Hard times

I thought that by now (Nov. 14) I would be feeling normal again, but I am not. I have insomnia, diarrhea, depression, and lack of appetite. I am losing weight fast and feel myself getting weaker. So, I am not feeling good. At the time of my last blog entry I was feeling a bit better, but things started to regress shortly after I posted it.

Back to normal life! Here we go!

Today was the last day of steroids, I have been sleeping, feeling normal, and tired. The five weeks or so of 0-4 hrs. of sleep is finally being cured by some well deserved shut eye. Katie seems a lot less stressed too. Radiation is over too!

There is nothing medical on the horizion except a doctor's appointment in Grand Rapids, and taking care of my PICC line. The PICC line is a small tube that goes into my arm and ends inside mybody near my heart. It is a little maintenance, but not too bad. The biggest bummer is that I can't go swimming... well, to be technical I can't submerge it under water.

So, my days have looked like this: Laying down or sitting, cooking food, eating food, sipping water, doing homework, doing some small chores, and finally doing homework. I am taking a full load of classes and so far I'm doing well in them. Amazing and satisfying... and yes, stressful at times.

Smooth sailin' ahead, Capt...

Thursday adventure to D-Town

It has been a smooth and successful day so far. new sleep meds, clear MRI, maybe no spinal tap tomorrow. I did the MRI because the docs here thought that the psychosis might be a sign the cancer had returned. I'll find out for sure on Friday. Maybe I'll go home!

Despite the cancer possibility it was actually an enjoyable day. I thought we had some great conversations. Sylvia Edwards and Phil Erlewine left BR at 5am and they spent the day down there helping me with lugging my stuff around. They were great company. Thanks for the ride and giving me a day of your busy lives! I am honored and feel very loved by their gestures of kindness. I really enjoyed our conversations.

Sleep has been much better with some mild psychosis medication. 5 hrs so far tonight. It feels good. I feel myself acting more normal. Progress!

Philisophical note

I do not believe that life is fair. I do believe in justice, however. Fairness and justice are not guaranteed to anyone in life and are ideals to be sought after in life.

I believe that all humans face hardships and joys in life. I am glad to have been born and want to live each day as though it is my last regardless of adversity. I am not defined by the adiversity in my life. Our response to adversity reveals who we all can be.

Secondary factors

I'm am so happy that the MRI shows no sign of cancer. It has been a difficult two weeks though. There are secondary factors that have caused crisis. As Brian's wife, I've seen Brian suffer more than I've seen him yet. This is a sensitive subject to write about, especially because it's confusing and difficult to understand. I’m talking about steroid psychosis, delirium, being altered, mental breakdowns--losing touch with reality. If you’ve talked to him on the phone lately or if you’ve been around him in person, you may have noticed quick speaking, a stronger tone of voice, or odd comments. I know he is embarrassed about what has been going on lately. He has been such a trooper. We don't know what is causing the delirium. Radiation/chemo, steroids (to help with the previous episode of hydrocephalus/swelling from radiation), sleeping pills (that haven't worked), and little sleep are possible factors.

We are in the hospital waiting to hear the next step. We have been in the process of developing a plan to “detoxify” the steroids, sleeping medicine, and lots of other meds from his body. He may have to take additional med to help with the delirium. After he is able to sleep 7+ hours a night, and after the steroids loosen their affect on Brian (the tapering process is approx a month long) we will hopefully see Brian’s normal amazing self. After this is over, returning home and living a healthy lifestyle to continue to reach healing of cancer sounds good. That's my hope.

Thank you everyone for being there for us right now.

Love,
Katie

Readers digest version of the past relapse.

So the cancer relapsed right before the wedding just a few short months after completing the bone-morrow transplant (bmt). I started the blog then. That was really sad for us because the bmt was really hard on the body and we had put a lot of hope it as a cure - too much hope. So we tried what worked in the past when it came back in May. Things were on track for another remission last month(still the same relapse). That would be when we would have completed the chemotherapy.

The week before the final trip for chemo I had a lot of head and back pain. My ears were ringing more that they normally do so I was convinced that something was really wrong. I asked for an MRI to check-out my head in case it was nothing. Well it was something.

The MRI revealed that there was a lot of swelling in my ventricles - tunnels and spaces in the brain where the brain fluid flows. The idea is that there are so many dead and alive cancer cells in my brain that my brain is clogged like a dirty sponge. The other concern is the area of the brain called the - get this: aqueduct! I love it! According to the mri there was spot of cells that may have been blocking the flow a little bit too.

Screenings are so important! Do more than you need for peace of mind.

This began a whole new phase of battling this cancer. The fact the cancer returned while being treated with chemotherapy likely means more chemo won't work. So, the next step:

RADIATION - rtx

I had 19 doses of radiation starting on the day of the MRI. We just completed radiation a week ago! Health is returning. My MRI last week showed NO EVIDENCE OF CANCER!

Relief!

Yes!

Celebrate!

Here are the interview questions and answers!

I was honored to hear that Katie and I be featured in Hope magazine at the Karmanos hospital in Detroit. This is the email that I sent to the editor:

Here is the best I can do right now (I'll let you take care of the grammar and punctuation) : : )

Are you currently living in Big Rapids?
Yes. In a small two bedroom rental overlooking where the wedding was.Beautiful location as you can see from the pictures.

Current age? 23

What year of college are you in at Ferris State (freshman, sophomore, junior, senior) and what is your major? Senior status - Secondary Education History Major Spanish Minor

What are your plans upon graduating college?

Having as much fun as possible and spending time with friends and family. I love to travel, race sailboats on with my crew (I am on a crew) in Traverse City, cook healthy tasty foods, eat them, campaign for Barack Obama, camp, hike, fish, be in nature. My goal is to walk to class or ride bike every day this year with really warm waterproof windproof clothes. Future plans: Teach History, motivational speaking, and writing books. I take everything one day, moment at a time.

When you first learned you have cancer in Jan. 2006, how was it discovered – through a routine checkup? Where was it diagnosed? How old were you at that time?

