Archive for April, 2010

26
Apr
10

Chemo #4 – The Great Scrabble Hustle

Laura came to my chemo session today, which also involved meeting with the doctor. Fair warning: I told her this might give her tmi about my bodily functions, and told her I could come get her when it was time for chemo; but she decided to tough it out. I think she was a little flustered by the end.

And fair warning to readers: euphemisms ahead. If euphemisms are still too much for you, I recommend you skip this post.

This week I met with the gynecological oncologist who removed my ovaries (this is not a euphemism), because about 1 or 1-1/2 weeks into chemo I developed what seemed like an abrasion that had a lump associated with it down in my lady parts (euphemism). I thought at first it might be an ingrown hair causing an abscess (non-euphemism), but not being a contortionist was unable to get a good look, and it eventually cleared up to just being a small lump under the skin. It actually took another week or so for me to have a paranoid attack about whether someone (well, OK, women specifically), can develop cancer in their flower petals (euphemism).

So in my meeting with Dr. Sweetheart, she reassured me that although it was possible to have cancer there, it much more likely is a cyst or a healing abrasion, ingrown hair, or other injury-type lump. If it hasn’t completely cleared up in the next month or two, we’ll do a biopsy, but I’m no longer totally paranoid. As to the cause of the lump, I would have to relate that with many more euphemisms than even I care to type; so let it simply be said that it is still a mystery. However, the conversation regarding cause led to many more euphemistic-laden subjects, and neither Doctor Sweetheart nor I flinched, but I sensed some going on in my peripheral vision.

Suffice it to say that Brian and I are scheduling a date night for my next chemo break-week (euphemism).

Last night, Laura had suggested that I download Scrabble to my iPhone so we could play during chemo. We chose some recliners over in the corner, and passed the phone back and forth. Now, I’m a pretty good word person, and I know some pretty good $20 dollar words. I even know some pretty good $50 words; but seriously, what kind of word can you make with the letters NEELNER? or UUSKINI? and why, when Laura was getting all the “bad” letters (Z, X, Q, etc) was she not only able to make words, but get all the Triple Letter and Triple Word scores? I, sirs, have been hustled.

Next time, I’ll have to play the cancer card.

25
Apr
10

And We’ll Have Fun, Fun, Fun . . .

. . . ’til the chemo is back in full sway-ay.

I had a great birthday – it was very quiet, and we just went up to the local Indian restaurant for dinner, then our neighbors came by for a little while. A lot of people called and sent cards, and I received some beautiful flowers, Brian gave me a lovely heart-shaped puzzle box with a silver heart-shaped pendant inside, and I got a purple beehive wig. It has an awesome rhinestone bling right in the center, too.

My girlfriend Laura, who just got married, is in town – it was the perfect time for her to be here, since this was my week off of chemo, and I felt comparatively good. Mostly just fatigued, although I still have minor versions of most of the other symptoms. We have eaten out several times, and the food was wonderful, even though my taste buds are still a little off. By limiting what we did to an hour or two at a time, I have been able to do several things (with intervening naps of a couple hours each) that will be beyond my stamina this coming week with the return to chemo.

Thursday we picked her up from the airport, made a brief stop by my favorite bead store, Beads at Dusti Creek, then had an early dinner at La Petit Provence next door. Yum! Picked up some pastries for various breakfasts (double yum!!), then went home and crashed early.

Friday, Laura and I had a spa day – we had massages, facials, and pedicures; so relaxing, and we really were ready to melt after all that pampering. Saturday all three of us went to see How to Train Your Dragon. And today, we went to the Saturday Market, where I bought a great hat.

It’s all about choosing the right activities – the spa day and the movie didn’t require lots of physical energy, although the movie did require some mental focus (OK, not like it’s a deep movie, but it was fun, and I did have to be able to keep up with the plot. . .). Saturday Market required more energy, but there are places to sit down and rest, and we didn’t spend much more than an hour, and saw pretty much the whole thing.

