Tuesday, December 28, 2004

Third Treatment

It's getting better all the time! I finished my third treatment today. (check out the updated photo page). The treatment did take a day and half. But it wasn't because your prayers didn't work. I chickened out.. well sorta... let me explain: I asked the doctor if we could increase the drip-rate so that I could get done in a day. He said that it was my choice, but he wanted me to be aware of the risks involved (namely another allergic reaction like I had with my first treatment). As I looked around the room, the nurses were very busy; Sherry did not sit with me all day today, so I didn't have my personal advocate there to alert the nurses if I started having a reaction. But mostly, I looked around the room at the other people going through chemo treatments that were much harder than my treatments. Many of them have been "dancing with the beast" for 6, 7, or more years. So I don't know if was fear of another reaction, or what. But I figured if my biggest complaint with my treatments was that it was just inconvenient, I should just shut my mouth and count my blessings. So we bumped it up very little (from 18 to 20) and I spent a lot of time praying for the others in the room.

Christmas Eve
We had 3 services on Christmas Eve. I got to play my guitar and harmonica and I lead the congregation in singing "Silent Night". I think I was able to create quiet moment in which they could feel Christ's presence (which, after all, is the goal of everyone performing in church). Several people approached me afterwards and said that it was their favorite part of the service. That was nice to hear. But mostly, it was good to feel used.

The Power of Prayer
It is amazing for me to hear how many people are praying for me. If you are praying for me, thank you!! Every day, somebody tells me that they've been reading my blog. I know that it is reaching church-goers and non-church-goers - that's really cool. A pastor at a friend's church used me as an example of somebody who prays boldly. I honestly never thought I'd be used as a Christian example of anything (except maybe the "before" picture!). But I really do believe in the power of prayer and the phenomenal success that I've been having with my treatments has really driven it home for me. It is amazing to think that all power that it took to create the planet, and everything in it -- all that power is at my disposal. But it takes prayer to make it happen (2 Corinthians 1:9-11) my prayers and yours. So I really do thank you for your prayers from the bottom of my heart.

What's Next?
I've got only one treatment left (next Monday ... and Tuesday). Tomorrow I'm going to work for the first time in almost 3 weeks. It feels good to be able to go back to work. My current client has been extremely flexible and understanding -- yet another blessing for me!

As always, my prayer is for 100% remission and more: to be cured. Lord, please: Remove the cancer completely. (I'm hoping that He reads my blog everyday, too!)

Friday, December 24, 2004

A Very Merry Christmas

Yesterday afternoon, the dermatologist's office called and said that they received the lab results for the cyst removed from my leg last week. It was totally benign. Yea!! Praise God!

People see me and ask "how are you feeling?" I feel great. I feel healthy and I feel so totally blessed. But just because I'm in remission, please don't take me off your prayer list. I still have two treatments to go and my goals now are for a cure or at least 100% remission.

Do you want to help?
I've had several say if there is anything I can do, let me know. I always say thank you and sincerely wish that there was some way that I could let them help. Then it dawned on my last night, there is something that you can do.
There are two ways that my lymphoma will be cured (not just in remission -- actually cured).
1. I could be miraculously cured through the grace of God.
2. Research scientists could find a cure for lymphoma
(ok, you could argue that they will only find a cure with God's grace, but let's not split hairs).
The point is, (ok, I'm getting way out of my comfort zone, here) there are scientists working everyday to find a cure for lymphoma. Research requires funding. If you want to help, you can make a donation to help fund those scientists. Maybe they will find a cure for my lymphoma. The Lymphoma Research Foundation has been a great source of information for me -- and their website was recommended by my doctor. I think that they are a reputable organization. This link will take you to their donation page. Please do not send me money! That's not what this is about at all. Some of you have asked how you can help. This is a way that you can help. Prayers are another way that you can help (and they don't cost anything).

