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.

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.

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!

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!

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.

A Timeline (Part 3)

Here's the final wrap up of the last year...

June 2011
*June was blissfully uneventful for the most part :o)  I was watching the kids again and was even doing the things I had missed around the house.  Julianna and I went berry picking and canned homemade jam.  We spent some weekends at the camper.  And life was good!

July 2011
*July 4th weekend, we went to the camper and had both our families over for a picnic.  It was then that my back pain returned with major vengeance.  I was in almost as much pain as I had been 9 months previously.  I could barely walk or move.

*Dr H scheduled me for another long MRI (4 hours!), this time including scans of my pelvis.  He put me back on pain meds until the results came back, but they didn't seem to help much.  A few days later when I met with him he gave me the news that there was a fairly large tumor in my pelvis and it was pushing on my sciatic nerve (finally a source for my pain!).  I was scheduled to see a surgeon for a consult.

*I met with Dr L (the surgeon) on Monday, July 18 and after seeing my pain and looking at my scans, he scheduled me to have surgery just 3 days later!  I was so thankful for him being able to get me in so quickly.  The day before my surgery, I was in so much pain I pretty much just layed on my parents couch crying all day and counting down the minutes between pain meds.

*July 21, I had surgery to remove the tumor from my pelvis.  Basically, they cut clear through the left side of my rear end to get to it.  I would go through 10 c-sections again before I would ever want to have the surgery to remove that tumor again.  It was an extremely painful recovery.  I spent 5 days in the Clinic recovering & then was transferred to a rehab facility.

*While in the rehab facility, I was the youngest resident by at least 50 years...haha!  I had 30 minutes of physical therapy each day.  By day 3 I had decided it was silly for me to be there and I was ready to come home.  I was told I could go home the next morning :o)  Unfortunately, Joe got a call from Dr H shortly after that and we received the news that I had multiple new tumors show up in my last scan and that my cancer was again getting worse.  I was so upset I didn't give anyone a chance to keep me there.  I told them I was going home right then.  I hadn't seen my kids in over a week and I just wanted to be home with my family.  I was discharged within 30 minutes.

August 2011
*I spent August trying to recover from my surgery (it was awful!) and starting radiation therapy on the parts of the tumor that could not be removed.  Joe also got things rolling on getting a second opinion on my treatment at MD Anderson.

*August 25, I started having back pain again.  This time I had a large knot on my back that was causing the pain.  It felt like a really tight muscle knot and when it was rubbed it would ease a little.  After some completely sleepless nights Dr H ordered another MRI of my back.  This one showed I had a new tumor next to my spine and that my cancer was spreading quite quickly up my spine.  So radiation to my back was added to what I was already getting on my pelvis.

*By the end of the month things were all set for Joe and I to travel to Houston, Texas to get my second opinion at MD Anderson the beginning of September.

September 2011
*I finished radiation therapy on Sept. 7 and Joe & I flew to Texas on Sept. 8th.  September 9th, I met Dr Z for the first time.  We instantly liked him and were really excited about everything he had to tell us.

*After lots of testing, Dr Z decided on a trial for me and things moved pretty quickly.  We had to get an apartment, my parents flew down to help out, and I sadly wasn't able to return to Ohio to spend time with the kiddos.  I started chemo and thanks to the steroids I got as a premeds I started feeling amazingly better!

*During all this time, a few things were discovered about my eyes.  It is thought  that I have carcinoma related retinopathy, BUT Dr S is so unclear about things that we still aren't exactly sure what is going on with my eyes.

October 2011
*I continued with chemo during October & dealt with periods of my severe back pain.  We still don't know what is causing the back pain, but it seems to always be the worst at night, and so far the only thing that helps it is steroids, which none of the doctors want me to be on.

*Joe and Erin brought the kids out to see me for a week and I couldn't have been a happier!  We took the kids to the zoo, and shopping, and we just had a wonderful time.  Watching them leave for the airport was so hard.

*October 21, I met with Dr Z to go over the most recent scans & I learned that the trial I was on was not working.  The cancer was still slowly growing.  I was scheduled for an appointment the following week to find out a new plan of attack.

*October 25, I was put into a new trial and just a few hours later my mom & I were on a plane back to Ohio for a short trip.  It was so nice to be home!  It was even nicer to see Julianna's face when she woke up the next morning and found mommy was not in Texas!

