Monday, October 31, 2011

It's been way too long

So , I had to do an update.  First off- because it's been way too long.  But second- because I was just realizing how nice it is to have just completed another month, and to continue to be CANCER FREE.  It was just so wonderful this year for Halloween to be present and available to do activities with my kids and to feel great.  One year ago, I had just finished my first chemo treatment.  I had not lost my hair quite yet, but I was feeling pretty yucky.  So this year has been a pretty amazing difference.

I have had a very busy summer.  Lauren had been cheering again, and we're always so busy with that.  Josh had lots of fun activities this summer.  One of them was swimming lessons.  He's already a great swimmer, but these classes were a little more advanced and he really got a lot out of them.  Hope has been busy as well.  She started Preschool this fall.  It's actually Joy School, and there are 4 kids in it.  We rotate houses, and I teach once every 4 weeks.  It's been so good for her to meet some new friends.  She's really funny, everywhere we go, if she's a kid her age, she'll walk right up to them and say "Hi, do you want to be my friend?"  That is exactly how I was as a little girl.  I loved to make new friends.  So, it's so cute to see her be such a little social butterfly as well.

I have had a wonderful opportunity to be a part of an amazing choir.  We have been practicing for 2 months to sing for one night at a Stake Presidents Concert.  We have been working with one of the most talented musicians I have ever known.  I originally wanted to be a part of it for the experience, but I have learned so much about music and performing in a choir, it has been so awesome.  Our concert will be on November 20th.  It is a 100 person choir and a full orchestra.  I'm way excited!

One of the songs we are singing in called "My Song in the Night".  I found this awesome video of the Mormon Tab Choir singing it.  I loved the song before, but after seeing the video, it's hard to sing it without getting a little choked up.   CLICK HERE to watch the video.  

GOOD THOUGHT:
notice the name change of my blog title???  :)  I like it!

Monday, June 20, 2011

Father's Day & A Funny Story

Well, the bad news is I have not been a good blogger lately.  The good news is I've been feeling great and VERY busy.  That's just how summer goes, right?  But I love being busy.  I love shuttling my kids around to their activities.  I love attending summer activities with them.  I just love being present.
   This last Sunday was Father's Day, so I just need to mention how lucky I am.  I have a wonderful husband, that is an amazing father to our kids.  We spoiled him on Sunday!  He got to rest and relax and take a couple little naps, in fact, here he is between a couple of those naps.....


We also made him a yummy dinner.  We had BBQ chicken (and he had beef tenderloin), hasselback potatoes (if you don't know what they are, click HERE for the recipe.  They're super yummy).  We also had buttered corn and salad, and I made some homemade bread.  We then got together with some friends and made dutch oven cobbler for dessert.  We had peach and chocolate cherry.  It was a great day! 

Funny Father's Day Story:  So Larry is on the High Council and goes to speak in a different ward once a month.  He has to take a companion speaker when he goes, and has asked me to in the past.  I have gone once before, but usually I turn him down flat :)  But when he asked me a couple of weeks ago, I figured since it was Father's Day, I would go with him.  Well....then he told me what the topic was..."Exercising Faith During Times of Uncertainty".   Hmmmm wonder what I could really talk about???   
Anyway, I prepared my talk and went with him *happily* and it turned out to be a wonderful experience.  I had a lot of people come up to me after Sacrament to thank me and tell me about their experiences with trials and how they've overcome them.  I thoroughly enjoy talking to others because I believe that is a great way to learn is through others life experiences and how they've overcome times of uncertainty.  And on that note, I wanted to share with you the talk I gave:  






GOOD THOUGHT:

 I'm wig free...finally!   My hair is very short, but that's actually really nice for the summer.  Plus, it's super easy to do!  Also....  I had my first post-chemo CAT scan, and it shows I'm still CANCER FREE.  It's now officially been 6 months.  Woo-hoo!!!!!



Tuesday, May 17, 2011

Imagine the Excitement

Hello there.  Long time, no see!  You've been super busy too?   That's what happens this time of year.  It's good to be busy, but let's get caught up....
   Since my last post (port removal), I've gone in to the oncology center only once.  It was for a Rituxin treatment.  It was my first time going in with out a port, and I was a little nervous having a treatment with only an IV.  But actually, it went just fine.  I left there scheduled to go back the 2nd week of June.  At that time I'm scheduled to have a full CAT scan to make sure the cancer in still gone.  Sort of a "restaging" after treatment.  But my hope is there will be nothing to stage.  No cancer means no staging, right?  Right!
   So, life after treatment:  I was a little worried I would constantly be in fear of the cancer coming back.  And I will be the first to admit, I do try to check for any suspicious lumps now and again, but I just had to make a conscious choice to not dwell on it.  I feel it would be a disservice to everything I have gone through to get to this point if I just sat around and worried about it coming back all the time.  So I just don't.
   About 3 months out of treatment I started having a lot of joint / muscle pain.  Mostly after sitting for a while or when I first got up in the morning.  It continued to get worse and worse.  I mentioned it to Dr. V and she didn't seemed concerned, but said I could check with my family practice doctor if I wanted to.
   At about the point I started to feel 93 years old (and probably looked it-all hunched over and moving super slow) I decided to check in with Dr. Gao (family practice) and get her input.
   So I haven't seen Dr. G since before my treatment started.  When she walked into the room, she came right over to me and said  "Oh my gosh, it's so good to see you.  I've been copied and updated on everything you've been going through and I just could not believe all the procedures and tests and all you've been through".  She came up and gave me a big hug.  It threw me off a little because I was not used to this from a medical person; it felt more like a friend I hadn't seen in a while.  But how nice is that?
  Anyway,  I talked to her about the pain, and she said it will take a little while for your body to heal because we "poisoned you on purpose".  And because of that we had to kill some of the good cells in your body and some of them take a while to heal and be replaced.  So having some nerve / muscle damage is normal.
I think just hearing that made me feel a little more patient with giving my body time to heal.  I have been so fortunate to have very little prolonged damage.  Any side effects I had during chemo are gone.  And even the pain at this point is almost completely gone.  I've been walking on my treadmill and even started a little jogging just to help rebuild some strength.  Today I feel so close to "back to normal"...just in time for summer! Woo-Hoo.
  Speaking of summer...... Here's what we're looking forward to around here.....
Lauren is in cheerleading, so that is a big commitment.  Lots of practices this summer!  She loves it, and we love it!  It keeps us busy!   Josh has a father/son campout and then Scout camp coming up.  He's really looking forward to that.  We have some friends coming to visit us, and we're planning on getting out to see some friends and family as well.  I love summer.  I love being busy.  And I love having my kids home.  So you can only imagine the excitement that the end of May has in store for us!  I can't wait!  Happy Summer, Friends!  ♥
   
 

Sunday, April 3, 2011

an imPORTant day

Guess what guys????......  I'm PORT FREE!!!!

