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. 

October 17

Things have normalized to such a degree that I have not felt the need to write things down. Dad is good enough to absorb all my complaints and grumbles and he sympathizes with me and shares all my symptoms. 😊

When we went to the cancer center for my 2^nd cycle of treatments we had an interesting experience.  While the infusion part only lasts about 45 minutes, the required blood draws lasted just about all day. There is a blood draw before the infusion and then half and hour later and then one after the infusion and then once every hour followed by once every 2 hours. So by the time we get to the every two hour blood draw we are free to leave the cancer center and stroll around a bit or walk over to the main hospital where they have a very nice cafeteria.

It was a very nice day so we walked across the parking lot to the hospital cafeteria. We had a nice lunch and on the way back we saw a man crawling in the grass strip that divides the street from the sidewalk.  Dad thought we should check out if the guy needs some help.  It was hard to tell if he was trying to get up or just trying to get comfortable lying in the sunshine.

As we got closer we could see that he was trying to army crawl but kept on falling on his face. He was an old, haggard, tall man. He had fresh bandages on his wrists, no teeth to speak of and a sort of turban on his head that made him look like an Indian fakir.

We asked him if he needed help standing up and he was happy to be helped. We hoisted him up and even slumped over he was taller than us. He said he was trying to walk to the street corner, a couple hundred feet away, so he can catch the bus home.  We walked at a snail’s pace but even so his feet kept buckling up under him and his head hung so low on his chest he could not see where he was going.  

Half way to the street corner was a stone bench and we deposited him there, I had seen an abandoned hospital wheelchair in the parking lot so I went to get it and we helped him into it. There were some nice construction workers how brought him some bottled water and they told us that there is no bus stop at this corner.

What now? Finder’s keepers. We had picked him up and now we didn’t know what to do with him.  Dad started to wheel him towards the street corner and he started to give directions on where to go.

I felt it was better if I returned to the cancer center but Dad was a trooper and wheeled him further down the street. The guy kept telling him just go to the next corner.

Back at the center I waited for Dad to return and after almost an hour I was getting worried so I called Dad. He had by now wheeled the guy a long way around the next block but had not found the right bus stop yet.  Eventually they came to a mental institution where the guard by the front door recognized the guy and Dad was more than happy to turn him over at this point especially since he had started to complain that he needed to use the bathroom and then told it was too late he had already pooped in his pants.  Initially I felt guilty for appropriating the hospital’s wheelchair without permission but on a consequent visit I noticed abandoned wheelchairs, like grocery carts, in several other places also.  I figure they are not going to miss that one.

More than five weeks after our accident we finally got a call from the car repair place that Dad’s car was ready to be picked up.  So Tuesday morning we drove up to Sacramento picked up the car and I immediately headed back home.  Once I got back into Merced I stopped at the grocery store to pick up some sandwiches for dinner and while I was waiting in line at the check-out  I suddenly felt very hot and cold and dizzy and I knew I had to get home fast.  It was the strangest thing it came on so fast.  For the next three days I felt pretty rotten. I had a rash that bloomed all over my legs, my bones and joint were so painful I could barely crawl upstairs and I could not eat anything.  Then by Friday as fast as these symptoms had appeared they subsided again and I was back to my normal self. A little thinner and tired but pain free.  I sure hope that was a one time occurrence and not to be expected every month.

September 5

I am so glad that summer is coming to a close, the weather has been a little cooler and I felt justified to pull out some of my favorite fall decorations.

We spend almost all week in Sacramento, what a blessing to have a bedroom with an adjoining bathroom.   I am grateful for that every night as I make my 2 am trip to the potty.

Wednesday morning we sat out at 7 am to finally get this treatment started and find out what it will do to me.  To anticipate the worst is a un-nerving feeling.

As soon as we turned right out of Tim’s neighbor hood the sun came over the horizon and totally blinded us. Fortunately there was very little traffic on that road and we knew that after a few hundred feet we would make u-turn and have the sun behind us.  So we started to sing ‘ ..if the sun hits your eye like big pizza pie it’s amore..’  Suddenly a big jolt and a loud rattle made us realize that we had not seen the curb of the median and the right front tire had hit it straight on.  We bounced of the median again and limped to the side of the road.  As soon as we got out our worst fears were confirmed, we had totally busted the front tire.  Since time was of essence we hurried back to Tim’s house and while Dad had to call the insurance and a tow truck Tim was able to take me to the hospital before work.  I considered that car ride with Tim a great blessing because it gave us an opportunity to talk and share our thoughts and that comforted me a lot.  Even though by now we had a late start I made it to my appointment with 2 minutes to spare and the added blessing was that the hour long commute gave Tim and me the opportunity for a good talk that uplifted and strengthened me.

