Only two months OOPS A YEAR AND THREE MONTHS this time: CLL and Lung Cancer Update

[NOTE: I wrote this in November 2020, but only saved it as a draft and forgot to come back and finish.]

 I left off with the possibility of the lung cancer returning, but perhaps I was in denial because I didn't think it had come back. Probably more truthfully, I didn't want it to be true that it came back. We planned like normal and our plan included leaving for our Drive to Texas to our winter home on the 28th of October and I also made our hotel reservations along the route.  As I said on Facebook, "Man plans and God laughs."

I had the CT scan on October 12th, I had two appointments scheduled on the 13th, one with my Oncologist to get the results of the scan and a later that day routine appointment with my pulmonologist.  Unfortunately, my oncologist had a tragedy in his family and the appointment was canceled. However, my afternoon appointment with the pulmonologist was fortunate because she is just as knowledgeable in lung cancer and in reading CT scans.  She pulled up the scan and immediately found the area. She pulled up two previous scans and the PET Scan from the summer and kept switching back and forth comparing. She then showed me how it was growing, which I could already see as I could see the screen and she said it was getting closer to the wall of the which would not be a good thing.  She also said that a biopsy would not work as she could tell there is a clip from the last surgery. While I was still in her office, she told her staff to call over and get an appointment with the surgeon. When she had asked who my surgeon was last time and I told her, she said, "Oh, he is excellent and an expert with the robotic procedures."  She thought it was ironic that the robot broke during my last procedure where he did a wedge resection. 

She then pulled up my blood work my oncologist ordered. my white count went DOWN below normal (didn't made sense) at 3.0, lowest in two years; absolute neutrophils 1.7 and they were first time low in two years; my RBC slightly low at 4.3, but always is; platelets had been in normal range for two years, which I was very proud of but this time dropped from 175 to 111 (normal 130 to 140) not dangerously low and not anywhere close to my lowest low over the years; Hemoglobin was low at 13.5, but not bad and had actually come up to highest in two years; Hematocrit low at 38.8; other stuff either not reported or in normal range.  She could see it was wonkey and tracking wrong but deferred to my oncologist for an explanation. My appointment had been changed to the next week.

The nurse came in and said my appointment with the surgeon was for next Monday, October 19th. The previous Friday I had two bridges permanently put in that we had been working on for two months and I could finally chew real food (on Saturday). Because I had six temporary caps in on both sides, I had been eating mushy foods and lots of soup. 

I saw the surgeon, he looked at the scans I brought with me and said, OK, this time we take the entire lower lobe.  This one is going to hurt more and take longer to recover (oh goodie). He left the office and came back in and said his earliest opening was next week Thursday, the 29th of October. He asked when my next IVIG infusion was due that boosts my immune system. I told him I was going to be getting it a couple of weeks after we got to Texas. He wanted to know if my oncologist would be able to schedule it before the surgery. I told him my oncologist was such a great guy, I'm sure he could.  We had more discussion and then left with our minds spinning a wee bit because it seemed things were moving so very fast.

I called my oncologist's nurse from the car on the way home.  I said I had a rescheduled appointment to Wednesday afternoon (two days later) and told her what the surgeon wanted with my infusion and told her I didn't want to wait and ask the doc then because I knew that sometimes the medication had to be ordered.  She put me on and came back and said, "good news, we have it in stock," Hooray!  They were out of it last year and could not get it for months.  She called back again in a few minutes and asked if I could come in earlier Wednesday and stay for the infusion (it takes about six hours with premeds, and I have to do it slow because of reactions if I don't.).  I said, "absolutely for sure."  

[NOTE:  This is where I stopped over a year ago and saved it as a draft.]

Well, I must have gotten the infusion, but I don't remember. I do absolutely remember having the lower lobe of my right lung removed and the doc was absolutely correct. Recovery was MUCH longer. The pain was not necessarily worse, and I now remember it as not being as severe as the first time. The surgeon said all testing showed the margins were clean, all the lymph nodes he removed tested negative for lung cancer cells and the decision between my oncologist, surgeon, and pulminologist was that no chemo or radiation follow up was needed. Such a blessing.

However, about two weeks after surgery I started to cough a lot.  It was even hard to talk because of the coughing.  My oncologist, pulmonologist and surgeon could not figure out why, but all said they doubted it was connected to the surgery.  We then began a quest of inhalers and nebulizer treatments to control it.  The severe coughing lasted a few months and regular coughing lasted up until a couple of months ago.  I am down to using an inhaler once a day.  However, after the surgery things really went downhill for a long time.  I will update that in a few days.  

Now I have to figure out again how to eliminate spam comments on one of my older posts I was notified about.  Trying to remember how to do that led me to finding this "draft" post.

Only Four Years Since Last Update. Time for Another Post and Another Disease

 I was notified a Spammer had posted on one of my old posts and I came to remove it just in case anyone still reads this.  It was a doozy. He or she claimed they had a cure for CLL, HIV, and a host of others. Just go to the link he left and buy Dr. Bozo's miracle snake oil cure in capsule form.  Of course I placed my order before deleting his comment on my Blog.  Sigh.

I figured I might as well leave another update since last time.

Non medical stuff:

• Besides my five grandchildren, we now have five great-grandchildren. Four boys and a girl.
• We sold our cabin. Boo Hoo. We were only going down to mow the lawn and my wife had no desire to spend the night.  She kept telling me to go down and stay for a couple of days by myself, but that didn't seem right.
• By selling the cabin, we paid off the mortgage on the house.
• We celebrated our 50th Wedding Anniversary December 23, 2017. Our girls came up from Texas and put on a great celebration for us. Of course the color theme was gold...and red.
• Our last time to go to Myrtle Beach was February and March 2019.
• We bought a double wide mobile home in April of 2019 to be placed on our daughter and son-in-law's property in Midland, Texas.
• The home was delivered and placed behind and a little to the side of their home in June 2019.
• We spent the winter there, November to mid June. Yea, longer than we expected thanks to the pandemic. We planned to spend six months, but for a long time it was much worse in NY than Texas. Until, NY was getting better and Texas was getting much worse. We felt it was now safter to go home. We hope to get back in November.

Medical stuff:

• Yea, I did chemo once again, perhaps for the last time. We had to stop after four rounds because it was killing me.  I was sleeping 20 hours a day sometimes and barely eating.  I did lose almost 30 pounds which was a benefit of the suffering.  Doc said no more chemo for me. Several new treatments have now been approved.
• As horrible as it was, once my white count finally came back into normal range, It has stayed there. In fact, everything is staying in normal except Red Cells and Hemoglobulin!  My white count and platelets have not been this long in normal range since diagnosis 15 years ago. 
• I am still getting IVIG infusions every two months to keep up my immune system.
• I am currently in the process of getting over an abscessed molar I have been fighting for weeks. A root canal was tried last week and continued this week until the tooth split at the roots. Then it had to be pulled out in pieces and it was horribly painful. Today I didn't take the pain meds. It still hurts, but not throbbing.
• The details of my latest disease is below.

NEW DISEASE

In December 2018, we drove to Texas to spend Christmas with the family as usual. We had barely gotten to Buffalo when I started feeling sick and coughing. That night, at my brother's in Ohio, the cough was worse. The next morning Cheryl thought we better turn around and head back home. With CLL I get pneumonia very easy.  I wanted to continue on because celebrating Christmas needs to be with family.  After we go past Cincinnati, Cheryl drove the majority of the rest of the way.  We stopped in Round Rock so we could go to our former church and visit the class I used to teach. I still had the bad cough and sat in the back of the class, far removed from everyone. Since most are elderly, Cheryl asked everyone to stay away. We then went on to San Angelo to our oldest daughter's and spent one night with plans to come back in a few days and spend the second half of Christmas with her.  Then we got to Midland and I basically went to bed. The next morning my daughter came in, took my temperature and announced she was taking me to the ER. I had a 103 temperature. She said we were not going to the major ER in Midland as she did not want me sitting around for hours, but a little country hospital in the next town over.

