Sunday, June 21, 2009

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.

Tuesday, June 16, 2009

Health Update - More Weirdness

Since I am going to be up all night anyway from my IVIg treatment with steroids yesterday, I thought I would give a health update. I thought I had mentioned that my lymph nodes have been swelling up larger and larger for the last month or so and that a new group on both sides of my face had popped up, but glancing back through the recent entries, I don’t see anything. I guess I just talked about it on cllforum and cllcfriends. Anyway, I had blood work last week and I just knew my last report of the slow down in my accelerating cancer load was going to be only temporary and I was going to see a large gain. The day or so before the blood test the nodes really felt quite large to me and one on the side of my neck was actually sore and all were uncomfortable when I lay down at night.

Imagine my shock when both the white count and the absolute lymph count actually went down! Now don’t get me wrong, that is terrific news, but I was quite shocked. Oh, the platelets did drop too, which is not the direction I want, but still just above 100, so that is still good. When Thomas, the nurse, showed me my results, I voiced my surprise. He asked why I was surprised and I told him since the nodes along side my face had popped up and the ones in my neck were quite a bit bigger in the last several weeks and one even was sore, I expected the counts to have gone up a lot. He visually looked at my neck and said he could see they were up and went to talk to the doc. He came back and said the doc wanted the PA to look at me.

This was the first time I had seen the PA. He said he was new to the office, but had been with the group for seven years. Anyway he was very, very thorough in his exam, poking and prodding everywhere, listening to my lungs, checking ears and throat, etc. He said my nodes were obviously swollen, but since he had never seen me before he didn't know what to compare them with. So, he went and got the doc.

My doc came in and said yep, they were bigger (at least I knew what I was talking about). Since I had a low grade fever (didn't know I did), he ordered a chest X-ray and put me on Levaquin for a week. He thought I had an infection somewhere. Since I had pneumonia and the E. coli lung infection last year, both without symptoms, he wanted to check out the lungs. He said if the nodes were still up when I was to see him yesterday for the scheduled appointment, he might order a CT scan to see if the other internal nodes had swollen that much.

Now, with the Levaquin, I was supposed to stay out of the sun, be careful of tendinitis and watch my blood sugar as this antibiotic can raise the blood sugar for folks with diabetes. Oh and it also can cause nightmares and it really did, some very strange, scary ones that woke me up in the middle of the night. Ah the joys of CLL/SLL. Always gives me something to think about (write about) and new experiences at unexpected times.

To tell you the truth, I thought he was wrong. I really didn’t think I had an infection; especially when I didn’t receive a call last week with any bad news about the chest X-ray. However my lymph nodes did start shrinking and by yesterday they were almost back to the way they had been – not normal but not hugely swollen either. The ones on my face are still there, but about like the rest.

I asked him why, if I had an infection, the white cell count actually went down instead of going way up. He said it doesn’t always correlate that way and that I had a history of not always reacting in the “normal” way. So, apparently I had another mystery infection of some type. Now that the Levaquin has all been taken it will be interesting to see if the nodes swell back up.

My IgG levels did plummet as expected so I got my scheduled IVIg infusion. However, even that didn’t go exactly right. A new fellow mixed the lovely potion. The last several times I have been getting stuff premixed from the supplier, but not today. It had to be mixed in the office. He somehow broke a black rubber or plastic seal inside the HUGE bottle (instead of six little bottles). There were little black pieces of the seal floating around in the solution. He couldn't throw it out as it costs many thousands of dollars, and I guess he couldn't transfer it. So the nurses who were temporarily out at my location, conferred and then put a filter midway in my infusion line. Of course the filters kept clogging and stopping the pump. They kept changing filters until they ran out about quarter to five. The nurse assigned to me couldn't see any more pieces (neither could I), so she just removed the filter from the line, turned up the speed and finished me off by office closing time. It was just a very, very long 8 hour day in the infusion chair. I hope my regular crew is back next time.

I am calling a halt to all the weirdness for at least a month. We are getting ready to go on our vacation that we have been looking forward to with great anticipation. We don’t want anything interfering with our preparations or our actual trip.

Hm, no weirdness in my life. Figure the odds!

Friday, June 12, 2009

What Would You Do to Save a Life?

How far would you go to save someone's life? Would your answer differ if it was to save the life of a family member? A friend? An acquaintance? What about saving the life of a complete stranger?

If we were talking about a family member, I imagine most people would answer, “I would do anything I could.” But it might take more thinking when it came to a stranger and I imagine there might be limits for many people. Not long ago I read about a lady who donated a kidney to another lady she barely knew. I marveled at the heroics of the situation and that was why it was newsworthy. We have all read about heroic deeds. Someone rushing into a burning building to save strangers; jumping into the water to save a drowning person; passengers, who were strangers, banding together to thwart another terrorist attack. Perhaps we wondered if we could be as brave.

