Now We Are Home, We Need a Routine

The first few days at home Mathew spent a lot of time on the couch. He was still too uncomfortable to lay flat on a bed. He also had trouble sleeping.

He had been loaned a laptop (his had broken before his diagnosis) and he was able to spend time on social media, stream TV shows he thought would make him laugh and listen to music.

The loan of the laptop (from his step-sister’s Dad) was one of the things that made a tremendous difference in his last year of life. My sister Kathleen moving him and his cats into her home was another.

So many people supported us in many ways. Some offered to run errands, even run down to Moffitt to pick up medications for us. Cards with messages of love and support. Money, gas cards (we racked up the miles going back and forth), grocery gift cards and many more I will mention as I go along.

In fact, one of the first things Mathew and I did was start a list in order to start writing thank-you cards. For some reason, we, and especially I, thought we could somewhat continue with our lives during all of this. After all, we all know people going through cancer treatment that continued to work, go to school etc. We would find out, that this journey was our lives.

One doctor at Moffitt told me Mathew’s treatment wasn’t much better than the treatment for leukemia or a bone marrow transplant. And I knew from seeing my sister Beth go through the bone marrow transplant that you have to remove yourself from the rest of the world. The same doctor also told me that for Mathew’s cancer treatment, having a full-time caregiver was imperative.

So, we hit the ground running with that first trip home. Mathew was catching up on his journal, making plans to work on his writing and his music and to keep up with the thank-yous. I was disinfecting the house each day. I would vacuum (because of the cats and my sister had dogs on her side of the house), wipe down and clean everything in the bathroom. Door knobs, toilet handles, faucets anything that Mathew would touch. I used the second bathroom in the house.

The same throughout the entire house. Anything Mathew would touch, door knobs, light switches, TV controls, etc. Cleaned and disinfected.

My sister, Kathleen, was managing an antique shop in downtown Dade City. Top Drawer Antiques. The owner of the shop, Jo Larkin, gave Kathleen permission to set up dealer space in the shop where anyone could donate items to sell as a fundraiser for Mathew. Many of the antique dealers in the shop participated. This went on the entire time. Her husband, owner of Bob Larkin Construction sent an employee over to install a handrail in the shower so Mathew would be safe while showering.

We even imagined we would make handmade thank-you cards! I know we sent some out and I did more later, but I still have a box of cards I need to respond to, it’s been three years.

One of the things Mathew decided on, was the picture of himself he wanted to use, maybe put it in the shop along with the items that were for sale. This is the picture.

Later he would take another and add Penny Cat, which is the photo he used when he created his Confections for Cats Facebook page.

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

Search This Blog