No New Cancer!

I had a standard follow up CT scan yesterday.  I got the results today.  Nothing new.  No changes, no tumors, nothing that shouldn’t be there.

I didn’t realise how worried I’d been until I started crying.

I’ll keep on with the mantra.  I’m done with cancer.  I’m not having any more cancer for now.  Yes I live with cancer.  I’m dancing with cancer, but right now, I’m not having any more of it.  What I’ve got already is plenty, thank you very much.

I bought plants today coincidentally, big philodendrons to fill gaps in windows where too much sun comes in around the curtains in the heat of the summer.  And two Antheriums  which were marked down, because I love them and have wanted them, and at $7.50 per I could justify it more than at $20 per.  And a little Sago palm because I suddenly had a great need for a Sago palm when I saw it.  Something that makes me think Florida maybe, cause we’ve had to be there and will have to be there, and I’m thinking of Sharon and her husband.    I told John we need to celebrate no new cancer, but if need be my plants can be celebrating.

The plants will be a pain for him, because right now the watering scheme is I fill the pitchure and point and say “pour this on that one”, since I can’t reliabally get to wehre they are.  I did get big long term waterers to try out.  Not really pretty, but neither are dying plants.  And the plants make me happy.  I also imagine a rain forest -ey house, and cleaner air — despite the fact I’m living in the middle of a vally surrounded by the cascade and coast range foot hills, and can’t see my neighbors most of the year.  I’m sure cleaner air is still a good thing, and the plants are providing that.

Today I got a walker

And it’s a relief.  I’m not more steady on my feet, but I’m not in fear of falling because of being unsteady.  I need to name it, and decorate it, and jazz it up some.  The doctor was willing to prescribe it, and insurance is fussing, because it’s not needed for a Melanoma diagnosis… duh.  It’s the foot drop, originally caused by the melanoma that’s the problem folks.

I’ll take a picture later.  Right now, while not moving any more gracefully than i have for the lasat couple weeks, I’m feeling more confidant, which is nice.

I only slept about four hours last night, thanks prednisone, so I didn’t knit at all today.  No focus.  I’m staying awake now thinking that maybe I’ll sleep a few more hours tonight then.   I have a CT tomorrow, which I hope finds nothing.   Which reminds me, I need to schedule a results apt with my GP about that one.  Since my mantra is “I’m not having more cancer right now”, and I’ve been preoccupied with the foot drop, I hadn’t thought to schedule that, but I really should.  Oops.

So far there’s no sign that the 120 mg of prednisone is making a bit of  difference on the foot drop.  I stay at this dose for a week, unless there’s some reason to drop it sooner, and then we evaluate and start tapering down.  I’m thinking that this may be a scar tissue issue, or some other yet unknown one (scar tissue seems most likely) and a long term one to deal with.  It means changes, but that’s life.  I feel the need to buy T Shirts, (Prednisone mania?  I don’t know if that exists, but it sure sounds possible!)  I saw a kid with one that said “I’m not dead yet.”  from the Monty Python skit.  Y’know — I’d wear that.  I think it was black, but even so.  I’d wear it.    Think Geek also has one t hat says “Keep out of direct sunlight”, which I like.  Also black of course.  I don’t want black!  Phooey.

Anyway, I have to call and make an appointment with the radiation oncologist who did the gamma knife surgery, since their office hasn’t called me yet, because the neurologist wants her opinion on whether this is scarring.  If it continues and doctors are willing to commit to it being long term, then at least I’ll have a place to make plans from.  A change of vehicle — does health insurance cover that?  I certainly can’t drive without my right foot functioning!  There’s probably more.  Health insurance isn’t going to move us in to town,  but we do keep talking about that one too.

Two more weeks until school’s out, then we change to a summer routine and go from there.  Saturday will be a week on the Pred and we’ll see what happens next then too.  One step at a time, despite the dragging right foot.

Ha there’s a build your own Not Dead Yet shirt place  — I might do that one!  http://www.zazzle.com/im_not_dead_yet_tshirt-235356435255083779

layout note

If I’ve done things right, I’ve fixed it so that my post offering a Chemo Cap is going to hang out as the top most post here for a while.  I sent this link to someone last night and said “but you might just not look at those pictures I posted first”, because they just seemed as if they’d be a little in the face.  I’ve even been a member of The Naturist Society for a decade or so now, but I don’t tend to put pictures on line.

I’ve wanted a shirt for a long time that says “nocturnal nudist”.

I slept most of the night last night, as these things go.  10 to 12 and then 2 to 4:30.  Ha, it looks like so little here.  It’s more than the night before.  I’d be worried about it if I were going to be driving.  We’ve also got our ducks in a row for someone chauffeuring me for the day today, again.  John gets us to school, and then someone else takes over for the rest of the day.  I like the company, but I hate the lack of independence.