A Very Merry Christmas
The day after I was diagnosed, I had band practice at church. I told the band and the praise singers about my diagnosis. I said that one of my first goals was to be able to play for our Christmas Eve services. Every year, we have 3 services at 5 pm, 7 pm, and 9 pm. I really love playing on Christmas Eve. Well, I am going to meet my goal. And like everything else, my cup runeth over. When we do Silent Night (which is always cool at Southridge), I will be leading the congregation in singing (something I don't get to do often) while playing guitar. I will even get to play guitar and harmonica (yes, at the same time) which is a whole lot of fun for me.
Christmas Eve at Southridge is always a wonderful time of worship. Even if you "don't do the God thing" as one friend put it, it is a free evening of great Christmas entertainment for the whole family. So come to Southridge tonight and have a very Merry Christmas.
Now there were in the same country shepherds living out in the fields, keeping watch over their flock by night. And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, "Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people. For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger." And suddenly there was with the angel a multitude of the heavenly host praising God and saying:
"Glory to God in the highest,
And on earth peace, goodwill toward men! (Luke 2:8-14)
God Bless us, Everyone!

Wednesday, December 22, 2004

Second Treatment (Day 2)

I was right: it only took 1/2 a day to finish up the dose. Sherry dropped me off at the doctors and ran errands while I finished up the dose. I was out by noon. Again, I can see very visible improvements. I have updated my Lymphoma photo page so that you can see the progress. The morning went by quickly and I chatted with some of the other patients who were getting chemotherapy. Some of these people have been doing this for years and years. I almost feel guilty about having such a quick recovery. I found myself praying for them while I'm getting my treatment.

Tonight another lady from my church brought a meal to my house. It was delicious. My church family has been an incredible source of support and prayers. I am so blessed by this community of believers.

I have only two more treatments to go. My next treatment will be on Monday. Please continue to pray for this disease to just go away. Only God can make that happen. So prayers are critical.



Second Treatment

Sherry and I went to Dr. Letzer's office again. He is extremely happy with the progress that the Rituxan is having. His P.A. was excited and amazed. It was real encouraging to see her reaction. Dr. Letzer said that he wanted to be safe, so he would not let me take the Rituxan any faster than 18 mg/hour today. That's a real slow rate, but it would ensure that I would not have another allergic reaction like I did last time. So I was not able to finish the treatment in a single day. I will have to go back to his office to get the rest of the dose. I have to admit, I was really disappointed. But like Sherry said, "It's a lot better than having your airway constricted!" I had to agree. I was able to get more than 1/2 the dose done, so I don't think that it will take another full day to finish the dose, so that's good.

My sleep schedule is all out of whack. I slept during the day yesterday after getting the portacath installed. I take Benadryl and Tylenol (to avoid the allergic reaction) while getting the Rituxan. I ended up sleeping all day today, too. That's why I'm updating my blog at 3 in the morning.

The Portacath worked great!
Today was the first day that I got to use the portacath. It is still a poke in the skin so it's not totally painless, but it's not as bad as getting the IV in the arm. The best thing is that it was really nice to be able to move my arms freely (something I couldn't do when the IV is in the arm). I'm really glad I decided to get the portacath. I asked Suzanne (one of the nurses) to start my drip in my portacath. She's a dyed-in-the-wool Democrat like me and I told her that I thought it was appropriate for her to make me a real bleeding heart! (Somewhere in Texas, there is a village that is missing it's idiot!)

More test results in
Dr. Letzer said that the second opinion came back from the University of Michigan Medical Center and they confirmed everything that the Borgess labs and Mayo clinic said (yes, it's Lymphoma). Dr. Letzer also got the test results back from the PET scan and it showed the cancer in places that the CAT scan did not show. He said that it showed the cancer on my head, a small spot in my stomach, and also some on on my liver. So I guess it truely is (was) widespread. So I am glad that I got started on the treatments when I did. Dr. Letzer says that he is confident that the Rituxan is melting away the cancer everywhere in my body. (We are still waiting for biopsy results for the cyst that I had removed from my leg).

