Takin' It To The People

I've received many, many cards and emails with well wishes over the course of these past six months. By far the most entertaining one that showed up was the above. It was made by my uncle Johnny, who is actually quite a craftsman. I've yet to fully interpret the meaning, but it was the only card I got that was handmade! It'll probably end up in a frame and on my wall.

Well, it seems a notification got sent out saying that this blog had been updated even though no changes had actually been made. I've heard from a few people wanting to know what the new news was because they got an email with nothing in it, so I'll give the people what they demand...

I've said before that it was hard to update the blog when I felt bad. It's even harder when I feel fine...and I love it. I'm well on my way to getting back to being a world dominator and it feels great. I did have a small hiccup about a month ago when I found a lump on the inside of my thigh, but it turned out to be just a cyst. How exciting!

The next step is to get my mediport out and that will be taking place on November 8th. I check in at 6am and get the sucker yanked out at 8am. It took less that 30 minutes to put in, so I'm guessing I'll be home in time to watch all of my favorite midday court room shows on Fox (Divorce Court from 9-10, Judge Joe Brown from 10-11, Judge Mathis from 11-12, The People's Court from 12-1, Christina's Court from 1-2 and Judge Alex from 2-3). After that, I'll get my first PET scan check up on November 19th, which should be a fun-filled way to kick off Thanksgiving week.

I'll post again after the mediport disappears from my chest. There will no doubt be more pictures of me in a hair net making the rounds to share at that point.

Certainly Certified

Look Out! Radioactive Man!

The past month has held both the good and the bad, but as we all know...you take the good, you take the bad, you take them both and there you have the facts of life.

The last chemo just plain sucked. The only saving grace was that it was my LAST one. I managed to upchuck three times during it, which is the first time I had that problem during treatment. Anyway, I'm glad the hard part is over early. Another four chemo treatments might have really affected my football watching this fall.

The second phase of my treatment began on July 25th when I had my first radiation blast. I receive radiation on a daily basis Monday-Friday at 8:15am for a total of 17 sessions. That wraps me up on August 16th. After that I'll have one more minor procedure to take out the mediport in my chest and then I won't see doctors again until mid-November when I get a PET scan. I'll continue to get PET scans about every six months for the next five years. Assuming I'm clean at that point, I won't have to do any more follow-ups.

Getting the radiation is a breeze compared to chemo. I'm not even at the CTRC long enough to have to pay for parking and the only suffering I've been through was when I forced to listen to Michael McDonald anger my blood with Ain't No Mountain High Enough while I was helplessly strapped down to the table. It's very similar to getting an x-ray and is painless. I lay down on a table, two people lock a hard mask down on my head, they align me with the machine, they leave the room, the machine buzzes, rotates, buzzes again, the people come back in, they unmask me and then I get up and leave.

The only downer has been some slightly irritating side effects regarding my throat. After treatment #8 it became painful to eat due to the inner lining of my esophagus eroding. Since then I have switched to a lot of soups and mushy-esque foods. It's not too bad though since it's helping me drop some pounds. Also, the radiation makes me tired. I haven't gone to sleep at 9:00pm on such a regular basis since I got grounded two years ago for ruining my own Halloween party.

One last note. After the last two chemo treatments it was very difficult to see, smell or taste anything that reminded me of the CTRC and getting treatment. Even things on the car ride set me off. This blog fell smack into that category as well which is why I haven't updated in so long. Just looking or thinking about it put me in a place I did not want to be. Thankfully most of that has gone away and the road to recovery is much shorter now.

Getting Better

The PET scan I took on Monday came back completely clear which means most of the cancer is gone. To make sure it gets the "Finish Him!" treatment I have two more chemo sessions (one after today) and then I will switch to 4-6 weeks of radiation. It should be much easier than chemo and will consist of getting a "laser" shot at my neck 5 times a week for 10-15 minutes. Throat swelling will be the side effect, but that's a trade-off I'm more than willing to make.

The Summer of John

The Good: I'm halfway through.

The Bad: The aftermath from #6 has been rougher than most.

The Ugly: I've spent so much time on the couch there's a Homer-esque indentation that spans the length.

