Blogging in B Minor

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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Web address:      http://www.sciencedaily.com/releases/2010/04/      100401173713.htm

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Great info from carepages. Some of it is really common sense but a good reminder for all of us traveling with cancer.

Traveling w/Cancer

Whether the cancer patient is an adult or a child, traveling takes some extra planning, but unless your doctor has ruled it out, taking a trip shouldn’t be impossible. Hard and fast rules about cancer and travel will vary because every cancer patient has unique needs. A cancer patient who is between treatments will have different concerns than the one who has completed all cancer treatment, just as someone who has had recent surgery may have to take precautions that are different than someone whose surgery is in the past.

Cancer and Travel: First Stop — Doctor’s Office

Start planning your trip by discussing any possible travel restrictions with the cancer patient’s medical team. Make sure that your travel dates will not interfere with scheduled chemotherapy, radiation therapy, or surgery. The oncologist can weigh in on the best time for travel in relation to any upcoming cancer treatment.

This is especially true when the cancer patient is a child. Terri Ades, DNP (doctor of nursing practice), the director of cancer information for the American Cancer Society, says that involving a child’s oncologist or oncology nurse when making plans for a child with cancer will help you select the trip dates, location, mode of travel, and activities that will work best for the child. For example, taking a child who is immuno-suppressed or at risk for infection on a trip where there are large crowds might not be the best choice. Most cancer patients are also advised to avoid travel to developing countries for the same reason, especially if the patient’s immunity is compromised by chemotherapy, for instance. In some cases, travel may be considered safe, but the doctor may recommend taking prescription antibiotics along on the trip in case the cancer patient contracts an infection.

Some cancer patients are advised to avoid air travel altogether due to the pressure changes that occur during flight and the possible need for supplemental oxygen. Some forms of cancer can increase a patient’s risk for developing blood clots, called deep venous thrombosis or DVT, especially during long airplane or even car trips.
Your doctor may suggest avoiding travel when your blood counts are likely to be low, such as in the weeks following chemotherapy. If you must travel during such a time frame, Gregory Plautz, MD, chairman of pediatric hematology and oncology at Cleveland Clinic Children’s Hospital in Ohio, urges families to discuss with the child’s doctor ahead of time what likely side effects will occur during the trip. For example, says Dr. Plautz, if the blood counts are likely to drop significantly, the family should know what precautions to take regarding fevers, wearing a protective face mask in airports or other crowded spots, or participating in vigorous recreational activities that might cause bruising or bleeding.

The Cancer and Travel Preparedness List

Proper planning means being prepared to manage cancer treatment or cancer treatment side effects while away from home.

Medication Information

Obtain and carry with you a letter from your doctor or pharmacist listing all prescription medications being taken for cancer treatment. This letter should have a description of each drug, including brand and generic names, dosages, number of pills you take each day, and the need for any refills while traveling. If you have a tissue expander or any implanted metal device, such as an intravenous access port, you should also have a letter from your surgeon describing it (in case questions arise at metal detectors and security screenings). Your doctor’s address and telephone number should also be listed.

If you’re going to a foreign destination, have the medical information translated into the language of that country and learn key foreign words and phrases to describe your cancer treatment in an emergency situation. Leave a copy of all this information plus a detailed itinerary of your trip with a close friend or relative who could fax it to you in an emergency.

Ensure that your medication is legal in the country you are visiting — this may require several phone calls or correspondence with an embassy or consulate office. Restrictions regarding what you can take out of one country and into another vary greatly. The majority of those restrictions involve controlled substances such as morphine and codeine, as well as drugs that are delivered by injection.

In addition to planning ahead for scheduled medications, Plautz says families should also discuss with their child’s doctors in advance any potentially needed medications, such as anti-nausea or antibiotic medicines. 

Medical Care at your Destination

Before you leave home, find out where to get emergency medical care, if necessary, at your destination, including the local emergency services, phone numbers, and the number of the local hospital. Ask your doctor if she can recommend the best medical facility for you. Know where you can get prescription refills or replacements at your destination, should your medications or supplies be lost or damaged. If you need oxygen regularly, arrange to have a supply where you are staying.

