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Showing posts from February 25, 2018

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

Mathew's Head is Shaved

A barber was sent to Mathew's room to shave his head. It was ironic that Mathew had his head shaved prior to starting chemo.  For several years Mathew had grown his hair and donated it to  Locks of Love  for wigs for children with cancer. Mathew had always had wonderful hair. It's an emotional thing to have done and I know each person feels differently about it. You can see the bag and drain, his bili bag, draining his bile.

More than a Caregiver, Being a Patient Advocate is Critical

The Notebook pays off. In two previous posts, I mentioned that they would be using this time to take another biopsy of the tumor and bone marrow. I mentioned this in the Texts to A Friend and Texts to Mat’s Stepmom. From The Notebook I have notes   - 7:30 a.m. Dr. Gonzales came in (so at this point Mathew is still on 5 South).  - 8:45 a.m. A member of the Medical Oncology team came in and mentioned another biopsy.   - 10 a.m. Dr. Creelan from Medical Oncology Then, we get the news Mathew is being transferred and that Dr. Damon Reed will be the head of his oncology team. Dr. Reed is the head of the Sarcoma Clinic and that the diagnosis is Desmoplastic Small Round Cell Sarcoma. No New Biopsy is needed!  - Then Mathew is transferred.  - Jennifer Shaw, the pharmacist in charge of chemo, comes in and spends a lot of time explaining the different types of chemotherapy Mathew will receive. (I will cover this in a separate post).   - Melanie Sheen also comes i

Patient Consent to Sperm Cryopreservation and Storage USF IVF

O ne of the first things that happened with the diagnosis, transfer to chemo floor and impending first treatment was the discussion of one of the side effects of the chemo Mathew would receive. That was sterility. A program was set up where sperm (and I assume ova for women) could be harvested and saved so once a cancer patient has been cured, they can still start a family one day. Mathew had always wanted his own family and I always saw him as settling down, getting married and having children.  So, the paperwork was provided. At that time, it was $100 for analysis after drop off, which had to be no more than 60 minutes after collection.  Arpie, Diane and I had worked out the logistics. It was a bit of a drive and traffic could be an issue. Then, the sperm was stored by cryopreservation. Mathew filled out paperwork appointing me as the designee to decide the disposition of any frozen sperm if Mathew should die. I didn’t  have the money to make the first payment,

Transfer from Surgical Oncology to Chemotherapy

The day Mathew was transferred from 5 South to 5 North, the chemo floor, Mat’s Dad, Arpie, was there when we received the good news. The transfer meant they could finally start treatments! For weeks, I had been sitting in the lobby between the 5 South and North watching the other patients. I saw some walking the halls with their IVs in tow. One man told me he had to do more walking so he could go home. Home! I saw patients obviously being discharged and wondered when and if Mat would go home. I saw other families waiting. I overheard one conversation between family members, several were in tears and one person said, “Can you blame him, can you imagine living with that cancer like that. He can’t even eat.” I realized someone they loved was at the end of their journey. I wondered then, if that would be us, those of us who loved Mathew so much, having a similar conversation.  Often during any given twenty minutes, sitting in the lobby area on the 5th floor, I saw ourselves coming

Texts Between Mom and Stepmom

Texts to Diane (Mat’s Stepmom) Regarding the scan ordered to check the placement of the stent (see last blog post from Mat’s Journal). He’s back….everything is in  place…no details other than that. Rec’d March 10 K Sent March 10 Arpie is coming up in a bit if you want to wait until later this afternoon/evening. Rec’d March 10 Am on way Sent March 10 LATER THAT DAY Dr has ordered an ultrasound of his  abdomen. Worried about a clot.  Will let you know when he goes. Sent March 10 Yikes! Did he say what would do if there is one? Rec’d March 10 No. A clot can be so serious. Sent March 10 Yep. Many ppl are praying  and that’s what will make a difference. Rec’d March 10 Chaplain had just been here. Sent March 10 Good Rec’d March 10 Down at Radiology. Nurse said it  may take awhile. Sent March 10 K….waiting anxiously! Rec’d March 10 Back in room, no word yet.

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