I Wish I Had Something Else to Write About

I started this blog because of cancer, and for the most part it has really been all about my treatment and experiences, but I wish that was not the case.  I wish I had more I wanted to write about than just cancer.  But, I guess until cancer is no longer the dominating subject of my day to day activities, I probably won’t have much else to write about.

I have not written in over a week so this post is a recap of what has been happening.

1. The Party – Sonya, Angela and my Mom pulled off an excellent party at Champps last Saturday.  I honestly don’t know how many people were there, but that room was pretty full and I think everyone had a really good time winning prizes.  I know for sure they had a good time buying tickets to “bid” on raffle items, and to compete for the silent auction items.  Everyone who participated was far more generous than I had anticipated and we raised enough money to pay off the remaining medical and doctor bills from 2009, and get a good start on the bills for 2010.  It is a tremendous relief for me to settle many of these very old and past due bills.  I rarely answer my house phone anymore because at least 2 out of 3 calls are from someone wanting to know when this bill or that bill will be paid.  Some of you may wonder why I have so many bills and be asking, “Doesn’t he have insurance?”  And since a high proportion of this websites readers have contributed to my financial plight, I feel a responsibility to share some details about where your money is going.

We do have health insurance for our family.  As you know, Angela and I are self employed.  I love working for myself and wouldn’t want it any other way.  However, there are a few disadvantages.  One of them is that health insurance is not something that just happens automatically as a condition of our employment.  We are our own Benefits Manager.  The advantageous counter point to this, is that we have our choice of any plan in existence, not just the one or two plans and insurance providers offered by our company.  For many years, we had a very traditional HMO plan, where we paid a monthly premium, had a network of providers and doctors to choose from, paid a $20 co-pay at each visit and had a very typical annual deductible.  In September 2009, after yet another annual increase to the premium, I started shopping around for new plans and talking to a lot of people.  The type of plan that was recommended by several people for self employed families was called a high deductible HSA.  Under this type of plan, you trade a $500 or $1000 annual family deductible for a deductible in the 5 digit range, and in return, your monthly premium is lowered by hundreds of dollars.  In our case, we went from a monthly premium of $445 for three people, to only $198.00.  The theory behind the lowered premium is that an individual will take that money they save each month, and deposit it to an HSA, or Health Savings Account.  This is a checking account you can open at almost any bank and it works just like a standard checking account with printed checks and a debit card.  However, the only caveat is that you can only take money out to pay medical related expenses.  The account works like an IRA, in which all deposits can be deducted from your taxable income…but, you cannot access the money without a steep IRS penalty, unless you are writing a check to a pharmacist, doctor, hospital, optometrist, etc.  Over time, the balance in the HSA is theorized to build up to a high level and even if something catastrophic like a car accident or major illness occurs, you will have the money in the HSA (which can’t be used for anything else) to pay that $10,000 – $15,000 deductible.  We were young, healthy, and had not incurred more than a few hundred dollars in healthcare expenses during any year of our life, so we signed up for this type of plan.  Three months later, I was diagnosed with a disease that would eventually rack up close to $200,000 in healthcare expenses in it’s first year, and although the meter is still running on this year, I suspect that the final bill will for 2010 will run far above last years bill.  So, the short version of the answer is…yes I have insurance, but I have a plan with a huge deductible which I have now maxed out two years in a row.  And in all likelihood, I will max it out or come close to doing so for each of the next several years.  After I am done with treatment I will still require 3-4 PET scans per year to monitor my cancer and those tests cost about $1500 – $2000 each, all of which will come out of my pocket.  Obviously, this all comes on top of all the regular financial responsibilities that every family faces, mortgages, car payments, childcare, groceries, utilities, savings, etc.   So, I thank each and every one of you who have contributed to my medical expenses.  You have helped to shave a good portion of my debt away and in doing so, relieve much of my finance focused stress and anxiety.

2. Radiation – I have officially entered the radiation phase of my treatment.  I started on Monday and have had three treatments so far.  For those of you who get the email notices of my new blog posts early in the morning (if not, subscribe here), I will probably be lying in the Linear Accelerator on Thursday morning while you read this.  I go in at 7:45 each morning and they strap my head to a long skinny table and line up the alignment beams with several marks all over my arms and torso.  Then the staff exits the room and closes a HUGE leaded door (no joke, this door is over 12″ thick) and the machine starts moving around and radiating the Dirty Bastard.  It only takes about a minute or two, and then the technicians come back in and release me.  So far, I feel nothing.  No pain, no side effects, no reaction at all.  While the machine is buzzing, I do get this sensation that I can smell something burning, but I am pretty sure that is just my imagination.  I am planning to make a little video of the experience if the technicians will let me.

The worst part of radiation so far is that I have learned that cancer patients from the Children’s Hospital at Emory (which is right next door to the Cancer Center), also get treated in the radiation oncology department.  This has not been the case with any of my other treatments.  I have never seen kids at my former oncologist in Duluth, or at Winship’s infusion center, or in the hospital.  But they are in the radiation unit.  I have seen a few little ones facing their own Dirty Bastard.  One boy in particular is probably just a little older than Dominic and I see him there with his Dad.  The boy has just the tiniest little bit of fuzz on his head, so he must be ahead of me in the treatment schedule.  Like I said a few months ago, I named this disease the Dirty Bastard because it picks on little kids.  Not fair.

