside and out. She was smart and a motivated MBC advocate. She was a wonderful mom. I hate saying “was.”
I did not know until March 2020 that Kim had died. I have been staying largely away from social media. This is the news that I miss out on. It is frustrating, maddening, and devastating.
To pay tribute to her, I wish to post something she had posted, and given me permission to write into my blog.
Kim Wolski 10/26/2018 “Actually…. here it is: Seer database:
A database is designed to be a host for storing data. How you filter and disseminated, would determine how you effectively utilize the database. Not having full data content can lead and would lead to misleading information.
Targeting certain markets doesn’t muddy the waters, it actually steers conclusions to wanted probable outcomes.
Especially with African American women who seems to have a greater risk of reoccurrence. The database can be a useful tool to filter down.
Look at my case, as a white woman with no history of breast cancer in her family, active, within BMI, nursed both of her babies for a year each, never smoked or drank; the likelihood of me developing breast cancer at all was less than 5%. And I metastasized right away with an aggressive form of BC.
If breast cancer is the second cause of death for women under 50, you would think that capturing and being able to filter my race, geographical, environmental would be useful in help finding a cure or at least making this truly a ‘chronic’ disease like AIDS.
Without the study of origin of the AIDS virus, would we have so quickly deduced a control one could argue.
As we get older, our cellular division mutating does scientifically makes sense, but with younger and younger MBC patients we are losing, it’s reached beyond an AIDS epidemic.”
But there is so much more. I should have copied some of the answers to her post. The terrible fact is that Metastatic Breast Cancer numbers are incorrect. I have preached on it before and metsters will continue preaching on it after I have left this plain of existence. The numbers are not low in a good way. They are low in a deceiving way.
People diagnosed at an early stage of breast cancer: stage I – III are not included in the metastatic, stage IV numbers. I see that this can cause a lot of issues. I have no idea why early stagers are not counted. This shit kills them too. It isn’t as if they are somehow magical and stage IV is nothing to them.
Approximately 30% of early stage breast cancer survivors become stage IV. Approximately is all I can tell you as the numbers are messed up. I see so many folks who have absolutely no idea what is going on come into my support groups. The questions and the statements are heartbreaking.
“I had no idea this could happen to me.”
“When do you ladies end treatment?”
“I don’t know how I got here.”
“I was cancer-free for 15 years.”
“What is Metastatic Breast Cancer?“
Then, there are the people like Kim and me. Diagnosed de novo. We are the 5%. With only 5% of us counted for studies, it makes sense that I was told this disease is so damned rare.
With stats like this, we often feel ignored. With more research focused on early stage breast cancer, we feel ignored. It isn’t that those studies are not important. They are. We just want to be acknowledged and have *MORE* studies done.
This is why I push Metavivor on my friends for donations every year. Metavivor is an important resource for us Metsters. They fund the research that is needed for Stage IV. They will not be able to save me, but I am hoping they will save future generations.
Don’t Ignore Stage IV