6 Weeks Later (after Chemo)

Tuesday June 12, 2012

Hi everyone! So since my last post I have returned to work and attempted to jump back into life after about 5 months off. It has been suprisingly easy to get back into the work routine of early rising, catch the vanpool, work 8 hours, and return home. The main thing I'm noticing is that I have to really kick-start my brain to be able to keep up at work. Maybe it's a result of way too much TV watching on my leave!

Speaking of TV watching, is anyone besides me still in shock over the American Idol results? What about the Lakers??? I would LOVE to see the Thunder beat Miami!!! (See what I mean folks...definitely too much TV!)

Anyway, I had my first CT scan on Friday, and the good news is that the area of my ribs showed no signs of new growth which is a good thing as it looks like the chemo treatment worked. The bad news is that one of the previous tumors on my spine that they were watching has grown a bit and they want to treat it with radiation. This is MUCH preferable to chemo as it involves me going in for about 20 minutes each day for 5 days and get a low doseage of radiation pinpointed to the target area. I can deal with that! Thank God for these results, and thank all of you for your prayers!

The hardest part of returning to work has been coming to grips with my lack of hair! It is really funny to pass a co-worker in the hall that I haven't seen yet and watch the transformation from:
1. who is that guy?
2. wait, he looks familiar...
3. oh my God - that's Ron!! (usually accompanied by a hug...)

I have recently noticed some peach fuzz growing on my head and mustache area, so the hair regrowth process may be starting!

That's it for now - I'll check back in later!
Ron

Final Chemo Week!!

Well this is it folks - my last week of chemo treatments!!! Here is a brief overview of how I spent my last week:

Day 1: - Pho Soup lunch after chemo - Watched The 3 Stooges movie and laughed a lot!
Day 2: - Nothin special, but watched the Lakers beat Denver in Game 1 of playoffs.
Day 3: - Another Pho Soup lunch! (Indulgent? Yeah, but Cheryl twisted my arm - what could I say?)
Day 4: - LAST DAY OF CHEMO! So excited to be done with this. I think I should go to Disneyland or something...

So after today, I've got about 3 weeks of recovery and then back to work! I'm wondering what it will be like to return to work after a few months of being out. A little concerned that I will be able to get up in time and have enough energy to complete the workday. Honestly, I think I could get used to retirement, but my brother says I'm not financially ready yet!

In thinking over my experience, I am most overwhelmed by the amount of support and love I have received from my friends and family. This would have been a much tougher ordeal to handle without this support. I also want to thank my wife Cheryl for all of her love and support during this time. Not only did she have to be my personal chef and nutritional adviser, she had to put up with my intense mood swings and irritability! Also - one of the highlights of my medical leave was being pampered by each of my 3 daughters who came out to spend a week with me, cooking their favorite nutritional meals and just hangin' with dad. Also, thanks to my brother Norm and sister-in-law Peggy for being such gracious hosts and opening their home to me on my motorcycle trip up the coast.

My excitement about coming off chemo is a bit tampered with the thought that this might not be the last of these in my life, but my good friends have advised me not to focus on this but instead to have faith and hope for the future. We really never know what God or life has in store for us but it is our job to keep on going, keep up the faith, and just keep doing good in this world for as long as we can.

Thanks again to all my FaceBook friends who have followed this blog and supported me during this time. You are very appreciated and loved! Ron

Chemo Treatment 5 Complete!

So you may have noticed I went "dark" over the past few weeks with no blog entries. No major reason for this other than I think I was just trying to ignore it and maybe it would go away. It didn't, but I am at the end of session 5 (out of 6) and I'm at Starbucks on the way to the doctor to get disconnected from my evil chemo bag buddies!

This has no doubt been the easist week to get through as I came into the week prepared to proactively deal with the side effects. I also had some eye-opening observations about my chemo treatment as I encountered others who were going through this or knew someone going through it. I realized that I was actually getting off pretty easily on the treatment side effects. I heard stories of legs being bloated to the point of not being able to walk, extreme sensitivity of the skin, etc. My minor symptoms of slight nausea, clogged pipes (i.e. constipation) and canker sores no longer seemed like such a big burden to bear, and were all treatable.

Additionally, I have been overwhelmed with support from family and friends at church, work, etc. For example, the number of people who have stepped up and desired to play Words wth Friends with me, although I am severely handicapped with "chemo brain" which obviously makes it easy for them to beat me...right?? ;-)

Over the next few weeks, I will need to start preparing to enter back into society. Although this time off hasn't all been fun and games, I can't say that I didn't enjoy some of it. Coming up over the next few weeks are:
- (if the weather is good) a possible motorcycle trip up the coast to the Bay Area
- My daughter Jessica and her boyfriend Christian coming out to visit me
- A family concert in Wisconsin honoring Cheryl's mother Ellen who will be leaving Oconomowoc to go live near her daughter Linda in Indiana.

