A year later....

One year ago today I had my first r-chop chemo treatment, which means just about this time a year ago I was losing the big cheeseburger I'd had for lunch. That was the last cheeseburger I ate for several months. I think I mentioned on an earlier post the chances my oncologist gave me - around 60 or 70% the chemo would work and get rid of the lymphoma in my neck and put the lymphoma in my sinuses in remission, so I entered 2013 unsure of much of anything on the medical side.
When I left Kirklin Clinic after the final r-chop/methotrexate treatment in March I was crying because I was so glad, for better or worse, the intense treatments were over.
Last week I had a PET scan and my oncologist said it showed complete (or was the word 'total'?) remission. Best possible outcome. I don't know if the great results are strictly because the chemo did its work effectively, or if the Lord healed me through the chemo or even apart from the chemo (He still does that, you know), so I just thank Him for it, whatever the direct cause. I still have to get rituxan (the 'r' in r-chop) once every two months, but it doesn't have the nasty side effects of the r-chop plus methotrexate, which have been described in previous posts.
It seems like more than a few days never go by without hearing about a friend, friend of a friend, or family member that's been diagnosed with some kind of cancer. When you hear about someone who's been diagnosed, offer your friendship, prayers, and support. If you live near them, offer to bring over a meal or two. This disease is very taxing emotionally as well as physically and financially.
I had planned on running a few miles today to mark the year's milestone but was unable to do so for several reasons, including rainy weather. I ran a lot over a decade ago. In January of this year a cousin was in the hospital at UAB after a near-death experience (she's recovered tremendously, by the way). I went to visit her on a Sunday afternoon and parked near the hospital. I tried to run, or even jog, across the street to the entrance, and couldn't do it. My legs didn't recognize that particular activity and I had to settle for walking. A few months later I started walking around my neighborhood, and eventually started mixing in some running. I still can't run over a mile (and slowly at that) without walking a couple of minutes. Not sure if that's because of the long-term effects of the chemo, or is because I've developed asthma since my former running days, or some other reason. I think my long walk/run so far is 7 miles at about a 12 minute per mile pace, where I used to run 5-8 miles at around a 9 minute pace (still not real fast) then go to work. Not sure if I'll ever try to do another 10K run (6.2 miles), we'll see. I run now to burn calories for weight loss and for all the regular cardiovascular advantages.
I've been able to start back at my part-time job this week. Sometimes you've gotta do what you've gotta do.
If you have a good major medical plan, you still need a cancer policy that will pay a lump sum upon diagnosis then pay more during treatments. There are a lot of expenses involved other than the direct medical costs.
Pray for those going through various kinds of cancer treatments. Pray as if it's one of your family members, or even you, going through the treatments.
That's all for now.

Eating/nutrition changes

I’m not a doctor or a nutritionist, haven’t played one on TV, and didn’t stay at a Holiday Inn Express last night. These are just my observations and changes I’ve made in my diet. They may seem drastic, but I believe they are worth it. This isn’t for everyone, but it’s what I’m doing. 

On July 25, my total cholesterol was 284. On September 11, it's 190.  My HDL (good cholesterol) rose from I think (couldn’t find the exact results) 52  to  62 (that’s a good thing). During that time period, I lost about 12-15 pounds. **added on 9/15/13 - I got my Dr. to send me my lab results from July 24 - My triglycerides at that point were 156, glucose was 104 and my HDL was 57.  I had NOT been fasting beforehand so those numbers might be a little high, but probably not much. On Sept 11 my triglycerides were either 45 or negative 45 (not sure if that's possible), glucose was 79.**

First of all, I’m exercising regularly, trying to get in at least 5 walks/runs of at least 30 minutes weekly. I’m sure that has a lot to do with the weight loss and the lower cholesterol numbers.

