Chemo Makes Me Feel Crummy

This is going to be a very short update.

Chemo makes me feel crummy.  The whole day I have felt listless and lethargic.  Food was a problem.  I don't even know what else to say.  Today was not my best day!

Here's to a better tomorrow....still planning to road trip!  I can be lethargic on the couch or in the car, right?  Wish me luck.

I Feel Like Cinderella

I had an amazing 24 hours!!!  I felt normal and it was fabulous!  Then, today, at the stroke of 4:00pm, the magic wore off, the coach turned back into a pumpkin, and we are back to crazy land.
But what a wonderful 24 hours it was!

I got up this morning feeling great.  I got some work done, wrote some letters, got ready for the day.  Then, at 9:45, my dear friend came over, and we went together to do ordinance work at the Boise Temple.  It was so great to be there and to feel so good the whole time.  As we were leaving, we ran into another dear friend, BB, who was just arriving.  It was so nice.

We went to lunch at Subway, and I ate an entire Subway salad and loved it!  Salad is my absolute favorite food, and I haven't eaten a single bite of salad since July...so fun.

Lynette dropped me off at Amity's so she could help me with my homework.  We spent a couple of hours taking two tests, and we got 100% on both.  I couldn't stay in school right now if it weren't for her help.

I started melting at about 3:30pm and was fully melted by 4:00.  Fatigue is a side effect of  the chemotherapy.  I spent the rest of the afternoon fighting the urge to sleep because I didn't want to ruin my chances of a full night's sleep.  Fortunately, two wonderful friends came to visit at 7:30pm and we were able to have a nice visit.  I was certainly less than entertaining, but it was so nice to have them here and to feel their love.  I am blessed with wonderful people in my life.

I am trying with all of my little girl heart to get down to Utah for the weekend.  Everything is set up and ready to roll, but I have just got to feel well enough to make the trip down there.  I will meet up with so much family once I get there that I know I will be in good hands....it's just the travel piece still to gear up for.  Do I hear a three cheers for General Conference this weekend?  Hip Hip Hooray!

Christmas in September!

Because I've felt so awful as of late, I have looked forward to this second chemo as if it were Christmas day.

Amity dropped me off at the hospital at 8:30am for blood draws and then a 9:00am appointment with my medical oncologist.  I felt as crummy as could be.  I was so lethargic, I didn't even want to answer his questions.  Once again, we talked about my calorie intake and the realities of chemotherapy side effects.  He mentioned that I had lost five more pounds since last week...he added some meds and removed others.  It is tricky finding a balance that works.

Once we finished, it was time for the grand event.

I got to choose between sitting in a public area in a recliner or lounging in a private room with a bed. I totally chose the private room with a bed, and it was fabulous.  Melissa was with me the whole time.  I can't imagine doing any of this without her.  As a seasoned medical professional, she speaks and understands the language, knows what to ask, and how to help.  She, alone, may be the reason I was so clearly guided to receive my treatments here in Boise.

I was pumped full of pre-meds through my fancy port, followed by five hours of chemotherapy.
The oncology dietitian came in again to talk to me about how to get more calories.  She does a good job; I always get a good idea or two from her.

Melissa and I visited for about an hour, watched some of Elder Scott's funeral, then I started getting tired, so I thought I should sleep.  I think I fell asleep for at least two hours.  Whatever they put in those pre-meds is powerful stuff!  I slept last time, too.  After being with me all day, Melissa had to leave shortly before the finish.  Jeanette came and picked me up to take me home.

On the way home, I had so much energy, and I felt SO great!  I couldn't believe it.  I had no pain, no nausea, no blechy feeling, no bad--all good!  I even felt like eating!

I knew it could all be gone in an instant, so I just jumped right on the wave and rode it as far as it would go.

I told Jeanette I wanted to go eat angel hair pasta with marinara sauce at Olive Garden.  I think she broke the speed limit driving there knowing how quickly the desire could pass.  We got right in and had the absolute best waitress who was as excited for me as I was for myself.  I told her I couldn't remember the last time I had eaten more than two bites of anything since July; this was truly a big moment. Our order came out quickly, and I dove into that pasta!  It was perfect.  I loved it and ate the whole thing!