I was seen immediately by a young doctor who was also in the Army Reserves.  He did a flu test and one for strep throat. They were both normal. Instead of sending me home which probably would have happened at a large, busy ER, he did a chest X-ray.  He came back in and asked if my x-rays ever showed something out of the ordinary. I told him they often reported "ground glass opacities" which seemed to shift around to different areas and different lungs. I also said sometimes when the lymph nodes got quite large they showed up. He said he thought this was different and would I mind doing a CT Scan. Of course we said yes.  After that, he came back in and asked when my last scan had been. I told him about two years done by my oncologist. He asked if he could call him and see if they could compare the scans. After talking to my NY oncologist, he came back and said we think there is a good chance you have lung cancer. OK, that was the day of our 51st anniversary and not the present we were expecting, but OK.  He remarked that we both seemed so calm. I said, we both have a strong faith and after all these years of dealing with cancer, we know there is no reason to panic as it does no good.  I asked him what we should do now and he said that both he and my NY doc thought we just deal with it when I get back to NY.

Cheryl and I talked and we both thought it was best to get back fairly quickly and start dealing with it. I agreed and reminded her we had a paid for reservation in Myrtle Beach for February 1st and I wanted this taken care of by then! I called home to see when I could get in to see my doc after driving back to NY and they gave me an appointment for December 30th.  We had not planned to leave until the second week in January, but we had a battle to fight.  The next morning my fever was gone and the prescription for my cough was calming it. We had a very nice Christmas with both daughters and grandchildren and headed home.

When I had my appointment, I wore my Myrtle Beach sweatshirt, told him I wanted surgery or treatment started before February and if needed, I could do chemo at the beach with my established oncologist there who he personally knew. He said OK, but there was a lot to do first and he would push everything as fast as he could.  Next I had a scheduled PET Scan that took a while to get in, but the results were glowing in a big bright area of my right lung.  Larger than stage one. My onc said, well that pretty much confirms it but now we need a needle biopsy to see what type and how aggressive it might be. Of course that had to be scheduled. I could hear the clock ticking down.

The day of the needle biopsy was, umm, interesting.  I can't remember all the prep because my memory is seared with the actual testing. I remember it wasn't horribly painful, but quite uncomfortable and I wanted it over. It was a CT scan guided biopsy and I went in and out of the machine with the needle in me. The doc said he was having trouble getting to it as it was hiding behind my ribs.  He actually went in and out of the machine a few times with him lying partially on top of me as he tried to guide the needle to the spot. He was looking back at the screen that showed where the needle was. Suddenly I started spewing lots of blood. Very much like vomiting but with the blood forced out of my lungs. I was aware one or two more folks came into the room as I filled up three or four of those kidney shaped hospital vomit pans. A female voice kept saying I know your scared, but you will be OK.  I kept shaking my head no, trying to convey I wasn't scared but she apparently interpreted it that I was saying I would not be OK. Truthfully I was thinking, "too bad they aren't filming this for an episode of my favorite hospital ER show, Chicago Med. I thought, I hope nobody shouts get him to Baghdad, the shows indication the patient is critical. Finally the spewing stopped. Not sure how because I don't remember anybody doing anything. The doc explained that it happens sometimes, not often but sometimes.  He said he got a few samples and hopefully it would be enough. I thought, "It better be, because I quit."

Well, when I went to see my oncologist and the results were in, he hadn't gotten anything that showed the tumor.  Doc said he wasn't going to try and repeat it (ya think?) and he was going to get me an appointment with a surgeon. He didn't want any of the local surgeons doing it and he said he knew two great ones, one in Rochester and one in Albany.  Since Albany was closer and research showed both were highly rated, I chose Albany. By now we were past the halfway mark in January.  

I got in quickly to see the surgeon, wearing my Myrtle Beach sweatshirt. I almost think he saw me after hours because other staff were leaving.  We liked him immediately and he explained in great detail what he planned to do, what he might have to do and the possible dangers.  We listened and asked questions.  I also told him of my goal to get to Myrtle Beach by February 1st. He smiled and said he would see what we could do. He also remarked that we seemed too calm. To him that usually indicated denial or not really understanding what was going on but he said he could tell that was not the case with us. I told him it was our faith and Cheryl explained we had been expecting another cancer for many years and were emotionally prepared for it.  My Dad, who had this CLL also had multiple other cancers develop, including, thyroid, throat, prostate, and several others.  He said he would get surgery scheduled as soon as possible but in the meantime I needed to get a current blood test and clearance from my cardiologist.  He called the next day and said we were scheduled for Friday, January 25th. Hmm, I could see we would be a little late checking into Myrtle Beach.  I also got a fast appointment with my cardiologist and after a current EKG, he cleared me. The hospital called and said I needed to be there by 6 a.m. for 8 a.m. surgery.  Both our girls said they were flying up. Cheri said she would fly into Albany the day before and Cindy was coming up a couple of days before.  Because we had to be to the hospital so early, I made hotel reservations for all of us.  Cheri only had a week off work but Cindy was open to stay for a bit as her mother in law was going to help her husband watch our two youngest grandsons.

I wore my Myrtle Beach sweatshirt to the hospital. We all showed up at 6 a.m. I did the check in stuff and we were directed to a large waiting room where they would call me back when ready. By 10 am, nothing. We were told there had been an emergency and they had to wait for an operating room to free up.  About noon the doctor saw us and said it was not because of him and he was waiting just like we were.  Finally about 3 I was called back to the prep area and Cheryl and the girls could come.  At 4, very hungry me was taken out for surgery. The goodbyes got a little teary. They started it!!!  The doc said it could take up to two and a half hours.

In the OR, as they were ready to put me under, I remember thinking when I opened up my eyes, I would either see Jesus or see my family. I was hoping for family. Finally I started becoming aware again and I was in a room. I was disappointed that I only saw a nurse. I had planned to see Cheryl and the girls because I had already planned  to say, "I must be in Heaven because I see three angels."  Well that got messed up.  I was shocked to see it was close to 11 p.m. Pretty quickly Cheryl came in followed by the surgeon.  He explained that he started the surgery and when he was inside, the robot broke down, He had to get it out, regroup and do the surgery a different way.  He said he did a wedge resection taking parts of two lobes in my right lung. He said it wasn't as large as they thought because it was surrounded by mucous and was called mucosal adenocarcinoma, a subtype of non small cell lung cancer. He was pretty sure they got it all. He was scheduled to go away for the weekend but said he would see me on Monday and I might go home then or Tuesday. He said I was to return and see him in two weeks at his office. He said a great team of doctors would monitor me over the weekend. I reminded him we were going to Myrtle Beach the next week.  I told him my one daughter was staying to drive us, I already and an oncologist in place there for follow up, and I had the world's best caretaker.  I also told him we happened to rent a home on stilts at the beach that had an elevator from the ground right up into the kitchen.  He said OK as long as I got  in-person clearance from my regular oncologist that next Friday.

I wasn't in a lot of pain but some.  I also had a chest drainage tube coming out my side. The nurses were great but the doctors that weekend seemed pretty useless. No personality, no bedside manner and no interest. On Sunday one of them came in and said they were removing the chest tube and I could go home around noon if that went well. I said, but the surgeon said he would see me on Monday.  "I'm in charge." Okaaay. So in less than 48 hours after major surgery, I went home.

I went home, the hospital type pain killers wore off and the real pain began. Yikes, I had been deceived. Oxycodone barely touched it.  Cheryl and the girls monitored me closely and gave me the pain meds exactly when the time was up. Cheri flew home on Thursday and I saw my oncologist Friday.  I wore my Myrtle Beach sweatshirt.  He cleared me.  He did say after discussing me with the surgeon and pathologist they did not think chemotherapy follow up was needed at this time. We would follow up with quarterly CT Scans and then go to every six months and eventually to annual. I think he might have thought he didn't have a choice but to clear me.  I told him watching ocean waves was way more healing than watching snow fall. We went home and Cheryl and Cindy packed the car and I went back to bed.  By this time I was weaning myself of the oxy except for at night to sleep.

