Why hast thou forsaken me?

Just kidding. Sounded like a nice dramatic header.

So, my last CT scan wasn't too hot. Some activity with my lymph nodes around my stomach area now. Why is it all about the lymphs? I forgot to ask Dr. Dummypants that.

She ordered a PET scan which is a CT scan plus some other scans to give a more accurate picture of what's going on. You get a glucose sort of solution into your veins and then the sugar is attracted tot he cancer cells so they can see where activity is taking place.

I was set for the PET scan on the 16th of November. 24 hours prior you have to eat a very low carb diet so that your sugars are not mucking up the results.

Dr. Dummypants said, however, that I would not need to take my normal steroid preparation (some steroid pills and Benadryl because of my allergy to the IV contrast for CT scans) because I wouldn't be getting the usual CT scan. Lovely, I hate taking the steroid prep.

HOWEVER...

when the scheduling nurse was talking to me she said "I'll call in your steroid prep" and I said "I don't need one" and she said "yeah, I think you do.. " and I said "could you please check?". So she checks and comes back saying "yeah, you need it so I'll call in the prescription yadda yadda".

As it happens, steroids can really raise your glucose levels. For the PET scan your glucose needs to be under 200. No problem.. except if you're taking steroids.

IDIOTS.

So along with not eating carbs for 24 hours, I had to wake up twice in the middle of the night to feed myself steroids all for nothing.

My sugar level was 240 and they were unable to administer the test. I'd been hooked up to an IV already (seriously how big is that needle anyway?) and sat there for 40 minutes getting pumped with saline when the nurse came in to tell me I had to go home.

I was angry but I always shrug that stuff off. I know they don't mean it but I've run into a lot of these types of things. But this time I KNEW I wasn't supposed to take the steroid prep and the woman did NOT, in fact, check. The nurse who assisted me before the scan was supposed to happen said they never give IV contrast... it's oral. So either that scheduling woman lied or misunderstood the contrast IV/oral.

ANYWAY

I have another appointment for November 28th.

I'm feeling pretty awful too. It feels like my lower back hurts and my kidneys. My back is very tender like it's bruised. I also have a lump on the side of my neck. JOY!!

It's really quite torturous at times. The fear, the anxiety, the waiting. It's an endless cycle. The only time I do feel OK is while I'm getting treatment. Physically it makes me feel poorly but mentally I think "well at least I'm doing something about it".

It's exhausting.

I guess I should try some yoga or SOMETHING to decompress.

Just an update. I don't feel like unlocking any interesting thoughts.

Shhh... quiet...

ZZzzzZzZzzzz

Raawwwrrr!!! *dinosaur stomp*

That's how I feel. My anger/annoyance/aggravation conjures images of a hulking Jurassic giant stomping around and shaking the ground.

I'm really really #$%*@ sick of medicine. People /in/ medicine, to be exact. The health field. Whatever you want to call it.

I had several appointments yesterday.

Radiation was @ 3:45 and I had a port flush @ 4 pm. I get to radiation and they tell me I have to see the doctor after my radiation. "NO" I say, I can't. I have a 4pm appointment. They inform me I have to see the doctor once a week (for Medicaid reasons). He breezes in, we exchange "hello's" and Medicaid forks over the $$. I get it. However, they cancelled my appointment yesterday (which I knew included the doctor visit) but didn't mention it would be made up on Friday.

Whatever... it has to be done. I despise being late but these things can't be helped. Also, Jill has to be to class by 6 pm (and she drove me to these appointments).

I get called into radiation. This is how the radiation goes;

1. I lay on a flat metal table. I raise my arms over my head and they have a mold for my head/arms so I lay the same way every time. I remove my gown/top and they place a sort of napkin with a hole in the middle on my chest. It's not the most comfortable position and it gives me back problems. Currently I take Flexoril and that helps relax my muscles.

2. The machine extends around me on all sides and it takes 2 x-rays. I think, from those, they make the zapping map. A doctor approves it from his screen (he checks the images from somewhere in the building) and then the table moves remotely into a very precise position.