Perhaps you don’t know, or have forgotten that there are things "ordinary" folks can do that aren’t as extreme as donating a kidney or rushing into a burning building or some other such deed, but are just as critical in saving a life. You can be a hero to someone! One of those heroic deeds is the “simple” act of donating blood. With all the new rules in fairly recent years, many folks have been excluded from doing that. Therefore it is even more critical for those who can, to do so. Check out the Red Cross website for the very long list of exclusions to blood donations. CLICK HERE My wife and I used to give regularly, but since we lived in Germany from 1980 to 1985 while in the military, neither we nor our girls can donate. Of course they wouldn’t want mine now anyway. Now that I receive regular IVIg infusions to boost my immunity, I truly understand how important it is that folks donate. IVIg contains antibodies that are extracted from the plasma of 8,000 to 10,000 blood donors. Is it any wonder why this stuff is so very expensive and is often in short supply? Someday I may also need transfusions of red cells or perhaps platelets or both. These are only available through the generosity of blood donors.

Another thing people can do to save a life is a fairly simple initial step, but does take more commitment to follow through. That is to register to be a bone marrow donor. Now, I can almost see many of my readers scrunching up their face and saying, “ouch, ouch, ouch, no, no, no.” Before I understood how it is done, I would have reacted the same way. In reality, the way they do it now, there is no pain during the donation because you are either totally knocked out, or you are given a block. Also, most times now it is not actually the marrow that is harvested, but stem cells from your blood. You are given injections to make your bone marrow produce more stem cells and get them circulating in your blood and then you donate by having your blood drawn out of one arm, the blood is circulated through a machine where the stem cells are extracted and then your blood is put back into you through your other arm. True it is not as simple as donating a pint of blood, but the process saves lives! Many folks, including young children, have died while waiting for a bone marrow donor who was a match for them. You can read about the myths and facts of being a donor by CLICKING HERE.

It costs about 100 dollars to add someone to the registry and surprisingly you are normally charged $52 to become a registered donor. However, if you sign up now, registration is free between now and June 22, or until the special funding runs out. However, it never costs you any money for the actual donation of stem cells or marrow.

It is easy to join:

1. Confirm you meet basic registry guidelines.
2. Complete the online form and order your registration kit. This step will take about 30 minutes.
3. A special kit will be mailed to you. Follow the instructions in your kit to collect four swabs of your cheek cells and return the kit.

Then, if you are a match with anyone who is waiting for a transplant, you will be contacted and you still have the opportunity to opt out. You will be screened further for any health problems before donating. At any point in the process, you can decline without penalty. Find more information at .

Several of my fellow bloggers have written recently about being a marrow donator. Andy from the UK is heavily involved in getting people registered and has written much on the subject. Brian Koffman, a physician with CLL, has a recent entry and Stacie has written a couple of times lately. Their blogs are listed over on the right. Shari Howerton wrote an extremely touching entry titled “Why would anyone not register?” In that entry she also wrote about the donation of her step daughter’s organs after she died in August of 2003 of a severe asthma attack that went into cardiac arrest. I told her I was going to put a link to that on my blog and you can read her entry by CLICKING HERE.

Here are two videos, less than a minute each that might help motivate you. The second one shows how easy it is to take and submit your cheek swabs.

After watching these videos, won’t you please check out and see if you might qualify? (There is also a link on that page for information on donating umbilical cord blood. This is another way for stem cells to be harvested for transplant.)

You could be the person who is the only match for someone terribly ill. You might be their only chance at life. You might be that person who can save little Sydney Gavan's life. Won’t you take that step? Be a hero to someone. If you do register for the first time, I would appreciate it if you would leave a comment here on this blog. Thanks.

Wednesday, June 10, 2009

Deja Vous All Over Again

Last week, June 2, was Gavin’s first birthday. However, the night before we received a big surprise. I haven’t posted it here because I didn’t know if I had permission yet and I kept forgetting to ask. I got permission earlier this evening.

Cindy, Jonathan and Gavin came over for a surprise visit on Monday evening, June 1st. Jonathan was wearing his special shirt. This is a shirt we saw him wear only once before. In fact, the last time we saw it was about 20 months ago. This time he was wearing a jacket over it, but I noticed it almost immediately. Nanny didn't see it for a long time because she was too busy giving kisses and loving on Gavin. She didn't notice for a while even when Jonathan took his jacket off and was dancing around in front of her. Although Jonathan is taller, the shirt still fits him.

