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 areas...it 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 me....it 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!
Soooo....you 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

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 cure....it 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...so 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!

Headed to the Happiest Place on Earth

     Well, there's been lots going on this past month--a few chemo treatments, lots of school stuff, skyping with Jarett on Mother's Day & some CT scans thrown in also.  My CA-125 #'s had very slowly crept up the last couple of times, & this lovely nodule in my right chest started growing & getting tender again--darn, darn & double darn!  I'd been having a few other weird symptoms--which are probably normal signs of aging--but having cancer kind of throws a new perspective on all that & it's easy to get freaked out.  So, Dr. Prystas ordered some CT scans, which look pretty much like the ones they did 6 months ago.  The nodule looks the same, & the fluids in my chest & abdomen actually look better on this latest scan.  It's funny how once the Dr. says there's nothing new there, most of those weird symptoms just go away--I know, it's all in my funny head!
     Anyway, those #'s have been pretty good indicators of what's going on in the past--& so has this nodule in my chest--so I get this week off of chemo & we'll begin a new drug next Monday.  This new one is most likely going to make me lose my hair--which is surely a loss since it came back in so lovely (can you feel the sarcasm dripping?).  I'm gonna have to start working on my top-of-my-head tan quickly!  Fortunately, the hair loss doesn't seem to coincide with the nastiness of the other side effects--they should, hopefully, be easier than what I've been on.
     So, with all that said....I'm heading to Disneyland with Vern, Kali & the ladies from the dental office.  We're headed out for a little weekend retreat--driving in the suburban straight through today & back on Sunday.  I am totally excited for this trip!!!  2 1/2 years ago, I had to miss my trip with them to Orlando when I got diagnosed & had my big surgery.  They are such fun to be with, & this is going to be a great trip! My tender mercies this week?  No chemo effects for Disneyland & Jarett was transferred yesterday, so I don't have to drive right by the freeway exit where his apartment was & have to keep myself from stopping to give him a big hug--I don't have any idea where he is now...& won't until he emails me next Monday.  The Lord is really watching over me--I feel Him every day!  Love always, Kim

A Trip to DC and a Hard Week

     While Vern & Kali were off to Peru doing dental work & exploring, I took the boys to Washington, DC with my mom & younger brother, Matt.  We had a great time visiting there, & I had lots of strength & energy.  I don't think there was anything that we left undone--which is amazing, considering that everyone else & their dog were there for Spring Break & the city was a bit crowded.  Matt & I even did some driving in the DC traffic!  We were met there by our Hatch cousins, who live in Virginia, & really enjoyed experiencing all the wonderful history of that area with them.  We just wish the trip could have lasted longer!
     The day after we returned, last Monday, I went in for my chemo treatment.  I seemed to be doing well, & there weren't any changes with the physical exam, but the next day my CA-125 #'s came back, & they've gone from 58 up to 71.  It's not a lot, but enough that we need to make changes (again).  Dr. Prystas is recommending that we keep doing this treatment, but do it 2 weeks in a row, with 1 week off.  Hopefully, this will be keeping enough of the drugs in my system to keep the cancer at bay.  That same day, we received the news that my cousin, Eric, & his family had lost their 17-year old son to an unexpected death.  My heart has ached for them, & my spirits have been pretty low all week.  What a blessing it has been to watch & listen to General Conference!  It truly is a healing balm to the soul.  It is spiritual nourishment to my heart to be able to feast upon the words of Christ & His gospel at this time.  President Uchtdorf's message this morning has seemed especially relevant to life's circumstances.  How thankful I am for the "light" of the Savior, & the sure knowledge I have that we need not live in darkness, doubt & fear...for He has overcome the world & we can put our trust in Him.  I am continually thankful for your faith & prayers on my behalf.  Hopefully, there will be better news to share in the future.  Love always, Kim

     It's Monday & I'm sitting here waiting to get an email from my favorite missionary, so I thought I'd write a quick update on life & the new chemo.  After receiving 4 treatments in a row, & receiving the word that it was working well, Dr. Prystas decided to back off a little bit & let me do it every other week.  I saw her last week for my check-up & chemo, & told her that the 5 days previous to that was the best I'd felt since November.  When they called me the next day to give me my CA-125 update, Jeri said it was not wonder I felt so good--my numbers had gone from 160 down to 58 with only 2 treatments!  The week I get chemo I feel so crummy, but I feel so great the week I have off!  My kidneys & other organs seem to be tolerating the medications well so far.  The only problem is my white blood counts haven't been as high as they'd like, so Dr. Prystas had to adjust the dosage down a little bit last week.  Apparently, my bone marrow has been suppressed a bit with all the chemo I've done over the past 2 1/2 years, so this is my "new normal".
     On the Mondays I'm not doing chemo, I try to stay home to chat with Jarett in CA.  Today, while I was waiting, I deep cleaned my bathroom--whoohoo!  When I was deep cleaning a couple of weeks ago, Heidi told me I should be having Stella (my fabulous housecleaning friend) do that for me when she comes every other week.  I said "no way"--cleaning out drawers & cabinets is a job you can only do yourself.  Can I just say that I loooove cleaning?  I know--I'm weird.  I've decided that I got that gene from my Mama Enid.  I think she was in her 80's on a ladder cleaning out her rain gutters.  Anyway, I just loved cleaning my bathroom today & it looks fabulous.  Anyone could come & have dinner tonight in my master bath--it is that clean.  I did alot of thinking while I was working, & I thought how much I just love the springtime & deep cleaning!  As much as I love my fresh bathroom, I love that we will soon be getting a fresh start outside, too.  Pretty soon all that dirty snow will be gone, & green grass & my tulips & daffodils will start to bloom.  I love that it'll soon be Easter.  As I worked, I thought about the Savior & how He has made it possible for all of us to get "fresh starts" in our lives.  I wish that I could get rid of my bad habits & favorite sins as easily as I could get rid of the old make-up & lotions in my drawers.  Sometimes I feel as if I'm a completely different person 2 1/2 years later, & at other times I feel as if I'm never going to overcome my weaknesses & sins.  I am grateful that the Savior is patient with me, as I continue to learn & grow towards becoming what He knows I can be.  I am continually thankful for the faith & prayers on my behalf, & the dear friends & family who are always supportive.  This month will mark 30 months since my diagnosis--I could never imagine that I would be blessed to still be here.  All my love, Kim

