Chemo Adventure Begins

Day one of Chemo included lots of precautionary meds to counter nausea and unpleasant reactions. It took about five hours.  The infusion room had some recliners, but since his leg is still painful, he was given the only private room with a bed.  He liked that special treatment.  He feels a little woosy, but so far so good.  He has noticeable improvement in the left leg.  The swelling has gone down. Unfortunately the muscle mass in his right leg has also noticeably decreased.  He has reduced his dose of pain medicine, but it is working.  He is thankful for the pre-meds because they are working to counter the nausea, and headache.  He doesn't feel like he is suffering too much.  Foods are starting to taste like metal.  Tomorrow starts radiation therapy.  He will lose his chest hair from the radiation treatment, but he will lose all his hair because of the strong Chemo.  Jay wants him to learn the "Veggie Tales" song with these lyrics:

  I'm a bald bunny, don't got no fur.

I'm a bald bunny, brrr, brrr, brrr.

Jay also made and installed a hand sanitizer station at the garage entrance to the house, so the children coming home from school can disinfect.

Tikla shared this comic with him since he has done so much teaching.  Roland loves Calvin and Hobbes.

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.

Friday Night Entertainment: Sledding?

Tori came to visit and we wanted to watch a movie all together, but that meant we needed to get Roland downstairs.  He is not able to walk or use crutches because it is so painful when his leg is below his heart, so this is what we decided to do.  Coming back up, he held onto the railing and leading with is left leg straight up, he pulled his body up one stair at a time.  The next day, Roland suggested we all try doing it for a family activity.  Reece timed us as we all took turns pulling ourselves up the stairs.

The Seven Week Adventure

We thought this was going to be a "rest up" day.  The only thing on the agenda was me representing Alex's mom by bringing a cake that we made last night together shaped like the Korean flag and escorting him at the high school Most Preferred assembly.  Roland is worried about becoming weak from not being able to move, so we did some exercises with hand weights and resistance bands while he was semi reclined.  Then it was time for a nap, but that was a short lived plan.  The nurse at the cancer center called and asked us to come right away.  Roland was supposed to have a B12 shot before beginning Chemo and radiation on Monday.  He moaned, but slowly prepared to go.  He made it to the front door, but needed to lay on the floor for ten minutes to rest before he could finish the trip to the car.  Once we arrived, he asked if he could wait in the car until there was an available place to lay down in the center.  I went to check on that and the helpers there said they would be happy to bring the shot to him in the car so he wouldn't have to move.  The  nurse intervened to say that the doctor had called and she had been thinking a lot about Roland's treatment plan and wanted to change it to something more tedious because, "He is so young and healthy."  Therefore he would not need the shot after all.  I tried to convince him that the exercise getting in and out of the car was probably good for him.  He wasn't really buying that.  What he did like was that the doctor doubled his pain medicine dosage.  I pulled into the garage and he managed to get out of the car, but lied on the concrete for about 20 minutes before gaining the strength to move to the hallway entrance.  He rested there for about 15 minutes and then dragged his legs behind him using his arms to get to the recliner.  The pain is intense when his legs are not above his heart--elevated.  He could finally rest.

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.

We Have a Road Map!

Roland was not happy to have to travel again today, but the trip to the cancer center was informative and productive.  He was in a wheel chair or lying down most of the time because moving around makes him nauseous. The radiation doctor prepared him for radiation treatments by scanning him and tattooing him (nothing fancy or artistic--just dots) so he can know exactly where to direct the radiation.  When the oncologist saw him, she was taken aback.  She prescribed a stronger pain medicine.  Yay!  And she gave him some medicine for nausea.  She explained the Chemo that he will be receiving and said he can start on Monday with the radiation.  Wow!  I thought we would have to wait for the leg situation to get better first.  That is a blessing.  There are lots of instructions for me and I am still trying to figure out all the things I need to do.  I have alarms set to give him his different medicines and shots on time.  I am keeping a journal of what he takes when and how he is feeling.  I am taking his temperature and keeping him hydrated and fed six small meals a day.  The new medicine makes him really "out of it" and he doesn't have much of an appetite, but he is supposed to be eating and drinking.  I admit that I am stressed out about caring for him and he hasn't even started Chemo!  The course of treatment is designed to last 2 months, but I am supposed to just try to get through today.  I am happy even though this is hard.  I don't feel alone and we know where we are going with this.