What is remission?
Since the doctor feels that this is currently incurable, the goal is remission. He said that the "official" benchmark for remission is "reduction in the size of the tumor of more than 50%." He estimated that my tumor has been reduced by approximately 80%, so based on that benchmark, I'm already in remission!! Wow! So now his goal is "total remission" which means that no evidence of the cancer is visible at all! Good goal, don't you think?! I asked if that means he would take another bone marrow test. He said that he didn't want to put me through that again, but that it was an option.

Good News
The best news of the day was that Dr. Letzer said that instead of eight doses of Rituxan, he thinks that I will only need four! That means that after Wednesday, I will be half-done with my treatments! Woo hoo! Then I will need to take four maintenance doses every six months. I'm hoping that I will be able to go at a higher drip rate for those.

Thank you for your continued prayers. Pray for total remission and then some. Like I've said before, "I have a great doctor, but he's not God". I have every confidence that Dr. Letzer and Rituxan can get me into total remission in the next 2 weeks. But I know that only God can wipe the cancer from my body forever. That is my prayer, because then everyone will know that God cured my cancer and God gets all the glory.
And if that is not His will, then I pray that God will give me peace with my condition and grant me a long-lasting remission.



Monday, December 20, 2004

Port Installed, keeping upbeat

Well, thanks to your prayers, my portacath installation went without a hitch!
Sherry and I went in to the Outpatient Surgery part of Borgess Hospital very early on this cold, cold morning. The nurses were great and Sherry was by my side for most of my concious moments. I remember getting on the operating table and have a vague recollection of somebody pressing on my chest but other than that, I don't remember the operation at all. We came home before 11 and I slept most of the afternoon.

They put the port in just over my right nipple. It's a little swollen, so it's hard to tell how visible it will be. I suspect that I've probably gone up a cup-size. There is only a dull pain, but it's not bad.

Several people have asked "how can you be diagnosed with "currently incurable" cancer and still be up-beat?" I guess it is a concious choice to choose my perspective and my attitude. Sure, I could focus on not having had any income for 2-3 weeks. I could be upset by how much hardship I have brought on my wife and family. I could worry about medical bills. I could get angry at God and ask "Why me?". But what's the point? My faith tells me not to worry. I know that I am supported by the prayers of so many friends and loved ones. I have the undying love and support of my best friend and wife, Sherry. And I know that, with every breath I take, I am in God's hands. That faith allows me to change my perspective so that I can focus on the good things happening. I can actually see the progress of the Rituxan. (I get downright giddy about that! ) There have been so many "silver linings" to this situation: I have a friend who went to church for the first time in 39 years. I have re-established contact with friends that I have not talked to in years. I honestly don't know how anybody could survive this without faith.

Tomorrow, we start my second treatment; it will be the first time that they use the portacath. Please pray that the portacath works well and that I can get through the infusion in less than a day. And as always, my most fervent prayer is that the cancer does not just go into remission, I pray that God will wipe away the cancer forever. I appreciate your prayers so much! Thank you.

Saturday, December 18, 2004

Prayers, Cysts, & Photos

Prayer Shawl
One of the wonderful ladies from my church came by with a gift. Apparently about 20 women had started a knitting ministry. I was the first recipient. They knitted this absolutely beautiful blue shawl and said that it with each stitch, they said a prayer. I was humbled and overwhelmed. When I get my Rituxan treatments, the medicine lowers my blood pressure which makes me cold. So I will wear this shawl when I get my next treatment. Thank you ladies.

