Tuesday, November 24, 2015

Things Just Got REAL!!!

This is Marty and I am taking orders as usual. J Taking dictation.

Since I came home  from the hospital a week ago I just got weaker and weaker.  Noodle legs kept me from walking and my recliner became my best friend.  It’s a good thing it is electric so I could get in and out of it.  Marty had fun giving me a ride to each room of our apartment in the wheelchair.

Thanks to my friends Janet, Kirsten, Lourdes, Sue and Vallery for coming to sit with me while Marty could do some of his work.  I also had our Elders from church, Lonnie and Roy bring communion and a visit from my minister Russ.

This past Saturday my blood pressure was 70 over 60 and I was too light headed to do anything so it was back to the ER in the early afternoon.  They started hydrating me and giving me antibiotics.  Got moved to my new suite at the hospital later in the day.  From the CT scan the week before my Oncologist confirmed this damn cancer had spread to my liver.  It’s been a week of crying, bitching and trying to be brave.  It’s easier to be positive because I am using less energy.  

Even though I am weak I am stronger than when I came in and can walk short distances.  I am getting better each day and hoping to go home soon.  Every day they come up with a new test that I have never heard of.  I am getting tired of being probed, prodded, poked, stuck and bled.  I know all of this helps in my treatment but it can be annoying.

My brother Henry and his wife Ann flew here from Kentucky Monday to be with us for Thanksgiving.  We may have turkey day in the hospital.  They have been great support to both of us.

Marty and I have to make a lot of major decisions in the time I have left and I am asking my prayer warriors to continue praying that Marty and I can get through this new time in our life together.

Friday, November 20, 2015

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.

Sunday, November 15, 2015

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.

Sunday, November 8, 2015

It has been a bad week

This week I have been weak as a kitten. We used a wheelchair to get me in and out of Kaiser.  I just couldn't walk that far.  Chemo went fine.  And they set me up to have two units of blood on Wednesday.  That was supposed to give me more energy.

I was a little nervous about the transfusion  First time things always scare me.  It went well and I had high hopes for a burst of energy.  Didn't happen, if anything I was weaker.   Blood pressure was low, I couldn't walk or stand without help.  Marty was wheeling me to the kitchen, bathroom, where ever I needed to be. He had to lift me off my chair which was hard for him.  I kept collapsing on him.

Then just to make thing better, I developed no warning diarrhea. Not a nice three days.  Today, Sunday, I am a little stronger,  I have walked down the hall several times.  No wheelchair today. 

This is short because it takes energy to think and write.  It is nap time again.

Friday, October 30, 2015

This week's update

Monday I saw the oncologist.  She told us the second tumor marker was lower, the bone density test was normal, and the CT scan showed no spread and the tumor was smaller.  Then she told us that it is very rare for pancreatic tumors to decrease.  They are happy if they can just hold them at the same size.   Prayer Warriors you are doing a great job.  She thinks I am anemic and suggested I have a couple of units of blood. 

Tuesday I had chemo.  I was nauseated before I got there.  They took my blood pressure and it was 99/67, not good.  That also explained being so tired.  I slept the whole time of chemo, I've never done that before.  The transfusion will take 5 hours, so an appointment was made for Wednesday.  Later we got a call, my hemoglobin is low, but too high for a transfusion.  They balance side effects I am having with possible side effects of a transfusion.  So the appointment was canceled.

Wednesday was a pretty good day. I went shopping with Marty and didn't fall down in a faint.  The nausea was very slight.  I had hope for a good week.

Thursday, nausea and so very weak and tired.  I could hardly walk down the hall.  I was holding on to everything to stay upright.  I slept all day long until Pat and Kirsten came by to eat supper with me.  I watched them eat the lovely Greek food they had brought and ate my stand by, peanut butter. 

Today I have slept nearly all day.  I just can't stay awake.  But around 5:00 I felt awake and a little stronger.  I haven't done my regular walking in a month, only  Kaiser halls and shopping on Wednesday.  So today I walked for 15 minutes, again holding onto furniture and walls.  I know I have to walk, but it is so hard. 

I am trying to eat something even if it tastes awful.  I am losing weight again and that is dangerous.  Since I can't stand chocolate anymore it is hard to get extra calories.  Marty treats me like a toddler and says no you can't get down until you eat X more bites.  So I try to eat. 

These side effects are not as awful as some I have had.   But they seem to make me more cranky and bitchy.  I go to bed tired and I get up tired.  I dread food.  But I am not in pain other than my old lady joints.  I  will just sleep and try to eat and maybe at some point I will pep  up again.

Friday, October 23, 2015

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.

Monday, October 19, 2015

Couldn't eat or drink, but still had a good time

The last month has been hard: tired, nauseated, chemo taste buds gone wild.  I have been a complaining mess.  Saturday we had some normal.  We hosted the A Team for an afternoon of wine and appetizers.  For new readers click here for info on the A team.

Friday, Marty and I made country ham puffs, a cold lemon soufflĂ©, and lobster cup.  Surprisingly I was able to cook  the first two dishes almost without any help.  We had champagne chilled, cute cocktail napkins and were ready to go.  Now the night before Marty had said we would cancel the party if I didn't feel better. 

Saturday I got up wobbly as a drunken sailor.  I could only walk holding on to walls, banisters, and furniture.  Not a good sign for partying.  The A team arrived and started pulling out food.  Oh my word, did we have food.  And more champagne and wine.  It looked like a party.

