June 05, 2009

In the beginning.......

Fast bells that ring for the emergency down the hall and slow bells that chime for fresh ice water in pink plastic pitchers. Little paper bracelets that are meant to keep you alive and pills that are meant to keep you asleep.Quiet sobs that mix themselves with the shuffle of discharge papers and the sound of that one shaky wheel on the IV stand as it makes it’s way one more lap around the nurse’s station. It has been seven days ago now…well, let’s back up a little more.

Back pain…there didn’t seem to be much of an answer for all the pain. In one last effort to find some relief, I hobbled in the Dr’s office and cried through about 5 paragraphs of “whoa is me” and “can you make someone or something help me?” I guess the Dr understood me through my sobs and he prescribed big yellow pills to take down the swelling, and to please come back in 3 weeks. Typically 3 wks would translate into “someday” if I was getting relief, but there was one other test I wanted to have. My mother and her sister both have a type of insulin resistance, and if I were to have the same thing, I wanted to know.

The Dr agreed to the blood test and for good measure he through in a few other standards. Within a few days the results were back and everything was SPOT ON but one. This vague test for “phosphatase’s” showed that there was something quirky about my calcium levels. It could have been one of hundreds of “nothings” but it had to be checked, so I re-took the test.

After another set of abnormal results the Dr scheduled a bone scan to look for…well, something. Scared doesn’t really touch the way I was feeling but I showed up for the scan and it became hard to define the blur of days and nights since then.

The scan led to an apt with the Oncologist within days, which led to 6 CT scans and an MRI in less than 12 hours. Full of iodine and radioactive blueberry stuff I left the building that night, numb, as the technician said “good luck with all you have ahead of you” and with that, somewhere deep, my last brain cell was consumed. By morning communication was fast and furious with the Dr’s…20 of them from Neurosurgeons to several types of cancer medicine. With all of them in agreement, quietly, but very quickly my parents delivered me to NW Hosp for surgery.

Needles and tubes pumping in steroids for swelling and thinners for clots and fluid for hydration and blood for anemia were filling my arm. In direct opposition in front of me was tonight’s dinner menu and American Idol on TV. Normal life, and death all in the same room. I ordered the vegetarian lasagna…yummy carbs! Chad collapsed on the cot next to the hospital bed and no one could make a sentence sound normal anymore.

The morning was charts and blood tests and no food or water. Pray…The kids were with gramma and grandpa and I would have given my kingdom for a blasted ice chip! Tears, surgery, a tumor was taken out of a collapsing vertebrae that was a few very short moments for paralyzing me…the bone tissue in my whole spine so compromised that the stability was gone…and why in the world did she decide to sing “Hopelessly Devoted To You” Duh! Although is does sound a bit less corny through the fog of anesthesia. Of course she would be eliminated.

Fear, biopsy, confusion, tumors from my skull to my pelvis, all sat in my room with me that night. AUD-E, the gentle giant from South Africa smiled and kindly spoke in a thick British accent that somehow made every beep of the machines fade away. What day was it now? Friends, magazines, gorgeous flowers and tropical lotions connected the silence of the next two days. Sunday and Chad was gone to make life “normal” for the kids. I had french fries for lunch…and a Dr I have never met started me on medicine to stop the cancer from spreading among other things. Monday and Mom. She organized and I pretended to.

Another Dr…I haven’t met him either…I cover my ears as he talks. Mom explains that I just can’t hear it again, “Ok so I will give you the GOOD NEWS” he says …huh? “Well, we have all looked at your tests and we can’t really find any reason why you are not totally PARALYZED. Every bone in your spine is involved in this cancer from your skull to your pelvis yet you can still move your arms and legs…you should have terrible neurological damage.” “If this biopsy result come back as breast cancer that has gone to your bones, within 8 months of radiation and Tamoxifen treatment you could be in total remission. With medicine, the bones in your spine will regenerate, the cancer will go, you will be out of pain, and the word scan gets used a little more often in the next 30 years.”

These are the accounts of the last seven days. Tomorrow, chapter 2…”God fits in a hospital bed too.”

