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!

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!

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.

Past Due Blog Update

So, I am way past due on updating my blog, and a lot has happened since my last post.  The amazing trial I was so excited to be part of turned out to not work for me.  2 weeks ago my scans showed small amounts of growth in my tumors, but Dr Z couldn't be sure of the growth was before or after I started the new chemo, so I was to continue with the chemo for 2 more weeks & then re-scan.

During that 2 weeks, I became very sick.  I had terrible stomach cramps that doubled me over in pain and I was constantly nauseous.  I could barely eat or drink anything.  I ended up in the ER on December 7 for the pain and for dehydration.  Dr Z decided then to have me hold my chemo meds until I came down to Texas to see him (about a week).  Once I stopped the meds, my stomach issues went away almost immediately. 

This trip my dad came down with me.  I had my scans on Thursday, and when we met with Dr Z yesterday he told me the trial was not working.  All of my current tumors have gotten larger, my lymph nodes are larger and I have some new tumors that have popped up.  So, I have dropped out of what I believed was going to be my miracle trial.  Now I am not discouraged, I still believe I will get my miracle, I just may have to wait a little while longer.

What's the plan now?  I am going to be doing a more standard chemo regimen, not a trial.  I have had 2 of the 3 drugs I am going to get before.  One is carboplatin, which I had last spring and we know has an effect on my cancer.  Dr Z's current thought is that by doing a treatment we know will have a positive effect we can improve my status and then try another trial later on, rather than try another trial now and possibly let my cancer continue to get worse if it doesn't work.  I completely agree.

One awesome thing about going with just a general chemo treatment is that I will be able to receive it in OHIO!  I will still be under Dr Z's care and will have to come back to Texas every 4 weeks or so for scans and a check-up, but will spend most of my time at HOME!  I am incredibly excited about that!

So tomorrow I say good-bye to my Houston apartment when we leave for the airport and I won't be returning to it  :o)  It has been great spending time with my dad this trip and I'm glad he was able to come.  I think it may be a battle from now on who gets to come with me...its like a mini vacation for my family members...haha!

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.

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!

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)

Making Plans

I hate making plans when you really have no idea what's going on, but that seems to be the way things go around here.  So we've started making plans. 

We will not be flying home on Saturday like we had originally planned.  I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning.  I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP.  Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free).  At that point I will probably start my treatment next week.

So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do.  My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work.  We've extended our hotel stay and our rental car.  We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months.  And we need everything solidified before next Wednesday when Joe and my dad will fly home.  We're making these plans in the hopes that everything doesn't fall through.

Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses.  That means I have very little vision loss so far.  Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.

Some other possible good news  happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could  be home for them!  I would just have to fly out here the beginning of each cycle to be evaluated.

And so we keep making plans, not really knowing what exactly is going on.

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!

Miracles on the Horizon!

There is still so much I can;t tell you right now, but here's what I can.

As of right now I am scheduled in a clinical trial!  The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved.  Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week.  Then back for 3 weeks off for 1.  This would be for at least 4 months.  That's a lot of time away from home :o(  But we've alreafy started coming up with a plan if thats the way things go.

Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer.  To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist.  But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House"  We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it.  She found out I am having a lot more vision issues than I thought.  I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found  out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.

So what does it all mean?  She had me go get some bloodwork today to check for a host of things no one has ever checked for.  She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!).  Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight.  Miracle #1!  My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight!  Best case scenario I don't want to share just yet.  It has a slim to none chance, but I am holding out hope for the chance.  Let's just say it would TOTALLY change my life!  And by totally I mean its HUGE!

Right now, we're basically "on call"  We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be.  But it all hinges on Dr S.

Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!!  One less surgery!  I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!!  But again the biggest news of the day was Dr S possible new theory.  Its killing me not to share, but we want to wait until there is actual news to share.

On a kiddo note...I MISS THEM!  We skype with them every night before bedtime and it has definitely helped...at least me :o)  Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart.  But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!

Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day.  I really hope when we get back we'll be able to keep clothes on him!  Haha!  Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more.  I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!

Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know.  But in the meantime, pray like you've never prayed before for Dr S and my miracle!  Thanks everyone!

*sorry for any typos, I'm typing in the dark while Joe is sleeping.

Hello Texas!

We arrived safely Thursday afternoon, after a few mix ups which included almost missing our plane(even though we were at the airport 3 hours early!) because the gate changed at the last minute, arriving at a different airport than Joe thought (we came into Bush and he thought we were coming into Hobby) and trying to get a rental car since we were at a different airport.  But everything worked out and we are here!

We met with Dr Z for my consult today and basically he scheduled some testing for me on Monday and I will see him again on Tuesday to hopefully get a plan of action.  He did say some things that sounded promising (about my health and type of cancer), but I'm not going to share until I know more and understand them for sure.

So Joe & I have the weekend to have fun.  We're not sure what we're going to do, maybe some museums or something (since I can't do a ton of walking yet).  I keep telling him this is our honeymoon.  Haha!  When we got married, we didn't go on a honeymoon, instead we took our money and bought our first house.  At the time, it was an excellent decision and we were so glad we did it.  We promised for our 5th anniversary we'd take the honeymoon we missed.  Well, this year was 5 years and life had other plans that didn't include an exotic getaway.  Even though this trip doesn't include a beach, or room service, or romantic settings, but rather hospitals, testing and lots of paperwork, it is our first trip without the kiddos.  Every chance we get we comment about how much we're enjoying our honeymoon...heehee!

And speaking of the kiddos, thank goodness for Skype!  Julianna has skyped with us several times each day.  Today she AMAZED me and went through all her alphabet flashcards out of order and got them correct!  She's such a smartie and I'm so glad I'm not missing out on anything while we're here!  We also got to say bedtime prayers with her tonight which was wonderful!  Will also loves to chat with us, mostly just blowing kisses :o)

I hope I'll have more info for everyone soon (and really good info at that!).  Please keep saying prayers, I really believe I am meant to be here right now and that my miracle is just around the corner!