Hospice Patient and Its Misconceptions

For those of you out there who I haven't been able to reach out to recently, things have been pretty hectic in the Love/Olafson household due to my health.  A series of infections led me to become one of the latest in a long line of cancer patients to become a hospice patient. If you are like me, you may not even know what in the world hospice means exactly so here is a dictionary definition:

a. a health care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family typically refraining from taking extraordinary measures to prolong life.

b. a similar program of care and support for the terminally ill at home.

I fall into category b of that definition.  There are many misconceptions though that come with the word hospice and the largest is probably that people instantly think of death.  I am not dying yet.  Just had a pretty tough week that led MaryEllen and I to re-think some of our options.  One of those options was taking a break from the rigors of chemotherapy and start taking advantage of the benefits of hospice.

(Garrett says he is too lazy to finish this post so this is MaryEllen picking up where he left off!)

We headed into the hospital in the first place because Garrett was feeling weaker and having hard time breathing.  After ten days receiving multiple blood transfusions and antibiotics for pneumonia and staph infections, Garrett is feeling better, but still has some shortness of breath.  We made our escape last Monday after learning about all the services hospice could offer and making a plan with their team to keep G safe and comfortable at home.  Waiting for us at home on our planned return day was an oxygen system, hospital bed and scheduled visits from hospice nurse to support me, Garrett and our families.  Hospice does not provide curative treatments, but they manage symptoms and are available to counsel us at all hours of every day.  Some people with terminal illnesses do get stronger and live longer that expected with the great care of hospice and can return to cancer treatments when they choose, this is what Garrett hopes to do.

We are very happy to be home and to know that we don't have to go back to the hospital because we have such great resources here!   

Ramblings For the Week

It's finally Friday, not that it really matters but I am really glad to see this week go. This has been a tough week, mentally and emotionally for pretty much everyone I have talked to lately.

Physically, I am still struggling to adjust to this stupid deafness in my right ear. Not only can I not hear but it just feels like the right side of my face is just clogged up, kind of like a giant cold in my sinuses but there isn't any cold. I don't know if it's from the increased dosage of steroids that my doctor had me on or what it is but its annoying. Then to top it off I chipped a stupid tooth which has me paranoid that a) that tooth is going to fall out and b) the rest of my teeth are going to start falling out. As MaryEllen wrote previously, one of the drugs I am on (zometta) tend to has a bad effect on teeth and jaw bones, etc.

The newest issue that has popped up is that my leg strength has decreased to the point where I cannot get out of a chair without assistance from someone. This started slowly when I was having a couple of infections where I just started losing strength all over. Well at this same time is when the hearing went away and the doctor increased the steroid dosage. We had no idea that a steroid of all things would cause me to lose muscle strength but when at chemo on wednesday, my primary oncologist found out my current steroid dosage and said it is way too much and is definitely causing decreased strength.

Dexamethasone isn't a drug you can just cut cold turkey so I have to take the next few weeks and slowly get off this drug with high hopes that strength starts coming back. It is very disconcerting to basically be bed ridden while home alone because you are afraid if you go anywhere else you might sit down (or better yet fall) and not be able to get up. Its very tough mentally to always have this on my mind. You take it for granted being able to do everyday things like going out the back steps and coming right back inside until you find yourself on your back waiting for someone to get home and help you up (theoretical scenario of course).

Medically, everything else went decent this week. I had what was I think my fourth treatment of gemcitabine on wednesday which went well. We got to meet with Dr. Ye for the first time in a couple of weeks and actually get some questions and concerns hammered out. One thing that was decided by MaryEllen and I was that we want to take a break from zometta, which is a bone strengthening drug that I get a monthly IV for but upon researching we came across many cases where it has very adverse effects on the mouth and jaw so with a chipped tooth and all I just want to take a break from that and try to eliminate another source of frustration. Otherwise, all the blood levels from my labs were promising. Red cells are staying high for how far away we are from the last transfusion and platelets which have been in the tank were actually up a bit although I did spend a couple of hours at the hospital yesterday getting a platelet transfusion.

Anyway, there's the current edition of the wild ride known as my life. I guess a lot of that sounded really negative and depressing but it really was just a tough week that I don't expect to continue. For one, ITS FOOTBALL SEASON!!! That alone makes me look forward to every weekend. Huskies have a huge game against Nebraska tomorrow. Not really expecting a win, just hoping for a solid performance and improvement. Right.

Chemo #4 + Platelets and sudden deafness! oy!

Last week Garrett had his 4th dose of gemcitabine and platlets fell again so we boosted them last Friday with a platelet transfusion and got more Neumega shots over the weekend.  This week we get off from chemo (yay!)  but we were so put off by the stand in doctor last week that we didn't get to talk about the new and perplexing symptoms bothering Garrett.  So we will go in this week to see his usual oncologist to catch him up and get on with finding answers. 

Over a week ago Garrett woke up from a nap with no hearing in his right ear... no pain or other symptoms.  The on-call doc during his blood transfusion the next day looked at it and referred him to an ear specialist who we went to see last Wednesday.  They tested his hearing and saw no physical signs of trouble from the outside, but found very little usable hearing in the right ear. If it is not related to his cancer or cancer treatments the hearing could recover over the next few months aided by steroids Garrett already takes for radiation damage  (when not related to any other ailment one-eared deafness like this is known as sudden hearing loss). We scheduled a head MRI scan for next week to check on the physical condition around the inner ear and nerves.  If all looks well there we can only wait and hope that the hearing returns on its own over time.

In the last few weeks Garrett also noticed a chip in one of his teeth.  Some of the cancer treatments (especially Zometa) have the potential to weaken teeth so we'll go soon to get this tooth smoothed out and see what options they might have for strengthening the rest of his teeth.  We'll aslo consider stopping Zometa for good since his teeth are pretty important for getting food down and keeping his weight up!  Late night muffins and Starbucks ice cream have been contributing to his weight creeping back up and holding steady.

We've got lots of new challenges to take on these days, hopefully more answers and less questions ahead!

Chemo #3 + Transfusion time

Garrett had low-ish red blood cells and platelets making him feel tired this week even though he is feeling recovered from the infections and eating enough to gain some weight.  They went ahead with a dose of chemo, bone strengthening drug and neumega shot yesterday, but he has to check in to the hospital early tomorrow morning to get a transfusion to boost those red cells and platelets.  It will be another long one because outpatient infusion is fully booked this week (more patients sent to the hospital possibly due to new lower Medicaid reimbursement rates) so the hospital has to admit him as an inpatient.  :(  Just the process of checking in and out adds several hours to the transfusion time!  Hopefully Garrett will be able to sleep at the hospital while all the paper work gets done and I will head in to work for the day while he is there.

We were glad to have last week doctor free though and spent most of the time relaxing around the house and eating good food!

Chemo #2 + very low platelet counts

Although Garrett has been feeling better every day since the first dose of gemcitabine as his antibiotics take hold, he developed a rash this week that had no symptoms other than small purple pinpoint bruises on his arm and abdomen.  They are in fact tiny bruises that show up when your platelet counts (blood cells that help clotting) are low, called thrombocytopenia.  Platelets have occasionally dropped from chemo before, but this last chemo dose got him unusually low while the other blood counts (red and white) were strong!  For whatever reason gemcitabine seems to be extra hard on platelets so we started today an injection called Neumega to boost the bone marrow's production, but it can take three weeks to raise counts so we'll call the hospital tomorrow to see when they can fit us in for an outpatient platelet transfusion (takes a fraction of the time it takes to get red blood cell transfusion!). Then we stop by our doctor's office the next three days for the same Neumega shot.  Next week we have off from chemo, but we'll have to keep an eye on blood counts and take it easy enjoying the sun we have planned here! 

Here's some recent relaxation in good weather (not from this cloudy week!) hopefully we'll be doing more of this over the weekend!