So I have a very full 5 weeks to get through the chemo treatments, have a little fun and family time, and then re-enter society and see what it will be like to work again!

Until next time...
Ron

Good Times!

February 29, 2012

So I'm now in chemo-week 3, which will mark my 1/2 way through this ordeal! However, I thought I would use this entry to document some moments over my 2 "off weeks" that can actually be classified as good times.

My good friend Scott Wilson graciously offered me to accompany him on his latest business trip to NY! I will jump at any chance to go see the girls, so I accepted the offer, although I was a bit concerned out my energy would hold up.We were there from Monday through Thursday, and my only low energy day was Wednesday. It was a fantastic trip and I had a lot of time to hang out with the girls. We ate at some amazing health restaurants such as:
- Bareburger (grass-fed beef with gluten-free buns!)
- Green Symphony (health foods and green juice)

Watching Hugo in 3D!

Playing Pool with the Gang

- Whole Food Buffet Meal

- Enjoying popcorn at the movies with Mr. Wilson

- Cruising the city with the Burrows Girls!

Additional good times included my first manicure (yeah - I admit it).

We got to the airport rather early and Scott talked me into getting a 10-minute manicure. I resisted at first but then gave in - and actally enjoyed it! My nails have never looked so good. Next step: pedicure!

So I'm now back at my 3rd chemo week, but just to show it's not all bad, here is a shot of me enjoying a complimentary foot massage at the clinic.

As a topping to these good times, Julia came out to visit me for chemo week! She has accompanied me to each of my chemo sessions and has cooked many gormet meals for me to enjoy. I am definitely getting spoiled!

Goals for the next couple of weeks:
- Finish taxes (yuck)
- Compose a blues song (possibly with chemo being the theme)
- Start the Artist's Way program (Author: Julia Cameron)

Love you all - thanks for following my journey and for all your supportive feedback!

Ron

Chemo Week 2...and Pho Soup

Friday February 10th,

By the title of this blog, many of you may believe that my sanity is slowly slipping away. This may indeed be true, but read on...

So Chemo Week 2 kicked my butt! Nausea, extreme tiredness, and all around feeling like poop! (Note - modified word from original draft...) If I initially had any thoughts of breezing through the treatment, those thoughts are definitely gone. On the other hand, so far it's not as bad as typically depicted in movies such as the Bucket List which show Jack Nicholson and Morgan Freeman frantically clinging to the commode - well, you get the picture!

I also found myself becoming very irritable and short-tempered, with very specific appetite desiires. Here are a couple lists for your enlightenment:

Food I do NOT want to eat but made to eat by my loving and knowledgeable wife:
- A fresh vegetable juice conconction with every imaginable grain, health powder, Goji berry, etc. etc. added to have the consistancy of a soup!
- Soups that contain not only every vegetable known to man, but with seaweed added!
- No less than 20 vitamin supplements.
- A gallon of water. (Ok this is an exaggeration, but I feel like a fish).

Food I want to eat:
- Pho Soup

For those of you that haven't experienced the joy of this Vietnamese soup sensation, stop reading this blog, look up Pho Soup on Google and find the nearest restaurant. It is very simple: a beef broth over rice noodles with thin strips of rare beef that cook right in the soup. Add garnishments of mint leaves, bean sprouts, and a killer red sauce to top off.

For some reason, even with an upset stomach, this is the most soothing food to me right now and has the ability to alter my mood to one of serinity and satisfaction. (Wait...this sounds a bit like bordering on addiction).

Anyway - enough of this diversion about food. One thing of note this week: after my "chemo-bag" disconnect on Friday (Liberation Day for me), I went out to see the musical "Man of La Mancha" with my good friend and adopted daughter, Jessica Wilson. I am not normally an emotional man (ask Cheryl)...but one of the strange side-effects of the chemo is a very heightened base of emotions. Although I tried my best to hide it, I cried like a baby during the grandiose and heroic proclamations of Don Quixote de La Manacha in To Dream the Impossible Dream, and proclaiming his undying love for the barmaid Aldonza, whom he only sees as beautiful, virtuous, someone to go into battle and die for, and whom he renamed "Dulcinea"!

Sorry if you were embarrassed Jessica!!!

Well, enough said in this blog. Looking forward to 2 chemo-free weeks. Will post if something else exciting happens such as I discover a new entree!

Love you all!

Ron

Chemo Brain!

Thursday, February 2nd.