Last Tuesday I went back to the radiology department at St. Mary's to have my "purple heart" removed.  It was a little bitter-sweet for me (does that sound weird??)  It was sweet for obvious reasons.  Mostly because that is one more thing that is "cancer related" that I can put behind me.  But it was bitter because I can't imagine having all of the blood tests / chemo / antibiotic injections / etc.  without having a port.  I was so scared to have a port to begin with, but then it ended up being so nice to have throughout the last few months.  Will I miss it though??? Heck no!

The procedure to have it removed was basically the same as having it put in.  It was done in a surgery room, and I was given the same conscience sedation.  But the overall procedure only took about 25 minutes as opposed to the 2 hour procedure to put it in.

Right before I went back to the surgery room, the radiologist came out to talk to me and see if I had any questions.  He also asked me if I would like to keep the port after it was removed.  My first thought was..."Oh gross!  NO I don't want it".  But then I thought how awesome my kids would think it was to see it. So I said yes,  I would like to have it.

After the procedure the nurse handed me a little plastic cup with a cute little purple port inside. I took it home, and my kids did think it was cool to see exactly what the port looked like.  When a friend of ours came over he mentioned how he would not want to keep something like that because of all the bad things it represented. All the poison that has passed through it.  And that is all true.  If you have a port, it means you probably have cancer.  It means you probably have had to go through some pretty rough things physically and emotionally.
But to me, it represents good things.  It represents advancement in medical equipment.  I feel very fortunate to have gone through chemo and not had to have all my veins destroyed.  It also represents life.  Because on the day I had that port put in I had stage 4 cancer that had turned aggressive and spread to part of the bone in my spine.   The day I had it removed I was cancer free and in remission.  I have my life back.  To me, my port represents good things.  Plus, as I've said before.... it's super cute!!!

So the last thing I have that is "cancer related" is my wig.  Once I have enough hair to feel like I can be done with my wig, is the day I will feel like I can move on.  Even though I will still be going to the cancer center, and I will still have an oncologist (or 3), I want to move on from this time in my life.  I am so fortunate to have my life, I want to be able to focus on the wonderful things in my life.
The plan for now is for me to go in every other month and have a Rituxin treatment.  I've found the main side effect of these treatments is that I'm a little tired the day of the treatment, and that's pretty much it. I'm back to normal by the next day.

I'm going to continue to update this blog.  It started out as my "cancer blog" to journal everything I was going through as I started chemotherapy.  It's nice to be able to look back a couple of months and read.  There are already things I don't remember the details of, so it's nice to have them in writing.

It's also nice to be able to look back and see what I've been through so I can remember to be so thankful for where I'm at now.   I want to continue to update with things going on in my life, because as I've said before....
It's a GOOD life!!
    

Saturday, March 19, 2011

Happiness is Contagious.... pass it on





SO, as I said in my last post; When I lest my last treatment, Dr. V gave me orders to schedule for labs and Rituxin in one month.  So I scheduled them, and then left thinking I was done until the following month.
  I had follow up appointments in Utah, which worked out great since it was my kids SPRING BREAK.
I decided to take my kids to Utah for a little mini vaca since they would be off for the week.  We were able to go to Disney on ice at the Energy Solutions Center.  My mom works for Coca-Cola, so we are able to go every year and sit in the Coke suite.  Last year when we went, Hope watched the show off and on, but mostly she walked around the suite and played.  This year, she sat in a chair, and did not move the entire time.  She absolutely loved it.  I had to bring her treats to her.
  We also went to a tubing resort in Heber City called Soldier Hollow.  It was so much fun.  You sat on a big tube and a pull line pulled you up the mountain, and then you could slide down in big groups.  The big kids all ran off on their own and had such a fun time.  Hope jumped on her own little tube.  I was a little worried about her on the pull line all by herself.  I was up in front of her and all I could hear is her yelling "woo-hoo" the whole way up.  She loved it!  We also went ice-skating at the Olympic speed skating oval in Kearns.  Lauren and her cousin Jake just took off...they said they were naturals.  Josh and his cousins Jared and Hailee were using walkers that help you stay up on the ice...and they also took right off.  I held on to Hope and skated a little with her.  She was disappointed she could not skate as good as Minnie Mouse could.  She only lasted about 10 minutes, and then wanted her skates off.  She did sneak back on the ice with her tennis shoes and found she could do a lot more spins that way!
    Anyway....some medical stuff....  On my drive down to Utah I got a phone call from the scheduler at Dr. V's office.  She told me I was scheduled to come in for a Rituxin infusion on Monday, and then a follow up appointment with Dr. V on the 24th.  I explained to her that I was on my way to Utah and would not be there on Monday, so we scheduled the appt for that Friday.  I was surprised since the last I heard I would not have anything with Dr. V until the following month.
   And then Dr. Glenn (my Utah oncologist) told me my white counts could be having a hard time coming back up because of the bone marrow harvesting, but they should be coming back up on their own.  She said if they don't come back up, she would have another bone marrow biopsy done to make sure they're not missing something.  She also said something that made me very happy!!!
She said:

"YOU'RE DONE WITH YOUR R-CHop TREATMENTS"


She said that last treatment would not necessarily "hurt" me, but it wouldn't necessarily "help" me either.  Especially since it had been about 7 weeks since my last treatment.  I really figured I was done, But it was just so good to hear and have that confirmed!!  Hooray!

