Jan 12, 17

So much happened since my last entry I got discouraged to write it all down.
We had a wonderful Christmas. I really love decorating the house for Christmas, it helps me to prepare myself for the holiday also. I love watching the twisting and dancing snowflakes in front of the tv cabinet and the ones stuck all over the windows. The window snowflake decals are still up after all the other stuff was put back into the closet for another year.  It helps to have a little holiday mood to stick around.
The way my breathing has been really curtailing what I can do and how far I can walk we decided it would be better not to go all out on gifts this year. I was not sure how I would like that. A great part of my Christmas preparation has always been to go shopping, find and buy fun gifts and to wrap them up, put them under the tree and wait for the fun to begin.  This year Dad and I decided not buy anything for each other and most people in the family got a money gift. To my great surprise I did not miss the gift giving part very much. It still was nice that Missy's family had all her gifts shipped to our house and packages showed up for us from family, so we certainly were not without great gifts.
Dad and I still got to on a small scale shopping spree to buy things to fill stockings, that was fun without being overwhelming.
It has been more than a week now that everybody went home and the house is quiet again.  The last few days I have been struggling.  Dad has an abscess in his mouth and I just don't seem to get enough air into my lungs so we decided to shirk our temple shift on Friday. We did go the previous Friday and I hated to have to wimp out and go home early.  There have been other episodes before when I was so short of breath and so I hope this will not be permanent either. But it sure depresses me while it lasts.

December 8

It took me about 5 days to really recover from this bronchoscope but once I was over it I started to feel so much better and just in time to celebrate Thanksgiving.  We had a great time with Tim and Cami, were able to see Charlie have a blast on his birthday and enjoy a nice Thanksgiving day with great food and nice company. 

We drove home after the big dinner and enjoyed a nice quiet weekend along with the turkey dinner leftovers Cami had packed up for us.  After being gone a few days every single week during November it really felt great being home again with the knowledge that for the next little while we had no where to be.

November 20

I have been totally out of commission for the past two days.  On Wednesday we headed back to Sac for another bronchoscope to be performed on Thursday. I was not looking forward to this at all but by now my breathing had become so labored I barely made it up the stairs.  We were told that a stent inserted into my bronchus would keep my airways open and help me to breath better.  So that is what I wanted.  But after a consultation with the lung specialist I started to have some doubts. He explained that stents tend to clog up and I would need to come back every month to have the stent flushed out. Yuck!

During the procedure they found that my right bronchus was totally blocked off in two places and that rendered that side of my lung useless, thus all my huffing puffing and whistling.  They were successful in cleaning out the clogged areas and when I woke in the recovery room I was able to breath again.  What a relief.

Cindy had sent me a video clip from a workshop with Pres. Holland. It was titled : We can have what we want or something better.  Meaning that we can assert our will to get what we think we want or we can trust God and accept what he has for us, which is always infinitely better.

That is what I remembered when I woke up in the recovery room. I was really hoping for a stent but I sure got something better. 

The procedure took twice as long as anticipated and it left Dad and me pretty tired and exhausted.  While it is no fun to be hooked up to wires and tubes and have ones insides roto-rooted, at least it is done while one is asleep, but to sit in an un-comfortable waiting room for 3 times as long as anticipated is pretty nerve-racking.

I have stopped whistling but now I am barking.  Dad had a bad cough for the last 2 weeks and I am afraid I got some of that.  Either Dad’s cough or the irritation from my freshly cleaned out lungs has given me terrible coughing spells.  This is the first time in I don’t know how many years that I felt unable to go to church.  I also had to miss Karen’s farewell party last night, which made me sad.  I hope I get better soon because we have a busy week ahead of us.

November 16

Since I ended the last entry with an account of the little miracles that have occurred I might as well continue in that fashion.

