Confections For Cats

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 that

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 in and o

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 lying in a bed    

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 mood  -  I don’t know why. There is pain a lot of time and    things seem to irritate me a lot.

With the recent discharge from Moffitt, comes a new list of medications, and a new schedule. But I have the spreadsheet I had made and it isn’t as overwhelming as it was the first time. There is still the evening routine of the Pleurx lung drain, bill drain care and so on.  Mathew wants a watch cap to wear while he is bald and to keep his head warm. In Florida, March is already Spring and watch caps aren’t easily found. He would prefer one from his Alma Mater, St Leo University. We never did find one of those colors. Texts between me and Mathew Do you know where my beanie hat is? Rec’d March 25 No, must be there somewhere. Look in bedroom. Sent March 25 You’ll have to find it. Took it to hospital. Rec’d March 25 Ok Sent March 25 Also, can’t find alcohol wipes. Rec’d March 25 Look in box in bedroom. Sent March 25 K. Fell down, feeling weak. Don’t know why. Sore maybe from car ride. Take

There is no time to take a breath or relax. There will be no routine, only we haven't realized that at this point. No time to make a plan for keeping everyone in the loop. As I have mentioned before, I needed a lot of help but I didn't know what type of help to ask for and it was constantly changing. One thing would have been a better way to get information to family, friends, and well-wishers. I didn't have time to figure out a call tree or text message tree. But I am certain if I had asked Dan and Danielle or Diane to work it out for me they would have, I just didn't know to ask. So that would be my caregiver tip for this post, set up a message delivery system early. Not only were there times when I didn't have time to send or reply to everyone, but there were places at Moffitt where receiving calls or texts was next to impossible. Texts between me and Diane Going home this afternoon!! Sent March 25 Oh wow….very cool! Is there another