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.

My Fan

How nice is this email?  I have a fan.

______________________________



Hi Linda,


You don't know me - but I'm a fan of yours....  Yesterday, S shared your "new blog venture" with us, and I'm in ah of your adventuresome spirit.  I have a friend, a mutual cancer lady, who is using a blog to share her journey as well.  Maybe I'll try it too someday - time will tell.


I found your message to be interesting, positive - and of course a bit unnerving.  You and S must have that positive outlook in common ~ she always finds the sun-beam, no matter how small that beam may be.  I have a label for cancer;  The Great Cheater. . .It cheats us from being the people we have aspired to be and makes us walk a path of great uncertainty and pain.    I too am walking the cancer trail, so have some knowledge of "from where you speak".  In 2005 I was diagnosed with AML Leukemia and eventually went to Seattle for a  stem-cell transplant from one of my brothers.  The transplant worked well, as I have not had a re-occurrence of cancer since that time.  My immune system is severely depressed with medications etc., but I have been blessed with relatively good health for six years. I'm not supposed to really be in the sun or exposed to "dirt stuff", but that is "my thing" - playing in my flowers and vegetable gardens.  (Not to mention the weeds that need to be eradicated.  )  Living in Spokane, WA. makes for a fairly short season, so I'm tickled that spring actually seems to be heading our way in earnest.   That is my joy, trying to encourage the plants while seeing the beauty of God's hand in nature.


I will not keep you any longer, but wanted to encourage you during a most uncertain time.  If you would like to communicate with email messages - I would be honored.  Please know that you are not alone in this difficult journey.  God's speed!


Always, Sue

March 26, 2012   

Ouch!   Started my small dose amount of Methadone this morning and it’s not working quite as well as I would like. Ouch, ouch ouch.  It’s about six hours later and I’m adding ibuprofen and tramdol (Dr. said I could take tramadol for break through pain) to the mix.  I think the ibuprofen is really the one that helps the bone pain.  If that is what it is.   Good thing is I see Dr Monies (the palliative care doctor) for a follow up check tomorrow to see how this medication regimen is going so he can tweak and change things up for me.  

I saw a blurb on the news this morning – the story about redheads having more pain reaction than people with other hair colors.  I can attest to that. That information came out first a year or two ago.  I learned from going to the dentist and the dermatologists, they always had to give me extra lidacain for instance.   Whenever the dermatologist had to numb something up for me she had to use a lot of lidacain before doing any cutting.  And then I could still feel the little pin pricks of the needle going into my skin when she was stitching me up! Weird feeling.  Just a little pin prick so I never asked for more lidacain for that part. 

*Okay it’s a couple hours later and I think the added meds did the trick, the ouch is subdued. 

When I realized I was going to need to move here to Oregon from Truckee I made the decision to give away as much of my stuff as I could.  For one thing, get rid of the need to cart it all to another space.  For another working off of the stories I’ve heard about other cultures that feel it is imperative to give away your belongings before you die so that you don’t have things attaching you to this life.  Makes sense to me.  It has worked out quite well,  I don’t have too much stuff to deal with here.  Now I find myself being not being so careful about buying new stuff though!  Oh well, it’s only stuff.

Years ago when I was in my 20’s I had been putting together a Christmas stocking for a guy I was just head over heals infatuated with.  Adding just little things to the stocking that I knew he would like.  Such as old antique toy cars from the antique store.  He collected patches too and I had a patch that I loved and was very proud of even though I don’t remember where I got it.  It was sign language symbol of “I love you” with a hand displaying the thumb, index and little fingers on a pink heart background.  I wanted to keep that patch and thought long and hard about parting with it.  Until finally I came to the realization that just having thought about giving it away, I would never be comfortable with it again until I did give it away.   My life has always been that way.  If you want it, it’s yours.