And now a word about my health

Monday I saw my oncologist and had lab work done.  The report from the doctor is I am doing well. In fact well enough to plan a train trip this summer.  Marty and I have only looked at getting through each day.  We have made no long range plans.  But there are some things I want to do before the end of this illness.  And a train trip to visit friends in San Diego is one of them.

One of the blood tests was called a tumor marker.  It was to be compared to a base line to see if the tumor was growing, shrinking, or the same.  The doctor says she uses it as a clue, it is not a perfect test.

Tuesday as I was waiting to go into chemo, I got an email from my doctor.  The tumor marker was down.  GREAT news!  I started crying with joy just as the nurse called me in.  I told him why I was crying and he hugged me and held me as we walked to my chemo chair.  Nurses in a chemo infusion clinic need good news too.

Before the chemo starts they take my vitals.  My blood pressure was high.  He took it again and it was higher.  I sat a while, took it again and higher.  Crap, I have been stable since December, what is going on?  After the chemo was done, before I could leave, the blood pressure was taken once again.  Still higher.  My doctor came to the clinic and we discussed what to do.  It was high enough to be border line run her to the ER now.  I decided to go to ER because I was afraid to go home.  After 3 1/2 hours and a change in meds the numbers came down. 

I had my blood pressure checked on Thursday afternoon to see if the meds were helping or hindering.  Too much meds and the blood pressure will plummet.  I was down in the normal range and now only have to make an appointment with my primary care doctor to get his thoughts.

Back to Wednesday, I had my heart echocardiogram.(I think that is the correct term.  It is basically an ultra sound of the heart)    If you remember the awful CT scan, a shadow around my heart looked as if there was fluid there.  Nope, heart normal, nothing to worry about. 

So all in all lots of good news.  I am not having awful side effects, I am walking 30 minutes most days, I am healthy in many ways.  So the prayers are working friends.  Thank you for the love and caring.  I feel you out there.

It has been a year and a couple of days since the great drama began

A year ago I went in to Kaiser and stayed for 8 days.  The great drama of A- Fib, diabetes, high blood pressure, and blood clots.  It was a scary time, and it was a life and death time.  Marty and I had to make decisions on my life.  Did I want to live a good life, or be a ticking time bomb?

We chose a good life.  We changed diet, exercise, cut back on commitments, and went through hell for about 9 months.  Lots of ER visits, midnight calls to the advice nurse, scary tests, and meds that didn't work.  Or meds that worked too well and I was a zombie. 

Around July things started meshing. I was used to eating healthy, still want bacon grease and butter.  I exercise 7 days a weeks.  I feel it is a punishment, I don't understand people who love exercising.  My meds were working together and no midnight ER visits.  Not even calls to the advice nurse. 

I have lost 95 pounds and am pretty cute if I do say so myself. 

Before

 

After with Marty, Little Brother, and Ann.

 



I feel fairly good most days.  I have learned to rest before I am exhausted.  I'm blessed with a husband who loves to shop and cook.  So a lot of routine work is off me.  I still cook, but rarely shop for anything.  Yesterday Marty came home with jeans for me.  He saw some 10 short, and knew they are rare and hard to find.   So he bought 3 pairs in different colors.  Yes, Marty is a keeper.

We understand none of my heath issues are curable.  But they are very treatable.  We know I will have flare ups and bad hard days.  But we know most days will be pretty normal.  Of course all of this depends on me following diet restrictions and exercising.  Boo hiss.  But I will do it.  I like my life and want to continue groups I am in and to continue volunteering. 

Most importantly I have learned that prayers from around the world help comfort and help with healing.  My blog friends and Facebook friends are very important to me and to Marty.  You all really helped us through a tough time.  Thank you. 

Stay tuned.  I am a drama queen so you know I will do something dramatic in the near future. 

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.

Things that happened this week

Monday was lab work day.  Marty was booked solid, so friend Pat took me for the blood draw.  We used my new handicap placard and parked at the door.  She then took me for lunch because she said I needed to get out and be normal.

On Wednesday the parents of a good friend sent Marty and me roses.  The note said it was to cheer us up.  And the roses did cheer us up.

They arrived just as I was throwing away the flowers my brother and his wife sent me two weeks ago.  Perfect timing.

Yesterday I felt pretty good.  Marty had meetings until early evening so I told him I would cook. This was my first attempt other than toast or a sandwich, at cooking in three weeks. 

This is healthy baked chicken breast with mixed vegetables and a medley of wild mushrooms.  There is just a little wild rice and the broth sans fat from the chicken, veggies, and mushrooms poured over it. 

Today not such a normal day.  I have been tired, and cranky.  Lucky for Marty he wasn't home.  All week my blood pressure has been in the safe range.  My pulse is still erratic, but not dangerously high. 

I am being good, eating healthy and walking every day.  I am up to walking 25 minutes a day. That is 22 minutes more than I could walk when I came home  That is not real fast, but steady.  I have to be able to walk strongly without tiring before I can go back to volunteering.  I also have to stay up longer than an hour at a time.  Baby steps.

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.

I think it is working!

On Facebook and on this blog I have mentioned blood pressure issues.  Part of the problem is family history, stress,  part is I love good food.  Dr. J is worried about my health, me too.  Sometimes I work with him and sometimes I am on that river denial.  

The stress level has dropped way down since we got to San Diego.  I only have to worry about cooking sometimes and making sure we have clean underwear.

I am still eating good food, just not as much.  Now some food I considered good, others might not.  I am a cheap date and love French fries, Cheetos, Kettle Chips, Cracker Jacks . . .    Do you see my problem?  I love junk food.  At the same time I love lots of gourmet food.  I just love food.  I have cut out most of the junk food, cut down portions at meal time, and for lunch I drink those really yummy canned shakes.  Yeah, they are yummy, not.

The biggest change I have made is exercise.  I hate to sweat.  I hate walking, my bad knee screams at me to sit down.  Even my hips don’t like much movement.  So land exercises are out.  For nine days I have been in the pool  for at least 40 minutes walking and doing exercises.  Water exercises do as much if not more than land exercises.  But they don’t cause the pain that land exercises do.  The water supports the joints at the same time it sets up resistance. 

When I started out I walked 40 laps across the pool, today I did 150 laps.  Every day I add to the number of laps.  I do arm and other leg exercises also.  I am trying to get healthy.  

Today I took my blood pressure.  It is down from 160/70 to 131/70.   This is a huge improvement.  I may go eat some M&M’s to celebrate.