Friends,

Once again we come to you in need of your prayer support.

Unbelievably, the day after the incredibly good news (second opinion) from UCSF, I began suffering dehabilitating headaches.  From there the malady added nausea, loss of appetite, and vomiting.  Since Wednesday the sum of all I’ve eaten is something like 3 half pieces of toast and a few bites of applesauce – and probably all of that I’ve thrown up.

We met with Dr. Pomeroy on Wednesday when this was not-quite-as-pronounced.  Because such symptoms can be evidence of a brain tumor, he asked that we have some tests done if things kept up.  So, yesterday we spent the day in the ER.  Happily, the MRI of my head revealed all is normal, and blood work showed no indication of infection or anything to be concerned abount.  The ER doc said soemthing along the lines of “it appears you have a days-long migraine headache”.   He gave us some painkillers and sent us home.

Our best guess is that it’s A. a migraine B. I’ve caught the local flu bug and am having a harder time shaking it because of my already weakened condition or C. an Visual/Optic Nerve problem – because when I wear my glasses the headache, vertigo, and nausea problem is worse. Essentially I’ve been bed-bound for the last 4 days, and can’t wear my glasses to read or do anything to relieve the monotony.

We would be most grateful for your prayers.  I am on day 5 of this misery.  At least I’m losing weight!

Here’s Lynne with a few thoughts.

The past several days have been really hard. Things are supposed to be getting better, right? When Scott was so sick after his first few chemo sessions, we knew there was a reason, and time would help. When you don’t know what’s causing it, it’s hard not to fear the worst. After months of emotionally being worn down by a roller coaster ride of hopes and despairs, it’s even more difficult to stay optimistic.

Our kids are on the short-term mission trip to South Africa with their high-school church youth group, and we’re hoping they will not need to be aware of Scott’s health status while there so as not to interfere with the effectiveness of the team. We can call if absolutely necessary, but would ask any team parents to be aware and sensitive to not communicate any details of concern.

Thank you again, all of you, for walking with us through all the ups and downs of Scott’s illness.

We had our appointment today at UCSF, getting a second opinion on my cancer treatment.

It was a very long day, with us leaving home at 6:30 AM and getting back at 2.  We had to wait about 2 hours until we could see the specialist.  Right away we both liked her, and found her moderate in her treatment suggestions.  She then got the real expert – UCSF’s Director of Adult Lymphoma Treatment, who has treated dozens of Burkitts Lymphoma cases in his time (!) - and got his input.  Together, the two doctors then met with us.  They felt the treatment I had gotten to date was adequate, though definitely not the current Burkitt’s Lymphoma treatment, and (like the Stanford doctors) that it fell a bit short of the best possible treatment.  So they are recommending that I get three additional sessions – each spaced about 2 weeks apart – of intrathecal chemotherapy.

This isn’t as bad as it sounds – intrathecal is a shot into the spinal cord.  I’ve actually already had three of these, and they really aren’t that painful.  It is thought the intrathecal treatments won’t have nearly the detrimental effect on me that normal chemo has.  Why this treatment?  It will be extra insurance for preventing the cancer getting into my central nervous system, as well as the brain.

Also, the UCSF doctors didn’t really feel that bone marrow biopies were necessary.  They actually felt that, had I had bone marrow biopsies at the beginning (which is their usual course), then they would recommend this as they could do a “before and after”.

One other reason it was great to talk to the UCSF Director of Adult Lymphoma was that he’s seen a lot of cases of Burkitt’s that have returned – and he felt very confident that they would be able to successfully treat it (via bone marrow transplant) if this should happen to me.

So: what does this mean for our near future?  Well, we’ve already set up the first intrathecal treatment for Wednesday with Dr. Pomeroy.  Two more, the last one around July 21-22 (we think), and I’m done!  Now: of course there will be additional exams and scans etc. every 2-3 months to see how I’m doing and check for any cancer recurrence.  But only three more shots and I’m done with treatment!!

So we will probably be able to make our much-desired trip to Seattle to celebrate my Mom’s 90th birthday (both Doctors today saw no problem with this).  I will probably still be in a state of recovery (low stamina and energy) as we are in Seattle, but I don’t care – it will mean so much to be there, with my family in the beautiful Northwest to celebrate a special day in the life of a very special person.

Lynne and I are still kind of pinching ourselves.  There was an old Monty Python skit in which the principal character was woken up from a bad dream by his mother: “there, there, it’s just a bad dream”.  Then his mother woke him again to say “No, that previous image wasn’t real.  This is still a bad dream.  Go back to sleep”.  Anyhow, after 6+ months of treatment, we kind of feel like someone may come along and say “No, sorry, all wrong, back to more radical chemo!”.  It kind of feels like you’re a schoolchild, on summer vacation, but have some fear that somehow the teacher has the ability to put you in summer school at a moments notice.  At some point this news will, however, sink in and we’ll fully relax and celebrate!  It is right now sounding too good to be true.

