The Rollercoaster of Chemotherapy Fewer Highs and More Lows

TEXTS BETWEEN ME AND ARPIE

Mat sees Dr. Reed Thursday at 9 and then

at 1 he goes to have biliary stent changed

to a larger gauge. We had to reattach a bag

this morning.

Sent May 12

I have Dr's appointment myself Thursday
will call after and see if you are still

with Dr. Reed.

Rec'd May 12

Okay

Sent May 12

May 15th

As usual, we went to blood draw first.

Gold valet. There’s always a lot of traffic, vehicles and foot traffic. Drs and others moving between Moffitt and the Stabile Reseach Building.

8:15 blood draw. More than likely, the therapy dogs were in the blood draw waiting area.

This was one of those places where we met other caregivers and patients and heard other stories/journeys. The high wall of windows gave it an open, cheerful atmosphere. At least for me on the surface.

If we had time, Mathew and I stopped by Starbucks there in the hospital and each got a coffee and then headed up to the Sarcoma Clinic. A few times we sat at one of the tables there and enjoyed our coffee with a snack.

This day, the Sarcoma appointment was at 9 o'clock.

The appointments with Dr. Reed followed much the same routine. Mat was weighed and we went into an office/exam room and sat in two chairs near the door. We usually didn’t talk much. Mathew had his journal out in order to take notes. I kept myself busy, reading and trying not to worry.

Dr. Reed and his nurse Kathy would come in. Dr. Reed always greeted us and shook hands. He would have printed blood work results to give me since we had already established I wanted to look at all of the numbers and Mathew wanted to talk with the doctor.

The two of them discussed a variety of subjects. Sometimes the cancer. But more often than not, Mathew’s writing, his music, and what he was doing with his time.

Mathew wore quite a few interesting shirts and Dr. Reed would comment on them. One time one of the members of the infectious disease team told Mat, “You have the most interesting T-shirts.”

This particular day, as Dr. Reed was talking to Mathew, his beeper went off. He glanced at the number on it and called an extension. It was the lab. Mathew’s counts were critical.
I’m still amazed.

Blood was drawn approx 8:15 and an hour later they have all the results and the permutations done to calculate the white blood count and are notifying the doctor.

Is everything ok? Mat is not

responding to my texts.

Rec’d May 15

Mat is being admitted. Neutrophils critically

low. Still will have a procedure at 1.
No room yet,
in DRC.

Sent May 15

Where are you in the hospital?

Rec'd May 15

DRC. Same hall as the pharmacy.

Sent May 15

Be there in a minute.

Rec'd May 15

He’s having stent checked right now

Sent May 15

It is blocked again but they can’t do anything

about it because they gave him blood thinner

this morning even though I told them he was

scheduled for a procedure today. Geez.
Sent May 15

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 why it has hit

The Chemo Bell at Moffitt Cancer Center

Bells ring. Bells, chime, toll, peal, resonate and resound. Bells foretell, warn and celebrate. The Chemo Bell The Survivor Bell Cancer Centers have one or several large bells, each with a large clapper. They are mounted on the wall and when a patient receives their last chemotherapy or radiation treatment for cancer they ring that bell. Mathew and I heard the Chemo Bell in the Infusion Center at Moffitt ring one time. Early on our journey. Everyone clapped and cheered. Mat and I stopped and looked at the bell that day and I thought at that time, it was a possibility for Mathew. Bells have a vibration. When a chemo bell rings, when a person survives cancer (even if it’s for a short time) they resound for the rest of us. Their survival reverberates and gives the rest of us hope. I found another chemo bell on the 5th floor at Moffitt, in the hallway, past the patient rooms. Next to the chemo bell was a copy of a photo of a patient surrounded by loved ones

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain. We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If any big pr

Confections For Cats

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