Blogging in B Minor

What a difference being off of chemotherapy makes.  You have to do what you have to do, no doubt about that, but once your dues are paid for that time it sure is nice to have the break.  I actually feel like a normal man for the first time in about a year.  I did ok on chemo.  I worked, I even worked during the last 2 weeks of my radiation treatments and went and had them during lunch hour.  I had fun with my family - went skateboarding with my son (something I hadn’t done myself in 25 years but picked back up like riding a bike) so it’s not all bad.  However, the fatigue is the most significant battle. 

Making a list on Friday for the weekend - just a to-do list and then following through and not being able to finish it was frustrating.  I would only partially complete a list and then have to take a nap.  Many times I was done for the day.  Sunday we would go to church in the morning and I could get a few more things done but would have to take another nap.  Anyway, just it’s something I just learned to deal with and accepted.  It sure is nice now though!  I’m starting to feel more energy which is great. 

As far as being immuno-suppressed, my doctors say it will be 6 months before my immune system is fully recovered from the chemotherapy.  I can tell - I’m still walking around with occasional nasal congestion and so forth but all in all things are getting progressively better.  Now it’s a matter of watching myself for any symptoms and scanning.  I’m going to enjoy life.  My wife and I were talking last night and there is always the anxiety that comes up - and the almost surreal feeling that this is all happening but things happen to people all the time.  We are pretty much over all of that part of it.  The real anxiety that we struggle with still, we realized, is more acute and is around MRI time we have gotten more used to dealing with it over time.  We’ve been doing this for nearly 2 years now and it’s been over a year since my surgery.

That’s it for now.  We’re going to Victoria, British Columbia on a vacation here soon.  Our kids will stay here with their grandparents so it will be nice to get away.  It’s the first time we’ve really had a get away since we were in Paris several years ago and that seems like an eternity!

Will check in soon here..thanks to all of you who have sent emails and well wishes.  As always, they are so much appreciated!

Cheers,

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Tags:  Brain Tumor , chemotherapy

I’ve come to the end of the road with chemotherapy. As you know from the last several posts, I was off chemo (again) for nearly 6 weeks and just hopped back on the wagon and completed my first week on Tuesday. However, I developed an infection over the past 3 days which is no coincidence so I went in to see my neuro-oncologist today at her request after discussing it with my case manager at the Sutter Neuroscience Institute.

Upon discussion with my neuro-oncologist, we discussed a number of points, namely that I’ve had to come off chemotherapy for extended periods in the last 3 months, once for the terrible flu I had to ward off and a second time and more recently for the cold that brought my absolute neutrophil count down into the 850 range. Then we talked about having to come off again to ward off another infection. In charting out labs since November, my counts have steadily decreased as my posts have indicated. I’m now essentially lymphopenic, meaning I have an abnormally low level of lymphocytes in my blood. Lymphocytes are a white blood cell with important functions in the immune system. The most common cause of “temporary” lymphocytopenia is a recent infection, such as the common cold. Makes sense! However, with me it’s been going on for awhile. To date, this hasn’t really been called into question but we have reached a point where we have to question the effectiveness and logic behind continuing treatment if I have to periodically pause my treatment because of issues like this. I could try the 5 days on and 25 off but that is a much higher dose and would hammer my immune system even harder. I would have just as much of an issue there.

In the end, I have completed 7 rounds of “week on/week off” therapy. That’s 3 1/2 months over that 7 months of being on chemotherapy 24 hours a day. This regimen is being used in trials today so there isn’t a lot of data but it’s something that we view as a solid approach. I wanted to get to a year but I can’t will myself there. My body wouldn’t let me. This is God’s way of telling me it’s time to stop and move on - live my life, feel normal again, enjoy my family and live day by day. If we ever encounter growth, it just goes back to the original discussion around surgery, chemo, etc. I could go back on chemo using Temodar or another chemotherapy drug. I could have surgery - it would all depend upon what took place.

There is a part of me, I must admit, that feels as though a security blanket is being pulled away from me. My tumor and scans have been stable - no growth at all. There was some growth, albeit slight, from the time we discovered this in the initial MRI in 12/2006 to when I had my surgery in 6/2007. Since my surgery, however, this has been a stable situation. Pulling the chemo out of the mix is like taking off that life vest, but I know God is there and He is in the middle of this - He is steering the boat, not me and as usual, it’s about giving it up.

Time to move on to a new chapter. This was a good run. I will continue with scans every 60 days and I will have another here soon. It will take about 6 months for my immune system to recover and return to a relatively normal state. I will take the same antibiotic, Bactrim, that I have taken all along during the next 6 months to help fill the void in my immune system. Other than that, this is where I stand!

