5-21-06

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

May 21st, 2006

I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

Psalm 16:8

When I said, "My foot is slipping," your love, O Lord, supported me.

When anxiety was great within me, your consolation brought joy to my soul.

Psalm 94:18-19

“Frustrated Incorporated”, is a phrase from some old song I can't remember, but the phrase has popped into my head a lot lately for I am feeling frustrated. My goal was to return to the classroom this week, but my doctor had a long, serious talk with me this past Thursday and during which she strongly objected to me returning this soon. She feels my immune system is still weak and going back to the classroom poses too much of a risk for another infection. I attempted to change her decision by arguing back reasons I could return; “I feel better”, “I am so careful at work”, “I didn't get sick at work…I got sick on vacation.”, etc. My resistance to her decision only fueled her insistency as she came back with, “You don't want another serious infection, you could have died from this last one!” and the toughest one, “John, you have cancer…you have to accept it.” Her comment about how I could have died hit me hard as I immediately thought of my family, which is my main reason for living and fighting to keep living. The“You have cancer…” comment, however, stunned me. Even though I have been fighting cancer for twelve years now, it was like she was telling me for the first time. The seriousness with which she said those words, the look in her eyes, combined with my thoughts about what I have just been through made those words very hard to hear. Her words echoed in my head for the next couple of days. I am clinging to verses such as Psalm 16:8 above, but sadly…I am shaken. I don't think those words shook me like that since July of 1994 when I was first diagnosed. I thought by now I had accepted that I have cancer, but maybe I really haven't. In times like these when cancer has partial control over how I live my life and the choices I make, acceptance is much more difficult. Teaching is what I love to do. A teacher is part of who I am. I just love being around the kids and being in the high school setting. So it is a real blow to be told (again) that I can't return to the classroom. It is hard to accept restrictions put on my life as a result of my cancer. Focusing on the positive, however, my doctor said I can continue to drop by and visit my classes to help out and to see how they are doing. I am grateful for this and plan to visit my classes often. When I look at the big picture I know the best thing for me is to take the rest of the school year off and to focus on getting my immune system back up to strength so I can teach in September. The most important reason for listening to my doctor, however, is so I can continue to be here for my family. I need to be here for them, which means I need to make wise decisions concerning my health and minimize risks that could take me away from them. So I continue to work towards being at peace with my doctor's decision.

A bend in the road is not the end of the road... unless you fail to make the turn. ~Author Unknown

The past couple of months have been tough on my family. A major concern is how the boys are handling everything. We have seen things in them that reflect the stress they are feeling. One of the things I am intending to do since I have some extra time is to spend more time with my boys and to try and take each one of them away for some one-on-one time. I just want to be able to hang out, have fun, and talk with my boys. This past Friday and Saturday my youngest son and I went out to my in-laws' lake place. We fished, hiked, and just hung out and talked. It was a wonderful time.

When I was hiking with my youngest son I began to think back to twelve years ago when I was first diagnosed and told those scary words, “You have cancer…” One of the things I did a week or so after I was diagnosed was to take my oldest son camping and fishing at Mt. Rainier. Now, twelve years later, I am taking my youngest son on a similar experience after I was reminded of those scary words this past week. He wasn't even one at the time of my diagnosis. They sure grow up fast. Check out the photos I dug up when I returned from my weekend:

I know I have said this before in a journal entry, but I hope everyone with kids will always remember to put them first. They grow up so fast and our time with them is so short. If your kid comes up to you when you are in the middle of something and says, “Hey dad (or mom), let's play….”, stop what you are doing and play…or talk…or listen. When you are with them, really ‘be there'…kids know when you are distracted. Trust me, my boys have called me on it.

To summarize my health status as of right now, my most recent platelet counts went from 44,000 to 87,000. Excellent news! My bowel movements are normal except for a couple episodes of diarrhea. I am still on a restricted lactose free diet, but am hoping to move off of it soon. One of the medications I take, FK-506, which is a immunosuppressant to control GVH has a side effect of lowering your magnesium levels. Usually, I take magnesium tablets to compensate for this. The tablets, however, can cause diarrhea. As a result they have to give me IV magnesium twice a week, which means I will have to keep my Pick Line port for a little while longer. Once my GI Tract is able to handle the magnesium tablets I am hoping to have the line removed. My hematocrit, which reflects the red blood cell level divided by hemoglobin level, has done a slow decrease. It was at 37 and has slowly dropped to 32. Normal is between 35 and 42. Below 35 you are considered anemic, above 42 and you are a professional cyclist. My doctor said several factors affect this number: medications, infections, CLL. The physical symptoms of this are fatigue. Fatigue has been a factor for me. I look forward to moving through this. I dislike the cloudy, tired feeling I have a lot of the time. I am continuing to regain my strength through walking, cycling, and lifting weights. I am not getting my strength back and weight back as quickly as I would like, but I know it will come.

“The Lord gave you a body that can stand most anything. It's your mind you have to convince.” Vince Lombardi

Specific Prayer Requests:

• Peace with not being able to return to work and ability to maintain my connection with my students.

• Peace and comfort in the heart of Michelle and the boys.

• Michelle's sore throat…really hurting her and not responding well to antibiotics.

• Hematocrit count goes up.

• GI Tract symptoms continue to stay stable as I transition to a regular diet.

• Fatigue subsides and my strength and weight return to normal.

• Continue my return to full health so I can continue being with my family and can return to the classroom in September.

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