3. Tour de France and Cancer Awareness – If you happened to watch any of the Tour de France you may have noticed or heard about the Nike Chalk-Bot.  Nike has sponsored a device that writes personal messages on the roads over which the Tour de France riders travel.  Anyone who was so inclined, could submit their message to the Livestrong group and some of them got printed.  My friend Joe submitted one for me wishing me well in my fight, and that prompted me to create one of my own.  Joe’s never got printed unfortunately, but I got a notice from Nike last week that mine got printed on July 19, on a road in southwestern France inside the Pyrenee’s National Park.  I enjoyed watching the Tour this year and appreciate everything Lance Armstrong, Livestrong, Radio Shack and the Tour organizers have done during the course of the three weeks to raise awareness for the fight against cancer.  If you didn’t catch the highlights, on the final day of the race, Lance and all of his 9 other team members wore a special jersey, each one with the number 28 on the back, referencing that there are 28 million people in the world currently living with cancer.  The jerseys were not race approved and about 3 minutes into the start, the organizers made all the riders stop, and forced the entire team to change into their regular jerseys in the middle of the street.  For anyone watching, I think this complication did a better job of bringing attention to their mission, than if the organizers had let them go, because it took several minutes to get jerseys to each of them and for them to organize their pinned on numbers and headsets.  All the while, the TV announcers were just talking on and on about why they were wearing those un-approved jerseys in the first place.  Good publicity stunt!

So, to wrap this up I will tell you all that I feel pretty good.  I don’t feel the excessive weakness and fatigue I have in the previous weeks, so that must mean my body is rebuilding itself a little after having so many cells wiped out by the last chemo.  The only effect I can still feel is the mixup of nerves in my tongue.  I seem to be missing one particular taste sensation.  Not sure if it is bitter, or sweet or maybe a combination, but something is still not quite right in there.  But I am eating well anyway.  I am going to take my bike out for a gentle ride tonight to try and get some exercise.  It will be the first time I have ridden in weeks.  I am more concerned about this ridiculous heat melting me, than I am about my body being weak.  That’s why I will wait until about 7PM.  I hope everyone has a great day.

Got One Over on that Dirty Bastard

If you have been reading my posts for awhile, you know the Dirty Bastard is cancer.  For eighteen months I have been fighting against the Dirty Bastard and recently I have been getting annoyed that I don’t seem to be doing as well in the fight as I would like to.  I have complained that every PET scan along this journey, while reporting that I am moving in the right direction, has also revealed that I have not progressed as quickly or as much as my doctors would like.  The tumor created by my Hodgkins Lymphoma is usually shrinking, but not enough.  Biopsy results reveal some information, but not enough.  Analysis on whether to radiate the tumor have determined that radiation treatment might help, but might do more harm than good.  Every step has been just “okay”, and never “good” or “excellent.”  That changed this weekend!

On Friday, I was notified that my test results indicated that the time to collect the stem cells for my autologous bone marrow transplant had arrived and we could not wait until Monday.  So Saturday morning, I checked into the hospital and a specialist from the Hemapheresis Department was called in.  They hooked me up to a series of machines that pulled blood out of my body, separated the stem cells from the blood and stored them in a little bag, and then returned the blood back to me.  It was a painful and miserable process that lasted for four hours.  The goal was to gather at least 5 million stem cells, but they really were hoping for closer to 7 million cells, to increase the success rate of the bone marrow transplant.  At the end of the day, the machine was turned off, the huge needles removed from my arms and when the stem cells in the bag were counted, they had 17 million stem cells!!!!

I am still smiling and get a little chill when I think about how good it feels to have delivered such outstanding results.  I consider this a definitive victory on my part and a trouncing of my opponent in this particular stage of the war.  And it has done wonders to restore my confidence in this process and what I am going through this summer.  I am shedding those negative thoughts about the cancer staying a step ahead of expected results and I am resuming my ownership of this process.  Cancer is still a dirty bastard, but I’ve got the power of hope being delivered by dozens if not hundreds of family, friends and supporters.  And as Christopher Reeve once stated, “Once you choose hope, anything’s possible.”

Harvesting My Stem Cells on Saturday

If the current phase of my life were a prison, I would be my body’s bitch.  In a normal world…not a world where you compare your life in general to prison politics…a body is a pretty reliable thing.  You give it food, fluids, rest, and stretch it out with a little activity and exercise everyday and it will do nearly anything you want.  In fact, I would even say that the mind and the will of the person are in charge most of the time.  The person decides, “I want to go for a walk,” and the body gets to work doing what it’s told.  Sometimes, the decisions are even potentially harmful to the body, but it goes along anyway like any really good friend would do.  “Hey, let’s do another round of Tequila shots!”  The body knows it is not going to like this, but it leaves you in control of the arm to lift that shot and, and it begrudgingly concedes control of the mouth and throat to make sure your dumb self gets that little glass of Cuervo you think you want.

But this week, and I think last week too (it feels so long ago, I forget what last week was like), my body is having a grand old time being in charge of everyone.  You see, I get blood drawn everyday, usually several vials at a time which are used for various tests.  And these tests lead to sheets of paper with lots of little names and abbreviations, each one with a number next to it.  Everything about this week…my schedule, my families schedule, doctors and nurses schedule, the demand on the local blood bank…everything has been slave to these reports.  Every decision is heavily influenced by these reports.  The reports have been given a general name, the counts.  If my counts are good, my doctor can proceed with treatment, I can live a pretty normal life and everything remains somewhat predictable.

But, like every other measure of progress on this crazy journey, the counts have not been good this week and that has thrown everything into chaos.  I am going to compliment myself on my patience and flexibility during this chaos, up until yesterday.  For example, on Monday, when I was expecting to go to the lab nice and early, finish my blood test, get a shot of neupogen and go home, I did not get upset when instead they told me my counts were really low and I needed blood product transfusions.  I made the best of it, even though “it” was the fact that I had to stay in their noisy miserable ward the entire day hooked up to an IV machine and having some strangers blood pumped into me.  I wound up getting some type of blood product, either red blood or platelets, infused every day this week because the counts continued to be uncooperative.  I also lost my appointment to start stem cell collection on Wednesday and get measured and setup for radiation treatments.

