Thursday, March 1, 2012

Lots of catching up to do

It has been a while.  Let's go back to February 18.  It was the Worthy Grand Matron's Official Visit.  I was not feeling good.  In spite of 10 days of antibiotics the beginning of the month, and another course started the previous Tuesday, my legs were not doing well.  They were burning up and peeling.  On Tuesday, Dr. Chee said if they didn't get better, I'd need to get IV antibiotics in the hospital.  I kept my legs elevated as much as I could and left shortly after the meeting was over.  I called Dr. Chee's office and left a message.  The on call doctor  changed my antibiotic.  I saw Dr. Chee on the 21st.  She said for me to get to the hospital.  Since we'd waited this long, I figured a few more hours wouldn't hurt.  It was band practice, after all, and the Ceili is coming up.  And we only had an hour to practice.
I packed up all my toys, Glenn and I went to practice, and then he took me to emergency.  We got there about 7:10.  It was very crowded.  It would have been so easy just to get admitted, but it doesn't work like that.  It was about 10:30 when we were finally taken to a room in emergency.  After the hospitalist heard my little song and dance, he outlined the redness on each leg and agreed to admit me and started me on antibiotics.  I sent Glenn home then--trusting him with my car and my violin.  I think I made it to a room on the ward around 1:30 Wednesday morning.  God bless them, they brought me a turkey sandwich, so starvation was averted.  My legs hurt--I expected them to burst into flames.  I got to sleep somewhere around 4.  I woke up around 9 when food services called to see if I wanted breakfast--they think they are a hotel and have instituted Room Service where you order your meals whenever you want them.  The nurses don't care for it very much--I didn't either.  Someone talked me into a pneumonia shot.  Her technique wasn't the best in the world, but at least the pain in my arm took my mind off the pain in my legs and the usual pain in my abdomen,  It still hurts a little, more than a week later.  They sent me home on Sunday, the 26th, with a week's worth of IV antibiotics left to take and Visiting Nurses coming on Monday to teach us how to infuse me.
I've had Visiting Nurses a couple of times, so I know how they work.  The pharmacy delivered my meds and supplies on Sunday night.  I expected to hear from the Nurse Monday morning with a time they would be out.  Nine to ten, no call.  At 10:30, I called, was connected to the scheduler and left a voice mail.  No call back by 11, I called them again.  I told the receptionist that I was supposed to get the antibiotic around 1:30.  She went off to find the scheduler--who was on the phone, but world call me right back.  This time, she did--and told me that the nurse would call and let me know when she would be here.  I almost said, "Aren't you the scheduler?  Don't you know?" but thought better of it.  The nurse called in five or ten minutes and admitted that they had forgotten about me.  Not to worry, she was in Pacifica and would be here in about fifteen minutes.  She was.  Things have been fine since then.  Until today. 
I woke up around 5, with pain in my upper chest, difficulty taking a deep breath, and pressure.  Naturally, I thought it would go away, and went back to sleep.  Woke up again around 7:30, still in pain.  I had breakfast, still hurting, and considered my options.  i finally called the Visiting Nurses, who suggested I check with my oncologist's office.  I called them and spoke with the nurse practitioner, who said it needed to be evaluated.  Go to Peninsula emergency.  Do not pass go, do not collect $200.  I called Dory to see if she could take me--yes, of course.  Once again, I got my toys together, left a message for Glenn, and waited for Dory.  Once at emergency, I said the magic words, "chest pains," and was whisked into a room.  Of course, there was no one in the waiting room this time.  We were there till about 3:30, during which time they determined I did not have a heart attack and I did not have a blood clot.  I did have an EKG, chest x-ray, CT scan, and many blood tests.  I'm still uncomfortable, but I'm home.  I have a doctor appointment for Monday.  Tuesday I'll start chemo again.  Dr. Chee didn't want to be whacking at my bone marrow until the infection in my legs was under control.  It did throw off my schedule a bit.  I should have had chemo on the 28th and the 6th.  That way, the Ceili would be at the end of a chemo-free week.  Guess I'll have to rely on adrenaline getting me through.
That's it, you are now up to date.
xxooxx

