www.cancermonster.net

7:45a
It has taken these four days to 1) recover to a small (not even close to fully recovering! Lol) degree from the trip; 2) recover from the shock of what was prepared for us here in Florida; and 3) get my first couple appointments at H. Lee Moffitt Cancer center out of the way. It has been a tough week.

Believe it or not, I didn’t take one picture the night we pulled up to our new house. It was so overwhelming just pulling up to the house and hugging and crying and laughing. And then the tour of the house . . . Furnished and decorated. Dinner was served and I was blown away over and over.

I just kept saying, “It is so nice that ya’ll came over to my house!” (Back in the land of “ya’ll”. . .) I couldn’t lift a finger for a fork. “Hey Lisa, how long is the service included with this house?” lol

And then one by one, the family left and Dan and the kids and I were Home Alone. “AHHHHHHHHHHH” Each of us wandered a new path around our new home. The girls fingered the fuzzy pink pillows and blankets, the dolls and clothes they found in their room. Robbie found marbles and books and toys for boys in his room. There was a bag of clothing in his closet and he loaded each piece into the dresser he found. I watched from the hallway. I stored the images in my heart for safe keeping.

We had planned to live in the motorhome when we arrived. We would not have complained, any of us. We expected a lot in an RV park. Watching the children bouncing around their rooms instead of bouncing around in the back of Clyde . . . I will never forget it.

And there is my bed! My sister, Anita, sold her jewelry to buy me a mattress made from the wispy part of a cloud. She and her daughter-in-law, Kim, made the mattress shop guys bring out every king size mattress in the place for them to try out. “Hmmmm, not quite soft enough. Can you get that one up there, 46 feet in the air?” They did a fine job with the picking. This sucker is two feet deep! And the frame is wrought iron swirls. When I climb up (and I do have to climb) on the bed, I sink into it and my pain fades into the sheets and deep into the sponge. I don’t know where it goes from there. Maybe the pain ends up where ever the socks go when you wash them.

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9:00p

This is a prime example of why I haven’t written a long well thought out days entry. I started this morning at 7:30a and this is all I have for the whole day. My mom called a little while ago and I told her that I got a lot accomplished today. Then when I was finished telling her all that I did, I stopped to think. “I didn’t get a lot accomplished, did I?” lol I put away more things from the motorhome. I had a nap. I went with Uncle Pappa to register the van. I had a nap. I . . . I . . . I seasoned the fish for dinner. (Dan is doing pretty well, but I just don’t trust him yet with fish . . . yet.)

I need to get caught up here. Maybe I should let you know what happened on Monday at the new hospital. That seems like the logical starting place.

Back at Oregon Health & Sciences University (OHSU), we were awed by the number of hospitals and schools, the departments and specialties represented. OHSU is virtually a city unto itself. The number of people that live and work at and around the campus eludes me, but I have lived in towns with less population.
H. Lee Moffitt Cancer Center and Research Institute is a different kind of impressive. Opened in 1987, the Moffitt Campus includes 1,648,869 square feet of hospitals, research and education facilities all dedicated to the treatment and study of Cancer. Each and every patient at Moffitt is battling their own CancerMonster. It is humbling to be a new part of the community, to say the least.

On Monday, Dan and I drove the two hours from our new house in Cape Coral to Tampa Bay, wondering the whole way what we crossed the country to find. What we found was compassion. From the staff. From the fellow patients. From the Valet Parkers even. (Valet parking is the standard there. I tried to imagine what it would be like to open each door and greet people from every walk of life, fighting for that walk. Fighting for their lives.)

Our first task was to navigate the halls to find the Sarcoma Clinic. Then the new patient paperwork required a bit of navigation as well. We then sat with a dedicated and caring young woman who helped us through more paperwork for the disability and Medicaid coverage.

Back at the Sarcoma center, we were called in for the triage portion of our visit. Vital signs. (Good to know that I am still showing signs vital-ness!) This fella was a hoot and put us at ease quickly. The nurse was next. I felt like I had always been a part of her world. Everyone was kind and helpful and down to earth.

Next we met my new doctor. Dr. D is a very funny vibrant woman that confesses to get attached to her patients. She listened. We listened. We asked questions and got answers. Some of the answers were “I don’t know” and “We will do some tests to find out.”

One of the things that she wanted a test for no one told us about at OHSU. I need to back up just a hair. On Sunday afternoon, as we were floating down the sandbar we call Florida, I finally read through some paperwork that was printed out for me the day before we left Oregon. The packet included the discharge summary, the details of the muscle flap surgery and the MRI report. If you remember, when we saw Dr. H at the pre-op appointment, the Chest CT was on the screen. We all saw the spots in my lungs. The Doctors and Dan and I discussed what that meant to the surgery and we decided to go ahead with the plans already set in place.

We never got to the MRI scans.

When I read the report myself, I was not prepared for what it said. I read it again to Dan. It didn’t get any better. Seems there are new “high-signal intensity” lesions in the right hip and femur and the iliac bones. These spots, like the ones in the lung, were not there in the last pictures. A total body scan was suggested to determine if there is osseous metastatic disease.

. . . spread to the bone . . .

This MRI was done on October 1st. It was November 11th. I didn’t know.

It makes sense of the pain I have been having in my right hip. I attributed the pain to lying on my right side instead of my new left butt. The pain increased as we neared our destination making it harder to walk and harder to sit in the front co-pilot seat in the motorhome. We were just hours away from Cape Coral when I found the report. I waited until the homecoming party was over before telling anyone. And then I put it out of my mind.

In fact, I am not sure who in our family, on either side we told. (I’m sorry.) I don’t know what change this would make in my coming treatment. Chemo covers the entire body. Hips included.

We discussed it next with Dr D. She said that the impressions of the MRI didn’t promise what we thought. She ordered a bone scan.

She also ordered a MUGA scan. I have no idea what “MUGA” stands for, but it is a scan of my heart. The Chemo is going to be rough on my ticker. It needs a good once-over look-see. I am also having a CT of the chest, abdomen, and pelvic regions. (The bone scan was done on Wednesday. The other test will be done this coming Monday.) And as for the pain, she increased my extended release Morphine and added some instant release morphine to take for breakthrough pain instead of the Vicodin or Percocet. She said taking just one medication, although different release modes, would be better for my system. (So far, the change is doing me good.)

Dr. D was also concerned about the fluid in my back where the donor muscle was taken for my new butt. She sent me to Moffitt’s version of a triage clinic. They called in a sarcoma surgeon to take a look. Instead of using a needle to remove the fluid, which would have to be repeated as the fluid filled in again, he wanted to have radiology guide in a new drain. The more often a site was opened, the more chance of infection. I am still waiting for that procedure to be scheduled.

It was late by the time we left Tampa. By the time we reached our new home, I was spent three times over. Bed! My bed that is softer than a bunny’s fur was a welcoming sight. I climbed in and cast off the pain that had me in tears for the last hour of the ride. But the first day of Moffitt was done. Many more to come.

It is now midnight eastern time. Way past my new bedtime. Tomorrow I will tell you about the rest of the week.

If I can remember it! Lol