Dinner and a movie!

While Garrett is on the mend, I had a wonderful day turning 28 years old!  We've been partying while Tommy is visiting us and last night we all three made it out to Garrett's first in-theater movie in years... I can't even remember the last movie we saw in the theater... maybe it was before his diagnosis in 2006!  We saw The Other Guys this time and thought it was pretty funny. Good times.

On the topic of mending Garrett... we did get a call last Friday with results of the skin culture and started on an oral antibiotic and topical antibiotic cream to fight an infection going on, but luckiy it was not MRSA this time!

Infections

Cancer patients usually are at greater risk for infection because some chemotherapy drugs, cancers in bone marrow and radiation treatments cause neutropinia - low white blood cell counts - that means fewer immune system fighters.  Luckily during Garrett's adria treatments his white cell count remained strong.  We try not to let infection risks keep us from spending time with friends and family, especially when  his counts are so strong, but instead we try to remember the common sense ways to reduce spreading bacteria and viruses - hand washing and sanitizers, covering coughs and not sharing food...  ways that everyone can behave to avoid the cold and flu season!  Amazingly, Garrett does not seem to catch much even when I have something, but when he does it is usually a doozy or multiple issues compounding his symptoms.

The last time we dealt with infection was December 2009 when Garrett was very low on red blood cells and had to be hospitalized for three days.  At the hospital his skin ulcer was cultured and it came back with two strains of bacteria, one of them (we found out much later) was methicillin resistant staphylococcus aureus (MRSA) which has been discussed in the media lately for spreading in hospitals.  Although it is a tough bacteria that is resistant to some antibiotics and disinfectants, it can live on our skin or in our nasal passage without causing any trouble for years even.  When someone is neutropinic and/or has an open wound the bacteria can get in and cause real trouble.  Luckily hand washing is one of the most effective ways to not share the bug.  In December Garrett got several days in a row of Vancomycin, a powerful antibiotic that is used when bacteria is found resistant to others.  This cleared up Garrett's symptoms, along with blood transfusions, got him back on his feet. 

During our inpatient transfusion last Friday we learned more about MRSA and how nurses are supposed to wear disposable gowns and gloves when in a patients room with a history of MRSA...  some nurses did, some didn't...  and in all the times we've been in the hospital for transfusions since December this was the first time they tried to address it.  On the 3rd floor where cancer patients check-in it should be a high priority since many are neutropenic, but the night shift wasn't so concerned this time.  I followed up with the infection control department and they gave us a lot of information about getting cultures, washing hands and giving feedback to hospital staff on how to better educate patients like us.

When we discussed Garrett's current symptoms with his doctor this Wednesday he took a new culture of his skin ulcer and saw signs of thrush (a fungus) in his throat.  With a prescription to treat the throat and waiting to hear results of the skin culture, Garrett should start feeling much better and be able to eat and drink without the discomfort he has had the last few weeks.  Hopefully that will get us back on track, gaining weight, feeling good. 

Also, we got a call with the echo results - his heart looks as good as ever!

Chemo #1 Gemcitabine + inpatient transfusion

Over the last few weeks Garrett’s energy was diminishing, his appetite along with it. A sore throat led him to believe it was a virus, but when he started feeling winded walking to the kitchen we figured his blood counts were down. We got in last Friday to see a doc and have blood drawn and sure enough his red blood cells and platelets were low enough to need a blood transfusion. Although we’d had good blood counts the previous week, it seemed like the cold just brought him down faster than we expected. After trying to get an outpatient transfusion appointment with no luck, Garrett agreed to check-in to the hospital that night and get it over with. We went straight over at 5pm and didn’t get done with the transfusion until 5am!  It was a very long night with several quirky night nurses and no sleep.

After being pumped up with new blood, Garrett still had a sore throat which kept him from enjoying drinks and food again this week, argh!  Today our oncologist selected a new chemotherapy that our insurance had already approved, so we went ahead with the first treatment of gemcitabine and a bag of fluid to combat dehydration. He will get a low dose once a week for two weeks, then have one week off. Most of the side effects listed for gemcitabine (aka gemzar) happen when you are getting a higher dose; Garrett should only feel some of them mildly, if any. It is supposed to be as easy or easier on his body compared to adria!

Echocardiogram results were not in, but that should be a good sign because any irregularities would have been immediately relayed to our doctor.

Chemo #13 + Echocardiogram

Last week Garrett had another great blood count result, gained weight (!), got a dose of adria and zometta (bone strengthener) and scheduled the echocardiogram. The echo is also called cardiac ultrasound. It will check on the strength of Garrett's heart to be sure he is healthy enough for another dose or two of adria. I am looking forward to the echo because I get to sit off to the side watching the images and hear the swoosh of Garrett's heart pumping blood, very cool stuff to me!

While Garrett was finishing up his chemo last week I took a little walk around the medical park and their super green retention pond. The weather here has been keeping up with summer and we deserve it after such a cold and rainy spring!

Homemade crab dip, yum

Delicious date at Hearthfire!

Last Friday we made it out to my favorite local fare, Anthony’s Hearthfire Grill. At the last peninsula, on the very southern point of the puget sound, between East Bay and West Bay in Olympia, Hearthfire has a nice twist on Anthony’s well known northwest cuisine and it’s a place Garrett and I can reliably enjoy! It is a bit fancy, but the view and food are worth it to me. We had great seafood and good company as you can see, Garrett didn't let one bite of crab dip go to waste :)

Chemo #12 and concluding hyperbaric for now

This past Wednesday Garrett had impressive blood counts, hemoglobin up at 9.0 and shockingly high white blood cells, which is a continued sign of chemo affecting the bone marrow cancer and a boost from his blood transfusion a few weeks ago. Since the numbers were so strong he went ahead with another chemo dose marking the third to last appointment where adriamycin will be used to fight his cancer. Our usual oncologist was out of the office this week, but we hope next time we will start talking about the next drug up. Garrett has been eating often the last week or so, but was only mildly rewarded for his efforts by maintaining weight this time. We hope for gain in upcoming weeks.

After two weeks of making the daily commute to Tacoma for hyperbaric oxygen therapy Garrett decided he was at his limit. We’ve put further sessions on hold until he feels mentally and physically ready to tolerate more. The daily routine was wearing him down day by day, but since deciding to suspend he has had much energy to work on eating multiple times a day and adding activity as he is comfortable to do like our recumbent bicycle with full back support. Putting more effort into these behaviors will no doubt help him feel well and tolerate continued chemotherapy!  He has already been feeling better making these changes to his routine.

We’re finally feeling summer time heat here in the pacific northwest, but Garrett is lucky to have air conditioning at home and in the new travel van! His body doesn’t regulate temperature well so having a/c available at all times makes the change in weather bearable. Olive on the other hand is basking in the sun, loving every minute! We drove the van down to Centralia on Thursday, taking all the pretty country back roads to get there, for the grand opening of the Centralia Deli & BBQ a new sister to the Chehalis Deli!!! We had a great dinner with Garrett’s parents and hope the Deli family and staff had a good practice run for their public opening night tomorrow!  Good luck!

Patriot

Just in time for the 4th, Olive's US jersey arrived in the mail! We don't usually dress her up, but Garrett said this custom jersey was just too perfect to pass up!

We had a great steak dinner grilled by Garrett's dad last night and watched Seattle's 4th show on tv while our neighborhood was booming late into the night despite a local ban on fireworks. After the first hour or so of darkness the dogs calmed down and tolerated the remainder of the explosions. Hope everyone out there had a great independence day!

Blue

Well, our world cup game didn't go as we'd like, Ghana’s slide tackles and two goals won them a place in the next round. I’m happy for Africa to still have a team in there to root for, but Garrett might be done with this World Cup completely. It was fun while it lasted, in the end unfortunately a downer this weekend.

