(11) More than halfway done – but who’s counting?

This is the most boring summer camp I’ve ever been to.  Finished treatment 17 this morning and I’ve yet to spontaneously combust, although I have some minor side effects like sunburned skin in the treatment area, a little foggy headedness, and some localized swelling – all under control.

I need to either get a jump-rope or a rebounder, one of those little trampolines, to combat this swelling.  My search continues…

Got bloodwork results on Tuesday and I’m told everything looked fine. How odd it is to be assured from the beginning that I’m going to have a successful experience.  Like being told by the IRS, “this will just be a small audit.”  I know am fortunate for many, many reasons but I’m learning my treatment outcome will not be known for a while – as long as a month after my last radiation treatment.  I was hoping for a mid treatment PET scan. (That shows a little foggy headedness right there – PET scans have been unpleasant for me – but I still want one.) It would have been great to have some hard proof the radiation was working, but I’ll have faith and be patient.

I understood mid-treatment scans are typically used as a guide to see if there needs to be adjustments. One reason I was given for not getting one is that some of the micro-sites hadn’t grown enough yet to be detectable anyway, so even a totally clear scan would not influence the treatment plan. I guess it’s a good thing to just keep-on keeping-on.

I sure hope I can continue doing it all like this for the next 17.

Thanks for checking on me!

(10) SEX SEX SEX

I mean six.  Day six is over!

It’s been a long time since I had “weekends off” in any aspect of my life.  It was 1984 to be specific… and come to think of it, I worked a lot of weekends back then as well.  After a week of radiation fun, I was really looking forward to the weekend and really, really not looking forward to Monday.  But Monday has come and gone.  I’m still doing well.

I was nauseous today. Rumor’s goin round that could be one of my side effects. No reflection on the cuisine I’m sure; I ate at Our Way Café.  My system no likey.  Had their famous and delicious salmon loaf with dill sauce.  Lost my appetite when I saw the sauce.  I ate it anyway.  The entire afternoon was one of those “If I could only throw-up I’d feel better” times. Sorry if that’s gross.

Week 1 went by quickly but felt forever.

On my Friday evening appointment I learned something NOT to do.  My friend Jeff, who was an RN at some point in his past, really wanted to come with me and see.  Up until then, I had gone to every appointment solo.  Seeing things through Jeff’s eyes, I realized a few things.

First, the whole scene there is very emotional with fear being the quicksand everyone is trying not to sink into.  Not just patients but everyone breathing the common air.  However a person is naturally inclined to be when emotional – that’s how they are waiting outside of Radiation.  Sniffling and red-eyed forcing a smile; hyper and not sitting still for more than 5 seconds; withdrawn and silent maybe even with eyes closed/asleep; inappropriately loud laughter, and more.  What’s going on at a cellular level must certainly being influenced by the energy immediately around.

I also realized I must have learned to detach from my human body and rise above and calmly observe the goings on with a third party perspective.  Didn’t realize that was what I had been doing. Having Jeff there prevented me from quasi-hypnotizing myself through the process.  Friday I was nervous for very first time since I went to the doctor about my swollen lymph node. (I got agitated when they tried to give me a PIC line in error – but never before nervous).  I made it through all last week without taking any relaxants or anti-anxiety prescriptions.  Friday evening, however, my blood pressure was elevated, so I had to drink water, uncross my legs, feet flat on the floor, breath deeply and relax… and keep losing my spot in the line-up until my BP risk lowered.  Hurry up and relax.  They have music you can listen to, relaxing art on the walls… I finally hypnotized my blood pressure down and off we happily zapped.  Is this what mediation is?

Finally, I laughed several times today at some advice my friend Samuel shared with me.  He’s both a brain cancer survivor and a psychologist.  He told me, “don’t underestimate the importance of denial when fighting cancer.”  Having company at my appointment didn’t work for me.  I need to constantly recall the “apple fritter” comment the nurse said to me the first day.  This is about me.  I’m pretty sure I can remain focused, stay floating, and meld my denial through 11 more treatment days.

