Friday, November 16, 2018

More of the same

I am fighting a terminal disease.  It seems to me that I should be out there every day, living life to the fullest, having new adventures, chasing dreams, etc.  But, the reality of life is much more mundane than that.  Don't get me wrong.  If I won the lottery tomorrow (not likely given that I don't buy lottery tickets), I would quit my job and start seeking out bigger adventures.  But, the reality is that I have responsibilities, a family to take care of, a job that requires I show up to work, and I can't just drop everything and go out chasing wild adventures.

Besides, I'm tired most of the time and I need my rest.  I hate to say it that way, but every week is fairly similar right now.  I start out Monday feeling pretty good, after resting for most of the weekend.  As the week progresses, I get more and more tired, and I find myself falling asleep earlier each night.  By the time Friday rolls around, I'm exhausted. And then, I rest up on the weekend, so that I'm ready to go again for the next week.

Last weekend, I got out of the house on both days, which is unusual for me.  On Saturday, I had my preseason orientation at Sugarbush, which took half of the day.  My wife drove me to the mountain and then picked me up.  After the orientation, we went out to the new tasting room for Lawson's Finest Liquids.  Regretfully, I stuck with water as others drank beer.  But, it was nice to be hanging out with my skiing friends again.

On Sunday, I had to go to Burlington to get a blood transfusion.  My hemoglobin levels were really low at chemo last Friday and for the first time, they wanted to do a transfusion.  In the end, I'm glad I did it, because it increased my energy levels for a few days, at least.

But now, it's Friday again, and I'm tired.  Sugarbush opened for the season today and I could ski this weekend, but I know that I won't.  Tomorrow morning, we have the Thanksgiving farmers' market to attend in Montpelier, and that will be my activity for the day.  I am hosting Thanksgiving for my wife's family, and I need to do my shopping tomorrow.  I am sure that next Thursday will be a challenging day for me; cooking for 9 people will take a lot out of me.  I'm working the next day (voluntarily) but at least I'm working from home.

Suddenly, it's the holiday season.  I have to figure out how to do any Christmas shopping this year with minimal effort.  It might be an Amazon kind of Christmas this year.

Actually, the biggest thing I'm looking forward to is my daughter returning home after her semester in Spain.  She has only been gone since late August, but she will miss Thanksgiving at home this year.  It will be her first ever Thanksgiving away from home.  She returns home on 12/14, late in the day.  It will keep me up past my bedtime, but I can't wait to see her that day.  Once she's home, then Christmas can happen.

Thursday, November 8, 2018

For now, it's status quo

I finally gave up on getting rapid resolution out of Sloan Kettering.  They were not answering my questions, and sometimes I had the impression that they didn't even understand that I had a problem in knowing what to do next.  The docs at Sloan Kettering set me up for a long day at the hospital on 12/4, and I'm just going to wait until that day to raise the treatment issues with them.  I wouldn't do it this way if I wasn't already in treatment, but I am being treated, so I'll go with that treatment for now, and hope it is effective.

I think that the radiation oncologist will be surprised when I meet with him and he finds out that the radiation hasn't happened yet.  He doesn't live in the world of insurance approvals and having bureaucrats run your life.  At the same time, I tried to work with his office to see what they wanted me to do, and I got nowhere,  So, they can't claim that they weren't informed of the problem.

This will be my first day ever at Sloan Kettering where I'm seeing a radiation oncologist, a medical oncologist, and surgical oncologist, and my last appointment is with both the medical and surgical oncologists together.  By the time that day is over, I should have my future laid out for me.

My insurance approval is good until April and my wife and I are staying on the same insurance policy next year.  So, the approval should be good for January if we do proceed with the radiation.

My new reclining chair at home has been quite a relief.  It allows me to relax comfortably in my living room, without hitting the same pressure points that my bed hits.  My fatigue is so bad these days that I felt like I was getting bed sores from laying down much of the time.  The chair has relieved some of the pressure points and I'm feeling much better just a week after getting the chair.  My wife is a genius at times.  Well, maybe all of the time.

