Blogging in B Minor

I know it’s been a while since Mark’s last post and we wanted to keep everyone up to date on his status. 

Mark was discharged from the hospital on July 2nd and we are all making adjustments to a new routine. 

As Mark mentioned in one of his earlier posts, after a lot of thought and prayer, we made the decision to retain at-home hospice services.  With the last MRI report revealing more new lesions and enhancement in such a short span of time, it made the decision to utilize hospice a little bit easier.  

Mark’s stability has been a growing concern in that the use of a cane was not giving him enough support.  He is now using a wheelchair to help him get around the home safely.  We are fairly home-bound due to his mobility issues, along with the tumor progression and how that limits him.  However, we have been enjoying friends and family visiting, helping and loving on us through this challenge.  His parents, who spend their summers in Oregon, have been here the last several weeks and plan to stay on as they offer tremendous support to not just Mark, but to our entire family.  In addition, Mark’s daughter Lauren, who lives in Southern California, was able to take a leave of absence from her job and has been staying with us, helping with Mark and the boys, running countless errands, doing lots of household chores and saying yes to every favor we ask of her! 

While we wouldn’t have wished for this journey ourselves, the outpouring of support from loved ones, family, friends, and even people who barely know us have comforted us beyond words, providing critical reminders that we are not alone on this path.  No, it isn’t what we would’ve chosen, but coming to a place of acceptance and the peace that brings with it is an immense blessing I couldn’t have foreseen.   

We can’t thank all of you enough for your continuous love, support and prayers. 

All our love,

Rachael (on behalf of Mark)

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Well!, we made the move to palliative care beginning this week so visiitiing is limited and will be coordinated w/my wife. If you know Rachael just call or Email. I will have other contact info here soon.

Medically, I’m very comfortable!! I had a seizure abd apparatently the left side of my body was as firm as a board – a seizure, Enjoying family and friends!!

Her’s to life!!!

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Long time no blog post! Well, I’ve been busy with more challenges so I’m going to do my best to share the latest developments regarding my recent health setbacks. I may not have correct dates, etc. correct but they aren’t important and my apologies if some of the info is redundant with the content in a few previous posts but I’m winging it.

I fell at home on Tuesday the 15th and really smacked one of my ribs pretty good as they hit the edge of the desk in our home office. I’ve been experiencing some staggering and other issues that can all be traced to tumor growth, brain swelling and new started having some slurred speech too which has gotten much better now that I’ve started steroids to reduce brain swelling. This MRI showed growth and brain swelling (edema)

I had another MRI last Sunday, June 28th. (just 11 days from the previous scan).

The report was difficult to read – once was enough. Four new lesions were discovered. This has led us to a decision to stop treatment and bring in hospice. My life has evolved into what would now be futile attempts to treat a disease that has run its course into a life. Many of my days have been spent, lately, in PT, hospitals, labs, etc

My body and prayer is telling me the fight is done and its time to shed myself in of this fight after three years, 12 or so rounds of chemo , the experimental DCVax treatment that gave me 10 months of recurrence-free living, 2 brain surgeries, multiple recurrence 2 gamma knife treatments, etc.

It’s been a tough 3 years – options have run out but I’m ok and am at peace with my entire situation. It’s run its course. It’s time to just be comfortable.

The fact is, I’m going to heaven soon where there is no pain, sorrow or grief- only perfection, only eternal joy, happiness and as my son Aidan said the other night I will be able to do things like throw the ball to Dakota, our black lab we had to put down a few years ago. Oh and he wanted to know if I’d leave iPhone behind for him. LOL!!!

From a medical standpoint, I certainly will not look back with any regret that I didn’t seek out and utilize all treatments that God has made available to man. The only treatments I steered away from were those that would result in complete paralysis of the left side of my body or harsh chemotherapy treatments, waste away and my appearance so drastically that I would be a shell of myself. I didn’t want my kids to witness that nor was I willing to beat my body up like this. It’s a very personal decision.