At the time I started chemo late last year I weighed 243, if memory serves correctly. There were days I didn’t feel like eating, so whenever I ate, I ate whatever I wanted. I finished the major chemo treatments in March, and when I saw a new primary care physician in July, I weighed 256, which is I believe the heaviest I’ve ever been. Friends who haven’t seen me in a long time might find that hard to believe since when I got out of high school I was 6’2”, 155 pounds. My present goal is to get down to 200 pounds. Anyway, my doctor told me to start eating better – more vegetables, fewer eggs, red meat, etc. So I made some adjustments (fake eggs, low fat cheese, less red meat) and started exercising. I used to run a lot, but that’s been several years ago. I started out by walking, and then added in a little running.

Two or three weeks later I read an article posted by my nephew on the true cause of heart disease. http://www.sott.net/article/242516-Heart-Surgeon-Speaks-Out-On-What-Really-Causes-Heart-Disease

What he said made sense, and I’ve found other sources that corroborate the findings. Check the link for more info. Several years ago I tried SugarBusters and SouthBeach and lost weight on them, so decided to go a similar route again.

A friend on Facebook mentioned nutrition and I said I was trying to eat better for several reasons. She sent me a link to a video about how the wheat we have today is not the same as the wheat in the Bible, or even the same as 50 years ago. It’s about an hour long but is worth the time. It’s where the Wheat Belly Diet comes from.

http://www.youtube.com/watch?v=UbBURnqYVzw

So after seeing all that info plus other things, we’ve gone almost totally wheat and sugar free. Yes, that means say good-bye to Papa John’s, Coke and Pepsi, almost all breads, breakfast cereals, almost all pasta. NO fast food, and not just because of the bread. Most fast food has tons of additives and preservatives. Nothing battered and deep fried. I use half and half for my morning coffee instead of sweetened flavored creamers. That took some getting used to.

Cutting out as many GMOs (genetically modified organisms, or Frankenfoods) is part of it. We hope to eventually switch to all organic, but at this time that’s cost prohibitive, as it is for many people.
Study the effects of MSG (monosodium glutamate), for example, and you might toss all food in your panty or fridge that contain MSG. Check for it in salad dressings, especially ranch, as well as seasoning mixes.

I’m now eating more vegetables than ever, including a lot of steamed veggies, plus broccoli and/or cauliflower daily since they’re among the top veggies with cancer-fighting properties. A friend said I should aim at having 25% of my plate containing meat, and the other 75% having vegetables. 

The diet I’m following for the most part is listed here:

 http://www.wheatbellyblog.com/2012/12/wheat-belly-quick-dirty-2/

It has similarities to SugarBusters, South Beach Diet, gluten-free eating, a Paleo diet, a low glycemic-index eating plan, and the Atkins Diet to a lesser extent. Let your diet include a large percentage of single ingredient foods, limit starches (sweet potatoes or brown rice are allowed, but not every day), stay away from overly processed food. Use whole eggs, healthy oils (olive oil and coconut oil for example), butter (not the fake stuff, not even the so-called “cardio healthy” stuff), full-fat cheese, and milk. As always, moderation is one of the keys. Don’t fill up on steak to the exclusion of veggies. It’s still a work in progress.

I’ve been spending time doing research into what’s healthy or not healthy. I’ll be glad when it’s just part of my lifestyle and I don’t spend so much time doing research or thinking about it.

Other fun facts:
2 tablespoons of flaxseeds contain over 100% of the recommended daily allowance of omega 3 fatty acids. That’s the same good stuff that’s in salmon and other cold-water fish.
Most regular peanut butter, even name brand, contains partially hydrogenated vegetable oil. That’s the stuff in margarine that many brands are taking out due to the publicized negative health benefits. Even a lot of natural peanut butter has sugar and oil added. We now only buy peanut butter where the ingredients are peanuts and salt - period. You have to stir it since the naturally occurring peanut oil separates, but it’s a small price to pay, and it tastes great to boot.
Publix ground beef doesn’t have the pink slime that has been in the news the last couple of years. I emailed them asking about GMOs and they said their buyers never knowingly buy any GMO produce. Google it if you’re not familiar with it. 

Okay, that’s enough.