While I was very excited to get away from it all for a few days the trip itself stressed me somewhat.  Dad had booked tickets out of Fresno but the direct flights were so expensive that we opted to accept the inconvenience of layovers.  On the way there it was Fresno – LA  - SLC and on the way home SLC – SF – Fresno. Having flown enough I knew that there was the high possibility of departure gates that are far distances apart and long hallways that needed to be navigated quickly and that worried me.  I can walk short distances at turtle speed but for longer stretches I need to power down to snail speed, either way after a short while I huff and puff and my heart feels like it will jump out of my chest.  Having been a very purposeful walker ( meaning getting from point A to point B as efficiently as possible) my whole life this is very hard on me.

We arrived in LA and I was prepared for the worst only to find out that our arrival and departure gate were only 3 gates apart. What a blessing!  But it gets even better, on the way home our departure gate in SLC was right in front of the airport, usually it is located way in the back and downstairs.   When we got into SF I huffed and puffed up the jet way and emerged totally exhausted from gate 78. While Dad looked around to find the electronic departure screen to know which gate will have the flight to Fresno I plopped into the closest chair and was fully prepared to tell Dad that he needed to find a wheel chair for me because I could not go another step.  As it turned out our flight to Fresno left at gate 77B and I was already sitting in the correct area.  Wow, somebody was really looking out for us.

Having said all that I can now go back to the fun time we had in UT.   I am so glad we had the opportunity to go, it made the week go by so fast and it was so nice to visit with Heather, Lance and the kiddos.   We spend some time at the outlet mall, the LDS book store and Gardner village.  All fun activities I enjoyed. On Friday night we had our almost traditional outing to the ‘all you can eat’ sushi place in Orem.  It was nice that Natty and Mee could join us also.

While Dad, Lance and Andy met up with Tim for the football game Heather, Jonathan, Layna, Natty and I went to Gardner village.  It was a beautifully sunny day and it was fun going from store to store and admire the decorations and merchandise offered.  I knew I really wanted to find something that Heather and Natty would like to have so I paid close attention to what the liked.  We wandered around until the little kids and I ran out of gas and as we headed back I asked them what they would like to have from all that we had seen.  Heather chose some pilgrims and Natty a cat ornament and some cat socks. 

As I was later reflecting on our outing I could see a parallel with my life.  Here I was so eager to buy Heather and Natty something that they would treasure but until they told me what they wanted I did not know what to buy.  I can imagine God being so eager to bless us but He is waiting for us to tell Him what we want.  It has given me more faith and courage to ask for what I really want.

November 7

In previous entries I have been complaining of the disparity between my rotten inside and my normal outside.  Well this past week I had no such problem.  There has hardly been a minute when I didn’t fully realize the severity of my condition.

We left on Tuesday and had a fun movie night with the kids watching the new ‘Jungle Book’ movie. It is such a treat that Cami always has a yummy dinner waiting for us when we arrive.  Wednesday morning we set out again for another round of treatments and for a consultation with Dr. Lara, the oncologist.  I was looking forward to it, because I felt so encouraged by him 3 month ago when he started me on the immunotherapy.

When we left Tim’s house the morning looked magical, it was still dark and there was this wispy band of low laying fog over the fields, the multicolored lights from cars, traffic signals and buildings punctuated the misty atmosphere.  As pretty as it was it caused the traffic to slow considerably and we soon realized that we would be late for our first appointment at 8 am.  The appointment was with the lab to get a blood draw but when we finally arrived 20 minutes late the lab was still closed because they had difficulties with their printers.  The printers are needed to print a label to indentify each and every blood sample taken. 

The lab is downstairs and the doctors’ offices are on the first floor.   As our appointment with the doctor was at 8:30 I was getting anxious as to what to do.  So I stayed in the lab waiting while Dad went upstairs to check me in with receptionist so they knew we were in the building. But the receptionist would not allow Dad to check me in because he was not me, duh.