June 05, 2009

Dent in the pillow

Let me start by saying AARRGGHH! It is 12:55 am and I am feeling all the horrible side effects of the steroids which are the only things that are keeping the pain away right now. I am jittery, starving, hotter than a forest fire, and more than just a bit agitated that this turkey sandwich did not come with mayo or mustard. I think my metabolism is running at hyper speed and I am consumed with the idea that if I really tried, I could churn butter with my bare hands.

The theme from Mash hums in the distance and I really do think that I am going to ask my Dr if I can cut back a little on the 8 mg’s tomorrow…I mean today. I fully intended to write about my experience with the radiologist today but looking back on it, it is still quite a lot to think about and my brain is still not quite in acceptance mode of this new, horrible, surreal, lifesaving, frightening experience.

It wasn’t supposed to be this way you know, but at the same time it wasn’t supposed to “not” be this way either. How’s that? I was supposed to get married and have kids and they were going to grow and get married and have kids, and I was going to go on vacations with them and we were all going to live to a ripe old age and no one was going to get cancer in their back or their front for that matter. And we were going to live each day like we LOVED every minute of it and be helpful and giving…but the earth got in the way…

On the bright side however, I get to be loving and giving anyway, because every night since I have been here, God has crawled into this hospital bed beside me, I always make a little bit of extra room for him on the left side. Sometimes He talks and I just listen, sometimes I cry because it hurts, and sometimes we just breathe. Then eventually I wake up and realize this damn earth is still in the way but now there is a dent in the pillow next to me…

June 06, 2009

Banana bread and piano bar

I have sprung free from the “joint” finally. It feels good I have to say, and I have found deluxe accommodations for the infirmed at a home in Edmonds that serves everything you need until 10pm at which time one of the owners goes “pumpkin” and the other “night owl”.

They do offer a lovely late night banana bread at their piano bar where the piano player is now softly playing a Tony Bennett tune. The ice water is cold here, just how I like it, and I have a running tab… Goodnight.

June 06, 2009

Radiation mask

This is a picture of the radiation mask that I will wear during the radiation treatments. It is stiff and attaches to the table so that your head is not able to move one nanocosom (which may or may not be an actual measurement)

June 06, 2009

Under there....under wear?

Under there....under wear?

The radiation mask goes on AGAIN! This time , for the first time, I find a little courage and ask how long I will have to wear it…a dangerous question because sometimes it is better not to know…you can just keep telling yourself it is coming off any second.

10 minutes. That’s the answer. Ten minutes. I am sure it is the long ten minutes too. The rest of the work they have to do is lower on my body so they don’t need my head to hold still. On goes the mask and up goes the heart rate…“breathe in for 4 and out for 4” I repeat. Enough of these 4’s will add up to enough 60’s to make 10 minutes.

Someone strokes my arm. Measurements and angles are verbally tossed over me and transferred to bits of tape that are then gently pushed against the mask where the beams will aim and shoot…now I know…the cancer is there, and there, and there too. I cant cry in the mask. I start to hum to myself so as not to overhear words like “big” or any number above 1.

The mask finally comes off, the gown comes up and the new undies from JC Penny are revealed. The purple pen starts somewhere near my belly button and then she draws lines and x’s. “This one,” she says “we will shoot from here.” Then she moves down. More bits of tape are documented with precision and stuck straight to my underwear. This hip, that hip, they roll me at a bit of an angle and stick on more tape. “FILMING” someone shouts and they all move quick. I am alone in the room and there is a huge flash of light then dark then the burning smell of metal and then the overhead speakers continue their musical rendition of Smile Though Your Heart is Breaking. The click of shoes on the floor again and it’s over. They help me up and off the table. One hour later as I dress to leave the hospital, I peel the little bits of tape off my JC Penny undies and cry.

June 06, 2009

Sick AND tired

Sick AND tired

“Treatment, meet Laurie…Laurie, meet Treatment” Hey there, this should be ok huh? I mean after all you are supposed to be my ticket out of this mess right? Treatment?