*Here's where my miracles really start rolling in.  A few days later, on October 26, Dr Z called Joe and told him they were 99% sure they now had found the primary source of my cancer.  I am now diagnosed pancreatic neuroendocrine tumors (PNET).  The good thing about that is that there is a specific treatment for it!  Even better was that a trial just for PNET opened that day and I was accepted!  And it included that new chemo drug that had been approved in May!  This drug (everolimus) has an 86% success rate at reducing the size of PNET tumors and a high percentage of patients reach remission very quickly.  I was thrilled!

November 2011
*Erin & I flew back to Texas and I started my new trial on November 4th.  I love that this chemo is all pill form.  No IV's or ports for me baby!  I alternate between 2 different chemo pills each day.  Its so simple.  It also doesn't have the extreme side effects as the chemo I had last winter.  So far, I still have my hair :o)  Its thinner, but no balding!  I also, have an incredible appetite...no nausea or sickness!

*I made another quick trip back to Ohio last week and got to attend the fundraiser my family & friends threw for us.  Then my mom and I returned to Texas.  This time we brought Julianna with us.  She was having such a hard time being away from mommy that we decided it was in her best interest to be with me for a little while.

So that's where we are as of right now.  We are planning on being here in Texas through December 6th when I have some tests and scans scheduled, but after that I shouldn't have to be down here except for a few days a month.  I can't wait to see how well this chemo is working!  I know in my heart that God has big plans for me and that this cancer is just a bump in the road.

I hope the last few posts haven't bored everyone, but I thought it would be easiest to just do a recap and catch people up in case they had missed anything.  If you want anymore in depth details you can click here and read all my cancer related posts.

A Timeline (Part 2)

Here's some more about how the last year has gone...

January 2011
*A few weeks after my first round of chemo I had repeat scans done and miracle #1 appeared...a mass that had shown up on my spine before chemo was completely gone...GONE!  The doctors were amazed.  I continued with chemo sessions every 3 weeks and scans every few weeks.

*I went in for a routine CT scan on January 21 and instead of heading home after the scan I ended up admitted to the Clinic with a pulmonary embolism (a blood clot in my lung).  I had no symptoms and felt great, but was so thankful it was caught!  I started blood thinner injections and the PE was resolved by my next scan.  Unfortunately, I still have to do twice daily blood thinner injections...not fun.

February 2011
*On February 5, my sister, family & friends held a benefit in my honor to help raise money for our medical expenses.  I was completely overwhelmed at the success of the event!  They did an amazing job and I was so touched that so many people came out to support me!  I have never felt so much love.

*The chemo began taking a harder toll on me as each session happened.  I would feel really crappy for the first week after (no appetite, really tired & just completely drained), I'd feel slightly better the second week and the third week I'd feel great...unfortunately I had chemo every 3 weeks, so it was a never-ending cycle.

March 2011
*I had a repeat bone marrow biopsy to check the progress of my cancer and was completely floored when it showed I was in "nearly complete" remission.  I was given the option to either stop chemo and just monitor the cancer or I could opt for 2 more rounds and see if I could get complete remission.  I opted for 2 more rounds.  Dr H said he still couldn't believe how well I was responding to the chemo.  He was so pleased.

April 2011
*After noticing some hearing changes, Dr H switched the type of chemo I got for my last round.  I still have some hearing loss(a side effect of cisplatin), but overall it is very minor.  I finished my last round of chemo on April 7 and then it was just a waiting game...3 weeks and then a repeat biopsy to check for complete remission.

May 2011
*May was a busy month for us medically.  On May 5th, I went to the Clinic to see Dr H and get the results of my biopsy.  It showed I was in COMPLETE remission!  Since then, we have started to doubt whether I was actually in remission.  There were no scans of my tumors to check them and now we know they were obviously still there.  Another important event took place on May 5, but we had no knowledge of it or that it would become important to me...that's the day that my current chemo (everolimus) was approved to treat pancreatic neuroendocrine tumors.

*May 10th, Will had his second heart cath since his birth.  The doctors tried to balloon his aorta to make it bigger, but unfortunately it wasn't successful (he will see his cardiologist, Dr Awesome, in January to determine what our next step is, right now its just monitoring him).

