Tuesday, May 28, 2013

First Day Back

OK...so it's been six months since I last stepped foot into the gym, but today I did it!  I've been thinking that I needed to get back into a workout routine before my fatigue totally took over and I would never go back.  

This morning when I decided that today was the day, I, as usual, felt exhausted.  I could have easily talked myself into putting it off for another day.  Before my diagnosis, I'd often go for a workout then come home and take a short nap.  Today I decided to try something different.  I took the nap before going to workout.  

It felt great to be there again.  Although I saw familiar faces,  there were some machines, etc. that have been moved around since I was last there, so I had to search for my favorites.  

Surprisingly, I got teary-eyed as I started my workout.  I was so grateful to be able to be there.  I have been consistently hopeful that I would get strong enough to return to the gym, but after months of dizziness, nausea, vomiting, fatigue and generally feeling like crap, even my "pollyanna" hope was taking a hit.  In the few months since I started Xalkori, most of the side effects have eased or gone away.  Now it's really only the dizziness [which goes away 1-2 hours after taking the pill] and fatigue that bother me, and who knows if the fatigue is because of Xalkori or because I have stage 4 lung cancer.  Early on, back in December, a prominent oncologist told me that if I "let the fatigue take over, it will take over."  He made me feel like I could help myself by staying active.  

With that in mind, I put in an hour today, and plan to get into a regular routine.  The body-portion of my mind-body-spirit triad has really taken a beating, not only from cancer, but also from all the medications, x-rays, etc.  I'm hoping that I'll be able to work on my body again so that all parts of my triad can be strong again.  

Wish me luck...

Sunday, May 19, 2013

Help With Oxy Weaning

It's a strange thing...at this time in my cancer journey, I feel like I may be having more symptoms from withdrawing from OxyContin/oxycodone than from my cancer.  As of this week, I’m down to 10 mg of OxyContin/oxycodone, (oxy). About 10 days ago my friend, Debbie, said to me, “You know a lot of people…don’t you know someone that can help you with getting off of it?”  I then remembered that I have a childhood friend, W.H., who is a Pharm.D. at a large medical center in St. Louis.  W.H. and I have been dear friends since grade school and I don’t know why I didn’t think of him sooner.  I kept thinking I needed to consult someone in the detox or pain management fields.  Since I contacted W.H., he has given me his professional advice and a weaning schedule, all wrapped up in friendship.  I, once again, am so grateful for the support I have around me and have learned a few things:

OxyContin is the extended release version of oxycodone. The dosing for oxycodone is one pill every 4-6 hours to control pain, while OxyContin only needs to be taken every 12 hours.  OxyContin releases the medication into our system slowly by way of a unique outside coating. Users should never chew, cut, or crush an OxyContin pill, because the entire dose would be received immediately, which in some cases, could be a lethal dose.  So, the first thing W.H. told me was to never cut an OxyContin pill, as I had been doing for the past several weeks. 

I also learned that Asians are particularly sensitive to opiates.  In the future, if I need to restart OxyContin or oxycodone, I’ll ask my oncologist start me on a lower dose. 

W.H. had me switch to the immediate-release form, oxycodone, which is not only safer than shaving off pieces of OxyContin with a razor blade, but will also allow me to reduce my intake more easily.  So now I’m taking 2.5 mg, 4-times/day.  I’ll do this for a week, or so, then reduce to 2.5 mg, 3-times/day, and so on.

Now that I’m on such a low dose of oxycodone, I’ve realized that I’m not as ‘pain-free’ as I thought I was.  (A real bummer.)  Although it’s mild, I have some bone achiness that I thought I didn’t have.  I’ve been taking ibuprophen (Motrin) to manage my pain sometimes…but not often. It’s a little disheartening because I really thought that the new oral chemo was working in all ways.  So my new hope is that, with time, the new oral chemo will also take away my bone achiness. 

