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.

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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.

Me and Mary Loff

This photo is from the "Return of the Red Buses" to Glacier National Park on June 6, 2002 at the Glacier Park Lodge, East Glacier, Montana.  What started out as a beautiful June weekend in Montana ended up with a snow storm coming through, electricity going out at the hotel and lots of fun!  I'm wearing my stylish long sleeve, mock turtleneck, size 2XL t-shirt provided by the Ford Motor Company who was sponsoring the event.  Yes, I said size 2XL!  It was at least about 4 sizes too large for me, but the only one left!  It's been a nightshirt for me for the past 10 years. Can't believe it's been that long.

Sunday, March 25, 2012

All kinds of subject matter come to mind for me to write on my own personal blog.  Life stories from some of my travels, and I have had some good travel experiences in my life.  So proud of myself for not putting those trips off with excuses about waiting until I retired from work (there will always be time) or had the money (I had the money then) or whatever other reason I hear people put of things they want to do in their lives.  Mostly if I wanted to do something, I did it. My friends Mary Loff and Jenny Hansen will remember a trip we took that included staying in the Lodge right at the end of the season in September of errr... 1986?  It was so quiet and we were so far from the main part of the Lodge we felt like we couldn't help but compare it to a scene from the "The Shining"

Life stories from my work.  Very sporadically I used to write down incidents that happened while I worked as a police/fire/911 dispatcher.  So much of it would be kind of depressing, even the funny stories could carry a layer of anxiety with them so I was never very good about keeping a regular journal and rely mostly only on my memory.  A memory, by the way, that is getting more and more shaky by the day.

Life stories from the places I have lived.  Those I have already started on paper.  I listed all the addresses I have lived at in a journal and started to write about each one.  It has turned out to be more about the lives of the pets that lived with me in those places.  Great memories of the unconditional love from my pets.  I’m typing this on my little laptop computer as my cat slowly crawls her way between my hands, making me adjust but still able to type with her and the laptop on my lap at once.   730 Anderson may turn out to be where I lived through the last days of life with my older cat, Timshel,  and the loving days after that with Ping.  If it looks like I will have the money, I’m thinking of setting up a bank account to fund care for Ping for whoever gets to adopt her after I’m not able to care for her any longer.  I know, silly,  on some levels and to some people, but it might make me feel better and think that she has a little advantage. Do you know, she is four years old and I have not ever heard her hiss once. Yet. I supposed it could still happen. 

How about stories about my health care adventure?  They start way back from the time I was with an HMO in 1986, when I was 28 years old, and had the unexplained pericarditis.  In retrospect, that HMO did a great job at the time.  The health care issue probably isn't a good topic to get into right now!  Okay enough for today. 



Starting a blog for those that are interested in my journey through this Thymoma thing.  The quote I put on my 'introduction' makes me roll my eyes because my Thymoma has not only spread to the lining around my right lung but also to my bones.  But I laugh anytime I see the word 'rare' associated with some disease or syndrome or something I've been diagnosed with. Yes I am one of those Rare ones.  :)

I learned Thursday that the tumor in my L3 vertrebre has grown.  Chemotherapy treatments worked on the tumors in my chest.  That big one around my superior vena cava and my carotid artery. You know the one pressing on my heart and on my trachea and making it difficult to swallow? That one has shrunk.   The one in my lower back in the bone that is causing pain-pain-pain has not.  It’s difficult to stand for longer than a few moments.  Walking is not as bad and I can actually walk down a hallway or from the parking lot to a store’s entrance.  Then I grab a scooter with a big basket provided by the store and drive myself around.  Have you noticed those?  I never did until now when I need one.  Seems like all the grocery stores have one or more around – nice perk!


I also learned that I was very low on the red blood cells AGAIN. It may be the aggressiveness of this tumor that is causing my bone marrow not to regenerate the red blood cells I need.  I was having some symptoms and the lab test showed I was critically low in red blood cells again Thursday.  Well how frustrating is that? Ugh! It has only been two weeks since the previous transfusion of whole red blood.  Uh-oh,  is this going to be a bi-weekly thing?  For how long? 

Another cause of the anemia may be a thing called Pure Red Cell Aplasia.  It is associated with Thymomas and is thought to be an autoimmune disorder.  So Dr Sharman is doing some more tests on my blood and I go back to see him next week to see if we have a cause for the anemia.

Friday I went to see Dr Mones for the first time.  He is a primary care doctor but he also specializes in Palliative/Hospice care.  He’s a pretty young guy, or at least he looks young, and we spent more than two hours talking and making a plan for my pain control!  So I am set up with a nerve pain medication now.  Both doctors think my pain is from the tumor pressing on a nerve.  Also,  Dr Mones has me taking steroids for the inflammation around that nerve and last but not least Methadone for pain!  We’re adding that slowly and I don’t start the Methadone until Monday.  But already I’m feeling better because there is a plan and someone to walk me through this pain control thing. I also learned from Dr Mones that the tumor has not just grown, it's doubled in size.  

Palliative care doesn’t mean you’re automatically on Hospice care.  Palliative care is also for people who are still getting treatment for their disease. Like chemotherapy or Blood Infusions.  Dr Sharman has me seeing a Radiation Oncologist next to see if they think its possible to use more radiation on the tumor.   I guess it’s a fine balance between damaging the tumor and damaging my spine.  Radiation could also help with pain control and could be just one or two sessions.  Oh boy,  I was so sick during radiation I’m not sure that is a route I want to take again.  Talking myself into it – just one or two times would be okay, just one or two times would be okay.  Just pre-medicate heavily in advance…

Well this is probably enough for my first post!  I want to let you know I am open to any and all questions so if you have any please don't be shy about asking. Oh, and suggestions about how to do this blogging thing.  I appreciate the support from my friends and family Very Much.