Monday, January 26, 2009

January 26 - The aftermath

It's done - there ain't any going back now. Here are a couple of pictures of the my last visit to the barber for a long time.

We started off well.

But this is what happens when you bring the kids along and put them in charge.

But, it all turned out well in the end.

Though, this is the last time I give this crew a say when I am at the barber!

January 26 - Hair today, gone tomorrow

They told me to expect my hair to start to go on day 16 or 17 after my first chemo treatment and like clockwork on day 17 it has started to go. I first noticed it in the shower yesterday and then when I checked my pillow discovered it must've started overnight.

Since yesterday I have found myself being very conscious of it. I think twice about scratching an itch on my head, in the shower I am not as aggressive in washing it and in drying my hair I pat it dry. I am sure this is over reacting - it isn't like it will come out in big patches. That said, just a little tug and I can pull out a tuft pretty easily. I have demonstrated this bizzare oddity a few times. I let Kaelyn, our 5 year old, take a tug - for some reason she thought that was really neat and I had to stop her from grabbing more.

I just got off the phone with my barber and at 5:40 this afternoon I am going to have it taken off. Better to get this off in one swoop then shedding worse than our dog, Gracie, over the next week or so - we already have enough dark hair floating around our kitchen floor from her.

BTW - Since it has been asked I will mention it - the primary hair loss is coming from on top. It has been much less pronounced in other parts. We'll see what happens, I'll probably thin out in other areas but hopefully it won't be as dramatic.


Friday, January 23, 2009

January 23 - More good stuff

Lynda and I had a great visit with the oncologist today - this was my first visit with the doctor since my first treatment two weeks ago. Our impression was that the doctor was surprised at how well I am doing!
  • During the exam the doctor checked out the lymph nodes in my neck. During the initial visit she easily found a lump in the left side of my neck - the next day the PET scan found cancer there. Today, the doctor could find no evidence of the lump - it has disappeared.
  • My blood pressure is much closer to normal - for the first time since my first doctor visit mid-December. Prior to December my blood pressure had always been text book.
  • My blood counts have returned to normal levels (white and red cell counts). This will be something that will continue to fluxuate dramatically as a result of each treatment.
  • The fact that the cancer was not found in my bone marrow has caused me to be reclassified as having Stage 3 Lymphoma (she originally had me at Stage 4). Note that the staging for this type of cancer is not the same as other types. Stage 3 essentially means that the Lympoma exists above and below my diaphram.

Until this point I had not pushed for information on the odds of success or the odds of re-occurance in the future. Based on all the factors (including my age and overall health) I am in the low-intermediate category. According to the statistics this puts me in the 80% range that I will be cancer free at the end of the treatment and will remain so past five years. The percentages don't go much higher than that - I'll take it!

We also discussed the process for evaluating progress of the treatments. I expect I will have another CT scan toward the end of February. The main focus area will be the 7 centimeter growth that was found around the kidneys. Any reduction in size of this tumor will be a sign that the treatment is working as planned. Based on how my body has responded so far (neck and overall I feel great this week) the doctor fully expects that the tumor will be smaller. I'll take fully disappeared and call it another miracle! Regardless of the amount of progress, the doctor told me that I will be doing the full eight treatments.

A couple of folks have sent me some information on supplemental herbal treatment options (ex. Triphala which is an India based approach). I talked to the doctor about these and she is insisting that I stay away from those while I am on the chemo treatment plan. She doesn't want to do anything that might cause interference with the existing treatment plan - especially when it appears to be working.

My confidence continues to grow that we are on the right path and that with everyone's continued prayer support and the grace of God that we'll beat this!


Tuesday, January 20, 2009

January 20 - Feelin' Normal

The last couple of days have been great! I woke up Sunday feeling more "normal" than I have felt since late November. No back aches, stomach aches... The normal feeling has continued. My hope is that I will be in the clear until my next treatment on Friday, January 30th.

I noticed this morning as I was getting ready for the day that today I almost didn't have to shave. This may be a sign that hair growth is slowing. Being able to skip out on shaving would be a small benefit to this whole process. Unfortunately, this might be sign that the hair on top is getting ready to go.