I was 21. I was in Florida and jumped off a sailboat onto a dock and the plank I stepped on broke, hit me in the face, broke my glasses, left a bruise and nearly knocked me unconscious. Somehow I caught myself witout falling into the canal water. Later that night and week I had slurred speech, then I was acting really obnoxious and manic. My professors thought I was coming to class on drugs. They later told me they were really disappointed and concerned. 5 days after the dock incident I finally went to the doctor who thought I just hadnt had enough rest. I had to insist on a cat scan because he told me to go home. I did go home but a couple hours later my mother's coworker insisted I call again and try for the scan and it worked. That is how it all began. Were you initially diagnosed with CNS Lymphoma? At what stage was your cancer when it was first diagnosed? CNSL was the diagnosis after a needle biopsy - brain surgery. It was excruciatingly painful. I had thought that I was really dying. I have Primary CNSL and it is very statistically rare for it to metasisise elswhere because of the blood brain barrier. I has recurred 4 times in different parts of the brain. One recurrace was 10 days before the wedding and I had a week of chemo before the wedding. I picked up the stomach flu during that week and 4 days before the wedding almost called the whole thing off. I'm glad I didn't.
Why did you choose to seek treatment at Karmanos? You could have chosen many places, why Karmanos? I was referred by the Luk lymp soc. I heard throgh a friend of Mike Duggans wife Karman is the place and other people said it was one one the only hospitals in MI soley dedicated to cancer research and treatment. I was sold after that.

Has Dr. Ratanatharathorn been your treating physician the entire time you've been treated at Karmanos? Can you share your thoughts and feelings about his care?

Dr. Schiffer is my primary oncol. he is great. Other doctors to mention that have been wonderful is my brain surgeon Dr. Sundeep Mittal, Dr. Jordan Mayer of Radiation oncol., and Dr. Jeffery Zonder oncol. Please include a lot of positive gratification toward these people in the article. I have several nurses names, too if you want them. I would really like to have them in the article. That is my #1 request that you thank these people for me, because they have saved my life many times. I don't care about my attention anywhere as much - This is huge!!!!!!!! To me. Please do as much thanking as your job allows for this article.

Can you please give me a brief overview of your course of treatment from the time you were diagnosed until you received chemotherapy in Dec. 2007?

The first 3 relapses we were very successuful with High Dose Methotrexate (MTX), then we tried for our own peace of mind an Autologous Stemcell transplant with the R-BEAM regimine. Cancer returned in June just before wedding. We tried MTX and Rituxan. Up until sepember when we were about to complete this cycle the cancer was shrinking. However I noticed head and back aches before coming in for the last one and I requested an MRI first before starting the chemo. I was afraid the cancer had already come back. Unfortunately I was correct. I was put on steroids and started radiation immediately. I had to make a choice between a permanant tube being installed in my brain that drained the extra cranial pressure into the lining of the stomach (shunt) or risk it and hope the sterioids will take care of the swelling during the 25 doses of radiation over one mo. perioid. So far, it has been a good decision and we have completed the radiation successfully and the most recent mri shows no evidence of any present cancer cells. That is really good news.
Have you been able to continue school at all since your diagnosis? Graduation has been delayed 2.5 years, but it is one of my highest life goals along with writing at least one book about what I have learned about fighting cancer these past three years (it will be 3 yrs in january 13 2009). I want to #1 heal my body conventionally and with other natural methods, and #2 help others (make more positive contributions to the world (help others deal with their suffering).

Can you tell me your "engagement story"? From your blog it seems that it may be relevant to your diagnosis?

(this is Katie writing now, directly from my journal-- warning, it is long! Please feel free to take the parts you think are most meaningful). April 1st, 2007 (the engagement took place Friday, March 30 or 31st)This is no April fool's joke- I am engaged! Brian totally surprised me. Friday night he told me we were going on a date outside, but it wasn't exactly a date. Mom called and wanted me to stop by her house to pick up a bag that Brian brough her. I grabbed the bag and hopped in my car and began reading the little booklet, "Katie's guidebook to a night of sweet romance and anticipation" So adorable! I read the next page and it said, "what does Brian have up his sleeve?" At that point I was pretty sure he was going to propose, but not completely sure. It was after I put in the CD that he had made (in the bag) that I realized he was going to ask me to marry him. It was excxiting and emotional, Brian was blowing my socks off, and I didn't even know what was to come! So I stop by my apartment to get my black jacket, wine, and candles (according to his instructions). The next page in teh guideook led me to his mom's house to enjoy decorating his house with the rose petals, flowers (from teh bag) and candles. His next surprise was an orange notebook full of letters, poems, and sentimental notes we had written eachother over the last 2 years. reading those notes, I was rouched by the friendship we had from the start, and the different seasons of our relationship. It was a sentimental experience (I love those as Brian knows). I finally finish the notebook and the next clue led me to the place with two rocks and a tree. I walked to the woods and took the two track that we often run and bike in the summer. The rocks looked to be glowing--there was a large candle with a note that siad, blow out the candles as you go, our love will be a light in the darkness". It was so beautiful when I walked up to it, it was almost mystical in appearance. I started on the two track and dreamt about being proposed to. It was a perfect temp. outside with a light breeze. Just ahead was the first candle. I thought Brian was holding it, but as I got closer, I realized he had put it on a sand hill. I blew it out, picked it up, and cont. on. There were probably 5 more candles and they were spread out enough so that I could have fun anticipating between each one. It also helped me to know I was on the right track. When I finally reached the river bank, there were 3 cancles leading me towards a large rock. I could see a trail of lights ahead of me leading to the river. I saw a red candle (Brian) moving around about 30 sec. prior. on the rock was a cnadle and another note/poem. It read, "say outloud-who is this man who loves me so?" So after a moment of regaining composure (I was laughing and crying) I said it outloud. Brian then lit the fire, an dthe flames went up with a loud whoosh! I walked the candle-lit path down to Brian, then stepped to the side because the fire smoke was blowing thickly over the blacket. Brian then took my hand and sat me down next to him. He asked how I was doing, and I was full of squeals and "wow, Brian's". I was anxious for him to ask me th equestion, but his plan was to enjoy the moment. he was talkin gabout the process and some reflective thoughts, and I finally said, "I'm ready!". So he said, "Katie Marie, will you marry me?" and I said, "yes!" and we hugged and I cried-- then he took the ring from a beaver chewed stump and put it on my finger. Wow! It looked so pretty! It was the perfect ring. I knew it even though I couldn't see it in the light. Brian took one of his candles so we could look at it closer. We walked bak and I called some family and friends. Brian cooked Lake Trout for dinner. Even though I didn't want the night to end. I'm sure Brian slept well knowing his efforts were recieved well.


