PET Scan Results Are in

For some reason, I haven't really been thinking about the scan results.  I have just had a good feeling about it and the current treatment plan.  So when the oncologist showed us the scan on her computer, I was surprised to hear what she said.  The radiologist in St George described in the scan notes areas of "concern" indicating stage 4 (In lung cancer this stage is incurable).  I didn't cry.  I didn't really react at all.  She disagreed with the notes.  Ideally the scan should have been done prior to the treatment, but since we didn't have pre-approval then, we had to do it now.  She didn't see anything unusual.  She attributes what was described as areas of "concern" to Roland's body reacting to the Chemo already in progress and the PE (Pulmonary Embolisms or blood clots in his lungs).  She wants to proceed with the treatment plan for a cure and re-scan a few months after treatment when the Chemo is completely out of his system. She is also talking about two more rounds after these first two rounds.

The radiation doctor has yet to weigh in on this.  He may want to discontinue radiation if he thinks it is stage 4 because radiation is ineffective and unnecessary at stage 4 since it is not curable anyway.  If Roland is at stage 4 they will do what they can to make him comfortable and radiation is not comfortable.

Since leaving the hospital, I have had a little cry about this, but I take comfort in knowing we are doing something to treat him right now.  I can't know if it is working yet, so I am not going to think about that.  It has been a tough day and I am not really wanting to talk about it much.  I prefer to keep my mind back in the stage 3a days.  Since the oncologist is there, I am trying to be too.

On a brighter note, Roland looks healthy and has color in his face again.  He even walked into the treatment center instead of his usual wheelchair travel.  His mind is clear and though he is still tired most of the time, he is happy and quick witted.  The doctor is impressed with how well he is taking the medicines.  She reiterated that she is hitting him hard with Chemo.  Roland is tough.

Round One Complete

I am getting good at wheelchairing Roland.  We have a system where he hits all the auto open door buttons.  He had almost no puzzle time before being taken to radiation  which will continue for six more weeks.  It is so exactly directed that his side effects have been inconsequential.  We hope that will continue.

The nurse had to try to find a good vein.  The one on his hand from Friday's PET scan suddenly got puffy and bruised this morning, so that wasn't an option.  She tried the other hand, but it didn't work at all.  That was painful.  Now he has a matched set.  Fortunately today's IV only needed to last for today.  The location was close to his hand, but on his arm.  The only trouble was that his hand felt cold the whole time and when he dozed off he dreamt he had "chicken hands".  He got his last dose of Chemo.  He looked so pale and listless.  He has had a lot of rest today. 

His hair looks a little thinner.  We thought he would be losing his hair for sure soon, but we have since learned that he might not.  I guess the plan to let the boys give him a mohawk is on the back burner.

Round two is March 11th, but for now he is enjoying a break from that daily "toxicified" feeling.

A Walk to the Park

His thigh swelling is completely gone, but he still has one "fat calf".  There is considerable pain behind his knee when standing or sitting with this leg hanging down.  Nevertheless he has become considerably more independent.

There is a park about three blocks from our house.  All the kids went there to play some "knock out".  (This game with two basketballs has other names.) 

Roland wanting to get some exercise and enjoy the beautiful sunny day decided to take some pain medicine and go to the park and watch on his day off from Chemo and radiation   I thought he wouldn't want to stay long and I wasn't sure how strong he would be.  We drove the first two blocks and he only needed four lay-on-the-sidewalk breaks while walking the last block, but he made it.  Since the snow had only recently melted, lying in the grass seemed like a bad idea.   The benches were also wet.  He opted for the dry concrete path.  That looked miserable.  Tikla and I went back to the house for comforts: a folding chair with a foot rest, a warm jacket, a down comforter, a beanbag chair, a sleeping bag, snacks, and drinks.  He enjoyed the fresh air and the entertainment. 

The pain medicine didn't help.   He rode back in the van and had a hot bath to take off the chill when we got home.

My Hot Husband

After Chemo and radiation, we drove to St. George for the PET scan.  It's a good thing we were early because we first went to the new hospital, but our appointment was at the old hospital.  I got to stay with him until after the radioactive isotope was in his system at which point the nurse said I needed to leave because she referred to him as "hot" (meaning radioactive)  Roland, not missing a beat, interjected, "finally!"
Here he is being "hot", relaxing with a sugar free drink and a hot pink wristband.