So yesterday I went in for my Rituxin infusion.  My ONC nurse asked if I would like a CBC done and I said "of course".  I opted to not have the Neupogen shots to boost my white count, so I was curious to see if my body was doing it's job and rebuilding on it's own.....and it was!
   My white count is up to 3.7 (it showed the normal range starting at 4.0, so that's pretty darn close to low-normal) and my ANC is up to 2100  (that's 1000 higher than last week).  So my numbers are coming up!  GOOD JOB JEN'S BONE MARROW!!!  I'm so proud when my organs do what they're supposed to do! :)

GOOD THOUGHT:
I feel really good.  I'm starting to really feel like myself.  I'm able to do most of the things I did before treatment.  Like I said before, my hair is slowly but surely growing back.   There was some talk of the chemo possibly putting me into early menopause, but that did not happen (which is a good thing).  I'm feeling a lot of the side effects of chemo totally wearing off.  Although I still have a couple of minor effects, and the Rituxin has some mild side effects.  But seriously, I feel so blessed.
  Over the last 5 or so months, something inside of me has changed.  I look at things differently, in a good way.  I think I always had a positive outlook, but now I make a conscience effort to have more appreciation for even the little things.  Starting with life itself.   Every day when I wake up I think how thankful I am for life. I now know how fragile life is.  I also am trying to look for the positive in all situations.  Because, trust me, if you can find positives in cancer, chemo, spinal taps, surgeries etc..then you can find positive in ANY situation.    And it's so much better to focus on the positive.  Happiness is contagious!  pass it on  


(That last part may or may not have sounded a lot like a Skittles commercial)
 

Tuesday, March 8, 2011

I think I've done enough

So, Friday I was on my way to to Cancer Center to have my labs drawn and see Dr. V.  Half way there my Engine light came on and it said my Engine was overheating.  So I pulled over and called Lar.  He had my car towed to the dealer and we found out the water pump had gone out.  I just thought to myself  in a sarcastic voice.. "Yay! One more thing to deal with!"
   Well, I thought if I didn't get my labs done, then I would not be able to have the chemo on Monday.  So I called the nurse and she said I could have the labs done on Monday morning, and then Dr. V would just come out and see my in infusion.
  So Monday I got to the infusion clinic mentally prepared to have my last chemo treatment.  The nurse came over and drew my labs.  20 minutes later they came back showing my white counts had dropped back down.
My white count was down to 2.5 and my ANC was down to 1100.  So Dr. V came out and said she was going to call Dr. Glenn at Huntsman to get her opinion, but she felt like we would not be able to finish that last round of chemo.  It has been 7 weeks since my last chemo, and after so long it would almost be like starting over.
  For some reason, I feel really good about this.  I feel like I've done enough treatments, and knowing that I will continue to do the Rituxin maintenance makes me feel reassured as well.
  Dr. V mentioned having me come in for more Neupogen shots this week, but I told her I would like to wait and let my body recover on it's own.  The Neupogen shots are boosting my numbers up (like they were last week), but then they drop back down.  They're not as low as they originally were, so that's a good sign.  I just want to let my body work on it's own and let it rebuild those counts slowly.
  She did have me do a bunch of new labs testing for a bunch of different viruses to see if that is what's causing my counts to stay low.  She also mentioned possible doing another bone marrow biopsy to rule out any cancer possibly being in my bone marrow  (which would be very unlikely since I just had a bone marrow biopsy in December and it was cancer free).
  So yesterday I just had another round of Rituxin.  And today I feel so good.  I'm going to start exercising again.  I've been waiting until I was done with treatment because I just felt so weak.  But today, I'm dusting off the treadmill and going to start getting ready for a 5k in May.
     When I left Dr. V's office yesterday she had me schedule my next Rituxin treatment and labs in one month.  So the next thing I have coming up is a small surgery the end of March to have my port removed.  YAY!

GOOD THOUGHT:

I'm going to miss this little friend trying on my wig every chance she gets.   But hopefully I'll be putting that wig away soon because......


a
I have hair.  Not a lot of hair yet.  But I think by late Spring, I could be sporting a short hair style and be wig free.
(Don't you love the little friend I have in my lap??  Somehow, she's always by my side..or close by!) 
Dear Cancer Center waiting room,
I won't be seeing quite as much.  I'm not really sad about that! 

Wednesday, March 2, 2011

Icing on the Cake









SO, I went in on Monday to have some labs done and see if my white count had come back up. Here's the difference a week makes (a week on Neupogen that is)...

Last week my white blood cell count was at: 1.7 (normal range is 4.3-10.8)
Last week my ANC was 215  (normal range is 1500-8000)

This week my white blood cell count was at 10.5  and my ANC was at 7500
So I'm totally back in the normal range.  Which is good....except for the phone call I got Monday afternoon from Dr. V herself.  She said:

"Now that your counts are back up we could go ahead and do the last Chop treatment.  There's no guarantee it will do anything at this point..but, we would hate to look back in 3 years and think we wish we would've completed that last treatment."

But she also said it was my choice.  And I went back and forth because really, I want to be done.  I think I've said that once or twice before.  :)

And then Monday night I got another phone call from Dr. Fan herself and she said:

"I think you do need to do your last treatment.  You already have the cake (my clear CAT scan), now this last treatment will be the icing on the cake."

Isn't it awesome these doctors call me??  I am so fortunate to have such wonderful people on my "cancer team".

So, after some thought and prayer...I decided I will have my last chemo treatment.  I will go in this next Monday for it.  I will plan to be sick for a week, and then I'll be moving on with my life.  It's a great life, and I'm so thankful for it!

GOOD THOUGHT:
Remember John from Idaho??  He was able to collect enough stem cells to have a transplant.  He is recovering, and after a rough process, he is doing well.  It's amazing how far they have come with cancer treatments, and as hard as they can be to endure physically, when you see a life saved...it's so worth it in the end.  Yay John!

