Monday, November 29, 2010

Almost half way done!

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

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

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

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

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

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

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

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

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

Thursday, November 25, 2010

I think I can BRAG because I'm AMAZED

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

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

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

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

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

Tuesday, November 23, 2010

Can't Wait

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

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

Thursday, November 18, 2010

A girl's got A LOT to live for!

Today was life changing.

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

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

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

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


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

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

How 'bout a good pic instead??

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

Sunday, November 14, 2010

"Arrrgh, me Hearties"

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

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

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

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

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

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

Have a wonderful Sunday!  ♥~

Wednesday, November 10, 2010

Round 2 goes to the girl in the comfy sweats

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

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

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

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


Tuesday, November 9, 2010

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

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

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

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

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

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

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

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

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

Sunday, November 7, 2010

Is she wearing a wig???

I'm Not as lucky as the random person I GOOGLED that only lost some of his hair.  But the good news is... really doesn't matter..thanks to my cute wig  (Big thanks again to Joni!!!!!!!!!!!!!!!)

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

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

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

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

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

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

Thursday, November 4, 2010

Hair today.....gone tomorrow

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

Monday, November 1, 2010

Running marathons in my sleep

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

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

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

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

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

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

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