SEX SEX SEX

(9) Things are going well

It’s taking longer to drive and park than to get zapped.  Rash is mostly gone.  They think it was from soap/detergent or clothing that’s too tight.  I’m skeptical but the cream I’m using seems to have worked.  It is a little early to have side effects.

I showed another patient and his wife the Dekalb Farmers Market today at lunch.  They’re from Charlotte; he’s had chemo and is now following up with radiation.  They’ve been eating a lot of fast food and did not know about the FM.  They were excited by the choices in the restaurant, but I thought it was funny because they ended up getting pizza and mac and cheese. Well, at least it’s not McDonald’s.

Thought this article from WebMD was interesting…

Psoriasis is more than skin deep

The 7.5 million Americans who suffer from psoriasis are at increased risk of a number of other serious medical conditions including heart attack and cancer.

One new study, presented this week at the annual meeting of the American College of Cardiology in Atlanta, suggests people with psoriasis are more likely to have heart attacks and strokes than people who don’t have the skin disorder.

Researchers from Copenhagen University Hospital in Denmark tracked rates of psoriasis, heart disease, stroke, and death in the entire adolescent and adult population of Denmark between 1997 and 2006.

They found that people with psoriasis were 54% more likely to suffer a stroke, 21% more likely to have a heart attack, and 53% more likely to die over a 10-year period than people without the skin disorder. They were also more likely to need a procedure such as angioplasty to open up clogged heart arteries.

“Psoriasis sufferers were at highest risk for cardiovascular problems,” says study researcher Ole Ahlehoff, MD. The analysis took into account other risk factors for heart disease, including age, sex, medication, and other health conditions.

“People with psoriasis should not only seek care for the symptoms of that disorder, but should also be screened for heart disease risk factors and make lifestyle changes to minimize their risk of future cardiovascular problems, such as maintaining a healthy weight,” said Ahlehoff .

Another study shows psoriasis is associated with an increased risk of cancer, including skin cancer, prostate cancer and lymphoma.

Researchers from Health Economics and Outcomes Research at Abbott Laboratories combed through their insurance claims database that has information on about 93 million Americans. They identified 37,159 people with psoriasis and compared their rates of cancer to 111,473 people without the condition; their ages were similar. People with psoriasis were more likely to have high cholesterol, high blood pressure and heart disease.

Over an average period of about two-and-one-half years, 34.8% of people with psoriasis were diagnosed with cancer. In contrast, only 23.2% of those without the skin condition developed cancer. That translated to a 56% higher risk of cancer for people with psoriasis, the researchers report.

As for types of cancer, people with psoriasis had a 87% higher risk for lymphoma, and 22% higher risk for prostate cancer, the study showed.

Some of the treatments used for psoriasis may have increased their risk of skin cancer, says Alan Menter, MD, chair of the psoriasis research unit at Baylor Research Institute in Dallas. But the link to the other cancers can’t be explained by therapy, he says.

According to Menter, the underlying inflammation that drives the development of psoriasis appears to predispose people to cardiovascular disease, which also is thought to be fueled by inflammation. But in the case of the other medical conditions, “we are unsure whether psoriasis causes other diseases or that these other diseases cause psoriasis,” Menter says.

The important thing is that people with psoriasis undergo a thorough health evaluation, he says.

Thanks for checking on me!

(8) Let’s not be rash

What side effects?

Day three is over and it feels like I’ve been doing this for weeks already.  Still haven’t figured out the sleep thing – I’m normally a late nite kinda guy and 6am rolls around pretty quickly.  I came home and slept again after the morning treatment but I need to be busy working on my move.  So my head will be on the pillow at 11pm in a few minutes and see how that goes.

I started getting a very itchy inside thigh last night and it was no better this morning. Turns out this rash is a very common, almost a universal side effect with placement depending where one is getting radiated.  Feels itchy and puffy like what an insect bite reaction might be.  No biggie… may this be the worst of things to come!