Seriously, I feel like George after the Yankees blew him out when all he did for the summer was sit in his recliner, eat, watch TV and repeat. I even noticed some lack of leg strength today when I arose to make the mighty hike from the couch to the kitchen for yet another H2O infusion. The hair follicle count is beginning to match up too, but I can't complain about that because it has held out way longer than expected. Needless to say I haven't been spending much time on my feet the past week and I'm pretty sure "Christine" means "Bringer of Whatever John Asks for" in some type of Indian (feathers not dots) dialect.

Tuesday night finds me having sat upright most of the day and able to walk up a whole 10 stairs without having my heart pounding for 10 minutes afterwards. It's wild how much the chemo poisons me, but as I've said all along, the week I feel good is enough to make me forget how much I felt like crap. It's get me through. Well, that and NBA Championship rings (coming this November).

In the meantime I get to catch up on my TV (the Wonder Years is on ION twice a night people!) and stay out of the South Texas summer heat. Hopefully I'll be back scaling mountains and having late nights again with all of you real Topeka people in the fall.

Chemo #6, Christine's perspective

Well, that wasn't wonderful, but to be fair it wasn't horrible either. We had a new nurse, Cindy. She seemed very competent and nice enough, but she wasn't Rosie. Sigh. Rosie was super wonderful and made us all feel better through the last 5 chemos. She switched locations to be closer to home and is no longer with the CTRC. Anyway, Cindy's been a chemo nurse for 24 years and I'm sure we're in good hands.

Our appointment was for 9, but John didn't get his first chemo drugs until 11:45. He, and the rest of us, were very antsy. He was all hooked up with no drugs to put in the port. Apparently the chemo room has 23 chairs but only one hood to mix chemicals under. Which means the poor pharmacist can only go one patient at a time. We have the first time slot of the day, and since we were so late the afternoon patients were VERY backed up. Susan said the waiting room was standing room only. Susan packed good sandwiches and we had lots of snacks. Food makes things more bearable .

John had a rough time today. Because of the late start, there was a HUGE lag between his Emend (anti nausea meds to be taken an hour before chemo) and when he actually got the drip started. He looked bad from the beginning of treatment and halfway through he put away the laptop, pushed the seat back and tried to sleep. Cindy the Nurse said that the treatments begin to hit harder around #6. He seemed to be very nauseous but refused meds to help. What didn't help was the poor gentleman who walked in the clinic and immediately started vomiting. His IV wasn't even hooked up! He, not surprisingly, continued to yak off and on throughout his treatment. I felt bad for him but I also felt bad for the rest of us who were listening to him. The nurse didn't blink, she said that's what he does.

John got home and went straight to bed. I hope he sleeps off some of the "ick" and feels good enough to watch the Spurs game tonight. Traditionally Thursday and Friday aren't that bad, however, I think it might be a little rougher this time. His WBC count was low (I think 3.3) and he had a Neulesta shot to make new white blood cells grow. That usually equals miserable headache and a miserable weekend for John. We'll just wait and see. GO SPURS GO

Five Alive

I am exhausted today. The Spurs kept me at work until after 3:00am and we got to the CTRC about 8:45am for chemo. It was close to a 16 hour work day followed up by little sleep so if none of this makes any sense I apologize.

Encouraging news from the doc today. She says that if my next PET scan is clear, I will stop chemo and switch to radiation. The scan will happen the last week in June. I don't want to get my hopes up just yet, but that possibility does brighten my day.

I'm in right now for treatment #5, which leaves some deadtime between treatments to talk about. The pattern that had begun to develop is feel decent on Thursday and Friday and then bad on Saturday and Sunday. Monday I begin to feel better and Tuesday is usually the first day that I make an office appearance. Wednesday I declare my "Game Night" worthy and then I feel good for a week which is just enough time to forget that I ever felt bad. Through all of it though I still manage to stuff my face with a considerable amount of food.

Four On The Floor

I'm back home and resting after having treatment #4. This session has gone way too easy so far and I'm waiting for the other shoe to drop.

Some of my white blood cells counts were down, which meant I got another Nuelasta shot. That really killed my sleep that last time I got it, but I fear no more since Ambien CR came into my life.

More to come later.