After donating some more blood to science I was welcomed to the infusion center of the UCDavis Cancer Center. I was assigned a chair and a friendly nurse, a blanked, a pillow and some hot chocolate.  My right arm was pocked once again to attach a port that would allow them to draw blood at frequent intervals to make sure the infusion would not kill me.  Then the nurse put on a protective gown, a mask, some goggles and special gloves in order to hook me up to the infusion.  It was not very confidence inspiring to see that the nurse had to wear all this gear to protect her from coming into contact with the stuff that was to seep into my veins.

As I was thus being prepared Dad arrived at the hospital and is was so good to see him, he had rented a car and hurried to be there so he would not miss the exciting stuff and so he could give me moral support.  While I was hooked up to the IV I didn’t think they had turned the trip on yet and I was nervous how I would feel when all this poison was pumped into my body.   I mentioned to Dad that I was wondering when they would finally turn the infusion on and to my great surprise Dad showed me that the bag was already half empty, it had been running for some time and I had not even noticed it!  I felt just fine, no nausea, no vomiting, no cramps no nothing. I am so grateful that I did not even notice that it was turned on so I could not be prejudiced about it. From then on I was so relieved and rest was no problem at all.  I still had to stay there until late in the afternoon because they had to take blood samples periodically and give me EKG to monitor my heart.

At the end of this eventful day I felt somewhat foolish and embarrassed that I did not have more faith and trust in the feeling that everything would work out fine. I had prepared myself for the worst and I was willing to accept whatever would happen.  How grateful I am for this blessing, my worst fears have not materialized and I can look forward to the next round of treatment with much less trepidation and nervousness.  I feel that the countless prayers and the fasting of so many wonderful people in my behalf have given me this great blessing.

Today was Fast Sunday and I received such an outpouring of love from our brothers and sisters in the branch. Even Kong came and stood in line to give me a bear hug.

August 28

I was scheduled to start my first infusion on Monday but now I will have to wait until Wednesday. I was really disappointed but there is nothing I can do.

I neglected to write a story that has comforted me and stuck with me since I first thought about it some weeks ago.   While in the midst of doctor’s visits and being pocked and prodded with every diagnostic procedure I can think of the Elder came over one night to share a spiritual thought with Mee.  ( Mee and Karen are 2 Hmong girls who have stayed with us all summer after their parents kicked them out of the house for joining the church)

The scripture they shared was the revelation given to Oliver Cowdery in D&C 8:2-3 about the spirit of revelation and the Holy Ghost. Verse 3 concludes that the spirit of revelation brought Moses and the children of Israel through the Red Sea on dry ground.

Now if I had been Moses and I found myself stuck between a large body of water and a murderous army I don’t think that praying for the Red Sea to part would have been on the top of my wish list.  The Lord could just as easy cause the Egyptian chariots to get stuck in a mire or better still kill them with large hailstones or best of all let the earth open up and swallow them all up. All these scenarios had already precedents in the scriptures. 

But to Moses the Lord said : ‘ Lift up they rod, and stretch out thine hand over the sea and divide it; and the children of Israel shall go on dry ground through the midst of the sea.... and the waters were a wall unto them on their right hand and their left.’

The Bible scholars don’t seem to agree exactly where the Israelites crossed this body of water.  Some think it was the Gulf of Suez others think it was at the southern end of the Gulf of Aqaba.  At that place the Gulf narrows considerably and if the waters were removed it would expose a land bridge about 11 miles long and between 800 – 1800 feet in depth.  Even at this narrow part of the Gulf crossing it would be no walk in the park. 

So while the Lord held the great waters at bay the Israelites still had to walk through this horrific and terrifying tunnel of water, climb down embankments and navigate an uncharted and uneven ground, all the while looking up at this wall of churning water looming over them.   On average a pioneer wagon train covered about 15 miles a day, so I estimate that the trip across the bottom of the Red Sea would be at least about a day’s journey also. 