If the patient requires an evaluation or a treatment by a doctor while at a travel destination, coordinate the visit in advance, and have contact information for your home doctor in case the doctor at your destination needs to consult with him.

Insurance Clearance

Discuss your medical condition with your travel insurer and tour operator, and ask about any restrictions you should consider before booking. Ask your health insurance provider about any limitations or procedures you must follow to use your insurance at your travel destination. Some travel insurance programs may help cover medical expenses while you’re traveling.

Cancer and Travel: Packing Prescriptions

Be especially careful about packing medication. Carrie Strehlau, spokesperson for St. Jude’s Children’s Research Hospital in Memphis, offers these tips for traveling with a child who is undergoing cancer treatment — sound advice for an adult with cancer as well:

• Bring more of your child’s medicines than you think you will need, just in case your stay becomes longer than planned.
• All medications should be kept in their original, childproof containers.
• If traveling by car, do not store medication in the glove compartment or trunk. These areas can become hot and humid, which can alter how well some medicines work.
• Keep all medications with you in a carry-on bag when traveling by train, plane, or bus. Your child may need a dose during travel. If your luggage gets lost, you could be without the medication for several days.
• Take along a mask for your child. Although wearing a facemask is not always comfortable for children, it is essential for helping keep germs away.
• When traveling to a warm climate, remember that certain medications can increase the skin’s sensitivity to the sun, and apply sunscreen with an SPF of at least 30.
• If your child has a central line, be sure to bring all of the proper materials needed to keep on a consistent cleaning schedule.

Cancer and Travel: Ready for Take-Off

Cancer places additional demands on travelers — these tips will make the trip go more smoothly for everyone:

• If the cancer patient is a child, consider his comfort and pleasure during the vacation. Take along a favorite pillow, comfortable caps for a bald head, and toys, games, and music for distraction and relaxation during the trip, says Dr. Ades.
• Remember to follow basic guidelines for smart travel. Get any recommended vaccinations before you go, and eat only well-prepared food at reputable establishments once you get there. In any country where water quality is suspect, drink only bottled water, and avoid ice in drinks.
• Allow extra time at the airport, in case of delays going through security checks or managing carry-on equipment. Consider other conveniences to ease discomfort. For instance, will a wheelchair at the airport make the trip less exhausting on the patient?

Finally, before you leave, make an appointment with the home-based doctor for a post-travel check-up to discuss any unusual symptoms or discomfort experienced during the trip. You may not need to keep it, but you’ll have peace of mind knowing it’s on the calendar.

Cheers,

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I’m slowly pulling out of this and have some time to ellaborate on my fun with the flu.  This flu is hard for anyone let alone those with a suppressed immune issue. 

First off, the strain of influenza I had been dealing with is called Haemophilus influenzae.  This is not to be confused with H1N1.  Most strains of H. influenzae are opportunistic pathogens – that is, they usually live in people without causing disease, but cause problems only when other factors (such as a viral infection or reduced immune function) create an opportunity.  As brain tumor survivors, we have inherently suppressed immune systems.   As I mentioned, my white blood cell count was 0.9 going in to the hospital and my absolute neutrophil count (ANC) was at 400.  Normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection.  Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutropenia increases the risk of infection. 

So, I was a prime candidate which is why it’s important to have regular CBCs, which I do.  When the flu started my counts took a dive fairly quickly.  I have been on Avastin every other week The CBCs confirmed this.  The CBC on Thusday showed my ANC is at 1,200 now so I’m getting there but the week and a half of being down like this has taken its toll.

The MRI that we conducted in the hospital showed that everything is stable.  The one interesting detail is that there was an observation showing an infarct resulting from subacute ischemia.  Brain ischemia, also known as cerebral ischemia, is a condition in which there is insufficient blood flow to the brain to meet metabolic demand.  This leads to poor oxygen supply and thus to the death of brain tissue or cerebral infarction / ischemic stroke.  It is a sub-type of stroke.  This is viewed as a positive in my case because it shows that the blood supply to the area of the tumor is being cut off.  I’d venture to guess perfusion test would reveal this.  I am weaker on the left side and I have more issues with equalibrium.  I can’t be sure if this is a result of just having the flu,  an episode of radiation recall, or ischemia.  Regardless, I can’t do anything more than we are doing/have done.

