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.   

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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.
>
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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. 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       

Where's the Gray???!!!

Being a Redhead all my life, I've almost been anxious for my hair to turn another color.  Gray for instance I've asked a number of people and hair care specialists over the years, but no one has ever had any real answer for me. So Red it has stayed - until Chemotherapy when most of it fell out.  Joyce finally took pity on me and shaved my head when the hair had gotten so thinned it was looking really really bad.  Then I looked much like my baby pictures with my cute little head.

April 16, 2012

Big news!  The hair on my head is growing!  I haven’t been sure if it has or it's just the straggly stuff that was left after falling out.  For the past week, since she’s been here, Sherrys been telling me it’s growing but I figured the real test would be when Joyce got back from vacation after not seeing me for more than a week.  She confirmed it yesterday when she stopped by.  Funny thing though, it’s DARK hair.  Sherry says sometimes she sees a red tint, but in the mirror (and to Joyce) it sure looks dark.  This will be interesting to see what grows. 

A couple weeks ago I did notice the hair on my face certainly has started growing.  I grew in a cute little mustache, in fact, before shaving it off!  Off, off facial hair!  Back to plucking out those chin hairs too!  Oh my.

Dilaudid - I like it. Making up my mind about the Procedure

Does the title tell it all?  Dilaudid, also known as Hydromorphone and a long list of other names is my new favorite drug.  I saw Dr Mones, the pain doc, yesterday and he changed things up on me so it's brand new to my system right now.  Boy, does it have me feeling good though! I think I'm a little high and that makes me chuckle.  (well of course it does if I'm a little high )
And the pain in my back, hip and leg are much much better, I suppose I should mention that part.  :)

Joyce and Dave went to New Mexico this week for vacation, so one of my other sisters, Sherry, came to babysit...errr...I mean help take care of me.  It is so nice to have family ready and willing to help me out.  Sherry and I even got to make a trip to Vancouver, Washington to see some of our 'new' family.  Uncle, Aunt and a couple of the cousins we knew nothing about until less than two years ago.  So much fun now learning about each other and finding our connection.

Sherry and I had fun decorating Easter eggs and we got to do a little shopping. There was also the seemingly endless stream of doctor appointments, and Sherry has had the opportunity to meet my doctors and hear from them directly.  I think she has appreciated that part. 

After talking with pain doc and cancer doc this week, I have come to the conclusion there is no reason not to go ahead and do the vertrebroplasty procedure.  Basically letting the blood transfusion chips fall where they may.  Well okay, the plan is for me to see the Nurse Practitioner at the Cancer Center every two weeks for a blood draw and then orders for a transfusion if needed from there.  Now that I have decided to go forward with it there will be a time delay because Doogie, the back doc, neurosurgeon is taking his vacation next week! So not quite sure when this back procedure will procede.

Trying to keep this blog post shorter than the rest so logging off now!  Ugh..that and the Dilaudid dose doesn't really last for long so it may be time for more.
Thank you again for your support. 

Perspective...Use it or Lose It

April 2, 2012  8AM

For the past few days I have taken to using my walker inside the house.  It has been riding around in the back of my car for months now, never coming out, but there if I thought I needed it.  Now it’s in the house and I’m using it to get from room to room.  Not because I can’t do it without the walker, but because I actually feel more bent over without it than when I’m up holding the walker handles! And I walk better, meaning putting one foot in front of the other instead of what I’ve been calling my ‘old man from Florida shuffle’ walk.

The walker is the Cadillac of walkers.  It has four wheels,  and a seat with a back rest, and breaks for the wheels even.  Let’s talk about that seat for a moment.  It’s made of type of high quality plastic that mimics leather or some such thing, and it’s slippery!  I fell off the walker seat this morning.  Bending over trying to clean the mess of yogurt that I had spilled on the floor, I reached a little too far and slipped down off the walker seat to the floor.  Ugh!  Now what to do?  Okay, checking for pain and injury.  Feel okay, just ego bruised.  But my EGO has been bruised so much lately it’s developed a thick skin.  First order of business,  finish cleaning the floor since I was down there anyways.  Next,  figure out how to get up off the floor.  Hmmmmm… maneuvering onto my feet in a squat was the first try.  Unfortunately, no way I can get up from a squat position!  That first started last summer.  That day was depressing.  Not enough leg muscle anymore.  (sob)

I did finally get up off the floor by holding onto the sink and pulling myself up with my hands and arms to a standing position.  Then sat back down on the walker seat.  Pain?  Nothing out of the ordinary,  but it was time for what I call my ‘break through’ dose of tramadol and you can be sure I got that. 