Friday we had a long day starting at 7:30am checking in to the hospital outpatient infusion center for a blood transfusion. As much as his blood counts have been rising, it is still not enough to avoid transfusions all together, but spreading them 5-6 weeks apart instead of 2-3 weeks is much healthier. The hyperbaric oxygen therapy will make the red blood cells Garrett does have work harder too which usually helps anemic people further delay transfusions.

Washington had some blue skies and sunshine this weekend, but we were still feeling under the weather. Garrett’s been sore in the shoulders and back since starting the hyperbaric treatments and trying to eat and drink more to up calories, but finding it hard to get things down. And little Olive got a hitch in her getalong this morning and couldn’t get comfortable. If only half a low dose aspirin could perk Garrett up like it does for Olive. Hopefully next week will be less painful for all of us!

We did have some decent homemade seafood and vegetable tempura for dinner and we're stocked up on Garrett's favorite dessert... mochi ice cream!

World CUpdate!!!

Here we are for anyone who has been following on the morning of the start of the knockout phase. Group play is over and there are no more round robin formats where you get 3 points for winning, 1 for tying, etc. Starting this morning with the Uruguay vs. South Korea game, it is now win or go home. No more ties!!!

There are 16 teams left in the field with our Patriot boys set up at a better than average shot at making a final four run. We play my other favorite team Ghana this morning at around 11:00 our time. This is going to be a tough matchup considering the size and extreme speed that Ghana brings to the table but the US is a much more highly skilled team. When it comes down to putting the ball in the net, we have that ability with 4 or 5 guys while Ghana has trouble finishing.

Should we beat Ghana, which will be very bittersweet for me, we will face the winner of the South Korea vs. Uruguay match that is played before our match this morning. This is thought to be one of the weaker matches of the knockout round, with neither country being a traditional power. Should we be fortunate enough to get to that game let alone win, that would put us pretty much in the Final Four and looking up at the big boys like Brazil, Spain, Portugal, etc. (Notice no Italy or France).

Anyway, thanks for dealing with my soccer updates. This has been so fun for me to keep track of and actually keep my mind on something other than continuous health updates and issues. What do you guys think of the tournament from here on out? Can we do it? Can we pull a couple of huge upsets like we did last summer in the Confederation Cup in South Africa where we almost knocked of Brazil in the Final for our first major tournament victory ever? It all starts today.

Chemo #11 - wrapping up adriamycin

Late last year when we took a trip to Scottsdale, Arizona research doctors at Tgen (Translational Genomics Research Institute) took a sample of bone marrow from Garrett’s hip bone and looked at the cells for genetic markers which can indicate which chemo drugs might work best against Garrett’s cancer. Tgen has matched some genetic mutations to some chemo drugs giving cancer patients a better chance at getting the right drug the first time instead of just looking at treatment success from other people with the same type of cancer. This is especially helpful information for Garrett’s oncology team because his neuroendocrine carcinoma diagnosis is vague and no other case is exactly like Garrett’s.  In reality, all cancer patients are unique and the same type of cancer can respond to the same drugs differently in each person's body.  The ability to look at each person as an individual and customize treatment is a great step forward in cancer treatments that are shorter, easier and more effective.

Adriamycin, the chemotherapy Garrett currently gets, was one of the drugs identified by Tgen and has been helpful in decreasing cancer in his bone marrow thus escalating his body’s ability to make healthy blood cells. But it is a tough drug that is hard on the heart, so limits are set for the total amount of adria that is safe to take. After three more doses of adria (up to #14) Garrett will have had the cumulative dose our doctor feels is safe for his heart. Because Garrett still has probably some living cancer cells in his body we will need to start a new chemo drug at the conclusion of this one to keep suppressing new growth. We do not know yet what that next chemo drug will be. Our oncologist will be returning to the report made by Tgen to look at other drugs matching Garrett’s genetic markers and then recommend to us which one to try next. Having the report is also a good argument for petitioning insurance coverage for drugs not normally used for his type of cancer. As soon as we know more about the next drug up, we will share the info!

One week of hyperbaric oxygen therapy is now complete with no significant changes in the way Garrett feels or how his skin tumor is healing (we expect to see/feel changes after 2-3 weeks of treatment, with total sessions up to 4-8 weeks). Other than boring Garrett to tears for two hours, it’s not a terrible drive to Tacoma on days other than Friday. We just purchased a beautiful 15 year old conversion van in good shape with a sofa-bed, comfy captains chairs, tv and dvd player and a few other handy amenities for road trips! Our regular cars aren’t very kind to Garrett’s spine so the commute is made much less painful with this acquisition and it gives me a great spot to hang out in while he is in the treatment tube! We were very lucky to find this van in time to drive it to these every afternoon appointments and we’re looking forward to taking it on a few fun trips this summer too.

Here is my co-pilot waiting for Garrett to get out of the hyperbaric tube!

You Tell Me Where the Foul Is?

Was it where Michael Bradley or Jozy Altidore or Clint Dempsey were being put in headlocks and being simultaneously wrestled to the ground? Or was it where Maurice Edu had his greatest career moment stolen from him? This is so ridiculous, I usually have stupid conspiracy theories about the team I am rooting for always getting screwed in one way or another but this is making me think I am not so crazy.

Then this morning the Ghana "Black Stars" get 65 minutes worth of 11 on 10 soccer after the Australian player got a red card for a hand ball in the box and they can't get a single goal to get the win instead of a tie.

I have loved watching almost all of the World Cup games so far but this can be a seriously frustrating sport, especially for the American minded sports fan who just does not understand how you can run for 90 straight minutes and end up in a tie.

Hyperbaric Oxygen Therapy #1

Garrett made it through many questions, precautions and almost 2 hours of hyperbaric oxygen therapy today!  We won't know for a while how much this treatment is going to help, but for now Garrett is willing to tolerate it everyday and after a few weeks we might start to see signs of healing where there has not been any for many many months. Check out my older posts here on hyperbaric for more info on how it works and other resources, if you are interested in technical info.  There are many rules for patients to follow such as wearing no lotion or hair products, drinking no caffeine or carbonation, changing into all cotton scrubs... etc. for safety and effectiveness of the treatment.  But after all the inconvenience, Garrett lays in a clear plastic tube and can watch tv/movies on a screen above the tube.  Once in there he said he was comfortable.

Tomorrow we go again, our regular appointment will be at the end of the day.

Big big day

I said last week it was about time we got back to work and tomorrow is when it really begins. We’ll be at the hyperbaric medicine department early tomorrow afternoon to get checked-in for a precautionary EKG and chest x-ray before Garrett tests out the hyperbaric chamber for the first time. Crossing all my fingers and toes that the treatment is comfortable enough for him and that time goes swiftly. If things go well tomorrow we will have afternoon hyperbaric treatments every weekday for at least four weeks, we'll let you all know how it goes.

Thanks to all who walked the track, stayed up all night, stopped by to say hello, sent in donations or thought good things for our Relay for Life team, Garrett’s Sneaky Ticklers! We can’t thank Garrett’s devoted friends enough for raising thousands of dollars for the American Cancer Society in his name, especially our team captain, Jason! Very lucky to have great friends and family around.

I’ve been playing soccer my whole life, but Garrett is keeping way better track of the World Cup and professional soccer these days! All I can say is GO USA!

WORLD CUP!!!

This post is totally random and has nothing to do with cancer, which is a relief, but the 2010 World Cup starts tomorrow. For those who don't follow soccer, the World Cup is pretty much the Olympics of soccer. It only occurs every 4 years and not every country gets to take part. The countries taking part spend the 4 years between tournaments qualifying in their regions.

Our US team is strong this time around but is not quite yet on the level of the big boys like Germany, England, Italy, Spain, etc. We have some solid players who will scrap as good as they can to get out of our group (US, England, Algeria and Slovenia). The top two teams from the Group C advance to the playoff rounds. The group round is a round robin format where you play each team.