Being in hospitals is not too fun obviously.  I don’t know how many bags of antibiotics were pumped through my body.  I ran a high body temp for awhile and that can make one more vulnerable to seizures (and ischemic attacks).  I had one seizure in the hospital.  Ativan handled it.  To add a bit more detail for those interested, the main symptoms of ischemia involve impairments in vision, body movement, and speaking.  The primary symptoms of brain ischemia that apply to me include problems with coordination and weakness in the body.   What is amazing is that all of this was a chain reaction that began with the flu.  My immune system is compromised and the dominos fall.

That’s it for now.   GLAD to be out of the hospital.  A prayer out to Michael who will be going in for a second craniotomy in the next week or so.  Please pray for him

 Cheers

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How many times do we focus on the future and worry about the future.  As a brain tumor survivor, I struggle with this all the time.  I know many other survivors do.  Caregivers and family members alike have the same problem.  Much of this is human nature.  A great example is when an MRI scan is approaching.  It’s nerve wracking!  It’s difficult not to look at that date on the calendar and start wondering about the outcome of the scan.  Starting a new therapy – chemo.  How do you cope?  Seeking out people who have gone through it.  How will I do this?  Surgeries?  For me, my tumor is on the motor strip.  I was told I wouldn’t walk again.  I walk.  The goal, however, is not to catapult myself into tomorrow – nor is it to dwell on yesterday.  It’s staying in TODAY.  The moment.  The power of today.  I can’t change yesterday nor can I change what will happen tomorrow.  Yes, I can learn as much as possible about treatments but when I move into worry, anxiety and other negative thinking that is not helpful then I need to adjust and be present.

Let’s face it, whether you have a brain tumor or any other problem in life, all any of us have is today.  I can second guess what’s happened in the past but it’s gone and done.  I can also worry about the future but all that will accomplish is taking me out of the moment – I’m not present for my wife and children, my friends, God – even myself.

Steven Curtis Chapman wrote an amazing song called “The Miracle of the Moment”.  It’s worth placing the first two verses and chorus here in this post:

—–

It’s time for letting go
All of our “if onlies”
Cause we don’t have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

There’s only One who knows
What’s really out there waiting
And all the moments yet to be
And all we need to know
Is He’s out there waiting
To Him the future’s history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss the miracle of the moment

—–

Pretty powerful, relevant and so on point.  Should’ve.  Could’ve.  Would’ve.  How unproductive but I find myself doing it.  And I pray.  The other question I ask myself is “Is this helpful?”  If it isn’t, I stop.  Sometimes it isn’t easy.  Having a relationship with God certainly helps – I pray for His will for me.  He’s the author of life.  He knows where this is going.  And as this song describes, it is about letting go – not just the “if onlies” but everything.  Living freely.  Living for today and sometimes, when the road is rough, living for the moment – the miracle of the moment.

I pray that we all can take life as it comes and not worry so much about our future.  It will play out as God has planned it to be.  If you are not a believer, that’s ok too.  Staying in today is for you, too.  I want to be there.  My youngest son Keegan turns 2 on Monday.  What if I’m all worried about my upcoming MRI?  I’m not going to allow that to happen.  Today is Friday.  I’m enjoying Friday.  I hope you are enjoying / have enjoyed Friday as well.

Peace

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Immunotherapy appears to be gaining a lot of traction in the fight against cancer.  Here is another vaccine that is specifically designed to target brain cancer.  The interview with Celldex CEO Anthony Marucci  can be viewed on CNBC.

 This approach is nearly identical to that of DCVax-Brain.

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Today I will receive my second DCVax treatment – everything is moving forward according to plan!  I’m very obviously very happy about that.  I meet with my Neuro-Oncologist in about an hour and we’ll cover my labs from this morning and then I’ll have the treatment.  My labs from Monday were great.  My ANC (absolute neutrophil count) has been great – my white cell count has been higher than it has since I’ve been on treatment so everything looks good there.

