Kim's journey

Kim was diagnosed last Thursday, September 16, 2010 with ovarian cancer. As Kim's Family, Friends, Neighbors and Fans - we have started this blog to help share information, updates, support, and love with each other during her next few months of surgery, treatment and healing. We will try to update it whenever we receive information. Please feel free to leave a comment expressing your support, love, and encouragement anytime - as that is how we will all grow and strengthen each other - especially Kim and her family. We love you Kim, and our faith, prayers, and total support and dedication are with you as you embark on this "Journey"!

Sunday, July 21, 2013

Waiting for a door to open...

Wow...a lot has happened in the past 3 weeks.  After my chemo treatment on July 1st, my CA-125 numbers came back even higher.  I was able to get in on July 5th and had a PT scan and consulted with the radiation oncologist.  The good news was that the ovarian cancer didn't seem to be real active in my abdomen, but there were 4 spots that showed up on the scan in my chest.  One is the nodule I can feel in my right chest wall, another is in my right lung, and one in the lymph nodes under each armpit.  When I met with the radiation oncologist, she said that she could get to all those areas with radiation, but said that as the cancer has obviously metastasized, doing radiation isn't going to do very much other than just shrink those won't really be killing the cancer cells that are flowing through my bloodstream and lymphatic system.  She said that she felt that trying to get in on some clinical trials of a new chemo drug is going to be my best option.  When I spoke with Dr. Prystas, after receiving the PT scan, she felt exactly the same way.  She recommended that I go to MD Anderson Cancer Center in Houston, TX to consult with them and see if there are any clinical trials going on there that I could participate in.  I've learned in the past two weeks that MD Anderson is one of the two premier cancer treatment centers in the U.S.  The other is Sloan-Kettering in New York.  I understand that most of the cancer research and clinical trials goes on at these two centers. Dr. Prystas then sent me to Dr. Reading last week to have a biopsy done of the nodule in my chest, because she wanted to have a little bit more information as to whether we were dealing with breast or ovarian in the chest area.  Well....because everything I do has to be unusual and weird, it ends up that this big old tumor in my chest is ovarian cancer.  Who would've thought?  Duh....I should have gone to Vegas and bet on that happening!  Anyway, Dr. Prystas sent the referral off to MD Anderson just this past Monday, and they were supposed to review my records and call me this past week to schedule me to go down there to meet with their specialists and have tests run.  I was excited to get home from exercise class on Wednesday morning and learn that MD Anderson had called me...I shouldn't have been so excited.  They were only calling to tell me that they were "out of network" for my insurance, Select Health, and therefore, couldn't see me until I received approval from Select Health.  I can't possibly express in words what a frustrating morning that was, as I spent hours on the phone, trying to make the patient advocate person at Select Health understand what my predicament was, and trying to get the reviewer at MD Anderson to schedule me an appointment (she didn't.)  The bottom line of the past 4 days is this: 
1)     I have cancer that my doctors and the specialists at IHC and Huntsman can no longer treat.
2)     I have been on the same HMO with Select Health for 12 years (we can't get the really good insurance because Vern is self-employed), and apparently there are NO "out of network" benefits on our particular plan.
3)     Select Health is reviewing my request to go to MD Anderson, but they have up to 2 weeks from last Wednesday to decide, and if they do approve my going to Houston, they will only approve 1 procedure at a time--ie. they will only approve my receiving one consultation with a physician there.  Any other procedures needing to be done, will also have to go through the system to receive approval.  MD Anderson doesn't operate that way--they practice in a multidisciplinary way with all sorts of specialists working under one big roof to coordinate your care.  They tell patients that when they get an appointment, to plan on being there from 3-7 days while you meet with a variety of specialists and have tests done.  All of this is done outpatient, while I cover all my travel and lodging costs on my own.  Operating in this way would quite possibly have me out there a couple of weeks.
4)     I can't even find out if there are any clinical trials I could participate in, until I go through this procedure....and MD Anderson won't schedule me an appointment until I get approval from Select Health.
5)     I asked about what the approximate cost of this first week of tests & consultations would run, and they couldn't tell all depends upon what they do.  They said that "self-pay" patients (ie. patients without insurance that have money, are expected to put down a "deposit" of $16,800.  Mind you, this is just a deposit for seeing me that week...not what it will actually cost.  When I asked if I could schedule an appointment if I sent them the money, I was told that because I have insurance, I would need their approval before I could schedule anything.  AAARRRGH! can see why I'm just waiting for another door to open.  It's been a tough week to get through.  I've had to keep in mind, though, that the Lord has given me assurances throughout these past 3 weeks that this is the direction I need to take.  I have been blessed by the great exercise of faith, fasting and prayers on my behalf by my family and friends...they have been tangible, and are what has kept me going.  I have received many "tender mercies" through the sweet acts of service, (given often when people didn't really even know what I was going through), and through the spiritual blessings and comfort I received as I was preparing my lesson for Sunday School today.  God is truly good, and I know He is continuing to watch over me and my family.  Love always, Kim

Monday, July 1, 2013

Lots of trips & Bad Numbers

     I haven't written for awhile because I've been traveling, and waiting for good news to share. The trips to Arizona with Heidi and to Nauvoo with my family, Nana and the Leishman's were great! Nauvoo and the other church history sites are so inspirational....I loved being there! The Spirit there is powerful, and it is so good to be reminded of the difficult challenges others have faced and triumphed over. It helps me to continually be reminded of how the Lord blesses those who exercise faith in Him, and how His vision is eternal and perfect. I consider it a tender mercy that I was able to be strengthened in that way before returning home to learn that my CA-125 #'s have gone up. This new chemo doesn't seem to be working, and the lump in my chest has not decreased, as it usually does when a drug is working. The doctor's don't like to discontinue a drug after just one round, but my CA-125 has been a pretty reliable indicator so far. Sooo....I did my second treatment in this second round today, and I will be meeting with a radiation oncologist this Friday to see if radiation of the lump is an option. Dr. Prystas may order some more imaging tests to see if anything can pinpoint just exactly where the cancer is besides my chest.
     The big problem I'm facing is the fact that I've now run through all the drugs that treat ovarian/breast cancer. It's too soon to try and recycle chemo treatments, so I'm kind of up a creek without a paddle! There is another drug out there that works on kidney cancer, and shows promise of working well for ovarian, but it's not FDA approved yet to treat with ovarian. So, of course, my insurance has denied our request to use it and pay for it. It's not a just shows promise of buying more time for me. Because it's pretty expensive (I didn't even dare ask the price at this point), we are trying to see if the pharmaceutical company will somehow work with us on getting it, and doing it at a reasonable price.  So, if anyone has energy for extra prayers--there's a specific one for you.
     The hard part about all this is that we all figured that when I got to this point, I'd probably be ready to give up treatment because I'd be in pretty bad shape. Most of the time, I'm functioning pretty well, so this is kind of tough emotionally. My desire is to continue to be here awhile longer. I'm not sure yet exactly what Heavenly Father's plan is for me...I still feel like He's okay with that's what I'm operating with until He tells me otherwise. Vern gave me a very sweet and tender Priesthood blessing yesterday, and we are all doing good.
     I don't know how many, or who, are still reading this.....but I am continually humbled by your sweet thoughts, prayers and faith on my behalf. Jesus Christ is truly a God of miracles...I am a walking testament to that fact! I love Him, and my heart is full of love and gratitude for all of you!