Another Midnight Run - The Drama Continues

This week has been another week to try to get some strength.  It has also been one of more side effects of Chemo raising its ugly head.  I still have extreme weakness and dehydration.  I had blood work on Monday and then on Tuesday no Chemo but rather had hydration to give me some fluids.

The twenty six steps  have been a big problem getting me in and out of the apartment.  My legs are so weak it has been a major chore coming and going.  I am trying to walk more and more each day to build my strength back up.  Walking from the living room to the kitchen several times a day is helping.

On Thursday we had something else to deal with.  I was having shortness of breath  late in the day and by 10:00 it was so bad we called the advice nurse.  Must have been a busy day for them because after 30 minutes on the phone, she and the doctor agreed that  we should go to ER to be evaluated. Once again the Kaiser team went to work on me.  They immediately put me on oxygen and did a chest x-ray and an EKG.  IV with fluids to hydrate me and drained me of blood to start the detective work.  Also I did a 15 minute treatment of deep breathing with an albuterol brohodilator to relax my muscles in the airways and increase airflow to the lungs.  More than what you wanted to know right??

After that the doctor came in and said the words that I hate, CT Scan.  It hasn't been but five days since I had that done but they wanted to compare the two.  Since I had trouble breathing they wanted to check for blood clots in the lungs.  Thank goodness, no clots.

All of the problems relate back to Chemo, the tiredness and the weakness. It wan about 12:30 am that all of this was completed so I had to lay and wait for the evaluation.  At about 1:15 the nurse came in and asked if I was ready to go home.  Surprised I said yes.  All of the tests showed no issues other than what we knew so I was ok to be released.  I dressed and we got home about 2 am.

Today I feel a little stronger but it is just a little.  We will see what the next few days have in store as we prepare for Thanksgiving week with a visit from my brother and his wife.  Pray for more strength.

Kaiser to the Rescue !!!!

This week has had more drama than usual.  Monday the lab work (blood work) came back with lots of different issues.  When they took vitals I had a low grade fever.  They told me to check my temperature every hour or so,  parts were out of the normal range.  Tuesday instead of chemo they hydrated me and gave a mineral cocktail.  They told me that if my temp got to 100.4 or more to go to the Emergency Room.  The fever was staying in the normal range, but it jumped into the dangerous Will Robinson land after 9:00 pm.  So off to the ER at 9:30 pm ( we had to get dressed from PJs to clothes).

They hydrated me on arrival and then took "gallons" of blood.  Some of the tests would take three days because cultures had to grow.  About 2 am they decided to admit me to the hospital because there were so many issues going on.  I was still very very weak like last week, and maybe even worse.

From early Wednesday through late afternoon Saturday I was in the hospital.  During that time I was hydrated, on antibiotics (IV) and many minerals that I was low in.  They also fed me antibiotics during my stay to fight the infection.  As usual, Kaiser provided fantastic care and attention to me as if I were their only patient.  The blood tests came back including the cultures and all were in the good range except for one minor infection that I am treating with antibiotics for the next week and a half.

After i got home last night, I am resting more because the noise level is lower and Marty does not check my blood pressure every two hours.  Also the moaning and yelling patient down the hall is not here with me.  I am trying to walk more (with a walker) to regain my strength.  I am forcing myself to eat more even though food tastes awful.  Not because of Marty's cooking ,but because of my taste buds.

Prayer warriors, its been a tough week and I appreciate it so much.  We do not expect it to get much better so I need you to kick it into overdrive,   God bless each and every one of you.

And another health update

This week more of the same.  I continued to be tired, sleepy, and nauseated.  No chemo this week, so I was hoping my body would pep up.  But it didn't really.

I would get up, clean up and dress and that would wear me out.  But I know if I don't dress I will feel worse.  But no make up, that was just too hard.  To add to being in pain from my back, my bad knee decided it needed attention.  Now that isn't a huge problem I just stay off it, rest it, maybe ice it, and take Tylenol which doesn't do much.  That didn't work Tuesday.  I had a lot of walking to do Tuesday.

Tuesday was CT Scan day.  First I had to go to oncology to have my port accessed.  Then I had to walk to radiology for the scan.  I didn't think I would make it, the knee protested every step of the way.  This added to my anxiety about the scan.  A couple of weeks before I had taken the blood test, tumor marker.  It was up, not much but up.  Dr. Kuan said it is only a clue and it will fluctuate, don't worry.  Well I did some. 

All went well with the scan until I tried to get off the table.  My back said I don't think so.  And I started crying. The tech helped me off and I was to go to the dressing room.   I asked if there any closer than the one I used, yes there were.  Then she and the transport guy saw how wobbly I was and said they would let me dress in the scanning room.  The men in the safe room for techs turned around and I dressed.  They insisted I use a wheelchair to go back up to oncology.  I accepted.  He wheeled me to Oncology and I went in to have them take out the access line.  I lost it again and cried all over the nurse.  All this drama paid off.  The tumor is smaller and there is no spread.  YAY Prayer Warriors. 