Some of the goodness we had to eat.

Many more dishes were brought in to eat.  So many they were crowded on the table.  We had cheesy olive balls, chicken satay, country ham, lobster rolls, figs wrapped in prosciutto, corn dip, tomato  jam, Almond Tart, creme fraiche dip.  I think that is all, sorry A Team if I forgot something.  Chalk it up to chemo brain.

I am sure you are wondering how much of that I was able to eat, precious little.  I tried things, but it all tasted wrong.  But I got enough to have a small meal, and at least did not have to break out the peanut butter.  Peanut Butter was covered in the chicken satay dish.

I pretty much sat in my recliner and let people wait on me.  They brought me food and water and wine.  I stuck with the water.  No champagne for me, dammit.  We laughed, discussed foods, my health, and the missing Texas couple.  Good conversation, good times.

In the top picture you can tell Lew and Hank are holding up.  I am leaning on Lew and Hank is holding onto my waist.  Thank you for not letting me fall.  The bottom picture Hank if still holding me  up.

I love my A Team, and we can't wait until the Texas couple retires and can travel to see us.  Miss you Karl and Deb.

Friday, October 16, 2015

Weekly or is it Weakly update?

This week has not been as bad as last week.  But it hasn't been a great week.  If you remember I hurt my back last week, not badly but it hurts.  That has been a large part of my problems this week.  For the last week I have slept in the recliner because I can't get comfortable in the bed.  I am not that comfortable in my chair, so broken sleep.

Monday I had lab work.  Also it was the first day in over a week I didn't need nausea medicines.  Nothing tasted right, but at least I didn't feel as if I was going to upchuck.  Energy level was low but I wasn't exhausted. 

Tuesday was chemo day.  No big deal, no extra nausea.  But food had become an issue.  I was hungry, but the sight, smell, and taste of everything is just terrible.  I could smell all my neighbors' meals simmering away.  Yuck!  Friends came by before going to Book Group late afternoon.  They  wanted to pick up supper for me as they bought theirs.  I told them no thanks, I would stick with peanut butter.   They had wonderful Mexican and I didn't.

Wednesday I was really tired and my back hurt.  I didn't feel like doing anything, so I didn't.  Erik was here and besides all he regularly does to help us, he gave me some computer help.  I don't know if he realizes how important his visits are.  We talk, he works, we laugh, and of course we all three are playing on our IPads and sharing silly things.  That night I did not sleep well, I hurt and there was no way to get comfortable. 

Thursday I was a mess.  So tired and felt as if I were drugged. I slept off and on the whole day, even up until bedtime.  The nausea was back and I hated the thought of any food, even my safe peanut butter.

I worried about things I need to do today, Friday. We have invited our A Team (a group of friends who cook and have fun together) for pot luck wine and appetizers on Saturday afternoon.  I told Marty I didn't feel like cleaning the apartment and wasn't sure if I could make my appetizer and a surprise dish.  And my protective hero says we can cancel if you don't feel well enough.  Not going to do that.  I want to visit with these friends and I want some normal.  Marty will get stuff done even if I do have to sit in the chair all day today and tomorrow. 

One awful thing this week, chocolate no longer tastes good.  Before, even if I had just thrown up, chocolate would taste just fine.  This week I did a study of all different types of chocolate.  I tasted expensive chocolate, Milky Ways, M&M's, lots of different brands.  Nearly all were icky, some so bad I spit them out.  My taste buds are very sad. 

The week wasn't awful, just tiring.  I can do this manly because I have no choice.  I will make the best of it, blog about it, and vent about everything.

Sunday, October 11, 2015

This week has kicked my butt

As I posted in the two previous posts, lots of tests, trouble on the home front, and I did not handle things well.  I really thought after crappy Wednesday, I could carry on as the brave strong woman I am.  Nope, did not happen.

Tuesday as usual I had chemo.  No big problems Tuesday or Wednesday.  Thursday I was nauseated, but not bad enough to throw up.  As my mother used to say, "I'm 5 minutes before vomiting."  This week instead of diarrhea, I was constipated. So I was getting the cramping but no action.  The nausea has continued up to this very minute.  The pills take the edge off, but the nausea never really goes away. 

I have had no energy all week.  I just sit in the recliner and watch idiot daytime TV.  Or I sleep.  Chemo brain will not let me read much more than the comics in the paper.  Add to that I have eaten very little this week.  Chemo nose and taste buds have kicked into overtime.  Just about everything smells awful, and I sometimes gag looking at food shows.  I know, I am a mess.  I'll tell you just how bad I am, my go to food chocolate tastes wrong.   

Friday friends came to take me to lunch.  I chose Chinese, for some reason that always tastes good.  Well, it wasn't bad, but it wasn't right.  I just picked at my lunch and brought it home to Marty for his supper.  At least my friends and I had a good visit.

The Blue Angels are in town for Fleet Week.  They fly over the house at least once a day (they are using Oakland Airport for home base, which is less than 10 minutes away.)  Marty and I wanted to go to one of the marinas and watch the real air show.  Well, I did well to dress yesterday. No sitting on the shore and watching the show.  I can't go today either. 

I am tired, puny, and whiney.  I don't feel bad, I just don't feel good.  My get up and go has got  up and gone. 

Thursday, October 8, 2015


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.