Wednesday, October 22, 2014

Chemo update

The only words that come to mind are urppy, icky, and shitty.  There are many side effects to the 3  chemo drugs I am taking, and several wandered through my body the past week.  I will not identify the side effects (SE from now on).  I don't want anyone borrowing trouble, they will have enough on their own.

It has been ugly but I feel a little better today.  The  big problem is we are afraid things will strike while in the car, standing in line at the lab, anywhere but our home.  Sleep is my friend, if asleep I don't suffer the nausea and other SE.  But the SE will get me out of bed quickly.

I am a little afraid to stay alone now. Cleaning up me and the bathroom is no small task.  And two attacks I could only stand there while I was helped.   Marty has done things that had never crossed our minds I would need.   Not in the wedding vows to hose off your spouse or to shop in the embarrassing part of the drug store.  Not in the marriage vows to dress me and then have to do it all over again in 15 minutes. 

Yesterday friend Kirsten sat with me while Marty was at a meeting. She had agreed to this before this latest SE had hit. I must say she is a wonderful friend.  She cleaned me up, washed the floor and everything I had destroyed, and spot cleaned the carpet.  Then she gathered up cleaning rags, my night shirt and other towels.  Those she took home to launder for me.  If you haven't been there you have no idea what a huge deal this was.  Love you Kirsten.

I know I am getting better.  I had a frozen Milky Way. 

Thanks to all of our friends and new friends with your prayers, cards and likes/comments on Facebook.  I have been blessed with a worldwide support network.  I feel overwhelmed.  Love to you all,



Saturday, October 18, 2014

Joe is here to share some wedding news

Tears & Kisses

News of Janet's diagnosis hit me pretty hard.  She asked me to keep blogging about weddings, and I immediately promised to do so.  Then things got kind of boring at the Marriage Factory.  The best I can offer you is a few tales of tears and kissing.

The bride & groom have a Spanish wedding.  Both speak English but the family doesn't, including the bride's father.  The ceremony is lovely, and the couple are very happy.  Dad is also happy.  He is an older man, dressed in traditional western gear, and tears are running down his face.  His daughter explains that he is thrilled to see her married.

My next couple are women.  They also cry, very happy to finally be married, even though they are younger than me.  They were also very passionate.  I've seen many post-wedding kisses before, ranging from a dry peck on the cheek to the borderline pornographic.  These ladies - they knew how to kiss.  Quite beautiful.

I married several same-sex couples that week.  None were matchy-matchy.  Better luck to me next time.  Get better soon, Janet.

Joe Mallon

Thursday, October 16, 2014

Chemo Day, not bad, yet awful

The process of being given the chemo is not terrible.  You sit in a recliner and they keep hooking up different bags of fluids and medicines over a 5 hour period.  Before that they gave me a huge amount of nausea medicine.  I had two chemo cocktails at the hospital and they started  my take home one.  It is hooked into the port in my shoulder.  There is a little grenade shaped ball that hangs down and sends the medicine into me. 

I told them I can't sit long without ice for the back pain.  So they gave me some ice packs, but not often.  So the back was a big problem.  The reason they couldn't put ice on me is a side effect of one of the many chemo medications.  I will be very sensitive to cold.  Ice on my back will cause the muscles to cramp.  I am not to drink anything that is cold or has ice in it.  My throat will have spasms and I could choke.  I  must wear gloves because any metal will feel so cold it would feel like a burn.  Even taking something out of the refrigerator could cause a problem.

When I got home I was tired just being up so long and hurting.  I napped and then it was supper time. UGH!  The smell was awful.  The very same home made soup Marty had made for me and I had loved the night before.  I was so nauseated.   I made myself eat the broth and skipped the noodles and chicken. 

I was very upset last night, I didn't expect to be tired and nauseated so soon.  Maybe it was just me, maybe the chemo.  Whatever it is I walked around the apartment carrying a wastebasket with a plastic liner in it. And I will continue that for a long time I am sure. I have a barf bag in my purse, just in case.

I don't feel very funny today.  I feel teary and sad.  I want to waller in the unfairness of this.  I want to kick and scream.  I will pull it together.  But Marty and today's chauffer Kirsten said I am allowed to absorb all that is happening and just feel it.  Maybe tomorrow I will be perkier.


Sunday, October 12, 2014

Medical Marijuana Card, nothing is easy

My oncologist suggested I get a medical marijuana card before I start chemo.  There are benefits such as helping with pain, nausea, insomnia.  Certain plants are bred to help with chronic pain and nausea.  You might be a little sleepy, but no high. 

