Home sweet home.

We got back yesterday from the visit with our daughter and her family.  It was a very enjoyable visit and gave us lots of things to occupy our minds.  Four days in the western Carolina mountains were a welcome respite from the grueling heat wave that has gripped most of the rest of the southeast lately.  But as we arrived back home we thought of the young girl from Kansas saying "There's no place like home".  I have another chemo treatment tomorrow and then, in the middle of next week, we are heading to the beach at Charleston SC, where our son and his family have rented a beach house.  Don't know that I will be spending much time on the beach itself, but having more time with family and eating lots of fresh seafood will no doubt provide plenty of fun and memories.  Not a bad schedule for someone in their 2nd month of chemotherapy treatments.  I am still feeling just fine, although I must admit to feeling a bit more fatigued lately and I do have a few sores in my mouth from the new Pralatrexate drug treatment, although nothing bad.  Things could certainly be far far worst and I praise the Lord for allowing me to stay as healthy and active as I am.

As I mentioned I have another treatment tomorrow and that will complete all of the treatments (6 in total) for the 1st cycle.  I will have a 2 week break and then I start a 2nd cycle during the first week in August.  After completing the 2nd cycle in mid September, I will have a series of tests to assess my progress, and then most likely begin the 3rd cycle of treatments.  That assessment will be key in telling us how well the treatments are impacting the Lymphoma.  At the present time only God himself knows how we are doing.  But since I put my trust in Him, I feel that my progress is in good hands.  In the meantime we are taking it one day at a time and today is going quite well thus far.

Change of scenery.

Yesterday was another trip back to Duke, hopeful that my white blood cell count was back close to normal so I could get another treatment.  The blood test results indicated that the Neupogen shot I got last week to help boost my count was very succesful and my count was well into the normal range.  That was good news so the next chemo treament could proceed as scheduled (obviously I have a very distorted view of what constitutes "good news").  This is my first time for this new drug called Pralatrexate, which is  fairly new, and targeted primarliy at T-Cell Lymphoma.  My normal treatment with this drug is once per week for 3 weeks, although I missed last week because of my low white cell count.  As I have mentioned before, the primary side effect is mouth sores, which normally appear in about 7 to 10 days after treatment, so good oral care and lots of prayers between now and then are definitely in order.  Everything went smoothly with the treatement except that they "lost" my drugs for about an hour, but the search party finally arrived with IV bag in hand.

After leaving Duke we headed 4 hours west to visit our daughter and her family for a few days.  As I have said in an earlier post, my cancer will not be allowed to rule my life.  So even though yeterday was my first time for that drug, and I am not totally sure that I won't have a bad reaction, we are planning 3 or 4 days with family.  The safe bet would have been to return home, but then we would miss the excitement and wonder seen in the eyes of a 5 year old and 2 year old, and the joy of holding a 3 month old.  Now that is what life is all about.  And we will grab every opportunity to take advantage of the beauty and joy the Lord has given us.  Besides that, our son-in-law has promised to slow cook several racks of ribs on the grill, and the boy knows how to cook ribs.

Bye bye beard.

12 years ago, when I was getting chemo for my Hodgkins Lymphoma, I had almost no side effects from the treatments.  In addition to looking and feeling pretty normal, I never lost any of my hair.  My hair style has never been something I spent much time thinking about.  It was there, it grew, you washed it at shower time and got it cut periodically.  Several years ago I added a beard, which I keep trimmed short.  Today I was wearing a black shirt and noticed several short grey hairs clinging randomly across my chest.  Not thinking anything about it I just brushed them off and went on my way.  But a short time later I noticed that they were back.  And sure enough, if I rub my hand back and forth across my face, the collection grows in number.  So it appears that I am destined to appear clean shaven and bald for the forseeable future.  Given all the other possible side effects that I could develop, I'll take this one hands down.  And just think how much money I will save on razor blades :-)

My morning walk.

Something I have been told, and have seen in various articles, is that exercise is a very good thing that I can do for myself (of course that applied even before my diagnosis).  Since I still feel very good, I don't have any excuse for not getting some form of physical activity everyday.  So I have been walking for about 30 minutes every morning and, since we live on a lake, we have been taking a swim each afternoon.  Both are enjoyable and will hopefully assist in keeping my body strong and more resilient.

This morning, as I walked around our neighborhood, the 23rd Psalm started runnung through my mind.  And the 4th verse just kept repeating over and over.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

The Lord is so special in the many ways that He lets us know He hears our prayers and knows the desires of our hearts.  He is with us all the time and pours out His comfort upon us.  And He speaks to us if we will just take the time to listen.

Something new to consider.

