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. 

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'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!

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 !


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. 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 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.


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


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!

  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!

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. 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!  ~♥