This coming Saturday, I have my orientation day at Sugarbush for my 19th season of work.  As I mentioned in my last post, I tried to resign my position and they basically refused to accept my resignation.  My goal is to work within what my body can handle and have some fun.  I don't think that I'll ever work 2 days in a weekend, but I will try to work the more stressful days - opening day for the program that I work in, holidays, etc.  I'm glad the mountain was so open to accommodating my illness.  I think that's one of the advantages to working for a privately owned mountain rather than a mountain owned by a mega-corp.  Being an employee there really feels like home, and I really appreciate that my employers were open to a creative solution to keep me on the hill.

So, for now, I stay the course.  By the time I get to NYC, I will have finished 3 cycles of Eribulin, the current chemo drug.  That should be enough time to see if it's having any effects.  And, we are doing something, which is better than doing nothing, so I'm OK with waiting a bit to decide on the radiation.  I just hope the docs aren't surprised that the radiation isn't done.  I've contacted their offices numerous times to discuss this issue.

Friday, October 26, 2018

Now, a Treatment Dilemma

Last Thursday, just before I left my office for my chemo treatment, I got a call from ProCure in New Jersey.  ProCure is the proton beam therapy center that Sloan Kettering wanted me to go to for proton beam radiation.  They were calling me to tell me that my insurance had finally approved the treatment.  I've since gotten a letter from my insurance company outlining the approval.  They consider the treatment to be experimental, but they've approved me for a one-time-only treatment. 

But, since we decided to pursue this therapy in August, my tumors have continued to grow and I have a new CT scan.  So, I contacted my doctors at Sloan Kettering to be sure that they still want me to pursue this option.  A week later, they still haven't decided.  I know that part of that time, they were waiting to receive my CT scans on a CD.  I'm dumbfounded that they still use US mail and CDs to exchange this information.  Doing that kind of healthcare information exchange is what I do for a living.  Yet, a major teaching hospital and one of the top cancer centers in the world still rely on US mail to exchange results.

Hopefully, I'll have an answer in a few days time.  If they still want me to pursue this option, we will have to decide whether to also continue chemo or if I should take a break from one while doing the other.  Basically, I would need to do a short trip to NJ so they could do measurements and get me set up for the treatments.  They would do a full body mold that would hold me in place during the treatments, and they would then use some sort of imaging to direct the beams during the treatment so that it gets to the precise location they want to be targeted.

Then, 2 weeks after the initial visit, I would return for an 8 day stay, and I would receive 6 treatments over those 8 days.  I would be able to work remotely from NJ while I needed to be there, so that should minimize the impact at work.  My wife would need to go with me (a vacation in New Jersey - how exciting!), and we are hopeful that she could work remotely as well.

My biggest concern is leaving the dogs at home with my son for the time we were gone.  That's a lot to ask of him, but he has said that he thinks he could take care of them while we were out of town.

It would be the longest period of time we'd ever left a child at home alone.  He is a full grown adult, so I hope he can handle it, but I still worry.  It's a parent's prerogative to worry about these things.

I'm hopeful that if radiation was successful that I might get back into the gym after treatments, but I'm thinking too far ahead there.  I need to get the treatments first, and then worry about the post-treatment issues.

My wife suggested this week that we should consider getting a reclining chair at home.  I spend so much time in the living room these days, uncomfortable on our couches, that she thought a recliner might be good for me.  I do spend a lot of my time at home just resting these days, so maybe it makes sense.  But, it also has me screaming "grandpa" inside my brain.  Aren't recliners for old people?  I remember my grandfather spending his later years in his recliner at home.  He had it positioned so that he had the best view of the TV in the house, and after dinner, he could always be found in his recliner, commanding the remote control.  How did I get so old and frail?

But, it probably makes some sense, so we are going to do some shopping this weekend and see what we find.