*Just 2 weeks after getting the great news about my remission, I had a few days of the same severe back pain I had experienced in the fall.  Dr H immediately scheduled an MRI of my back for me, it didn't show anything, and we were relieved.  We would later learn it was because the tumor causing the pain wasn't in my back, but was in my pelvis.

*May 25th, we left for a MUCH NEEDED family vacation to visit friends in South Carolina and then to spend a week with my family at the beach.  It was the first time we felt like a normal family in a very very long time.

(To be continued again...)

A Timeline (Part 1)

My amazing friends and sister organized and threw yet another successful fundraiser for me and my family this past weekend.  I am constantly in awe of the generosity and care that people have shown us during the last year.  The money from the fundraiser is going to make it possible for me to continue to fly to Texas for appointments and treatments.  YAY!  I am going to write more about all those wonderful people and what they've been doing for us, but today's post is for all the people that asked me this weekend about exactly how the last year has gone and how I am feeling about where I currently am (in treatment and life). 

So here's a hopefully easy to understand timeline of the last year (including some lovely parts that I know are indeed answered prayers), since there's so much info to tell, I am going to break it into several posts.

September 2010
*The normally sporadic back & leg pain (along my sciatic nerve) begins to increase and occasionally interferes with daily activities.

October 2010
*I see a new primary care doctor and she suggests physical therapy for the pain.  I begin PT, but the pain just continues to worsen.  I start some pretty heavy duty pain killers, but they don't work very well or for very long.

November 2010
*The pain got so bad I was no longer able to take care of the kids.  I would average about an hour of sleep per night.  The day after Thanksgiving, I ended up the ER for the first of almost a dozen visits for severe pain.  I continued with PT, but still things got worse.

December 2010
*After much pushing we were finally able to get me an MRI of my back (this was after my PCP told me she wouldn't give me anymore pain killers and that she was concerned I might have just been a drug seeker...oh yeah she totally went there).  The MRI showed some minor back issues (a slightly herniated disc and degenerative disc disease), but I was told by the back doctor (no clue what his name was) that they were not severe enough issues to be causing me this much pain.  I then received a call from my primary care doctor (at 7pm on a Thursday night) that the MRI showed I had abnormal bone marrow all through my back and that it was often a sign of cancer, but try not to worry until I can get more information.  Not worry???

*I met with a local hematologist and had a bone marrow biopsy.  The phone call I got with results was shocking to say the least.  I was immediately sent to the Clinic with an initial diagnosis of Harry Cell Leukemia (Dec. 18).

From Dec 18-Dec 25 I have very few memories.  I only vaguely remember any of the hospital stay, so the next events are what people have told me happened.

*I had a gazillion tests done over the first week I was in the Clinic, more MRI's, PET scans, CT scans, another bone marrow biopsy and other tests.  I slightly remember having a pretty nasty fall one day and hitting my head really hard, which didn't go over well with Joe or my mom considering I was not supposed to be left alone.

*It was determined that I did not have leukemia and I was transferred to a different floor of the hospital and Dr H became my oncologist.  Dr H is definitely the first of some answered prayers.  It was decided that I had Neuroendocrine cancer, but they had no idea where it was coming from and were shocked that it was in my bones.  None of the doctors there had ever seen some with NETS in their bones.  I remember being told later on that they contacted multiple other hospitals and doctors for consults and no one was able to give any information about my rare NETS.

*On Dec. 23 Dr H decided to start me on chemo.  I later learned that all the other doctors told him the chemo wouldn't work on NETS (it usually doesn't) and that it was probably a waste of time. Dr H didn't listen and the first of all the prayers was answered.  After just one dose of chemo, Joe and my mom said I improved so drastically they were shocked.   By the 3rd day of chemo, I can remember a lot more.  I was in so much less pain. 

*Dec 28, I was discharged from the Clinic to go home.  The chemo had made such a difference in me and from this point on I can remember everything fairly well.

*Dec 31, we celebrated Christmas and New Year's together as a family  :o)

(To be continued...)

Quick Trip

We're baaaack.  Look out Texas, I have returned!  This time I feel better coming down here.  I am coming down here with a game plan (mostly) and that feels so much better than when I came back in September not really knowing what would happen.  Its also a lot easier coming down here this trip because it is a very short trip, just a few days. 

