Progress(?) and All Quiet on the Eastern Front

Sunday, August 1, 2011

Progress (?)
Ernie's rash continues to progress.  He now has the complexion of a 16 year old.  The doctor said that when the rash took on an acne-like appearance, Ernie should begin taking antibiotics.  However, we are less than enthusiastic about adding more side effects by introducing a new drug.  Ernie has decided to try to tough it out until Tuesday when he can talk to the doctor again.

To amuse ourselves, we returned to the farmer's market again today.  We love our garden in Fancy Gap and have always joked about doing it because it saved us money but not really believing that to be true.  Now we believe.  Tomatoes cost about $1 each; likewise for a pint of green beans.  We will definitely appreciate our garden more when we return.



Friday, July 29

All Quiet on the Eastern Front

Ernie's family left this morning.  As fate would have it, on the way to the airport the "check engine" light came on.  This same light came on just before our move and we ended up with a $900+ bill so we were not excited about this turn of events.

There is an Audi dealer across the street from our apartment but the nearest service center is in Ownings Mills, MD--a 30 minute drive from downtown Baltimore!  After spending half the morning in the waiting room the service manager said that we needed a $34 part to fix the problem.  Of course, the part was not in stock so we have to go back next week to get it installed.

The best news is that Ernie held his own all day, succumbing to a short nap only when we got back to the apartment.  This is a big improvement from last Friday when he could barely keep his eyes open.  He is already talking about a long walk around the harbor tomorrow.  We will have to go early though as the temps are still 100+ during the afternoon.  Perhaps we will be able to maintain a "normal life" between treatments after all--at least two weeks out of every three.

Family Fun

So far this week has followed the same pattern as last week:  chemo Tuesday followed by two days of steriod-induced energy.   We were able to accompany Ernie's family to the aquarium and on a water taxi ride around the harbor--one of our favorite things to do.  Tonight, we ate our farewell dinner in Little Italy and then watched the local bocce league play until dark.  It was great fun.  We will be sad to see them go. 

Kathy, Tom, Evie and Ernie

Chemo #2

Two down ---not thinking about how many to go.  It was another long day.  After Ernie's blood draw we had to wait 4 hours for his chemo (supposedly 2 to 3 is the norm) as his oncology nurse had an emergency in her pod.  As they did last week, they started him off with saline to hydrate him followed by benadryl and steriods and then the chemo drugs.  They also gave him another bag of saline--and a lecture on drinking more liquids--as his kidney function was on the high side of normal.  Although I think I am pretty good at nagging, it is hard for him to consume the 70 ounces a day of non-caffinated fluids he is supposed to have.  The dietitian suggested gatorade so we will give that a try. 

Ernie's mom came with us to the hospital.  She was very impressed with all the personal attention he got including a visit from his Medical Oncologist who assured her "we are taking good care of your son"; his research nurse who reviews his lab results with him every week; his oncology nurse who administers the chemo and the dietician. 

After the chemo, just like last week, Ernie was in a great mood, had a wonderful appetite and was very energetic.  Even though I know it is the steriods, it is fun to see him back to his old self for a few days.  I am expecting him to morph back into Rip Van Winkle on Friday although the Oncology Nurse said his fatigue may not be as severe this week.  Here's hoping. 

Rip Van Winkle

We are between guests right now.  Jim and Charley left this morning and Tom and Kathy (Ernie's brother and sister-in-law) and Mom are arriving this evening. 

Our wonderful friends--Jim and Charley--brought us many things to cheer us up--zucchini and cucumbers from our garden in Fancy Gap and cooking utensils that evidently are not considered essential by the apartment management.

They nicked named Ernie "Rip Van Winkle" as he slept a good part of their visit.  Both Friday and Saturday, he napped between breakfast and lunch, and after lunch until about 4 PM.  Then he was up for the duration of the day.  He probably felt a bit like Rip Van Winkle because when he woke up from his first nap, Charley and I had rearranged all the furniture.  The place looks much better now. 

Ernie perked up a bit on Sunday so we took Jim and Charley out on the Water Taxi.  The heat was oppressive--the high was 107 on Friday and the other days not much better--so we were all fine to hang out in the apartment until dinner when we would venture out someplace interesting so that Ernie would feel like eating.   