Easter Sunday, April 8, 2012

Finally a moment to sit back and think about all the medical information gathered this past week.  My methadone dose is up to 15mg a day.  Not quite sure that is enough yet, but added with a small dose of ibuprofen it sure helps the pain a lot.  Breakthrough pain is handled with Tramadol, but unfortunately there is still breakthrough pain, there's gotta be a remedy to that.

The appointment with the neurosurgeon (back doctor) went very well on Thursday and I came away from it feeling pretty good.  Although first of all I have to mention again how young these guys…err…doctors are these days!  Funny!  Seriously, for Dr Hutton, oh my gosh,  I know I’m getting older and they’re looking younger but can you say, “Doogie Houser?”  Too cute.  Okay, I’m old.

Poor guy went into our meeting with the oncologist’s word that I was wanting to do everything possible to fight this cancer and started out telling us (Joyce was with me as usual) about the big surgery with an eight inch incision that stabilizes the spine with rods and pins, etc and how it can be done and work around malignant tumors. Recovery and recovery time can be challenging depending on your medical condition (well let’s face it, my medical condition is POOR already).  You’re all probably familiar with   what I’m talking about already if you or someone you know has been through back surgery.  I soon explained that I was there just to hear what he had to say because the other doctors asked me to and because of the possibility of something that would help with pain control but be an easier procedure.

The good thing about this tumor in the spine is it involves just the L3 vertebrae and does not extend into the one below or above it. Doogie explained vertrebroplasty to us where basically they inject a kind of cement into your vertebrae to stabilize where the tumor has cracked and fractured the bone.  Apparently then they shave some of the nerve endings to give them space from rubbing and causing the pain too. Small incision and a couple days in the hospital and surgery and recovery time is much less.

After a number of questions by Joyce and myself, Doogie admitted that the big ‘ole spinal surgery would probably not be in my best interest, but this vertrebroplasty would be a viable option.  He says some patients feel the relief even in the recovery room and that a two to three week recovery at home would have me up and about doing pretty well.

Two to three weeks out of my life right now would be acceptable to me. Six months of being down and feeling sick and hurting and not being ‘out there participating in my life in the world’ - even such as it is now - would not.  Six months from now the tumors that are quiet in my chest could start causing problems and that would be so disheartening.  What a waste of time!

This is where those inspirational messages of “live every day like it’s your last,” come into play.

So,  feeling pretty good about the vertrebroplasty option.  Except.  Ah yes, except… I still don’t make my own Red Blood cells! Ugh.  People do get  transfusions on a regular basis.  Maybe waiting for a bone marrow donor to show up would be a good example of why a cancer patient would/should get regular blood transfusions.  I am so thankful for blood donors, by the way, in case I haven’t said that out loud in the past twenty-four hours or so.  I will say it out loud again I AM SO THANKFUL FOR BLOOD DONORS. 

After a couple months of blood transfusions I think things start to get a little more complicated with cross matching different antibodies in the blood and other stuff I don't really understand. 

What about chemotherapy if the tumors in the chest cavity start acting up? Without being able to make my own red blood cells, uh, no chemotherapy.  That is actually my answer, not the oncologist’s, but you have to remember oncologists are in the business of saving your life from cancer and they’re trying as hard as they can, but facing medical facts here, no, no if my body can’t even support itself, why would I want to make it support the chemotherapy too? 

Okay are you ready for this?  Another big kicker in the world of Linda’s medical condition.  Amazing.

As you already know, the chemotherapy treatments that I did (six rounds of Carboplatin and Taxol) shrunk the tumors in my chest, the medianstinal area.  However, the tumor in the bone in my spine and adjacent soft tissue grew at that same time.  Doctors are scratching their heads over that.  So I thought I would ask THE QUESTION.  Ummmmm…  ‘you know I had those Melanomas years ago…what is the possibility of the stuff in the bone being melanoma?” 