From a medical perspective my doctors projection say 2-4 months but only the Lord knows. Stats are stats – I’ve written about how aggressive this disease can be.

The boys are very resilient. I’ve had some difficult discussions w/Aidan lately, but he seems to have an understanding of where I will be, which is an immense comfort.

Ok I get emotional just writing. Discharged today! Can’t wait!

One day at at at time… enjoying my family each and every day and praying that the kids and Rachael will be given the strength and peace to walk through the final steps of this journey knowing that they have the love of af of God and that for Rachael that she isn’t distracted with future issues such as finances, getting along later, impact on the kids. etc. These things will all come together.

Hebrews 11:1

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Sometimes during this battle, you can hit snags. I’ve hit a few lately

To summarize, I had not been feeling well the week of June 7th. As the week wore on I wasn’t able to keep food and medication down. Finally on Tuesday the 18th after trying to hydrate and eat bland foods for a week, Rachael and I decided that heading to the ER was the best course of action.

I was admitted into the Oncology Unit dydrated, a low white cell count and Keystones found in the UA. Not good. I was in until Thursday. I developed severe shoulder pain – I believe aasociated with the hemiparesis on my left side. I can deal with that. Great! I’ve had 3-4 good meals. I’m holding meals, fluids have been pumped in via IV and I’m doing ok so I’m discharged Thursday late afternoon.

Thursday night at home was difficult sleeping. My left arm was extrememely uncomfortable due to the same pain. When I awoke Friday my left hand was so swollen it looked round and like a baseball. We knew this wasn’t a good sign so we called the oncology unit and sure enough they recommended returning to the ER because of the risk of blood clots forming. So back to the ER! 4 hours and an ultrasound on my left hand/arm later I was back at home. The ultrasound showed no evidence of clotting anywhere and blood work showed my kidneys were fine. Back home and sleeping ok with some pain management in place

So that is the week and I’m trying to stick with the plan. This snag is done.

Today is a new day.

More to come. Need to get back on back on Chemo.

More to come…

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I completely forgot to provide an update regarding my MRI! It was good news. No new lesions and the areas that were enhancing in the last two scans have diminished in this scan. Everything else is stable. Less mass effect (swelling). I also haven’t had any seizures for the past several weeks.

Aside from severe shoulder pain due to left-side weakness and the typical Temodar quirks I’m doing ok. I just think the cumulative effects of radiation (which includes the two gamma knife treatments that boosted my original dose of 60Gy of radiation by 22 Gy and 16Gy respectively) have just caught up to me a bit – radiation recall as it were but I am blessed. I am 3 years out from my diagnosis and for that I am grateful

Sometimes I think we all just get immersed in treatment to a deeper degree out of necessity. For me those deeper dives if you will are difficult when they come in sucession as they have over the past few months. I know for you other survivors reading you can relate to this and “get it”.

I also know that, for the most part, dark clouds clear in time and the sun breaks through again. It may be brief but it might just be enough at that time to keep me rolling.

To those I haven’t been able to get back with yet, I’m sorry! Especially Ben!! I will be in touch.

God bless,

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On a lighter note, Keegan and I snuck into a State Dinner a few nights ago. He told me that between “Monkey” and “Lion” he’d have no problem lobbying against some of the hard-core special interests represented in the room. He was right. Monkey did a good job with healthcare and we should be seeing some changes that the people want.

Here we are:

Keegan and Dad at State Dinner

Sorry I haven’t posted for awhile! The last two weeks of our lives have just been extremely busy and heavy. I’m having a hard time getting back with close friends, let alone emailing, etc. I had a lunch yesterday with a very good friend of mine, Jake Larson, and I really just forced myself (Jake, great to see you – it was a chemo morning!) because we had been playing phone tag for 3 weeks.

My life has become much more focused on treatment since I started declining more – mainly the progressive pain, weakness and loss of use of my left left side. This is an area of a cancer survivor’s life that needs constant adjustment I have learned. How to balance being in appts all the time vs time for me, my kids and family, etc. Right now I’ve had so much treatment and appts it’s out of whack.

