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.

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.

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.

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.

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. 

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. 

Getting Physical

After a massive effort at calorie consumption, Ernie's weight has stabilized at 135.4.  I credit his persistence in eating solid food.  Once he stopped using the feeding tube, he never looked back.  Now the challenge is to put some meat and muscle back on his bones.  He says he is starting to look like Steve Jobs, but not in a good way. 

The Medical Oncologist gave Ernie a prescription for physical therapy and we went for his evaluation today.  The Physical Therapist is going to work on his back, his posture and strengthening his core.  He showed Ernie how to arrange the pillows to take some of the pressure off his back while he sleeps plus gave him some exercises to do.  He will go twice a week at least until we go back to Johns Hopkins at the end of January.

Tomorrow we are going to see Ernie's Endocrinologist to see if the radiation effected his thyroid gland.  There is some concern that he has become hyperthyroid, which could account for his rapid weight loss in the last few weeks.  To quote Rosanna Rosanna Danna: "It is always something." 

Losing the Battle But Winning the War

In the last few weeks, we have been fighting a losing battle on the weight front.  When we moved home to Winston-Salem, Ernie weighed in at around 150.  In the next six weeks, he dropped another five pounds, putting him at 145 at his first check up.  This morning, the scale read 136--a drop of almost 10 pounds in two weeks.  Ernie said the last time he weighed 136 he was probably in the 9th grade.  We have upped his daily calorie count from about 1700 to 2100 to try to stem the loss, which is really sapping his energy. 

We may be losing the weight battle but are winning the feeding tube war.  With the thrush under control, Ernie has far less pain in his throat and can now tolerate cold foods like high calorie ice cream.  The dietitian gave us a shake recipe that has over 700 calories.  With two shakes plus a few helpings of pudding and a bit of solid food, Ernie ate 100% of his calories sans tube yesterday!  This is the first time he hasn't used the tube in over 3 months.  We feel certain now that the tube can come out on our next trip to Baltimore at the end of January. 

Doctors, Doctors Everywhere

It is 8 PM and Ernie and I are both propped up in the bed exhausted.  We got up at 5:45 AM so that Ernie could "eat" and we could be at the hospital by 7:15.  He started with a blood draw followed by an MRI with and without contrast, an appointment with his surgeon, an appointment with his medical oncologist, an appointment with his radiation oncologist, more blood drawn for a research study on scleroderma and, finally, an appointment with his scleroderma doctor.  Whew!

Here is what we learned:
1.  Ernie's white counts are still low so he must continue to "be careful."  This means wearing a mask on airplanes, and continuing to stay away from sick people. 
2.  The MRI was encouraging.  It is very early for this test because Ernie still has a lot of swelling which can "light up" like cancer on the MRI.  While there were some spots that did light up, there were no obvious masses.  Also, Ernie's lymph nodes--where the cancer had metastasized--were back down to the normal range in size.  The definitive test--a PET/CT--will be on January 30.
3.  The thrush was less apparent and may be gone.  The doctors took a culture to see for sure, In the meantime, Ernie will stay on the antibiotic.
4.  The exterior of his neck healed extremely well.  However, his lymphatic system was damaged by the radiation.  This is common and presents itself as externally visible water retention in the throat and neck.. There are therapists that specialize in this area so we are to look for someone locally to help us.  This condition usually resolves in about 6 months. 
5.  The interior of Ernie's throat is still swollen but the open sores have healed.  Although he still has swelling and a lot of mucous, the doctors said Ernie can start to recline more when he sleeps.  For more than three months he has had to sleep siting completely upright.  He can now recline as much as he wants as long as he keeps his head above his heart and doesn't choke.  If he chokes, he needs to sit  more upright until he finds the point where he no longer chokes. 
6.  Ernie can start exercising again. He will be working on strengthening his neck and back, which suffered from his forced sleeping position. 
7.  The chemo drugs seemed to keep the scleroderma at bay as the oncologists thought they would.  Now that the chemo drugs are being purged from Ernie's system, he is experiencing the return of some symptoms, especially swelling in his hands.  The scleroderma doctor told Ernie to monitor his skin and blood pressure and to alert her immediately to any changes.

On another positive note, Ernie continues to add new foods to his repertoire daily.  Today he ate a large bowl of clam chowder and declared that parsley tasted like parsley. This is excellent news especially considering that many people don't get their taste buds back for six months or more.