Random post-chemo thoughts

One of the things I'm most grateful for is that I never got a headache after any of the six lumbar punctures I had, 5 for methotrexate and 1 in an ER visit in January. I was always told it was a possibility, and they are very severe, so I thank God I never got one.
"Monday" isn't nearly as scary as "lymphoma," "cancer," "chemo," or a number of other scary words. Everything is a matter of perspective. It got to where things at work didn't upset me as much as they used to, especially if I was feeling okay physically.
Still waiting for all of my short-term disability days to get approved so my vacation days can be restored. I was going to have all this week off, but will  only be off Monday and Tuesday as it looks now. At least that way I'll have the other days for later.
It's hard for me to watch commercials for Cancer Treatment Centers of America. As far as I know they do a great job, but I'm not to a point yet where I can see treatment facilities without it bringing back too many memories that brought about days of very uncomfortable recovery.
Last year's Christmas season (Advent in the liturgical calendar, then Christmas beginning Christmas Day) and this year's Lenten season haven't meant as much to me since it seemed like I was spending all my time either going to chemo, getting over the effects, or getting ready to go again. Hopefully I can enjoy and appreciate Advent/Christmas and Lent/Easter more in the coming year.

Done with full chemo treatments

I'm finished with full chemo treatments, but found out I'm not totally finished with chemo. My oncologist said at the start that the lymphoma in my neck could be cured but the lymphoma in my sinuses could only be treated. The latest pet scan showed the lymphoma in my neck is gone, and the lymphoma in my sinuses is basically a speck instead of a mass. I have another pet scan in two months. The oncologist wants me to continue getting one kind of chemo every two months for two years to make sure the place in my sinuses doesn't come back. That's one  kind of chemo every two months instead of six kinds every three weeks. I'm finished with the intrathecal (lumbar puncture) methotrexate treatments, though. I think that was the main part that has been making me sick for a few days after each treatment. At this point I can't think about it without starting to gag.
Post-round 6 has been as bad and maybe a little worse than post-round 5, and it had been the roughest one so far. My emotions are still on a roller coaster after finishing the full six rounds of chemo. I could just about cry, gag, or probably throw up on demand. But with all that, the doctors, nurses, and everybody at UAB and the Kirklin Clinic have been great through the whole ordeal.
There are a few foods and drinks I used to like that I now either don't care for, could take or leave, or can't take as often as I used to. Maybe that'll change over time. Not sure. I'm still planning on making chili next weekend though. Haven't lost my taste for that. I could really use some chicken quesidillas and rice from a good Mexican restaurant. Maybe a big plate of nachos.
I got my head shaved after round 5. My hair would normally start growing regularly in a few weeks, but I'm not sure how the bi-monthly chemo will affect it. It's really not a big deal to me either way.
A former pastor of mine used to say "There's been a lot of times I've been a sorry Christian, but I've never been sorry that I'm a Christian." Hopefully you understand what that means. I have many faults, but I'm grateful I was raised to trust the Lord. I don't do it perfectly, or even very well most days, but I know He's seen my through this. I've got friends more spiritual than I who have died of cancer during the last year. I can't explain why things happen like they do, but I know God is in control of all things. I've seen God answer prayers in times of need in unexpected ways several times in the middle of all of this.
I'd like to thank all who have kept my in their thoughts and prayers, whether we share common beliefs or not. Most who read this have the same core beliefs that I do, others don't. And that's okay. So I'd like to thank:
My present church family at Lamb of God Church in Helena, Alabama,
My friends I know from Fairview Baptist, Good News Baptist, and Christ the King in Selma,
Selma High School class of 79,
Others who have battled cancer or are still battling it now,
Friends from Stephen King facebooks groups I'm in,
The online fiction crit group at The Writing Well I'm in, though I haven't been able to contribute much since all this started,
My coworkers at Jack Henry and Associates who have had to take on a bigger workload for all the days I've had to miss,
Fellow clergy in the Charismatic Episcopal Church,
Family members who've helped in so many ways,
My wife, Audrey, who's helped keep her eyes on me and has reminded me to take my meds and has put up with my sometimes less than cheery disposition,
Coworkers from Publix and other places,
Anybody I left off of the list above.
I'll still post from time to time.
Grace and peace to all. 