Can you tell me about your "honeymoon" at Karmanos and what that experience was like? I read in your blog that Katie won a three-day all-inclusive honeymoon package to Hawaii, but am not sure if you were able to go?

We spent two weeks in hawaii camping, cooking our own food except for one Luau and a couple romantic dinners, 3 Islands, renting a car, snorkeling with dolphins in the wild that we found ourselves for 45 min, swimming with 1500lb manta rays at night with bright lights on a tour boat for an hour, hiking the Na Pali Coastline. Amazing. Someone gave us travel vouchers they couldn't use, but we did (that means air tickets were free)! We haven't used our all inclusive package yet. We are thinking DR when the health is thriving again.

Can you tell me about your current condition and how it is being treated? Are you being treated currently at Karmanos?

Just finished radiation. Karmanos is still the place to be for conventional treatment in the region in my opinion. It has been worth the 4.5 hour each way trip. You can do it in 3.5 if you push it. I recommend it to everyone.

What particular strategies have you employed to maintain such a positive attitude during your treatment?

What I have learned:Adversity does not define who you are. How you react to adversity does.Positive thinking. Setting healthy Boundaries from stress (intra and interpersonal boundaries is crucial for stress). Training the mind to reduce negativity and stress no matter what you are going through.Forgive people freely. I claim to be just a baby a learing how to do this. Only 3 years of practice. People really don't know what you are going through no matter what they say. They can relate in some ways but each cancer journey is different.Fight one battle at a time. Keep the big picture in mind.but you can plan and totally prepare yourself the entire realm of possibilites and circumstances you find yourself in. It is okay to think about it but I don't spend too much time worrying about what could happen. That will drive you nuts! Believe me! It happend to me many times!You do the best you can with what you got. I have given myself freedom to die if the suffering becomes too much. (That might not be publishable, I understand)

Dealing with extreme suffering: I have had lots of practice with this.

When suffering is the highest I check the clock in 30 min intervals to determine If the pain and suffering are worse or better. I have had no more than a 3 day period when the pain and suffering has only increased. Don't stare at the clock that makes time go slower. Time is like a mule if you push too much it won't move very fast. I allow myself to cry and grieve. Lots (3.5 years starting bfore cancer) of counseling -crucial with an amazing counselor in my hometown Leah Simontal, MSW - please put her name in article. In our marriage Katie and I practice mutuality which means that we try to serve each other's needs equally as we can. During the (3 years) cancer battle Katie, has been my best friend, girlfriend, fiancee, and now wife when needed to willingly puts aside her own needs and puts my needs first. We dated for 4 years - 3 of them were cancer battle years. She has carried me through this. Her sacrafices and dedication and nurturing love revives me to life when one health crisis hits after another. She gives me so much strength and love to live.

Can you please share your thoughts and feelings about the care and treatment you've received at Karmanos from all the doctors, nurses and other staff you've encountered?

Other nurses that need to be in article, NP Kim O'reilley, NP Debbie Ward, the entire floor of 8 Webber North, especially my primary Nurse Agnes Kiluk, Karen, Michelle, Annette, Danny, Agatha Bomarrito, MSW. Sorry for the lack of last names.

Can you tell me a bit about your support system during this time, in particular the support your wife, Katie provides and what it means to you? above

My mom and dad have been here for me to do anything. So many friends and family have stepped up to the plate at desperate times I've lost count. The community of Big Rapids, the hockey community, the education community - right up to the superintendents and principals, our landlord Kathy, strangers and acquaintances sending random money and cards. I feel like I have armies of people praying for me. The greatest part about my cancer battle has been the love I have felt from other people. That carries me through this, too.

Your aunt, Janet DiFelice, said she is also currently being treated at Karmanos. Can you share your feelings about going through cancer with her?

Aunt Janet is one of the most caring compassionate people I know. She is not only battling ovarian cancer, but she has a daughter with special needs who requires a lot of attention. She is an enormous inspiration to me, she has taught me a lot about grace and forgiveness, and I cherish her. Before she was diagnosed with cancer she did a cancer walk in honor of me. I can say so much more. It is hard to draw the line.

What's the most important thing you'd like readers to know from your story?

1. thanking people 2.my answer to the pos attitude question. Have fun with the rest of the stories. This has been therapeutic for me to write and it will help people who check my blog. I'm excited to see what you put together!

Is there anything else you'd like to add? Anything I've forgotten to ask?

Great questions - I'll keep thinking, too.

May I e-mail you if I have further questions?

of course, call my cell phone anytime Great questions! This has been a lot of fun! I can wait to see your first draft. If we have the energy we will be posting more pictures from our blog that you can use. I'll send you a copy of our wedding slidshow too. We will keep refining this and eventually post a version to my blog. I think there is a lot of new information for people who regularly check the blog. We will try not to send info more than once. I want your feedback, too on my questions regarding thanking people. All I want are some names in there.


On Fri, Oct 10, 2008 at 6:46 PM, Brian Tomczyk <emailbri@gmail.com> wrote:
Jeff,Thank you for such a prompt reply. I do need a deadline because I am currently dealing with a health crisis. Thank you very much, and I look forward to meeting you one day! Brian Tomczyk


On Wed, Oct 8, 2008 at 5:01 PM, Jeff Samoray <jeff.samoray@grigg.com> wrote:
Hi, Brian: I'm a freelance writer working with the marketing team at the Karmanos Cancer Center on articles for HOPE Magazine. Your aunt, Janet, told us a little about your story and encouraged us to write about you. Thanks for referring me to your blog when we spoke by phone yesterday. I've read through the whole blog and have attached my interview questions in a Word file, with space below the questions for your answers. I know that you're currently undergoing treatment, so please respond when you feel you're able to do so. I've tried to ask questions that will help elaborate on some of your blog postings without asking for too much repetitive information. If you prefer to speak with me by phone instead, I would be more than happy to do that. Thanks in advance, and best of luck with your treatment!

