Monday, November 16, 2020

The One Percent (November 2020 Scan Results)

 In mid-October, Anne-Marie started to lose feeling in her legs.  Numbness and pain was radiating up one leg and then the other off and on, progressively getting worse.  By the time November arrived, she was having trouble walking.  We believed it was a neurological side effect caused by the whole-brain radiation.

Anne-Marie didn't have a bone scan during the August series of scans, so we scheduled that for the last week of October.  Because the scan was performed during the chemo "off week", we didn't get results for a week.  On November 4, Anne-Marie had the consult with Dr. Solti who told her that a new tumor had been discovered in the the L4 vertebrae of Anne-Marie's spine.  Unless around the same time, Anne-Marie herniated a disc in this same area of her back, the doctors believed this was the cause of the mobility issues, not the whole-brain radiation.  It was a 99% certainty.  We scheduled an MRI to be sure.

The MRI was performed on Thursday, November 12 and results were revealed the next day.  The doctors were wrong.  The cancer that showed up on the bone scan was not a tumor in the L4 vertebrae; the MRI revealed that it really was several tumors that were in the lower part of the spinal cord.

The dozen tumors that were in Anne-Marie's brain have spread into the spinal cord and formed six to eight more tumors in the lower back area. These tumors are inside the spinal cord itself and are pressing against the nerves and axons in the lower spine that control lower body function.

Spine MRI with tumors circled

Dr. Solti has informed us that this is a much more serious and complicated situation than it would be if the cancer was located in the bone.  The implications of the mobility and brain function threat is enough to make anyone completely freak out. 

Currently, Anne-Marie is having extreme difficulty walking (not enough to keep her from doing basic things around our home) and needs a wheelchair any time she leaves the house.  Because of the urgency of the situation, we are being rushed into radiation treatment starting today.  Dr. Siddiqui, the radiologist, believes the treatments could offer relief as soon as the end of this week.

This does not, however, impact the long-term situation.  We need options for chemo treatment that will help Anne-Marie's brain.  We are scheduled for a consult with Dr. Modha, the neurosurgeon, to discuss solutions this Thursday, November 19.

We've been on the right side of the percentages before and know what it's like to celebrate those victories.  We would never fault ourselves for the celebrating. 

This time of wrong percentages is one for weeping.  There is no shame in that.

Monday, October 05, 2020

September of Septembers

 The September of all Septembers is over.  This is what happened:

Thursday, 9/3: Scan results came in (see my last post)

Friday, 9/4: My birthday.  I'm officially into my 40's. Yay!

Labor Day, Monday, 9/7: A historic windstorm hit the Pacific Northwest knocking down a tree in our back yard and takes out the power service to our house in the process.  The tree missed hitting the house by inches due to the way it snapped off at the base.  We're thankful for God's protection.

Tuesday, 9/8: Our 19th anniversary.  Winds continue and eventually knock down a second tree.  This one in the front yard.  We decide to get a hotel room so the kids can start their first day of online school in the morning.  As the winds continue through the week, summer wildfires that are usually fought and contained in the forests and mountains travel quickly into the cities in the foothills. Multiple towns are destroyed by the fire.

Wednesday, 9/9: The kids start 4th and 5th grade from a hotel room not even located in their school district. I secure a permit from the city to re-hook the power then work from the hotel room since we don't have internet at the house.  The utility company cuts off power to the house so the work can be completed safely.  A friend and I do the repairs on the connection to the meter and call the utility company to come back and do the final hookup.  Smoke from the wildfires that is now moving toward the city is beginning to impact the air quality to the point where it's unsafe to be outdoors. The utility company makes it to our house to restore power a little before midnight. 

Thursday, 9/10: Power is back, so we start packing for our...

Friday, 9/11 through Sunday, 9/13: 19th anniversary trip to Astoria, Oregon where the air quality was rated as only "unhealthy" rather than "hazardous."

Tuesday, 9/15: Whole brain radiation treatment begins with the first of 10 treatments.

Thursday, 9/17: By the time the third treatment is finished, Anne-Marie is so sick from the radiation and or pre-meds, they put her on steroids.

Sunday, 9/20: Steroids have fixed the problem, but Anne-Marie gets thrush from the steroids and cannot sleep.  The smoke from the wildfires begins to clear.