I’m also really worried about falling.  My foot isn’t improving, and my leg is getting tired very readily.   I think I’ll call the GP and ask about crutches or a walker.  I don’t know what would make more sense even.  Maybe google will give me some ideas.  It’s another week until the foot brace that I was supposed to be better-before-it-was-ready is ready to be fitted.  These are some damn long weeks!

Cancer pictures

I read Jeanne’s post about someone’s post mastectomy photo being called sexual and abusive.  I haven’t had a mastectomy, no need, knock on wood.  But I thought I’d post photos of what cancer’s done to me anyway.  If I can figure out how to get WordPress to let me upload them.  Jeanne’s post is here: http://www.assertivepatient.com/2009/05/fight-backpost-your-mastectomy-photos-online.html

My scars are on my back — one on my upper right shoulder from the original melanoma lesion — a mole smaller than my little finger nail that was removed in 2005 with clear margins.  Clear margins left a five inch scar mind you, just to be sure there was nothing in the surrounding tissue.  But that was it for three years.  Then mets appeared in my brain last summer.

No scars visible  from those.  But 100 pounds of steroid weight gain as I’ve lived on and worked on getting off the steroids that kept my right foot working as the mets died.  Oops, the swelling has come back, my right foot is off the work rolls again now.

Then a place in my lung that had been presumed to be asthma scarring grew in January.  Now there are two more scars from removing it at the end of March.  Another met.  Two more scars from lung surgery.

These are my scars from Melanoma. The origional at top right, and two from lung surgery at lower left.

This is ten months of steroids for the effects of swelling from brain mets.

This is what my cancer looks like.  I’ll dig up a picture of myself before the steroids at some point.  I weighed less than I had in years, coincidentally.  I was pretty pleased with myself, although it was chance more than anything.

The last couple of weeks, something set off the swelling that brought the brain mets to my attention last summer, again.  No new mets can be found, just either swelling or scar tissue.  So my right foot doesn’t work again.  Now I’m fat and an invalid.  At risk for falling.  Taking a huge dose of prednisone, so that if it’s swelling, perhaps it will back off and I’ll be able to walk safely.  Tonight, while I’ve had to had help getting in and out of the tub for a week, I couldn’t manage enough traction to hold my balance to get in at all.  We gave up and sat me on the edge to get in, while my husband climbed in around me and then balanced me so I could at least sit against the far wall of the tub instead of the door.  My eight year old daughter promised to wash my butt later because I couldn’t wash well sitting on the edge of the tub.  I’m hoping she’ll forget.

My daughter also says the steroids make it seem as if I have three breasts, my belly wants to be one now too.  I smiled and said “thank you”.  It’s the only thing to say.  That and “stupid cancer”.

There’s a little poem about what cancer “can’t do” to someone.  it’s meant to be positive.  It lies.   It means well, but it lies.  It’s my choice to avoid it, but cancer screws around with everything possible, and I just keep going figuring that I’d rather not stop.

Would you like a Chemo Cap?

Hi folks.  I’ve got the urge to knit right now, and I’m making myself a chemo cap.  I’m not having chemo — I’d rather not, but three times through ‘wack it out and toss it’ treatment makes me think that eventually chemo will be in my future.  Caps are quick and this one is going fast, and I want to keep making them for a bit.

So here’s the deal.  Do you need one?  I’ll make it.  Well, don’t swamp me.  :-)  You can choose and order the yarn from one of the links below, and have them send it to me.  I’ll knit the hat (see hat pattern link below for a picture) and send it to you.  I make no promises to my speed — right now I’m going fast, but stuff happens.  You’ll have to email me to set up, so if I don’t think I can get to it, I’ll say so.

Easy steps:

1.  Look at the picture of the cap I’m willing to make.  I may offer more options as I get bored with this one, but this eon is quick and easy.  You get to add your own pin or other adornment to it.  I’ll post a picture of mine when I finish it.    http://www.elann.com/ShowFreePattern.asp?Id=182024

2. Look at the choices of yarn.  Mine is in one from Angelika’s cause I wanted variegation, and I’ve used that yarn before.  I’ve ordered from both places before, and they’re fine to work with.  I think Angelika’s is smaller, but there’s a ton of colors to choose from in the yarn.  Both are mainly cotton stretchy yarns and should make soft hats.

Angelika’s yarns Cascade Fixations  http://www.yarn-store.com/cascade-fixation-yarn-colors.html

Elann’s yarns  Esprit  http://www.elann.com/productdisp.asp?NAME=elann.com+Esprit&Cat=&ProductType=5&Count=1

3. Email me natureschain at gmail dot com  and make sure I’m ok with taking on another one, get my shipping address, all that jazz.  Send me the measurement across the top of your head from ear top to ear top to do our best to have the hat fit you.