That afternoon friends Pat and Kirsten came to visit.  They always make me feel better.  We laughed, did some serious talking about our lives, and enjoyed being together.

I slept all of Wednesday and ate very little.  Thursday was the first time in a long time I didn't take a nausea pill.  I still didn't like eating but did, sort of. Thursday night my two wonderful crazy friends from The Marriage Factory came to visit.  We laughed like fools and it felt so good.  They told gossip about co workers, flying lessons, trips they have taken, and we talked about every day goings on.  I was tired but felt so happy from the visit.  Love you Christine and Lourdes.  That would be in alphabetical order so Lourdes don't get your nose out of joint.

This morning I had a bone density test.  This is to set a baseline and check a disc problem. This is a very easy test for the patient, no dyes, you don't even have to wear a hospital gown.  I was in and out in less than 10 minutes.  The only problem was getting there.  My Kaiser doesn't do this test, certain Kaisers do certain tests and have certain departments.   Anyway, we were 45 minutes away one way for a 10 minute test.  It could be Monday before I get results. 

I am not as whinny as some of the blogs lately.  My friends and the nurses told me I don't have to be brave all the time.  I am allowed to be mad, sad, and scared.  Yes, I am human not always a superwoman.  Some days more human than others.

IF IT COULD GO WRONG, IT DID!!!

I am told I am a strong woman, a brave woman.  I am handling my life like a trooper.  Well yesterday I was reduced to a quivering mass of tears.  I cried most of the morning, screamed and cursed and was ready to kill anything one or anything.  No, cancer had nothing to do with any of this.  Well a little, stress upsets me a little bit more now.  This will be long and ugly.  So bear with me.

I began the day by picking up (like an idiot) a large piece of art glass.  So I messed up my back a little.

Then I did laundry.  Or I tried.  The second load did not spin out of the soak cycle.  This is a regular problem.  I had dirty wet towels.  I  tried to wring them out and threw them in the dryer (which I ran twice) and ended up hanging on a make shift line.  I talked to the landlord and he called a repairman. I have two more loads to wash.  The repairman won't be here until Monday.

I tried to give myself my Lovenox shot.  The syringe wouldn't push.  I pulled it out pushed and it worked.  I stuck myself again, and it didn't work.  I got a new syringe and this one worked. 

People it is not 10:30 and all of this is making me crazy.  I am upset, I hurt, and I can't fix anything.  Then I made a butt call to my brother.  This scared them because I never call early in the day.  We nearly always talk around our supper time and just before their bedtime.  Anyway, they called me and wanted to know what was wrong.  Bless my heart, I told them and cried some more.  They calmed me down and I moved on to my next task.

Background: And this is the short version.       For 40 years I have paid for a cancer policy.  Most women on my Mother's side of the family had one.  It was a cheap policy and after 40 years the pay out has not kept up with inflation.  But they owe and I have tried since October 2014 to  make a claim.  First I was told no such policy number existed, then they found me and after a couple of months they gave me my agent's name and phone number, a woman in Virginia.  She was very nice, but their computer system would not let her access my records in California, which is not her territory.  It took until June 18 to get someone in the Bay Area to help me. 

A lovely man came to my house, filled out all the forms, had me sign release forms for health records, copied my flash drive with all my Kaiser bills from 2014 to present.  He sent that in to headquarters. He told me Kaiser sometimes is slow releasing data if the insurance company needed more info.  He told me to wait a couple of months then do a status check. 

Okay, yesterday I decided 3 1/2 months was long enough for me to have heard something.  I called, they said my policy number did not exist.  Finally after I explained the last year to them they found me.  And then all hell broke loose.  She said I had not sent in complete records.  I asked why they did not contact me.  Why didn't they contact Kaiser?  Well they said I should have gotten a letter, but looks like it was never sent.  They didn't contact Kaiser because there was no release form signed.  I started yelling and being one of THOSE customers.  I told her she had just read what I had sent in and she said I had signed a release form.  Oh, right.  They should have contacted Kaiser. 

I now needed to re send everything to them.  They would MAIL me forms and information on what they needed.  I was reaching through the phone for her throat at this point.  She wouldn't let me talk to the person who was handling the claim.  I started yelling and crying.  Get me your supervisor.  Same crap from the supervisor.  All my responsibility, even though they had lost the forms and had not contacted me or Kaiser.

I told her off, yes there was cursing and crying involved.  I explained they are dealing with very sick people and they should care a little about us.  The whole time she talked over me with her set spiel.  I then told her I would be calling 7 on Your Side and would see them on the news. And I hung up.

I called the lovely man who had helped.  I am not one of his clients, he just agreed to help when asked.  He had kept all my records, and had records he had sent the information.  He sent everything in again.  He told me to wait until Monday to call for a status report.  And if they didn't have their act together, to call the TV station.

I felt better after talking to him and thought maybe I could finish the day as planned.  I was emotionally and physically exhausted and the day wasn't over yet.  We were taking a friend out for a birthday dinner. I really was too tired to go.  But I did.

