Home Again

My last post had me in the hospital with the beautiful caring people at Kaiser's San Leandro hospital.  On Wednesday before Thanksgiving we decided coming home would be best for me.  No further chemo would help me and my oncologist Dr. Kuan told us home would be best.  We talked to Patti the social worker and she told us about the care we could get from Hospice. 

Our next thought was how we could maneuver the 26 steps into our apartment.  Gurneys would be too big and bulky to work.  I figured I would have two studly good looking men carry me up.  No, in fact two beautiful petite young women showed up.  They were strong as an ox.  We arrived at home and we waited for a handsome man to bring a special gurney chair.  They carried me upstairs backwards.  It was a wild ride.

After settling in I was transferred from Kaiser to Hospice.  Hospice came later in the day to make an assessment and go over procedures they would use.  4 days a week someone from Hospice will be here for about an hour to go over what has transpired from their last visit, bathe me and help with light housework.  The next two days we spent rearranging the apartment to accommodate a bed for me and other equipment.  Our son Erik helped with moving things around too.  On Saturday they delivered my bed.  The bed is electric and my brother and Marty bought rich red sheets to cheer me up.  Red matched other furnishings in the room that are red.

Every day my legs are stronger but  I am still very weak.  I'm trying not to be cranky but seems like everything upsets me.  Then I am  mean and feel like a bitch.  I am eating more day by day as I get further away from my last chemo treatment.  Little brother Hank and his wonderful wife nurse Ann have been a godsend to us.  They have taken care of me and helped us cook, wash dishes and clean the apartment.  When they leave it is going to really get hard.

Posts will be more irregular because we are overwhelmed with this change in our lives.  We want you to be informed about my condition but just check Facebook and my blog because it is difficult to keep up with all of the phone calls and texts.  If you are healthy and will wear a mask you are welcome to visit for a very very short period because my energy level will not let me be sociable for very long.  My voice is also very weak.

To all of the prayer warriors to pray for calmness bravery and acceptance.  Pray for Marty as my caregiver He has also been writing this as I tell him what to say.  God bless each and every one of you with much love.

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,

FACEBOOK: good? bad?

I love Facebook.  I can keep in touch with family around the world, reconnect with childhood/high school friends, lurk, laugh at strange videos.  I also recognize the dangers of Facebook.  And I think twice before posting. 

Some friends feel that Facebook is too complicated, not secure enough, too ridiculous, dangerous.  And maybe there is a little truth to that. 

I want to share some great points about the Facebook.
The posts of good wishes and prayers for Marty and me this last year have meant the world to us.  The page for Diabetic Connect has taught me so much about my disease.
We have spread info to family and friends during my many medical emergencies. 
I have bragged about my improved health and body.
I am watching nieces and nephews grow up.  We live so far from them I may never see them in person again.  But I know important things that are happening in their lives.
I have reconnected with high school friends who have surprised me with what they remember about me.  One friend said she remembered I was fun and funny.  I remember I always thought she was so perfect, so nice, so ladylike, so much more mature than I was. 

Facebook does have dangers.  And it isn't just the young teenagers who post stupid stuff.  Friends post pictures drunk out of their minds.  They make crude statements.  Others make racist remarks,  they gay bash, they tell us their faith is the only true faith..  Political posts that are so untrue are scary the way they get shared. We can believe what we want.  But we shouldn't hurt others by what we post. 

The danger here is employers check Facebook and the internet to see a person's life.  Colleges probably check to see what interests students have.  We no longer live with much privacy.  Our lives are all hanging out.

How would you feel if that post was the lead in for the 11:00 news?  So think twice before you post. 

Happy Birthday to me

Today was my birthday.  I have had a lovely day.  Marty took me to lunch and then I had my hair cut and fluffed.  We ran errands, and we went to dinner.  The best part of the day, we were together.  All day. 

I received phone calls wishing me a happy birthday, my brother and his wife even sang to me.  I received lots of texts, e cards, cards via snail mail, and Facebook good wishes.   I really do feel loved, cared about, and lucky in my friends and family. 

In my family we celebrate more than one day.  As a friend says, we celebrate the birthday season.  Thursday Little Brother and Ann are arriving from Kentucky to take me out for a birthday dinner.  This may be the most expensive meal I have ever had if you factor in their transportation costs.  They will be here until Tuesday, lots of partying will happen.

What can I say, I am a Drama Queen

Valentine's Day I married couples all day.  Marty and I then went out for a drink and appetizers.  Later that evening I did not feel normal.  I could feel my heart beating, and it was getting faster.  I felt as if my whole body was vibrating.  We checked my pulse and blood pressure, not good.  With the blood pressure sky high and the pulse in crazy land, the Advice Nurse at Kaiser said go to an ER now.

We arrived around midnight and Triage did their thing.  I was put in a room and treatment began.  First gallons of blood drawn.  IVs started.  After multiple doses of an IV heart medication, I was back in the normal range.   They watched me for a while and decided it was safe to go home.  I was discharged at 7:30.   When we got home, we took long naps.  Both of us were exhausted.

We had realized we were in for a long night, so we posted on Facebook for friends and family to know what was going on.  We were going to call/text family and thought why wake up people.  They can't do anything and we had nothing to tell them.  We knew family all checked Facebook and it was the best and easiest for us to get out info. 

