Struggling Days

"God is my refuge and strength an ever present help in times of trouble'.
Psalm 46:1

I'm sorry I haven't been more faithful at writing, and I know many of you receive updates about my condition here - I've asked a couple family members to fill in and keep you updated if I'm not able to in the upcoming weeks.

I've been wanting to write about alot of 'happenings'... from an awesome TX deer hunt, a great Thanksgiving, and how touched I've been with all the benefit support, cards, letters. and especially the prayers throughout this past month. I'm sorry I just haven't been up to it.

So in summary.....
I continue going to Venderbilt in TN and am hopeful scans on the 29th reveal some regression of the disease. I am very weak, and receiving IV fluids a couple times a week.

In the mean time.... thank you for every prayer, positive thought, and the many kind deeds. Words can't express their importance.

Please keep praying

Top of the Roller Coaster

God is good all the time...all the time, God is good!!!

Today is answer to prayer.....I officialy got into the study...... tears of joy and relief flowed!! I will have to go back to Nashville next Tues/Wed to 'finish' getting in and getting my first dose of treatment. Then I will be going back every 3 weeks.

All of this happened today as Eddie and I started our trip to Texas that was so generously given to us by our group of hunters back home. Can't wait.....I get to get my mountable buck...if I'm lucky in this endevour, I will be posting pix on facebook!

Tough Days Continue.....

"But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him." ~ Hebrews 11:6

Just a short note to tell all of you that yesterday was tough. I was told on the phone on the way down that I may not get into the study because my white counts were so low again. We immediately started a prayer chain to storm Heaven with many pleas for a better result on the bloodwork I had to get when I got to Nashville. This morning we'll find out the results and learn for sure if this is the way the Lord wants us to go.

Update!!!!

We got the news we have been waiting for....we're in Nashville and have started testing (again) to make 100% sure I can get in the clinical trial we've been hoping for. Please pardon any confusion you may feel...just don't feel alone. It's been one thing after another, but, it's always IF. Well, if all of the if's and if the stars align just so, I'll take my first dose on next Tues. and we'll get this going.

And She Waits.....

Couldn't let my blog friends sit and wonder what's going on...again. I heard from Vanderbilt and they will get in touch with me NEXT week....the BRAF test isn't done yet....and so I wait....some more. I have to be honest, I haven't felt the greatest the last couple of days and I just want to get this going!!

"Exquisite Timing"

If you have enough time, you have enough everything. ~ Unknown

For the first time in my life, I was told I have "exquisite timing" and I don't know if it could've been said for anything more important! I'm pretty sure the incredible news from Tennessee has reached a lot of you, but, for those of you who don't know....I was able to sign up for another clinical trial.

Dr. Sosman (my new doctor in TN) is the one who said the 'exquisite timing' thing...he said it because the trial I'm in opened on Tues.; my appointment was on Thurs.; and it closes on next Tues. There was only a one week window of opportunity for me to get in it. He is very optimistic that I may buy some more time with this trial. It is a pill I will take every 12 hours and I'll be able to do it from home. I need to go back within 2 wks for scans, blood work, etc. IF I 'pass' I will recieve the pills. I will then be going back every 2-3 wks. for quite a while and then once a month.

There are only 93 people who have ever taken it so they don't know a lot about the side effects, but he feels confident I'll still have some quality of life. The med is from GlaxoSmithKline and it only has a number: 8436. Here's praying it's my lucky number (to go along with the 'exquisite timing' I have!)

Company

Oh, yeayeayeayea.................

Thanks, Denise for coming to spend time with me in Nashville. I had a great time (and that pizza...yeayeayea!!!)

We enjoyed spending time with you and Mark, too. Thanks so much for dinner and the grand tour of Nashville. It really IS a pretty skyline....yeayeayeayea!!!!!

Going back in a couple of weeks....we'll see what Mark's job lets us do....love you.....yeayeayea

On Our Way

"Life is not measured by the number of breaths we take, but by the moments that take our breath away." ~ Author Unknown

What a wonderful weekend I had! I was able spend time in Branson with my mom and sis on Wed. and Thurs. (yes, my weekend began on Wed. this week!) We had so much fun! Not typical Branson trip, but really enjoyed showing them the Branson Landing, the Gift Shop, etc. We even shopped on the way down...did the girly thing at the beauty salon and everything!

On friday I was able to spend the night in a hotel with Amy and Kelley. We enjoyed dinner out and then shared a special time, just the three of us.

