Thursday, July 11, 2013

2013 Stupid Cancer - Living With Melanoma - Part 4

January 5

We just got back from San Francisco and I'm too tired to write much, but I want to log what I remember.

The trip over was excellent.  We left home at 7:30 and got to the motel at 12:00.  We walked along Chestnut Street, looking for a movie to go to in the evening, but there was nothing playing that we wanted to see.  We went to Amici's Pizza for lunch and thought the pizza was perfect. We stayed at Cow Hollow motel on Lombard. It was okay, large room, clean, but had a lot of street noise until a little after 2:00 am and the bed was not comfortable - kind of hard.  I think if we hadn't forgotten to take some kind of sleeping pill with us, I would have been able to sleep, but I was awake until after 3:00.  

Bill saw Dr. Minor at 3:00 pm on Friday.  Dr. M said he is still doing very well.  He wants Bill to have a colonoscopy before resuming the Yervoy treatments, though, so Bill is not at all pleased at that. The colonoscopy is will be around mid January, and he will have a PET and CT January 29.  Our next doctor visit is scheduled for Feb 15, and the Yervoy should be starting then.  

Kida and Dogs at Play

View of the bay from the park

After seeing the doctor, and getting out by 3:45, we had the rest of the afternoon and the whole evening to enjoy.  We went to Alta Plaza park, near Pacific Heights, to walk for about an hour.  We watched kids and dogs and enjoyed the warmth of the 50+ degree day.  

After the park, we drove to Union Street and walked until almost 6:00, stopping in antique stores and little shops to browse. It started getting cold, and Bill's leg was bothering him, so we headed back to the car, to discover that we had walked more than 16 blocks.  It won't compete with Tony's treks, but it was good for us, considering Bill's sore leg and my broken toe.

 We went back to the motel and walked across the street to Mel's Original Diner for a sandwich.  We got back to the room around 7:00 and read until after 9, enjoying the sounds of people passing outside our window.  We were glad we were on the third floor.


Gnarly tree with shadow



We had planned a visit with Glenn and Michelle for this morning, and we were getting ready to head over to a restaurant for coffee when Michelle called to say that Glenn wasn't feeling up to visiting.  He has been having a lot of pain.  He will be starting a clinical trial next week, and we are praying that he will respond well to it.


We left right after Michelle's call, at 8:30, and we stopped for gas in Dixon and breakfast/lunch in Truckee. We got home at 1:35. making very good time for both legs of the trip.





January 5

Good morning everyone.
A brief update on Glenn. He's having a lot of pain but the pain medication does help. It is a bit difficult for him to get around as most of the pain is in his lower back and hip.
On Tuesday we will go into SF to begin his clinical trial; not sure if it will be chemo or immunotherapy at this point; we'll find out then.
In the meantime, it would be really helpful to have some dishes that he likes. His appetite is still pretty good.
Thank you all so much.
Love,
Michel

 January 7

 Not the news we wanted to hear.
Due to some problems with his last liver biopsy, they do not have the needed information for the clinical trial (experimental treatment) that was to begin tomorrow. In addition, Glenn has been in a lot of pain and has had some other related medical difficulties lately. So the oncologist wanted him in the hospital. He will also have another biopsy done then.
We're not sure how this will affect the clinical trial; we should know tomorrow.
Glenn will be at California Pacific Medical Hospital, probably for at least 3 or 4 days. I'll keep you posted on visiting, etc as soon as we know more.
Those of you that bought food and came by this last week: thank you!
Love to all of you...
Michele

 We are praying especially hard for Glenn.  He is going through an especially difficult time.  We are not close enough to be able to do anything to help Michele with his care, but we have let her know that our thoughts and prayers are with them. 

January 8

 We had a consultation with Digestive Health Associates today.  Dr. Minor wants Bill to have a colonoscopy before he will resume the Yervoy.  It will include biopsies of his colon just to make sure nothing is going on. The PET and CT will be done at the end of January.  Then, he will be all set.

 When the nurse came into the room to transcribe all the information from the forms to the computer, she was coughing and sniffing.  Bill and I kept looking at each other, thinking she should have stayed home.  When she was finished with the computer, she got up and walked over to the stethoscope  putting it around her neck.  I told her, very nicely, that I wanted her to wash her hands, because Bill has little resistance to germs.  She did it, but told us that she wasn't sick.  She had choked on a sip of water just before walking into the room.  Sure she did! 

January 11

 Bill has come down with a bad cough but no fever so we don't think he has the flu.  We don't want to take him to the doctor or hospital because the flu has become an epidemic, and it seems safer to keep him here and treat him with decongestants.  We can't help but wonder if the choking nurse could have contributed to this.

 January 13,

Bill's cold was worse today, although he still has no fever, so we are sure it is a cold.  He was asleep by 9 last night and slept through the morning.  I checked on him often but finally I woke him at 1:00 pm up and told him that he had to get out of bed to eat and drink.  We can't let him get dehydrated, or he could end up in the hospital, the exact place he adamantly doesn't want to go. He dozed a lot the rest of the day, but I was able to get some cereal, banana and a small piece of toast into him, along with several Gatorades, and a fruit smoothie with protein powder and lots of strawberries and blueberries.  


January 14

We got some upsetting news from Michele and Glenn yesterday.  It wasn’t unexpected but still…. Glenn is such a good man, and he and Bill were good for each other.  There is nothing we can do to help, except to let them know we care. 

