Amazing Grace and Amazing People in My Life

I know I have said this before, but one of the biggest blessings I have received in my life is being surrounded by so many good people during the past 5 months.  A friend told me a few months ago she always hoped she could be at her own funeral so she can hear how much she really was loved -- I don't have to hope for that -- I have been blessed to see all of the good and wonderful people in my life right now.  It would take me days to write about all of love and big and little acts of service I have received.  

I do have to share a couple of experiences I've had in the last few weeks.

After being chemo rejected two weeks in a row, I was pretty darn devastated and feeling about as low emotionally as I had been since I February.  This didn't last for long though.  I had so many people let me know they were fasting and praying for me and I can't begin to explain how much this lifted me.  My heavy heart and negative thoughts were pushed aside as I realized how many prayers were being offered in my behalf.  

I had to chance to be a part of two of  fasts with people I love and admire.  Two times that week I had a chance be part of a group fast and kneel down with people I love and hear them pray for me and my Drs. and my kids.  I got to watch my kids follow the example of family and friends and fast for 24 hours for me (which was tough for Cameron who kept saying all afternoon that in 5 more minutes he was going to break his fast and someone managed to make it the whole time.)  

Do you know how humbling and amazing it is to feel the spirit at the end of a fast and be the recipient of the love and prayers and blessings?  

I also received a treasured gift at the end of one of these fasts.  My entire family -- spearheaded by the brains of Mandy and talents of Jacque -- gave me a quilt that they had been working on for months.  (I can't even begin to imagine how much time Jacque spent on this and the thought and creativity that went into the squares.)  After we ended the fast they gave me an incredible quilt that included a square from everyone in my family.  We sat there for probably a half an hour and looked at each square and laughed and cried about the pictures, the thoughts and the stories behind each of the squares.  

It is overwhelming and an amazing blessing to have good, kind, wonderful loving family and friends and neighbors and even acquaintances who are getting me through this through fasting, praying, phone calls, txts, emails, cards, food, service, visits, smiles, taking care of my kids, encouragement and love!

Happy Chemo ... or at least not negative chemo

When I was at chemo and my shots last Monday and Tuesday, I noticed kind of a strange thing.  As depressing and awful as chemo is -- there is something positive about being there and watching people doing their best to overcome an awful thing and seeing people reach out to another person who is probably worse off than they are.

Don't get me wrong, it is not a happy and cheerful place, and it can be rather depressing.  The office I go to is an older office and isn't the most beautifully decorated, comfortable office.  But there is something about watching everyone there.

I've seen people get sick and cry and need oxygen and have Drs. and nurses rush to them, but I've never heard patients whine or complain or be nasty to other people.  As you walk up and down the aisle with your drugs attached to you and you are headed to the bathroom everyone smiles and gives you the "you can do it" look.  In the waiting rooms it is very common to swap cancer and surgery stories, encourage a new person about how losing your hair isn't too bad, and clap and wipe back tears when someone is leaving for the last time and gets to ring the bell.

I think part of it is that you can't feel sorry for yourself at chemo.  There is always someone worse off than you are.  When I go to church or to an event with the kids or to the store, I can look around and wish that I was living a "normal" life right now.  But at chemo I just count my blessings and realize we all have tough things to face. 


I've watched a dad do his chemo with 2 little girls sitting on his lap and read books to him and his wife have to wheel him out in a wheel chair when he was done.  Last week there was a cute girl probably 17 with a mom younger than me.  She had a feeding tube and looked so sick and frail.  One of my chemo breast cancer friends has a husband with Alzheimer's and he doesn't even know her anymore.  She can never be the patient at home like I am because she has to take care of him.  My cute 75 year old Ovarian cancer friend I met last week lives alone -- her kids live out of state -- she was ringing the bell by herself after her last chemo because her brothers wife had died and he was getting ready for the viewing.  I met a sweet family whose mom (probably 55) was starting her first chemo.  The husband, sister and one daughter were all with her.  They wanted to talk about losing hair, finding cute hats and what was in store for them.  The sister was planning to shave her head when her sister lost her hair.  


When I took Kenzi with me to get my shot on Tuesday she was like a star.  My Drs. and nurses and chemo friends I ran into loved seeing her, told her how beautiful she was and were so sweet.

I love seeing the human spirit doing its best to reach out to others and try to stay positive and fight.  I love that everyone there is just cheering on everyone else -- no competitions, no keeping up with the Jones, now comparing one another.  Just positive thoughts and hopes for other people who are in there facing the same "garbage" you are.