The US's top players I would say are midfielders Landon Donovan and Clint Dempsey as well as goalkeeper Tim Howard. All currently or have recently played in the English Premiere League (EPL), arguably the toughest club soccer league in the world. Up and comers to look out for are strikers Jozy Altidore, another EPL guy and Ensign Buddle who plays for the LA Galaxy of the MLS. Buddle is on fire with the Galaxy this year and unexpectedly made the US roster strictly because of his run to start his season. I hope the dude gets rewarded with starting, but that is yet to be seen. My personal favorite player is Oguchi Onyewu, our best defender. Onyewu will be very limited though as he is coming off of a torn ACL earlier this year.

Our first game is Saturday at 10:30 am against traditional world power England. This will be our toughest game by far. Although England is in some turmoil and not as powerful as a few months ago. Their two previous captains are no longer captains. The first one, which almost everyone is familiar with is David Beckham, who tore up his knee while playing with AC Milan and will not be able to play in the World Cup. The other previous captain was John Terry, who was stripped of his captainship due to having an affair with a fellow team member, who ended up leaving the team because of the affair. What a classy dude. England does still have a lot of talent though, led by its unstoppable striker, Wayne Rooney. I have watched a lot of the EPL this year and Rooney might be the best scorer I have ever seen.

The US should be able to lose to England, but still beat Algeria and Slovakia to advance from Group C to the elimination round.

My other favorite team is Ghana. This stems from the 2006 World Cup, where Jason, Toby, Scott, Brad and I were at Dante's bar watching the up and coming country play against the US and frankly ran circles around us. The group of us friends pretty much adopted the "Black Stars", not being racist just their nickname, as our favorite team. Earlier this year, Scott was lucky enough to go to Ghana for a close friends wedding and brought us all back jerseys from the top players on the Ghana national team. So if you get a chance, root on Ghana to have a good Cup. They are having to overcome not having a couple of their star players due to injury and are a dark horse but I will be cheering for them.

So for anybody out there remotely interested in soccer, who do you have winning the World Cup this year?

Chemo #10 + weight gain

Thanks to everyone who fed Garrett over the last two weeks, he gained 3 pounds!!! That's a big deal. Since his weight has been falling steadily for many months, every positive number is a relief. All his blood counts looked fine today and he got another dose of chemotherapy.

Good times

Garrett finished up his twenty-eighth year of life by enjoying time with family and lifelong friends during a fabulous vacation. It’s about time we get back to work, but I wanted to let you all know what a great time we’ve had on this break and how proud I am of Garrett for getting out and having fun even when his body doesn’t want to cooperate. We took in a great baseball game in person, a co-birthday bbq, dinners out, dinners in, catching up with friends and lots of time relaxing in or around the Jacuzzi. Sounds like easy stuff to do on vacation, but after all it has been through, Garrett’s body has a tough time just getting out of bed many days. Doing all these fun things is quite an accomplishment and I appreciate all the effort he puts in just to get out and have good times.

Another year calls and we’ll kick it off next Saturday at our annual Relay for Life fundraiser for the American Cancer Society. Thanks to all our friends and family who have made donations this year and in past years, if you haven’t checked it out yet our team is the 5th place raiser for our relay event and we’re really close to making our fundraising goal! Garrett’s body won’t let him do a lot of walking this year so if you are in Seattle and have time between 10am Saturday and 10am Sunday, come join us and walk a few laps on the track!

My Sister's Keeper

Written by Garrett, just too lazy to sign out of MaryEllen's account.

I know I am a year or two late on this movie coming out but we just watched it the other day while in Cali and I must say that I recommend this movie. I didn't think I was going to and thought it would kind of just patronize those with cancer but it actually did a good job showing not only what the disease does to the individual but also to the family and friends of those affected.

For those that aren't familiar "My Sister's Keeper" is a movie about a family with a teenage daughter that has had leukemia since she was a child. The parents at one point have what is basically a genetically engineered daughter that was used for things like bone marrow transplants and ultimately was intended to be used for a kidney transplant. The movie is basically about the physical, mental and moral issues that this family is going through. I know I have experienced a lot of the feelings they expressed the girl had throughout her ideal from sadness to guilt to joy. I don't want to ruin it for anyone intending to watch it so I will just say I thought it was a very well produced account of a cancer patients life. Sad, but very well done.

So basically, there is not really a point to this post, I just wanted to point out a good cancer related movie that I saw. For those that have seen it, I would love to know what you think.

Health Care Reform Summaries & Blogs

If you didn't already know, I believe health care reform is a good thing for all Americans' quality of life, including Garrett's and my own. But like most reform it is seriously complicated and has plenty of intrinsic flaws. If you have questions or fears about the changes the new law will bring when it goes into effect in 2014 (some of it sooner), there are now some legible summaries and fact sheets on the topic that can help us all to understand its strengths and weaknesses without political hype clouding fact.

Health care, like education, is something we all deserve to have access to. We will all pay for it of course, but I hope reform will be the first step toward more affordable care. If you want to know more check out these links and keep looking out for credible reports:

-Summary of the Patient Protection and Affordable Care Act (thankfully, only 13 pages long and in list form)

-Key changes to Medicare

-Impact on young adults

-An economists view on health reform, how other countries cover everyone & why mandating insurance makes the system more fair for people with diseases like aggressive cancers. Three great articles 1, 2 & 3

-Blog by a nonprofit health education organization

Chemo #9

Last Tuesday Garrett finished his 9th dose of Adriamycin chemotherapy. With blood counts on the rise we have good reason to believe this chemo is acting on the cancer in Garrett’s bone marrow and hopefully the tumors in the rest of his body. Even with rising blood counts, he needed a blood transfusion last Friday. Upon seeing Garrett’s lab results at the chemo appointment four days later, Tuesday, his doctor shouted “yahoo!” in the hallway before coming in the exam room to give Garrett the news… highest blood counts in months! The transfusion did its job well!

When we get back from vacation we’re planning to start the hyperbaric oxygen therapy that we had a consult on back in early April. The chemo alone does not seem to be helping his skin tumor to shrink or heal, so this is our next best idea to improve that condition and we hope the extra oxygen his entire body will acquire during the treatment will help him to feel good in general.

We're focusing on relaxation and calorie intake this week :)

Still on a Roll

After last weeks annoyance of seeing the doctor who was filling in for Dr. Ye, we finally got back to our normal routine, at our normal office, on our normal day. This is my 5th week out from my last blood transfusion and my red blood cell level (HGB for short) was still up at 6.4 and my platelets which is apparently why the fill in doctor last week delayed chemo had raised from 31,000 to 36,000.

This all of course confirmed my suspicions from last week that the other doctor was wrong in what he did and was just being way too cautious. I was even able to vent my frustrations to Dr. Ye on the issue and he actually agreed with me, not that that did any good but it just felt good that Dr. Ye felt the same way I did. The other reason the other doctor delayed chemo was because he wanted to discuss the possibility of trying another chemo drug. Turns out it is pretty much only approved by insurance companies for breast cancer patients and there is pretty much no way they would approve it for me. Thats a side story I wish I could complain about. There are dozens of drugs out there that would possibly work on me that will never be tried because insurance companies will not approve them just to be tested on a patient.

Anywho, we were able to go through with chemo yesterday and it was great to have the rational thinking Dr. Ye back. The awesome news though is that I don't even have to go in for the next blood transfusion until the end of next week and thats only because Dr. Ye wants to make sure I have my body in shape to have the best vacation down to California possible, not neccesarily because the blood levels are requiring it yet. This is going to make it 6 WEEKS between transfusions. If we can keep this up instead of the 3-4 weeks it has been the last couple of years, I also will have to worry less about the iron over load that has been a threat.

All in all, if we could just find out and treat this stupid vision problem I have everything would be great. My goal at this time is just to get back working on a somewhat normal basis and right not that is one of the only things holding me back. Everything else is going relatively well, which is a great feeling.