Saturday morning we left on the two day drive and I took oxy for the trip along with a blood thinner to prevent clots.  I slept a lot of the way.  We got into our home at Ocean Lakes Family Campground on Sunday afternoon, three days later than we wanted, but it was still great.  Cheryl bought me a walker with a seat so I could walk and rest. By the end of the first week there, I was only taking Tylenol for pain. I tried to go further every day walking. Eventually I walked the beach during lower tide where the sand was smooth and harder. When I tired I sat and watched the waves. I spent hours doing it as the pain faded more and more. By mid March, all the pain was gone, including where the incisions were on my side and back and I could roll to my right side while sleeping without waking up.

It was after Myrtle Beach we drove straight to Texas to decide where we wanted a Winter home, that is which of the two cities where our daughters lived. We had decided it was time to spend more time with the girls and grands and great grands. We did some house hunting in San Angelo and then looked at new double wide mobile homes in Midland. We eventually decided it would be way cheaper to do that in Midland, even though we like the city of San Angelo much better.  Our daughter in San Angelo is a CPA and she had just quitting her job after tax season and was just starting her own, new firm and we knew we would be there mostly during her super busy time and we wouldn't see her much and Midland is where our two youngest grandchildren live. As it turned out, that really was the best as grandma held Nanny School for our 4th and 6th grander when it all shut down this past March. Their mom is a 5th grade math teacher and she was very busy teaching her 180 students virtually.  We had originally planned to only stay six months, but NY was not as safe as TX...until June when NY was safer and we came back. They are all back in school now in Texas, in person. Sigh.

Well, I'm going to leave you hanging because the scan I had in August followed by a PET Scan, indicated the lung cancer MIGHT have returned but both scans were indeterminate. It didn't glow too brightly and might even be just irritated scar tissue because it is right along the incision line. Doc said if it was closer to the outside he would order a needle biopsy but since it is still in a bad position we are just going to watch and wait and repeat the CT Scan at the end of October and I agreed.  How do I feel?  I don't want it to interfere with us going back to Texas for the winter.  I guess I should have bought a Texas sweatshirt.

YES, I'M STILL HERE AND ALIVE

Wow, no post since October 2009?  Six years and four months???  Where has the time gone?  I guess I was having so much fun I didn't notice.

I have thought many times I needed to put up a post and then didn't.  Not that I'm a procrastinator or anything, but that is ridiculous.  Tonight I got an email from a person that might be newly diagnosed with CLL.  He will find out later this week.  The email was rather tentative but basically wanting to know if I was still alive.  When I mentioned it to Cheryl, she said she has felt for a long time I really need to start writing on here again.  I guess I can spend a little less time on Facebook and playing games and devote a little bit to posting here sometimes.  By the way, the fellow that contacted me with the email connected with me on Facebook and we spent a long time chatting back and forth in private message.  I hope I helped him some.

There is no way I can cover all that happened in the last six years so here is a wrap up:

PERSONAL LIFE STUFF:

1. My mom passed away four years ago at the age of 96.
2. We welcomed grandchild number five, a sweet boy named Jack who just turned six two weeks ago.
3.  The three oldest grandkids, Jonathan, James, and Holly, all graduated from high school.
4. We welcomed a great grandson named River.  Jonathan's little boy.  A cutie not yet a year old.
5. We moved to upstate NY three and a half years ago.  I know, crazy, right?  I have a brother in Manhattan, and one in Endicott.  Cheryl has seven brothers and sisters in the area where we moved.  Some of them not doing so well health wise and it was time to reconnect and help out where we can.  They help us, too.  We moved to Clinton, just outside Utica.
6. We travel to Texas a couple of times a year and also spend time each year in Myrtle Beach in February and March.  (we are in Myrtle Beach now)
7. Cheryl and I celebrated 48 years of marriage this past December.
8. We still have our cabin on the small lake.  But it is for sale...sort of.  We just don't push it too hard.
9. I rediscovered that I hate snow as much as I did when we moved out of NY in the 1960's.

HEALTH STUFF:

1.  I had three stents put in my heart two years ago.  One blockage was 100% and 90% for the other.  Still watching a couple around 60%.  No heart attack, thankfully, just angina. I was awake through the whole procedure and found it interesting, even when they were having trouble.  Didn't even feel nervous. My heart was acting up after and they wouldn't let me go home until I had "P" waves.  Still didn't let me go when I waved my urine bottle at them.
2.  Also two years ago, I had surgery on my right leg twice to get rid of squamous cell skin cancer.  Didn't get it all the first time and had to go back in "deeper and wider."
3.  Again two years ago I had my chest port removed because it stopped functioning after nine years.  They were supposed to put a new one in at the same time but it took over an hour to get it out and they said my body was showing signs of a lot of stress, so they didn't put the new one in until a month later.  That went fine. (Five surgeries that year)
4.  Had cataract surgery on both eyes last year - and I still wear trifocals! But I do see better at night.
5.  I continue with my IVIg infusions, but now it is only every two months as the IgG levels are holding longer.
6.  Arthritis continues to get worse where I have to use a cane sometimes.
7.  I had four rounds of chemo in 2014.  This time I had Rituxan and Bendamustine (Treanda) that was approved for CLL in 2008. I was on blood thinners at the time and my platelets were low, so we didn't do one of the newer treatments because of possible internal bleeding.   That chemo regime knocked me on my butt more than the Cytoxan, Rituxan, and Prednisone I did the first time.  We did it because my lymph nodes exploded.  My neck got so big it was difficult to turn my head.  Many internal ones were 7, 8, and 9 centimeters in size. I only did four rounds for several reasons:
    a.  The nodes went down quickly.
    b.  As I said, it was kicking my butt
    c.  It was knocking my blood counts down too low.
    d.  I told the doc I was too busy to do more.  Really. He said, "OK, we aren't trying to cure it, just knock it back and we have.
    c.  I continue to get fatter.  I have gained 112 pounds since diagnosis in 2005.  I try to blame it al on steroids, but eating with little physical activity has a lot to do with it too.

So how am I doing now?  My blood work last month looked the best it has since diagnosis.  My red count had been quite low since treatment and that reached normal.  White count and platelets also came into normal range.  So the leukemia is behaving.  Not so much the lymphoma part.  My neck nodes are starting to get quite bulky again. In mid October last year they came up quickly and my local onc suggested chemo again.  I said not yet and he said OK he would follow my lead.  The nodes continue to grow some but much slower now.  Also, I will check with my expert specialist at MD Anderson, Dr. Wierda, before doing anything.  We had been planning to do Ibrutinib (Imbruvica) this next time, but now I am not so sure.  It may not be the miracle drug it seemed to be at first.  Although many people have had great results, more are beginning to have complications.  In fact, an oncologist I saw today in Myrtle Beach (for port flush) said she has stopped using it for now.  She had two patients with very severe complications. And two more with serious bleeding issues.  One was in ICU for three months, finally got out a few weeks ago and just went back in this morning.

By the way, that oncologist I saw today said I don't look 70.  If we lived here in Myrtle Beach permanently she would be my doctor.

Well, that is enough for now.  You are sort of caught up on what has been happening with me and you know I am still alive.  See you in six years.... No, I will try to post more if anyone still reads this.

Light The Night Walk - Austin - October 24, 2009

I am such a procrastinator!  For years I was going to join Procrastinators Anonymous, but I kept putting it off.  Finally got around to finding out where the meetings are but I haven't been because they keep postponing them.  I think the last meeting was about ten years ago.

It is almost time for the annual Leukemia and Lymphoma Society's Light the Night fundraiser.  This will be my fifth year to raise funds and participate.  But, it is less than three weeks away and I haven't raised a penny yet.  It is not like I didn't know about it because I am on one of the committees.  How sad is that?  I even participated in the kickoff in July and was on a discussion group to give tips on fundraising.  Even sadder, huh?  I think I might have told them to start early...sigh.

So how do I try to redeem myself?  Well, tomorrow I am sending out emails to all my family and friends begging, er, asking for support.  I am also posting here and asking anyone who isn't already supporting someone in their effort to support me.  It is really easy to do online using a credit card and you will get an instant receipt for tax purposes.  Just go to my page: http://pages.lightthenight.org/ctx/AustinL09/jtw890 then look over to the right where it says "Make a Donation" and follow the directions after selecting an amount and pushing the red "Donate Now" button.  If you will be seeing me in person, I can take a check made out to the Leukemia and Lymphoma Society, or you can mail it to my home address.  I know these are horrible financial times and there are all kinds of worthy efforts, but if you could possibly support me with even a small donation I would be grateful.  The five, ten, and twenty dollar donations do add up.  If you can't afford that, I do understand and would appreciate your prayer support if you are so inclined.

