How Are You?

I get asked that question a lot. And I know that those asking are sincere. They really do want to know how I'm doing and are hoping that the answer will be positive! I, however, am not always completely honest in my answer. Physically I am doing amazingly well. Minor headaches, nausea, bone aches, fatigue - nothing that isn't manageable. Emotionally, however, I'm having a harder time -- not ALL of the time -- but sometimes. I wonder if this will be my life for the rest of it - however long that is. I wonder if I am being so blessed now because something much worse is coming. I wonder if I'm strong enough to stay busy, motivated, and optimistic, in spite of the fatigue and the fear.

This latest down swing was brought on the loss of my hair. After we finished shaving my head and I saw myself without hair, it didn't bother me as much as I had anticipated. However, going to church the next day was very difficult. I have some lovely scarves, thank you Jenni for your donation, and I have cute hats. But, cute or not - I'm bald because I have cancer. Nothing changes that and there is no hiding it.

I'm not even sure what to say beyond this - thanks for listening?

Despite my uncertainty of going to church - I did put on a scarf and away I went. Here is my first attempt at scarf-wearing.

2 down - 6 to go!

Thursday was my second round of chemo. Nothing really different than before, except that that morning my hair started falling out. My daughter, Ashley, came and visited with me while I was there - that was fun!

When I got home my friend Yvonne came over and visited until I crashed - she also left some more of her yummy lemon chicken lasagna, which we had for dinner!

In the afternoon, I got one of my really bad headaches. I had talked with Dr. Rich about my headaches at chemo and he wasn't real keen on me taking too many Excedrin, because of the aspirin in it. So, I tried all kinds of tricks to get rid of it - heating pad, walks, tea, nothing worked. So, I compromised - when I went to bed I took 1 Excedrin instead of 2 and used the heating pad on my neck. It worked!!

Friday I got my rosy cheeks from the steroids, lost more hair, and still had a bit of a headache, but not too bad. I went and got my Nulasta shot and came home and took a nap. I got up just in time for Nancy Alder's arrival. She brought me lunch and we had a nice long visit. When I had to take a nap, she insisted on staying, so she just sat a read a book until Kent got home.

Still had a headache when I went to bed - I think it was because I was kind of freaking out about shaving my head. But, I used the heating pad and was able to sleep pretty well.

This morning I was losing even more hair. I was still freaking out about losing my hair. Everyone came over and helped shave my head. Once we began I quit freaking out. All of the Grandkids took a turn shaving - we don't have pictures of all of them - I'm sure someone in the fam - does but here are a few from our camera:

This is Jackson shaving, with Aspen observing in the background.


Now, Haley is taking a turn.

They all did a really good job - I was surprised at how gentle they were and how well they shaved it off.



Daughter Becky, finished it off. And here I am, bald:

When I start figuring out how to look good in a scarf etc. I'll post more pics.
All in all - I am very grateful for the continued blessing of not suffering really bad side affects! And for all of the continued love and support from all of you! Your prayers are working!!!!

Glad Game, continued

Here are some more things that I am glad for:
I am glad for whomever invented these marvelous creations. They will cure ANYTHING that ails you! I was introduced to them while living in Jerusalem. I believe Penny Bird met them in London. They have now made their way to Utah County! They come in a variety of delicious flavors. Walmart and Macey's people, Walmart and Macey's!



I am SO glad that I live where I do. You know how warm and beautiful it was on Saturday? Well, my neighbors spent part of it working in OUR yard. Thank you to Bishop Caldwell and his son, Ben, for edging our lawn - this has actually been done over a couple of Saturdays, because they did every edge in the front yard! Just because they can.



Penny and her Dad planted flowers in our garden by the drive way. Rebecca and David Cameau donated the rocks for the edging, and Katherine Cornwall and Penny Bird laid the rock edging. Just because they can. I couldn't even talk to them about it without crying! Thank you, thank you, thank you to my wonderful friends and neighbors - you are the best.


I am glad for my Jackson sisters. They drove down to Orem today and we all went to lunch together. They are, everyone of them, amazing women and the best part is that we all enjoy being together! Love you all!!! {And we missed you, Vicki}

I am glad for events like weddings, that give us a chance to see friends we never see otherwise! Thank you to the Galbraiths for hosting a lovely reception and providing us with an "excuse" to catch up with old friends!

