Texts and Mathew's Journal, We Receive a Diagnosis

Texts to a my friend Kristen

Primary came in today. Bili is down to 5.3!!

Pathologist and medical oncologist coming in

to talk about treatment options.

He will be transferred to their care.

Sent March 11

Thank goodness…let me know what they say! Xoxo

Rec’d March 11

Med oncologist team member says

Mats liver isn’t ready for chemo. They

are going to use this time to take another

biopsy of tumor and bone marrow.

More info later today.

Sent March 11

Did they already get the information from the first biopsy?

Rec’d March 11

Inconclusive. The general diagnosis is

Blue Round Cell Sarcoma of which there

are many. Some are highly responsive to

treatment, some aren’t. Some go into the bones.

Sent March 11

What is going on with his liver? do they know?

Rec’d March 11

Just recovering from bile duct being

blocked by tumor.

Sent March 11

He also has swelling of the legs because

the tumor has moved his vena cava which

is the artery that drains the lower body.

Sent March 11

LATER THAT SAME DAY

Final diagnosis

Desmoplastic sarcoma. Starting

chemo in a few days.

Very aggressive chemo. 5 days and

then in three weeks again and then again

and again, Not sure how many cycles.

Sent March 11

From Mathew’s Journal

3-9-14

The Dr has put an input max on my fluid intake to a liter.

Which is frustrating because I thought I had been speeding along the healing process with large fluid input only to find I had been hampering my progress by washing out by sodium chloride.

Lastly, I walked 4 laps around the hall, exciting as it was my first time walking outside my room. also exciting because I moved without a walker assisting me.

3-10-14

Today has been a tiring day. I was plagued with fever dreams again last night after all day of limiting my fluid intake.

-dreams of fucked up game shows

-dreams of my brother hurting himself at work and me running screaming into the arms of a lovely nurse and she says we can get drinks together.

“By God she’s trying to kill me.”

Awake to Drs. want a scan with contrast to make sure my stent is in place.

Don’t eat and drink.

-I already have.

Diarrhea before slipping into another hospital gown.

nerve wracking ultra-sound where the techs keep muttering to themselves “strange”

“This is it” I think.

Later, the pleasant Dr Rashad informs me the liver blocking the bilirubin is still a mystery.

He hands me a copy of the much awaited pathology report.

I read it quickly.

Conclusion “undifferentiated round cell sarcoma.”

There was another word, but it escapes me now. You think I would commit it to heart like the name of a lover.

Still every day remind myself about mindfulness.

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 ...

Why is it Called Confections for Cats?

I want to take a moment and talk about why Project Mathew is called Confections for Cats. The main reason is that it was going to be the title of his first album. He had sketched up some artwork. We were working on it in Photoshop. Here is an early permutation of the artwork. Mathew's life, his story is mainly about music, his music, and his journey through cancer. When he created his Facebook page, he named it Confections for Cats and I continued with that name. I have been thinking about a logo, a way to incorporate cats, Sarcoma and his music. I like to brainstorm. So, I was thinking about the word confections. When Mathew first told me that title, this was before his diagnosis, I recall thinking about how he practiced his guitar into the night and early morning and that his cats have been his constant audience. Sweets, confections for his cats, and his music as delicious morsels for our ears. I looked up the word confections and yes, a confection is a sweet. Bu...

The Rollercoaster of Chemotherapy Fewer Highs and More Lows

TEXTS BETWEEN ME AND ARPIE Mat sees Dr. Reed Thursday at 9 and then at 1 he goes to have biliary stent changed to a larger gauge. We had to reattach a bag this morning. Sent May 12 I have Dr's appointment myself Thursday will call after and see if you are still with Dr. Reed. ...

Confections For Cats

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