I did have a seizure on Wednesday here at work.  I was in a small meeting with just my management team so that was good.  I’ve coached all of them on how to handle that – they really didn’t need to do anything other than “take a break”!  I took an ativan, did my breathing to relax and in about 5 minutes it was gone.  This is all the Gamma Knife.  So, this is about 5 since that procedure.  This was confined to my left shoulder again but that results in my left arm being involved.  I just got a ride home and then slept.  I find when I push myself I’m more susceptible.  I”m still working just 5-7 hours depending on the day.  I increased my meds based on previous discussions with my Neurologist and will continue to if anything else happens.  None of this is unexpected though and the positive here is that I have a good 30 second or so warning.  I know when it’s coming so when I drive I’m either in the right lane or the far left – and it’s my left side so even if my left leg became involved, which it hasn’t, I feel pretty safe driving.

I put up a new area in the blog that contains life pictures.  You can find it under the photos tab.   I have put pictures from pretty much my entire life – childhood, growing up, Rachael and I, my children, etc.  I wanted to have a place where we could go and see all the fun times we have had and continue to have as I add to it.  Also, I want people to know that just because you have a brain tumor you can still have fun.  Don’t get me wrong, there are days when I am irritable and not in a great place (or let things get to me a bit) but there are also days when I am in the backyard, playing soccer with my son (I just can’t kick the ball with my left foot!) or trying to beat him in a game of horse.  We still enjoy life.  We’ve had some good getaways.  Rachael and I are going to getaway for our wedding anniversary too.  We are going to…..Sacramento!!!!  Woo Hoo!  We didn’t want anything other than a few days alone so we are staying local in a nice hotel, going out for a few dinners and will just enjoy time away by ourselves.

The Sacramento Bee writer and photograher were over to our house on Wednesday night to talk with Rachael to finish up the piece that will likely run in this weekends paper.  I wrote about this several posts ago so you can read that if you haven’t to know what it’s about it.  I will also post a link to the online version of the article once I know when it’s published.  It could slip into next week too – not even sure.

 That’s it for now.  Have to run.

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As I wrote earlier, I had a seizure on Saturday, March 14th.  My doctors indicated it was likely a coincidence.  I wasn’t so sure but I received sound advice from Sutter, as always, that I should discuss my medication levels with my Neurologist because she was concerned – my seizures will likely increase as I move forward in time.  I called on Monday and have an appointment this next Monday.

In all of the hoopla regarding the vaccine, I didn’t mention that I had another seizure on Tuesday – about the same severity.  This one was at work – but at least I was in my office and not attending a meeting.  Of course I’m concerned about this occurring and I’m concerned about not being able to work because of this.  It’s frustrating.  I got through it though and went home and was able to reach my Neurologist and we came up with a plan to increase Keppra incrementally over several days.  So far that is holding.  Seizure control is a fine balance and not an exact science as I have learned first-hand from my Neurologist.  He is very good at what he does, as is everyone that has been treating me.  I have truly been blessed.  I am taking three different meds to control this and he adjusted all of them up/down at some point during my treatment.

We knew this would happen but not this soon.  I haven’t spoken to my Neurosurgeon but I am curious whether she still thinks this is coincidental or not – I haven’t had seizures like this until now – post Gamma Knife.  So, we’ll see.  For now, things are ok!  It’s really just part of the process here.  I have been told they will increase but we will be praying that they don’t.  I feel comfortable that we have been proactive to deal with it at the advice of my Neurosurgeon and if I do have issues, there will be more adjustments.

On the treatment front, my Neuro-Oncologist is really in a waiting pattern with treatments such as Avastin purely due to the Gamma Knife surgery.  Anyone has to wait 4 weeks to allow healing before resuming chemo or chemo-like treatment.  So I’m doing the best I can.  Yesterday was a good day – I had some good strength after work and threw the ball around with Aidan in the backyard which was great and then made a cardboard butterfly with his photo on it that he then decorated for school.  It was good for us.

More to come

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