Sunday, December 26, 2010

* Merry Christmas to ME *

So, there are lots of word to describe this last week;
Exciting, Busy, Informative, <painful>, Fun, Wonderful, Magical, Sad.

Exciting, Busy & Informative:
We drove to Salt Lake on Monday morning.  We left early because it was supposed to snow all day.  We decided to drive down I-70 to Salina, UT and then cut through to I-15.  We knew it would take a little longer to get there (it's usually exactly a 4 hour drive), but we didn't really factor in the slow drive in the snow storm and the newly potty trained little 3 year old bladder that would require extra potty breaks.  So......SEVEN HOURS LATER we arrived and Grammi and Grandpa's house.
Tuesday morning me, Larry, my mom and brother all headed down to LDS Hospital for my first consult appt.  Basically they told me it was wonderful that my last PET scan showed "CR" or Complete Remission.  They thought it would be best to extract stem cells now and wait to see if the cancer ever comes back.  If it does, I would have healthy stem cells stored for a bone marrow transplant at that time. 
I had scheduled my next appt to be that same afternoon at Huntsman Cancer Hospital.  We thought we would have an hour or two in between appts and had talked about all the fun places we could go for lunch downtown (PF Chang or Training Table or Hires, etc), but as it turned out, we only had 15 minutes to get from the Avenues up to the U.  Luckily we made it just in time, but no yummy lunch for us.  We shared a little bag of cookies from the vending machine.
My Appt at Huntsman was not quite as long, and they basically said the same thing.  They also said they wanted to do the stem cell extraction after my 5th chemo treatment in January.  The good thing about that is then I will have one more chemo treatment in February and then I'm DONE!!  Hooray!
We decided to have the extraction and transplant (when necessary) at Huntsman.  We really liked both facilities, but the fact that I have rapport with a Lymphoma Specialist at Huntsman that I trust, it just feels like an obvious choice.  Dr. Glenn (my Huntsman specialist) works so closely with the transplant team, it just felt seamless. 


<Painful>
On Wednesday Larry and I headed back up to Huntsman for an Appt with Dr. Glenn.  She agreed that my PET scan looked good.  She also mentioned that my bone marrow would need to be cancer free to truly be considered "CR"-Complete Remission, but she thought that would be the case since I had already had such a good response to the chemo.  BUT.......I would need to have another bone marrow biopsy to confirm that. 
YUCK, ICK, OUCH.    I have had a few procedures, as you know.  But the one that stands out in my mind as the most painful is the infamous  "Bone marrow biopsy".  In case you didn't know...this is how this procedure goes: (don't read if you're not into medical details :)
***************
You lay on your stomach and a needle is inserted into your lower back on the side. Lidocaine is administered to numb the area (lots of burning at this point).  Then a larger needle is inserted down to your large pelvic/ hip bone.  Once the needle is inside the bone, the liquid inside the bone (bone marrow) is extracted.  Problem is: the lidocaine can only numb the skin, not the actual bone.  So, when they are extracting the bone marrow there is a lot, a lot of pain.  And there's really nothing they can do about that.   Then they put another needle/tool down to your bone and actually take a piece of the bone.  This part doesn't hurt as much as it is very uncomfortable.  It's mostly a lot of pressure, and if you think about what they're doing it can really freak you out.  And then...it's done.  Probably 15-20 minutes total.
I told Dr. Glenn I was very apprehensive about the procedure when she asked if I would have it done RIGHT THEN.  She said she would give me some meds to help relax me.  But, when the nurse came in to give them to me she said they were Ativan and Morphine.  I've had Ativan before during chemo week, and I've had morphine before.  I asked her if these meds would kick in after the procedure was over , then I would just feel groggy all day, but not have the benefits for the actual procedure and she said "yes".  So I said "Then I don't want them!".   I can't believe those words came out of my mouth, seriously.  But they did, and I'm glad they did because when the procedure was over I was sore, but not groggy and miserable.  I'm not gonna lie though; I'm sooooooooooooooooooo glad it's over! :)
***********************************************

Fun, Wonderful, *Magical*
We had such a fun week in Utah.  We went to Grand America Hotel and did their lobby Christmas scavenger hunt.  Then we rode Traxx down to the Temple and saw the Christmas lights (is it just me, or were there a lot less lights this year??  Still beautiful though).
We had a big family Christmas party on Christmas Eve.  All the cousins put on a "nativity" program.  It was adorable.  Hope was an angel...literally.  I didn't know if she would go out in front of every one and stay there.  But she did great.  She loved being an angel. Lauren was Mary and Josh was a wiseman.  They were so cute and did a great job too!
And then.....Santa found us in Salt Lake.  He left lots of awesome presents for every one.  We had a wonderful Christmas!

SAD
The sad part was when we packed up and had to leave.  It was such a fun week.  Thanks Grammi & Grandpa for everything ♥



I have a couple extra bonus days before I start round 4 of chemo.  I go in on this Wednesday for labs and an appt with Dr. V.  Then I will have Rituxin and Chop on Thursday and more Rituxin and Neulasta on Friday.