So why do I do this?  This will be my fifth year doing the walk because I believe the LLS does some good work.  They give lots of money to research and were a huge contributor to the research that led to the new Gleevec drug which has been a life saver for people with CML (another type of leukemia).  They also do a lot for patient education and give some financial assistance to patients also.  I have benefitted in several ways from the work they do.  Too many children and adults die every year from blood cancers and I want to have a small part in trying to find a cure.

• A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
• A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
• A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
• A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team

The walk will be October 24 by the grounds of the Dell Children's Medical Center at the old Robert Mueller airport in Austin.  If anyone would like to join me on the walk, you are welcome to come, just let me know.

In the meantime, visit my fundraising page,
 http://pages.lightthenight.org/ctx/AustinL09/jtw890
and read a little bit more information about me and the walk, and if possible, make a donation.  Thanks! 

Last year on the walk.

 Red balloons are supporters, white balloons are for survivors and gold balloons are in memory of a loved one:

Team Wagner:

The starting line:

Strange Disease

It is the middle of the night, but yesterday was my IVIg day and the steroids never let me sleep.  I thought I better post to my blog before some folks get upset with me again.  It has been a difficult couple of weeks.  I last wrote about the stomach virus and it seemed like it was almost gone when I posted.  But it wasn't.  It kept making a comeback.  By Saturday I thought it was finally over and then Sunday morning about 1:30 a.m. it made a huge comeback.  During the night I felt worse and worse.  And I started running fever along with the stomach stuff.  I was scheduled to give the prayer before the morning sermon in church that morning and I also teach a class.  I knew I was in no shape to go but I was also upset because it was too late to get a substitute who would have time to study for the class.  I waited until a respectable hour to call the pastor to tell him I would not be praying in the worship service.  He said that was no problem and he would get someone else to fill in.  I knew that could be taken care of easily with just a little bit of notice. 
My class was also well taken care of.  Fortunately I do not teach my class by lecture.  We learn by discussing the lesson and the class is great with discussion.  The two books I use were already marked up with underlining and notes in the margin and questions to ask, so I gave Cheryl the books and asked her to get one of the capable members to lead the group.  Well, three people stepped up to the plate.  My daughter served as moderator to begin with for opening announcements and sharing time of blessings and prayer requests.  While that was going on, two of the guys, Joe and Cliff prepared by skimming the books.  Cheryl said it all went very well.

By afternoon my fever was about 102.  However, ever since the CLL/SLL diagnosis, my regular temp is in the low to mid 97 range, so it was really a higher fever equivalent to over 103.  I felt rotten and I was coughing too. 

That night the high fever broke and I decided I needed to keep the appointment the next morning with my oncologist and I knew I could wear a mask in to protect the other patients.  (They also have a sign posted asking for anyone with flu symptoms to wear a mask.)  The exam went well until he was listening to my chest and he didn't like what he heard.  Since I am so prone to pneumonia and have had it three or four times since the cancer diagnosis and twice when I had no symptoms including no coughing and it only showed up on "routine" CT Scans, he sent me right over for a chest x-ray and told me to bring the films back to him.  When I got back he and his PA assistant looked over the films and decided I had something cooking in my lungs.  He pointed out the light areas to me indicating fluid.  So he gave me a prescription for antibiotics.

It is a week later and I still have a slight cough, but it is much, much better.  With the excitement of the chest X-rays, I had forgotten to get my blood test results, so I got them today when I had my IVIg infusion.  I knew they had been good lately, but I was shocked when I looked across the columns and saw that there has basically been NO CHANGE, neither in my white count nor in the absolute lymphocyte count since last March!  After the rapid increases of late last year and early this year, the brakes were applied!  Thank you, Lord.  Even my platelets which had plummeted last month came back up to 120.  My IgG level had only dropped into the 600's also.  Still low enough for the infusion (under 700), but not real low.  The one thing I wish I had thought to ask and didn't was, "why wasn't the white count way up last Monday when I was in the middle of the lung infection?"  Normally when you have an infection your white count rises.  Is it because of the damaged immune system that I don't mount a normal defense?  I know some other CLL patients have had a jump in white count when they have been fighting infections, so I really don't know.  However, as Dr. Wierda at MD Anderson has remarked several times, "I don't follow the norm at all."   That could be a good thing to be abnormal, couldn't it?  Stupid cancer, stupid disease.

I told Cheryl tonight that I sure wish I felt as good as my blood counts looked, but that is probably from fighting the stomach virus and pneumonia.

Now I have to go write another entry (I have several I have written in my mind - wish you were all mind readers as it would save me a bunch of time!)

How to Lose Ten Pounds in Two Days

Step One - Come to my house
Step Two - Breathe deeply of the air
Step Three - Hug all occupants
Step Four - Go home and wait
Step Five - When you feel that little knot in your stomach, remain close to the bathroom
Step Six - After emptying all bodily fluids from every orifice, repeat and repeat and repeat again. When finished, repeat again.
Step Seven - Don't eat or drink for two days.  Don't worry about will power, you won't want to and you can't.
Step Eight - step on the scales and admire your success.

As you probably surmised, we have been victims of a particularly nasty stomach virus.  It started with our one-year-old grandson, Gavin.  He became ill on Saturday.  He got sick in his mom's car as they were coming over to drop Jonathan, Gavin's older brother, off at our house.  Jonathan spends every Saturday night with us when they are in town.  Cindy knew Gavin had not been feeling well for a couple of hours and she was not going to bring him in so I wouldn't get sick.  However, she felt she needed to bring him in and get him cleaned up.  I wore a face mask for a little bit, but that didn't last long - silly me.  Of course he wanted Papa to hold him and I wasn't strong enough to resist.  He got sick again, but fortunately he was with his mom at that point but they both needed a bath this time.  After getting him and herself cleaned up, they went home.  He was sick from both ends all night long and by morning she took him to the ER.  They put him on zofran and also prescribed popsicles for hydration therapy.

Here is a picture of him in the ER in the middle of his "therapy"

Makes you say, "aww," doesn't it?

By Sunday morning Cheryl also wasn't feeling well and stayed home from church.  She wasn't vomiting, but needed to stay close to the bathroom.  By late afternoon she was feeling some better.

When Cindy brought Gavin home from the ER, she needed popsicles, so I told her I would go to the store and get them.  When I brought them to her, I was planning to just drop them off at the door and leave.  However, Gavin saw me and came running up and grabbed my legs and wanted me to pick him up.  What could a Papa do?  Of course I picked him up.  He hugged my neck hard and put his head down on my shoulder.  I knew I shouldn't, but I took him to his room and sat down and rocked him for about ten minutes.  He just stayed very still with his head on my shoulder.  By that point I figured even if I got sick it was worth it to comfort him.

Sunday night I was feeling tired and went to bed at 11, unusually early for me.  At 12:30 I woke up with horrible reflux.  I was awake all night, came out to the living room and reclined on the couch, half sitting up, but the reflux continued.  It felt like my esophagus was on fire.  By early morning I was making frequent trips to the bathroom, but was still fighting the nausea.  Cheryl got up and said she was feeling fine and went to work.  I called and canceled my appointment for my monthly blood test because I didn't want to expose other immune deficient folks.  The lab is right next to the chemo room and I often wait for the blood test results in one of the chemo chairs. 

I was supposed to meet with school administrators concerning problems with Jimmy's schedule (another involved story by itself), but there was no way I was going to make the noon meeting.  Cheryl left work early and met with the school folks. 

After the meeting, she found out that both Cindy and Jonathan (Gavin's older brother) had also become sick in the middle of the night.  All of us were running mild fevers, but Jonathan's was up to 103.  We were all aching, too.

At mid afternoon, I lost the battle and this virus did what eight rounds of chemo therapy failed to do, the vomiting started.  Cindy, who is pregnant, has morning sickness all the time anyway, but this was even worse for her.  She was getting sick constantly.  Later that evening her doctor had her go to the ER because of concern for the baby.  Cheryl went to take care of the kids.  Unfortunately, it came back to her, too.  So there she is at Cindy's house and all of them are sick and I was in bed barely moving.  Cindy was released after several bags of IVs and anti-nausea shots.  They wanted to keep her, but she wanted to get home knowing everyone was sick.

