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Mom and Dad with Dad's Corvette |
The title of our blog is meant to reflect our optimism about the outcome of treatment, our trepidation about the process and our determination to maintain our sense of humor throughout it all.
Friday, September 30, 2011
Hospitals R Us
We had an uneventful flight to Minneapolis and immediately launched into helping the folks tackle their move. After 20 years in their townhouse, they've decided to move to an active seniors complex. We were deep into the closets, etc when the cardiologist decided that Dad should be admitted into the hospital. Of course, it was Ernie who took him to his appointment. Per his doctor's orders, Ernie was wearing his hospital mask when he and dad arrived at the admitting desk--confusing the daylights out of the hospital staff who couldn't figure out who to admit! After some extra-strength diuretics to rid him of fluids, Dad was released today and we returned home to Baltimore.
Sunday, September 25, 2011
Break
We had a delightful weekend with Doug and Ruth Shouse from Winston-Salem. (Neglected to get their picture--note to self to follow up with them.) The weather was great and we were able to eat outside at our favorite harbor-side restaurant.
Tomorrow we leave for Minnesota, returning on Friday in time to host the Suttons and Saunders from Winston-Salem. They leave on October 2 and on October 3, it is back to the work of curing cancer. The doctors told Ernie to make the most of his break so we are keeping our calendar jam-packed. It is a welcome respite from the last 9 weeks that will prepare us for the final 6 week push to the finish line.
Tomorrow we leave for Minnesota, returning on Friday in time to host the Suttons and Saunders from Winston-Salem. They leave on October 2 and on October 3, it is back to the work of curing cancer. The doctors told Ernie to make the most of his break so we are keeping our calendar jam-packed. It is a welcome respite from the last 9 weeks that will prepare us for the final 6 week push to the finish line.
Thursday, September 22, 2011
Doctor's Orders
Ernie decided to follow the standard protocol and get the feeding tube. The doctors kindly agreed to wait until after we return from our trip to Minnesota next week to do the surgery.
Even though the staff wants you to have the tube, they actually discourage you from using it. If you keep swallowing during radiation, you are less likely to lose any long-term swallowing function. The tube is there to supplement your nutrition if you start to lose too much weight. Maintaining normal weight is necessary not only to remain healthy, but also to insure that the size of your neck doesn't change dramatically after they make the mask and line up the radiation beams.
If you don't use the tube, they remove it a week or two after radiation. If you do use it--and we gather most people do to some extent--then they wait a week or two after the last use to remove it. Seems like the procedures will never end but, given our success rate so far, we are not complaining.
Even though the staff wants you to have the tube, they actually discourage you from using it. If you keep swallowing during radiation, you are less likely to lose any long-term swallowing function. The tube is there to supplement your nutrition if you start to lose too much weight. Maintaining normal weight is necessary not only to remain healthy, but also to insure that the size of your neck doesn't change dramatically after they make the mask and line up the radiation beams.
If you don't use the tube, they remove it a week or two after radiation. If you do use it--and we gather most people do to some extent--then they wait a week or two after the last use to remove it. Seems like the procedures will never end but, given our success rate so far, we are not complaining.
Tuesday, September 20, 2011
You Can't Always Get What You Want...
...but in our case, we did! We were resolved to accept whatever happened but the doctors agree that 5 1/2 half weeks of radiation will be sufficient to cure the cancer in Ernie's throat as well as in his lymph nodes!!!! We didn't realize until today that they could select different durations for different tumors.
At least 95% and perhaps all of the tumor in his throat is gone. There is something small remaining on the left side but it could be scar tissue and not tumor. The doctors claim Ernie had a remarkable response to the treatment as his tumor was very large when he was diagnosed--it extended from his throat to his tonsils to his upper palate, which was very red. To have it "melt away" like and leave his throat looking so normal is what they hope for.