Monday, February 28, 2011

Roller Coaster Week

(  This has been Larry and I these last few weeks :)

So, this last week in to see Dr. V on Monday.  I was scheduled to have labs and then on Tuesday I was going yo have my final chemo...FINALLY!  But when my labs came back my white blood cell count had dropped drastically.  The week before it had gone down to 1000  (remember, I'm trying to get it above 1500 before they will even do the chemo).  Well, I had been coming in for Neupogen shots, and I had been feeling really good the previous week, so I actually expected my counts to have come back up, so when Dr. V looked at the labs results and said my count had actually gone down to 215 I was shocked.  That put me in a category of not only being able to get the chemo, but also in a very high category for getting an infection.
So, instead of coming back in for chemo the next day, she had me come in for just the Rituxin.  Then she set me up to come in every day for a Neupogen shot in hopes of getting my white count to bounce back up.  She mentioned if it did not come back up this last week, she would have to schedule another bone marrow biopsy to see what was going on.  What is going on??
Do you see why it's been a roller coaster week???
On one hand I'm feeling pretty good, and on the other hand my white count in soooo low.  Plus, I'm not sure if I'm going to get that last chemo treatment.  Which....
on one hand I'm super glad to think I might be done, and the other I don't want to miss any treatments that might ensure the cancer staying gone.
AHHHHHHHHHHHHH  (which is what I say when I ride a roller coaster!)

Also, Dr. V said she wanted to call Dr. Glenn (my Utah doctor) to get her input on why my counts would be so low, but then found out Dr. Glenn was out of town last week.
SO I decided to email Dr. Alice Fan (My Stanford Oncologist).  I just really wanted to get her input on the situation.  I explained everything to her and this was her email reply:


Dear Jen, 
Thank you for your email update. Sounds like you've been through a lot!  Infections and delays due to counts are common, so it is not unusual or worrisome to me. I'm very happy to hear about your clear CT results.   I would like to call Dr. Virgilio tomorrow when I'm in clinic to touch base with her, and then after I talk to her, I'll give you a call.  Sound ok? 

All the best, 
Alice

(Dr. V was out of the office on Friday, so she is calling me today..Monday)

Dr. Fan is an amazing doctor, and I feel so lucky that she is willing to look into what's going on with me.  She is the one that set up my course of treatment.   That being said, I really hope she calls Dr. V today and they decide that I don't need the last round of chemo, and I can just start my Rituxin maintenance.
I should be hearing some time today, and the thing is...
I'm ready to get off this roller coaster!!!!!



GOOD THOUGHT:
I'm starting to rebuild.  My strength is coming back slowly.  I'm starting to feel like my old self.  The "chemo side effects" are starting to wear off.  I'm so excited to keep moving forward!  




Thursday, February 17, 2011

Going through it together

This last week has gone a little better.  I saw Dr. V on Monday and thought I would be having chemo that day.  But when my labs came back, she delayed it again.  My white blood cell count was really low.  There was another part of my blood count that has to be over 1500 for them to even do chemo.  Last week my count was at 1100.  And then this week it was down to 1000.  Even though Dr. V was no positive I was fighting a blood infection, she figured there was some type of infection going on, and my body was having a hard time getting rid of it with such low counts.  So Monday she started me on Neupogen shots every day.  Oh, the Neupogen shots.  Yes, they're the same shots that they gave me right before I harvested stem cells.  Remember, the ones that made me so, so sick??   So, I was expecting to feel really sick this week from the shots.  But surprisingly, I've felt OK.  I think the dose was much, much smaller.
  She also was concerned I could be having problems with my gall bladder or appendix.  So she sent me to have a CAT scan and chest X-ray and then scheduled me with a surgeon to go over those results.  Monday afternoon I saw Dr. M (Surgeon) and he said everything on the CAT scan looked totally fine.  He could see where the cancer used to be, but yes...it is still gone.  That's always good to hear!

   I had a follow up appt with Dr. V yesterday and this is what she said:


" You only need one more Neupogen shot, and then one more dose of Vancomycin (IV antibiotic) and 3 more doses of Levaquin (oral antibiotic) and then we'll schedule to have chemo next Tuesday.  Then after chemo we'll watch for your blood counts to come back up, and once they do we'll have your port removed.  You will come back every 3 weeks for 2 more cycles, but that will be for Rituxin only".


So see, I really am getting close to being done.

The last 10 days I have been taking an IV antibiotic.  The first couple of doses we had a Home Health nurse here to show us how to do it.  But since then, I have had my own private nurse (he's cute and nice).  Larry has always been in charge of my med's.  He just added this one to the list and became an IV expert.  Even though there were no needle pokes, it's still a lot to remember hooking everything up, and he's been a champ!  But I think he's super glad to have that part over too!

My oldest daughter Lauren has been so helpful as well.  She wants to be a Pediatrician when she grows up, and she loves to be right involved in anything medical.  So me having this done at home has been a dream come true for her.  She always wants to be right there and check things out.  I also got approval for her to be my "chemo buddy" for my last treatment.

My son Josh has been so sweet through all this.  He's always reminding me, "Mom, we're almost done."
I think it's so sweet how he uses the word "we're".  I know I'm the one that had cancer, but my WHOLE FAMILY (immediate and extended) have gone through this together.

GOOD THOUGHT:
My hair is growing back..hooray!

Saturday, February 12, 2011

Delayed

 SO, I'm on a very strong antibiotic right now, IV style.  It's called Vancomycin.  It's not bad to take..no major  side effects.  I started it Monday night at the infusion center.  And then I went back to the infusion center Tuesday morning for another dose.  Tuesday night a Home Health nurse came to our house and showed us how to hook up the antibiotic at home.  It's super easy  (no needle pokes thanks to my port).
  This morning I originally scheduled to go in for my 6th and final chemo treatment.  But  my appointment  was changed for me to come in earlier and have my antibiotic treatment, and then see Dr. V .  She told me that she wanted to hold off on my chemo because of the infection, so I will have the chemo on Monday  (Valentine's D♥Y).  Oh well.  This is how it is.  Expect the unexpected.