Saturday was unbelievable! There were 14 of us who were able to go ziplining. It was so much fun! It was so awesome zipping through the woods. (Talk about moments that take our breath away!!) We could NOT have asked for better weather, either. I appreciate every one who went (along with our couple of 'dinner only' fam!) We ate at The Rivers Edge which could be considered the edge of the world. It took us forever to get there! Perfect ending to a perfect day. I'm only sorry that the others who wanted to go couldn't. There were only 14 allowed in a group! Not only did I learn HOW to zipline...I was able to judge that I was able to do the first four lines....but, definitely NOT the next six!!! Well, I can mark that off my bucket list!

Sunday was pass out day!!! I didn't even wake up till 11:00 then struggled along thru the day. I can go for awhile and then it just all catches up with me. I get so worn out.

Had my blood work done again today and am relieved to say that my white counts have stayed up and I'm definitely able to go to Nashville. I also found out that my platelets, potassium, red blood cells, Hemoglobin and Hemocratic counts are really low...we'll keep working on that.

New Tactics Succeed!

"No one knows the story of tomorrow's dawn." ~ Ashanti Proverb

I was so upset about my counts going even lower. I have been on the phone with Vanderbilt regularly and through many different channels they have traveled, it was finally determined that I could use Neupogen. This is a shot of 'fake' white counts that are intended to boost the counts of people who need improvement in that area. The shots worked beyond my wildest dreams. I now have to get my blood work taken again on Monday and hopefully my body will be able to sustain the better counts.If it does, I will keep my appointment on the 21st and begin all of the screening tests and they will determine if I am a good candidate for the clinical trial....the ones I already thought I was in if my counts went up. This journey is a constant roller coaster.

Ellis Fischell!! & Blood Counts

"Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith". ~ Henry Ward Beecher (Thanks, Karen, for giving me this quote!)

Went to Ellis Fischell yesterday. It was so good to be back there and I actually liked the new doctor. No one will ever take Dr. Anderson's place as far as I'm concerned...but, this doctor is wonderful in his way! What a relief it was to me...I've had 3 months of Siteman and Dr. Linette....it was like going home!!!

I did get some bad news, though. My counts have actually dropped a little more since a week ago Monday. I've got to get these up....I'm going to start eating a high protein diet and trying to rest a little more. I'll get another set of labs done next Monday to see if we're making progress. Please keep praying for this!!

Nashville Here We Come

When a door gets closed, God opens a window

I've always heard this saying (or whatever the actual quote is) and I really understand it now. I can relate to it in my situation. I know I've been asking for prayers for many different things over the last few months...but my situation changes so quickly it's hard for me to keep up!

Today Vanderbilt-Ingram Cancer Center in Nashville called me and set up an appointment for me for Oct. 21st. They want to do testing and see if I can fit into 1 of 2 clinical trials that they have determined I may fit into by preliminary criteria.

Thanks for your prayers.....continue to pray that my counts come up....I won't get into any trial w/out them climbing. We are total believers in the power of prayer!

New Request

"Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand" ~ Emily Kimbrough

I'm beginning to get some good responses from Vanderbilt in Tennessee. They are really trying to 'fit' me into a good clinical trial. There is a major stumbling block, though. Because of the ipi treatments my blood counts have pretty much bottomed out. I won't get in any trial - anywhere until they go up. They should do this natually as the ipi gets out of my system or there are drugs available that can help. I am going back to Columbia to Ellis Fischell Cancer Center on Monday...maybe they can help me with this.

I want to ask all of my family and friends to please pray for my blood counts to go up so I can be considered for one of these trials I'm hoping for! Thank You!

Bump in the Road

God's will. Nothing more, nothing less, nothing else. --- Jean Finley

It is so frustrating to be in limbo....please pray with us that God will open a door and Eddie & I will be smart enough to go through it.

Down But Not Out

In all things give thanks

Today did not go as we had hoped. The Ipilumumab has not worked for me. It's difficult and disheartning to get that news and see scans showing progression of the cancer, but it was only a moment until we were asking..."what next"??

It seems that I DO have the BRAF cell mutation that will allow me to get into the clinical trial with the special med designed to halt the cells ability to divide so rapidly. (More of this as I learn more!!)

Suffice it to say.....We are down but we are NOT out!! Hanging in there mentally as best as we can.

Waiting Some More

"Cast your cares upon the Lord, for He cares for you." 1 Peter 5:7

I am really struggling with all of this waiting. I feel like I've been waiting since June when I found out about the cancer coming back. I will finally know on Mon. whether the infusions of ipi are working for me. The scans will also show the extent of the cancer at this point.