I've really enjoyed this extra "feel good" week in between chemo treatments.  And with the wonderful news we received after my last PET scan I have absolutely no complaints.  I had a wonderful Christmas with my family.  I truly love this time of year.  I hope you all had a wonderful, Merry Christmas as well!  ~♥ 


ps:  This is my first blog post on my brand spankin new laptop.  Cute huh?  Merry Christmas to ME !

CLICK HERE FOR A BEAUTIFUL VID ABOUT THE BIRTH & LIFE OF OUR SAVIOR

Wednesday, December 15, 2010

Click HERE: to read about a MIRACLE

Well..there's just no other way to put it.  

I had my PET scan yesterday.  It went about the same as the first one.  Actually...it went a little better because during the part where I have to sit completely still for 1 hour, they let me listen to my ipod.   Now that I know about Pandora radio (best thing ever!) I put in on Jim Brickman Christmas channel  (if you don't know who Jim Brickman is...you need to find out -STAT!) Needless to say, it helped the time go a little faster.
  Then when I went actually in to have the scan they let me take my ipod  with me to the scan so I could continue to relax, me and Jim, during the scan.   It was wonderful!

  So, now the MIRACLE:

I received a phone call from my oncologist office and she said the report came back as follows:

Every location there was cancer from previous scan is 100% resolved.  Meaning it's gone.  100%
Then I said "Even where it had spread to the bone in my spine?"
And she said " Even there!".
And then she said............."Merry Christmas".

And then I said nothing  ('cuz I was a little teary)

But my next thought was "Thank you".  First and foremost, thank you to my Heavenly Father because I think of this as nothing less than a miracle.  I know ultimately I only have so much control over the course of my life.  I know that at all times my life is in His hands, and every day I have is a gift from Him.
But then the list of thank yous goes on and on and on.  And you're on the list!  I will never be able to express the gratitude I have in my heart for all those who have shown me and my family love and concern.

I will continue with my next 3 rounds of chemo because if there is any trace of cancer at all, it needs to be gone.  I will also still have my BMT consults next week and harvest clean bone marrow.

I will continue to fight this fight.  From day one I planned on winning.  I know it's not over, but it feels so good to know I'm in the lead!  ~♥

                                                   ( My best radiology report so far.............)



Saturday, December 11, 2010

Center of Excellence


I'm very much into the holiday spirit now.  My Christmas shopping is about 99% done, and now I feel like I can just sit back and enjoy the holiday.
   My next treatment is not scheduled until the week in between Christmas and New Year's, so I get an extra "feel good" week.  I'm considering this a present from my oncologist to me! :)

  I got a phone call last week from my oncologist at Huntsman (Dr. Glenn).  We talked for about a half hour about what her thoughts were on my cancer / BMT.   Here are some things she told me (in no particular order :)

1.  When my cancer transformed into a more aggressive cancer,  I then had aggressive cancer cells, as well as slow growing cancer  in my body.
2.  This round of chemo should kill all the aggressive cancer, as well as the slow growing cancer.
3.  The slow growing cancer will eventually come back; although that could be years down the road.
4.  There is no proof that having a BMT at this point will extend my life any more than just having the 6 rounds of chemo.
5. It is a good idea to pull stem cells and store them at this time, because they will be more viable later down the road if they've been exposed to less chemo.

That's mostly the gist of what we talked about.  But it was good to hear her opinion on the matter.

I will be going in this next week for a follow up PET scan to see if the cancer is gone.  Then the week of Christmas I will be taking those results to 2 consult appts with BMT specialists.   I had already scheduled to have a consult at LDS Hospital, and then when Dr. Glen called she said she would have the Huntsman BMT group call to set up an appt.  At first this may seem somewhat redundant, but like I said before, I need all the info I can get before committing to something as big as a transplant.  Even just having stem cells harvested and stored, I want to make sure I'm at the best possible facility.
  I called my insurance to see if one was covered over the other (that always makes the decision easier :).  She said that they cover facilities considered "centers of excellence"; meaning they have a very high success rate, etc.  Of course that's where I would want to go, right?  So she checked LDS and Huntsman and told me they are both covered, and they are both "centers of excellence".  So she she set a contract for me under both facilities, and told me it was good for me to get a few opinions.  I was glad to hear that from the source that ultimately will facilitate paying for the services!

   So, long story long....  I will be seeing TWO specialists at TWO different facilities at TWO different appointments....on the same day.  That should help me make ONE huge decision.  But either way, it's looking like I will be having the stems cells harvested,  stored and saved for a future recurrence / transplant.

GOOD THOUGHT:

I am the proud recipient of answered prayers.  Whose?  YOURS!  I just want to thank you all again for you continued thoughts and prayers.  Anyone who has gone through any sort of trial will attest to this:  Prayers on your behalf are what keep you going and moving forward, even when you just don't think you can.  So thank you, thank you all again!  ~♥
( From last night at the Sutherlands event with Santa.  Josh (equipped with a balloon sword)  and Hope could not wait to help the SA bell ringer)

Friday, December 3, 2010

Hallelujah!

