Working on a schedule

So far I've figured out...the only guarantee with chemo is, there is NO guarantee.  There has been no consistence.  Last week was my full chemo week.  Some days I would start to feel a little better, only to feel horrible by bedtime.  Where others days I woke up feeling bad, but was able to get up and get out and about.
They say (they- being the cancer professionals) that I will get a schedule where I know when I'm going to feel good, and when I won't.  So far, I'm still working on that schedule.

On Friday afternoon my mom and SIL Tashia flew down to help for the weekend.  I had a lab apt on Friday to see how my kidneys were functioning after that first round.  I actually was feeling pretty yucky that day.  After we got home from the airport I got a phone call from Dr. Chipman (oncologist) and he said my labs looked great.  He said my kidneys were functioning perfectly  (big shout out to my kidneys  "GO KIDNEYS").
That did help to hear some good news.

On Saturday, Larry went to work and the rest of us got ready to go to "Truck or Treat" here in Fruita.  The kids got to wear their costumes and trick or treat.  I felt up to going, and it was nice to get out.  That's the first time I've really been out on probably over 3 weeks.  I'm not sure which is harder..feeling sick and laying down all the time...or sick of laying down all the time.
While we were out I all the sudden was craving a big breakfast.  Fried eggs, hash browns, toast, bacon.  If you know me, you know I don't typically like breakfast food.  But my mom took me right over to IHOP and I ordered (and ate) an entire breakfast.  My appetite is so weird right now.  I'm usually only hungry for one meal a day.  And who knows what that meal is going to be.  Weird things sound good.  Last week my mouth was pretty numb and I couldn't really taste food.  This week I'm starting to be able to taste again.

For the most part, I've been able to control any nauseousness.  I get sick to my stomach, and then I take meds to help with that.  Lar gives me about 8 pills first thing in the morning to help with chemo side effects.
Overall, I just feel achy and sort of flu like.  I'm really hoping this week I get better and better.  I really need to feel good in between rounds.  It just feels like I've been sick for a month (I guess I sort of have).  But hopefully I will find a schedule where there will be lots of days in between rounds where I will feel somewhat normal.

GOOD THOUGHT:
I had such a wonderful gift sent to me.  A family friend in Utah, Joni, owns a head covers shop.  She called and told me she wanted me to have a wig.  My mom brought down about 20 different wigs for me to try.  It was so fun to try different styles.  But then, I put one of the wigs on, and it was almost exactly my hair style.  I looked in the mirror and it looked like me.  The pre-cancer me.  I was so excited because I feel like it will give me the chance to go out and not always feel like  I HAVE CANCER.  It's going to be very surreal when the day comes that I lose my hair.  But besides the wig, I have had friends make me hats (with cute flowers), plus Joni sent some adorable hats and head wraps that my family from Utah bought for me.
I know there are so many wonderful people that are put right in my path right now and have been able to make this journey so much easier for me.  No matter how hard this feels, I know someone else had gone through this, and had an even harder time because they did not have the support that I have had.  My goal is to get feeling so good (eventually) that I can start trying to pay back all the wonderful people in my life.

                                 My kids made me a "kemo" pillow, and my mom made me a blanket to take with
                                  me to treatments.     

                                                              (I took this picture of Lar)

                                          (and Lar took this picture of me. I'm sure I was saying "Make sure you get                                   my good side" :)  I'm also hooked up to my port here)

                                         part of the chemo treatments.

I can do this....did I really just say that?

I've now had my official first round of chemotherapy.  I'm in the fight now.  There are some things I expected, and some things I did not.  I expected to feel really sick, but I'm actually managing the nausea for the most part.  I am tired and feel run down, but today I'm up and around.  

  So, here's how chemo went:

I am on a very aggressive chemo treatment called R-CHOP.  

Drugs in the R-CHOP Regimen

The R-CHOP acronym is composed of the following drugs:

Rituximab
Cyclophosphamide
Hydoxydaunorubicin (doxorubicin)
Oncovin (vincristine)
Prednisolone

Each of these drugs has it's own set of side effects, but each drug also has an important part in killing the cancer.

I was not able to have my full dose of the Rituxin, so I will have to try that one on the next round.  When I went back to infusion on Tuesday, I was hooked up to IV fluids.  I took the prednisone by pill, one of the drugs was in an IV bag, and the other 2 were in large syringes that ONC nurse would push manually into my IV.   