Monday, 9/21 through Monday 9/28: The last 6 radiation treatments finish up with intermittent sleep. Anne-Marie starts losing her sense of taste due to the intensity of the radiation treatments.  Her persistent cough begins to return after a month layoff of chemo treatments.

Wednesday, 9/30: The month is over and I want a long nap.

Now that we're in October, the smoke is gone and the wildfires are beginning to be contained.  Chemo for Anne-Marie's lungs re-starts on Wednesday, 10/7.  We have food and power and internet. We even have active education of our children happening.

That's what we have, so I assume that's all we need for now. Signing off from Vancouver.

Thursday, September 03, 2020

The End of the 6th Week (August 2020 Scan Results)

There were three ways this could have went:

  1. Both the brain and lung scans coming back worse because the wrong treatment plan was chosen in the first place.
  2. The lung scan coming back better due to the current chemo treatment being effective for the lungs but the brain scan coming back worse due to the current chemo treatment being ineffective for the brain.
  3. Both the brain and lung scans coming back clear or improved allowing us to move toward minimal treatment for maintenance.

Of course we wanted the third option.  A treatment plan that we were told would not work for the tumors in Anne-Marie's brain that actually ended up working in the brain would be a bonus.  A miracle really.

The first option was news we couldn't have.  Finding out that neither the cancer in Anne-Marie's lungs nor the cancer in the brain was being reduced would have placed us in a trap.  The struggle Anne-Marie faced trying to breathe earlier this summer was so intense and frightening that abandoning treatment of the lungs would not be viable.  But the doctors did not intend to wait to treat the brain (unless the option three miracle happened).

The results of the scan showed that we are facing option two.  The tumors in the lungs have shrunk by 25%.  We were pretty sure something good was happening because the coughing and breathing problems started going away a month ago.  Going back on Taxol treatments was a strange transition after two failed treatment plans, but we can't hate the results.  Life has been much more livable since Taxol and the treatment side effects are much more mild than what we remember from when Anne-Marie took it in 2006.

But along with the 25% reduction, we got the expected news that the brain tumors have progressed.  The number of tumors has increased from 10 to 12.  Actually that's just my count.  The radiologist isn't even attempting a count at this point.  There's a lot.

Example of Whole-Brain Radiation
Example of Whole-Brain Radiation

With the largest of the brain tumors being one quarter inch in diameter, they aren't causing symptoms at this point.  Even still, Dr. Siddiqui, the radiologist believes we should act soon and wants to move forward with a two-week series of whole-brain radiation treatments.

These treatments are exactly what they sound like: radiating all of the cells in the entire brain.  The treatments are known to cause fatigue and short-term memory loss.  Because of this, the radiologist prescribed medication normally used for Alzheimer's starting today to help with memory loss issues.

This is a "one time shot" treatment (meaning that it's only intended to ever be attempted once in a lifetime) that will take 10 minutes, five days a week, until 10 treatments are complete.  Dr. Siddiqui believes he can eliminate all of the tumors using this treatment, which is great to hear.

So is this good news or bad? I think you could take it many ways, but it's really just an entirely bad situation that could have been made much worse had the news been different this morning.  We thank God for this receiving this small piece of a much larger picture.  

Sometimes life has "option twos".  Utopianism screams for option threes while fatalism shouts for option ones.  In reality, we often end up walking the middle road wishing we could see the solid edges.  Dr. Solti and Dr. Siddiqui feel like this is THE plan that will get our best results, so we are moving forward.  

As soon as we finish that 19th anniversary vacation.  Radiation treatment starts the week after we get back on Tuesday, September 15.

Sunday, August 02, 2020

The Six Weeks

The brain scan that I talked about on my last post happened two weeks ago to try to understand how effective the last treatment (not the current treatment, which is Taxol) was on the cancer in the brain.  A week ago we were given the results.

They found 8 more tumors in Anne-Marie's brain, which brings the total to 10.

It's hard to find any comfort in the oncologist telling us they are all "small" brain tumors, but we'll take all the comfort we can get while understanding very clearly that Anne-Marie is under full assault by this deadly disease.