A few minutes into the meal, the manager came out and visited with us.  He said the waitress (Susan) had told him my story.  He came out to congratulate me and said that my meal would be covered by the Olive Garden AND that anytime in the future that I wanted to come back and eat that same dish, it would be comp'd each time.  Woo-Hoo!  Super good customer service for sure!

After the best meal of my life, I still felt great, so I wanted to go for a walk at the Boise Greenbelt.  It was perfect weather--beautiful fall trees and water, and I had plenty of stamina to do the walk. Yesterday, I did a Sunday walk with my sister's family around Settler's Park and had to sit down every 100 feet because I was so weak.  Not today!

After the Greenbelt, I came home, got my shot, took my evening meds, and then went to an FHE pool party at a friend's house in Kuna.  I still felt great and very normal.

I have no idea what tomorrow will bring, but I can't waste any of today thinking about tomorrow because

Today was awesome!

My private room

End of Elder Scott's funeral

Not a great photo, in fact Melissa looks annoyed, but it was the only one I could sneak of her while we were in the room.  And she was not annoyed.  She's my secret weapon.

Olive Garden angel hair pasta with marinara

Loving the pasta

Done! 

My favorite house along the Greenbelt.  I call this house Candy Land

FHE pool party with dear friends

We were neighbors in Meridian who used to share a back fence until we both moved

I Made It To Church

Oh, I have just felt so crummy for the past few days.

I always look forward to church on Sunday.  I have especially looked forward to this Sunday.  My nieces had their Primary program at 9am, my ward's program at 11am, and then teaching my sweet class after sacrament meeting.  After such a lethargic weekend, I knew all of that would be a tall order.

After a really rough morning, I knew I wasn't going to make it to my nieces' program.  By 10:00, I felt so sick--it was time to call a substitute for Primary.  Thank heavens for a wonderful friend who jumped right in and lifted my burden.  I managed to make it to my own ward's Primary program.  I just couldn't bear to miss it.  Of course, it was perfect in every way.  I bolted for the exit the minute it ended because I felt so sick, and I remained sick for the rest of the day.  Ugh.

I have been so humbled and so touched by those who have fasted in my behalf today.  I have my second chemotherapy tomorrow morning, and I can use all the added strength, power, and comfort your fasting and prayers give me.  I thank you, and your children, from the bottom of my grateful heart.  Thank you.

I know He lives
I will follow faithfully
My heart I give to Him
I know that my Savior loves me.

Figuring Out New Normal

Lately, I am trying to figure out my new normal.  I'm starting to think that if I'm waiting to feel good to really get things done, I may never get anything done.  It seems as if, for now, feeling good may be defined better as "feeling less bad". This whole thing is still so new to me.  I've always been quite healthy.  I'm not a person who has ever lived in chronic pain.  
I'm gaining a great appreciation for people who live their day-to-day life feeling sick all the time.  I don't know how they do it with a positive attitude, a skip in their step, and a smile on their face.  I am trying so hard but I do not think I am doing a very good job.  How do I smile through every bite of food that looks, smells, and tastes disgusting?  I feel awful most of the time and my face and body language show it.  I want to be a good little sick person.  It is hard for me.  
Below are two messages that spoke to me in the General Women's Session of conference.  I want to be more like the little pioneer girl in the picture and I hope I won't give up trying. 

“Don’t give up. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead—a lot of it. You keep your chin up. It will be all right in the end. Trust God and believe in good things to come.”
Jeffrey Holland October, 1999

From Vomit to the Village

Food troubles again.

I started the day with a protein drink, medications and my shot and then went for my little morning walk around the block.  Five minutes later, I threw up everything and never got a handle on the calories the rest of the day. I think I got down maybe 400 - 500 calories today. I really tried but throwing up the first meal of the day made me feel a  little gun shy later on.

My parents are still here and we ended the day at The Village at Meridian watching the outdoor water show.  It was fabulous to be outside enjoying the comfortable fall air--what a beautiful time of year!

One Hat, Two Hat; Red Hat, Blue Hat

Today was my first day as Baldy.  It didn't bother me at all.  I would even forget about it until someone would come over and make a comment that I would remember,  "Oh yeah, I'm bald!"
I FaceTimed with my sister's family in California tonight.  Upon seeing my bald head on the screen, one of the children said, "I can't look!" and turned away.  One said, "Put that hat back on right now!"  And the 4 year-old said, "You look like Ronald!"  (He is my brother-in-law who is battling Leukemia.)  Another 4 year-old niece who saw me today said, "Michelle, you look different with no hair."