The oncologist jumped all over that!  He got a little excited about the possibility.  The most recent melanoma was removed just about 10 years ago.  A long time for a cancer recurrence.  Although I have been through a number of immune suppressant therapies since then and Melanoma does have a record of recurring long after it’s initial primary showings.  So Dr Sharman (oncologist) is asking me to have at least as needle biopsy to check it out.  Of course with a back procedure it would make a biopsy real easy.  Something I will probably do one way or another just out of curiosity, rule it out kind of thing, if nothing else.  Maybe I could make it in a medical journal!

For me, treatment for it would be kind of like grasping at straws, but Dr Sharman’s heart is really in the research side of oncology. (who would thought here in the middle of Oregon?)  For him, if it DID turn out to be melanoma, there is a new clinical trial they’re conducting.  First I would be checked for some genetic marker that they have found in 50% of melanoma patients.  If I was positive for that marker than I guess they have developed a treatment in pill form that there has been some kind of success with, but I don’t have the figures on how well that works.  Maybe because it is in trial mode. 

Okay, okay you all – don’t stray, don’t stray – I still don’t make my own red blood cells.  That would have to be fixed. 

Thank you so much for reading my blog and caring about how I am doing.

Blah, blah, blah....Uhhh I mean Blog, blog, blog

Blah, blah, blah…I mean blog, blog, blog….

Today I spent some time scanning a few pictures, and really it’s just a few, from my trip in 1987 and 1988 trips to see the cave paintings in Baja California.  So that is my blog topic today!  I know mostly my current health status is the most interesting, but indulge me as I take trips down memory lane. 

I’m not feeling all that bad right now, by the way!  The pain in the hip/back is very frustrating, but with these pain meds I’m on at the moment they’re bareable.  Today my focus has been on figuring out how to keep my head off the pillow when  get that drowsy feeling after taking a dose.  Keeping busy (I wish I could say moving around) works pretty well.  So sorting through and scanning some pictures was just what I needed at the time!

Okay to be honest,  I don’t remember what years I went to Baja for these trips!  The first one was set up during a February break in between school terms from the Riverside Community College.  One of the english professors put these trips together.  Sometimes also over the Christmas break and New Years.  My first trip, I think in 1988 was in February and we had the best weather anyone could hope for.

The group was large,  I believe a total of fourteen adults, the largest he had ever taken to Mexico.  We used a large van and the professor’s private vehicle.  Starting off from Riverside to the border at San Ysidro and then south to Ensenada.  Ohhhh… the best seafood lunch in Ensenada I’ve ever had.  Well, okay I think I’ve been in Ensenada maybe three times!  Then we continued south to a mile marker off Highway 1 in Baja Caifornia that the Prof was familiar with and we camped overnight.  In the morning we drove farther south to Scammon’s lagoon.  February is the time of year in Scammon’s lagoon when Gray Whales are birthing and have their calves on the inside bay while the males patrol the outside for predators and waiting for the family to travel on north.  (that’s how I remember is anyways!

The Mexican government, in those days, allowed only small boats on the water there with nothing more than oars and maybe an outboard motor.  This ‘tourist’ industry could only be operated by Mexicans that had obtained the right permits to take tourists out, and limited the number of boats on the water at one time.  Our group was large enough that we needed to take turns in the boat we found and I was in the second group to go out that day.  It was so fantastic!  We were out there in the lagoon and not seeing much of anything, no motor running on the boat and not much noise from us inside the boat,  when a whale came up right next to our boat.  She was about maybe 15 feet away just floating up gently next to us.  She disappeared right away, but it was so so neat to see – and feel. 

From Scammon’s lagoon we drove over to Guerrero Negro, a small fishing village and bought enough scallops caught fresh that day for dinner for the whole group.  We didn’t spend much time there because we were already running behind schedule.  On leaving Scammon’s lagoon we found a couple of vehicles stuck on the beach and in danger of being washed out to sea with the tide.  Our Prof knew about his danger and had parked well back from the beach,  but these other drivers had driven right up on the sand next to the tourist row boats without a thought to the tide.  Our group spent an hour or two helping out the hapless travelers save their vehicles from the lagoon!   Fun memories.

