Hospice Patient

Hospice Patient!

Last week I signed on with Hospice because I was having so much trouble getting my meds right and on a good schedule.  To make a long story short, after calling my sister, Joyce, early one morning for help, the doctor, Joyce and I decided that would be the best solution.  And it has worked!  I’m much more lucid this week and not as weak. 

Hospice has so much to offer, besides the RN’s they will provide home health aides to help you bath or do some light house work. Also, volunteers to cook meals or do some light housekeeping.  Many things that I don’t necessarily need right now but may down the line.

Everyone keeps telling me that I need to let other people help me out so I’m trying to do just that.  No matter how hard it might be. 

Really, I can’t do much myself anyways!

Breaking News!

It’s been awhile since I’ve updated this blog, I guess since everything is pretty much status quo.   

Well, except for my hair.  There is more hair!  Dark hair on my head, not red hair, dark hair!  More hair on my face thanks to dexamethasone (the steroid).  Also, annoying hair growing on my ear lobes and upper lip.  Nice fine blonde hairs giving me a little beard and whiskers on my chin.  Wonderful.

I knew this time would come when the hair fell out of my scalp with the chemotherapy treatment.  I think, to be specific, the drug Taxol is the culprit.  Ugh! How awful to have no control over the hair on your head.   Well, I guess I could have had control over it and stopped treatment altogether.  But I made an agreement with myself to do a chemo treatment and I knew this was a side effect to expect, but it was still one of the most difficult things I have done in my life.  Now it’s growing back and I can’t just be happy about  it.  It’s growing now in so many places I never thought about.  Much of it due to the steroids.  

I’m trying to focus on the hair on my head.  DARK hair on my head!  How funny.  I was hoping for a change and I got it!   Pretty far from the cornsilk color I was hoping for though.   I think it’s going to be straight and not curly hair too.

I finally did something I’ve been thinking about for awhile and bought a Kindle this past week.  I enjoy the size of the Kindle, it fits so well in my hand and is so light weight that I can hold it for long periods of time without needing to adjust the pages or my hand or whatever may be bothering me at the moment with a book. It’s been really useful when lying down I have to admit.  Best of all there are no hard copy books to store somewhere never to be seen again.  I’m really enjoying the Kindle and at the moment I’m reading the new biography about Walter Cronkite.  

Breaking news!  I have a disability retirement date of June 9, 2012.  That will give me a total of 28 or 29 years working for public safety agencies in California starting with the Riverside County Marshal’s Office in May of 1983.  However, in 1984 I moved over to the Riverside County Sheriff’s Office and from there moved to the Riverside County Fire Department in 1987.  After a nine month break from full time work, in 1990 I started work with the San Jose Police Department and spent eleven years with them until 2001 when I changed agencies – again! – and went to work for the Placer County Sheriff’s Office in Tahoe City.  That was almost eleven years ago and it’s 2012 and I’m retiring with a disability retirement from both Placer and San Jose.  

After the surgery - more perspective to gain

Good news this week!  My hemoglobin counts are high enough that I don’t need a blood transfusion.  It’s breaking my every two week schedule – yay!  As I go through the next week I’ll just keep an eye out for symptoms that make me think they’re too low and go back in for more labs.  Time to celebrate now though!  Okay truth is I’ve been forgetting that.

I was reminded yesterday that while I wait to see if the nerve pain is going to get better, the vertrebroplasty (filling the L3 space with a “cement”) was accomplished and my L3 vertebrae should be strong – stronger than prior to the procedure/surgery and should not be in so much danger of causing problems down the line.  Prior to this I was in danger of fully fracturing my back in that area  and losing control of my bowel and bladder. 

Pain control is still an issue in my left hip and back.  I still use the walker to get around the house and getting up from sitting is becoming a little bit more of a challenge.  I do best from seats that are higher or where I can use my arms to help propel me up. 

Really, I guess, I’ve been focusing too much on the pain still being the same and the fear that decompression of the nerve hasn’t happened - and wondering if it ever will.   

---------------------------------------------------------------------------------

How should we be able to forget those ancient myths that are at the beginning of all peoples,
the myths about dragons that at the last moment turn into princesses; perhaps all the dragons
of our lives are princesses, who are only waiting to see us once beautiful and brave.
Perhaps everything terrible is in its deepest being something helpless that wants help from us.
So you must not be frightened, dear Mr. Kappus, if a sadness rises up before you larger than
any you have ever seen; if a restiveness, like light and cloud-shadows, passes over your hands
and over all you do. You must think that something is happening with you, that life
has not forgotten you, that it holds you in its hand; it will not let you fall. . . .

