It's Not a Sprint

Hey all

Quite a lot has happened in the past few weeks, culminating in some excellent news, which I’ll go ahead and share.  My primary oncologist has been very happy with the latest CT scans and has classified my case as “well-managed.”  I honestly can’t remember what I was previously classified, but it must have been lower than well managed.  But I do know it’s a good category to be in!  She called on Monday to tell us that and we were ecstatic.  I’ll remind everyone that I have two tumor sites that have been the primary concern for the last 6 months:  1) the lung tumors, which cause all the chest problems and 2) an almond sized tumor on the base of my skull near the left back – not in the brain – an important distinction! The bottom line is that the chemo has been working its magic; both the lung and head tumors have shown no growth since the end of the last cycle (Apr 2).  Getting here, though has been experiential.

After the last episodes (chest tube, pneumonia), I started feeling better to go back to work full time beginning on May 6th.  I was really excited to get back to the lab.  I went in all week, getting back into the swing of things and feeling really good about the future.  It was finally looking up and maybe I was finally seeing the chemo in the rear view mirror.  Mother’s day weekend, though, I started getting sick and throwing up twice a day.  This was unusual, considering how good I felt.  I told the doc and she said take some more anti nausea meds.  I have been on blood thinners due to a chemo induced blood clot in my leg.  For those who are not familiar, getting on blood thinners takes some calibration, which includes two drugs during the first month or so, then staying on one drug for as long as needed.  I think I was a little overdosed on both drugs that weekend I was sick.  When I went off the other drug, I immediately felt better the next morning.  Anyway, another sick weekend (also Mother’s day! Sorry Jenn!).

So the Tuesday after Mother’s day, I was feeling strong, somewhat stable on the blood thinners and felt like going to work again.  Whoo hoo!  It was not to be.  I got ready, excited to be feeling well, jumped into my car and began the drive in.  About 2 miles from our house, I realized that my vision was not right.  My eyes were not responding as fast as they should have been.  I briefly considered powering through, but decided on the safe route, turned around and went home.  A significant down on the emotional roller coaster.  Something with my vision could only mean my head tumor was up to something.  I got home and told Jenn about it.  Throughout the day, I realized that my vision was becoming double again much like it had been in December.  It turns out that the tumor is located in a very close proximity to a bundle of nerve fibers which run up to my eyes from the back of my head.  Logic told me that since I hadn’t been on chemo for 5 weeks, the tumor must be growing, and pushing on those nerves subsequently causing the double vision.  Grrr!!!  Just when things were looking up (pun intended.)

I stayed home that Tuesday and woke up the next morning with my vision impaired even a little more.  My doc scheduled an MRI to determine if the tumor was growing.  I  decided on Wednesday to have Jenn drive me to work instead of sitting around the house feeling sorry for myself.  As long as I could focus on close up objects, close one eye occasionally, and sit still, I would be okay to do some experiments.  I was getting determined to not lose the momentum I had established the week prior.  Jenn agreed as well.  We got in the car and started out, but cancer would prove to be the ultimate snake in the grass again!  As soon as we made a left turn, I felt an overwhelming dizziness, numbness throughout my body (not just on one side), and almost felt like fainting. The experience was surreal.  I could look at my hands and see them but they didn’t seem like they were in front of me.  Surprisingly, though I did not feel nauseous.  I told Jenn to stop the car.  I could talk and listen, but I knew something was not right in my head!  Ahhh!!!!  Not only extremely discomforting, but another complete surprise symptom.

We went home and I sat for about 20 minutes.  The feeling subsided and I decided to stay home and just sit.  I didn’t need any fainting spells that day.  I was feeling okay and Jenn decided to run some errands.  We agreed that if it happened again, we would call 911 so she wouldn’t have to deal with me in the car.  Of course, while she was out, it crept up on me again.  The second time was not as bad as the first, but I definitely knew something was wrong and probably needed immediate medical attention.  Jenn got home and we called the doctor and 911.  The doctor prescribed steroids to help with the vision issues.  And the 911 call allowed me to ride in an ambulance!  That was fun. Although, it must not have been much of an emergency as the driver didn’t turn on the lights.  I must comment that the ambulance crew were incredible.  They stayed with me the entire time, took me to Vanderbilt ER and ensured I was cared for every step of the way.  The driver even said a prayer for me that I will never forget.

Once I arrived at the ER, I had a third and final episode which was the worst.  I coughed up some blood (grrr…. lung tumors still bothering me?) and I felt just completely weak.  Fortunately, having the episode in the ER moved me up in the MRI line.  I had the scan and the hospital admitted me overnight for observation. What a day!

Thursday, I felt much better, had not had a dizzy spell, and I realized the double vision was improving.  Steroids are amazing!  We also received the news that the MRI showed no head tumor growth which was great!  My doctor and I agreed, though, that radiation, instead of chemo, was a viable alternative for the tumor in my head to prevent any more double vision.  We had discussed this in December, so it was not a surprise.  Really it is just the next logical step.  The chemo has worked its charm on my lungs, and now addressing the tumor in my head was next.  I met with the radiology folks both in the hospital on that Thursday as well as this past Monday.  They explained it very well.  Based on the MRI, they believe that the tumor is pressing on those nerve fibers I mentioned and that if it can be destroyed by radiation, I should have no more double vision issues.  So tomorrow (Friday 24 May) I’ll have a zoomed-in MRI of the tumor in my head.  If the radiology folks determine that the tumor is a viable candidate for radiation, they will then plan the treatment, which will last about 5 days overall, about 30 minutes each session.  Side effects and risks are very minimal.  And it’s about a 5 minute (convenient) walk from my lab.  Considering the alternative would have been more chemo (the arch nemesis!), radiation sounds like a walk in the park!  If all goes well, I should be starting treatment in a couple of weeks.  If the chemo was intended to destroy as many lung tumors as possible, then getting the head tumor under control with radiation is just another tweak in the process and I view it as progress toward a minimal symptom life.

We received some other good news this past Monday too.  On Saturday, I had a CT scan of my chest to check the lung tumor progression since the last chemo session.  That’s when my oncologist said that I’m “well managed” and my lung tumors are not growing any.  There is one tumor that may have been the culprit during the ER visit when I coughed up so much blood.  But the steroids seemed to have helped out.  I haven’t coughed up any since; I haven’t had any more vision problems, and I haven’t had any more dizzy spells.  My doc said that if the lung tumors give me any more immediate issues, radiation is a good alternative for that as well.

So right now it looks like it’s going to be a good start to the summer.  Jenn and I are very encouraged by all the news we’ve received.  While I’m not in remission, the tumors are not growing.  And that’s the kind of response we like to hear.  We completely understand if things take a turn and the lung tumors start growing again.  But with the radiation possibilities, I’m hopeful the summer will be chemo free!  I’ve been back to work this entire week, walking much better in my prosthesis, and feeling much stronger every day.  My stamina is returning and for the first time in a long time, I actually think we’re starting to come out on top of cancer!  And to TOP it all off, my hair is growing in again!

I hope everyone is doing well!  I will update as the radiation treatment becomes more solidified.  Thanks for keeping up!

Hunter