Thursday, February 28, 2013
More Mobility
Ro has been much more able to get around. He can do stairs, take out the trash, and today he even drove himself to the store. I was surprised how protective I felt. Of course he can drive by himself, I had to remind myself. But, this afternoon he started languishing. He didn't want to take a nap hoping that he would sleep longer at night. I think sleeping when he is tired is a great luxury that he can enjoy right now.
I played Scrabble with him today because I know how much he loves it. I am not a bad player, but when I play against him or MariLou or his Dad, I feel like English is my second language. We didn't keep score, but we both know he creamed me.
I am a little embarrassed to include this note of compliments from Roland, but he asked if I would. See how sweet and appreciative he is!
"A quick note from Roland:
A lot of good things have come from this blood clot/cancer episode in my life. One is my increased appreciation for Shauna. I’ve been home when kids come home and have seen what she does every day for them. On top of what she does every day, she now has been driving me to the hospital daily and sometimes to St. George, and everywhere else I’ve needed to go. She makes the meals. She helps make sure I am eating and drinking enough—even though I’ve been extremely picky about what I take in. She arranged for the children to take turns being my cheerleader. She makes sure I am taking my medicines properly. She has taken copious notes about everything I do and every way I feel every day. She has maintained this blog for those who really care about what is going on. She gives me injections every morning and night. She stays on top of bills and most financial record keeping. She is more beautiful than she has ever been. She is the best communicator with friends and family that I know. She likes to be with me. She is pretty much everything to me. I feel so lucky to be married to this amazing person."
Tuesday, February 26, 2013
PET Scan Second Opinion
Monday, February 25, 2013
Our Wheelchair Walk
Sunday, February 24, 2013
Chicken and the Mole
Friday, February 22, 2013
Our New Game: What Will the Picky Eater Eat?
S: How about some apple sauce?
R: Nah
S: Can I make you a smoothie?
R: Uh, well, OK, but no citrus, and no berries and...
S: How about a grape juice slush?
R: Nah
S: Something with milk?
R: If it is skim milk.
S: With ice?
R: OK as long as it is blended well.
S: Anything else in the smoothie?
R: Uh...
S: How about something sweet like honey?
R: OK, honey and a little peanut butter.
S: Got it.
This is the game for every time he eats. What do I think about this? I LOVE it! Finally after all these years I know exactly what he wants to eat. (heart smiles) The blender has been his friend. (puree soups) He has also taken a liking to S. Pellegino water which is so funny to me because it is so NOT Roland to have "special" food or drinks.
Because of his selectiveness and his anti-nausea medicine, he has felt the best digestively today.
Thursday, February 21, 2013
Adventure Beach
When we lived in Saipan, our house had a jungle behind it and beyond that was the ocean. Roland decided to hack through the jungle with a machete so that we could have a trail to the ocean. This took months to accomplish. He marked the trees so he would be able to find his way home after each day's journey closer. One day he invited me to accompany him. It was exciting to see all his hard work and enthusiasm for his project. When we reach the point where he left off, he showed me how he wielded the blade and marked the trees.
Then, the jungle was opened and together we saw the splendor of the ocean. He didn't know at the time that this would be the last day of labor and we would have this experience together. We continued on to the very small beach which gave us access to the ocean. Later with the children we named it "Adventure Beach". We had many walks through the jungle to Adventure Beach.
This recent news which I am trying to ignore reminds me of Adventure Beach. There was a rocky coast line where we would sometimes explore and find hermit crabs for hermit crab races.
Fortunately no sneaker waves came to Adventure Beach while we were there and after we learned about them, we took precautions to prevent this possible danger.
I was not as prepared for the sneaker wave yesterday. I had almost forgotten that we are climbing a tough path. I was seeing all the beauty of the hike and appreciating the help we have been receiving like Roland's clearing the path with the machete for me. Today I am clinging to the oncologist's words of encouragement and to the comfort of prayers on our behalf. Roland reminded me that we knew all along that something could go wrong, but I was not in that headspace. This might be a good example of how we think differently. He is taking the news much better than I am.
Roland is starting to feel a heartburn feeling deep in his esophagus. (He takes medicine for this) Non-acidic fruits or milk sound good to him. He has restless leg symptoms so he doesn't sleep through the night. He makes up for it during the day. When he is not sleeping, he has been organizing files for the book he has wanted to write for years. Today he started to hear off and on ringing in his ears (Tinnitus) which is a side effect of the Cisplatin Chemotherapy drug. This can be permanent, but we hope not. About every ten minutes when he is awake, he tells me how much he appreciates me. He can stand or walk with his foot turned out for about sixty seconds at a time before he needs to sit down and elevate his leg. This makes him more independent.
Wednesday, February 20, 2013
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.
Tuesday, February 19, 2013
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.
Sunday, February 17, 2013
A Walk to the Park
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.
