Post 15 -- Another This Sucks Moment

Not sure how I missed this before, but under the symptoms/side-effects for my R-CHOP chemo treatments, it states that most people regain their full energy levels anywhere from 6 months to a year after their last treatment.

That SUCKS!

My plan/goal is to run in a 5K race on Memorial Day weekend. That's 6 weeks after my last chemo treatment... I thought I'd be back to normal or almost normal levels of energy by then.

I'm not sure I could run a 5K today... I ran 1.2 miles a couple of weeks ago, and it drained me.

However, that is still my goal, and I'll continue my daily exercise program to try and keep my stamina/energy levels up.

I resolve to run in that race... I may not beat my time from last year (secondary goal), but I'll at least finish it.

Post 14 -- Why Me?

Don't ever... EVER ask this question.

You'll never find the answer, and it will only serve to expend time, energy and resolve you'll otherwise need to face whatever situation you are in.

I've learned long ago not to ask that question. Instead, focus on accepting your current situation and develop the resolve to adapt to and then overcome the situation.

I'm proud to admit that I've never once asked myself this question. There is no answer. Things happen... in my case (with this cancer) genetics happened. Chromosomes 14 and 18 are translocated (switched). While this didn't give me the cancer, it made me susceptible to some external environmental factor that did give me this cancer. I wish I knew what the external factor was, so I could tell others to avoid it like the plague, but I don't.

Now, don't get me wrong... I've had a couple of "this sucks" moments, but that's different. They only last long enough to complete the thought/sentence. Then I move on to "what do I need to do to beat this?" or some other positive/constructive course of action.

I dare someone to go through anything adverse and not have a couple "this sucks" moments.

I've told several people the following thought, and I honestly believe this...

Better me, than someone else.

And here are my reasons:

- I have the financial strength to deal with this -- apparently a very good insurance plan.
- I have the physical strength to deal with this -- I'm relatively young and very healthy.
- I have the emotional strength to deal with this -- this is not the first hardship I'd been dealt.
- I have the support strength to deal with this -- all of my friends and family have been and will continue to be supportive of me.

I suppose the moral of this post is to not waste your time and energy wallowing in self-pity... it never helps and more often than not is detrimental in some way.

The second moral is to choose your parents wisely... genetics can be a real bummer. I did not choose wisely. That sucks!

Post 13 -- Test Results and Post Session #3

Sorry for keeping everyone in suspense about the test results.

Things are progressing within an acceptable range. Cancer is still there, but it's definitely getting smaller. I'm not sure what I really expected to hear from the doctor, but I came out of the visit somewhat down. Yes, the cancer is going away, but it's still there. Yes, I realize I'd only had 2 treatments, but I typically try to over-achieve in most everything I do... the fact that I'm not ahead of the typical curve just didn't sit well with me.

Don't get me wrong... I'm not down / depressed / worried... I just like to be ahead of the typical results; that's just my nature.

Came away with 2 prescriptions, and was allowed to stop a 3rd. Oh Joy!

To show you exactly how much of an over-achiever both the wife and I are, the doctor told us he feels like he's speaking with medical school students when he talks with us. We know a good deal about this cancer and I suppose ask detailed questions.

Here is a good suggestion for anybody going through any type of medical treatment that requires visiting a specialist on a regular basis...

Get a notebook, binder, or some other form of paper organizer. Have an area where you write down questions you think of between your visits. Without fail, you will think of something 2 weeks... 2 days... whatever before your next visit. Then when you are actually there, you'll forget to ask. Write the question down, and then when you are with your doctor, you can run through your list of questions. Leave spaces in between your questions to write notes... somethings are complicated or involved. This way you'll have something to reference in the future to remind yourself of everything.

OK, now for the 3rd session results.

For those about to start, or who are going through chemo currently, I will impart some of my observations. Patients will compare cancers... at least on a superficial level. Nobody is looking for the "oh, my cancer is worse than yours" kind of comparison, but just a general how you are doing, and what your treatments are... When you find someone with a similar cancer, you can and will spend long periods of time speaking with them... comparing doctors, symptoms, etc... Being a private person, I don't really do a whole lot of sharing, but I do listen to others.

