Getting a Good Start

Today was Day 5 of David’s 15 days of radiation.  We just drive the 130 mile round-trip daily to Moffitt Cancer Center in Tampa from SW Orlando.  The radiation therapy sessions are now at 2:30 so we miss both rush hour traffic times. That, in itself, is a stress-reducer!  HOWEVER, today was an exception.  Right after getting on the freeway, the traffic suddenly began to slow to the point where 10 MPH seemed like we were really moving along.  After a couple miles of that, we saw an electronic sign that read, “Congestion ahead 6 miles.  Crash. Two right lanes (of 3) closed.”  After an hour of creeping, we made it past the crash site where, of course, there was no sign of an accident anymore.  By 2:30, the time of the appointment, we were only halfway to Tampa.  No sooner had we gotten up to speed when the heavens opened with a horrendous thunderstorm and the traffic slowed to a crawl again for many miles.  But when David pulled in to Moffitt at 3:30 for his 2:30 appointment (we had notified them), they took him in almost right away and we were still on our way home before rush hour traffic.  Near home we were blocked from our usual entry into Celebration via Celebration Blvd. because the storm had affected our home town area, too, and lightening had hit one of the new 3 story apartment buildings along the boulevard, destroying the entire top floor.  Water cannons were shooting at it from several directions.  There must have been 10 fire trucks there!  Returning to our cozy home seemed especially sweet tonight…we weren’t a part of the traffic accident, we stayed on the road safely during the storm, and our home didn’t get hit by lightning!  Thank you, Lord.

In the past 2 weeks we have had visits from sons Phil and Pete and also from friends, Ted and Joan.  It is easy for folks to think that it would be too much for us to entertain guests with everything else that is going on but, first of all, we don’t treat them as guests.  They pretty much fend for themselves.  Secondly, they provide wonderful distractions for us, expanding our current daily experiences from being merely medical ones.

This last week it was especially helpful that Dr. Ted was 2014_04_10 Ted & Davehere since David started having sharp, stabbing pains in his right chest, especially front and back, not so much the side.  A consult with Ted assured us that using more of the Hydrocodone pain medication was perfectly fine.  With that increase, David has been more comfortable and has actually been more alert and engaged in daily activities instead of sleeping most of the time.  Yesterday another appointment with a radiation therapist (MD) was very helpful.  David’s right chest pain could be from micro-breaks in his ribs or the connective tissue from his coughing (which has actually been under good control) or from tumor pressure against a nerve bundle somewhere (more likely).  Bottom line is that if it is the former, there is nothing to do for it and if it is the latter, radiation is the best treatment and that is already underway.  Just take the pain meds as needed, they said, echoing Ted’s recommendation.  There is real comfort in knowing that all is being done that can be done at this time.

We got the results back from the OctreoScan that David has had annually since 2000 for his carcinoid tumor problem.  Nearly all of the hotspots on the PET scan are carcinoid related.  In the past, that would have seemed devastating to us.  Our world was rocked in 2008 when ONE carcinoid metastasis was found.  Now we are relieved that so many of those areas are “just” carcinoid which is very slow growing.  Of course, the lung lesion wasn’t carcinoid (no surprise) since we know that it is squamous cell cancer and the 2 tiny liver spots are squamous, too.  He will deal with the lung lesion treatment now and cross the liver bridge when we get back to Michigan where a battery of appointments awaits us on May 12.

David is pretty anemic so he tires easily.  His hemoglobin is 9.8 now where normal is 13.4 – 16.9.  If it takes a nosedive, he can have a blood transfusion but it has to drop to somewhere near 8 to be worth the inherent risks of transfusion.  The doctor did say he seemed dehydrated so a couple days last week he had IVs of fluid to plump him up.  He is trying very hard to drink his 8 glasses of fluid a day which is difficult because he has no sense of thirst.  However, his eating has improved now that the antibiotic for pneumonia is out of his system and everything no longer tastes metallic.  Last night we had our favorite: Logan’s Road House has the BEST baby back ribs so we split a full rack and had the loaded sweet potato … and there was no need for a take-home box!

On top of this, at the end of March I awoke with a sharp pain in my right arm if I extended it or rotated it or even thought about doing so.  We made quite a pair the next day at the hospital with me wheeling David into the building in a wheelchair (because we had to go all over the place for appointments, too far for him to walk) using my one good arm.  We had to laugh at ourselves….pathetic.  Dosing with Naprosyn and immobilizing my elbow in the armhole of my jacket improved it in a few short days so it is now back to normal.  It is humbling when the caregiver isn’t in such great shape herself!  It is also a good lesson for me that I do need to take care of myself, too.  I have now resumed my morning walks and my back exercises which have been sorely neglected lately.