Cheers,

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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , lymphocytes , lymphocytopenia , lymphopenic , Temodar

I finished up the first week back on chemotherapy last night and overall it went very well.  As I mentioned, I think my body wasn’t ready for it on the first night but by night 2 and 3 I was pretty well in sync with my system again - nothing to eat after 7pm, zofran at 8:30 or 9pm and then chemo treatement starts at 9:30pm as I go to sleep.  So overall I’m really happy with the way it went coming off of a 5-week layoff.  I’m also feeling good energy-wise.  I have some of the typical chemo-related fatigue but I don’t feel like I did before when my counts were so low - it was more or less just walking around feeling like I had a bad cold constantly and wanting to sleep! 

So another week on after taking a one week break and round 8 will be history.  If all goes well and I don’t have to pause my therapy for any other reasons, I will be completely done by November.  I will be taking a break for a week or so at the end of August for a vacation up to Victoria, British Columbia.  No, I’m not such a die-hard that I plan to be popping chemo pills as I gaze out of the hotel window taking in a nice view of the Empress hotel and Victoria harbor!  Speaking of vacations, that will be nice and we also have some friends who have a place at Northstar in Lake Tahoe.  She’s great and has been consistently “reminding me” to get up there so that is something that is in the plans too.  After last year and being tied to the house with a 2-mile rubber-band, it’s nice to think about these things and actually plan them out.

I’ll post again over the weekend - I hope everyone is having a good week and again, thank you for all of your continued support…

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Tags:  Brain Tumor , brain tumor survivor , chemotherapy , Oncologist , Temodar , tumor , zofran

After nearly 6 weeks off of chemo because of my low blood counts, the first night back on chemo went ok.  I will have to say though - how quickly I became used to a “normal” life absent chemotherapy!  Gone were the side effects including dry mouth, the more extreme fatigue (much of it was still with me due to low blood counts), some stomach tightening during the night and waking up needing to eat right away (it sort of feels like you have taken vitamins on an empty stomach if they affect you in that way).  I used my same system - no eating after 7pm.  Zofran at 8:30pm., Temodar at 9:15pm or so and then head to bed.  So it will take a little bit of time to acclimate to it again.  I’ll go from here.  I had started on round 8 so this is a redo.  That leaves 5 rounds left including this one.  It certainly will be interesting to see how my labs come back at the end of this round given the recent plummet.

I didn’t get a lot of sleep last night which is atypical compared to how my system was before.  Probably because I’m not in a groove with it just yet.  I was up from 1-3am.  Tonight should be better I’m sure.  One day at a time - but what is most important is that I’m fitting in more treatment.  I need to try to take as much as I can since afterall, I had a 0% resection because of location.  Once I get to a year, I won’t go beyond that because of the risk of leukemia so I need to keep things going.

Down the road we continue…

On another note, we have a large patio cover outside in the backyard and over the past 2 months, 3 different female birds have built nests in the rain gutters on the inside of the cover in different places.  As a result, Aidan has been able to see the whole process from start to finish - the newly hatched birds being fed all the way to the baby birds leaving the nests for the first time and sitting still on the patio, flying 3 and 4 feet and learning to fly.  It’s been a great experience for him to see all of this and ask questions. 

Keegan turns 1 on Sunday.  It’s been a full year since we went through an emergency c-section 2 weeks after my brain surgery - heading to the hospital at midnight.  What a night.  So we are going to have a party which will be really fun.  It’s going to be a quiet party for him which will be nice but we will celebrate his birthday and how far we have come in one short year.

That’s it for now…

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Tags:  absolute neutrophil count , Brain Tumor , chemotherapy , chemotherapy; Zofran , My Story , Temodar , white blood cells , zofran

Finally…After 5 weeks of weekly CBCs, I finally have an ANC (absolute neutrophil count) from today’s blood draw that is acceptable - it’s at 1200, up from 858 last week so this is great news.  The best news of all is I can get back on the program and start chemotherapy tomorrow night.  I still have to contend with some abnormal aspects of my blood work, namely my white and red cell counts that are low but one of the most important counts, the neutrophil %, was up considerably.  By virtue of that increase I’m able to start back on Temodar which was the overall objective all along.

Thanks to everyone who prayed about this.  Going from 1500 down to sub-1000 to 850, I started to think that perhaps this might be the end of the chemotherapy road so-to-speak but I am glad that didn’t happen.  I felt like it was getting into the 9th inning with a runner in scoring position - and finally a double into the gap after a long drought and we scored!

Time to move forward and start back although I will have to say it will be a little odd after being off treatment for 5 weeks.

That’s all for now.