4. Choose your yarn, place your order and have them ship to me, or ship to you and then you send it to me.

5. I knit and send the hat to you.

Note, the stripy Fixation yarns will give you kind of circular stripes around the hat, that are wider at the top and get narrower.  They may change at the band, I’m not sure yet cause I’m not there on mine.

Any questions?  Let me know.  I’ve knit for years, but not so much recently.  I don’t guarantee perfection, but it’ll be unique and yours.

Not really here yet

This is just a drive by post.  I’ll catch up eventually, but life’s  been busy, kind of.  I’m catching up on The Assertive Cancer Patient’s blog at the moment and just saw a post there I really liked:

defining terminal

She also had a more recent post commenting on Debutaunt’s death.  Debutaunt was one of the first cancer bloggers I found this past autumn.  She was my age, with a daughter the age of my daughter.  A different cancer and different treatment, but that’s all of us.  She’s no longer living with cancer now.

I think of her and her family.  One of my biggest fears is Logan growing up without me, and my not seeing her grow up.  My goal when my brain mets showed up in July 08 was to live until she graduates from Waldorf School 8th grade, which will be June of 2015.  Although longer would be fine with me too.  It’s a little discouraging that I’ve had to deal with mets a second time already since then.    I just keep going.  It’s worked for me so far.

I hope to post more here, and more regularly.  Life since lung surgery knocked me for a loop.  Recovery from surgery wasn’t bad, apparently, but other things tripped me up too.  I’ll try to get back here and post more.  Real soon now.

What Next?

I had my PET scan, which was mostly dull. I can write about it in detail if there’s anyone desperate to know. The person making the reminder calls was obviously reading from a script, and completely unprepared to be flexable when I asked about meds I needed
To take with food and couldn’t change the time on. Now I can work out solutions myself, and generally do. I get up early to eat before four hour fasts. The Reminder Call Woman managed
to really rub me the wrong way, so I became equally inflexable.

After a fuss and some useless suggestions (bring pills along and take at ten when scan is done. Sorry four-thirty to ten is too big a change for pills that could theoretically cause a siesure if I screw with their timing much.). She settled on calling me back after she talked to the PET Tech. It turned out I could eat something with meds if I needed to as long as of was no less than four hours before my appointment time.

I read up ok PET scans again and ate a chunk of protein at the six hours before point and took meds without other food at the usual time. The main result is that I feel pukey, which happens when I fast anyway. My appointment time was 8:30 and I got out and could go eat at 11:30.

The PET tech, Luke was great. He travels with the Oregon Immaging Center PET trailer to three places in the Eugene-ish area. He shared my frustrations about my reminder call. I’m glad I only had to deal with her on the phone briefly!

I don’t know the results of thenPET yet. I am hoping it shows just the one tumor ( none would also be ok ) and that it doesn’t show in “brightly” lit up, which would evidently mean fast growing.

Monday we do our usual haul in to Eugene for school with suitcases for Portland. After school we go on to Portland and I have a 9:00 Tuesday appointment with Dr Vetto the surgical oncologist. After that I’ll know more. The tentative plan is that he’ll remove this tumor from my lung sometime later this month. With luck using video assisted surgery rather than open lung surgery.

Now I’m against all of this, just so you know. Starting with cancer. I didn’t vote for it. I don’t want it. I object. Same for the tumors in my brain and having
To have them treaten this past summer. ( look for the Gamma Knife
Link). So I object to someone making holes in my lung too. With that noted less invasive is better. And if making holes in my lung will get rid of the cancer with no furthejr treatment, all the better.

Now if it would take the hint and stay gone!

Not going there

So how do you not go there?  Some thought will cross my mind and suddenly I’m thinking about the chance of my eight year old daughter growing up without me.  I think of all the things I want to be there for, and see her do.  All the things I want to support her though.  Some of it is selfish — I don’t want to miss it.  Some of it is thinking of her doing these things without a mother.  I wonder if she’ll remember me if I die soon.  And how well.

A friend’s, well, two friends family member died just less than a year ago after a seven year experience with cancer.  His daughter was just a few months short of eight.  He’d had cancer since she was born effectively.  John said in passing “she won’t even really remember him”.  And I said “of course she will!”.  But that statement haunts me.  What if Logan doesn’t remember me.  I don’t think it’s possible, she and I are a team for most things — we’re together for everything outside of school.