Cheryl stayed home today.  We both had a bowl of soup and toast tonight for supper, the first I had eaten since Sunday afternoon.  We are no longer tied to the bathroom, but we are totally wiped out.  We dozed off and on all day.  Before she went to bed, she said she was going to try to go to work tomorrow. 

I called Cindy and they are all better now.  Jonathan is going to school tomorrow.  It was short lived, thank God!  But very, very nasty.

Yes, I did lose 9 pounds.  Now I just have to figure out how to get rid of the other 40.  All I know is I don't want to do it this way.

I'm Still Here

Give a man a fish and you feed him for a day. Teach a man how to use Facebook and he won’t bother you for two months!

I am sorry that as of today it has been two months since I updated my Blog. For those who have followed me over the years you know that I seem to do this a couple of times a year. I will be very prolific in my writing for awhile and then I seem to disappear. As I have mentioned before, I am not too sure why this happens but I imagine some shrink would be very happy to try and discover the deep, dark reason.

Well, this time the main reason is Facebook. I am very glad I don’t gamble because I think I must have an addictive personality. When I joined the support site CLL Forum when it first started up and then a little later CLL Christian Friends, it seemed like I was on it every waking moment. If I was out of town teaching, I couldn’t wait to get back and check to see what the latest news was. And then, after a year or two, I started having periods of disappearing there, too. I know that sometimes it just seemed like I needed a break from thinking about cancer 24/7.

Now I am fascinated with Facebook. I had resisted the efforts of some friends to join for quite some time. And then, for some reason that I have already forgotten, I took the plunge. At first I didn’t know what I was doing and I had to have my daughter come over and show me how to use the site. One of the things she showed me was where to find all the free games (Mindjolt - dozens of choices there -, Farkle and Yacht). Yikes! I have been hooked ever since. Why do I feel that I need to keep playing those games until I beat the daily, weekly, or monthly high scores of my friends? I am usually not that competitive. I also have three farms going raising virtual crops and animals. One time my virtual pumpkins rotted on the vine because I didn’t harvest them in time. I was upset!!! The crops were wasted and I had thrown the “money” away that it took to buy the seeds. I would like to reach the highest level on each of the farm games and be able to buy and place the large homes/mansions onto the expanded farm land. Good grief!

I am connected to 91 friends and I actually know all but one (and I may know that person – stinking memory). These are folks from church, my military career, former places of employment, former places we have lived, my leukemia support sites, or family members.

HEALTH UPDATE

So, what is going on with my leukemia/lymphoma? Fortunately, not much. Since I last wrote, I have had two blood tests and everything remained stable except for my platelets which took a huge drop on the last test. I am not too concerned for a couple of reasons. First, previous to that test they had climbed and actually reached the edge of the normal range. Second, even though they dropped into the “stage four” area, it was only one test and we need to see a pattern. Also, they have been in that range many times before. My platelets are the one area of my tests that never seem to be very consistent. I did nick myself shaving this past Sunday morning and it took a very long time to stop bleeding and then started bleeding again almost an hour later. It was only a very small cut. I have a monthly test next Monday, so we will see where they are then.

When I had my IVIg treatment in August, I had a really rotten week after the infusion. I am not sure it was from the infusion with the steroids, but my feet and legs swelled so bad that I couldn’t get my shoes on for several days. I had to keep my legs elevated or they got even worse. I also felt poorly all week. Not exactly sick, but certainly not good.

The feeling puny has been happening off and on for several weeks. I have been getting a lot of headaches and just not wanting to do anything. I will be interested to see if there is anything reflected in next weeks tests. And then the stupid leg itching started again last week. I have no idea why, but it sure is aggravating. Some days are worse than others. No rash this time, just the itching and swelling behind my knees and up my legs. It is only on my upper legs and that is a blessing. So, I am slathering up with the prescription itch cream. OK, enough whining!

I do have a couple of blog entries I want to write very soon. First I am about to kick off my fundraising for the annual Light the Night Leukemia/Lymphoma Society Walk next month. I am a little slow with the kickoff again this year and I was even on one of the organizing committees. Second I really want to update what is going on with our cabin – and it is a lot! Ever see the 1986 movie The Money Pit?

Well I will close for now as I need to go check on my corn, rice, cotton, blueberry and pineapple crops. Even though I have been called a twit a few times in my life, I have no plans to join Twitter!

My MD Anderson Appointment - Medical Update

Several folks have emailed and asked about my appointment, so, here is the update. We got back from New York a week ago today, slept too late on Sunday for the early church service we attend, but did go to the adult Sunday School class I normally teach. I already had someone else to teach as I didn’t know if we would be back on time. I’m glad I did. After we got out at noon, we came home, changed, repacked and headed for Houston for my appointment with my CLL specialist. My grandson, Jonathan, rode with us because Cindy was also heading for Houston for her job. She had a class to teach on Monday and another on Tuesday.

After stopping in Brennan, TX, home of Blue Bell ice cream (they eat all they can and sell the rest), for our traditional ice cream cone, we arrived in Houston. I checked into the International Rotary House that is connected with MD Anderson and we got a free upgrade to a very nice suite. They were running short of the King room I always get (the cheapest), and since we were only there for one night, we got the suite. Sweet. Instead of waiting to get my blood drawn at the hotel where I would have been number 20 something in line, I walked across the skywalk and had my blood drawn at the regular clinic lab that was open on the second floor. There were only two people ahead of me so I was in and out in no time. I had two reasons for this. First, the actual appointment time for the blood draw was Monday morning with a 1 p.m. doctor appointment. By getting it done Sunday, I didn’t have to get up at any particular time and then go and wait a longer time up in the leukemia lab. Second, I didn’t want to wait at the hotel because we were going to be meeting with my nephew, Doug Redfield, and his family at their apartment in Katy, a suburb of Houston. We were to go out to dinner together. He and his family had moved to Houston only the week before. He works in computer programming (I think) and had started a new job with lots of responsibility. He has been working in this field for years.

Before we left our hotel, I called Cindy and she was all checked in at her hotel and had set up her training room for the next morning. She arrived at Doug’s only a minute or two behind us. We visited for a short time and then headed for dinner. After finding out the wait for a table was very long at our first choice, Saltgrass Steakhouse, we drove further on to Ruby Tuesday’s where there was no wait. I think there were eleven of us so we had a large table set up. We had a great time visiting and probably stayed too long at the table. However, there were no patrons waiting and the tip should have made up for it.

Cindy had her traveling babysitter, Tiffany, with her along with Gavin. Since she only had a room with two beds, Jonathan was going to be sleeping on the floor. Since we had a full suite, we had him stay with us and he slept out in the living room on the couch.

The next morning we took our time getting up and around and then went over to the cafeteria in the main building and had breakfast. Since it was close to eleven when we were done, we sat down in the Aquarium area on the first floor and Cheryl read her book. Jonathan and I played a sick game called, “Who Has the Cancer?” As people walked by we tried to figure out if they were a staff member, a family member, a friend, or the patient. Staff was easy because they wore ID badges. The others were sometimes easy, but not always. It really is sobering when you realize that everyone in that huge complex is somehow related to cancer. I pray someday there will be no need for that facility to exist and their motto, “Making Cancer History,” will become a reality.

About noon we went up to the 8th floor where the leukemia clinic resides. I had my vitals taken, paid my co-pay, and waited. Miraculously I was called in at my appointment time. First met with the nurse, as usual, but our regular nurse was on vacation so we saw someone new. Following the normal pattern, we were expecting to next meet with one or two young doctors, who I think are students. But much to our surprise, Dr. Wierda came in and without anyone else observing. He asked how I had been doing and about any symptoms. I told him about the concern I had a couple of months ago with the facial glands really getting large, my local doctor suspecting an infection and putting me on Levaquin, and then the nodes receding again, He confirmed that when the nodes under the ear get large quickly, it usually indicates an infection. He did seem a little surprised both sides had swollen. I then mentioned how weird this disease was because I had stabilized the last couple of months after some rapid progression. He again said that my disease wasn’t following the normal course anyway. He pulled up my blood work history on the computer and immediately noted that my cancer load had doubled in six months, one of the indications for treatment. My neutrophils were also low at 1.0. However, my platelets were all the way up to 135, the highest they have been at their lab in four years. Also, my IgG level was still over 900 and it was exactly three weeks since infusion.