Here is the front of his shirt:
Here is the back of his shirt:

Yep, before Gavin was a year old and before Jonathan is 15, she has another bun in the oven; she’s in a family way; she has a miracle in the making; she’s eating for two; she’s in a delicate condition; she’s on stork watch; she’s with child; she’s up the duff; she’s in a fix; she had a conception malfunction; she’s preggers; she’s crazy! Well you get the picture by now. Even a U.S. congressman could understand that…I think. Actually we are happy for her. She and Corbin are happy too even though this was unplanned and a surprise for them. We know how they feel as our two girls, Cindy and Cheri, are only 15 months apart and Gavin and the new baby will be 20 months apart.

Primarily we are concerned because she had such a difficult time being pregnant with Gavin. Not only was she sick a lot, extremely uncomfortable, contractions for weeks before his birth, but it also was causing her some heart problems. She has already had two heart surgeries and we are praying this won’t cause more strain or damage. We covet your prayers too, if you are so inclined.

Their due date is February 10. They are hoping for a girl this time and have picked out the name, Grace.

Gavin doesn’t know what to think. But grandma assured him that Nanny and Papa have more than enough love for all the grandkids.

Saturday, June 06, 2009

The "New Normal"

I said it to myself again today. “I wish I could feel normal again.” In reality, I have said that, or a variation of that phrase, many times throughout my life. When I was 12 years old, I had a severe case of infectious mononucleosis. In fact my doctor said he had never heard of anyone with a white cell count that high. My spleen was swollen and the lymph nodes around my neck and chin were huge. Anyone with CLL or some of the other blood cancers knows those are some of the same symptoms of those diseases. In fact, shortly before my CLL / SLL diagnosis I had been noticing the swollen neck nodes and the thought had briefly occurred to me that perhaps I had Mono again.

When I was 12, I was ill for nearly nine months, including throughout the entire summer months. Through my open windows the sounds of summer flooded my room and the summer breezes played with my bedroom window curtains. I could hear other kids laughing, playing and having a good time, but I couldn’t go outside and participate in the joys of summer. Sometimes I didn’t know if I had the strength to make the round trip from my bed to the bathroom right next to my bedroom. Later in the summer I spent a few days over at my older brother, Jim’s house. My sister-in-law, Barb, is a registered nurse and mom felt comfortable putting me in her hands. Barb placed a chair outside and I would sit in the sun and enjoy the warm, healing rays of the sun on my face. I would dream of going fishing in the creek not far from there and I just wanted to feel normal again. That next school year I missed over 90 days of school. I had work brought home to me and did school work in bed. When I started going back to school I remember some days feeling like I could barely make it through the day and I wanted to feel normal, like the other kids. Slowly I started getting stronger, but my doctor still didn’t want me taking part in gym class (PE). I think it was because of the spleen, but I am not sure. Then, when I was 14, I got Mono again! In fact, I got it again at 16, 18, 20, and around 22 when I was in the Air Force. Each time was not as severe as the time before and I didn’t feel as ill. I remember telling the AF doctor that I had Mono. He asked why I thought that and I told him how often I had been ill with it. He told me it was impossible as you could only get it one time. At my insistence he tested me and, yep, I had a mild case again. That was not the last time I had a doctor who was wrong. Through those teen and early 20 years, I had several other health problems and I remember the times when I was feeling down and wondering what it would be like to feel normal again.

But then, starting in my mid 20’s, I was really well for about twenty years! I WAS normal – well, health-wise, anyway. But, I don’t remember feeling grateful for feeling normal again. I took it for granted. Is that normal? So many times I had lamented not feeling well and there I was doing great and not rejoicing and savoring it. Perhaps I was just too busy living life, I don’t know. Oh, there was a lot I was savoring and rejoicing over. I marveled at the birth of our girls, basked in the love of our little family unit, and gloried in the beauty of God’s world as we lived in Germany and traveled throughout Europe from the Netherlands to Belgium to Austria to Switzerland to Italy. For part of the years we lived in Europe I worked on top of a mountain and never tired of the wonderful scenery that greeted me every day. I liked my job and felt I was truly making a difference. But, I don’t remember marveling at how well I felt during those years.

On the day of my 40th birthday, we discovered a heart problem. I remember joking that day with either the nurse or the doctor that I should have taken out the extended warranty on my body when I was a kid. If you do that on a car, it rarely breaks down, but if you don’t, it breaks down right after the regular warranty runs out. I spent months of being told not to climb steps unnecessarily and not to run for physical exercise. That also meant I had to walk for the military physical fitness tests. But instead of running a mile, I had to walk three miles in a certain amount of time, and it was a very brisk pace. I actually found it harder than running. Again, I was wondering what it would be like to feel normal again and wondering if I would. Well after about a year of trying different medications and different combinations of medicines the problem was pretty much under control. If I ever forgot to take the meds, I knew it within a few hours. Of course, like many meds they had their own side effects. But for the most part, I was feeling well again and I went back to taking life for granted.