(I started this post last week.  Today is Saturday.....here's what's new)

    Yesterday (Friday) I woke up feeling sick again.  Low grade fever and just overall feeling yucky.  I called Dr. V and she said my blood cultures came back just fine, so the original culture that showed infection could have just been contamination from when they did the culture.  She thought I could just have a virus...things are going around.  But just in case, she has me taking another oral antibiotic.
   I had 2 more rounds of the IV antibiotic left, and to be honest, I was looking forward to being DONE with that.  And then last night a man knocked on my door and was delivering TWELVE more doses of the IV antibiotic.  I could not believe it.  I called Dr. V to verify she really wanted me to take that many more doses even though my blood cultures came back OK.  She said "Yes.  Just to be safe".
   So....I guess I will continue taking  IV antibiotic until Thursday.  And then this Monday is chemo.  The plan is to have the chemo next week, finish out the antibiotic, and then have my port removed.

GOOD THOUGHT:
I'm on the countdown.  And it can not come soon enough! :)

Tuesday, February 8, 2011

What I should be doing





I am looking out a huge window watching huge snowflakes fall.  I love when it snows.
I should be skiing right now.  I should be putting little purple snow pants on my littlest friend and building an epic snowman right now.  I should be picking up the rug I left on my back porch right now (oops).  I should be brewing some hot cocoa and inviting friends over to play in the snow.  That's what I think I should be doing.
Maybe next snowstorm.

This snowstorm, I'm sick.  I've been sick since Friday.  High fevers, chills, aches, icky feeling.  This is supposed to be my feel good week.  And then this Wednesday was my 6th and final chemo.  I'm in the homestretch.  And I was looking forward to that. But Sunday when I went to the hospital to find out why I was sick, I was told I have a staph infection in my blood.  Not good!  I had lots of cultures drawn and then sent off to the lab.
Yesterday afternoon I came in to see Dr. V and she confirmed that I had an infection in my blood and would need some strong antibiotics through an IV for 10 days.  She said this may, or may not push back my final chemo treatment this Wednesday.  I'm looking out the huge window behind me in the infusion room watching the snow fall, thinking of all the things I should be doing.

Well, what I should be doing is planning a special celebration dinner with my family for Valentine's Day.  Our Halloween, Thanksgiving,  Christmas and New Year's all came and went with a little cancer cloud hovering over them.  But Valentine's Day...that day is supposed to be a huge celebration in our house.  And it will be!
This may be a little set back.  But what I will be doing is focusing on getting better and getting through this last chemo.  I will be planning an awesome Valentine's Day Celebration. ♥  I will be thankful for all the things / people that have blessed my life on a daily basis.  I will go home after this infusion and watch my little girl play in her purple snow pants playing in the snow.  And next snow storm I will be out there with her!

GOOD THOUGHT:
This is a message to Mr. and Mrs. Clark from California.:  You raised such a wonderful daughter.  I am so thankful to have her as my friend.  She continues to make my life easier in sooo many ways.  She is so caring and compassionate; she always seems to know exactly what to do to make things better for me.  I just wanted you to know, you should be so proud of the woman she is.  I'm sure you already knew that!
Love, Jen

Saturday, January 29, 2011

She has a Wonderful Heart

As I've gone through this process the last few weeks, I've been clenching my fists a lot.  My mom pointed it out to me a couple of times.  I guess it's a habit I've started.  When I feel I'm about to have something painful / scary / or hard done, I clench my fists and close my eyes and just picture my 3 beautiful kids.  I picture to myself how thankful I am it is me going through it, and not me standing next to them watching them go through it.  That truly helps get through the rough stuff.  I just can't imagine having to stand by and watch your own children suffer.
   But when I open my eyes, and it's over...I see my mom.  Standing there watching me go through it.  I'm her little girl.  She is standing by watching her little go through it.  And then it makes my heart hurt for her.  This whole thing I know has not been easy for her, but she always tries to make every situation better.  Let me give you a little history to this:

When I was a teenager we lived in San Leandro, California (just across the bay from San Francisco).  If we ever needed to go to San Fran or to the west side of the bay we had to cross a toll bridge.  It would either be the Oakland Bay Bridge or the Dumbarton Bridge.  Once you pay the toll and enter the bridge you have to stop at a light and wait your turn to go on.  So my mom thought of this fun idea.  She said...
" Let's pay the toll for the car behind us too.  And then when we go up and stop we can look back and see their reaction."
  So my brothers and I piled in the backseat so we could watch out the back window.  It was so fun to see their expression and look of surprise and confusion when they toll man would just point up to our car and tell them we had covered their fee.  They must have been surprised because not a lot of people did that.  But it was a game my mom started and we did every once in a while when we crossed a toll bridge. (Today it's $6.00 per car to cross, back then it was still $5.00 to cross----or $10.00 every now and again).
     Then one day she decided we could try another game.  We were at a McDonlad's drive-thru and she said "Let's pay for the persons order behind us".  (Risky little game to play in Utah at McDonalds :),
but we did.  It was so fun to see the look on that moms face when her Happy Meals were coming out for free.  The funny thing is, when we drove away I had such a good feeling inside, ya know, it's always so nice to be surprised with something like that.
      So jump ahead today, we obviously don't do that EVERY time we go through a drive thru, but every now and again I will say to my kids....should we pay for the car behind us??  Our favorite is at Sonic when someone is sitting at the tables waiting for their order and you pay for it for them through the drive thru, because then they have no idea where it came fun.  My kids love it when they see the missionaries there because they're a given....we always buy a little secret  treat to send out to the missionaries.   It's just a way we've paid forward a wonderful game my mom taught me.
 
