today's thought

What I hate today: Cancer.

What I’m thankful for today: Even if my husband doesn’t find me attractive, he at least acts like he does.

I’m not as strong as you may think

But I really do appreciate the encouragement!

We’ve all seen the silly old 70's or 80's chick flick movie where the woman breaks down and sobs uncontrollably in the shower. I used to think that chick blubbering in the shower was a bit over the edge and overreacting, but now, I can identify with that woman. You want to be strong for people around you and your family. And damn it all if the only place you can be alone for 5 minutes and break down is the bathroom. And not always that long. There are days, I have a break down and sob uncontrollably. Snot running and all. In the shower (which is a good place because it actually hides the fact that you've got snot running) Or even sitting on the toilet (without the benefit of snot hiding, so a tissue is required).

I try to stay away from the doom & gloom on the blog. Which in all reality may tick off other cancer patients. And I’m sorry for that. But I’m just like the rest of you “survivors”. The reality of it is, I have days when all I think of is, I’m not going to make it. What happens to my family if I don’t? The odds aren’t that high that I’ll make it. My cancer is a serious, aggressive, fast spreading mutating cancer. Then I try to talk myself into, Yes, I CAN be one of those 23% or 40% or 8%. What ever percentage a research shows. Then I think, well, those percentages were the ones with stage I or II or low grade, while I have Invasive carcinoma, cribriform type, metastatic High Grade Stage III with extranodal extension (-30 nodes). And it’s really hard to feel otherwise when you feel so horrible. With odd pains you can’t even describe… to anyone. Regular daily or even sharp pain is non existent and replaced by, I don’t know what the hell this is. It’s almost a burn or a sting, but not quite. It just FEELS like a dead chunk of something. Dead cells, dead muscles or innards TRYING to function, but not quite up to the challenge. You don’t understand them and it scares you even more. You almost give up. I almost give up.

Then, a day comes when I feel a little better. And I try to pull myself up by my bootstraps and tell myself… ok enough. I CAN fight this. I’m not ready to go yet (though I know it’s a great place I’ll go to & I will come back and haunt (or talk to) you!) I’m not ready yet. I’m not done here.

I have some more learning to do.

I have some more teaching to do.
I have some more bitching to do.

And damn it. I want to do it. I want to do it right. Do it right & at a slow pace. I need more time for that. Damn it. I will claim that time I need. Or WANT.

The days when I shake my head at the research data and say to them "your research is screwed up or off" or "I’m different" may be farther between then they should be; But I do have those days when I’m SURE I’ll be one of the lucky ones to change those statistic percentages for the better.

Not sure if that makes me a “positive attitude” person or a person “in complete denial”.

yesterday's minor surgery

I didn’t have to spend the night in the hospital. It seems the vein had collapsed & clotted, but they were able to do Angioplasty and remove the clot. Though I have to say, fear creeps in when I feel the same old feeling of pain in that same area. I’m trying to stay positive.

And no, I didn’t have a gusher & spurt all over (not while I was coherent anyway) but I did ooze quite a bit afterward out of the dressing…. Ick.

○ Anyone else have angioplasty?
○ Did it go well with no further surgeries needed?
○ or did you have to go back for a stint?
○ or anything else?
○ Redi Whip?

Speaking or Redi Whip....
the male nurse was telling me how different people act differently on the injection he gave me... some fight it & stay awake, some fall asleep, some jibber jabber & while he may repeat parts of what he hears, he NEVER reveils the source. He did tell me one funny story. (which I'd love to repeat, but it isn't mine to tell) But it didn't occur to me till I was on my way home, holy crap, was he trying to tell me I felt care free and maybe said something I shouldn't have?!?!
((maybe that story IS MINE to tell?!?!))

Hell No, It Won't Go

Clot does not seem to have improved. It is blocking totally. Located in the right sub clavicle artery. Tomorrow (Tuesday) I go in and they will try to remove at least some of the blockage so there is some kind of flow. Currently there is “no flow” at all. I imagine having a flow would be better for my treatments……

I swear. I do way too much research.
Upon searching for a picture of the sub clavicle (so we can have a better understanding of why my whole arm is swollen) I found some very interesting information pertaining directly to me. Finding this information makes certain symptoms I had a few weeks ago VERY clear to me. And pretty much ticks me off. Why didn't the doctor pick up on it? I know they can’t know everything all the time. But if you only deal with chemo through ports etc, in this particular artery, which is quite normal, then the symptom of marbles under the arm pit and growing larger causing discomfort and pain, should be a clear sign something is wrong. At least one would think so. I had and reported that symptom before my arm swelled & they found the clot…..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
(( the following is from www.biosbcc.net/doohan/sample/htm/COandMAPhtm.htm))