In spite of this “is this really real” sensation we did stop today at an In n Out Burger to celebrate.  I enjoyed a double double and a vanilla shake.  I had a sip of Lynne’s chocolate shake and, for the first time in months, actually felt like I could taste and enjoy the chocolate!

Oh yeah – my blood work today.  For the first time since I began treatment, all three major counts (red cell, white cell, hemoglobin) were in normal range!  So my body is slowly getting back to normal.  Though there remains a long way to go (I’m very weak, especially in the legs.  And I need a lot of sleep) I am getting there.  As you know, I can hardly wait to get back to a normal life.

Thank you for sharing this journey with us.  It has been a long road.  And finally, it appears, we can see some light at the end of the tunnel.

Gratefully,

Scott & Lynne

PS Tomorrow Daniel and Becky, along with a team of about a dozen other high schoolers from our church youth group, leave for South Africa to assist some missionaries supported by our church.  Daniel and Becky have been assigned to the unit that will do hospital visitation.  It would seem that God has been preparing them for this via my situation!

Well, Monday it turns out is the big day.  We are due at UCSF at 8:15 AM for our second opinion appointment.  The first part of the appointment will (of course) be the insurance paperwork but after that we are told that the Doctor will see us for a full hour – pretty rare for a specialist.  It turns out that the doctor we’re seeing is not the “Big Kahuna” specialist at UCSF, and in fact it appears is brand new at UCSF as his/her name doesn’t show up on UCSF’s online directory.  This has us a bit concerned that the doctor is a new grad – and that, as a result, we’ll get some doctrinaire “this is what the book says” answers.  Bottom line, what we most need is a good, well thought out opinion, and we would love your prayers for that.

To be very honest, it’s hard at this point to not resent the second opinion.  I know that sounds ludicrous given that my life potentially rides on this second opinion.  But it feels like I’ve been sick and/or getting treatment for so long, and I just want to get my life back.  And my treating Santa Cruz Oncologist says I’m healed and need no more treatment.  So, with the decision ultimately in my (and Lynne’s) hands, it’s very tempting for both Lynne and I to want to ignore whatever is said Monday.  I want my life back, and Lynne wants her life back too.  We would be grateful for your prayers that we will have the courage and fortitude to face and deal responsibly with whatever we hear in the second opinion.   That feels funny for me to ask for prayer for such – I’m typically a responsible, disciplined guy – but this whole event has me beat down.

How about some good news, you say?  8 days ago I had a PET scan (a full body MRI) – and no signs of cancer were evident!  That argues very strongly for no additional treatment…

Congrats Boston Celtics!  It was one of the best NBA seasons and thus fitting that the Celtics would win – and they really modeled the concept of team and deserved to win.  Lately I have been enjoying the 2008 Euro soccer tournament – their matches come on every morning about 11:30, and have given me something fun to watch.  Great game today between Denmark and Russia, with the Russans getting an upset, Spain and Italy go at it tomorrow. 

OK I’m babbling.  Thanks to all who read this blog and care and pray.  You spoil us with your care, and it is so great to know that I can send out this silly blog tonight and dozens, possibly hundreds, will pray for our Monday appointment.   Thanks for enduring my downcast griping tonight about the second opinion.  We are so grateful for each of you.

Much love,

Scott & Lynne

Happy Fathers Day to all the Dad’s in the crowd.  Being a Dad is such a great privilege – all it takes is a day where you reflect on the legacy of your own Dad to see that.  I’m very grateful this particular Fathers Day just to be alive! I”m also very grateful for My late Dad and late Father-in-law for their influence in my life, and very grateful to be a Dad to two great kids.

The last few days I’ve really been feeling lousy, just very tired, needing lots of sleep (2-3 naps / day) sometimes nauseated.  This is really kind of unexpected at this point (13 days since the last chemo), but then this whole treatment / therapy thing is unique and I suppose I shouldn’t be surprised.  As I’ve mentioned before, I’m learning that I’m impatient when it comes to experiencing good health and it’s been a humbling, sometimes discouraging time.

I completed three different examinations this week.  Friday was a full body (“PET”) scan; we’ll get the results of that sometime next week.  The PET scan is one of the best tests of whether or not I have any cancer remaining in my body.  The other two exams tested my heart and lungs, each of which was subject to possible damage during my chemotherapy regime (via some of the drugs).  Thankfully, neither of these exams showed damage!  Heart and lungs undamaged….the bike is calling to me….whoops, gotta resist the impatience.