A few of months ago I started taking advantage of the Cancer Wellness Place in our suburb. Every two to four weeks, I meet with a cancer counselor, Kathy, who I find so helpful.  Along with being a counselor, Kathy is a nurse and has personal experience with the loss of her husband to cancer.  Going to see Kathy is part of balancing the mind-body-spirit triad I mentioned a few blogs ago.  Kathy asked me an interesting question the other day, “So what’s the psychology behind needing to get off of oxycodone?”  Given that I still have some pain, I could choose to stay on oxycodone, instead of going through the long, (and sometimes painful), weaning process and then taking ibuprofen.  She also asked, “Does it make the cancer seem less severe if you’re able to manage your pain with an over-the-counter medication?”  The answer is yes.  Not only do I not want to be on a narcotic, I feel like my disease is less severe if ibuprofen takes care of my pain.  Although I have no idea how well Xalkori will work for me or for how long, for now I like the idea that I may be moving toward control of my cancer.  I’d love to have total control of this disease, but that seems unlikely.  So I continue to Keep Calm and….you know.

Tuesday, May 14, 2013

Charleston and Savannah

     If you've never been to Charleston, SC, put it on your bucket list. Wynn and I had a wedding to go to in Savannah, GA so we went a week earlier and spent five days in Charleston first.  The city is rich with early American history, (slavery, Civil War), beautifully preserved buildings , (homes and plantations), art galleries and amazing food.  Wynn's brothers, (Michael and Bruce) and their wife (Debbie) and significant other (Tracey) joined us there. We didn't enjoy a lot of sunny days, but we did enjoy spending time together. I'm the one all bundled up...cancer often makes me cold.

     For some reason, I naively thought that native Southerners would be somewhat sheepish, or even embarrassed, about their history of slavery.  Although I wouldn't characterize the feeling as "pride", I definitely got the sense that Southerners certainly aren't ashamed of their slavery past. They're very matter of fact about it.  This was my first trip to the "South" and I learned so much.  Being a Northerner all my life, my sensibilities on the subject are so different.  It was good to learn about another perspective, despite feeling like I was on another planet. The walking tours, house and plantation tours, and museums, (slavery, Civil War, etc.) were great.  

      Unexpectedly, we found ourselves surrounded by great restaurants.  It turns out that Charleston is a well known destination for good food...just not known to us.  Some restaurants were fancy and expensive, while others were down-home cafes that served fried green tomato sandwiches, grits and stewed okra. Seafood choices were abundant, fresh, and prepared both traditionally and in new and unusual ways.  Although sometimes a little on the rich-side for me, (many dishes are fried and served with creamy sauces), we really did enjoy eating our way through the city. 

      Savannah is an equally historic city.  The city trolley tour was fun and interesting. Because we were there for a wedding, we didn't get a chance to experience as many restaurants.  The homes in the historic district are amazing and the tree-lined streets are beautiful. We had a great time at all the wedding festivities and spending time with friends. 

Tuesday, May 7, 2013

It's Working!

Earlier today I had a series of CT scans, (chest, abdomen, and pelvis) to see if the oral chemotherapy, (Xalkori), I've been taking for the past 8 weeks is working.  I am thrilled to write that my oncologist called me tonight to let me know that the tumor in my lung is about half the size it used to be and the tumors in my liver are all shrinking.  The mets to my bones are about the same, and certainly are not worse.  My oncologist said that it is not unusual for bone mets to take a little longer to respond to chemotherapies.  He is very optimistic...and I am too! 
Since there is little data about Xalkori use with ROS1 mutation patients, we have no idea how long it will work for me, but for now, things are all going in the right direction.  My liver enzymes are back to normal and other labs are also headed in the right directions.  

Wynn and I traveled to Charleston, SC and Savannah, GA last week. Despite cloudy skies and some rain, we had a wonderful time.  I'll write about our trip soon.  Just wanted you all to know my good news tonight before I went to bed. I was so nervous about these scans that I hardly slept last night...tonight I'll sleep better :)