Monthly Archives: May 2014

My Coach and Biggest Fan

I’ve tried and tried to figure out how to start writing this.  I’m finding it difficult to put into words the gratefulness I feel for my coach, my trainer and my biggest fan.  Of course I’m talking about Shelby.  No matter which hurdle I face, she is the one encouraging me to plow right through it.

Sometimes I think it’s worse to be the loved one of someone with an illness than to be the actual patient.  For me, I go into meandShelbysurvivor mode.  I go to my appointments, I do what I’m told by my doctors and I push forward.  The loved ones do all of the worrying; they are the ones with the anxiety about the toll the disease may take.  Mostly they do this with a poker face.  Shelby is no exception to this.  It seems that every time we receive bad news, she makes sure I’m okay while suffering in silence herself.

In case you haven’t met her, here are some of the most interesting facts about my meandshelgirlfriend of five years.  First, she does not tolerate disrespect.  Second, she is always honest.  Shelby is also the hardest worker I have ever come across! Whether it’s working in our yard or doing work for her clients, she does not stop until the job is finished!  She is also an eternal child who likes to tickle and torture me more often than I’d like to admit.

I can name three things that make Shelby truly happy:

1. Cher

2. Perfectly cooked lobster in butter sauce

3. Her nieces Sophia and Emma, and my cousins Shawn and Bryan.

I chose to write about Shelby for my first installment of ‘In My Corner’ because there has been no greater support than her these past few years.  She attends all of my appointments, has driven me home after a long Shelbyday of chemo and makes sure I get plenty of sleep.  She also makes me smile and laugh like no other person has ever done!  And it’s not just with my illness!  She encourages me to do well in school. When I was still in the band she went to all of my shows. And she lets me go for a run when I need to get out.  I’ve never experienced such unconditional love and support.

So thank you, Shelby.  You have been the most incredible, influential person I have ever met!  You inspire me every day to be a better person; for me, for you and for us.  I’m proud of who we are and I’m proud of our relationship.  Thank you being my ear, my rock and my sounding board.

Oh, and I love you….MORE!

 

Category: In my Corner

Starting Imbruvica for CLL

I finally started the latest and greatest medicine for my cancer, CLL – Imbruvica (aka Ibrutinib.  The regimen is to take three pills once daily with a full glass of wimbruvicalogoater.  I’m also instructed to drink extra fluids and take on a regular schedule.  As of today, there is no set amount of time that I’ll be on this – but my script so far is for 6 months.

According to the paperwork that came with the medicine, the biggest side effects are diarrhea, fatigue, headache, loss of appetite and a host of others.  Long term, I run the risk of experiencing low blood counts, excessive bleeding and kidney problems. My chance of also developing skin cancer also rises so I have to stay out of the sun, stay covered and wear an SPF.  Doesn’t my doctor realize it’s summer, dammit!

Now that I have begun, I’ll be getting my blood drawn weekly to monitor my blood counts and organ functions.  I’ll also be getting evaluated in two weeks by my oncologist.  There is no need for another PET scan yet – especially since I have visible effects of the CLL.  Once my lymph nodes go back down, I’ll receive a scan to monitor the activity in my body.

As of today, I’m on Day 5 of Imbruvica and am already having some symptoms.  On Friday (my first day), I experienced terrible fatigue after only a couple of hours.  I even came home from work after a half day and slept almost 6 hours.  After I woke up, I was too tired to go out and was back asleep by 11PM for another 12 hours.10352406_626180524124546_4125485429222510689_n

I also developed some lower right abdomen pain on the first day that has plagued me daily since.  I’m hoping the pain is ovarian since I just started my cycle – but it feels almost like I’ve burnt my side.

The stomach issues have also arisen! My stomach has been churning since Saturday afternoon and have been very uncomfortable.  I haven’t ventured very far from the house these past few days.

As I write this, I have a call into my doctor about upsetstomachboth the abdominal pain and upset stomach.  I would like to be able to take something for it but don’t want to until I get the go-ahead from her.  If possible, I’d like to return to work but will not if I’ll be spending half of the time in the bathroom.

I guess that’s it for now.  I’ll update daily on Cancerboxer’s Facebook page and Twitter feed.  Thank you everybody for your continued support.

 

You can get more information at www.imbruvica.com.

Category: My Fight

In My Corner; My Cancer Support Team

I’d like to use this category as a tribute to those who have helped during this fight.  I normally end each post with a general thank you to everybody but this page will be dedicated to those individually.  It can be strangers, family or an old Facebook friend who sent me an encouraging quote.  I am amazed everyday at the kindness of people and I feel that everyone deserves some acknowledgement.

So, here it goes.  Look for my first post in a few days.

 

 

Category: In my Corner

Round 10, Cancer and chemo TKO

Chemo, Round 10.

Ding, Ding.

I was TKO’d before the round even began.