I'm imagining Monday will either be joyous or a struggle. I have been getting some preliminary testing done to have other options if it's not working, so it won't be as long between treatments since I'm getting it done now...that's a good thing.

I want to thank all of you for your prayers through all of this.

4th Infusion

"In God I have put my trust, I shall not be afraid....Psalms 56:11

So relieved...my bloodwork looks much better this time than it did 3 wks. ago. Dr. Linette seems pleased. I'm pretty sure I've never had that many vials of blood taken for that many different tests, though! Kid you not...they drew so much that my port quit giving! It was actually pretty funny...the nurse tried everything she could think of but ended up having to access the inside one to finish (I have what they call a 'double port'). Anyway, a new experience for me.....those don't happen very often to me anymore in Cancerland!

Mom and I sure had another long day at Siteman again. We were there from 9:45-7:00. We left my house at 8:30.....that is a looong time doing all that (probably would seem a lot shorter if it was something fun)!

Well, that was the last infusion for this round. I go in again on Sept. 27th to find out how well it's worked. I pray it has done great things (or at least SOMEthing!) and I pray for God's will to be done...not just mine. (Can't help but pray they're the same!)

I've lost some weight (finally!) just wouldn't recommend this particular diet to anyone...

Take care all of my blog buddies!

The Simple Pleasures of Each Day

What matters, is not the length of the wand, but the magic in the stick -- Anonymous



Life has been good to us these last few weeks. We have been able to do so many things...after our little anniversary trip (which was wonderful!) we attended Eddie's class reunion. We were able to go with our friends, John and Ruth Farris, and we had a great time staying with them! Of course, it didn't hurt that John's got a cool new AR and we got to go shooting the next day!



On Sunday, the most incredible thing happened....our friends (and fellow hunters) and our kids went together and gave me a trip to 'scratch something off my bucket list'. Eddie and I will be heading to Texas this fall where I will be able to shoot a "mountable buck"...they have it ALL planned out and we will always remember this trip, I know. How generous everyone is.



This Labor Day weekend was packed full of family.... my brother & sis-n-law, Don & Angie and my niece, Lauren came to mom's and we all had such a good, laid-back weekend! It's always good to see them, but this trip was really important to me...I needed to see my big brother! I have not seen him since I was diagnosed with this last recurrence. I don't know all of the special connotations connected with birth order...but I love being the baby of my family! I have been so blessed with my parents, brother and sister. I also enjoyed spending time with my nieces and nephew and their kids who live here in MO.

Finally, Eddie and I were able to spend Monday with most of our kids and grandkids...and my college roommate, "Motz" and her son at Nick and Amy's pool!! It was a great way to relax and end a full and special weekend.

I have been doing ok on the ipi. I don't seem to have side effects directly related to it according to my doctor, but have new symptoms that leave me uncomfortable a lot of the time. I try hard not to focus on that..I want to focus on other things more important!

Hope you are all well and reminding yourself each day to prioritize the special people in your life.

3rd Infusion

Faith makes things possible---not easy

Well, I'm getting my 3rd infusion of Ipilumamab. I feel lucky they are giving it to me. There are some blood test results that are concerning Dr. Linette. I'm anemic now, but, the thing that's concerning the doctor most is my pancreas. There are some counts that indicate it is not working as well as it should. He claims though, that there is no connection to the ipi, so he really doesn't know what to think. I'll just continue on with what I'm doing. Maybe bulk up on some red meat!

Had a great time with our family this past weekend at Lost Valley. All 5 kids, spouses (and Kelley's boyfriend) and all 10 grandkids were able to be there.....and I was right about the wonderful chaos we had!! Was great spending so much time together.

Tomorrow is Eddie's and my 9th anniversary so we are leaving town for a short trip....looking forward to some alone time together!

Making Memories

God is good...all the time!!

We have had so many good days! We had our 26th annual Lake Weekend that we get to share with six other couples from high school. We had a great time in the water and had a ton of awesome food! It is so good to share our lives with each other...even if it's only a few times a year. They are such special people to us, these 'friends that are family'. We rejoice with each other over the good things in life and are there to help carry the load of the bad times. We can depend on each other all the time. That's friendship!

This Wednesday, Kaden starts Kindergarten and I get to 'help' take him to his classroom. (Then I get to dry his Mommy's tears!!) That's ok, though. I cried my eyes out when my own 'babies' started school....it's a rite of passage!

This coming weekend our family is going to Lost Valley. We've rented 3 condos and are ready for fun! All of our kids and grandkids will be there....what wonderful chaos awaits!!

