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!
Monday, January 30, 2012
Saturday, January 21, 2012
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
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
Monday, January 16, 2012
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.
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:
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.
Sunday, January 15, 2012
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!
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!
Wednesday, January 11, 2012
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!
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!
Sunday, January 8, 2012
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.
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.
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