Finally, on Friday morning, my white blood cell count was 5.8!  The range of normal for white blood cells is roughly 4.2 – 8.0.   For all of the past ten days, mine has been between 0.6 and 1.0.  We were all happy.  Then more news came…my CB34 count, which is a measure of how many stem cells are in the bloodstream had also risen sharply and it was at an ideal point for collecting the stem cells.  I had just come home from Emory, all 40 minutes driving and had been at the house for 5 minutes, when they called and said, “You have to come back right now, and you will probably stay overnight for collection.”  Normally I would be really happy that my body had finally conceded and done something it was supposed to do, but this was the worst timing.  You see, first thing Saturday morning, I am supposed to go pick up my sister and her husband at the airport because they are coming to visit me this weekend.  I don’t get to see her much and I was really REALLY looking forward to a weekend with a little sliver of normalcy.  The doctors had explained before that harvesting stem cells usually takes 2-3 days, and now they were talking about doing it as an inpatient procedure starting Friday night, when I have guests coming in on Saturday morning.  I was crushed at the timing of all this.

Well, I will wrap this up so you can get back to your Saturday activities.  When the nurses and doctor saw how disappointed I was, they instantly changed their story to, “Well…your counts are so good that you will probably finish your collection in one day, and then you can spend Sunday with your sister.”  And the other thing grinding  on me is that because I am being quickly ushered into collection, there is no time to get on the schedule to have the temporary central line placed.  So they are going to do the collection with the arm needles that the collection nurse showed me two weeks ago and really tried to convince me that I did not want to use that method if possible.  She went on and on about how big the needles are, and how uncomfortable the process can be with these needles.  My personal nurse coordinator agreed completely and has been working with me to try and get the timing of when to install the line in my neck nailed down.  Now that it is no longer an option, they are all telling me, “Oh the needles aren’t that bad.”  The BS was getting deep in our meeting yesterday.

I am not going inpatient after all.  The plan is to arrive at the hospital nice and early this morning (Saturday) and get the barbarically huge needles placed and start the collection.  Hopefully they are right about the one day thing and I will be done by 3 or 4 PM today.  I really don’t want to go back and get those needles again tomorrow.

If you are coming to the party at Champps tonight, I look forward to seeing you there.  Hope all is well.

Fundraiser Update – We have AMAZING raffle prizes

I don’t take myself very seriously and live what I believe is a pretty laid back lifestyle.  I suppose that is why I was a little bit apprehensive when our friend Sonya first offered to organize a fundraising event for me.   I mean, I am not a non-profit, I am not a research facility, I am just a regular guy who happened to get cancer.  But, I went along with it because I know I need the help, and if anything, this disease has taught me to be humble.  This is the most challenging thing I have ever done and if people who care are offering to help, then I have no business telling them not to.

With the big party only three days away now, I am more excited than ever.  And not because it appears that we will raise enough money to pay an hour of my Oncologist’s wage.  I am excited because I know the good people who come to my party are going to walk away with some truly incredible raffle prizes for their efforts.   During the party, which will happen at Champps Americana on North Point Parkway from 6PM – 10PM this Saturday, we will be hosting a raffle and silent auction in which the guests can either win, or bid for really valuable travel experiences and a variety of gift baskets.  Here is a sneak peak at the travel experiences that will be up for grabs this Saturday:

Hotel del Coronado

Hotel del Coronado

2 night stay in resort accommodations at the spectacular, world renowned, beachfront resort – The Hotel del Coronado in San Diego, California.  This silent auction item is courtesy of our friend and colleague Kathi Kelly of KSL Resorts.  If you golf, play tennis, ski or just enjoy fabulous resorts in idyllic settings you need to know about KSL Resorts.  The Hotel Del is located on Coronado Island, across the bay from San Diego and has been a southern California beachfront landmark since 1888.  This luxury resort has been the vacation choice of 11 U.S. Presidents, plus innumerable Hollywood celebrities from Humphrey Bogart and Charlie Chaplin to Brad Pitt and Madonna.  In recent years, the Hotel Del has been rated the #1 wedding destination in the country by The Travel Channel, and it’s sandy expanse out front has been rated the #1 beach in the United States by The Travel Channel.  You definitely want to bid aggresively on this one.

Set of 4, two-day, two-park admission tickets to visit Universal Studio’s in Orlando, FloridaThese tickets have been graciously donated by our friend Michelle at Universal Studio’s Resorts and Loew’s Hotels .  With these tickets, your family or you and your friends will have two days to explore your choice of Universal Studio’s and Islands of Adventure theme parks in Orlando.  These package of park tickets would sell at the gate for $580, but they will go home with someone on Saturday for a bargain.  You are probably going to Orlando for some kind of work conference in the next 12 months, so bid on these tickets and bring your kids down after the conference to explore the new Wizarding World of Harry Potter, plus some world class rides and shows.

Another Florida silent auction item offers a 2 week vacation rental in a private home located in a golf community near Tampa, Florida.  The Tampa Bay Golf & Country Club features two golf courses, a resort style pool, active clubhouse and pro shop, gated entry and is located minutes off of I-75.  Your private vacation home has two bedrooms, two bathrooms, a complete kitchen and a deluxe screened lanai with views of a large marsh area where you can watch the wading birds, turtles and occassional deer enjoying their own tropical paradise.

The great prizes don’t stop with the silent auction though.  Sonya, Angela and my mom Barb have been busy gathering items for the raffle too.  Lucky winners will be drawn to win some great experiences including:

So, if you are in the Atlanta area, and you would like to come out to Champps on Saturday evening for some excellent food (compliments of our host), hanging out with some really genuinely good people, and supporting my cancer recovery by bidding on our silent auction items or buying raffle tickets, we would love to have you.  Anyone is welcome and tickets are $20 per adult and $5 for kids.  All guests will receive a Livestrong wristband from the Lance Armstrong Foundation.  And live entertainment will be provided by Lee Gamble who will play acoustic guitar and perform songs from the 70’s through today.  Please RSVP to Sonya at  simonsez11@msn.com.  Can’t wait to see you on Saturday.