We go to the restaurant and have octopus stirred fried and calamari deep fried.  It was delicious and I had no problem eating it.  I ordered a safe pasta dish not wanting to push those chemo taste buds.  Well the server set my bowl down and I nearly gagged.  The smell and taste was awful, to me.  So no main course for me.  Marty gave me some of his wonderful pork chop and always, pork tastes good to me. 

And that was how I was reduced to a puddle of tears all day.  Today I am calmer. 

   

Monday at Kaiser, scary

Big spoiler alert I am going to tell you all right off the bat, I am OK.  You don't  need to sweat bullets as my family and a couple of friends have.   Now for the gory details.

Less than 2 weeks ago I found a lump in my breast, right about where I had had a lump removed two years ago.  I first went into panic mode, so many women in my family have had breast cancer.  And many of them died from it.  I emailed my oncologist and saw her last Monday.  She felt the tumor also and put in motion for me to have a mammogram and possibly an ultrasound, needle biopsy, and maybe surgery.  In 6 hours I had my appointments set up and felt something was being done.  I was set up for Lab work on Sunday.  If my blood work wasn't in the normal range, they couldn't do a needle biopsy.  We only told a small group because I had no game plan.  We decided when we had a game plan, then we would ask for prayers if needed. 

This afternoon I went to the Women's Center in another town from my Kaiser.  They did a mammogram, yep there was a tumor.  Then the ultrasound. Text book tumor.  Not to worry.  But glory to be, no needle biopsy.  I have a Fat Necrosis that was caused by the trauma of the surgery 2 years ago.  The tumor is right where my scar is.  It rarely happens after surgery, but you know me, gotta keep it interesting.  Since it is all my body cells, it doesn't have to be removed.  It is not a foreign body as the other tumor was. 

Now this is probably really over sharing.  But I need to put it out there and let people know to check all parts of their body.  Saturday I found a lump, yes another lump, in my, shall we say, Lady Parts.  I was pissed.  What is wrong with my body to be growing lumps suddenly?  Isn't the one on my pancreas enough trouble?  I talked to the Advice Nurse, watched for more swelling, infection, whatever. I did warm compresses and hoped for the best. No one said to check for bleeding, should have.  Minor bleeding this morning,  not normal.

I was given an appointment for this morning to see a gynecologist.   Lovely woman, who had read my record and contacted the oncology department before checking me. The lump was a little painful, but not awful. Even though the lump was a little bigger than a nickel, it falls in the pimple category.  I never had a bleeding pimple, but that is way better than what I feared.  She excised it and gave me follow up instructions.  She said women just develop them and it is no big deal.

Again I received quick care, and good care.  All who worked on me were kind, informative, and patient with my WHY questions.  I do love Kaiser.

Yesterday at Kaiser

First off blood work would not allow chemo this week.  I feel fine, just tired some days.  The post below was very hard to write and will be hard for some to read.  Feel free to skip it.  It was written more for me than anyone else. 

Marty and I were asked to be interviewed in a new program at San Leandro Kaiser.  It is called the Lunchtime series.  The series is for Kaiser staff: social workers, nurses, doctors, techs,  dieticians, chaplains,  most anyone who interacts with patients.  The purpose is to help staff understand the emotional side of a deadly diagnosis and what more they need to do once we leave the hospital, ER. office visit, whatever. We were interviewed for an hour for the interviewers to learn about us.  Then yesterday was the real show.

I was really dreading this.  They had asked us to talk about some hard stuff, like death, what had we lost from the illness, and what had we gained.  Could I do this without breaking down, could I stand to watch Marty talk about what it had done to him?  This was going to be emotionally draining.  We wanted to do it if it would help one person see what goes on when the patient is home. 

Being the vain creature I am, I obsessed about what to wear.  Staff would be in "medical" uniforms, so I shouldn't be fancy.  This is California everything is pretty casual.  At the same time I was being interviewed and should not be real causal. Being a Southern Belle I was taught to dress for the occasion, and never go out of the house looking "like something the cat drug in".  I try to live up to the Southern standards. 

Marty wasn't home and I wanted to send this a picture of the outfit to some friends and family.  So I took the dreaded in the mirror selfie.  Tacky, but it worked.  Everything was built around the hat and glasses.  As I posted on Facebook, I think I look pretty kick ass.  

We get to the conference room and it looks nice.  Since it is lunchtime there was food for the audience, and us if we wanted it.  We didn't want to be eating and talking at the same time.  So we ate earlier.  

Getting ready to start.  I was a little nervous.  What if chemo brain struck and I couldn't make a complete sentence?  

We began with my family history, both sides, of cancer.  My father, mother, grandmother, sister, brother, aunts, uncles, cousins, niece all had cancer.  Some made it some didn't.  We talked about how in the 40's and even up into the late 60's you didn't talk about having cancer.  It might be catching, it made you different, there was almost a shame to having cancer.  It was all very secretive.  Except in our family.  