Lastly, I tried to resign from Sugarbush this week.  After 18 years, I just don't think that I can pull it off anymore.  I explained that I didn't think that I could work enough and that I thought I'd be a burden rather than an asset.  But, my boss and the ski school director had already discussed this possibility, and they declined my resignation.  They are going to let me work as little or as much as I can handle, and I'll get to keep my ski pass.  I am guessing my wife will keep her pass as well.  I'm grateful for the offer that they've extended to me.  It will allow me to stay involved in the ski school without much of a commitment.  I'll work the busiest days of the season, no more than one day per weekend, and I should still be able to get enough rest (in my new recliner) so that I'm good for the work week.  It's all a matter of finding balance these days.

I'll post an update here as soon as the doctors decide on the next treatment steps.

Monday, October 15, 2018

Loss

As I enter my 4th week of not being able to train at the gym, I'm really starting to wonder about the potential permanence of some recent changes.

I am hopeful that the new chemo will work and reduce my tumor size.  If that happens, I should be able to reduce my pain medication.  That might allow me to train in the gym again.  It might allow me to do more than go for an easy two mile walk as my "exercise".  I did actually walk 5 miles yesterday, and I'm actually a bit sore from doing that.

How far will this extend?  Right now, I'm guessing that I'm not going to be able to ski this winter.  I can't ski with this much pain medicine in my system.  I can't function at my job at the mountain.  So, after 18 seasons, am I done being a ski instructor?

Will the nausea ever decrease?  Or, am I in a battle just to get some calories into my system, and that's the new normal?  Yesterday, after the aforementioned walk (in Stowe on the bike path), my wife and I went out to dinner with friends.  I ordered a side salad and an appetizer, but to be honest, nothing on the menu looked palatable.  I managed to eat most of the salad and I started on my scallop appetizer when my body quickly and violently rejected the food I was trying to force down.  It feels as though my body simply won't eat any vegetables right now.

After the salad came back up, I was able to eat my scallops, but the beets and grapefruit that came with the scallops went untouched.  Is this the new normal?  Will I ever return to having a normal appetite?

Because of the pain meds, I'm not driving.  As long as I'm on this level of medication, I don't think I'm going to be able to drive.  Should I simply accept that I won't ever drive again?

It feels like my identity is being stripped away.  For 20+ years, I've defined myself as an athlete of some sort.  For years, I did triathlons.  Then road racing.  Then ultramarathons.  I never imagined that I'd give up being a runner. 

But then, at just the right time in my life, CrossFit came along.  For the past 8 years, that has been my obsession.  I know I'll never touch my lifetime PRs in the gym again, but will I ever be able to lift again?

If I lose the ability to train, to teach skiing, to do something as simple as driving, what is left?  Fishing?  I have to admit that I haven't been on the rivers since June right now.  Part of that was due to stream conditions, but part of it was malaise from the cancer.

I've been thinking that maybe it's time to start selling my fly fishing gear.  I know that I'll wait until next spring before I make a decision, but I've been thinking about it.  I know what my fly fishing gear is worth, and I can get a lot of cash if I sell it myself.  If my wife needs to sell it on her own in the future, she will never get fair value for the equipment that I've accumulated over the years.

I guess I'm dancing around the real issue here.  This feels like the beginning of the end, to be honest.

Maybe the chemo will be wildly successful.  Mathematically, the chance of significant shrinkage of my tumors is probably around 10%.  Stabilization is a 1 in 4 bet.  Not great odds, to be honest.

Median survival for people on the chemo that I'm on now is 16 months.  It is only used after a number of other treatments have been tried, which is exactly where I am.  It does increase survival even in cases where the tumors continue to grow, but the more they grow, the lower survival time is expected to be.

I hate to be so maudlin, but this disease is going to kill me at some point in time.  And, it's starting to feel like I'm on final approach.  I hope I'm over-reacting to a rough patch, but I also need to be honest with myself.  Maybe I'll delete this post in a month because I'm feeling better, I'm back in the gym, and I'm ready to take on ski season.  But, I honestly doubt that this will be the case.