So far so good with the ipilumamab. No side effects from my second infusion...how wonderful it makes the quality of our days! (Not thrilled with this summer cold I've gotten...hoping it is on the way out!)

Physical Therapy going ok....they're trying to strengthen me. I am apparently not as strong as I used to be!!

2nd Infusion

"This is my command; be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." ~ Joshua 1:9

I am receiving my 2nd infusion of Ipi. They are really running behind today which makes for an even longer day than Mom and I had anticipated, but as Mom said, we've put the day aside for it anyway. Oh, well. The whole procedure is already starting to become routine which surprises me. Siteman is finally starting to 'feel' better because everyone I come in contact with is incredibly kind. Kindness goes a long way in helping people. It may just be their job but you'd never know it.

Dr. Linette reminded me (as if I needed THIS reminder!) that after this infusion is where I may start having side effects. I'm praying I'm in the majority that don't suffer any of the 'wonderful' things he described!

Keeping God as my constant companion and comforter as we travel this road.

Good Days

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and minds in Christ Jesus." --Phillippians 4:6-7

It's been difficult with no major symptoms from the infusion to feel it is actually doing something! Mind you...I'm not complaining!! This is so different from the last battle. The toxicity was so intense last time. Now, being more tired and somewhat weaker are the only symptoms I'm having. Actually, I don't know if that's from the ipilumumab or the cancer...kind of scary.

We are all trying to live one day at a time...enjoying each one for it's simple pleasures and trusting God with the rest.

I've had some incredible days since I posted last. We spent last weekend with my sister and her family at the lake and enjoyed it so much! Her friend generously allowed her to use their house for our enjoyment. We had so much fun in the water, on the jet skis (Amy and Kel, you have too much of your mother's blood in you!) and enjoying good food! It was sure a full house!!! There were many memories re-visited and many new ones made.

Got to eat lunch with Heather and the kiddos today....always special to spend time with them....we sure all love Olive Garden! Eddie would call it the Guccioni in us!

Looking toward spending a little time at the Gasconade County Fair next week...seeing people, watching Mason and the kids on the rides, and watching Blake and Brett show their pigs!

A down note has been becoming aware that I can no longer watch Mason and Ava for long by myself. My 'stroke' (right) leg has been weaker lately and I don't trust myself very much. I don't know if anyone can understand how hard it is to come to this realization, but there would be nothing worse than one of the grandkids getting hurt because of me. They are all (all 10 of them!) infinitley precious to me. Fortunately, I've had offers of help from several people so that I can still be with the kids. For these offers.....thank you.

Got Started Today!

"C ommit to the Lord whatever you do, and your plans will succeed." Proverbs 16:3

I'm actually sitting and getting my 1st infusion of ipilimumab....at least I feel I'm being proactive. I have not gotten any of the immediate side effects you can get so that's a plus! Praying this is the path God's led me down and that He will bless the journey.

"I sought the Lord, and He answered me and delivered me from all my fears."---Psalm 34:4

With the help of friends and family, I am trying to patiently (lol) wait for next Tues. to get here so I can finally get started on the ipi...I feel so frantic that there is nothing inside me fighting this cancer.

I have actually had a great week filled with visits:
*Mon. evening, Amy and the kids came over and Amy fixed Eddie and I dinner!
*Tues. was filled with tests and scans, but it didn't stop Mom from taking us out to dinner after... (yes..it's true...there is a theme here!)
*Wed., Denise Jennings and her son, Matthew came and spent time. We were able to catch up...it was great.
*Thurs. my niece, Jen and her daughter, Finley came up...it's always fun to spend time with them!
*Fri. Eddie and I got to keep Ava while Amy and Mason went to the Fair
*Sat. we get to keep Kurt's kids overnight and take them to church Sun. morning

Then on Mon. I get to go spend time with my college roommate who I haven't seen in TOO many years! Being busy definitely helps pass the time!!!!!

another step closer

His Grace is sufficient for me

Went to Siteman today for labs, tests and scans. They are required before I will be officially accepted into the study we're trying for. They're 99% sure I will so we'll go with that until we find out differently.

4th of July Bash

"God bless America, Land that I love...."

We were fortunate enough to be able to have our annual 4th of July bash again this year. It is so much fun for Eddie and I to host this for our family and friends! We have water for the little ones(or Grandpa diving in to cool off from frying!) games for the bigger ones and chairs for us older ones!! Thanks to Chuck & Carol we had plenty of fish for the Fish Fry (Eddie and Kurt worked too much to go fishing often enough this spring...oh well, they fish at Chuck & Carol's anyway!) While we ate our homemade ice cream and brownies, the Warren County Fair had an awesome fireworks display to finish off the night.