If anyone would like to add their own list of "glads" - feel free!!

sorry

Hind sight is a wonderful thing, isn't it? After thinking on my "pity" blog I feel I may have injured people I care about. I realize that many of you have suffered or perhaps ARE suffering far worse than anything I whined about yesterday. Maybe your suffering is watching the suffering of another, that you can do nothing about. If my blog in anyway made you feel that I was making light of true suffering - I am profoundly sorry!!

My true intent is to share MY personal journey through cancer - good and bad. What that really means is seeing ME, the person on the journey, good and bad.

Ok, so yesterday was a "poor me" kind of day. Having cancer stinks!

1. My life is totally not my own. Everything is worked around and between doctor's appointments, treatments, blood tests, and did I mention doctor's appointments?
2. I feel like a prisoner - I probably won't even be able to go to my grandson's baptism because I'll be in my "low" days!
3. When I went to one of my many appointments - at the hospital - I thought to myself, "Self, do you realize how familiar this place is going to become to you and how well you are going to get to know the nurses here? Oh, goodie."
4. Remember the drain I had removed? Well, I now have a little pouch of fluid under my arm because the drain isn't there to let it out.
5. I have a headache most of the time and the only thing that helps is Excedrin, which I can't take too much of right now, because it contains aspirin, which thins my already thin blood.
6. I can walk, maybe a mile, and it takes me 30+ minutes and I'm breathing hard!
7. Rain, rain go away - I need sunshine in my day!
   

Jeesh - call a waaaaambulance!!!!!

Ok, I've pitied myself well and smacked myself around. Now I shall try to play the "Glad game". For those of you too young to know about Polyanna - sorry. So I'll revise the list, shall I?

1. My life isn't my own, but I'm glad this part isn't forever and I certainly can't complain about side affects up to this point. My bathroom has NOT become my new best friend. On a more serious note - this is what my Heavenly Father is asking of me right now. I keep thinking of the hymn "I'll Go Where You Want Me to Go". Huh - I don't sound too willing to "go" do I?
2. I may not be able to go to Ethan's baptism - but I'm glad I have Ethan! And I have Zoe, Jackson, Crash, Lexi, Aspen, Haley, Max, and Skyler! I am such a lucky grandma!
3. Even though I do have to go to the hospital a lot and going there isn't particularly fun--I'm glad it is a cheerful room with a beautiful view of Timp and lots of sunshine. And look at all the new friends I'm going to have that I wouldn't otherwise, including the sweet nurses!
4. The pouch under my arm isn't getting bigger, red or warm - so I'm glad it isn't getting worse, I'm not in danger, so knock it off!
5. I'm glad I can at least take the Excedrin some of the time!
6. I'm glad I CAN walk - and the air smells so good and fresh and it does me a lot of good mentally if nothing else.
7. Well, I still want the sunshine! :)
   

Here are some more things that I am glad for: I just remembered that I never showed you some of the cards that my primary kids in Jerusalem sent me. This first one I liked because she made it open so cleverly:

Then this is what was on the inside:

This one was made by a special friend of mine. Not only does she want me to feel better, but she shows me sick in bed - with her visiting me - and then me better! I love it!!

I'm glad for all of you, your prayers, support, love, concern. I have the best friends, family, and neighbors in the world!

One last thing - I've decided to help those of you who could come to visit, to know when my low days are. During those days, I will hang this sign on my front door. [Kent added the biohazard signs!] :)



I feel much better now that I whined and I am SO grateful for the blessings I have received so far in this adventure - many of them through you and your prayers and help!

What now?

Well, I set an alarm this morning and made myself get up. I started learning Zumba steps today. I didn't even get through all of them before I had to stop. It is pretty pathetic - and funny so nobody can come and watch! :)

Dr. Rich took some more blood today to see how my immune system is doing. It is doing poorly - I am very low and will be until probably Monday or Tuesday of next week. What does that mean? Well, according to Nancy, the P.A., I CANNOT GET SICK!!!! Specifically, that means:

• Memorize the handouts on "infection" - symptoms, prevention, and management
• Don't go out to eat
• Don't eat raw fruits or vegetables unless I can peel them or wash them really, really well
• Don't go to church on Sunday
• Don't be around sick people or crowded places
• Wash my hands a lot and use hand sanitizer
• Drink LOTS of water and go to the bathroom every 2 hours
• Check my mouth for sores
  

If I get sick:

• Take my temperature. If it is 100.4 degrees, call Dr. Rich and then go to the lab or the ER, depending on the day of the week and the time of day
• Give the medical people the list of tests I need done [filled out and given to me by Nancy]. I keep this list with my antibiotics.

The tests include blood work through my port AND my arm, a urine sample, and if I can't breathe well, a chest x-ray.