We talked about it.  As a 5 year old I knew how sick my father was.  We discussed Grandmother's treatment.  And Ernestine's, and Mother's,and the lady's down the street.  Talking helps to grwo a scab on the hurt in your heart.

They asked how I handled all the sickness and death growing up.  Well, you only know what you live with, I thought my life was normal.  Other people have doom and destruction in their lives too.  You just keep on keeping on.

There were questions about what I had lost (I didn't mention no hair, but they showed a picture of Marty shaving my head) and what I had gained from having cancer.  I lost a friend, I lost freedom because I can't drive.  I lost my two fabulous volunteers jobs. marrying couples and working with first graders.  I lost a way of life.

I gained an even stronger marriage.  Some spouses can't handle sickness and disappear.  Marty has been incredible.  Our son has really stepped up and helped us.  I gained deeper friendships in many areas of my life.  People have helped us in so many ways.  My Prayer Warriors all over the world, my babysitters, the ladies who drive me everywhere, my phone friend who is 88 and can't drive to me. I have my friends who visit me.  Friends brought meals. I have friends who check on me on Facebook, email,or texting. I have friends who protect us from too much friendship and put the word out don't bother them now, we will let you know when things are better. I do feel the love.

Finally they asked the big question, how do I live with knowing I have a death sentence, how do I keep going on.  I did break down a little then.  I told them we live day to day and we do have a good life.  But I also told them this is not just  my death, it is Marty's too.  It is the death of a marriage, but not of love.  It is the death of a way of life. 

I told them I have a little bit of denial still, this isn't real.  I have hope, cures are found everyday, so I have to still be here when they find one for me.  I told them I do believe in heaven, read my Bible, go to church when able and when the doctors will allow, 

There were a lot more areas covered.  Afterwards was Q n A  from staff.  They were so grateful for us sharing our story.  They came up and hugged us, told how touched they were by our willingness to share.  They also were happy we were pleased with the care I receive from Kaiser. 

This was hard to do and hard to write.  Today is maybe a bit of me venting my emotions.  This wasn't as funny a post I have done.  But trust me I made them laugh, more than once.  And I made some of them cry.

Yes I did, I just played the cancer card

Today was chemo day and per usual the pharmacy did not have my meds ready on time.  They were only an hour late today.  Again Marty went home to work, and came back later for me.

I order my Lovenox (blood thinner) online and then plan to pick it up on chemo day.  Because it is prefilled syringes it can not be mailed. Of course it is never ready and we have to wait, sometimes over an hour.  Sometimes they don't have any and have to order it.  Then we have to come back in a couple of days.  That is why I always order way before I am running low. When we arrive to pick it up, then they tell us sorry.  Hello, let me know before hand.  We have decided I am the only Kaiser patient taking this drug.  Other Kaiser pharmacies never have it in stock either. 

I had ordered online, picked the pharmacy I wanted, and clicked checkout.  We were sure it wouldn't be ready, but went to get it after my chemo infusion.  We check in and guess what, order not filled.  I was pissed off.  Sweet gentle Marty, who never gets real mad, was livid.  The clerk was going to check if they had enough or if they would have to order it. 

She came back and said yes they had enough, but it would take at least 15 minutes to fill.  We have already waited 10 minutes. And the line to pick up is about 30 minutes long.  Been there often enough to know where you don't want to be standing.   It is past 1:30 and I haven't had lunch because of chemo running late. My sister in law says something like, " Never get between a Triplett (maiden name) and food."

I am tired, hungry, and have my I hate Kaiser Pharmacy pants on.  This is not going well.  I tell her this happens ever time we come.  Never ready, why should I bother ordering on line as they ask patients to?  She says she will have them call my name when it is filled and I won't have to stand in the pick up line.  This will only take 15 minutes.  Then I did it.

I looked her in the eye and said, "I just came from chemo and I am fading fast!"  She walked over picked up the Lovenox and let me pay at her window.  I did not lie, I did not exaggerate, and I did not become a screaming crazy woman.

I will save my other cancer cards for other stressful stupid events.  It worked and I know I can't abuse these cards.  But if you've got cancer, you might as well use it to your advantage.  Hmmm wonder if I could score reservations at fancy restaurants?

Chemo week and some observations

First off my chemo day went better this week.  No trip to the ER.  The only side effects were being very tired and of course the hair disappearing.  Eyelashes and eyebrows are thinner, my buzz cut is just about all gone and there is just scalp now. 

As I have said often, I am a vain woman. I have said if the house was on fire, I would dress and put on my makeup before I would let the fireman see me.   Vain has some ugly definitions.  The only one I like is concerned about one's own appearance.  I am not too over the top about my appearance, but I have high standards.  I try to look neat and well turned out when leaving the house.  I admit last November and December when I was so sick, I let some things slip. 

I wore looser clothes, slip on shoes, and no make up.  The loose clothes were because Marty was having to dress  me, I was too weak to dress myself.  No make up because that took too much effort.  Slip on shoes because I could just slide them on, no bending over to tie shoes.  But I still looked neat and clean.  I was pale and needed makeup, but that one was just too hard.  Evan though I wasn't a fashion plate, I looked better than many of the people we saw at Kaiser (caregivers not just patients) and even at the grocery store. 