The first time I saw my oncologist, I casually mentioned that I also had a bump on the top of my thigh. When he saw it, his eyes bugged out.
"How long have you had that?!", he asked.
"A few years", I shrugged, "My regular doctor always indicated that it was probably benign and that he could take it off whenever I wanted. It just never bothered me, so I never had him take it off. " The oncologist stared at me in disbelief. It was as if he was wondering how somebody this dumb was capable of carrying on a conversation.
"Well, that's coming out!", he said. And he had his staff set up an appointment with a dermatologist.
On Thursday, it came out. It reminded me of an iceberg. It didn't look so big on the surface... I have to admit, if I had known that it was as big as it was under the skin, I would have had my regular doctor take it out long ago. It was about 3/4 the size of golf ball. The dermatologist said that he'd send it out for biopsy. I've got 11 stiches and it has slowed my walking down considerably. Sherry has changed the dressing three times already. I can't begin to tell you how blessed I am to have Sherry watching out for me and taking care of me. I love you, sweetheart!

I had taken some photographs of the lump on my head where the lymphoma first showed up. Then after my first treatment with Rituxan, I couldn't believe how much it had started working, so I took some more photos. I realize that I don't get to physically see many of you. So I thought that I would put the photos on my new "My Lymphoma" photo page. My plan is to take pictures after each treatment and (eventually) add them to that page.

Thank you!
I wasn't sure how many people were checking out my blog, so I added a counter. I've received over 150 hits just in the last 24 hours! Wow! I really do appreciate your prayers and concerns -- especially prayers.

What's next?
On Monday, we go in for outpatient surgery to get a Portacath installed. (For more portacath details, check here). Then on Tuesday, we go in for my next treatment. Pray for the Portacath to be installed without a hitch and please pray that, on Tuesday, we can get the whole dose of Rituxan done in a single day (9 hours).

Wednesday, December 15, 2004

First Treatment (Day 2)

Because of a misconfiguration at Blogger, I was unable to post yesterday's blog entry until tonight.

This morning, after a restless night, I woke up with some of the symptoms that I had with yesterday's allergic reaction, although they were much less severe (itchy face & scalp, face flushed, and rash on my chest). So we waited until Dr. Letzer could see me before we started treatment with Rituxan again. I was very concerned that he was going to say "no" to the Rituxan. Any other treatment would have to be chemotherapy (Rituxan is a "bioligical" therapy and the only one of it's kind for my type of lymphoma). Chemotherapy would significantly decrease my quality of life over biological therapy. Fortunately, he said that they were just symptoms of the steroids that they gave me when I had the reaction yesterday.

But Dr. Letzer was very encouraged by obvious decrease in size of the bump on my head. So I started on Rituxan this morning at the lowest dose all morning. We kept it there until the afternoon. Then we kicked it up to from 12mg/hour to 18 mg/hour and that was just enough to finish the dose by 6:30pm . I never had any more allergy symptoms; overall, it was a very uneventful day -- which is a good thing.

I looked at my head when I got home and the bump is smaller still! Woo Hoo!! Praise the Lord. It's ironic that I hated the bump on my head so much and now I am thankful because I am one of the few cancer patients that can actually see the results of the medicine working.

I know that the reason I am experiencing this quick healing is because there are so many people praying for me. Thank you so much! Praise the Lord!

Tuesday, December 14, 2004

First Treatment

(I had trouble with the blogger program and was not able to post this until a day later)
Well this was an exciting day -- not fun-- just exciting. I went to the doctor's office for my first treatment for lymphoma. I was accompanied by my ever-faithful wife, Sherry, who has been by my side throughout this whole adventure. I don't know how I'd ever make it without her. She's been my comforter, my advocate, my nurse, and my cheering section. No doubt about it: I married "up".

Any Port in a Storm...
A "Porta-cath" (also known as a "port") is a catheter that is surgically implanted under the skin. The nurses can easily get blood-draws and administer the Rituxan using this and it is commonly used with patients getting chemo. I had been questioning whether or not I should get one for just 8 doses. That question was quickly answered this morning. The first thing that happened was that I got a pricked 5 times (1 blood draw, 1 IV inserted and the 3 failed attempts to start an IV which immediately preceded it.). It is safe to say that I'll get the porta-cath as soon as I can.