Dear All,

I wish I had better news to report, but Glenn’s cancer has spread very rapidly, and he is no longer a candidate for a clinical trial.  Another tumor is pressing on his spine, and he is not able to walk.  There are also tumors on his liver.
He went into the hospital on Tuesday in SF for pain management.  He will be coming home tomorrow (Monday) where we have arranged for Hospice and 24 hour home care.
 
Glenn has been amazing through all of this: strong and ever optimist.  Now, with our recent news, Glenn continues to be brave and open and loving.  Visits, calls, and emails are welcome.  I will be posting more on the website mycancercircle.lotsahelpinghands.com.  Most of you have signed up on this; I sent you all invitations a week or 2 back. It lets me post what’s going on and request help as needed. 

We are very grateful for all the support, on all levels, you have provided during this last year.

Much love to you all…
Michele and Glenn


Dear Michele and Glenn,

We hope you know how we feel. Meeting you and Glenn was such a boost for both of us. We're very glad we got to know you. Bill has hoped that he might be a little bit of an inspiration to Glenn.  We have often talked about the time you met us in San Francisco at Haystack Pizza for a delicious dinner, and then went back to the Inn to spend some time in the hot tub with us. Besides being very sad that Glenn's cancer has spread and he can't have the clinical trial, we feel that there is nothing we can do to help you.  Please know that we care very deeply, and wish we were nearby to be able to visit and lend more than moral support.  We're glad you have a large circle of family and friends to be with you.  We will call you soon. 

Love,

Bill and Billie

January 30

We were happy to receive the email below from Michele and Glenn. With both of us being sick since mid-January, I haven't called them, but I have been thinking of them a lot. I will call this evening, to let Michele know that we are doing well, and hoping Glenn will continue to feel as good as he does now. We will be going over to San Francisco to see Dr. Minor in two weeks, but we are planning to drive down to Santa Maria to stay a couple of nights with Monique and Brian, so we won't be able to visit Glenn and Michele. Hopefully, the next time we go, in March, probably, we will be able to see them.

Finally, our colds have cleared up, and so has the weather.  We were getting tired of the temperature being in the 20s and 30s during the day, and the teen or below at night.  Today, it is 50 and we got out for our first walk in three weeks.  It felt wonderful to be moving in the fresh air.  When we got home, I worked in the yard, and Bill did a lot of work in the garage, putting away most of the Christmas boxes.  We can see the garage floor again!

Bill had a PET and a CT yesterday, and next Monday, he will be having the colonoscopy (do you hear cheering in the background?  He is so excited about this.)  There is a Super Bowl party at our community center (The Villa) on Sunday, which we had thought of going to, but all 200 tickets were sold out almost as soon as they were printed. It's just as well, because there are still lots of sick people around, and we don't need any more germs.  Also, Bill will have to be on liquids only on Sunday, so going to a party where there is lots of good food would not be a great idea.

From Glenn and Michele -

Hello all.


Last Thursday afternoon we went for a ride up in the Berkeley/ Oakland hills. It 
was great for Glenn to get out of the house and visit some of his favorite East 
Bay places. Bro-in-law Richard drove, and my sister Ellyn and I were in the 
back. It was a wonderful couple of hours with beautiful views and lots of 
reminiscing.  A very enjoyable day for us all.

Glenn continues to be amazing; always kind and caring and concerned about 
everyone else. His pain seems to be managed for the most part, and he is still 
able to eat some of his favorite foods. Thanks to those of you who have dropped 
off food, emailed, written, called, and visited. All have been greatly 
appreciated.

I will not be posting on the cancer/helping hands website anymore. In theory a 
great idea, but in reality a bit too much to keep on top of.

Much love to you all...

Michele and Glenn
Glenn Enjoying the Day
February 14 - Valentine's Day

We are spending a quiet day at home because tomorrow, we are off to San Francisco.  The weather is going to be perfect, so we are looking forward to a good trip.  We were thinking of going to Santa Maria for a couple of days after leaving the doctor, but they are going to be moving up to Petaluma in the next few days, so it would have been inconvenient for us to be there.  We will plan to see them in Petaluma the next time we have to go to SF.  That is a much shorter drive for us, so we are happy they will be there.





We got sad news from Michelle last night.  

Dear family and friends,

Glenn died peacefully at home last night at 11.

A couple of weeks ago he told me that the last few weeks had been among the "happiest" of his life. He was so moved by all the love he had received from family and friends, and grateful that he had had the opportunity to return it.

I have a huge hole in my heart, but the 17 years we were together were truly a gift.

We are in the process of figuring out how to memorialize Glenn, but I know for sure that it will involve good food, funny stories, and the celebration of a generous and loving man.

Thanks for all the kind wishes and good thoughts you sent his way. I know they helped.

Much love to you all...

We are sad for them, and we will miss our communications with Glenn.  He had such a good attitude, and he made the best of everything.  We are so glad that we were able to spend time with them, and get to know them a little bit.  He was an inspiration to Bill.

6:00 pm 

We got a call from Dr. Minor's office this afternoon. The insurance company hasn't given their authorization for the Yervoy treatment, so we had to move his appointment to next Friday instead of tomorrow.  This is the drug that has been keeping the melanoma from growing throughout his body, but they aren't sure if he will be able to get it again.  The problem is that the FDA has only given approval for four doses of the drug.  Dr. Minor, because he is a research doctor, has been able to give more than four doses but, if the insurance company has decided that they won't pay for it, there is nothing we can do.  We just don't have $62,000.00 to pay for each treatment.  We just went back and counted all the Yervoy treatments and found that he has had six of them.

