XL 184

Mad World

David Emerson, Gary Jules, Mad World, XL 184 -

There’s a song, Mad World by Gary Jules, I believe it’s a re-recording of an old Tears for Fears song. I find it to be a heart wrenching song, but it also is a song that I enjoy dearly. There are a few lines that touch far to close to home:

“And I find it kind of funny,
I find it kind of sad,
The dreams in which I’m dieing,
Are the best I ever had.

http://www.youtube.com/watch?v=4N3N1MlvVc4

There are aspects of my life right now that are perfection, little bits that I cherish. A lot of the rest is just chaotic and frankly tiresome. It will get better, I have faith that it will happen.

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
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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.

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!

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.
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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.

7 year itch, of a different type

Advanced Prostate Cancer, David Emerson, PSA, XL 184 -
Today is the 7th anniversary of my blog. Seven years, almost 700 entries later, and I’m still here.
 
The last line of my first ever post holds more true today than ever:
But I worry about them both emotionally and psychologically. I can’t imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have….. 
 
Physically, the seven years and eight different types of treatment for this disease have taken their toll. Not being able to play disc golf or even work out gets to me. The lack of both make me feel lethargic at times. I want to do more, but can’t in some cases and shouldn’t in others.

A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.

You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
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Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.

Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called “The Mighty” and “The Wonder-Worker” because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

An interesting thing happened on the way…….

Advanced Prostate Cancer, David Emerson, PSA, XL 184 -

Monday was my monthly oncologist appointment here in Kansas City. It went rather well, in fact I’d almost say it went great!

Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions.  The doctor is very compassionate and open to helping us choose the right path.

The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.

I also received an update on my PSA, the last three measures were:
Dec 5:  1,961
Jan 3:    1,317
Jan 30:  1,799

Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!

1961

Advanced Prostate Cancer, David Emerson, PCa, PSA, XL 184 -

First of all, although things are slightly better, my intention to start the year off with a bang and my goal to post multiple blogs has fizzled. I’ll try to get better the year goes on, I promise.

I’d like to start with two prayer requests. There are multiple men I could list but tonight my mind is on Terrance from Seattle and a former neighbor of ours Jennifer. Terence had his 4th chemo infusion this week as well as a blood transfusion. He’s having a rough time, so please find a minute for T.  Jennifer is battling stage IV colo-rectal cancer. She is planning to head to MD Anderson in a few weeks and I hope and pray that she will find a clinical trial that proves to be an effective treatment for her cancer. Again, please include them both in your prayers.

This week I had my monthly Oncologist appointment here in Kansas City. A few of my blood markers are borderline low, potassium was one. Initially, we are going to try to increase the level with diet.Mary already came back from the store with lots of bananas, avocado and coconut water. As bad as my appetite has been, I was happy that more things weren’t out of whack!

Before I break the big news I have to remind you all of a few things: first the clinical trial medicine that I am taking addresses bone tumors. Though they measure my PSA in Boston, the doctor and I don’t discuss it. It is the bone scan that is the key marker.

We knew my PSA would rise because as part of the trial I had to stop taking androgen blockers. It was a risk we were willing take at the time. This week we asked my local Oncologist for my PSA and though Tuesday’s measurement was not ready, my December 5th reading was 1,961. That is up from 1,043 in November and around 400+/- when we started the trial on August 30th.

On one hand, it’s just a number, the scans are what’s important (I tell myself in a semi-convincing manner). On the other hand I think, “Holy Roger Maris! 1,961”! From there the questions begin to mount, questions that I will be discussing with Dr. S when I return to Boston later in the month. Short term, I’m not to worried, what this might mean and how it will impact my treatment long term is what I am concerned with mostly.

Pretty close to normal

Advanced Prostate Cancer, Cabozantinib, David Emerson, FLHW, XL 184 -

For all the issues I’ve been having lately, today, for more than a few hours, normalcy returned to our lives.

It started early this morning when I decided I would hit the disc golf course. No, not to play, just to walk along and visit with some of the guys. It only got better when Mary, for the first time ever, decided to join me. The crowd was light but it was already over forty degrees when we got to the park. I was only able to last until the 11th hole for two reasons; first I didn’t want to overdue it and two, the easiest way out of the woods is after the 11th hole.

We went home, I had a quick 30 minute nap and then it was time to get ready for the matinee show for Trans Siberian Orchestra. Brad, Mary and I had a great time,but it was not at all what we expected. I was expecting something more along the lines of Mannhiem Steamroller, this was more of a rock opera performance, with some seasonal music added in occasionally. The lights and special effects component was very, very impressive.

After the performance, it was off to the Country Club Plaza and our favorite restaurant, Houston’s. When we walked in at 6:30pm there was already a ninety minute wait.! Being seasoned veterans at Houston’s, within five minutes we had seats at the bar and were placing our orders for dinner! The service we received was as good as having our own booth in the dining room.

What a perfect, busy, entertaining, and nearly normal day!

November Review

Advanced Prostate Cancer, Cabozantinib, David Emerson, XL 184 -

After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!

I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn’t notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.

On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.

After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.

With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.

75mg may still be too high, I still have occasional nausea issues. I’ll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.

Happy Holidays everyone, peace be with you all!

When a Buck is worth millions

Advanced Prostate Cancer, black labs, David Emerson, XL 184 -

I’m alone in the house tonight, Mary and Brad are out running errands. I’m not real fond of being alone, in fact, I have grown to detest it. I don’t need a lot of conversation, just the simple presence of others, their nearness makes all the difference in the world.

I should clarify that I am never alone, he is always near to me. In this case, I am not making reference to God but to Buck. Buck is our 95 pound black lab. When we got him  in 2002 I was ‘in between” jobs, so back then I was with him 24×7. He was house broken with in a week. Labs are something else, the finest dog one can own.

This pictures is just a typical moment in my day with Buck. Nose on the bed for a few seconds as he checks to make sure I’m doing OK or if I need anything. He’s so lovable.

Thanks Buck, I’m good right now, I’ll let you know if I need anything.