Day 27 – Home

Wednesday May 29^th 2013

I planned on waking up earlier but the Prednisone that I took last night needed to be balanced by Dr. Ativan which I took too late, so I woke up late.

 

Plans for today are to wait for my Neulasta to be delivered, Go to CVS and straighten out my Prilosec script, get a coffee and continue working at home today. There is a lot of work to do and I’m glad that I can still help instead of being a total loss for the day.

 

The Neulasta came in at 11:20am. Got that in the fridge. It’s lunchtime at work so I’m gonna head to CVS and TCB.

 

Now that I’ve got all that straightened out I can relax and wait. My Neulasta plan changed again because I got released early so I’m going to take the Neulasta at 9PM. I’ll play it safe and take some pain meds before I go to bed even though it’s going to take the Neulasta more than 12 hours to really start to hit. I just want to play it safe and be ahead of the edge of pain in the morning. Then gauge how I feel when I wake up and see if I need anymore, which I probably will.

 

Appetite is going to be a challenge once it hits cause of the discomfort so I’ve got to keep trying to keep sipping water and Gatorade and eating very small bites of food all day so I don’t challenge my stomach. I’ve got meds for that which you better believe I’m going to take. It’s called Zofran. They’ve been giving it to me in the hospital every day whether I needed it or not because it helps counter the chemo drugs and the Prednisone.

 

Tomorrow is going to be an interesting day. So I’m going to sign off for now cause it’s 8pm. I’m going to get my Neulasta ready at 8:30 and stick myself at 9pm. I’ll take my pain meds before I go to bed and see what tomorrow is like.

 

I’ve learned a lot from my first cycle and I know that I’ve successfully made strides during the second one. I hope that carries true for my plan with Neulasta. I’ll be comfortable either way and learn more for cycle 3 either way.

 

I hope that some of this isn’t boring you and that it is in the least educational. Why wouldn’t anyone share this experience so family and friends can have a firsthand account of what is going on. What some of the downfalls are. What some of the strides feel like. What some of the doctors and medical concerns are. What the experience is like as it’s going on instead of hearing about it months later. What state of mind you have to keep yourself in 24-7. There is so much more going on that I still don’t understand because it’s above my understanding and all I get is a test result and I’m told that it’s all good. I wish I could dig that deep and really understand what they know so it can empower me more.

 

Tomorrow could quite possibly be a very painful day that will instill a memory of the other patients in the ward that could barely walk down the halls as I paced passed them at 3mph, even though I complimented them for their efforts and told them that they are the ones that are inspiring me. It will remind me of the fight that family of mine suffered through to do some of the simplest of things like prepare a meal for dinner, laundry, take a shower or struggle with a disability. Being in such a helpless state really makes you think about just how those before endured these treatments and this is an improved treatment. It makes me think about some of the side effects and how strong that I have to be to push through whatever recovery I have to.

 

When you cannot do anything for yourself, anything, and that includes a thought with clarity. You are as helpless as a new born child and you are solely dependent on someone to take care of you through the process. I went through it once with a plan that wasn’t very thought out because I really didn’t know and I had a chip on my shoulder. This time around I hope to share my success story with you. Maybe other people that I don’t know are reading these postings and thinking that this plan might work for them.

 

That’s what it’s all about.

 

Living through an experience such as this and sharing the knowledge that you’ve gained with others that are going through it or facing it in the future.

 

Thanks for reading.

Round 12 – Chemotherapy Cycle 2 Day 5

Tuesday May 28^th, 2013

Well since they increased the ml per hour I should be going home tonight.

 

Last evening went great, no issues with the increase. I slept great and awoke full of energy.

 

I’m expecting to see the Dr. later and also to talk about my discharge later.

I’m still really full from last night’s dinner which I couldn’t finish and I have breakfast coming in an hour.

 

So my plan is to wait until my chemo is done dripping. Then I get a re-hydrated, still gotta get the name of that one. Then I’ll take a shower before the IV tech removes the PICC line and dresses it and then I can go home. It’s looking like it’ll be around 8pmish.

 

Going to walk my first mile before breakfast.

 

I’m working from the hospital today which is awesome because I can help out at work and keep myself occupied at the same time. All I need is an internet connection and I’m good to go, gotta love WiFi.

 

Well the Dr. confirmed everything and I will be going home tonight, just gotta wait for things to run their course.

 

Well, I’m cone with the chemo, showered, PICC is out and dressed, just waiting like 15 more minutes to check if the PICC site bleeds and the dressing holds up. It’s 8:20pm and we’re heading home, pharmacy and going to bed. TTYT!

Round 11 – Chemotherapy Cycle 2 Day 4

Monday May 27^th, 2013
 

I guess I’d like to share with you more about what this chemotherapy is. Some of you have gone through a form of it. Others know someone that has gone through it and the rest of you know little to nothing about it.

So what is it?

For me and my treatment plan they are giving me the following chemo drugs dosages:

Doxorubicin HCL 20mg

Vincristine Sulfate 0.8mg

Etoposide 101mg

Mixed in with 9% saline 500ml

You can read the links to learn more about them because my uneducated explanation won’t do anyone any good. 

My Dr. has told me that I’m on heavy dosages and they want to bump them up, but because some of my counts were low they couldn’t during this cycle.

The effects of these drugs can really help explain the fight within the fight, and not just for me, but for anyone that has to go through this.