  The drug that has me the most nervous in the one that comes in a large syringe.  The medicine itself is bright red.  It's one of the harshest drugs.  It's the one that makes you lose your hair.  But it's also the one that aggressively fights the cancer.  As the nurse was giving me that medicine I decided to think of that as the "river of life".  As it was going in, I just thought of it going right to the cancer cells and killing them.   I am going to think of it as a positive drug going in to help me kill the cancer.  I think if I look at is an ally, it will help me deal with the side effects it causes.  

   After the CHOP drugs were give, I felt OK.  I came home that night and rested.  I was tired, but not "sick".  

Yesterday I went back to infusion for the last portion of the treatment which is a NEULASTA shot.  This is a really important part of the treatment because after Tuesday, I have lots of things inside my body killing off my healthy white blood cells.  The NEULASTA is medicine that "forces" my bones to produce new healthy cells at a rapid pace.  There are 2 down sides to this and one huge up side.

Down sides: 1.  It's a shot...in your tummy (ouch).   2.  It causes your bones to really ache.

HUGE UPSIDE:  It helps me from getting infection and starts rebuilding my immune system.  

So, here I am today.  Last night was a miserable night.  I felt like I was full of all kinds of pills / meds / chemo / shots.  I was achy and tired.  I went to bed at 7:30pm.  I didn't actually "go to sleep" though because I think the prednisone keeps you awake.  Larry had gone to watch Lauren cheer at the Super Bowl at Stoker Staduim.  I was hoping to be able to go watch her cheer in her final game, especially since it was at the college, but there was no way I was going anywhere last night.  When Lar got home he gave me an Ambien so I could sleep and I slept through the night.  I was hot and sweaty when I went to sleep (chemo causes hot flashes), and then I woke up this morning cold.  I got out of bed this morning and realized I cannot stand up straight.  They told me the bones that would hurt the most are your large bones, and for me, it's my lower back.  So I'm moving slow today and plan on just resting.   

GOOD THOUGHT:

I can do this.  This is doable to me.  I don't think chemo is like it used to be.  I think it's a lot easier to tolerate.  I know I'm just starting up a rocky road, and I plan on things getting a little tougher.  But I can do this.  I plan on coming out the end cancer free and stronger than ever.  

PS:  The Cowboys won the super bowl last night.  GO COWBOYS!!!! 

 I remember when I was a cheerleader and our high school team went all the way to the state playoffs and we got to play / cheer on the University of Utah football field.  And we won that game!  Such an awesome experience!  

The littlest things mean the very most

This morning I woke up and I realized it was "D" day.  Or should I say "C" day?
Larry was already up and had gotten the big kids off to school.  When I looked over in the spot where he had been laying in bed I say my little friend Hope.  I was actually glad to see her there.  I watched her sleep so peacefully all snuggled in warm.  I realized that I am still first and foremost a mommy.  I'm a mommy and I have  cancer.  They are two separate things.  When Hope woke up she looked at me a little strange.  I forgot she had already gone to bed the night before when my friend Natalie came over to cut my hair (I ended up getting what Larry calls a 'Annie Lennox' hair style-very short, but not buzzed). When Hope looked at me she kind of giggled and said "Oh, Mommy!  You cute hair short".  She said it a few other times, and that was that.  No big deal.  But I'm glad she liked it.  I think it could have been a little scarier had I shaved it completely off.  I think this gradual process will be easier on us all.
   So, Larry sent Hope off to Alissa's to have a fun day.  They were going to the dinosaur museum.  So all morning Hope kept roaring, getting ready to see the dinosaurs.
   Larry and I headed into the cancer center for my first real and true chemotherapy.  I first had a consult with Dr. V.  We had an interesting talk about bone marrow transplant (which is not something I would do right now because of the risk, but it is a possible cure for me in the future...)  Anyway, then I went over and got set up for my infusion.
    You sit in big, over sized recliner chairs that heat and vibrate.  You have your own personal TV over head to watch.  I had a cozy new blanket my mom had made for me this weekend, and a homemade pillowcase Lauren and Josh made for me last night.  I was set.  You would think I was in the lap of luxury if you paid no mind to the IV of poison connected directly to my heart. :)    And then we started to wait..... (this was at about 10am)
   At around 10:20 the ONC nurse came over and gave me my "pre-meds".  It was about 10 pills I needed to take.  Some were pain pills, some were steroids, a Benedryl, some anti nausea, another Ativan....etc.
It still seems so strange to me, since I'm a girl that would take 1 or 2 Ibuprofen for a headache.  Now I'm taking 10 pills to protect my organs, etc.
   I waited again until about 12:00 the nurse brought over my first real infusion.  It is Rituxin which is an immunotherapy type drug.  This is the one that takes 5-6 hours to put in because you have to watch for side effects.
  About 45 minutes into that infusion, my throat started to get really scratchy and feel weird.  The nurse stopped the Rituxin and had DR. V come over.  Dr. V said it was common to have an allergic reaction because your body just doesn't want all the crap pumped into you (can you imagine?)  So she gave me a big shot of Benedryl.  Then we started to infusion again at about 2:00.  I was sound asleep (thanks to the Benedryl) and all the sudden I could not breath.  It felt like someone had closed my wind pipe off.  And I felt hot and itchy.  4 or 5 nurses ran over and sat me up and shut off the infusion.  Dr. V came over to listen to my lungs.  When she lifted up my shirt she said I had welts all my back.  My face had swollen up and was bright red.  I had welts all over my face and neck as well.  I guess my body really didn't like the Rituxin.
  Well, 2 more hours later, and more Benadryl, the hives went away.  Dr. V said she wanted me to go home tonight and rest.  And then I will go back tomorrow for the rest of my chemo infusion.  We will wait to try Rituxin again in 3 weeks with my next cycle.  She said I should tolerate it better, when some of the tumors I have have shrunk down.
   So................I don't know if it really counts that I had some chemo today.  I feel pretty wiped out and tired.  Tomorrow at 1:00 I go back for the rest of the chemo.