While David was in having the scans done a couple weeks ago, his internist, David Young, from Holland called to find out how the two of us were doing.  Dr. Young and I had a very good talk on the phone.  It is in such moments of kindness that we feel God’s blessing being showered down on us.  Your emails, card, and blog comments add to that shower!

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The Smile In His Eyes Is Back

A lot can happen in 10 days…

In the last blog, I mentioned that I had just sent David’s record via FedEx to his head and neck surgeon in Ann Arbor.  The U of M Hospital’s Tumor Board totally agreed with the course of treatment recommended by the medical team at Moffitt Cancer Center in Tampa.  That makes us much more comfortable going ahead with the radiation therapy of his lung lesions.

However, David had been fading.  He would sleep nearly all day as well as all night.  His blood pressure was extremely low (it usually runs high) and he was very light-headed.  We also had some questions about his kidney function.  He looked and behaved like someone who had already gone through radiation therapy … and it hasn’t even started yet.

In the middle of this past Monday night I emailed our contact nurse at Moffitt who called at 9:30AM and asked if we could get there within an hour for David to go into an observation unit.  (I guess I had made my concern clear in the email.) Oh, my!  We hadn’t packed yet for the afternoon departure for his late afternoon appointment with the medical oncologist to be followed by two days of scans.  In fact, David was still in bed.  We did manage to get there in 2 hours and, after many hours of testing, David was admitted for PNEUMONIA!  No wonder his energy had been declining and his cough increasing!

After 3 nights in the hospital, he finally was released yesterday just in time for us to join the 5PM rush hour traffic between Tampa and Orlando.  As we inched along, David reminded me that the best response is to think about all the poor employees who have to make that trek every day.

Of course, all the appointments set for last week had to be postponed.  This coming Monday and Tuesday’s rescheduled tests will give the Moffitt medical team the opportunity to know just what those PET scan “hot spots” really are.  (Isn’t modern medicine amazing??)  He is still on course for his radiation treatment in April.

Today David got up mid-morning with a look of determination on his face to have a better day…and he has.  For the first time in nearly 3 weeks he is upstairs at his desk working on his computer and his many “piles”.  The IV antibiotics make food taste metallic but he is still able to take in calories and even enjoyed my Mom’s delicious recipe of Spanish Rice.

Most of all, it is very heartwarming to see the smile back in David’s eyes.  In fact, it is good to see his eyes open!  Both of us thank you for your emails, cards of encouragement, and kind words reminding us of your many  prayers.

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Another Appointment…Another Perspective

This morning David had an appointment with Dr. Hoffe, the radiation oncologist here in Florida at the Moffitt Cancer Center in Tampa.  She treated David in 2008 and 2010 for metastases of his intestinal carcinoid to pelvic bones.  She zapped those with targeted radiation; that is the last ever seen of them.  So now we are there again…

We had not seen the actual PET scan until today.  We are very grateful that the medical oncologist called us the evening of the PET and assured us that there was no massive metastases of squamous cell carcinoma (SCC) from David’s neck, the area where he had surgery a year ago.  We could see on the scan that the SCC areas in his right lung are quite close together and are near the mid-line of his chest plus there is a spot on the vertebra closest to it.  There are also a couple spots in his liver.

Both SCC and carcinoid can metastasize to liver and bone so next week David will have his annual glow-in-the-dark test to see if they respond to an IV agent that makes carcinoid cells (but not SCC cells) light up.  This test was supposed to be done at the end of April but they moved it up.

Because of the size and location of the lung and vertebra sites, the radiologist at Moffitt is looking at administering a course of daily radiation for 3 weeks (week-ends off) in April while we are still here in FL.  If the lung lesions are not treated, the worst case scenario is bronchial blockage causing total lung collapse on the right … so something definitely needs to be done.

David’s ENT surgeon in Ann Arbor has asked to take a look at the PET results which I sent to her via FedEx today.  We appreciate the fact that Moffitt and the U of M work together rather than each protecting their own turf.  We can’t say enough good things about the medical care David has received wherever he has gone.

David’s oldest, Phillip, flew to Tampa last night to be with us today.  We hadn’t even thought of asking someone in the family to join us but we found it of great help and, actually, a relief to have him with us for this important appointment.

