November 28, 2007

Kaiser released me from the hospital last night. I am very stable, all my meds are taken orally, and the lung biopsy site is doing very well. The largest challenge is that there is substantial pain at and around the biopsy site.

The plan now is that a brain biopsy could easily not be needed. I will call on Thursday evening to get results of the several tests from the lung biopsy. I am being pre admitted into Kaiser early Friday morning. If any biopsy is needed, then we’re all set up. If no biopsy is needed the appointment will be canceled. This plan provides the fasted way to provide the best care.

Barbara, many friends, and I are continuing to pray for clarity for the medical staff, God’s will and my healing.

I have been wrestling with some important truths. I’ll be sharing something when my situation settles down.

November 27, 2007

The lung biopsy is completed. There is no evidence of pneumothorax (air leaking into the lung). There is also no evidence of bleeding in the lung. Both of these outcomes are definitely good things.

The surgeon removed several good pieces of tissue for analysis. There will be some samples for pathology to research possible cancers and abnormalities. Blood cultures are being worked up to determine if there are any infections present. Several of the tests will take 3 days to complete so we will have to wait until Friday for diagnosis.

I’m going to rest now. The doctor went in through the back, over the scapula (shoulder blade) then immediately under a rim. That area is getting a little sore.

November 26,2007

We thought a biopsy on the mass in my lung would be performed today but it didn’t happen. So far OHSU sent all their x-ray, MRI, CT SCAN, and CAT SCAN films to KAISER from the past several months. The Kaiser and OHSU doctors had a conference to set a course of action.

I will stop eating or drinking at midnight tonight. At four am I will receive platelets, either one or two bags depending upon the level. At six o’clock am the platelet counts will be sent to the lab to verify a high enough platelet level so I can get the biopsy done without danger of internal bleeding. If all goes as planned, I should be wheeled into the operating room around 8:30 am on the 27th.

The biopsy tomorrow will be done on a lung. I will be constantly hooked up to a CT scan that will guide the surgeon the whole way. He can see direction, depth, angle, biopsy extraction point and all other parameters. We will not receive any biopsy test results for 2-4 days.

If there are no definitive answers or certain results as to what is happening with the lung biopsy, then a biopsy on one of the masses in the brain will be performed the day after.

It hasn’t been fun waiting because the time kept slipping. Now we have a plan that is thoughtful and seems accurately. Being here won't be fun but at least we have a good idea of the process.

There are several prayer needs and several specific times to pray. Barbara is filled with emotion and concern too. We appreciate your support.

Well my dinner is here so I better eat something before I’m cut off till mid morning or later.

We love you guys very much.

November 25, 2007

Well here we go again. Some new developments have come to light. About a week ago I was starting to have problems with reading. I was reading scriptures to Barbara and it became hard to formulate words and thoughts. There was a component of needing reading glasses.

However, there was also a component where my brain wasn’t processing words properly. It was getting worse and more frustrating. I was working on our accounting books and numbers were even more bizarre than words. For example, this update is taking a long time to compose, write and spellcheck. If something is grammatically incorrect, I’ve been trying really hard.

Last Wednesday OHSU gave me an eye exam. The results showed that I am developing premature cataracts. The cataracts are most likely due to chemotherapy and radiation treatments. With proper glasses and bright lighting, cataract surgery will be about 1 year away.

I couldn’t imagine the whole problem was eyesight so we went to the urgency clinic on Saturday to get a medical doctor’s opinion. An MRI was performed and revealed 3 masses in my brain. The masses are placing some pressure that is probably causing my brain to exhibit erratic thought processing.

I was immediately admitted into Kaiser Sunnyside. They have done a lot of additional testing. Beside the 3 masses in my brain there is an additional mass in one of my lungs. Finding the mass in the lung will allow doing a biopsy in the lung and not in my brain. Brain biopsies are certainly more troublesome than lung biopsies.

The most likely cause of the masses is an infection, probable a fungal infection. The theory is that during my last chemotherapy I did have a bout with fungal pneumonia. All of the most potent meds were used to fight off the infection. Nothing seemed to work until my natural immune system started coming back. As soon as my immune system kicked in, my lungs cleared right out. There is some discussion that the infection in the lungs has been hanging around at a low level. The infection could have spread to the brain.

While an infection is the most likely causes of the masses, there are a couple of other possibilities. The masses could be a totally different type of cancer. My body has been through a lot of trauma and more chemicals than you can ever imagine. If it is a new type of cancer, then it will be treated not as CML.