It’s also all about fueling the body – we have done a lot of eating. Besides the French bakery, we have also eaten at quite a variety of places. Lunch at the Mad Greek Deli, dinner at Sweet Ambrosia (owned by our friend Mary, who is a fabulous chef!), quiche from Sweet Ambrosia for brunch, dinner at Marrakesh, fair food at the Saturday Market, drinks and fish tacos at Jake’s Famous Crawfish (Laura’s nephew lives in Portland and works there). This evening while I was napping, Brian cooked a delicious steak dinner.

And after dinner, we watched Burn After Reading. None of us knew what to expect (although it is a Coen Brothers film, so we did figure it would be out there), and were pretty blown away. We all agreed that we felt the most empathy for Ted, although we never did figure out what he represented.

Anyway, I’ve been having a lot of fun since Wednesday, in between naps. And now it’s time to go to bed, since to add insult to injury, not only do I have chemo tomorrow, I have to be there before 9:00 a.m. Happy, happy, joy, joy.

20
Apr
10

Sunday, Lovely Sunday

My Sunday started on Friday, when Brian and I tried something I wasn’t sure I was really up for – meeting friends for dinner. In preparation, I took a nap Friday afternoon, and felt about as rested and ready as I ever feel these days. We met Shawn and Hope downtown at Mother’s, and we were there for a little over two hours. We’d warned them that I might be quiet unto napping, if the chemo was picking on me that day, but the nap seems to have headed that off, and I was able to be a full participant in the conversation.

Hope brought a photo album of her dog Scampers, who is just adorable – you can tell that he scampers pretty much everywhere. She also told some very amusing stories about how her cat (sorry, brain fade on the name) entices the dog to play with her. We had a very enjoyable dinner, and the promise that we will get together again soon when it is a good time in my chemo cycle. I’m looking forward to that!

I wasn’t up for much once we got home though. That’s the way it usually works – I can push myself to be on for a couple hours, but then it’s back into the pumpkin. Brian and I played Yahtzee (probably the simplest game we have, and all that I was up for), then went to bed by 9:30 – 10:00.

Saturday our friend Cathy and her dorky Augie came down from Longview. We talked knitting, and she helped me figure out an alternate way to accomplish something that my peripheral-neuropathied hands were having trouble with doing by the book. I had to stop part way through and go take an emergency nap, although it was mostly an emergency close-one’s-eyes-and-rest – at any rate after about an hour I felt as if I’d recouped some energy. We all went to the Mad Greek Deli for a late lunch (mmm, lamb gyros!), and got some various baklava to go.

That evening, we had crockpot potroast with garlic bread, then watched Time Bandits. Just as my favorite part of the movie came on, I got smacked by yet another “you must lie down now” brick, just out of nowhere. I stumbled up the stairs, and slept through booms and roars, sinkings and burnings, as well as ogres, Supreme Beings, and Pure Evil. Good thing it wasn’t incumbent upon me to rescue the world from Pure Evil; or if it was, well, sorry.

Sunday morning I got up relatively early (8:00 *is* early, for me at least), made a pot of coffee, and set out the baklava. We all relaxed, and Cathy and I knitted some more; round about noon, I suggested that we go lie out in the backyard in the sun. As it turned out, we only lay in the sun for a half-hour or so, then moved into the shade, as it was quite hot in the sun. I read several chapters of “The Light Fantastic” by Terry Pratchett to Brian and Cathy (and Augie and Robin, although I doubt they were really listening). Eventually we came in, had lunch, played a game of Uno (Cathy creamed us); and then Cathy had to head on back home.

What a lovely, relaxing weekend, and especially Sunday! It is days like this, with good friends and quiet enjoyment that make the miserable days of treatment worthwhile.

17
Apr
10

Working it out

If someone asked me about myself, I would say that I’m a reader, a writer, a crafter; a gamer, a giver, a geek; a happily married wife, a dog-mom, a cat-mom; shy but outgoing, cynical but optimistic, intellectual but silly; and probably much more.

What people usually want to know is “What do you do?”, which would garner much the same response.

What people usually *mean* is: “What sort of job do you hold?”.