Today we started searching for a dispensary close to us and one that delivers.  Googled San Leandro, got the address, and set the GPS.  Well, that one didn't work out.  It was just a house in a nice subdivision.  We called the number, no longer connected.  So we spread out to the next town, Hayward.

The place was a nightmare.  Rude and ignorant bitch at the front desk.  We had called there and nothing was said about getting a card elsewhere.  All she could say was her script about primary care doctor writing a letter of recommendation for a screening doctor. I have been turned over to an oncologist and won't be seeing my primary care doctor.  She didn't seem to know what an oncologist is.   We asked for a screening doctor, she kept saying the same thing over and over.  They don't give out the cards, only the selected few doctors.  Finally she gave Marty a phone number to call, and they would help us.

He called, they answered the phone:  Doctor's Office.  The receptionist gave us an address in Oakland and we headed north.  We arrived, the building has an "open" sign out front, suite #, but was locked up tight as a drum.  Bless cell phones, Marty called and she was all surprised and came down to let us in.  I filled out paper work, explained my diagnosis, and Marty gave her $85 in cash.   Now I could see the screening doctor.

We went into a room that had a desk with empty drawers standing open, one chair, nothing on the walls, and a laptop set on SKYPE.  I blurted out, " Are you kidding  me?  The doctor isn't even here?" " Oh this is  modern technology, she said."  We could only see the MAN'S face from about the eyes up.  He asked why I wanted the card, right he wasn't even there.  He lives in Los Angeles.  So he had not seen their stupid information sheet.  I explained again, and he basically said OK you can get your card

I then lost it and asked how do we even know he is a doctor.  And that we have no idea what he looked like.  He moved the camera a little and then went back to the incognito mode.  Talk about a stupid system.  Only certain doctors can give you a card, and it seems as if they are working the system for the money.  Trust me, little medical info was going either direction. He took my word that I had cancer.   I felt dirty and as if I were doing something illegal.  And for people not in California, this a legal medical business.  It should  not be so hard and upsetting for the patient. 

At this point I just wanted to go home and cry and take a nap.  Marty pushed and said we needed to do this, and let's get it done now.  So he found a dispensary in Oakland and off we went.  This is where it got better.

All of the dispensaries have tight security.  Security in Hayward made us feel like criminals, they glared and made us feel as if we were going to rob them.  The Oakland one had a lot of security and they welcomed us, opened the door, and smiled.  The inside security watched us, that is their  job, but not in a mean way.  The staff did my paper work, and sent me into the secure room with all the stuff.  (Only people with a card can go into the secure dispensary area.  Marty had to go back outside)  Security showed me to a seat and said I will call you. 

A lovely young woman explained what type of medical marijuana might help me.  She listened to me and knew I didn't want a high, I wanted help with pain and nausea.  She checked with someone about the marijuana and other drugs I am on.  Then she said Marty should have a caregiver's card.  Then he can buy what I need when I am too sick to come myself.  She gave me info on setting that up.  She explained their other programs, massages, free haircuts, nurses to give advice, and on and on.  A cheerful place.  A place that was compassionate.  

And no, Kaiser and Medicare do not pay anything toward the marijuana.  We will see if the US will let us take it off our taxes.

Friday, October 10, 2014

Biopsy Report

My oncologist just called with the biopsy report.  There are no surprises, it is cancer.  She told me what type, and it did not register in my brain.  It is the most common type and I am sure I will get a written report in the next week or so.

So now we have a real game plan.  Monday I will have the port put in.  Tuesday they will set up my chemo sessions.  I will receive two types of chemo at the infusion clinic.   I  will then receive a portion of one that will be slowly released over several days at home.  Then repeat.  This is the broad picture.  I will get more details later.  The first round will be for 6 weeks.  Each visit takes around a half a day. 

The plan is to stop the cancer and to hopefully shrink the mass.  Again odds are not great, but gonna try what is out there to fight with.  This may or may not make me sick.  A few people don't have much trouble with this type of chemo, but most do.  She is upping my nausea medicine and pain medicine.  After the port implant Monday, I can try different forms of marijuana. 

Please keep me and Marty on your prayer list. 

Thursday, October 9, 2014

Doom and gloom, and then you make jokes?

It has come to my attention that there is confusion caused by my health posts.  I tell you all how sick I am, the runs to the ER, tests, being scared and on and on.  And then I make jokes about it, or just write how normal an ER run is for us.  Some people think I haven't been very sick the last year if I am able to joke.  Others think I am too negative about my chances.  They don't want to hear about death.  Some think if I say how low the chance of survival is, I have given up.  So let me clarify the mud.

