Monday was the first round of Maintenance Chemo.  I will continue this treatment plan for a season.  During this stage of treatment Dr. Saroha and I will be monitoring how I feel, signs of active cancer and any indication of “relapse”.  When there are any signs of active cancer we will return to some form of more aggressive treatment.  My prayer is that we can avoid that reality for a rather lengthy period of time.

LANGUAGE MATTERS

Last Friday I met with Dr. Saroha and we talked over options and ended up choosing to enter the maintenance chemo season of treatment.  As we were talking about my cancer he used the word “remission”.  “Remission” is a word I was told never to expect to hear.  When he spoke it I was taken by surprise and did not say anything.  We were in the midst of making big decisions on the future of my treatment.  The word was spoken, hung in the air and then was quickly passed over as we made life altering decisions.

A few days later I could not escape his use of the word.  What did he mean when he spoke it?  I know what I have always taken it to mean when someone with cancer shared that they were in remission.  How could this be when I was clearly told to never expect to hear such words in my case?  I needed answers.  Email is awesome.  With a quick note to Dr. Saroha I had my answer in less than 24 hours.  I thought I would share it here.  I think it is helpful to understand how some of those who care for us use language and it speaks clearly to my condition.  Here is his response:

Unfortunately, “remission” is not a well defined medical term and we do use it variably during discussion about cancer. There are two common scenarios that you may hear it used-

1) Cancer was treated, there is no evidence of cancer currently, patient may be cured but we won’t know for sure for a few years, so we may call it “remission” until we can call it cured or the cancer returns. This would be the situation with an early stage colon cancer that was resected and then patient may have had chemo for a few months afterwards.

2) Cancer was treated, there is no evidence of active/progressing cancer (but there likely is some cancer in the body), plan is observation (no chemotherapy) or maintenance/low-dose chemotherapy until we see progressing/worsening cancer, so we may call it “remission” until cancer gets worse (called “relapse”).

I used it in 2nd context. Although, I certainly would like you stay optimistic (rarely these “remissions” can last years and as you know, miracles can happen!).

While I certainly would have liked to have been in the 1st context I am glad we can say “there is no evidence of active/progressing cancer”.  Our plan of low dose chemotherapy should keep any cancer from growing for a season.  My prayer is that I stay in this stage of “remission” until someone comes up with some new treatment which will move me closer to a cure.  I love Dr. Saroha’s closing words, “miracles can happen”!  Amen, Amen and Amen! [Read more…]

“Hey Dan, I have an opportunity for you.”

This was how many of our conversations began.  Over time I learned to laugh and beat him to the punch.  “So, what opportunity do you have for me today?”  Walt was one of those happy, easy going guys who had the gift to see the positive in every situation.  Even the worst of times was an “opportunity” for someone to learn something new, to grow, to rise above expectations and do great things.  The truth.  Walt knew every “opportunity” was a moment for us to remain faithful, do our best, and then watch as God showed up to redeem and transform a difficult situation.

I was a young man when I worked with Walt and Carol.  I learned a lot.  Above all I learned that even the most difficult of situations is “an opportunity” to see God at work.

I thought of Mr. Opportunity this morning when I read my devotional.  I want to share it with you here.  It comes from Sarah Young’s “Jesus Calling.

Every time something thwarts your plans or desires, use that as a reminder to communicate with Me.  This practice has several benefits.  The first is obvious: Talking with Me blesses you and strengthens our relationship.  Another benefit is that disappointments, instead of dragging you down, are transformed into opportunities for good.  This transformation removes the sting from difficult circumstances, making it possible to be joyful in the midst of adversity.

Begin by practicing this discipline in all the little disappointments of daily life.  It is often these minor setbacks that draw you away from My Presence.  When you reframe setbacks as opportunities, you find that you gain much more than you have lost.  It is only after much training that you can accept major losses in this positive way.  But it is possible to attain the perspective of the apostle Paul, who wrote: Compared to the surpassing greatness of knowing Christ Jesus, I consider everything  I once treasured to be as insignificant as rubbish.

[Read more…]

It was a Monday

Have you ever had one of those days?  The kind of day where no matter what happened you felt like you were behind and underwater.  Monday was a Monday of all Mondays.

I woke up tired.  Sunday had been a busy day and my body felt weary.  I was tired and I knew it.  My energy level was low and I could tell there was little chance of it getting any better.  I have learned that on days like this I am much more sensitive to everything.  My emotions are near the surface and things I can normally manage to overlook set me headed in a bad direction.

For example, at lunch I could not open my 1 liter sprite bottle.  The neuropathy was bad and I had no strength.  Nancy came to my rescue but it was frustrating and in many ways humiliating.  Later in the day I tried to open a package of gum.  My fingers would not work, I could not feel the wrapper to pull it off so once again I handed it off to Nancy…I am glad she is around.

I need to get a scan this week.  The insurance company and hospital were not communicating well.  We had tried to “help them” communicate most of last week to no avail.  Nancy called the oncologists office this am…they had not heard any news and would make a call on my behalf.

My neuropathy is not getting better.  In fact it is slowly creeping up my arms and legs.  My arms and legs are numb just above my elbows and knees.  I called my oncologist and they decided to put me on yet another medicine to help with the neuropathy.  The only side effect, “it will make you tired.”  “Yeah, just what I need…something else to make me tired.”  I am not sure I will take the medicine.  This may be one of those things I tough out just so I do not have to deal with the side effects.  I am not eager to put more drugs into my system.