I've Come a Long Way Baby... And No More Nurses and Holes!

Chemo Round #4 has not been too bad -- I've been a bit nauseated (but only have had to take pills a couple of times) and had a few days of some pretty intense aching (mostly bum and hips... go figure).  I've also had really stiff and tight muscles, particularly during the night on my thighs -- which is why I am blogging at 4am.

Dave and I were chatting earlier about how even with chemo, I'm so much healthier (on the outside, just  praying the same for the inside) than I was for the first 3 months.  My sister-in-law commented that for February, March and April I just kind of existed.  I didn't realize it at the time, but as I look back at how I felt, what I was able to do and what I even remember she is definitely right.  

*  No more holes!!!  I haven't had a nurse come to our house for 2 weeks now.  I loved the nurses, but it is so great to shower when I want, get up when I want, come and go when I want and not have holes in my stomach!!  (I now have one of the world's ugliest stomachs, but oh well... bikini modeling was in the cards for me anyway.)

*  I can watch movies.  Until about May I felt so icky the thought of concentrating on a movie, on the couch, with the family was too much.  I remember watching a movie with the kids in April and being so miserable just wanting it to be over.  We watched 17 Miracles for FHE tonight and I sat and relaxed and ate popcorn and didn't have to force myself to watch it.

*  I can play games someplace besides my bed.  I love to play games and Cam has been an anxious opponent since my surgery.  He used to bring a game to my bed and I would try to find a position comfortable enough to partially sit up long enough to play with him.  It was really that last thing I wanted to do, but I wanted to be a normal mom and have some interaction with him.  Now we play inside, outside and I'm the one begging him to play with me.

*  Food sounds good, tastes good and I no longer have to drink high calorie ensure to make sure I'm getting enough calories and vitamins.

*  I can sleep on my stomach.  I can kneel down for family prayer.  I can sit at dinner with the family and not have to go lie down after 5 minutes.

*  I can do a sit up and get out of bed without an effort.  Losing my stomach muscles after surgery and having the holes completely wiped out my stomach muscles.  I actually layed flat on the floor tonight and did a few sit ups.  Seriously never thought I'd do stomach things without major effort again.

*  Drive the speed limit, wear a seatbelt and not cringe over every bump.  Again looking back it seems so strange, but it was such an effort to even be a passenger in the car.  Every bump hurt my infection and when I was actually the driver it took so much concentration and effort that I would find myself driving way under the speed limit and being as cautious as a 90 year old grandma!

*  Stand up straight and not hold my rib cage.  I seriously worried I would be a hunched woman forever.  My muscles were tight and it hurt to stand straight.  My Dr. and Dave kept telling me I had to start standing straight and stretching my muscles, but that dang port just wouldn't let me.  I looked at a picture of me the other day and realized how hunched I really was.

* I can make it through the day being up more than down.  I still have to rest and have a nap or two every day, and I definitely do not have the energy or drive to be doing and moving like I once had, but most of my day is not spent in bed.

I am continually amazed at the human body and its ability to heal and fight.   There were so many times I was so frustrated that I have lived the word of wisdom and taken care of my body my whole life, and yet I felt like I was falling apart.  As I look back I can see that even with set backs, slowly but surely my body is regaining its strength and despite the cancer, the chemo, the infections, my body is relatively strong.  Even with low white blood count and lack of sleep for 5 months I've yet to get sick with a cold, flu or fever ... knock on wood.

I can't wait to look back in several more months and be amazed at how much progress I've made again! 

Happy 4th to me and Happy 4th to You!

Thanks to fasting, prayer, expensive shots and lots of positive thoughts I had chemo #4 today.  My numbers were all in good ranges and I'm home and feeling good.

As always, in a strange way it was a nice day.  Terri took me and it was a really slow day at the chemo office.  We sat by the cute Ovarian cancer lady I met last week who was there for her last day, and my friend Linda who is also an ovarian cancer survivor (1 year ago started chemo) brought us lunch and hung out with Terri and me.

Here's to a great 4th chemo to me and a Happy 4th of July to everyone!

Drum roll..... Dave's Summer Project!

Every summer Dave gets a creative bug and does a cool project in the yard.  We've enjoyed the tire swing, fire pit, swing set, hammock area and great landscaping.

This year his creativity sparked the day the great neighbors came and helped us clean up the rest of our tree mess.