The Big Reaction
They had told us 80% of the side affects with Rituxan are experience with the first transfusion and that most people experience some side affects. The most significant side affects are allergic reactions to the drug. So they gave me some Benedryl and Tylenol before they started the treatment. The treatment is a intravenious (IV) drip that can take between 4 to 8 hours depending on the flow rate. (the The start out slow (12mg/hour). Then, every 1/2 hour they increase it by 12 mg/hour. The full dose is 500 mg.

So I started out slow. They told me to be aware of any changes. I got up to 24 mg and towards the end of the cycle, my ears started to itch. Sherry said that she noticed my lips had turned red. We then cautiously kicked up the flow rate to 36 mg/hour. Within minutes the itching became very serious itching around my face, then my scalp. We called the nurse over and she shut off the Rituxan drip. This didn't stop the allergic reaction. My face started becoming flushed and it felt like somebody had blown up a balloon in my sinuses. Suddenly, I could not breath through my nose at all! Sherry noticed that I had a rash over my chest. I began to feel nauseous and it felt like somebody was giving me kidney punches in my back. My neck and face was swollen. The nurses gave me more Benedryl and other medicines to counteract the nausea.

I knew I had to relax. I took deep breaths and just kept whispering "Lord heal me, Lord heal me". Eventually, I stopped swelling; and after about 2 hours with just a saline drip, I could breath through my nose. That reaction seemed like it had come on so fast. It was so scary!

When I was ready, they restarted my drip again at 12 mg/hour. I was doing great. Because my first reations showed when I was at 24 mg/hour, they decided to leave it at 12 mg/hour for a while. I was doing great. After a while Sherry looked closer and noticed that the Rituxan was not dripping. In the excitement, the nurses had shut off the Rituxan on the machine that regulates the flow, and they had also pinched the hose with a clip. When they restarted it, they turned on the machine, but forgot to release the clip. So I had spent almost 2 hours with no medicine. I was behind schedule because they had to stop the drip for 2 hours when I had the reaction, but now I was really behind. I had only received about 36-48mg out of 500. So I will have to go back tomorrow and try to get as much of the rest of the dose as I can. (oh joy!). Depending on how much Rituxan I can take, then I may have to come two days a week for my infusions. My mother pointed out that if I had started my treatment according to my calendar (on Friday), I would not have been able to get the 2nd half of the treatment because a dose of Rituxan once mixed lasts only 48 hours. So once again God's calendar proves to be wiser and prevails over my calendar.

Good News
In the middle of all the excitement with my "Big Reaction", one of the billing nurses stopped by to say that they had heard from the insurance company. They said that they determined that my cancer is not a pre-existing condition. Consequently, all my expenses (sans deductible) will be covered by insurance!! I know that many people were specifically praying for this. Thank you.

More Good News
When I came home tonight. I think that the bump on my head (where this all started) appears to be smaller! Praise God! I took some pictures a while ago. I was thinking about posting them (but they are not attractive). I think I will now so that we can see the progress of it going away.

Well, I'm whipped. Gotta another big day (and hopefully a shorter post) tomorrow. Pray for strength. (Isaiah 41:9-10)

Monday, December 13, 2004

Unwilling to wait

I've called the insurance company. They said that any claims submitted for my cancer will be pended (not approved, but not denied) until they have completed their review. Unfortunately, they also said that their review process will take 14 days. A friend of mine once told me "Patience is a virtue; Unfortunately, it's not a virtue I possess!" I like that. I understand that! I'm just not willing to wait 14 days for some insurance doctor to look at my chart and decide that (duh!) it's not a pre-existing condition. I called the doctor's office and I am starting my treatments tomorrow (Tuesday). Pend away, ye insurance beaurocrats! In the meantime, I'll be getting well!

Fantastic Support
I have had so many people tell me that they are praying for me. I can't tell you what a wonderful feeling that is. There have been times when I've just known (don't ask me how), that certain people were praying for me. What an awesome and humbling feeling. I just read about a study done in a coronary unit of a California hospital in 1988.

