Cupcakes at the Camper

Since I've been feeling so good lately, we've been spending more time at our camper.  The kids absolutely love it there!  They both hate leaving it and Will even worries that every time daddy leaves the house he's going to the camper without him.  Last weekend, we took the kids to a cupcake decorating activity while there and they enjoyed every bite of the yummy cupcakes they decorated.



Will is getting so big!  And independent!

And Julianna is such a grown-up anymore, she says the most adult things sometimes!

Thoughts

This morning my cousin's wife commented on my Facebook about how happy she is for me and in her comment she also said she hopes I have been journaling my thoughts throughout all of this.  I haven't.  Other than my updates here (which are mostly medical), I haven't written down any of my thoughts about this journey, or really any of my thoughts about anything.

So, what are some of the thoughts that run through my head?  Here's a few...

*I will beat this cancer...I've never thought differently.

*Chemo sucks...there's no other way to describe it.

*Joe is the most amazing man in the world...he has held our world together and never complained.

*My kids grew up and I missed it...I missed Will as a baby, he was only 8 months old when I was diagnosed and suddenly he's 2 yrs old.  And Julianna is a little person, I swear she isn't even a kid she acts so grown up sometimes.

*My kids have missed out on a good mommy...neither one remembers me before I was sick, all they know is sick mommy.

*I have more friends than I thought...the number of people that came to my benefits and that have helped my family is huge!

*The friends I have are awesome.

*People really are good...I can't believe the number of strangers that have reached out to us in so many ways, from sending me cards to paying for plane tickets.

*I miss ponytails...I thought I wouldn't miss my hair so much, losing it the second time was harder.

*I don't miss bad hair days...throwing a hat on to leave the house is super easy.

*I like being skinny...although I would have preferred a different way to lose the weight

*My family is super duper.

*My sister may really be a super hero.

*Thank goodness for grandmas...I don't know what we would have done without my mom and Joe's mom, their houses are our kids second and third homes.

*Prayers do work...our family can prove it.

*It's ok if Julianna's bow doesn't match her outfit, or if her pants don't match her shirt.

*I like staying home...having nowhere to go for a whole day is nice.

*I love to hear my kids laugh.

*I will beat this cancer...I'll never think differently.

Remarkable!

I had a CT scan today to check the progress of how well my chemo is working.  Dr G told me there could be 3 outcomes to expect...1 )my tumors may have shrunk some, 2) my tumors could have stayed the same size, or 3) my tumors could have gotten bigger.  Well Dr G's exact words when looking at my scans were "your response to the chemo is remarkable!"

Here's the highlights from today's scans (we don't have all the results yet):

*I've had a lot of fluid around my lungs for the last 6 months and today's scan showed it is ALL GONE.

*My pancreas is still a little enlarged, but has significantly SHRUNK in size since my March scans.

*Dr G showed us a scan that had a HUGE mass in it from March (I'm not sure where the mass is, somewhere in my abdomen)...I mean really big, took up half the scan....today's scan showed it is GONE!

We are still waiting for some of the scan results, but I am confident they will be just as good.  Dr G didn't point out a single tumor or mass in today's scan, NOT ONE!  I am hoping that means once the rest of the scans are looked at they won't show any tumors either!  Dr G said a few times that if I hadn't just had the scans done at his center, he wouldn't have believed they were mine  :o)

He is going to call Dr Z in Texas and discuss what to do next, but he would like to do 2 more rounds of treatment and then possibly stop (at least that's how Joe and I took it)  He said he is just amazed at how well this chemo is working for me.

Thank you, thank you, THANK YOU to everyone that is praying for me and my family.  The prayers are definitely being answered.  God is good!

Little Triumphs

These days I love to share my little triumphs.  Here's a few of the latest (if you haven't heard about them yet)...

*The last 2 rounds of chemo have been accompanied by dramatically lessened side effects.  I didn't take a single anti-nausea pill after this past Monday's treatment!  This definitley makes me dread each treatment less :o)

*I'm still exhausted most of the time, but my mornings seem to bring a little more energy.  I take that time to play with the kiddos.  I even got on the floor inside a tent with Will not long ago!  Until recently, if I got on the floor I literally had to have someone pick me up.