In other news from my life…I am finally feeling well enough to live normal days.  Up until yesterday, I was still really weak from my last chemotherapy treatment.  Anyone who ever said Hodgkins Lymphoma is one of the “good” cancers to get, never heard of my stubborn case.  I went into Emory on Monday morning to get my daily shot of Neupogen and my bloodwork (which had not been run in over 5 days), showed critically low levels of all relevent measures, white blood cells, red blood cells, hematocrit, platelets, etc.  So, instead of the 30 minute appointment I had gone in for, I was detained literally all day at the hospital to receive blood and platelet transfusions.  It was a little alarming to be unexpectedly told I needed a blood transfusion right then and there, but the good news is that my excessive fatigue and weakness is a direct result of the low cell counts.  So, the new blood I received is working to make me a little stronger, a little faster.  I was just informed that I will get more transfusions on Wednesday morning, plus I am going in to have my central line placed in a short surgical procedure.   I still cannot taste anything.  All food tastes about the same, very bland and dry.  This is from the damage the chemo causes to nerves in my tongue and mouth.  Hopefully that will only last a few more days.

VTEPA – For those who are curious

BEFORE READING the following post, please take note of the following information.  It is now August 8, 2011 and I originally wrote this post 13 months ago on July 8, 2010.  I am still alive now and I feel great!  The first paragraph of the original post contains a lot of statistics that I cannot backup with any direct citations.  They are just bits and pieces of information I have picked up in talking to staff and other patients at Emory about their own experiences, and from the very limited information available online regarding VTEPA chemotherapy.

Have you ever wondered what VTEPA chemotherapy would be like?  No, probably not.  Here are a few interesting facts about this regimen.  It was developed by the Bone Marrow Transplant team of physicians, oncologists, hematologists and super brains at Emory University and Winship Cancer Institute.  In one of its first trials, it was so strong that it killed two of the 16 people it was used on.  Out of the 300+ bone marrow transplant patients that Emory facilitates each year, this drug regimen is still only used about once per month.  And they tell me that approximately half of the patients who receive it, have to be re-admitted to the hospital within a few days after discharge because of the intense side effects.  Now, considering all that, I think I am doing pretty well.  For starters, I am writing this, so it has not killed me.  And I am at home three days after discharge, and while I still feel mere moments from throwing up at any time, I have not needed to get re-admitted.

Don’t get me wrong though, this was serious chemo.  This was payback for something I did in another life that was very very bad.  I don’t know what it was, but I certainly hope the score is settled now.  I started feeling bad when I woke up Sunday morning.  As of Saturday, I was still leaving my hospital room and going for walks outside and trying to be productive with my time.  Sunday, I got up, brushed my teeth, and went back to bed.  And I stayed there, nearly all day.  Monday was more of the same.  I even told Angela not to come visit and to pass the message to my parents.  I did not want to see anybody or talk to anybody or do anything.  Tuesday was much of the same although I was finally at home.  Wednesday I got to spend a little bit of time pretending to be a normal person, but it was only pretending.  I spent a few hours in my new recliner Wednesday afternoon.  By the way, thank you to everyone who contributed to make that happen.  My mom has worked really hard pulling it all together and I am really looking forward to using it.  I could not get totally comfortable in it yesterday because of my stomach.  Lying flat out in bed is the only place that I can really count on for comfort right now.  I suppose it is telling of the whole situation that if a big soft cushy recliner can’t make me comfortable, I must be in a bad way.  There is a big basket of cards right next to it along with some other gifts that I have not delved into yet.  I am waiting until I am a bit more conscious of what is going on.  Now would have been a good time, but nobody else is here.

The frustrating part is that the symptoms and side effects come in waves and are  not predictable.  One moment, I will think I am starting to feel okay, so I climb out of bed, and then within 4 or 5 steps I am clutching at the wall because I am so dizzy.  And I know I am supposed to consume some protein to help with the fatigue and I am really trying to eat, but everything makes me want to throw up.  Last night, I threw up while trying to put a pill in my mouth.  It had not even crossed my lips yet, but my body knew that combination of 1.) Open the mouth, 2.) Pick something up with the left hand, 3.) Raise said thing toward the open mouth.  And my whole body reacted.  My throat closed up, I gagged, and ran off to the bathroom where I lost what little chicken soup I had managed to get down an hour before.  Not fair.  How am I supposed to build any strength back with my body not cooperating.  It knows it is full of hideous toxins and it wants them out.  That is obviously job number one right now.  It’s like a really bad hangover that lasts for days, and days, and days.  But it is amazing that the body is smart enough to know that it has to get rid of these nasty platinum and metal based toxins and chemicals before it can focus on getting nourishment from real food and real stimuli.  So, I will just keep helping it along by flushing with water and gatorade…and sleeping.

Update from Angela

Dan has been feeling pretty bad over the past few days, so I wanted to jump on his blog and send everyone an update (warning, this will be a more graphic and emotional post than he would normally write).  I picked him up from Emory hospital this morning and he has been sleeping for most of the day. He was admitted to the hospital on Thursday and completed 5 days of inpatient VTEPA chemotherapy. I know that he explained why the chemo regimen was changed in a previous post, so I will not go into that, but I can tell you that it is pretty intense. Since Sunday he has been really weak, unable to hold down solid food (or anything) and really tired. Yesterday he said that he didn’t want to have any visitors because he just wanted to sleep all day. When I picked him up this morning, he still had no eaten anything (since Sunday) and had been extremely nauseated. Today we were able to convince him to eat a little bit of chicken noodle soup that his mom made and to take a little walk around the cul-de-sac. In the hospital, the nurses want the chemo and BMT patients to do 21 laps (1 mile) around the floor, so we wanted to keep that going at home as well. One lap around our cul-de-sac is about the same distance as the hospital floor lap. He was able to do 3 laps before he got really tired and needed to sit down.