New Chemo is Working

I know it's been awhile since I've written--it's been kind of a tough few weeks.  I began the new chemo, Cisplatin, on the 14th of January, & have had a treatment each week for the past 4 weeks.  The side effects the first week were awful--migraines and severe nausea--so they've given me a little something extra called "Emend" that has helped considerably these past few times.  I've never had to do chemo every week before this time, so it's been a bit of a challenge mentally & physically.  Yesterday, Kathy called with the good news that my CA-125, which had been up to 346, had gone down to 160--super yipee-yi-ay!  They're also going to let me have next week off, which is a HUGE relief for me.  It's been kind of tough to only have 1 or 2 days where I've felt okay, & then have to gear myself up to go do it again.  By last Saturday, I would start feeling sick to my stomach at the mere thought of going in for chemo...I know it's all in my head, but feels very real.  I'm not losing weight with the nausea..just the opposite.  I lay around constantly snacking, trying to keep it at bay.
One of the highlights to this last month has been Mom getting an iPad.  I have to say it's been wonderful because Jarett's p-day is on Mondays, & that's when I've been doing my chemo treatments so I can be feeling better by the weekend when the boys are off school.  I was kind of bummed to think that I would be missing his emails while I was hooked up to the IV, but Mom just brings her iPad to the appointments, & while the infusion is going on, I can get Jarett's emails & do a little back & forth emailing during the half hour he gets on the computer at the public library in Fontana, CA.  Ah...the blessings of modern technology!  What a great world it is we live in!
I'd been dreading going in again for the chemo this week, when I reminded myself that the chemo is my friend...it is how Heavenly Father is working His miracles in my life & I need to have a feeling of gratitude for it, instead of being such a whiner.  Having that attitude throughout the past couple of days has certainly helped me...I don't feel like it's been quite as bad this week.  It just goes back to what I'm always harping on my kids about--having an attitude of gratitude makes a difference in everything.  Love always,  Kim

Happy New Year 2013

     This will be a short update...I had a chemo treatment just 3 days ago, & am still feeling the effects, although I AM out of my pajamas as I write this--that's always a good thing!  I got to have a little extra time between treatments due to the holidays, & it was wonderful!  Our Christmas was quiet without Jarett, but very good.  I wish I could say the same about his.  We are waiting for the mail to arrive today, & hopefully there will be a letter from him.  We didn't get one after Christmas, as we expected, & just learned this week that he had the stomach "flu" that was going around the MTC & made at least 250 missionaries sick over the holidays.  As I have felt sick the last couple of days from my chemo, I've just thought how grateful I was to not have to share a bathroom with a whole bunch of other people who weren't feeling well--that is certainly a blessing for me!
     I did get word on Thursday from Dr. Prystas that the Topotecan hasn't been working.  My CA-125 #'s have gone back up--to 294.  So, once again, we'll be trying something else.  I've been through several drugs already, & there are only so many that work on ovarian/breast cancer, so this is a big disappointment.  I've been able to get about 6 months out of each drug I've received, & I was hoping to get at least the same out of this.  I've already thrown myself a "pity party" the past 2 days as I've been down, but woke up feeling better today.  We had our FHE last Monday, & set goals for this month on developing charity that included "suffering long" from 1 Corinthians 13:4-8.  I was thinking more in terms of my being more patient with Vern & the boys, but apparently I'm also going to be learning to "wait patiently on the Lord."
    On the bright side of things....my parents & I went to the Donny & Marie Christmas concert at Abravanel Hall after Christmas.  It was a great concert, & at the end of it I was surprised to get to go backstage & meet Donny after the show.  My sister, Julie, & my aunt, Phyllis, arranged it all.  What a special treat!  I only got to visit with him for a couple of minutes, as he was pretty tired & had been ill beforehand, but he was so gracious & kind.  Here's the only picture I got of the two of us--you'll notice that I look old enough to be his mother!