Thank you for your continuing prayers for peace, patience, and clarity.  One of many affirming incidents today was when Dr. Hoffe asked if we knew Dr. Eisbruch at the U.  He was David’s radiation oncologist!  She thinks the world of him and his expertise in the field of therapeutic radiation.  Thank you, Lord, for another little blessing slipped into our day.

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Least Bad News

You don’t hear from us for months and now here are two blogs nearly back-to-back!

Yesterday David had another first…a PET scan.  Rather uneventful and similar to a CT scan with which he is very familiar.  The radioisotope they had injected into his vein meant that if I were a child or pregnant, I’d have to stay 3-6 feel away from him for 6 hours.  Fortunately, neither is the case and I was able to give him a big hug 2 1/2 hours later when he returned to the waiting room.  The next appointment is the 18th which seems like a long wait …

…but then we got a phone call from David’s medical oncologist in Tampa last night.  He had already looked at the PET scan results and wanted to make these next 7 days less stressful for us.  He told us that the lesion seems to be on its own in David’s right lung rather than being a endpoint of a trail of metastases.  That paints a different picture than the alternative that had been laid out before us.  The phone call left us “cautiously optimistic” that targeted radiation with minimal side effects (compared to surgery or chemo) might be a possibility.  That is what the appointment on the 18th will focus on.

David is understandably feeling quite vulnerable right now.  We are both grateful for you many notes and prayers.

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SCC Rears Its Ugly Head Again

It has been months since I last updated this blog but, for the most part, no news is good news.  However, no news can also mean that there is “one more thing” to check out so the blog would be accurate.

We DID make it down to Florida right before Thanksgiving, visiting dear friends along the way and also spending a half-week at the Billy Graham Training Center near Asheville, NC which inspired us and made us want to return again in the future.

In December while those of you up north were already shoveling snow, never expecting it would become a daily exercise lasting for months, we were out on our bicycles enjoying the wooded trails in Celebration.

2014_01_06 David on his Trike

David had thawed out and his hands were warm once again.  It was good to see him have enough energy to do his daily 6-mile ride whether I went with him or not.  Actually, I think he mostly wanted to make use of his new iPhone app, “Map My Ride”!

Just as I was visualizing how to update the blog, David started with a cough in early January but it never materialized into a cold. At first his cough was just at night while lying down but by late in January it was starting to show up during the daytime when he was upright.  He also seemed to have less energy than in December.

After doing some reading online, on Feb. 7 I contacted the nurse for David’s carcinoid specialist, Dr. Strosberg, at Moffitt Cancer Center in Tampa and requested a CT which was done on the 17th.  Dr. S called the next day to tell us there was a spot on his lung and he ordered a Feb. 27 bronchoscopy with biopsy.

Then it was time for me to take off for Fargo, ND with no snow boots and no parka because, once we were already in Florida, Mom was able to schedule her aortic valve replacement for Feb. 25.  So I flew on a very easy Orlando/Sanford 3+ hour, non-stop flight to Fargo.  If you were watching the national weather coverage, you would have seen that is when the most recent “polar vortex” settled into our nation’s midsection once again.  On a good day, it reached 0° F.  After a while, the thermometer reading was irrelevant…the wind speed made all the difference between “not-so-bad” and “takes-your-breath-away” cold.  Meanwhile, David was riding bike and sitting on the porch in the sun in Celebration with our friends, the Brights, who stayed with him to keep him company…and to get out of the north winter land themselves.

Mom’s surgery went fine although she did take a midnight trip via ambulance to the ER two days after being sent home because she had developed fluid on her lungs making it hard for her to breathe and she had an erratic heartbeat.  She has since been discharged and is doing well.

On the 28th, the day after David had the biopsy of his lung via bronchoscopy, Dr. S called to let him know that the biopsy showed squamous cell carcinoma.  (We love that quick attention by the doctor but certainly didn’t welcome the news!)  An appointment with a medical oncologist at Moffitt was set for Friday, March 7, the day I was to return to Celebration from Fargo late in the evening.  I was able to change my flight to the 5th, the day my sister from Montana, Muriel, was scheduled to fly in to Fargo to take over for 2 more weeks.  We had envisioned a 2-day overlap … but I needed to be with my dear hubby.  So I left Mom in the hospital, got settled in my plane which was about to back out from the gate when we had to wait because Muriel’s plane was pulling up to the gate right beside us.  Had I been on the other side of my plane, I could have seen her wave to me!