I had mentioned before "chemo brain".   It really is a real thing.  Today I started going through my notes I had taken the week before my last chemo.  They were notes from my phone calls to my oncologist in Utah (Dr. Glenn) and also the BMT (bone marrow transplant) clinic at LDS Hospital.  As I looked over the notes I could not remember where I left off with any of them.  Had I scheduled? Was I supposed to call back?  I hate not feeling like my brain is keeping up.  Let's hope this is a very temporary side effect!
  So I followed up and first called Dr. Glenn's office at Huntsman.  I talked with her nurse who told me this interesting news:

ME:  Did I schedule an appt to see Dr. Glenn on the 22nd of Dec? 
DEBBY (nurse):  Yes, but Dr. Glenn has looked over your results from your current labs / pathology /scans, and she thinks that this round of chemo could be a cure for you.  She is going to look over it more closely before your appt, but she feels a BMT could be jumping the gun.


So, at first I felt this was great news.  But because of the type of person I am, and I want to make a VERY educated decision, I still called LDS BMT clinic and verified that I had an appt with them on Dec 21st.  (And I did).  I will still get another opinion from a BMT specialist because I feel that if I look for all the info available to me, and I pray about it,  I will know what is right for me.  I'm also having a follow up PET scan on the 14th of Dec to see how this chemo has affected the cancer.
 

  Of course, I would love for this round of chemo to be a "cure" (which mean no sign of disease after treatment).  But I also know there is a possibility of the cancer returning at some point.  It could be years and years down the road.  So I'm trying to balance my decision between having the cancer gone for a long, long time (possible forever), and doing the least invasive procedure.  Not that R-chop in non-invasive, 'cuz believe me, I feel invaded.  But if this round of chemo is all I need for now.....HALLELUJAH!

CHEMO UPDATE:
  So, this week was chemo week.  I was able to have the whole treatment in 3 days.  On day 2 (Tues) I had Rituxin and CHop, and on day 3 (Wed) I had the rest of the Rituxin and the Neulasta.  On my previous treatment I was only able to have the Rituxin put in at a max drip of 100.  When they bumped it up to 150 I had an allergic reaction.  But this time was different.  On Tuesday I was able to have the drip at 150 and on Wednesday I was able to go up to 250.  What is the benefit to this?  It takes a lot less time to receive the treatment.  It means 2 1/2 hours for injection as opposed to 6 hours.  YAY!
  I have actually been feeling relatively good.  I feel a little achy from time to time, but I started taking Aleve and it seems to be helping.  The biggest side effects this week are: 1. Numbness in my fingers 2. Shaking.
Both of these side effects have happened with the other 2 treatments and seem to go away in week 2 and 3.

Did I mention,  I'M HALF WAY DONE!!!  I'll never forget my first day of treatment, sitting in the recliner thinking "I can't believe this happening to me".  My nurse Serenity (cute name for a nurse huh?) sat down by me to go over everything and I just looked at her and I'm sure my face said it all.  She just looked right back at me and said... "You can do this.  You really can do this."  She made that statement like she was just so sure of it.  So you know what, I just decided to believe her.  And now, I'm half way.  Whew!

GOOD THOUGHT:
Tomorrow is our ward temple day.  Well, of course I had no plans of going, I usually don't even attend church on my first week of treatment.  But this temple trip is different because it's my daughter Lauren's first youth temple trip.  I'm in the Young Women's Presidency, and I love going to the temple with the youth.  This whole year, I've been so excited to go with Lauren for her first time.  But of course having it fall on treatment week one meant I probably would not be going.  WELL.....as I said before, I've been feeling pretty good this week.  Compared to other week one's, I'm feeling great.  So I'm going tomorrow.  I can't wait.  It's experiencing the wonderful things in life that help balance out everything else I'm going through.  So yep, I'm going.  Have a great weekend!  ~♥

Monday, November 29, 2010

Almost half way done!

Today starts round 3.  After this week I will be half way done!  Hooray!

I went in to Dr. V's office and had my lab work done, my IV put in my port,  and an office visit.  Dr. V said she is going to schedule for me to have a PET scan in a couple of weeks to see how to chemo has affected the cancer.  She can no longer feel any of the lumps that were there prior to treatment, so that is a good sign.

  Tomorrow morning I go in for Rituxin infusion and also the CHoP chemo.  And then Wednesday I go in for the rest of the Rituxin infusion and the Neulasta shot.  Now that we know how fast I can take the Rituxin without allergic reaction,  they can better plan how long I will need to be there.  Also, this makes my treatment 3 days instead of 4, which means I should feel better one day sooner (I hope)!

I talked to Huntsman Cancer Center in Utah about a consult for a bone marrow transplant.  The transplant coordinator there told me my oncologist at Huntsman (Dr. Glenn) did not think I needed a transplant.  But she also mentioned it had been a while since I had seen her and she may not have all my current info.  I'm sure she doesn't because the last time I saw her was right after I delivered Hope (3 years ago).  So I scheduled an appt to see her.  That way all my records will be transferred down to her.  I would feel a lot better with her opinion if I knew she had all my scans, labs and pathology from the last 3 years.

  I will go to Utah to see her the week before Christmas.  If she does feel like I need to have a transplant, I will be able to have a consult with the transplant doctor while I'm there as well.  I'm very interested to hear a second opinion,  especially since the specialist from Denver was pretty adamant that I needed to have a transplant at first remission.