The table is hard and my incision still isn’t quite healed from where the back half of the vertebrae was removed. Contact!!! Next the mask and the tip of my nose is tweaked a little to the left. Today’s visit is supposed to be the shortest one yet so I pick my battles and decided not to pick my nose as one of them. I brought my own music…good decision…my new routine for the next 4 weeks is…uhhh, not starting. More x-rays, more felt pen, more tape, more film, tape, pen, film…now my CD is over and What is going on here????!!!!

PAIN IN BACK!!! Pain in incision and pain inside where the hope-ish shaped spot was a bit ago.

1.5 hours of holding as still as possible. MAD! Oops not mad…cannot be mad…mad doesn’t heal…I find two little red lights on the ceiling and stare at them as I listen to My Eyes Adored You. Kinda creepy…”CAN I GO HOME NOW?” my brain yells very loudly! Treatment…about 5 minutes of actual treatment. That is all I got today.

The car is halfway home and the window is down…air…I feel something…fear? Is it the radiation? Am I just hot? SICK! That’s it…I feel SICK!!! Inside out sick.

Home now, sick, mad, tired, mad mad mad. Ok so I am mad…I was supposed to feel better, shrink tumors, get off pain meds, NOT GIVE UP, NOT GIVE UP, NOT GIVE UP… I really really want to give up. Another brown bottle from Walgreen’s to keep me from running away, because this kind of sick everyday is going to make me want to run. This one is to prevent inside out sick.

Tomorrow I go again…toward the light, health, hope family, faith, healing, humor a 2nd CD and the rustling of a radiation room full of angles…standing room only kind of full…and a bowl for the ride home, which hopefully I will only use to carry the hope-ish shaped spot that I can put back where it belongs very soon.

June 06, 2009

Held

“This is what it means to be held, how it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was when everything fell we’d be held.”

Those are some lyrics to my friend Natalie’s song Held. You can listen to it or watch the video at www.nataliegrant.com

Today I was held…held on the table when I wanted to run, held in good spirits when I wanted to cry, held up by all of you as I sit seemingly alone at my parent’s house. Not very many people get to experience being “held”…you could say that I am one of the lucky ones. There is a very soft blue pillow on the left side of my bed now, and later when He climbs in, I will thank Him for holding me and for how He has whispered to you the ways you have held me too.

June 06, 2009

Waaaaaaaaa

Waaaaaaaaa

Well this is me today. The radiologist office is at the end of a long hallway, which is at the end of a long ramp, which is at the end of a all too familiar drive to NW Hospital.

I stood there in the hallway, took a deep breathe and held back the tears. I held them back again when the gal at the front desk greeted me by name and told me there was no reason to check in anymore…that I could just go “right back”. I thought then I wish they didn’t know my name.

I held them back again as my mom greeted the other patients who were there doing the ever present puzzle that waits on the table to pass the time. She is getting to know each of them that have appointments right before and after me. I never liked Thomas Kincade puzzles!

I held them back again as my incision met the table…buzzzzzzzzzzzzzzz, light on, light off, buzz again, move up, move down, rotate, buzzzzzzzz, film in, flash, dark.

My back protests sitting up…it’s over…see you tomorrow at the end of the long hallway near the puzzle…but I didn’t have to hold them back anymore. Waaaaaaaaaaa all the way home, and then at home, and then again after dinner, and most likely again when the lights go out tonight.

Never thought it would feel good to be a cry baby…but baby, I am going to cry!!

June 06, 2009

Bye bye moisture...hello dry everything!

One quick shot in the stomach and there you are! No more estrogen…see you in two weeks…this whole thing is so weird…I am trying so hard to just keep up with everything mentally, emotionally.

I guess the no more estrogen shot is the ticket. It means no more food for the tumors and thus no more tumors…one shot in the stomach…ok…in three months I do it again. I am going to need some good hand lotion, maybe some good chap stick.

The Dr was happy today. He was glad I took the shot, glad I have treatment underway at the end of the hall with the Thomas Kincade puzzles, glad the vertebrae is healing, glad that he can now put me on the best hormone therapy out there, glad I am getting off the steroids, just generally glad…it’s good when the Dr is glad.

