My apologies to all those who have written requesting an update. We haven't had any internet service since last Wednesday. Hopefully, the cable company has made the appropriate repairs so we can stay connected.
Today is the third week anniversary of Ernie's last treatment. We've decided that radiation is the gift that keeps on giving.
After Ernie's neck turned from sunburned to a deep beet red and the blisters multiplied, I emailed the oncologist for advice. It is so refreshing to have the doctors share their email addresses and sometime even their personal cell phone numbers. The oncologist told us how to protect the blisters from infection but cautioned it could be another week or two before we saw any improvement in Ernie's overall condition. That was last Wednesday and, so far, no improvement to speak of.
We've returned to liquid meds as pills are too painful to swallow and/or get stuck in Ernie's throat. Today, I am picking up a patch that will continuously dispense pain meds through his skin. This is the only option to the continuous release pain pills.
Our follow up appointment at Johns Hopkins is December 20 and they promised he would "be a new man" by then. So far, they have been right about everything so we have hanging on to this thought.
Tuesday, November 29, 2011
Tuesday, November 22, 2011
Pain Management
It is hard to believe that two weeks ago today Ernie rang the bell signifying the end of his radiation treatments. Since then the skin on his neck has turned from Hawaiian tan, to sunburn and now to a blistered mess. His throat has also gotten increasingly sore. No wonder, if the outside is worse I guess it stands to reason that the inside is worse as well.
Since narcotic painkiller prescriptions must be written in-state, today we visited Ernie's primary care doctor to get refills. Between the doctor's office, the pharmacy and a stop at the supermarket to get more pudding, we were only gone for a few hours. Still, Ernie was exhausted by the effort.
Looking back at the discharge notes from the doctor, he cautioned that we may not see any improvement for at least two weeks. Unfortunately, it looks like he was right. Ernie is such an over achiever, I guess we set our sights too high in terms of conquering the pain. Despite the pain, however, Ernie has been doing a stellar job of maintaining his weight and consuming his three puddings per day. And, we still wake up every morning optimistic about his recovery.
Since narcotic painkiller prescriptions must be written in-state, today we visited Ernie's primary care doctor to get refills. Between the doctor's office, the pharmacy and a stop at the supermarket to get more pudding, we were only gone for a few hours. Still, Ernie was exhausted by the effort.
Looking back at the discharge notes from the doctor, he cautioned that we may not see any improvement for at least two weeks. Unfortunately, it looks like he was right. Ernie is such an over achiever, I guess we set our sights too high in terms of conquering the pain. Despite the pain, however, Ernie has been doing a stellar job of maintaining his weight and consuming his three puddings per day. And, we still wake up every morning optimistic about his recovery.
Saturday, November 19, 2011
Home Sweet Home
Home at last.
We left Baltimore at 10:30 AM and arrived in Winston-Salem at 5:30 PM. We went the scenic route through Harper's Ferry and the Appalachian Mountains--a little longer than the DC route but much less traffic. It was a beautiful day and thanks to the power of Feliway (feline facial pheromones--thank you Sue Stevens) there was nary a peep from the cats in the back seat. This is truly a miracle as they hate the car and usually remind us of this constantly whenever we take them with us.
On this trip, both cats AND Ernie dozed most of the trip. Ernie's symptoms continue to develop--his neck turned from tan to red (one week after the end of radiation) to blistered (yesterday). His throat has become progressively sorer as well. Given the looks of his neck, one can just imagine what is going on inside his throat.
It seems like we have been gone forever--I guess 4 1/2 months is a long time. Since we just finished remodeling before we left, it was hard to remember what the house even looked like.
It turned out to be a very emotional home coming. When we walked in the door, we were greeted by this,signed by many of our great friends....
I must admit, I cried. It has been such a long journey but, as the old saying goes, "many hands make light work." Our friends lifted our spirits when things seemed bleak. It is great to be back among y'all. We look forward to reconnecting in the next few weeks as Ernie regains his strength and his voice.
