Skip to main content

This is the Story of Sarcoma


Where do I start?

The story of Mathew's cancer did not start when the medical community finally recognized the problem. It started much earlier, but the road to Mathew's diagnosis is a tragedy and deserving of a blog of its own. This blog will begin with his long-overdue diagnosis.

Sarcomas are the rarest cancers and predominantly affect the young and are often misdiagnosed with tragic consequences. Soft-tissue Sarcomas are usually fatal after months of devastating treatments. This is the story of Sarcoma.

For reference:
The number of new breast cancer diagnoses in the US is approximately 256,000. 
           Close to the population of Madison, Wisconsin.

The number of Sarcomas diagnosed last year, 12,390. 
                           For a visual of this number see images for Gallagher-Iba Arena in Stillwater, Ok.

The number of Desmoplastic Small Round Cell Sarcoma patients? 
                          The number of students in a small classroom. 20.


A word about the people in Mathew's life that year.

I will mention a Stepmother and a Stepsister, not to demean or make less the importance of them in my son's life but rather to explain why one of the items of his bucket list was to survive to see his new nephew. So you know that Mathew was an Uncle, yet I have no Grandchildren. Another to see his little brother's next birthday, though my only children are Mathew and his twin brother Joseph.

Mathew's care was a group effort, and we supported each other. 


I will be as honest as possible; we all made mistakes and had our conflicts. It would be easy to gloss over, but I will not.

Comments

  1. Billie -always MomMay 2, 2018 at 11:49 AM

    Hello, here I sit in my bed. I should be doing so many things, but it's getting closer to the anniversary of my son's death from this devastating cancer. He was 15 by the time we found out that this cancer was raging through his body. We were informed that he was at stage 4 and had a half hour to gather our things and get him to the oncology unit. His liver was shutting down. We tried everything but he passed away at 16. I appreciate all of the entries you have posted. Your son's music and his words are most heartwrenchingly beautiful. I do believe i have become stronger around it as the years have past (8 years coming up) that I can carry the pain versus the pain dragging me. May you have strength to keep going today. You have helped me.

    ReplyDelete

Post a Comment

Popular posts from this blog

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out.  I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL     5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. -  I’ve been thinking about dying a lot lately. I don’t know why it has hit

The Chemo Bell at Moffitt Cancer Center

Bells ring.  Bells, chime, toll, peal, resonate and resound. Bells foretell, warn and celebrate. The Chemo Bell The Survivor Bell Cancer Centers have one or several large bells, each with a large clapper. They are mounted on the wall and when a patient receives their last chemotherapy or radiation treatment for cancer they ring that bell. Mathew and I heard the Chemo Bell in the Infusion Center at Moffitt ring one time. Early on our journey. Everyone clapped and cheered. Mat and I stopped and looked at the bell that day and I thought at that time, it was a possibility for Mathew. Bells have a vibration. When a chemo bell rings, when a person survives cancer (even if it’s for a short time) they resound for the rest of us. Their survival reverberates and gives the rest of us hope.  I found another chemo bell on the 5th floor at Moffitt, in the hallway, past the patient rooms.  Next to the chemo bell was a copy of a photo of a patient surrounded by loved ones

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time  I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain.  We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other  procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If any big pr