Discussing with me how my lymphocyte count had slowed and then dropped a little the last two blood tests at home, and the fact my platelets were looking really good, he decided no chemo for now. He also said there are so many new treatment options right around the corner that he wouldn't even discuss treatment protocols with me right now because there will be a lot more choices when my time comes. Hmm, for the first time he didn’t mention FCR!! First he said to extend my IVIg infusions to every three months since my counts were up so good, but when I told him the last time I was down in the low 500's at the two month point, he said to go with every two months. He wants the level to be above 700, so he said when it is between 500 and 700 to have the infusion. At almost $14,000 billed to my insurance company for each infusion, I will gladly stretch it out as long as I can. He didn't say anything about a transplant this time which is also very good. He said he could feel "good size" nodes in my neck. No surprise there as I can feel them and see them.

Bottom line, still on watch and wait! Return appointment in six months with the understanding if things started changing with my monthly lab work to contact him.

I have now officially reached the three year anniversary since stopping chemo. If you remember, when we stopped at the end of July 2006, the doctor said it was to give my body a three to six month rest because I had not reached remission and bone marrow biopsy showed I still had 50% cancerous cells in my marrow (but down from 90%). As I have said before, I may not have reached remission, but this intermission has been just about as good. Also, the Great Physician’s time schedule has been much different than what my doctor predicted.

Thank you for your prayers. With your continued prayers, how much longer do you think I will be able to go without more chemotherapy? I wouldn’t even venture to guess because I have been wrong so much. Thank God!

Fishing from My Backyard! Or, How I Spent My Summer Vacation

(No leukemia information in this post)

After a total of 4,350 miles up and back to our new (old) cabin in upstate New York with some extra running around visiting, and another 405 miles down and back to MD Anderson for my appointment with a side trip to Katy, TX, to visit a nephew and his family who just moved there a week ago, we are finally back home. Whew, it’s HOT here in Texas, 105 yesterday, 104 today and tomorrow about the same! It is predicted to be at or over 100 for at least the next ten days and we have had 28 days over 100 so far. It is the hottest summer on record thus far, following the hottest on record last year.

I have lots to write about, but I plan to break it down into a couple of somewhat smaller posts instead of one long novel.

We had a range of emotions on our trip and the first couple of days we even felt a little depressed with some buyer’s remorse over our cabin. However, for this post I will write about only positive things.

The weather was mostly fantastic, from our perspective. Here in Texas we have been experiencing a severe two year drought and hotter summers than normal. While we were at our cabin, the highest temperature was 75, some days never reached the 70’s and the nights were in the 40’s and 50’s. The morning we left, it was 45. Our cabin is on a small lake located up in the hills, so it is even cooler up there. We had a fire in the fireplace several mornings and the space heater going each morning. I would dress in warm sweats in the morning, change to short sleeves in the afternoons and back to sweats in the evening. We heard they only had three days in June that hit 80, and those were before we arrived. It rained every day but one, but also saw periods of sunshine most every day. The rain, sogginess and dampness were beginning to bother Cheryl some by the time we left, but it really didn’t bother me that much. I just wore water shoes out on our soggy lawn. We do plan to buy a humidifier for the cabin when we return for the entire summer next year. Most folks were complaining about how cool it was as they wanted summer temperatures in the 80’s, but for us it was a relief from the Texas summer heat.

We spent lots of time with family. We spent one night on the way and one on the way back with my brother Bob and his wife, Priscilla, in West Chester, Ohio. I told him it was the best bed and breakfast around. He fixed dinner and breakfast both times we stopped and we had a really nice visit with them and their daughters. Our first night in New York State we spent with my brother Jim and his wife, Barb. The next morning we visited with my mother in the nursing home before heading for our cabin. At the cabin, Cheryl’s sister, Diane was waiting with two of her grandchildren to help us unload the U-Haul we had towed up.Even though everything was left from the previous owners, we brought an extra sleeper couch and extra mirrored dresser we had here along with some personal items to make it more our place. We brought our grandson, Jimmy with us and that strong young man was a huge help to us the entire trip. He was extremely well behaved the entire time, even when we were running out and visiting more family and he probably would have rather stayed and fished. We got the U-Haul emptied quickly and Cheryl and Diane set about getting things straightened around and beds made.

Other family that visited our cabin at the lake were my Mom; Jim and Barb and one of their grandsons; my youngest brother, Bill and his adopted daughter, Ruthie; Cheryl’s brothers Randy; Larry; Bill and his wife Diane; Rick and his wife, Cheri and their granddaughter; Cheryl’s sisters Diane and two of her grandchildren; Janet; and Mary Jane and her husband, Dave. On the fourth of July we had a cookout with six of Cheryl’s family members and we played cards from 11:30 in the morning until 11 p.m. (I managed to sneak in a two hour nap on the couch right beside the noisy card table.) We watched the fireworks around the lake from our front picture window while we played cards. We also went and visited with lots of other family at a graduation party for a grand niece and a surprise birthday party for Cheryl’s brother, Bill.

When my brother Bill came up from NYC, he and his daughter spent the night with us and the next day he went to the nursing home where my mom is a resident and entertained the residents. He is a singer, dancer, and actor and has been in at least 11 Broadway shows, many more off-Broadway shows, national and international tours, and has even done his own award-winning cabaret act in NYC. His most recent show, Guys and Dolls, closed the week after he was on the Tony Awards show. Hmm, that made it sound like it was his fault the show closed. It wasn’t. He sang ten songs at the nursing home and even danced with one of the residents who pushed her walker aside and did a little jig with him. He obviously sings very, very well, but his interaction with the residents was very special as he bantered with them, answered their questions, hugged, posed for pictures and just brightened their day. Being close to family was a reason for looking to purchase a summer place and we obviously accomplished that goal.

Another goal we had was to purchase a place on a lake so I could fish. All we could afford was an older cabin on a small lake and I was a little concerned the fishing would not be that good. I was very wrong! There are lots of lily pads around the lake which make great fish habitat (but are a detriment when right in front of the cabin). It is a private lake with no public fishing and the lake association stocks it every few years with small and large mouth black bass.

Our first day was very busy setting up the cabin and cleaning (well, Cheryl did most of the cleaning). The second day was busy shopping for supplies we needed and we drove to my brother’s house with the U-Haul we still had and picked up an entertainment center and TV that had belonged to my folks. They came back with us to help us unload and set it up and then had supper with us. Jimmy had been out a couple of times fishing in a paddle boat that came with the cabin and he had caught some fish and even a turtle. But I still hadn’t been out on the lake and I was getting anxious to go. So on the second evening after my brother and his wife left, Jimmy and I finally went out in the small aluminum row boat that came with the cabin. There is a small sign attached to the back of the boat that says, “U.S. COAST GUARD MAXIMUM CAPACITIES 2 PERSONS OR 300 LBS.” Now Jimmy and I are both, umm, large and we are over that maximum. However, in smaller print it says, “445 lbs. persons, motor, gear 7 H.P. motor.” Since we didn’t have a motor – not allowed on that lake – and only two fishing poles and one tackle box, I calculated that we were pretty much OK. Besides, we were not on the coast where the Coast Guard patrols, I was in the Air Force so maybe it didn’t apply to me, and I am pretty sure my scales lie to me about my weight anyway. My first fish was a yellow perch that was about 8 or 9 inches long, not bad for a perch, which is a pan fish. In West Texas they call other fish perch, but here is what a yellow perch looks like: We decided to row to the other side and try our luck there.