So he came downstairs again and he waited in the lab and I went upstairs, shortly after I checked in I was called up to see the doctor so I texted Dad to come up, but no response, so I called him and my call went to his voicemail, so frustrated I went downstairs to get him and by the time we finally saw the doctor I was wheezing like crazy.  That made the doctor very worried and he went to consult with the Dr. Yoneda the lung specialist.  The two of them studied my CT scan images and felt it was necessary that a stint be placed into my lung to prevent the tumor from closing off my windpipe.  Since we had already planned our Utah trip next week it was scheduled for the following week. 

That was very disappointing news to me.  Not only had my tumor not shrunk one bit, it is now inflamed because of the medications I am taken.  The inflammation is supposed to be a good thing because it signifies that my immune system is attacking the cancer, my right lung is now ground zero in the fight between the brave white blood cells and the bad red blood vessels that form this ugly blob.  So far the red team is still ahead. The inflammation also causes a swelling and that presses on my bronchus and decreases my ability to breath, thus all the wheezing. And not just wheezing, my lung makes the weirdest noises.  At times I sound like I have swallowed a harmonica.

The necessity for a stent placement really discouraged me. It is done via another bronchoscope and I did not enjoy the last one at all. 

After all this let down news I still had to go down stairs to get my blood drawn and have another infusion. By now it was past 10 o clock and I had not had anything to eat or drink since early morning and my blood vessels were as flat as my mood.  Which meant several attempts by the phlebotomist to find a productive blood source to fill all the necessary vials. 

All good and bad things finally come to an end and so by the afternoon we were back home. 

Thursday morning I was reading a talk by Elder Holland titled “ All things are possible to him that believeth’; it expounds on the story of the father who so desires his little son to be healed but who does not seem to know how to generate enough faith.  “I believe” he cries and then adds the plea “help thou mine un-believe”.

I can so identify with this man. I have a hard time reconciling the two seemingly contradictory ideas of having faith enough to be healed and allowing God’s will to be done.  

The courageous “but if not” from the three brave young men about to be thrown into the fiery oven is what I need.

We have already seen small miracles and we are so grateful for them.   When uncle Bill died in July we really wanted to go to the funeral but the lung specialist in Davies urged us to come see him as soon as possible.  By that time I was experiencing several bleeding coughing fits a day.  We prayed about it and felt it was the right thing to postpone the appointment one week and go to the funeral.  From that point on my coughing fits diminished and eventually stopped completely. 

At the onset of this journey I was more afraid of the treatment than the disease and again I was blessed because so far I have not been unduly sick.

Since Thursday my flagging courage has rallied again, my wheezing has diminished somewhat and my inhaler has helped me over the worst.  Things are looking up.

October 30

I had an SOB  (Shortness of Breath – when I first started working at the office I had to learn all these acronyms and this one always tickled my funny bone) kind of a week.  I have been wheezing and trying to catch my breath all week.  Maybe some of my symptoms are related to the anxiety I experienced getting the CT scan.  While my brain tells me that no matter what the scan shows at this stage of the treatment it is no indicator of the eventual outcome.  But my heart is scared.  This cancer has snuck up on me so furtively that I just cannot trust my own instincts now.

One of the more difficult aspects of this disease for me is the fact that it makes me feel so schizophrenic.  Somebody tells me almost every day that I look great.  This I am sure is due to the fact that I lost some unwanted pounds because I have almost no appetite.  But invisible to the natural eye, inside my chest I know I have this vile monster that steals half of every breath I take.

In the course of the day I forget myself for long periods of time while I am caught up in daily chores or a good story or a conversation, that is when I feel like my normal self again and then suddenly and forcefully the truth hits me again.   Emotionally this has been a hard week for me and my confidence has been wearing thin. 

October 23

Today is Missy’s and Cami’s birthday, I hope they will feel loved and special.

At the beginning of the third week of my third cycle of treatment I can report that so far this has been the easiest round. Besides the ever-present fatigue that seems to keep me stuck in my chair most of the day I am doing pretty good.

This Friday morning I am scheduled for a CT scan to find out if any progress has actually been made.  I am trying not to get my hopes up but at the same time I am nervous to find out what is happening to the lump in my chest.

Whatever the scan shows the treatments will continue for some time longer.