End coming up

Why haven’t I been able to discuss my radiation treatment?  I don’t know.  Haven’t a clue about why I’m basically blocked about this.  I’m down to my last 6 treatments.  Two this week and four more next week and that’s it.  I’ll be all done.  Done, hopefully forever, with breast cancer treatments. 

I’ve hated this process.   I’ve done my research, faced each decision, gone through every moment required for the best possible outcome without a whole lot of angst.   But that doesn’t mean I haven’t hated this.   And maybe I’ve been hating so long, focusing so much on my battle, that I’m having a hard time looking beyond this “war”.

I’ve blitzkrieged this disease.  Chemo, which made me ill.  Surgery, which has (no way to get around it) disfigured me.  Radiation, which has burned me from the inside out.   It’s almost done now.  According to the medical community, I’m going to move from being a patient to being a survivor.  Yet I don’t really think that way.  I’m not yet a survivor.  More like a “waiter”.  Waiting for each month, each year that gets me farther and farther from my diagnosis.   Waiting to be sure it’s over. 

And waiting, still, to write about radiation. 

Love you all!

Okay, okay- I get it!  My lovely, wonderful, friends and family- you are so right.  I don’t need to worry about what may happen in the future.  So I will give it all to you to hold.  Actually, I think we should all to have a big huge bonfire of the mind- we can toss all our worries on it and watch the sparks dance upward, everything burning to ashes.  That’s how I pictured the chemo all this time, as a fire burning away the cancer, leaving a clean pink scar.  (Well, it’s hard not to think of it as a healing fire, given the hot flashes I went through.  My hands and feet are still burning and numb from the Taxol.)

I recieved two wonderful presents last week.  One, from my VF friend Tami, was a book called “Model Patient: My Life As an Incurable Wise-Ass” by Karen Duffy.  I laughed and cried as I read it- it really struck home.  My new goal is to be as sassy and upbeat as “Duff”.  Tami, I mailed you a thank you, but I also wanted to thank you here.

Second, from my wonderful TNT friend Barbara, I received my very own “end of chemo” marathon medal.  That also made me laugh and cry.  This was one race that I really didn’t plan to be in, but I’m so glad to have crossed that finish line.  Now on to the next goal, the next finish line.  Thanks, Barbara for reminding me that there is always another race to train for, another goal to aim for.

And I think I owe a very overdue public thank you to Andrea and her knitting buddies for my chemo caps!  I know I wrote you a thank you, Andrea, but I never said anything here, because I kept planning on photos- alas, they never got done.  My goal for this next week is to get those photos, because some of those caps are a riot!   I think I also want a photo of me, my bald head, and my chemo medal!

The accumulation of 8 courses of chemo continues to affect me, even after the end.  I still have the neuropathy, the chemo anemia- and now, after all this time, I’ve started to lose my eyelashes and some of my eyebrows.  But I’m thinking a little clearer, so I guess some brain cells survived.

I want to assure Husband (not really sure who that is, just know that it is not my hubby) that I did in fact already have a full body PET scan.  It only showed the cancer in the lymph nodes and no where else.  According to my doctors, the PET does not always show all the tumors, though it does show most of them.  There is a possibility that my primary tumor is microscopic in the breast and has just multiplied faster in the lymph nodes.

My surgery is scheduled for Thursday, March 8th.  It will be the double mastectomy and removal of the ovaries.   I’ve chosen no reconstruction at this time.  Still getting all the details about how long I’ll be in the hospital, what my estimated recovery time will be, so I’ll let you know more later.

Sass on, everyone!

Pupating away…

Well, Taxol snuck up behind me and tripped me again.  Here I was working, exercising, finally eating right, and BANG!  Down I go with another fever.  Not serious, but enough to prevent me from doing anything extra.  So I’ve gone to work at Trader Joe’s, typed some reports for my husband, and then basically spent the rest of the time sleeping or resting.   I have a cocoon corner on my sofa and I’ve been pupating there, just waiting for the time when I emerge from all of this.

So that’s it for last week- started out great, ended up lousy, but nothing really happened.  My hands and feet are still numb, I’ve made no decision regarding reconstruction.  I’m just closing my eyes and dreaming of the end of chemo and it’s side effects.  Two days until the last treatment, but how more weeks until this poison is out of my system??   Still that end is within grasp- it’s in my hand.   Even if I can’t feel it.   I’m content with that.

It’s off to work I go…

Yes, it’s official- I’ve been released for full duties at Trader Joe’s by my shoulder surgeon.   er, that’s just great.   Well, frankly, I probably can work about 3-4 days, and my captain is willing to give me 5 am to 10 am, which means I’d only be exposed to the public for one hour before going home.   So if they keep me in the back room and off the register, that should work- as long as I don’t get an infection.  I really think that 3/4’s of the days I could do my job- it’s just hard to say what’s going to happen when I get  a get a down day.