In honor and memory of the huge, gorgeous trees we lost in December (sniffle... I still can't stand that they are gone) we have some great new fire pit benches.

He's adding sod behind it and we still need to find some chairs and a table, but here is a look at his new design.

Random Spring & Summer Pictures

Happy Father's Day Breakfast

Dad is a good cook and is crazy!

The Father's Day hammock didn't arrive on time but the kids all picked out a few things that reminded them of dad.  

Poor Zoe.

Zoe is Lolo's soccer partner.  They play soccer every night together.  She is really fast... both of them.

At the end of the school year Cameron started sleeping in his clothes so he didn't have to get dressed in the morning.
Really Cam -- shoes and everything?!?!?

Kenzi and Cameron spend a lot of time together.  When not with Cam or friends Kenzi is up in her room playing the guitar and Ukulele.  She is getting super good!

Cam's note to self -- don't let your sister Lauren use your face as a pallet for white out painting.  It looks funny but oh my goodness as Cam said "it hurts like heck to get if off."

Grandma's Grave

Chemo #4 -- Rejected Again!

I wasn't holding my breath thankfully -- but I got sent away from chemo again today.

Platelets were up a bit, but white blood had dropped and the infection fighting cells within the white blood count specifically had dropped too low.

I am getting shots every day this week to try to boost the white blood count ... and we try again next Monday.

She said the bone marrow just seems to have been very hammered with the chemo.  The IP chemo is less intrusive on bone marrow -- but they would have to wait 1-2 weeks to do the surgery to put it in, 2-3 weeks for it to heal and then just hope I didn't get an infection like before.

Oddly enough I feel good and I think I look healthy too.

Frustrating ... feels like I'm in a no win situation.

I'm sure I'm learning something and I'm sure there is a plan for all of this, but today I don't really have the emotional energy to put it into words.  So... I'll just get the shots, eat healthy all week and see what happens next week.

End of School 2012

Thanks to Dave taking over as mom and getting the kids up and out the door every morning for 4 months (he deserves father of the year award), and great friends who took the kids to and from school every day, somehow the Hess kids all survived the school year and did fabulous. 

Lolo ended up with a 4.0 -- and that was with a super hard Honors Science class that she had a B- in at midterm.  Kenzi had perfect grades and hardly any missing assignments, and Cam did great and aced all of his end of level testing. 

I really am amazed at how all 3 of them just kept on going and did so well in school and everything else they have been doing for the past 5 months!

T

Kaylee & Lauren -- where did the time go?  They were 5 and 9 when Kaylee moved in.

Kaylee Graduation Party

Cute Tess Morley

Cam Birthday Week -- Part 2: Pinewood Derby and Family Fun

Just now downloading the rest of the pictures that made Cam's 8th birthday week so great.  Visit with Uncle Scott complete with a Utah hat, pinewood derby building with dad and race day, and mom's donut cake (not nearly as cool as Becca cakes, but about all I was up to that week.) 

Just

Summer for an 8-year old ... doesn't get any better than this.

Cameron:  "This is the best summer of my life!"  

Apparently he is thoroughly enjoying himself this summer.  I love watching an 8-year old, who loves everything -- and is experiencing a lot of firsts.  Here are a few of the things that is making his summer so great. 

Baseball League Champions -- beat the undefeated Dodgers 2x in the tournament.  

(Although I kind of think the dads were more excited than the kids.  And Lauren was super jealous of the huge trophy.)

Centerville Kids Kamp -- PJ day, rockets, carnival, water day, sports day and more.  

(My girls did this camp and I had forgotten how much they loved it and I love it.)

Scout Camp -- Dinosaurs & Super Heros, Trading Post and Tons of Dirt

(Oh my ... heavens!  I've never seen him so dirty in my life or so excited to talk about the details.  He bought Indiana Jones whips at the trading store, loved every silly skit and just couldn't get enough of the two days.)

Swimming Lessons and Cherry Hill

(Finally has overcome his slight fear of the water and diving board.   Loving every minute of water this year.)

Playing outside until dark w/friends: sandbox, mud, robbers, wars, scooters &  more.

(There are 8 kids from 5 - 10 in the circle, with a few more younger and older, and summer nights in the cul-de-sac or someone's backyard is always entertaining.)

Hooray for me ... and my sisters and nieces and family ... no BRAC gene mutation!

Some good news on the Steph and Wall family cancer front... I got a call from my Dr. office yesterday and I don't have the BRAC gene mutation for hereditary breast and ovarian cancer ... and increased risks for pancreatic and prostate as well.


