"Being Connected"

"When we are no longer able to change a situation - we are challenged to change ourselves."
Victor Frankel

When other people talked about starting chemo I always said the usual things that one says in those situations.  I never took the time to really think about what  voluntarily infusing "poison" into ones body might feel like, both physically and emotionally. 

For me it was taking  an unknown step hand in hand with a ferocious partner to fight the biggest battle of my life.   A journey with a unpredictable companion that at any moment could turn on me with swift and lethal consequences. 

I approached my first infusion with great anticipation. I am not a patient person so when the decision was made and a plan laid out I was eager to get it going. It really was just like another day of  engaging in the next battle. A great relief to finally be able to move from a holding pattern to actually being able to be proactive and have a direction and a goal to aim for.

It has been a confusing 5 weeks from different prognosis to insurance denials. Thru all of this I was blessed with strength and hope. Although I did have one very bad day when the insurance company denied coverage of the best drug for my particular case. Thanks to the patient advocate another drug was accepted. It is the second choice  but has less side effects and is an infusion instead of a pill but we feel fortunate that it is covered 100% by insurance.

3 days after infusion my only side effect is a very slight metal taste in my mouth and food don't taste the same. Treatments are every week for four weeks them off 1 on 4 until the drug becomes ineffective. It will not shrink the tumors like Sutent does, but it will keep them from growing. Will have a CT scan in 2 months the evaluate how effective it is.

Until then, Torisel is my friend, Torisel is my friend.....

"Just Can't Get Enough"

We must accept finite disappointment, but never lose infinite hope.

The surgeon did not choose the biggest tumor. He chose the one he thought was the easiest to reach together with the least chance of complications. We were informed on Friday that a diagnosis could not be made because of lack of tissue. Just a minor set back. We now begin the discussions with the insurance company. Without a definite diagnosis it is hard for them to justify bearing the ghastly amount of money for the chemo treatment. Although based on all tests it is a 99% probability that it is renal cell they like to deal in definites. My thoughts are that it is definitely cancer and a treatment is called for so what difference does it make what individual drug is used. Owning a pharmacy for over 20 years I still do not understand insurance companies. To me their reasoning is unjustifiably flawed, but that is just my opinion. We will be patient and continue to trust in The Lord. 

The plan is to try a new drug for metastatic renal cell cancer called Sutent. Dr Samuelson only has 2 patients on it. It is an oral chemo with minimal side effects. After two months I will have a CT scan. If the tumors are smaller we will continue with the chemo.

"Just Stab Me In The Chest"

You'll need a hero

And a good dog

Especially a good dog

A bandaid now and then

May the simple things be amazing

On the journey of your life

He said I'll be an angel flying by your side

On the journey of your life

Recovering nicely from the biopsy. It went well. Minimum pain until after the procedure. I was given a local anesthetic and a small tube was inserted into my lung just below my right Collar bone. They choose this particular tumor because is was the closest to the surface of the lung and the easiest to reach with the smallest chance of complications. A biopsy needle was then inserted into the tube. It took seven tries to get enough tissue with a CT scan after each try. Each time I felt a very deep ache for just a second. The staff and Dr. were great.

I still have a sharp pain under my right shoulder blade but it is getting better. I have had this same pain off and on for the last 8 months but thought it was just age related from my shoulder replacement. Obviously it was the tumor. I felt it as soon as the needle hit the tumor. So much for having no symptoms. Hind sight can be very enlightening.

Its still gonna be a long road and it will have its bumps, potholes, dips and hills, all roads do, but today I choose to climb the hill to the top so I can view the road and prepare myself for the ride to come. (from a comment posted on FaceBook about a close friend of ours that was killed last week in an airplane crash. Thank you Ciera Jade Hardcastle.)

"Sunday Sunday"

To give vent now and then to his feelings, whether of pleasure or discontent, is a great ease to a man's heart.  ~Francesco Guicciardini

Sunday Sunday can't trust that day,

Sunday Sunday sometimes it just turns out that way

Oh Sunday morning, you gave me no warning of what was to be

Today is my first "down day." I don't know why I just got up and started crying. I realized that I don't need a specific reason to feel different emotions I can just let them in, see how they feel, keep them or let them go.