I’ll start from the beginning.

me with Sophia

Bryan

Baby Bryan

Before I went home for Mother’s Day on Saturday, I felt another lymph node on the left side of my neck.  Shelby felt it, too and we decided that I would bring this up to my doctor at my upcoming appointment.  That Tuesday, I went to the infusion room, had my port accessed and blood drawn by awesome nurse Nicole and headed up to see Dr. Zibelli.  The first thing I told her (besides the formalities, of course) was about the swelling.  As soon as she touched my neck, she felt the growth and immediately stopped the chemo.  She told me that my body has developed a resistance to Ofatumumab so it was no longer working.

The doctor then suggested Imbruvica which is the new chemo pill for CLL.  It was just approved by the FDA this year and is having success in other patients.  I’ll be taking 3 pills once a day.  The major, most common side effects seem to be nausea, low blood counts and excessive bleeding.  There is also a risk of kidney damage among others.  Once I begin this drug, I’ll be getting my blood drawn weekly to monitor my body and hope it is not doing more damage than good.

shawn

Shawn

Now, I’m just waiting for the proper approvals and red tape to be cleared.  My understanding is that this drug is very expensive and it’s not something I can get at my local pharmacy.  There is a company working with my insurance company and the supplier to keep the cost to me limited.  As of now, I’m still waiting on the supplier to see just how much my co-pay will be.

Personally, I feel very disappointed and frustrated.  Just as I am about to move forward, I have to take a step back.  There are many opportunities at work coming up that I do not want to miss.  Shelby and I have also been discussing taking a real vacation (abroad maybe) but again, we have to put our plans on hold…at least until we know what this new drug is going to do to me.

shelbyandsophia

Emma & Shelby

For now, Shelby and I continue to move together and try to stay positive for each other.  We had the girls last night (Emma and Sophia) and I got to see my boys last weekend (Shawn and Bryan).  And hopefully, the weather will dry out so we can get out of the house this weekend.

People continue to amaze with their kindness and affection.  Not only are my friends, family and readers sending constant love, I’m receiving support from total strangers.  Thank you to everybody who continue to send some love, prayers and energy.  I love you.

 

 

Category: My Fight, Uncategorized

My Fight, Round 9

meinCapeMay

Round 9.

Ding, Ding.

Before I begin, I must apologize for not getting to this sooner.  The class that I am currently taking gave me an extensive amount of work the past two weeks including a mid-term, therefore my focus was on school.

On April 15, 2014, I had my 9th Round of Ofatumumab.

Upon arrival to the infusion room, awesome nurse Nicole accessed my port and drew some blood.  I then headed up to see my doctor.  I seems that I have a stubborn lymph node that does not want to go down in swelling.  I can feel it in my neck as did the doctor.  She said to continue my monthly treatments and to follow up chemo with another PET Scan.  If the scan shows any activity, I may begin the new chemotherapy pill Ibrutinib that was just FDA approved and is now available for CLL patients.  I guess we’ll just have to wait and see. My last Ofatumumab treatment is in July.

When returning to the Infusion Room, I had my vitals checked and began chemo.  I tried to study for my midterm but was succumbed to a Benadryl coma shortly after receiving the pill.  And even after I wake up, I’m pretty foggy and tired.  There is no studying or making any decisions.  All I want to do is lay down, eat and occasionally pee.

I don’t normally come out of the Benadryl fog until later in the evening.  Most people are winding down for the night but that is when the steroid kicks in for me.  I get a lot of studying done when I’m up all night.  In fear of waking Shelby, I don’t turn on the TV so I just make my way downstairs and play on the computer or read.  I think I finally fell asleep around 5AM.

My normal day after chemo was complete with laundry being done, grocery shopping and cleaning.  I have so much energy, I can’t sit down.  It was not as hard to focus as when I was getting weekly treatments but I am still somewhat scatterbrained.  I even took my midterm online (they now offer online proctoring.  Isn’t that incredible?!).

The timing of my treatment and Easter weekend worked out this time.  Because my work was closed on Good Friday, Shelby and I were able to get away for her birthday on April 18 to Cape May.  Neither of us had ever been there.  It’s a really cute town but being at the beach in April, it was pretty chilly! We made the best out of it (as we always do) and both enjoyed our getaway.  We needed a little escape…even if it was only for a couple of days.

Now, two weeks later, everything is normal and we are living life.  This past Monday Cher ticket(April 28) we saw Cyndi Lauper and Cher in concert at the Wells Fargo Center in Philadelphia.  They were both incredible, sang live and had crazy energy!  We both loved it!  We are also working everyday and I continue to love my job.  They have been nothing but supportive towards me and I am so thankful for that.

I am also eternally grateful to all of my family, friends and supporters who continue to show their love and encouragement as we stand in the ring.  Hearing your cheers and love during the fight strengthens me, and I will continue to battle until I knock this damn thing out!

Category: My Fight
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