Due to my "young" age in getting Ovarian cancer and my mom's and brother's cancers, they did some genetic testing for a gene mutation that dramatically increases risks of Ovarian,  Breast, Pancreatic and Prostate cancers.


(Most cancers are "sporadic" which just occur by chance.  There is also "familial" which means there are genetic and environmental risks factors and you see multiple relatives with the cancer -- but no specific link to a gene.  And then there is "hereditary" which is when an altered gene is passed down through the family.  


In my case they were looking for a mutation in BRAC1 or BRAC2.  If I carried it my brothers and sisters and their children would have a 50% chance of carrying it.  (Boys can be the carrier of it too.)  So this was good news for all of us. 


From the genetic testing packet:



"Hereditary Breast and Ovarian Cancer (HBOC) syndrome is an inherited condition that 

causes an increased risk for ovarian, breast, pancreatic and prostate cancer. The vast 

majority of hereditary breast and ovarian cancer is due to an alteration or gene mutation 

in either the BRCA1 or BRCA2 genes. These gene mutations can be inherited from either 

your mother or father.

Normally, the proteins produced by the BRCA1 and BRCA2 genes prevent cells from becoming malignant by aiding in the repair of mutations in other genes through a process known as double-strained DNA repair.  Therefore, an inherited mutation in either of these genes, also known as tumor suppressor genes, greatly increases the probability of malignant transformation and cancer."

Example:  If you have this mutated gene a woman has an 87% chance of getting breast cancer and a 44% chance of Ovarian cancer by the age of 70.  (General population has an 8% chance of getting breast cancer and less than 1% chance of getting Ovarian Cancer.)   And it significantly increases the chance of recurring cancers. 

If you have it they will do increased screening and start at younger ages, have certain medications they would have you take or some people might even get a mastectomy and hysterectomy for prevention. 

I really thought my testing was going to come back positive and when it didn't cried for the 2nd time this week -- this time happy tears.   (And I have to apologize to my mom -- I thought for sure she had passed along this gene to me.)   I realize this doesn't mean that when I beat this thing I won't ever get breast cancer or have an ovarian recurrence... psychologically it just takes some worrying pressure off.

A small part of me was a little ticked -- knowing that not having this gene meant that I had a "less than 1% chance of getting ovarian cancer and yet lucky me got it.

But I won't dwell on that.  I'll dwell on the Yeah for no BRAC gene mutation and hoping that this means my nieces and sisters will not be at so high of risk for the nasty stuff mom and I were "lucky" enough to get.  

Chemo Round 4... Didn't Happen

So I was rejected at chemo yesterday ... no one likes rejection particularly when you have geared yourself up emotionally and physically for something you absolutely hate, but know you must do ... and then it doesn't  happen. 


(I love Roxanne's analogy -- it is like someone who is afraid of heights and water agrees to climb up to the high dive and jump off.  They reluctantly go up each stair, inch their way to the edge and just as they finally have the courage to jump they are told to go back across the board, down the stairs and come back next week to do it.)


My platelets were at 88 -- normal is 140-450.  (Platelets control blood clotting.)  At my mid-chemo nadir appointment 1 1/2 weeks ago they were at 222.  That is supposed to be the lowest point in your blood during the chemo cycle.  But for some reason mine hit almost rock bottom.


Ironically my white blood count was super low at the last appointment, but had been climbing back up and was within levels that they would have done chemo based on white blood.


Good thing I'm not a swearer or you would have heard a few bad words -- unfortunately I'm a cryer so the Dr. and nurses and everyone at the office had to watch me be mad and disappointed through tears.  They are all so sweet but what do you say to a teary woman who just got rejected from chemo?!


I JUST WANT TO GET THIS WHOLE THING OVER WITH.  I JUST WANT TO GET ALL OF THESE HORRIBLE POISONOUS CHEMICALS IN MY BODY TO KILL THE CANCER SO I AM DONE.   Is that too much to ask?


The frustrating part is that because of the IP infection I can no longer have the really strong chemo in my abdomen.  And now because of low platelets when they start again (hopefully on Monday) they will have to reduce the strength of the chemo. 


As my friend reminded me my body has always been super sensitive to medication -- so maybe it doesn't need as strong of chemo as they had started with.  Maybe the cancer cells are just fine being killed off with lower doses that are spread apart a little more.  Maybe with this I won't have some of the long term side affects that chemo often leaves.