And We're Back

With my livelihood directly tied to the NBA playoffs, I become a busy man this time of year. That combined with times I don't feel well leave me booked and spent. Hence the lack of posts (you can probably throw in a touch of lazy as well). Christine also has the keys to this bad boy, so I am going to lean on her more to e-blast my condition when I am laying on the couch insisting that we might as well be living on the sun if we are going to keep the house at 72 degrees (I get warm post-chemo) and telling her not to ask me questions because it hurts to think. Needless to say, she puts up with a lot and will probably end up with a piece of jewelry of her choosing at the end of all of this.

The good news is that the last chemo treatment (#3 of 12) went better than #2. I didn't feel nearly as bad, but I did get to have my first crack at aversions. Little things would make me me shudder and get somewhat nauseous. Soap, my cell phone, water, the couch and a few other things weren't enjoyable for a few days. Also, for a little over a week everything I ate tasted like it had a spoon full of dirt mixed in. I'm still looking for the Mary Poppins song about that one.

I get to do it all over again May 17th. On the bright side, I do appreciate feeling well much more than I ever have. That usually comes about five days after my treatments. By "well" I mean how I felt before I had any of this going on minus a little energy.

FUN FACTS

I still have most of my hair. It's definitely thinning, but has yet to come out in giant clumps.

My sleeping woes are over thanks to Ambien CR. It's awesome.

The steroids (anti-nausea drugs) are still helping me find lost weight. My goal is to work out four times before my next treatment (May 31).

I Got Better

Having a bad cold and getting chemotherapy at the same time did not do me well. Saturday and Sunday I spent my time horizontal except for restroom trips due to a blinding headache on top of being extremely snotty. My head was pounding to the point that I couldn't effectivly make decisions for myself and thankfully Christine stepped in and called the doctor Sunday afternoon. The doc recommended that I stop taking the anti-biotic I was on (Cipro) which was waaaaay too strong and making me feel extra crappy and take 800mg of Advil ever six hours to help break the headache. That combo left me able to sit up on Monday and Tuesday and helped my headache back off from driving spikes to a dull throb.



Through all of this I'm also dealing with side effects from chemo and the Neulasta (white blood cell builder) shot I received, the worst of which was insomnia. Normally my plan of attack when I get sick to take enough drugs to put me in a light coma and arise when I feel better. This time it failed me. I was unable to sleep for more than 1-2 hours at a time and the sleep I was getting was very light. I would wake up at the drop of a hat or litterally the chirp of a bird.

As an added bonus, I was hot (also a chemo side effect). Even with the air cranked way down I couldn't get comfortable. My skin was even red. Once again Christine made a call to the doctor and this time it was recommended that I take some Benadryl to knock me out. Unfortunately it didn't work. So I took a Tylenol w/Codeine hoping that would crush me into a dream world of magic. Unfortunately that didn't work either. I was stuck in a waking world full of crappy TV and ended up watching a biography on American Idol's Randy Jackson. Look at what I have become!

Eventually most of the the drugs started leaving my body and on Wednesday night I got a solid five hour block of sleep. Most of the side effects are disminished and all I am left with now is snot. That's a double bonus though because I always need plenty of Puffs on hand for the NFL Draft.

I Am Completely Miserable San Antonio

First things first. I'm pretty sure I don't have strep. That means my finger pointing moves from Banksy (I'll make it up to you with a trip to Fire Bowl) squarely onto my wife. Mrs. Robbins obviously drug a head cold home from one (or more likely all) of her 170 seventh graders and now I get to enjoy the gift that keeps on giving. It wouldn't be so bad if I hadn't just received treatment, but for now it's kicking my butt. I spent most of the afternoon laying on the couch with a pack of ice on my head (click the picture on the right for a full view).

Everything else seems to be going OK though. I haven't had any nausea issues and the hunger pangs I had after the first round aren't nearly as severe. One thing I forgot to mention is that a few of the fingertips on my left hand have gone a bit numb in the past week or two. Mainly my thumb and forefinger. It hasn't affected anything (read: video gaming), but it does feel strange at times.

Thanks go out to Nicole for baking and hand delivering an awesome cake for me and Christine (pics of that on request).

Second Verse Same As The First

Things did not start off so great entering the ring before round 2. The night before I was scheduled to come in I developed sinus drainage and a sore throat. My immediate worry was that I caught the strep throat that is floating around the office in the cube next to me...(Daniel Banks I'm looking in your direction). Hopefully it's just some allergy that got kicked up while I was cutting the grass on Wednesday. Either way, I am now taking some antibiotics.