"Researchers found that patients who had been prayed for by others tended to recover with fewer complications than those who received standard treatment without prayer. Their need for antibiotics was one fifth that of other recovering patients, and they were one third as likely to develop pulmonary swelling"

So thank you so much for all your prayers.

I also found a great source of support on a message board at the Lymphoma Resource Foundation web site. Based on advice from a lymphoma patient there, I've decided to stop calling my lymphoma "incurable". I now call it "currently incurable". There are advances every week in cancer research. And like I've said before, "I have a great doctor, but he's not God!"

Pass the Veggie Burger please
I have been doing a lot of research and have found numerous articles, studies, etc. which indicate that cancer is not the disease. It is a symptom. The disease is poor nutrition. By that I mean a high-fat, meat-eating diet with very few high fibre fruits and veggies. I'll post some links here later, but I've decided to cut out eating beef for now. I'm finally going to kick my Diet Coke addiction (5 days so far) and I've been drinking much more water. A major goal is to eat more food like God provides it (less processed foods). Who knows? This may be harder to take than the Rituxan! ;-)

Please pray for my first treatment (tomorrow!) to go well. I'm told that 80% of side affects with Rituxan occur during the first treatment.

Thank you so much for your continued prayers.

Friday, December 10, 2004

Pre-existing condition?

Well, here's another challenge. I switched insurance companies back in July and my insurance company wants to make sure that I didn't have a pre-existing condition before they will authorize payment for the Rituxan. So I wasn't able to start my treatments today. I don't blame the insurance company: Rituxan is not cheap medicine. I was told that it costs about $4000 per dose. And I will need between 4 and 8 doses. That's a lot of money. One person on the web said that, if measured by volume, Rituxan costs more than diamonds. That sure puts it in perspective.

The frustrating thing is that I know for sure that it was not preexisting. Heck, I just got the diagnosis on 9 days ago. But I've been going around to the doctors and pharmacies that I've been to in the last two years and getting copies of my records. I took them over to the oncologist and they add them to their own records and will fax them (about 40 pages worth!) to the insurance company. So hopefully, I will get authorization yet today and can start treatment on Monday.

I've received several positive comments on my blog. Thanks. Thank you to all of you who have been praying. I'm not giving up hope for a miraculous cure. God always has a plan; sometimes it coincides with doctors' predictions, but it is not a requirement. Please continue to pray for that cure! (and fast insurance review).

Thursday, December 09, 2004

Test Results and Treatment Plan

I received a call at work from Dr. Letzer's office today at work. Instead of seeing me Friday at 2:00, the doctor wanted to see me today. "Oh no" I thought. It doesn't take a political scientist to figure out that when they move up the appointment to discuss test results, it's not because it is good news. On the way home from work, I was sure that the news was going to be horrible.

As it turns out, the news was bittersweet. They found cancer in my bone marrow. The doctor said that he did two bone marrow extracts (one on either side of my spine). One side showed no cancer at all. But the other side had a small amount of cancer. That's all it took. If any shows up in the bone marrow, then it is considered stage 4 (meaning widespread). But more importantly, it means that it is not curable. That is a very sobering thought. One that I haven't fully processed yet.

The good news is that the prognosis for getting it into remission is very good. The other good news is that I won't need chemotherapy. I will use a biotherapy drug called Rituxan. The advantage to Rituxan is that the side affects are minimal. I won't lose my hair (unless I pull it out), and it won't affect my immune system like chemotherapy does. I will get a treatment one day a week for 4 to 8 weeks. By then the cancer should be in remission. Then I will need to get another dose of Rituxan and a CAT scan once every 6 months.... until it comes back and then we start over with another drug and just keep trying to keep it in remission. I will also get this cathetor installed under the skin. They use that whenever they neeed to do blood draws and when they give me my dose of Rituxan (or whatever). I will have this in me for the rest of my life.
If I get the ok from my insurance company quickly, I can start the treatments tomorrow. Otherwise, I will have my first treatment on Monday. Pray that my first infusion of Rituxan goes well. If there are side affects, they will happen on the first infusion.