My Valentine

My Valentine

He gets his peripheral IV wrapped after all the medicine is drained into his veins.  Today as a Valentine "treat", he got a red cover to hold it in place.  His nurse was very attentive and sweet. We found out that the PET scan appointment was changed, but it is still tomorrow, so the great nurses were able to rearrange everything to keep him on schedule for Chemo and radiation.  He is still feeling awful. He is losing weight because he doesn't have an appetite.  His water tastes terrible. He can only eat meat and veggies today in preparation for the scan tomorrow.  I suggested we float some cucumbers in the water to change the flavor since we can't flavor it with fruit, but he didn't like that either.  He thought bell pepper strips dipped in peanut butter sounded good, but when he tried it he said, "Do we have any celery?"  We did.  "I think celery would be better and I can eat these peppers without peanut butter."  Obviously his taste buds are changing.  He can't believe how slowly this week has gone.

A mystery envelope arrived at our door from a kind friend who said someone else gave it to him to give to us and he didn't know what it was.  It was a gift card for gasoline.  Yay!  Just in time for our trip to St. George.  The Decker's left a treat for Valentine's Day on our front porch.  The "Valentine Queen" came and brought surprises for all.  Roland made me this sweet card.

The fine print reads, "This is a picture of my heart."

The adult kids video-called us and opened their Valentine box with us looking on.  We feel so loved.  They are coming this weekend and Austin and Tikla are going to take care of all the meal preparations.  Wow!  

Clearly the blessings keep stacking up and we are so appreciative.  My sickness that I am definitely NOT having is already going away. :)  That's convenient because tomorrow is going to be a LONG day.

Green Light on PET Scan

Look what arrived in the mail from Aimee and Eric's family with a sweet note.  Thank you!  Isn't it great to celebrate Valentine's Day with homemade decorated cookies!  I put the package in the fridge until after dinner then when I put them on a plate, I noticed that one of my kids must have snuck a nibble.  :)  Oh yeah!  They are irresistible.

Today we got the go ahead on the PET scan.  It seemed too late to me, but the oncologist said to get it ASAP.  So Friday is the day.  This means another trip to St. George and no carbs or exercise tomorrow.  Since Roland doesn't really want to eat anything or move at all, this won't be a challenge for him.  Even though he doesn't want to, he IS still eating. In simple terms, the contrast he will drink for this scan is sugary and the cells that like sugar the most are cancer cells, so this contrast will show up in higher concentration where the sugar is and therefore where the cancer is.   To help with this process, he cannot have sugar already in his system.

He hops/limps around now holding on to the furniture and walls.  He can't fully straighten his left leg without a lot of pain, but he is trying to stretch it.  He deemed the crutches unsafe because he is dizzy and might fall and since his blood is thin, falling poses the potential for possible internal injuries.  He is a little grumpier than I am used to, but he is normally so cheerful that it is easy to handle.  Even though he feels pretty terrible, he still finds ways to thank me and appreciate me. He is supposed to drink a lot to flush the Chemo out of his system and to protect his kidneys.  I thought he might like it if I made some watermelon/mint/ginger in the blender.  It sounded good to me and I know he loves watermelon.  He thought about it and decided he would rather have a hunk of watermelon and a spoon.  I complied, but watermelon isn't in season, so it wasn't a nice sweet, crisp one as he had hoped, so he let me blend it into a drink. He wanted a touch of cinnamon and I sweetened it with a little white grape juice concentrate.  Winner!  Whatever it takes to keep him drinking.  He is totally off pain meds.  When the oncologist heard this, she told him to get back on them so he can walk.  She wants him to exercise his legs.  He isn't very motivated.  Hmmmm?  I am thinking of ways to encourage this.  I think some simple slow dancing in the living room might be just the thing.  That way if he gets dizzy, I can be his support. Any other suggestions?

I am NOT sick because I just can't get sick.  I just have a little scratchy throat and a sniffle that is going to be gone with this very reasonable headache in the morning because I am drinking lots of fluids and washing my hands frequently.   I use the "germ machine".  (That is Roland's term for the pump dispenser of hand sanitizer.)  I was able to rest today because my visiting teachers brought over a meal--make that a feast--for the family.  What a relief!

Mardi Gras

The Patient Patient, Waiting for Chemo

Roland is sporting a Mardi Gras necklace, but he doesn't look or feel like celebrating.  His main concern is that we are not thanking all the nice people who have shown their love.  He received a hand made lap quilt in his favorite colors.  He would love to thank whoever donated it to the cancer center.  He got up this morning with a "to do" list, but he is just so tired that he doesn't ever get to it.  His leg is feeling a lot better.  He doesn't crawl or drag his legs behind him.  Instead he uses crutches.  The radiation doctor showed us the plan.  It looked pretty complicated on the computer screen and managed to avoid the parts of his body that don't need to be targeted.  He even said that Roland wouldn't have the side effects of tender/irritated skin because his skin wouldn't be too exposed nor dry mouth.  He can expect to have a sore/inflamed esophagus, since it is so near the nodes.  This means he will need to eat soft, cool foods for a while.

The Puzzle in the Waiting Room