"Lymphatic capillaries converge to form lymph vessels that ultimately return lymph fluid back to the circulatory system via the subclavian vein. The presence of one-way valves in the lymph vessels ensures unidirectional flow of lymph fluid toward the subclavian vein.
If excess fluid cannot be returned to the blood stream then interstitial fluid builds up, leading to swelling of the tissues with fluid, this is called edema."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So… I imagine my lymph nodes were backing up before the arm swelling began. And this could mean I now have lymph-edema in BOTH arms now?

I’m thinking I’m glad I switched doctors last week. This one is taking more aggressive action.

With this picture, you can see the sub clav artery (#11) supplies quite a bit to the arm & it makes sense why it is so swollen.....

http://www.shambles.net/schoolnet/countryreports/myanmar/ict_lessons/science/G-6%20Body%20System/web/cir-e5_files/Cardio.htm

In any event, I go in Tuesday morning. See how much they can get hopefully without my now thined out blood spirting around too much.

Pulled the line

They didn't bother with a scan. They could tell I'm all clotted up. It would seem there are more then we'd like to see. Some in legs too. They pulled the picc line. We are now working on a last resort for the remaining 3 treatments. Insert a short picc line at hospital, get treatment, pull line right away. Now, they just have to figure out WHERE they can get one in. I don't want to even say where the suggestions are and jinx it going in those areas.
I'm just gonna pray they can still use the arm without any further complications.
Going back again today....

Damn it more problems

PICC line problem.....
Swelling began again Saturday & getting progressively worse. I'm going in now to be assessed & they will be doing a scan to check for more clots. Apparently, the clots are occurring because of chemo, and the cumadin (warfarin) doesn't seem to be working for me. ProTime & INR Numbers (blood thinning) haven't stayed stable. The line may have to be pulled out. Last resort will be to have a short line installed day of treatment at a hospital, have treatment & line get pulled out right away. For each remaining treatment (3 more). Possibly, daily stomach shots till God only knows when.
More prayers.
Please.

Nitrous oxide anyone?

You ever been in a house where you touch the refrigerator and either the kitchen sink or stove at the same time - and you get an amazing jolt of electrical energy? Well, that’s what it felt like when I had the PICC Line installed. They hit nerves along the way sending what feels like large zings of electrical shocks down the arm into the hand…. only you can’t stop it by letting go, you just lay there, inform them, to which you get an oh well “hang in there” response. I was calling it a Pick Line instead of PICC, which I think would be a better term for it when you feel like you’re getting “picked on”.

I used to have the kind of veins that anyone inserting a needle would just drool over. They were picture perfect great. And now they’ve have become hidden by swelling & weak making them apparently hard to work with. I was originally told they’d probably give me some type of sedation, especially since every thing that has any nerves in it seems to have become so over sensitive from treatments even skin.
But they opted only for a “Novocain” type shot. Geez even shots hurt now so much so that my palms begin to produce their own un-zen-ish waterfalls. I never had sweaty palms in my life.
I swear to god I’ve never been a big baby about this kind of thing. I’ve had more surgeries in the past 15 years then I can could on my fingers. I think my toes are about used up by now too.
BUT….
DOESN’T ANYONE REMEMBER LAUGHING GAS FOR CRYING OUT LOUD?!?!
Feeling of euphoria – that’s a welcome feeling
Hallucinations? I’ll work through that for the euphoria trade.
No veins, just breathe. Why can’t they use that?
Geez, give me an upright can of Redi Wip for me to suck on at least.
Why do humans have to "just hang in there"?

Anyone else have a story of a time they wish they had some kind of sedation?
dealing with children? boss? surgerical procedures?