For now, I feel empty.  Like I've lost a huge amount of what makes me who I am.  I'm at a loss.

Friday, October 12, 2018

Moving on

Since my last post, I think I managed to hit a nadir and I've gradually turned things around.

Let me catch you up.

So, insurance still has not approved, nor have they officially denied, my request for proton beam radiation.  But, I simply can't wait anymore.  Things have been getting worse and it was time for action.

Since I last posted, the pain issue really exploded.  My pain levels were drastically increasing and my pain medications just weren't keeping up.  It really peaked on a Monday and I had to call in sick.  I couldn't get in to see my primary care provider, so she suggested that I visit the Emergency Department at our local hospital instead.  So, I did that.  I spent about 5 hours there, and at the end, they just threw a new prescription at me for a slightly stronger pain medication and they sent me home.  I was supposed to follow up with my PCP on the pain medicine.

So, the next day, I called in sick again and used the new pain medicines.  They didn't help.  By now, my PCP had given me her cell phone number and she and I were texting back and forth.  On Wednesday morning, when things weren't better, she suggested that I go to the ED at one of the two teaching hospitals in our region.  Since my wife and I work in Burlington, I had my wife take me to the ED at the University of Vermont Medical Center.  I ended up spending the entire day there.

The first thing they did was just try to get my pain levels under control.  It took two injections of morphine to establish a baseline level of control.  Four hours later, it took three more injections to keep things under control.  But, the good thing about this hospital vs. the one I visited on Monday is that they wanted to figure out why my pain levels were so much higher.  They did some imaging and found that my tumors had grown significantly since August.  The larger tumors were creating pressure on nerves and that was causing the pain.

Late in the day, the doctor I'd been working with (Dr. Claus - the poor guy must have been tortured his whole life for that name) suggested two options.  The first was that he could take a guess at a prescription that would work going forward and send me home.  Or, I could be admitted and have a pain specialist from the oncology clinic work with me to establish control of the pain.  He offered them to me as almost a 50-50 choice, assuming that I was averse to being admitted.  But, to me it was a no-brainer and I chose to be admitted.  That afternoon, before they could even admit me, I was interviewed by two pain specialists.  They knew about the tumor growth.

By the time I'd been admitted, they had a plan they wanted to try - Oxycontin with oxycodone for breakthrough pain.  I've found out since then that there is a lot of controversy about whether or not Oxycontin really works for the full 12 hours as advertised.  In something like half of all patients, it works for less than 12 hours, and it needs to be supplemented with other pain medications.  So, we started the Oxycontin on Wednesday night and I was able to sleep through the night for the first time in a while.

On Thursday, the doctors seemed quite happy with themselves, having found something that worked so quickly.  I was discharged late Thursday afternoon with 2 new prescriptions.  I was happy that we had a solution.  Until, that is, we reached the pharmacy.  It turned out that Oxycontin isn't covered by my insurance.  I had two options - pay $541 out of pocket or pay for a lesser amount that I could choose.  But, if I chose a lesser amount, the rest of the prescription would be invalid.  I was torn.  I knew that if I didn't fill the prescription, I'd end up back in the hospital.  I felt like it would be justice for my insurance company to have to pay for the re-admission if they refused to pay for the medication.  But, I'm not truly that petty, I didn't want to go back to the hospital, and I wanted the pain to be gone, so I paid the money.

In the end, it turned out that, with prior approval, my insurance company will pay for the brand name Oxycontin, but not the generic.  I've now gotten that prior approval, and my local pharmacy is carrying the brand name just for my needs.  That's one advantage of living in a small town, where the pharmacists know me and my condition well.  They are willing to change their stock just to help my needs.  And, UVMMC turned over my co-pay issue to a social worker.  Through a grant, I got back about 60% of the cost of the prescription.

So, I now had my pain under control.  But, these new pain meds mean that I can't really drive anymore, which has created a new burden for my wife.  She had always been the driver on our commute, but I usually dropped her off in the morning and took the car for the day.  She is now dropping me off, and she needs to come with me on every medical appointment.  I feel bad for the burden on her, but I'm not going to risk driving with pain meds in my system.