I am supposed to be packing a ton of appointments into my short trip, but as of this very minute, tomorrow's (I guess actually "today's" since its 2am) schedule is still blank.  It should be filled with all the scans this new trial needs me to have before chemo begins.  So, it looks like I will be making lots of phone calls in order to get them all done so I can start the trial on Friday.

Friday's schedule had a new appointment added to to it today, I am going back to neurology to have my right leg checked out (my left leg was the one affected by my surgery in July).  While I was home, the back of my right leg (from my rear end all the way down to my 2 smallest toes) went numb.  The numbness is weird feeling, but doesn't really bother me.  What did bother me was the excruciating pain I was having down that leg as well.  I really feel it is some sort of pinched nerve because sometimes I can just shift positions and the symptoms vanish almost instantly.

Saturday, Erin and I get to just hang out with nothing to do.  Unfortunately, the weather is supposed to be cold the next few days or we'd probably hang out by the pool.  Then, on Sunday, we'll return home, me for just a few days.  Due to me being a not so smartypants, I didn't buy the travel protection for our plane tickets when I originally booked them last Thursday.  I didn't feel we needed it because I knew I was only going to be here for 2 days and then wouldn't be back again for a month.  Then the trial I am in changed and so did the plans.

Technically, I could stay here in Texas and not return home since I will have more appointments each week for the next month or so, but since I didn't get the travel protection, it was going to cost me as much to change our flight plans as it would to just get another ticket for me for next week (I'll only need a one-way ticket next week).  As promised to Julianna before my trial changed last Friday, I am coming back after just a short trip, I'll be there a few days and then be Texas bound mid-week.

Speaking of Julianna...the past week at home with my kiddos was A-M-A-Z-I-N-G!!  I'm not sure I can even convey how awesome it felt to feel good and be playing with my kids in our own home, and doing things like taking Julianna to school, and going grocery shopping, and loading and unloading the dishwasher (yes, even that had a wonderful sense of normal that made me smile), and putting the kids to bed at night and saying bedtime prayers, and marveling in all the new things that Will can do by himself (some good, some not so much, lol)...it was all so fabulous.  It has been so long since I felt good while in my own home (my symptoms all returned July 4th weekend) and I stinkin' loved it.  I cannot wait to get home and stay home.

Now that this post has become just a rambling of sorts, I'll put an end to it.  Hopefully, all the appointments I am cramming in will bring some great news...I love sharing good news, and I feel from this point on, there will be lots of good news.  :o)

Ta Da!!

I was going to give tell everyone my incredibly wonderful news, but changed my mind.

KIDDING...please don't go all torches and pitchforks on me...heehee!

So today, I lined up plane tickets for my first chemo next week, put in notice on my apartment for next Sunday & made a bazillion phone calls and changed appointments to be able to go to them while I was there.  And then Dr Z called Joe...and then Joe called me...and this is what he had to say...

They are now POSITIVE I have pancreatic neuroendocrine cancer...that alone would be enough good news...BUT WAIT, THERE'S MORE! 

The trial that Dr Z really wanted me in but that wouldn't open for at least a month, OPENED today and I GOT IN IT!!!  Now this is pending insurance approval for 1 of the meds, but who cares, I will make it work!  I got in the pancreatic cancer trial that is using 2 meds that on their own have had amazing results, and now I will be trying both at once to see if they give an even better result.

HOW AWESOME IS THIS?!?!?!

Last night, part of my prayer went something like this "Dear God, put me in the trial that is best for me.  I would really like in the second one, but know if you want me there, you will do it when you see fit, whether its in 1 month or 10."

He apparently decided I didn't even need to wait a month.  My miracle is happening!  GOD IS GOOD!

Ok, now that you've read my fantastic news, you can all start jumping up and down and yelling.  Oh, you mean only I was that excited???

More Sure Than Ever

Lots to tell!  First off, I am home from Texas!!!!  Its only for a week, but when I go back next week, I'll be packing up our apartment and only staying for a few days.  Here's why...