I’ve never been one who defines myself by the specific job I hold – I have at various times been a receptionist in a dental office, a dog trainer, a purchasing agent, and most recently, a jack-of-all-trades. Or if you want to make it sound better, feel free to say “Renaissance Woman;” my latest job description for the company I’ve worked at for nearly 10 years includes event planning, purchasing, database creation, data collection and management, reading/writing/editing/proofing, shipping, inventory control, website content management (and defining design elements), and lots of other varied tasks.

It’s much better to say that I define myself by *how* I do my job – that I take pride in being organized, efficient, accurate, dedicated, and flexible. In many ways, these are the elements of how I live my life, and apply to all the other ways in which I do define myself.

Over the past three years, as I’ve gone through treatment for two bouts of cancer, I have seen some of these qualities suffer. And just when I felt as if my work mojo was returning, I get slammed with liver mets.

Seriously? The treatment is worse than the disease at this point, and it’s not the disease that has prevented me from working, but the treatment itself. After planning to work part-time for a couple months while I evaluated how difficult the treatment was going to be, it was a real blow to discover that after just two treatments I was completely unable to concentrate, retain details, coordinate multiple projects, or even keep track of accomplished versus outstanding tasks. Rather than put the company at risk because I was either too prideful or too desperate to feel needed, I determined that it was best if I take my FMLA time now, rather than later; that way they could get someone in to cover for me right away.

Emotionally, this was like a stab in the heart – not only because it meant that I had yet again lost hold of the qualities that are most important to me, both in my work life and my home life; but because, since I’m going to be in some sort of treatment for the rest of my life, it’s possible that I may never be fit to take my job back.

And even though I’ve been looking forward to retiring (we’ve been working towards the possibility of early retirement, maybe as early as 55 for me), all that free time was intended to be spent doing fun things. Currently, I have fewer good days than bad days on this treatment regimen (although the pain management may help with that), and I don’t have the focus or stamina to do so many of the things I love, such as knitting, beading, reading, training with the dog, etc.

Between the pain and the emotional devastation of feeling as if I’m no longer the me I choose to define myself as, I had a really bad week last week.

The last two days, with the pain under control, has seen a rebound of my more optimistic spirit, so even though relinquishing my job is still a bitter pill to swallow, I do hope that either this treatment will stabilize and I will be able to get back to work; or possibly if this treatment is not being effective, a different treatment will not be so incapacitating.

And I have to say that hearing from so many people who understand or are simply being there for me has done a lot to help that emotional rebound. Thank you all so much!

14
Apr
10

Iowa Stubborn? Nothing Compared to Greenlaw Stubborn.

The song says: And we’re so by God stubborn/we could stand touchin’ noses/for a week at a time/and never see eye to eye

Me? I’m just stupid-stubborn.

I can’t decide if it is a case that I felt as if I needed something I could control – we’re pumping all these poisons into my body to kill something that is out of control, but by God, I’m not going to take any drugs I don’t have to; or if it’s more that I felt I shouldn’t be having so much pain, so I refused to acknowledge (whine, yes; acknowledge, no) that I was nearly crippled by the pain I’ve been having.

Damn it all! I can take care of it by just ignoring it, trying to move through it, blogging about it; but take a pill, NO!

So instead I ended up at the ER for 5 hours last night because the pain in my chest was so bad that I knew Dr. Medici would have a fit if I didn’t go in. His concern is that chest pain could be a sign of another pulmonary embolism. I was guessing that it was just a new and interesting chemo side effect, but was willing to consider that maybe I’d gotten pneumonia again; as it turned out, it was nothing that could be identified, so the (very kind and sweet) ER doctor had a serious discussion with me about pain management.

Initially I refused to have them put a morphine drip into my IV, but they convinced me to have at least a little bit. After that kicked in, my brain (oddly enough, on morphine) cleared, because all of a sudden, I was down from a 6 – 7 on the pain scale to about a 2 – 3. I began to see the insanity inherent in my “no drugs” position – I don’t have to suffer, and if there’s some perverse sense of satisfaction at betraying my body which has betrayed me, then I really do need some sort of mental health counseling. And if it’s just being Greenlaw Stubborn (my maiden name – whatever else we are, stubborn is possibly the number one trait that my immediate family has in common), then it’s stupid-stubborn. I have my moments, but I’m not stupid. Not for long, anyway.