Dominic was SOOO happy that Dan came home today! He really missed his daddy and it was really painful to see my little guy be so sad. I took Dominic to visit Dan in the hospital on Friday. Dan wasn’t going to get chemo until later in the day, so he could leave the hospital for a short time to visit with us. Dominic cannot go up to the BMT floor, so we met Dan in the lobby of the hospital. We sat there talking while Dominic showed his daddy how the new handcuffs that Papa bought him worked. Dominic took turns arresting us and seemed to have an okay time. Then we walked to the building next to the hospital and had a little lunch in the Emory school cafeteria (believe it or not, it is way healthier than the crap they try to pass off as food in the hospital). We then took a little walk around the campus and then it was time to walk Dan back to the hospital. As we walked through the hospital, Dominic was asking Dan a lot of questions about when he will will see him again, why he has to stay in the hospital, why he can’t visit him in his room, when he will feel better and how many days until he has to come back to the hospital (2 days or 10 days?) while I walked behind them, trying hard not to completely lose it. This is the hardest part of this for me. I hate watching Dan suffer through this, but at least we can rationalize and manage the stress involved. My amazing little Dominic is 3 going on 30. He is so curious, and already in his young life, he understands how unfair and cruel life can be sometimes. Yesterday we called Dan on the phone while I was driving and I put the phone on speakerphone and handed it to Dominic. As soon as he started talking I could hear his little voice shaking and I looked in the rearview mirror to see him put his sad face in his hands and wipe away tears while trying not to let on to anyone that he was crying. I was heartbroken. Don’t get me wrong… Dominic is 3, he cries all the time… in the typical toddler way because he doesn’t want to eat dinner, because he wants to stay up later… whatever, but this was different, it wasn’t the cry I normally hear, I didn’t hear it at all, he was trying so hard to be strong, but he was just so sad and really missed his daddy.  Dominic idolizes Dan… at any given moment he will say things like… “my dad can fix anything” or “my dad is really strong” or “some day I will be big like my daddy”. Fortunately, Dan’s illness hasn’t changed that one perception one bit. That boy is amazing, we should all take life lessons from 3 year olds. Today, Dominic tried very hard to be patient and not wake up his daddy, but as soon as he knew Dan was awake, Dominic was right by his side asking if he felt better and when he could play with him.

Okay, now on to a lighter subject… Thank you to all of the incredible people who have offered to help us in one way or another. I know that the prayers and good energy are helpful. It is frustrating that we have been fighting this battle for 18 months now… but thankfully we have amazing people in our lives to support us. Dan’s parents came down at the beginning of June and are staying with us through August so that they can help us out around the house, help to take care of Dominic and of course, assist Dan with the many hospital visits, appointments and needs that come with being a cancer patient. They are the real reason why things are still in control and haven’t spiraled into a chaotic state. I know it isn’t easy for them to be far from home for an extended length of time, especially as their daughter is enjoying her first pregnancy (Congrats Laura and Ray!). So, in case I haven’t said it, we really appreciate you Barb and Mondo!

We also have other wonderful friends, family, neighbors, colleagues and vendors who have offered support or asked how they can help us. Typically this question frustrates me a little, not because I don’t appreciate the help, but because I can never think of anything when they ask. Fortunately, a few people have recently taken the initiative to help us by reaching out to others on our behalf. Dan’s parents have raised money from friends and family in order to buy Dan a very nice recliner that he can relax in during recovery from chemotherapy. They also asked that everyone send in funny cards so that Dan can sit in the recliner and enjoy reading cards that make him laugh and remind him how much we all love him.

Then, our friend Sonya asked to host a special event for Dan to raise money to help pay for his medical expenses and to show him how much we care about him before he goes in for the bone marrow transplant in August. Initially I was conflicted about this event because I know that there are people who could benefit from a fundraiser more than us. I am not in denial about our medical expenses.. they are certainly a major stresser right now, but I am also very thankful to have the physical  ability to work, as well as the flexibility in our jobs to focus on Dan if I need to. This is the double-edged sword of owning a business… you have flexibility on when you can take time off, but then again, if you don’t work, you don’t get paid. Anyway, it is an amazing gift that she has offered to us because it will enable me to stay focused on Dan, allow him the time to rest and recover without being stressed about how to put food on the table, and hopefully take away a little of the financial burden that the medical expenses have created. Dan should be feeling pretty good by then, so it will be a great time to see everyone. Here are the details of the event:

Date and Time:  Saturday, July 17th – 6-10 PM

Place:  Champp’s Restaurant – 7955 North Point Parkway, Alpharetta, GA

Cost:  $30 per person or $50 per couple, $5 for kids


Hope to see you there!

I Need To Write A Letter

This will be just a short post.  I was putting Dominic to bed tonight and I told him that I won’t see him starting in the morning, I would not see him for 5 days because I will be in the hospital.  His face twisted up and he started crying a little and said, “But I’m really going to miss you.”  He knows exactly how to make me melt.  He is also very aware that I am sick and that I need to go to the doctor a lot.  As if parenting was not hard enough, parenting while fighting cancer and trying to make the disease understandable yet not scary to him his a challenge I never thought I would be facing.  I talk to him about my cancer and about the treatments and we play a game where he has to find my band aids when I come home from the doctors office.  Sometimes he goes with me and always asks the nurses for a pair of exam gloves.

Then he mentioned something that made me marvel at how well that little three year old mind listens, no matter how often I think he is daydreaming about fire trucks, cartoons and playtime.  Two weeks ago, when I was preparing to be checked into the hospital for chemotherapy, I was explaining to him that kids are not allowed to come onto the floor where I stay to visit anyone.  He declared that practice to be not nice and made me promise to tell the people at the hospital that it is not nice to make kids stay away.  I vaguely remember telling him something about how I should write a letter to the boss of the hospital and tell him it is not nice to keep kids away.

Tonight, in the midst of his sadness about learning I will be gone again, he stopped and asked, “Did you write that letter yet?”  I had no idea what he was talking about at first and asked him which letter I was supposed to write and he got a little more upset and said, “The letter to the hospital to tell them they should let kids come in.”  All I could do was hug him.  He is such a good little boy.  He is why I am going to win.

What Happens When ICE Chemotherapy Does Not Work

Today’s agenda included a meeting with Dr. Langston.  If I have not explained before, Dr. Langston is the boss, or the quarterback leading the team toward defeat of my cancer.  I don’t see her often, but she is behind everything that happens.  Meetings with her happen when there are decisions to be made, or major news to deliver.  Last week, I spent two days at the hospital in a series of tests they call the Stem Cell Transplant Evaluation.  The purpose of the evaluation was to take a status check of how my body is physically standing up to the chemotherapy, and to plot the dates and schedule for all the steps that will make up the rest of my treatment plan.

