Day 42

Thursday June 13^th, 2013

I had a great day at work today with the exception of losing my cribbage trophy defending my championship. I’ll get it back.

I got a lot to do when I get home so I’m ready for Friday morning. It’s like packing for a mini vacation, but you’re not really going anywhere. Well I’ll tell ya when I’m done with all of this I’m taking a real mini vacation cause I’ll need it.

I’m feeling really good about tomorrow, very excited about the Pet scan results and my blood work. I got some questions ready for my Dr.

The few things that I really want to know are:

1). How long will I be on meds?

2). How long will I need to take Prilosec? (some of the steroids cause heartburn)

3). How long will it take after the chemo is all done to get my immune system back to normal?

4). What tests can be done to check if someone has Lymphoma or is at risk of Lymphoma?

Some of the other tests like the Echo CT will show what effect the treatment has had on my heart. I’m not sure when I go for that test.

By the looks of it I’m halfway through it. If everything goes the way that I’ve been told I’ve got 5 days of chemo left, which I start today followed by 16 days off and then 16 days of radiation bringing the total days left to a whopping 37 days not counting recovery if any, after the radiation.

Well pretty boring stuff, but the next week will be more interesting to read.

See ya tomorrow.

Days 36 - 41

Wednesday June 12^th, 2013

Well, not much has changed in the past week. I still feel great, very strong, focused, been staying active at work and around the house.

Saturday June 8^th was France’s Birthday and I had a Tong Ren class so we nailed 3 birds with 1 stone and went to Sam’s Club for inventory for France’s business. We made my Tong Ren class and had enough time to drive to Providence RI for Waterfire. We had a great evening out and dined at the Cheesecake Factory. Since we arrived later than usual we missed a lot of the attractions, but did get to listen to a great Jazz band play a few songs and walk around the river channel admiring the fire.

We had a very productive Sunday. I got France a Bertha shelf for her birthday. We put that together and restocked the shelves with product that will make operations much more functional for France.

I got the chance to clean out more stuff that I haven’t been able to sell on CL and consolidate a few more boxes. 

Today I have a PET Scan scheduled and I’m excited about the results which I won’t know until Friday when I see my Dr. 

I’m also hoping that all of my levels are where they want them to be so they can up my dosages for this cycle.

After this chemo cycle is over I’ll get my radiation treatment plan hashed out and I can get started on that. My biggest concern with the radiation plan is the scheduling time. I’m not looking forward to losing the opportunity to work through the radiation because I’d have to be there at a time I have no control over. Don’t get me wrong, working from home at times is great, but I want to stay active and for me a big part of that is going from building to building to do my work and talking with people I know along the way. That is a very active part of my day that I will lose if I’m at home. So I still have to wait on that one.

Well that’s it so far. I’ll add more later if anything interesting happens.

Days 28 – 35

Thursday June 6^th, 2013

 

I guess I’m real bad at keeping a chronicle if I can’t keep it updated daily, huh?

Well the Neulasta reaction was delayed by about 36 hours which really threw me for a loop. I was ahead of the pain with my meds and I only felt the effects on mid-Friday into Saturday. Sunday was a strength and recovery day. France and I went out to eat Saturday evening at Dok Bua, one of our favorite Thai Kitchens.

Monday I went to work. I felt great all day. I went to do my weekly blood work after work.

Tuesday I went to work. I felt great most of the day. I started to feel like the Neulasta was recurring, but wasn’t sure.

Wednesday I worked from home. I was having a Neulasta recurrence. It wasn’t as bad as the last recurrence and this time was only in my legs, knees and feet. The tingling feeling from the Vincristine made it impossible at times to put pressure on my feet. I did some stretching to get some circulation going and that made it feel better. I didn’t do the walking that I would have liked to do, but there is only so much you can do when you feel like your body isn’t working with you.

Thursday (today) I went to work. I felt great all day, still do. I made up for my walking today. I’ve been carefully eating at the salad bar at the café at work. Chef Ryan makes up a mean salad to choose from. We eat well at work! We really do!

Tonight I’m going to walk some more and get ready for work tomorrow. It’s been a good week with no real setbacks. I’m staying on top of my viral/bacterial prevention at home and work. I’ve been trying to reduce my risks by sacrificing a lot of my outdoor activities on the weekends. I’ve been careful when we/I go out and bring my prevention gear with me. 

I have an I don’t give a %W&^% attitude toward people that act surprised when I gear up after they sneeze or cough. I’ll ask and wait to use another register so I don’t get the coughy, sneezy person’s change back in my hands. I prefer to go inside to get my morning ham, egg and cheese on an English muffin and coffee just so I can make sure that whoever is making it isn’t touching themselves all over their face or touching dirty things while they’re wearing gloves and making my food.

That’s part of the fight! Being able to say ‘I don’t want that because you wiped your forehead and then touched my food’ anything like that, I just don’t care at this point.

Pretty boring stuff, but I promised that I write about it. I could make stuff up, but I do enough of that with a guy I work with. We are in a 4 month long tandem story that I really should consider writing a sci-fi book about cause it’s that good.

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!