I HAVE NOT GIVEN UP!

I handle the awful things in my life by laughing.   I can't be sad all the time. So I have crying jags, and then I laugh about no need to shave my legs anymore.  If I cry all the time I will have no energy for this battle.  I have to recognize the bad odds and help Marty with practical things we have to handle.  I have to suck it up and be a big girl.  I have to keep fighting and keep laughing.  I do believe a little bit in miracles.  The Pet Scan was way better than we were braced for.  Prayers helped that one I am sure.

Trust me, I have been very sick for over a year and will be sicker.  I write about my health to help  me vent.  A friend told me it was important that I shared, now she knows how to pray for me.  I also write hoping maybe I will help some one else who is sick.  Maybe they can see some of  my issues are fixable and theirs might be also.   Maybe they will try prayer.  Maybe I can give them comfort and they will see they are not alone.  Maybe they will just get a laugh from the weird woman writing this.

Everyone handles illness differently.  Most people are much more private than I am.  They need to keep it all close. That is perfect for them, that is how they keep their sanity.  Anything that helps the sick person and their loved ones is perfect.  Crying, anger, laughing, hugs, prayers, venting, holding it close it is their choice for making it through the crap of illness.

Listen to and watch your friends.  Accept their ways to handle tragedy. 

Tuesday, October 7, 2014

A Team Brunch

The A Team is a group of friends who have become family.  We were neighbors and realized we all loved food, we loved to cook, we loved to be with each other. We get together and eat luscious food. We have highly planned pot lucks.  We also love deep down in our hearts to blow away the others with our cooking magic.  Not that we are competitive or anything.

Saturday we had brunch at our apartment.  Two months ago we said we will host in October.  As you all know, all I have done lately is plan doctor visits.  The brunch happened, it was spectacular, we planned it out and I gave up some of the finer entertaining rules in my head.  We planned our part of the meal to be something that we could prep the night before.  The brunch was all about being together.

Many, many pictures below of the prep and the party.


Marty and I made a Crab and Shrimp Tower with a citrus vinaigrette.  We used the black pipe to shape the tower.


Marty lined the pipe with foil and then layered the food.  Then the pipe was lifted off and the foil supported the tower until it was served.


Hank setting out the appetizers.  We had stinky French cheese, soft French cheese, wonderful charcuterie, and meat balls, 


Hank and Thom went all out.  We also had deviled eggs, veggies and dips, and mozzarella, basil and cherry tomatoes on a skewer.  I think they were afraid I would be too tired to prepare a main course.


We call this our Boudoir Dining Room.  The bedroom is huge and the only place to set up a table for 6 or more people.  


This is a long shot of the table.


The tower shot from the top.  I should have done a side shot.  The tower was lettuce, heirloom cherry tomatoes, shrimp, dungeness crab, carrots, and a crab claw.  We poured the vinaigrette around the tower.  There were sliced mangoes and avocados beside the tower.


The table is ready for our guests.  But first, just one more picture.



Nancy and Lew made an apple crisp for dessert.  The warm crisp was on vanilla ice cream, raisins, other wonderful rich goodness.


The A Team!  From left to right:  Janet, Marty, Nancy, Lew, Hank, and Thom.


Marty and me enjoying a little Bubbly.

The best part of this wonderful meal was I was able to eat.  The nausea pills work, Mr. Morphine worked, and everyone brought rich tasty food that appealed to my out of whack taste buds.  

It was a great day.  We laughed, we cried, we remembered other events.  And we planned the next event in November when our A Team Texas couple will be able to join us.  

Monday, October 6, 2014

Pet Scan update etc.

Last Friday I had a Pet Scan.  In a nut shell this was to see if there is a cancer spread, other problem areas in the body, inflammation anywhere.  After a long weekend, today the oncologist called with good news.  It looks like no spread, and no new trouble.  So some happiness in this mess.  Still an inoperable mass.  But we are only dealing with one problem.

Wednesday I have the biopsy and it will take at least 3 days for results to come.  That would be Monday the 13th. 

Monday the 13th  they put in the port for chemo.  Probably the end of that week I will begin Chemo.  We plan to be aggressive in attacking the mass.  I know that also means I will be icky sick through the chemo.  But we are going for more time. 

Your prayers are helping and I feel the caring from so many people that I have never met.  Thank you, and please keep praying.  You are needed.