So I walked down the very long hall, out into the grey drizzle,got in the car with a very dear friend and headed back to my Bed and Breakfast Infirmary.

We had strawberries and sandwiches and a wonderful visit and then she left…Then I was glad. Glad for the friend, glad for the ride home, glad for the strawberries, glad that she cared enough to do what she did, glad that treatment was over for the day.

The Dr said that he was on call all weekend and that he would be glad to talk to me anytime…I think I may just call him…when the no-estrogen shot kicks in!!!

June 06, 2009

Round two bell rings

Round two bell rings

Today on Dr Phil…Laurie is taking too many things at once…can she handle it? Has the no estrogen shot thrown her over the edge? Let’s watch and see…

Ok so by my rough calculations here are the basics: Neurosurgery to remove tumor and half of vertebrae…RX steroids and pain medication Steroids destroy the lining of your stomach…RX strength antacids to prevent stomach perforation… delicate balance of diet to prevent “you know what” from the narcotic pain killers…Imodium to prevent the opposite problem…calcium supplement given by IV to rebuild bone…no estrogen shot given to shut “that” all down…hormone tablets taken daily to destroy existing tumors and prevent further growth of new ones…toxic radiation shot at me daily over multiple sights breaking down tumors and red blood cells to boot…toxic radiation causing nausea…RX anti nausea medicine…hot flashes, mood swings etc as a result of the no estrogen shots…RX anti depressants to cover all of those

I was wondering when I was going to arrive at the line in the sand. I believe I have found it…I think I heard the bell for round 2 today…now we start the fight…the proverbial bruises…the occasional blow to the head…I’m not ready but DING!!!!!!!!!!!!!

June 06, 2009

Life moves on

Life moves on

It’s so strange to have life still moving forward without me. Chad’s birthday is Monday and I can’t shop for a gift or make the day stand out in any way. Schedules are changing at school and it’s parent teacher conferences again…I feel so “removed” from the everyday…another totally surreal experience for this mom.

The tearing takes place every morning when I wake up here and know that my kids are off to school without my kiss goodbye or” have a great day” or making sure Joe has the lunch he wants or their hair is brushed or there is money in the lunch acct or all the permission slips are signed or they aren’t being teased or homework is done and packed safely in backpacks…

Then again when they arrive home and there is no “how was school” or stories of recess successes or classes that are just too hard or funny stories the teacher told or “what’s for snack”

How is not having mom affecting them? If God climbs in with me at night I am sure He climbs in with them too…

And Chad…it’s been good for them to go to their dad…good I say as I struggle with feeling less necessary that I thot. Good for Chad to be more necessary… Am I catching myself being thankful again? How can that be?

June 06, 2009

Good versus evil

Good versus evil

It’s 3ish and it hurts. Usually the pain pills I take before I go to sleep cover me through the night but for some reason tonight they haven’t done their job quite as well. So do I cry because it hurts, which is what I would like to do, or do I take another pill, which I really don’t want to do? I guess I will decide here when I am done.

The first few hours of sleep each night I am finding , are a battle subconsciously. It’s very strange the dreams I have in those first few hours. They are always survival…as if my body needs to remind itself that it is really fighting for it’s life each night. Like my brain is saying “just because you watched Extreme Home Makeover’ tonight before you went to bed doesn’t mean nothings wrong you silly girl. Here let me remind you that this is a battle…

So the forces of good and evil do their thing in and around me…then, just like at the hospital when I didn’t want to hear the “bad news” being told to me over and over again, I just close my eyes and try to fall asleep as fast as humanly possible.

I think sometimes, that if I listened close enough, I could hear the clanging of swords, and the whoosh of angles wings, but I really don’t listen on purpose because I really feel like I might hear it and then what do I do? It should comfort me I would think or would it scare me? I really don’t know.

So the battle goes…I have decided to take another pill and let tomorrow, or this morning, arrive without hurt. That I suppose is something I can do for myself. Thank you for being in the battle with me.