The oncologist’s office called.  They arranged for the scan!  Only thing is I needed blood work before I could have it done.  Drop everything and run to the office to have the blood drawn.

Now I can look forward to Barium…love that stuff.  It was one of those days.  I wanted to stop and start the day again.

FROGS

I walked into my oncologists office and found this sitting behind the receptionists desk!  I just started laughing.  The kind of laugh that comes from deep within and allows you to release some of the stress you are carrying.  Cheryl just smiled and said, “How can I help you sir?”  She knew why I was there.  She is the first person I see every time I walk into that office.  We often have a friendly banter.  Seeing her is part of what makes trips to that office enjoyable.  She runs the office in an extremely efficient manner.  Cheryl knows her job, enjoys her job and does it very well.  Lest you think everything is “fun and games” I sat in the waiting room today and watched as she “schooled” one of the visiting drug reps on what was the appropriate way to enter her office so as not to waste her time.  It was classic.  Done firmly, yet kindly all the while dressed as a frog!  I hope you never have to visit her office.  If you do you will notice that her desk is covered with all kinds of frogs.  Everyone has their thing, for Cheryl it is frogs and she covers her work station with them.  Walking in and seeing a giant frog in her chair was just too much.  It was exactly what I needed on this Monday.  On my way out of the office I asked Cheryl if I could take her picture.  She was all too excited to show off her costume.

[Read more…]

Friday

One of the blessings of our new home is my study.  The house still feels new even though we have been living here for just about a year now.  Mom and Dad just moved to PA after living in the same place for 48 years.  I laugh when I think about the difference between their 48 years in New Baltimore and the nomadic lifestyle Nancy and I have lived.  Spending time in my study was good.  I caught up on some reading.  I organized some projects for the future.  My afternoon nap was very good.  I awoke with renewed energy.  After spending some time reviewing my blog I thought it might be time for some updates…

Driveway

Rayann left before I could get a picture of the full lot

Back in early September I included a few words about our driveway in my Where’s Waldo post.  I had been feeling more like myself and had taken time to paint lines on the driveway to make it easier to know where to park.  When mom and dad first moved to PA they lived with us for three or four weeks.  There were four vehicles in our driveway on a regular basis.  My brother, Kevin, stopped in for a visit and then all the parking spots were gone!  The lines may seem a little OCD to some but they sure came in handy when the house was full. [Read more…]

Monday was round 12!

This marks the end of the aggressive treatment section of chemotherapy.  Over the next few days I will have the distinct pleasure of drinking a few more bottles of barium and then going in for another scan.  My numbers are still looking very good.  My oncologist is anticipating the scan results will continue to show improvement.  Once we have the scan results I will meet with Dr. Saroha to come up with an extended “maintenance” chemotherapy plan.

This week has been odd.  I am not sure why.  My energy level has been lower.  Nancy will tell you I am doing too much.  She may be right.  I am in that odd place where you feel good enough to do somethings but once you do it drains you to the point of not functioning well.

My neuropathy is not getting better.  I can feel the numbness spreading up my legs.  It is now past my knees and it feels like my entire lower legs are asleep all the time.  My feet hurt most of the time and I find it hard to stay stable while I walk.  My fingertips are numb.  I cannot feel much of anything.  Typing is difficult.  I used to be able to type with decent speed and fairly good accuracy.  Now I can’t feel the keys.  It is hard to know exactly what is going on when I am banging on the keys.  I was helping my Dad put together a cart for his lawn tractor and I could barely thread a nut onto a bolt.  I did it, but it was painful.  That project took twice as long as it would have back in April.  I am still learning to adjust to my new pace in life.  Each time I meet with Dr. Saroha he asks how my neuropathy is doing.  When I tell him he smiles a gentle smile and says it will get better over time.

2nd Opinions

Over the course of the past six months I have received two informal confirmations that the treatments I am undergoing are the correct mode of attacking what is going on in my body.  When I was first in the hospital a good friend gathered all my relevant information, including diagnosis and proposed method of treatment.  He then went ahead and started calling a few other hospitals asking what they thought.  The word came back that I   would be receiving the exact same treatment if I was under their care.  A few weeks ago we sent of reports, scans, diagnosis and multiple other reports to another cancer treatment center.  Nancy and I were hoping for some “magic bullet” or some special treatment that would cure what is going on.  Instead we were told my doctor was doing exactly what they would be doing for me.  In some ways that was disappointing…in others encouraging.  It would have been nice to hear, “We can cure you.”  It is reassuring to know that my oncologist is doing what these others would be doing.  I have always had the utmost respect and trust in Dr. Saroha.  This just seems to be one of those times in life when multiple opinions would be a good thing.

On My Own

For the past six months I have had a visiting nurse come to the house and “take me down” when it was time to detach me from my chemo pump.  They were wonderful people.  I watched the process and it seemed like something I could do myself.  If I am going to be doing this maintenance chemo for the rest of my life I would rather be a little self-sufficient if at all possible.  Dr. Saroha gave me the green light to be trained on how to remove the needle from my port.  This round was the first time I “took myself down” without supervision.  I had completed everything and was heading upstairs when there was a knock at the door.  My nurse was there ready to help get me detached from the pump.  I opened the door and laughed, “Sorry, you are a little late…I just took care of that myself.”  He looked confused for a moment and then said, “I wish more of my patients were like you.”  That felt good.  I need help these days…lots of help.  If there are things I can do on my own I want to step forward and take care of it myself.

God is Good All the Time…All the Time God is Good!