Rainer Maria Rilke

 

After the surgery

It’s been a week since my back procedure and about time to write about it!  I still like to think of it as a “procedure” and not surgery!  My sister, Stevie, has been here taking care of me since I was released from the hospital just the next day (Tuesday).  The first few days I think I was still under the influence of some of the anesthesia, and I did not feel real bad, however later I did find myself upping my pain medication more. But don’t worry!  I had permission in my release instructions from the hospital to do that.  Now I’m just back to trying not to give myself a hard time about there still being pain.  This next information in quotes makes me feel better and was at the top of the Post-Operative Instructions I received:

“Your nerve was under pressure before surgery. Even though pressure has been removed the nerve can remain irritated for a period of time which varies with each person. You may notice a change in your initial symptoms or changes in sensation.  Do not be alarmed, because given enough time the nerve will generally recover, pain decreases and sensation improves.”

If we go by the pain, my nerve was under pressure for months and months, so with this I can see why it would take awhile for the pain to decrease. I am still about the same as prior to the procedure and can get up and down from sitting, walk very short distances, and sit on my walker for a little while rolling around the kitchen.   Still find myself lying on my right side instead of flat on my back though so I intend to start working on that.  Is it laying or lying?

Looked it up, okay I lay myself down on the bed and lie there on my right side.  I think that's right. 

  

Posterior Microlumbar Left L3 Hemilaminectomy & L3 Vertroplasty

Its been awhile since I have added anything to this blog.  Pain control is at the top of my list for excuses, but mostly I have just been waiting to have all the pieces in front of me so I can present them in some kind of legible form.

Wednesday I got the go ahead from the insurance company for back surgery, or to be more accurate, Posterior Microlumbar Left L3 Hemilaminectomy & L3 Vertroplasty.  What a mouthful huh?  Basically the surgeon will make a small incision and using microsurgery shave away some of the bone of my L3 vertebra and maybe some of the L2 and L4 above and below it.  Then he will inject a cement like substance into my L3 vertebra to stabilize where the tumor has destroyed the bone.  With that vertebra being stronger to hold my spine up and room made for the nerve endings the idea is pain will be a whole lot less!  Yes.  I can go for that! 

Surgery is scheduled for Monday, that’s tomorrow as I sit here typing this.  Whew, I guess as soon as I hear I can do it - I don’t mess around.   Joyce and I saw the anesthesiologist/pre-surgery people on Friday and so far all I can tell they’re worried about was my blood potassium level being low then.  Hopefully that is going to resolve itself over the weekend and not be a problem.  This procedure is usually done on an outpatient basis for most people, but the doctor has told me they will keep me overnight because of my underlying health issues.

Best of all, of course is, my big sister, Stevie, is coming to take care of me!  At this point we don’t know how much care I’m going to need, but it sure is nice to know she’s going to be there to help Joyce and me and all of us (I mean, what are big sisters for, anyways?)  J  Big Smile. It will be so good to see Stevie,  she took such great care of me last summer when I was going through that radiation treatment.  Like Joyce and Sherry, she’s a star. 

What has become my bi-weekly blood transfusion was done on Thursday so I should be strong enough in that area for this procedure.  Let me take this time to, once again, thank all the blood donors out there.  I hope you all know what a difference you make in so many people’s lives. 

I guess that's about it.  Thank you for reading my blog and I will try and update how it all went next week.   After a hospital stay I might have a lot to say!  haaha... This will actually be at the new Scared Heart Medical Center in Springfield and all their stuff even still looks new!   

Little bit of medical history

"I have learned in recent years to be acutely aware of every blessing that comes my way and I have learned to send up a prayer of thanks for every little one. I recognize and see them everywhere in my life."

 

For those of you that don’t know my history I’ll try to tell it as briefly as possible. In 2004 after many years of pain in my arms and abdomen, I was diagnosed with a rare autoimmune disease called Takayasu’s Arteritis. We found that over a period of at least 18 years, my aorta and several of the major arteries off the aorta had been damaged or destroyed by this disease. The subclavian arteries to both of my arms, my left vertebral artery to my brain and the celiac artery in my abdomen were all blocked and useless. However, make no mistake about it, our bodies are true miracles and when something like this happens, we grow collateral vessels, vessels that lay close to the originals and take over where there are blockages.

Control of my blood pressure and the status of my aortic heart valve became the biggest issues. I spent a couple of years on a variety of drug therapies, including low doses of chemotherapy medications, to stop the inflammation of this disease.

