"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.