Annoyed in Olympia

So this post is just a vent for my annoying day. Today is my normal day of getting chemo every two weeks, but it turns out my doctors office just happened to schedule my appointment this time around on my normal doctors day off. The problem with this is that my case is so unique and complex that a doctor not familiar with my case can't just fill in and accurately tell me what I need to do. On chemo days Dr. Ye always has to take a look at my blood labs and make sure they are high enough to be able to do chemo. If they aren't high enough, we put chemo off and generally go over to the hospital for a blood transfusion.

Well the problem today was that this fill in doctor takes a look at the numbers for the labs and immediately thinks, these are too low, we need to get him right over to the hospital for a transfusion, no chemo this week, etc. Well this would be the case for a normal patient. I am NOT a normal patient. My normal lab numbers are generally something that a normal person would not be conscious with. For instance my hemoglobin level that I posted about last week was at 7.2. For my fourth week out from the last transfusion, this is an INCREDIBLE number. I don't know that I have been that high after four weeks in years. But this doctor not being familiar with my case, he sees that number and told MaryEllen and I that he would like to send us over for a transfusion.

I called all of this before hand when we were waiting for the doctor to come in. I even told the nurse taking my vitals that there was no reason for me to see a doctor unless it was Dr. Ye because they wouldn't understand my case and would not give accurate treatment. MaryEllen told me not to get worked up quite yet since we don't know what will happen. I knew better.

So basically I just calmly as I could told the doctor that he should probably go call Dr. Ye before he did anything else because he basically didn't know what the numbers he was looking at meant in regards to me. Surprise surprise he came back a couple minutes later basically with his tail between his legs having to admit that I was right and he was wrong.

I swear I wish I could just get my doctors license so I could control my treatment for days when my doctor is gone since this is not even the first time I have had to tell a person filling in that they are overreacting and I didn't need to do what they thought I did.

Moral of the story for those not familiar with the medical field, take control of your own care. You know your body better than any doctor ever could and don't just take a doctors word for things. If you feel something is wrong with what they are telling you, there probably is something wrong.

Thanks for letting me vent.

Hope Part 2

Garrett's Sneaky Ticklers Relay for Life team is hitting the track for 24 hours June 12-13 to support the American Cancer Society!  Garrett's name will be under the team member list soon, but you can go at any time and make a donation to one of us online (or print out a mail-in form) if you would like to help fund the type of cancer research that results in vaccine discoveries like Garrett posted earlier today! Donations to the American Cancer Society also fund preventative screening events & coverage, patient/survivor support services, family & caregiver support, educational programs and lobbying policy makers on behalf of cancer victims!


Dollars are appreciated, but also consider doing another great act instead like:


-Visit and/or walk with us in Seattle June 12-13!
-Share our story and online donation page with others
-Schedule cancer screenings for yourself this year
-Donate blood at your local blood bank or blood drive

Thank you for supporting us everyday, Garrett and I couldn't do all that we do without the love we get from all of you! 

New Hope

http://seattletimes.nwsource.com/html/localnews/2011734807_provenge30m.html

FINALLY! A cure for cancer. Not exactly what I need but a huge step in the right direction.

I haven't really researched the specifics of this drug or how it exactly works but the article claims it has been used for treating advanced tumors, which is basically what my cancer is. I know this is only for those afflicted with prostate cancer but just the fact that it is used in treating tumors gives me new hope that there are other drugs out there that may be in the FDA approval process or are going to be developed in the near future.

Now I know it is never good to get your hopes up too much but to me every cancer afflicted person should be ecstatic by the FDA's approval of this first ever vaccine for cancer. I can't even describe how amazing it would be to have a vaccine that would treat my tumors. No more chemo, no more radiation, etc.

Here's to hoping that the vaccine for whatever the heck I have is close to being developed.

Adding to the Last Post

I just wanted to add a quick note about MaryEllen's last post. She mentioned a bit about blood levels holding steady or even improving. I can't overstate how happy this makes me when we get the results from blood results and most notably the hemoglobin levels are good. A typical adult male has a hemoglobin (or red blood cell) level of 14-18 grams per decileter or blood. Well mine is obviously much lower due to my extreme anemia and is typically half that number at its best.

Well this last week, already exactly two weeks out from having my last transfusion, my hemoglobin level was measured at 7.7. Typically two weeks after a transfusion, this number has already dipped to the low 6's or upper 5's. The normal human being gets a blood transfusion when their levels are no lower than 6 or 7 but I am used to getting as low as the upper 4's, which quite honestly is dangerous territory. At these times, nurses usually look at me in awe and make some kind of comment about how am I still conscious.

Enough of the technical stuff though, the moral of this post is that a hemoglobin level of 7.7 at this point of time is amazing for me. It means the adriamycin is definitely doing something right. Since all this junk has been happening to me, I don't think I have had a level this high, especially while on chemo. To add on to that number, both my white cells and platelets were also at elevated levels.

So anyway I just wanted to share how something this simple, after getting a normal routine blood draw, made my week. Its exciting to know that something is happening through all this misery. There will always be hope, I just need to look hard for where it is coming from. There are times when I look back on the last 3.5 years and just am amazed that I am still alive when at one point I was given 3-6 months to live. Then there are days like Wednesday when I get some good news that actually gives me hope that I have a future.

Link on Blood Levels: http://www.medicinenet.com/hemoglobin/page2.htm

Chemo #7 + week review

The latest chain of doctor’s appointments in themselves have been tiring Garrett out, but we found out a few good things and all of Garrett’s symptoms have been holding steady or improving the last few weeks. Here is a summary of the last week or so:

- Images of Garrett’s eyes did not confirm that vision problems are from radiation damage alone, they only confirmed there is pressure on the optic nerve from an unknown source. A head CT scan last week thankfully showed no large/new growth in the skull, but we still do not have a clear reason for his vision disturbances.

- A follow up eye exam showed bleeding at the back of both eyes (seen at the first eye doctor appointment) has decreased! Garrett has not perceived any change in his vision so far, it seems to be staying about the same with some good days and some bad days. We’ll do another exam again in two weeks just to monitor changes.

- We checked back in with our radiation oncologist who is publishing Garrett’s hyperthermia treatments and took another photo of his skin tumor. He also weighed in on hyperbaric oxygen therapy (recommends it) and the vision problems (radiation damage and tumor created bone changes could be the cause).

- Hyperbaric treatments are still on the table to treat his skin tumor and maybe help his eyes heal, but Garrett has not committed to a start date for the treatment yet. It is a big time commitment, so he is not taking it lightly.

- At our chemo appointment yesterday Garrett had impressive blood counts, almost at normal levels! This is the third chemo round where his blood counts have shown some recovery and it continues to be a sign that the cancer is responding to the Adria chemotherapy.

- No appointments so far next week, which is probably just what we need… a week off!

Chemo #6 + many more events and appointments

Whew, we had an exciting busy week/weekend spending time with good friends and going to a beautiful wedding. But we also finished another dose of chemo, met with a doctor at the hyperbaric medicine department, had another blood transfusion and made the transition to a new insurance plan!

At our chemo appointment we saw Garrett's weight still holding up and some recovery in white blood cell and platelet counts. This may be a sign that the chemo is starting to kill cancer cells in his bone marrow and make room for some healthy bone marrow cells. We will probably keep on this chemo for many more months (maybe six, or more?) as long as Garrett is tolerating it and we keep seeing progress, albeit in small increments, such as this!

Although we had a consultation with the hyperbaric doctor last week, we still have questions to get answered. We have a follow up with our radiation oncologist this week who will likely have insight that will help us make an informed decision. Our main question is if the time intensive hyperbaric oxygen therapy helps heal the skin tumor/radiation damage, will it be a lasting solution or only a temporary one? This is hard to know for sure, but the chances of lasting healing may determine if the four hour travel/treatment every week day is worth it to Garrett.

