Friday, February 18, 2011

I have made my decision


So today was the second most important doctors appointment for me.  In the past 3 weeks I have done more tests than I care to, but it has all built on how I made my decision today.  As you know, picking the right doctor is a hard choice.  You do your fact finding, weigh the good and the bad, and decide what is best for you.  This has not been easy, and well I can't have every BEST doctor there is to cure me.  So today, it was clear to me, and I chose to steer my boat full steam ahead.  I knew that if it was time, we would schedule chemo, and get the port installed.  Unfortunately, they couldn't work me in today to do the port install, so my chemo won't start on Monday, but Wednesday.  Yep, that was quick.  But really, why wait.  An awesome doctor passed on information to me to help me be ready for that, in that MY kind of lymphoma is rarely mis-diagnosed the first time.  I also know that it is time to dive in.  For the last 3 days, I have not slept well, have had concern with new pains I thought I was feeling, and well, more and more concern for my shoulder.  While I had medication to help with the pain, it just had a constant nagging pain, and it has made me loose enough sleep.  So lets get to the reason I jumped in full steam.

Today's news has some new items to pay attention to, and will explain why I was extra ready to kick some butt.  Let's start with the PET scan.  This, as many know, is the scan that shows the spots that matter when it comes to how well the chemo is working to wipe out the bad cells.  My right shoulder lit up the charts, imagine that.  From the previous scan's, it was called a hot spot.  My oncologist shared with me that it stood out on the PET scan again, he told me that it was about a 20 on the scale.  So I asked what the low end of the scale was, maybe normal, and well, he said a 2.  Yeah that didn't surprise me, nor was he surprised when I talked about the pain.  I guess I did not do my job to make sure he understood my pain was bad at night last Friday, because the meds I have don't help.  He said he would fix that.  Next up was the lower right side abdomen.  Some new spots showed up and he asked if I had any pain.  Funny thing is, that was one area I wanted to tell him about and he already knew it.  Maybe the other scans did not pick up what a PET scan does, maybe they are new.   But I had questionable pain in that area and well, I was a little concerned, but he beat me to the punch on that one.  Okay, lastly, the left shoulder showed a little activity on the PET scan.  He asked if I had any pain there, and again, that was on my list to discuss with him, and he already knew it.  Now, the left shoulder is in the bone marrow just like the right.  Hopefully that doesn't get bad, but it added to my decision to jump right in.  It's time to start killing the bad cells and getting on the road to recovery.  It only takes one aggressive lymphocyte to go on a rampage, and I don't want that.  I brought up the recent fever and night sweats, even though I knew that was just part of the body fighting all this bad junk, and he confirmed that it was nothing to be alarmed about, and well, it's gonna be common until we kick this lympho's butt.  I got to meet my oncologist's right hand woman, his nurse, and I can tell she keeps him on his toes.  She was on top of everything he said, and had stuff ready to go for me, so I feel pretty good about that team, and decided it was time to stick with him, and that was my decision.  With the added news this time, I think it is time to get started and if I need to re-evaluate, I can always do that.

Okay, so they wanted to get my port installed today, but the schedule was full, so chemo cannot start on Monday.  Tuesday morning I will get my port installed, and Wednesday is my first treatment of chemo.  Wednesday will be a full 8 hours due to the need to administer the drug slowly.  For those who want to know my cocktail, it is a combination of Rituximab (Rituxan), Mitoxantrone (Novantrone), and Fludarabine (Fludara).  There are many things with each drug that has side effects, and won't go into those but the Mitoxantrone is a blue color and it can cause urine, sweat, saliva, and the whites of my eyes to be discolored.  So no reason to be concerned if I have some blue eyes, at least they aren't pink.  :)  That was a joke.  But, I guess I may look a different way, but some of those side effects are normal.

I dropped of 7 prescriptions today at the pharmacy.  Finally I got me some good meds to kill this pain.  But all the others tie into the chemo so I can't wait to get them started next week.  :)

Okay, so thats about that.  I am excited to get this journey started, and without all the wonderful support I don't think I could have made it this far.  Wednesday could be an interesting new beginning, but it is a necessary step.  I will say I am not scared with an honest face.  Your prayers are always the best thing I could ask for.  But as I start chemo, please remember that my immune system will be wacked, and I can easily pick up something that could be trouble for me.   So if you have or been around someone that is ill, they recommended you stay a little further away to help me.  If I am wearing a mask, it's only to help me be out and about but also help protect my system.  I will try to blog a lot, so that time passes fast but also I can give you an idea my ups and downs.  If I am sleeping, I won't have the phone ringer on.  So please don't freak out if I don't answer.  Text messages will be a lot easier for me, so just understand I might not be in the mood to talk.  Don't be afraid to come visit me, but also don't be offended if I am just not up to it.  Hopefully this will be short lived and I won't really need visitors.   Don't be offended if I ask you if you have been around sick ones, or if I wash my hands a lot.  These are things recommended for me to keep healthy, just want you to understand as well.  I might do the Howie fist bump a lot :)

Okay, so thats a wrap.  I am still EXTREMELY MOTIVATED to kick this slight inconvenience's butt. Keep up with my journey here.  If you wish to email me privately, I have created a temporary email account and you can email me there.  I will also answer from that email through this journey.  So if you add to the first words at the top of this post, you will know that address.  Remember, I don't want auto spammers to just get the full email by trolling the web.  If you don't get it, let me know, and I will find a way to call or write you :)

Thanks for ALL of the support.  And iBelieve!!


  1. Make sure you get a POWER PORT---almost always the kind they put in these days but just make sure it is power injectable---comes in handy for future CT scans

  2. I'm really glad that your medical team gave you the answers needed to give you confidence in their ability to help you kick some butt and beat this thing. My extended family and I will continue to pray for you and know that we think of you often. Please don't hesitate to call or email me, if you need anything. Take care buddy!

  3. Rob I'm so glad I can keep updated on you through here. I'm happy your appointment went well and you are content with your choice. Best of luck with next week. I hope it all goes well. You are in my prayers constantly. Your positive attitude and strength amaze me. Remember that JEsus is right next to you throughout this journey, and I'm always here for you!

  4. Just wanted to let you know that you are always in my thoughts and prayers. I'm so proud of you for your strength and courage, Rob. You're so brave and I really adore you for that. So glad you have confidence in your medical team. Love you lots.

  5. blue & yellow make green:) chemo humor

  6. Rob adding you to my prayer list. Praying you will not have pain and your decisions will be the best ones for you to be healthy again.
    Our love to you,
    Cecil and Loretta
    (Lora's Mom and Dad)