• After I have had all the tests done then I begin taking the antibiotics and treating symptoms.
  

Did you know, by the way, that studies are showing that it is better to let a fever run its course in little kids? Unless it is off-the-chart high and the child is screaming in misery - don't give them Tylenol etc. Because we have used such meds so freely, our antibiotics are not very effective anymore.

Sorry for the little side-tracking! Anyway, the long and short of it is - DON'T GET SICK!! Interestingly enough, Dr. Rich is much more laid back about all of this. He sees nothing wrong with going to church etc. if I feel like it. He said to stay away from salad bars but not restaurants. Hmmm. You know I'm going to go with the hyper stay-away-from-germs mode! So - phone calls welcome. :)

No, I haven't succummbed to chemo

Saturday, May 14 was a "cotton-headed" "needed-steering-help on a walk" kind of day. It was a beautiful day, though. I did a little yard work; sat outside and enjoyed the air; went for walks with Kent [see the steering comment]; took a nap; and tried to carry on intelligent conversations [see the cotton comment]. Kent asked if I wanted to go to dinner that evening. The only thing that sounded good was soup and corn bread from Mimi's. So, that's where we went. Hah! When I got there and started looking over the menu, LOTS of things sounded good - thankfully. It was nice to feel fairly normal.
I can't say that I feel 100% - sometimes my head aches and I feel nauseous - I take a pill and usually feel better. I get tired easily but on the whole I cannot complain!

Sunday I was steadier on my feet and clearer in my mind but extremely sleepy. I had an absolutely delightful morning, sitting on the back porch and feeling the wind blow. It made me want to take a trip somewhere! However, I slept through most of Sacrament meeting [no reflection on the speakers - whomever you were], helped teach our Sunday School class, which I really enjoyed, and then I went home and slept for another hour or so. Sweet Jenny & Dwight brought dinner today, so while I was waiting for them to come I went and layed in our hammock and enjoyed some more awesome weather!

Before they all went home we took a walk up to the Hassinger's - who have partially taken over the Grandparent role with the Robins kids! Thank you Pam & Floyd!!

Yesterday evening Rebecca Grass brought her mother over to visit. Her mother was diagnosed with breast cancer a little over a year ago. It was very sweet of them to take the time to share their thoughts and feelings with me and express their love and support for me!

How am I feeling about all of this? There are moments when I will be doing something extremely ordinary and it will suddenly hit me, "I have cancer and for the foreseeable future, my life will be anything but ordinary." That sucks!! And despite my optimistic outlook I also realize that as the chemo accumulates over the next few weeks my symptoms will most likely become worse. Does expressing that fear bring it to fruition? Should I be worried that I have been so incredibly blessed thus far? Should I feel, instead, some sort of foreboding?? I certainly don't want to go down that path - and most of the time I do not/will not. Thinking on your faith and prayers and focusing on my blessings helps me continue with a smile. Thank you for being part of that smile!

First chemo - 1 down 7 to go :)

Thursday, May 12Th - D [or I guess C]-day. We arrived at the hospital at 8:30. The MA weighed me and took my blood pressure - fat and low, respectively. :) Then the nurse took me to "my" chair - right across from the nurses window since I'm a first-timer.
Kelly, that was her name, accessed my port, took come blood and then inserted the IV in preparation for the chemo.
Next, we went and sat in an office and waited until about 9:20 for the doctor to finish his hospital rounds. We chatted with him for awhile - my blood tests and echocardiogram both looked good - so [Doctor -"any questions?"], [me -"no"], [Doctor -"Ok, let's go."]
I went back to my chair and they began with a saline solution, that dripped for the entire treatment. The first bag of meds was an anti-nausea medicine called Edmen. She showed me the bag - and that it had my name on it, before she hooked it up.
Second bag was also an anti-nausea med called Aloxi
Third bag was Dexamethasone which helps the first two work better - it is a steroid. Each new bag was shown to me with my name on it, as well as the name of the drug.
Here is what my port looks like when it is hooked up:



While those 3 bags are emptying, it is time to sit and wait. So I did crossword puzzles:


Here's one that shows the lovely view behind me - snowy Mt. Timp!

