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I just wanted to send a quick update and let you know I was released from the hospital yesterday and able to come back to my mom's house.  I will be here for the week for clinic appointments, and as long as everything is going well, I will be going back to Colorado this weekend (with a brand new immune system!!)

I will post details of the transplant later.  I can definitely say it was the hardest thing I've ever had to do physically..and I'm so glad it's over!  But I'm also glad it was an option for me to have a brand new immune system that is cancer free.  My immune system is like a brand new baby's would be.  Unfortunately, my energy level is also.  :)  Thanks so much for all your prayers!  They were definitely felt!

♪ Next Year ALL our Troubles will be out of sight... ♫

Merry Christmas Eve.  It's been snowing here all day, and normally I love a white Christmas, but this year  it's keeping my family from driving up to see me.  I have today and tomorrow left where I can go out in the family lobby to see my kids, so I'm hoping tomorrow the roads will clear up and I can spend some time with them before transplant day.  I do have to say how happy I am that they have been able to come up and see me these last few days.  It has helped me a ton emotionally just to be around them. 
  Yesterday there was a family Christmas party in the lobby, so the kids all came up.  They had face painting, crafts, food, a live band.  They all had fun.  My nurse let me unhook from my chemo pole for the party because I was in the middle of treatment, and when Hope saw me she said.."Oh, mommy..where's your stroller that's helping you get better?  I was going to push it for you".  So dang cute.  I try really hard not to use the word "sick" around my kids.  I  always tell them I'm here getting better.  I think it makes it a little easier on them to think of that way..and that's exactly what I'm doing.
   Today has been a quiet day, for the most part.  We did have a group come up and sing Christmas carols in the hall, and then they left a gift.  I have actually had quite a few gifts brought in , mostly from families who have been here before during this time of year and want to send a little something to lift those up going through something similar.  It is so kind, and I can't wait to do something like that in the future. 
    I do have my sweet husband Larry here with me today.  He keeps me company, and listens to all my complaints.  The last day and a half were sort of sick days, I slept most of the day.  But today I feel pretty good.  So we have been up, going on walks.  Problem is--I'm only allowed to walk around the 4th floor.  Half of the 4th floor is a small circle in between 2 double locking doors (BMT UNIT), and the other half is just an in-patient floor with the family waiting room in between.  So far, I'm allowed to roam around all of the 4th floor..so long as I wear my super heavy duty green mask.  It's to keep all the germs out of my system (or paint fumes..I'm not sure).  Anyway, I'm on a bit of a short leash  (thanks to my "stroller"), but today I just felt like I needed to walk FAST.  I'm so tired of sitting around, and I really want to keep up my strength.  So Larry and I were power sprinting down the BMT hall today.  Not sure what the other patients thought when they saw us power walking by :)
  Well, I have to say so far this has gone better than I could have expected.  The doctors and nurses keep telling me that 2 -3 days after transplant is when it starts to get bad.  My immune system is completely being knocked out these last few days, and the effects of that will hit me next week.  But honestly, I'm going to try to continue to get through it as strong as possible so I can get out of here as quick as I can.  I know I've said this before...but it is so strange allowing yourself to become so sick, when the cancer itself never made me sick.  In fact, the last year I've felt better than ever!  And now in one day I will be preparing for a transplant that if I don't get, I would not survive from all the chemo this week.  On one hand I'm amazed at the technology, and on the other hand I'm astonished that this is my life (health).  But the very second I start to complain (to myself or out loud) I just remind myself that others out there go through things much more difficult than I am.  I know everyone has been listening to all the events of the tragedy in Connecticut, and here in Utah there has been a lot of news about a little girl, Emilie, that's family was originally from Ogden, Utah.  And I know the grief and pain those families are going through is something I could never endure.  But this is where I feel like we have one thing in common.  We all have to lean on Christ for support through our trials.  He knows what we can endure, and he will help us through them no matter how hard they seem.   He KNOWS first hand what we're going through.  I have gained a stronger testimony of what the atonement really is.  And for that, I am so thankful. 
     I just saw my blog has hit just over 22,000 views.  And while I started this for 2 main reasons (to document my journey and to update friends and family) I hope that there have been a few people that have come across this blog and found some strength if there going through something similar.  I know I've been able to read others blogs and find that little bit of encouragement that can be desperately needed. 
   I hope you all have a very Merry Christmas!   Love, Jen


PS: On the title of this blog post:  I went with my mom to see Kurt Bestor in concert last week.  It was amazing Christmas music.  One of his special guests was Alex Sharpe from Celtic Women.  She sang the song "Have Yourself a Merry Little Christmas", and as soon as she sang the line... "Next year all our troubles will be out of sight" I had tears come to my eyes.  I've never paid much attention to this line..but this year it's a little line from a Christmas song that brought me lots of HOPE! 