Jim and Charley on the Water Taxi

 This morning Ernie woke up with a rash on his face.  We were warned that this was a possible side effect of the clinical trial drug.  According to the Oncologist, this is "good news" as it means the drug is working.  This cancer is a funny thing as it makes you wish for things you never thought you'd want like HPV and rashes. 

Tomorrow is chemo #2--seems like a long time since chemo #1.  It will be a couple hours shorter as he only gets two of the drugs this time.  We are anxious to see if fewer drugs means fewer side effects.

Stop the World--I Want To Get Off

Well, it has been an action-packed 24-hours!  As Ernie was preparing to take his 10 PM pills, we realized that we made a mistake on his 2 PM pills.  Instead of taking 1-8 mg anti-nausea pill, he took 4-8 mg pills.  We confused this medicine with another that comes in a 2 mg tablet.  Luckily, we had our trusty refrigerator magnet with the 24 hour John's Hopkins hot line number.  Within 10 agonizing minutes, an oncologist assured us that this dosage was nothing to worry about and to resume the normal schedule.  We now have much more empathy for our parents trying to keep all of their drugs straight.

Then this morning we had to leap into action as we only had until 11 AM to vacate our 1 BR apartment.  Of course, this was also a comedy of errors.  Moving carts that we reserved were missing and we had to go prowl around the parking deck to see if we could discover where they were abandoned. 

After the  move was complete, Earl had to be hauled to the vet as he would was highly unresponsive this morning--refusing to eat or play.  Of course, by the time we got him there he was acting normal.  They took his blood and will call us tomorrow. 

We capped off the day by going back to the hospital pharmacy to replace the drugs that Ernie consumed in error.

Of course, these are minor inconveniences compared to the job of fighting cancer.  Ernie held up admirably under all of this.  He is taking many fewer pain pills since his chemo and has had no nausea.  His hiccups also seem ot be less frequent.  He is currently taking a well-deserved nap on the couch--resting up for our guests. 

One of the views from our new apartment

The Morning After

Ernie woke up this morning with a "chemo hangover"--big head and slightly naseous.  But, after popping the requisite pills and a short nap, he was a new man.  He insisted on accompanying me on a 3 mile walk around the Harbor.  After lunch, we got the keys to our two BR apartment and spent the afternoon giving it a good cleaning as we don't want to expose him to germs.  He was a dynamo--scrubbing and vacuuming.  His mood is terrific as well, even with all the cleaning, because he says "I know I have fewer cancer cells today than I did yesterday."  Hiccups are his only obvious side effect.  He thinks he is getting them because he keeps chugging glasses of water.  During our education sessions, they stressed the importance of drinking a lot of water as the chemo drugs are very dehydrating.

We really like the new apartment.  It is a corner unit so much sunnier than our current place.  Plus, it does have many different views (Ernie calls them "peeks" as they are some what obstructed) of  the harbor--including a nice view from the guest room if any of y'all out there are thinking of visiting. 

We move tomorrow morning and host our first overnight guests, the Logan-Stuarts, on Friday.  I am hoping that Charley will help me shop for some chairs for the balcony and rearrange the living room  furniture. 

Done!

We are back at the apartment after Ernie's successful completion of his first chemo!  They hooked him up to the IV about 9:15 and we walked out the door at 4:30.  In between they pumped him full of stuff--saline solution, more anti-nausea drugs, benadryl to reduce the risk of allergic reactions, and finally the chemo drugs themselves.  They started with the most tolerable one and worked their way up to the dicey one.  The doctor was "standing by" during the last drug but her presence was not needed.  The only reaction Ernie had was to the benadryl (see below), which made him nod off periodically.

Ernie naps during his first chemo

He is now free until next Tuesday when he gets his next treatment.  This one will be shorter as the strongest drug is only administered once per cycle (ie-every three weeks).  His instructions for the week include get adequate sleep, stay away from sick people, eat well and no cleaning of litter boxes.  I think he is OK with all of those.

Getting Set....