So, with the pain under control, I still had two issues to fight.  First, I needed to get treatment re-started.  It's been two months since I found out that the last treatment failed - two months of allowing my tumors to grow without fighting back.  At this point in time, I have to assume that the proton beam therapy is not going to happen, and we need to start a systemic treatment as an alternative.  And, I had to work on my nausea, which had been getting worse by the day.

First, let's talk about treatments.  When I was last at Sloan Kettering, the medical oncologist that I see there had suggested a drug called Eribulin.  It is an older drug that's been around for a while and I think it's often used in breast cancer treatment.  My local medical oncologist had suggested Trabectidin, which is a newer drug that is specific to sarcomas, if not just liposarcoma.

As the prospects for the proton beam therapy dropped, and my symptoms began to increase, I started to rely more and more on my local medical oncologist.  She scheduled me for a CT scan on Wednesday of this week.  That was followed by an appointment yesterday - Thursday.  In the appointment, she said she was fine using either of the drugs, but that she'd gone along with the Sloan Kettering recommendation and scheduled me to start Eribulin immediately.

I had no qualms with that.  I am concerned that Eribulin tends to have more side effects than Trabecticin, but that isn't the most important thing right now.  Getting started with a treatment was the most important thing.  So, I did have a treatment yesterday and I'm now on Eribulin.  It's given in a 21 day cycle, with infusions on days 1 and 8 and a Neulasta injection on day 9.  I will probably end up doing the Neulasta with their OnPro technology - a high-tech patch that goes on your arm at the end of chemo and does the injection automatically 24 hours later.

So, treatment is taken care of for now.

The nausea problem peaked last weekend.  It got to the point where I vomited from the nausea 3 days in a row, and I was barely eating anything.  I was resorting to milk shakes made with Ensure just to get some calories into my system.  Most days, I was able to eat fewer than 1000 calories.  At my appointment yesterday, I found out that my weight has dropped almost 20 pounds since August.

Early this week, the doctor had me greatly increase my dosage of Compazine, an anti-nausea drug that I have a prescription for during chemo.  I was taking it once a day at 5mg.  They had me start taking 10mg every six hours and the nausea now seems to be at bay.  I had a bit of nausea this morning, the day after chemo, but not so bad that I vomited.

Hopefully, the chemo won't increase the nausea beyond manageable levels.

So, that's it.  Pain is under control.  Nausea is under control.  And, I've started a new treatment.  Now, we wait and hope the treatment works.


Tuesday, September 18, 2018

Next steps - the Kobayashi Maru

Since my last post, I've made one more trip to Sloan Kettering in NYC.  To be honest, I don't like how things are going right now.

The surgeon that I saw in early August doesn't really want to operate, and he's one of the more aggressive surgeons out there for liposarcoma.  He will operate when others don't want to operate.  He's the guy that people go to see when their local surgeon doesn't want to do any more surgery.

He sent me to a radiation oncologist instead.  I was mostly disappointed in that visit, because it seemed that the radiation oncologist wasn't really prepared when I got there.  It seemed like he was making stuff up while I was sitting there.

Essentially, he didn't want to do conventional radiation, because the beam of radiation would pass though a spot where my bowel has been re-constructed.  He is worried that the radiation could burn a hole in the bowel, and because of prior radiation, it could be very difficult to get in there and do the surgery to repair the hole in the bowel if it occurred.  It would be an emergency surgery, full of risks.

But, he did have an alternative idea - proton beam radiation.  Proton beam radiation, unlike normal photon beams, can he halted at a particular depth.  So, it was his reasoning that we could make the beam go far enough to reach two tumors, but not go so far that it would damage my bowel.  Of course, he said there were still risks, but he thought that this was the way to go.