Even if they could determine that all of the tumor was gone, he would still need to undergo radiation to insure that it does not return--a concern for this type of cancer. So on October 3, Ernie will begin his new regime of radiation 5 days per week combined with chemotherapy (one drug only) 1 day per week. He also sees his radiologist for a consult one day per week. So three days a week we will be at the hospital for one hour and the other two days, two to three hours. We get to choose from the available time slots when Ernie goes for his first treatment.
Our last decision concerns whether or not to have a feeding tube inserted. This is standard protocol here but they are giving Ernie the chance to opt out based on his schleroderma. Schleroderma can cause the body to create excessive scar tissue in response to injury. We have to let them know by Thursday. Stay tuned.
At least 95% and perhaps all of the tumor in his throat is gone. There is something small remaining on the left side but it could be scar tissue and not tumor. The doctors claim Ernie had a remarkable response to the treatment as his tumor was very large when he was diagnosed--it extended from his throat to his tonsils to his upper palate, which was very red. To have it "melt away" like and leave his throat looking so normal is what they hope for.
Even if they could determine that all of the tumor was gone, he would still need to undergo radiation to insure that it does not return--a concern for this type of cancer. So on October 3, Ernie will begin his new regime of radiation 5 days per week combined with chemotherapy (one drug only) 1 day per week. He also sees his radiologist for a consult one day per week. So three days a week we will be at the hospital for one hour and the other two days, two to three hours. We get to choose from the available time slots when Ernie goes for his first treatment.
Our last decision concerns whether or not to have a feeding tube inserted. This is standard protocol here but they are giving Ernie the chance to opt out based on his schleroderma. Schleroderma can cause the body to create excessive scar tissue in response to injury. We have to let them know by Thursday. Stay tuned.
Monday, September 19, 2011
Pins and Needles
Pins and needles aptly describes our day today. We were at the hospital at 6:30 AM sharp for a "post chemo" MRI. The film from today will be compared with the "pre-chemo" film to see how the tumors have responded to the drugs. As part of the protocol, they must inject dye into your veins. Lucky Ernie.
Next came the "scope"--a long needle-like probe they stick down your nose to look at the tumor on TV. But wait, there's more.
The radiologist capped off the morning with a CT scan. This time they inserted an IV to deliver the contrast. This procedure was to insure that the radiation mask that was made pre-chemo is still accurate. We can't figure out why they just don't wait and make the mask when they need it. Maybe they are trying to toughen him up for things to come.
We are now on pins and needles waiting for the results of the MRI and the scope. The radiologist, surgeon and oncologist will review the film and then decide if Ernie is a candidate for the shorter course of lower dose radiation or if they think he should proceed with the standard of care. We have an appointment with the oncologist tomorrow morning and are hoping that they will give us their decision then. The surgeon liked the looks of the MRI but wasn't as happy when he looked through the scope so we are not sure what to expect. In the meantime, keep those thoughts and prayers coming.
Next came the "scope"--a long needle-like probe they stick down your nose to look at the tumor on TV. But wait, there's more.
The radiologist capped off the morning with a CT scan. This time they inserted an IV to deliver the contrast. This procedure was to insure that the radiation mask that was made pre-chemo is still accurate. We can't figure out why they just don't wait and make the mask when they need it. Maybe they are trying to toughen him up for things to come.
We are now on pins and needles waiting for the results of the MRI and the scope. The radiologist, surgeon and oncologist will review the film and then decide if Ernie is a candidate for the shorter course of lower dose radiation or if they think he should proceed with the standard of care. We have an appointment with the oncologist tomorrow morning and are hoping that they will give us their decision then. The surgeon liked the looks of the MRI but wasn't as happy when he looked through the scope so we are not sure what to expect. In the meantime, keep those thoughts and prayers coming.
Friday, September 16, 2011
Attack of the Rotten Cold Virus
Our "end of chemo" celebration ended with a trip to the ER in the wee hours of Wednesday morning. What started as a sore throat at bedtime Tuesday morphed into a swollen throat by 1 AM Wednesday. This innocuous sounding symptom can be a sign of a severe allergic reaction that can totally constrict the airways, according to our handy symptom chart. Deciding to err on the side of caution, we called the emergency hotline number and were instructed to proceed to the ER where Ernie was given more Benadryl and kept until morning for observation.