GOOD THOUGHT:
It's been a very long day.  I know I have not had time to personally respond to all your wonderful messages and phone calls.  But I read them all, and they make me feel so good.  I am surrounded by the most stellar people.
   Some people have said they just are not sure what we need, or how to help.  Please know, you are helping just by keeping us in your thoughts and prayers.  In a situation such as this, the littlest things mean the very most.
  

                          (This is not me :)  But this is about my hair length now..maybe even a little shorter! )





A Conference Talk I Love

It's Chemo's Eve

Thursday night I made a mistake.  I looked at some things online that really scared me.  I saw some MD websites that said if lymphoma transforms into a more aggressive cancer, the prognosis is not good.  When I read this it was pretty late at night, everyone was in bed (except Lar, who quickly told me I should not be reading that and not everything you read online is not true) 
   I know not everything I read on the internet is truth, but I still had a moment where I laid in bed and just had the weight of what is going on just drop on me.  I was shaking and thinking I really may not be able to control this situation.  It was hard getting to sleep that night because I just had to keep myself from letting my mind wander to the worse case scenario. 
  The next morning I was scheduled to go back to the cancer center for an infusion.  As soon as I got there I told the nurse I needed to talk to Dr. V ASAP.  They started me on some IV fluids and some anti nausea meds and a steriod.  When Dr. V came over to talk to me this is what went down:

ME:  Here's what I read online and I'm really scared
DR V : Yes, your lymphoma has transformed from a grade 3 to a grade 4 (which is not the stage, it's more the speed it is growing).  Your spinal fluid came back completely clear of cancer which is good.  We are going to treat this very agressively, and I expect you to have a full remission. 

  Now, I know there are no guarantees, but this at least made me feel a little more relaxed.  Plus, to be honest, I think she added a little something extra to my IV ! :)   Ativan?  Maybe? 
  
   Anyway, I also explained to her that I was still having bad headaches when I stand up, and feel very weak and tired.  Overall, for the last couple of weeks I've either felt just OK, or yucky.  I'm a little tired of that.
She scheduled me to come in Saturday for more IV infusion.

   My mom and Tom got here Friday night.  They came with lots of goodies from family in Salt Lake (thanks so much Salt Lake family ;)  My mom went with my Satuday morning for my infusion.  When I got there, Dr. V came over and said she had talked to a neurologist and he wanted me to have a blood patch on my spine (I know that sounds kind of gross..but that's what it's called, and this is sort of a medical blog :) 
 She said that my spinal fluid was leaking from when they did the original spinal tap and they needed to patch it so the headache would go away.  Then she said I would go down to radiology in half an hour for ANOTHER SPINAL TAP.   Only this time they would take some of my own blood and put it on my spine to create a "patch". 
  So my mom and I headed down to radiology (and Lar met us there).  My mom had a good idea, she pulled out my lidocaine cream I use to numb my port, and she put in on my back where they would do the spinal tap.  It did help a little, but I'm not gonna lie, this spinal tap hurt more than the first one.  Not so much pain, as it was a ton of pressure on my back.  The horrific score for this one went up to an 8.  Yowch!
   So here we are today.  My back is still sore, I'm very weak.  I just keep telling my body:  Sorry, sorry, hang in there.  It's chemo's eve.  Tomorrow morning at 9:45am is my first official chemo infusion.  Scheduled time: 6 hours.  Tonight I will have a friend of mine come over to give me a "new look".  A look that I'm not looking forward to, but I know it is inevitable, I'm going to lose my hair.  So I'm going to lose it on my terms.  That is something I can control. 