Yesterday included another trip to Duke (the car just knows where to go by now).  This time we went to the Adult Bone Marrow Transplant Clinic.  My oncologist referred me there to have an initial evaluation and assessment, concerning the future possibility of a bone marrow transplant.  Since my particular type of cancer is difficult to get into remission, and often difficult to keep from recurring, a BMT is a method utilized to assist in preventing recurrance.  Our daughter worked as an RN in the Pediatric Bone Marrow Transplant unit at Duke several years ago and has been a great source of information and understanding.  To say that it is complex and amazing is an understatement.  We asked a lot of questions and struggled to absorb the answers.  I am definitely a candidate for an autologous  transplant, which is a procedure using my own stem cells (versus donor cells), and is much easier on my body since the cells will not be considered "foreign".  My oncologist will talk with the doctor from BMT and then with us about whether this approach will be right for me and if it is something we should pursue.  It could happen as soon as October, or it could be sometime early next year.

It seems that just as I start coming to grips with my life as a cancer patient, something new pops up and rattles things back up a bit.  In this instance we might wind up living in Durham for a couple of months, close to the BMT Clinic, while I recover.  Never a dull moment.  But that is where it helps to know that God is in charge, and He will provide for all of our needs.  We may not be able to clearly see our way through the maze of details and arrangements, but then we don't really have to.  If that is the path that the Lord has for me, He will open all the necessary doors, calm the raging seas and provide a way for us to follow.  Our objective must be to stay focused on Him, and not on our circumstances.

Appearances can be deceiving.

As I have said here previously, even before starting my chemo treatments I have felt just great.  And after the treatments started I have not had any of the side effects that everyone hears so much about.  I have felt so good that I wondered if the drugs were actually having any effect.  Part of that is just my proactive personality - let's just get on with it is the way I approach most things.  So I had three day of chemo, followed by 10 days without treatments, and then yesterday I was scheduled for another treatment.  Since I had been feeling so great, by the time I arrived at Duke I was actually excited to be able to get another treatment started, and hit that cancer with another salvo of artillery.  So you can imagine how shocked I was when they told me that I would not be able to have the treatment because my white blood cell count was so awfully low (.7 for those who understand such things).  My immune system is practically non existent.  I had thought that the chemo had run it's course and not a lot was going on, but in truth the battle inside was ragging on in high gear.  I was given a shot to help rebuild my white cell count and now I just need to wait while my bone marrow reestablishes my white blood cells.  Hopefully by next Wednesday, which is my next appointment, my white count will be suficiently high that they can resume treatments.

I have now decided that I will be more patient in the future.  Some very smart people have invested a lot of time and effort in developing those treatment protocols and those periods of days, in between treatments, are there for good reason.  And the frequent blood tests are designed to pick up situations like mine where an even longer break is required.  The doctor indicated that my low count is not alarming or cause for undue concern, although I do need to be careful about exposure to germs or bacteria.  So for the next week I think I am going to act like a hermit and stay out of sight.

Outlook is key.

Since being diagnosed I have done lots and lots of reading.  I have learned a great deal about Non Hodgkins T-Cell Lymphoma and just wonder how we ever got along without the internet.  In today's local paper there was an article about a man that lives nearby who was recently diagnosed with pancreatic cancer.  A different form of the disease but equally devastating.  A few of the things he said sounded very silimar to my own feelings and were encouragements to my spirit.  "I want you to understand that I sincerely understand the severity of my diagnosis.  But... I want to tell you I feel healed.  I don't feel any pain.  I don't feel anything that would make you characterize me as being sick."  And the article goes on to say "He told his doctor he didn't want to hear his prognosis.  And he doesn't read websites that could have negative statistics.  "That's irrelevant to me because there's only one statistic that matters to me and that's mine.""  Substitute my name and my form of cancer and that article could have been about me.

I have read many many blogs/journals/articles written by people just like me, who are in the midst of their own personal battle, or who have survived their ordeal and are now cancer free.  Unfortunately there are some stories that had to be finished by a family member or are no longer being updated.  But they all help me understand that by no means am I alone with my thoughts and fears and doubts and apprehensions.  Like many other things in life, it is difficult to totally comprehend the true depths of the struggles of other people if you have not been through it yourself.  That does not imply that your compassion, your support and your concern is any less important or any less appreciated.  But there is some sort of common bond that exists in the writings of other cancer patients.

The article mentioned above also includes a quote from the man's wife.  "The family has a "we're going to beat this" attitude.  It has become our family motto.  We are going to live, laugh and love.  That's what we are going to do now, and in the future."  Who could possibly argue with that kind of mindset.