Today, I received a handful of hats in the mail from family and friends.  Here is a sampling:

I don't really know how I will cover the baldness in public but I'm sure we will figure something out.


My parents are here to visit me until Friday.  They are great!
It's funny to see how hard they try to get me to eat.
I told them I just eat little bits of lots of things in the attempt to get in the calories.
The whole experience is both amusing and exhausting.  I'm so glad they are trying.

Behind The Scenes

Hiking at Hole-in-the-rock in Phoenix

My plan this fall semester was to finish my Masters of School Counseling.  It will be my second Masters behind the one I got in 2000.  In order to complete the degree, I am required to do an internship in a public school.  My friend, Jeanette, who works in the Boise School District, helped me to find the perfect internship in her school district.  Even though I own a home in the Boise area, I didn't want to move there because I have fabulous long-term renters in my home and I was only planning to be back in the Boise area for six months.  Jeanette offered her home to me as a place to live during my internship.  My plan was to start at Shadow Hills Elementary on 24 August.  As it turned out, I received my diagnosis that week and the internship has been put on hold.

As a result, I am still in the Boise area (Meridian to be exact) and I am still living in Jeanette's home indefinitely.  I wish I could adequately express how much she does to help me and how many sacrifices she makes in my behalf.

She helps me get up, gives me my Lovenox shot in my belly, makes sure I have eaten an adequate breakfast, and goes on a walk around the neighborhood with me each morning all before she leaves for her full-time teaching job at RiverGlen Jr. High.  She leaves her house clean and comfortable for me every day and does almost all of the household chores by herself.  She recently purchased a fancy new mattress for me to see if it would help me sleep better.  She will make or buy any food, smoothie, meal, grocery item if she thinks I may eat it.  She fills my water bottle with ice every few hours just because she notices that it isn't cold anymore.  She goes on walks with me and tries to plan fieldtrips to keep me moving and get me out of the house.

I also appreciate that she takes time to hang out with her friends and family to make sure she isn't constantly playing care-taker to her sick friend.

My family is so appreciative of the beautiful, peaceful home I am living in and the multitude of daily kindnesses Jeanette shows to me.  She is a tremendous blessing to me and to my family.

Thank you so much, Jeanette.

Hair Today Gone Tomorrow

We thought of ending here

Except for up close it didn't look as cool

Kind of Phantom of the Opera-ish

More Phantom

FaceTimed my sister in California

And there you go!  Baldy Du Bois

I'm Trying To Do My Best In My Heart

I'm pretty weary tonight and don't feel good.  Cancer feels yucky. 

This video warmed my heart today.  I hope you enjoy it. 

Counting Calories

What a difference I feel on days when I get on top of my calories!  Because I have no appetite, it is so easy to get behind on my calorie intake.  Once that happens, I feel very weak and sick to my stomach,  and then I become kind of irrational about all food.  I become convinced there is absolutely nothing I could possibly eat.  Playing catch-up at this point is depressing, and things just spiral downward from there.

I had quite a meltdown on Saturday night--depressed, crying, crying, depressed.  I just felt sick of being sick and wondering when I would ever not feel sick again.  I was way behind on the calories and had been for a few days.

Saturday night, I received some much needed help and that help flowed over into today.

I got on top of the calories early on this morning and was able to stay on top of them all day.  What a difference it made in how I felt and felt about the world!  I know this is not unusual.  Food and sleep are fundamental for all of us to feel at our peak.  I've really got to work hard this week to stick to the basics--managing the conditions so that I can get the best sleep possible, and stay on top of my calorie intake so that I can have the energy to keep fighting.

I sported my new, fancy hairdo at church today.  Everyone was so nice.  It was a good trial run for next week's bald debut.

Thank you for another avalanche of light and love this past week! There are no words to express my gratitude.  This journey is so hard for me.  I wish I were cooler, stronger, and more independent right now but I am not.  Your prayers and support are so important to me.

When I walked into church today, a little boy ran up to me and said, "Sister Du Bois, I am praying for you."  Then his little brother said, "I am praying for you, too."  It melted my heart.  Thank you so much

Hair We Go!