I had a restful day today to recover from all the fun we had this weekend, but we get back to our normal-busy schedule tomorrow. Eye doctor and radiation oncologist follow ups this week. Hope the transfusion can keep his energy up and his appetite can keep him maintaining/gaining weight!

New hyper treatment: Hyperbaric Oxygen Therapy

Although our general course of treatment has been to kill cancer globally in Garrett’s body, the original tumor at the surface of his skin has been one of our choice targets. As I said before, destroying this tumor won’t stop other areas of growth, but it would be a symbolic victory and an improvement to our quality of daily life. The last targeted treatment, hyperthermia, had very few long term risks and offered the possibility of healing this chronic skin deterioration. Since ending that treatment we have not seen the tendency toward healing that we had hoped for, but we don’t know yet that it was a total failure. The changes that happened to this tumor during hyperthermia may still be a good sign, but our previous attempts at treating it with radiation may have gone too far and caused this persistent state of non-healing. Divers out there may be familiar with hyperbaric oxygen therapy (HBO) for decompression sickness, but it is also useful in promoting healing of chronic wounds such as bed sores, diabetic foot sores, and chronic radiation damage.

“Chronic radiation damage is called osteoradionecrosis when the bone is damaged and soft tissue radionecrosis if it is muscle, skin or internal organs which have been damaged by the radiation. Since the 1970’s, surgeons of the head and neck region have come to recognize the value of hyperbaric oxygen treatments in treating damage of the jaw bone due to radiation. Hyperbaric oxygen has had some of its most dramatic successes in treating or preventing damage to the jaw bone as a result of radiation treatments. It has now also been applied to damage of the brain, damage of muscle and other soft tissues of the face and throat, damage to the chest wall, abdomen and pelvis as a result of radiation treatment. Papers in medical journals also report success in treating damage to the bladder and intestines due to radiation. The high dose oxygen provided in the hyperbaric chamber is carried in the patient’s circulation to the site of injury to be available for repair of the damage done by the narrowing and scarring of the blood vessels. Each treatment typically takes one to two hours, and usually 30-40 daily treatments are needed for healing radiation damage.”

These 1-2 hour treatments involve breathing 100% oxygen (about 20% in normal air) in a pressurized chamber so that the oxygen levels in your blood stream reach 10-13 times normal levels. The increased oxygen level in the blood provides support to injured tissue to promote the growth of new blood vessels, purge toxins from the body and enhance the killing of bacteria. In some clinics you can watch TV while getting treatment or sleep, after our consultation at St. Joseph’s we will know better what Garrett’s experience may be like.

Interestingly, HBO is being tested in conjunction with some cancer treatments to heighten cancer cells sensitivity to radiation and chemotherapy and help prevent radionecrosis. It is also being tested out for brain repair after a stroke and body repair after sports injuries.  It seems like another good treatment option with low risks and a bright future for many ailments.

Chemo #5 up and up

At Garrett's chemo appointment this week we got several pieces of good news. One, Garrett’s blood counts were up. It hasn’t been long since his last blood transfusion, but some weeks he’s already feeling low, not this time. Two, he gained 3 lbs over the last two weeks! Adding some extra calories everyday seems to be sticking for the first time in many months. Three, our oncology team referred Garrett to the Hyperbaric Medicine department at St. Joseph’s in Tacoma to consult on the potential for a hyperbaric chamber to promote healing at the skin tumor which has not improved visibly since the end of hyperthermia treatments. We look forward to learning more about hyperbaric medicine and I’ll post more information on it after I do some research this weekend. In two weeks we will also get images of his eyes taken to better determine the source of vision troubles. New treatment options are always welcome, we hope for more good news on the horizon!

Here is Garrett hooked up in the chemo room at the end of this round of treatment.  It was a quiet day in the doctor's office and everything went smoothly.

Uneventfull Eye Doctor Visit

So today I had my much anticipated eye doctor appointment, but other than being told that I had 20/40 vision in my right eye (poor eye sight), we did not get any real answers to the problems that are keeping me from doing a lot of things, most notably working.

For those who don't know or know little about my vision problems, they started a couple of months ago when I was hospitalized for 3 days with really low blood levels. The timing may be a coincidence or not, we don't know. Basically though, the best analogy I can use of whats happening is you know that feeling you get when you accidentally look at the sun and how it feels when you look back away? It's like that but just randomly happens without having looked at any bright lights. I also have been having a lot of trouble just adjusting to different light levels, especially inside artificial light. The other issue is just having trouble reading and writing. I can barely see to even sign my name to endorse a check. Makes it sort of hard to work, especially as most of my job involves writing down numbers, drawing sketches and reading small print blueprints.

Anyway, back to the eye appointment results, the doctors only real results were that he saw some swelling or evidence of pressure against the optic nerve. I think he also said there was some evidence of optic nerve damage but I am not sure if thats exactly what he said. Basically, until he speaks with my oncologist who is familiar with my head tumor positions and is able to review my most recent head MRI, there is nothing he can really diagnose.

Personally from hearing him talk the little bit he was able to explain, I am guessing that it is possible that one of my tumors has either damaged the optic nerve previously, or one of the tumors is currently pushing against the optic nerve, causing the pressure. We just won't know much until he gets to review the MRI.

All in all, a disappointing visit. No real results, with the only probable results not being the best of scenarios. I guess I am just a bit frustrated to not know when or if this problem is going to get resolved. I really want to get back to work and be effective but as it is now its going to be really hard. I actually went to work twice this week for a few hours each day for the first time in 3 months. I basically wanted to check and see what I was capable of and the results weren't all that good. I was able to see better in general than I had anticipated, but it seemed like I was only able to do things at about half speed and the fatigue in my eyes hit fast.

So, I guess for now all I can do is keep the positive thoughts going and hope that when and if the eye doctor reviews the MRI that some good news comes our way. The problem is my next appointment isn't for another month, so it will be more of the waiting game for now.

Change is difficult

We have been on a pretty good roller coaster ride the last few weeks, but we learned so much about how our nation’s employer-based health insurance system works. (It’s top on my list, but I don’t blame you if you are just plain tired of hearing about health care reform, skip this paragraph if you need a break from it all.) We are both so lucky and grateful to have jobs with remarkably supportive employers, especially in this economy, but we see more clearly now how they are impacted by the rising cost of health care and can be penalized for employing those with chronic illnesses. Not only must employers absorb or pass on the rising cost of premiums, when coverage gets too expensive they must cut back benefits, increase employee deductibles or drop it all together. Rising premiums are exacerbated for small companies with group health insurance by the most unjust factor – experience rating. Based on the claims or cost of health services used by employees every year, premiums can rise dramatically for the whole group. It’s clear why we are so lucky, while the other half of employers with 3-9 employees offer no health insurance at all. And worst of all, when you lose your job (or have another change in life circumstance) in this system you also are burdened by losing your health insurance. Bah! Whose idea was this anyway?!

After some ups and downs shopping for potential group plans, we were presented an individual health insurance plan that works for us and keeps Garrett’s claims from affecting his employer’s experience record. While Garrett remains committed to working as much as he physically can, this also means he has a policy he can take with him if he ever has to leave his office. I am so glad that there was any health plan available to him and affordable for us. I wish every person had opportunities for continued coverage when they get disastrously sick, lose their job, want to start their own business, get a divorce or otherwise have life changes that should not preclude them from having health insurance.

Garrett and I carpooled to work this week which was a great accomplishment given his continued vision trouble and ongoing fatigue. No treatments this week, but we are looking forward to an appointment with the eye doctor tomorrow. It has been months since I’ve seen Garrett as giddy as he was today when the Huskies beat Marquette, he seriously did a celebration run through the whole house. Hope UW keeps it up on Saturday against New Mexico...