And now that I have finally been released,  the Human Resources at TJ’s has decided that under the Americans with Disabilities act, I qualify for “reasonable accommodation” and they will give me additional unpaid leave (without taking me off the payroll) when I need to have my surgery!  I just have to get statements from my doctors as to how long they feel I will be off.  (Now to decide on the surgery! One, both, reconstruction, no reconstruction!)   Well, Hooray!  Couldn’t you have told me before this?  HR insisted that they would not discuss it until I was actually back to work.   I am so, so grateful that they made this decision, but not so grateful for the additional stress they put me through by refusing to talk about it before hand.

Alas, my bloodwork was abysmally low again.  .9 this time on the WBC and 9 something on the Hemoglobin.  Usual lecture- stay away from sick people, raw food, etc..   But, yesterday was the Lions Xmas Party that my husband was helping at, so I decided to put on my mask and gloves and go anyway.   Frankly, I was thinking in terms of adults, and forgot about the kids who were coming to see Santa.   Coughing and hacking kids… er,  lovely cute kids with visions of sugarplums in their heads and green snot in their sinuses.    I only removed my mask to eat- and I ate alone at the bar with my husband rather then sit at a table, then I hightailed out of there.

Warning- there’s TOO MUCH INFORMATION TO COME.  I don’t think I got anything from any of the people at the Lions Party- but I ended up today with a fever of 101, a racing heartbeat that comes and goes, plus (here is the TMI)- swollen soft tissues in my mouth, vagina and rectum.   I was not even close to being constipated, I eat too much fiber for that, but I was in terrible pain if I even tried to go to the bathroom.   So I’m off to pick up antibiotics- plus something for what the doctor thinks is a general yeast infection, which would explain all the swollen soft tissues.   I’ll have to go in tomorrow to be checked out further.

Now, as bad as I felt today, could I have worked?  Yes, because I actually felt quite well  until about noon.  I’ve noticed that I feel pretty good early in the morning, and my temps are low then- so I’m crossing my fingers that this all works out.   I  miss working, I miss the people.  I think it may be good for my morale to go back.

Call LZ5 for the Psychic Hotline

The Psychic Hotline has nothing on me!

Tuesday I had to have my weekly blood work.  I just knew it would be low, as lousy as I felt, it had to be.  Yep, my immune system is basically zero again.   Back to gloves and a mask when I’m around people.  But that’s not why the nurses were asking me for Lotto number picks!  Normally when I go for blood work, I just have it drawn from a vein in my arm.  Just easier and less work, etc.  This time I asked them if they would try to draw it from my medi-port.  You see, I’d been having DREAMS about my port- that it wouldn’t work.  I figured let them take the blood through my port and put my dream mind at rest.  You guessed it- they couldn’t get a blood draw through my port.  It would flush- which I think means they can still use it for my chemo drips, etc- but they couldn’t get it to draw back blood, not even after giving me a blood thinner.  What was supposed to be a 10 minute blood work turned into an hour and a half long frustration exercise for me and the nurses.  (You have to wait for blood thinners to work, etc).  They were laughing with me about my dreams at the beginning, but very bemused at the end.  No matter how  determined they were to make it work, it just wasn’t happening.  I ended up having my blood draw through my elbow vein as usual, got the bad news about my numbers and came home.  Perchance to dream again??   They’ll try again next week, hoping that the blood thinner they put through the port will get rid of any “skin” that may have formed.

It’s been so warm here that the dandelions are in bloom!  How weird and wonderful to spot that speck of yellow among the decaying leaves.

Wiped Out

No, I never did the vacuuming on Saturday. Instead, Scott came home and whisked me off to the movies and dinner. We saw Stranger then Fiction- which we both really enjoyed. A nice quiet little film, with gentle humor and an actual story to follow. Afterwards we went out to Go Roma (a fast food Italian place- imagine that) where I ordered Chicken Parmesan- and the chicken actually tasted great! The pasta and salad were like metal filings, but I loved the meat. So it appears that meat protein tastes better to me then anything else. It was nice to enjoy an evening out.

I did vacuum on Sunday and that wiped me out. Monday was typing some reports, and that wiped me out. Today I had my bloodwork done and my white blood cell count is down to .6- that’s point 6! It’s supposed to be between 4 and 10. I basically have no immune system at this point and am open to any infection. The nurse said to avoid everyone and wash my hands as much as possible. I’m back on antibiotic as well. Came home to make some beef stew in the crock pot- and, no surprise- I’m wiped out.

Eating and energy

Yesterday all I wanted to do was eat.  It was the last day on steroids for this chemo round and I was starved.  Yet everything tasted nasty- iron metallic or dirt.  It didn’t matter, hunger drove me.  I ate and ate.  A bagel with almond butter, macaroni and cheese, a Subway Chicken Sweet Onion Teriyaki sandwich, samples of baklava with a friend, Mongolian Chicken from the local Chinese.  Perfectly good food, but it all tasted abominable- I ate anyway with vigor and gusto.  I could have had that dirt eating disease- Pica.  I had no pleasure from the taste, but it filled the pit that was my stomach.

I didn’t do too much otherwise.  Considering all the calories I was shoveling in, I had little energy and just wanted to sleep.  This is the dip down after chemo, from what I understand my white blood counts and red blood counts are all marching steadily down and will be at their lowest by Monday.  Then I should get a swing back up the next week, steadily building up until I’m ready for the next round.