We’re still waiting to find out when we can see the UCSF specialist (who will give us a second opinion on two items: more chemo, and a bone marrow biopsy, which would test for cancer at a microscopic level).  Now that we have the three exams out of the way the UCSF folks have no excuse for delay so we’ll be calling them regularly until the appointment is on the books.

Thanks to all of you that have made financial contributions to the special fund set up at our church.  (We received a nice check last week from the church).  It is really great to have our finances not in crisis while we go through all the rest of this experience.  I’m really looking forward to getting back to work (impatience again) and receiving my full check.   Thanks again to each of you (we don’t know who you are, by the way) who have eased the financial load while I’m at 60% disability pay.

Did you know that it’s the normal stuff of life that is so good?  Thursday night Lynne took me down to the Mount Hermon Fitness Center.  I got on the Stationary Bike and went for it, pushed myself hard.  I was in the middle of this when I realized it was the first time I’d been on the Stationary Bike since, well, probably early December (when the symptoms of my tumors became apparent).  Tears started to fill my eyes – it’s just so powerful when I get to do something normal.  This theme (normal) has become very powerful for Lynne and I during this experience, and talking to other cancer patients it sounds pretty common.  One just gets so tired of the weirdness – loss of hair, digestive problems, energy problems, drug issues, tingling toes and fingers – and you just long for normal.   The most powerful expression of this for me has been, strangely enough, bird song.  Somehow, when I hear the birds singing, it’s like a reminder from God that there is still the possibility out there for normal life someday – He who cares for the birds won’t fail to care for me.

OK, I’ve indulged on your kind listening ears long enough!  Thank you again for hanging with Lynne and Daniel and Becky and I during this strange and rough season of our lives.  Your encouragement and kindness and prayers mean everything to us right now, and keep us going!  We look forward to the day when we can return the same to each of you in equal measure (if that is even possible).

Much love,

Sott & Lynne

Health update

As the comic books used to say, “by popular demand”…an update on Scott!

I’m one week removed from my Chemotherapy.  It has been a rough several days, with a lot of nausea and gastronomical / toilet issues (I’m avoiding the “D” word for the sake of my wussy older brother).  Today has been especially bad stomach-wise, the worst I’ve had for quite a while. 

My last two Chemo cycles, I started feeling better 9 days into it, which would be tomorrow.  So we’re hoping the pattern holds.

I have 3 different scans etc. this week.  Two are with the heart and lungs, and the other is a full-body MRI (“PET scan”).  Once those are done and available, we’ll have a pretty good idea of whether or not the cancer still lives in my body.  (Dr. Pomeroy is convinced the cancer is gone.)

And once we get those results we’ll be able to have the appointment with the UCSF doctor (and get the second opinion).  Our prayer request is that we could get in to see this doctor soon, and find out one way or the other if more chemo is necessary.

In many ways, this last week has been the most discouraging for Lynne and I.  We had been so looking forward to hearing from our Oncologist that we were done with Chemo.  Well, he did tell us that, but the hard reality is that we still don’t know if we are out of the woods until we get that second opinion.  It has been such a long haul, with so many extreme health issues, and we are weary and just want it to be over with.  The thought of the potential of more chemo is hard to take, particularly because the additional chemo would actually be rougher than what I’ve faced so far and would require 3 or 4 hosptilization sessions.  So all those thoughts have been churning through our minds these last days;  it’s been hard.

I’m so ready for my energy to return.  Chemo puts one in the odd place of wanting people contact, feeling lonely, but knowing inside that there is no way one has the energy to be with people.  I so much want my energy to return so that I can again enjoy being with people, and can again enjoy the pleasure of hard work.  My days at this point are spent in a combination of sleep and trying to make the time pass by.  I’m learning that I’m an impatient guy! and trying to make the time pass by has been a challenge for me.

Answered prayer – a word from Lynne

Several weeks ago we had asked for prayer that the insurance company would come through with the refund and reimbursement for Becky’s and my flight tickets to India that we were unable to use in February. We were told not to expect anything for several weeks.  This was a problem as we were counting on this refund providing the means for Daniel and Becky’s South Africa mission trip this summer with the church high school group.

Just this past Friday, things came together for the refund from the airlines, and with that documentation, the insurance company can now refund the remainder of the funds that all of our friends and family had given, and can now still be used for missions this summer. What a wonderful testimony of God “rarely being early, but never being late.” After all, it was His money! We are just so grateful for the timing, and for God’s answer to many prayers!