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Tags:  absolute neutrophil count , blood count , Brain Tumor , chemotherapy , neutrophils , Oncologist , white blood cells

I received my lab work results and the ANC has dropped down to 858 from last week’s score of 964.  Obviously this is in the wrong direction!  On the positive side, there is another count called an absolute phagocyte count and that looks reasonable.  However, this is not enough positive info in terms of my body recovering to start chemotherapy so I will hold off again for another week.  It’s a bit concerning but explains, once again, the fatigue and so forth.  The way I look at it though, as with everything else that’s transpired along this road, it’s all in God’s hands.  I have to give it up as usual.  Of course I have to do my part too.  There are no freebees.

If the ANC drops again next week then I’ll be more concerned and I think my doctors will be as well.  Then we have to start looking at other reasons for the drop.  At this point, however, we believe that I encountered a pretty strong virus not once but twice.  Even a healthy person’s ANC would take a hit, albeit not this hard, if they had to fight this off several times and the ANC can stay down for a bit.  We didn’t expect another drop necessarily.  I would’ve thought that after 5 weeks we’d be back in business!  Grrr.  What I am also keeping in mind is that the “standard of care” for my brain tumor is surgery/resection, radiation w/concurrent temodar followed by 6 months of chemo using Temodar.  I completed all of that like clockwork, not missing a single treatment of radiation or chemotherapy.  It wasn’t until cycle 8 or so that I started running into some issues with becoming sick.  The point is I feel good about completing the standard of care at least.  If this was going on in round 2 of chemo and I was having to pause treatment for a month or more, I’d be a lot more concerned I think.

That’s it for now.  Getting ready for the 4th of July!  It should be a great holiday. 

Happy 4th of July to all of you!

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Tags:  absolute neutrophil count , anc , blood count , Brain Tumor , chemotherapy , lab work , neutrophils , Temodar , white blood cells

Well, I had a CBC run at the lab yesterday in preparation to start back on chemotherapy tonight and I received a call from my neuro-oncologist telling me to wait another week - my marrow hasn’t recovered.  I stopped chemo on Saturday the 14th and was to continue through the 17th.  I would have been off anyway from Wednesday the 18th through Tuesday the 25th but back on again tonight which is why we did the labs.  So, I will effectively be off of chemotherapy for 3 1/2 weeks by the time I get back on providing my lab work comes back ok next week.  As I continue with treatment, it’s taking its toll certainly but when you fold in another cold that also relies upon white blood cells to fight it off, it’s not surprising I find myself waiting.  I also have to consider that I was not even well when the rest of my family became sick (see my post below ”The Infirmary”!) so I was pushing myself anyway to begin with.

This is really the first time I have had to wait because of a really low count.  This just doesn’t happen.  I have generally tolerated Temodar really well.  Regardless, we will wait and next Tuesday I will get a CBC and if all is well I’ll be back on next Wednesday night.  As further detail, when I have a CBC, they take that information and arrive at a calculation called an Absolute neutrophil count or ANC.  The ANC is a measure of the number of neutrophil granulocytes (also known as polymorphonuclear cells, PMN’s, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.  The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called “segs,” or segmented cells) and bands, which are immature neutrophils.  A 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.   Mine as of now is in the range of 950.  Here is a table that lists the ANC score and the associated risk category (essentially risk of infection) with 0 being the lowest and 4 being the highest.  I’m sitting at the higher end of 3 which is pretty good but not good enough to start back on Temodar which will obviously take the count down again.  We’ll wait a week and see where the ANC is.

As an aside, I have to post this picture of my son Keegan because I think it’s hilarious.  Cheers.

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Tags:  Brain Tumor , chemotherapy , Keegan , Oncologist

Our entire house has been sick!  I’m sure this all started with my cold last week.  As you know, I paused chemotherapy again beginning last Saturday.  I called my GP on Monday and he prescribed azithromyicin - a 5-day course.  That seemed to clear it up but as of Wednesday I started into a deeper cough but not as constant.  I spoke with my neuro-oncologist and we agreed to stay off of chemo until next Wednesday providing labs that I will take on Monday come back ok.  If my cough remains, then I’m not sure what we will do.

In the meantime the cold spreads like the London fog!  Early on Thursday morning, Aidan comes into our room crying and coughing - the cough sounding like a seal (obviously croop).  All he could say in between coughing and crying was that his cough was scaring him - poor guy.  It scared me out of bed too.  About that time, Rachael wakes up and says “Mark, I need help.”  Hmmmm, ok, no problem.  I get up.  60 seconds later, Keegan starts crying in his room.  Wow - the train has left the station and I don’t even have my slippers on yet!  I thought to myself, “I say it all the time, be grateful for every day, but this might be a day that I am just a little tiny bit less grateful for - time to put on my slippers.”