He also warned me that proton beam radiation is very expensive and insurance companies tend to fight it as a treatment option.  While I was still at the hospital, he talked briefly to the surgeon and they agreed to take my case to their tumor board to discuss options.  This was on 8/22.  Then, for weeks, I heard nothing.  I thought that perhaps they were fighting my insurance company.  I finally heard from my surgeon on 9/14.  They had finally agreed to a plan.

I have four total tumors right now.  One of them could easily be operated on.  The other 3 are not great candidates for surgery.  So, the plan is to attack those 3 tumors with proton beam radiation and then enroll me in a clinical trial to try an immunotherapy drug to target the 4th tumor after radiation.

They are allegedly working on the insurance approval right now.

I checked my insurance company's web site yesterday, and found nothing about the pre-approval for the radiation.  Perhaps they don't list items until a decision has been made, but it just seems to be taking forever.

While this process drags on, three things have been occurring.  First, the pain I'm dealing with is getting worse.  We increased my oxycodone prescription a couple months ago, and the next time I need to increase the dose, I need to see a pain specialist rather than my primary care doc.  I'm at the limit that VT law allows my PCP to prescribe.  The next step is likely to be something like a morphine pump, something I've been hoping to avoid.

I'm also dealing with increasing fatigue.  I am napping all of the time.  I fall asleep in the car on the way to work.  I fall asleep on the way home.  I fall asleep on the couch as soon as I get home.

Yesterday was all of those things.  I slept on the way to work and on the way home.  We skipped the gym on squat day, a day that I hate to miss, because I was so tired.  As soon as I got home, I fell asleep on the couch.  I woke up about 8:00 and ate a sandwich for dinner.  And then, I fell asleep again.  At 10:00, my wife woke me up to go to bed.  And, at 6:45 this morning, having seemingly slept for most of the past 24 hours, I could barely drag myself out of bed.

Lastly, I have zero appetite.  I never eat breakfast.  I rarely eat lunch, or I eat something very small for lunch.  On the weekends, I never bother to eat breakfast or lunch.  And then at dinner, even with the medical marijuana, I still don't feel hungry.  My weight is gradually decreasing.  I think it's been my fairly regular attendance at the gym that's been stopping it from dropping faster, but if the fatigue starts to mess with my gym attendance, I'm afraid that my weight will plummet.  I'm certainly not skinny.  But, to be honest, I don't want to lose any weight right now.  I need to keep as much muscle mass on my body as possible, to be ready to handle the rigors of radiation and immunotherapy.

For the first time since this ordeal started about 3.5 years ago, I feel like I'm starting to fall behind.  Previously, it felt like we always had answers, another treatment option, I had the gym and my training to focus on, and I had a focus for taking on this disease.  Right now, it feels like I'm starting to lose some of that.

I'm also somewhat depressed by something my employer did to me recently.  I will admit that during my last chemo, I was far from 100%.  I tried hard to keep up, to do a good job, and I was even working up to 60 hours per week during chemo.  But, it wasn't good enough for my employer.

The Friday before Labor Day, my employer presented me with an "offer".  Basically, they were planning to demote me for poor performance, to decrease my salary by 35%, and they asked me to sign a form that admitted I was incompetent at my job.

I spent the weekend trying to chase down an attorney to see what my options were.  What I discovered is that despite my cancer, at-will employment seems to trump the ADA and EEOC laws, and I really had no means to avoid the situation.  Two attorneys suggested that I not sign the form, but I was told that they could impose the job and salary on me at will.  So, I did refuse to sign the form, and the company imposed the new job and new salary on me.  So, now my wife and I are staring at bankruptcy on top of everything else that is going on.

If they had fired me, I would have been eligible for unemployment, I would have filed for bankruptcy immediately, and I would have started the waiting period to collect social security disability insurance.  Instead, they left me with some income, but not enough.  So now, we will struggle for 3-12 months (it's hard to predict how long we can hold out) and then we will have to file for bankruptcy.

Another hope that I was holding onto was that I'd be able to go onto disability insurance when I'd reached the one year mark at work.  That insurance basically pays 2/3 of your salary.  At my old salary, again, we could have gotten by for a while on that level of income.  But, 2/3 of my new salary is now less than half of my old salary, and while we may still take that option, it would again mean bankruptcy.