(Here's a link to a version of this song by a group I love -Coldplay)  Merry Christmas, Friends!
http://www.youtube.com/watch?v=WWsOTV1LsPo

So, i checked inpatient yesterday at 11:00.  I got to my room and was really happy to see it was a city view room.  I love my city!!  I had lots of nurses, doctors, financial coordinators and social workers visit.  My nurse came in around 2:00 to accesa my port and noticed it was a little hard to find a way to access it.  (( I actually had a bad experience when i had my port put in, which has been the only bad experience i've had at Huntsman)). 
  So..about yesterday and my port:  one thing i love about my port is that i can put numbing cream on before i leave home and then when i get accessed it's totally numb and i can't feel the needle poke at all.  But yesterday, by the time they came in to access my numbing cream had worn off.  So they accessed one side of my port and did fine.  But were unable to get the other side to access.  It ended up being 4 needle pokes which is right into your upper chest.  Ouch.  But one thing i've learned through all this cancer stuff is that physical pain can be very temporary.  And even though i would not necessarily choose it, i can endure it.
   So..about the port...i've had one before, so i kind of knew what to expect.  And this time i felt the nurses and doctors where very rushed, my conscious sedation did not work, so i was awake and felt a good part of the procedure.  I was not happy and talked to them about it.  And now, a month later, my port is not working right and they may have to replace it today.  I will be talking to them and possibly documenting it for the hospital.  I have no intention of pointing fingers or getting someone in trouble, but i do feel like it could be a good teaching opportunity for them and possibly keep from someone else going through that.  I have become a strong advocate on my behalf.  And by that i mean, i feel it is my responsibility to include myself in any decisions in my care.  Mostly i agree, and sometimes i don't and i let that be known in a way we can work together as a team.  I do feel super happy to be here at Huntsman.  I think it's an amazing place to be.  And i really need to just say how much i appreciate good doctors....but I LOVE NURSES!  :)
    When i checked inpatient i knew i would be able to see Lauren because she's over 14, but i thought it would be at least 3weeks or more before i could see Josh and Hope.  But yesterday, my awesome doctor told me i could go out in the waiting room and see them up until transplant day.  So last night they all came up and had a pizza party with me.  It made me so,so happy to be able to.spend a little time with them!!
  Another wonderful thing happened last night...my cousin Derrick and Aunt Eileen & Uncle Steve came up and decorated my room.  It's so christmassy and cute.  I will post some pics.
   Well, so far so good.  3 chemo treatments in two days, and i'm feeling ok. I continue to have so much support.  I'm so thankful!!

So..i'm posting this from my cell phone, so please excuse any typos :)

The following pics are..
1. My bathroom door is festive
2. Christmas banner that my mom surprised me with pics Sophie Dog, Josh....
3. Holiday banner
4. My Christmas tree...gorgeous!
5. You've heard of Barry Gibb?  This is "Beary Wigg" :)
6. My whiteboard.  Can you tell which part Larry wrote?
7.more pics on my banner of my little bug- Hope, Lauren& my mom.

A little, tiny light at the end of tunnel.....

Shhhhh....it's a Wig!      ( that's for you K & L )

This is my Holly, Jolly wig holder.  It works perfectly!  It has been a little hard to feel holly and jolly, even though this is usually my favorite time of year.  My stem cell transplant has been scheduled for Christmas Eve.  And as "un-festive" as that sounds, actually it's a great day to have my new "birthday".  I haven't really been good at updating, and I think it's because I've still been in a bit of shock, and not accepting this is happening (even though it HAS been happening).  But I do want to keep track of everything, because I want to have in writing what this process is like.  I also love having a place where friends and family can stay updated, and this seems to be the best way to do that.

So.....here's where I'm at.  I finished the 2 rounds of R-ice chemo to try to get the cancer to be mostly gone before transplant (the less cancer you have going in to transplant-the better the odds are of it staying gone).  After my last round of R-ice I was able to fly home for a week.  It was so, so nice to be home and be with my family-but it was hard too.  I didn't feel really well because I had just had a chemo treatment.  I was mostly tired.  So I wanted to jump in and do the things I love to do as a "home management/ carpool specialist", but my body would not let me. Rude!! 
   While I was home, I was able to check in with some friends, get some appointments done for the kids, and get some appointments done for me. 
    I flew back to Salt Lake on Tuesday, and then Wednesday I started what's called the BMT workup to get ready for the transplant.  Really what it is, is a bunch of tests to make sure you're healthy before your insurance will approve covering the cost of the transplant.  It makes sense, it just ended up being a lot of tests.  They were:

Echo cardiogram / EKG test  (healthy heart)
Pulmonary function test (healthy lungs)
Mammogram ( healthy..well..you know)
PET scan  (to see if the cancer responded to R-ice)
Labs & Urinalysis 

So speaking of the labs....I showed up in the lab thinking I was there for A blood draw.  When I sat down at looked at the tray this is what I saw.......