Part of that evaluation was a PET scan whose purpose was to evaluate how effective the ICE chemotherapy had been in its goal of shrinking the tumor.  I reported last week that it has shrunk by 1 cm in length and width.  Unfortunately, this was not enough to satisfy Dr. Langston.  She was looking and hoping for a bigger change.  So, with one more round of chemo remaining before we start collecting stem cells, she has suggested turning up the intensity again to a stronger chemotherapy regimen called VTEPA.  I have done a little bit of research on what this cocktail consists of, but the names of the drugs are getting more complex, and the available information is written in medical speak.  What I do know, is that VTEPA was invented at Emory University, by a team of hematologist/oncologists which included Dr. Langston.  In lay terms, it seems to be a more aggressive and stronger version of ICE.  Instead of 3 days in the hospital I will spend 5 days there, and she has warned me to expect about 5 days of recovery time.  She also told me to expect a more aggressive round of side effects including mouth sores, more nausea, more fatigue and one of their research papers I found online mentioned that some patients had experienced fevers and a form of pneumonia.  I should be starting all that fun on Thursday morning.

The goal of all this, besides getting accepted into a gang after this beating, is to shrink the tumor.  Right now, it is still about 8.5 cm long by 2.6 cm wide (about the size of a normal cell phone), and the doctor feels like that is to big of an area to radiate.  The risk in radiating a large tumor is that more healthy tissue and healthy Dan gets zapped.  There are many long term effects of radiation, including the fact that it can cause cancer of its own later down the line.  And the scary part is that the radiologist has explained to me that the effects of radiation exposure do not dissipate over time, they can accumulate and get worse as years and decades pile on.  I am grateful though that I did not get radiation treatment following the conclusion of my first dance with chemotherapy.  I am convinced that this cancer would have come back anyway…have I mentioned my whacked out theory that I actually have non-Hodgkins as well as Hodgkins Lymphoma.  Completely untested, unproven and not the suggestion or opinion of my doctors, just my own suspicion.  Anyway, I believe the tumor would have started growing again anyway, and I would have been doing all this treatment, including radiation this summer anyway.   So I am glad I did not get radiation for nothing, and then had to get it again this summer.  I am going to do it once and hopefully never ever, ever again.

Okay, that’s it about cancer treatment.  Some fun stuff now.  We have a wonderful neighbor named Sonya who has taken the lead in planning a fundraiser event for us.  She has been working with Angela to plan to the details and I don’t know everything yet, but I do know it will be at Champp’s at North Point Parkway in Alpharetta, and it will be on July 17.  I have heard something about a guitarist and some raffle/silent auction items.  Angela is working on an evite and if you would like to be added to the invitation list, please other comment here or contact Angela.  There was a time when I would have thought it was strange and unnecessary for someone to raise funds for my family, but I am past that point and willing to embrace humility and the will of good friends.  I don’t hide much from this blog, so I will say that we have incurred significant medical bills.  While we do have health insurance, a percentage of our annual healthcare bills become our own personal responsibility, and the rest is paid by the insurance company.  In 2009 and again in 2010, we will (actually we already have), reached the annual maximum out of pocket expense level under our plan.  That only means that the maximum has been billed.  Now comes the part where we have to figure out how to pay those bills.  We are still working on paying off the 2009 medical bills, so the collection agents for 2010 will just have to get in line.  And of course, any assistance will be a major help.

Other good news…Dominic started his first swimming lessons yesterday and by the end of the 30 minutes, the coach had taught him to put his head completely under water and touch the bottom of the pool with his feet while blowing bubbles out his mouth.  Then, the coach got him to jump off the diving board, into the deep end.  Of course the coach was right there to catch him.  He loved every minute of it and is acting like a little fish.  His next lesson is on Wednesday.

Cancer Is Hard Work – Second round of ICE chemotherapy and recovery time

Dominic and Dan in the hammock on Fathers Day weekend 2010

Okay , so I am probably not totally looking like cancer is hard work in this photo.  At first glance, one might think, it’s Fathers Day weekend, the sun is shining, he’s lounging in a hammock with his little boy, what worries does he have.  Okay, first thing out of place is that my signature super thick mop top is gone.  It was making a disgusting mess and just had to go, even after cutting it really short, it was still gross just falling out and getting in my mouth and eyes all the time, so before I left the hospital last week, out came the razor and off went the stubble.  Next thing out of place, part of the reason we are outside is that the A/C went out in our house this weekend and it often felt cooler in the shade out in the yard than it did in the stuffiness of the house.  Don’t worry, all is fixed now, and the very first ‘Home Improvement’ category blog post has been inspired.  Stay tuned.  Third problem, I felt like shit at this moment.  There is really no other phrase that can so quickly and accurately sum up the collection of ick and blah that was going through me.  But, that is what this post is about, so only stick around if you want to read the gory details.  Remember, I write for two groups here, one is the people who know me and are concerned about what is happening to me throughout this treatment.  That group is probably not as interested in the details that are about to follow.  The other group I write for is the collective group of people who will find this blog tomorrow, next month or five years from now as they are panicking over a weekend having just learned they have Lymphoma and trying to get some sort of reality check of what they are in for in the coming months of treatment.  Here it is readers.

I checked into Emory on Monday morning June 14.  My counts were good, so they processed me right through to the hospital where I would stay inpatient for three days to get ICE chemotherapy.  I was in my room and unpacked by 11:00 AM, so naturally the chemo got started flowing right away at…8:30 PM.  Don’t worry though, there was plenty of protocol to go through in those nine and a half hours.  I went for a walk on the Emory campus, checked my email a lot, met Dr. Kaufman who would be in charge of the floor all week, had a conversation with the nurses station crew about what I do for a living, watched some CNN, got weighed, went to dinner with my Mom, Dad and Dominic and probably had my blood pressure checked three times (it should have been rising with all the delay, but I don’t sweat little stuff like that).  Anyway, you get the point.  Nothing really happened, it just took the pharmacy that long to get the drugs mixed.  And I was only getting one bag that night!  Etoposide comes in, gets hung on the pump and away we go.  10:30 promptly, it’s all over.  There was a little excitement that night around 2AM when the night nurse came in to do a blood draw from my port for their ultra important middle of the night blood cell counts and she could not get blood out out of the port.