When we got to the middle of the lake, I thought it was a good time to teach Jimmy how to row. He came over to the middle seat where I was and sat down to my left. I started to move to the rear seat where he had been. Of course the boat rocked some. Jimmy did the right thing and leaned to the left to balance the boat. However, he immediately thought, “Oh, oh. Grandpa might fall in I better help him.” He half stood up and leaned/moved over to help me. Over 400 pounds on one side of a boat, a very small boat, a very small boat that doesn’t hold that much, a very small boat that says not to exceed two people or 300 pounds, and physics takes over. The boat leaned to the right. Well perhaps leaned is too weak a term. Actually the seats became vertical to the lake and the sky. Well, the entire boat tipped to the side and went vertical. Now when the vertical pitch occurs, everything that used to be comfortably seated in the boat – oars, fishing poles, life jackets, new tackle box…and occupants – are no longer comfortably seated, but are pitched into cold water. Jimmy went in head first and I gracefully slid off the seat into the water. The boat went back upright but now it was half filled with water and with none of the other items. Jimmy started to panic, but he did grab one of the life jackets. I grabbed all of the other important items – oars, fishing poles that were somehow still floating and tackle box – and got them back in the boat. I also got Jimmy calmed down and told him we would be OK. Jimmy wanted to turn the boat over because he had seen that in a movie. I convinced him that was not a good idea. We held onto the side of the boat and decided we could swim it in. We paddled and kicked for about 15 minutes with some rest periods, but I couldn’t see we were making any real progress. It was getting towards dark and there was nobody else on the lake. The evening was too cool for folks to be sitting outside so no one saw us. We had tried to get back in the boat, but of course it tipped up again. Then I realized if I had Jimmy go to the other side and I held my side down, he might be able to get in. He went over and pulled himself right up and in. Now it was my turn. Since I have had several years of a lot of steroids, I don’t have a lot of muscle strength – too bad they don’t use the type that are supposed to build muscles. Between my weak muscles and my bad back, I couldn’t get myself up and in and Jimmy couldn’t come to help because the boat would tip up again. So, I taught him how to row while I hung on to the side. At first there was lots of splashing of the oars but he soon got the hang of it. Obviously while hanging on to the side of a boat and now hoping no one is watching, one doesn’t think too clearly. I thought Jimmy was pulling too much with his stronger right arm and about every fifth pull of the oars I had to tell him to pull only with his left arm to correct our direction. AFTER we got to shore it dawned on me it was because I was hanging on to the side and creating drag. If I had gone to the rear of the boat it would have been easier for him to row and keep on a straight course. We were almost to the shore to the point were I could stand when I moved to the back of the boat as he came closer to the dock. At that point Cheryl came out and said, “John Wagner, you get out of that water right now!!” She said she saw us from the window with Jimmy rowing and me in the water and immediately had figured out what happened and was trying to lighten the moment. Umm, I didn’t find it that funny at that moment and didn’t realize she was kidding.

Because Jimmy had taken us right into a floating bog that occurs when lilies die and decompose, my shoes and pants were a little, well, a lot dirty and smelly. Even the pockets had filled with muck. Cheryl wanted us to strip in the yard and get the clothes off before coming into the cabin she had been cleaning for two days. I didn’t think that was such a great idea since we hadn’t even met all of the neighbors yet and that was not the initial impression I wanted to make. Actually it wouldn’t even be the last impression I would want to make. We compromised and I stood on the little porch by the door and she wrapped a blanket around me as the clothes came off. I then headed for the shower to warm up.

Of course we have laughed a lot about this since then. Before going out on the boat, I had the foresight to take everything out of my pockets before we went out, except for the very special pocket watch my grandson Jonathan had given me. It stopped working after it filled with water and the circuitry short-circuited and fried. Upon our return yesterday, we were able to find a replacement. Jimmy now has a story to tell his grandchildren some day. For some reason whenever we went fishing after that, Jimmy took the paddle boat while I went in the row boat. We would stay fairly close to each other as we fished and talked. He felt much safer that way.

Over the next week and a half we caught lots of fish. When I was using night-crawlers (large worms) I caught a bullhead that was about 13 inches long and many of some of the largest bluegills and sunfish I have ever seen. That day I was brave and took the camera out with me on the boat and got a picture of one of the bluegills. You can see that is almost as long as the boat seat is wide.

Here are a couple of other pictures I took while out on the lake:Looking towards our cabin. Small red spot, second from right.

Our cabin taken from the same spot as the first picture, but using the zoom feature. You can also see the red storage shed to the right of the cabin.

Sunset on the Lake Gerry.

Our last day there, I caught the largest black bass I have ever caught and landed. As soon as it hit the lure and I hooked it, it did the bass-leap into the air to try and shake the hook. It was fun landing him. I lost one larger when my line broke at Lake LBJ in Texas, but that doesn’t count. Unfortunately I didn’t have my camera with me and since I do catch and release, I didn’t have a stringer or any way to keep it alive so I could get a picture. I estimate that it weighed close to eight pounds and was 23 to 25 inches long.

During our stay, we saw other folks catching large bass and very large pickerel. For the 4th of July, the Lake Association held a fishing contest. I didn’t hear the winners for the adult division, but the two largest winners for youth went to a little girl and a little boy, both about 7 years old. One caught a 23 inch black bass and the other caught a 21 inch pickerel. One young man caught a 13 inch crappie. I didn’t enter the contest because of all the company we were having. One night it was a little late to go out in the boat, so I sat in a lawn chair and fished from shore over towards where my neighbor had cleared out his lily pads and right on the edge of ours. I caught a few fish. I came in and said to Cheryl, “How great is this? Fishing from my own back yard!” Obviously my “good fishing goal” was filled at this lake. I can’t wait to get back there next year and do lots more fishing. I will be using an electric trolling motor which is allowed on the lake. I plan to take a tape measure and fish scale, too. Oh, and maybe take a waterproof camera or at least a waterproof bag for my camera.

Later I’ll talk about some of the frustrating things of our money-pit…uh, summer cabin.

My Dad had CLL

My dad had CLL and survived with it for over 20 years. He died in November 2003, just 15 months before my own diagnosis with CLL. This Father’s Day has me reflecting again on his life and the influence he had on me. I wish I knew more of the details of his disease, but I don’t for a few reasons. First, Mom and Dad were the type of folks who never questioned doctors and never asked questions of doctors. Second, we were in Germany when he was diagnosed and lived in Texas the rest of the time while they resided in upstate NY. Most of the information we got, came from whatever information my oldest brother, Jim, could find out from the doctors. In the beginning, that wasn’t too much because Dad didn’t think it was necessary. We got lots more information near the end, because Jim and his wife, Barb, became his primary care giver. They did a lot for them over the years, and still do for Mom. Third, we didn’t have Internet for research until the late 90’s, and then I really didn’t know how to research back then. I still feel a little guilty for not being that informed. I wish I had known to give him the best advice there is to give to someone with CLL: go see a CLL specialist for a second opinion and not just a general oncologist or hematologist!

Mom and Dad came down to visit us most every winter, sometimes for a few months at a time. I always suggested he bring his medical records when he came, but he never did. He also never got copies of his tests. I remember when he was first getting chemo, I asked him what kind and he said the kind that goes into your arm. He didn’t know the name, just that it was chemo. We rarely called it CLL, just “leukemia.”

He was one tough guy. In the early 90’s, he was told there was nothing more they could do for him. I guess he didn’t listen. He went into what we think was a spontaneous remission and the leukemia stayed in the background for many more years. However, he was assaulted with several more cancers. He had multiple skin cancers taken off, and no, I don’t know which kind. Then he had thyroid cancer and had surgery and radiation. Also throat cancer and he lost his voice, except for a hoarse whisper, for several years. I think that bothered him more than anything. He suffered seizures, but medication controlled them. And he had a horribly bad heart. The last couple of years they told him he only had 10% of one artery open and all the rest were blocked. He took nitroglycerin pills just to get the trash to the curb his last year.

Now, you would think that with all that going on, he was an invalid confined to bed. But you would be wrong. Except for that last year he was very active. He did retire a little earlier than he wanted from his job as the shoe designer for Norwich Shoe Company. They made shoes for Tom McCann, Hush Puppies, several other brands and many discount stores – same shoes, different labels. After retirement, he bought a large boat, large camping trailer and they parked it up on the Black River and he fished there and Lake Ontario all summer for many years. He also played golf most of the year unless there was snow on the ground and then still would if it was only a little snow (used a different color ball). The last few years his heart was too bad to play 18 holes but he would play a few. And then he would also go to the indoor driving range and hit a few buckets. He didn’t want anything slowing him down.