The good news is that it was not an allergic reaction. The bad news--not enough white blood cells to fight off the common cold. As long as his temperature remains under 100.5, he can stay at home to recover. This is some small consolation. Since his immune system is shot, his days and nights are one long slumber.
Next Monday and Tuesday, he is scheduled for a follow-up MRI, a final calibration of his radiation mask and a "scoping" by the surgeon to see how much tumor remains in his throat. Of course, we do not want to miss these appointments. I just returned from the Whole Foods with ingredients for some chicken-based soup. Hope those old wives tales about its curative powers are true.
The good news is that it was not an allergic reaction. The bad news--not enough white blood cells to fight off the common cold. As long as his temperature remains under 100.5, he can stay at home to recover. This is some small consolation. Since his immune system is shot, his days and nights are one long slumber.
Next Monday and Tuesday, he is scheduled for a follow-up MRI, a final calibration of his radiation mask and a "scoping" by the surgeon to see how much tumor remains in his throat. Of course, we do not want to miss these appointments. I just returned from the Whole Foods with ingredients for some chicken-based soup. Hope those old wives tales about its curative powers are true.
Tuesday, September 13, 2011
Made the Cut!
It was a close call today. Ernie's neutrophil's (a type of white blood cell that is closely watched by the Oncologist) were 1520 today vs the cutoff of 1500. The nurse said they must have been looking for extra cells under the microscope. Anyway, his counts were good enough to get his last chemo!!!!! There are not enough exclamation points to express our joy at finishing "round 1". Jim and Charley are coming tonight for their monthly visit. We are going to celebrate by taking in an Orioles game tomorrow night among other things.
Ernie is definitely looking forward to his time off. When he first heard about the enforced break, he was disappointed that the treatment was getting stretched out. Now he is grateful for this time so he can regain some energy and restore his taste buds before the push to the finish line begins October 3.
Ernie is definitely looking forward to his time off. When he first heard about the enforced break, he was disappointed that the treatment was getting stretched out. Now he is grateful for this time so he can regain some energy and restore his taste buds before the push to the finish line begins October 3.
Saturday, September 10, 2011
Defenders Day Weekend
We have had our usual ups and downs since chemo on Tuesday. However, nothing can dampen our enthusiasm for next week's milestone.
We continue to distract ourselves by immersing ourselves in all that Baltimore has to offer. Yesterday marked the start of Defender's Day weekend in Baltimore. Defender's Day is officially September 12--the date in 1814 when Baltimore successfully turned back a British attack on Fort McHenry and inspired Francis Scott Key to write the Star Spangled Banner. We are watching, from our balcony, for the fireworks that will simulate the "bombs bursting in air" just as Baltimoreans 197 years ago watched to see which side would triumph "in the dawns early light."
It seems fitting with Washington and NYC on high alert for terrorist attacks, that we should stand proud and celebrate our ability to defend our liberty over those who would try to defeat us.
We continue to distract ourselves by immersing ourselves in all that Baltimore has to offer. Yesterday marked the start of Defender's Day weekend in Baltimore. Defender's Day is officially September 12--the date in 1814 when Baltimore successfully turned back a British attack on Fort McHenry and inspired Francis Scott Key to write the Star Spangled Banner. We are watching, from our balcony, for the fireworks that will simulate the "bombs bursting in air" just as Baltimoreans 197 years ago watched to see which side would triumph "in the dawns early light."
It seems fitting with Washington and NYC on high alert for terrorist attacks, that we should stand proud and celebrate our ability to defend our liberty over those who would try to defeat us.
Star Spangled Banner over Fort McHenry |
Tuesday, September 6, 2011
8 down and 1 to go!