We left Baltimore at 10:30 AM and arrived in Winston-Salem at 5:30 PM. We went the scenic route through Harper's Ferry and the Appalachian Mountains--a little longer than the DC route but much less traffic. It was a beautiful day and thanks to the power of Feliway (feline facial pheromones--thank you Sue Stevens) there was nary a peep from the cats in the back seat. This is truly a miracle as they hate the car and usually remind us of this constantly whenever we take them with us.
On this trip, both cats AND Ernie dozed most of the trip. Ernie's symptoms continue to develop--his neck turned from tan to red (one week after the end of radiation) to blistered (yesterday). His throat has become progressively sorer as well. Given the looks of his neck, one can just imagine what is going on inside his throat.
It seems like we have been gone forever--I guess 4 1/2 months is a long time. Since we just finished remodeling before we left, it was hard to remember what the house even looked like.
It turned out to be a very emotional home coming. When we walked in the door, we were greeted by this,signed by many of our great friends....
I must admit, I cried. It has been such a long journey but, as the old saying goes, "many hands make light work." Our friends lifted our spirits when things seemed bleak. It is great to be back among y'all. We look forward to reconnecting in the next few weeks as Ernie regains his strength and his voice.
Wednesday, November 16, 2011
Homeward Bound
After getting some rest, Ernie decided that we should head home to Winston-Salem on Saturday. The big question now is will the remaining "stuff" fit in our car?
I am of the opinion that it will fit while Ernie is more skeptical. Tomorrow we will ask the concierge about storing a few things in the event that Ernie is right. Our next trip to Baltimore is December 20 so it would only be for a month or so. This will give us some flexibility if, at the last minute we have a fit problem. In the meantime, Ernie's job is to rest and feel better.
I am of the opinion that it will fit while Ernie is more skeptical. Tomorrow we will ask the concierge about storing a few things in the event that Ernie is right. Our next trip to Baltimore is December 20 so it would only be for a month or so. This will give us some flexibility if, at the last minute we have a fit problem. In the meantime, Ernie's job is to rest and feel better.
Tuesday, November 15, 2011
Check Ups
Both Ernie and I had check-ups today. When Ernie was first diagnosed with cancer, we volunteered to take part in a study called HOTSPOT (HPV Oral Transmission Study in Partners Over Time). We both provided DNA and filled out questionnaires. Today I got a free head and neck exam to check for base of throat cancer. This time I was on the receiving end of the endoscope. My exam was clear and the doctor advised me on what to watch for. Right now, there is no good data on how many partners of those with HPV cancer will develop cancer themselves. The purpose of the study is to determine this. Note to all of you parents of teens or younger, please consider having both your boys and girls vaccinated for HPV. You would not want your worst enemy to go through this treatment or treatment for cervical cancer.
After my appointment, Ernie saw his medical oncologist. This last week was very rough on him. His pain level was much higher than during his treatments, his mouth sores seemed to get worse, his voice got more hoarse (he can't speak above a whisper) and his skin actually got redder and more sunburned looking even though he was not exposed to any more radiation. We were not able to get the suggested amount of food down him without making him sick and most days he did not feel well enough to go out. The doctor confirmed that all of these things are normal. In fact, she said his symptoms may get worse for another week. However, she promised that in three weeks, he will be a new man. We can hardly wait!
The doctor is fine with us returning to Winston-Salem but told Ernie to avoid crowds and sick people for another couple of weeks until his white cell count improves. We promised to tell the rental agent tomorrow if we are going to extend beyond Saturday. Ernie was too tired from our long day to make any decisions tonight.