I'm sad knowing that my life will be forever connected to my oncologist's office (not that they are bad folks-- they are not). I'm sad knowing that my life will not be as long as it would have been otherwise. I don't know how long I will live. But probably not as long as if we could have cured the cancer. But I know that there is a lot of good news received today. As we left the doctor's office, we saw the most beautiful double rainbow. I was reminded that God is with me every day. Some days faith is as easy as leaning back and feeling the warm sun on your face. Some days it is like hanging on to a flag in the middle of a hurricane. If you ask me how I'm doing today, I'm hanging on with everything I got.

Wednesday, December 08, 2004

Testing completed

Ok, all the tests are done. I completed the PET scan yesterday and a CAT scan today. Both tests were similar. They slid me into a big mechanical donut and told me to lay still. For the PET scan, they injected a radioactive dye into me just before the scan. For the CAT scan, they injected something called "contrast" that has a similar function. For the CAT scan, I also had to drink some contrast an hour or so before the test. It tasted like puree'd alluminium foil. (yech!).

I've been told that there are people praying for me in Michigan, New Hampshire, Florida, California, Alaska, Maine, and Montana. Wow! I don't know how to explain the feeling other than that I have a great feeling of peace. If you have been praying for me thank you!

Tomorrow I'm actually going to go into work. Friday afternoon I get the test results and go over them with Dr. Letzer. Pray for stage 1 (no spreading).

I watched the movie "The Passion of the Christ" (the Mel Gibson movie) again last night to remind myself that whatever God has planned for me (chemo, radiation, whatever), it is nothing compared to what Jesus has already gone through for me. I am up for the challenge. To God be the glory!

Monday, December 06, 2004

Bone Marrow biopsy

I found a great website with information on Lymphoma: the Lymphoma Resource Foundation.

Today I went in for a bone marrow biopsy. I had a choice of getting it done in the office or if I was a real wimp, they could do it in the hospital and knock me out. Naturally, I went for the wimp option. It's a little scary that there are drugs out there that can knock you out so fast. But I was really glad they used it today! I was pretty sore when I left.

I'm really happy with Dr. Letzer. And his staff is great! They have rearranged the rest of my tests so that they would get done sooner. Tomorrow, I go in for a PET scan. Wednesday, I get a CAT scan. Then, I go over all the test results with the oncologist on Friday. Then, we should know what stage the cancer is in. That will dictate my treatment options.

Sunday, December 05, 2004

Lotsa love and prayers

Today in church, they announced to the congregation that I was diagnosed with cancer. Pastor Mark had everybody circle around me and pray for me. (For me and Sherry at the 11:00 service). It was very a very powerful moment. I don't think I've ever been hugged so much in my whole life! At the 11:00 service, Becky prayed for not just remission but for a cure. That would be an awesome testimony to God and the power of prayer, wouldn't it!?

Tomorrow, I have a bone marrow test. Then on Tuesday, I have a CAT scan. The goal is to see if the cancer has spread from my head to other parts of my body. Please pray that it hasn't spread.

Saturday, December 04, 2004

Telling friends and family

The next big step for me was telling my family and friends. First, I told my parents. I had just visited my mom in Fort Myers, FL and told her that I was waiting for test results from Mayo. Then I called my Dad. He was shocked. Then I called or emailed my siblings. Everybody is shocked; some cried.

Right after meeting the oncologist, I went to band practice (I play harmonica and guitar in the band at church). I told people in the band and the praise singers. They all laid hands on me and prayed for me. It really meant a lot to me. I strongly believe in the power of prayer. It means a lot to me to know that people are praying for me.

Then I had to tell my kids (I have a son, age 13 and a daughter age 10. I also have a 24 year old step-daughter with Down's who lives with us). I was very nervous. I read a couple of good articles on the subject on the Mayo Clinic's web site. I called an "emergency family meeting" and brought them to my house. I was open and honest and told them I have cancer. I told them my cancer is called Lymphoma and that I'd be sick and have to go to the doctor a lot. They took it much better than I thought. I'm not sure they fully comprehend the impact that this will have on our lives. I'm sure it will become more apparent to them as time goes on.

