Side Effects from I.E. Chemo

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 this)

4:00 Physical Therapist - good work out.

8:30 pm started chemo Etoposide.

8:50 checked stent and stitch

10:00 pm started Ifosfamide

**strong hiccups and neuropathy in fingers

Thorazine 25 mg for hiccups - made Mat shake and feel funny but stopped hiccups.

3-14-14

1:30 am

every time Mat gets out of bed hiccups.

Ativan - helped and he almost fell asleep but then got up to use the bathroom.

Hiccups again!!

** possible drain put in lung on Friday

Tough night until 1:30 am because of the hiccups. But when he finally fell asleep he slept until 6:00 am when the nurse had to take blood - he had a short conversation and when I came back with coffee he was asleep again!

Short conversation was concerning blood type and possible transfusion because his hemoglobin is down 7.4 - should be 8 or more.

Good news - his bilirubin is down to 4.1.

I was under the impression that the doctors expected it to go up with chemo.

For chemo - when he gets the second one Ifosfamide - you need to stay aware of what is going on with him.

8:45 signed consent for blood transfusion

Ate a good breakfast

2 cereals milk sugar 4 oz

prune juice 4 oz

OJ with medicine 8 oz

water w/pills 4 oz

biscuit w/jam

9:50 Chelsea from Physical Therapy came in - Mat said he wasn’t up to it and fell asleep mid-sentence.

**He should improve after transfusion.

10:00 Dr. Creelan and team - no more Allopurinol (this had been prescribed at Zhills hospital)

Prefer to cut back on Ativan

No more Xanax and sleeping pill

streamlining medicines

Benadryl only as needed for itching.

He needs to continue to get up and move around to prevent bed sores.

Dr. Lawrence (pain team) says Mathew needs to sleep off extra meds

1:00 for pigtail into lung

blood transfusion today

haircut (this is the actual day of the haircut. You can go back and look at the pictures and see how worn out and medicated Mathew is at this point.

ICE CHIPS ONLY FOR MOST OF DAY

11:00 - still sleeping

(Diane writing now)

Transfusion set for 4 hour drip (11-3/ 3- 7 approx)

**Sent lunch away. I understood there was to be no food or drink until after the procedure. When PT came in Mat asked nurse if he could eat and was told yes ——Big Mistake!

shaved head
-Did PT
Jake visited
Dr. Knight came in.
Social Worker came in (dropped off forms)

**postponed lung drain and port because ate some solid food after he was told he could. Grrrr!

Diane writes

“There is no room in my life for negative thought or emotion. I will be optimistic, energetic and solution oriented. I will give honor, glory and respect to all that I come in contact with. I will be open, honest and sincere - relying upon God for all strength and understanding. May all that I do glorify Christ.”

About this Blog, A Journey Through Sarcoma

Confections for Cats, A Journey through Sarcoma is a chronicle of my son's journey through Desmoplastic Small Round Cell Sarcoma. It is intended to educate and inspire by using Mathew’s thoughts and feelings, dreams and fears through a variety of mediums; art, music, and writing. Through factual experience, what we learned and what we wish we had known. Mathew’s desire was to give meaning to his journey and in the process help anyone else on a similar path. The last possible explanation in my mind for my son’s health problems was cancer. Even the words “the scan shows a large mass” didn’t lead me to conclude cancer and when the cancer diagnosis was confirmed, I still wasn’t prepared. My Mother is a breast cancer survivor and my sister Elizabeth passed away three years after her breast cancer diagnosis. I thought I knew what cancer treatment and living with cancer looked like, but none of us could imagine or be prepared for how all semblance of routine and normalcy had alre...

When a Cancer Patient Has a Medical Emergency

3 Days in the DRC, Part 1 If you haven’t read my first post about the DRC at Moffitt and how it works, since Moffitt does not have an ER, you can read about it here. https://confectionsforcats.blogspot.com/2018/04/neutropenic-fever-after-ie-chemo-and.html In summary, the DRC is where an existing Moffitt patient is directed to go if they have a medical emergency. Usually, we would be there a few hours or overnight (since we arrived at midnight or shortly afterward) until they had a room for Mathew on the ward. This particular visit Mathew stayed in the DRC three days. As mentioned in my other post, the DRC has maybe two rooms with a bathroom; otherwise, one bathroom for about a dozen patients. In Mathew’s case, a patient with a lowered immune system. This time Mathew was in the room furthest from the bathroom. When inpatient, we had a routine for getting him to the bathroom. First, he needed the IV unplugged (often quickly) and most times, I ...

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out. I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL 5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. - I’ve been thinking about dying a lot lately. I don’t know wh...

Confections For Cats

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