Thursday, February 16, 2012

John's Funeral

It was so warm and cozy in my bed, under the duvet.  I just wanted to stay there.  Glenn is in his room, swearing mightily at a basketball game--I'm temped to remind him that it's just a game, but I've been telling him that for 34 years and it hasn't sunk in yet.  Secretly, it makes me smile.
It isn't my son that got me out from under the covers.  There are so many thoughts, rumbling around in my head, and they need to come out.
I got up very early, for me, today. Ate my breakfast, washed my hair, put on real clothes (that would be nylons, a dress, and heels as opposed to sweats), filled my tank--well, my car's tank--and headed south for the San Jose Masonic Center and John Fletcher's funeral.  I didn't get as early a start as I wanted, but God was looking after me.  The traffic was very light and the drive down was beautiful.  I got there about half an hour before it was due to start and squeezed into the last sort of parking space.  People were pouring in, many of whom I recognized, many I didn't.  When I got into the lodge room, the red room, the sidelines were already full.  Bless her heart, Lynn Gentry popped up and gave me her seat nest to her mother.
I am so proud to be a member of the Eastern Star and a part of the Masonic Family.  There were people from all over the state there.  Everyone loved John.  And for some reason, many of them also love me.  I don't get out to much that isn't connected to a doctor appointment, especially not two days after chemo.  But I had to join my Sisters and Brothers to say good bye to this fine gentleman.  People were pleased to see me, told me how good I look.  I've never really looked sick, even the first year with no hair.
The people kept coming in and the men kept adding chairs.  Don Snyder was playing the piano.  It was finally time for the Masons to come in.  Loyal Stark conducted the service, Ken Negel was the Chaplain, and Dave Skipworth was the Marshal.  They looked regal.  And the Masons.  They just kept coming.  We had lots of Masons at Lee's service, but nothing like this.  The service was beautiful.  The room was filled with love.  I was tired, but it was worth the effort.  I stayed at the Center while many went to the interment, chatting with friends, drinking lemonade, and eating cookies.  I had a chance to give Karen a hug before I left.  It was a long drive home, but once again, the traffic was light and the day was still lovely.  I was very happy to see my freeway exit.  I took a long nap, got up, had something to eat, watched the end of Fiddler on the Roof, and crawled under the duvet--and that's where we came in.  There are still thoughts rumbling around in my head.  Some of them have made it onto this blog.  I didn't expect to outlive you, john Fletcher.  Rest in peace.
xxooxx

Tuesday, February 14, 2012

Chemo 5.2B

It has been a full day, but not as full as it could have been, thank you, St. Valentine.  I started the day with a trip downtown to see Mark, then a visit to Patelco's new digs, a stop at the market for cereal, milk, and juice--and a few other things--a quick bite of something for lunch, then off to CA Cancer Care with Glenn for my weekly poison.  My legs have been bothering me, so I called yesterday to have them looked at when I was there for chemo.  Naturally it couldn't all be done at the same time, so it just dragged out the appointment.  Cellulitis is back and I now have three weeks worth of antibiotics--with the admonition that if it doesn't get better I might get to visit the nice people at Peninsula Hospital for IV antibiotics.  Get better, I don't have time for a hospital visit till after the Ceili.
Got my chemo, which was at the correct speed this time, and a procrit shot, since my red count was under 10.  I got home to a voice mail message that the guys in the band were taking their wives out for Valentine's day, so we scratched practice.  Much as I love band practice, I'm so tired today that I said, "Yippee--have a collective wonderful time--see you all next week.
Somehow, Chemo 5.2A missed the blogosphere.  I had it with no bad side effects--red count was 10, so no procrit.  Spent the week knitting.  I picked up a sweater that I started last year.  It is very close to finished, but I ran out of yarn (yes, that is possible) so I had to order more.  Hope the dye lot isn't too far off, because I have no choice in the matter.  Now I'm excited about the possibility of finishing the sweater--for me!  I have another that I started last year--almost finished, ran out of yarn, yada, yada, yada--anyway, I'll finish that one after I finish the other one.  Then I will feel twice as accomplished.
That's my news.
xxooxx