The chemo treatment room was pretty empty when I was ushered in just after 9am. There wasn't near as much waiting for a chair, or just waiting in general, this time around. I got to pick the same chair I was in last time and had the same nurse as last time (Rosie) which relaxed me. Doing the treatment in the morning will probably be my preferred method for the rest of the time. Everything ran quicker.

Over the course of my couple hours there the room began to fill up again with mostly elderly people. I find that many of them see me and say "You're so young!" I'm not quite sure how to take that yet. I don't know if they mean, "It's so sad that you're young and have cancer," or "You're so young and you won't having any problem getting past this."

The entire session I was tired. More groggy than tired actually. I don't remember it being quite like this last time, but I also did it after a good night's sleep and in the afternoon.

I'm home now and ready for a nap.

A Week Later

(I started this post on Friday, but didn't make it until Monday night.)

They say the effects from every chemo treatment could be different, but I learned an important lesson after my first session that will carry over through the next six months.

Rest.

The night I came home (Thursday, 4/5) I felt fine and even managed to catch up on some work after a brief nap. The next day I expected to wake up feeling horrible, but didn't. I didn't feel completely normal, but I also didn't feel like I needed to sit at home and rest. It's hard to explain, but I wasn't really displaying the side effects of the chemo treatment so I spent the afternoon at the office. Saturday was the same way, so I worked the game that night and then I went to do my radio show Sunday morning. Sunday afternoon I could hardly move. I didn't feel sick, but my stamina was less than zero. Even laying around on the couch was tiring. Monday I made an appearance in the office and then spent Tuesday and Wednesday working from home. Wednesday afternoon I finally felt 'normal' again. I still tire out quicker than normal, but I imagine that won't go away until the end of the year.

The bottom line is whether I feels like or not, I need to rest in the first couple of days after chemo.

NOTES

Within 24hrs after treatment #1 my swollen lymph node and body itchiness went away. They came back, but for a few days it was nice to see how quick the medicine works.

For about three days I shoveled everything I could into my mouth. The consensus is that the Decadron from my anti-nausea regimen made me a hungry hungry hippo.

The actual process of getting a chemo treatment was painless.

I still have my hair, but I am seeing a few extra strands lying around recently.

My PET scan from a couple of weeks ago confirmed that I am in stage two. It also showed an enlarged spleen, but it was within the limits of normal and was not believed to be involved with the cancer.

Email Updates

Obviously the service I have been using to automatically send out emails when I make a post is not very good. I have found a better one that appears to be a vast improvement. The old one should continue to work, but after reading this post from the guy who runs feedwhip, I doubt it will last long. The new one is also very easy to sign up for...

Email:

Also, for those of you that know what RSS is here is my feed...

http://johnshealthupdates.blogspot.com/feeds/posts/default?alt=rss

Chemo Uno

Of course I'm running late on my first day of treatment. I can't find my wireless AirCard which is really going to hinder my ability to coordinate things on the internet and I don't want to leave home without it. My plan for passing the time is to work while I get pumped full of drugs. Eventually I call off my search and hop into a waiting car filled with my wife and parents. We make a hasty trip to the Cancer Thearpy & Research Center (CTRC) and arrive just in time for my 10:40 appointment to begin chemotherapy.

I check-in on the third floor, we wait for about 15 minutes before my name is called. The whole crew uproots their things and heads out of the main waiting room only to be told that I am just getting my vitals done (blood pressure and tempature) and to hit up the waiting room again. I rejoin them in about two minutes for about 20 minutes of waiting before seeing the doctor (Thursdays are busy). Dr. Amy Lang then briefly goes over some information with us and leaves to go to the pharmacy to begin to get my drugs. After that I wait almost an hour before getting a chair in the treatment room. It was almost like having to wait behind the velet rope at Studio Chemo.

The treatment room at the CTRC is one large room filled by about 25 stations that include a recliner on wheels with table tops on both sides, a trashcan and a TV screen on a swivel arm. It is on the 3rd floor of the CTRC and has an entire wall of windows that look northwest out into the hill country. It's a decent and warming view.

Today most of the chairs are filled with women. I see no one that I would categorize as being in my age group. Along for the ride are Christine, my mom and my dad. We are only allowed two visitors at a time in the treatment room, so my mom and dad are rotating periodically between the treatment room and the waiting room outside, but as the days goes on and treatments end, there ends up being plenty of space for everyone.