GOOD THOUGHTS FOR TODAY:
  I went to Sacrament meeting today and heard my daughter give her very first youth talk.  She wrote it herself and did a wonderful job.  Larry was the High Councilor speaker in our ward, so I was able to hear his talk as well. 
I call this good "thoughts" (plural) because the closing song in Sacrament was Count your Blessings.  And I wanted to mention a few:
1.  I'm so lucky to have my family close and able to come and visit and help take care of me.  My mom and Tom got so much done this weekend to help me feel ready to start chemo tomorrow. 
2. I'm so thankful for Larry's job.  His job has been such a blessing to us in so many ways, but for him to be able to leave work to come and be by my side is one of my biggest blessings.  I am so thankful for his boss being such an understanding man, and for all his co-workers picking up slack for him while he's gone. 
3.  Hope's potty taining is coming along.  I would say she's a good 96% there.  And trust me, that is a huge blessing.
4.  Lauren and Josh have been such troopers.  It would be so hard to have this all going on your home when you're 9 and 12 years old.  We talk a lot about what's going on.  I think it's important to be honest about the situation.  They're hanging in there.  I tell them they're my "Warriors", fighting right along with me. 
5.  I have to again mention the people around me.  Larry mentioned today in his talk  that sometimes angels are sent to your aid when you need it.  In the scriptures, even Christ has come to someones aid.  But a lot of times the aid you need is sent to you in the form of those closest to you.  Those who will pick up your life for you, so it doesn't fall when you just can't carry it.  They just do it.  And I can't think of anything closer to having a gift straight from heaven. 
  

One foot in front of the other

I did not feel good yesterday.  I was either asleep, or trying to sleep.  I think most of my problem was a headache that would hit every time I stood up.  I had a lot of dizziness as well.  And some nausea.
   I had a good nights sleep and thought today would be better.  I woke up feeling about the same.  So earlier today I called Dr. V and told her how I was feeling.  She said I was dehydrated as well as suffering some some side effects from the spinal tap as well as the chemo that was give to me during the spinal tap.
  She had come down to get some IV fluids and also some anti nausea medication.  I was sitting in the "chemo" department.  I've walked by it several times of the last couple of years.  But for some reason I never really pictured myself there.
  When I found out I was going in to have IV fluids, I put some lidocaine on my skin where the port is.  I figured if anything it would take the edge off.  But I was very pleasantly surprised when the nurse said "take a deep breath while I put the needle in", and then she said "OK, I'm done".  I felt nothing.  NOTHING.  Not even pressure.  I was so glad about that.
  Then Dr. V. came over to talk with Larry and I.  She said they received some info back on the lymph node biopsy and it looks like my slow growing lymphoma has transformed into a more aggressive lymphoma.  Because of that, she wants to change my chemo to a more aggressive chemo and start first thing Monday morning.  I will be getting R-CHOP chemo.  She said she expected the cancer to respond to this, and we're looking for a full remission.  I will have chemo once every 3 weeks for 6 cycles.
    Again, this is one of the times, I just put one put in front of the other and move forward.  I will go in tomorrow for more IV fluids, some anti nausea meds and also an echo test of my heart.
        I had a wonderful opportunity to have my Stake President come by my home tonight and give me a Priesthood blessing.  It was such a wonderful way for me to feel uplifted and strengthened.  It was a strong reminder of something I already knew; Heavenly Father is in charge.  But He is also with me.  He would not leave me alone to go through this, just as I would never have one of my children go through something like this without being by their side, holding their hand.  A parent's love is so unbelievableably strong, and can only compare in such a small way with the love our Father in Heaven has for each of us.  This is how I know I'm in good hands.  I have no doubt.
    I think, when you are the one going through something like this, there is an element of guilt that goes right along with it.  Guilt that I can't take care of my family like I would like.  Guilt that I have to ask so much of others.  Guilt that I'm not letting people help me.  But hearing the words in my blessing and in my husbands blessing confirmed to me that those around me are given the strength they need.  I really needed to hear that, because I've already decided I'm going to fight like h - e - double hockey sticks.  But I need to know that those around me are going to be OK.  I've been telling those around me "I'll be the brave one, you be the strong one".

GOOD THOUGHT FOR TODAY:
If this cancer thought it was going to get the best of me...well. it's got another thing coming.  I believe in the power of prayer.  I believe in the tender mercies of God.  I believe in miracles.  
    