  Larry asked Dr. V what her opinion was on the transplant.  She just mentioned that it was a very good chance for a cure.  I told her I have always felt like I would overcome this disease and live a very long time, but I was still trying to figure out exactly what the path was that I would need to take to get there.

FREE ADVICE FOR ANYONE GOING THROUGH ANYTHING MEDICAL:
1. Always, always be in charge of your own health.  Always get second, and even third opinions.
2. Always listen to yourself when it comes to your own health.  No doctor, regardless of their education, should talk you out of, or in to something you know to be different.
3.  Search, Ponder and Pray (ever heard that before? :)  In reference to your health:  Search means "GOOGLE", and pray means pray.  But the ponder part is where you have to really listen.  It's what you will hear in your heart when you're very still.  That's the part that I think has lead me to where I am now.  Don't ever forget to listen.
4.  Don't be afraid of traditional medicine.  It's tried and true. It's studied and it works.
5.  Don't be afraid of non-traditional medicine.  There's a lot to be said for trying other forms of treatment.   Even if it's combined with traditional medicine. It  all goes back to being in charge of your health.

At my appt today I checked in and picked up my green form.  It's a cancer form.  It has to be filled out at every appt.  It's a questionnaire about how your feeling, side effects your having, etc.
I sat down across from a sweet little older man.  He said "You look like you're feeling pretty good for having to fill out one of those green forms"  and I told him this was my good week, but that I would be having a lousy week coming up.  He said he knew what I meant, he was going through chemo right now as well.  Then he said  "We're just doing the best we can to stay on this side of the dirt".  I just thought that was really funny (and true).

GOOD THOUGHT:
As I was driving home from my appt today, the song "Everybody-Rock Your Body" by the Backstreet Boys came on the radio.  I could not help but do the "car seat dance".  I'm actually pretty good at it.  Really, it just requires a lot of shoulder action, and also some bum bouncing.  You can't help but feel great while hearing a great song and dancing along.
   I've always been a "car seat dancer" (you too?).  When Larry and I were first married, someone from his work had driven past us and saw us.  The next day he told Larry he had seen us out driving, and then he said "Your wife was bouncing all around, what was wrong with her?"  And Larry explained that I was just dancing.  :)  Listen to that song....I promise you'll be dancing too!

Thursday, November 25, 2010

I think I can BRAG because I'm AMAZED

So,  my cousin Derrick and my Aunt Eileen, knowing I would not be feeling up to doing much decorating this Christmas, offered to come down and decorate my house for me.  I was thrilled because Derrick has many, many talents.  Some of those talents happen to include decorating and cooking.
  Derrick lives in Salt Lake, so he drove out Tuesday with a car full of Christmas decor.  I had my tree up, but not a one other sign of Christmas in my house.  (see these before pics) 
   Well, fairly quickly Tuesday night the transformation began:
                                                           Josh helping decorate
                                                  The finished tree  (Shiny Brite ornaments were the inspiration for this tree)
                                         A hot cocoa break
                                                   Lauren drinking hot cocoa
                                             My Christmas living room
                                                
                                                        

      
                                 Derrick making more homemade bows.  Between the tree and everywhere else, he  must  have homemade 30 bows!  I told you-the guy has TALENT!   I think my mom is telling Derrick how talented he is in this pic!  :)
                                              Lauren and Larry putting the lighted garland around the cabinets
Even the kitchen light fixture has been "holidayzed"



Right this minute Derrick and my mom are cooking a fabulous Thanksgiving dinner complete with Pomegranate marinated turkey, homemade stuffing and homemade rolls.  Do you want to see my Thanksgiving centerpiece?  Derrick asked if I was done with the pumpkins I had sitting on my front porch.  I told him I was, thinking he was going to throw them away.  Next thing I know, here's their new place in life;
sitting in the middle of my Thanksgiving table.




See??? Talented huh? I'm very thankful to have been the recipient of such a wonderful gesture by my cousin and aunt and their family. I will thoroughly enjoy sitting in my Christmas house enjoying the beauty he created.  THANK YOU, THANK YOU!!!


I hope you all have a wonderful Thanksgiving holiday!
And I hope you all remember to wear comfy clothes!

Tuesday, November 23, 2010

Can't Wait

A transformation is about to occur in my living room.....


You just can't wait to see it!!!
Stay tuned...........................

Thursday, November 18, 2010

A girl's got A LOT to live for!

Today was life changing.

I had an appointment with a transplant specialist from Denver.  He is with the Rocky Mountain Blood and Marrow Transplant Program at Presbyterian-St.Luke's Medical Center in Denver, CO.  (that's a mouth full)

It was a consult appointment, so I expected it to be about 40 minutes long....but 2 1/2 hours later we had some very interesting information to think about. 

