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. 

Monday, October 5, 2015

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.

Friday, October 2, 2015

Once again a health update

I have some good news and some bad news.  Let's do the bad first and reward ourselves with the good.

Throw back Thursday almost was throw up Thursday.  Again the Thursday after chemo I was sick.  Yes that awful word diarrhea entered my life starting at 4:30 in the morning and was not controlled until around 10:30.  Of course there was great nausea to go with it.  As I have said before, I do have a cast iron stomach and rarely throw up.  Yesterday I wanted to throw up hoping to feel better.  No such luck. The nausea pills sort of made me  more comfortable.  And I was so terribly tired. 

For lunch I had maybe a quarter cup of applesauce and some water.  I had nothing for supper.  I slept from 11:30 until 9:15 that night.  The only reason I woke up was because my alarm went off to take my meds.  I stayed up a couple of hours and then went back to bed.  I slept 10 more hours. 

Today I feel much better and was able to eat some peanut butter and a chocolate chip cookie for lunch.  For supper I am going to try grilled cheese and tomato soup, the perfect comfort food.  I think this is going to be a way of life again. 

Chemo side effects are accumulative and I have been doing this type since January.   As yucky as yesterday and the other Thursday were, I will take this.  It isn't as awful as last year at this time.  We must hope it says at this level.

Now for a little good news.  Last year early Fall I was told I couldn't go to church.  I was too sick and too many germs to jump on me from bulletins, chairs, friends.  This week(because it is now flu and cold season) I asked when to stop going to church and the lovely Dr. Kuan said keep going as I feel able.  Just no hugging or kisses.  So FCC friends, I will be there hit and miss and we can elbow bump or wave to each other.

Overall doing well.  Not thrilled with Thursdays now, but I've been through much much worse.  I can do this as long as all my friends, family continue their prayers.  YAY Prayer Warriors!!!

Sunday, September 27, 2015

Chemo nose and chemo taste buds strike hard

Last night we prepped a wonderful dish, mussels and clams in broth.  (the mussels and clams weren't cooked until today).  Friends were joining us for lunch Sunday. Well, Marty prepared the broth and I washed a gazillion bowls, utensils, pots and pans.  He does love to drive me crazy dirtying every dish in the house.  While he worked on the broth I sat in the living room, the smell, aroma to him, was ticking off chemo nose.  I would go to the kitchen every 20 minutes or so to wash more dishes, then rush back to the living room. Marty also made an Angel Food cake which he iced this morning. 

Our friends brought a wonderful salad for us. It even smelled good, and was beautiful. Marty said it was really good.  I wouldn't know,  I forgot to tell them I can't eat raw veggies. 

This was a mussels meal I had asked Marty to make for our friends.  It is a recipe Marty developed. The broth is so rich with all the veggies cooked in it.  I love this meal.  So the meal began with me watching all eating the salad.  I could smell the broth and mussels cooking and knew this was not going to end well.

Marty filled the bowls with the dish and then put one in front of me.  I almost screamed, no take it away, I can't eat this.  I was gagging, but I didn't throw up.  The smell was just awful to the chemo nose.  I watched them eating one of my favorite meals and having to smell it.  I ate peanut butter on Zesta crackers with applesauce.  Not great, but doesn't gag me.

Then he cut the Angel Food cake and served us nice big slices.  Chemo nose said more, more. Chemo taste buds says this is good stuff.  It tasted normal, which would be wonderful.  So many things if they don't gag just taste wrong.  Love the cake and will have some for supper too.

I had planned to take pictures of food and chemo brain forgot.  Trust me, this chemo stuff is disruptive to my life.  But it also is giving me life. 

Saturday, September 26, 2015

No Chemo Week

A week ago as I blogged I was one sick chicken.  Things improved, but for an off week, not much.  I still have light nausea, very tired, no energy to do anything.  I take the nausea pill and it helps.  But food has not interested me this week.