What is Chemo Brain?
According to the American Cancer Society, Chemo Brain is:
- Forgetting things that they usually have no trouble recalling (memory lapses)
- Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
- Trouble remembering details like names, dates, and sometimes larger events
- Taking longer to finish things (disorganized, slower thinking and processing)
- Trouble remembering common words (unable to find the right words to finish a sentence)

So here are a few things that happened today:
- I went to the Mail Room to buy some movie tickets, and I couldn't for the life of me remember my Employee ID - the same one I've had for 8 years at the company.
- While leaving work, I went down to my motorcycle in the garage as usual, but this time I put my shoes (with special orthodics), new coat, and company iPad in a different saddlebag compartment than normal, and left for home. When I got home and opened the usual compartment, guess what - all these items were missing! My immediate response was to panic. I called Russell at work and confessed that I had left the iPad, shoes, and coat on the back of my motorcycle and could he go down to the garage and check if it fell off. Well he not only checked there, but walked about 1/2 mile down to Jamboree to check if it had fallen off! He called me with the sad news that alas, they were not there, nor were they in the company Lost and Found.

As I'm really dependent upon my orthodics, I immediately went to Runner's High and purchased another pair, all the way lamenting on the loss of my precious iPad, my ECCO shoes, and my new coat that Jenae bought me. Well, about 1 block from home, I had a flash of what I had really done, and was overjoyed to find all my stuff in the "other" saddlebag.

So after apologizing profusely to Russell, I realized that I was ready to take some time off work. This just confirms what MANY of my friends and co-workers have been advising me to do. Rather than trying to cope with the stress of undergoing therapy and continually trying to keep up at work, I think it's fair for both me and my job to take Leave of Absence.

I honestly don't know how I'm going to cope with all of the free time I will have, but I'm definitely going to start with creating a "Bucket List" and checking off all I can. I am anxious to see what God has in store for me over the next few months.

As always, I'll keep y'all posted.

Changes

Monday, January 30, 2012

So today I rode my motorcycle from work to the doctor's office in Newport Beach for my regular weekly checkup. I pulled into the parking lot, pulled off my helmet and as I typically do, fluffed up my hair from being pressed down by the helmet. What I saw was a veritable snowstorm of grey hair blowing away in the wind. I then proceded to pull a few handfulls of hair from my head. (I stopped...).

So it looks like I am really going to lose my hair. My guess is that within 3 or 4 days from now I will vaguely resemble Daddy Warbucks. That's ok - I can live with that for a while.
.
The good news is that my blood counts (which were very low for the white cell and platelet counts) were back up in a very healthy range. I attribute this to God, prayer, and this strange green juice that my wife makes me drink every morning, and that my dear friend Lauren Trickett brings by the house each week!

So as of right now, I seem to be in very good health, still able to eat Pho soup (my favorite), go to work, and ride my motorcycle. Life is good. I'm ready for chemo, round 2, starting next Monday!

End of Week 1 - FREE AGAIN

January 21st, 2012

So yesterday (Friday) I went in for my daily (Week 1) office visit where they finally unhooked me from my 2 "bag buddies" which I've affectionately named Cheech and Chong. I can't tell you how freeing this is. I have lived the previous week 24/7 with these bags, having to negotiate my way to the bathroom several times per night without tripping over the chords, and constantly hearing the whooshing sound of the chemo poisons entering my body. As if to intentionally damper my mood, the nurse informed me: "Oh - I forgot to tell you - I now have to give you a shot that makes your bone marrow produce an elevated amount of white blood cells to counteract the drop in the white count that will happen over the next couple of weeks. This will give you flu-like symptoms and make all of your major bones hurt in your body, and it may feel like a heart attack!", (Lovely).

Well, I woke up this morning feeling exceptionally great, and was able to have my Saturday coffee session with my best buddies Scott and Mike. I don't know if this is going to be typical for the weeks to come, but so far, this is pretty doable. As of right now, I'm planning to go into work for the next couple of weeks and see how that goes until my next chemo week.

Thanks for all your thoughts and prayers!
Ron

Day 1 of Chemo

So it has begun!

My days during chemo will look like this:
- Go to the hospital in Newport Beach for only 2 hours while they give me medication to lessen the side effects of the chemo.
- Come home with 2 battery-powered chemo bags and receive the heavy dosage of chemo at home over night. Here is what I look like with the chemo bags:

Kinda bulky, especially to sleep with, but doable.
So far no major side effects. I can feel a little nausea coming on but not bad yet.
Here is the diet that we have chosen to go with during chemo:
Breakfast:
- Whole grain, gluten-free hot cereal with a bit of Almond Milk and mixed berries.
- Freshly juiced vegetables (Romaine / Parsley / Cucumbers / Flax meal / Ginger
Lunch:
- Freshly grilled vegetables with hummus.
- Turkey soup
- Rice crackers with Tamari (just a few)
Dinner:
- More raw veges with hummus
- More Turkey soup

All Day: Lots and Lots of water to flush the bad effect of chemo out of the system.