I started this Saturday morning with a fancy new haircut.  It was definitely time.

Then the chopping began.  I was so impressed with Wendy's work given that the hair is falling out as she is cutting it.  She found many bald spots along the way which made it even more complicated.

first cut

finding bald spots in the back

bald spots on the top

almost done

Done!

I'd love to say that what you see is reality and, at the time it was; however, half the day later, much more has fallen out and it looks even more sparse.  

I'm hoping to get a few days out of it before shave day.  Thanks, Wendy, for a tough job!

Preparation + Prayers

Imagine my delight when, after falling asleep at 10:30pm, the next time I woke up at all was when I looked at my phone and saw this beautiful number!  I hurriedly snapped a photo of the screen to share with each of you.  YIPPEE!!!!  I felt gratitude from the top of my head to the bottom of my toes for a restful, pain-free, uninterrupted night's sleep.  Thank you for your prayers.

Of course, I know I am not the only person you pray for; however, I do know so many of you, individually and in families, pray for the sick and afflicted.  I know that each of those prayers are answered according to the Lord's will and timing.  I am grateful that, last night at least, it was both His will and His timing that I finally get some pain-free sleep.  It was awesome.

Today was great.  I had a productive visit with the doctor and also got some good medical advice from my physical therapist.  I still need to eat more and push myself more with exercise.

My hair is falling out in clumps by the handfuls; there are piles of my hair everywhere.  Tomorrow, I am getting a very short haircut in hopes that we can put off the shave for another few days.  I'm not gonna lie--I am not looking forward to it, but it is definitely time.  You can be sure I will post photos and maybe even a little video tomorrow.  On the bright side, my eyelashes don't seem to be falling out yet.  I hear that some people lose their eyelashes and others don't.  I would love to keep them :)

Off to bed.  Let's all sleep peacefully tonight!

Tonight, I Will Be Prepared

My perfect pain plan devised yesterday was not prepared for the 3am back pain side show.

At 3am, I was suddenly awakened by a back pain to rival any abdominal pain experienced thus far and it was not even thinking of backing off.  This shouldn't have been catastrophic except for the fact that my supplemental pain killer was in the kitchen and I could. not. move.  I had the primary pain killer ready for 6am but that was not a 3am option.

The friend I live with was sleeping soundly on the other side of the house and wouldn't be getting up until 6.  I knew I could call her on the phone from my room but I just couldn't bear to make her pay for my lack of preparation so I just laid there in the midst of this debilitating pain until 6am when she woke up.  Getting out of bed was a disaster again; however, tonight I will be prepared!  I am looking forward to giving a report tomorrow that includes a wail-free morning.  Do I hear an Amen?!

Besides being worn out early on due to the 3am wake up call, it was a really great day with bounteous blessings in the way of selfless, inspired, tireless, generous service rendered by dear and wonderful friends.  I am so very, very blessed.

Tonight, I will be prepared!

Started with a wail but everything else was great!

I realized that I've never shared the horrific experience it is to get up in the morning.
It really is an awful thing to see and most of all, to hear.

I know this information may not interest everyone.  I also know that my morning struggle is not the case with everyone with this group of diseases.  I share it because I am an inherently curious person who loves details and this is a detail I would want to know about any friend of mine.

I have to sleep flat on my back so as to not aggravate the triplets.  When it comes time to get up in the morning, the shift from flat back to sitting up straight is the most excruciating pain I have ever felt in my life.  So painful, that I wail the whole time I am struggling to sit up.  It seems as if all of the disease-ridden organs and triplets are trying to find their new comfort spot where they will settle in for the rest of the day.  Once I am standing, all is well and there is very little to no pain the rest of the day.  That pain medication is very powerful.

Tomorrow, I am going to try and take the pain medication 45 minutes before trying to sit up.  I'd like to see if we can cut out the morning screaming with just a little better planning :)

My appetite has diminished again which I am finding frustrating.  I am back to the force-feed of every calorie.  It was fun to eat kind of like a real kid for a few days.

Today was very productive.  Thanks to a friend who comes over a few mornings a week to help me, I got a lot of homework done today, walked twice around the block, moved a lot more today and even sorted through some of the boxes that came from Arizona.  I felt very good today.