Monday, Feb 18

What a surprise we got this morning.  It is President's Day, so we didn't expect to have any news about the insurance company review board's decision until tomorrow at the earliest.  We got the call at 9:15, from Erma, Bill's latest nurse liason, that she was working on his case and she would call as soon as she had any news.  Less than two hours later, she called to say that his drug has been approved for four doses between now and August 16.  Since his doses are usually three months apart, we know he won't be getting the fourth dose by then, but he can probably get three.  Then we will have to go through the same screening process again, but at least the next time, because we know what will happen, the doctor's office can put in the request a couple of weeks before his treatment, so the approval will come through and we won't have to change our dates.

Saturday, Feb 23

 We had a wonderful trip.  Although snow was predicted for the weekend, including Friday, the weather was perfect both ways.  We got to the Powell Hotel in Union Square by 11:30 and were able to check in early.  The hotel is old and kind of quirky/elegant. We drove over to Gilardellhi Square and walked a bit before finding a place to get a bite of lunch before going to the doctor.  We walked along the waterfront.  It was surprising how many people there were everywhere, but then we realized that we were in a tourist town, and not everyone goes there for our kind of reason.  We had a small pizza and Bill enjoyed a beer which is a rare treat for him.  We got to the doctor's building a little more than a half hour early for his 1:20 appointment, and it took me almost that long to find a parking place.  I dropped Bill off at the door so he could go up and get his blood work started.  I ended up with a spot just over a block down the hill.  Why is everything uphill from wherever you park?  The doctor continues to be pleased with Bill's progress and he had his treatment.  We got out of there at 5:00.  

We had planned to find a place to park on the street, but we found that one block to the south of the hotel, there was a homeless shelter, and there were homeless people milling around everywhere.  So we ended up paying $38.00 to valet park.  After going up to the room to change into our walking shoes, we walked for almost an hour through the Tenderloin District, but we were able to stay away from the area that was scary. We found a place that had "homemade" meat pies, and, knowing that we were just about six blocks from the hotel, we got those to take back with us for dinner.  We got back just after 6:45, and had our pies, which weren't as good as they had smelled, but they were edible.  We got to sleep sometime after 9:00.  The room was a bit noisy, with music and traffic from the street.  We decided that having a quirky hotel is not as fun as it sounded, and the next time, we will stay back near Lombard Street, where we were the last time. At least there, we had free underground parking.

Tony had called when I had my phone turned down in the doctor's office, so I called him back, and he couldn't talk.  About an hour later, while we were walking, I heard my phone from my pocket and I talked to him for a few minutes, but it was cold, and we wanted to finish our walk, so we didn't talk long.  He told me to listen to my messages when I had a chance.  I wish I could put his two four-minute messages on Facebook, or on this blog so everyone could enjoy them. How can anyone talk for four minutes, non-stop, about nothing?  And keep us laughing all the while?  He is amazing.

We stopped at the Dine and Dash just outside of Colfax for lunch.  The food and service were fantastic, so we have found the perfect place for getting a meal on our SF trips.  It was good to get home.

February 27

We finally got the call from Dr. Minor's office with Bill's January test results.  He hadn't received them by last Friday. Bill is in remission!!  The tumor on his adrenal gland is totally gone, and everything looks great.  We've been getting outside to walk as the weather has warmed up.  Since February 20, we've walked seven miles, nothing to write home about, but it's a start.

The testosterone injections that I was worried about are going well.  Bill tolerates them without a whimper and I'm not scared to plunge the needle in.  It is still a challenge to pick a spot, because whether it is in his rear or his arm, it hurts for a couple of days afterward, so it is either hard to sit on it, or to lay on it in bed. At least we don't have to put up with that awful smell any more.

 March 2

 I guess we shouldn't try to relax and pretend things are normal.  This morning, around 9:00, Bill said his left hand felt as if it wasn't there.  His blood pressure was just a little bit higher than normal.  I called our primary care doctor, and, by the time he called me back, about 15 minutes after I had called, Bill was back to normal.  The doctor said to keep an eye on him, and that he should probably be seen on Monday.  We had breakfast and an hour later, it happened again.  I said we were going to take a ride to the hospital, just in case, and he didn't argue.  On the way, his whole left arm was numb, and he was having trouble thinking of and forming words. There was also pronounced weakness in his left arm and leg.  They did a CT of his brain and chest and concluded that he had a Transient ischemic attack this morning.  It is better known as a TIA.  I'm going to paste the information about that below for anyone who wants to know more.  He has to stay overnight at St. Mary's Hospital.  I came home to get his pillows and some other comfort things, and I'll go back in a few minutes to stay with him until after dinner.  When I left, he was still in the ER, waiting for a room.  His arm and was feeling almost normal, and the weakness in his left side is gone.

 I got back to the hospital in time to see the echocardiogram.  It is fascinating to watch.  Bill finally got a room at 4:30.  He rested for a little while and then we played Quiddler for an hour until dinner arrived.  We played again after dinner until I left to come home.  He is feeling totally normal.  We just need to find out why this happened and fix it.

Transient ischemic attack

Mini stroke; TIA; Little stroke
A transient ischemic attack (TIA) is when blood flow to a part of the brain stops for a brief period of time. A person will have stroke-like symptoms for up to 24 hours, but in most cases for 1 - 2 hours.
A TIA is felt to be a warning sign that a true stroke may happen in the future if something is not done to prevent it.

Causes, incidence, and risk factors

A TIA is different than a stroke. After a TIA, the blockage breaks up quickly and dissolves. Unlike a stroke, a TIA does not cause brain tissue to die.
The loss of blood flow to an area of the brain can be caused by:
  • A blood clot in an artery of the brain
  • A blood clot that travels to the brain from somewhere else in the body (for example, from the heart)
  • An injury to blood vessels
  • Narrowing of a blood vessel in the brain or leading to the brain
High blood pressure is the number one risk for TIAs and stroke. The other major risk factors are:
People who have heart disease or poor blood flow in their legs caused by narrowed arteries are also more likely to have a TIA or stroke.