So David had his appointment at Moffitt with Dr. Jeffery Russell, Head/Neck & Endocrine Oncologist at Moffitt and I was able to be with him.  We were very impressed with the doctor.  He spent the next hour showing us David’s lung CT images, explaining what they meant, what they could mean, and what could be done.  Right now all options are on the table (radiation, surgery, chemo) and he approached the probable cost/benefit ratio of each.

It is necessary to more clearly define whether this is a metastasis with multiple nodules or if this is an isolated primary site which can happen without it having to have spread from his neck.  This coming Monday, Mar. 10, David will have a full body PET scan to determine the extent of the SCC sites.  As his next step, on March 18 he has an appointment with the Radiation Oncologist to see if targeted radiation therapy of the spot on his lung would be advisable.

We were very impressed with Dr. Russell who had made a point of becoming familiar with David’s complex medical history before he came into the room to see him.  He knows the medical oncologist who treated David at the U of M and thinks very highly of him and he holds the Head and Neck Department (ENT) at the UMich in high regard.  He also said that Moffitt often “shares” patients with the U of Mich. and the U of Minn., so treatment in winter in FL and summer in MI should not be a problem.

We left that appointment feeling quite peaceful with the ray of hope offered by Dr. Russell.  There is a lot to be said for having confidence in a doctor who has an approach we appreciate.

So now we are in waiting mode again.  Tomorrow is the full body PET scan.  Then next are the results and possible courses of action to be discussed on the 18th.  Waiting is difficult so we ask for your prayers that we can have patience to not walk into the future before we have to and can make the best use of each God-given day.  Even more, His Peace is what will carry us along the way.

In counting our blessings, we can list many:

  • Comfort that God carried us through the last health crisis and assurance he will be with us through this one, as well.
  • Knowledgeable, compassionate doctors
  • Doctors’ willingness to work with MI
  • Warm weather
  • Moffitt being only 1+ hour away rather than 2 ½ to U of Mich from Holland
  • Circles of supportive friends here, there, and all over

Thank you, dear friends.

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On Our Way

I am extremely glad to say that we will be on our way to warmer weather by the end of this week.  All of David’s medical doctors have given him the go-ahead.  We could certainly sympathize with the gentleman at the Urology office today who was bemoaning the fact that he should be in FL by now but medically has to stay longer.  To quote Yogi Berra, it was “Deja vous all over again” because that is how last mid-November started for us!

David’s energy is returning and so is his appetite.  Right now he is busy going through his long-neglected desk papers to determine what needs to go with us, what needs to stay, and what needs to be tossed.  That waste basket is becoming very full!

On Nov. 9 in our devotional, Jesus Calling by Sarah Young, this section leaped out at me: “You tend to project yourself mentally into the next day, week, month, year, decade; and you visualize yourself coping badly in those times.  What you are seeing is a false image, because is doesn’t include Me.  Those gloomy times that you imagine will not come to pass, since My Presence will be with you at ALL times.”  Had I known that in 2013 my husband would have metastatic cancer requiring surgery, radiation, and chemo, I would have felt very fearful.  Had I known that during that same time,  I would be losing my dad, I would have been devastated.

Because of your expressions of care and support and your prayers over this past year, our load was not as difficult to bear.  Our experiences over these last several months have given us much more empathy for others facing challenges.  We see each day as a blessing from the Lord.

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Digitizing His Life

I am happy to be able to say that David has enjoyed a noticeable improvement in his energy and wakefulness.  Healing has been going well and there is no return of the MRSA, but it has taken David a long time to get to the point where he hasn’t needed a couple naps a day.  In fact, for this last week he has had zero naps.  I find him usually at his computer digitizing slides from the 60s and 70s…and he is making good progress.  Besides, it is fun for him to walk down memory lane.  Many of those slides are pre-Jayne from the days when his 3 oldest children were little tykes.

We do PLAN to leave in mid-November for winter in Florida again.  I am not going to start loading the car, though, until the last of his 4 November appointments is over.  Meanwhile, we are planning an early November gathering with all of our kids here since we don’t return to MI for the holidays.  We always look forward to their visits to us in the winter where we can thoroughly enjoy one family at a time.

If you don’t see a blog entry for a long time, that means that all is going well.  Not to worry.  We are very grateful for present good health, both of us, now that these bumps are pretty much behind us.  We certainly are fearfully and wonderfully made!    Psalm 139:14

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