Hat Trick Day

Since he had three appointments in one day we are calling this our Hat Trick day. It was so painful just getting him in the van.  I was so happy to discover the valet parking service in St. George. I snagged a wheel chair so he didn't have to try to walk which is extremely painful.  Two of the doctor appointments were with a cancer surgeon and a vascular surgeon.  Both of them said, "no" to surgery.  I guess that is good.  Here are their explanations:

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.

Looking on the Bright Side

As I mentioned, Roland wanted to see Annie, but couldn't.  We received a call today asking Roland if he would like to have Annie from the show sing to him at his house.  Roland was so happy.  The star of Annie, one of the orphans (her sister), and the piano player (her dad) from the pit orchestra came to our house and sang with piano accompaniment "Maybe" and "Tomorrow" (great, timely message in that song).  We were both touched by their thoughtfulness and especially the singing.

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.

The children all sang in spontaneous harmony together.  There is no better sound. (except Roland's soft breathing!)  We played games, got silly and laughed together.

During times like this, drawing strength from each other by spending time together is a great spiritual uplift.  We talked about trusting and proceeding with confidence if we know we are doing the right thing.  We talked about our different strengths and how to strengthen our weaknesses.

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.

Ambulance Adventure

The swelling got worse on Saturday and the pain gradually increased, so he went back on pain medication and kept his affected leg elevated.  Our adult kids came Friday night and Saturday for Ground Hog's Day.  Roland really wanted to see the Community Theatre's production of Annie, but he could just hobble on crutches even with the medicine.  I did not want to leave him alone, but he insisted I go and since some of the children would be with him to take care of his needs, I decided to bring the children who wanted to go (to please Roland and to get my mind off his care for a while).  When I arrived home at 10:30, I found him in the bathtub writhing, moaning and cringing, his leg swelling worse.  There were wet towels around, so it appeared he had unsuccessfully tried to get out of the tub.   My first thought was, "Why did I leave him?  This was followed by, "Why didn't he call me?" I wish I could report that I calmly did all the right things.  Instead I asked him a lot of questions about how I could make him comfortable.  He wanted to get dried off and in bed, but he couldn't do that unaided.  We decided to drain the tub.  He was panicky.  (He doesn't get panicky. ) He asked for lots of things at the same time.  (He rarely asks for anything. ) I knew it was time for his Lovenox, so I gave that to him in the tub.  As soon as he was in bed, I called our home teachers. I wanted him to go back to the ER and I didn't think I could get him in the van without some help and our van's heater doesn't work.  I hoped they could drive him to the hospital in a warm car.  He was anxious about getting pneumonia (He had a shot for this already) and could not get warm.  He felt quite warm to touch.  (fever 102 point something) When our home teacHers arrived (what a blessing that they both have medical backgrounds), we decided it was unsafe to move him in case the clot would dislodge and cause more complications, so I called 911.  After lots of paramedic questioning and checking him and wires and beeping sounds, he was carefully gurneyed up and given morphine in the ambulance.  After calming down the children and assuring them that Dad was getting the best possible care, I gathered a set of clothes (He left in just a hospital gown), and went to the ER.  He looked relaxed.  After a while they had his pain managed and care instructions given to me.  (I think I should have a few nursing credits by now!) I was able to bring him home.  He was able to get in the house using crutches.  I set alarms to be able to give him medicine through the night.  My new favorite sound is Roland's soft breathing.  It is music to me.