You'll make (or at least I do) mental notes about other patient's progressions. You'll find yourself happy for someone who is on their last treatment, and sad for those who won't make the next. And the final observation for now... (annoying as heck)... You'll find yourself surrounded by "inspirational" poems and sayings all over the doctor's office and treatment area... It's probably just me, and I'm sure there are some who really like it... but do I really need to have the "Cancer is So Limited" poem 3 times in the same small bathroom... I'm not kidding.. 3 copies of it in the bathroom -- well 2.5 copies. One of the copies on the sink is only half the poem.

Alright - Post Chemo Session #3.

Some have asked, and the answer is yes, the side-effects of chemo are cumulative. Each time is a little worse than the time before. However, understand that you don't feel like crap the entire time between treatments. Each time lasts a little longer than the previous one, and each time is a little worse. I'm not trying to scare you if you are about to start... It's really not going to be as bad as you think it will be. Honest.

One of the side-effects you can expect to get with R-CHOP chemo therapy is a numbness in the tips of your fingers. For me this started a couple of weeks after the first session and has slowly increased over time. I don't really notice the numbness/tingly sensation until I stop and think about it, or when I type (it's surprisingly difficult for me to type for long periods of time).

This time around, too, was the first time the chemo really affected my concentration. For the first 4 days following chemo, I really had a hard time concentrating on things... I would describe it as "tunnel-focus"... like tunnel-vision, where you can only really see straight ahead. With tunnel-focus, it's almost impossible to multi-task and to switch thoughts requires some effort... not huge amounts by any means, but I'm used to being able to multi-task and quickly shift mental gears. Nothing to worry about, as it went away, but something to be aware of.

Unfortunately for me this time around, I got sick -- as in a full body cold type sick. You can't take any of the typical cold remedies or symptom suppressant medications (they'll warn you about this in chemo orientation). They don't want any medications interfering with the chemo drugs. What this means is that you just have to deal with the crap if you do get sick.

Thankfully for me, I didn't get sick right before a treatment. They test your blood and if your counts are too low (not sure how low this cold would have made them), they will not administer your treatment. I'm not sure how long it would take to reschedule for a later day, but I also don't want to find out.

I will be over this cold by the end of the weekend, and will be in good shape for the 4th treatment on February 27th.

Following that treatment, I'll have another round of tests, and more results. By that time, the cancer should be almost completely gone. The 5th and 6th rounds of chemo are to further force the cancer into remission and eradicate any linger cancer cells.

There are other posts/things I want to say, but I am tired (the body cold more than anything), and done typing.

Post 12 -- Follow-up Test

In case I don't get a chance tomorrow or over the weekend...

After every 2 chemo treatments, I will have some tests done, to chart or track the progress I'm making.

Tomorrow I will have a CT Scan done, and then Wednesday 2/4/09, I will get the results when I go visit Dr. Dan again.

I'm not sure exactly what the results will be, but visually things are looking GREAT!

This whole thing started because I had a rather large lump growing right where my neck met my chin/face on the side of my neck. That lump is all but gone. Visually you can't see it any more (it was quite noticeable before). The lymph nodes under my underarms are also gone, along with those in my groin area.

If you feel for the lymph nodes in the various areas, you can still tell they are all a little swollen, but I'm not at all bothered by that. They are decreasing in size, and at quite a dramatic rate -- at least as far as the wife and I are concerned.

I'm sure the results of the scans will show that I still have cancer, but the amount of cancer will be GREATLY decreased, and I'm only 1/3 through my treatments.

At this point, I would say things are VERY POSITIVE!

I'll post results next Wednesday. The next chemo treatment will be Friday (2/6/09).

That's all for now.

Post 11 -- Post-Session 2

OK, rather than trying to cover everything that has transpired since the last post individually, I'll do it all here in one concise post.

