(16) Somewhere there’s a fat lady singing

Yes, it’s over.

This would be the perfect time to share great wisdom that can only be realized through trials of fire; sage thoughts about overcoming and faith, hope and courage, warriors and heroes.  I don’t want to upset or insult anyone, but honestly what choices do people with cancer have? Certainly there are factors within our control that influence our process – including attitude, nutrition, and faith in general.   Not sure how much that stuff counts.

What I do not have control over is the translocation between chromosomes 14 and 18 that stops cells from dying at the right time, which lead to lymphoma.  That’s in my DNA.  Why did this mutation occur?  The more relevant question for me now is how effective was my radiation treatment at damaging the genetic material within those cancer cells and limiting their ability to successfully reproduce.  Hope they got them all.

One irony… about a month ago, at my last 6-month dental cleaning, the dentist wanted to take x-rays just like they have at all my previous appointments.  I asked if that was really necessary… since there was nothing at issue 6-months ago, could we perhaps do x-rays at my next appointment in 6-months?  I was concerned about getting too much x-ray exposure.  And now, over the past 17 treatment days, I have been exposed to 30 Gy fractionalized plus a boost of 4 Gy, many, many thousand times more powerful x-rays.

So yes, this morning was my last treatment. But no happy dance for me yet. I am feeling nervous and hopeful that I will never have to step foot in that building again.  As inelegant as this is, it is true – this cancer treatment experience has truly sucked.  I respect the folks working in this field immensely, but Emory is like a factory.

No one likes hospitals.  I know this. They are buildings filled with the communal spirit of hope barely disguising deep crevasses of fear.  But is having cancer treatment really courageous??  What choice does one have but research the issues and then trust the doctors?

I’m a lucky duck. Early presentation and early staging, favorable diagnosis, insurance, treatment field below my diaphragm, very manageable side effects, no chemo and no drugs after radiation for now. And all I have to worry about is the $6250 I owe…. just my first appointment, the simulation, cost more than 2x that!

Just like a microwaved potato, I will continue to cook for a while. Side effects will fade and I will go for my PET scan in August to find out if I’m really done for now.  And that’s when I will gladly accept congrats and do the happy dance.

Much gratitude to those came by to see me, helped physically move my stuff, called emailed and/or texted moral support.  I am a bit too close to it all right now to be able to reflect more, but thanks very much.

In the picture I’m ringing the “Radiation Vacation” bell today.  Lime green is the chosen color for lymphoma awareness.  I’ll update the blog if something new happens, and will definitely share details in August when I get the official results.

Thanks for checking on me!

(15) Day 14 – getting nervous

Apparently I got dehydrated during my busy weekend and my blood pressure was problematic at both appointments today. Treatments went ahead but ended up getting two blood draws. Drat! My appetite has been good and I ate all sorts of things over the holiday including yummy Community bbq and about 16 ice cream sandwiches – and still lost 2-lbs!

Lots of information today.  Indications this may be a battle, not the whole war. I’ll see both my radiation oncologists tomorrow for the first time. Sorta nervous about that.

I chose this ‘radiation only’ course of treatment for many reasons.  Today we talked about the latest statistical results below.  Keep in mind that although this is for “my disease” stage 1 low grade follicular lymphoma, there are lots of variables. I find numbers interesting (especially when they are good numbers) but recognize I’ve always been and will continue to be an exception.

Here are the number of progression-free survivors at 57 months post treatment:

• one among 26 patients (4%) receiving combined modality with radiation;
• nine among the 57 patients (16%) receiving rituximab-chemotherapy;
• six among the 25 patients (24%) receiving rituximab monotherapy;
• nine among the 35 patients (26%) under watchful waiting; and
• 18 among the 56 patients (32%) receiving radiation therapy alone.

So the numbers are on my side. I bit tired. More on Tuesday…

Thanks for checking on me!

(14) Surprise visit from Anne

I probably shouldn’t write this since I’m in Georgia, not CO or WA or CA, but it is funny and no one is reading this blog anyway.  I’ve enjoyed meeting the woman with the time slot right before me at my evening appointment.  Her name is Anne which is perfect because she resembles and speaks like Ann Richards, my favorite governor of Texas.

