Skip to main content

Mathew's Prognosis and Hindsight

From Mathew's Journal

Notes from Dr. Gonzales
3-5-14

 - pathology slides in right place.  There was a point where we thought that after my efforts to go get them and hand deliver them, that they had gone to the wrong place.
- Damon Reed oncologist

**Expectations
- broad category small blue round celled tumor
- if it is Ewing they need a confirmation at a molecular level.
- my liver cannot tolerate chemotherapy - hence the need for the stent.
- the stent may or may not be permanent.


Notes from Dr. Gonzales
3-7-14

- everything hinges on whether the liver improves
- large tumor back of abdomen - the liver
  • - falling short of saying what I have is incurable
  • - the liver needs to keep getting better
  • - 20% to 25% chance of response for Sarcoma
  • - different types of tumor may respond better
  • - vena cave still a danger
  • - Bilirubin at 5 bring down to 2
  • - got to find out what type of tumor

Hindsight, or what we didn’t know, was in one sense a blessing because knowing wouldn’t have changed anything, except our level of distress.    
Dr. Gonzales was very honest with us. When he told Mathew the percentage rate of survival he reiterated it by saying “That means in order to cure one patient I need to have treated another 4 patients that weren’t cured.” I recall thinking, so if it’s a numbers game, we don’t have enough players.
** I think I need to go back and ask them, at this point how many Desmoplastic Small Round Cell Sarcoma patients they had seen.


I see the commercials for the well-known and wonderful children’s cancer hospital and in the commercial, a voice says “One in 5 children diagnosed with cancer will die.” In my mind I always think, unless it’s a Sarcoma, then you can flip those numbers.

The other hindsight I highlighted was regarding the small round cell tumor. Pay attention to the commercials about treatments for certain cancers and they specify “If you have non-small cell” cancer this treatment is for you.
I spoke to a friend whose parent had passed away from small cell lung cancer and he was told that the small cell cancers are fatal.

I will do some research on this soon and post an update post.










Labels:

Comments

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
Post a Comment
Read more

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
Post a Comment
Read more

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
Post a Comment
Read more