The oncologist has formed a plan to continue the Taxol treatment for one more three-week cycle then on the fourth week, another set of scans will be performed.  Last week was Taxol treatment #3, this week is a week off, then three more weeks of Taxol, then scans the next week, for a total of six weeks.

Dr. Solti has told us that she does not expect the Taxol to help the tumors in the brain but wants to continue through the next cycle to give some relief from the tumors in Anne-Marie's lungs.

The proposed treatment after week six is to return to the Xeloda/Tykerb chemo pill regimen that happened back in 2018.  It is the most ruthless chemo we've faced in the entire 14 years.

We are between the jaws of two challenges.  The doctors are already telling us it won't happen, but we need the scans to come back clear.  Our family appreciates your prayers during this time.

Five weeks to go.

Wednesday, July 15, 2020

The Way Through

The scan results from last Friday have come in.  The chemo isn't working.  Cancer in Anne-Marie's lungs is growing, which is why the bad weeks in between treatments have been so bad.  The chemo was doing all the bad things chemo does, but without the benefit of killing the tumors.  

Dr. Solti has decided that Taxol will be our next option.  This was the original slow-drip chemo infusion that Anne-Marie started on way back in the fall of 2006.  It was a harrowing experience, but back then it was paired with Adriamycin and given in a very intense dose once every three weeks.  Since then, oncologists have changed the typical prescription to a low dosage for three weeks with a one week break following.  A brain scan will happen by end of month.

After two failed treatments in 4 months, we're desperate for something to work.  That desperation is greater than the disappointment.  Hope is born of suffering, so if the only way out is through, we just need God to show us the way.

Monday, July 06, 2020

The Chemo Trough

We are six weeks into some chemo that I can't pronounce or even remember what it's called.  I just know it's miserable.  

I believe this is the seventh time Anne-Marie has done chemo.  Usually chemo is either once every three weeks (aka one week on, two weeks off) or every four weeks (one week on, three weeks off).  This time it's TWO weeks on, one week off.

The hardest part of the chemo cycle is the "trough".  That's where your immunity drops, your strength bottoms out and your stomach revolts.  During the typical three-week cycle, the trough is somewhere between days 9-15.  After that the body starts to recover, the bone marrow cells start to come back and bring white blood cells with them.

This chemo was going ok with some predictable nausea and an extreme amount of fatigue.  Then we hit day 17.  Anne-Marie's fever spiked to 102 (normal is 97 for her, so 102 is very high).  Pain, fatigue, weakness.  And coughing.  Intense coughing.  Of course it was on Saturday, so I called the on-call oncologist.  The doctor was one we'd never worked with before.  He told us we could try antibiotics and "cough pearls" or we could go to the ER.  We opted for the former.

Things got better over the next few days to be ready for the cycle to start again after day 21.  Anne-Marie's oncologist also sent her for a chest x-ray before the treatment to see what was going wrong.  The x-ray showed that there wasn't any horrible virus--which we all know we don't want--but rather that Anne-Marie's lungs are just have several tumors in them.  The tumors are irritating her lungs and the right one is filling with fluid as if she has pneumonia.  They are considering draining* it.

The second cycle started on June 16 and also went well until we hit last Friday, day 16.  Fever spiking then dropping.  Pain.  Shortness of breath.  Anne-Marie was coughing so hard she was seeing flashes.  It was a national holiday, so the on-call doctor ended up back on the line.  I think we found the trough.

Antibiotics are now back on the daily schedule as they attempt to fight the fake pneumonia.  I'm hoping this let us know where to look about 3 weeks from now.  

Quarterly scans are this week.  Results will be in on 7/13.  We appreciate your prayers and we appreciate the efforts of everyone that's doing their best to keep the other disease from spreading.  Your efforts make our lives, and the life of every high risk person, a little easier.

So every time you go to the doctor's office and make sure to wash your hands, or you choose keep your distance at the grocery store, or attend Eli's mandatory work meeting and decide to wear a mask in order to be considerate to others, know that it impacts your community.  I know that if you caught the virus, you would mostly likely be fine after a few weeks, but there's an entire segment of the population that you may not realize you're connected to.  Those people's lives touch someone who would face much tougher odds if they became infected.

We do not care about the political arguments.  We're just trying to do whatever we can to make sure our loved one is OK.

*You probably don't want to know.