3. 4 zaps come from 4 different positions. They have to change a sort of filter on the zapper for each position so you hear the little techs running into the room and sliding in the plates.

So anyway, after the x-rays yesterday, I just laid there. I closed my eyes for a while and relaxed a bit because sometimes it takes a few minutes. Then I feel the table move and we're off! BUT NO. Nothing happened for 20 minutes. I waited and waited and started to think "maybe something happened?". My thoughts raced and it was so quiet in there (you're in a room with lead walls, mind you) and I thought of the San Diego black out that just happened and how my friend thought it could be the apocalypse. What if that happened? Everyone was instantly incinerated by a nuclear blast but I was safe inside the lead room. What if they just forgot about me? I might be having a muscle spasm... do I feel funny? My blood feels cold. Or is it hot? I feel I may faint.. good thing I'm laying down. I'll wait 5 more minutes... (I count in my head)... OK, another 5. Finally I say out loud "Hello????". I wait some more and I can't move because they will need to re-adjust me and take another few pics to re-align... and then I pretty much scream "IS ANYONE THERE???". My breathing became a little shallow and I started to sweat. My heart was beating fast and I was just trying to reign in any sort of untoward reaction I may be having...

Then the nurse came in and said they were waiting on the doctor.. (effing doctors). I said I was about ready to freak out and she patted my arm. DON'T PAT ME!!! So condescending. Then a voice came over the intercom "it's a go" so we were off.
The appointment on the day I needed it to go smoothly, was the longest radiation experience I'd ever had.

Then the doctor's visit. They usher you into a room on the same floor. They shut the door and a nutritionist and a nurse visit you before the doctor. They are in and out quickly and would the doctor be as quick? OOOH no. They're always late. LATE LATE LATE.

I imagine my doctor sauntering around the atrium with his hands in his pockets leaning over and smelling the flowers. Lackadaisically meandering around the building.. bending down to rub a spot off his shoe for a while. Smiling at his shoe and then standing upright again. Fiddling in his pockets until he realizes there's a lot of change in there so he removes it and flicks them one-by-one into the fountain from the second floor making wishes about his next trip to Italy and for the quarters he hopes his wife isn't having an affair with her personal trainer. Then he sees the reflection of a clock in the water and thinks "time... time.. I have an appointment!!". Only then does he make his way to my holding cell, takes two steps into my room, asks if I feel "ok" and then we say our goodbyes. Voila!

This pushes my third appointment 45 minutes late. I sent Jill up to that floor earlier to see if it was OK that I was soooo freaking late.

Mind you, I hate being late. It goes against every fiber of my being and I get stressed out when I think I may be late. I, myself, am never late. I only get stressed when Jill is making me late.

Next is my port flush. I have a port nestled in my delicate decolletage. It looks like a wolverine had a bit of a time getting to its prey and gnawed a sloppy hole in my chest. I guess the skin on your upper chest doesn't heal so nicely. Scars easily, I mean. Anyway, they have to flush this port with saline so that it doesn't get clogged with your blood. -_-

The nurse was filling in for my favorite and most beloved Nurse Amy. She had moth ball breath, for one. Secondly, with the first poke she missed my port. These pokes are unlike any others that I've been given. It's particularly sensitive there... so she has to poke again with a longer needle. UGHHHH. She was very apologetic about it, though.

So, when I got home, I was a bit of a bear.

My mood has been sour for the past few days. I get up and then really get irritated for no reason. I do need a good cry. Hmmm... or maybe I can pinch a baby when it's mother isn't looking. Now that would make me feel good.

This morning I was supposed to babysit early... like 7:45 am. I got up and got ready and they were a no-show. No one's fault, I didn't get the text, etc. but y'know...

So that's my bitchfest for the day. I do feel a bit better. :D

Ahhhh.. the sweet savory scent of Radiation..

OK, it has no scent, but the radiation-oncology center does! The chemo infusion center has it's own peculiar smell too.

So, it's been 15 days of radiation. I have 13 more treatments (I think). I should be done around September 21st.