It's Picture Day.......Again!

One more CT scan today. Have to drink the chaser solution instead of having an IV. They tried to mask the taste by putting it in Crystal Lite Lemonade. Not successful. At least I have an hour and a half to drink 6 cups. Hey wait a minute. I am confused. I have been told a chaser is afterwards and is supposed to complement that which comes before. Bottoms Up! I hope my lungs are smiling.

"One More Test"

The Devil tempts that he may ruin and destroy; God tests that He may crown. 

Just talked to Dr. Samuelson, the oncologist and am scheduled for a lung biopsy tomorrow, July 2, at 7:30am. Will have to be evaluated for 4 hours to make sure that lung doesn't collapse. CT Scan last Fri. revealed 15 tumors, but only 2 are big enough to biopsy. The other 13 are very, very teeny, tiny. Will have results in 2 days. We are definitely looking at stage 4 cancer. Anytime a cancer spreads it is considered stage 4. This will confirm what kind of cancer. 99% chance it is Renal Cell. The treatment will be oral chemo at a mere $7800 to $11,000 per month. Oh, happy day! Still holding out that will can remain full time missionaries either back in the Philippines or here in Salt Lake because of the insurance. As long as we are not released we will have DMBA Insurance. It will be in force up to 90 days after our release date. Still have not heard how much of the meds it will actually cover. Since no one knows how my body will respond to the drug we have no idea if it will be affective or not. The most that can be expected is that it will slow down the growth. Right now Dad is still working on projects in the Philippines via e-mail. If that doesn't work out we can request a reassignment to something like the family history center for the next 8 months. I have faith that as long as we are doing all that we can The Lord will provide. He knows me personally. His Son, our elder brother and Savior has already suffered all of our pain and sorrow. When things are happening around us that we don't understand or cannot bear we must find a way to give it all to Him. It may take time and will not be easy and at times seems impossible but we read in Mark "all things are possible to him that believeth." I not only believe but I know this to be true.

"Ruby Tuesday" or so Elder Hadlock says.....

“To cut off the confusion and accept an answer just because it's too scary not to have an answer is a good way to get the wrong answer.”

It's Tuesday. Oncologist Day. The big D-Day. The day that we have all been waiting for. Make-The-Plan, Work-The Plan Day. Didn't work out so well. The doctor was distracted, this by his own admission, had not familiarized himself with my case and really didn't know what to do except re order tests that had already been done. We showed him everything that had been done and he thanked us for telling him so I didn't have to be poked and prodded again. Never mind the $2500 it would cost to redo everything. He wants to meet with a radiologist to see if it is possible to biopsy one of the tumors because they are so small. I have it on good authority that a BB can be biopsied, so I am not real confident in this guy. During his "straight from the hip approach" he bounced around so much we are not sure he was talking about me, another patient of his, or some ambiguous Jane Doe. I love a "tell it like it is" doctor, what I don't appreciate is an insensitive one. If I indeed have 6 months to live I would rather not spend 3 weeks of it waiting for answers that pertain to my case. Anyway we will talk to him on Monday. He said he would call us, but his own staff said that we would need to call him back because he "gets distracted. This guy actually came with rave reviews from Dr. Bishoff, whom we dearly love. I guess we will give him one more chance. It is probably my fault because I was in such confusion trying to grasp his randomness that I didn't ask questions. On Monday I will be more proactive and take control of the situation. I am sure he will appreciate knowing where I stand. It is impossible for him to answer questions that were never asked. I am a "make the plan, work the plan" kind of a person, which is not good or bad. It is just the way I survive OCD. So, if I don't have a plan then frankly there is no plan and I obviously do not embrace that scenario in a patient manner. To remain in a somewhat stable condition I force myself to devise a substitute plan until the real plan surfaces. My alternate plan is work on being patient, sustain and support family and friends during this crisis, do all that I can to become informed about my condition, work out a healthy eating plan, and enjoy the moment without looking to far into the future. I remind myself many times a day that this is all in the Lords hands. There is a reason why things happen as they do. We need to take control where we can and let that which is out of our control follow its own journey. Wow, that sounds pretty good. I think I will put that into action right this minute.

