Thursday, October 27, 2011

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.


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???

Wednesday, October 26, 2011

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 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.

Sunday, October 23, 2011


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)

Saturday, October 22, 2011

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)

Friday, October 7, 2011

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!

Wednesday, October 5, 2011

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!

Monday, October 3, 2011

What's Been Happening

I know its been over a week since my last post, but I have been one very busy girl!  My mom and I are all settled into our temporary home.  Its a cute little apartment that has everything we need (except for groceries and our clothes).  Its also fabulous that it has a shuttle to the hospital.  If we want to go anywhere other than MD Anderson though we have to take a cab, and they are not cheap!  So we have tried to limit our cab rides.  Here's a few pics of our temporary home :o)

Our kitchen

The living room

The dining area and door to our balcony

Without having a car here we've had to find some alternatives for getting things we need.  Amazingly, we found a grocery store that delivers!  You place your order online and then pick a delivery date.  Even better is that they were having a special we were able to get that means we'll have free delivery for the entire month of October.

As far as the medical aspect of our stay goes, I had my lumbar puncture (spinal tap) on Thursday and it wasn't bad.  I barely felt a thing, thank goodness!  I was pretty worried about it.  Unfortunately, one possible side effect of it is back pain, and that just happens to be the only side effect I'm experiencing, but add that to my current back pain and I had a pretty miserable time.

I had 2 days this past week where my mom and I spent more than 13 hours at the hospital.  The first was Tuesday.  My blood counts were really low (due to the cancer being in bone marrow again) and I had to have a blood transfusion.  We got to the hospital that day at 8am and left at 9:30pm.  I started my chemo this past Friday and that was our second extremely long day (7:45am-9:15pm).  My third drug was finally approved thanks to Dr Z changing the wording in my diagnosis just slightly.  I will have chemo each Friday (only 1 day a week) for 3 weeks and then have the 4th week off.  Then the cycle repeats.  There is no set time for how long I will get this chemo.  Since its a clinical trial, they are still working on finding correct dosage and length of administration.  The hope is that with cooperation from the Cleveland Clinic I will be able to come home and receive treatments there after my first 2 cycles.  I would still need to fly down here once a month to see Dr Z, but that would mean I could be with my kiddos rather than staying here in an apartment.

I was excited to learn that the drugs I am getting this time (although still very strong) are less harsh than the ones I got last winter.  They have fewer side effects (I haven't had any so far...fingers crossed!), and the side effects they have are not as severe as the ones from the drugs I had before (no risk for hearing loss, hair loss should be minimal, nausea is less severe, etc...).

I am still doing testing for my eye sight.  I see one more specialist tomorrow ( a retina specialist) and then hopefully will finally have a definitive diagnosis on my eyes and a plan for treatment.  Dr S has been working with a doctor at the Mayo Clinic for my case.  They apparently found a certain antibody in my blood that is caused by cancer and it affects the eyes (this is my understanding so far) and this particular doctor is the one who discovered this antibody so he's an expert.  I am hoping to know more when I meet with Dr S on Thursday.

This week is another busy week with appointments every day except Wednesday.  I feel great after my first round of chemo and I am praying that continues!  I'll keep everyone updated.  :o)