Now that I am feeling so much better I look pretty good even when I go to chemo.  Cute sparkly hat, coordinated top and jeans.  Of course full make up.  I feel better looking "normal".  I have even worn my Kick Ass boots to appointments.  And I wear my leather motorcycle jacket with them.  I really feel great when I wear those boots.  Thank you Little Brother and Ann for taking me shopping for shoes.

Now I am not judging but making an observation here.  Nearly everyone getting chemo looks like they are homeless.  Their clothes are mismatched, stretched out, and sad.  This is men and women.  They look as if they have given up, they don't care anymore.  I know how awful chemo is, I nearly died from the side effects.  I want them to still care about their look.  I want them to feel good about themselves.  I want them to feel loved as I am.

I know I have the greatest caregiver in the world.  Maybe they don't have the support I do.  Maybe their spouse, friends don't think about how they look.  Marty knew I needed warm clothes, looser clothes. he knew I wanted to still look normal.  So he went out and bought sweats that looked like regular slacks and they were in pretty colors.  He bought fun/cute shirts that were warm and easy to get on.  He kept me looking pretty good through those really sick times.  He knew I might be sick enough to die, but I would go out looking good.  Thank you Marty.

And that is what I want for the other patients.  I want them to care, not to give up, to look good and that will make them feel better.  Vanity is not always a bad thing.

Health updatae

Well, you may have noticed I have been silent for a while.  Last Saturday I was in the  infusion clinic for a treatment and all hell broke loose.  Lightheaded, blurred vision, weak, pounding heart, I was  rushed to ER.  At one point Marty said 7 doctors were working on me.  Heart rate was over 200, that is not a typo. 

From ER I was placed in the Intensive Care Unit.  Finally the A-Fib was stabilized.  But I had infections, and they didn't know what.  So everyone who came in my room had to gown, mask, and glove up.  By the second day they said only wear mask.  The third night I was moved to a regular room.  There I was in protective isolation.  Anyone who came in my room had to wear a mask.  When I was taken for tests, I wore a mask to protect  me from others' germs.

It took a while to identify my infections.  All are very treatable.  I was weak, barely able to turn myself in bed.  When they finally let me up to walk, I needed a walker and 100 feet was a long long walk.  Christmas night they said I was strong enough to go home.  I was terrified.  I could barely walk and they were turning me out.  Of course they were right.

Just the one day I have been home I am much stronger.  I walked lots further today and am doing exercises for swelling in my feet and legs. Marty's food is so much better than hospital food.  Today I have eaten more than I was.

I am now called a frail patient.  Many things wrong, some not fixable.  But I can keep working on getting stronger and have a pretty good life.

Now as for Kaiser . . .  again they saved my life.  They give incredible care.  The hospital did not have an empty bed.  They were overworked and running on holiday staff.  But as far as I felt, I was the only patient there.  Kind, gentle, caring staff.  Thank you Kaiser.

Wonderful Week!!!

My brother and his wife, Hank and Ann, flew in last Saturday and left at 6:00 this morning.  We have had a great, wonderful, laughing good time.  Because we are a one bathroom one bedroom apartment they didn't sleep at our place.  A dear friend who lives close by hosted them, plus loaned them a car to get back and forth to our place. 

It was my off week from Chemo, so I was feeling pretty peppy. A couple of days they took me shopping for  a coat, sweaters and shoes. Now every woman knows that shopping is work.  Lots of walking back and forth looking for the perfect thing.  I can walk, I can even shop a little bit without help.  But this was a massive event.  No way could I walk for hours.  I poop out after a while.  How could I do this?  And the answer came from Ann, wheel chair.  I said no, that would make me too pathetic looking, plus I didn't' want to buy or rent a chair.  Again Ann to the rescue.  Did you know if you ask for a wheel chair at most stores, they will loan you one? 

They rolled me all over Macy's and Nordstrom's Rack.  I now have sweaters, a winter coat, and shoes that fit.  After a 100 pound weight loss, I was desperate for shoes that would stay on my feet. I even bought some killer boots.  We had fun and accomplished our goal, getting me warm clothing.

Another day we went to the jewelry store.  My wedding rings will not stay on my fingers.  So I am having several rings resized.  I have missed wearing my rings.  Next week I will get them back.  I am really excited about wearing then again.

Every day we went out for breakfast after our trip to Kaiser for my white cell shot.  Some times I ate before we went, others I ate with the family.  I always had hot chocolate.  Come join us and I will take you on a tour for the best hot chocolate out there.

Drama and Friends

Saturday Marty and I had plans.  We were having the carpet cleaned.  Saturday morning we would have to move furniture, get breakables in a safe spot, move a lot of plants.  Not huge but stuff to do.  Friday night I went into A-Fib again.  It was close to bedtime and I went to bed thinking in the morning the heart would have settled down.  Nope, didn't happen.  Still vibrating and very dizzy.