All for me....21 vials.  So you can imagine the tests they were running. 

So then Yesterday I had an appointment with Dr. Glenn and she said the PET scan showed almost all of my cancer is gone YAY!!  She said there was a minuscule amount left in my abdomen, but the chemo I will get before transplant will get rid of what's left.  So she said I was OK to start the transplant. If I had to be glad about one thing through all this, it would be that my body is fighting and responding and this process is continuing to move along with no serious complications.  That is really a blessing.

NOW.... I'm done with medical for a few days.  Lar and the kids are driving down on Sunday night and that will be our Christmas Eve.  Santa got the memo, and knows to deliver our gifts Sunday night (what a great guy) so our Christmas Day will be Monday.  Then Tuesday, tentatively if my insurance has sent approval, I will check in-patient at Huntsman Cancer Hospital for one month. 

This process sometimes feels like a long, dark tunnel.  And even though I don't love the tunnel, at least I feel I can see the light at the end of it.  I KNOW the reason I am able to get through this emotionally and physically is 100% due to support I receive.  I have wonderful friends that have stepped in and work with Larry to keep everything afloat back home, and they know words could never express my thanks for that.  I have amazing support from my family here in Utah that have been to every appointment, every treatment and continue to take care of me.  And I have so, so many others who have helped in other ways, or offered prayers.  All of this combined has allowed me to focus on what I need to to get better.  When you take on one anothers burdens...this is what it looks like.  And what it means to someone it beyond what words can express. 

Good Thought:  My daughter. Lauren, just texted me to tell me was accepted into her school Student Senate for a second semester. She was also sent a letter from the National Junior Honors Society asking her to apply, and found out today she was accepted.  YAY!  I'm so proud of my kids and how diligent they are.  And also how resilient they are.  They continue to do their best and stay on track, and I am so proud of them.  Knowing how blessed I am to be their mom is what makes me want to try harder and get better so I can go back to being there for them in every way!!  Here's to hoping the next month flies by!!!  :)

Wind to my Sails....

I made it through my first R-ICE chemo.  It quickly brought back some old memories (chemo brain, steroid buzz, internal shakes, etc) and was nice enough to introduce some new ones (attack of the bladder).  I ended up taking some strong antibiotics and fortunately that helped right away.

I am feeling better and better every day.  I have a lot of fatigue, but am able to do more and more each day.  This week should be a pretty good week for me, and then I start back over on Friday for round 2. 

So...the best part.  The last few days I've had my family here in Salt Lake.  It was so fun to see them and to cuddle with them and just be with them.  I had a really hard time with the fact that I am here and they are there...because I'm their mother and I need to be with them.  I had some hard moments last week before they were here, where I would look in the mirror and I felt like there was emptiness behind my eyes.  Like the very essence of who I am was missing.  It really hurt my heart because I just associated it with me not being the wife and mother I want/need to be, and without those things I felt empty.

I had an opportunity to spend an evening out to dinner with my husband and I told him how I felt, an he gave me the best advice.  He told me to not fill myself up with the actual acts of "being a mom", (carpooling, school lunches, snack making, book reading), but to fill myself up with actually "being their Mother".  And all the sudden I got it!  I can be here and get done what I need to to get better, and I can still BE the mother they need.  He gave the example of my mom, and how normally she wouldn't need to carpool me around, or make all my meals, or entertain me (well..she is doing that right now), but normally she would not need to.  But she is still my mother.  It's something bigger--better.  Connected at the heart. 

I had a good opportunity to have my moms friend come over and give me a blessing with Larry.  In that blessing he said I would be able to fulfill all my duties as a wife and mother from afar during this process.  And you know what....I believe him.  It was the motivation I needed, and put a wind to my sails.  Now I'm ready to take on the next step...and keep moving forward! 

Thanks so, so much for all your continued thoughts & prayers!  Love, Jen

Ready or NOT....

