David’s Blog

Another Loss

Advanced Prostate Cancer, David Emerson, John Arnold, PCa -

I had mentioned John A. here briefly over the last few months. On March 25th the disease finally got the best of him.

He leaves a huge hole in the on-line community and will be greatly missed. He continued to guide us and provide inspiration as he and his wife Jeanne continued to share their experience through the last weeks and days of his journey on earth.

There were a number of tributes and things written about John, I believe my friend Joel did an exemplary job: http://advancedprostatecancer.net/?p=3135

I have no other words to add other than I really hate this disease.

To John:
Hail Mary, full of grace.
Our Lord is with thee.
Blessed art thou among women,
and blessed is the fruit of thy womb,
Jesus.
Holy Mary, Mother of God,
pray for us sinners,
now and at the hour of our death.
Amen.

Good thing I’m not vain

blog -

As you might be able to tell from this picture the trial medication is taking its toll on me.

My hair has pretty much turned white all over but more concerning is my weigh. Over the past two weeks my appetite has gotten worse and that is reflected in the additional 6 pounds I have lost (30 in total).

We spoke to the dietician at KU Cancer Center last Monday and she provided several ideas that we are trying but I fear it may not be enough.

We will continue to work on it with every meal but it’s becoming really difficult for me to eat. Though I return to Boston in a few weeks, we might be talking to them on the phone even sooner.

My friend T

blog -

A friend posted this in his blog the other day.

“Be sure to listen to the rain….it’s like God is playing symphony just for you. I think you’ll find a variety of simple pleasures in it to help you through this”.

He’s a fellow PCa warrior in Seattle! Fight on T, prayers are with you!

From an unexpected source

Advanced Prostate Cancer, David Emerson, XL 184 -

There’s a light at the end of the tunnel;
though, it seems to be fading fast.
And my eyes are fatigued and blurring
. . . yet, my faith tells me I will last.

There’s a train sounding off in the distance;
though, it’s barely a whisper,now.
And my hearing is not what it used to be
. . . yet, I know that it’s there, somehow.

There’s a mountain that looms before me;
there’s a storm driving at my back;
and a river that rages beneath my feet
. . . yet, I’ll weather the worst attack.

For, my spirit will not diminish,
nor my confidence ever grow weak.
I have hope, I have faith and the gift of love
and a world full of dreams to seek.

Wild Willy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I received this poem the other day from a friend, one I would least expect to send a poem.
However, he couldn’t have read my situation any better. The words hit so close to home.
Thanks, this was really special.

The four horseman

blog -

The ‘four horseman’ as I’ve come to call them (fatigue, no appetite, nausea and diarrhea) have reared their ugly heads again over the past week. The appetite is most concerning because when you have no desire to eat, forcing yourself is not an option. The result is I have lost another 5 pounds and at times I am having a hard time finding anything I can eat. Bless my wife for her patience, this is very difficult and stressful on her.

I am going to keep on fighting, at least through my April appointment in Boston. After that we will have to see what options are available and if continuing the trial is still manageable.

There is however a fellow participant in the XL-184 trial that has decided to end his participation. Though his overall bone tumors were significantly less than mine, his scans never showed a real decrease or reaction to the medication. His last scans actually showed a slight increase in tumor size. The results of the scans, coupled with impact of the four horseman on him personally have forced him to seek other treatments.

Like I mentioned, I too might join him come April, we’ll see how things go.

Same ol’ song and dance, my friends

Advanced Prostate Cancer, Boston, David Emerson, XL 184 -
Last week I made my scheduled trip to Boston. I departed Kansas City with a forecast calling for 70 degrees and landed in Boston to a chilly 27 degrees. It was just someone’s way of reminding me that it’s not quite spring!
 
This trip to Boston did not include scans, so it was a roundtrip, one day schedule.  The meeting with the doctor was quick but full of good news.  He had the official Radiologist report from the pharmaceutical company (Exelixis) and they reported the when comparing my baseline scans from August to my most recent scans from late January, the overall reduction in my bone tumors was 95%! Seriously! So refreshing to receive good news! Although managing the side effects of this treatment have been a challenge and definitely impacted our quality of life, we know that ultimately the treatment is combatting the cancer, so it is all good.
This means for now, we just keep headed down this path to see how long we can make this last. For now, I won’t return until mid-April and with that appointment I will have scans again. As long as we see at least stability on those scans, we move forward.
The rest of  the week was up and down emotionally. Our young friend passed away, the funeral was wonderful, but I could not talk to her husband. When I opened my mouth, I just wanted to cry. He said he felt the same way. Fortunatley Mary was there to keep it together. We continue to pray for him and his young son, who is truly an awesome young man.
In additional to that, we continue to pray for one of the long time contributors to the ‘advancedprostatecancer’ group at Yahoo Groups. I mentioned John A. here in my last post. He had a bad few days, but is still going strong.
Thursday night my brother Doug called and asked if he and his wife could come up to visit. It was fun! We watched a lot of college basketball, cooked and ate too much! So enjoyed their company!
The weather this week is calling for over seventy degrees every day! After work walks with Mary will be in order every evening! It is enlightening to have Spring at our door!

