Wednesday, August 31, 2011

1 Step Forward, 2 Steps Back

Yesterday was a bit of a surprising day for us.  Starting last Thursday, I began having some pretty bad back pain.  It was muscle aches and pains because I could feel all the muscles tense up.  I had a knot the size of a baseball form on the left side.  I assumed it was because I am now walking on my left leg and using muscles I hadn't used in 6 weeks. 

After a few nights were I was in so much pain I didn't sleep at all, a call was made to Dr H to see if he could prescribe me some kind of muscle relaxer.  He wanted to see me first and re-evaluate all my meds, so we made the trip to see him yesterday.  After he looked at my "knot" he ordered a STAT MRI to rule out a tumor before prescribing me anything.

About an hour after my MRI I got a call from Dr H.  The "know was not muscle, it was a tumor.  Not only do I have a rather large tumor next to my spine, but it is rapidly growing and the cancer was spreading from just my pelvis up my spine.  And did I mention the reason it was so painful is because it resting on a nerve that comes off my spinal cord and wraps around my waist to just above my bellybutton.  What's up with these tumors sitting on nerves?!?!?!  Not a fun afternoon.

Since we already have everything booked for our trip to Houston, the plan of attack for the tumor had to be quick.  So today I met with my radiation oncologist, Dr L and he mapped out a treatment plan And I start radiation on it tomorrow afternoon (in addition to the radiation I am already getting).  We are going to pack the whole treatment into 5 days, I'll get my last treatment the morning we leave for Texas.  Both Dr H and Dr L believe that radiating this tumor will have the best effect.  If it were to be allowed to continue to grow it would begin compressing my spinal cord which would be very bad.

Once again, pain has saved me from what could have been a much worse situation.  Although, I would really like for a different symptom next time I need tipped off about something.  So that is why my Tuesday was so bad.  I feel like I take one step forward and cancer kicks me and sends me back 2 steps.  I truly believe that I will frond the answers I am looking for in Texas.  And I am very eager to get there and see what they have to say.

Monday, August 8, 2011

Questions Answered & Second Opinions

We just got home from seeing Dr H (my oncologist).  Today's appointment was long!  A few different things were accomplished, I had blood work done (there are lots of levels that are a little low), I had a bone building treatment done, and a lot of questions were answered.  The questions weren't all ours though, my parents and Erin went with us today.  They all had lots of questions that Joe & I couldn't answer, and we thought it would be best to just have Dr H answer them.

A few of the new things we learned today are...

*NETS does not usually respond to chemo...WHAT?!?!?!?!  Are you as confused as we were yet?  When I was in the hospital for my surgery, my roommate also had NETS and she was told she would not get chemo because NETS doesn't respond to chemotherapy.  My mom just happened to mention that to Dr H today and he looked at her and said "that's correct, it does not".  He went on to say that when he discussed my case with other doctors back in December he was basically told "good luck" when he said he was going to do chemo.  But for me it worked!  We now know that it did not completely work (my cancer is back), but it worked to the point that I am still alive, my cancer is not as bad as it was last fall, and that it kept the cancer from spreading to anywhere other than my skeletal system.  I have NETS in the most unusual way (Dr H reminds me how rare my case is) and it responded in an unusual way to chemo.  God is truly at work.

*As of right now, I will be doing chemo again.  I am scheduled to get a port (YUCK!!!) and start 3 new chemo drugs in 6-8 weeks (once I am healed from surgery and have recovered from radiation).  I am not looking forward to more chemo.  My hope is that after radiation when I get a repeat PET scan that it will show all my tumors are gone and I won't need the chemotherapy!

*Dr H also suggested I get a second opinion.  He said he encourages all his patients to get second opinions (I was in such desperate need of treatment last December it was never brought up).  He also said that because I am such a rare case, he would really like more opinions on treatment options and such to make sure he is making the best decisions.  So as of right now, we are planning on getting a second opinion and are looking into 2 options (one is in New York City and the other is in Houston, TX).  Dr H suggested both hospitals and Erin had actually mentioned both to us previously about possible second opinions.

So, what are we going to be doing over the next 6-8 weeks?  I have approximately 2 more weeks of surgery recovery before I can start radiation (if I can travel we'll get our second opinion during this time), then I will have 2 weeks of radiation therapy, and then 2-3 weeks of recovery from radiation (if I couldn't travel earlier then this is when we'll get the second opinion), then a PET scan and I'll start chemo.

And what can you all do over the next 6-8 weeks?  Pray!  Please pray lots and lots for me, our entire family, for the doctors that will be looking at my file soon, for tumors to go away, for blood levels to return to normal, and for the radiation to finish off what is left of the tumor in my pelvis.  Whew!  That's quite a list :o) 

Thanks again to everyone that has prayed for us, brought us meals, and has watched our kiddos!  You are all amazing people!