One of the first side effects that I went through was losing my hair. One of the others is a slight numbing and tingling feeling in my fingers and I get it in my toes. That is cause by the Vincristine. What it is doing is causing nerve damage. The Dr.’s concern is when it becomes painful and I start to have some clumsiness with my hands or atrophy happening so they can adjust the dosage and plan for a treatment after chemo if it doesn’t resolve itself on its own. Some of these treatments for the side effects might take a few weeks, others months and some I may have to live with for the rest of my life. That’s just the cost of living.

Another side effect that I’m concerned about is heart damage caused by the Doxorubicin. I’ll be getting Echo CT’s that will determine the effects that the drug has had on my heart if any at all.

My Neutrophil question was about learning online that its level could be low because of a low B12. I stopped taking my B12 sups when my lymphnode wasn’t getting any better and didn’t know what the problem was. The Dr. told me that it’s the chemo drugs that are stripping me clean and I didn’t have to worry about taking a B12 sup cause it wouldn’t make a difference and no B deficiencies showed up in my bloods anyway. So for my next cycle I’m hoping that my levels are where they need to be so the Dr.’s can give me the dosages they want. My Neulasta shot will boost my counts back up. Me keeping myself healthy, viral and infection free will help a great deal.

Part of the Dr.s plan is damage control from the side effects of these drugs. I have to be just as mindful as they are because I’m the one that’s needs to provide them feedback as I go along. I’m also the one that has to deal with the side effects until they’re resolved or live with them for the rest of my life.

Another thing I wanted to share with you was the survival ratio. It’s 2-5 years in remission. What that means is my treatments will get rid of the cancer so it’s remised. I continue to see the doctor and have tests done. Over the course of 1 year, 2 years my survival ratio increases. After 3 years, 4 years and 5 years of remission they consider the cancer is gone. If the cancer comes back during the next 2-5 years I go back in for treatment again. In that event my overall health will dictate what treatment plans are available to me.

That’s not even the radiation! I haven’t gotten that far yet. That’s a whole nother world.

My doctors agree that I’m a tough kid, but not because I say or I talk a good game, but because of my body’s response to the treatment. I’m very strong and they are telling me that I can handle more. So I feel like the racecar driver that’s itchin’ to punch it around the track.

I’m not scared by any of this cause I’m so pissed off that this disease dared come into my life after I turned it around. Not that I would want this disease anyway. I could fill the world with guys that can beat the crap out of me. I could fill the world with people that are and will always be smarter than I will ever be. I can fill the world with people that have and will accomplish more in their lives that I ever will. But you won’t find another living breathing thing in this world that will break me down!!!

Sometimes I feel like this is penance for all the wrongs I’ve done in my life, the people that I’ve hurt, they know who they are. If it is I’m man enough to serve my penance. In a religious perspective I’d be correct. With any luck I’ll gain closure from those I’ve hurt. 

These things just happen. Some we have control over and others we don’t. I’m not going to focus on the whys or the why me’s. Sometimes I can't escape those thoughts. There isn’t anything I can do about it except wage war and fight to win, period! I’ll work with my team of doctors on damage control and make the very best out of the outcome.

So, how about a good laugh at my expense after all that, huh?

Today France and I were sitting down ready to eat lunch in my room and being most considerate I got up to blast some gas in the bathroom instead of blasting away at the table. So, I get up, go to the bathroom, but I was so gassy that I blasted a live round in my pants. While I struggled to get my jonnie off I blasted a couple of more live rounds on the floor while I fought to make it to the bowl. 

I look at it this way were all going to crap ourselves twice in our lives. Once because we don’t know any better and another because we can’t control ourselves anymore. So who cares about the in-betweens? There is no shame in this game.

Round 10 – Chemotherapy Cycle 2 Day 3

Sunday May 26^th, 2013

Today has been a great day. My spirit is through the roof, I’ve still got pep in my step, I’ve had some clarity to study and I was even able to have the chemo ml increased to 24.9 ml per hour. That changes my run time from 24 hours to 22 hours per chemo bag.

France was with me most of the day which is awesome! She’s strong enough to trust that I can handle things on my end while she’s at work or running her business, which is by the way bostonhealthnuts.com.

I was told that because the ml per hour was increased that I may be able to go home on Tuesday evening, which of course depends on if an IV tech is available to remove the PICC line in my arm. If not, I wait until Wednesday morning, no big deal.

Team MGH is Awesome!!! The level of care here should be a role model for other cancer treatment centers!

I have some questions for my doctor and I should see him tomorrow and I can tell you the answers about the Neutrophil and some of the chemo drugs that they are using. So I guess you’ll learn as I do as we go along.

Well sorry that there isn’t much going on today so I’m going to do some more studying tonight and give you guys an update tomorrow.

Round 9 - Chemotherapy Cycle 2 Day 2

Saturday May 25^th, 2013

I’m feeling great, eating good, walking my miles and hanging tough.

The Dr. stopped in to say that they are going to increase the drip so it will go faster and they are confident that my body can handle it, so I said bring in on. I also found out that my phosphorus levels were low so I’m getting a medicine called neutra-phos for it. 

I’m going to do some studying today because I have the focus for it which is very important.

I’m winning the constipation battle this time around. I made a few simple adjustments that did the trick.

I’m starting to develop a cough (no phlegm) and a stuffy head with a runny nose. The Dr. will be getting back to me about what I can take for it.

My new Bluetooth came in and it has better microphone sensitivity and I don’t sound like I’m talking in a tube like on my old one.

Team MGH is taking great care of me as well as the other patients in the ward. It’s an honor to be under their care here, it really is.

I’m finding time to study for my exam during my stay, which is also helping me stay focused on my goals and bringing me back on track.

Going to see Dr. Ativan and call it a night.