Again the call to the Kaiser Advice Nurse and Doctor. Again they said to come in now.  No problem, except we were close to the window of the carpet cleaners arriving.  I told Marty to just drop me off and I would call when they released me.  He didn't go for that.  He came in, made sure I was going to be kept and not in danger, and then left.  I received the usual excellent care from the ED staff.  And had to have all the same tests run that had been run last week.  After several hours I was to be discharged. 

Now how to get home.  The carpet cleaners are at the house so Marty can't leave.  I am too tight to call a taxi for a 7 minute ride. Plus I needed to pick up prescriptions and I needed someone to help me.  I was too tired to handle anything.  So I called friend Kirsten. She had Facebooked me to call if we needed help.  She lives less than 10 minutes from me and maybe wasn't tied up with her son's activities.  She said she would be there as soon as possible.

A tech wheeled me down to the pharmacy to get  my new prescriptions.  Kirsten was waiting there for me.  She went up to get my meds and they said, so sorry we don't have drug X.  (this is the drug Marty tried to pick up earlier this week and they didn't fill the correct drug.  I have since ordered it on line but it hasn't arrived yet.)  They could order it and I could come back in a couple of days. Or we could drive to Kaiser Oakland and maybe they would have the drug.  My powerful friend, Kirsten, explained to them I had to have the drug or I would have to stay in the hospital.  She said they needed to pull the drug from the supply the hospital staff  uses.  And they did.  Not a full prescription, but hopefully enough until the rest arrives by mail.  Then Kirsten drove me home.

We all have friends at different levels.  Some care about us, but we don't socialize much. Some are just party friends. Some we see rarely but they are close like family, some are there always when you need help.  Kirsten is one of my friends who is there for me always, emotionally and physically.  If she can't do it she will send her husband or a mutual friend.  She isn't my only friend I could have called, but she was the one I called Saturday.  She handled everything that I couldn't deal with.  She took me home, walked me up the stairs and handed me off to Marty.  Love you Kirsten!

Damn! I said that out loud.

You should never tempt fate.  I wrote I had been  "normal" for over two months.  And then like an idiot I said that out loud at my book group Tuesday night.  I didn't just tempt fate I waved a red flag.

When I got home that night I was in A-Fib, not bad,  no secondary things to scare us.  No reason to even call the Kaiser Advice Nurse.  We have gone through this over and over.  Nothing serious was going on.  Well, not until 2:00 in the  morning.

I drink a lot of water up until bedtime, so nature took its course.  I needed to use the bathroom.  Along with all my other annoying health issues I have vertigo.  So I always stand up slowly, be sure I am steady and then start walking, didn't work this time.  I just had cleared the bedpost and knew I was going down.  There was nothing to grab onto.  I bounced off the cedar chest, hit the table's pedestal leg with my head, and screamed bloody murder.   I hit hard enough I moved the cedar chest an inch (I found this out later from the marks on the rug) and moved the table a couple of inches. 

We called the Advice Nurse because I am on blood thinners and must be very careful with a head injury.  They wanted me in Emergency immediately. Thank goodness the new Kaiser is only 7 minutes from the house.  No more driving to another town.  Off we went, I was still in A-Fib, so knew they would keep me even if there were no head problems.

I checked out OK neurologically but the heart rate was too high and the blood pressure was way low.  After a couple of hours I sent Marty home to get some sleep.  I knew the blood work and the drip would be several more hours.  I was home before 9:00 that morning. 

I am sore and tired.  Marty had put an ice pack on my head, so no black eye.  We didn't ice my thigh and it is very colorful.  I was extremely lucky, no broken bones, no bad cuts or scrapes, no concussion.

So as I begin a new count of days not in the ER, I will not say them out loud.

Babysitters!

At my age needing a babysitter is ridiculous.  I am an independent senior citizen.  I do not need in home care.  Did you all buy that?  Yes there are days I should not be left alone.  My puny fainty days I do need a little help. 

As I last posted, Marty wanted me to have a babysitter while he had to lead a seminar.  As the day wore on, I was not getting much better.  He, and I, were afraid I would stand up and pass out.  So a call went out to friends, could someone come in a couple of hours and stay for 3 or 4 hours?  One dear friend, Pat, said she could almost make the window and had it covered.  She texted her son, Aaron, and he rode public transportation from San Francisco to get to me.  

Now if I ever have to walk down a dark scary alley, Aaron is who I would want to have my back.  He is street smart and intimidating.  The guy is 6 foot 9 inches tall.  But is he the person to help me out of the chair, walk me to the bathroom, recognize I was too tired to talk, and to be ready in an emergency.  Remember we had no car.  Yes, Aaron is a great babysitter.

Aaron had a plan.  If I needed medical help he would not let them take me to the bad Hospital that is closing in June.  He would text for an Uber car and take me to Oakland Kaiser.  He watched me like a hawk, followed me down the hall, sat quietly and let me rest.  And it gets better.