All in all, I think we've held up pretty well for the past 3.5 years.  If you count my prostate cancer before that and the rare form of melanoma that my wife had, it's been five years of dealing with cancer.  But, we are now approaching the point where we are not going to be able to make it on our own any more.

My daughter is currently doing a semester in Spain.  She sent me a WhatsApp message last night, asking if my wife and I might be interested in meeting her in Spain for a long weekend in Bilbao.  We would love to do that, but it's simply not possible given this turn of events.  I was almost in tears as I read her invitation and thought about how impossible it was.

Oh yeah, two different attorneys have looked at what my employer has done to me.  Both of them described it as the most unethical thing that they've ever seen an employer do.  At the same time, they said that it appeared to be completely legal.

What kind of system do we have in this country where someone's life can just be destroyed because you were unlucky enough to contract a rare cancer?  I know I'm not alone in this situation, but for a while, it seemed like we'd be OK.

Now, I'm left wondering if we are going to be able to afford to eat, or to even feed our pets.

Please don't feel sorry for me.  I've had a great life.  I have an amazing family and support system.  I'll get through this somehow.  I'm sure that many others have been put in worse situations than mine.

But, it's certainly not how I expected that the final years of my life would go down.

Monday, August 13, 2018

What a waste of time and resources

I was at Sloan Kettering last week, getting a CT scan after 3 months of chemotherapy.  This was a rough round of chemo and I dropped 17 pounds in 3 months despite exercising very little.  To be honest, a lot of the lost weight was probably muscle mass.  I am really struggling in the gym these days, from both a strength and an aerobic perspective.  I honestly think my fitness right now might be the worst it's been since 1998.

So, after all of those side effects, at least I knew I'd been taking a chemo that has worked for me in the past and I was optimistic that I'd get good news.  Regretfully, my optimism was unfounded, and the tumors continued to grow right through the chemo.

I have four tumors right now, and three of them grew.  Two of them are in a spot that is tough to operate, because it would require an extensive resection of my liver, and it would require a liver specialist as a second surgeon.  My surgeon was not crazy about that option.

The chemo that I could try next doesn't have a great success rate.  Clinical trials would require me to be in NYC one day every other week - something I can't pull off right now.

But, my surgeon, remembering the good success I had with high dose Image Guided Radiation Therapy (IGRT), suggested we try that again for the two tumors near my liver.  The radiation oncologist agreed that this makes sense, so that is the next treatment for me.

The bad thing is that only 2 of my 4 tumors will be targeted, although one of the tumors that won't be targeted is well differentiated, small and growing very slowly.  But, the radiation will not go after one of the other major tumors, meaning I might need surgery after radiation.

The bosses here at work are being supportive, but I know they aren't really happy.  They would prefer to have me in the office full time rather than being out getting treatments.  For this next treatment, I have a consult with the radiation oncologist next week in NYC, then a day to fit a mold around my body to hold me in place during radiation, and then finally, five straight days of treatment.  I'll need to be out of the office for all of those days, although I hope to work from NYC during the radiation itself.

I'm afraid of what my travel costs are going to be as well.  Finances are pretty tight right now and the cost of a week in NYC, plus the train for 3 trips to the city will be expensive.  I'll do my best to figure it out, but things are going to be tight for a while.

So, after three months of a rough chemo, the news wasn't good.  But, the doctors have a plan and I'm going to listen to them and continue with the treatment.  The side effects from the radiation aren't great, but they are less intense than chemo.  It's mostly nausea and fatigue that I'll have to deal with.

I was looking forward to the arrival of fall and hopefully some rain so I could get out fly fishing again.  I've hardly fished at all this year due to the high temperatures and the drought we've been dealing with, and now, by the time conditions improve, I'll be dealing with the side effects from radiation.

My next scan will be in late November, and that will determine whether or not I can teach skiing this coming winter.