Second Chemo

This week was more regular to me.  I did somethings, but stayed home more.  That seems to mean I didn't do much, but that isn't true.  It just was a different doing.  Last time I posted pictures of my patio, but you can't get the full flavor of the sound of water, chimes and birds.  I left my little kitchen table on the patio for now because it is easier to work at the table and I like it outside.  My family will come at Easter and I think the patio is the place to be.  Even if it is cool, the heater will make it comfortable.  This is a 1 1/2 minute video of my patio  This is the link to You Tube  I don't know what I did wrong, but if you click on it the video is listed and it will get you there.

My Patio - My Sacred Space

I had my last class with Norma Neil (I believe I messed her name when mentioned earlier).  Did another tree, but I included the plants around it, but left the building out behind it.  Norma said she would have other classes in May and June.  I hope to sign up for them.  I have found them to be very therapeutic.

I had a scary incident I believe on Tuesday night.  Around 3 am, there was a loud rap (3 of them) on my front door.  Very unnerving.  No one called out, so I can't imagine it was someone I knew.  No one said they were having any problem so I wouldn't answer the door.  It took me a while to calm down and go back to sleep.  I have an alarm now because a friend said that as single women we needed to protect ourselves. After that incident, I'm glad I did it.  I saw the next day there was a homicide one street over and up about 9 or 10 blocks.  No idea if they are related, but when something like this happens, it is hard to avoid seeing possible relationships.

After my art class, while driving home, Michelle Singletary who works for The Washington Post as the finance columnist spoke on Hear and Now an NPR program about preparing for your death.  Her mother was in the hospital hanging on to life after being in a horrific fire.  She was unconscious and her daughter was trying to take care of her affairs.  Her mother was uncomfortable doing this.  As a result, family had conflicts on what they should do and this has created even more stress than what they would be dealing with if it was only her health.  So I think it is important to get these things down and share them with people you trust.  By the way, it will not always be family, and that is okay.  Make sure you do an Advanced Directive.  This says who is going to make the health care decisions when you can't.  Talk to them about what you want also so they have a clear idea of what to do.  Hospitals have these forms, but you can download them from the internet.or buy at a local stationary store.  They cannot advise you as to what to get, but if you are comfortable with this, you'll find what you want.  If you have the money, the best idea is to see an attorney, because you also need to do a will - who will get what.  If you don't specifically state this, the state you live in will decide, AND, much of whatever assets you have can be eaten by attorneys fees rather than it doing to those you desire to have it.  You need to pick someone to be the executor of your estate.  This is the one who will be responsible to making sure that your wishes are followed.  Talk to them to make sure they are willing to take on this task.  Not all states recognize common law marriage.  California does not. Keep this in mind if this person is important to you and you want to protect them.  I have also taken care of most of my funeral expenses because Paul and I had not discussed this.  He was uncomfortable with this subject too.  It will not cover everything like obituary, flowers, someone speaking, etc.  But I have taken care of the most costly parts.  Financial Power of Attorney is for while you are still alive but not competent to take care of you bills, etc.  My bank would not accept this so I spoke with a friend and asked if she would be willing to play this role when the time came. She agreed and we went to the bank together and took care of this.  Now there is one thing I have not taken care of and that is a Letter of Instruction.  This states where everything is, what are the passwords to deal with whatever you have on line, what you want done at the funeral and who to contact and how to contact them.  My grandson Billy Lane was so worried about offending me by asking questions and I realized he would need to know and had a right to know.  So this is the task I have before me and I will be working on it.

I had the Herceptin on Friday morning.  I was told to take a Zyrtec and two Tylenol before coming in.  I did. I felt tired, but I don't think it was from lack of sleep.  My blood pressure rose a little.  I was going to go to Art for Healing to work on my art, but I laid down instead.  I also really got very cold and when I got under the covers it wouldn't warm me enough, so I climbed into a bath with bath salts.  My body warmed up and then i crawled back in bed.  Leaving the house was by my garage to go to dinner so I wore a coat thinking it was chilly.  It wasn't.