She’s competent, and I expect her to be.  All along I’ve included her in decisions.  I am teaching her, gradually, to be able to live without me.  To make good decisions.  To be able to do things on her own.  People note that she’s mature.  Evidently she does things that other eight year olds don’t.  I knew someone who didn’t trust her fourteen year old daughter to fly across the country on her own.  By the time Logan is fourteen I expect her to be able to get anywhere on her own, and probably handle purchasing tickets too.  I’d be frightened, as a mother, but I expect her to be competent to fly internationally at that age.  I need to teach her how to get around town by bus, but I don’t know that one, so it will be trickier.  I need to find someone who’s good on buses.  That’s a side note, except that I will feel good about that part of things — I’ll have done what I can by whatever point to give her a good base to stand on.

Neither of my parents is dead.  They are both in their seventies.  I don’t know what it is like to not have a parent to talk to, even though we aren’t close.  John’s dad died when he was sixteen, and he still says he wasn’t affected that much by it.  John is like that.  I worry about it.  I worry about how he’ll be affected when I die too.  I’ll leave him a list of things like “there has to be a memorial, because Logan  will need one even if you don’t think you do”,  because he’d be likely to say “why bother” and skip it.  What will it be like for John without me around?  I’m a burden right now, and we never planned for that, but I’m still here.  And I do a big part of the care for and support of Logan.  John’s not tuned in so much on that area.

Back to my origional question:  how do you not go there?  How do I not end up in that big puddle of tears thinking about Logan growing up without me, or John coping without me?  I know they’ll manage, it just makes me so sad to think about it.  Choose Hope has a button that says “don’t waste today worrying about tomorrow”, which I bought and remind myself of.  Looking at their pages just now I see they have one thaty says “Cancer is a word not a sentence” too.  I just ordered that book from Powells (I don’t like Amazon! except for songs for my ipod), and I love the statement.  I hope the book is as good as the title.  Corny little sayings, but they help.  A long time ago I read something about imagining a big hold button, similar to one on a telephone, for when things go to be too much, and pushing it as needed.  I do that too.  Sometimes it works.

Dexamethasone and Cortisol

So I’ve been tapering dexamethasone down for three months now.  My edema gets worse every time I drop the dosage.  Everyone says “how strange”.  I agree.  But it seems to come with the territory for me.  It sucks too.  My newest oncologist mentioned seeing an endocrinologist if I had further problems, which sounded like a good idea if I needed to.

Then John asked my naturopath to test my Cortisol levels when she was ordering other blood work.  It’s mentioned in an article called Dexamethasone Therapy in Patients with Brain Tumors— A Focus on Tapering The article says if a person’s Cortisol level is above 10 mcg per dl when they are taking .75 mg of Dex a day, it is safe to discontinue the Dex.  Otherwise, effectively you have to do something to increase the Cortisol level before stopping the Dex or substitute some other steroid for it while trying to increase the Cortisol level.  I’m taking 1mg of Dex a day, but we tested anyway just to see what was happening.

My Cortisol level showed up at less than 0.4.  IE below the level the test could detect — it only can see as low as 0.4 — and I’m below that.  HA.  So I’m not stopping the Dex quite yet, and the doctors are working on an appointment with an endocrinologist for me.  Just cause I might have needed one more doctor.  I’m glad we checked.  I’m not sure exactly what happens with no natural or artifical steroid in your system, but I don’t think it’s good.

the plan now

What did I say last?  I haven’t looked to see.  The plan now with this alien in my lung is to have a PET scan in about ten days, and then see the cancer surgeon in Portland who removed the original melanoma on my back.  Provided the PET doesn’t show a whole lot of tumors that were invisible on the CT, then Dr Curti, the medical oncologist, wants to have the surgeon (Dr Vetto) remove the tumor.  He said it may be able to be done with the video assisted type of surgery, so I wouldn’t have a huge long incision and cracked open ribs.

While I’m against surgery on principle, (note I’m also against chemo, radiation, cancer, and a whole lot of other things.  It hasn’t done me any good to be against them, I’m just making it clear I object!), less invasive surgery is better.    Dr Curti thinks there’d be no chemo or radiation follow up after surgery also.  Just remove it and be done, effectively.   Simple, from the viewpoint of the people not having the surgery.

Dr Curti wants to remove this thing whether it looks like cancer to the PET or not, just to be sure of what it is.   If it is cancer they’ll identify what type (in case it’s not melanoma — just what I’d need, some other type of cancer!) and provided I give my consent (I’m just waiting for the chance) they’ll take a part of it to study and if it will grow in a petri dish (or whatever the growing-cancer-in-medium-of-choice-is) then my cancer would get to be part of the research into making cancer vaccines.  That part is really exciting.

So for now, I’m waiting for (1) the PET scan, (2) the consultation appointment with the surgeon, which has to wait on his office seeing the notes from the medical oncologist, and (3) provided things go well with one and two a surgery date.  Dr Curti figured it would all be done in the next six weeks — which is by the end of March.