Mom Pat arrives and she and Aaron start planning supper.  Did I mention he is a culinary student?  The two of them pulled everything out of my refrigerator, threw out stuff I have been too sick to deal with, and started fixing roasted veggies and salad for dinner.  They did a compromise on the entrée.  When I mentioned wet burritos at Ana Rosa's across the street, the game plan changed.  Pat kept doing her thing and Aaron walked across to get our entrees. 

I wasn't real hungry but did damage to the veggies and the wet burrito.  They then cleaned the kitchen and walked me back to the living room.  I was better and we watched some Jeopardy yelling out our answers, talked, and laughed.  Bathroom breaks, I had both walking me down the hall.  Very protective of me, very kind to me.

I am very very lucky in my friends.  Other friends have offered to shop for us, run errands for us, have offered to bring meals.  Thank you all for the support.  And big hugs to my babysitters.  Much love.

When we last talked . . .

Well, I didn't make my appointment with the cardiologist on Monday.  Sunday night I had screaming high Blood Pressure, but no A-Fib.  Back to the ER.  They observed, took lots and lots of blood, and gave me different drugs.  Tests showed no heart attack, nothing wrong with any of the tests, but BP still high.  So I was taken to the Cardiac Monitoring Unit Monday morning.

The hospital doctor started me on a different set of drugs and thought I would go home that evening.  That didn't happen.  After midnight and Tuesday morning I once again had safe numbers and I was discharged by lunch time on Tuesday.

The doctor had told me I could start regular activities again, slowly.  I was ready to leave house arrest and start normal activity. 

Wednesday I wake up, start to get out of bed, and I start passing out.  What the hell?  It took an hour for me to be able to get up.  I was still very light headed and weak.  To take one of my new meds, I have to have a systolic blood pressure over 100.  I was at 73.  That is zombie land folks.  The high blood pressure lady now is in dangerously low BP land.  I talked to  Kaiser's advice nurse and advice doctor, and then I had a doctor phone appointment.  Meds changed again.  I have to keep a score card to know when to take and what to take. 

Most of the day and evening I was fainty and weak.  Friends babysat me while Marty had to host a seminar.  More about my babysitters another day.

Today I feel pretty good and even it made to my rescheduled hair appointment.  We then went to breakfast and Marty insisted I eat rich food.  I am still losing weight and the doctor doesn't want me to right now.  So I ate Eggs Benedict, and loved the richness of the very bad for me Hollandaise Sauce.

Now the worst part of this sad tale is about Marty.  He has been limping around for a week, terrible pain in his hip.  I nagged and nagged and he finally went to our doctor Tuesday after he got me home from the hospital.  Marty has bursitis.  The pain is bad, and the 26 steps don't help either.  He is trying to stay still and let the medicine heal him.  But Marty is not a sit in the recliner for hours guy.  So I am still nagging him. 

Tomorrow, Friday, I see my primary care doctor for new instructions. 

Stay tuned.

Update on me

Life has been wacko since Wednesday March 19.  I had chest pains and we made another run to Kaiser ER.  I did not have a heart attack.  They changed my meds, and told me to have a stress test.  That Friday I started the stress test, a 20 minute test, I lasted 4 minutes.  No pain, no shortness of breath, but elevated pulse and blood pressure.  An angiogram was scheduled for April 1.  Yes, quite a joke on me.

To have the procedure I had to be weaned off Warfarin a long term drug.  I started Lovenox shots, which are 12 hour blood thinners.  Yes, sticking myself in the stomach again. This takes 10 days. During that time I had limited activity and the only time I could leave the apartment was to go to Kaiser.  Finally I am off all blood thinners and have the angiogram.  Great results no blockage, no build up of plaque, the heart is fine.  Again another week of no activity and homebound. 

During the night after the angiogram I went into A-Fib.  Weak, fainty, pounding heart, also very low blood pressure.   Back to Kaiser to see my primary care physician, Dr. J.   He cut out some meds, and said I was anemic probably from the loss of blood during the angiogram.  An appointment was made for next Monday with a cardiologist.  Dr. J also told me to stop losing weight.  I needed richer foods at this time.  First time in my life a doctor said not to diet. He wants me to maintain and rest.

After 2 days my heart has calmed down and I am feeling much better.  Monday maybe we will find out why chest pains, why I suddenly started having elevated pulse and blood pressure with exercise.

Stay tuned.

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.

Tuesday

Tuesday was busy.  I left home at 8:00 A.M. to work at Kaiser School in Oakland, then drove to Pleasant Hill for a hair appointment, then to Walnut Creek to Kaiser Permanente for a retinal screening.  At this point the plan was I would then drive back to San Leandro, eat supper, drive back to Oakland for Book Group and finally drive back to San Leandro and get home around 10:00 P.M.

After my retinal screening (every thing is fine) I thought, I am crazy.  I am backtracking, burning gas, I have several more hours before I will get home, I am tired.  Marty was at a church meeting in Concord, close to Walnut Creek. He had done his bus/ BART/bus thing.  I met him there, sat through his meeting, let him take me out to supper and do all the driving.  Sometimes you have to listen to your body and just not do all you want to do. 

