Home » 2010 » May

Quote of the Day:

To live is so startling it leaves little time for anything else.
- Emily Dickinson

MRI

MRI, Medical Updates 3 Comments »

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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Update

Medical Updates 2 Comments »

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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Boys in Wedding

Blog 1 Comment »

Our sitter, good friend (and many times life-saver!), Sarah, was married on Saturday to Derek Brandt who we have gotten to know and is just a great guy.  They have both taken to our boys and love them as their own.  Anyway, they really wanted both of them in the wedding which was so thoughtful (and brave!).  I couldn’t make it but Rachael and her dad went an handled the kids.  Seeing little Keegan all dressed up like this was a riot!

Congrats Sarah and Derek!

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Chemotherapy Update

Chemotherapy, Medical Updates 2 Comments »

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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Prayer Request for Rachael

Family, Physical Therapy, Support 5 Comments »

A quick prayer request for Rachael. She has thrown out her back somehow so we are both walking around like we are in our 80s! With Rachael out, things at the house are difficult. The most difficult is lifting Keegan in/out of the crib. For now, we have a small step ladder and taught him how to go to the third step, strtech a leg over the lowered crib rail and in and then back to get out again. We just pull the ladder away when we leave. What a trooper!

She is getting some treatment from a friend of ours who is a PT. I continue to wake up most nights with severe pain shooting from my shoulder down my bicep and into my forearm. Rachael is the key though. She really keeps our family sailing! So please pray for her healing!

God bless,

Mark

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UC Davis Talk

UC Davis 1 Comment »

As memtioned, I gave a presentation at the May Meeting of the UC Davis Brain Tumor Group. The subject was using iPhone apps to help manage treatment. The following videos capture the presentation if you care to watch. There is a 10 min limit with youtube so I cut it up into 3 segments – approximately 5-8 mins long each.

Also, keep in mind this is far from a professional film production! I had a podium, a PowerPoint presentation being projected on to a large screen and no mic. One annoyance is there are times when I move out of the picture to clarify items on the slides but the camera doesn’t follow – it would have been too disruptive to do so. The objective was to connect and present the information, not film it. Nonetheless, you’ll still glean most everything as if you were there.

More to come!

UC Davis Brain Tumor Talk Part 1 of 3

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UC Davis Brain Tumor Talk Part 2 of 3

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UC Davis Brain Tumor Talk Part 3 of 3

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UC Davis Info

Blog, UC Davis No Comments »

I’ve received a number of requests for more info regarding tomorrow night’s meeting.  Here is a PDF w/ info.  Thanks for your support!  It should be a fun night.

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Temodar and Getaway

Medical Updates, Support 1 Comment »

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:

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More later.  God Bless!

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