He was always surprising us. None of us were sure he would make it to their 50th wedding anniversary. Then, when we were planning their 60th anniversary celebration, we thought he was just willing himself to get to it. May 30, 2003, five and half months before he died, Mom and Dad celebrated their 62nd anniversary!
One time when he was on hospice, he drove down to Texas to visit us! He just told them he was going to be gone for a little while. They removed him from hospice after 18 months that time.

When the leukemia revved up again those last several years, he would get pneumonia multiple times a year and it came on very, very quickly. He could be fine and then within a half hour be running a very high fever – sometimes 105 degrees or more. Night sweats were terrible for him. Sometimes they had to change the sheets and pillows more than once a night. Mom always tried to make sure someone went with him out on his boat when he was fishing, but she wasn’t always successful. She even went out with him sometimes and she never used to do that.

His last year was the only year when he really couldn’t do much of anything. He lost a lot of weight and for the first time actually looked sick. Mom’s 89th birthday was that October 25th, just a couple of weeks before he passed and even though he was quite ill, he insisted on taking her to their favorite little restaurant. So, with Jim and Barb’s help, he took her there. I understand they had to help him walk in, but he made it.

Because I was always careful with vacation time, both while in the military and after in regular jobs, we were able to go and see them often. In fact we went up three times the year he died and we were able to spend time with him less than a month before he died. All four of us brothers were there then. But what about the years when he wasn’t sick? Here are a few of the things I remember about him.

Dad was a man of many, many, natural talents. Dad never finished high school. His own father died when he was only 12 and as soon as he could, he quit school and went to work to help support his family. He was a very, very hard worker. For most of my younger years he worked two jobs. He worked in the shoe factory during the day and at a machine shop nights and weekends. He didn’t have a car during those years, either. Apparently they had just gotten their first car before I was born, and then when I was only six months old, I got severe pneumonia and was in the hospital for quite awhile. They had to sell the car to pay hospital bills. He would walk home for lunch, lie down on the couch for about 15 minutes and then head back to work. He would come home for supper that mom would have ready, eat and then walk to his second job. He would get home about midnight. When he started at the shoe factory, he started in the warehouse moving boxes around and loading trucks (I did that for two summers, too – yuck!). Then he started repairing the machines they used making the shoes, a natural talent. As he watched them working the machines he figured he could do that and since it was “piece work,” getting paid for the amount done, he thought he could make more doing that and transferred to that. (I also worked on a machine gluing down the leather underneath where the heal goes – double yuck. I still have scars from the hot glue.) He watched the Pattern Man cutting out the patterns from the designer’s drawings and figured he could do that for more money. He became a Pattern Man for many years. At some point during that time frame, the second job at the machine tool shop finally was able to go away. After all those years cutting out patterns for the designer’s he decided to give designing a go. Since he had natural art ability, he could paint and draw wonderfully, he made an excellent designer. He was one of several designers for Endicott Johnson Shoe Company. When I was a senior in high school, he was hired by Norwich Shoe Company as their sole designer – well, I should say only designer because he designed the whole shoe! Ha! He did that for about 20 years. Amazingly the sample shoes through the years seemed to always be made in the sizes all of us boys wore. It still bothers me to pay for shoes.

While he was still working for Endicott Johnson Shoes, he decided to open a sport store which he called Don’s Sport Shop. He carried mostly hunting and fishing goods, but other sporting goods and shoes, too. At Christmas he branched out into a fairly large toy section. Mom worked it during the day and he worked it evenings and Saturdays. But they were always closed on Sundays. He had a good business going, but not much business sense. He was much too kind! He gave anyone credit who asked and just kept track on index cards. Many never paid. When kids came in he was always giving them free stuff for fishing. Anyone who asked for a discount got one. Finally after a few years they went out of business. They held an auction and Mom cried through most of it before finally leaving. What didn’t sell got moved to our cellar and he slowly sold it to friends over the years. He refused to declare bankruptcy and slowly paid all of his merchandise creditors off even though it took him many years. He taught me a lot of great lessons doing that.

Now, you would think Dad was working so much he wouldn’t have had time for his boys. He did work a lot, but he still did a lot with us. He coached little league, often took us out with him when he went rabbit hunting. Took us to the town dump where he got target practice shooting rats. One year he took my younger brother and my scout troop to summer camp for the week.

He absolutely loved Christmas and was always the biggest kid there on Christmas morning. He was usually the one to wake us up before dawn on Christmas morning. Sometimes he would have to go to work for a little while and then Santa would show up. Too bad Dad was never there to see him. I remember one Christmas morning he had us all outside to see Santa fly across the sky. He had me convinced I could see him.

Dad and I spent hours and hours fishing. I was the only one of the boys who enjoyed fishing. We mostly fished streams for trout but also some bass and pike. Later in life I went salmon fishing with him.

I cherish the fishing memories. He taught me fly fishing, and how to use all kinds of artificial lures, live minnows, salted minnows, dobson, crawfish, worms and night-crawlers. He also taught me how to go carp fishing with a bow and arrow with a special reel attached. There weren’t too many aspects of freshwater fishing he didn’t teach me. April 1st was always a very special day when I was growing up. That was the first day of trout season in New York State. School? Well, if April 1st fell on a school day, I was allowed to play hooky. It should have been a school holiday, anyway. I would start dreaming of that day for several weeks before the big day. That night was spent in restless sleep of anticipation. Long before first light dad would quietly come to my room to wake me up. That was the only day of the year, other than Christmas, when I was out of bed in seconds. We would quietly get ready and leave without disturbing anyone else. Sometimes we ate breakfast at home, but often stopped at a diner where other fishermen had gathered. We never went to the same stream we usually fished the rest of the year, because this was a special day and special days called for special streams. We usually drove for a couple of hours to get to whatever special place dad had picked out. One never knew what the weather would be like that time of year, but usually it was very, very cold. I remember a couple of times trying to find a stream that wasn’t frozen over. I didn’t care. Many times I didn’t catch anything that day. I didn’t care. Dad almost always caught something, I was proud. One time I watched as he slipped, fell and slid down a dam into the water. I laughed. He didn’t care. He laughed too. And shivered.

Dad and me probably around the summer of 1955 or so.

Dad was a natural at all sports. As a little kid I remember going and watching him play baseball. Almost every year he shot a deer. One year while bow hunting, he shot two with one arrow. There was a doe standing behind a buck and the arrow went through the buck’s neck and into the doe. Oops. When I was a young teen, I discovered he had been a “pin boy” setting up the pins at a bowling alley when he was younger, but he had never been bowling. I was on a junior league and was pretty good, so I talked him into going with me because I thought I could finally beat him at something. I think my average was about 135 or so. The first time he ever bowled, he bowled a 180. I lost. Then he joined two leagues. When he moved to the Norwich Shoe Company, they talked him into playing in the golf tournament during their annual picnic and clam bake. He had never even held a golf club before. He kept telling them he didn’t want to, but the owner of the company, Mr. Weiman, insisted he play. He won the tournament and was hooked for life. I’m not sure Mom ever forgave Mr. Weiman. During another tournament he made a hole-in-one and was so excited because he knew he had won a trip to Scotland because he had purchased an “insurance” that paid off with the trip for a certified hole-in-one. He came home all excited to tell Mom. She turned pale. She never sent in the $100 fee because she thought it a waste of money. I think I heard Dad hollering all the way to Berlin where I was stationed. Dad filled out new paperwork and Mom sent it in. A year or two later, Dad got another hole-in-one. They went to Scotland. He played St. Andrews. They stayed married.

I could go on and on, but I think you have an idea of what he was like. He was far from perfect and certainly had his faults, but he always took care of his family. He loved us and we loved him.

I hope I am able to keep fighting my own CLL as long as he did and with the grace he did. Maybe if I can go 20 years they will have a cure. If not, it will still have been a nice long life. Keep praying.

I wish any fathers reading this a very Happy Father’s Day. If you have lost your own father, I hope you have wonderful memories of him as I do of my father.