Camera Happy

We have taken a ton of pictures of the kids this week & I wanted to share them.  I'm getting back to my camera happy self :o)

 

This is Will's favorite thing to wear...rubber fire boots, goggles & his Bobcat hat...it's his "football guy" outfit.

 

Will has also become quite the colorer.  He will literally spend hours coloring.  Its the only time he sits still for more than 5 seconds.  He also has to have his tongue sticking out while he colors.

 

I decided to make the kids' Halloween costumes this year.  Julianna was a mushroom and Will was a garden gnome.  Sadly, due to weather they didn't get to go trick-or-treating this year.

 

We had a jammie photo session one night and the kids wanted to make scary faces.  They were hysterical!

 

The kids had one last day of playing in the leaves as Joe cleaned our yard up after the storm this week.  Kids and leaves are so much fun.

 

Morning breakfast faces.

 

We had our Halloween tradition again this year, we carved pumpkins (Will didn't want his carved), roasted pumpkin seeds, made popcorn & watched "It's the Great Pumpkin Charlie Brown".  Love, love, love family traditions!

Lots of Pics!

I can't believe it has been almost 2 months since my last post.  I feel so bad for not keeping everyone updated!  To make up for my lack of posts I thought I'd share a few photos we took during that time :o)

 

We bought the kids canvases and let them go to town finger painting them.  Joe & I cut out different shapes and taped them onto the canvas first so when they were done we peeled them off and had very cute pictures.  Will had a tractor and Julianna had a bunch of flower petal shapes.  Both paintings now hang in our family room :o)

 

When I sold all my cloth diapers this summer I kept one for Will's keepsake box (I couldn't get rid of his firetruck diaper!).  He found it one day and insisted on putting it on...over his pajama pants!

 

Julianna loves making faces at people...she's pretty good too.

 

 

Julianna started her 2nd year of pre-school this year.  It is going so much smoother than last year (no crying every morning).  She has a friend that she talked about all summer and was so excited when she went the first day and Molly was there.  She has fun looking for letter of the week objects to take in for show & tell each week, and was so happy to show her daddy that she learned to "Stop, Drop & Roll" last week.

 

This is his Bob the Builder look (he even has all his tolls behind him) :o)

 

 

For Trick-or-Treat at the campground Will was supposed to a 50's guy (to go along with Julianna in a poodle skirt), but instead he became (as he calls himself) "Spikey Will".  Check out that hair!

 

 

Julianna wore a poodle skirt to Trick-or-Treat.  The weather was amazing that day and I rode on the wagon alongside them while they got their candy.

 

While Julianna was at school one day, I got the play-dough out for Will.  It was the first time he had ever played with play-dough at out house and he LOVED all the tools, especially the "pasketti" (translation:spaghetti) maker.

 

Since Julianna did so incredibly well during her root canal, Joe told her she could pick somewhere fun to go for lunch one day...she chose Chuck E Cheese.  The kids had an absolute blast and I purelled whenever I could (we also saw them disinfecting all the game tokens) & there were only 4 other kids there.  It was a lot of fun for the kids, but I don't think we'll be going back anytime soon. ;0)

 

 

I just had to share this next pic...can you guess what is next to Joe's cell phone?  They are carrots.  We planted a great little garden when I was feeling really good at the beginning of summer, then my chemo changed and the garden got neglected.  Of everything we planted we got 1 amazing green pepper, a handful of cherry tomatoes (Will squished quite a few of them) and two teeny tiny carrots.  So what do you do with teeny tiny carrots?  You wash them up and eat them...in a single bite.  They were really sweet!  Julianna wants to plant teeny tiny carrots again next year...haha!

An Emotional Day

I'm having a really rough emotional day today.  I'm having a hard time not thinking about what I "should" be doing. 

I should be playing with my kids...not sitting on the couch while they're at grandma's.
I should be school shopping for Julianna...not getting blood transfusions just so I have enough energy to walk across the room.
I should be grocery shopping & canning the veggies in our very neglected garden...not letting Joe shop & letting veggies go to waste.
I should have kids that have a normal mommy...not listen to Julianna tell me how she wishes I wasn't sick & that I felt better so I could play with her.
I should be going out with friends...not going months & months without seeing any of them.
I should be living a normal life...not dealing with this crappy cancer for almost 2 years now.
I should have a husband who can just be a husband & dad...not my caregiver and everything else.

I want normal again...and not our current "I have cancer" normal.  I want "I'm in remission" normal.  After almost 2 straight years of constant treatments, pain, feeling like crap, missing my kids, and so much more...I am ready for remission.

Lord, I am on this journey for reasons I don't know, and I know you have a plan, please give me strength to continue the journey and reach the amazing destination of remission.

Great Results!

A lot has been happening once again here at our house.  I started a new chemo treatment just over a week ago and the results I've gotten so far are beyond AMAZING!

Just before I started this treatment I was up 2 lumps on my shoulder, 1 in my leg, 1 on my back, 1 on my chest, and 4 on my head.  Just 9 days after starting the new treatment I only have a very small lump on my chest and a small one on my leg left!  WAHOO!  That is truly amazing! 7 of the 9 lumps that had appeared in just a few weeks time are gone after just one treatment!

I am beyond grateful for Dr G and how caring he is.  The new chemo has hit my white blood cells much harder than any other treatments I've had.  They have been at zero for the last 4 days...that means I have no immune system right now.  As a precaution he has been giving me IV antibiotics and he even came into the office on a Saturday to give me a dose (he came in for me & 1 other patient).