Monday, February 6, 2012

Sonoma again

Last week was my chemo free week, so I took advantage of it.  Tuesday was a full day, starting with a trip downtown for Mark then home for cancer followup appointment--red count was 10, so no Procrit shot. 
Wednesday morning, I threw my stuff together--way more stuff than I needed, but one must be prepared.  I left for Sonoma around 1, had no traffic at all, and got to the Inn between 2:30 and 3.  I checked in, went to the Big 3 for lunch, then to the spa to begin my half week of pampering.  It was strange to have no Soledad.  I somehow managed to soldier on.  First treatment was a tandem massage--utterly sinful--with Diane and Lani.  That was followed by a Wine Country Recovery with Diane.  Not exactly that I had anything to recover from, but it was a great way to start.  I brought Ally with me this trip.  We came separately, so I was glad to meet up with her in the room.  You just need to know that your chickadees travel safely.  We went to dinner at the Big 3.  It was live entertainment night--which we could have gotten along without.  They weren't very good.  But they were very loud.
Thursday was a full day.  I started with a Watsu with Glenn then I did the bathing ritual.  The afternoon was Reiki with reflexology and a Rejuvenating Kur with Diane.  Diane is my own personal CT scan.  I still don't know how she does it, but she knows what's going on with my body.  Ally also had Reiki with reflexology with Diane and a Tandem Massage.  She loved it.  We went to the Black Bear Diner for dinner.  It was the first time since I went with my niece--my first trip to the Inn in 2004 or 2005--that I had a meal off the property.  Ally drove.
Friday started with a Watsu with Laura.  Next was a Wild Berry and Chocolate scrub with Samantha (I smelled yummy), lunch of Spinach Salad with chicken, and a Relaxation Massage with Laura.  Ally had her Facial on Friday.  She went out with a friend from Santa Rosa that night, which was fine.  I had dinner at the Big 3--no band.
Saturday started with a Willow Stream Elements with Bill--pretty much the new name for the Moor Mud Kur.  Not at all glamorous--at one point you could audition for the Tar Baby--but your skin feels sooooooooooooo good.  Another Watsu with Laura, lunch, and a Facial with Julie.  I treated Ally to a Watsu as a late birthday present.  She couldn't afford it, but Carlson's law says that no one can go to the hotel without having a Watsu.  She loved it--of course.  Glenn says it isn't for everyone, but I'm not sure I want to know those people.  We went to the Black Bear again for dinner.
Sunday was go home day, which is always a little rushed.  Get up, pack, call the bellman to store the luggage while at the spa, rush through breakfast to get to the spa on time.  The last day is pretty day--at least that's my schedule.  I spent the morning and the early part of the afternoon in the salon with Rodolfo--toes, fingers, and hair and scalp revitalizer.  That way, the toes and fingers are completely dry before I get dressed to go home.  Ally had a spa day with a friend then went wine tasting.  She'll be home today or tomorrow.
I got home for most of the Super Bowl, though I did sleep through part of the second half.  I feel pretty, my skin is soft and smooth, I was royally pampered, and I can't wait to go back.  Not sure when--maybe for my birthday, certainly for my anniversary.  Until then, it's back to reality and chemo tomorrow.
xxooxx

Tuesday, January 24, 2012

Chemo 5.1B--long day

It was not a happy week.  I spent most of it in my jammies.  I started to feel better by Friday.  The major excitement of Saturday was losing a crown.  Well, I didn't exactly lose it, it just came off the tooth.  I saved the crown.  Sunday was sad.  The 49ers came so close to winning.  At least they have never lost a Super Bowl.  There is always a bright side to everything.
So today.  Got up around 8 and had breakfast.  Went back to bed and listened to NPR till it turned off at 10.  Ally and I went grocery shopping.  I was very grateful to have her muscle power to get the groceries upstairs.  Noon was the dentist to have the crown reseated.  Janis came at 2 to take me to chemo.  Platelets just barely made it.  Red count was 8.4.  The Procrit hasn't kicked in yet, so I have an appointment for a transfusion on Thursday.  That will work out.  My hair appointment is on Friday, and the extra blood will give me the energy to walk from BART to Union Square.  I'm not planning on feeling super this week, but I'll get through it.
I had time for a little rest after chemo.  6:30 brought the first band practice of the year.  We read through most of our tunes.  Next practice is next week.  I was pooped, but band practice always pumps me up, no matter how bad I feel.  Yay Ceili!
Now I'm ready to rest.  I turned in two hats today.  Janis would like one, so she gets the one I'll finish tomorrow.  If I feel up to it, I can go to Koffee Klatch in the morning--if not, I can snuggle under the duvet.  That's it for now.  A long day for me.
xxooxx