I will spare you the details but the first 1-2 hours were, shall we say challenging.  Rachael felt bad all day long.  The day before, Keegan had been to the doctor and was diagnosed with a double ear infection - started on antibiotics.  Aidan was missing Breakaway at Bayside Church, a great 4-day summer camp and at home - albeit the healthier of the bunch.  Cough-drop for Aidan, Scooby-Doo movie.  Check.  Rachael in bed, pillows and covers over head, ear plugs in and dead to the world.  Check. Keegan, well - we won’t go there.  Check.  Meanwhile, I’m telecommuting so I was fielding emails and when they did nap, I was able to work on some key items for the office.

In the end, I rested at 7:00pm - that was special.  But that’s the way the day was.  I ended up spending some of the evening putting some home movies on the computer and started to build a DVD of Keegan from birth to 11 months that I’ve been wanting to start.  It’s coming out pretty good.  That was a good release for me.

I will say, and Rachael and I talked about it today - it was this time last year that the day was growing near (9 days from now, June 29, 2007) that my craniotomy was planned and it was 2 weeks after that when Keegan was born on July 13, 2007.  The point?  This day wasn’t so bad!  It puts things in perspective - our trial.  We can march through anything really. 

This weekend we will try to recharge our batteries and rest up for next week.

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Tags:  Brain Tumor , chemotherapy , My Story

Happy Father’s Day to all of the father’s out there. I will be picking up the phone to talk to my dad a bit later but am not feeling so well today unfortunately. I have ended up with a nasty cold again - nonstop cough, congestion, heavy fatigue and it came on just as I was starting round 9 of chemo on Wednesday night. I continued chemo until yesterday and each day the cold got progressively worse so I made the decision to pull the plug until Monday so I can speak to my neuro-oncologist. I have more than enough experience with this to know that if I keep going, I can’t ward it off. Chemo drops your white cell count - a harsh cold just won’t improve - your body can’t fight it off most times.

Of course the major concern whenever this happens is developing an infection, mainly Pneumocystis carinii which is why I take an antibiotic M, T, F indefinitely. I am nowhere near having this condition but it’s something that anyone who takes Temodar should be aware of.

So, I decided to skip church this morning and get some rest so I can go to my in-laws with my wife and kids to enjoy father’s day which is always a lot of fun. My son Aidan made some homemade cards which are always nice! So, I want to be there for that and that will be great! Tonight the LA Lakers, my team from the age of 7 are playing the dreaded Celtics, albeit down 3-1 so I will take that in and of course Tiger is on an amazing run at the US Open - who doesn’t love this stuff!!

I will talk to my neuro-oncologist tomorrow and regroup.

Happy Father’s day to all of you father’s out there. Every day is a blessing!

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Tags:  Brain Tumor , chemo hints; brain tumor survival stories , chemotherapy , fatigue , Temodar

I believe I’ve mentioned that I’ve been feeling a lot more fatigued lately than before.  I have also picked up some type of flu - pretty much just hit me head on so I didn’t start chemo yesterday as planned and will likely hold off for several more days until I can see how my body does with warding this off.  I can’t tell if it’s a 24 hour issue or some other type of flu.  Not fun though!  So, I’m having to pause my chemo which is not preferred at all.   On another note, we performed a lot of work on my blood to try and understand the source of the nosebleeds and bleeding in my mouth that I have experienced on a few occassions.  No such info came out of the analysis - platelets and specialized studies on them are fine so at this point it’s “unexplained”.  The bleeding has subsided so that is good by I’m an answer man so I’d obviously like to undertand what the issues are related to.

I can really tell a difference when I don’t have the anti-convulsants on board.  I didn’t have any until mid-morning today after missing last nights dose completely and I woke up today with strange sensations in my lips and left hand - the same numbness that I felt in Dec 2006 that started me down this course.   Obviously this is just a staple in my regimen (the ACs) but it has completely straightened out the focal seizures I was experiencing. 

Aside from this stuff, everything else is going well here.  Aidan and I are involved in a soccer clinic on Tuesday evenings which is a great night out for us.  He’s learning the rules and techniques of soccer and I’m participating with him.  I played competitively growing up so it’s great doing this with him.  He really looks forward to it. 

I think I mentioned that at the end of this month I’ll be having an MRI Spect and a PET Scan - the PET should produce great info looking at it metabolically for the first time in a year (I had a PET last March).  Standard MRI looks at the tumor anatomically wheras a PET scan can look at it from a metabolic standpoint - how much or little metabolic activity is taking place.  If there is high metabolic activity detected via PET, that could be an indication that the tumor is on the move.  We are so blessed to have the technologies we do - and to be in a position to use them.  I remember that every day.  There are so many that live in coutries and are in socio-economic groups that don’t allow them to access this type of healthcare.  We don’t know how good we have it here.  I really don’t think most of us do.

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Tags:  Brain Tumor , chemotherapy , MRI , My Story , PET Scan , Temodar