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. 

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. 

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. 

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. 

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!

 

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.