Refueled

Garrett's blood transfusion (2 red blood cell untis + platelets) went smoothly today, he's feeling tired tonight, but his energy might pick up this weekend.

Since I don't have anything else to post today, here is one of his crowd pleasing childhood photos :)

Health Care Frustrations

I know MaryEllen has blogged about this a couple of times but this post is by Garrett, the sick and emotional Garrett, maybe not the most rational Garrett. I usually would never get involved and waste peoples time by posting this but I have reached my boiling point. Recently my boss has basically had to go in search of new insurance for my company because of the jack in prices that our current insurance company who shall go nameless has given to my boss. Oh yeah, and the biggest issue with the rise in premiums is likely because of one employee, ME.

I have worked there about 6 years now, 3 of which I had never filed a single claim and hadn't seen a doctor for any reason for probably 10-15 years. Boy have I been a huge burden on the insurance company. Well we all know that 3 years ago I had a reversal in fortune and became unexpectedly sick. Great right, thats what insurance is for so when and if you get sick, you have someone to back you and make sure you don't go broke and homeless because you can't afford the astronomical cost of health coverage. I guess I misunderstand the meaning of insurance.

Well lately we have come to learn that my new claims history since becoming stricken with cancer is causing my boss to have to seek new insurance for the entire company because the current insurance company basically does not want to cover me specifically. So basically right now I feel like a giant burden on my boss and my company as a whole. It's horrible that I have to deal with this junk and feel like this on top of everything else I am going through.

There are tons of more details to this story that would take me 20 minutes and much boredom to type out but needless to say this has all opened my eyes to how big of criminals these insurance companies are. Like one of my good friends told me today, they know what they are doing to people like me and know what they are guilty of and are just trying to dehumanize everything. I am a case number, not a cancer patient.

I still don't believe Obama's ideas are what this country needs and I honestly don't know what the solution is but reform is what America needs. I know I sound like a liberal right now but there is no way we as Americans can allow these insurance companies to keep getting away with, excuse my language this bullshit. I have finally snapped and encourage everybody, whether Republican or Democrat to get involved and knowledgeable. I don't care if the solution is public coverage or privatized, it just CANNOT stay how it is right now.

Sorry for the rant, I have just been pretty emotional about this subject lately because how it is affecting me and a man who has been like a second father and an amazing mentor to me, my boss. It is not fair that he has to get jerked around and ripped off because of my health issues. So please just take a few minutes a day or so and keep up on the current events going on and get involved if you can.

Chemo #4

Another successful dose of chemo today. Garrett’s blood counts were low (he’s been feeling the usual low symptoms) but we went forward with chemo and scheduled a transfusion for this Thursday. Since things aren’t getting better with his vision, we got a recommendation for a local ophthalmologist who is a UW grad so he must be brilliant and cool, go dawgs. We will make an appointment with him next week and hope that he has some ideas for the cause and solution of Garrett’s blurry/light sensitive vision.

There is only one important time and that time is now

Despite your opinion on how this should be done, I want to ask you all to support some kind of change in our health care system sooner rather than later. If you are fortunate enough to work hard, earn your health insurance, access preventative medicine and annual cancer screenings and afford to pay your health care bills, very good for you, you are living the dream! We have been amazingly well supported through Garrett's employer based private insurance, but so many cancer patients and other sick Americans are not that lucky. We are forever grateful for the insurance coverage we have had so far, but built into the system are so many catches, inequities, inefficiencies and flat out disasters that it is not working to support our country's general health or especially those with catastrophic health conditions like cancer.

I will not claim that the proposal out there now is the magical answer to all our health care problems, but trying to do something better is long overdue and it is my wish that we try something new at this point. If it does not work and/or needs adjustments I will be speaking up about it again in the future, as we all should. But I believe the worst thing we can do now is wait longer, fight about it more and let cancer patients continue to reach their lifetime benefit limits, delay diagnosis or treatment, get denied and dropped, or go bankrupt paying for their own care. No matter how you feel about our government's current social assistance programs or the inclusion or exclusion of a government run health insurance option, this is a matter worth moving forward on. And then continuing forward, making changes to it as many times as necessary to improve the health and life of us all, especially those who don't have any choice in the matter of living with cancer.

A simple way to show your support is to sign the American Cancer Society Cancer Action Network's petition to congress. It simply says that you support taking action now, making forward progress without delay.

The week off... almost

Yesterday we had a follow up with our radiation oncologist. He wanted to see Garrett a few weeks after finishing hyperthermia and go over any symptoms lingering from radiation that we did to the skull a few months ago. Garrett has had ongoing issues with vision and headaches, then just this weekend I noticed two spots of hair loss each a few inches wide on the back of his head (in the exit path of the radiation beams). The hair loss is a clear radiation side effect, but with others we can never be exactly sure what is causing them since anemia, iron toxicity, chemo and the concussion could all be contributing factors.

Since what we assume are radiation symptoms have not been getting worse our doctor was not concerned by them and good news was the strangest of all the symptoms has been decreasing in frequency. That symptom is random short term tongue swelling/control that slurs speech, controlled by an area of the brain near to the skull tumor we radiated. Since its occurrence is decreasing our doctor thought the radiation probably did its job on the tumor and swelling around the treatment area is likely diminishing so that the speech trouble would eventually stop completely. The vision issue he was less sure about, if it is a side effect of radiation at all or if it will ever go away. Instead of sending Garrett for more uncomfortable head scans, he said to keep track of symptoms and come back if any one is increasing or becomes too bothersome. We appreciate his reasonable approach to every thing.

They took more photos of Garrett’s skin tumor to document the hyperthermia treatment progress, but we can’t see a big difference on the surface yet. We hope that bleeding is a part of the healthy tissue’s return because that has been an occasional problem over the last few weeks and we are so looking forward to the healing process. No chemo this week, but next week should be dose #4 and we hope that it too is doing a number on the cancer in all areas of his body. The low dose does seem to be catching up with Garrett a little, but maybe he is also getting closer to needing another blood transfusion.

The rest of this week, appointment free, is a little breather but will no doubt fly by as all good breaks in life do.

World Record Chemo Infusion

I was just sitting here this morning thinking about my chemo infusion that I received yesterday afternoon and how unbelievably smooth it went for the first time ever. After multiple frustrations on MaryEllen's part and having to rearrange multiple schedules, the nurses between the two offices that Dr. Ye uses during the week, finally determined that the only way we could see the doc this week was to travel to the old office we used to visit.

In December or November or when it was, Vista Oncology opened this nice, new state of the art office with bigger waiting rooms, bigger chemo suite, more overall rooms to see patients in and in general just more toys like flat screen tv's, etc. Well, we have seemed to notice that while the bells and whistles are nice, everything has been getting backed up and sometimes I get lost in all the hustle and bustle, sometimes spending up to 3 or so hours for an appointment that should realistically take half of that.

So anyway, this week we headed over to the old office which is still in function, it's just about twice the distance to drive from our house . Turns out though, what we thought was going to be a pain in the butt, turned into one of the smoothest appointments we have ever had. We got to the office, which is usually a packed waiting room to see two other people there. It took the nurse about 5 minutes to get to me and do vitals then stick us in a room to meet with the doc. After a brief meeting with him just to check how things are progressing, we went straight back to the chemo suite where Dr. Ye started my IV personally and we were on our way. The premeds were out in 5 minutes and the whole process was over in no time. It was just so refreshing.

Just goes to show that bigger doesn't mean better. The old office basically has one receptionist, a regular nurse taking vitals, a chemo infusion nurse and a nurse taking and running the blood results and Dr. Ye of course overseeing everything. In contrast the "new and improved" office has multiple nurses I have yet to meet, receptionists I haven't seen before and often people sitting at a desk not appearing to much other than busy work.