Much Ado About Nothing

"To be upset over what you don't have is to waste what you do have. Ken S. Keyes, Jr."

 Met with Doctor Bischoff today. He is a urologist and a wonderful man. The first thing he said to me was that I had years left. He walked us down three flights of stairs and over to another building to make an appointment with the oncologist. He then gave me a big hug and told me how happy he was for mr me. Needless to say we were very happy and began thinking about returning to the Philippines. To be honest I started to feel guilty because of all the worry this has caused so many people. Life went back to pretty much normal. Visited kids and my sister and brother in Idaho. Had a great weekend.

The Party, "Parting Is Such Sweet Sorrow"

"A line from the play Romeo and Juliet, by William Shakespeare; Juliet is saying good night to Romeo. Their sorrowful parting is also “sweet” because it makes them think about the next time they will see each other." 

Marcia and the DuPaix's put together a pot luck going away party for us on Thursday nite. All of the Senior Missionaries as well as President and Sister DeLaMare and President and Sister Beck were there to wish us well. I started the evening with an explanation of what was going on so that everyone would know and we all could enjoy eating. After the dinner Steve and I bore our testimonies and thanked everyone for their friendship and support. I do not remember much of what I said but I do remember how I felt. Since we heard the news I have felt the most profound peace. No fear or anger, just the most beautiful peace that I have ever known. I know that we are all in the Lord's hands and He has a plan. I know where I am going and I know what I will be doing. I wish everyone could feel the peace that I do. We have all said this goodbye before. We had the same uncertainties of the unknown, the same excitement for the new adventure we would be experiencing. Our spirits remember that 1st goodbye. We will soon be together again just as we were before we came to this life. On Wed we took a breather and went to the movie. As I was watching the action on screen of "the Man of Steel" I was thinking about where we all are going someday and I was actually a little giddy thinking about it all. By the way, great casting and I really liked the story line. We will miss the wonderful friends we have made in the Philippines. Both Missionaries and Filipinos. I know we have all been friends before and sorry we had to wait so many years to be reunited.

The PET Scan, "Laughter Is The Best Medicine"

"So many tangles in life are ultimately hopeless that we have no appropriate sword other than laughter." ~Gordon W. Allport

 Steve, Marcia and I showed up at St Luke's Global for a PET Scan and CT Scan. These tests reveal more detail of the lesions in my lungs and determine if there are lesions anywhere else. Filipino people are so sweet and service oriented that I felt like the Queen that Marcia assures me that I am. Steve had to go get some paper work so Mar went back with me. After I put on the "gown" which consisted of pull on bottoms with a draw string and a wrap around top with ties we realized how cute and comfortable they were. So Marcia being Marcia asked if we can buy some. Filipino people will not tell you no so of course he said we could and he would find out how much they were. We bought 2 for me and 1 for Marcia. We decided that we would wear them to the going away party. We tried to talk Steve and Jeff into getting some as well but, the boys being "the boys" respectfully declined. The techs all look they are 12 years old but I have never had a blood draw or IV that was completely painless until now. After the IV for the chaser was in the tech said that I must restrict my talking for one hour. Yeah like that is even remotely happening with Marcia and I in the same room. Marcia, "Really, you expect us to not talk. For a whole HOUR. Have you not been here for the last 30 minutes and observed our interaction? Sorry, but it isn't going to happen! Explain to me why." Tech, "The chaser that we just injected follows the blood vessels to mark the way for the dye and it collects in the most active vessels. So if you talk a lot your mouth will glow. Please don't stress your mouth!" After we got up from the floor where we both fell from laughing so hard, Marcia had a great idea. She is a translator for the deaf and since I have always wanted to learn sign she decided to teach me. My first phrase--Don't stress your mouth. We then proceeded to give people we know their sign (name.) When friends are signing about people they know they pick a word that they associate with the person followed by the first letter of their name. We came up with some pretty silly "signs" for people. She taught me some pretty great stuff. The silence was often interrupted by bouts of hysterical loud laughter, but I did not speak. We figured laughing was OK because it would make the markers collect in my lungs where the cancer is anyway. The lesions lit up like a Christmas tree! I will cherish the fun time we had. The two of us in that little room, sharing, caring and just being together. We waited the hour to let the chaser circulate then off to the scanner. It only took 40 minutes. As I was walking out I asked if I could speak. He said I could I told him I had been a good girl and not talked for the whole hour, but there had been some uncontrollable laughter. He grinned at me and said, "Yeah, we heard!"