My family also held a garage sale this weekend to raise money to help with my medical bills and to say it was a huge success is an understatement.  We had so many people donate items for the sale, and the number of people who came out & shopped was crazy!  There were even several people who said they came to the garage sale last summer that my sister had for us & were glad to see she was doing it again this year.  Joe & I of course greatly appreciate every one's efforts & help.  I don't even know what we would be doing or where we would be right now without the amazing generosity of our family, friends and even strangers.  So thank you to everyone!

I have high hopes for this new chemo treatment, despite its nasty side effects (nausea, vomiting & just plain yucky feeling for several days after treatment) I am confident that it will work and I am going to kick this cancer!

My Little Artists

While searching Pinterest the other day (you know, something I never do...lol) and I cam across a list of 100 things to do this summer with your kids.  Julianna loved the list and we decided every few days we'll pick something from the list to do.  Yesterday, she picked finger painting.  But since I can't do things simply, we went to the craft store and bought the kids each a small canvas and some paint that went with the colors in our family room.

But that's still not the end of my meddling in their finger painting.  Joe cut out a tractor & a barn and taped them onto Will's canvas and I cut out a bunch of different size flower petals from painters tape and arranged them on Julianna's canvas.  Then they got to paint to their heart's content.

Having lots of fun!

Will's painting

Messy, messy, messy

Julianna's painting

Not quite as messy

After just a few minutes of drying we removed the tape & pictures...here's how cute they turned out!

Julianna is looking forward to getting to choose another activity from the list.

New Chemo...Again

After weeks of waiting, I finally have a new treatment plan.  If you hadn't heard yet, my previous chemo had stopped working.  I currently have 7 new lumps that I can actually feel.  My back pain has also returned.  I spent an entire weekend on a morphine pump in order to get the pain under controls and I am again on pretty good size doses of it to keep the pain under control.  So despite my last scan showing such great results things have progressed and very quickly.

Starting next week I will begin a new chemo regimen.  I will be getting topotecan and ifosfimide.  They are both drugs that I haven't had before.  I'm a little nervous just because I'm not sure what to expect as far as side effects go.  But Dr G is optimistic about this combo.  I will have chemo 3 days in a row every 3 weeks.  Prayers are still going up that I can kick the cancer's booty and I have no doubt that I will.

One change I have made to hopefully help reach that goal, is a big change in my diet (well it was a big change) 2 weeks ago, I decided to become a vegetarian.  I was doing really well too ( a few bites of chicken at a wedding...I RSVP'd before changing my diet, and a hot dog at a baseball game...how do you resist that?).  Joe & the kids (well the kids had no choice) decided to make the change with me.  After talking with Dr G (who is apparently very anti-vegetarian)a new decision was made based on me & my actual nutritional needs.  I am going to eat meat occasionally (maybe 1 or 2 times a week), but will continue making the switch to all whole foods.  If you want to follow my journey as far as food goes you can read about it at my other "old" blog, Spoons, Spades & Stitches.

I am really hoping that this new chemo will help me kick the back pain quickly and get me off the pain meds (no driving privileges again) so I can get back to normal.

Julianna and I at the CP picnic and baseball game.

Special Nights Out with the Kiddos

Joe & I have been trying to do more fun things with the kiddos this summer, especially since last summer was such a bust due to my surgery.  So Friday night, Joe took Will to a local truck night.  Will loves big trucks, but even more Will loves tractors and it was lawn tractor tractor pulls.  Needless to say Will had a blast.

Yesterday we took Julianna to the cerebral palsy picnic & minor league baseball game afterwards that's sponsored by the children's hospital where her doctor is.  Erin & Jason went as well and took all 3 of their kids.  The kids all enjoyed playing kiddie carnival games, making crafts & posing in character pictures.

Ellie

Julianna

Ian

Emma

We also stood in line forever because the kids wanted their faces painted...I think it was worth it...look how cute they turned out!

Julianna wanted a butterfly.

 Erin's kids were all tigers.

They all enjoyed the baseball game too.  Julianna had been asking for months when the carnival & baseball game at her "special doctor's" was...now she's asking when the next one is.  Haha!

CAR Treatments

So after a crazy treatment week, I finally have a few minutes to let everyone know what's going on with my eyes.  Last fall, when I was in TX, I was diagnosed with CAR (carcinoma associated retinopathy).  Basically my body is producing a certain type of anti-body to try to fight my cancer and that same anti-body has decided to fight my eyes.  CAR is very rare, my new retina specialist here says he may see a case once every 10 years or so, so he is working with DR S in TX to work on my treatment.

Until about a month ago, my eyes were stable, then I started noticing a dark grey cloud right in the center of my vision in my left eye.  It got bad enough that I quit driving again (I couldn't see the speedometer when I was driving).  I also started having problems reading, I had to take my glasses off to read anything and things had to be about 4 inches from my face.  My vision over all was just getting worse too, so I mentioned it to Dr G and off to a retina specialist I went.

After consultations between Dr G, Dr S & Dr N (new eye doctor) a treatment was devised.  I received a shot of cortisone in my left eye last Friday and I started IV treatments this past week.  I had 3 days of IV steroids and 2 days of IV immunoglobulins (some special anti-body to fight my own body's anti-bodies).  I'll keep getting the steroids and IGIV every 3 weeks for a not yet determined length of time.  And I am scheduled to go back to the retina specialist and get a shot of cortisone in my right eye this next Friday.

This has been just another set back, but I am keeping my chin up because some part of the treatment is working.  The cloud in my left eye is gone and I'm driving again, and I can read with my glasses on again!  I've noticed a big improvement in just one week and am so glad I didn't just shrug it off as bad eyesight.

I will say that I did a lot of complaining this week.  It was very uncharacteristic of me.  I was not happy with 5 days of 4 hour or longer treatments, but I know how important they are and am glad its over.  Next week I have chemo and am hoping it doesn't knock me down too much because I have been feeling amazing and would like to continue feeling this way!

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.