First a transplant coordinator came in to talk to Larry and I about what a transplant entails, and then Dr. B (the specialist) came in to go over the specifics of my case.  He said that with lymphoma it is not a matter of "if" it will transform to a higher grade, as much as "when".  He also said he didn't know why mine had transformed so quickly ( usually it takes years and years to transform).  But, since it had transformed into a more aggressive cancer that I would be a good candidate for a "first remission transplant".  Basically, that means, I would finish out my 6 cycles of R-Chop chemo, and then immediately harvest and transplant my own clean, cancer-free bone marrow (autologous).   
   Dr. B said having this done would give me a 70% chance of long term survival cancer free.  Let me just repeat.....SEVENTY PERCENT.   So, you would think that's a no-brainer...and it is.  And yes, I will have this done.  But the logistics are going to be the next thing to figure out.  There are several steps in preparation for a transplant.  Plus there are lots of pros and cons.  

CONS
1. He works out of Denver, which is where I would have the transplant. ( I live in Grand Junction= 4 hrs away)
2. Once I start the process, I would be IN-PATIENT for 30-40 days.
3. They would have to completely remove my immune system (the sick one), to replace it (with a cancer free one)
4.  My kids could not visit my in the hospital (see #3)
5. There is a 3 month recovery, plus about 1 year before my immune system would return to "normal"
6. I would be away from my kids for 30-40 days

PROS
1. SEVENTY PERCENT CHANCE OF LONG TERM SURVIVAL

These lists are partial, because there are so, so many details.  I will also be getting a 2nd opinion possibly in Salt Lake.  A lot of options to weigh. 

CHEMO UPDATE:  I have been feeling fairly good this week.  I am still very achy from the Neulasta shot, but the doctor today said that was normal for it to take a little longer with each treatment as it takes my immune system longer each time to recover.  Also, tonight I'm trying a new sleeping pill :)  Wish me luck!  I'm tired of seeing 3am!

GOOD THOUGHT:
How 'bout a good pic instead??


I know right??  A-dor-able!!!!   A girl's got a lot to live for!!!





Sunday, November 14, 2010

"Arrrgh, me Hearties"

                               (This is Larry's chart to track what medicines I've taken each day)
                                         (my medicine tote)

Day 25 of this journey also means round 2 is done.  I'm feeling very encouraged that I was able to take the whole Rituxin treatment as this was made very known to me how important this part of my treatment would be.   I was only able to have to the treatment put in on a 100 drip, where most people have it at 400.  But I always like to take things slow, see where they go.  Why rush into things right?
  This week I've had the typical side effects.  Tired, achy, headache.  But I've felt this week like cancer, or I should say the treatment of cancer, seems to take away the very essence of who I am.  I can't do basic things that make me who I am.  I can't move quickly, I don't feel any strength in my bones (although I know that means the Neulasta is working), and chemo brain?  Yes, that's a real thing.  I feel like my brain is in "sleepy mode" saying "I'll remember that later, maybe" and focus on something?  forget it!
   I'm still also working on getting some good sleep.  People have asked me if going through chemo is harder or easier than I thought.  My answer:  In some ways it's a lot easier (I'm not hanging out in the bathroom throwing up 24/7)  in other ways it's harder ( the chemo brain, hair loss, not sleeping, etc).  But overall, I feel like this round has gone a little easier.  I went into it feeling better than I did the first time.  My first round took until Tuesday before I felt like I could even be up and around, and this round I felt OK yesterday.  Still not totally myself, but I think I'm getting better a little faster.
   Larry's mom was able to come and stay with us this week.  It has been so nice to have her here helping, and to just be able to have my kids come home and know someone will be here for them.
   So this week I've been trying different things besides my wig.  I do wear my wig when I go out in general.  But when I'm home or just going to the cancer center, I've been trying other things.  My brother and his family gave me some hats and scarfs  so I decided to try the scarf  for my last day of treatment.  This may sound strange unless you're in my family, but I like pirates.  I have been known to call myself "Dread Pirate Roberts" and throw out a little "Arrrrrgh me heartie" every now and again.  So the day I wore my scarf, I put on my meanest, bravest, cancer-fightingest face (yes, in the pic I'm, trying not to laugh-don't laugh at me), and went in fighting like a pirate.  Funny thing is, I did get lots of compliments on the scarf 'cuz it is just dang cute.  (I should've shown them the mean face that goes with it :)



                                                 (yes, this is the scary, mean cancer-kicking face)







    ♥♥♥  King of Hearts update:  I've been wearing my heart monitor since Thursday.  I've recorded times where I feel like my heart is racing, which oddly enough is only when I'm laying completely still.  I'm hoping to be able to get some feedback on that this week.  I really, really hope it's an easy fix and not something to do with the placement of my port.  I'll update on that later.

GOOD THOUGHT:
  So, now I've pretty much put out there the negative side of my treatment week.  Arrrgh.  But I wanted to share with you something I found very uplifting:


CANCERS SO LIMITED 
(Version submitted by Kristen Homandberg, Pipestone Minnesota.)
It can't cripple love
It can't shatter hope
It can't corrode faith
It can't eat away peace
It can't destroy confidence
It can't kill friendship
It can't shut out memories
It can't silence courage
It can't invade the soul
It can't reduce eternal life
It can't quench the Spirits
It can't lessen the power of the resurrection.

