Just about a year ago I wrote what I hoped would be the final post on the "Ernie Takes The Cure" blog, closing the door on the subject of cancer and moving on with life. Unfortunately, it appears that the cancer had other ideas.
To bring you all up to speed, the wonderful doctors at Johns Hopkins have been monitoring Ernie with quarterly PET scans. Before these scans, he drinks a sugary solution. The greedy cancer cells absorb the sugar faster than normal cells. This makes the cancer cells "light up" on the scan so they can be identified. Other abnormal but noncancerous cells do the same thing. Most patients show some abnormal activity during the first few months. After about 12 weeks, though, the docs start to become concerned if this activity remains.
Ernie's scans improved at first, but since this summer there has been one small but concerning "mass" in the left side of his neck, where the cancer had metastisized. The docs watched it throughout the remainder of 2012, not wanting to surgically remove it because of his scleroderma. This week, however, the scan showed that the mass had increased in size and was "lighting up" more than in previous scans. Therefore, our doctors and the "tumor board" recommended surgery to remove it. They normally make this recommendation if they think there is a 20% or greater risk of the mass being cancerous.
The surgery--a selective neck dissection--is scheduled for March 14. The surgery itself will take about 4 hours and be followed by a 5 day or so hospital stay. The surgeon said we should plan to stay in Baltimore for about 10 days so he can take the drains and stitches out before we depart. We will try to return to our old digs in Baltimore during this time. Total recovery time is normally 6 to 8 weeks and includes PT to rehab shoulder muscles that will be damaged during surgery. Note to his golfing buddies: probably no golf during this time but he will be back just in time for the warm weather in May.
As before, I will post news of Ernie's progress as it becomes available. Thanks to you all for your constant support and interest in my dear husband. It has kept us going during this unexpectedly long recovery period.
Friday, February 22, 2013
Wednesday, February 1, 2012
Trifecta!
Three appointments and three successes!
Monday the preliminary PET report showed no cancerous mass. This was confirmed by the final report, which we received from our medical oncologist on Tuesday.
Although there was a "faint uptake" of the nuclear markers in the lymph nodes on the left side of the neck that could indicate cancer cells, Ernie's team is recommending that they observe him for another three months and then repeat the scan. They feel confident in taking this approach because the size of the nodes is smaller than typical for cancer tumors. Also, it is not unusual to have some residual swelling that can be confused with cancer cells in early scans. This decision will be reviewed by a 10-doctor "tumor board" on Monday.
If, in three months these lymph nodes do turn out to be cancerous, they can be surgically removed. Given their location, the doctors believe the surgery will be relatively easy and not cause any long term problems. Had there been residual cancer in Ernie's neck or throat, this would have been a different story altogether.
Finally, today we visited the infectious disease doctor. After examining Ernie, she concurred with the surgeon and radiation oncologist that the coating on Ernie's tongue is most likely "radiation debris" and not a fungus. Therefore, she took him off of the antibiotics that were causing daily bouts of nausea.
It will probably take another 3 to 6 months for Ernie to completely rid himself of all of the side effects of treatment (ie-weight loss, hoarse voice, lack of taste buds) but we feel that we are finally closing the book on this part of our life. Accordingly, this will be the final blog.
Thank you again for taking this journey with us. I can not stress how important you were to us reaching this point. The silver lining in this storm cloud is clear: we emerge with deeper relationships that we will continue to enjoy for many years to come.
Monday the preliminary PET report showed no cancerous mass. This was confirmed by the final report, which we received from our medical oncologist on Tuesday.
Although there was a "faint uptake" of the nuclear markers in the lymph nodes on the left side of the neck that could indicate cancer cells, Ernie's team is recommending that they observe him for another three months and then repeat the scan. They feel confident in taking this approach because the size of the nodes is smaller than typical for cancer tumors. Also, it is not unusual to have some residual swelling that can be confused with cancer cells in early scans. This decision will be reviewed by a 10-doctor "tumor board" on Monday.
If, in three months these lymph nodes do turn out to be cancerous, they can be surgically removed. Given their location, the doctors believe the surgery will be relatively easy and not cause any long term problems. Had there been residual cancer in Ernie's neck or throat, this would have been a different story altogether.