June 07, 2009

Foods that heal

Foods that heal

Foods that heal…sure I am eating fresh fruits and veggies…a lot more now sadly, but then there are the real foods that heal…yesterday’s foods that heal were a Marion berry scone from Penguin coffee in Anacortes…and for lunch, an Oriental Chicken Salad from Applebee’s pick up. These were truly foods that heal. Oh ya there are more…the pecan pie that Sue took to Chad for his birthday when I couldn’t be there to do it…and the casserole they ate for dinner last night…and the cake Chad’s mom made for him… the $5 Em got for lunch yesterday when she ran out of lunch money…all foods that heal in my book!

It’s almost 7am and my stummy is now feeling the need for some foods that heal after all this…thanks you guys that I am not going “hungry”…thank you thank you thank you!

June 07, 2009

Reflection

I saw myself today…it was bizarre and totally unexpected…I was laying on the radiation table, a Plexiglas square is slid in front of the lens of the machine and the button is pushed. The table I am on slides down…my eyes are uncharacteristically open and I see myself…like a Lifetime movie of the week…no denial…X’s lines arrows and circles marking “treatment” areas reflecting back at me…for now there is no drifting off with the music, I don’t even think I remember hearing the music at that point. RADIATION was all I thought…

Then I closed my eyes, not to avoid seeing myself but to sit with it for a minute and see if I could finally see it differently…to see it helping me , fighting with me against these tumors, an ally…I think I may be getting there…slowly.

About 1/3 of the puzzle is done…it’s day 7…whom shall I fear?

June 07, 2009

I'm melting!!!!!!!!

So…it was Dr day today…Dr Landis, the radiologist who doesn’t look or sound a day over 19…after my treatment I was nestled into a exam room and waited. We did our typical review of pain medication and how was I feeling etc…then…against my “normal”…I asked another question. I told him that everyone had said that I was shorter…he chuckled, flipped to the back of my chart and there in about 8 different colors was my spine and the outlines of the tumors…all he wanted to do was look at the disc space and compaction etc…but there I sat staring at the very thing I didn’t want to see…tumors…I couldn’t blink or close my eyes…it was no good.

There were red places and yellow places and white, and blue and green and I didn’t know what any of that meant and I didn’t want to know…but outlined in red were the tumors…only the ones that were on this 8.5x11 piece of paper in the file…but isn’t that enough? The one that required the surgery was larger than…than I am comfortable with…I still can’t process the thought of it very well even tonight.

As I stared at the page Dr. Landis began pointing out disc space and vertebrae stacking etc…he said that I wouldn’t “grow” again but that the bone building medicine that they were giving me would prevent me from getting any shorter. Stinkin’ tumors! They really messed me up today.

Tomorrow marks halfway through treatment. I see the neurosurgeon tomorrow…I am NOT going to ask any questions…denial sounds good right now…too much self improvement for one day I think. Dang these life lessons.

June 07, 2009

Mary had a little lamb....la la la la la

New x’s and arrows have brought on new issues…there is more in me than bone and it seems like it’s been “hit” …my stomach that is…

One of the sites that they are radiating is the surgical site on my back that had the tumor that was pressing…it’s about equal to my stomach in placement and they zap it from the front and they zap it from the back…and I think they zapped a little more than the bone the past few times…good grief…

It was Dr day again yesterday…this time it was the neurosurgeon…remember I told you I wasn’t going to ask any questions? Well I didn’t! Sadly tho, he volunteered some info that freaked me out…is still freaking me out…too much too much too much …there is a tumor on the rt side of my skull…last year it began to make a small bump on my head…who knew? Well the concern is that it was expanding inwardly as well and they don’t want it to put pressure on the brain. AAAAARRRRRRRRGGGGGGGHHHHHHH! La la la la la…Mary had a little lamb, little lamb, little lamb…

The hormone therapy is supposed to make it shrink…the little pill that I take each day that sucks the estrogen from my body is supposed to suck the life out of this as well. How does one not obsess over it now? I ended my email the other day with whom shall I fear? Well, if you ask “Laurie” Laurie, she would say information… so I am working on that…not reacting to the information but responding to “the truth”.