Olga picture

Here is a picture of me sailing with the Olga crew in Traverse city probably last summer. I have been sailing with them for five years. They are great people!

Wedding Pictures

Our wedding photographer keeps updating her photo page and adding new pictures to it.

http://www.heathermariephoto.com/Katie

There are a ton of wedding pictures on there now and the 'proof' has been removed.

Thanks Heather!

Back Home...

So, I survived the week of crises and I am deeply appreciative of that. I returned from the hospital on Thursday night. I spent Friday in Reed City, MI working out the details of my radiation plan.

I have been feeling alright. I'm eating really healthy raw organic veggis as the main portion of every meal again. I don't eat refined flour, wheat, sugar, or dairy. I've been eating like this for a few months now and I do have more energy and feel healthier.

I am also trying to decide on what alternative treatments and supplement to begin.

I am back at school pursuing my degree this morning and I think I can handle my responsibilities well without overburdening myself. I'm going to take it one day at a time. Staying active in school will help keep my mind on other things than just fighting cancer. I think I would go insane if I was to take a medical withdraw from school.

The hardest part of my recovery so far is by far the major doses of steroids I am on. They make me feel agitated most of the time and keep me from sleeping a restful night. It reduces swelling so it beats having a permanent shunt installed in my brain with a tube draining it into my stomach.

Thanks so much for the kind words and thoughts that have been pouring my way!

Isn't Brian's attitude awesome?

This is Katie, Brian's wife, writing today. We received good news this morning. :)

Brian had an MRI last night, and it appears that a shunt is not needed--the hydrocephalus shrunk to a safe level (whew!). The doctors have assured us that radiation is attacking cancer cells and also protecting Brian from hydrocephalus (as a result of the cancer disturbing normal flow) for the time being. It is also positive news that the docs here are trying to set up radiation in Reed City (rather than in Detroit) for the remaining 15-20 sessions of his treatment plan. So far he's had 5 days of radiation (none on Sunday).

We've been at Karmanos for a week now, and going home, sleeping in our own bed, and waking up to a flowing river out of window sounds really great.

Thanks so much to everyone for your prayers, love, and phone calls! It is a support just to hear your voices. Also thanks to Geoff May, Josh and Shane (and Daniel and Lillian), Aunt Linda, Jessie, Trevor, and Tina, Aunt Cathy, and Laurie (mom) for the company!

Another update

I was scheduled to have surgery today at 2pm, but I changed my mind this morning with the help of a doctor I really trust. We are going to wait for the radiation to work a little bit before deciding if a shunt is truly necessary. I really don't want another hole drilled in my head if it isn't necessary.

I really don't know how vulnerable to be on this website because anyone can read it, but things have been scary lately. I was hoping to come to Karmanos on Friday and receive another round of chemo and then go home to normal life. That didn't happen and now Katie, the doctors, and I are wrestling with questions like what is the best route to simply lengthen my life... quality of life questions and what is the liklihood of a cure?

More information will hopefully come our way tomorrow.

Medical Update

The swelling in my brain due to the blockage of spinal fluid is not due to any one tumor mass in my brain. The neurology people think that the lymphoma is keeping the fluid from flowing regularly. They have decided that the best thing to do is to have a drain and valve (shunt) put into my brain to drain the fluid into my gut when the pressure rises.

I was hoping that the radiation would alleviate the problems associated with the swelling, but it is looking like surgery is most practical option for relieving the swelling problems that are life threatening.

So, tomorrow, surgery. Hopefully I will be able to go home on tuesday or wednesday. I can hopefully continue the radiation regimen in Reed City. The question remains as to weather there is lymphoma in the spinal fluid. I am conerned that there is a risk of it spreading into my stomach once the shunt is installed.

More Pictures Added to Wedding Picture Blog

I added about twenty pictures to the wedding blog today. I'll keep adding more pictures to share as they come our way.

www.brianandkatiewedding.blogspot.com

Wedding Pictures!

Our photographer has given us access to a group of photos that she took before the wedding. Here is the website she is using for now. Sorry for the 'proof' watermark on each picture. At the moment I don't know how to access them without the watermark.

http://www.heathermariephoto.com/Katie/

Katie and I have received pictures from so many attendees. Thank you very much!
I will be adding more and more pictures to the following page. Right now there are only a few, but I will be trying add clumps of ten or more on a single day, so check back for updates and pictures you don't already have.

Check here for the pictures from friends and relatives:

http://brianandkatiewedding.blogspot.com/

I want to congradulate Nick Edwards and Amber Hendrickson on their recent engagement. May the wedding season continue and may they have a wonderful marrige!

Radiation

Thankfully, radiation is painless. The people in the radiation department had a great personality. It really makes life easier when people are friendly.

Radiation Started

So they stuck me in a giant microwave for ten minutes and now my brain is medium-rare.

Chemo Scrapped and Radiation now in effect

I was hoping that the chemotherapy would put me into another remission; however, that is not the case. On tuesday I noticed some backpain and a headache. It got progressively worse the next few days and so I called the docs in Detroit to schedule an MRI to check-out what was going on. So far, I have a perfect record for knowing when things are not peachy neurologically. Unfortunately, I was right again...

Apparently, there has been some blockage of my ventricles of cancer. To make a long story short the doctors concluded that now is the time to do radiation to prevent further hydrocephalus(pressure + h20 on the brain).

This is very disappointing to me because radiation is saved for when the chemo stops working. I was hoping that would be further in the future.

An amazing summer so far

Above pic: Katie and I in Anchorage, Ak in July

Since I last posted to the blog I started chemotherapy again, got really (chemo effects + stomach flu) sick, got married, had some more chemo, one of my best friends got married, went on a honeymoon to Alaska and Hawaii, and had more chemo, came home, rested for ten days and had more chemo. So, here I am waiting to go home from Karmanos Cancer Center after another round of chemo.

The cancer is shrinking.

I have decided to go on a really strict anti-cancer diet called the Budwig diet. I have made a few changes to it. For example I will be implementing ideas from the PH diet and I will be eating small portions of meat occasionally. Some people use these diets as alternative to conventional medicine (chemo and radiation). However, I am hoping this diet will extend my next remission.