Um.. yeah... no...
I want THIS 66666

Clots & Herpies

(if you only want the funny, skip down to the last paragraph)

One day I noticed my hands seemed red. Like someone who has bad circulation or high blood pressure. I didn’t make a stink about it, because I figured everyone would think I was being a big baby or making something out of nothing…. A couple days latter… well, long story short, something was really wrong (along with numbness on one quarter of my face, down my neck, swollen arm)…. A trip to the hospital revealed my blood clotting. There was at least one at the site of the medi port. (interestingly, I realized later what my platelet count being quite high meant. First time it was 155, the last time it was 499, which means blood thickening. Apparently the person, who drew my blood that last time, didn’t pay attention to that & just tucked it away in my chart. If only we had a jump on the blood thinners & daily shots in my stomach, perhaps I wouldn’t have had to have surgery to remove the port, with still 4 treatments left.) After a week & a half of bringing me up to thinning blood at 2.2 with shots in the stomach (including Saturdays & Sundays at the hospital) and coumadin it dropped down to 0.9 in just 2 days (because I had to stop taking the meds & let it thicken again for surgery). The needle sticking before surgery was nothing to be desired. How many failed pokes in my swollen clot side arm, along with failed attempts to get a line in my foot & ankle (they kept poking THROUGH the vein) I had to let them go in my left arm, which is a huge no no when you’ve had any lymph nodes removed (again, I had 30 taken). WHY? Because then you risk developing swelling in the arm, hands, fingers, that will never go away once it’s there. One nurse almost said elephantitus then changed it to a more technical term. I had to start the shots & orals back up. Now after a week it’s back up to 2.5 (they need it to be between 2-3 so that it’t thin enough & the body can try to dissolve the clot on it’s own.) Now, my left arm is beginning to swell, but I don’t have a good arm to compare to show anyone how much.

So, now the port is gone. They say they will try to get into a vein for the next treatment and after that I need to get a pick-line. HA HA Ha, they really thought (with what little experience they told me in the beginning they have with getting a vein, which is why they prefer ports) they actually thought they’d be better at getting a vein & not collapsing it with pushing treatment when an anesthesiologist couldn’t? Yeah. Ok. Sure. They broke through the same vein a couple times & gave up. I missed my scheduled treatment. Which has repercussions of its own.
But, I’m scheduled for the pick line Tuesday (5/20) and chemo on Wednesday near a week late. I’m guessing this throws of the entire schedule…. Scared again. I know this has great potential to be painful.

In the middle of all of that…..
2nd Chemo, we decide I won’t take Neulasta because of the harsh reaction I had. Right?
So… just when I feel like I can actually get up myself & I gain a little strength, along comes a cold sore, and the red spots on my head start to turn to itchy bumps. White blood cells are declining leaving me with nothing to fight the cold sore with, and they think the bumps on my head are shingles, which could be pretty damn serious without immune systems working. More meds are assigned…. I go pick them up. Now, I know cold sores are one form of Herpies but I didn’t know that about Shingles as well.. so, the new young woman at the pharmacy passing over my medicines in the drive up window is looking at me pretty funny.
Odd looks & sideways too…. I really didn’t understand why she’d be looking at me that way. Until I got home and opened the instruction sheet she folded up. In big huge bold letters it says “this medicine is used for GENITAL HERPIES”…..

funny how that phrase “genital herpies” was in BIG BOLD and CAPITAL LETTERS on that sheet. TWICE! But “shingles” was in regular print. I felt like running back there and telling her "NO! I DON’T HAVE GENITAL HERPIES! JUST a COLD SORE & MAYBE SHINGLES! NO, REALLY!"

Instead, I just had a laugh about it.

so sorry

I’m sorry to everyone I have not called.
I’m sorry to everyone I have not called or e-mailed back.
I’m sorry to everyone I have not personally thanked for the kind
things you’ve done or sent or the prayers.

(I immensely appreciate every card & well wishes, prayers & cookies…. Everything I receive I am truly thankful for deep in my heart.)
THANK YOU!


Just when I feel I’m gaining some bearings and maybe can begin to concentrate on those things, the rug gets pulled out from under me and I lose my ground.

It is really hard to “stay positive” when you get beaten back down. There are days when I really want to smack someone that says “keep positive”. But there are days when I REALLY need to hear it.
((I’ve had some setbacks.))

Night Shift

Bobby’s job was prolonged, which is a great thing! Unfortunately, he had to go to night shift to do it. While everyone else received their official & final kiss-off notes, we will be wondering when he will get his & if he will have as much notification time as the others. But for now, we are happy he was offered this “extension” which helps my situation. Sarah misses her Daddy though. She misses watching Funny Home Videos with him & trips to the cottage. I think she even misses him picking on her like a big brother would. She is also worried he'll get into a car accident and she won't know because she'll be sleeping. I don’t have the energy to do things with her I’d normally do, which makes Dad’s screwed up schedule (and working Saturday & Sundays) feel like a double whammy for her.