What’s on my mind lately

blog -
A few posts ago I asked you to add our friend and former neighbor Jennifer to your prayers. After fighting to the very end, Jennifer went home to heaven today. Things took a turn for the worse last week and this news leaves me very sad for her husband and young son. They are all so young, she was always so happy. Life is unfair sometimes, this is definitely one of those times!
Mary picked up on this the other day and asked if I was internalizing what Jennifer and her family were going through. I answered no, but Jennifer’s difficult journey with cancer along with a few others recently have weighed heavy on my heart. The other two situations that have contributed to my solemn mood are from two gentlemen who are participants on the prostate cancer message boards that I follow. The men are in very late stage, they no longer receive treatment, and choose to spend their remaining days at home with their families while receiving hospice care.  
One man in particular, John A, is sharing his final days in very specific detail. It’s insightful, fascinating, and so eye opening I hang on every written word. I hope you don’t interpret this as morbid. What John writes is beautiful, along with educational. He shares it with those of us that will follow his path someday. I’ve gone over this from time to time the last few years, but without the type of detail John is providing. I just expected a long drawn out painful end in a hospital bed. However, the insight John has provided has completely changed my thoughts on how this whole thing winds down.  It’s with the grace and the caring hands of a certain someone along with those from a good hospice. Additionally, and more importantly, it’s at home, surrounded by friends, family and love.
Please, please don’t interpret this as me throwing in the towel, I’m far from there, there’s a hell of a lot of fight left in me. I just shared this today because it obviously has been on my mind a lot. With the onset of spring I can feel things changing, mostly my mood. I need to get out more and walk. I can’t wait to sleep with the windows open. I anticipate flowers blooming and the trees with leaves. As I say every year at this time, spring is my favorite season.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.

My own little beta test

Advanced Prostate Cancer, David Emerson, Firmagon, PSA, Xgeva, XL 184 -
Monday we visited with my local Oncologist, Dr. V. M PSA was 1,663, that is down 130 points from the previous month. Although we are not screaming from the rooftops, psychologically, we always feel more positive when we see the PSA moving in a downward direction.

Back in January we discussed with Dr. V the fact my Potassium level was low. This is a known side effect from my current long term diarrhea issue. While I was someone who used to eat at least one banana a day, with my current appetite, bananas are off the menu. We have tried coconut water and have now added a prescription Potassium pill to the regime and will test again next month. Just another side effect to add to the list.

Additionally, I received my usual monthly shots of Xgeva (bone strengthener) and Firmagon (testosterone suppressant).With so many variables going on with my case, sometimes it’s hard to track down the cause or correlation of certain side effects. The past two plus weeks I have been relatively pain free. I have not had any Advil and I stopped having to sleep on a heating pad at night. This was not true for the ten days to fourteen days that followed my last shots of Xgeva and Firmagon.

Where I am going with this is I believe that I have figured out the pattern. Starting a few days after receiving these two shots, I begin to have pain. It may start in my shoulders, hips, legs, middle or lower back, but it never starts in the same place. It usual moves around every day or two and like I said above, it will last around ten days. I treat it with Advil every twelve hours or so and sleeping on a heating pad helps considerably. The pain ends rather abruptly, and the second two week period will be closer to normal ~ free of bone pain.

This is all just a theory right now, but over the next few days you can bet I will be very in tune with each little ache and pain.
~~~~~~~~~~~~~~~~~~~~~~~~~~~
After a very mild winter, spring is right around the corner! Our tulips and hyacinth have popped out of the ground. I cannot wait for warmer days. Mary and I went for a walk around the neighborhood on Sunday. It felt great to get out and enjoy the fresh air. This this is something we really plan to continue.

The elephant in the room

blog -

Perhaps the worst of the current side effects I am dealing with is diarrhea. Admittedly a subject no one likes to talk about and I’m sure most of you don’t want to read about.

I’ve been dealing with this for almost two months. Like the other symptoms (fatigue, nausea and loss of appetite), this comes and goes each week. I am never ‘regular’ but have days where I am close to it. However, far out weighing that are days like today where my stomach rumbles all day, and the result is not fun.

It’s a subject I have debated sharing and decided that since I share nearly everything else here, I’d share this as well. It’s really draining me and has got to be the main reason for the weight loss. Week after week of this is becoming grueling. I think I am more aware of the overall impact over the past two weeks because the other symptoms have otherwise been much better. Less fatigue, I gained a few pounds and am eating better. Only slightly, but a little better. These changes have allowed me to go in the office for over a week straight and counting.

Now, if I could just get this other problem under control, life would be grand.

Way back when

blog -
Last week was the anniversary of my original biopsy. While I don’t remember much of the actual procedure, I do remember having to wait a week before I got a call back from the doctor. February 11, 2005 was the day that confirmed I had ‘it’. Though the bone and CT scan that would take place the next week confirmed the extent of the spread, the biopsy was the real start of the horror.
I know I over use this expression, but so much has happened, so much has changed. One thing that hasn’t changed since then was a statement I wrote back on February 11, 2005, 
‘I don’t want to die, this is harder than I even expected, pray for me’.
We settled into a routine years ago, one that provides enough comfort for us to function on a daily basis. It accounts for the peaks and valleys between doctors’ appointments and the other typical things that go on in a family. Last week was slightly better when it comes to the side effects, but I still struggle. There’s plenty of fight left in me all these years later. The bottom line however is I’m still not ready to die. I feel like I have a lot to do. So the feelings of nausea and fatigue just add to the weight  that I bear on a daily basis, and at times have me wondering how much more can I do?

Article Categories

Archives