Yesterday, when I met with Dr Z, he had a number of things to tell me besides what my new trial was going to be.  The first amazing news he had was that they are almost certain they found the primary source of my cancer!  That is awesome because until now it has been a mystery and without knowing the primary source it couldn't be treated very specifically.  Dr Z, the radiologist & the pathologist all agreed on what my PS is...my pancreas.

There are 2 types of pancreatic cancer.  The first is what most people know about (the one that Patrick Swayze had) that has very few treatment options, is very aggressive & doesn't allow much "time" for the patients (Dr Z said the average expectancy of a pancreatic cancer patient is only 4-6 months).  LUCKILY, I have the second (very rare) type.

My cancer is still neuroendocrine, but neuroendocrine cancer (as I just recently learned) actually begins as a normal cell from another part of your body (usually the lungs) that becomes cancerous and moves to a new location in the body.  In my case, some of my pancreatic cells became cancerous and instead of staying in my pancreas moved to my bones and became neuroendocrine cancer.  Until now, I have been treated as though it started in my lungs since that's usually where it starts and we didn't know where it started.  That would explain why I didn't stay in remission and possibly why the first trial didn't work.  Pancreatic neuroendocrine cancer has a standard of care, which means it has a treatment for it!

I am still going to do a trial instead of the treatment, and I'll explain why.  The trial Dr Z really really wants me in doesn't start for at least a month.  And it uses the same drugs as the standard of care for my cancer along with another one.  But he didn't want me sitting doing nothing for a month or more and just letting my cancer grow, so he put me in a different trial (that may also work) and put me on the list for the pancreatic neuroendocrine one.  If my new trial isn't working in 1 month, he'll pull me from it and put me in the one he really wants.  If it is working, then I'll just keep going with it (why quit something that works).

So my new trial only requires 1 day of chemo every 28 days & blood draws once a week (which they already told me I can do here at the Clinic).  The other med in the trial is a pill and I just take it daily at home.  What does this all mean for my traveling?  It means I won't be living in Texas anymore!!!  I will fly there once every 28 days for chemo and then come back home!  I am leaving next week to go down and pack up the apartment and have my first chemo session, it will be a nice short 4 day trip.  When I go back the beginning of December for my next round, I will have to be there a few days also because Dr Z will redo all my scans and tests and see if the treatment improved me at all.  If it did, I keep going with it.  If it didn't, I switch to the new trial (not sure what its schedule is, but Dr Z thought it was a once a month thing also).

I had several people tell me their prayers for the last week or so have been that I would get to come home to my kids (my mom was so disappointed when we found out the last trial didn't work and we might be staying there longer than we thought), this new trial got me home even sooner and lets me stay here longer :o)  So prayers were most definitely answered.  And I have been praying for months and months (almost a year now!) that someone would find the primary source of my cancer and finally someone did.  Thank you God for sending me Dr Z! 

I have been so sure that going to Texas was where I was meant to be and that it would be there that I would find my miracle.  Now, I am more sure than ever.

MY KIDDOS!!

Last Sunday, I wasn't the only one super excited for a long awaited reunion.

I could barely peel Julianna off of me in order to hold Will :o) It was so wonderful to see my kiddos again (it had been over a month and a half!)...I of course was excited to see Joe and my sister too, but seeing my kiddos was the best!

On Tuesday, we all went to the Houston Zoo.  And everyone enjoyed it.  The weather was gorgeous for going to the zoo...only a high of 75!

On Wednesday, we drove to Galveston to see the Gulf, but it was freezing that day, apparently the weather man was wrong when he said 70, because WeatherBug on my phone said 62 and it was SUPER windy!  I did put my feet in the water, but we didn't stay very long.

Sadly, Thursday and Friday were spent at the hospital having testing done and meeting with Dr Z, so we didn't go do anything fun, but we did uphold our Halloween tradition (another post). 

Saturday, morning we went to breakfast and then it was time for Joe, Erin & the kids to load up and head back to the airport.  Julianna was very good about the whole thing until I started buckling her into her carseat.  At that point it was an absolute meltdown, her first, then me.  I knew saying good bye would be hard, but even trying to prepare myself didn't work.  I sobbed like a baby.