May 2009 I had open heart surgery to replace my aortic valve and at the same time a large tumor called a thymoma was removed from my chest. A very rare tumor. When describing it the surgeon called it the size of a “large hamburger.” It was declared a benign tumor and thought to be completely removed with no problems and an 8-9% chance of it recurring.


A couple weeks ago I found out that the RARE thing has grown back and is now twice the size or at least twice as long. It's pushing aside my trachea, sitting on my heart causing it to labor a little bit harder, pushing on my lung, some lesions are metastasized in the lining of my lung and its causing fluid in my pleural cavity. It's an inoperable tumor. Oh. We found it because I went to the doctor about a small lump in my neck and it turns out that lump is the tumor pushing up through the space between my collar bones.

This sounds really bad, huh? I'm still walking, talking and breathing. I do have some troublesome symptoms, but it's still one of those things that to look at me you wouldn't think I'm sick. In fact, I don't even get to be off work. I'm in the process of frustrating my doctors, pissing off the technicians and being an overall pain. (I make myself laugh when I say that, it's so close to truth) The disease doesn't scare me half as much as navigating the medical system. The stories I have to tell already (about the medical system)…My sister thinks I should write a book.

But deep breath. We now have a game plan with  Octreotide. Three injections once a month and then another scan to see if it’s working. I’ll start next Thursday so that any bad reaction I’ll have the weekend to recover.


I just shared this in an email with my new found Cousin Bonnie, and I think it’s worth posting here too: "I have learned in recent years to be acutely aware of every blessing that comes my way and I have learned to send up a prayer of thanks for every little one. I recognize and see them everywhere in my life."

This too, I’m sure is a blessing, a lesson, a chance to grow. I’ll try not to kick and scream too much while doing it.

__________
And and update

Thymoma: 80-90 Percent Update
After just six weeks, the drug therapy is working extremely well. CT Scan yesterday says it all.
“…with the tumor burden decreasing by 80 to 90% when compared with prior CT Scan”



The doctor says we’re going to continue to “hammer away” at it (clearly with the hammer metaphor he’s used to those tumors that don’t respond like this) for another six weeks or so and check again.
>
________________________________


Bone mets update:

There's no easy way to put this out there and I've decided to set the good natured joking aside and let you all know the update on my cancer of the thymus. An MRI scan shows that I have metastatic tumors in my L3 verterbre, some surrounding tissue and pelvic bone. And a CT scan shows that the original tumor has returned some to my neck/clavical area, it's broken through the treatment. Ohhhh yes...my left hip and thigh hurt like crazy when I'm up on them so I'm set up with some pretty good narcotics for pain and I'm going for a consultation next week on radiation to those tumors for pain control. There have been a number of very helpful people driving me to appointments, keeping me busy with visits and doing some grocery shopping for me. I really appreciate all the help and believe me plan on using everyone I can get for help :) I need to make a chart next to keep everyone straight! Oh I do want to kid right now. Please feel free to ask me any questions, I'm totally open and there is no way to cover everything here. I'm being scheduled for a consultation at Stanford some time in the next month or so and most important, the weekend of Aug 20th I'm gathering with my family for a great celebration of life in Vancouver, WA. Very much looking foward to that!
Love to you all, Linda  

Culture Shock circa 1979

**STOP** if you're looking for Thymoma information on this one. Instead, this is part of my early life prior to Thymoma

Culture Shock?

Before flunking out during my second year of college I decided to quit college instead.  Well okay,  I flunked out but managed to escape the bad grades by quiting first.  Does that sound right?  That was over 30 years ago but I think it went something like that.  My first year of college I had spent at the Riverside Community College but for some reason I thought I was ready for my second year at Cal Poly – Pomona.  I was wrong. 

That decision though, did lead me to the beginning of a life adventure I wouldn’t give up for anything.  I had seen the flyer somewhere at the community college and I applied and was accepted to the California Conservation Corps. It was a program, modeled after the Civilian Conservation Corps of the depression era, working outdoors doing “conservation” projects around the state.  That job taught me a lot.  A lot about myself and about other people.  The CCC also brought my good friend, Judy Stangelan, to my life.  Judy and I first met while at the month long ‘boot camp’ for the CCC in Murphy’s, California.  At that point in time there was nothing in Murphys, that I remember, except the old mental hospital, where they now housed nothing but hundreds of us young eager “conservation” minded individuals. 

Our work turned out to be things like clearing fire breaks.  So, for instance, we learned how to handle different fire fighting hand tools.  We cleaned up campgrounds in the spring and filled sand bags for flooding waters in the winter. We helped to build running trails in public parks and plant baby trees in burned out forest areas among many other service related jobs.   