*My muscles are slowly regaining strength.  Due to being on a steroid for way too long, I lost a ton of muscle strength.  When I came home from Texas I couldn't even go up any stairs.  Not only can I now go up stairs (and I just started doing it by alternating feet like a normal person), but I CAN PICK UP WILL!  I haven't been able to pick him up since December.  It is so hard to not be able to pick your child, especially when he is a crazy daredevil that gets hurt a ton and you want nothing more than to pick him up and comfort him.  I can't carry him around, but I can at least pick him up and hug him :o)

*Tomorrow, we're having a building party.  Several of our family members are coming over to help finish installing a fence around our backyard.  Why is this a triumph?  I can't take the kids outside without another adult because I can't run or chase after Will.  Although our street has a low speed limit, cars speed all the time and Will does not stay in the backyard and he does not listen when told to stop.  Once the fence is up, I can take the kids outside and not have to worry about Will running into the street.  A little bit of parenting independence...triumph.

Those are just a few of the little triumphs I've been celebrating.  I plan on celebrating many more as the weeks go on!

Long Time No Writing

I know, I know, its been forever since I've posted.  Its a good thing though.  I have been enjoying my time at home so much that I just haven't gotten on the internet.  I check Facebook on my phone, but today is the first time I have used my laptop since February.

So what's been going on since my last post?  I have been doing really well actually!  Ok, so I have the nasty side effects of my chemo, but they are much more tolerable here at home than if I was in Texas.  Thanks to Joe and my sister, we were able to find an oncologist here at home that was willing to work with Dr Z.  So I have been seeing Dr G since I've been home.  He's very aggressive with my treatments and keeps a close eye on my counts (which completely bottomed out about 2 weeks ago).  I really like him!

I have also gotten a port.  Its basically a permanent IV access just under my skin on my chest.  It saves my poor veins from more damage, but it was definitely not fun having it placed.  Its finally getting less tender and not as painful to have it accessed.

The best news of all...I went back to Texas for scans and to see Dr Z last month and my scans showed a dramatic improvement in my tumors!  2 lymph nodes that were so large you could see the bumps had shrunk back to normal and you can't see or feel them anymore!  It was definitely an exciting trip to Texas (short too...only 3 days!).

The kids have been doing great, they like having mommy home, even if I am just sitting and watching them play.  Julianna has been doing great at school and at her physical therapy.  Will...well Will is a maniac.  :o)  He is all boy and does everything at 90 miles per hour.

I am so glad to be getting treatments here at home, I love seeing Joe and the kids every day!

Finally...Some Good News!

On Tuesday, I got the best news I have gotten since May.  My CT scan showed all my tumors have gotten smaller after just one round of chemo!  One tumor that was in a muscle has even completely disappeared!  None of the fluid build up I was having is returning.  And my blood levels have all returned to a normal level (still low normal, but normal).  The only negative news I got was that 1 tumor is not responding to the chemo and has grown.  3 weeks ago it was a 10 cm and Tuesday's scan showed it has grown to just over 12 cm.

This has pretty much stumped Dr Z.  So he decided he wants a biopsy of it to get a better idea of what we're dealing with.  Unfortunately, the soonest I could get in for a biopsy was next Wednesday, so that means another week here in Texas.  The biopsy will be next Wednesday, I'll spend Thursday just relaxing, Friday I'll see Dr Z and then hopefully fly home on Saturday.  That would give me about a week and a half before I have to be back in Texas again.

I was also finally able to get my second round of chemo yesterday.  After some major scheduling disasters I finally got in and got started.  I'm glad its over.  I'm feeling relatively good today, just a little yucky.  I was going to walk to the grocery store, but started the walk and realized I just wasn't up to it, so my wonderful mom went by herself.  We are in desperate need of groceries considering we thought we'd be flying home today.

The other big thing happening this week is that Will has a cardiology appointment today.  I really wish I was there for it, I get so nervous for his appointments since Dr P said its just a matter of time before Will will probably need another surgery for his coarctation.  I'll be on pins and needles all day until I hear from Joe.

I also have to say how proud I am of Julianna.  Since she turned 4, she has not cried a single time she has been dropped off at school.  She told Joe today that only 3 year olds cry when they go to school.  4 year olds are big kids and don't cry.  She is growing up so fast! 

I miss both my kiddos so much, but knowing this chemo is working makes things much easier this time around.  I think knowing things are finally going in the right direction can make anything seem better.