Have a wonderful Sunday!  ♥~

Wednesday, November 10, 2010

Round 2 goes to the girl in the comfy sweats

As "substitute poster" I have been given license to go through the happenings of the day. I hope I do justice.

We were feeling pretty good about yesterday. Even though Jen had a negative reaction to the Rituxin, through patience and good nursing, she was able to finish it out. The wonderful thing about succeeding through something difficult is that it gives us precedence to a situation where we know we can push a little more and get through it. So today started a little more upbeat knowing Jen was able to take all the Rituxin yesterday and last time had no serious hang ups with the CHoP. Been there, done that. Also having one round behind us already we have some insight as to how to stay ahead of the nausea, headaches, and other side effects to hopefully lessen their impact. If you don't have a pharmacist close by I will share with you what they would say.(fortunately we have 2 on speed dial). It is easier to prevent nausea than to try to recover from it. Right now Jen is resting comfortably. We know a good night sleep is priceless and right now very necessary. Tomorrow is the Neulasta shot which last time was pretty brutal. It makes your bones ache from the inside out, which is a by product of the bone marrow jumping in to overdrive. As painful as it is it is also what causes your white count to count to come back up which is quite concern coming onto cold and flu season.

All in all a good day. This also means we are 33.33% done. Being a guy who loves numbers, this is huge to me.

Good thought for the day.... I have said this many times, but the Dr.'s and nurses we have had are nothing short of amazing. These folks put in some long days in a pressurized environment to make other peoples lives better, and I pray for them daily. Also, I know God loves my family because of the people he has surrounded us with. There is no shortage of Angels in our midst. We pray for them daily as well, because the strength of those around us has been our own. We can feel the prayers.

Thanks,
Larry

Tuesday, November 9, 2010

Coming to you live from the cancer infusion center (with new post script addition)

I am updating from the infusion cancer center right now. Please excuse any typos as I am typing on a very,very small keyboard:)

So, yesterday I had labs drawn and then an appt with Dr. V. at the appt I told Dr. V about my heart racing when I lay down at night. I even noticed my heat racing when I wake up at night. I totally thought she would say that's just another chemo side effect, but she didn't say that at all. She was very concerned as to why that would be happening.

I told her I actually noticed it right after my port placement surgery. She though it was plausible that the tube from my port may have been inserted a little to far ventricle in my heart, and when I lay down it was pushing in further and causing my heart to react. She talked to Dr. C ( radiologist that performed my port surgery). He also said it was plausible but not very likely. They had me scheduled to come back to radiology tomorrow morning at 7am to have it checked ....and possibly replaced :(.
( cute little purple port..Remember how I love you? Please don't cause problems!!!)

I asked Dr.v even if it was too far into the ventricle would it be causing permanent damage? She then called Dr. H ( cardiologist ) and he said he wanted to test my heart pattern for a few days. To do that, I need to wear a heart monitor called "King of Hearts".
( When I heard the name of the machine I couldn't help but to immediately start singing
♪ ♫" playing with the queen of hearts, knowing when it really smarts..the joker ain't the only fo-Ooool, who'll do anything for you". ♪) When I finished singing I noticed I was the only one laughing. But it's funny right??? I even changed  the Queen of Hearts to King of Hearts. I'm laughing just thinking about it :)

so they canceled the radiology apt this morning and had me go to cardiology this morning instead. They got me right in and hooked up to the heart monitor ( his majesty ). I was thrilled to have a procedure where I just had some sticky tabs stuck on me attached to a box I clip on my belt. I could do that all day :)

So, right this minute I have already taken my chemo pre meds and have also started the Rituxin (the one that made my throat close off / horrible hives last time I tried to take it). So far, so good. I'm not feeling any side effects from the Rituxin at all. I do feel a little out of it right now...but I'm attributing that to my pre meds
 ( namely the Ativan and Benedryl). If I continue to tolerate this well, there's a good possibly I will go home tonight and not be admitted to the hospital.
((( fingers crossed ))

Good Thought:
Yesterday at my apt with Dr V, her nurse just commented how fast my hair had grown back. I just played along. " Oh yea, it's really grown fast). Another nurse I see all the time told me the same thing and I just kept playing along " Yes. Isn't it just amazing". LoL
Then one of them said " I'm just so shocked you didn't lose any hair. I told them it was not my hair and they were shocked! She said she sees wigs all the time and can always point them out, but that mine looked so real. She was shocked she couldn't tell. See, I told you I would rock it!!. :)

Post Script Addition:
We just got home from the hospital a couple of hours ago.  Right after I posted the above my nurse came over and adjusted my Rituxin to go in faster since I was doing so good.  Lar said he noticed after that my face got a little flushed.  A little while later my nurse came back and adjusted in up again.  Within 5 minutes of that last adjustment my throat closed off again and I couldn't swallow or breathe very well.  And again, my face stomach and back were covered in hives.  Dr. V came out and she did not seem too happy since she had  requested that I stay on a very slow drip to avoid reaction.  She then said she was admitting me to the hospital for the night to have the rest of the infusion.  But the oncology nurse said they could do the slow drip in the infusion center and still get the entire Rituxin treatment done.  I was so glad because I wanted to come home tonight.  Dr. V said I could stay there and finish it up, but it needed to be administered very, very slow.
 They shut the infusion down and gave me some IV meds.  Within 45 minutes my throat was better and the hives were pretty much gone.
  Then they restarted the infusion on the slowest drip and I went to sleep.  When I woke up, I looked up and the bag of Rituxin was EMPTY!!  It worked.  I was home by dinnertime.
  Tomorrow I will go back into the infusion center at 8am to have the rest of my Rituxin and then the CHOP chemo.  It will be another long day.  I'm pretty wiped out tonight, but I feel OK and ....I GOT TO COME HOME..WOOHOO!!!!!