Chemo - round 5

The recovery for round 5 has been the roughest yet. I was feeling very apprehensive beforehand and don't know if that contributed to the next few days. The treatment was Wednesday and I got sick about 10 PM Wednesday night and off and on Thursday until 10 PM at night, which is about 12 hours beyond the usual sickness period. Still felt bad Friday, then felt on Saturday about like I've been feeling on Fridays.
As usual the Prednisone is knocking my sleep patterns for a loop. I'm supposed to take it the 5 days after chemo, but there was no way I drink milk or eat anything to take it with on Thursday, so I took my first dose about 2 PM Friday, and finally got to sleep about 2 AM Saturday. Yeah, wah, wah, wah. :)
I was going to get some writing or at least reading done, but that hasn't happened. The book I've been reading for a long time is over 1,000 pages and couldn't prop it on my stomach to read in bed. The first few post-chemo days I can't stand for any weight to be on my stomach. It's heavy enough as-is.
I'm thankfully off work again tomorrow (Monday). I can no longer stand to even think about drinking Carnation Breakfast Essentials or Boost. I did watch a few chili recipe videos on YouTube this evening. Sad.
One more round to go on March 20. I'll find out then what the plans for the future are as for as regular scans, tests, etc.
I haven't been able to go get my head shaved yet even though about 80 to 90% of my hair is gone. A good friend provided a great Auburn cap for my over-sized noggin, so that's my everyday hat now, even though I have others I wear from time to time.The hair or lack thereof doesn't concern me much. It'll grow back in a few months.
Thanks for everyone's continued thoughts and prayers.

My chemo regimen

A couple of people have asked about my chemo regimen or have said it seems intense. From what I understand, yes, it is a rather intense treatment.
My chemo days start with intrathecal Methotrexate, which is given through a lumbar puncture at UAB hospital in I believe Interventional Radiology. I know how to get there but don't read the signs.
Then I get wheeled over to the Kirklin Clinic (don't need to walk the quarter mile or so in the internal corridors by that point) to Infusion Therapy for Rituxan, Adriamycin, Cytoxan, Vincristine, and then Prednisone tablets at home for 5 days. This is known as "R-CHOP" chemo, plus the Methotrexate.
Four down, two to go.

Chemo, round 4

The worst part about chemo to this point has been the aftermath of the chemo, not the treatment themselves.
On Tuesday of this week I had a PET scan, which shows where the cancer is and if it's spread, gotten smaller, etc. My oncologist told me Wednesday afternoon that the large B cell lymphoma in my neck is gone, and the small B cell lymphoma in my sinuses is in remission. That was the best news possible from the situation. After the sixth chemo treatment I'm not sure if I'll regular PET scans or what exactly will happen since the oncologist said the small B cell couldn't be cured, but could be treated.
On Wednesday I started out again with the intrathecal chemo, where they do a lumbar puncture to draw out some spinal fluid then inject some chemo (methotrexate to be exact) into my spinal column so it can get to my brain. I wasn't feeling so hot by the time the intrathecal (on the 6th floor of UAB hospital) was over and I was waiting to be called back to the infusion room (at Kirklin Clinic) for the regular chemo. I slept most of the time, which was good.
Wednesday night wasn't as bad as the first two rounds had been. I've learned to eat very little on chemo day to lessen the likelihood of getting too sick that night. I was sick (again, throw-up sick) Thursday morning, and like cr*p most of the day Thursday and Thursday night, but not as bad as last time.
I feel a little better today and have eaten more ( a one egg omelet this morning and a blueberry pancake tonight) than on Fridays after rounds two and three, but not as much as I usually eat, which is too much. Hopefully by Monday I'll feel up to taking on a Moe's burrito.
My brother, Barry, was with me for the day on Wednesday and Audrey was with me after my middle stepdaughter had surgery at a different hospital the same day.
Thanks for the continued prayers. I'll still have the fifth and sixth chemo treatments to further make sure all the bad gunkie is gone.
Shout outs to all who have offered their prayers, good thoughts, and best wishes.
God is good. I got good results, but even if the doctor would've said the cancer had spread, God would still be good.