So far so good for Day 1. Thanks again for all your prayers.
Will check back with you at the end of the week.

The Night Before Chemo...

Sunday, January 15
This morning as I was playing horn in my church orchestra, my good friend Dave asked me, "so you've received all this terrible news, you're about ready to go through chemo therapy, why are you still smiling and cheerful?" That's a great question Dave, I really hadn't thought about it!

Well let's see:
1. According to my surgeon, I was supposed to die during the first tumor operation in 2000, or if I didn't, I should have been blind, paralyzed, or otherwise handicapped (none of this happened). So that's about 11 extra years so far that I have already been blessed with. Thanks God!

2. I have an AMAZING family with a wife who supports me 100% and is ready and willing to basically give up 5 months of her life to play nursemaid, chauffeur, and babysitter (of me!); and 3 daughters who, in spite of all my faults, think I am a great dad and love me way more than I deserve.

3. I have the best support system of friends (including Facebook...) who so obviously care about me and are thinking about and praying for me.

4. I have an incredible job (and boss) who are going out of their way to accommodate my illness and stick with me through this difficult time.

5. I have THE BEST church filled with loving, caring, and praying people.

6. I have "Special" friends who I can count on to be there for me no matter what.

So Dave - thanks for asking - what more could I possibly want?

Love you all - I'm ready to begin!

The Preparation

Wednesday January 11
8:30am
I am at Hoag Hospital in Newport Beach sitting in a holding area waiting to get 2 procedures done:
1. Biopsy of tumor in shoulder (ouch...)
2. Installation of a Porta-cath - which will allow them to "plug me in" without sticking a needle in my vein during the chemo sessions that start on Monday (1/16).

I'm a little nervous about it because so far everyone I've talked to that has had this procedure was out during the operation. I was informed that they were only going to put me in "Twilight" sleep, which is really not sleep at all! Hopefully I will be out of it enough to not feel or care about what's going on down there. Will touch back later on to let you know how it went...

3:30pm
I'm done! All went well! Neither procedure was painful, with the exception of a slight pain when they were drilling into my shoulder blade to get the biopsy.

The installation of the Porta-cath was a piece of cake - no pain at all.

I'm now wired for sound and ready to start the chemo on Monday!

The Reality

Nearly 12 years ago I got a migrane headache the cause of which turned out to be a brain tumor the size of "an oversized tennis ball". This was a slow-growing tumor with the daunting name of "Hemangiopericytoma", which is a disease of the blood vessels. The diagnosis was immediate surgery and the prognosis was bad. My family and friends were called into the little Los Alamitos hospital and the waiting room was filled with prayers during the 6 hour surgery. The surgery was a miraculous success and I fully recovered with no side effects!

As is the nature of this type of tumor, 4 years later there was a regrowth which caused my right eye to go blurry, which triggered this discovery. As the tumor was much smaller it was also successfully removed.

Since that time (2004) my tumor regrowths were monitored and remediated through MRIs and some very advanced technologies such as TOMO Therapy and Gamma Knife. Both procedures use a pinpointed stream of radiation to blast the tumor and it melts away. This has been my life for the last several years, and it has just been a minor inconvenience to deal with over the years.

This has now changed.

The last few MRIs and latest CT scans showed an agressive occurrence of tumors in my brain, spine, and now in my ribs, shoulder, and hips. The radiation doctors have now punted me over to the Oncologist. The explanation is like this: my tumors can no longer be treated like pulling weeds one at a time from the lawn - they are growing in too fast and too many. What they need to do now is apply weed poisoning over the whole lawn to kill the weeds to save the lawn. This weed poisoning is called Chemo Therapy.  

The second part of the bad news is that according to my Oncologist, my condition is incurable. From the doctor's experience, these tumors will initially respond to chemo, but they will return, sometimes more agressively than before. 

My chemo treatment will look like this:
- There will be a 3-week cycle. Week one consists of 4 full days of laying in a hospital bed being administered the chemo.
- I get to go home in the evening but take along a bag of chemo that continues to be administered overnight.
- I then return to the hostpital in the morning.O
- On the fifth day, I go in for a disconnect from the IV.
- Week 2 and 3 are basically going back in a couple times for monitoring. 

So the bottom line is that my disease is now a reality and will be soon made very public in that I will lose my hair, my work will be affected as I will have to miss at least a week out of every month for 5 months, and I will have nausea, diarreah, and constipation. Sign me up!

This will be a very interesting journey for me, my family, and my friends as I try to sort out the whys and hows of my condition, deal with an end of life possibly shorter than I had anticipated, and the fear of loss of employment, insurance, and income. My faith and stamina will be tested, as well as the strength of my wife and 3 daughters.