About the time I retired from the Air Force, I started having trouble with my feet and legs hurting. Special inserts in the shoes and steroid shots in my heel helped but I still had some trouble walking without pain. Of course I started grumbling again, but even so I did feel well for the most part.

And then five years ago the big bombs started falling. First came the diagnosis of diabetes in April of 2004, then a bad traffic accident in August of 2004 with a resulting injured back, and then the CLL/SLL in March/April of 2005. Those were the head-spinning, emotional rollercoaster ride days. You can read all about that time in my life in the first several posts I made to this blog in November of 2005.

One word of counsel and encouragement that is often given on our support sites to folks newly diagnosed with this CLL is that even though it is difficult emotionally to come to terms with the diagnosis that eventually things will settle down. Yes, your life has changed forever, but you will eventually settle down into your “new normal.” The only problem I see is that we still occasionally mourn the loss of our old normal. At least I do.

So, what is this “new normal?” What does it mean? Actually it varies from person to person. Because just as this leukemia and/or lymphoma affects people very differently, the “new normal” depends on the impact the disease has on one’s life. For some it is many years of “watch and wait.” Watching the disease and waiting for it to progress. Many call it watch and worry. For some very fortunate folks it never does progress. For some folks I have known, the disease was so progressed at time of diagnosis that they had to start treatment immediately. Some who have done that were fortunate to go into a remission and go into a period of watch and wait for many years, but knowing always the day would come when the remission would be over.

I had eight rounds of treatment beginning a little less than a year after I was diagnosed. Although I didn’t reach remission, I have been in the Watch and Wait mode for almost three years now. Here are some of the things I see as now being normal for me:
* Doctor visits are a routine and regular part of my life
* Blood test results are extremely important and tell me how I “really” am doing, even though they only tell a small part of the story
* X-rays, other types of scans, and bone marrow biopsies to see what is going on inside because how I look on the outside has no bearing on what is really happening. People tell me all the time how well I look or say, “but you don’t look sick.”
* Feeling that slight rise in tension before monthly blood tests and doctor appointments when I know things are progressing but not knowing how much
* Fatigue! Needing naps during the day, often within an hour or two of waking up in the morning
* No stamina for doing any physical labor
* Constantly looking for any sign of infection
* Wondering if every new twinge, lump, pain, or hangnail has something to do with the cancer growing
* Obsessing over newly swollen nodes and wondering about their true meaning
* Watching for signs of illness in other people so I can avoid them
* Changing checkout lanes in the store if someone is coughing in line
* After church services remembering to wash my hands after shaking hands with lots of people who may have germs that wouldn’t harm someone with a normal immune system
* Knowing more chemotherapy is definitely in my future, but not knowing when
* Deciding what will be the best treatment when it is time to treat
* Thinking and praying about bone marrow/stem cell transplant and wondering if that is the way to go
* Being hesitant to commit to anything long term, not knowing if my health would allow it
* Sitting all day in the infusion chair every few weeks getting a boost to my immune system through the generous blood donations of thousands of other people (IVIg treatments)
* Wondering if all the huge weight gain is due to steroids and swelling internal lymph nodes or if it is just from overeating and sitting on my butt most of the day. Hmm, guess I probably know the main reason.
* "Chemo-brain" - having terrible short term memory (I came back and added this one several hours after I published this post!)
* Wondering why I keep getting this stupid itching on my legs that tries to make a comeback every few months. Sometimes explainable, most times not.
* Having great plans for everything I think I will accomplish tomorrow and then the reality of rarely even coming close to accomplishing it all
* Watching other people, whom I have felt close to through my Internet support sites, lose their battle with this disease and feeling the tremendous sense of sadness and loss
* Meeting so many wonderful, brave folks on those same support sites
* Learning to trust God more and learning over and over how to just put it all in His hands. Like a verse I studied last week when a father of a young boy came to Jesus for help, "I do believe; help me overcome my unbelief!" In other words, I do believe, but I know I don’t have total perfect faith and I have some doubts I must overcome with His help.

So, when I said today, “I wish I could feel normal again,” I am already feeling normal. Normal for me. Normal for right now. This is my new normal. Someday I may wish I had THIS normal back.

So, for all those folks who shake their heads and say about me, “He’s just not normal.” Yes I am!!