So another example is yesterday.  We met a man named John in the BMT clinic.  He's gone through chemo once before, and now is working towards getting a bone marrow transplant.  He lives in Idaho, but has been staying in Utah for the last 4 months.  My mom was immediately worried about John.  I'd see her scoot her chair right over next to John so she could talk to him.  Then she told all the nurses "I am John's support person, so if he needs anything let me know".   As my mom was talking to John my nurse came over and told me (with tears in her eyes) how nice it was for my mom to be so kind to John and that John had had a really hard day and was alone.  I think my mom is just in tune to what people need.
   Next thing I know she's opened up the mini fridge and "mixing drinks" for everyone and bringing them around.  She called them "Sunshine Drinks" you could get a "sun setter"  or a "sun shiner"  (I'll post the recipes at the bottom).  Pretty soon I look around and there is a party of patients, supporters and nurses gathered around my bed.  Even John got down from his comfy chair and pulled a folding chair over closer by us while he finished his last blood transfusion. 
   One of the head doctors walked in (he was fairly new to Huntsman) and he said he thought my mom was the lady in charge of the whole place.  She said "Would you like me to make you a drink?".
  So yep, that's my mom.  I've learned a lot from her.  She has a wonderful heart.  And even when her heart is sad, because she's watching her little girl fight cancer, she's still willing to make you a happy drink and try to brighten your day.

This is a pic I hate to put out there, because we all want our pics taken when we look our very best.  But this is what cancer looks like.  This was day one when I slept all day.  I would wake up freezing cold because even though they warm your blood up before they put it back into you, it's still cold.  So this is me sleeping with about 15 warm blankets my mom had put on me to help keep me warm.




And this is John.  On day two I was able to collect over 4 million stem cells, John was only able to collect 300 total.  It was a hard day for John and he has a rough road ahead, so please include John in your prayers.  Heavenly Father will know which John he is---he's the one from Idaho.


Thank you mom and Tom for being such wonderful care takers and helping me get through this process.  Mom, thanks for making it fun when I felt good and making it comfortable when I felt icky.  Thanks for distracting me so I wouldn't miss my family and reminding why I'm doing this all those times I wanted to give up.  And Tom---thanks so much for giving up your favorite spot on the couch, your favorite bed, and your time with your wife so she could be with me, and for always making sure I had everything I needed.
I love you both so much!


mom & Tom




GOOD THOUGHT:

Sunshine Drink Recipes

The Sun Shiner  1/2 c Sprite,  1/2 c orange juice

The Sun Setter  1/2 c Sprite,  1/2 c grape juice

Pour into Styrofoam white cup, fill with hospital ice and top off with a bendy straw!  Voila!

Friday, January 28, 2011

What day are we on? It doesn't matter cuz I'm DONE! :)

Where have you been????

You were wondering, right??  Well, I'm going to tell you where I've been, what I've been doing and every detail about it I can remember.  So, sit back and relax..this may be a long post! :)

So the last time I posted (Monday) I had started my Neupogen shots.  I expected them to be hard...they're the same drug as Neulasta, only a little more intense and shorter lasting.  So I was expected some pretty decent body aches to occur, but I can deal with that.  I was a little concerned Saturday night when Huntsman sent a courier to my mom's house with  a large box FULL of medical supplies (including 6 small vials of neupogen that were to last 2 days-they were sending the rest out later).  So Sunday I wasn't overly surprised when the nurse got to my mom's house and told me she would be giving me 2 (two) shots per day.  Yay me I thought ---not really. 
   So Sunday I got 2 shots of neupogen, and then Monday she had the gall to come back and give me two more.  The nerve! 
     At this point I was definitely feeling achy, but nothing I would call horrible.  Maybe a 6 on the horrific scale.  I was told the only pain meds I could take once I started the neupogen shots was Oxycodone.  Absolutely no Tylenol or Ibuprofen (it somehow messes with the collection process).  So Monday night, as I was feeling a little achy (and brave I might add) decided to take one oxycodone along with my Ambien and get a great nights sleep and get ready for my 3rd day of shots but.....here's where everything changed.

I woke up Tuesday and was so sick, I could not get out of bed.  Along with the pain I had been feeling, I had a migraine headache I was completely nauseous my face felt like there was so much pressure it was about to explode.  I figured I had caught some type of bug, since my white blood cells had dropped so low.  I laid in bed ALL DAY.  My brother Justin and his wife Amy came over to check on me and to  let the home health nurse in (yes, I still had to get my 2 shots that day).  I thought I might have had a reaction to the oxycodone.  See..this is why I stick with Ibuprofen-I know what to expect.
  Anyway, I moaned and groaned through that day hoping I would get a good nights sleep and wake up feeling  better.
   When I woke up Wednesday, I felt worse.  I had tossed and turned all night.  It was so painful to move, and when I coughed I thought actual body parts had come off it hurt so bad. 
So I called the PA at Huntsman and told her what was going on.  She said this.......

(Read with enthusiastic voice)
"Yea, people have different reactions to the neupogen.  They are a lot like flu symptoms, but the good news is it means it's probably working!" 

ummmm.  OK.  But I was laying there feeling like I really, really might just die.  And at times thought I would welcome it, just to get a little relief.  Instead, I picked the phone back up and called the PA back.  I told her I was coming up there.  I knew once they saw me they would know how sick I was and want to immediately make me better. 
   When I got up to Huntsman they checked me in and then asked me to sit in the waiting room.  I told them I was too sick to sit....I needed a bed to lay down  RIGHT NOW!  (It was all I could do to ride in reclined car seat for 40 minutes to get there!)  The receptionist jumped out of his chair to go find me a bed to lay down.  (He could obviously see how sick I was).
   The weird thing is, even when they saw me in person, they did not realize how sick I was.  They had me take stuff for nausea, they hooked me up to fluids and let me recline in their chair for a little.  Then they said to go ahead and go home and to come back and 7am for the apheresis catheter surgery (port used for harvesting).  I told them NO.  I'm not going home this sick.  I needed to stay there are be cared for because this was not normal to be so very sick.  They said....

(Same voice as before)
"Yes, this is normal.  But it's a good sign that you're so miserable because you might be able to start collection tomorrow with your body having such a good reaction.  Oh, and we close at 5 so you do have to go home". 