After whiling away the weekend, it is time to get ready for chemo tomorrow.  We must arrive by 8, although we are told that the chemo itself will probably not start until 9.  The doctor said to allow 8 hours for the first session.  Since you are tied to your pod during the chemo, you must bring food, drink and entertainment to last all day.  Ernie will be armed with his new Kindle plus his ipod, cell phone (336-407-3800 if you'd like to call) and cribbage board. 

This morming we will visit the hospital pharmacy to pick up anti-nausea medication.  He will start taking this tonight at 11 PM sharp (doctor said to set the alarm if necessary) and prior to treatment in the morning.  After treatment and for three more days he will take two different anti-nausea drugs.  He will then be drug free--and hopefully nasuea free--on Saturday and Sunday.  On Monday, we start over again.  Provided tomorrow goes well and he tolerates the clinical trial drugs, this will continue for a total of 9 weeks. 

We are both very nervous about tomorrow.  The doctor stressed that they will administer the drugs very, very slowly and will be standing by if he is one of the people who have a severe reaction to the drug.  Since we have waited an extra two weeks to start treatment to be part of this trial, we would hate to have to leave.  But, whatever will be, will be.  We are learning that it is less stressful not to worry about things you can't control.

On Again

Just got word that Ohio State finished the biopsy and confirmed the HPV+ results! Ernie now has a 100 percent for sure appointment for chemotherapy on Tuesday at 8. Even though he gave a blood sample today the doc said it will take about 8 hours for treatment as she is concerned about him having a reaction due to particular antibodies he produces. We will take the weekend and celebrate. The doc gave Ern some narcotics so he can enjoy himself. 

Off Again

Today was the day we were supposed to receive confirmation of tomorrow's chemo.  We took the 10 AM "heritage" walking tour of Historic Jonestown and Little Italy to occupy our morning then began calling the Research Nurse at John's Hopkins.  By 3 PM, we still had no word.  After many phone calls to the Medical Oncologist's assistants and schedulers, we determined that Ernie would not be having chemo tomorrow. 

Words can not describe our disappointment.  Right now we feel angry and mislead.  Had we not elected the trial,  Ernie would have at least one treatment under his belt by now.  Selecting the clinical trial, we were told, would only add two days to the timeline.  That has not proved to be true.  In fact, we doubt now that he was ever on the schedule for today.

The Medical Oncologist finally called and said there is "a 90% chance" of chemo on Tuesday--still depending on the Ohio State biopsy results.  Originally we were told that the testing had to be done within 5 days of receipt of the sample, so in our minds it should be a 100% chance.  We don't understand the 90% but we are fearful of pushing the doctor too hard--don't want to bite the hand that feeds you as the saying goes. 

Meanwhile, Ernie's symptoms are getting worse.  It is painful for him to eat and he has to take painkillers to sleep at night.  When he told the Medical Oncologist this today, she asked him to come back to the Multi-Disciplinary Clinic tomorrow so they could look at the tumor again.  Hopefully, they will not find any significant changes and we will get this show on the road next week.  It is always darkest before the dawn. 

Getting Ready

Today was a day off from all things medical so we decided to explore more of Baltimore.  We chose Federal Hill--one of the original parts of Baltmore so close to Fort McHenry that residents could watch the shelling of Fort McHenry by the British during the War of 1812.  Many of the old row houses are still standing.  We found a great market there called Cross Market.  It is an indoor market with stalls.  Each vendor carries something differnet--cheese, meat, seafood (including a raw oyster bar) as well as prepared foods for take out.  We want to learn how to prepare the local fish so now we know where to buy them. 

Also on Ernie's list was to find a barber shop.  The chemo drugs he's taking will probably cause him to lose his hair so he decided to get a jump on things and have it shorn instead.   As the barber was shaving his head, Ernie joked that he should have donated to Locks of Love.  I tried to get him to emulate our friend Gil but he decided not to go completely clean-shaven right now. 

BEFORE

AFTER

Chemo U

July 12, 2011

Today we attended an information session for patients who are starting chemo and their caregivers.  We learned that Ernie will get his chemo on the same day every week.  Since his doctor has "clinic" every Tuesday and Friday, one of those will be his day.  Of course, we are hoping for this Friday.  If we miss this window, he will have to wait until Tuesday, July 19.