Symptoms

Symptoms begin suddenly, last only a short time (from a few minutes to 1 - 2 hours), and go away completely. They may occur again at a later time.
The symptoms of TIA are the same as the symptoms of a stroke, and include sudden:
  • Abnormal feeling of movement (vertigo) or dizziness
  • Change in alertness (sleepiness, less responsive, unconscious, or in a coma)
  • Changes in feeling, including touch, pain, temperature, pressure, hearing, and taste
  • Confusion or loss of memory
  • Difficulty swallowing
  • Difficulty writing or reading
  • Drooping of the face
  • Inability to recognize objects or people
  • Lack of control over the bladder or bowels
  • Lack of coordination and balance, clumsiness, or trouble walking
  • Loss of vision in one or both eyes
  • Numbness or tingling on one side of the body
  • Personality, mood, or emotional changes
  • Trouble saying or understanding words
  • Weakness on one side of the body

Signs and tests

Almost always, the symptoms and signs of a TIA will have gone away by the time you get to the hospital. A TIA diagnosis may be made based on your medical history alone.
The health care provider will do a complete physical exam to check for heart and blood vessel problems, as well as for problems with nerves and muscles.
Your blood pressure may be high. The doctor will use a stethoscope to listen to your heart and arteries. An abnormal sound called a bruit may be heard when listening to the carotid artery in the neck or other artery. A bruit is caused by irregular blood flow.
Tests will be done to rule out a stroke or other disorders that may cause the symptoms.
  • You will almost always have a head CT scan or brain MRI. A stroke will show changes on these tests, but TIAs will not.
  • You will have an angiogram, CT angiogram, or MR angiogram to see which blood vessel is blocked or bleeding.
  • You may have an echocardiogram if your doctor thinks you may have a blood clot from the heart.
  • Carotid duplex (ultrasound) can show if the carotid arteries in your neck have narrowed.
  • You may have an EKG and heart rhythm monitoring tests to check for an irregular heartbeat.
Your doctor may do other tests to check high blood pressure, heart disease, diabetes, high cholesterol, and other causes of, and risk factors for TIAs or stroke.

Treatment

The goal is to prevent a stroke.
If you have had a TIA within the last 48 hours, you will likely be admitted to the hospital so that doctors can search for the cause and observe you.
High blood pressure, heart disease, diabetes, and blood disorders should be treated as needed.
You may receive blood thinners, such as aspirin, to reduce blood clotting. Other options include dipyridamole, clopidogrel, Aggrenox or heparin, Coumadin, or similar medicines. You may be treated for a long period of time.
Some people who have clogged neck arteries may need surgery (carotid endarterectomy). If you have irregular heartbeats (atrial fibrillation), you will be treated to avoid future complications.

Expectations (prognosis)

TIAs do not cause lasting damage to the brain.
However, TIAs are a warning sign that you may have a true stroke in the coming days or months. More than 10% of people who have a TIA will have a stroke within 3 months. Half of these strokes happen during the 48 hours after a TIA. The stroke may occur that same day or at a later time. Some people have only a single episode, and some have more than one episode.
You can reduce your chances of a future stroke by following-up with your health care provider to manage your risk factors.

March 3

 I got to the hospital this morning at 6:45, to find Bill sleeping soundly.  He had a good night, or as good as one can have in a hospital.  He felt great, with all the symptoms still not there. He had breakfast, and we read the paper and our books, when, at 9:00 am, a terrible racket started.  It sounded like someone was jack-hammering the wall or ceiling behind his bed.  After 15 minutes, I stepped next door, to the nurses workroom and asked if the nurse knew what was going on and how long it would last. After an hour, she came in to tell us that there was construction going on, and they were sorry. 

 The doctor finally showed up at 10:30.  She had to yell to tell us that all the tests showed he is perfect inside and there in no damage to arteries, heart, or brain.  She said he should talk to his cardiologist about taking an aspirin every day.  He used to do that, but when he started on Xarelto, which is a blood thinner, the doctor said to stop taking aspirin.  Because of this event, she thinks he should take them again.  So, on Monday, we will call Dr. Ichino, the cardiologist, to see what he thinks.  She said she would write release orders, and he could go home as soon as they were processed.  His nurse, Cheryl, came by at 11:05 to tell us that she had several people to do blood work on, and she would get to him as soon as she could but probably not until after lunch.  His lunch was a chicken thigh, rice and green beans, all of which were uneatable. And, wouldn't you think hospitals would serve skinless chicken?  

 We waited until 1:15 with the unholy noise continuing.  I went out and asked the floor supervisor, which was his nurse, if it would be possible for him to be moved to another room to wait, and she said she didn't have anything else.  I said the noise was unbearable and she apologized again.  At 1:42. Cheryl came in to remove the heart monitor and the IV's from both arms.  The right arm was fine, but, she put the cotton ball and tape on his left arm.  Then she started to remove the heart monitor.  Suddenly, she looked at his arm and yelled,  "Oh my God." and told me to get her some gloves.  His whole side and lap were soaked with blood.  He was watching her, so he hadn't noticed.  She said it looked like the needle had been in an artery. I got a towel from the bathroom and put it under his arm to keep the blood more contained.  It took almost 10 minutes of constant pressure to get the bleeding stopped.  She had us wait for 10 more minutes to make sure it didn't start up again, and we were finally able to get on our way. 