So I left.  Still sick.  But I was starting to feel like I could try to eat something.  So I told my mom I wanted a cheeseburger from Sonic.  She tried to talk me out of it several times  ( "You really don't want a cheeseburger from Sonic.  There's no way that could sound good!)
But somehow, that's exactly what did sound good.  And when you're nauseous it's always best to eat what sounds good to you because then you'll probably hold it down. 
   When we got home I went to lay down.  I was just so worn out from throwing up all the way home.  And the weird thing is, I only got one bite of that cheese burger down.  So here we are...aalmost caught up.  I'm literally on deaths door.  Let me just add, I've been through a thing or two the last few months, so when I say I was sick, I mean it.  I'm emphasizing this for 2 main reasons:
1) If someone comes across my blog and they're are about to go through this type of thing, I don't want them to be surprised, and
2) for your sympathy!  (mostly this)

So now, Thursday morning.  We got to Huntsman at 7am for labs.   While I was having the labs drawn my mom just kept telling the nurse..."  Can you believe she wanted to stay here for the night, and then can you believe she wanted a Sonic Cheeseburger."  Well, while they were chatting it up like long lost friends from high school, do you know what I was doing??  Throwing up.  oh, and having blood drawn. 

Next I was off the have an x-ray and CT of my face because I think I had convinced them that my face was going to explode  (those came back fine somehow.  They did show some congestion.  They suggested a netty pot.  I was like...you're kidding, right?) 

Then I was off to Radiology to have my apheresis catheter put in.  At first I dreaded this part, but by this point, I COULD NOT WAIT to get under that conscience sedation.  I quickly made friends with the nurse that would be administering them.  I told her to put as much as she needed in my IV so I could go to sleep and get some good , good rest.  She just laughed.  But she must've done it because I woke up 3 minutes later and they were done.  My mom came into recovery and said it took 2 hours (what??) and there was great news.  My labs were back, and  hey would start to harvest that day!

Harvest day, Hooray! 
So, next I go back up to BMT infusion room.  And this was the process:

I laid in a bed (and fell asleep).  While I was asleep a stem cell technician named  T hooked me up to this machine called apheresis machine which would circulate all of the blood in my body about 4 times.  While it was circulating it would spin the blood and separate and extract all the stem cells (which is the red liquid collected in that IV bag).   Do you see how T is smiling in that picture??  She said it was because she saw how sick I was and thought I would be able to collect a lot of stem cells in one day.  Possible meeting my goal of 5 million and then be done...in one day.  I wasn't smiling at this point because I was asleep.

This is what the end of day one looked like:
my very own cute stem cells




Later that night T called from the lab and said we only hit about 3 1/2 million.  But I was fine with going back because I had slept most of that day away, and I was starting to feel a little bit better by this point.

So day 2 of collection (today) I went back up at 7am.  I started collection again, only today I was awake the whole time.  I was able to get to know my nurse better (nurse extraordinaire) and my stem cell technicians were A and A  (we called him Oscar all day, just for fun). 
By, the end of the day I had collected enough stem cells to be done. 
Total stem cell collection for 2 days
bdbdbdbdbdbdbdbbdbdbdb  (drum roll)
8.3 Million
ummm yea.  I hit the goal, and then went a little over cuz that's how I roll!

Those little stem cells are in a nitrogen freezer at about -150 degrees and will be stored indefinitely.  And the truth is....I hope I never need them! 


Here's some pics.  (I've withheld real names for their privacy) This is just a few of the wonderful people that took care of me over the last few weeks.
K.   Driver, Hostess, Cook, Cleaning lady, Care taker, etc.  (also known by me as MOM)

A- the Supervisor, and A the Newbie (he's the one we called Oscar)

E.  Nurse Extraordinaire.  She needs a raise -Stat!


A.  The best MA
(Who were you again?)


GOOD THOUGHT:
My family is driving down tomorrow.
YAY  YAY and HOORAY
I'm so excited to see them!   ~♥

Monday, January 24, 2011

In the FIGHT and Day + 7

So, I would not say I'm a Cher fan particularly,  but have you ever heard something that just resonates with you??  This was one of those songs.  I think anyone who has had to Fight  their way through anything will be able to relate to this.   This week is a fighting week.  I'll be glad when it's over! :) 


Click Here to Listen


Here's to hoping whatever FIGHT you may be in right now, you're kicking butt too!

Friday, January 21, 2011

Day +3

Three days past chemo.  Yay.

I was curious to see what chemo would be like without the Neulasta shot.  I've always associated a lot of the side effects after chemo to the Neulasta shot.  Well, it turns out, I was still miserable  (imagine that).  I haven't had the really bad aches, but I still have been shaky and a little nauseous.  I really think the one of the worst parts is the steroid (Prednisone, the "p" in CHop).  I have to be on that until 5 days after chemo (which will be Sunday).  I'm always so glad when that part is done.
   I will have a home health nurse start coming on Sunday (day +6) to start the neupogen shots.  She will come and give me a shot on Sunday-Wednesday.  And then Thursday I will go back up to Huntsman to start testing to see if I have enough stem cells in my blood stream to harvest.  Best case scenario is they will start to harvest on Thursday of Friday, and I will be done by next weekend.  I am planning on going with best case scenario.  I'm ready to be done with this part. 
   Even though I talk to Lar and the kids every day, I just can't wait to see them.  In some ways this last week has gone by fast, and in other ways being sick just seems to drag on. 
   It has been very nice being able to stay at my mom's house and be taken care of.  And a special thanks to Tom for giving up his iPad all week and letting me take it over :) 
  Thanks for checking in, and thanks again for all the prayers! ~♥

GOOD THOUGHT:
I'm so lucky to have my own healthy stem cells available to harvest.  It will make it so much easier in the future (if I ever do need a transplant) to use my own stem cells.  We have a goal set to harvest:
5 million cells. 
I say...no problem! :) 