My good friend Janet Seinturier and I met for dinner at The Mark.  Very pleasant, the food was good, but it is a very, very loud place.  That is a little hard.  I had decided to use Valet parking because I have had more back issues this week.  As we are standing there, the band was playing some music and I was making "moves" to it.  A couple of young women eating outside (yes it was warm enough) started laughing at me.  I told them my kids were embarrassed by my dancing, but my grand kids were not.  I had a daughter-in-law take pictures when I was dancing to shame me when I would see them.  I told her I don't shame so easily. Dancing makes me feel good.

I picked up a couple of things I'd like to share.  One was "5 Regrets of the Dying".  It has to do with living while you are hear.  It's a good lesson.  It is from  lifebuzz.com.  It was compiled by Bronnie Ware while she was working in palliative care.

5 Regrets of the Dying

And the second one is an audio recording of a man interviewing doctors and their thoughts on end of life treatment.  I worked in hospitals for almost 17 years so I saw what happened to people and it definitely gives me pause in my thinking about having these things done to me.  It is worth listening to. I saw this on Upworthy.  Rollie Williams did the interviewing for Radiolab.

The Way Doctors Think About Death is Pretty Different From The Way Their Patients Do

I worked in hospitals for over 17 years as a social worker and responded to all codes (what they call it when someone stops breathing).  Most of these were rough on the patient.  I had decided I didn't want this.  Now I waffle on this, but I think there will come a time that I will say "no" again.  My role was support to family and friends and often times calling them when this happened if they weren't around.  Very tough.

Okay, I think that is enough.  I'll see you next Sunday.  Thanks for reading.  Rachel

Slower Week

This week has been a little slower for me, but I have to do that periodically to recharge.  One thing that I use as an excuse about not getting my home cleaned and straightened is that I have too much to do.  Perhaps, but I've been using that excuse this week and I can't keep going like that.  My step-mom Kate came on Friday and that is a real incentive to clean up,  Actually, every time I have something at my home, I do cleaning and straightening.  It's really good I'm not a complete hermit.  My patio is looking and sounding good.  It is my sacred space and where Kate and I spent the afternoon on Friday.  We had salads that I picked up from Trader Joe's and Kate brought fruit tarts.  There was the scent of the blossoms of citrus trees in the air.  My fountain and chimes were going, plus I had forest sounds, mostly birds coming out of a small speaker I hid.  This has taken a while to get it where it is, but I'll probably adjust things more to make it balanced.  Kate brought some beautiful Daffodils which we set up on the patio where we were.  We brought the table from the kitchen out for us each to work on our art work.

My Patio - fountain, chimes, heater for cool days and nights, soundscape of birds and other forest animals

I also met with my daughter Shelley.  I so enjoy spending time with her.  We went out for brunch and talked about family things, art and taking care of ourselves.  We will do Easter at my home because I think it would be pleasant on the patio even if it is cool because I have a heater which will knock off the chill.  I don't believe it will be too warm.  It is still early.  Shelley, Alyssa and I are going to do a weekend trip to Sacramento in the near future leaving early Friday and home by late Sunday.  No specifics yet, but she grew up there and needs to see where she lived, besides I like the area.  I'm sure there are other things we can do.

My granddaughter Kayla had asked if we would go to Jeff (my son)  and Stephanie's home around Easter. They are not sure they will be in town and their girls won't be coming back from college. The kids would really love to see the girls, so we will have to make another arrangement to see them.  Kayla and I went for a drive up Breckenridge Road.  I've always wanted to do it.  I had a writing class in the afternoon, but I completely lost all sense of time as we drove up that road.  It was all paved, though not always in great shape. It was beautiful and the air smelled great.  We came out south of Bodfish a small mountain town and stopped in Kernville for a late lunch before getting home.  We left in the morning and we got back about 4:30 pm.

I had my last class with Nina Landgraff at Bakersfield College.  She will be offering another class in the fall.  If it is the same time, I can do it.  Otherwise I won't be able to because my class with Carol Bradshaw at The Bakersfield Art Association is going to be from 1 to 4 pm.  Nina's course was 5 weeks long and we covered a lot of territory in that time.  The last class was drawing animals.  So I drew a lamb.  Very poor job, it has almost a human head.  I have the eyes forward and it's eyes are on the side of the head.
Then a drew an oryx and that one worked.