Another possibility for the masses is that leukemia cells can congregate in the brain. The chemotherapy treatment is partially blocked in the brain as a defense mechanism. This would seem unlikely since my treatment is molecular, not chemical.

As you can imagine, Barbara and I are reeling from the news. The next couple of days will greatly clarify things. We, of course, solicit your prayers. Pray for clarity of God’s will and that we listen to only His.

Thanks for your support and allowing us to share life with all of you.

November 15, 2007

God is blessing me ever day. I am slowly getting stronger. My legs are still pretty weak, but improving. Mt balance is slowly getting better. If I’m very diligent and intentional I can walk without a cane or walker on a flat and open floor. However, I’ve fallen a few times when I am not paying extreme attention to walking. Fortunately there have only been minor bumps and bruises.

It is difficult to find the narrow line where I am trying to progress but not overachieve. It is hard to see improvement happening daily. When we think in terms of weeks and not days, then improvement can be seen.

My blood counts are holding well. I haven’t had any blood or platelet transfusions for 3 weeks. That is a definite a great blessing. We are now only going to get labs done once a week. Barbara and I both appreciate fewer trips to OHSU.

I have been tracking mileage for medical appointments to turn in for a tax deduction. From January 1, 2007 until October 31, 2007 (10 months) we have driven 5876 miles to OHSU or Kaiser. That is the same as driving from our house to Miami, Florida and back to Yellowstone Park. What is even grimmer is that 70% or more of the trips were in Portland rush hour traffic.

The level of leukemia has been consistent since finishing the last chemotherapy. I am still in remission without any blast (aggressive) cells detected. The best would be no evidence of leukemia but my test results are the second best. Future treatment plans, if any, will only happen if there is an actual mutation found. We are on a wait and see mode right now.

I need to go with Barbara so I’ll sign off for now. You all have been such a support to Barbara and me. Thank you so much.

November 2, 2007

I hope you all had a pleasant Halloween. We had about 120 kids come to our house by 9:00pm. That’s when we turned out the lights and went upstairs to get ready for the night. There weren’t any pumpkins smashed in the street in the neighborhood and no noticeable vandalism so that was good.

Things are progressing well for me, very slowly but well. Barbara and I have been able to get out of the house more frequently. We even were able to go to church and to some friends’ houses. Those are great times and we feel blessed that we can do them. We both like our house a lot, but not 24-7. I actually was able to go into the garage and start cleaning it up. Everything takes so long because of my limited mobility that it is frustrating, but I appreciate being able to do anything at all.

I still am using a walker for the most part. If I’m only going a few steps I can use my cane. However I am still a little shaky for the cane yet. I have fallen a couple of times so far. Fortunately they were more of a slump to the floor and not a big crash so there were no bumps or bruises.

My legs are still pretty weak. When my knees bend too far (about half way) they buckle from lack of strength. I am able to go up and down the stairs alone now very slowly. Before last week Barbara had to give me a little push on the rear to get me up them.

My hemoglobin and hematocrit blood levels are starting to hold their own so we’re hoping there will be no more red blood transfusions. My platelets are still not maintaining, but are losing ground more slowly. Platelets are typically the last blood product to raise levels so they apparently need more time.

We have been going to the OHSU clinic twice a week because of the frequency of needed transfusions. We are now transitioning to once a week to the clinic. This is a real blessing not to have to go up to OHSU as often. Traffic is always so bad, no matter what time of day we go. When I needed a transfusion it normally takes 5-8 hours of sitting in a chair or lying in a bed that is way too short.

The leukemia is still at a very low level. The test results have not been able to show any specific mutations at all. There is a minute positive BCR-ABL protein detected, but no specific mutated cells. That is good news, but the best news would be to have negative BCR-ABL results. That is what we are hoping for and praying for to happen over time.

Barbara and I are reading the Bible together daily. We read In Psalms, Proverbs and a portion of a New Testament book. It has been very fulfilling to me to read scripture with my Sweetie. It is a great way to connect because we are both wrestling with “what’s next” and “where does God want us to be and what does He want us to do”? Barbara has great insights and our discussions are helpful in coping with living one day at a time.

We both suffer with being able to rest in the Lord. We want to help Him out. Instead of resting, our human side wants to be in control and know what is happening now and what will happen in the future. Please pray that we will rest in Him.

I highly recommend those of you married types to read together. The experience is drawing us closer together spiritually and emotionally.