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...

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.

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. 

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 :) 

More on OxyContin

It's now been about a month that I've been trying to wean off of OxyContin, (Oxy) and although I'm able to take a much lower dose than I used to be on, I still experience withdrawal symptoms if I'm late taking a dose.  I am now down to a little more than half a pill per day, divided into two doses.

I spoke to a friend who successfully helped a relative wean off of Oxy not long ago.  With advice from a pharmacologist, they reduced the dosage in small increments and stayed on that dose for three weeks before reducing again.  The overall weaning process took five months!

A few days ago I spoke to the physician's assistant (PA) in my oncologist's office about the need to have an "exit plan" before prescribing Oxy.  It was an interesting, and sobering, discussion.  Although she agreed that such exit plans are sometimes necessary, most patients with metastatic cancer have pain that will never go away and there is no plan to get them off of Oxy...ever.

I will say that Oxy is a great drug for controlling pain because it not only took my pain away, it also gave me a feeling of wellbeing that I've never experienced before.  I would feel warm in the core of my body and relaxed enough that I could sleep if I wanted to. It's very obvious why it is so highly addictive.

I expect that in the course of this cancer journey I'm on, I will need to consider taking Oxy again in the future.  I will do so with my eyes wide open and will likely only choose to go back on it when I know that I will need it forever.  Withdrawal symptoms while weaning are unpleasant and annoying,  but as I see it, the only thing worse is being on a drug that I don't need.  Celebrate with me being pain-free for now and hope it lasts a long time...

Time and the Triad

Early on in my cancer journey was a very scary and confusing time for me.  I was being forced to learn information I didn’t want to know. I had many questions and was so fearful of the answers.  Some questions I asked or looked up right away, while others I decided not to search because I knew I was unprepared for the answers.  A close relative and an old family friend talked or asked about ‘when (I) die’ and ‘how long’ I had, which was extremely difficult and painful to deal with within the first few weeks.  It has now been about 4 months since I was found to have cancer.  I still sometimes feel like I’m in the middle of a nightmare and will soon wake up. 

Four months from diagnosis is a poignant time marker for me.  One of the questions I searched, with great trepidation several weeks after my diagnosis was established, was “How long do people with stage 4 adenocarcinoma of the lung live?”  I found two answers online.  One online source said, “Six to 12-months” and another said, “The median life expectancy is eight months,” meaning that at eight months after diagnosis half the patients are alive, the other half are dead.  Being at four months feels like being somewhere around ½-way to these online predictions. 

No doubt, these past four months have been, physically and emotionally, the most difficult months of my life.  Not only have I been through the wringer, but my illness and treatments have put everyone close to me through the wringer, too.  It continues to be so painful to watch my husband, children, mother, extended family and friends walk this journey along side of me. 

However, despite the deadlines I found online, (pun intended), I don’t feel like I’m halfway to the end.  I feel healthy and strong enough to go on for much longer.  My oncologist has always talked about being in treatment in terms of years…not months. He tells me that with the new treatments now available, life expectancy for patients like me can be measured in years.   

These past four months have also demonstrated to me the power and strength of the mind, body and spirit triad.  I’ve always felt the need to nurture each component, equally, because I feel they are all equally important to being a healthy, well-balanced woman.  What I have learned during the first four months of my journey is that having nurtured all parts of the triad and working to try to make each part as strong as possible, when one component was letting me down…my body… the other two parts were able to step in to assist.  At a time when I was so worried that my body was going to fail me all together, my mind and spirit told me that I needed to face my cancer challenge, head on.  My mind and spirit reminded me that my fight wasn’t just for me, but also for Wynn, Nathan, and Nina.  My mind and spirit reminded me that I still have unmet dreams.

I'd really hate to jinx myself by saying that my body has been feeling stronger the last couple of weeks.  This strength brings energy, and relief, to my mind and spirit, (which have been working overtime lately.)  Although I won’t know for sure until my next CT scans, I believe my oral chemo is helping me move toward the mind, body and spirit balance I always want.

Still Trying

Ten days have passed since I blogged about trying to get off of Oxycontin.  Unfortunately, I’m still working on getting off of it.  My doctor continues to make suggestions and encourages me to wean slowly...very slowly.  It takes patience, which I don’t have much of. 

This past weekend my dear friend, Brigid, and I went to Austin, TX.  I was really feeling the need to get away and have never been to TX.  Since my diagnosis in December, I’ve hardly been out of my suburb.  Austin has a great music scene and inexpensive, good food.  The most appealing part of Austin was the warm sun.  The Chicagoland area has had a cold, wet spring.  I usually don’t complain about the weather much, but having cancer and going through bouts of withdrawal are leaving me chilled to the bone.  It was in the high 80’s and a little humid in Austin, which felt amazingly good.  We sunned, pool-side, walked along the Colorado River, and relaxed.  The flight down to TX was challenging.  I got sick a few times and am so grateful that Brigid was with me.  She’s a real trooper and a great friend.  Once there, everything else went smoothly, including the flight home.  Wynn and I are planning a week vacation soon and this quick getaway gave me the confidence that I can actually travel and nothing bad will happen.   

My next CT scans are scheduled for the first week of May.  These are the scans that will let my doctors and me know if the oral chemotherapy I’ve been taking for the last 6 weeks is working, or not.  I was so nervous about my first set of scans, which told us that the chemotherapies I was initially on weren’t working.  You can imagine how nervous I am about this next set.