Our housing was dormitory style and the first CCC camp I was assigned to our sleeping areas were defined by partitions, lockers and old dresser drawers.  The State had moved the residential minimum security men’s prison from our camp and moved in us mostly white, middle class, ready to save the world, youngsters into the facility.  It took the neighbors awhile to adjust to seeing us walk and drive down the road when they were so used to being on the look out for escaped prisoners!

My time with the CCC was only one year.  April 17, 1978 to April 17, 1979 funny how I remember the date so well.  It became a kind of talisman date for me over the following years.  That was the extent of my contract with the CCC, just one year then you were ready for the world.  The first part of my year, after boot camp, was spent at the Butte Fire Center (and tree nursery) in Magalia, California.  The second was at the San Luis Obispo CCC camp located at the old National Guard Armory located about six miles between San Luis Obispo and Morro Bay.  Beautiful area. 

After a year with the CCC I thought I was invincible. The self confidence I felt then has never been matched.  There was nothing I couldn’t do.  So at 21 years of age, I drove my little Chevrolet Chevette alone across the country on a five day trip to Pittsburgh, Pennsylvania.   Stopping at cheap motels every night along the way and even though I stuck to the highways, thoroughly enjoying myself crossing the USA alone.   

In Pittsburgh I lived with my cousin, Martha Speer, for a couple months.  The plan was that I would get a job and we would be roommates and then….well I don’t think we had a “then” planned.   I just took it day by day and never found a job!  Martha on the other hand, had a secretarial job she went to every day at the University of Pittsburgh and a regular paycheck and responsibilities she took seriously.  The job I eventually did find for the summer was as a camp counselor with a Girl Scout camp near Franklin, Virginia. 

Martha was reminding me the other day about the two weekends we spent in Washington DC during that time.  The first we traveled as tourists just wanting to see the Capitol.  While there we also saw a flyer advertising a 'No More Nuks' protest rally with Jane Fonda the following weekend.  Yes, we marched with Jane Fonda in an anti-nuclear protest. 

I had been a Girl Scout for many years of my life and with the  recent outdoor experience with the CCC I felt I was  fairly well prepared.  Being young having a ridiculously positive view of the world, I would say I was over prepared for the job!   Until I met CULTURE SHOCK.  Wow.  What a learning experience that was.            

The first introduction I had was when one girl scout that came from the local area said that she was the only 13-year-old girl in the whole county and while I didn’t think about it much at the time it did stick in my mind.  Hmmm....county population must be pretty small.

I was assigned to be the bicycle counselor for the summer.  Only because they had no one else for the job.  The only thing I knew about bicycles was riding them.  Hey, it’s still the only thing I know about bicycles.  One of the programs for the summer camp was for a group of kids to do an overnight ride from the girl scout camp to the historic Jamestown settlement about 20 miles away.  The overnight stay was at the summer camp for an Episcopalian church.  Again,  something I knew nothing about.  Lets just call me a free spirit Californian. 

Our overnight trip started off well and  our first rest stop  was a designated park that  we found easily, but later in the day when we needed another pit stop, I had trouble finding a place.  Except for the high school that was open and had kids wondering around the halls, unfortunately I couldn’t find the bathrooms.  I asked a couple of the girls there for directions and was met just with blank stares and no response.  In the end we left the school – I don’t remember where we finally found to relieve ourselves. 

I also don’t remember how long it took me to realize that the “only 13-year-old girl in the county” mean’t she was the only 13-year-old white girl in the county and girls we asked directions of at the high school were black girls that had no intention of speaking or helping me in anyway. 

On one of my days off from the camp, in order to get practice riding a bicycle again I rode into Franklin to visit the laundry mat.   Now being familiar with laundry mat etiquette, I saw that the dryers were full when my wash finished and next up to use the dryer was an older black woman so, I settled in with a book to wait.   Again culture shock appeared  in the way the woman would not hear of me waiting for her.  No, no, no I should go first.  She would not dry her clothes first before me no matter how much I insisted!   Wow.  What a lesson for a 21-year-old girl from California in 1979. 

It was after that summer that I made my way back to the community college in Riverside and earned a two year degree before taking off on my next life adventure.  College since then has been hit and miss.  I spent a couple terms working at a "business administration" (read Secretarial) courses and I sometimes think that if you added up all the college credits I have accumulated over the years I would probably come up with enough for a couple four year degrees in there somewhere.  Hmmm... focus has never been my strong suit.