The only problem with this perfect scenario is that Dr. Ye only works out of the West Side office on Tuesdays and maybe one other day, otherwise he is just caught up in the madness of the new office. So I think I am going to try as hard as I can to make it on my planned chemo days to the office that seems to function.

It was a pleasant surprise yesterday to walk out of getting chemo and not being the least bit grumpy. I even went home and cooked a full meal for MaryEllen and myself, which isn't really something I have done in months, of course it didn't hurt that she was in a bad mood and I wanted to try to do something nice for her.

Overall though, round 3 down and promising ideas to make the future go a little smoother on chemo days.

The Bathroom Incident

So I haven't been really update on the blog for at least the last week or so, partially because of a lull treatment but I have also been out of commission for a few days. Last leek I had a little accident, that I have almost done a million times in my life but last week I actually accomplished it. I am sure I am not the only one to ever do this but have you ever been putting jeans on and just about tripped over your own feet? Like I said, I have almost done it a million times but last wednesday I actually did it.

I don't know if it was just being lazy, in a hurry or being weak from low blood levels but as I was getting ready to go to the hospital to get type and crossed for my transfusion the next day I bit it big time. It also just happened to happen in the worst place possible, in the bathroom. So what happened is as I was putting my jeans on I just simply tripped over my own feet when a foot got stuck in the jeans. Well being where I was in the bathroom, I did not have anything to catch myself and brace my fall. I ended up falling head and shoulder first into the bathtub. It was definitely the hardest I have ever hit my head and was just inches from the corner of the tub, which probably done even more damage. Lets just say it scared the living crap out of me and I thought I had done some serious damage. But, being the hard headed idiot that I am, I just went on my way to the hospital and didn't tell anyone until later, I think I was just in shock from it all.

Well, that night it started to hit me what I had potentially done. I had a massive headache the rest of the night even after multiple pain relievers and ice packs. Then I woke up in the middle of the night, throwing up multiple times. Basically all the symptoms of a pretty good concussion. The next day I began to slur my words. Its like I knew in my head exactly what I wanted to say but it just wouldn't come out like I intended. I think that was the most frustrating of it all was not being able to articulate what I wanted to say, it was the weirdest feeling.

So now that all the cobwebs have cleared and the after effects of the concussion have worn off, I feel pretty dumb looking back. I am really shocked that I did not do some real damage, I guess I have a harder head and shoulder than I thought I had. I am still pretty sore in the neck area kind of like a whiplash but it could have been worse. I guess that will teach me to put my pants standing up.

So yeah, that was my story for the week. I am glad to report for now that I am feeling better and back on the mend and am now concentrating on recovering from the adria treatment I had this afternoon. So far so good, I am just hoping that I don't get the extreme heartburn that have been getting the last couple of weeks.

All for now. Moral of the story I guess is don't take something for granted just because you have done it thousands of times before, you may not be able to do it the next time around (well that is if you are a clutz like me :) ).

What can we do?

As suspected, a blood transfusion (red blood cells) is in order this week. Some times the symptoms he feels from low blood counts go away right after the transfusion, other times he perks up a few days later. Either way, it is good to stay on top of his anemia and get transfusion before he gets too terribly low.

This is probably the first of many posts I will write on this topic, but it is a broad subject and a common question. The answer is different every week and for every one of you, but I will try to put a new post out there whenever things change for us. The question “is there anything we can do to help?” is so wonderful to be asked, but sometimes so hard to answer. Most of us have a hard time asking for help and just as hard a time accepting it when offered, Garrett and I are no different. But I will strive to ask for and accept help when we really need it because a lot of small things can really lift some of our burdens and hopefully empower all you givers out there too! Here are a few things to start out that you can do right now:

- Check yourself! Get annual exams including cancer screenings. Most cancers are very treatable (or preventable!) when they are caught early. The sooner you can face the issue, the less difficult the solution will be. If you do this one thing we (and the other people who love you) will not have to worry about you :) which is a great relief.

- Have health insurance and disability insurance. See below about contacting policy makers to improve affordability and access.

- Live a healthful life of moderation (easier said than done, I know!) be physically active most days, get outside in sunshine (without sun burns) or supplement vitamin D, eat fruits and vegetables everyday, weigh in a healthy range and find ways to be happy! No one food or life choice keeps us cancer free, but the sum of healthy habits seems to lower our risk of cancer.

-Contact policy makers about supporting comprehensive health care reform, cancer research funding and education/access to pain and palliative care services. Join the American Cancer Society Cancer Action Network and they will alert you about upcoming votes and facilitate communication to lawmakers.

- Donate money to your favorite health, cancer, or patient support nonprofit organization. Garrett’s friends organize a Relay for Life team every May to raise money for the American Cancer Society, my friends Tessa (and Becca and Kristine) raise and run for The Leukemia and Lymphoma Society and you probably know someone else who is involved and taking donations!

- Some organizations need your time and talents in addition to funds. The Pink Daisy Project arranges support like house cleaning, reduced cost childcare and grocery shopping and meal prep assistance for breast cancer patients, helping young mothers like our friend Ellen’s sister during tough treatments. Volunteer your skills, walk or run in a fundraising event yourself, call your senator… actions small and large will support our family and other families facing cancer.

That’s all for now, surely more to come! If you know other organizations doing good work, share them here and with everyone else you know!

The Engagement Anniversary and Story

So this post has nothing to do with cancer or chemo or any of that depressing stuff, just my views on Valentine's Day and the story of MaryEllen and my engagement.

First off, it's strange that I chose Valentine's Day to propose because I have always despised this made up "holiday". Why is there a holiday where a man is required to buy something expensive and do something nice for his partner? Sounds like every other day of the year to me. I don't need a random day out of the year to remind me to love my wife, I hope I show her that every other day of the year. Luckily I have a wife that I think feels the same way. We don't celebrate Valentine's Day other than sometimes getting each other cards but for those that don't know, today is the anniversary of the day I proposed to MaryEllen.

Anyway, enough on the anti-Valentine's Day rant. On February 14, 2007, I was still bed ridden from back surgery and thinking of what I could possibly do to make that day special. I couldn't walk at the time so there really weren't that many options. I had known for quite some time that I wanted to propose to MaryEllen, I just didn't know how or when, plus I had some major reservations to take on such a task when I really didn't know yet if I would ever be able to walk again. It's pretty tough to ask someone to marry you when you don't know if you will be able to provide for that person. But back to the story. I was on the internet like a usual day in that time and decided "What the hell, it's time to do this". I don't know why it was that day, maybe it was to make the day special for the rest of our lives or maybe it was just to get over my hatred for the holiday.

So, what I ended up doing was buying a promise ring so to speak online until I could physically get out and get the real thing. At the time, my Mom was living with us to take care of me so MaryEllen could remain working. So I had her run over to the mall and pick up the ring and a box of chocolate truffles. We ended up putting the ring in the box of truffles and I think I gave it to her with some flowers or something like that.

The plan was for MaryEllen to open the box of truffles and I would ask her if she would marry me, nothing too creative but it would get the job done. Well it turned out she just took the box of chocolates and kind of tossed it aside without opening. I was thinking crap, I don't just want to say open the darn box so I started asking what a truffle was acting like I didn't know. She responded by saying a certain kind of chocolate and still didn't get it. Finally after a couple more frustrating questions I asked her if I could try one so she would have to open the box. She was getting kind of annoyed to the point where I thought she was going to just throw the box at me, but alas she opened the box and saw the ring and got kind of choked up and I was finally able to propose.

Afterwards she will tell you she felt kind of bad for giving me a hard time about opening the box but all in all I am glad it happened how it did. If it would have went off how I had planned it would have been just another boring story of a proposal on Valentine's Day. But it turned out being really fitting to our relationship, kind of humorous yet very difficult at the same time. I never thought I was going to have to work so hard to get MaryEllen to open a box of chocolates.

So that's the story for those that didn't know the specifics.