Why did this story stick with me?  Faced with overwhelming, life-threatening problems the Lord can open a way for us to safety, he can part the waters of the great deep but He still expects us to walk through it. 

August 23

My life has normalized to some degree. Yesterday I went walking again with Janet, not the whole distance but just enough to stretch my legs and have a soul filling talk with my loving and kind friend.  I went to the courthouse to get an excuse for my jury duty summons and was excused for the rest of my life from jury duty.  ( 70 is the cut off date for jury duty anyway)  I went to the store and then made pumpkin bread with some of the monster pumpkin squashes Dad has grown this summer.  After a nap I made some yummy FHE treat and enjoyed the kids who came to share it with us. All in all not a bad day for a lady with a bum lung.

Dad and I are optimistic about the Immunotherapy, our talk with Dr. Lara has given us some vision for a viable future.  But at this point I am afraid to expect too much.

August 19

I realized something today I need to write down so I will not forget it.  In the midst of emotional turmoil it is hard to hear the voice of God and to feel His presence and love.

When we left Tim’s house yesterday morning I hugged and kissed Charlie and said ‘ good bye my sweet little boy’ I next hugged and kissed Tim and told him teasingly ‘good-bye my sweet big boy’ to which he replied ‘good-bye my sweet mom’.  It was really nothing, just gentle expressions of love, but it so soothed and comforted my heart.

This morning a scripture came to my mind that until now I had only interpreted one way.

Matt 25:40

40 And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

Suddenly I can see how that works both ways. Whenever someone does or says something kind, encouraging and loving to me it is as if it was said and done by a loving Heavenly Father himself.   Have received so many expressions of love in word and deed from Roger, my children and grandchildren and my friends I now realize that through all of them God has spoken to me. What a blessing!

August 13

For the last two days I have some measure of my equilibrium back.  I woke up Thursday morning and I felt like myself again. The cancer has not gone anywhere but I have apparently gone to a more peaceful place.  I had had such big mood swings, going from wondering if I would see next Christmas to planning for the next family reunion in a matter of minutes.

We went to the temple last night and Sis. Bradshaw has kindly scheduled me for only half the night.  My assignments ended at 6:30 and I was tempted to stay longer but as soon as I sat down in the break-room I knew I was at the end of my stamina.  Pushing myself too much always ends in coughing fits.  Often well meaning people see me coughing and hand me a cough drop, I just wish that would help.

Herzbebben

Herzbebben

(Heart-quackes)

The first definition for the word ‘cancer’ in the dictionary is ‘growth’.

August 11,16

Just two month ago my life stood on firm ground, the future stretched before me bright and clear far into the distance.  I could envision fun trips to visit family and to explore exciting places in the world.  Perhaps some home improvement projects could be tackled. We had started talking about a mission and we had just gotten comfortable with the more leisurely pace of retirement and the increased freedom it offered.  Life was good and I loved it.

That‘s when cancer rocked my little predictable and secure world.  The initial shock wave totally caught me by surprise.  Suddenly everything seemed out of focus, it was so disorienting and we just tried to concentrate on what was right in front of us.  The following aftershocks of tests and procedures, the waiting and the uncertainty were causing me to feel more and more vulnerable and insecure.  I could see the fear and frustration in Tim’s and Roger’s eyes and I could hear it in my children’s voices, it scared me.  My initial innate bravado and optimism started to wear thin.  

The easy street that had so reassuringly stretched out before me earlier has become unrecognizable.   It is not smooth anymore, there are now craters and places where the pavement is piled up so high I cannot see over it anymore to look into the future. I am trying to live by faith.

Elder Maxwell, whom I so admire, said it is better to not shrink than to survive.  I still am not sure that I totally understand that, I am trying not to shrink in the face of fear and uncertainty.

I feel somewhat good that the question ‘why me?” has not bothered me. I do not feel any resentment but there is a great feeling of loss for many anticipated pleasures that may not be realized now.

But not everything has been bad.  I feel so loved!!!!

Roger, my wonderful children, extended family and so many friends have expressed their sincere love for me in such a measure that I feel deeply humbled and undeservedly blessed and grateful.

I have been supported through prayer and fasting by people far and wide. What a blessing.