So I asked, “Please Ma’am, may I have some more?”

Today I called Dr. Medici and asked him for prescriptions for day/night pain pills. One of my reasons for not taking pain pills is that I don’t want to have my brain fogged; but I can see now that the pain had my brain fogged at least as much, if not more, than any pain pills will; plus the lack of sleep due to pain has just been fogging it more. I haven’t felt up to driving due to the pain and foggy-brain, so it’s not like I’ll be missing out on anything by not driving because I’m on pain pills.

My biggest worry is addiction. My mother was an alcoholic, and I have sworn that I would never allow myself to become addicted to anything (gaming excluded – not gambling, RPGs). I think this is truly the root of my concern about taking pain medication. Anything that is going to truly help is an opoid, thus addictive. I also have been trying to avoid taking insomnia medication for the same reason, but have been doing so when the pain was so bad that I just couldn’t sleep at all.

The good news there is that the more pain medication I take, the less insomnia medication I will have to take. At least if I do end up having to break an addiction, it’ll only be to one thing!

Also, I think it is pretty likely that a lot of my emotional distress has been caused by the pain – thinking that I’m less than one month into the rest of my life going through some form of treatment or another, and that much of it might be defined by the kind of pain I’ve been suffering has been extremely depressing. Yet another type of fog that should lift with the cessation of the pain.

So I’m waiting to hear back from the pharmacy on when my prescriptions will be ready. I have overcome my stubborn streak, at least this once. Hopefully any brainfog from the pain pills will be less than that garnered by the pain itself, and I can start to feel human again.

And seriously, I understand that I have reason to be depressed even without the pain; but that’s just not like me to be *so* depressed. I’m a strong woman, and typically have an optimistic outlook – it was a road I traveled for many years to get me to that state, but once I achieved it, it hasn’t been hard to find the positive mindset even under significant pressure. I look forward to getting back there.

13
Apr
10

Chemo #3 – Days of whine and noses

The whine is mostly about a long list of side effects from the chemo – going in-depth on each one would be a very long, boring, and sometimes disgusting post. So instead, I will focus on the ones that are giving me the worst fits.

Abraxane, being a variant of Taxol (or Taxotere) has pretty much the same side effects. I’d hoped that having the different base would mean that some of the side effects would either not happen, or be less intense. No such luck.

By far the worst side effect is the pain. Muscle, joint, and bone pain all are omnipresent, and they get worse with the Neupogen and Neulasta shots to boost WBC and neutrophil counts. Bless Margaret, a lady I have yet to speak to other than by e-mail, for turning me on to the wonders of Claritin. I took a Claritin Friday instead of my usual OTC generic Zyrtec allergy pill, and had a nearly pain-free day. Saturday morning I had a Neulasta shot (because there’s two weeks between chemo 3 & 4; Neupogen is for when you have chemo every week). I checked with the oncologist about using the Claritin instead of the Zyrtec, and he said he’d heard anecdotal evidence that it helped control the pain with Neupogen shots.

Apparently it doesn’t work so well with the Neulasta shots, as Sunday and Monday I have been back to the incredible relentless pain; with the Neulasta it tends to focus in my long bones (femur, humerus), although I do have some joint issues in shoulders, elbows, knees, and hips as well. I’ve been taking at least two hot baths a day, usually with Epsom salts – that will temporarily relieve the pain. Brian massaged my ankles/knees/thighs and lower back last night, and that helped while he was doing it, but as soon as he finished, it was totally back.

I’m trying to get in a little bit of exercise each day, on the theory that if I don’t use it I’ll lose it; and in hopes that it will help with the pain. Yesterday I walked down to the mailbox with the dog, and it wasn’t a sure thing that I was going to make it back to the house – it completely exhausted me. I would say that the movement did help briefly with the pain. I also try to move around the house and go up and down the stairs as much as I can; although I got to the bottom of the stairs yesterday afternoon, and couldn’t go up, but couldn’t make it back to my chair. I sort of collapsed with my knees on the second stair, my forearms on the fourth stair, and my forehead on the fifth stair. Brian found me like this, and retrieved whatever it was I’d wanted from upstairs. He offered to help me back to my chair, but I was being stubborn and said “No, I’ll get there eventually”. And I did. I think he checked on me a couple times, though.