This Anne is usually accompanied by either one of her grandchildren (who appear to be my age) or her boyfriend (who also appears to be my age).  This is Anne’s third go-round with breast cancer and had a double mastectomy during her 2nd go-round.  She had her breasts reconstructed and, as she said, “while I was at the plastic surgeon I told him just do the rest of me too!”  Still quoting her, “I got new tits, a new snooter, a new pooter… about the only original part is my mouth and even that’s been plumped up around the edges.”  I told her she should consider doing stand-up and she said she’d be “Paula Dean’ed before the first night was over.”  Anyway, I’m always early for my appointments and so I’ve had lots of chances to chat with her.  Last week when I was having a bit of nausea, she asked if the anti-nausea meds were helping.  They were.  She said in passing, “I have some great nausea meds if you need any.”  I thought that a bit odd but didn’t really think too much about it.  Tonight was her last radiation treatment, and to celebrate she invited me to go to dinner with her and the boyfriend.  I declined mentioning my big move out from Suburban Plaza.

About 8:15pm the doorbell here at my office rings… it’s Anne.  “Wanted to see what you’ve been bitching about.”  Reluctantly I let them in to see my nightmare and she said, “this will help” and pulled out a big fat joint.  Grandma got the ganja!  We were all entertained for a while and I now have a second wind… and maybe I’ll get a pizza delivered.

(13) I don’t have Triskaidekaphobia!

I’m becoming very impatient and emotional as this part of my journey wraps up.  I am grateful for countless things, the least of which is not the decision to double up on treatments.  Doing this for 3 more weeks would make me crazy (crazier). But unlike the brave folks all around me who are also surviving chemo, this has mainly been a psychological strain.

I could say I’ve been lucky, but actually I’ve been very diligent about doing every single thing possible to minimize side effects and maximize the success of my treatment, including jumping up and down on trampoline for 30 minutes every day this week.  I’ve only missed one day going to the gym, I’ve juiced every single day, and I’ve used the remedies for my side effects (skin burn, nausea, swelling) as prescribed and those have been minimal.  I’ve kept my chin up, and I haven’t passed out one time from any of my blood draws.  Yeah me!

In about an hour, I will complete my 13th treatment day.  26 visits and I still don’t glow in the dark.

On the yardstick of problems though, my lymphoma is only occupying about a foot.  I am also removing 15+ years of accumulated “stuff” from my space at Suburban Plaza pretty much by myself.  My dear friends Scott and Ray came by Monday evening and we got about 10% of my office packed.  And because of the rain here, there have been no amigos at Home Depot to hire, so I ended up loading and unloading all those boxes by myself.

I rented an enclosed trailer today so I can move boxes even with the forecasted torrential rains.  I’m pacing myself, resting often, and continuously visualizing August 2013 – no rent payments, no cancer, and a wonderful new space to organize and beautify!

Last word from the Dr. is that tonight will be my last treatment until resumption on Monday morning, July 8.  So wish me luck and send me strength for the big move.  And if you live in ATL and can help out (even a little), please call me.  I’ll try to blog on Monday.

Thanks for checking on me!

(12) A poem I did not write

Worried, half-dressed

They come hobbling into the room,

The inner sanctum.

The smiling bland faces strap them in

The machine, programmed to kill,

Whirls around emitting lethal rays.

Rage and Fear and Loneliness

Are unspoken in this room

Nothing but the buzz of the

Machine as it emits its lethal rays

Don’t move, lie still

Like a corpse on the table

Perhaps practicing for the next scene

No room for love or tenderness here.

Steel and plastic, cold and hard,

Alone with my fears

While the machine moves around me

My thoughts float without reason.

All alone in the room

The machine opens its eye

And emits its lethal rays

I am powerless under its magic force.

All alone in the room

The mantra in my head

KILL the cancer

Let me keep my life.

Author Unkown. Emailed to me by a fellow patient, John from Gainesville, being treated for Stage 4 diffuse large B-cell lymphoma. He finished radiation and chemo last week and is now recuperating back in Florida.

(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.