I’ve been juicing before my evening appointment… pretty much my normal juicing recipe: carrots, spinach, beets and beet greens, pear, apple and a bit of ginger:took some pics of that. 

May look a little weird but tastes AWESOME and gives me lot’s of energy. 

Many thanks to my friend Burt who brought by a beautiful box of ripe fruit. Yummm.  Plums, peaches, nectarines, apricots and a watermelon!  Already have eaten most of it!   LOL.   All in all, an excellent day.

Thanks for checking on me!

(7) Day 2 complete!

Everything is going very well.  Arrived this morning and discovered I was awarded 3 smiley faces.  Apparently I am very talented at lying perfectly still.  I’m on time and ready for my appointments.  And I have a cheerful disposition. Yeah me. : ^ )  : ^ )  : ^ )

I’ve got to figure out how to manage my time with the treatments/productivity.  On Monday, I had to get up at 6am and was very busy all day until my evening appointment.  I was REALLY tired after, not from the treatment – I’m just not used to being up that early.  So I fell asleep about 8pm and sleep until 3am.  Got up and turned on the dishwasher and was putting some things away in the kitchen and noticed water pouring out of the cabinet from under the sink.  Fortunately I was standing right there to notice; otherwise it would have completely flooded the kitchen.  One of the plumbing connections between the dishwasher and the disposal had come loose.  Fixed that and cleaned up… and was up at 6am this morning for Day 2.  I did come home and go back to bed though.  Got a lot done tonight after my evening appointment.

I am going to the gym everyday and doing the treadmill (45 minutes) and some machines – mainly abs and lower back.  Studies show that exercising during radiation helps with the fatigue that may be coming in future weeks.  Exercising the muscles in the treatment area may help prevent possible movement limitations / fibrous issues.

No real problems but I do have a very itchy inside thigh on my right side (treatment side). I’ll mention it in the morning.

Thanks VERY much to ya’ll who have texted and emailed and left comments.  I’m still trying to stay off the phone since I have to accomplish so many things everyday, but I’d really appreciate hearing from you.   I’ll start taking some pictures also to make this blog thing more interesting.  Peace out.

(6) The most boring cancer blog ever

Before I share the exciting details of my first day of radiation, it appears the layout of this blog is somewhat unclear.  There are posts in addition to the one the link took you to.  On the right side under Recent Posts, there are more posts.  Many questions can be answered by reading the one above this next to “Home” titled “In the beginning” > https://donwestonblog.wordpress.com/about _____________________________________________________________________________________

About two weeks ago, I had my “Simulation” for my radiation treatment.  They had me lay on an interesting high tech material that was soft like a comforter when warmed, but created a mold of my body form as it cooled and hardened. This mold insures that I am positioned in exactly the same way each time I lay down on the treatment table.  The room has several red lasers that shoot across the room criss-crossing the treatment table as well – very Mission Impossible.  I mentioned to some of you how I had declined being tattooed during the Simulation.  They normally tattoo small freckle-like spots in the treatment area to help line me up to the equipment.  I was re-marked today with a permanent marker that will be “freshened up” everyday, so no tattoos will be required.

At the Simulation, we went through everything that I was to happen today – and it all went exactly as planned with one exception.  I needed an EKG before we began (I knew that was going to happen) and while they were hooking me up for that, a nurse came in with a rolling cart with needles and some equipment.  Uh-uh. She was there to insert a PICC line which requires a live X-ray.  That, however, was not on Don’s menu of delights for today.  At first she thought I was joking when I said I wasn’t getting a PICC line.  She tried to explain why it was standard procedure and said, “It makes things easier.”  To which I replied, “Easier for whom?” She said she’d check with the doctor but after the EKG, I went right into the radiation treatment room.

Big clunky thing.  Looks like it was designed with alien technology. Took about 10 minutes to line me up, maybe longer.  Then they brought in a nice warm blanket and covered me… awwwwwwwww.  The lights were low already but then it got downright dark. That clunky thing rotates around and hums and took some digital x-rays so the computer can compare my treatment plan to the actual flesh laying there.  The whole thing is pretty much like that x-ray machine at the dentist – but much bigger.  It rotated and spun a bit.  When it’s emitting the radiation, the piece facing me looks like the shutter on a camera and opens a tiny bit and then closes.  Took a little longer than I expected, but still under 5 minutes.  Then I was done.  Blanket was still warm.