The morning of chemo, he will have his blood tested.  If his white cell count is OK, the pharmacy is alerted to prepare the chemo drugs.  These two steps consume 2 to 3 hours during which time you must remain available at the hospital.  The chemo itself takes another 2 to 3 hours, which includes getting extra fluids in Ernie's case because of the specific drugs he is getting.  Basically, they advised us to plan on his chemo being an all day affair.

The chemo is given in "pods", which look kind of like corporate cubicles.   There is a reclining chair/bed for the patient and a chair for the one visitor you are allowed.  You can bring your computer, ipod, etc or read or talk on the phone.  They provide free wifi connections..  They also encourage you to bring snacks, etc as you really can't go anyplace while all this is happening. 

After chemo, you are given anti-nausea drugs for 3 days.  The goal is to try to live a "normal life" between treatments. 

Before we left they also armed us with phone numbers where we can get our basic questions answered and a 24 hour hotline should we need urgent attention.   The attention to detail is incredible and makes you feel that everything will go smoothly.  Now if we could only get going....

On Again

July 11, 2011

Finally got the call we were waitng for this afternoon.  Since the lab in Ohio only has 5 days to process the biopsy, the medical oncologist is scheduling Ernie for his first chemo treatment on Friday in anticipation of favorable results on Thursday.  We do not have an exact time yet, nor do we know how long the chemo will take. 

We do know that that first treatment will be longer than the rest.  Evidently, the drug that is the subject of the trial causes a "severe" (i.e.-life threatening!) reaction in more than 30% of  people.  Because of this, the initial treatment is administered VERY slowly with people standing by to administer counteracting drugs if necessary.  Ernie does not seemed terribly concerned about this.  I, however, am a bit more nervous and will do my best to be in the room so I am at least aware of what is happening.  Those that do not have a severe reaction are cleared to continue with the trial.  The unfortnuate are put back on the "standard of care."  Yet another hurdle for Ernie to jump. 
 

Lazy Sunday

July 10, 2011

Gil and Penny left early this morning so we are alone again.  We heard that there is a large farmer's market under the freeway about a mile from us so we decide to check it out. 

These pictures don't do it justice.  It is probably 4 blocks long.  In addition to fresh produce, herbs, bread, cheese and flowers, you can buy locally raised eggs, pork, lamb, and chicken plus fresh and smoked fish.  There are also people cooking omelets and all sorts of ethnic foods.  The freeway provides natural shade--much appreciated as temps have been in the 90s.  We miss our garden in Fancy Gap tremendously but this is the next best thing and will definitely make this a regular part of our weekly shopping.

Diversions

July 9, 2011

Had a great day today with Gil and Penny.  Visited Fell's Point and discovered a Farmer's Market that happens every Saturday.  Took the Water Taxi out to Fort McHenry and learned the history of the fort and the Star Spangled Banner.  (Do you know what spangled means?  No?  Well then come visit and find out.)  Had lunch at an Irish pub in Fells Point followed by a visit to the Aquarium.    Now off to dinner at McCormick and Smick, a seafood restaurant with outdoor seating along the water front.  It's nice to have some fun to distract us from the upcoming week.  We hate that Gil and Penny are leaving early tomorrow.  Will have to find more diversions on our own.

Squeaky Wheel

July 8, 2011

Great news today--the biopsy sample went out yesterday and should have gotten to Ohio today.  Credit goes to Ernie and his willingness to make phone calls and advocate for himself.  This means there is still a chance he could get his first treatment next week.  Fingers crossed.  In the meantime, we are looking forward to showing Gil and Penny around  Baltimore this weekend.  

Highs and Lows

July 7, 2011

People who have undergone cancer treatment warned us that we would have good days and bad but that you have to continue to put one foot in front of the other and move forward.  Today was like that.

This morning we met with Ernie's radiological oncologist to get his opinion on the clinical trial.  (Ernie is allowed to back out at any time.)  We are now three for three meaning all three of the luminary docs from different specialties believe that this trial makes sense for Ernie.  The radiological oncologist also told us that HPV+ tumors have lower recurrence rates--a concern as the trial includes lower doses of radiation--which helped put our minds at ease. 