Sunday, November 7, 2010

Is she wearing a wig???

I'm Not as lucky as the random person I GOOGLED that only lost some of his hair.  But the good news is...

...it really doesn't matter..thanks to my cute wig  (Big thanks again to Joni!!!!!!!!!!!!!!!)

So here's how the last few days have gone:

Day 16:  Every time I touched my hair more and more would fall out.  You still could not really tell by looking, but I knew the inevitable was coming.  I went to a baby shower and asked my friend (who also happens to be a hair stylist) if she could come over and help get my wig ready.

Day 17:  I decided at this point, I needed to just buzz my hair off.  It was very obvious it had no intention of sticking around.  When my friend got to my house, I asked her if she would shave it for me.  We decided to shave it with a #2 attachment.  After that, I tried on my wig and she thinned it out in a couple of spots and voila...it was ready to go.

Day 18:  (Saturday) Larry went in to work in the morning.  I got up to get ready. Even though my head was  shaved with a #2 attachment, my hair was still falling out everywhere.  I was just over it by this point.  I was tired of the "process" of loosing my hair.  It seemed to get harder and harder emotionally to deal with.  So when Lar got home at noon, I asked him to just literally shave it off.  I just want to be done with this part.  It's one of those things that when you know it's going to happen, I just wanted it to happen and be done.  So....now it's done.

I went to Lauren's cheer competition Friday night just wearing my wig.  (Well....not just wearing my wig.:)  At first it did sort of feel like that though because you just wonder if everyone is looking at you wondering "Is she wearing a wig???"  But nobody really looked twice.  I'm truly am so glad to be able to go out and feel like myself as much as possible.

GOOD THOUGHT:
You should just see how much time this whole "shaved head / wig wearing" has saved me on my getting ready time.  I think I may finally be able to beat Lar in the "getting ready to go" category.  I now know how easy it is for guys to get ready.  All those times he had to wait for me to get ready to go somewhere....Look at me now!!!  10 minutes start to finish!  (I'm waiting for my trophy) ;)

Thursday, November 4, 2010

Hair today.....gone tomorrow





Hair Watch 2010:
  I mentioned in my last post that I had not lost my hair as of yet.  Well the next day....day 13.... I noticed when I combed my hair a lot of hair was falling out.  I had to hurry and GOOGLE this topic (hair falling out on r-chop chemo) because I wanted to know what to expect.  I actually found someone who said their hair was really thick to begin with, so they only lost about 50% of their hair.  It fell out pretty evenly and they were never completely bald.   I also found out from others who posted about their experience, that hair will gradually fall out over a week or so.
   So....... now what???  I'm trying to decided if it's time to just shave my head (that sounds so weird as I'm typing it...am I really going to shave my head?).  If I do, I can just start wearing my super cute wig, and all my super cute hats.  OR.....do I wait and see if I (starting off with really thick hair) will just lose a portion of my hair.
  On day 13 when I noticed my hair was starting to fall out I was very ticked that day.  I wasn't sure how I was going to feel, knowing that would be a very "cancer" thing to have happen.  I thought I would be sad (which I was at first) but then I was just ticked.  I think I felt mad because the actual cancer I have has not made me feel sick.  I feel like a pretty healthy person.  But the tests and medicines and side effects and all of that have made me feel sick.  But then my hair falling out on top of that I think tipped the fairness scale way to the other side.  I got through day 13 and by day 14 I think I just started out with acceptance.  I should not complain about a side effect that comes from a medicine that happens to be in the process of saving my life.  A life I am so very thankful to have.  So by today, day 15, I'm OK with the fact I'm going to most likely lose my hair (unless I end up like that super lucky random internet person I GOOGLED).
  So back to my original question.  What do I do now?  Buzz ? No Buzz?  Wait??  Just go for it??
I'm going to give it another day or so.  So far, you can't really tell by looking that my hair is falling out, but as soon as you can, that decision will be 100% easier to make!    Bzzzzzzzzzzzzzzzz    

Monday, November 1, 2010

Running marathons in my sleep

We had a wonderful weekend full of all kinds of Halloween festivities.  I felt great all weekend.  I'm thinking this week will be a good week, and then I'll start the process over.

For Halloween this year, Lauren and Hope were both Bumblebee's and Josh was an Army man. They looked awesome!  I originally thought I would be missing out on / not feeling good for the holidays this year.  But I was able to schedule each treatment early enough, that I should be feeling good for each holiday.  So by the end of the year, I will have 4 of my 6 chemo treatments done and over with.  YAY!