Finally, today we visited the infectious disease doctor. After examining Ernie, she concurred with the surgeon and radiation oncologist that the coating on Ernie's tongue is most likely "radiation debris" and not a fungus. Therefore, she took him off of the antibiotics that were causing daily bouts of nausea.
It will probably take another 3 to 6 months for Ernie to completely rid himself of all of the side effects of treatment (ie-weight loss, hoarse voice, lack of taste buds) but we feel that we are finally closing the book on this part of our life. Accordingly, this will be the final blog.
Thank you again for taking this journey with us. I can not stress how important you were to us reaching this point. The silver lining in this storm cloud is clear: we emerge with deeper relationships that we will continue to enjoy for many years to come.
Monday, January 30, 2012
Ernie's Luck Continues
The day started on sour note when John's Hopkins called to say that the insurance company would only pay for the PET scan and not the CT. As disappointed as we were, Ernie went ahead with the PET scan. By the end of the day we had the results: "no cancerous mass"! The lymph nodes still show some activity but the surgeon was unconcerned at this point. He will be our "go to" guy for the next five years-the typical time that cancer patients are monitored. We will see him every 2 months at first. If Ernie continues to be symptom free, the time between visits will be extended.
The swallowing specialist was also impressed with Ernie's progress. His vocal cords look fine but she observed that he is relying on his "false vocal cords" when his voice tires. This is probably a habit he developed when his vocal cords were too swollen to use. She and the surgeon agreed that Ernie would benefit from some vocal therapy and recommended someone at Wake Forest Baptist Medical Center.
The surgeon also had some reservations about the oral infection diagnosis. In his opinion, the coating on Ernie's tongue looked to him like "radiation debris" not infection. We are hoping he is right as the antibiotic makes Ernie so nauseous that he can hardly function. We see the infectious disease doc on Wednesday and hope he agrees with the surgeon.
The swallowing specialist was also impressed with Ernie's progress. His vocal cords look fine but she observed that he is relying on his "false vocal cords" when his voice tires. This is probably a habit he developed when his vocal cords were too swollen to use. She and the surgeon agreed that Ernie would benefit from some vocal therapy and recommended someone at Wake Forest Baptist Medical Center.
The surgeon also had some reservations about the oral infection diagnosis. In his opinion, the coating on Ernie's tongue looked to him like "radiation debris" not infection. We are hoping he is right as the antibiotic makes Ernie so nauseous that he can hardly function. We see the infectious disease doc on Wednesday and hope he agrees with the surgeon.
Thursday, January 26, 2012
Count down
We returned from Minneapolis on Monday. Dad is stable and in the capable hands of my Mom and brother. Now we are anxiously counting the days until our next trip to Baltimore. This time we have three days of doctor's appointments:
Monday is the critical day. This is the day Ernie's PET/CT scan is scheduled. This is a type of nuclear imaging test that sees EVERYTHING in your body (ie-plaque in your veins, inflamed sinuses, and, yes, cancer). The scan is at noon and we see the surgeon for the results at 3:30. In between, we see the swallowing/speech expert. We are most nervous about the scan as it will tell us how successful the chemo and radiation treatments were.
Tuesday we have appointments with the medical oncologist and the radiation oncologist. We suspect that this is the last visit with these two doctors. After this the surgeon becomes responsible for Ernie's check-ups--every 3 months the first year and then less frequently for four more years.
Wednesday we are going to the infectious disease clinic to try to get some closure on the latest infection. The half dose of medicine does not seem to be doing the trick. Ernie has also generously agreed to give more blood for scleroderma research as we will be close by that clinic.
Hopefully, we will no longer need the benefit of all of those prayer lists after Monday but, until then, please wish us well.
Monday is the critical day. This is the day Ernie's PET/CT scan is scheduled. This is a type of nuclear imaging test that sees EVERYTHING in your body (ie-plaque in your veins, inflamed sinuses, and, yes, cancer). The scan is at noon and we see the surgeon for the results at 3:30. In between, we see the swallowing/speech expert. We are most nervous about the scan as it will tell us how successful the chemo and radiation treatments were.
Tuesday we have appointments with the medical oncologist and the radiation oncologist. We suspect that this is the last visit with these two doctors. After this the surgeon becomes responsible for Ernie's check-ups--every 3 months the first year and then less frequently for four more years.
