Tuesday, November 15, 2011

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.

Monday, November 14, 2011

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...)

Thursday, November 3, 2011

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)