This evening (7pm) there should be no additional tests, so just in and out.  Kinda boring.

I do want to mention for all of you who are worried about me… thank you.  There is good reason to be concerned about any cancer diagnosis but today I was by far the healthiest patient I saw.  When I arrived and checked in, I sat down in an area away from anyone else. It was clear that most of the other folks waiting had chemo as well, many wearing masks, and I found it difficult and troubling to look at them.  I had brought a box of apple fritters from the German Bakery with me, thinking I’d give them to the staff and nurses and doctors.  When they called me to say it would be about 10 minutes more, the nurse oohed and aahed at the pastries and thanked me, but suggested I offer them to the people in the waiting room.  This truly shows how wonderful these people working there are – I mean, who turns down an apple fritter from the German Bakery?

I went from one cluster of people to the next, offering them the fritters and having them be very appreciative.  It was hard seeing how sick many of them are, but inspiring and heart breaking at the same time to see the brave faces on the patients and the friends and families accompanying them.  When the nurse called me to go in I told her all the fritters were gone.  She asked how that went.  I said, “it was interesting.” She looked right at me and said, “Don, it’s time for you to understand this is about you.”

(5) Welcome friends and family

Up until now, this blog has been sort of my diary.  Within a few hours, I will start getting microwaved.  I am way more eager and grateful right now than nervous.  Eager to get started (and get finished) and very, very grateful to be in the remarkable position I am in.

As far as a cancer diagnosis goes – this is the one to have.  It’s amazing to have recognized this cancer, at this stage, before any more of my body is involved.  It’s amazing (I’m just gonna keep using “amazing” over and over here because I can’t think of a better word) to have insurance, and amazing to have access to wonderful treatment options and caring doctors and others involved.  Not very many people (numerically) know what’s going on with my health, but I know this amazing core group that I have shared the news with is all the support I may need.

The plan is for 17 treatment days, using a hyper-fractionalization regime, two exposures a day.  I should be done by July 11.  They will evaluate along the way if the cancer is dying appropriately from the exposures, and if the side effects are not too much for me.  If we need to adjust, it could add additional days, even weeks.  Please keep in mind that we are going for a CURE, so I honestly don’t care how long it takes.

I made this blog up so you could check to see how things are going.  I’m told I will most likely have no side effects for the first two weeks… and that’s how long I have left to move my office out of Suburban Plaza… so rather than chat on the phone with folks how I’m doing – I need to be concentrating on organizing and packing and moving.  After the move is over, I will have more time for one-on-ones about the treatment.

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I would like to invite any Atlanta folks to set aside the July 4th weekend – Sat 6 and Sun 7.  That will be my final push to vacate Suburban Plaza and I may need help then.  And we can end the days at the pool celebrating!!!  As we approach, I’ll figure out more details.
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I am still very sensitive that word of my treatment not be shared.  It is not at all about any “stigma” about cancer. I intend to do what has to be done, be finished, and leave this behind me.  I prefer marching through this without having to spend time and emotions updating and assuring others. It is easy to say, “just take care of yourself” but I know myself and I will feel responsible to those who are praying and worrying about me. Also, much like sharing pregnancy info early on – I think it’s wise to wait past a certain point… just in case.  So I’ll tell more people after I’m done.

Thanks for your love and support, and good thoughts and prayers. I’ll use this vehicle and update the blog daily.

– Donaldo

(4) My decision to treat

No hay tiempo como el presente.