Marcia and Jeff, “Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”

“A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked” Bernard Meltzer

I'd like to introduce you to Elder and Sister French (Jeff and Marcia). Marcia is the Mental Health Advisor for the Philippine area. She is my therapist, confidant, cohort in crime, "Jack" watching partner, best buddy, eternal friend, my other me. She is definitely the princess to my queen. Steve describes our relationship as indescribable. The fun, happiness, and exuberance for life that we portray when we are together is inspiring, contagious and at times, I am sure, obnoxious. We have been known to discuss a gospel principle for 4 hours non stop, burst out laughing at any given moment over something that happened days ago, to yell "Julia Vargas" randomly when asked "What street is that," and walk down the mall arm in arm or holding hands. I have no words to state my feelings for her. I feel, understood, excepted on all levels, valued, loved, non threatened, and respected, but most importantly to me I feel liked just as I am. I guess the closet thing to describe our relationship is unconditional love. The best thing about this friendship is that all four of us like "all four of us. Steve and Macia tease each other constantly. Steve has become very fast in covering his ears when he makes a smart remark to protect himself from Marcia's incredibly accurate ear flick with her finger; and Jeff and I have so many of the same likes that it is amazing. We often joke that Marcia is the feminine Steve and Jeff is the masculine me. Our Taco Monday Family Nites, Saturday Grocery shopping, our trips to Tanay to buy (it's a secret!), and marathon "Jack" nights are never to be forgotten, not to mention the Burger King runs! Marcia and Jeff are our guardian angels sent to us from a kind and lovely Heavenly Father who knew of the struggle we would face. After the diagnosis I apologized to Jeff for the hole I was about to leave in their life and his comment back to me was, "It won't be for long." That was the most comforting thing that anyone could have said to me. Marcia helped me through the shock phase by telling me that whatever my reaction was, it was the right one for me. She then waited patiently for the anger phase and when is finally exploded about 3 days later at something so totally removed from what was going on she calmly explained what was happening. They have been there for us in every way and I know that they will continue by our side every step we take from this point on. Love you "Fred" and "Marcia, Marcia."

Shock and Awe, "There's a Bad Moon Rising"

Credence Clearwater Revival  I see the bad moon arising. I see trouble on the way. I see earthquakes and lightnin'. I see bad times today. 

Monday June 10, 2013 was just another day in the life of the mission. First thing that week was my annual chest x-ray. Hilda the x-ray tech took the picture. I dressed and was waiting in Dr. Jackson's office. He came in and said he needed a side shot because it gave more information. I knew immediately. As I was dressing after the second picture Steve came in and said that Dr Jackson wanted to see us in the x-ray room. Oh,oh, "There's a Bad Moon Rising." Boy was I right. Five cylindrical unknown abnormalities, 4 in left lung, 1 in right. Off to kidney doc. PET and CT scans ordered. We sent the x-rays to Utah to a friend who is a radiologist and he found eight spots that he called lesions, 5 in left, 3 in right. Prognosis 3 to 6 months. As we say in our family, no muey bueno. By Tuesday we made plans to return home Friday morning. Our daughter Hillary was moving to The Marshall Islands the following Tues for 3 years and we wanted to see her family before they left. In the mean time, our friend in Utah had requested my prior chest x-rays. His findings were a big shocker. Nov 2011 x-ray was clear. April 2012 x-ray was not. It was noted that 3 tumors were found in the left lung and a follow up CT Scan was recommended. We were never advised of these findings. We realized that we would never have gone on our mission had we known and that it was really a chance of a lifetime. We have grown so much spiritually and felt that we were truly blessed to have spent this last year together.