 It rained all day, which was a nice change, but we have been enjoying our nice clear 50+ degree days, and we would like them to come back tomorrow.

 April 8


Dr. Minor’s office called on Thurs at 3:30 to tell us that Dr. Minor would be leaving early and moving our appt up to no later than 11:30.  That meant that, instead of leaving home at 7:00 and getting to SF by noon, we had to leave at 3:30 so we could miss the commuter traffic in Sacramento, Fairfield, Vacaville and going into the city.  We don’t like to drive over the summit in the dark, but it went very smoothly, and we actually got to San Francisco by 7:30, only a four hour drive.  The only tie up was after passing the toll booth and waiting to merge onto the Bay Bridge.

His appointment was for 11:30, so at 9:00 Bill called to ask if it could be moved to an earlier time, and they said to go in and they would see what they could do.  Dr. Minor came into the exam room at 9:30 and we were out of there at 10:50. Bill is doing great.  His questions were, 1. Why is he getting Michael Jackson skin?  Answer – That means the drug is acting on the melanonin in his skin and working as it should be working. 2. Why is he still having such bad leg pain when he walks, in the area that he had the last blood clot? Answer .  It could be scar tissue ischemia, which is a decrease in the blood supply to a bodily organ, tissue, or part caused by constriction or obstruction of the blood vessels.  He said to see our primary care doctor and have a Doppler Circulation Study done on his leg to see if there is a fix. That is basically an ultrasound to see if the veins are narrowed or damaged. We arranged for his next Yervoy to be May 17 and we will stay with the Bendzicks again.  We are so lucky to have such good friends who moved to the immediate area, so we can avoid staying in hotels or inns, and also not have to eat in restaurants.

So, we were on our way to Petaluma by 11 and we got to Brian and Monique’s house before 12.  We had a wonderful weekend, even though it was overcast and drizzly for a lot of the time. Friday night we went out to dinner, because Monique ended up working a little late and didn't feel like cooking when she got home.  It was a wonderful excuse to have delicious pizza and a lovely evening walk along the Petaluma River.  
On Saturday, they took us to Bodega Bay and we hiked down to the beach from the cliffs above and it was a wonderful workout.





 That evening, two of their granddaughters came over to spend the night and in the morning, their oldest son and his family came over for breakfast.  It was wonderful to be able to get together with part of the family. We left at 11:00 am because of the weather and we’re glad we did, because we woke up to snow this morning.  We might have had to chain up if we had left in the late afternoon as planned.

 April 20

 On Monday,  Bill saw Dr. Geni to see about having tests done on his leg.  De, Geni doesn't think his problem is in the veins, but in the arteries.  On Tuesday, he cut his finger slicing a banana for his cereal, and after 1 1/2 hours of oozing, we finally called the doctor to find out if he should be seen.  They were booked, so we visited Urgent Care and the doctor put a layer of glue on the cut.  The oozing has continued but it is finally getting better.  On Thursday, we went to the Heart Institute at Renown.  They checked the blood pressure in both arms as well as his legs, and did an ultrasound of both legs. The right one took almost an hour, while the left took only about 15 minutes.  The results showed a blockage of the artery in his right leg. On Monday, he has an appointment for an ultrasound of his carotid artery and on Tuesday, with a vascular surgeon.  Maybe we'll know what they can do to help him.  Today we went for a walk and did only .42 mile in 18 minutes.  We were on dirt and partly uphill, but we should have been able to do it faster.  After that, we did 35 minutes of water aerobics, which Bill can do without pain.


 April 30

 The CT/angiogram gave Dr. Hansen a good picture of exactly where the blood clot is lodged.  It is in the artery just below his knee. His options are 1. leave it alone and live with it or 2. try to remove the clot.  If the clot is too old, it will be impossible to remove.  Apparently blood clots become more hardened with age.  If it can't be removed, it would be option 3. a bypass which will allow the blood to return to his foot by a different path, restoring his circulation to near normal.  There is no danger in leaving it there.  It isn't at risk of breaking off and going anywhere, and, because he is on a blood thinner, it won't grow larger.  The doctor's advice was to leave it alone and live with it.  Bill wasn't interested in that because he wants to be able to walk and hike without pain, so he will be going in for surgery on Thursday, May 2.  If it can be removed, he will be in the hospital for two or three days.  If the bypass is done, he will have to stay for three or four days.  I have postponed his CT and PET scans which were going to be on Thursday until next Tuesday.  That should give them plenty of time to get the results over to Dr. Minor by our next appointment on May 17.  We are very optimistic about this step toward getting rid of the leg pain and improving the circulation in his leg.

May 3  6:12 am

 The clot couldn't be removed, so the doctor took a vein from a different part of Bill's leg and did the bypass, so he has three incisions.  

 Kathy and Rommie and the girls came to see Bill in the hospital last evening, around 7:30.  He had been in recovery for almost three hours, but they hadn't secured a room for him until 6:45 and then it had to be cleaned.  Bill was finally brought into the room a few minutes before 8:00 very groggy, a little bit nauseated and in a lot of pain.  We all saw him for just a few minutes and then we left so he could get some sleep.  I had planned to spend the night with him, but he is in a semi-private room so he has a roommate who should be there for just one night and there will be another one.

 I want to get over to the hospital right away because Bill just called and said they don't have one of the prescriptions he needs in the morning. He is doing okay, but he is on morphine and is in a lot of pain.  He didn't sleep well last night but he sounds a lot more alert.  

Below are the communications via Facebook, yesterday.