Tomorrow I will have an Avastin infusion and then I’m meeting a neurologist about the boyox injections in my arm/shoulder. I also started round 2 (volume 2 since I did this before for a year?!) of Temodar on Monday night.

More later,

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Sorry I haven’t posted for a while. This has been one of the most difficult weeks we’ve had in a long time. As you may have seen by my prayer request, Rachael threw her back out last Friday. She has slowly gotten better but is just now starting to get back into the swing of things.

Thank God for family and friends. I have said time and time again that at the end of the day what really matters is family and friends. Have you ever really stopped to think about what truly matters in life? Certainly after a diagnosis like this I have had many questions including what really matters. Frankly, we don’t need all the things we have. We are blessed to have a nice home, transportation, food to feed our family, good schools and other essentials that many people in the world just do not have. I still remember when Pastor Rick Warren at Saddleback church in Southern California said “if you have a roof over your head, food in your refrigerator and a checking account you are wealthier than 98% of the world”.  This is a fact.  So when things go sideways, like this week when Rachael was out of commission and I’ve been out of commission in terms of being a major contributor to our household I really try to remember this.

This morning I’m feeling the full effects of the first-round of chemotherapy hitting me.  Up till this point it’s been pretty easy. And by all other accounts I’m doing just fine so I’m very grateful. I’m just extremely tired. Hard to get from place to place, give myself organized, etc. I find that when the chemotherapy starts stacking up my mental acuity is impacted in this adds to the fatigue. Between cognitive endurance and simple physical endurance with the issues I have with shoulder and leg etc. I guess I hit that wall.

But guess what? I have hit so many walls in the last three years fighting brain cancer that I can’t begin to remember them all so this is no different. I have to put 1 foot in front of the other. Sometimes, I just think about my kids and I do it for them – not only to be here but to show them not to give up. Of course they’ll realize this now but they will later and that’s important to me.

I will finish this round, my first-round,  tomorrow and then I’ll have next week off during which I’ll have an MRI.  Then I will begin round two and will keep going from there. The MRI will give us good information as to whether I should stay on my current chemotherapy regimen which is the Avastin every two weeks and Temodar every day for 21 days a month. If the MRI isn’t moving in the right direction we may switch out Temodar another IV-based chemo or perhaps an oral search as VP-16.  As always I’ll post results here. 

We are praying that Rachael will continue to get better. I think it’s been tough for the kids too, particularly Aidan.  He had a real serious talk with me last night and wondered if mom was it be okay he started drawing parallels to the problems I’m having with my shoulder and leg and I could see where he was going. I told him that mom just picked something up and hurt her back a little bit, she’s going to be better and that my shoulder and leg problems are from my brain tumor – that mom doesn’t have one.  A huge look of relief appeared on his face. He said he was fearful something was happening to her.  I felt so much for him.  Just shows how much kids take in and you just dont know how they will process everything.  He’s doing better today!

When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up –the flames will not consume you.” Is. 43:2 (LB)

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My temodar treatment has been going well.  I have some nausea in the morning and use zofran for that but things are good.  More pressing is my left arm and shoulder. 

Essentially the muscles in my shoulder, bicep,  forearm and sometimes wrist/hand contract and tighten up involuntarily sometimes.  This just freezes it all up.  Because this has happened so many times, on top of seizures, a few falls and new lesions – the pain is terrible while under this tension.  I have an appointment later this month wiyj a nuerologist who injects Botox into the muscles in these cases to loosen them up.  Hopefully that will quell this pain.  I have another appointment next Monday for Avastin. 

IF you’re in the Sacramento, CA area, I’ll be speaking at UC Davis on Thursday night at 6:30pm at the brain tumor monthly meeting.  Use the contact form if you’d like information.

We were able to get away this weekend to Bodega Bay.  It was so nice!  Being on the coast withe wind in my face felt good since I havent been home to SoCal for 5 years.   Here are a few Pictures fron Bodega Bay:

More later.  God Bless!

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