It's Go-Time

Thanks for all of the emails, phone calls, thoughts and prayers.

I spent the morning yesterday doing and MRI and CT scans. The afternoon I spent with the relatives on my dad's side.

Today I was able to sleep until 9am which felt good because the night before I only got four hours of sleep due to the extra couple hours of driving at night. My sister Stacy drove me down to stay with relatives Saturday night. We ran smack into the huge storms that spanned 96. We were traveling at 40mph and the storm was traveling at 35. We decided to go south and exit the storm after we stopped in Portland, MI to check out the weather reports on the TV. We decided to drive south and go to Ann Arbor rather than our original plan of Flint.

Stacy and I drove to the hospital this morning and I began my treatment of Rituxan. Tomorrow, I go on the same floor I spent so much time before: 5 webber north.

This summer I will be spending every other week in the hosptial. On the Monday I arrive I will receive an infusion of Rituxan. Today's infusion has taken five hours because it is the first time I will received so much of it. Tuesday through Friday I will be on 5 webber north - the same floor as the previous episodes of chemo/cancer.

I feel decent today. The right ear is still ringing and that is quite annoying. Emotionally I am doing pretty well. I can't wait to go home and start gearin' up for the wedding!

cancer has returned

Indiana Jones has reappeared on the big screen, and Lord Stanley's Cup is not the only thing back in Detroit.

The cancer has reappeared, also. I am back in Detroit a lot.

The good news is that the wedding is still on and possibly the honeymoon is, too.

I'm doin' the best I can do with the help of my family up here and we're going to continue to fight this thing the best we can just like we have been doing.

Milestones Met

I decided not to write lately because there hasn't been much excitement on the health front. That's a good thing.

Yesterday, I visited with the docs and they had nothing but good news for me. First, I met with the Stem Cell doc and he told me that all is going according to plan. Then, I met with the neurosurgeon who chopped on my head last July and he said all looked good from a vascular perspective. Finally, I had another MRI. The drive home was wet, but not slick.

This could be the last trip my mother makes with me to the doctors, now that I can drive. She has made so many sacrafices to get me to Detroit, back home from Detroit, taking time off of work, running errands, and advocating for me with the doctors. She is a real hero.

I can now drive, go in public without the mask on, and I learned that I will eventually be able to study my spanish in a Latin American country. That last point is really important to me for I am hoping to be very proficient in the Spanish language by the time I graduate from college.

I've been busy lately with homework, wedding details, reading my old history texts I never had time to delve into, reading some fiction, cooking stews, following politics, watching '24' and 'Lost' on DVD, and going for long walks/hikes. Katie and I went on a four mile treck through the woods on Sunday. It was a great workout and the trees were all frosty with snow.

I've been eating more fish lately

It didn't really feel like a weekend to me because I have nowhere to be on weekdays. The only thing that changed in my world was that my mom and sister were home while I was home.

Katie has a runny nose and people at work are getting sick, so my mother had to enforce a restraining order on her this weekend. Not really, Katie voluntarily kept a safe distance between us. I really want to be around Katie... so, if you work with Katie please take a multivitamin, eat fresh citrus, wash your hands regularly and get good sleep so you stay healthy. She's the best medicine I've got!

Wednesday, I go back to Detroit for my first post-chemo brain scan. I go back again on Monday for a doctor appt to get the results of the scan and further instructions for taking care of my body.

I think that this is the last week of the neutropenic diet - the diet in which I am advised to not eat fresh fruits and veggies. So, if that is true then I am going to eat like Peter Rabbit next week.

What to say to someone who has cancer

My days have been kick-started with a bowl of oatmeal or hot Grape Nuts. I usually get hungry a couple hours after breakfast unless I eat oatmeal or Grape Nuts. Hot Grape Nuts with honey and milk are one of my favorites. Being home all day I get hungry often. I have been trying to make changes to my diet like eating less sugar and refined flour and eating more fruit and vegetables. More and more, I'm realizing how hard it is to break eating habits and to create new ones, but I am slowly winning.

I have been reminiscing on some of my experiences of the past two years. It is difficult to find the right words to say to somebody who has cancer.

As a cancer patient, it can sometimes be frustrating when people don't have the right words to say to you. Over time, I have learned to give people a lot of grace when they try to give words of consolation. For me, I have a few examples of things people have said to me that doesn't make sense.

I am going to be really honest and frank. If you are offended by this please consider that I personally have said the silly things below to others who face difficult circumstances. I don't hold it against anyone who has said these things to me or anyone else. This is just my experience of what I didn't like to hear, what I would have like to have heard, and what I've learned to say.

"It's going to be alright. I just know it." Really? It's not very convincing when one is really not fine and everything is not alright. What makes this statement frustrating and seem insensitive to me is that typically the person telling me this does not have the authority to make that assessment. I would think to myself, "Are you a doctor? No. Then how would you know?" Doctors are the only people in my mind who have the authority to tell me that because they usually have evidence to support that statement. I can only think of one other exception and that would be if someone was saying those words in a religious or spiritual context: "It's alright, even if you lose everything or die."

"Don't be scared." Same as above. Being scared is a natural human emotion like sadness. It is okay to be scared. Worry, on the other hand, is different, in my opinion. Worry is based one's conscious thoughts and with work thoughts can be guided.

So, what I have learned to do is translate what the person says into what the person probably means to say. When I hear these things being said I tell myself that the person probably means,

"It is okay to be scared and I'm scared too. What matters most is that we/I are/am here for you no matter what happens."

And that is a great thing to say.

For me, it is most important to be reminded and assured the people in my life (Waldos) are here for me.

Home

I arrived home Saturday afternoon. Since then I have been unpacking my luggage. I have tried to maintain the routine that kept me sane while at the hospital.

It does feel good to be home, but transitions are tough to make sometimes. Reconfiguring myself to what normal life will look like these next few months is difficult. I have class work to do online, food to cook, paths to walk, but other than that I am alone at home most of the day. This leaves a lot of time to sit and ponder life's deep questions. Too much of that, and too little action and human contact can be abrasive to the soul.