Today's photo is in honor of my brother-in-law who got up and walked around the hallways at Huntsman for a bit today.  He received a bone marrow transplant 16 days ago.  This guy is my inspiration.

text from my sister:

Blood Clots and Hair Strands and Whiskers on Kittens

Blood Clots:  I am frequently asked about the status of my blood clots.  I am always impressed by the question because it suggests you've been paying attention to a major issue we have here. I am realizing we talked a lot about them at first and then, not so much.
The blood clot question is such a good one because so much moving forward is dependent upon my blood knowing when to clot and when to stop.  At this point, there is no new information.  I don't feel any new clots anywhere, and there won't be another scan to find them until we get closer to surgery time, which is slated for mid-November after I've completed three rounds of chemotherapy.  I am frequently asked why I don't insist they look sooner; the answer is that there is just nothing to gain at this point by having that information.  That information determines what happens mid-November--not today, and today's information doesn't decide anything about November.
I am still receiving two Lovenox blood thinner shots in my stomach each day.  Their job is to prevent new clots.  We will not be happy if I break through the Lovenox.  The shots do not hurt as much as previously, but I still dread each one.

This is the used Lovenox syringe house.  I dump it when it gets full

Hair Strands:  Yep, the hair is falling out.  I don't know what to expect in the timeline as to when we start cutting or shaving, but it is for sure falling out.  I have a friend who is a stylist and straightens my hair for me when I visit her house, and this evening when I went over for dinner, she came up behind me and started straightening. I noticed she would straighten a strand, throw a few strands on the floor that had fallen out.  Straighten one--throw a few.  Ask Wendy-- it is definitely falling out.
I'm still not sure what the plan is for the official hair gone event, but I will definitely keep you all up to date.

Took this tonight

This is from this morning

My appetite has been pretty good the last few days which has been fun but then today, it seemed to slip a little again which I don't really understand. Must eat.

Thank you for all you do to keep me swimming these days.  This is a journey no one should ever have to take alone.  I know the Holy Ghost is with me so I'm never all alone, but your ministry of presence continues to bless me each day.  Thank you so much

United For Ronald

Some of you know that my diagnosis is only one of a string of surprises for our family over the past 1.5 years.

The first major surprise was a Leukemia diagnosis in February, 2014 for Ronald, my younger sister's husband.  Long story, but told here in detail: www.simmonsunexpectedadventure.blogspot.com

Ronald is struggling right now.  We unite our love, prayers, and collective faith in his behalf.

Pray for Ronald.  Pray for our family.

We love you, Ronald

Just a Great Sabbath Day

I love that the Lord taught us the importance of making holy one day per week.  Regardless of the day--be it Friday, Saturday, or Sunday--having a holy day of prayer and worship can be such a spiritually nurturing experience.

I love the Sabbath Day.  Today was no exception.

I kicked it off with my MoTab Music and the Spoken Word at 9:30am, followed by the one I recorded last week that I was too sick to watch.  I felt great, and it felt awesome. As I got ready for church with my favorite band blaring throughout the house, I think I noticed my hair starting to fall out.  I'm not 100% sure, but I think something a little suspicious was going on. 

Ugh.  Please, not yet. Please, not ever.

Church was perfect.  But I've always been a church lover so that wasn't surprising.  The sacrament bread tasted super salty. That was a surprise. I've had a heightened sensitivity to salt lately and probably shouldn't have been surprised, but I was.

Primary is practicing for their 27 September Children's Program so it was so nice to just sit in the chapel with my most sweet, fabulous, and wonderful class.  I love them so much.

I had a lovely afternoon of visits and visitors with no pain and no nausea.  My stamina is embarrassingly low and, if I am going to feel better this coming week,  I need to push myself more to build strength for all that lies ahead.

My spirits are good.  I am eating good and healthy food.  I feel much better than I did a week ago.

I am grateful and take none of this for granted.  Thank you for every single prayer.

For Those Who Have Been Asking

Hi, this is Melinda, Michelle's sister.  Last week, we planned a family unification project in the form of Team Michelle t-shirts. Since then, we have received dozens of requests for the shirts.  The response has been so exciting.  We would LOVE to get as many of these out as possible to as many people as would like them.  

We have, for you, a couple of options.

