Confections For Cats

My thoughts and Mathew’s experience with nutritional considerations while going through chemotherapy. Before Mathew’s diagnosis, he had been a vegetarian. When he arrived at Moffitt, within the first few days, they suggested he make the decision to go back to eating meat because his body needed the nutrition and while some of his vegetarian friends said it is possible on a vegetarian diet, Mathew took the Doctors suggestion. Because the sarcoma was affecting his organs, his blood levels were either high or low in addition to his liver functions being high. On his own, Mathew made that decision. I know he spoke at length to his spiritual advisor and weighed everything the doctors had told him. He said it was difficult and distasteful in the beginning, but Mathew was a pragmatist and he trusted his medical team. One member of his team was a nutritionist. She would come around and gave us printed material on general nutrition, nutrition after chemo, and later food safety fo...

The first five weeks after Mathew was diagnosed with Stage 4 Desmoplastic Small Round Cell Sarcoma,  I was in typical caregiver mode, all the focus was on getting the medical information and seeing that everything was being done, all with the goal of getting to the other side, for Mathew to be cancer free and moving on with his life. But somewhere, right now I don’t recall exactly at what point, I realized that this was our lives. That the time we spent in hospital rooms, or waiting rooms or in the car traveling back and forth was our lives, our time together, a chance to make memories. I was in constant caregiver/warrior mode and at the same time, I learned to be in each moment with Mathew. We spent a lot of time talking. Talking about his wishes for end of life and his funeral. His observations on Bob Dylan’s lyrics. Ways to work around the neuropathy in his hands. That may be why this time is so vivid to me still.  Many things, other than medical care went on during ...

Doxorubicin for Desmoplastic Small Round Cell Sarcoma The “red stuff” Cancer, chemotherapy, and other treatments are scary enough on their own, but we found that there were certain medicines or situations that stood out as particularly frightening. As with many things during this time, our understanding of their full implications came in small doses. Some of these lessons came while we were at Interventional Radiology. -This is the place Mat had his port put in. -His biliary stent. -Every time its' position needed to be checked. IR is where minimally invasive procedures are done, such as placing a port or in Mathew’s case, all the procedures with his biliary stent and lung drains. They use imaging for these procedures, so every time Mathew had something done to his biliary stent or had the placement of it checked, he saw a close-up of his tumor.  “It’s all blown out in there, Mom,” He said one time. We went there a lot. In the beginning, I used to wait in the waiting r...

From The Notebook 3-13-14 (written by Diane) 1:30 Pain Team came in. Dr. Knight very happy w/how he looks.     - no changes to pain regimen. Texts between Mom and Diane Tell Mat if he wants any outside  food to let me know. I was thinking of picking up  some cauliflower, carrots, and broccoli from Golden Corral. Sent March 13 (1/2) Hey Mat suggested that I go home and said he didn’t mind being alone for awhile (working on paper work for next couple of hours). I  am starting to crash so (2/2) I’m leaving now. Danielle  will be here around 4ish. All docs said all is good and he looks good. Notes caught up. Rec’d March 13 I’m only 15 minutes out. Sent March 13 Perfect! Rec’d March 13 Continued From The Notebook (written by Me) 3:00 - here - massage therapist was here.  (part of the palliative team) worked out co-pays (will write a separate post about t...

Texts between me and Diane. He’s in the most pain I’ve seen in a while. Sent March 12 Why More?….just being moved around and port etc? Rec’d March 12 Took lots of fluid off of right lung. Sent March 12 Sorry I’m running a little behind, Danielle and Dan came over. I’m leaving now. Rec’d March 12 Ok Sent March 12 If Mat becomes overly sedated acting or very confused….let the nurse know. Sent March 12 Yes, she explained what to look for. Rec’d March 12 Did he do ok last night? Sent March 12 Was very stressed by chemo but did good. A tiny nausea but alerted nurse and meds helped immediately. Team came by…no new orders except phy therapy to come. Rec’d March 13 Help him get up and walk. Great. I am finishing laundry getting cleaned up. Then to post office and quick stop at my parents. Sent March 13 Arpie said to bring all medical bills to you.  Remember to ask me for them. Sent Ma...

From Mathew’s medical records. Actual chemo doses. 3/12/14 ETOPOSIDE  etoposide + sodium chloride 0.9% DOSE: 100 mg, IVPB Q 24 hr. Dose rate  555 mL/hr infuse over 1 hr IFOSFAMIDE ifosfamide + sodium chlorida 0.9%  DOSE:  1,900 mg IVPB, Q 24 hr, Dose rate  588 mL/hr infuse over 1 hr. MESNA I am not going to go over the doses because it changes with the day and the chemo being given. It continues to run after the last chemo. Again, it is to protect his bladder. 10 mg of Dexamethasone by IV to prevent nausea Also for nausea or vomiting: Ondansetron Prochlorperazine Promethazine There were other medications for the following: pain anxiety antibiotics itching (from high bilirubin) to bind the bilirubin (3 of these) stool softener diuretic acid suppression indigestion prevent blood from being too thin Imagine a soccer ball inserted into your abdomen, maybe it needs to be smushed around in ord...

First Chemo continued    3/12/14 From The Notebook written by Mom If nauseous can give more meds. Dexamethasone Zofran Chemo goes to all fast-growing cells including white blood cells. in 10 days white blood cells will be at the lowest point. -100.4 or higher is a fever -red blood cells can drop, typical to get a transfusion. AE - 5 days VAC outpatient Let Dr know if he becomes very confused or sedated. Mesna to keep the bladder from bleeding. At home: Neupogen - daily shot to protect against low white blood count After VAC  1 shot Neulasta Dexamethasone  - 2 times a day for 3 days VAC  Doxorubicin - can cause toxicity to the heart.                                - may cause neuropathy - let Dr know.  - constipation My brother, Hank was in Florida during this time to see his new grandbaby. He stopped to visit ...