Billie Garrow
12 hours ago via mobile
Bill's surgery is over. The blockage was so bad that the surgeon said that he was surprised that Bill could walk at all for the past several weeks. He removed a long vein and replaced one branch of the artery in his lower leg so Bill has three incisions. He now has near-normal blood flow. He'll be in Renown for three our four days and recovery should be three or four weeks. Thanks to everyone for the prayers and good wishes.
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Billie Garrow
Wednesday via mobile
Bill will be having surgery on May 2 to try to remove a blood clot in the artery in his leg. Good thoughts, please.
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5:20 pm

 I stayed at the hospital from 7 until just before 5 today.  When I got there, Bill was watching the news.  He said he hadn't slept but had dozed a few times.  They wouldn't give him any sleeping pills because of having anesthetic recently.  He was in quite a bit of pain all night.  Breakfast, of sausage and French toast and creme of wheat came at 8:00.  Dr. Hansen came by just as Bill was finishing his breakfast.  He said Bill is making good progress.  He expects to be able to send him home on Monday or Tuesday.  He didn't want Bill getting out of bed, yet, but probably he will be able to get up tomorrow.  He changed the pain medication from morphine to dilaudid, and that worked much better.  His leg mostly hurts when he flexes his ankle, so he is trying not to do that.  I always forget how silly he gets when he is on dilaudid.

 Bill kept me entertained, but he also couldn't keep quiet for more than a couple of minutes at a stretch.  At one time, while he was supposed to be napping, and I was reading, he talked about nothing 12 times in 10 minutes.  He thought the colored panels on the ceiling were in 3D and were moving.  He also had strange half-awake dreams.  One of them was after his eyes had been closed for almost five minutes, he startled and said that Tony the Tiger and Lucille Ball were in court during a murder trial.  He had no idea why they were there, just that he saw them.

 I left him for almost an hour, hoping he would get some sleep, but when I got back, he was sitting up playing a game on the computer.  He was having trouble playing, though, because the cards kept moving around.  We played a card game for a while this afternoon, when some of the meds had worn off, and he was able to focus better.







His roommate was released, so I arranged to get him moved to the spot by the window instead.  There is a little couch and a large window. The nurses promised to move him as soon as the room is cleaned so tomorrow, we'll be able to look out the window and I'll have more room to move around.

 May 6

 The king will be returning to the castle tomorrow.  The IV was taken out yesterday, so all he has now is the one in his hand, which they leave in just in case. It has been a long few days for him.  He has been great about going for walks throughout the day. He walked through the hospital corridors three times today.  He's trying so hard to get strong so he'll be able to get around the house when he goes home tomorrow.

His first walk - the nurse is walking right behind him



Finally, home
May 8

 Bill was ready to go home on Sunday, but with his incisions oozing, I was glad he was in the hospital where the nurses could change his dressings.  Now it is up to me, because he came home yesterday.  He is doing great, even walking around the house without using the walker that was provided by our insurance.  I think we will keep it in the car for when we have to go to the doctor, but I don't think he will be using it very much.  

 May 15

 The doctor removed 75 staples from Bill's leg yesterday, so he is feeling so much more comfortable. We're sure he will be walking without pain by June 9 for our cruise.
Day 3
Day 12




















May 23

 Bill's leg is continuing to improve.  Yesterday, when we walked to the mailbox, he was able to walk at an almost normal pace.  The pain is getting much better.  

 We went to Petaluma last Thursday to stay with Brian and Monique, and drove to San Francisco on Friday morning.  His treatment went well.  The latest scans showed nothing new going on, so we are very happy about that.  
Day 21


June 23
We're home from our cruise.  Here is the link to the cruise blog.   http://allthegoodtitlesarealreadytaken.blogspot.com/2013/06/alaska-at-last_29.html
We had a lovely time, and Bill did great.  

 He still has some issues with his leg but we hope that being back on steady ground will make a difference.  He will see his surgeon in about two and one-half months.  We visited Dr. Minor before leaving the bay area and he said that Bill is still in remission.  He will get his next dose of Yervoy in early August.  The dose is going to be increased by 1/3, and that makes us a little concerned because if he is still doing so well why can't he stay at the dose that isn't causing him major side effects.  But, Dr. Minor isn't concerned, so Bill will do whatever he says.  


July 11

Update - Bill went to see our GP last week, because of a sore throat.  He had strep and started antibiotics the next day. He was having a lot of fatigue for a few days, but that finally resolved, although he gets tired easily and he takes a rest or a nap almost every day.  We have been going swimming every day instead of walking mostly due to the heat.  Temperatures have been in the low hundreds down to the low nineties.  His leg continues to feel a little better every day.

 I came across a paper Bill wrote on the computer at the end September of 2010, when he was feeling very discouraged. He had been diagnosed with Bell's Palsy and was feeling very discouraged.  He didn't think he was going to live through it.

I am writing this because I am having difficulty speaking and I want to get my thoughts across.



I am having severe difficulty breathing.



I am very emotional and embarrassed because I cannot communicate well.



I cannot breath lying down (side, back or chest).



Sitting up works ok, but not great.



It seems to worsen when I get emotional or try to speak.



If I relax, words come easier.

 I'm scared.
He has come such a long way since then. His outlook is so much better, because he has hope due to the Yervoy doing its job so well. He went to his dermatologist two days ago and she was extremely pleased with his progress. 


July 30 

I don't know why we're always surprised when there is, yet, another foul up with Bill's insurance. We just got a bill from the hospital where he had his arterial bypass, way back in early May.  It said that his insurance company, United Health Care denied a claim because the procedure was performed by a non-network provider just before the surgery.  He immediately called the hospital to find out why a non-network doctor did something to him at an in-network hospital, under the direction of his in-network doctor.  The staff at the business office of the hospital they never heard of the doctor who is named on the bill.  That doctor is also not listed in the phone book.  Where do we go from here?