As of this writing, I've told this story several times to my family and some close friends. I know that I want to inform more of my friends -- some of whom live out of town. And to facilitate that, I thought I'd set up this blog on my web site.

Several people have asked if I mind if they pass my name on to their church or other prayer groups. Please do! Prayer, to me, is the first step to healing. Please pray for healing.

How it all began

I have known for a few months now that God had something "big" planned for me. This has happened before. He doesn't tell me what the "big new thing" is that is coming, but He lets me know that I need to prepare myself for a big change in my life. Once it was a great new job. Once it was that I was going to become self-employed. This time, I was totally shocked. I have cancer. Here's how this new chapter of my life unfolded:

I have had a rash on my head for a while. It started out small. When it didn't go away for several weeks, I went to my regular doctor. We both figured it was just some kinda fungus. He gave me some medicine to put on it every night. I was not consistently applying it and figured that was why it still didn’t go away. But it has never hurt or itched or anything like that; and I really didn't want to spend more on doctors for something that was a minor inconvenience. You couldn't really see it since it was in my hair. So I didn’t do anything about it.

Then, about 2 months ago, it started bumping up and changing shape almost daily. That’s when I asked a friend of mine to recommend a good dermatologist. He is an Ear, Nose, & Throat doctor -- and a praise singer at my church (Southridge Church) . I called the dermatologist he recommended and was told the earliest that I could be seen was December 6th (which was over a month away). I told my friend that I had set up an appointment. He was quite concerned. He said, “Come into my office, I have a physician’s assistant who knows a bit about ‘derm’; he can take a look at it. The least we could do is get some biopsies and send it in to the pathology lab to find out what it is/isn’t. If nothing else, it will give the dermatologist a head start” (no pun intended)

Doctor, Doctor, Gimme the News
So I did. They took two punch biopsies and sent it in to the lab. The lab said that it was difficult to diagnose and that they wanted a bigger sample. So I went back in to my friend the doctor and he took a bigger sample (I had to get 4 stitches to close it up). The lab ran more tests and said essentially that before they were willing to make a diagnosis, they wanted to get a second opinion from the Mayo Clinic. So they sent a bunch of slides and a little chunk of my head off to Mayo. Mayo did some DNA level testing. A couple of doctors there looked at it and said "the findings were consistant with a diagnosis of malignant lymphoma with a B cell phenotype".

On December 1, 2004. The results from Mayo were faxed to my doctor friend who gave me the bad news. He also got me an appointment the next day with "the one of the best oncologists in the area" Dr. Jeffrey Letzer. I was in shock. I went home and told my wife, Sherry and we held each other and cried.

Meet The Oncologist
The next day, Sherry and I met with Dr. Letzer (nice guy). He said that we know what type of Lymphoma it is (there are about 30 different varieties). So the next crucial step is to determine the scope of the growth of this stuff. Is it just on my head? Or did it start somewhere else and spread to my head? If it is just on my head, that's good. That means that it is in Stage 1. If it is in stage 1, then the treatment will be just radiation and there will be a 50% chance that it will CURE the cancer. If the lymphoma has spread or if the radiation does not work, then my cancer is not curable. In that case, the goal of treatment will be to get the cancer into remission and keep it there as long as possible. In that case, the treatment will likely be a combination of chemotherapy (can you say barf-o-rama?), radiation, and biotherapy (whatever that is).

In order to determine if there has been any growth, I will need to go through a bunch of tests. So next week I have a bone marrow test scheduled for Monday, and a full-body CAT scan scheduled on Tuesday. Then, later in the week or the following week, have to get a PET scan. I’m told that that kinda like a CAT scan only it’s a different animal :-) and that sometimes it can show things that the CAT scan does not.