The other real PITA thing is all the problems with my nose and sinuses. I get bloody noses (mostly just a tinge of color, but indicative of more and worse to come). I get extremely congested, and can’t clear my nose, especially if I’m laying down. I use a saline/baking soda flush a couple times a day to help get it cleared out, but woe is me if I don’t do it at all. It’s like having a bloody cold. Yuck.

I guess the good news is that the flushes have become easy to do since I have to do them so often, so my reasons for not doing them just for my allergies have all gone by the wayside.

Oh yeah, and the mouth sores – those I thought I could avoid by having ice chips before the abraxane – it certainly worked with the adriamycin and the taxol; they’ve gotten better, but still hurt and make it difficult to brush my teeth.

Did I mention the exhaustion? So tired I can’t keep my eyes open, but often not sleepy enough to sleep. I’m not sure if it’s this that’s ruining my concentration, or early onset chemobrain. I’ve tried knitting on a hat I’ve had in the works, and keep messing it up. What the chemobrain doesn’t impact, the peripheral neuropathy does (thanks to adding in the Avastin this past week).

So, there, I ended up whining about more than I’d intended. I’m hoping that the weather is going to warm up some this week so maybe I can go lay in the backyard in the sun for a bit. I’m bored, mostly because I don’t have the focus or stamina to read, knit, bead, play games, etc. I still hold that, if I were retired, and without having to endure treatment of any kind, that I wouldn’t be bored at all. And indeed, when I’m working on a piece of knitting, or reading, or stumbling down to the mailbox, I’m not bored. It’s all the time that I spend unable to do any of these things that I am bored. Sadly, even sleeping is only good for a couple hours at a time. And it’s really bad when I am awake at night. Then I can’t even pester Brian.

I have been watching some movies, recently. I finally watched “The Perfect Storm” and “The Shipping News”, and rewatched “A Midsummer Night’s Sex Comedy” by Woody Allen. Bless you, Netflix!

05
Apr
10

Everybody loves irony . . .

. . . except when it happens to them.

Last fall, everything was falling into place – Brian and I were having lots of fun and were more in love than ever (just so you know, this isn’t the irony part – we still are more in love than ever); work was going great and I was starting on some really fun projects; we took one of the best vacations we’ve ever had, and spent it with two of our most favorite people.

Sure, there were little blips, but isn’t life always like that? Even when nearly everything is perfect, there’s always something to remind you how grateful you are for your good life.

We had a wonderful Christmas, with my company extending our vacation policy to include all the days between Christmas and New Year, so I was rested and ready to come back to work. I put on the company Winter Party, and people seemed to have a good time (plus the caterer’s food was fabulous as usual ;-} ).

I started taking mandolin lessons in January, because I’d always wanted to, and it seemed like now was the right time. And it turns out that I’m somewhat of a natural, although probably partly because of my piano days, and existing familiarity with music.

Also in January, Brian moved the “Julie – Breast Cancer” medical file out of the active file cabinet into a box in the garage.

It is fairly reasonable to say that these were the happiest days of our lives so far.

On January 5, I finally ordered the book “The Happiest Days of Our Lives” by Wil Wheaton. I’d planned on ordering it before, except there’d been some long publishing delays; but word was that it was going to be shipping very soon. Yay! Order that puppy, because it is right in tune with where my life is, and I’m always up for more good stuff!

It arrived on March 26th, the day I had my first chemotherapy for my Stage IV breast cancer.

(In case anyone is unsure, that is the ironic part).

So my mission, and I *do* choose to accept it, is to convert this back from irony to truth. While one doesn’t have to be happy at having a terminal disease, one can live their life as if it doesn’t matter if they have a terminal disease. This doesn’t mean I’m going to do all the traveling I’ve always wanted to do, or write the Great American Novel, or win the Nobel Peace prize. It does mean that, with help from all the loving friends and family who are there for me, who call, write, e-mail, post comments, or even just pray or send positive thoughts and energy my way, these can still be the happiest days of my life; and hopefully Brian’s, also.




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