I believe the hair loss is primarily due to one of the main drugs in the chemo treatment - Adriamycin - also known as the "red devil". This drug was literally a very deep red - and there was a lot of it. It came thru two giant syringes - the biggest I had ever seen. Think bigger than a turkey baster you'd find in a kitchen. It looked more like something you'd see in a Bugs Bunny cartoon - at my next treatment I will check to see if there is an "ACME" written on the side of it. On giving it to me the nurse said this one "is the interesting one" which alarmed me a bit initially. Turns out the interesting part was that it turned my pea red for the next couple hours - it was good to be warned about that.

That's all for now, my hope is that life will continue to be normal for the next week and a half.


Friday, January 16, 2009

January 16 - Back in the saddle

Before getting into my update - I have noticed some folks are starting to add comments to my posts. This is great. It is quite simple to do this - though not obvious. If you'd like to comment on any of my posts simply click on the small "comment" word below the posting.

Whew - I had a rough 36 hours that started with nausea and resulted in being plugged up from the bottom up (yes, probably too much information). The process of getting everything moving was unpleasant - I will spare you those details. I will say that I thank God that Lynda is a nurse! She has been such a huge guide to me and care giver to me - we are stretching the "in sickness and health" here and she has meant the world to me. Seriously, if I didn't have Lynda to rely on to make sure I am doing the right things to keep my ship upright I'd probably have had to make several trips to the emergency room - and it is only the first week!

Example - Wednesday night Lynda decides we needed to do a little procedure to get me moving again (being discrete here). Needless to say I never had one of those. With a shaky voice I asked - "Do you know how to do that?". With a roll of the eyes, she informed me that she used to have to do this sort of thing all the time while working in the hospital. I didn't know, didn't need to know - but am glad she knew what to do!

We are learning quite a bit about how my body reacts to the treatments and the associated drugs. We are going to be in much better shape going into the next treatment - January 30.

Today, my stomach is a little sore but I am doing much better. After an awesome first weekend we hit a valley which I think we are about out of now.

I am hoping and praying for a good weekend. Tomorrow we celebrate Ryan's eigth birthday and we also have tickets to see Wicked!

Continue your prayers. I was in the doctor today for my weekly checkup. As expected my white blood cells have taken a dive - my immunity levels are pretty low right now. We are hoping that with one of the drugs taken last week that this will bounce back over the weekend. Another concern is that my blood pressure (which has been high since I first checked with the doctor mid-December) is still high. We had hoped that with the free up of the kidney last week that the blood pressure would come down to normal levels (prior to last month my blood pressure has always been text book).

In Christ,

Wednesday, January 14, 2009

January 14 - Great News! The cancer is not in the bone marrow!

A week ago my doctor was fairly certain she'd find the Lymphoma in my bone marrow. We finally got news today that the bone marrow is clean - no cancer. There have been so many people praying for me - this I believe is testimony to the power of prayer!

If I wasn't feeling so nauseated I'd be jumping for joy right now!

To be honest I don't really know all the ramifications of cancer in the bone marrow - I just know that it not being there is the best news I have heard in the last 10 days.

I chalk this up as God's second miracle in me (first being the freed up kidney on day 1 after treatment).

Thank you, thank you to everyone keeping me in their thoughts and prayers - it is working! With your helpl and the power of God WE are going to conquer this.


January 14 - Not as great

The nausea finally set in over the last day. The first five days were great - I guess that the anti-nausea medicine they gave me during the treatment only covered five days. The supplemental stuff they have given me has done little to help.

After two good days working in the office, today I am doing what I can from my reclyner at home.

In other news, I think the kids are starting to understand a little more what I am going thru. Kaelyn (5) learned that I am going to lose my hair soon. She laughed and pointed her finger at me - "That is so silly". If given the option, I think Kaelyn and Emily (10) will want to be given the first opportunity to take the shaver to me. That is still a week or two away.

Here is an oddity from one of my tests last week that I haven't shared. One of the tests was a "Pet" scan. To prep for this test I was injected with lightly radioactive glucose. The cancer cells eat this up and then glow under the scan. The oddity was that on leaving I was warned to keep a 3 ft clearance from the kids the rest of the day and evening. While adults are fine with the level of radioactivity I had kids are susceptible. I was able to do a short hug here or there but generally had to keep my distance until the next morning. It was incredibly odd to spend the evening being so self-conscious about how close I was to Emily, Ryan and Kaelyn.