I received a couple 

I received a short video and an article which I felt reminded me of issues I dealt with when my parents and then when my husband died. I think saying the things you would like to say while they are alive is a lot better than fretting that you didn't after they died.  We don't do all the right things.  We are human and that is just what we do.  Our relationships with people also affect how much we are willing to share, but I feel so much better telling my dad that I could not have had a better dad.  He was there for me, he offered guidance and support and he was very gentle.  I was fortunate to have him.  My relationship with my mother was very strained and is another story, but I tried to the end to get her to see that I did love her and I wanted her to love me. But I did the most I could do, so I don't have guilt around what happened.  I really didn't want to believe my husband was dying and seemed to play down issues more than I wish I had.  It wouldn't have changed what I did, but maybe I would have been even closer to him at the end.  One thing though, it doesn't matter if you are real close or not.  It still hurts unless you have closed yourself off to feelings.

Here a son, Jason Rodas shares with his mother what she has meant to him.
http://m.wimp.com/finalmoments/


This is the article with what to consider when your loved one is dying, by Noah Michelson, published in the
Huffington Post
http://m.huffpost.com/us/entry/4936843?ncid=fcbklnkushpmg00000063

Thank you for reading these, and I hope you will share what you want to hear and what are your concerns.  I'll see you next Sunday at 9:00 pm.    Rachel

Having a Life

Since treatment is once every three weeks, I'm on break from it. There were no side effects having Herceptin.

                                     
                                       I still get questions about my vacation with my step mom

 

Kate to Japan in November.  I tried to set myself up to deal with my back pain to avoid pain. I bought a cane that can be a seat,  I took my Backjoy Relief, wore my back brace and had my pain medication. These will help IF you use them. A part of me was in denial that I needed help. When I went without these aids, I paid for it with limiting pain. I just had to stop. When I used them, I could go a lot longer and  do much more than without them.

I was struck by a few things different than Americans. They appear to be more oriented to the group than the individual.  Though this was different, there was much more cooperation than we might have here.
Kate and I were taking a public bus to go to a museum.  Kate said to get off at the exit we were stopped at.

The bus was jammed with people. We got on at the back of the bus and there was no way to walk to the front to pay. People were pushing against me to keep me from getting off. Finally they let me go. I got off and went to the front door to pay. I believe they thought I had no plans on paying. They have very little crime. They have police booths every couple of blocks in the city. They end up being very helpful in answering questions.   People were very generous in helping where they could.  When we went to breakfast in the hotels, they had lots of veggies in the morning. That is the opposite of how I eat. Not that there  were no veggies at lunch and dinner, but much less.   I loved their ceramics,  artwork and paper making. Though they have constructed homes similar to ours, they have homes using rice paper as walks and in some more remorse areas, there are roofs made with packed reeds.   They are minimalists when it comes to furnishings. In their homes. They looked like they were moving out or moving in. I think they would find my home overwhelming.

Their parks and gardens are really beautiful. Very artistic in how they used water and rocks as a part of  the view. Their toilets are so beyond what we have. They have controls on the side to heat, clean (like a bidet), some have blow drying, odor control and flushing water sound effects with volume control to cover bathroom sounds. In public bathrooms, the heated seats and sound effects were typical.   When it was very cold, those war seats were very appreciated.  When I got home I looked up what it would cost here. They ran from $5000 to $6000 not including installation which would require electricity to it.

Saw The Sixth Floor Trio through the Bakersfield Concert Series with a friend.  When they came out, they looked so young, but their performance was top notch. They played piano, clarinet and bassoon. The bassoon player also played the violin.  The style varied and had a lot of improvising.  They seemed to tie in "the peoples" music into sophisticated pieces. I highly recommend them. A real treat!  It seems to me most of the audience is older and I wonder if younger people will attend these. Now they will be older some day and perhaps it will appeal to them. They are great concerts a reasonable price, especially if you buy for the whole season.