I have done a lot of resting since Saturday.  I have done some slow walking.  I found I have lost strength and zip.  Today I had a follow up visit with my primary care doctor.  He cut dosage on one medication, it is working too well, blood pressure and pulse dropping too low.  Right this doesn't make sense with the ER visit.  But in my normal life it does.  I do not need  to go to see him for 6 months. 

In spite of this set back, I am really doing well.  I have lost a ton of weight and will continue to work on that.   I am eating healthy.  And my vitals are 99% of the time in a safe range.  It is that 1% when the A-Fib kicks in that causes the excitement.

Day 5

If you aren't a Facebook friend you missed the joy of Thursday and Friday with the little darlings.  Things were just too crazy to write a blog.  Throw up girl was better, but she suffered from severe crankiness. Toddler Ava was teething and became more cranky than her sister.  Poor Hall didn't have a chance.  It was all about his little sisters.  Ann and I were run ragged. 


Both girls only wanted Grandma and screamed bloody murder if Ann touched the other one.  They didn't want Aunt Janet unless Ann was away running errands.  Teething child, the perfect eater, gave up food.  The only thing she wanted was grapes that give her diarrhea.  She knew they were in the refrigerator and stood and cried for grapes.  Sorry sugar, those diapers are too awful.  Throwup girl had projects for us and was still playing the I am sick card. 


The wine was flowing.  When the precious darlings were down for the night, we were pulling corks. Friday night was getting closer, Daddy Colonel was coming home.  Late Friday afternoon the phone rang.  His flight had been canceled, he didn't know if he would get home before Saturday.  Pour the wine, we don't get to retire Friday night. 


Friday night is family movie night.  We had rented a movie for the kids and extended their bed time. The two oldest were fighting, yelling, and on our last nerve.  Time outs with threats of no movie and being put to bed early.  Another time out and I am on my last nerve.  Where is my wine?  They did get to watch the movie.  But it was a close thing.


After several texts we find out United finally brought in another plane and Colonel Daddy will be home sometime in the middle of the night.  He arrived at 1:30 in the morning.  Great joy for his mother and me.


We let Colonel Daddy sleep in this morning.  But as of now he is up and they are his children.  His house rules are back in effect.  Ann and I do not even know these three children.  Marty is on the way to pick me and take me home.  Love these children, but as I said, this is just hard.

Facebook

Facebook is a new way to communicate. It is fun, silly, and tonight a bearer of bad news.

I was checking comments on the side of my home page, and one caught my eye. An album was posted by a friend about a long ago friend. This is how Marty and I learned an ex friend had died. Bad things had happened in years past. We hadn't seen or heard from him or his family in years and years. And then Facebook brought us up to date.

He died in his sleep last night. Even though we hadn't seen him in years, amazingly his death hurts.

FACEBOOK POLICE

I have decided I just don't understand Facebook. I thought I did. You ask people to be your friend; you take silly quizzes; you send virtual gifts. Some people post about their business if they are trying to network in a business world. You post your status every now and then. You become fans of people, businesses, causes. You comment on friends' Walls. And there are lots more fun and silly things to click on and to write about. Sounds fun, mindless and harmless.

I did most of the things above, except the business (I don't have one). Well the Facebook police , known as FBP from now on, have been active for the last couple of weeks. Articles after articles have been in the San Francisco Chronicle and the Oakland Tribune about Facebook abuse. It looks like I am doing nearly everything wrong.

The FBP don't like collectors of friends, those who have hundreds and have never met them. I am OK there. They don't like people who send gifts, take quizzes, join causes, fans of everything ( I just have a few in that category), post their status more than every couple of days, or make lots of comments ( OK there also). FBP don't want you to brag even a little, write sad things, be perky, share your illness, share any emotions, or just share.

So what is the point if all of the above is wrong? Yes some do give TMI. Some will not stop throwing pillows, or giving gifts. But does anyone really take this seriously? It is a fun silly way to reach out to people you don't see often. I will control my throwing hemorrhoid pillows at family members and close friends. But loosen up Facebook Police.

FACEBOOK PART 2

Well, I have played with Facebook all weekend. I went hunting for friends from Corbin High School and Eastern Kentucky University. So far none of them are on Facebook. I then looked for friends in my contacts' list. Not too many there either. And 90% of the ones I found are 45 years old or younger. Facebook is really a young person's site.

That said, I have declared myself young. The site is fun and I think it could become very addictive. I know people are highly competitive as to their number of friends. They are hustling to get just one more friend. I am happy to have any friends. During my search I ran across people with no friends. That is what it says, "Joe Blow has no friends." How sad is that?

One of the interesting things is you feel a little like a spy. People you don't know are "talking" to people you do know. I think people forget what they write is out there for the world to see. You are not just talking to your friend. Anyone can read it.

I will continue on Facebook. Gotta stay young.

Will you be my friend?

Two friends told me I had to join Facebook. A friend asked me to be his friend and join. My sister in law posted pictures on Facebook. I saw no need to join. I think I might be a little bit old for this type of networking. But I couldn't see the pictures unless I joined. So I did, join. Still can't find the pictures. Ann, where did you hide them? I am pretty sure they aren't there. I found other's pictures easily.

This is just what I need, a new excuse to play on the computer for hours. If this keeps up I will need to start wearing my tennis elbow supports. Anyway if you are a Facebook person I am asking you to be my friend. Find me at Janet T. Appel.