Sunday, January 11, 2009

January 11 - A great weekend!

It has been a great two days! I attribute this to the work of God and the great progress made in developing this chemo process. I can only hope that I respond to future treatments nearly as well.

The last two nights I have slept better than I have in over a month. I haven't experienced any of the after effects of the chemo treatment that I was concerned about. My energy levels have been excellent - the steriod they gave me has been a big help. I have had a little bone soreness and slight headache - but hardly even worth a Tylenol.

Another blessing this weekend was that our good friends, Pat and Teresa volunteered to have Emily, Ryan and Kaelyn visit their house for the weekend. Our kids think of Pat and Teresa as another aunt and uncle and their two kids Erin and Kimmy as more cousins. It was a win-win for Lynda and I and for the kids. Pat and Teresa are wonderful lifelong friends.

It was a blessing to Lynda and I to have a peaceful, restful weekend - and the extreme bonus no bad symptoms from the treatment. I felt so good that we decided to go out to dinner Saturday night with good friends of ours, Brian and Violet.

Today, I gave my primary doctor a call to give him an update on my progress. Dr. EJ has been an awesome care provider and guide over the past couple of weeks and a great friend. It truly has a been a blessing to have a relationship with my doctor (we go to the same church and our boys go to school together). An interesting item came out of our conversation - he let me know that he had never had a patient go from Lymphoma cancer diagnosis to first treatment as fast as I have.

My last dose of the steriod for this treatment is tomorrow. It is likely that as that dose wears off I will start expriencing far more fatigue. On top of that, while the chemo treatment begins working immediately it hits its maximum working potency after seven or eight days.

I will continue to take each day - one at time. Again, I feel very blessed to have a good start.

I expect that future posts will be less frequent and will begin getting shorter.

Peace, In Christ,

Friday, January 9, 2009

January 9 - The day after

The only thing out of the ordinary I was expecting for the first night was that I'd need to get up every 2 hours to go to the bathroom. The first night was a little more eventful.

I woke up at 1 AM with the sharpest pain I have ever experienced in that area no guy wants to have pain. On a scale of 1-10, this was a 15. The shock of the pain was so great I aggressively vomited. Fortunately, this made the pain miraculously go away completely. Unfortunately, this happened two more times during the night - every two hours.

Lynda talked to the doctor Friday morning and the next thing I knew I was packed and heading into the emergency room. They thought I was dealing with a kidney stone from the treatment. The reason is that the chemo treatment begins working immediately killing cancer cells. The dead cells get flushed thru the kidneys and bladder. One concern is that these cells can crystalize - forming stones. One of the medications I take each day is to keep the crystalization from happening. When I heard kidney stone I just rolled my eyes - that is what we originally thought I had before getting into this cancer journey.

Two or three hours in the emergency room - a blood test and a CT scan and big surprise - no stones. The miracle here - all indications show that my right kidney has started working normally again!!! The first of many expected miracles. My personal belief is that the drugs went to work immediately over night on the Lymphoma that was constraining my right kidney from emptying.

I was incredibly sore all day on Friday in my mid-section and back. I think this was due to my aggressive use of some stomach muscles last night that haven't been used in a long time. The back pain is a left over from Tuesday's bone marrow biopsy.

Interestingly, I have so far had no adverse symptoms yet from the chemo drugs - I'll take that as a mini-miracle! The drugs they gave me to counteract the symptoms and a steriod I am able to take for the first five days after each treatment are doing their jobs.

Before leaving the hospital we had to pay a visit to the Oncology office (where I receive my treatments). I needed to receive an injection that will cause my bone marrow to boost the amount of white blood cells. This is a standard shot that I will receive after each treatment. The chemo drugs are going to do a lot of rough stuff to my blood over the next six months - affecting white and red blood cells and platelets (help stops bleeding). My immunity to colds and other things is going to be dramatically reduced. As such every week - regardless of whether I receive a treatment I will be visiting the doctor to monitor the effects on my blood. The draw-back to this drug is that for the first couple of days while the bones are producing the white cells it creates a bit of a log jam in my bones. I may experience some soreness in many of my bones.

All in all, it was a rough and scary first 24 hours but not at all in the way that I expected.