Okay, I will intentionally digress here for a moment, again for the sake of those who just got a port or are about to get one, or better yet, are considering getting one.  Let’s explain how a port works.  It is a two way valve completely embedded under the skin.  Most of the time, I don’t even notice it there (takes a direct punch from my three year old to remind me that I have it, and even that barely hurts anymore).  The oncology nurses (be very cautious allowing anyone but an oncology nurse access you), access the port by sticking it with a device that has a needle on one end – that goes in the port, and a clear medical tube with a threaded valve on the other end.  That threaded valve comes with all kinds of snap-on tools the nurses will find.  They can attach it to the chemo bag, or to a syringe of saline to flush the port, or to a syringe of other medication ordered for you, or even draw blood out of it.  They refer to this as blood return and it’s very important in the world of medical ports.  The nurses are always checking for return.  This is their way of knowing that fluids are flowing in AND out of your vein at their beck and call.  If you are newly diagnosed and considering the decision to get one, I highly recommend it.  I was against it at first, not wanting to implant a DEVICE in myself, but it makes things so much easier.

But not on this night.  Not at 2 AM after I have been soundly sleeping for several hours.  Normally, she could have come in, drawn that blood and I would not have even noticed, but she could not get blood return because the port had clogged.  Like at home, plumbing only backs up in the middle of the night when you need to call the $200 per hour emergency plumber right.  So she pumps away on this thing for about 15 minutes.  More and more lights are being turned on as she is growing more frustrated and mumbling things to herself.  This is my least favorite nurse I have met at Emory so far.  She is not friendly and only works midnights.  There is a theory among oncology nurses that they can physically coax a clogged port into working my making the patient move around, but it has never worked on me, but I think I was to sleepy to mention that.  She is asking me to put my arms above my head, to roll over, to cough really hard, to do a Tarzan scream…then she goes to get another nurse who goes through the same steps to no effect.  And finally, they bring out the equivalent of human drano.  The cause of a clogged port is usually a small amount of blood stuck and dried in the plastic tubing portion, which is why they think they can shake it loose, but I must have extra sticky dried blood because it never works.  They shoot a syringe full of this stuff that dissolves and thins blood and leave me for fifteen minutes to let it work.  Just enough time to drift back into a sound sleep………….BANG then they are back again, lights on, hands on and working the syringe.  This time there is good blood return and my sample is successfully collected for the lab.

Tuesday, nothing happened.

Tuesday night, again around 8:30, they bring in more drugs.  From here on, things get more serious.  The Etoposide drips again, then the Carboplatin, and then the 24 hours of Ifosfomide.  And by Wednesday morning, I am feeling drowsy and my sense of taste is quickly leaving the building.  The feeling is strange.  I sense that something is happening in my chest because sometimes I feel that there is an icy (no pun intended to the ICE chemo) presence in my chest during chemo.  I felt that even last year when it was called ABVD.  For the most part, my stay in the hospital was pretty simple.  Mom, Dad and Dominic came to visit again on Wednesday afternoon and I got to spend a little time with them in the lobby of the hospital because children are not allowed on the cancer floors.  And I got discharged by noon on Thursday.  All was uneventful, but I was feeling really tired.  I napped a bit on Thursday afternoon, but I am pretty sure I ate a decent dinner Thursday night.

Friday is when my troubles began.  I woke up at 6:15AM with a horrible headache.  A splitting, aching monster of a headache I have never experienced before.  I had an appointment at the hospital for my Neulasta shot which Dad drove me to and we rode in silence.  I was also feeling very nauseous and focuses all my energies on not throwing up during the 40 minute ride to the hospital.  Somehow, the infusion room was more empty than I have ever seen it and I was in and out of there in about 10 minutes and back into the car for another 40 minute ride.  I was not so lucky this time and had the throw up about 5 minutes into the ride.  And that was pretty much how the rest of the day would go.  The doctors prescribed OxyCodone for the headache because I can’t have any regular pain medication that could mask a fever, and they also claimed I might be dehydrated.  Probably, chemo does make you pee a lot, like every hour for four or five hours straight.  So, I spent the rest of the day trying to get the oxycodone and water to stick to my system, but I could not stop throwing up.  It just kept coming and coming and coming.  I don’t know how, because I definitely was expelling far more than I could take in.  I mostly tried to sleep through this misery.  The headache never subsided and I actually had it straight through to Saturday morning.  That was the first time the oxycodone did its thing on my pain and let me get some relief.

Honestly, most of the weekend is a blur.  Between the vomiting, the headache that made me not even want to open my eyes, the aches and pains that kept me in bed and the nausea threatening vomit anytime I had a thought about food, I didn’t eat, I could barely drink and just existed for 48 hours.  Saturday, I was starting to feel a little better and offered to the family that on Sunday my goal was to appear more like a normal person than a sick person.  I might have succeeded, but the AC went out, the internet went out and some weird sewer gas smell started coming out of one of our bathrooms and all three of those things were putting everyone on edge.

Today, was a much better today.  I ate three normal meals, I am hydrating as much as possible.  Angela even made a delicious iced tea from steeped green tea, fresh lemons, mint grown in our garden and sweetened it with Agave Nectar.  She is a good lady for me.  I worked today, got a new lead, got the AC fixed, internet fixed and I think the sewer gas fixed itself.

Well, there is probably nobody left reading.  I can tell this isn’t terribly interesting and I know I just want to finish it because I am hammering away at the keys trying to reach the end of the report.  Oh…there it is.