My porthole is healing and my energy is returning.

Rather than walking the halls of the hospital, I have been going for walks in the woods and by the river near my mother's house where I am staying. The powdery snow we have been receiving just sits on the hemlock and cedar trees in the woods. The sun rays through the lake-effect snow clouds make the sky glow. I have decided to take a camera along with me for now on for when I see amazing sights. This morning the sky cleared after dumping several inches of snow overnight. I walked out into the middle of a nearby hayfield and the sunlight glittered across the surface of the snow. The entire field glittered. Diamonds are beautiful for how they glitter in the light, as I learned in the process of picking out an engagement ring last spring. However, the several thousand gallons of water that sat as snow on the field was more beautiful than any diamond. I have seen one of the worlds largest diamonds at the Smithsonian museum in Washington. This morning's experience again proves to me that the greatest joys in life do not necessarily cost a lot of money if any at all.

Speaking of money, I am planning our honeymoon for this summer. We have decided to experience Hawaii for our honeymoon. Katie went to a bridal show on Sunday and just yesterday learned that she won a three day honeymoon all-inclusive package. It doesn't include airfare and there are a few stipulations. We will know tonight if it is the real deal or some kind of shady scheme. After traveling all that way we would want to stay a while for some outdoor adventure, which is what we are all about. I have narrowed down Kauai or the big island of Hawaii for our trip. We would be renting a car, camping, staying at travelers' hostels, and bed and breakfasts. We don't think that we need more than a couple days of resort luxury. We plan on doing a lot of hiking, biking, snorkeling, and fishing.

I'm comin' home - Thank you Besers

Since Tuesday I've been staying with relatives in Birmingham. They have taken really good care of me by cooking me food, buying me groceries, doing my laundry, sharing their stories, sharing their home, and really making me feel like family. They provided me with a perfect transition from the hospital to returning home. This 'buffer time' has been really good for my soul - thanks to the Besers.

Today is the day I've been waiting a long time for. I'm comin' home! The doctors removed the catheter leading to my heart and gave me the green light to return home to Big Rapids. After I finish writing this I will leave Birmingham and drive to BR.

So, the Waldo analogy wasn't complete. All the chaos of life is easy to get lost in. The whole experience of losing just about everything takes life and concentrates it down to its bare essentials, much like the process of making of maple syrup. I have resolved to live life surrounded by Waldos. What I have found is that my life is lived best and my spirit is nurtured with work, play, friendship, and family. These are the Waldos I've been discovering, lately.

Personal tragedy and loss - Looking for Waldos

People have told me that they admire how I can stay positive through my battle with cancer. Honestly, I don't really understand it fully, myself, but I have thought about the subject a lot.

Face it, no matter how hard we try to travel through life in a straight line our course in life looks like the scribblies of a preschooler. Suffering and personal tragedy is not given only to certain unlucky individuals in the world. It is something that all human beings have in common. Wars, plagues, ethnic cleansings, famine, and disease dominate human history. Suffering and personal tragedy are a part of every human being's experience who has ever lived.

Acceptance of this reality has helped me realize that I am not the only victim of suffering and personal tragedy in the world. I think to myself, "I am a human being, things like this happen to people every day. It is very scary, it hurts, and its sad. It's also comes with being human."

As Americans we feel entitled to pensions, steady economic growth, a house, car, computer with high-speed Internet, secure job, retirement, social security, and a plethora of other entitlements (especially the baby boomer generation, but Generation Xers not so much).

As Americans, we are blessed with a life expectancy of 77.6 years. The other day I heard someone say when they heard that a 76 year old man died, "Wow, that's young." I couldn't help thinking, "Are you kidding!" If you think of the longevity of people in developing countries like Botswana have a life expectancy of 33.9 years.

So, what can I do with this insight? I can wallow in self-pity, become extremely cynical, hide myself from other people, and act out angrily toward others... and I have done all these things and continually fight against doing these things on a daily basis.

What I realized is that that is no way to live life. Sure, I am still somewhere in the grieving process (http://www.hns.org/Portals/1/Stages%20of%20Grief.pdf) and it takes work and time to finally reach acceptance.

Whether I have ten months, ten years or ten decades to life I would rather live life with another mindset. I live each day thinking, "Wow, I am alive. Today is a bonus day. Life is a gift - not an entitlement."

So, where does Waldo fit into all of this?

In January 2006 I was lying in a hospital bed with a fresh hole in my skull and cancer eating away at my precious nervous system. Things couldn't get much worse; however I felt greatful. Maybe it was all the narcotics, but I still think of my enlightenment in this way:

In the chaos of life we scan the pages of life looking for happiness. Much like a kindergartener looks for Waldo in the pages of a "Where's Waldo" book. For me, the intense physical pain and realization that I was so close to dying somehow drained the chaos off the page of the Waldo book into a puddle of ink on the floor. All that was left on the pages of life were/are all the Waldos staring at me.

to be continued...

Lots of excitement today

I left the smells, sounds, and people of 5 Weber North today at 3pm. I am now staying with relatives in Birmingham until at least Friday. That day I have an appointment with the doctor and surgery to remove the catheter that leads into my heart. There is a 50/50 chance the doctor will let me go home to Big Rapids on Friday. If he doesn't let me go home I will stay in Birmingham until another appointment on Monday or Tuesday.

The transition from the hospital has been exhausting. My stamina has not returned. My body and soul are dethawing from the marathon hospital stay. However, my hosts are amazing. I have a comfortable room and plenty to eat. I ate dinner tonight slowly not only because I am a slow eater or that my stomach is still recovering from chemo damage, but because my taste buds were throwing a party.

Day #19 Farewell room 5207

This is it. In the time it takes many sailboats to cross the pond to Europe or the Space Shuttle to orbit the earth 304 times, I have not traveled further than a 'stones throw' away from my hospital room.

This morning the doctor told me that I will likely be discharged from the hospital Tuesday. The only thing that will keep me from leaving is if my platelet level drops, get an infection, or spike a fever.

One of the clinical nurses came by today to check me over for any 'red flags.' She saw the irritated zit on my forehead and asked me if I had cut myself with the buzzer when shaving my head. I told her plainly the red dot was there because I am a Hindu. She was speechless for a moment and then I told her that it really was a pimple.