I spoke to several people today about my situation.  One friend, who had his own recent cancer scare, told me he also was very hesitant to share his diagnosis and treatment with others for very different reasons – but had the same motivations.  He didn’t want, as he said, to be “the host of a pity party.”  Another acquaintance who was with him, who had no actual knowledge about my disease or treatment felt compelled to offer that “radiation treatment is totally unnecessary today because there are natural remedies that do a better job, including juicing. (which I’ve done for over 10 years now.)  I also spoke to a person I did not know, who was referred to me by Emory, who also has Follicular Lymphoma.  This person is certainly knowledgeable, but has chosen a different treatment pathway. Lot’s of thoughts about treatment, so I want to share my thinking behind my decision not to ‘watch and wait.’

Coincidentally, I was alerted yesterday that the insurance company was requiring additional information from my doctors before approving the procedure.  I was reassured this was normal, especially in situations where there are different possible treatments and one costs the insurance company very little and one costs a lot. I was also told I should not worry because they (the doctors) have crossed this bridge many times and it will be approved.

In my “In the beginning” post, I listed several widely agreed upon reasons that patients with my diagnosis decide not to ‘watch and wait’ but rather seek treatment.  One of those reasons is just “because.”  I guess my thinking falls into that category.

This is not meant to be medical advice for anyone else. For me, ‘watch and wait’ was not going to work.  I’m very familiar with the concept. I have other chronic issues that I’m watching for, so I’ve learned how to have a measured, reasoned, scientific perspective as symptoms surface.  It’s not that I couldn’t watch and wait… it just doesn’t make sense to me.

First off, I think it’s important to realize that data about percentages of survival, outcomes by treatment types, etc… these are all evidence that we are all just lab rats and guinea pigs for the medical professionals.  That’s sort of their job to document and identify what seems to work and what doesn’t. But the “average” treatment would be wrong for any of us lab rats at either end of the spectrum.  And I am on the young and healthy end of that spectrum.  I have the great fortune of discovering the lymphoma involvement in only one area of my body.  What sense does it make to watch and wait to see if my indolent cancer becomes more aggressive – just because they have effective chemo treatments when that happens?  Right now there is a 50% CURE rate with radiation treatment for folks in my situation, and I am absolutely certain that I am on the favorable side of that equation.

My next consideration is my access to healthcare in general and to Emory specifically.  I know there are options should I not have insurance in the future, but I am confident in the both the doctors and the treatment available to me now.  And for the mere deductible of $2500, the rest will hopefully be paid for by the insurance company, now.

Finally, I want this to be over.  I’ve got lots of things I need to get done and I want it gone. I’m not being a cock-eyed optimist.  I understand there are risks and any one individual’s outcome is unknowable. And I am scared.  But I am also reminded of something that happened to me back at Jane Long Junior High School.  Like most of the 7th, 8th, and 9th grade memories, I have totally repressed most of the details.  For some reason I can’t recall, 3 or 4 boys including me got into trouble.  Was it the time we poured a pound of glitter through the 6” hole cut in the floor in art class when they were installing air conditioning into the classroom below? (No, we did not have AC in schools in Houston in the 70′s.) Anyway, we got into trouble and were ordered to the vice-principal’s office for swats.  That’s getting hit on your bare butt with a wooden paddle.  Can’t recall the sadist’s name, but I think it was one of the coaches.  Each of us entered his office individually after being officially scolded in the outer office with a punishment of 3 pops each. After the horrible sound of three swacks coming from his office, my confederates each left briskly holding back the tears and not making any eye contact.  When it was my turn for punishment, I was given the option of getting one swat each day for the next three days, or get all three today.  I didn’t have to think about it for long – I wanted it over, so I opted for all three right then.  Apparently the other boys were asked the same question… but to my astonishment – I received only one swat!  That wicked paddler was administering the OTHER punishment option than the choice of the victim.  Truly evil.  They opted for one a day and got three right then. But in my case, I only got one pop and was never called back to the office for the other two.   I religiously avoided being seen by that vice-principal, being anywhere near the office, and glitter until I got out of middle school.

I’ll take all my swats now, thank you.