EVERYTHING tastes and smells different. Nothing really tastes or smells good for about 1.5 ~ 2 weeks after the chemo, but most things are tolerable. Because of this factor, and the fact that I lost my appetite for over a week following the first treatment, I lost 14 pounds. I have since gained about 5 of that back, despite a 2nd chemo treatment. Understand that I'm just shy of 6'1" and started out weighing 178lbs. the morning of the first treatment. I didn't really need to lose 14 pounds.

Energy level definitely goes down, but so far I'm still able to go to the gym on a somewhat regular basis. Although, I only do 20~25 minutes of vigorous cardio and some ab work. I can, however, tell that my energy level ebs and flows pretty much as described by Dr. Dan.

Following chemo (remember I have 3 weeks between treatments), my energy level isn't all that bad. My appetite is gone, and most of the energy loss I feel is related to the fact that I just don't eat much... then about 8-12 days after the chemo treatment, I can just feel the energy drain. At this point, I'm eating regularly and regular stuff... pretty much anything I want, though greasy food is just NOT appealing (I tended to shy away before, but now the idea is just not good for the tummy). Anyways... 8-12 days after chemo, the energy just drains. I'm 36 years old, and in pretty decent shape. I hate having to admit that I just can't do everything I want to do, but I'm intelligent enough to know that if I push my body, it will push back... eventually, in the end, my body will win.

If you are going through this, listen to your body. Don't push it. Your body is fighting it's own battle inside at this point. Don't work against it as well. Sit down and rest a bit every now and again.

Hair loss. This started for me about 2 weeks after my 1st treatment. Now, for those who don't know me, I kept my hair very short as it was... 3/4" hair would be considered "hippy" for me. I'm not at all worried or concerned about losing my hair... It's just a collection of dead cells anyway (yes, the hair you see on your head and body is made up of completely dead cells). The disconcerting part for me was when I realized it was happening... I just happened to look down at my desk one day, and there lay several dozen pieces of hair.

Ever since that day, I vigorously rub my head every morning and night over my bathroom sink, to get as much out as possible. Hey, it's coming out; there is absolutely nothing you can do to stop it. Why prolong the situation? If you want to cover it up with a hat or wig... fine, whatever you want to do... BUT, why not wear your baldness with dignity? You have cancer... you are going through chemo... screw who ever gives you a sideways glance or sneer? If you see them... confront them, I guarantee they'll feel like crap after, and you'll feel vindicated.

Today, I would say I've lost about 60% of my hair. I just shaved it again last night, and based on what I shaved off vs. what I normally shave off, I think that's a pretty accurate estimate. I will tell you that I had a misconception (at least I think it's a misconception) about chemo and hair loss. I thought that eventually I would wind-up completely bald on my head. This does not appear to be the case. What seems to really happen (and I see this on me and several others I spoke with during chemo), is that there will be a period of time where you will experience hair loss... then the rate of hair loss will decrease, and you will actually start to grow hair again... then the cycle repeats, where you lose hair...

What you wind up with is varying lengths of short-ish hair... eventually every piece of hair will fall out, but you'll have new hair growing in. I think I've just decided to shave before every chemo session... that way the hair I have will be virtually the same length.

One last word on hair... the rate of growth slows... noticeably... This is especially noticeable on facial hair.

Well... that's pretty much it.

- Tired - yep getting there... I'm currently on chemo +9 days, so I'm within the 8-12 days targeted as your low point. After that, things will start to improve daily, until chemo time comes again.

- Spirits - POSITIVE. Yes, I'm lower on the energy scale, but that doesn't equal a non-positive attitude/spirit. I've only really had 2 bad days since being diagnosed... those were the day of the diagnosis, and the day after... In fact all told, I would say it was probably a 24 hour period. And even that 24 hour period wasn't all that bad.

I'm still living my normal life. I still do 90% or more of everything I was doing prior to starting this journey. In my mind, that is an extremely important fact. I am determined to have this adversely affect my life in as little ways as possible.

And to prove that this is NOT going to adversely affect my life, I take delivery on one of these next week -- brand new (though mine is a different color).

Post 10 -- Session 1

12/26/09 -

I arrive at the facility at 8:30am to start the first session. Now during the chemo orientation, we were told the wife would be able to spend the day with me, to help while away the hours -- I'm told to expect 7~8 hours for the first session.