Wednesday, January 19, 2011

Chemo Day Round 5

Yesterday was Round 5 chemo day at Huntsman.  My mom and I went up at 8am for Labs and to see Dr. Glenn.  We were not able to see Dr. Glenn because she was held up in a meeting, but that was fine because what I really needed to see her for was to ask her about the pain in my neck.  But, that pain is gone now.  Phew!
   So I went in to the infusion room and started the chemo.  It ended up being the fasted infusion I've ever had.  It was completed in one day, and it only took about 5 hours.  I think this is partly due to the fact that my body is used to the Rituxin now and can tolerate it being infused pretty quickly. 
    I wondered if there would be any major differences at the infusion center in Huntsman as opposed to St. Mary's where I normally go.  The infusion rooms were fairly similar.  Large over sized recliners lined up throughout the room.  They both have one wall  that is all glass looking outside  (the Huntsman's one is over looking the mountains-gorgeous).  But one thing I noticed is the age of the patients.  At St. Mary's I am  usually-by far-the youngest patient there.  Where at Huntsman, there were all ages. 
    Halfway through the day a lady came and sat right next to me.  She had her 2 daughters with her.  She had endometric cancer and had been through chemo several times.  She said at this point her cancer was considered "chronic" and she would be on chemo to control her disease indefinitely. 
    She still works full time and seemed full of energy.  Her daughter says she is a total "type A" go getter personality.  I would definite call her a fighter.  She works as a nurse at BYU University.  It was so nice to chat with her and her daughters.  She was truly full of positive energy, and you can't help but feel that!
    I fell asleep toward the end of my treatment.  And then we came home, had dinner and then I feel asleep again.  I went down to bed at 11pm and slept until 9:30am.   When I woke up I felt pretty good.  I wondered how it would be having chemo without the Neulasta shot right after, and so far it seems like all the achy and pain I get from chemo is from that Neulasta shot.  But even though I feel OK, this week is when my immune system will be at its lowest so I will be finding things to do around the house and staying in.
   I'm going to start working on my digital scrapbooking again and trying to get caught up on that.  It's usually hard to find the time to do that, but this week all I have is time. 
   I will be starting my Neupogen shots on Sunday.  A Home Health nurse will be coming to my house to give them to me, which will save me the 45 min drive to Huntsman every day. 
   Until then, I will just continue to rest and count down the days until this process is over and I'm that much closer to the end!  HOORAY!  

Monday, January 17, 2011

Days - 3,2,1 and a Dream

I'm combining Saturday, Sunday and Monday because I was busy those days, but not with medical "stuff".  Here's what I was busy with:

Saturday morning I had an appointment at Elementz Salon & Spa in Draper for a massage.  I was hoping it would help my neck, but I was also looking forward to doing something relaxing.  I got ready for the massage and the room was so peaceful and the massage table was so comfy.  She had me start by laying on my stomach so she could start on my neck / back.  As I laid there I felt tense and she even at one point asked me to stop clenching my fists and relax (I did not realize I was that tense).  But then it dawned on me, the last few times I've had to lay like that was to prepare to have some type of painful procedure (spinal tap / bone marrow biopsy).  So I had to consciously tell myself to relax.  After that, I did relax and it felt wonderful.  Debra is my moms massage therapist and she did a great job.  If anyone in the valley is in need of a good relaxing massage, you should absolutely try her.  She is in the Elementz Salon & Spa right off of I-15 in Draper.  She's in the corner of the strip mall over by Smith's.  It's so worth it!!  Plus, I think she's running a $50 for one hour special through January.  So, so worth it!!!  
   So now, I feel like a lot of tension in my back and neck are gone.  But I do still have that nagging pain on one side of my neck.  I think tomorrow I will ask Dr. Glenn about getting a CAT scan on my neck.  If for nothing else, just for piece of mind.  
     So then, we went to see a play at Desert Star Playhouse in Murray.  It was called "Back from the Future".  All the plays there are spoofs on other movies, and loosely based on them with a huge dose of "Utah culture" humor thrown in.  It was so funny. 
   And then Sunday, I wanted to go to Sacrament with my mom, but we realized (at 9:45am) that her ward had switched to 9:00am.  So we just went to Relief Society.  It was a great lesson on fasting, and there were lots of ladies there so happy to see my mom.  They all wanted to know if there was anything they could do to help.  They also said as a Relief Society they had fasted for me.  It is so humbling to have so many people care for me and my family.  It makes me so proud to be a part of this church. 
   My little brother and his wife came over last night and made dinner.  It was fun to see them and their 2 little girls.  But it really made me miss my kids.  They absolutely love to come to Utah and see their cousins.  But one thing that has helped me TREMENDOUSLY is one word :    S K Y P E

We set up Skype at my house and at my mom's house.  So if the kids ever need to talk to me, or I need to talk to them...we Skype.  It's made it so the kids can still see me and I can see them.  Last night we were Skyping and I was watching the kids just play and wrestle on the floor (normal stuff, as if I were there), and then Lauren took the laptop into the kitchen and I walked her through making some homemade icing for a cake she baked. 
   We are able to read scriptures as a family, and have family prayer together, all thanks to Skype.  It truly has been a lifesaver being able to be a part of some of our everyday activities, and see each other as opposed to just talking on the phone.  YAY FOR SKYPE!!!

Today has been a relaxing day  (and by that I mean I'm still in my pajamas).
I've been going through some old treasures my mom has from when I was little.  I just might post some old cheer pictures, dance pictures and pics of me when I was Lauren's age.  Man, I thought I was cool!  Wasn't blue eyeshadow and mascara cool?  Oversized sweaters? Acid washed jeans?  No??
I think they were very cool back in the late 80's. 

GOOD THOUGHT:
Today being Martin Luther King Day, I was thinking about "dreams".  My dream at this time is to get through the next month, and then have a fresh start with my health.  To be able to be in control and feel better than ever.  My dream is to look back at this time in my life and realize how much of a learning opportunity this was for me and my family.  My dream is that we will have learned all that we needed to and are better people because of it! 
  

Friday, January 14, 2011

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

Thursday, January 13, 2011

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". 


Monday, January 3, 2011

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!