After my appointment, Ernie saw his medical oncologist. This last week was very rough on him. His pain level was much higher than during his treatments, his mouth sores seemed to get worse, his voice got more hoarse (he can't speak above a whisper) and his skin actually got redder and more sunburned looking even though he was not exposed to any more radiation. We were not able to get the suggested amount of food down him without making him sick and most days he did not feel well enough to go out. The doctor confirmed that all of these things are normal. In fact, she said his symptoms may get worse for another week. However, she promised that in three weeks, he will be a new man. We can hardly wait!
The doctor is fine with us returning to Winston-Salem but told Ernie to avoid crowds and sick people for another couple of weeks until his white cell count improves. We promised to tell the rental agent tomorrow if we are going to extend beyond Saturday. Ernie was too tired from our long day to make any decisions tonight.
Thursday, November 10, 2011
Let the Healing Begin
Now that we have had a day of rest, we wanted to pause and again thank everyone in our incredible support system. Your emails, texts, calls and gifts of congratulations have lifted our spirits more than you will ever know.
Although the bell tolled, it dawned on us that the battle is just half over. Now we have to nurse Ernie back to health. As predicted, he had his worst days to-date yesterday and today. His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t. Even though the treatments stopped, the effects do not stop immediately.
By popular demand, I will continue to post weekly (or so) updates on his progress. For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:
1. Maintain Ernie's weight at 155 pounds. The feeding tube can not come out if he loses weight.
2. Eat at least 300 calories of solid food by mouth per day. This is the equivalent of 3-3.25 ounce snack cups of pudding. This is critical to maintaining his ability to swallow over the long-term.
3. Exercise daily to build up his strength. This means walking 2 miles or strength training with rubber bands. In addition, he must keep up his swallowing exercises.
4. Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.
When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly. We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him.
Although the bell tolled, it dawned on us that the battle is just half over. Now we have to nurse Ernie back to health. As predicted, he had his worst days to-date yesterday and today. His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t. Even though the treatments stopped, the effects do not stop immediately.
By popular demand, I will continue to post weekly (or so) updates on his progress. For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:
1. Maintain Ernie's weight at 155 pounds. The feeding tube can not come out if he loses weight.
2. Eat at least 300 calories of solid food by mouth per day. This is the equivalent of 3-3.25 ounce snack cups of pudding. This is critical to maintaining his ability to swallow over the long-term.
3. Exercise daily to build up his strength. This means walking 2 miles or strength training with rubber bands. In addition, he must keep up his swallowing exercises.
4. Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.
When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly. We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him.
Tuesday, November 8, 2011
Ernie Rings The Bell!
The day we have been waiting for finally arrived. Ernie marked the occasion of his final radiation treatment by ringing the bell outside of the treatment room (video clip below) as the nurses and other patients looked on. It is a great tradition, providing closure for Ernie and encouragement for those still undergoing treatment.
They also presented him with his radiation mask--a kind of trophy for his bravery.
After ringing the bell, we met with the Radiation Oncologist who gave us a schedule for tapering off all the medications and a briefing on when to expect the side effects of treatment to subside. Long story short, it can be 6 months to a year for complete recovery of saliva and taste buds but major improvement can happen before then. Ernie will see him again for a follow up in 6 weeks.
Finally, Ernie had his last chemotherapy. We thought he wouldn't have to be stuck again for a while, but the Oncology Nurse wants to check his blood again next week and give him more magnesium if needed.
We returned to the apartment to celebrate. We could not be more happy.
They also presented him with his radiation mask--a kind of trophy for his bravery.
After ringing the bell, we met with the Radiation Oncologist who gave us a schedule for tapering off all the medications and a briefing on when to expect the side effects of treatment to subside. Long story short, it can be 6 months to a year for complete recovery of saliva and taste buds but major improvement can happen before then. Ernie will see him again for a follow up in 6 weeks.
Finally, Ernie had his last chemotherapy. We thought he wouldn't have to be stuck again for a while, but the Oncology Nurse wants to check his blood again next week and give him more magnesium if needed.
We returned to the apartment to celebrate. We could not be more happy.
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