We marked our 2 month anniversary as Baltimore residents with Ernie completing treatment 8 out of 9 of his chemotherapy. His white cell counts continue to look good so there is little doubt among the staff that he will complete #9 next week. They cut back on the Benadryl and fluids today, and Ernie says he is feeling better than he's felt in a week. On the way home, we were singing and dancing in the rain.
Monday, September 5, 2011
Grand (Prix) Weekend
Our great friends, Bill Whitlatch and Mary Gilbert, came to visit this weekend from Charlotte. It also happened to be the first, and maybe annual, running of the Baltimore Grand Prix. The 2.4 mile race route was along the Inner Harbor front--smack dab in the middle of downtown--and around Camden Yards. Road repairs and closures started a year ago and bleachers and barriers have been going up for the last month. It was highly controversial, with the Mayor staking her re-election on a successful event. From the crowds and noise the four of us experienced--and the fact that the ESPN announcers waxed poetic about the race and Baltimore--I would guess that there will be no real mayoral contest.
We made an effort to stay away from the crowds, focusing on the Star Spangled Banner Museum, Fort McHenry and the Aquarium. We also sampled as many of Baltimore's restaurants as we could.
Bill and Mary left this morning, giving Ernie time to rest up for his next chemo tomorrow. Usually by Monday he is ready to get started again, but both of us agree that tomorrow seems soon to have to go back. We wonder if he is experiencing some kind of cumulative effect or if nine weeks is just a long time to have to endure this assault.
Bill and Mary visit our apartment |
We made an effort to stay away from the crowds, focusing on the Star Spangled Banner Museum, Fort McHenry and the Aquarium. We also sampled as many of Baltimore's restaurants as we could.
Bill and Mary left this morning, giving Ernie time to rest up for his next chemo tomorrow. Usually by Monday he is ready to get started again, but both of us agree that tomorrow seems soon to have to go back. We wonder if he is experiencing some kind of cumulative effect or if nine weeks is just a long time to have to endure this assault.
Friday, September 2, 2011
Inside Information
Ernie is still fighting the effects of the last chemo. This means lots of rest and nothing that requires a lot of concentration. However, his spirits are excellent as he knows he is in the home stretch as far as chemo is concerned. Our thoughts our now turning to the radiation.
The week of September 19--that is the week after he finishes his last chemo--he will have all of his follow up appointments to gauge the size and locations of the tumors post treatment. The docs will then decide whether he is subjected to 5.5 weeks of lower dose radiation or 7 weeks of "normal" radiation. Then, we get a week off, which we will use to go to Minnesota. When we return, it will be time to start the five days per week of radiation.
Our wonderful oncology nurse introduced Ernie to another man--Peter Kaufman--who just completed the same clinical trial that Ernie is in. Peter, who happens to be an MD and, in the small world department, used to live in Winston Salem, was jubilant about his results. He and Ernie exchanged emails and Peter has been giving Ernie insight into what to expect during radiation as well as dos and don'ts. He has not sugar-coated the experience (told Ernie he would feel like crap after the first week or two) but still, it is very reassuring to talk to someone who has actually "been there and done that." We can now start to see the light at the end of the tunnel.
The week of September 19--that is the week after he finishes his last chemo--he will have all of his follow up appointments to gauge the size and locations of the tumors post treatment. The docs will then decide whether he is subjected to 5.5 weeks of lower dose radiation or 7 weeks of "normal" radiation. Then, we get a week off, which we will use to go to Minnesota. When we return, it will be time to start the five days per week of radiation.
Our wonderful oncology nurse introduced Ernie to another man--Peter Kaufman--who just completed the same clinical trial that Ernie is in. Peter, who happens to be an MD and, in the small world department, used to live in Winston Salem, was jubilant about his results. He and Ernie exchanged emails and Peter has been giving Ernie insight into what to expect during radiation as well as dos and don'ts. He has not sugar-coated the experience (told Ernie he would feel like crap after the first week or two) but still, it is very reassuring to talk to someone who has actually "been there and done that." We can now start to see the light at the end of the tunnel.
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