As far as how I am feeling, I am tired. My body will be slowly regaining its physical strength for the next month. My immune system has been reset and is now about as strong as a newborn baby's. It will increase in strength exponentially over the next month and will be slowly building to its normal strength right up until December. Then I get vaccinated again. The most crucial time will be the next three weeks, according to the doctor. I will be home hopefully early next week. This might be the last update from Karmanos.

Farewell room 5207.

Day #18 Almost there...

The doctor thinks I can leave the hospital some time in the next few days. This whole marathon stay has went much better than expected. The one day that I was most sick from the chemo I slept through most of it. The days did not drag on slowly. There was a daily rythm that I welcomed and I did not try to fight it. Katie was here for thirteen of the days and that made all the difference.

When I leave the hospital this week I will be staying with family in Birmingham. It's only a 30 minute drive to the hospital. They are very friendly and hospitable people. I will have to stay a short drive from Karmanos as the risk of complications from the treatment decrease. During that time I will have one or two trips to Karmanos for check-ups before I can go home.

Two years ago from today my journey with cancer began. It was Friday January 13, 2006.

Day #17 Great news today!

So, I woke up early this morning again with the 4:30am blood draw and watched fishing shows on ESPN before falling back to sleep. I think my hunger for food is slowly returning and that is what is keeping me from falling back to sleep. I am just now able to eat solid foods and the two bowls of raisin bran seemed to do the trick this morning and I slept another three hours.

Nurse Danny who loves heavy metal music just came by and dropped off some extra bbq ribs along with my neupogen shot. He has a great spirit and is a great all-around person. Dan is extremely generous with Katie and me. He and the other nurses will sometimes order-out for food and Dan will ask us if we would like anything. More than once have I eaten the leftovers of pizza, hot wings, or ribs. Little things like that really make a difference when you're away from home and on a steady diet of hospital food.

The great news I was surprised with today was when the Doctor said that my blood counts (number of really important cells in my blood stream) have been rejuvenating faster than they expect for transplant patients. He said that at this rate I might be able to leave the hospital as soon as this Monday. Whoa! That is five days earlier than what we were expecting! So, I can't come home to BR yet, but will have to stay somewhere close to the hospital for a week or two so if anything major happens I will only be a short drive/walk away from the clinic here at Karmanos.

Day #16 Still on the upswing

Today I felt even better than yesterday. Katie is here again and that makes the time go by so much better. We talked a lot about wedding ceremony ideas and batchelor party plans. We are really getting excited for our wedding in June.

Day #15 Losing my hair, but not my mind

Last night I had sweet dreams of experiencing the ocean. I spent the morning watching spearfishing videos on You Tube that were fascinating and I read a little bit. Later in the afternoon I painted two watercolor paintings.

Physically, I'm feeling a bit better than yesterday and I managed to walk a mile today. My platelets dropped to a dangerous level, which has been expected, so I received my first blood transfusion to boost them up. My mohawk is looking even more weird now that my hair is falling out. In a few days my blood components like white blood cells and platelets will start to increase noticeably.

Day #14 Two weeks and I'm holdin' up okay

I really enjoyed watching the sun come up, blue skies all day, and a beautiful sunset this evening. After sleeping all day yesterday and most of the night last night I still felt pretty sick today, but somewhat better.

My sinuses are no longer pounding, my lungs and back don't hurt as much. I still have body aches and I have to drink fluids very slowly unless I get the hiccups or worse. The Immodium has taken care of the GI grumbling and explosive activity. My platelets are dropping rapidly which means that I might have to have a blood transfusion and I will bruise much more easily. Tomorrow I receive a shots of Neupogen that are derived from ecoli. That will get my new bone morrow pumping out stem cells at a much more urgent rate. In a few days my counts will be back up and I will be feeling a little better. Every morning the nurses mark my progress on a chart.

Day #13 Here it comes...

I could really go for a feast right now, like this one my mom gave me on my birthday a few weeks ago... Lamb, yum.

The doctors came to greet me this morning. My head was extremely congested, lungs hurt, had hiccups and was eating at the pace of a snail. They asked me if I was feeling nausea and I hiccuped and then their answer was given to them in a bucket. I slept off and on the entire day thankfully because I feel like I have the flu. My blood counts have hit rock bottom, which explains why I feel like I do. I will probably feel like this for the next several days. I am on a liquid diet until my appetite returns. On a good note, I was able to slowly limp a mile around the halls.

Thanks for your thoughts and prayers as I enter this grueling stage of treatment.

I will try to post again tomorrow depending on how I am feeling.

Day #12 Phew, time goes a lot slower without Katie here

My white blood cell and platelet counts continue to drop lower and lower as they die from the chemo and the end of their life cycle. They will bottom-out in a couple days. If my platelets drop low enough I will need a blood transfusion. My new immune system that is starting to form will start producing new cells around Thursday. I am now feeling the effects of the chemo a lot. I am feeling more fatigued and it is difficult to keep food and drink down. I haven't thrown up at all, thankfully, but diarrhea and hiccups have been present.

I was told today that the eighteenth (+ or - a few days) I will be able to be discharged from the hospital. After that, I will be able to go to guest housing or somewhere nearby for a few day so I can visit the clinic once a day for tests. So, I have a near term target to shoot for. Another near term target is the arrival of Katie once again. She is the best medication yet.

I had a lot of visitors yesterday. My dad's cousin's Don and Christine Biser came by go give me encouragement and enjoyable conversation. Later, my dad's mother Josephine came by with my Aunt Gail and Uncle Alex. It was great to see them all and I really enjoyed their visit. My Grandma Helquist on my mom's side also came by to say hello.

Day #11 Katie writing here

Brian has given me the opportunity to write in his blog today! Brian and I agree that yesterday was Christmas revisited. My sweet sister, Allyse, and her stellar bo, Derek MacIntyre, surprised us with a MacIntrye hockey stick signed by the FSU hockey team. Brian likes orange Vitamin water, and they brought him a 24 pack. My mom, Denise, sent a Meijer's green (reusable) bag with fun and helpful items, and shortly after my mom's sister, my kind Aunt Dawn, arrived with the same Meijer's bag with thoughtful goodies (no wonder they're sisters!) Both Brian and I feel blessed by the thoughts, prayers, gifts, and service of many. Thank you everyone for your uplifting support.