Wednesday we are going to the infectious disease clinic to try to get some closure on the latest infection. The half dose of medicine does not seem to be doing the trick. Ernie has also generously agreed to give more blood for scleroderma research as we will be close by that clinic.
Hopefully, we will no longer need the benefit of all of those prayer lists after Monday but, until then, please wish us well.
Friday, January 20, 2012
Another Turn in the Road
This morning Ernie work up with a mild rash near the joints on his arms and legs. We took out the information sheet on the new drug and sure enough, drug rash is a possible side effect. To quote: "This drug can commonly cause a mild rash that is not overly serious. However, you may not be able to tell it apart from a rare rash that cold be a sign of a severe allergic reaction. Therefore, seek immediate medical attention if you develop any rash."
I am getting gun shy about the "rare" word so my antenna went up immediately. I emailed the doctor a picture of the rash and a description of the location. She replied that Ernie should stop taking the drug and go to the Infectious Disease clinic at Hopkins at the end of January. Unfortunately, this did not make Ernie happy as he wants to be rid of his fungus. So after a phone conversation, they agreed that he would reduce the dose by half and if the rash got any worse he would discontinue the drug immediately. I know he is so tired of being sick but I would like him to remain on this side of the grass. Let's hope that three "rares" is the charm and that this is the mild, not overly serious variety of rash.
I am getting gun shy about the "rare" word so my antenna went up immediately. I emailed the doctor a picture of the rash and a description of the location. She replied that Ernie should stop taking the drug and go to the Infectious Disease clinic at Hopkins at the end of January. Unfortunately, this did not make Ernie happy as he wants to be rid of his fungus. So after a phone conversation, they agreed that he would reduce the dose by half and if the rash got any worse he would discontinue the drug immediately. I know he is so tired of being sick but I would like him to remain on this side of the grass. Let's hope that three "rares" is the charm and that this is the mild, not overly serious variety of rash.
Thursday, January 19, 2012
Working on my MD
Between going to the hospital with Ernie and now my Dad, I feel like I am getting my medical degree. The latest terminology in the lexicon: black box warning. From Wikipedia...
"In the United States, a black box warning (also sometimes called a black label warning or boxed warning[1]) is a type of warning that appears on the package insert for prescription drugs that may cause serious adverse effects. It is so named for the black border that usually surrounds the text of the warning.
A black box warning means that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects"
Of course, the drug that Ernie must take to rid himself of his latest rare infection carries a black box warning for serious heart problems. I must call the doctor immediately if his face or ankles swell or if his heart beats out of rhythm. He started taking it yesterday and so far so good.
My dad's condition is stable at the moment and he has elected to start dialysis to prolong his life. He is being evaluated by the kidney doctor tomorrow to see how soon they think he will have to start. Life definitely comes at you fast.
Monday, January 16, 2012
When It Rains, It Pours
We have not heard from the endocrinologist yet about Ernie's thyroid but did hear from the Medical Oncologist about his oral infection. When we were at Hopkins two weeks ago, they were not sure if he had oral thrush and/or some other infection. They do not like to guess, so they took some swabs. Today the doctor emailed to tell Ernie that he had....drum roll...a very rare infection. That is three rare diseases in three years. I told him if he was going to defy the odds, I wished he would do it via a lottery ticket instead. The Medical Oncologist is consulting with the head of Infectious Diseases to decide what course of treatment to follow.
In the meantime, my dad is failing so we are headed to Minnesota tomorrow. We have been concerned about an infection at the feeding tube site so we stopped in unannounced at Ernie's GI doc today and prevailed upon him to remove the tube. This way we don't have to travel with a lot of paraphernalia. We are both glad to be rid of it. It is one step closer to normalcy, something we are dearly hoping for in 2012.
In the meantime, my dad is failing so we are headed to Minnesota tomorrow. We have been concerned about an infection at the feeding tube site so we stopped in unannounced at Ernie's GI doc today and prevailed upon him to remove the tube. This way we don't have to travel with a lot of paraphernalia. We are both glad to be rid of it. It is one step closer to normalcy, something we are dearly hoping for in 2012.
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