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.