Chemo nose and taste buds are back with a vengeance.  Some foods smell so awful I think I will throw up.  And then I taste something and it is just wrong.  Sometimes it tastes really bad, and sometimes it is just is a little off.  Marty keeps cooking stuff to tempt me.  I have even cooked.  Didn't even really like what I cooked.  The really sad part, sometimes this is food I have raved about in the last couple of weeks.  Some days no problem, some days trouble.  Peanut butter and Honey Nut Cheerios still taste fine to me.  Cold milk is good.  Some nights a little wine, some nights I pour mine in Marty's glass.  Every meal is an adventure.

What did I do this week if I am so tired?  Well this was Erik's off week and I did the laundry.  Not a big deal for most folks but it is for me.  I dusted the apartment Friday, we have guests coming today and tomorrow.  Marty is doing the floors and heavy hard stuff. After my little bit of cleaning I was done for the day.   Some days just showering, dressing, and walking take all my energy and I am done before noon, in the chair resting. 

Monday I see my oncologist and will have lab work.  Tuesday I see my  primary care doctor and then have chemo.  If I feel like it my chauffer of the day Kirsten is taking me to lunch. 

So in summary, I am tired, nauseated, have low energy.  This is normal for my condition.  I still am much healthier than I was in December.  In fact to be so sick I am really doing well.  I just have to accept I can't do everything I want to do. 

Saturday, September 19, 2015

What do I do all day?

So I can't volunteer anymore and I can barely stand daytime TV.  How do I keep from being bored?  I play on the internet, do the social media thing, or play solitaire. Every now and then I clean.  But mostly I read.  Of course that depends on how chemo brain is doing.  If I am not tracking well, I can't read "good" books, so I read what I call light garbage.  Lately I have been able to read and keep up with the plots.  I recently finished a really fun well written book by Jack Fredrickson.

Disclaimer:  I consider Jack a friend even though we have never met.  I write him fan letters and sometimes we email back and forth.  He also is a Facebook friend.  When I was so very sick in the hospital, he emailed me regularly.  I was too sick to type so Marty would email him back .  That said, if Jack wasn't such a good author I would not be recommending his books.

The Confessors' Club is the latest in the Dek Elstrom series.  Dek's ex father-in-law, who hates him, hires him to investigate the deaths of some powerful men.  Accident, natural causes, or murder?  Well it is a mystery so murder sounds right.  There are lots of twists and turns.  Relationships are pushed and pulled.  We deal with his ex wife and his girlfriend.  We have a high body count, which blood thirsty me always enjoys.

Dek lives in a multistory turret that he is trying to finish up.  And what is the fun of living in a medieval looking building if you can't protect yourself and friends with a medieval process?  Just one of the fun parts of the book.

We have the IRS, local police, out of town police, and the FBI involved.  Dek is pulling the strings together to find who is the bad guy, or is it bad guys.  One of the most tense part of the book is a search of the Confessors' Club.  Will he be caught, shot, or get away with it?

A tree is a character in this book.  And you will really care about the tree.  This is one of Jack's cool touches, he  makes you care about something in the middle of murder and mayhem. 

Jack has a great way with words.  He paints pictures, he keeps us tense, he makes us laugh.  And it is a really good mystery.  The link above is to Amazon, so read the free chapter and get hooked.  Then buy the book.  I do recommend you read the books in order.  Dek and his friends evolve over the several books. But this book and all of his work as stand alones.  If you can't buy, go to the library and have them buy the series. 

I hope you will read this book.  It is very good and well plotted. 

Friday, September 18, 2015

Oh Hell, I said it out loud, then . . .

I keep saying don't tempt fate, don't say it out loud.  But I did, I said several times how great I feel, how nice not to have real icky side effects.  Yesterday it bit me in the butt. 

I felt fine when I got up.  I ate breakfast, made the bed and started my walk.  (I walk in the house because I am too wobbly to walk alone on the sidewalks. Thanks goodness I was home when all hell broke loose.)  Marty was taking a shower and 15 minutes into my walk suddenly I have severe cramping.  We are a one bathroom home. 