Friday, October 3, 2014

Marriage Factory from another Voice

JOE IS BACK!  Tuesday night I asked Joe's wife to see if he would write about the Marriage Factory during all my tests and treatment.  I don't know how long I will be allowed to work with the public (they carry germs).  I want you all to hear the great stories we see all the time.  Below a great blog by Joe.  Thank you Joe.

A Runner's Job is Never Done

Janet has often referred to the Hall of Records as the Marriage Factory.  That's mostly a joke about the way you enter as two people and exit joined as one couple.  Sometimes, though, the analogy is closer than might seem appropriate. A couple weeks ago, I got to the Hall shortly before 9AM on Friday and there was a couple waiting to be married.  From that time until I left at 12:30, the desk was never free of licenses.

The clerks and I asked each other: why today?  There didn't seem to be a numerological reason, no 8/8/08 or 11/12/13.  It was busy because it was busy.  By 10:30, it was time to engage a runner.

When an officiant finishes a wedding, it can take 10-15 minutes to get the next wedding ready: leave the wedding room, wait for an elevator, run to the desk, grab and examine the next license, call and assemble the entire wedding party, wait for another elevator, and get the party into the wedding room.

A runner is a staff member who gathers the paperwork and the wedding party and brings them upstairs to the wedding room.  A good runner can do all that while another wedding is happening, saving enough time to squeeze in an extra ceremony per hour.

From 10:30 to 12:30, my runner was bringing up a new couple + guests every 7-10 minutes.  I'd finish a ceremony and meet the couple in the waiting room.  They reviewed the license while the previous couple waited for their certificate and took pictures.  Once the new couple were ready, on we went with the wedding.  Repeat as necessary.  When the dust settled, we'd done 20 ceremonies in 3 1/2 hours.

Noted among them:
Not 1, not 2, but 3 male same-sex couples who dressed alike (or at least very similarly) to get married.  In 2 of the cases, the only way to tell the outfits apart was by the tie. That kind of synchronization is very unusual in other weddings.  Sure, there's color co-ordination - the groom's pocket square matches the bride's slip color - but the twinsies look seems exclusive to the male-male couples.

After a particularly joyous opposite-sex wedding, the guests formed a prayer circle.  Though I am not permitted to join any form of worship, the worship itself is certainly allowed. This one was serious, with praising and "Amen"s bouncing off the walls.  There was also talk of the wife's duty to surrender to her husband, as adherents surrender to the church. Not how I feel, but the couple seemed fine with it.  I hope their faith and joy last throughout their marriage, although I wouldn't press too hard on the "obey" part if I were him.


--
Joe Mallon
********************************************************************************
Notice Joe did 20 weddings.  I have done that in healthier days, but not often.  That is pretty much what Joe does most Fridays.  The fastest commissioner around.  He is fast, but he also never makes the couple feel rushed.  We are so lucky to have him.

Wednesday, October 1, 2014

Bad Health News

In the past 6 weeks I have had constant back/rib, nausea pain, unwanted weight loss.  Tests have been run and the results suck.  I have a mass on my pancreas.  They can not operate because it is wrapped around blood vessels.  Right now I am going through some yucky tests to determine the spread, if cancer, what type. There is very little hope with pancreatic cancer.

Kaiser has been great.  They are getting all the information needed to help me through this and to keep me comfortable.  I am on nausea medication and Mr. Morphine for pain.  I also will be taking a marijuana drug to help my appetite.  Soon I will go to my local dispensary and get a medical marijuana card.  No standing on the street corner in California looking to score.  The marijuana will help with nausea, lack of appetite.  We can buy oils, cookies, make brownies, what ever I need to be comfortable.

Marty and I need prayers.  This is bad for the patient and for the caregiver.  Please share this blog with everyone.  Prayer works, and all religions welcome.

My close friends are circling the wagons.  They have already started driving me for blood work, to book group, etc.  Because of the morphine I can no longer drive.  Also Mr. Morphine makes me just a little slow reacting.  Brain thinks it and mouth goes Whaaaat?  I noticed I type and whole words are left out.

I will post as able.  I am begging Joe to post about weddings.  Not sure if I can keep marrying if in chemo.  When in chemo, they sometimes restrict contact with people. We are living day to day.  

There are a few upsides.  The only foods I am able to eat in a real size servings are lobster and filet mignon.  Marty is suspicious, lobster? Also if we do chemo, no longer shaving my legs.  We also will save money on hair cuts.

Yes, I will go down cracking awful jokes.  In my family you have to laugh to stand life.