June 07, 2009

Brick wall

Brick wall

All in all it’s just another brick in the wall…the wall I hit Monday…like a cartoon character where it leaves the indent of your face…that was me…

Nausea, fatigue, you name it and I was feeling it…then I cried…and cried some more…and a little more for good measure…because I did not NOT NOT NOT want to go back again. But then I ask myself what choice I have and I don’t have one really so there you go. Hence the tears.

Then I slept…no, then I slipped into and comatose/denial like sleep from somewhere around 4 to somewhere around 10…and I woke up and it was dark and I was still feeling sick and it was just plain awful.

Then somewhere in the middle of the night…when I was far enough away from the treatment, I began to feel better. By morning I ate one of those 1,000 calorie Costco muffins (yum) and drank G2 and was thankful AGAIN for all the thousands of prayers that float skyward so that I could get up and go this morning.

After treatment the Dr wanted to see me so I slipped into the exam room and we sat and talked about “medical management” of the symptoms…then I found out that I was the FIRST patient that he had ever treated 4 “fields” on. And that he knew from the beginning that it was going to be a rough go. Then Shannon, who is helping with the !@#$ Thomas Kincade puzzle, said that I was a trailblazer not a guinea pig…not so sure… 8 more sessions!

June 07, 2009

It's all about the Rice Krispies

Well I am writing when I can…..I struggled with how I am going to say this because I didn’t want to sound like I was complaining…..sick is now the operative word. The only thing I can do now is just concentrate on the number of days I have left. Two more days this week and 5 next week. But it’s hour to hour now. It’s all about the Rice Krispies.

June 07, 2009

Do you hear what I hear

Shannon who’s mother comes in after me and who helps with the !@#$ Thomas Kincade puzzle said “trailblazer” but I still say guinea pig as the blood trickled in my ear this morning. Good grief.

I had noticed it getting harder and harder to hear and so when the blood in the ear thing happened figured I should check with my 19 year old Dr and find out what was going on.

Surprise…it’s a side effect of the radiation. It will make the ear canal swell and irritate the outside of the ear and blah blah blah blah…blood and hard to hear and wax and blah blah blah…RATS!!!!!!! So I sat there humbly while the Dr cleaned my ears and I could hear the rustle of his lab coat loud and clear. He mentioned doing it again next week…it’s a date!

I listen to my friend Natalie Grant’s CD during treatment everyday…today was the Awaken CD…I hear new things each time I listen and today I heard…”I’m loosening my grasp, there’s no need to mask my frailty”…I’m trying…oh if we all could …but I’m trying.

I swallowed the golden pill just a few minutes ago…which is one reason I decided to write this now instead of later today…you see I can’t throw up now for at least an hour and I figured this would help distract me…thank you…it is a new pill for nausea and it costs like $2000 for not even 10 pills…but the 19 year old Dr gave me samples…one per box…two boxes…to see if they work better than what I am taking…for Pete’s sake shouldn’t they at that price? anyway…we will see if it really is worth it or not…wish me no barfing!

June 07, 2009

The Golden pills are not so golden

Ok so the golden pill doesn’t work!!!!!!!!!!!!! Well it works as well as the other pill I was taking which really only works in the morning…which is better than nothing because I wouldn’t want to be in the mask and have to…you know…wow that would be horrible. But TGIF…which I think I will write on my belly tomorrow and surprise everyone at treatment!!

I need some good ideas for the last day of treatment…something fun or funny to celebrate…did I tell you about the old guy who was having his pelvis treated and on the last day showed up in woman’s red and black Lacy undies? Gross but funny!!

So I have added ice chips to the rice krispies…not in the same bowl…I am just so thirsty and if I drink water then my tummy “rejects” it to put it nicely. It pretty much rejects everything after lunch…I wonder if Saturday will be any different…everything madly trying to repair itself from my head to my legs…healthy tissue desperately trying to march back from destruction… My hair is the only thing that hasn’t been affected…yet…I can only hope…

laurajane

I am the mother of two kids. I am fighting my second battle with breast cancer...this time it has gone to my bones...lots of my bones. Of course I would like to survive this and I am trying hard to do that very thing....but a cheerful heart is good medicine too so as I blog about all of this there will be both tears and laughter....but it will always be "the true story".