The second trip I took for the cave painting trips was over the Christmas break from school and we did not go to Scammon’s Lagoon and instead traveled all the way south to the town of San Ignacio.  We ate lunch there and spent a few hours hanging out and admiring the archeture of the catholic church there.  I don’t remember getting to go inside the church, but  do remember the thought about how much work and detail and craftsmanship had gone into this church as any of the cathedrals I had seen in England and Scotland a year or two before this trip. 

From Guerrero Negro we drove east into the the mountians to the village of Santa Maria where our gias (guides) would be waiting. Worst dirt road from rain runoff I have ever been on, and I’ve been on a few!  After a Wonderful dinner of scallops cooked in oil with lemon seasoning over a campfire (I’m serious, I was spoiled for the taste of scallops after that, nothing else has ever compared) we camped out for the night. 

The large number of our group put a little bit of a strain on the gia’s trying to find enough mules for all of us to ride for the trip. They had been gathering them up from individuals in other villages for a few days before we got there.  I got one of the larger gentler mules because I was a girl and because I was a tall large girl.  A perk in this case!  One of the members of our party was a small woman of Peruvian descent and she only got a burro to ride!  But the best trained gentlest burro!  She didn’t mind.  She was quite a lady and I wish I could remember her name!

The next day we set off on our trip out of Santa Maria heading towards the first of many caves we saw with the cave paintings.  Our group of 17 people in a mule train and a second burro train with our supplies mostly in old milk crates and expertly perched on the burros.  The burro train would usually take a different route or stay out of sight, but when the two ‘trains’ met up it was quite a sight to see.  At the time we made that trip in errr… 1988? It was thought that these cave paintings were about 2000 years old and made by local Indians that lived in the area, moving and trading between the sea and the mountains.  Since then,   much more recently, they have dated the cave paintings in Baja Califonia and found them to be over 10,000 years old!

We later traveled into a neighboring valley of goat farmers and we must have made it just after goat birthing time because there were so many baby goats around all us women in the party were just enthralled.   I had some pictures of them once, but don’t see them in what I have left.

Another night camping out (our group mostly in two man pup tents, but the gias would sleep on top of shrubs they beat down flat and rolled out their saddles and saddle blankets on) and the next day we visited more cave paintings and rode into Rancho San Gregorio.  A privately owned family ranch, really, accessible only by foot at the time, no roads leading in to it.   The farming and  irrigation system there was supreme, I think still in use from what Jesuit monks taught the early Californians.  They had citrus trees (with limons an orginial variety of limes and oranges, I think).  They also had a leather tanning vat like something you would have seen in the previous century.  There were a couple of calves tied up nearby that none of us ‘gringo city folks’ really wanted to think about.

From Rancho San Gregorio we started back to the village at Santa Maria, passing through Ciudad de San Francisco (City of San Francisco).  At Santa Maria we were greeting again by the village and the families were all so happy to the see the gias, their husbands and sons back.  To help to add to their economy they asked if they could cook us lunch and, of course, we all agreed.  Very good goat stew!  It was a good meal.   Lots of group pictures were taken and then we had to end our trip and start back north for Alta California.   Ahhh… great memories. 

Pain Control and other fun stuff

To premedicate for chemotherapy I took pretty high doses of dexamethasone the night before and morning of treatments, as well as, getting it as one of the many coctail drugs during chemo day.  The way this effected me was first of all,  I could walk without pain!  Nice.  It also makes me real happy. Nice. It was given to alleviate nausea and other side effects after chemo. Nice.  If you ask my sister, Joyce, who has been there for me every step of the way and came with me to every chemo treatment, it also made me very talkative! Uh. Nice? Poor Joyce,  she got to listen to me go on and on and on about who knows what all day long. I would play on my laptop and maybe post on Facebook and I also got to bug some friends on email during the day.  Especially my two friends at the DA’s office in Tahoe City, Maggi and Heather.  One or both of them would be at their desk, and every third Thursday, would be nice enough to take time out of their busy day to keep up with me on email.

Lots of doctor appointments this week have added up to a lot to think about. I’m so tired of thinking about – IT.  