I have 100% faith that Heavenly Father is control of all of this and that I need to trust Him.  Again (and again and again and again) I repeat this scripture in my head -- for all flesh is in mine ^ahands; be still and ^bknow that I am God.


So along with having trust I'm going to look at some positives:


1.  My cute niece Katie had agreed to set up an online dating profile to keep me entertained at chemo.  (She said she couldn't shave her head for me but the least she could do would be do entertain me for a day.)  Even though I didn't get the chemo we came home and set up her profile and laughed and had a great time going through the website.  


2.  The kids and Katie and I got to spend a few hours at the park having lunch and relaxing yesterday rather than me laying at chemo all day. 


3.  I am learning patience.


4.  I am learning to let go of the need for control and put things in Heavenly Father's hands.  I'm a bit of a control freak so this is a hard one for me. 


5. I am learning to just appreciate what is happening each day and not looking too far into the future worrying about what comes next.


6.  I am coming to appreciate the amazing human body and how lucky I have been to this point in my life to be so healthy.  


7.  The girls are going to Youth Conference this week and I had just planned that I would be sick with Cam for a few days.  Now he and I can go do a few fun things together. 


8.  I am learning to eat healthier food.  I'm really trying to eat lots of fruits and veggies and drink tons of water.  I'm finding that a bowl full of veggies as a snack is something I look forward to.  (I so hope this is one I can keep up after chemo, but realistically this will be one I'm sure I'll have some struggles keeping up on.)


9.  I feel good enough to make a yummy dessert for my fabulous dad who turns 85 today!!!

I Can Ride a Bike!

No this isn't a guest post from Livi -- who recently has mastered the "no training wheels" on the bike.  It is me, proudly announcing that I rode a bike today.

For my great grandchildren who read this 40 years from now ... (or at least I hope you are reading this since that is one of the primary reasons I do this blog -- someday when they are asked to share a story in YW about an ancestor who inspired them they can talk about "Grandma Hess and how tough she was when she had cancer")... it isn't that I just learned to ride a bike.

Two months ago -- and even two weeks ago -- the thoughts of sitting on a bike, being able to bend over without cringing and having enough stomach muscles to hold myself on the bike, would have been laughable.

But today when the kids decided to ride their bikes down to Cottles for Sunday dinner, I decided to join them. I thought they'd be so proud of me ... Lauren was actually more proud of me for finding a place to hold my cell phone when I didn't have pockets.

Before I make myself look too good I will admit we only rode one way -- 3 + miles all downhill or flat.  I called Grandpa and had him bring the truck because even in good health riding up 5th South or 4th North would have done me in.

But it feels great to be able to do normal things again -- not sure I'll be walking in the morning -- but tonight it feels pretty darn good!

Chemo #3 -- Not too bad. 3 more to go...

Its been almost two weeks since my last chemo, and "knock on wood" so far it has been the least hard on my body.  I had 4 or 5 days of bone pain and arthritis type pain, but nothing as intense as the last round.  I didn't even end up having to take any of my prescription pain medication.   I've been super tired and fatigued, but no nausea -- yeah!

I went to my nadir appointment (point in the chemo cycle when my white and red and platelet counts are the lowest) on Friday and yes I am definitely at a low.  My platelet and red are within chemo low, but my white is shot.  I think it was at 1.1 -- the lowest it has been before is 3.2.  But my CA 125 is still down (12 this time) and so it appears my body continues to respond to the chemo.

I was trying to narrow down with the Dr. what might be different this time than last time to make it a little better on my body.  Other than I have been trying to exercise more and drink tons of water there isn't anything different I've done.  I've found that on the nights my legs are really achy I feel better if I go for a walk, even a 5 minute walk.

I'm holding my breath now because this is supposed to be my good week.  The week my body starts to rebuild the blood and I get back to more normal levels before my next chemo.  Both of my last "good weeks" were the weeks I ended up with infections, open wounds and hospital stays.  Keep your fingers crossed and say a few extra prayers that I can finally have an uneventful down week!

Stay Strong!

At 6th grade graduation last week Kenzi's teacher told me to make sure we went out and saw the playground.  On Thursday at the end of field day Kenzi and her friends decorated the basketball courts in my honor.  


Here is just one of the messages!


This rotten cancer has had some sweet side effects -- I'm amazed at how many of my kids friends have given them so much love and encouragements and notes and prayers. 

I know there are also a lot of prayers from children of my friends that don't even know me.  I have definitely felt strength and hope and encouragement from so many!