Tonight, I get to try a sleeping pill to help me sleep. It has been many weeks since I have had a really good night sleep. One thing or another has kept sleep from being pleasant - back pain, stomach pain...

Thursday, January 8, 2009

January 8 - First Chemo Treatment

Yesterday, I found a great deal of stress and anxiety building in me for this first chemo treatment and what it would do to me. Stress and anxiety are not normal for me - I am normally very calm - letting stressful stuff roll off me. Not this time.

I am happy to say that the first chemo treatment (my treatments are at Central Dupage Hospital) went very smoothly - it was a heck of a lot easier than I expected - in truth even with research - I didn't know what to expect.

Basically, I was given an IV and they slowly dripped various chemo drugs in me thru out the date. I basically sat in an reclyner for about 7 hours as the drugs made their way in. I kept expecting that the next drug would cause some sort of unpleasant reaction - but it didn't happen. The nurse was most concerned with the first drug (Rituxan). In many cases Rituxan can cause adverse reactions with the heart while it is dripped in. For this reason this drug goes in very slowly - about 5 hours. Thank God - in my case there was no problems. The interesting thing about Rituxan is that it basically paints targets on the cancer cells that acts like a magnet for the other chemo drugs - amazing. I believe this is a newer drug that has just started being used in the last 5-10 years.

After the Rituxan finally finished making its way in me there were four or five other drugs that were pushed in much quicker. Some that are part of the chemo treatment others that are used to counteract the unpleasant side effects of the treatment.

Once all the drugs were in, they removed the IV and we were free to go. The nurse was confident that I would do well and might not even have much of an adverse reaction in the first couple of days.

While I was a bit tired Thursday evening - I was blessed in that it was uneventful.

What I thought might be a stressful day was oddly fairly relaxing. I can only hope this is a good sign for my future treatments - which will be done once every three weeks. I expect I'll have to do seven more.

Wednesday, January 7, 2009

January 7 - Discovering cancer in my life

I plan to use this site to help keep my friends and family updated on my journey and fight with cancer - non-Hodkins Lymphoma. Included below is the information I shared on Wednesday, January 7th with friends and family and on Facebook.

From January 7th:

While I’ve had the chance to tell my story many times in the last 24 hours – I know many may have not heard my news. In the last couple of days I have been diagnosed with Non-Hodgkin’s Lymphoma (large B Cell – if that means anything to you). The cancer cells are very aggressive growers and I have quite a lot of them in my lower abdomen with smaller pockets thrown in my chest and neck. Today (Thursday, Jan 8), I begin the first of 8 chemotherapy treatments. The treatments will each be separated by three weeks – so this process will go on for about six months. The good news is that this type of cancer cell is very responsive to treatment. I am told that the drugs begin immediately in attacking and killing the cancer cells and continue working for three weeks. Each following treatment is intended to kill more and more cancer cells. The goal is that after the last treatment all cancer cells will be gone - a complete cure. I approach this whole situation with confidence and optimism – this is another problem to focus on and solve. That said this last day before treatment begins as been a bit more stressful and anxiety filled then I am used to.

Many ask me about my current symptoms and pain. For the last five days I have had some back pain – at times requiring some pain killers. Oddly that pain has subsided in the last 24 hours. Other than that I don’t have significant symptoms or pain to describe.

I am expecting that the first couple of days after each treatment will be very unpleasant – I will be very tired and there a good chance I will be nauseous. My hope is that my body will rebound quickly after each treatment and that I will feel up to doing the things I want to do – spending time with friends and family (home and work). I’ll take each day one at a time.

I have already been overwhelmed with the response of care and love from my friends – everyone wants to know how they can help – many want to help right now! My wife, Lynda, and I will put our heads together to think of some practical ways folks can help out. Right now we just don’t know what this is going to be like. Fortunately, we have this first round covered in terms of help. As we get thru this first round I am sure we’ll find ways couple practical of ways others can help out. This is going to be more of a marathon vs. a sprint. For now prayer support is most welcome.

Lynda and I are still in quite a bit of shock over this. Fortunately, we have a wide network of friends and family – including you to turn to for support. On top that we have a very strong faith in Jesus. We know that God will not put anything in our path that He hasn’t given us the strength to handle. We are going to tackle this head on – I expect nothing other a complete recovery.

You are welcome to share my news with others.
Peace and Love,Tom