BP Boycotting is Ineffective and Mis-Guided

Before you start slamming me with comments that BP is the most evil villain since the mutation of the Reed-Sternberg Cell (the little bugger that signifies a person has developed Hodgkins Lymphoma), let me say that I am not about to defend BP or claim that they don’t need to do everything and more to correct the disaster in the Gulf for both the environment and the people and businesses who have been harmed.  That is not what this is about.  The point I want to make is that boycotting BP gas stations  is completely ineffective at expressing rage toward the problem, and probably even makes the problem worse.

Why would I say this?  There are many reasons, but lets start with the fact that BP does not own gas stations.  There are approximately 11,500 BP, Arco and Amoco fuel stations in the United States, but nearly all of them are owned by local independent franchisers, real true, American small business owners.  They buy fuel from a regional distributor of automobile fuel, who gets their truckloads of fuel from refineries.  Here is a quick synopsis of how the supply of fuel flows from the gulf, or the arctic or wherever, into your Camry.  An oil exploration and mining firm (like BP, Exxon or Shell) mines the crude oil out of the earth and they take it to a refinery.  Refining companies buy crude from a variety of suppliers and mix it all together during the refining process to produce a variety of products from lubricants to gasoline.  That is the first time BP supplied crude gets mixed into the general supply of gasoline.

Next, refineries near the primary production site pump the gasoline through shared pipelines into various consumer markets.  All the refineries share the same pipelines and gas mixes freely in those lines.  The U.S. Energy Information Administration, a government agency, admits that the EIA, “cannot definitively say where gasoline at a given station originated since EIA does not collect data on the source of the gasoline sold at retail outlets.”

From the local distribution points, that melting pot of gasolines is transferred to trucks for delivery to your local service station.  In that last step, right before being loaded into the underground tank, most branded gas stations add a small amount of additive to the gas to “brand” it as Chevron Techron, Shell V-Power, BP Ultimate, etc.  So, with the exception of the little additive and engine cleaner that some stations add as a marketing tool, the gas you get at BP, could have been mined by Chevron, and the gas you buy at Costco, could have been mined by BP.  They make their revenue when they sell crude oil, and when they refine that substance into a usable product, not when you pump it into your car.

On the other hand, that small business owner who entered into a marketing contract with BP when he opened his doors, has a razor thin margin on fuel sales.  Fuel is a commodity and with all fuel stations buying from the same place, price depends more on your contract and volume with distributors than the name on your roadside sign.  The profit center for a filling station is inside.  That business owner knows you will need gas…some of you need it every few days…and he hopes that when you stop to get your gas that you also need a Coke, a lottery ticket, a coffee and a bag of chips.   Try out this math.   Fountain drinks are made by combing syrup from a box, with a shot of CO2 and a healthy bit of tap water at the dispensing machine.  Wholesale cost on that box of syrup will run approximately $35-$40 and will yield 160 – 200 cups of soda.  That is up to a 400% return on investment on that box of syrup.  Your local gas station owner REALLY wants you to buy a Coke every time you stop for gas.

Here are some other facts about BP.  According to their 2009 Annual Report, they earned $24.8 Billion from their Exploration and Production of crude oil (97.1% of total revenue), and another $743 Million in refining production (2.9% of revenue).  A revenue line item called Other Businesses and Corporate reported revenue of -$2.32 Billion.  That is a negative.  Whole other business divisions running at a loss.  I could not find details of what those businesses are, but it doesn’t matter.  The point is that 97% of their hugely profitable enterprise is in getting the crude oil out of the earth and turning it into something that can be used in commerce.  And besides gasoline for personal cars, BP crude oil finds it way into lubricants for machinery, petroleum that allows production of innumerable plastic products (should we also boycott plastic? – not me, I’m in the hospital this week!), hydraulic oil, cleaning products, corrosion prevention, aircraft fuel, marine fuel, and who knows what else!

So, by boycotting BP gas stations, you are definitely hurting the small business owner of that station, but probably not sending any message to BP.  However, when you find yourself in need of gas for your car, and you drive past a BP in search of another station, you are definitely burning more gasoline to get to that other station, where you have just as much chance of consuming BP mined petroleum as you did at the station with the BP sign.   And, by selecting another gas station, you are not necessarily moving onto supporing a more socially or environmentally responsible explorer.  For a concise review of the environmental, political and social injustices inflicted by other large oil companies, take a look at this article from Newsweek.

Which brings me to my second major point.  This disaster is on the shoulders of BP, no doubt about it.  But in my opinion it could have happend to any other oil exploration firm drilling in the gulf.  I think it is less a problem of any oversights or failures of BP to plan for disaster, and more a function of the fact that accidents will eventually happen to everyone and when they happen at a depth of 5,000 feet below sea level, where engineers can’t just get up close to have a look, take measurements, install equipment easily and move quickly we will find ourselves at a loss for what to do.  We are not meant to be down there.  Nothing functional is supposed to be down there.  It is just to extreme an environment.

We have made a lot of progress toward our collective awareness of the need to find and implement methods of reducing our impact on the earth, but this disaster should be a major indicator of how much farther we have to go.  As long as continue to live lives that REQUIRE and DEMAND consumption of over 100 million gallons of oil every single day, we cannot fault the companies who make their livelihood supplying it to us.  We also drink millions of gallons of coffee each day, but nobody criticizes the farmers who clear jungle and rainforest trees and plants to make room for planting more coffee plants.  As long as Americans keep increasing the size of the order for gasoline and coffee each month, the suppliers of those goods will keep digging into the earth looking for ways to fulfill those orders.  Remember your Economics 101 class.  If suppliers cannot expand and are left with the same quantity of supply, but demand and orders keep increasing, those suppliers will raise their price.

I say, stop wasting time trying to find a gas station other than a BP, and start spending that energy figuring out how to spend less time in your car.  Combine trips if you can, walk or ride a bike, look for ways to carpool (even if it takes a little sacrifice…it’s worth it), and don’t you dare drive from one end of the strip mall to the other.