Day -4 and a Pain in the Neck

Day -4

I woke up this morning with a bad headache.  I've also had a pain in the back of my neck for a couple of weeks.  This morning at 4am I woke up and worried that the cancer was back and that is what was causing the headache / pain  (you know how unreasonable things are in the middle of the night?)
It is completely unreasonable that my cancer is back since I'm still right in the middle of chemotherapy, and I have a PET scan showing complete remission.  But for some reason, I think it will be a while before every ache and pain I feel will send my thoughts to "worse case scenario" and I will have to talk myself back to reason. 
  I think when you've had something (like cancer) or some other form of illness, or trial for that matter, it's completely natural to have fear.  But here's what I know:

"Faith and Fear Cannot Coexist.
One gives way to the other."
So my personal goal as I continue to go through this hard time in my life is to Choose faith! 
Faith that my Heavenly Father is watching over me, and I will be OK no matter what. 

So, this morning I had 2 appt's at Huntsman.  The first was a history and physical, and the second was a BMT consult.  Both appointments ended up being a little redundant.  They were both basically going over things that had already been discussed in previous appointments.  But what I did learn is how careful they are to make sure I know exactly what lies ahead for me in the process.  And I think I do.  I know it's going to be a hard couple of weeks.  But I also know there is a lot a person can endure physically, and I have the end goal in sight. 
    A month or so ago I came across a story as I prepared a lesson for the Young Women in my ward.  I'm so glad I read it because it really helps strengthen me.  This is the story:  

There was a group of women in a Bible study on the book of Malachi. As they were studying chapter three, they came across verse three which says: "He will sit as a refiner and purifier of silver." (Malachi 3:3) This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study. That week this woman called up a silver smith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silver smith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot--then she thought again about the verse, that he sits as a refiner and purifier of silver.
She asked the silver smith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left even a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silver smith, "How do you know when the silver is fully refined?"
He smiled at her and answered, "Oh, that's easy--when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you.
Author unknown

GOOD THOUGHT:
When I asked my oncology nurse about the "pain in my neck" she confirmed that it would be highly unlikely that the cancer is back.  She said I had probably just slept wrong or kinked it somehow.  So my mom called her massage therapist and I have an appointment tomorrow morning.  I'm sooooo looking forward to that! :)

I love this talk about Faith and Fear

Day -5 and Treasures

Today is called ....Day -5

Today is 4 days from my next chemo treatment, and chemo day is called day zero.  Whenever you deal in "transplant" terms, all the days are numbered by what you will do that day.  Today I got my schedule for the rest of the month and I will be doing "medical"  things up until day +15 which will be Feb 4th or 5th.  So I'm going to try to blog what happens each day.  I have 2 reasons for doing this.
#1  So I can look back and see what I did when
#2 So someone else going through something like this will know what to expect.

I have read so many blogs of people going  through something very similar to what I'm going through.  It has helped me so much to be able to see how things went for them, and also to get advice from them.

So.....day -5. 

My mom and I went to Huntsman at 8:30 this morning.  I first had a chest x-ray (easy), and then I had Labs (not easy).  I expected they would just use my port to draw all the labs.  But when I got back to start the draw, the RN told me 2 of the vials needed to be drawn from my arm (there were appx 20 vials total), and the rest could be drawn from my port.  So right there I knew...2 pokes.  After she drew from my port, she poked my arm and filled one vial and then....it stopped.  So, that meant she had to try my other arm (3rd poke).   After labs we went to another room to wait for an EKG (super easy).  But while we waiting the nurse came in and said the lab needed to draw 2 more vials (4th poke)  REALLY??  I'm not really afraid of needles and being poked (I've had worse than that, trust me), but I hate when I start to feel like a pin cushion.   This was the end of day -6. 

  We then called my Grandparents to meet us at one of my fav spots downtown on 7th and 4th for lunch.

You have never had Utah fry sauce 'til you've had Hires fry sauce.  Right Utahns????
While we ate lunch my Grandpa handed us a big manila envelope.  They had been going through some old papers, and had some stuff for my mom.  What was inside was nothing short of absolute TREASURES.

It was full of letters my Great-Grandpa Bill had written to my Great-Grandma Mary while he was on his mission.   Here's why I think these are such treasures:

My brothers and I were very, very close to my Grandma Mary.  We spent a lot of time with her and my Grandpa Bill.  They had a tiny house in South Salt Lake off of 33rd South next to the Jordan River.  They had horses, a barn and lots of property.  They had a huge pear tree, a huge evergreen tree, and a tons of places to roam and explore.  I have wonderful memories of being at their house for holidays or just for regular days.  In the summer we would have bon fires in an old wheel barrow and roast marshmallows.  And in the winter we would make snow forts. 
  It was always so apparent to us the love and respect my grandparents had for one another.  My Grandpa Bill was a very intelligent man that knew the scriptures by heart.  He would sit in "his corner" of the living room in an old wing back chair, and pull the piano bench over as a make shift table and read scriptures and write for hours on end.  You could tell by the twinkle in his eye when he looked at my Grandma the love he had for her.  They were such a good example to us of what a loving marriage looked like.
   When I was a very young girl, my grandpa Bill had surgery.  During this surgery there were some complications, and it triggered Alzheimer's.  He progressed quite rapidly, and forgot a lot of the things / people he knew; although he always knew Mary.  Most of the years I knew him he was very forgetful.  All the time we spent at their house, he never really knew who we were.  He never remembered our names, and mostly just wanted to be left alone.
   Before this,  he was very active in church, and at one point served as the Bishop of his ward.  He knew lots and lots of people.  But when they would stop by, he would just sit in his chair and look away.  He could not remember them at all. 
  I remember people always talking about what amazing man my grandpa Bill was, and what a great memory he had.  He was an eloquent speaker, and was asked to guest speak several times at fire sides and conferences.  But I never knew him this way. 
  It was about 10 years after he was diagnosed with Alzheimer's before he passed away.  Mary took care of him lovingly the entire time.

  So...today, when I opened the first letter, I started to laugh because it turns out..he had a very  funny sense of humor as well.  He was so in love with Mary, and pleaded for her to wait for him while he served his mission.  The few letters I've read show quite a different man than I remember my Grandpa to be, but they are exactly the man I knew he was. 
   In one letter he says to Mary:

"Mary, I don't mind if you go on dates and have fun.  I want you to enjoy yourself.  I just don't want to get a letter like Elder McGee got from his girlfriend that read
'Not to hurt your feelings, but next time you write me please address me as  MRS. '
So please have fun Mary, but don't send me a letter like that".    :)

So funny.  I'm sure you know what I'll be doing the rest of the day!  I can't wait to curl up on the couch with my stack of treasures and get to know my real "Grandpa Bill". 

My New Year Starts in February ♥

Hunstman Cancer Hospital

Bittersweet.  One more treatment down (the sweet part), two more to go (the bitter part).  I guess I really shouldn't complain, because remember....the treatment is working !
   I had treatment last week and had the usual symptoms.  I sort of know what to expect now.  I guess that's what happens.  Today I'm feeling quite a bit better.  I'm was able to get quite a bit done, but still desperately need to get my Christmas decor down.  Does anyone else go through that?  As soon as the New Year is here, I feel like I need to start with a clean house.  I'm not looking forward to taking down all the decorates...especially the awesome tree Derrick put up for me, but I know it's inevitable.  But now I'm on a time schedule because I will be spending the last 2 weeks of January in Utah.
    I will go down next week and have all my pre-tests done (EKG, lung test, labs, etc, etc).  And then I will have my 5th chemo treatment at Huntsman.  After that treatment I will take Neupogen shots twice a day for 4 days (sort of like Neulasta-stimulates the bone marrow and forces it into my blood stream), and then I will have 2-4 days of stem cell harvesting.  Then I will come back home to have one last chemo treatment.  YAHOO!  I can't wait.  I just might have hair by this summer. :)
     I did (obviously) get my bone marrow results back and they show NO SIGN OF CANCER!  As hard as it's been to go through chemo physically and mentally, I'm so thankful to have the cancer gone.  My "New Year" for me will start in February where I will be looking for some new things to add to my "health regime".  Some of them will include some natural approaches to keeping the cancer gone.  I've had lots of wonderful friends with lots of ideas, but I am always looking to try new things.  Let me know of you've heard of anything that is a natural anti-cancer.  I would love to have this cancer stay gone for a long, long time.
   As soon as my last chemo is done (Feb 7th) I will be starting a 2 year Rituxin maintenance plan.  Basically I will have a 6 hour injection once a week for 4 weeks, every 6 months for 2 years.   Confusing??  yep.  Having the Rituxin alone is not a big deal.  Besides being a little time consuming, it does not have the harsh side effects that chemo does.   It is just another precaution in keeping the slow-growing cancer away.
   I know I've made it very clear I'm cancer free...but I probably should make it clear that my cancer (Non-Hodgkin's Lymphoma) is not curable.  It can come back at any time.  BUT>>>>> it can stay gone too.  And that is what I will choose to focus on.  Through faith, prayer and being proactive I truly believe this cancer will stay gone.  But having the clean stem cells in "the freezer section" at Huntsman will be a good back up plan just in case.
   Even though I'm looking forward to going down to Salt Lake and getting past the next phase of my treatment, I'm so sad to leave my kids behind.  Larry will be staying home with them to help them keep their routine (school, etc).  But I hate the idea of being away from my kids.  Although when I look at things on a much bigger scale, this is such a short period of time.  I hope it goes by fast.  I plan on getting lots of loves and kisses before I leave, and twice as many when I get home.

PS:
Have I mentioned lately how wonderful my husband is?  He has not missed one of my appointments / treatments.  He takes care of me always (and that's not always easy).  I'm a lucky girl!

* 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

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.............)

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)

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!  ~♥