So I had my consult appt yesterday at Huntsman in Salt Lake.  It was nice to be able to talk face to face with my transplant doctor.  He explained the procedure, and what to expect. 
  The transplant clinic is connected to the Oncology clinic (Dr. Glenn's office), so he went over to see if Dr. Glenn could come and talk with me about the preparation needed prior to transplant.  Dr. Glenn is an amazing doctor.  She is a lymphoma specialist, and really knows a lot about the disease.  She is an in-charge kind of person, and seems to always have answers for my questions.  I feel like I got a lot of good info at the consult appt. 
  What I really wanted to get was a time fame (ie:how long am I going to be away from my family).  She gave me the best case scenario, and it's what I plan on doing!  She said the first things I would need to do is a PET scan, Bone marrow biopsy, and have a port placed.  Then I would start a round of R-ICE chemo (which will be one day outpatient for the R(ituxin), and then one overnight hospital stay for the ICE).  And then I would have one week off, and then repeat.  After those 2 sessions of chemo I would have a re staging PET scan  (3 1/2 weeks in).  And if the cancer was completely gone I would move right to transplant.  But if the cancer had responded, but not completely gone I would have one more R-ICE treatment.
   Once I'm done with R-ICE, I will have transplant workups done: heart function tests, pulmonary tests, etc.  And once I check in-patient for the transplant I will start 5 days of intense chemo to completely wipe out my immune system (those days are considered -5, 4, 3,2, 1)  and then on day ZERO I get my harvested stem cells transplanted.  Day Zero is considered your new birthday, because you have a brand new immune system.  It has even wiped out my immunizations I received as a baby, so I get a new little yellow card and start those shots all over. Yay.
   So then from day zero to day 15 I will be inpatient waiting for the stem cells to graft, or turn into bone marrow (white blood cells).  At this point, if my counts are coming up on their own I could possibly be released from the hospital, but need to still stay in Salt Lake.  Then for 2 more weeks I will continue to go back up to Huntsman for follow up care.  And then after that 2 weeks if things are progressing smoothly, I may be released to go back to Grand Junction and have Dr. V start follow up care. 
   This is a lot of info, and it seems pretty fast and furious.  And it's hard for me to accept this emotionally because I was only prepared to come for the day.  Another thing that is really difficult is to know how great I've felt the last 2 years, and still feel, knowing what lies ahead.  But I have so much support offered to me here in Salt Lake as well as at home in Fruita, that I'm trying to just push forward and work on getting back to feeling super healthy. 
  I have received so many phone calls, texts and emails full of love and support, and I am so very appreciative of that.  I'm going to work on replying soon!  But I do thank you all for your concern and prayers. 
   I was following a little of Robin Roberts (from Good Morning America) progress on her bone marrow transplant.  I saw this video today and  I'm really going to try to implement this in my care/recovery.  She said :

"Your thoughts. Thoughts are so powerful. You've got to change the way you think in order to change the way you feel."

Click here to watch video

So tomorrow I start.  I will have my bone marrow biopsy and PET scan tomorrow.  And then Friday I will have my port placement surgery.  And then Saturday will be my first day of chemo.  Thank you again for all of your prayers.  I will continue to update as much as possible!  -Jen

Being Patient...

So, I was originally scheduled to start chemo last Friday.  But then, I got a call from the patient coordinator from the Huntsman Transplant Clinic.  She wants me to come down for a consult this week.  I am going to fly to Salt Lake Monday afternoon, have my consult Tuesday, and then fly home Tuesday night.  It will be nice to meet with them face to face and talk about the details of what is to come.  I'm guessing I will start treatment shortly after I get back. I'm trying to be patient. Part of me wants to hurry up and get started, so I can hurry up and get done! But part of me is thankful for this delay   :/   I will update after my consult. 

You never know where life will lead you .....

Well, I thought by not updating this blog, I was in the clear.  But as we all know, sometimes life just takes you places you never expected to go.  You can either roll with it, or jump back in the driver's seat and take control.  I, of course, am going to try to take control.  Although I understand some things are totally out of my control.  But for now...I'm just going to get on with it and do what I need to do.

So...here's why I'm updating.  For the past 2 years I have felt so good.  Lots of energy, no sickness..all my scans continued to stay clear.  I had a regularly scheduled CT scan last week and it showed some small lumps close to the outside edge of my skin (not regular lymph nodes).  So at first my docs thought it was not the lymphoma back, but I had a biopsy just to make sure.  It turned out that it was lymphoma cells, although it was an odd way to relapse.

After collecting some info, I was told I would need to start a pretty intense couple of cycles of chemo here in Grand Junction, and then if the cancer responds to that, I will transfer to Huntsman Cancer Center for a bone marrow transplant.  It's going to be a long few months upcoming.  But I have a lot of support, and again I know that this is something I will not go through alone, and for that I am so thankful!

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!

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!!!!!

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!  ♥
   
 

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!!
    

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)
 

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! 

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!

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!  

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!

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! :)

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

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!