I am back to attending more sessions at Art for Healing at Mercy Hospital. I went to one session where we made faces out of clay that will eventually be used on a wall. It will look great.  My face is the one on the left. Another session I attended was on drawing trees. Lead by Norma Peal. After some brief instruction we were led outside to draw a very old oak tree. I was completely overwhelmed and then decided what the heck. This is my drawing using charcoal and pastels below.  All our trees looked so different. Many people in this class are dealing with some issue. The process of doing art seems to help in letting go and reduce our stress levels.   I'm also going to the open studio offered two times a week where I work on my art assignments from  Nina Landgraff from The Levan Institute at Bakersfield College and with Carol Bradshaw at The Bakersfield Art Association. Nina's class ends next week (darn!). I will look for what she may offer in the fall. Carol has been out on medical for a few weeks. She'll be back mid-April. I need her push and support. She's a great teacher. What is very interesting is hearing how different people may present the same topic. There is a plus to hearing different views.  I love it all.

I went to Hart Park yesterday with my granddaughter Kayla Kline.  I'm working on a portrait of my friend Barbara Long's dog Patti.  I'm almost there.

Next week I want to share a connection of an article written by Noah Michelson "5 Things I Learned from Helping My Dad Die".  It is important because life is important and the death of someone close to us has a big impact on us.  Having lost my parents and my husband which I knew would happen really brings this out.  Of course other losses and are accidents, suicides and murders also have their effect.    I would like to talk about this.

Start of Treatment, Benefits of Kaiser Permanente, friends

I had the MUGA scan.  All went well and I started the Herceptin on Thursday. No side effects that I noted. I brought my Kindle and my iPhone which kept me in touch with everyone and read some. I was very tired due to reading too late. So that was all I was noting. I'm so happy they were willing to adjust the next date of treatment so I could attend a class on drawing trees. I can't say how much drawing has become therapeutic in coping with stress.

There were a couple of important events this week.  The Vagina Monologues was done at The Spotlight Theatre as a fundraiser for the Alliance Against Family Violence and Sexual Assault.  It was well done and brought women's sexual issues out in the open.  The documentary The Red Tent: Things We Don't Talk About was shown at The Art and Spirituality Center which was about the start of Red Tent groups to support women.  Very enlightening.

 I have to say I am pleased with my medical care.  I have Kaiser Permanente and I feel they take issues seriously and are responsive to my needs.  I have had people suggest that I change coverage, but that doesn't appeal to me at all.   I like the system.  Generally things move quite fast if you have an appointment or it is an emergency.  Otherwise you may have to wait.  I also like that I can order my meds on line or the phone and most of them are mailed to me.

I have been paying almost $700 a month for my insurance, but I have few other outlays to pay toward my medical needs.  I applied for permanent state disability and it was just approved this last week.  My outlay should drop.  I'm 64, not quite Medicare eligible.  It is that in-between state.  I think it will be better even when I'm Medicare eligible, because there are more out of pocket expenses if you don't have a program from an employer.

 I know there will come a time that nothing more can be done, but as long as I feel well most of the time, I would like to be here.  I have family members who have said "no more" (such as my husband, father and mother), so I know there will definitely be a subjective decision based on how I feel that it is enough.  I seem to be doing okay with this thought.  I think that talking, writing and thinking about it helps to put it all in perspective.  What is fascinating to me is that my cancer does not cause me pain.  The pain I have related to it can be chemotherapy and surgeries.  The Herceptin is not a problem, no pain.  If treatment was short term, I might go for the big guns, but it's not.  This will be every three weeks until the cancer returns or until I die.