Thanks to everyone for their help this year.....we couldn't have done it without you!

Unfortunately, I found out I have a "severe kidney infection" from the Dr. in the ER in the middle of the night.....not the best way to spend the night...wouldn't recommend it!

The Fight Has Begun

"Peace I leave with you: my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

Today was filled with mixed emotions. I have been so anxious to begin some kind of attack and was finally able to do that. I met with Dr. Linette for the first time as his patient. We had actually met before when my son-in-law, Brian, was fighting his battle with cancer.

Eddie and I were leaning toward the option of ipilimumab...the new 'miracle drug' for melanoma....and finalized that decision as we talked with Dr. Linette. He is very confident that I meet the qualifications to get in this clinical trial and I pray he is right! We began the testing process today and will continue in the next two weeks. I will get my first treatment on July 13th if all goes through. Ipilimumab (called ipi for short) is an infusion I will get every 3 weeks for 12 weeks. There will be more tests and scans then to check my response. It is possible to do another round if necessary and my body continues to hold up.

The drug has very few side effects and the majority of people can continue with much of their daily lives. There are some (about 20%) who have a harder time. My sister, Karen, says its about my turn to get on some of the good end of the odds!

Meanwhile, I have been busy with many good 'events' as I've waited for all of this to get started. We were able to get special pictures of us with all 10 (yes, you read correctly, TEN) of the grandkids (Heather's Father Day present to Eddie), I have seen Kaden's T-ball games, been to Logan's 1st birthday party where we saw all of our grandkids, watched Lilly over the weekend, been able to spend time with Mason and Ava.....do you see a trend here? Our grandkids are very important to us! Tomorrow, though, is adult time...it's Karen's birthday (I won't tell which one!) and Mom, Karen and I are spending the day together. Life goes on!! (Thank goodness!)

June 30, 2010.....Hope in today's first step of battle

My mom wrote the poem below when I was little and I always 'pray it' when I have a big day ahead of me. Seeing my new Dr. today...hoping to get started on the new fight with my cancer! All of your thoughts and prayers are appreciated so much...can't describe how much strength Eddie and I get from them

"Lord help me through this day. Lead me and guide me all the way. Teach me to pray, help me to say, things that would please you come what may." --- Jean Finley

June 23, 2010....EXPECT MIRACLES

...."God is our refuge and strength an ever - present help in times of trouble"
Psalm 46:1

With many of my support group present - we met w/Dr Anderson to discuss treatment options.
As Dr Anderson explains to us while there is no medical cure - the treatment approach he recommends is a more moderate approach - geared to slowing the cancer down while keeping a quality to life. He explains it’s important for me to move forward making plans doing some things important to me (a special trip, etc)

Another aggressive treatment approach that would have to be done at Bethesda, MD is a possible option IF I would be accepted into the clinical trial but he cautions us - Pointing out my overall health condition has been compromised from the last aggressive round of treatment which causes concern as to how I would hold up in this approach through 3 - 6 months treatment. The quality of life would be very compromised due to high toxicity levels involved in this treatment.

I explain that I feel a strong desire to fight but at the same time, a strong desire to keep a decent quality as a priority. I hope everyone that loves me, and this affects understand that sometimes quality is more important than quantity. It’s important to me that I’m well enough to make some new great memories that include others I love so much.

June 16, 2010 - The fight is on again....
"... Put on the whole armour of God....."Ephesians 6:11
Today is the day I couldn’t be prepared for in receiving news that none of us - including the dr expected...the cancer is back and back w/a vengeance. Scans reveal several spots ranging from the size of a pencil eraser to half dollar in size in the liver as well as spots in the sternum lymph nodes, and left lung. Putting on the armor of God.....all things are possible!

Finally - New posts on their way

I’m sorry in the delay of posting these blogs...this is all new to me, but I
I plan to use this forum (along w/periodically asking family/friends for their help) to keep you updated with how I’m doing, treatments and any needs we may encounter.

A couple of things I’d like for each of you to remember is ‘Our God is an awesome God’ HE is the ultimate physician and with confidence and peace, I know He is in complete control of the situation and outcome. My sincere prayer is each of you remember that while we pray and EXPECT MIRACLES.

Financial Assistance for Cancer Patients

Does anybody out there have access to information about grants or medical assistance programs available to families of cancer patients? I have recently been diagnosed with a recurrence of Stage IV Melanoma for which I may have to travel for treatments. I would appreciate any information anyone can offer.