Tuesday, January 17, 2012

Chemo 5.1A

I am now on Gemcitabine, trade name, Gemzar (easier to pronounce and remember).  I started the day with a trip downtown to see Mark, my therapist.  Time with Mark always makes the day better.  Winter has finally come to Northern California.  The air was crisp.  I wore thermals, a hat and gloves, and was pretty comfortable.
Vicki was the Minion of the day.  It was good to see her.  She is the one who gave her mother and me our birthday party last year.  I don't think I've seen her since then, but always see her on Facebook, so it's sort of hard to remember.  It was a really quick appointment.  I had labs done yesterday, so they didn't need to check that.  Red count was 9.5, so the Procrit seems to be doing its job.  Bad thing about Procrit is that they can't give it to me through my port.  The shot hurts.  The visit started with pre meds, then 2000 cc's of Gemzar--looks like it should take forever to infuse, but it goes in really fast--you can almost hear it going "Glug, glug, glug..."  The flush the port after the chemo is through glugging.  My platelets aren't bad, but I did try to exsanguinate when they took out the needle--always exciting.  Last comes the Procrit shot in the tummy, "see you next week," a visit to the bakery for petit fours, and then home for a nap.  I'm feeling a little nauseous and tired, but no pain.  We'll see what tomorrow brings.  The only thing on the schedule is a hair cut--postponed twice, once because I didn't have the energy and last week because my stylist's father died.  My hair is still thinning on top.  Back and sides are pretty full.  I think it will enjoy the attention of a cut and style.
I got a surprise when Vicki came to pick me up.  There was a package for me.  It was a quilt from the woman in Connecticut for whom I made wool mittens in December.  She loves her mittens.  I love the quilt.  A happy match.
xxooxx

Friday, January 13, 2012

Expensive Day

Sibling warning---Gretchen don't read this if you are going to yell at me!
I got up at six this morning to have my breakfast.  Went back to sleep for two hours, took a quick shower, then headed off to Mills Hospital for my CT scan.  I must have been really zoning out, because I missed the turn off and had to go to the next one and drive around Robinson Crusoe's barn to get to the hospital.  They greeted me warmly with my quart of contrast to drink.  Yum.  I tried to be neighborly and offer some to the other people in the waiting room, but that didn't work.  They found a vein on the first try for the IV contrast.  Since I was in San Mateo, I decided that if there was a parking place around 9 Rubies, then God wanted me to go there.  What do you know?  A parking place right in front!  I have a monster in my house that lives on #6 needles.  I thought it would be safe to buy needles.  They didn't have any #6 straight needles at all--so i had to get baby yarn and buttons to replenish the stash.
Came home, watched the last episode of One Life to Live--really done well and left me with a good, if sad, feeling.  It was really annoying to watch commercials for the replacement show.  I'm not going to watch it.  Since I still needed #6 needles, I went to Cottage Yarns and got two sets of each length.  And since I was there, I got more hat yarn--I put hats in the bin at the Cancer Center when I go in for chemo and they are gone before I'm done with my infusion.  Also got baby yarn and buttons for the stash, you know.  Stopped at the bank and deposited money then headed home.  I closed the garage door and sent upstairs.  When I got to the landing I heard an unpleasant noise.  Went back downstairs.  The garage door was closed, but I had a bad feeling.  Glenn got home a bit later and couldn't get the door to open more than an inch or two.  Oops.  Let my fingers do the walking and called a garage door repair company, who would have someone out between five and seven.  Finally took my nap.
Mr. Garage Door Repairman arrived just before seven,  The diagnosis was a broken spring.  Ended up replacing the spring and the rollers, which were just about dead.  It cost a pretty penny.  I have a five year warranty on it--hope I outlast it.
While waiting for Mr. GDR, before my nap, I got a call from my oncologist--you can start reading now, Gretchen.  The current chemo isn't working.  The troublesome lymph nodes are a little larger.  So I start a new chemo on Tuesday.  It has the same schedule, days one and eight, chemo, day 15 doctor follow-up, out of a 21 day cycle.  Once again, the upshot is that I'll be there once a week for the next several months.  Of course I have to be there for the weekly procrit shot.  So, I have a new set of side effects to learn.
So that's it.  Not really happy, but resigned.  Looking forward to chemo 5.1A.
xxooxx