I do have pain, but it is not related to the cancer.  A year ago January I fell taking the trash can out to the curb.  I have a compression fracture at L2, the lumbar area.  There are times I'm pain free, but the more I do, or if I really push myself, I have pain.  I have tools that help.  I have a Backjoy Relief that I purchased at Bed Bath and Beyond.  This gets your skeleton in the right position when sitting.  That makes an amazing difference and I can sit a lot longer when I use it.  I also bought a lumbar support at a drugstore.  It has laces that you pull to give you more support.  When I first was injured, I was given a very big contraption to use.  It helped, but it was so limiting.  I'll hold on to it in case I need it later.  And, I take pain medications.  I can't seem to get away from it, though I have reduced it dramatically.  It does not affect my thinking or functioning, so I will continue to use them.  At such time that this does not work adequately, I will get a consult from Palliative Care to see if other medications would work better.

So how to I keep busy?  I pace myself.  I have two art classes.  Each is a different style in drawing.  I love them both.  One will end in a couple of weeks.  I am hoping she will be teaching drawing at a later time.



  I go to Art for Healing events.  I meet with friends and family for meals.  My growing up saw that meal times were when we talked, so they are still very special to me.  I belong to a Red Hat Group that meets monthly.  We go out to dinner at various restaurants in town.  At the last meeting one woman said "you're the healthiest sick person I've ever met."  Ha!  I agree.  I'll keep pushing forward.  I am an amateur photographer and enjoy working with Photoshop Elements 12.  Especially for shots from my trips.  I travel with friends and family.  My last trip was with my Stepmother to Japan.  Great trip.  I read a lot.  I don't go anywhere without a book.  I can tolerate long lines as long as I can read.  I'm so fortunate to have wonderful friends.

Marykay has been in my life for 35 years.  Both of us have been through a lot, but we come up fighting.  She took me in when I moved to Bakersfield and helped me find my own place.  We worked as social workers together in a hospital early in our career and have maintained our friendship even when it might only be two times a year.  She is a wonderful artist and was an inspiration to me as I considered what I would do when I retired.  You saw Michael's picture in last week's blog.  They are an amazing couple who give a lot to others.  I asked Mike if he would speak at my funeral based on something I read about physicists.  He read it and agreed.  It means a lot to me.  Her blogs are attached here if you would be interested in what she does.  I particularly enjoy the grapevine theme, but she has so many subjects she is very good.

Rachel Jerdin and Marykay Feit





Pictures done for class with Nina Landgraff

See you next Sunday at 9 pm PDT

Looking at Treatment

I had a wonderful visit with my friends and even visited with a sister.  Marykay, Mike and I talked a lot about what was going on for each of us and how others perceive how we are doing.  Those subjects will be integrated into this blog.

California finally had some rain, but it wasn't enough to change the outlook for needing to take probably drastic conservation steps.  I went in and out of rain coming home.  Summer will be the test here.

The day after I returned, I met with my oncologist who gave three options in treatment, one, do nothing; two, have surgery to remove the tumor when it is possible (depends on the organ and how extensive it is); and three, take Herceptin every three weeks for the HER2 positive part of my cancer and change the estrogen blocker from Faslodex, an injection to Femara, a pill I would take daily.  In the third option, it is for life or at least until the cancer shows up again.  I chose the third option.  Herceptin had no side effects that I could feel.  And, the Faslodex injections were painful.  Radiation is not an option because I had my lifetime limit.  He had preferred that I have radiation if it was possible.  I would not have minded if that had happened, because the only side effect I had was itching where the radiation was directed. That was uncomfortable, but livable.  It depends on where the radiation goes if you have more negative side effects.  The chemos I've had  I really resist are Adriamyacin, Cytoxin and Taxol.  If it was short term, maybe I would consider them, but it doesn't seem like living when you feel really bad all the time.  Have you gone through any of these and what sort of experience did you have?  Would you decide not to do something because you were so sick with it? 

I'm having a MUGA scan tomorrow to make sure my heart is doing okay to take Herceptin.  I will start the Herceptin on Thursday.  My oncologist is actually waiting for the results of a test being done on the biopsy to make sure that it is a go, but he feels it will be.

This is Mike and me while I was visiting him and Marykay this last week.  I can't seem to locate Marykay's picture but will post it when I figure this out.

My art classes and then practicing really keeps me grounded.  Perhaps next week I'll show a couple of pictures.

All is well here.  Hope you are doing the same.  Rachel