Friday, February 15, 2013
My Hot Husband
Here he is being "hot", relaxing with a sugar free drink and a hot pink wristband.
Thursday, February 14, 2013
My Valentine
My Valentine |
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." |
Wednesday, February 13, 2013
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!
Tuesday, February 12, 2013
Mardi Gras
The Patient Patient, Waiting for Chemo |
The Puzzle in the Waiting Room |
Monday, February 11, 2013
Chemo Adventure Begins
We have so many things to be thankful for. A friend in our ward family told me when we first found out about this "adventure" that as we hike this difficult path that there are many in the ward who will want to scythe the way. I had no idea how true this statement would turn out to be. Our neighbor to the West regularly snow plows our driveway. Two others have lent us their cars while ours is in for repair. (Someone drove it to the shop for us.) Cookies on plates arrive at the door. Delicious home cooked meals have been brought. Cards, flowers, gifts and drop-in visits to bring cheer. I feel like I have so many phone numbers of family and friends I could call for help with whatever I might need at any time of the day or night. My heart is full of love for these wonderful people.
Saturday, February 9, 2013
Friday Night Entertainment: Sledding?
Thursday, February 7, 2013
The Seven Week Adventure
Once I got him comfortable, I looked ahead to dinner for the family. I looked in the fridge and asked myself, "What am I going to make for dinner?" I knew I needed to pick up a prescription and some other errands and wouldn't have much time. Within 10 minutes the doorbell rang. It was a delivery guy with hot pizzas from Madison S. with a sweet note on them. She totally called that one! Thank you Madison especially from all the hungry teens.
The new Chemo plan is seven weeks long. That is one week for each of our children. He wants to dedicate each week to a different child in age order. February 11- 17 is Tikla and Austin's week. Feb. 18 - 24 is Skylar's etc. He didn't ask for this next idea, but I think it would be nice if during your week, you could be his cheerleader and spirit lifter and encourager (It doesn't need to be fancy: send him an email, call him and sing him a song, or whatever your style is or whatever feels right)
I wish he could feel a little better before getting started on something that is going to make him feel terrible, but maybe this way he won't notice a big change.
Wednesday, February 6, 2013
We Have a Road Map!
Tuesday, February 5, 2013
Hat Trick Day
Cancer at Roland's stage with Chemo, Radiation, and Surgery has shown the same results as Chemo and Radiation without surgery, so why cut on him?
We thought the painful DVT (Deep Vein Thrombosis) in his left leg could possibly be cured with surgery to remove the clots, but the vascular doctor said he has seen this kind of thing before and better results have come from just playing the waiting game (two to three weeks!) while taking blood thinners (now with increased frequency). He said it would be even more painful to have the surgery and could result in further damage and clotting. That was convincing enough for Roland who is nauseous from the pain when he has to walk even with crutches and pain medicine. He is wearing a compression stocking in a lovely tan color the length of his whole leg.
Then we got painfully back in the van and to the radiation doctor. He explained the side effects we can expect. I cried. Roland had a "whatever it takes" attitude. Tomorrow we will do radiation simulation therapy where they map out and mark his body so the radiation can be directed to exactly where it is needed (lung tumor and lymph nodes) and not to where it is not needed (heart, spine, esophagus).
It is looking like the road map is Chemo and Radiation together, but it might have to wait until the DVT is reduced. Tomorrow we will meet with the oncologist again and we hope she will give us an idea of when this will all start.
I think he needs stronger medicine, but he rationalizes that it is only painful when he has to move around. Hmmmm?
I asked him what he wanted to do tonight to distract him from the pain and I suggested Scrabble, or a movie at home or something like that. He said, "What I really want to do is help the substitute by finishing making a quiz for my students to take tomorrow and correcting papers." Wow, we really think differently. That's OK. I am comforted that he won't be teaching tomorrow.
My favorite part of today was washing his hair, bedside this morning and massaging his feet while waiting for doctors. I think he was happiest during those two times of the day.
Sunday, February 3, 2013
Looking on the Bright Side
I received a letter of encouragement from my brother who suggested that Roland tell the stage 3 cancer to exit his body, stage right! (or left) :)
We have had many offers to help us out. People have brought meals or cookies to our home. They seem to arrive on days when I am so physically and emotionally exhausted that the plan for dinner would have otherwise been make your own PB and J. It is a great comfort to have a good meal for our family when I don't have the strength to prepare something. Not to mention the relief of the "care taker" being cared for. The children are also amazed at the kindness.
Tikla brought cute "Ground Hog Day" chocolate cupcakes to celebrate February 2nd. See the little almonds for ears. There is whipped cream under those shortbread cookie toppers.
Paul, Lisa, and Christian visited and brought their cheerfulness and a health drink we can make called Kefir.
We have so appreciated the visits and calls and general outpouring of love and concern. Truly prayers are being answered in surprising ways big and small.