As far as side effects go, I'm pretty much done taking any meds on a daily basis (with the exception of Allpurinol which is to help my kidneys flush the cancer out).  I occasionally will take some Tylenol, but other than that I'm pill free.  My stomach is totally back to normal.  I have started to notice some numbness is my finger tips - kind of like when you come in out of the cold and your hands start to warm up, but your finger tips are a little numb..it feels like that.  And I've had some problems with my heart racing when I lay down at night.  In fact, the other night I went to bed at 9:30pm and fell right to sleep.  I remember having dreams and feeling very restless.  I was just tossing and turning and my heart was racing.  At one point I remember flopping over and hitting someone right in the head with my elbow  (sorry Lar :).  After what felt like 12 hours of restless frantic sleep, I looked over at the clock and it was 12:15am.  I know some of the chemo meds will cause all kinds of weird side effects, and heart racing can be one of them.  I'm going to ask Dr. V next week when I go in for my next chemo if there's something that will help with that, because I wonder if that is part of why I haven't been sleeping so great.  I've been running marathons in my sleep...or at least my heart thinks so!:)
  Speaking of Dr. V - she called on Friday and said my white blood cell count was back up.  So basically that means my immune system is functioning at a normal level.  I can be out and resume "normal" activities with some caution.  Yay!

She also gave me some info about my next treatment.  It will be like so:

Monday  11/8  Appt with Dr. V and labs
Tuesday 11/9  Rituxin  (scheduled for 12 hrs, will admit me to hospital if not done in 12 hrs)
Wednesday 11/10  Finish the Rituxin 
Thursday 11/11  CHOP Chemo treatment 


And if I stay on schedule, I will be feeling better by the 18th which will be wonderful since it's my little Hope's 3rd birthday on November 19th.
Dr. V was very adamant that we get the Rituxin to work this time.  That is why she scheduled it for a 12 hour infusion.  I am going to take some meds before I get there, plus some more before they start the infusion so hopefully I won't have any bad reactions this time.  She said it's a very important part of the treatment, so I'm going to be on my best behavior, and try to just take my medicine like a good girl! :)

HAIR WATCH 2010
So far, I have not lost my hair.  I'm so glad I cut it super short instead of just buzzing it right off.  I'm on "hair watch" because everything I've read says you lose your hair around days 10-14, and I'm day 12.  I'm physically ready with lots of cute hats and a wig, but I think emotionally that will be a surreal day.  There's no denying you have cancer when you're rockin a bald look.  But do not worry...I plan on rockin that look like no other! :)

Thursday, October 28, 2010

I'm Baaaaack

I've turned the corner...HOORAY!  
Tuesday afternoon I still felt pretty crummy.  I called my doctor because I was just so sick of being sick.  She called me in a couple of prescriptions to try (one was Prilosec for my stomach and the other was Decadron steroid for the achiness).  I came home and took both pills.  I don't know if it was a combination of that, or just timing...but Tuesday night I started feeling better.

Wednesday I woke up with a slight headache, took some Tylenol, and then felt great all day.  I felt like myself more than I have in weeks and weeks.  I went to see Dr. V yesterday and had some blood work done to see if my white blood cells have come back up.  I should hear back from her today on that, but judging how I've felt, THEY'RE BACK!!! 

The only thing I'm still struggling with is sleep.  I guess being on steroids really messes with your sleep.  So having gone off the high dose of Prednisone I was on, and then being put on a very small dose of Decadron is wreaking havoc on my sleep cycle.  Even taking "sleep aids" is not helping.  Last night I went to bed at 10pm.  I put the book down I had been reading at 12:30am.  I fell asleep until 2:30am and then was up for the day.  Weird thing is...I'm not super tired.  Today I'm going off ALL steroids, so it should be interesting to see if I crash :) 

Well, today while I'm still feeling energetic, I'm going to do  Sam's Club / Walmart day.  I'm looking forward to contributing a little around here.  It's also funny how this kind of day sounds fun.  I've just noticed while I was down, it's the little things I really missed doing. 

my mini list of "little things" I missed doing
1.  Doing Hope's hair
2. playing Wii with josh
3. cleaning (yes I missed doing this)
4. Saturday outings with Lauren  (going to the mall / Pretzelmaker)
5. Date nights with this cute guy I live with
6. mostly just interacting with my kids day to day

Here's what I've figured out.  I think that during this "chemo" process I will have a week or so of feeling horrible, and then a couple of weeks of feeling good.  I'm hoping that is how things go.  I'm going to take it one treatment at a time, but hope for the best.  I know I still have to be careful (immune system wise).  Dr. V said if I get an infection at all I would have to be admitted to the hospital.  Unfortunately, THAT does not fit into my schedule :)   But with ((fingers crossed))  I'm going to live my life as much as possible while I'm feeling good, and take time off to be sick when I'm sick...and get through this chemo stuff.

Happy Halloween this weekend. Don't forget to check all the chocolate your kids bring home in their bag (and by that I mean take a bite)!  Mmmmmmm 

Tuesday, October 26, 2010

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.

Thursday, October 21, 2010

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!  

Monday, October 18, 2010

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

Sunday, October 17, 2010

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.