No sugar coating tonight

Tonight I'm sick.

The surgery went well this morning.  I came out of the anesthesia feeling pretty good.  The surgery was at 7am and I was home by 10am.  I took it easy today, but I feel like I've just felt worse and worse and the day has gone by.

I think the events of the last 7 days have just caught up with me.  I'm sore.  The nurse blew my vein when she put my IV in for the surgery and I have a 4" black / blue circle on my forearm.  

Larry has spent the day keeping things up and going around here today, and I am so thankful for his help.

I have 2 good friends that are pharmacists.  I wish I could call them right now and see if it's OK to take Ambien with Lortab.  But I think it's too late.

Tonight I feel like I have cancer.

Good Thought:
I have wonderful friends helping me out.  My needs and my families needs are being met.  Now I am going to focus on feeling better.  Tomorrow is a new day!

There's a lot you can learn from even bad experiences

The most amazing thing happened.  I woke up this morning and felt like my old self.  I didn't feel sore or tired.  I had lots of energy.  It was such a nice change.  I got lots of things done around the house. 
   I just kept thinking what a bummer it was to feel so good, knowing that I had a spinal tap coming up.  I sort of wanted to jump in my car and drive myself to Vegas (or somewhere far away from the hospital anyway) :)
   So, at 1:00 Lar came home and picked me up for my appt.  We had the spinal tap scheduled at 2:00 and then I had an consult with the surgeon scheduled at 4:00 to try to set up my surgery.
  Here's how the spinal tap went:  I went back into the room and the radiologist came in.  He had me lay on my stomach on a "floating" kind of hospital bed.  Larry was able to stay in with me the whole time.  I truly anticipated the procedure to be a 10 out of 10 on the horrific scale (even the lady who checked us in and asked what I was being seen for cringed and said "ooohh, that sounds painful" when I told her I was there for a spinal tap)  (You can admit it, you cringed too) (but isn't it her job to not say that?? :)
  Anyway, the next part was the "numbing" park.  It felt like a couple little bee stings in my lower back.  And then I just held on to Lar's hand as tight as I could waiting for the horrible pain I knew was coming.  But it never really came.  It was a little uncomfortable at best.  The worst part was waiting to get enough spinal fluid.  They wait for it to naturally drip out, which is where the floating table comes in.  The adjust the table to kind of tilt your body so gravity takes over.  You may, or may not have ever wanted to know this but...did you know that your spinal fluid is crystal clear.  Like water.  The doctor filled up 4 vials, and I thought they were empty, but then he explained how clear the fluid is.  Hmmmm.  Who knew? 
    Then at the end, he put some "chemo" drugs back into my spine.  He said if there were any microscopic cancer cells that that would kill them.  So I guess I officially had my first chemo treatment today.  Whew!  Glad that's over!  I would say that whole procedure ended up being a 6.5 on the horrific scale.  Larry may disagree with me since it took 30 minutes for the circulation to return to his hand.  ;)
  After the spinal tap I had to lay flat on my back in recovery for 30 minutes to make sure I didn't get a "spinal headache".  Then we were off to our next appt.
   I was glad the surgeon could get me in so quickly for a consult.  I had planned on telling him how I needed to have the surgery this week because I absolutely have to stay on schedule to be done by Christmas and yaddy-yadda-yadda.  I was just gonna tell him.
  So he came in, talked for 2 minutes about the surgery and then said "Do you want to do it tomorrow at 7am?"  And I said "I'll have to check my schedule!"  j/k
  Just kidding about the check my schedule part!  I'm going in tomorrow at 6am to have the surgery at 7am. 
He said it would be about a 2 hour surgery.  And then it will take about a week to get the results back.  That would put me having chemo starting next week if we stay right on schedule.  Oh wait, I mean having MORE
chemo...remember I already got the first one over with today! 

GOOD THOUGHT FOR TODAY:
Talking to my friend tonight, she asked me if I ever get mad or feel bad and I told her that I usually only allow myself a day to feel bad because it takes a lot of energy to have those feelings (mad, sad, scared etc).  And having those feelings doesn't change my situation.  So instead, I reserve my energy for having fun with my family and for thinking of things I can personally gain from this experience.  As it turns out, there's a lot you can learn from even bad experiences.  And the truth is, no matter what your situation is, remember..it could always be worse.  People go through things way harder than I do every single day.  When I look at it that way, I realize...I am blessed.

PS:  Every thought and prayer sent my way has been felt and truly appreciated!  ~♥~