(3) Pic: June 9th, 2013 at my Dad’s in Texas

(2) It’s not all good

As some of my new age friends would say, I’ve always “resonated” with the ancient Chinese philosophy of Yin / Yang.  I recently found a report I did in the 4th grade where I wrote “everything has it’s pluses and minuses, even if it’s hard to see at the time.”  Not only am I impressed that I apparently understood that concept at age 10, but that I could spell “pluses” and “minuses” which now forces me to pause as I type this.

“Silver linings” discussions can be very cliche.  I think the ultimate lesson is to realize that any judgment on the positivity or negativity of an experience is simply mental masturbation.  It’s easy, it feels good, we seem to be in control of it and therefore, perhaps, we have some hand in its outcome.  Sorry Law of Attraction zombies, there really truly is a dark side to life and filtering out the Yin will only create a seething dark pool of Yang that will inevitably jump out and bite you.  It is the recognition and acceptance of the two complementary forces that makes for peace.

And so I will march towards my cure with only positive outcomes in mind, but I will also try to embrace the parts that are not that good.  Right now, this minute, I am feeling hurt and confused by the reaction of some people to my cancer disclosure. This has prevented me from fully proclaiming (whatever that means) my disease.  I may be blaming more on them than is fair.  I realize we all – EVERYONE – has crosses to bear.  Most folks are already at their capacity for dealing with problems and disturbing situations and may not be able to absorb my news and carry on with normalcy.  But I don’t want a marching band and parade.  So far when disclosing my diagnosis, I’ve felt it was necessary to be a cheerleader… “but the good news is…”

So I mainly told folks I see every day.  Suzanne, the checkout lady at Publix knows.  She said. “I’m so sorry to hear… you are such a nice person.  I’ve never seen you when you weren’t smiling.”  She frowned and started to tear up. I said, “I’ll be fine.  My problem is minor compared to most people in the same boat.” I’m going to practice just saying, “thank you.”

Back when I had the lymph node surgery, I missed many of my daily trips to the post office.  When I did finally show up and got in line like I usually do, albeit walking funny because of the drain… my postal clerk friend Bill saw me in line, left the counter, and motioned me to the conference room to the side.  In private there, with a line of other folks waiting, he asked what was going on with me.  I told him and about the surgery and the diagnosis.  He broke down crying right there, and of course I did as well.  At the time, I did not know how favorable my treatment outlook was going to be. It was very tough.

Then there’s the friend who has ignored my news completely, and has manufactured some problem between us, and now isn’t speaking to me.  I wish I knew a way to correct this that did not drain my energy and emotions – resources I need to maintain and marshal for myself.  I can’t help but think how selfish this person is being, but I get exhausted thinking what to do about it – and I haven’t even started my treatment yet!  Should I accept that this person does not have the capacity to be my friend right now, or is this the sort of test that defines friendship and I should just go ahead and “cut bait”? Are they reacting this way because they are afraid of losing me, and are preemptively disassociating from me to avoid that possible pain?  Or are they choosing this route because they really weren’t that good of a friend to begin with?

The reality is… a large part of me wants to crawl off and just be alone without telling anyone, and I’ll come back when I’m all better.  Most people I’ve known or heard about going through cancer treatments are not like that at all.  They seem to want and have someone (or many) at their side, holding their hand and cheering and praying.  I recall the same dilemma when I had my heart attack and was recuperating. I certainly appreciated those who helped out and wanted to be with me, but a part of me just wanted to be alone. I felt had to “take care” of my supporters, and I really just wanted to take care of me.

As it turns out, I have not told many people about what’s going on.  By far, the people who I’ve told have responded with genuine offers of support, love and help in any way I need help. I’ve talked about it with friends who have had similar heath challenges.  Dear friends who I’ve relied on for help in the past and a few I know would gladly step up should they be a need. I just told my family while visiting Texas on June 9th, and if the prognosis / treatment was different – I know unquestionably they would physically be here at my side.  It was unfortunate that my initial experience in disclosing the diagnosis was met with a couple tepid reactions, to say the least, but I have a much larger network of support that I have not even begun to tap.  Hence my questioning whether or not that is something I need or want.  I just do not know.