Tuesday I met with Dr Mones, the palliative care/hospice doctor and we went over my new pain medications and how they are working for me.  In the end he has upped my small dose of methadone (2.5mg)  to 4 times a day.  Apparently methadone will give you a good initial pain control boost quickly but then tapers off until you take more.  So take it more frequently.  It also takes a week or so to get it in your system to the work better – something like that.  One reason we are going the methadone route is because I have such a problem with opiates making me sick to my stomach.  And all the other fun side effects that go with them, dry mouth, constipation, etc.  So trying out this methadone thing sounds like a good idea to me.

Gabapentin is the nerve pain med.  He moved the dose of that up too and I just can’t tell one way or the other what it is doing for me. 

Funny story though -  he cut back my dose of dexamethasone.  Dr Mones initally had me take 4mg of dexamethasone (the steroid) in the morning and then another 2mg that afternoon.  Well by the time I got to the appointment with him yesterday I was wound put tight, spinning, spun.  I was talking, talking, talking.  Very different than our first visit when I was hurting, hurting, hurting and much more subdued.   So while he’s giving me his new instructions for medications, he says, “uh,  and you don’t need to take that second dose of dexamethasone in the afternoons.”   He couldn’t help cracking a little smile. Hah!  Joyce and I picked up on it right away.  She laughed and made a joke.  I acknowledged, with a laugh, and comment about how spun I get on that stuff.  It was funny.  We laughed over it when we had a chance again in the car. Joyce told me later she wasn’t sure during the office visit if I was going to let the doctor talk.  I’m still giggling at the whole situation. 

Just to top that day off, I came home and overdosed on methadone.  Okay well it wasn’t that bad but I just opened the bottle and took a whole pill without thinking when it should have been half. I tell you, I’m tired of thinking.  I thought it would put me down for a couple hours, but turned out to be just like if I had taken only the half pill. 

Wednesday was my appointment with the oncologist.  To begin he has made a clinical diagonosis that my anemia problem is from the Pure Red Blood Aplasia.  Meaning I don’t make red blood cells anymore and will need the transfusions.  The rest of the stuff in my blood I can make on my own. The treatment for it is to treat the Thymoma.  Ummmmm…we’ve done that.  The good thing about the ‘clinical diagnosis' is that he’s not going to suggest I have a bone marrow biopsy. Blood transfusions will probably be needed again, but I don't know how often yet,  Cancer Doc says come in if I think I need a transfusion (finally I am starting to recognize the symptoms) I can go into the cancer center for the blood check and then they will set me up.  

He has me set up to see a neurosugeon next week to talk about surgery to my spine. The goal on that would be pain control. There is also a soft tissue tumor  adjacent to my vertrebre that has been resistant to the chemotherapy treatment.   Sounds like that is the one giving the nerve so much problem and causing the pain.   So I will go to see what the Back Doc has to say.  A major surgery at this point?  Uummmmmm… maybe not for me, but  who knows if there is something less complicated and easy on me that they might put on the table. (no pun intended)

Thursday was appointment time with the Radiation Oncologist.  I already had the word from Dr Sharman that more radiation to my back was not advisable which is why he turned next to the surgeon.  But they wanted me to talk to the Rad Doc and hear what she had to say.  She was very nice and explained things very well to me.   The spot where the tumor is in my L3 vertrebre is below my spinal cord, which makes it a good thing and could take more radiation, but it is still very close to the nerve endings that come off the spinal cord and then they can move around to different positions, for example when lying down, so it’s too much of a chance.  She did give me what I think of as a desperate patient’s way to keep trying anything that will work,  and said she would do it if I wanted, but it wasn’t advisable.

To sum up the week with doctors,  symptom control is the main goal right now. PAIN control in my case and I’m working on it!  Still not quite there yet.  I may call the pain doc today and see if I can change something over the weekend. (but remember the methadone takes a week to start really working like it should and its only been about five days now)  I still have times between medication doses that I’m hurting probably more than I need to let myself.  In fact I keep getting lectures from the docs and nurses now about being up front and letting them know I hurt and if we need to change things and asking for what I need.  So much of my approach has been to wait and see what happens, but with the pain thing, when you wait and the control doesn’t happen then you’re behind the game!  I will learn.