This time around they are zapping my lymph nodes in the mediastinum area. Up and down the center of my chest so my esophagus is sort of in the way. It's getting irritated and painful to swallow at times.

My back is killing me too. Just this nagging ache in my lower back. You must lay on a metal slab, basically... and they have a mold made for my head/shoulders and I have to hold my arms over my head on the table for about 15-20 mins. This puts odd strain on my lower back.

I'm very nauseous as I'm typing this. Nothing much has given me nausea throughout all of my treatments so why now? it's weird.

I'M SO over this. I don't even want to talk about it or pontificate or be introspective or interesting. I just want to be done. I'm a sour puss patient. I'm getting grouchy. It just seems relentless. I've been getting treatment since the beginning of February and it's like ARE YOU EFFING KIDDING ME RIGHT NOW???? 8 months of treatment when I'm done. Tears are welling up in my eyes as I type this because I am feeling just a teensy bit sorry for myself. It's been hard on my body, hard on my spirit. Jill's been great but I know it's hard on her too. We try to stay positive and maintain a level of normalcy but under that surface is a lake of tears.

We're thinking about moving. We've got our eye on a few houses and I really want to change but some part of me is clinging to my old place. Also I think of all the things that need to be done and I'm just freaking EXHAUSTED. Seriously. We have to hire people to move us because there is no way.
So many expenses to think of and my tummy hurts so I'm done writing this.

SUNSHINE AND LOLLIPOPS AND.... stuff.

Shitballs Willie!

Pardon my French.

I don't know where that phrase came from but sometimes Jill says it when something bad happens.

I had another scan on July 8th and my lymph nodes are enlarged again. Dr. Dummypants says it might be from my horrific chest cold but it's probably a bit of that and a bit of the cancer bulking it up in size.

Unable to take the carboplatin as well, she thinks it just wasn't enough with the Taxol.

Enter radiation. I had my consult with the radiation oncologist the day before Dummypants and he repeated everything I already knew but didn't mention anything about my lymph nodes. He said, as always, it's up to me to do radiation or not. With the size increase, there is no option. I have to do this... it helped with my pelvic region.

The upshot is, no spreading. Still just these obnoxious nodes so.. gotta zap those babies. I guess I can do a shorter treatment for radiation because I just can't stand the thought of doing this for another 5 weeks. He can up the dosage and make it a 2-3 week stint. The side effects might be worse but I don't care at this point. I'm over it... I've been doing this crap for 2 years now and I just want a break. It's not only really taking a toll on my body it's make me a bit crazy as well. I'm just tired of it all, really. Done. DONE AAAAND DONE.

I had to come back and add to this post. I'm pretty pissed off. In fact, I'd use the phrase "furious". I guess it's just fear masking itself as anger. I'm scared as hell. Mostly I'm convinced that this is nothing and I'll "get past it" but I fear it's going to push and pull me around for a long time until it decides to take my life. I HATE IT.

It makes me think stupid things like "why me?". I dislike when people ask that question. I think "why not you?". But lately I've been thinking more along the lines of "what did I do to deserve this?".

I do sort of believe in karma. You get what you give. That's where it feels bad. What did I give to get this? It really is unfair but life is unfair, I know this. I'm rational. So I'm mad. Really mad.

I cry angry tears and then pitiful tears and then a few more angry tears and then I'm done.

Sweet Sweet Relief

I am SO EXCITED that my last chemo is coming up this Friday.

The fatigue this time around is really out of control. I can barely manage folding clothes. Even showering is exhausting. It just leeches every bit of life force from you.

To top that off, I got a supremely gnarly cold last Saturday that is STILL working itself out. The coughing is a rattling freak-fest. My lung capacity is very low.

Sorry, the rest of this is going to be the rantings of a chemo-fied lunatic.

My last visit with Dr. Dummypants really REALLY angered me. She casually said that the cancer would come back..

We were like "really?.. uh... " and she kind of closes her eyes and nods "90% chance it'll return". She gives me a gentle pat like "there there". OMG I wanted to cut her arm off.

I know my cancer is aggressive. I know all of it.. how relentless it is, and that it grows slowly but just keeps coming.