Crazy 2 Weeks

The last 2 and a half weeks have been absolutely CRAZY!  Life has been an whirlwind and its hard to remember everything that's happened (partially because I was super medicated for some of it), but I'm going to try to fill everyone in on what's been going on.

Since Thanksgiving I have been having some pretty crazy stomach issues, which included some pretty major water retention and the expansion of my belly.  The first week of January my belly got huge...I mean I looked 9 months pregnant huge and couldn't fit in any of my clothes.  I started having a lot of back pain and was just miserable in general.  On January 5, I decided to go to the ER because I was in so much pain and Dr Z wanted me to make sure I didn't have some sort of obstruction causing all the problems.

In the ER, they got my pain to at least a manageable level and did some tests that showed I had mild pancreatitus.  The ER doctor decided I should be transferred to the clinic and admitted for pain management.  After a long day in the ER, I was finally transferred at 3am to the hospital where Dr H is.  We thought this was the best idea considering I was supposed to meet with him the next day and then start the chemo regimen that Dr Z had chosen.  Boy were we wrong.

Dr H completely disappointed us and we have since decided not to work with him or the clinic anymore.  First off, I was so full of medication that I don't remember much of my hospital stay or even the next few days after I was discharged, but I do remember how upsetting Dr H's conversations were.  He refused to do Dr Z's treatment, he wanted to do his own treatment and after 2 weeks if it wasn't working he said we would need to discuss hospice care.  WHAT?!?!?!  I didn't want his treatment I wanted the one Dr Z had explained to me and I am so not in any shape to discuss hospice care!!  I am still quite healthy, you know besides the cancer thing...lol (oh, while there, they did remove almost 2 liters of fluid from my stomach which made a huge difference...we learned the fluid build up is a defense mechanism of my body's against my tumors)

So we said good-bye to Dr H and the Clinic on Friday and on Sunday Joe, my mom, my dad and I flew back to Texas.  I only vaguely remember flying down here at all, the Clinic had me on so many drugs while there I still felt the effects days later.  We met with Dr Z on Tuesday the 10, and I had my first chemo session that evening.  It was a LATE night, I finished my chemo at 1am!  On Wednesday, I didn't feel very good at all, but assumed it was the affects of the chemo.  I didn't sleep at all on Wednesday night, I was up in a lot of pain (my back again) and my stomach had gotten bloated again.  By Thursday morning, I was feeling very short of breath and we all decided I should go to MDA's ER.

I got there at 9am and after a little while they got my pain under control again (and I wasn't out of it) and they did a bunch of tests which determined I had a large amount of fluid built up in my stomach again and that I also had some in my lungs and had pneumonia.  So it was decided I would be admitted, I just had to wait for a room.  I spent 32 hours in the ER waiting for a room, my mom slept in a chair beside me and Joe and my dad slept in the waiting room.  That was an awful night.  I was in pain a lot and short of breath and had multiple panic attacks.  That was the first time I have ever had a panic attack and wow they are not fun.

On Friday, after I got my room, I had 2.2 more liters removed from my stomach and immediately felt some relief in both my pain and my breathing.  I spent the next 5 days in the hospital getting IV antibiotics, adjusting pain meds, trying to get my blood levels under control, getting my crazy high blood pressure controlled, and a few other things including a blood transfusion.  I am still trying to recover from the hospital stay, I'm still pretty weak and get tired really easily, but every day I'm a little better.  Due to blood counts, I had to skip my second chemo session.  I ended up getting another blood transfusion and 3 more nupogen shots (shots to stimulate white blood cells).  Hopefully, when they check my counts on Tuesday I'll be able to have my 3rd session.

If I have my 3rd session on Tuesday, then we will hopefully be flying home on Thursday and I won't have to be back here until February 6.  We're currently working on trying to find an oncologist back in Ohio that is willing to give me Dr Z's treatments.  If we can't find one, then I will be moving back to Texas because my treatments are every week for 3 weeks, then 1 week off (so prayers we find a cooperative oncologist are greatly appreciated!). 

So that's how the last few weeks have gone. Crazy.  We've cut our ties with my original oncologist and the Clinic, got plane tickets and another apartment and came to Texas with 24 hours notice, I've started my chemo, had pneumonia, was hospitalized twice, had 4 liters of fluid removed from my stomach (its stayed away so far, which is a small sign the chemo is working), and am waiting to find out where I will be getting my chemo from now on.  Phew...I think I need a vacation.