I'm holding out hope that when I meet with Dr Z on Tuesday I will have a break before I start a new trial and can come home for a break.  He did also tell me that he will try his hardest to make sure I get to go home for Thanksgiving.  I really like Dr Z :o)

Waitin' on Tuesday

Although I received quite a bit of news yesterday that could really bum a person out, I am far from bummed out.  I was not scheduled to get any of my testing done until next month, but Dr Z is doing some research of his own and decided to include me in it.  That meant instead of waiting 2 complete cycles for my restaging, I would have it done at 1 month.  Thank goodness I did.

The scans I had done on Thursday showed a few things.  It showed that most of my cancer is stable (hasn't gotten worse, but hasn't gotten better either).  It showed that the radiation I had on the tumor on my back (last minute radiation before we came to Texas) almost completely got rid of the tumor, it was barely visible on the scan.  Woohoo!  It also showed that one of my lymph nodes has gotten larger (more cancerous) and a small spot of fluid (not cancer, but cancer related) on my pancreas has significantly increased in size.

So, Dr Z decided that since a few things were getting worse, he didn't want to waste time continuing my current treatment if it wasn't working 100%.  He is currently talking to the pathologist who gave a recent report (he had a few questions for him) as well as a few other doctors (there are some questions about my pancreas) and then he will decide what my next treatment will be and I will find that out on Tuesday.

Until then I am already 1 week into my 2 week wash (the time it takes to get all of the chemo out of my system before they can introduce a new one) and it may take 2-3 weeks for insurance to approve a new trial.  We knew there was a chance going into clinical trials that they may not work and it may take several tries to find one that does, so we're not really shocked or disappointed.  The disappointing part is that our stay here in Texas has now definitely been extended at least another month.  And there is still the chance that depending on what trial I am in I could have to stay down here for all my treatments.

We're praying for a fabulous new trial, quick insurance approval, and a trial that I can also get back at the Clinic.

I'll be posting some fun pictures from this past week with the kiddos later :o)

The "Eyes" Have It!

Although we're still waiting on the results of my spinal tap from last week, yesterday at my appointment with Dr S I found out my eyes are stable.  That means my vision is not getting worse right now and there's no rush to start a treatment.  YAY!!!  Some excellent news!  Also the treatment Dr S was going to suggest for me right now was a once a week IV steroid and it just so happens that I get an IV steroid once a week before my chemo...perfect!  She said that works out great.

It still looks like I do have CAR (carcinoma associated retinopathy), but they haven't been able to identify what antibody I have (my body produces antibodies to fight my tumors and they just happen to also fight my retinas).  She actually thinks I may have a so far unidentified antibody.  Some how it wouldn't surprise me if I have something no one else has ever had!  I could be ground breaking...haha!

Thanks again for all the prayers and good thoughts! Love you all!

A Week...A Month

This is the hardest thing I've done.  Not the dozens of doctor's appointments, or all the scans, IV's & bloodwork, not even the chemo.  Being away from my family is the hardest thing.  It's been a week since I've kissed my husband and a month since I've hugged my kids.  Will was 17 months old when I left and now he's 18 months old.  I've missed Julianna's entire first month of preschool. 

I think I would seriously go crazy if it wasn't for Skype.  I can't wait to see them on the computer every day and hear Will's "mama! mama!" and see what kind of a mood Julianna is in (some days she'll talk my ear off and other days she could care less if she talks to me & I have to pry a conversation out of her).

It gets even harder when I hear that they are sick :o( Both kiddos are on antibiotics, Will because he's on the verge of an ear infection and Julianna because her cold has started making its way into her lungs (surprise surprise...gotta love those preemie lungs).  She's also had a temp the last few days.  This is the picture Joe sent me yesterday...he said she spent almost all day on the couch.

Will however does not let something like a silly cold and ear infection stop him.  He was up and playing all day and watching Toy Story in "Julianna's chair" (one of his favorite seats).  Joe also said he would periodically bring Julianna toys to play with.  Such a sweetheart!

This is also hard on my mom.  She has made the sacrifice of moving to Texas with me.  She hasn't seen my dad in a week and that's the longest amount of time they have been apart in 34 years of marriage.  We're looking at at least 7 more weeks here with the possibility of up to 7 months (if that's the case I may need some volunteers to come live with me to give her a break!)