School was good.  One sweet thing happened and I wasn't even with the first graders.  There is a change of librarians, the past one is gone and the new one hasn't started yet.  Volunteers are running the library until the change over is done.  Ms. H asked me to take the children's checked out book to the library and have them teach me how to scan in/out books in order for the class to get new books.  No volunteer in the library, so I went to the office to see if someone there could help me.

A kindergartener was in the office and heard me say I needed to learn how to check out books.  He became all helpful.  The conversation went something like this.

Him:  My teacher knows how, she will teach you.
Me: But she has to take care of her class.
Him:  She will be glad to show you, she knows all about checking in books.
Me: She can't leave her class to help me.
Him:  Yes she can.  She'll teach you.
Me:  I don't think they want her to leave the class alone and come help me.
Him: You should stay after school and she can show you then.
Me:  She probably needs to go home after school.
Him: Go Home???

Little children do not realize teachers ever leave the building.  It stuns them if they run into their teacher in a store. 

And we have one more dumb thing

Today Friend Pat took me to the Alameda Kaiser for lab work.  It is an old building with lovely woodwork in the building and a split wooden front door with brass push plates.  There is an automatic door opener button.  I didn't notice the button and pushed the doors open and we walked in. 

A man rushed over and scolded us for not using the automatic opener.  I first thought he was worried for poor puny me.  No, he said, " Pushing the doors open is hard on them.  Use the automatic opener."  Really, either way the door opens.  Seems like the same amount of stress would happen.

I don't do anything the easy way.

Monday Marty took me to a close by Kaiser to have lab work.  This was the test to see if my blood was too thick, too thin, or just right.  The test came back in the just right range.  They need two tests before setting up the next 4 days levels of Warfarin.  I was to be tested on Wednesday when I had a follow up doctor's visit.

Tuesday night BP was in a low safe range.  I was excited.  Maybe I could start driving, go places other than Kaiser, start living a normal life.  Wednesday at the doctor's office, high BP, and a-fib acting up again.   All settled down  and I was to do lab work and then go home. 

Last night I took my BP and it was so very high.  We called the advice nurse and he conferred with a doctor.  I had taken my meds to start the drop hopefully.  They asked us to take BP again, still climbing.  They sent us to Oakland ED around 11:00. 

Oakland Kaiser care is close to Walnut Creek.  Lots of calming, meds given, doctors in and out.  Nurses constantly checking and calming me.  At 2:30 they said all looked good, a-fib gone, and discharged me. 

We slept in this morning, we both were worn out.  I took my BP at 10:00 and all was normal.  I took meds, Marty put the new patch on me, it is to give a more consistent dosage of BP med. 

I really wish this was a funny post, a happy post, a anything but medical post.  But this is my life right now.   Maybe my neighbors will do something dumb and I can write about that.

And the drama continued

Last Saturday I posted I was in the hospital and hoping to go home soon.  A lot has gone down since that.  First I will be OK.  A-fib is a lifetime condition and it takes a lot of people  to get the magic formula for meds.

Monday a nursing assistant was walking me.  I had to be able to walk with out tiring or shortness of breath before  being discharged.  He knew I was in trouble before I did.  I was really having trouble breathing.  Shortness of breath, where did that come from?  After an x-ray to check for pneumonia and a cat scan to see all other  possibilities, I had clots in  my lungs. A Doppler scan (I want to make a bad joke about storms etc. but will control myself) was done to check clots in my legs, none.  Then another cat scan of my brain (yes I have one) for bleeders from the meds.  Brain OK.

I was already on a blood thinner,  and then put on another one. This one is a shot into the stomach.  I couldn't go home until I could give myself the shots.  I put on  my big girl panties and learned how quickly.   Every night I thought I was going home the next day.  My heart had converted and I had a normal rhythm.

Every night something new cropped up.  Finally late Thursday afternoon I was discharged. We got home at 6:00.  I took my blood pressure before meds and it was sky high.  We called 911 and I rode in the ambulance to the nearest Kaiser. You have not lived until someone tries to start an IV on a bumpy road.  That one is off my bucket list.

I was not  taken to my wonderful Walnut Creek Kaiser, if was too far. I went to Kaiser Hayward. It is terrible.  I found out why everyone says, do not go to Hayward.  They treated me awfully, and implied I was wasting their precious time.  They sent me home.

The next morning my blood pressure was even higher.  I called the advice nurse, she conferred with a doctor.  He said I needed to come to the Walnut Creek ED.  And that is was safe for Marty to drive me, no ambulance needed.  I stayed several hours.  They checked everything out, got me stable again, and said it was safe to go home.

Last night BP was high but not as scary high.  I just now took my BP and it is down, not enough, but not ER high levels! 

I really hope all the drama is over now and I can just get on with my new life style.  Thanks for all the love and prayers sent over the last week and a half. 

Joe has sent me several posts about his weddings.  Until I am able to do marriages he said he has it covered.  Thanks Joe.