Feeling reassured, we went out to run some errands.  While we were out the research assistant for the clinical trial called.  In the course of conversation, Ernie learned that his biopsy tissue sample had not yet been sent to Ohio for HPV confirmation.  This must happen before he can start treatment.  Because of this, it looks unlikely that he will start treatment next week. 

We were both devastated.  We don't want to risk the cancer spreading and we are anxious to have this behind us and to come home.  A call to the Medical Oncologist heading the trial revealed that she was gone today and her (brand new this week) research assistant was gone yesterday--so no one was insuring Ernie's tissue sample was sent out as planned.  This means it could be the week of July 18 before he gets his first treatment. 

We are trying to put this behind us.  Technically, as long as he has his first treatment before July22 he won't have to requalify for the study.  But, it will be difficult to be here next week and to feel like we are not moving forward.

 Luckily we are having our first visitors tomorrow.  Gil and Penny just happened to be in the neighborhood (Montana) and are taking a detour here on their way back to California.  We are truly fortunate to have so many good friends like these to bolster our spirits. 

Lab Rat

July 6, 2011

A relatively easy day today, medically speaking.  The docs at the Scleroderma Center asked for Ernie's blood as part of a research study.  They want to know whether cancer causes scleroderma or vice versa.  Come to think of it, so do we--although there is not much we can do about it.  Poor Ernie, I don't know how his veins can stand all the sticking he has been subjected to over the last month.  For his troubles, the nurse presented Ernie with a restaurant guide to Baltimore she put together.  Sweet!  We plan to try as many as we can before radiation starts.

Let the Games Begin

July 5, 2011

Today is the first day of our journey back to normalcy.  After talking to the Medical Oncologist, we decided to join a clinical trial.  The premise of the trial is that the standard 7 weeks of IMRT radiation is "over treating" the cancer, which affects quality of life down the road.  Specifically, excessive radiation can cause "late swallowing toxcitiy" whereby scar tissue in the throat can make swallowing food impossible and cause long-term dependence on feeding tubes.  While this doesn't happen often, it appears that Ernie's scleroderma makes him more susceptible to scaring.  The chance to avoid excessive scaring was key to our decision.  In this trial, if all goes well, Ernie will only have to endure 5 1/2 weeks of radiation. 

Ernie's insurance company approved him for the trial.  All that remains to be done before he can start treatment is to have an independent lab confirm that his tumor is HPV+.  Fingers crossed, this will happen fast and he will have his first chemo treatnment next week.  Chemo alone will last 9 weeks and then be followed by chemo plus radiation. 

To prepare for the radiation, Ernie also had his "simulation" today.  The simulation involves placing him in the same position he will be in during his radiation treatments.  They then make a large "mask" that covers his face, neck and shoulders and conforms to his body.   The purpose of the mask is to insure that he is in the identcal position during each treatment.  They also did a CT and an MRI with contrast so that they can mark the mask with the area to be irradiated.  Finally, he needed a chest x-ray for the clinical trial. 

All of this took about 6 hours.  They told us this would be a full-time job; now we understand why.

Independence Day

July 4, 2011

One of the reasons we moved on Sunday was to avoid the Independence Day traffic.  Our realtor warned us that this being the birthplace of the Star Spangled Banner, the crowds to watch the fireworks would be enormous.  She was right!  Because of the close proximity of our apartment to the Inner Harbor, we could walk to all the festivities. 

The fireworks were the best we'ver ever seen. They eclipsed the Dominos Sugar sign--an icon that normally illuminates the harbor at night.

Unfortunately, the cats did not share our opinion of the fireworks.  Rose howled for much of the night and Earl--well let's not go there.  They finally settled down around 3 AM.   At this point, we are questioning our sanity for bringing them and ourselves for that matter.  As we fall asleep, we keep repeating "it is always darkest before the dawn." 

Home in Charm City

July 3, 2011

We left Winston-Salem this morning with Rose, Earl and the "few" earthly belongings we could not live without for three months.  Earl was very well behaved especially since he's never been on an 8 hour car ride before.  Rose...not so much.

Other than Rose's constant serenade, the trip went smoothly.  We unloaded and returned the trailer and were in our apartment by 5:30.  The contrast between the Winston-Salem house and the apartment was not lost on the cats, who are more than a little stressed.  I try to view it as cozy.