The first thing they present me with, is the waiver. I inform them that I have authorization... it came in at 3pm the other day. OK, no problem. I do, however, spy the dollar amount on the paperwork. $13,400.00. I ask if that is per session, or for all 6. Just the one. I used to think that my health insurance premiums were a little high, and complain about the $25 co-pay. Not any more. Not any more.

Then, we are informed that because this is a specially arranged session with limited space, she will not be able to stay. The wife does not like this, but she accepts it -- after a while. She is, however, permitted to stay while they prep me, and until the actual treatment begins.

They start you out with some Tylenol and a benadyrl drip -- helps with some of the minor pain, and to prevent some of the allergic reactions you may encounter because of the chemo.

So, off the wife goes. Shortly after she leaves, the real fun begins. The nurse comes at me carrying a large bag filled with clear liquid wearing something just short of a hazmat suit. This is not encouraging.

"Should I be concerned?"
"Well, this is the Rituximab. It is very caustic. If it gets on the skin it can burn and damage it."
"And you about to inject with with that?" (I'm not sure the dosage, but it's more than a quart.)
"It's the first of the four."
"OK. Let's go."

The first day went rather slowly. No adverse reactions, and at the end of the session, the nurse was a little surprised that my vein didn't show any signs of damage.

You see, the chemo drugs are toxic, and tend to damage what they come into contact with. Depending on the number of sessions, and combination of chemicals, the medical staff may talk to you about installing a port into your chest... This is basically a direct tap into your blood system, bypassing the veins in your arm. This can and will help lessen the damage done to your veins.

I didn't refuse the port -- in fact, I'd be OK with it, but the doctor thinks with just 6 sessions, and the fact that my veins are "good", I should be OK. The port requires outpatient surgery, and doctors are loath to do surgery if they don't have to.

Post 9 - Insurance Approval Tag

12/24/09 -- Yep Christmas Eve.

Receive a call from the local health system provider (mine), informing me that they haven't received authorization for my chemo yet. I inform them I'll be calling the insurance company immediately. The office close at 3pm today, so they'd need authorization by then.

Hang, and call the insurance company. I'm informed that I am 100% covered for the sessions, only they haven't received a request from the oncologist's office yet. Oh really... OK.

I hang up and call my oncologists office (remember for the PET Scan I told you not to blame the insurance company yet). You see the call that started this all came from some central patient relationship center, and not the doctor's office itself. I'm informed they can't find my file, but will call back in 5 minutes when they locate it.

They call back as promised, and inform me the file hasn't made it to the billing department yet, so no request has been made. I ask if they can process it in a little over 2 hours. Shouldn't be a problem.

You see where this is headed? I'll skip ahead some calls.

14:30 (2:30pm) -- no authorization yet, but Tina informs me she's expecting it any minute now.
14:40pm -- nope, not yet.
14:45pm -- "You have reached Cancer Care... Our offices are closed at this time for the holidays." Are you $%(#@} kidding me?!?! I decide that if I don't hear from Tina by 14:50, I'm paging the on-call doctor.
14:50 -- Tina calls, as I'm about to pick up the phone again. Still nothing. I ask what happens at 3pm? I'm told I can sign a waiver and pay if the insurance company refuses treatment (sound familiar). Now, I was told by the lady at the insurance company I spoke with earlier that I'm covered, but what if some paperwork mix-up occurs, and they refuse treatment because it wasn't pre-authorized... I'd be screwed.

I inform Tina that this is not an option, and ask who'll be staying after 3pm to wait for the call from the insurance company. You see it's not really their (insurance company's) fault, as if I wouldn't have called at 12:50 to point out the fact you (oncologist's office) never made the request to the insurance company, I wouldn't even be this far along.

(crickets... absolute silence...)

"Uh... well, yeah... we wouldn't have even requested authorization today, but the office closes at 3pm, and we all go home."
"Not the right answer. I'll stay on this line, while you use another phone to call them right now, and see what's up."

15:02 - Houston, we have authorization. Thank you Tina, and have a Merry Christmas!