Why tell me that, though? Why put a percentage into my head? Healing is 99.9999999% in your mind (I believe). Who is she to say that? She doesn't know me. Plus, I'm her only patient ever with Large Cell Neuroendocrine cancer. EVER. Did she get this number from a journal? Perhaps she saw it on Wikipedia. MY GOD I dislike that woman. I really need a new doctor. I'm so aggravated about it. Stress isn't helping, I'm sure.

ANYWAY, last day Friday which will be so good.

Radiation /might/ be happening but I won't know for a few weeks. PLEASE please please don't let it happen. I hate it so much. I just want some time to live a normal life and not always be dealing with this.

Lalalala... sunshine and lollipops.

Pfffft.

Sometimes when I need to nap and it's too light out, I put my woobie over my eyes. It's a giant 100% cotton cloth I got from a friend as a gift for a head wrap. It's far too large for that but OHHHH my... so soft, so sweet, so loving. I drape it around my head and neck at night and when I get a surge of heat, I take it off. Moments later when it's freezing, I casually put it back on. I love it. Living bald is quite an experience.

I digress.

Swimming up from sleep with the woobie over my eyes, I heard a distant droning. Immediately summers shuffled inside my mind and I was transported to Oxbow where we'd spend weekends in the summer before dad built the cottage.

It was hot and I was lying on a lounge chair under the green fiberglass awning attached to our trailer. The droning is a boat on the lake. It's a beautiful sound in my heart... an enormous cursor to my childhood summers at that lake. The breeze is cool and sweet and it might have to do with how we're nestled on top of a cliff. It was a cliff to me then, now it probably would be a gentle sloping hill before a drop off to the lake front.

Along with the droning, the air is warm in my nostrils and fragrant with Earthy smells. One foot on the ground with my toes wiggling in the silty sand to get to the cooler, damp soil beneath. Birds calling to each other in the canopy high above. I open my eyes and see the glowing green of the sun filtering through the corrugated awning. Shadowed leaves and branches paint a moving mural on the surface and the sun moves through it all in a chorus of light. It's so potent, this memory, so real that hot tears work their way into my eyes.

I think the words and then I say them out loud since no one is here to hear... "I love you, Earth".

Good News... for now.

Today, before chemo we had an appointment with my oncologist (Dr. Dummypants) and the scan I had 2 Mondays ago looked good! My lymph nodes were back down to normal size (the swelling wasn't very significant to begin with) and no other problems were found! VERY happy. Of course, I take it for what it is. Good news for now. Doesn't mean I'm free & clear, just means the chemo is doing its job. Good times!

For the first time, Dr. Dummypants was like "you're really doing great, Melissa.. I think this will be good.. you'll be fine". This, she never said to me EVER. My first appointment with her was very grim. She was straightforward and did not nice words. She basically said at that first appointment that I had a very aggressive cancer and she really didn't have high hopes but we were going to attack it aggressively and do what we could. We cried afterwards. I thought she was horrible, but really, she was just being honest from her experience. Granted... by her admission and other oncologists we saw, not much is known about my specific cancer. It's not, as she called it "your garden variety cancer". Large Cell Neuroendocrine Carcinoma/Tumor was what they called it at first (being that tumors were inside my uterus). Now they just say "Large Cell Neuroendocrine Cancer".

Also, not sure if I had written about my weekly chemo. It's really fantastic. NO LEG PAINS!! I don't know if that's from the lack of Carboplatin or just less dosages per week of the Taxol. A Taxol side effect is leg pain so who knows. I'm still fatigued and feel like I have the flu for a few days but without that pain it's like I could do this forever! Although you kind of get used to feeing tired and like shit so when I'm off it, I don't realize how good I feel.

I gain weight because it is far too taxing to exercise. I should just not do as much as I used to when I did exercise. Little bits. Baby steps.

I'm riding a 'roid wave right now. The steroids always make me a bit hyper and wide awake. I probably won't go to sleep until 5 am again. I have projects to do anyway so maybe I'll work on those. :P