Confections For Cats

Doxorubicin, The Red Devil in VDC Chemo for a rare soft tissue Sarcoma cancer. When I saw the Doxorubicin, I thought of that woman, in the IR who was so distraught about her son. I started to get that sense of seeing myself coming and going in the caregivers and family of the other patients.  This chemo can be toxic to the heart, there is a lifetime limit of doses. I was told 6 doses for Mathew. I suppose when you are hoping for a year or two of survival, long-term effects of treatments is a secondary concern.  I wasn’t afraid of it yet. It wasn’t until I saw how Mathew reacted to this chemotherapy and thought about the potential for cardiac toxicity. It was a long day, Mathew slept as much as possible. I read, drank coffee, and went to get us something to eat from the cafeteria.  When the treatment was through, I packed up the rolling bag and pushed Mathew in the wheelchair out to the valet to bring our car. On the way home Mathew complained a...

First VDC outpatient chemo The routine for this was to leave our home early (it was a 40-minute drive), go to the blood draw area to have blood work, then to the Sarcoma Clinic to see Dr. Reed, and then to the infusion center at Moffitt. There was usually a wait in the very large waiting room there. Then Mathew would be called back and pre-chemo meds would start, then the chemo, all of which took hours.  This was the first time, we were told it would possibly take as long as 8 hours or more. We had no preconceptions, there was no way to compare the 5-day inpatient I.E. chemo to the VDC. Each patient had a small area, the chair they sat in, a chair for family or caretakers, and room for nurses, and I.V. poles. Like a miniature hospital room.  This is when I started taking a rolling bag to accommodate the Monkey Bag, Mat’s journal, a book for me, snacks and my laptop.  At this time, Mathew still needed a wheelchair.  From Mathew’s Journal I t...

After the family meeting with Dr. Reed, he had the results of Mathew’s blood work taken earlier that morning. He told Mathew that he will go to the infusion center to receive his first outpatient VDC chemo. As I mentioned in an earlier post, we didn’t realize that this was the routine for these Sarcoma appointments. So Mathew was not mentally prepared for that chemo. Dr. Reed told him to come back tomorrow. “A day or two won’t make a difference,” he told us. Dr. Reed is one of the nicest people and an excellent doctor. I know he was just trying to assure us that it was okay to delay the chemo but when he said that I thought, “It doesn’t matter.”  I was still in let’s hurry, let’s push and muscle through the process to get to the other side. I hadn’t yet learned to live in the process.  So the subject of the Sperm Cryopreservation came up and that Mathew had not been able to provide a sample before his first chemo. Dr. Reed asked him if he wanted to try again since we...

This is what I remember about that first consultation with Dr. Reed. Mathew and all  the parents, along with Dr. Reed and I believe his nurse may have been there, all crowded into a small office. Dr. Reed passed around a copy of the chemo protocol for Ewing Sarcoma, which is what was also used for DSRCT. He explained that once they started hammering on the tumor they needed to keep the treatments close in order to keep the cancer on the run. My previous knowledge, based on personal experiences with family and friends and everything I had ever heard about cancer was this: You found a lump, a tumor etc. You either had the tumor removed and received more chemo or radiation for good measure. Or you received chemo and if the tumor completely went away, you were done. Cured!!! Not so with sarcomas. Even if the tumor completely disappears with chemo, you are not cured. You keep receiving chemo. There are some other options. I read about an intra-abdominal chemo wash, but t...

I may have mentioned this already, but it is worth repeating now. Today, as I type Mathew’s notes from our first meeting with Dr. Reed, as with all of Mat’s journal entries, I am also reading them for the first time. As I am typing this particular journal entry I am heartbroken, again. Still. This was the plan for my son. The treatment plan for a rare and aggressive cancer. He had one chance, this was it. That chance came and passed him by.  3-27-14 Mathew and I get up early to get to Moffitt for his blood draw appointment and then to the Sarcoma Clinic. We take the Monkey Bag, Mathew’s Journal, something to read for myself and some snacks for Mathew. I have a large shoulder bag, all of this fits in to. Over time we move to a rolling bag as our needs increase. Instead of the front entrance at Moffitt, we go to the side, Gold Valet entrance. Mathew is still very weak and he needs a wheelchair.  I’ve pushed people in wheelchairs before. My sister Maria was...

Again, the outer world for Mathew and his inner world from his journal. Texts between me and Mat Are you awake? Look at the pillbox in the room. One has pills. Plus your powder. Plus in the  fridge in cooler are your IVs. Looks like it’s a two part deal, put on desk in bedroom. Going to Walmart to find a watch  cap for you. Sent 3-26-14 KK. Sounds good. Rec’d 3-26-14 Everything ok? Sent 3-26-14 Everything is ok. Rec’d 3-26-14 Stopping to put in gas. Need sweethearts? Sent 3-26-14 Hard sprees if they have them. If not, cinnamon buttons. If not, sweethearts. Rec’d 3-26-14 K. See you in about 15 Sent 3-26-14 From Mathew’s Journal Later today I meet with the head honcho Sarcoma doctor. His name is Dr. Reed and I’ve only met him once so far in the treatment process. Whenever I meet with the doctors I have felt at a distinct disadvantage.    drugged up and ly...

From Mathew’s Journal 3-26-14 I’m having trouble drawing what I want to draw. I feel disgusted and I don’t know why. I took Ativan to try and relax. Hy heart and my head are pounding. My aunt's dogs have been barking for    the last hour straight.  -I miss the liquor store   - I miss being free without arm IV I wish I could I wish I could - Maybe I should walk with a cane.     - My left leg seems to drag behind me. My cat is happy and asleep next to me. She rebelled while I was in the hospital pulled the papers from the desk.           and chewed things and created general disarray. Maybe I am cranky from not enough sleep.  - which comes to me in morphine dreams.      so believable that I wake up in a rage        or weeping the loss of some friend or family member. The home care professional always leaves me     in a bad moo...