I also ate lunch and drank some juice somewhere along the way. I began a book, but kept falling asleep, so gave that up.
After the 3 bags were done then serious meds came. First, the nurse got me a class of ice chips and a spoon and told me to start eating it. The cold in my mouth helps prevent mouth sores, which is a common side-affect of the chemo drugs. Because the chemo is so toxic, the nurse sits and pushes it in a little at a time - making sure it isn't leaking out anywhere - it burns away surrounding tissue! Pushing is good!!! There were 2 vials of this red medicine that she had to push in - it took, probably 10 minutes or so. I munched on my chips and chatted with the nurse. I did get cold so I bundled up in my lovely "chemo" blanket. This was made and donated to me from the Sister Survivors support group that I joined. Isn't beautiful - and so comforting! Thank you ladies!!!


I finished my ice chips. But, the saline solution was still dripping in I got tired so:

That was it. I made appointments for the next chemo etc. and we went home. I took a nap. I felt fine, really, when I woke up, but Kent was nervous about leaving me alone, so when he went to work my sweet friend Yvonne came over until she had to go to work. We had such a fun time chatting, catching up on all that we had missed on our walks together. She brought me another library book to read. It was nice - thanks Yvonne!
After she left I took a chair out front and just enjoyed smelling my apple blossoms and soaking up the sun. I also got a package in the mail - letters and cards from my Primary kids in Jerusalem. What fun that was!! I'll take a picture of a few and post them tomorrow. I also had a nice visit with my next-door neighbor Gisella.

After dinner, I went to my first support group meeting. They meet in one of the offices in James Town on University Avenue in Provo.

It was their 1-year birthday from when they were organized. They went over what they had done in the past year and how they got started in the first place. Then one of the survivors and her friend helped us sing the song "I Will Survive" - with different words. The friend had written the new, more appropriate words - she was good and it was a lot of fun.

We also made our own facial scrub and tried it out. It felt great!!! We mixed 1/2 c. brown sugar with 1/2 c. white sugar, then added 1/4 c. olive oil until it was like wet sand. Then we stirred in 1 tsp. of vanilla. We all tried on our hands - putting it on the face may cause some of it to get eaten!!! I thought smelled like chocolate chip cookies.

We had birthday cake and I had a chance to talk to a couple of people about their own experiences. Most of the said that their first day of chemo was fine, too, it would the next couple that would be bad. In fact as we were walking out to our cars - 2 of them said "We'll be thinking about you tomorrow." Kind of ominous.

Friday, May 13th - THE DAY AFTER!!! I slept great. I did have to set an alarm to wake myself up and go to the bathroom. I am supposed to go every 2 hours and then once during the night and then as soon as I wake up in the morning.
Anyway, I got up, showered, had a small breakfast and Kent and I went for a short walk. It is so beautiful out! We ran into some good friends, who gently scolded me for having not blogged with yesterday's chemo. I'M ON IT!

Daughter Sarah and her cute twins, Lexi & Crash came to keep me company until school. They, lucky them, got to take me to get my Nulasta shot at the hospital. The shot itself - tiny prick, nothing else - but a 40 minute wait time for my support group.
We stopped at Kneaders and got take out lunch which the twins ate on the way to school. They dropped me off at home and I finished mine here.

Daughter Jenny came over for the afternoon. Just after she got here, our friend Sahar Qumsiyeh, from Bethlehem, dropped by. Kent came home from work and visited with her. It was so good to see her and get caught up on what is going on in Bethlehem and Jerusalem. She is an amazing woman. Palestinian, who got a scholarship to BYU that she didn't want to use, but felt prompted to do so. She joined the church while there, got her PHd in Ankara, Turkey and then returned to Palestine.
She speaks fluent English an Arabic, she intelligent and good and kind. She is the only member of the church in her family and her mother continues to criticize her for that choice. Yet, Sahar remains faithful - she is our RS President and has a positive attitude about her tough life in the West Bank. As you can tell, we think the world of her.

After she left, Jenny, Kent, and I went for a short walk and then watched "Salt" on the TV and then Jenny went home and we went to "Zupas" for dinner. All that has sounded good to me today is soup. That's what I had for lunch and dinner.

Now, here I am finishing up my blog for today.
Symptom-wise I feel, tired, a little head achy, my face and neck are red and warm, [that is from the steroids and is supposed to go away after I finish taking them]. Occasionally I feel nauseous and take a pill and feel better. I can't walk t0o far without holding onto someone - I feel dizzy and I feel "fuddle-brained" but, so far, according to those around me, I AM STILL coherent! So, that's good!!

Thank you for the prayers and faith that are helping me deal with chemo. I anticipate that things will get tougher as time goes on - and I hope I can continue to find strength and peace of mind through your strength!

Catching up

I just realized how long it has been since I last blogged - sorry. First of all, let me show you what I am looking at out my window as I blog:
I went outside to get a closer picture - wish you could hear the hum of the bees and smell the sweetness of the blossoms!