As far as medical things go, I see Dr S tomorrow and should finally get some definite answers about my eyes and the treatment for them.  I also have my second round of chemo on Friday afternoon.  Its amazing how much less I dread chemo when it isn't as harsh as it was last winter.  I have also ditched the crutches for good!  Woohoo!  And I'm not even walking with a limp!  Now I am working on building up my stamina again.  My current goal is to be able to walk to the grocery store down the street (0.3miles...I know its not far, but I'm a weakling still and I'm afraid I could get there, do the shopping and then not be able to make it back...haha!).

As always, thank you everyone for your prayers, good thoughts & vibes.  Every one of them is greatly appreciated!

Coming Together

Things are finally starting to come together. 

The last 2 days have been really rough.  I started having really bad muscle spasms in my back and stomach (bad as in curled up in a ball crying when they would happen).  I spent all of Thursday night sitting on the couch watching TV propped up by a million pillows because they were so bad I couldn't even lay down in bed to try to sleep.  When I went to my first appointment yesterday, they got so bad Joe had to get me a wheelchair and took me to supportive care (the department that helps patients with pain or any non-chemo related issues). 

I was crying and a complete mess.  They gave me an injection of morphine and an anti-inflammatory while I was there, and after 20 minutes I was feeling much better.  I left with 2 new meds, an anti-inflammatory and a muscle relaxer specific for spasms.  I slept most of the afternoon and evening and then from 9:30 to 5 this morning!  I feel amazing after all that sleep!  And the best part is that I haven't had any muscle spasms!

So my meds have finally been worked out as far as pain goes.  I hate that I am taking so many medications...4 just for pain & spasms (I normally refuse to take meds, I just don't like to take many) but this time I don't care because they are actually working!

I'm excited that we are going to pick my parents up from the airport this morning.  I can't wait to see some family other than through Skype.  My dad is only staying through Wednesday, and then he and Joe will fly back home, but my mom is going to be staying with me for at least the next 2 months.  We are moving into our apartment tomorrow, I can't wait to be out of a hotel room.  The apartment is super nice, but rent is so much higher here than back home.  One of the main reasons we chose it was because it has a shuttle to and from the hospital and to the grocery store (my mom and I won't have a car here).  It's also great because its set up for patients so it is completely furnished and stocked with "everything but your clothes".

I still have to get a spinal tap done (we had to cancel yesterday's appointment due to being in supportive care) and we are waiting on pharmaceutical approval on 2 of my chemo drugs (if we'll get them free, our insurance approved everything except those 2 drugs), but otherwise I am tentatively set to start treatment on Friday.  I'm happy to get started and get this all over with, but I'm not looking forward to months of chemo and being away from Joe and the kids.  We were able to get 2 free round trip tickets on Southwest for me to use anytime between now and the end of December, so hopefully I'll be coming back for visits soon!

All in all things are finally coming together and I am so glad!  Thank you so much to everyone that has been praying for us, sending us love, good vibes, and any other good thoughts!  I still believe this is where I am meant to be and that Texas is where I am going to finally kick this cancer's butt!

This is Where I'm Meant to Be

My last update talked about Dr S and my possible miracle...well, it didn't turn out to be the miracle I hoped for (there had been a teensy weensy itty bitty chance I had been misdiagnosed and had an auto-immunne disorder rather than cancer...too bad that didn't end up being the case!).  But seeing Dr S was still a great thing.  It turns out I have carcinoma associated retinopathy (CAR).

Basically, CAR is the result of someone with cancer producing a certain type of antibody that attacks the retina and eyes, eventually causing blindness (its very rare...go figure!).  The good news is that Dr S is hopeful that since I'm young (this usually only occurs in older people) and it has been caught at a very early stage (I have minimal vision loss so far) that treatment will stabilize my eyes and keep my vision from getting worse.

The bad news is she may want to start treatment right away which means I may not be coming home between my consult & when I start chemo :o(  I'm obviously going to do whatever she wants me to, but it will sure be hard to not come home & see my kiddos. 

I am still in the clinical trial, as long as insurance goes through.  I meet the requirements to get 2 of the 3 chemo drugs free, so I'm hoping for that, then insurance would only have to pay for one of them and my standard of care.  We'll know more this week after another eye consult & testing, a spinal tap, meeting with Dr S again and finding out about insurance.  So, I'll update again when we know more, but I know this is where I am meant to be.

Please keep praying!