I've observed Brian to be doing really well-- his smiles ease my anxiety about his discomfort. I think he has a high pain tolerance. Sometimes he has hiccups or burps that sound uncomfortable, and sometimes when he's not feeling well, he turns pale. The smell that was coming out of Brian's pores and mouth (due to the preservative that was mixed with his stem cells), a garlic smell, is almost non-existent now. It has now been 48 hrs. since his stemcell transplant. The doctors told us that after 48 hrs., the stem cells should begin grafting into the bones to create new bone marrow. The doctors also told us that in the next few days, Brian will be feeling the worst. His white blood counts are supposed to bottom out-- meaning that he will not have the ability to fight off germs. To my relief, the nurses brought a container of alcohol wipes into Brian's room this morning. The Hepa filters on the floor help keep Brian protected as well. So- it's a germ battle for awhile, but at least the cancer is in remission and we're on the road to healing!

Day #10 Last full day with Katie

Last night I went to bed with a lot of nausea and woke up with it in the morning. I feel weaker today, but I am slowly feeling better after taking some meds and going for a walk.

The stem cells were preserved with DMSO so they would not be destroyed when they were frozen. The DMSO leaves my body through my lungs. There is a distinct smell of garlic or buttered popcorn in my room. Because it comes from my body I can't smell it, but everyone else can.

Katie leaves tomorrow to go back to work. She has been an amazing trooper these past two years of appointments and hospital stays. There is no way I would be doing as well as I am without her presence and love. I probably would have gone insane without her. I was concerned with her spending 10 days of vacation here at the hospital - a huge sacrafice in my perspective. I thought she might get bored or go stir crazy, but the other day she said she feels like she is on vacation! She told me it's because she has lots of time to read, make wedding plans, talk on the phone, and workout and shower at the gymn at the rehab institute. On our wedding day when she will say "in sickness and in health" I know she really means it.

We are in the process of building a wedding website where guests can RSVP, get info on our gift registry, get directions, and a lot of other information. www.brianandkatie.weddingwindow.com I found if you say wedding website too many times then one sounds like Elmer Fudd.

Day #9 Stem Cell Transplant Day - Infusion

Today, the stem cells that were taken from my blood over a month ago were welcomed back into my body today!

"Welcome back home, stem cells. Now get to work!"

The top left picture is the warm water bath the bags of cells were thawed. Once thawed, the bag was hooked up to my IV pole and straight to the catheter running to my heart.

The orange bag contains stem cells. The fluid was not completely thawed, but rather slushy. This caused me to get the chills.

I was nervious about this procedure because I was told most people get severe nausea. To help with this I requested extra antinausea drugs and a very small breakfast. During the procedure the nurses and the doctor wanted to hear about the engagement story. Katie and I took turns telling it. That was a lot of fun and we had everybody in the room laughing at times. One of the nurses is from El Salvador and she spoke spanish. I told her "necissito la pis." I need to go pee. It was fun speaking in spanish to her. All these things helped me to relax and relaxing helps the nausea stay away.

Day #8 Day of Rest - Betts and Griffiths

Please keep the Betts family and the Griffith family in your thoughts and prayers.

Today, I get a day of rest. The past seven days I was loaded-up with chemotherapy drugs. Tomorrow my stem cells that have been chillin' in the freezer downstairs will be pumped into me.

Yesterday, Katie and my mother grabbed me some take-out Chinese food. Lo Mein never tasted so good. The food here at the hospital is decent, but the body's experience with chemo and the smells and taste of the food link-up together, so when the smells come so do twinges of nausea.

I was honored to hear from a cousin who said he prayed for me at the Bacilica de Guadalupe in Mexico City. You can read and see pictures of this Latin American holy place here: http://www.delange.org/Guadalupe/Guadalupe.htm This is the location where a poor man (only forty years after Columbus made contact with the Americas) had a vision of the Latina version of Mary. If you look at the pictures notice how she looks hispanic compared to the swedish version s of Mary we see here in the states. She made an image on his cloak that still hangs in the Bacilica. This inspired the uniting of pre-Hispanic Indian mysticism with Catholic beliefs.

Day # 7 Chemo is done

The Mohawk is still rockin'

Today I finished the R-BEAM high dose chemotherapy regimen! I thought by now I would have major side effects, but so far I am tolerating the chemo well.

Thank you everyone for the encouraging emails and phone calls. I feel like I have an army of people supporting me in this battle.

Inside my body my bone morrow is disintegrating. The white blood cells circulating in my blood will not be destroyed by the chemo, as I previously had thought. They will complete their life cycle and by Monday shall be put to rest. That is when I become at the greatest risk of infection. At that point on for nine days I will be extremely vulnerable to viruses and infection. Meanwhile the stem cells will be planting themselves automatically in my bones. They will multiply and eventually start making a new immune system. After that, according to the doctor, my immune system will be about seventy percent by our wedding in June. So, between now and then my immune system will be coming back to life. When I return home later this month I am allowed to have visitors and go for walks, but I will have to avoid crowds.

Day #6 Katie's first attempt at cutting hair

Katie's sister is an excellent hair stylist and considering this is Katie's first attempt I think she did a great job! Look out Allyse!

Today is the last day of Eptoposide and Cytarabine. I have received four doses each day for the past three days. Tomorrow is the last day of chemo and I'm pretty happy about that! Following that day I get a day of rest with no chemo or stem cells. Then the next day my stem cells that were taken from my blood a month ago are melted and injected into my blood stream.

Day #5

Each lap around the floor is a sixteenth of a mile. Above, is a picture of the marker board I use for keeping track of how many laps I have walked. In case you are wondering there is no competition between Jeanne and me. She left a few days ago. I walked two miles today and two yesterday. No crazy side-effects so far other than an upset stomach, loss of appetite, mild fatigue, and headache. The walking really helps. My goal is to walk at least one mile per day. That might be unrealistic considering the likelihood that I will have a few days in which I don't feel like doing anything.