I kicked Marty out of the bathroom and try to live through the cramping.  I was also very nauseated.  And then I broke out in a sweat.  Sweat was pouring down my body just to add to the discomfort of diarrhea and nausea.  I took meds for nausea and diarrhea.  I looked in the mirror and I was white as a sheet.  Let's just say I looked like death eating a cracker. 

Finally the meds kicked in and I was not so uncomfortable.  The nausea was not gone, but was bearable.  I slept off and on all day.  I was exhausted.  I couldn't stand the thought of food and only had broth for supper and a little water.  I took meds again before bedtime and slept fairly well.

This morning I feel better, but still have some nausea.  I have taken my meds and plan to sit in the chair and sleep most of the day.  This is all was normal for chemo.  But it really threw me for a loop.  Denial had cropped up in my life.  I was thinking I could sail through this type of chemo with minor side effects forever.

I just hope this is just a one time awfulness and I go back to my side effects of minor nausea and tiredness.  This episode scared me and scared Marty.  He was to give a presentation and was worried about leaving me.  I sent him on.  I was sick but not as sick as last fall.  And I knew if I texted him to come home he would come running.  Plus I always have the Kaiser Advice Nurse and 911.

So friends, I don't know what time will bring.  Next week is a chemo off week.  Maybe things will settle down.  Keep your fingers crossed and keep those prayers going.  Also thank you for letting me vent to you. 

Friday, September 11, 2015

Update on chemo and other stuff

Monday I had lab work as usual.  I was really hoping for normal ranges.  It worries me if things are too low to take chemo.  I know the tumor won't gain on me in just one week, but I still worry.  Luckily all was in an allowable range and I had chemo on Tuesday. 

I am having more tingling and numbness in different parts of my body.  The doctor is surprised I haven't had more problems with neuropathy.  I hope it doesn't get worse.  I could have problems just feeding myself if I can't feel the fork.  Also sometimes there is pain involved.  I don't want to be drugged up on Mr. Morphine again.  I know, I'm borrowing trouble. 

Lack of sleep has been a problem this week.  I always have a problem sleeping the night of chemo.  But this is all week.  The question is, is it chemo or the heat wave we are enduring?   I am betting on the heat. This Victorian house has no insulation in the outside walls, so it doesn't cool down at night.  It just holds the heat in.   The house has been over 90 degrees at midnight, outside 70 degrees.  The fog is coming in and today is cooler.  Maybe I will sleep better tonight.  I do know I am really tired and really cranky.

In spite of being tired and having chemo I have done some normal things. I wash dishes, and make the bed everyday.  I changed the sheets, did the laundry (Boy did the hung up laundry dry quickly! 10% humidity and 101 degrees.  My own dryer inside the house.) 

Yesterday three friends took me to lunch.  We gossiped, talked about my Kaiser interview, caught up on their lives, and laughed a lot.  It was a lovely time and I hope we can get together more often.  They are busy ladies, so often probably won't happen.

It has been way too hot to cook, so I made Benedictine  and pimento cheese for Marty.  I can't eat the Benedictine, which I love, because of the raw ingredients.  As for the pimento cheese, chemo taste buds hate mayonnaise, so it tastes awful to me.  Two of my favorite foods, and I can't eat them. Peanut butter seems to taste OK and is my food of choice.  I have had bacon and tomato sandwiches.  We blanch the tomatoes and peel them, then they are safe for me to eat.

I don't feel bad, just really tired.  I napped this morning and plan another nap for this afternoon.  I am doing really well and about to mark a big anniversary.  Next week will mark one year since the tumor was found.  And I am still here.  Thank you to all who hold me in their prayers and who have helped get me through the dark hard times of the last year.  Hang on and watch me go for year two.  We can do this!


Friday, September 4, 2015

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.