Where to begin - last Friday, May 6, was an unforgettable day for me. President Packer and Elder Holland came down to BYU to speak to the Religion faculty and their spouses. We assumed that there was a reason/agenda behind the visit. However, Elder Holland spoke first, and he assured uas that they had come just to say "hello" and "we love you." As a wonderful addition, President Packer left an apostolic blessing on the faculty and through them, their families! As President Packer said himself, "this is no small thing!"

Now, let me give you a little background to help explain what happened after the meeting. Elder Holland is the apostle who works directly with the Jerusalem Center. He and Kent have corresponded now and then over the years in this regard.

Shortly, AFTER Kent and I returned home in April, Elder Holland was in Jerusalem and spoke to the students at a special Saturday fireside. He, of course, learned that Kent and I had had to cut short our service there because of my cancer. Anyway, back to Friday:

We all stood as President Packer and Elder Holland filed out of the room. As Elder Holland passed us, he took me by the arm and said "Are you doing ok?" I assured him that I was. Then he said, "Look me in the eye, and tell me that you are doing ok."

AAAH - I still can't believe that he remembered, and that he would take a minute to say something to me - just plain old me. I'll never forget it!

Ok, now on top of that I had a wonderful Mother's Day with my sweet family. I even got to talk to Jonny on the phone! I am a lucky woman and very blessed.

This week - I AM FREE, AT LAST!!! I got my second drain out on Tuesday. It is amazing how unencumbered I feel: nothing swinging around while I'm showering, nothing to roll over on when I sleep, nothing to empty, measure or stuff gauze around, no more leaking!! It is awesome.

Last night I went to a "Look good, feel better" class. This red bag is full of make up and lotions donated to the American Cancer Society for cancer patients:

The class was to show us how to use the products and also to demonstrate ways of wearing hats and scarves when we lose our hair. They also talked a little about wigs. It was a lot of fun and mad e me excited to go shopping! :)

Tomorrow is THE day - my first chemo treatment. I am nervous -- knowing sort of what to expect, but not knowing for certain how I, personally will handle chemo. At least I'm on my way through!

Thank you for the chocolate flowers, pink carnations, cards, phone calls, help with boxes and especially for all the love and encouragement! Everyday is a blessing because of all of you!!!!

not so bad

Well, today I went to my chemo class. I have worried about it because I was certain that it would make me even more nervous and pessimistic about starting chemo. Gratefully, it did just the opposite. I feel much more calm and at peace! 3 of my daughters and Kent also went - they all felt the same way. And it helped me a lot, to have them there.

First, we watched a 30-minute video about chemo. The "talking heads" were actual chemo patients who shared their own fears and uncertainties when they wen through chemo. Then they had a medical person who answered those questions - and then the patients told their own experiences. It was very helpful.

After the video, Dr. Rich's nurse came in and went over what exactly would happen the day I go for chemo:

First I will meet with the doctor, have a blood test to make sure I'm not anemic or in some other way not healthy enough to start chemo.

Then they give me an IV with 2 anti-nausea meds in it and a medication that helps those meds work more efficiently. Then they give me the chemo drugs. The nurse went over each of those and what side affects there could be and what they and I can to do treat those side affects. She answered all my questions as well as those from my daughters, and Kent. It was very, very helpful and HOPEFUL.

Add to that, the beautiful spring day and it was a very nice day!!! :)

Still have my "side" kick and I have a heart!

So, I DIDN'T get my second drain out, yesterday. I did get lots of gauze pads and tape to help deal with the leaking, but I'll have my little companion for at least another week. The surgeon assured me that this is totally normal for some people. Ok, so I'm sort of normal - shocker to all of you, huh!?

The nice part? I feel comfortable, again, going and doing because I'm loaded up with padding. So, llast night, 3 of my 4 wonderful daughters treated me to a girls' night out! We missed you Ashley, wish you didn't have to work nights! Anyway, we went to Zupa's for dinner and then went and saw Water for Elephants. Very nice chick flick. Thank you girls for a wonderful night out!

Today I had my echocardiogram. Guess what - my heart is working!! :) Some of the medicine in the chemo treatment has the remote possibility of damaging my heart. They do the echo to see how well my heart muscles are working now and then, apparently, I will have more echos throughout treatment to keep tabs on it.

For those of you who haven't ever had an echo - it is an ultrasound of your heart.

I don't know what it is like where some of you are, but spring has finally arrived in Utah. It is beautiful outside. I plan to take a short walk here in a few minutes!