The Beginning, "What You Don't Know Can Hurt You"

"To best serve yourself, gain knowledge and it is in that state that you will reveal to yourself truth which will empower, thus serve you, rather than dis-empower and limit you."

According to Dr. Tim Taylor,(not to be confused with the Tool Man Tim Taylor from Home Improvement) it all started between 8 and 13 years ago. It began like a tiny grain of sand in an oyster. This story would not, however, end with a beautiful pearl, but a horrible nightmare. One tiny stray cell with mixed up coding. This invasive intruder would silently grow into a monster three-fourths the size of the kidney it called home. The first few years the menace was not noticed. As time went by I began feeling week. Because of Myasthenia Gravis that I have had for over twenty-three years the weakness was not anything new. Steve kept telling me that it was not MG and that I needed to see a Dr. He knew something was wrong. The PA I went to told me that he thought I was out of remission from the thymectomy I had had in 1992. But said he would run blood test to humor Steve. So we dealt with it. I was notified that I had low iron and either had colon cancer or an internal bleed because my iron level had dropped so rapidly. It was then that he revealed that my iron was low a few months ago when I had had the insurance physical but he hadn't said anything then because it was borderline low. Tests were negative and the PA decided it was just MG rearing it ugly head. We adjusted our life style of horseback riding, scuba diving, and motorcycling to enjoying the corvette and reducing physical activity. We enjoyed life for a few years traveling to corvette rallies, even going to Nashville for the Corvette 50th Anniversary. End of November 2009 found me at Disneyland with our two daughters, Shari and Hillary, and their kids. On the 3rd day while watching little granddaughter Izzy as the others went on the sky ride I suddenly became very week and dizzy. We went to the hotel and I slept all night and all the next day. As long as I didn't eat anything I was fine. We left for home and I felt a little better on the drive but still could not eat. We met Steve on Sunday morning because we were flying to Tampa for Steve's back surgery. While there I could only eat baby food. We were quite a pair the 3 weeks we stayed. We returned home on Dec 22. I went back to the Dr and he really was no help. Just said I had to eat and if I wanted he could give me an iron infusion because I was becoming severely anemic. He made it sound like it was my call but didn't think it would help. His colleague agreed,so I just went home to try to adjust to my situation. 463 By this time I can see why I was reluctant to go back to the Dr. During the 7 years of pure "hell" I went through before the Myasthenia diagnosis I had been told my illness was, in my head, that I had Lupus, or MS. While being treated for Lupus, that I didn't have, with staggering amounts of prednisone, loosing my hair and going into kidney failure I went to a Neurologist, Dr John Foley, in Salt Lake. He restored my faith in medicine when he diagnosed MG before I had even sat down and that I had probably had it from birth, which is very rare. What a relief that was. Since that diagnosis no matter what illness I presented with I was always told it was just MG. I guess I just gave up this time. By the end of March I was so sick I had lost 40lbs and had to walk with a cane. I changed doctors and was diagnosed with Renal Cell cancer at the first appointment. Removal of the left kidney was performed the following weeqk. One tumor the size of a small lime and one tumor the size of a walnut. Stage 1. Dr. Taylor said I would have died within 30 days because of low iron. The pathologist gave encouraging news that in his opinion it had not metastasized, but that I needed to have a chest x-ray every year for 5 years. Dr. Taylor told us at that time that metastatic renal cell cancer does not respond to radiation or chemo so if it spreads not much can be done. Life went on. Twenty-eight grandchildren became the light of our lives. We each bought our Harleys and spent the summers scaring everyone on the road as we rode our bikes everywhere. What fun. We moved to Salt Lake and decided to go on a mission. Even though I had a clear lung x-ray in Nov 2011 I had to have another one April 2012. We were told that they would call if there was a problem but to consider it clear if we did not hear from them. We did not receive a call and the Dr. signed our mission physicals. Off we went to the Philippines as the first Wheelchair Directors for the church for LDS Charities. It was wonderful beyond words. After 7 months we were assigned as the Country Directors for Humanitarian Services when a new couple came to take over the wheelchair initiative. We were able to travel all over the country doing water and food projects and calamity relief. What a wonderful experience we had. See our mission blog at: ourphilippinemission.blogspot.com