1.  You can make your own.  Attached is the pdf. of the design which you can adhere to your own t-shirt. 

2.  We can have them made and shipped to you.  

There have also been numerous people asking for a way to donate to Michelle's medical expenses. Although she has great insurance, she still has mounting expenses.  Even her required 20% payment toward the expenses equals a great deal of money.

If you want to order a t-shirt (cost of printed t-shirt, shipping and bubble mailer included) click on the "Buy Now" button below. All t-shirt money is at cost to make and send the shirt. I tried to find the cheapest option. No one is making a dime off this option.  This is actual price.

Sizes

Youth Small Youth Medium Youth Large Adult Small Adult Medium Adult Large Adult XL Adult XXL Adult XXXL

To print your own shirt, download the pdf images at THIS LINK
 http://www.avery.com/vgnfiles/OP/en_us/Help%20Center/staticfiles/Light%20Fabric%20transfer%20instructions-11242008.pdf

For those who have been asking for a way to donate to Michelle's medical expenses--here's the link. 100% will go to Michelle for her co-pays, premiums and medical needs.

BPCDSF

Best Post Chemo Day So Far.

The day started out a little sketchy; I didn't know what to expect.  However, around 10:30am, my body turned a corner and actually felt quite good/great for the next eight hours.  I ate some normal food, went on a little field trip to WalMart, and enjoyed a few lovely visits where I actually engaged fully in the conversation without pain or nausea or fatigue disrupting.
Around 6:30pm, the triplet tumors (I named them Ding, Dong, and Dork) started to get all uncomfortable and crowded. I think there may be a fourth one in there by my spleen.  (If there is, I'll name him Dopey.) It happens frequently, usually at night, and feels like all of my normal organs are squished in there with three or four tiny footballs.  Discomfort had definitely set in but not pain, and without complaint on my end because of the eight great hours previous.
I have been told that each post-chemo day should get better and better, until I go back in and start the whole thing over again.  The science of it makes sense to me and definitely made a significant contribution to what I experienced today.  However, as a person of faith, I cannot discount the additional help I received today due to the prayers and faith of others. At 10:02am today, I received the sweetest text from  a friend.  I know it represents so many texts I could have and did receive today.  It reminded me of the power of each prayer in my behalf.  I cannot thank you all enough. Thank you.

Pretty cool, right?  So grateful. 

VT Friend

A couple months after I moved to Arizona, a friend of mine from church came up to me and told me she had just been assigned as my visiting teacher.  She wanted to know when she could make an appointment to come visit me.  I asked her if anyone had been assigned to come with her and she said, "no, just me."  Then I asked her why she was insisting on a formal visit with me when we were already great friends?  I thought that a principal objective of visiting teaching was to become genuine friends. Since we already had that, why was she going to insist on going backward in the process? She continued to be one of my closest friends my two years in Arizona.
When I left in the summer of 2014, I put my belongings into a storage shed because I had every intention of returning 90 days later.  Well, one thing led to another and after multiple months in Utah and multiple months in Boise, I am finding that going back to Arizona may not be happening anytime soon.
Within a day of my diagnosis, I felt an urgency to get the contents of the storage shed to Boise.  I called my friend and asked for a humongous favor.  Would she go over to the unit, remove and sell all of the furniture and leave the remaining contents in the unit.  I would then fly down, go through and slim down the remaining contents and then have them shipped in a Pod back to Boise.  Clearly, my pre-chemo self felt pretty ambitious :).
Besides agreeing to do what I'd asked, she modified the plan to an extent of sacrifice I would never have dreamed of asking anyone to do.  Her plan included many more people and far more work than I would ever have felt comfortable asking for.
Suffice it to say, at 4:30pm today, the shrunk down, sold-off, sifted through, packed into a U-Haul, pulled behind an SUV for 15+ hours, contents of my storage unit will arrive here at my house.  My friend, her husband and two of their four babies, will stay a bit, sleep in a Meridian hotel, and drive back to Phoenix with an empty U-Haul trailer.

In the Visiting Teaching section of lds.org, under the title "Purpose of Visiting Teaching", it states:

So grateful for a friend who tried to be a visiting teacher and then back to where it really makes a difference and that is in the nurturing of genuine friendship.  Three cheers for inspired church programs that give us the opportunity to really practice true religion. So grateful