 August 11

 It's been a  very good summer. Bill has continuing pain in his leg, and he has been trying to get an appointment with Dr. Hansen, his surgeon.  Other than that, we've been getting out for walks and keeping busy.  He had his PET and MRI on August 3 and we went to San Francisco to see Dr. Minor on the 8th.  All results are clean.  Great news for the third time.

 August 14

 Bill has been calling his surgeon's office since August 1, and has left three messages for a call back to make an appointment for a three month follow up.  Suddenly, on Monday, I noticed that the incision area on the outside of his leg is bulging when he stands up. 






He needs to be seen soon to find out if it is something serious.  He called the office again, yesterday, and she said she hadn't gotten the messages.  No apology.  She said she will set up some tests at St. Mary's and will call to let Bill know when that will be.  She had all day yesterday to get that done, but we didn't get a call.  I guess we will have to call back today. 

 August 17

 Bill finally got through to the doctor's office, and they scheduled him for an ultrasound of his leg.  The ultrasound took just over an hour, and the technician checked both legs.  He called in another technician to consult with him, and they batted around words like, occluded, collateral, retrograde and occipital.  He was concerned about lack of circulation in Bill's ankle. He didn't even mention the bulge, but we're seeing Dr. Hansen on Tuesday, so we'll see if that is something to worry about, too.  We're guessing this means there will be some more surgery to open the occlusion. If so, we want to get it done as soon as possible, so he will be recovered before we go to Maui in October.

 August 22

 Dr. Hansen said that Bill's leg is doing fine.  The bulge is just the flexing of his muscle and nothing to worry about.  He wants to see Bill again in six months.  We are very happy about that.

September 21

We had a wonderful drive over to San Francisco on Friday.  We home at 5:00 stopped to buy coffee, and once for a stretch, and still got to the hospital at 9:30.  The new bay bridge was open, after eleven years of construction, and the traffic moved beautifully.  We hope that is the way it will be all the time.  

Dr. Minor was in and out of the room in about four minutes, but I guess when the patient is continuing to be healthy, there is no reason to stay very long.  We set up Bill's scans for late October and the next infusion will be November 8.  We had a good visit with Monique and Brian last night and got on our way home at noon today.  We had rain all the way and the traffic was very heavy in several places like Vacaville, Fairfield and Dixon, but we were making pretty good time until we started seeing the signs saying, "Chains must be carried over the summit."  What?  This is September, just the first day of Autumn.  We figured they were being overly cautious, and the temperature was still in the high 40s as we got to Auburn.  From there, it just kept getting colder and sometime after we passed Blue Canyon, the snow started.  The road was still fine, but the traffic was going at a crawl for a few miles, when all of a sudden, it just stopped.  We were a few miles short of Kingvale, and we sat there, not moving for over an hour.  Finally, we crawled forward about one-tenth of a mile, and we could see an off-ramp ahead.  I persuaded Bill to take it, and we turned left to Donner Pass Road and drove about four miles to the Soda Springs on ramp.  That took about 20 minutes and it felt good to be moving.  Every time we could see the traffic on the freeway, it was at a standstill. As we drove over the freeway,  could see that there were some trucks approaching.  It appeared that they were letting just a few vehicles through at a time.  If we had stayed on the freeway, we would probably still be sitting there in line (it is now 7:55, and we've been home for about one hour.)  Instead, we made it home in just under seven hours when it should have taken four hours.  We will be sure to have our chains with us for the November trip, and we will remember the wonderful detour, so maybe we will be able to get by not even having to use the chains.  It's amazing how the traffic backs up for miles and takes hours to get going just because of one inch of snow on the road.

 November 

 The trip to Maui was wonderful.  I wrote all about it in the Maui blog.

 November 23

 We've been trying to get out of the house when the days warm up enough.  We've done a little bit of geocaching, but, mostly, we've been hibernating, reading, and watching the TV shows that we DVRed while in Maui.  I went for a walk with Veronica a few days ago, and she gave me several books because they are cleaning out their bookcases.  I introduced her to geocaching and she loved it. We've made a date to take Alan and go out to do some of the challenging ones that we haven't had any luck with. Maybe four heads will prove to be better than two.

 We are going to San Francisco on Friday and we'll stay with Monique and Brian until Sunday. Actually, we've decided to leave Thursday afternoon because of the weather.  We'd rather drive over Donner during the day.  There is no fog to contend with, and if there is snow, it usually doesn't amount to as much as when it is dark.

November 25

We got to Petaluma at 5 on Thursday, and the drive to San Francisco the next morning was good.  We got there so early, that we took a walk down to Post Street, and then back up to Lafayette Park near the hospital.  We found three caches, and got some good exercise walking up those darned hills.  We had a wonderful time at Monique and Brian's.  It was very relaxing.  The drive back to their house after Bill's treatment was not great due to major traffic on the 101, but we got off the freeway and took Novato Blvd to Petaluma. It was longer, but took far less time because we were driving at 55 instead of sitting in stopped traffic.  We took them geocaching and they enjoyed it, but I don't know if they will want to do it by themselves. I hope they will want to go out with us again to do it.  It is such a wonderful way to get out and see things and places you might never have seen.