Another prayer request we would like to share with all of you: this past Saturday, Daniel and Becky were working off one of their “teen auction” work commitments helping to raise money for the South Africa team as a whole. Daniel, along with two other young men were clearing and hauling already cut branches and brush, and has gotten a severe case of poison oak – swollen face, eyes, neck, arms, and across his abdomen. Took him in to the Dr. today, need to put him on steroids (prednisone) in moderately high doses to get the inflammation under control. Tomorrow and Wednesday he has his two finals – chemistry and Spanish 2. It’s hard to take a final with swollen eyes and wanting to scratch your skin off. We’re trying to communicate with both instructors via e-mail as to what he can do to make up the tests, but the timing couldn’t be worse since school is officially finished on Thursday. We would appreciate prayers for a little grace and understanding from his teachers, especially his chemistry instructor.

Thanks again….

We so much have benefitted from your prayers, kind words and thoughts.  Thank you to each one of you!

Scott & Lynne

There is still a ways to go, but…

Yesterday, I had chemotherapy treatment, and today we met with Dr. Pomeroy (my Oncologist).  Dr. Pomeroy feels I am done, healed, and today announced that he does not plan to give me any more chemotherapy!

Now, two thoughts.  First, my fellow cancer travellers have gently reminded me that this disease takes many twists  – and if anything has characterized my “cancer travel”, it has been “expect the unexpected”. 

Second, Dr. Pomeroy is sending us to a UCSF Oncologist to get a second opinion on two items:

1. should I get the additional Magrath chemo treatment that Dr. Pomeroy didn’t give me? (you’ll recall from the last post that Dr. Pomeroy didn’t give me this treatment because “I brought you as close to death as I dared risk”).

2. should I get a bone marrow biopsy to search for any additional signs of cancer?  Though Dr. Pomeroy is scheduling me for a full body (PET) scan, my particular form of cancer (Burkitt’s) lurks at a very microscopic level and is hard to completely detect.

Dr. Pomeroy is recommending no to both of these items, basically on the premise that he thinks I’m healed and done.  But Lynne and I are grateful for the opportunity to get a second opinion on these very important questions, even if it means more chemo.  So we’ll make the appointment with the UCSF doctor and make a decision after he weighs in.

Something funny

Lynne and I were lying in bed last night talking about how, in spite of our best efforts, we really do grow into our parents, warts and all (now, I don’t mean to imply anything negative here…neither of our parents had many “warts” – we come from extremely good stock!).  Lynne was talking about how she’d vowed not to ever snore like her Mom did, and, well, now she snores.  This reminded me that I’d also vowed as a teenager not to ever have ear hair like my Dad and his brothers did….and, along about age 40, out popped ear hair.  Anyhow, as we were having this conversation in the dark last night, I started feeling my ears, and all of a sudden hollered “Hey, I don’t have ear hair anymore!!!! Thank you Chemotherapy!”.  (Chemo has gotten rid of almost all of my body hair).  We started adding up some of the good things that have come out of chemotherapy – weight loss (I’m still a few pounds below my basketball playing weight!), reduced blood pressure, a deep understanding of a terrible treatment necessary to heal a killer disease and compassion for those who go through it – so Chemo is definitely not all bad!

A proud day

When I was in 7th grade, I had a terrifying day.  I was attending a newly racially desegregated junior high.  The black kids resented being bussed halfway across the city (Seattle) and the white middle class kids were uncomfortable with the imposition of black culture in their local school (lunchtime always meant Stevie Wonder or Jackson 5 songs turned up really loud…not something that happened in my white neighborhood).  One day, a rumor started through the school that some of the white students had insulted some of the black students, and, as a result, there would be a white vs. black “rumble” (that’s a really big fight for those of you not schooled in the 70′s) after school.  Tension built during the day, and, by the end of the day, this timid kid just looked to get home safely.  As I left, I found that there was no way around the rumble line.  And I saw that my fellow students had weapons on them that I never knew of – knives, switchblades, sticks, chains.  After about 10 minutes of a standoff, the Seattle Police came in en masse, with guns unholstered, and broke up the rumble before it started.  Nothing violent ever came of that day ultimately, but the tensions never left between black and white all the way to my high school years.  Those years and the inherent tensions made a deep imprint upon my personhood, a bit of a scar.  At the same time, I remain a real fan of 60′s & 70′s soul music!

For any person that lived through those tense 60′s and 70′s and their accompanying racial unease, it wasn’t fun.  That’s why I felt very proud today.  I don’t know who I’m voting for yet, but to see a black man nominated to run for President – I’m very proud of our country.  Way cool, and for me it symbolizes some level of healing.  America remains what we’ve been for centuries: the land of opportunity. 

Thanks for listening to my ramblings, and for caring so much for Lynne and Daniel and Becky and I during this very tough season.  We appear to be, finally, at the beginning of the end – but, the Fat Lady hasn’t sung yet.  So we’d be grateful for your continued prayers, kinds words, and partnership.  Thank you!

Scott & Lynne