Once in the treatment room and comfortably in a chair, a nurse begins the process by spreading some requested lydocaine gel (props to Big Kev truthing the gel!) right on the spot of my medi-port insertion to numb the skin for the hook-up to the IV. The incision from the medi-port insertion is still a bit tender since it's barely a week old and very gunky from steri-strip residue. The gel is left on for about 10 minutes and then I get my connector piece (a Huber needle) put into the port. I literally didn't feel a thing. After that comes some saline to flush it out.

There is a break in the action for a few minutes before I get my first bag of drugs. Christine wisely obliges my whim and spends the free moments snapping off a few pics of me and my surroundings. So far so good.

I'm now ready for the first drip to start. Just waiting for the bag to show up. It does and we begin.

My chemo protocol (ABVD) kicks-off with the anti-nausea medication: Zofran (32mg), Decadron (10mg) and Ativan (1.0mg). These drugs make me sleepy and almost feeling drunk. It goes down very easy though. The sleepy feeling stays with me for the entire chemo session.

Next up is Adriamycin (58mg). Also known as the Red Devil and Doxorubicin, this is the one that will make my hair fall out and my urine red for a couple of days after treatment (pics to come!).

My third bag is Bleomycin (23 units), my fourth Vinblastine (14mg) and my fifth and final bag is Dacarbazine (880mg) known as DTIC or the "Big Bag", finishes me off.

The time actually passes quickly. Most of it I spend creating this post. My mom made a special trip to my office to get my required wireless AirCard so I even got a decent amount of work done later in the afternoon. Thanks mom!

It all wrapped up by 5pm and was extremely easy. Now all I have to worry about are they after effects!

Medi-Port Insertion

Tuesday I spent the afternoon at Methodist Hospital getting my medi-port inserted into my chest. Most of the time was spent waiting for a surgery room to open up. Once it did, I was in and out in 30 minutes...so I'm told. I was knocked out with whatever wonderful drugs they gave me so I didn't have to do the biting the stick routine again. I was home and catching up on work by 7:00pm. I credit Dr. Joe Johnston for a superb job.

Wednesday was spent with half of my chest quite sore and shaved, but it's worth it because this will make things much easier when I get chemo. The IV will just be plugged into my medi-port which in turn is already connected to a large vein. The port is actually just beneath my skin and the area will be numbed before I get hooked up during chemotherapy.

Getting Started

First off, let me thank everyone that has offered help to me and Christine. Honestly, I don't even know what to ask for right now, but I am sure things will crop up and I am extremely thankful for the outpouring of support thus far. Everything is moving extremely fast right now, which is mostly a blessing because the quicker I can get treatment the quicker I can get better. At the same time life has been warped into a hectic pace and we are still adjusting. We think the easiest method of giving everyone updates will be right here instead of tying up the phone for hours on end anytime there is new info.

The initial diagnosis is stage 2 Hodgkin's Lymphoma, which means I have more than one swollen lymphnode in me. The ones I know about are two in my neck and two in my chest. The pathology report from my biopsy isn't fully complete yet, so there is a small possibility that it could change, but that isn't likely. For those who don't know much about Hodgkin's Disease click here. This is what I will be going up against for at least the next six months.

As of Tuesday, March 20th I had an oncologist. Dr. Amy Lang (more info) will be leading me through my treatment at the Cancer Therapy & Research Center (more info), which will be 12 rounds of chemotherapy (more info) beginning Thursday, April 5th and lasting for the next six months.

On Friday, March 23rd I had a PET scan (more info) which should show where else the cancer is in me. Also, I have already had a bone marrow biopsy to help nail down the stage and results from that should be back within two weeks. I will also be having a Port-a-Cath (more info) inserted into my chest on Tuesday, March 27th to make it easier to hook-up with the chemo IV over the next six months.

The good news is that so far I haven't experienced any of the other symptoms such as fevers, weight loss, fatigue, or night sweats. Hopefully it will stay that way until I get my first round of chemotherapy which I am told will immediately begin to shrink my swollen lymphnodes and take away my itchiness.

That's everything for now. I'm sure I forgot something though and Christine will remind me and I'll have to update this post again!