I did manage to go visit my friend Jodi.  Poor Jodi, on Thursday she had similar shoulder surgery to what I had last June.  I took over this ice machine/ice pack contraption that I used after my surgery.  Apparently her insurance didn’t cover this- I was happy to let her get some use out of mine.  And I had to commiserate with her- I know just how hard recovery is going to be.

On the other hand, it’s weird to think that 5 months ago I was dealing with the shoulder surgery and now I’m going through cancer treatments.  That shoulder surgery was the most pain I have ever had, the recovery was beastly.  Now my shoulder is doing pretty well and it’s the least of my problems.  Life does trudge on, doesn’t it?

Last night I didn’t sleep well.  I was having one chemo hot flash after another- like every 10 to 15 minutes.  I would doze for just a few moments and wake up sweating- the heat percolating off my body.  My insides of my mouth were completely and utterly dried up, even though I was swigging water every time I was awake.  I went through 32 oz of water during the night, and would have sworn that I was dying of thirst the entire time.

Today I’m determined to vacuum the downstairs.  That’s my only goal- of course it’s already the afternoon and I haven’t even gotten the vacuum out.  We’ll see how I do.

Tooth and nail, er…hair!

It’s always something. *Sigh* I’m paying the price for not going to the dentist this year. Okay, I don’t like the dentist, especially since the Lyme disease has made me very sensitive to the drilling and scraping. It’s like nails across the blackboard to me, painful to my nerve endings. Well, today I cracked out a portion of a “temporary” filling- it’s only been there for over a year, but I guess I thought if I ignored it then it would be more permanent. It has to get taken care of- I’m leaving myself open to infection otherwise, and I’m already fighting a chest infection. I’m off to the dentist this afternoon for at least an xray, then he will talk to the oncologist to see what can be done.

Even though the hair is still hanging tough, I’m having it shaved off tomorrow. According to everyone it should be gone or almost gone by Monday. If I don’t do it tomorrow, I won’t be able to do anything until after the next chemo session- which would mean facing clumps coming out and possible pain when it does. Since my scalp is starting to feel a little sore, I’m being pro-active. Get it done. My own version of the Nike motto. My friend and neighbor, Sharon, is going to come with me. We’ll go out to breakfast first, then I’ll settle in my stylist’s chair and watch the clippers go.

This and That. Head to Toe

I thought I would blog about some of the other stuff going on.

First off, I just couldn’t dodge the infection bullet. I ended up late Sunday night with a fever of 100.6 and a deep chest cough. As per instructions (“always call with a fever over 100.5), I contacted the doctor who immediately put me on Levaquin and Hydrocodone cough syrup. That stuff worked fast- my fever went down immediately and I realized that my mediport may have been a little infected as well- most of the swelling around it went flat and most of the pain is gone around it. I thought it was just from the surgery. I had to go into the doctor’s office yesterday for bloodwork and it showed very low white blood counts.

I tried to walk this morning, and my heels hurt so bad, almost like heel spurs, that I turned around and came back. I’m missing working out, I’m supposed to work out, people who work out survive better. But I’m tired, still coughy and my heels hurt, so I’m done for the day.

My hair is still here. It hasn’t budged at all- not even to start to thin. I’m supposed to lose it anytime after the first week. The nurses at the oncology office asked if I was losing much- I told them I hadn’t seen more then 2 hairs in my brush.

I bought myself a wig. As a matter of fact, I bought myself a wig over 2 weeks ago. It’s short, sassy, spiky. Red, blonde and brown highlights all over. I love it, my family loves it. When I went on line to find what other colors it came in, I found it actually came from the Ebonyline of New Born Free. Yes, I turns out that I am secretly a sexy black woman!! Mattie wig. I also found out that the wig shop charged me FIVE times what this wig costs on line! I’m not happy about that, it was a real rip off, but I can at least get most of it back from my insurance company. I won’t go back to that shop.

I’ve managed to keep up with my typing for Scott’s reports, and I’m still going to physical therapy for my shoulder, but it’s tough. And if I’m released back to work at Trader Joe’s I don’t know what I’m going to do about working two jobs and handling chemo. My 12 weeks of family leave are gone- they forced me to take it during work man’s comp. Apparently the federal law allows employers to do that. Since it’s my TJ job that provides the insurance, I have to be able to work! Ugh, ugh, ugh.

Halloween photos

Well it’s Halloween, so what better time then to post some scary photos?

This was my first chemo treatment last week. The photos give you a good idea of what a cancer treatment room is like.

This is the IV push of the doxorubicin. It’s bright red, and makes you pee orange red for days.

Set up with the cyclophosphamide to the IV stand and pump. This was the second part of the chemo.

Actually, this should be the first photo in the series. It shows the nurse taking blood from my new mediport.

Sorry, I haven’t figured out exactly how to work things on this blog yet- it looks fine when I do the draft and then changes when I publish it. Trying to edit again, which hopefully will make things look right.