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.

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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. 

   

More on what is going on

First I want to give a big hug to all of you lovely people.  You have sent hugs, love, prayers, good wishes.  You have been fabulous at making me feeling loved and at feeling better.  Thank you.

I am going to give you all a little update on my exciting life.  My, my but I do have fun.  I seem to have a problem keeping my white blood cells at the right level, so I am getting an assist from technology.  Five days after my last round of chemo, I have gone in every day for 5 days to get a shot of Neupogen.(really only 4 so far, tomorrow is the 5th shot).  Monday they will do blood work to be sure it is working.  If all is well, then I can fight off infections and get on with the big fight against the cancer.

The next part is gross, so feel free to skip over it and say you don't need to know that much about my life.  Many things cause problems in life, and some are common problems that non cancer patients experience.  I am experiencing two opposites at the same time, constipation and diarrhea.  Didn't know one could do that.  It is awful, painful, and you don't trust your body's signals.  The pain is very much like giving birth.  The same condition from childbirth and the after effects of chemo is there to make life yucky,  hemorrhoids.  So today Marty bought me a present, a foam doughnut.  If you don't know what I am talking about, count yourself lucky.  At  least now I can sit without great pain.  Gross enough for you?

I did feel well enough to go to lunch with Marty today, I ate toast, one egg, and two pieces of bacon.  That is a huge meal for me.  Tonight Kirsten is bringing me an Italian Subway sandwich.  So a good day.

Again thanks for all the prayers and well wishes.  You folks make me happy and make me feel loved.

Chemo, round 2

I am not going to give you all the gory details of chemo.  What happens to  me, won't necessarily happen to some one else.  Very few do chemo without some side effects, and each time something different can/will happen.

The process is not that bad.  First I am given a huge amount of anti nausea medicine.  Then  I am hooked up to different IVs and sit in a nice recliner and doze, check email, read, whatever I want, gradually I just get tired.  Then they hooked me to the take home chemo grenade and we go home. 

That night, Tuesday, I was so nauseated, and I threw up several times.  That stunned Marty and me, I rarely throw up.  So it was an ugly night.  The next day my stomach was calmer, but still upset.  I took medicines and they sort of helped.  I slept  most of the day.

Thursday we went back to Kaiser to have the take home chemo removed.  They were concerned with the vomiting and nausea, so they gave me an IV bag to hydrate me and then a powerful anti nausea IV.  That helped, but was not a cure all.

Today I have slept most of the day.  I am not as nauseated, and no Code Brown yet.  That is the next big worry.   I hope tomorrow will be closer to normal and I will feel like eating.  Not much but soup being eaten so far.  I need more calories than that.

It has been a rough few days, but maybe not as awful as last time.  We will see how things progress.  This is more than a 3 or 4 day problem.

Your prayers are greatly appreciated.  Please add prayers for all suffering from cancer.  There are a lot of us out there.  I just heard a friend's cancer is back and has spread.  Prayers for unknown patients will help. 

Chemo Day, not bad, yet awful

The process of being given the chemo is not terrible.  You sit in a recliner and they keep hooking up different bags of fluids and medicines over a 5 hour period.  Before that they gave me a huge amount of nausea medicine.  I had two chemo cocktails at the hospital and they started  my take home one.  It is hooked into the port in my shoulder.  There is a little grenade shaped ball that hangs down and sends the medicine into me. 

I told them I can't sit long without ice for the back pain.  So they gave me some ice packs, but not often.  So the back was a big problem.  The reason they couldn't put ice on me is a side effect of one of the many chemo medications.  I will be very sensitive to cold.  Ice on my back will cause the muscles to cramp.  I am not to drink anything that is cold or has ice in it.  My throat will have spasms and I could choke.  I  must wear gloves because any metal will feel so cold it would feel like a burn.  Even taking something out of the refrigerator could cause a problem.

When I got home I was tired just being up so long and hurting.  I napped and then it was supper time. UGH!  The smell was awful.  The very same home made soup Marty had made for me and I had loved the night before.  I was so nauseated.   I made myself eat the broth and skipped the noodles and chicken. 

I was very upset last night, I didn't expect to be tired and nauseated so soon.  Maybe it was just me, maybe the chemo.  Whatever it is I walked around the apartment carrying a wastebasket with a plastic liner in it. And I will continue that for a long time I am sure. I have a barf bag in my purse, just in case.

I don't feel very funny today.  I feel teary and sad.  I want to waller in the unfairness of this.  I want to kick and scream.  I will pull it together.  But Marty and today's chauffer Kirsten said I am allowed to absorb all that is happening and just feel it.  Maybe tomorrow I will be perkier.

Biopsy Report

My oncologist just called with the biopsy report.  There are no surprises, it is cancer.  She told me what type, and it did not register in my brain.  It is the most common type and I am sure I will get a written report in the next week or so.

So now we have a real game plan.  Monday I will have the port put in.  Tuesday they will set up my chemo sessions.  I will receive two types of chemo at the infusion clinic.   I  will then receive a portion of one that will be slowly released over several days at home.  Then repeat.  This is the broad picture.  I will get more details later.  The first round will be for 6 weeks.  Each visit takes around a half a day. 

The plan is to stop the cancer and to hopefully shrink the mass.  Again odds are not great, but gonna try what is out there to fight with.  This may or may not make me sick.  A few people don't have much trouble with this type of chemo, but most do.  She is upping my nausea medicine and pain medicine.  After the port implant Monday, I can try different forms of marijuana. 

Please keep me and Marty on your prayer list. 

Bad Health News

In the past 6 weeks I have had constant back/rib, nausea pain, unwanted weight loss.  Tests have been run and the results suck.  I have a mass on my pancreas.  They can not operate because it is wrapped around blood vessels.  Right now I am going through some yucky tests to determine the spread, if cancer, what type. There is very little hope with pancreatic cancer.

Kaiser has been great.  They are getting all the information needed to help me through this and to keep me comfortable.  I am on nausea medication and Mr. Morphine for pain.  I also will be taking a marijuana drug to help my appetite.  Soon I will go to my local dispensary and get a medical marijuana card.  No standing on the street corner in California looking to score.  The marijuana will help with nausea, lack of appetite.  We can buy oils, cookies, make brownies, what ever I need to be comfortable.

Marty and I need prayers.  This is bad for the patient and for the caregiver.  Please share this blog with everyone.  Prayer works, and all religions welcome.

My close friends are circling the wagons.  They have already started driving me for blood work, to book group, etc.  Because of the morphine I can no longer drive.  Also Mr. Morphine makes me just a little slow reacting.  Brain thinks it and mouth goes Whaaaat?  I noticed I type and whole words are left out.

I will post as able.  I am begging Joe to post about weddings.  Not sure if I can keep marrying if in chemo.  When in chemo, they sometimes restrict contact with people. We are living day to day.  

There are a few upsides.  The only foods I am able to eat in a real size servings are lobster and filet mignon.  Marty is suspicious, lobster? Also if we do chemo, no longer shaving my legs.  We also will save money on hair cuts.

Yes, I will go down cracking awful jokes.  In my family you have to laugh to stand life.