 One evening, we played Pictionary and the other ones, we watched TV or just talked.  Monique made a delicious chichen dinner and a stew, which tasted great, but didn't cook right.  She had put everything in the crockpot before going to work on Friday morning, and left instructions for Brian not to stir it at all. She had put the meat on the top, right in the middle, in a clump, and all the meat in the middle didn't cook.  We ended up taking it out and sauteing it.  It ended up tasting wonderful  She said she won't make that again. I told her that she should make it, but should stir it to make sure the meat cooks.


November 28

 Bah freakin' humbug.

What started out as a wonderful week, suddenly turned into shit.  Tuesday morning, he mentioned that he had diarrhea and didn't feel very well.  Tuesday night, we had Susie and Kurt over for dinner.  We had a lovely time, and Bill was able to eat dinner and even have a glass of wine.  Tuesday night, around 11 it all started.  Diarrhea, vomiting, chills, and headache.  It was like he was back on the heavy chemo.  We stayed in bed until 5, except for when he needed to be in the bathroom, but neither of us got any sleep.  Finally, I took a shower and got dressed.  Then I fed the dogs, got what I needed for the day, and told him that we weren't going to fool around with it, I was going to take him to the hospital.  At least, by that time, he was so weak that he didn't even protest beyond whining, "Nooo"  

 We got there at 6:15 and went through the usual stuff.  I usually can sit there while the IV is inserted, but after the fifth failed attempt, due to his veins having so much scar tissue, I had to leave. I just can't stand it when they are hurting him so much.  I sat in a nearby room and was able to hear, over and over, "sorry, Bill."  Finally, ten minutes later, it was done, so I went back in.  As soon as they started the fluids they gave him a dose of Dilaudid, and he said, "Oooh, what did you do?  I feel so warm." They took him for a CT, which was scheduled for the health center across the street, but this was to see his intestines, to check for colitis. The results were good.  I had them call Dr, Minor to tell him what was going on, and to find out what he wanted to do.  He had them write a prescription for Asacol, which is what he took the last time for colitis. After two bags of fluids, and seven hours, he felt quite a bit better, although still very weak, and the headache was not much better, so they released him.  

 He went right to bed when we got home, after having his new meds. He slept until I woke him at six, and we went to bed at seven.  We both slept well, except for his trips to the bathroom.  I had high hopes for this morning.  I got him up at seven so he could have some coffee and food, hoping that would help his headache.  They didn't.  It is ten am, and he has just gone back to bed.  He won't eat anything saying that his stomach is still upset. I'm so afraid he will just end up back in the hospital.  Happy Thanksgiving to us.


December 3


Thanksgiving Day was just another day for me. Bill's colitis symptoms  returned with a vengeance. Thanksgiving morning, at 10:45, I was sitting in the sunroom when Mackie started getting all upset, jumping around, and running back and forth between the hallway and me.  I ran into the bedroom to find Bill standing in the bathroom, knocking on the wall.  He said he had been calling me.  He wanted me to take him to the hospital.  He felt worse than he had on Wednesday morning.  I called Dr. Minors office, and talked to Dr. Wang, the on-call doctor, who said to take him to the ER and have them call him.  He wanted Bill to be admitted and given steroids to get him back on track. 


He had to wait until 4:00, but he was finally taken up to a room.  I stayed with him for a few minutes, then left so he could get some sleep because he was finally comfortable.  I went to Kathy and Rommie's and had a plate of food and some dessert, and then I went to Susie and Kurt's just to visit because I didn't want to go home, yet.  I got home at about 7:30.

When I walked into Bill's room in the morning, I was so happy to see him sitting up watching TV.  He felt 95% better.  It is so amazing how quickly he gets sick and then how quickly he recovers.  He had to stay in the hospital until Saturday morning, but he felt fine.  We took several walks.  We ran into Casey, the floor supervisor, who we met in San Francisco when her mother-in-law was on Interlukin at the same time as Bill.  We had a long talk and it was really good to catch up on all the news about her family, especially her son, Ryan, who I worked with a couple of years ago at Best Buy.

 Bill came home at 11:00 on Saturday, and today, Tuesday, he is still doing great. 

 Dec 16

 After several days of being fine except for being tired, Bill landed back in the hospital this morning. Last night, we had a great time at our good friends, Susie and Kurt's with several friends, playing games and eating.  Bill didn't eat very much but he enjoyed what he had.  We got to bed at 9:30 and I heard him get up for the first time at a little before 11.  He was having the terrible chills along with the other symptoms, but at around 11:30, the diarrhea was bloody and he was vomiting .  We went right to the hospital.  It was a very bad few hours and he was admitted at 4:00.  By that time, he had been given Dilaudid and anti-nausea medicine, so he was finally comfortable.  They have him on two kinds of antibiotics,  The x-rays show that his intestines are not perforated, as we had feared.  They are just very irritated. I will find out in a little while what else they are going to do for him.


Dec 22


Bill was alright once he was admitted to the hospital and given some meds.  He was up and around on the 17th, and was able to come home on the 18th.  He is very tired all the time, but we think that because his hydro-cortosone was increased to 50 mg in the morning and 50 mg at night, going back to 10 in the morning and 5 at night should have been done more gradually.  I'm going to call Dr. Minor tomorrow, but Bill took an extra 10 mg this morning to try to perk up a little bit.  We will be going to San Francisco on the 27th to see Dr. Minor.


Dec 28


In  a nutshell - Bill has been cancer-free for 18 months and in remission for 10 months. We don't know the difference between "cancer-free" and "in remission," but that isn't important. Although he will still have regular scans and see Dr. Minor often, as of 12:34 pm, yesterday - no more Yervoy!!!!! His body can relax and let itself heal, knowing that it won't be subjected to any more poison. We are looking forward to a healthy 2014.
 












 
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