Archive for September, 2009

New development: blood clots in right arm, probably from the port. Starts just below clavicle, extends into armpit and down inner arm to elbow.  Arm and hand mostly purple.  Limited use of hand, including typing! ARGH!  So, now also taking a blood thinner called Lovenox, given by shot into the belly daily for next 6 months – you guessed it! – by me. Double ARGH! (Was a big baby about this when told. Two nurses assisted me the first time. When I said how I dread this, one nurse admitted she couldn’t give herself a shot either!)

Once-a-day, whether you want to or not

Once-a-day, whether you want to or not

In other news: made it thru yesterday’s last chemo infusion with no incident.  Well, except the port is no longer safe to use, so chemo injection was into left arm.  Lots of neuropathy this morning (pins & needles numbness in fingers and along forearm) – so even my “good” hand not functioning optimally for this exercise of typing.  Otherwise, all went well, with Shawn bringing an Indian grain dish called “Kitchari” for my picnic lunch, and homemade oatmeal cookies with pumpkin seeds from an Ayurvedic recipe.  Very nourishing and stayed down!

And another lovely woman whom I’d not met before, Annette (went thru breast cancer treatment about six months ago) came to introduce herself and brought homemade foods she said “saved her” during treatment: broth made from beef bone and vegetables, tapioca pudding, dates, and electrolytes for drinking water.  Was so moved by her generosity in preparing all this for me though she didn’t know me.  We had a really nice visit, and I brought home lots of healthy food for next few days, thanks to both Annette and Shawn.

I want to celebrate this milestone of finishing the chemo infusions, but somehow seems hard to do while staring down the tunnel of another week of radiation and Xeloda (not to mention daily self-administered shots for six months).  Still, I know getting past this particular hurdle is something to acknowledge and honor – so, yes, I GOT THRU IT!

Fingers too numb to type more.  Love to all who are continuing to keep me in their thoughts.  I’m very grateful.

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Saturday.  No treatment for two days – thank goodness.

I’ve been wanting to post a quick update for a few days, but it’s definitely getting harder and harder to do anything now.  I spend much of the time either lying half-conscious in bed or struggling through another episode in the bathroom.  I’ve managed to eat at more-or-less regular intervals (but only with the help of my new “anti-nausea” drug).  In the past couple of days it has become a challenge to be in an upright position for more than fifteen minutes or so.

Transferring Gases

Transferring Gases

After being so sick following last week’s chemo, Dr. Fekrazad and I discussed the option of reducing my dosage, both of the Oxaliplatin infusion and the Xeloda pills. While he was willing to reduce the dosage for the final two weeks, he also reminded me that we’re hoping for a “complete response” to treatment (i.e., no evidence of cancer following chemo and radiation), and a lower dosage raises the chance of having only a “partial response” to treatment (i.e., cancer cells still exist even after chemo and radiation).  So, while my body was shouting, “lower dosage! lower dosage!” – my brain went ahead and told Dr. Fekrazad I’d stick with the original dose.

Somehow, I made it through Wednesday’s chemo infusion with no incidents, no vomiting, etc.  My dear friend Shawn brought a picnic lunch to the Cancer Center for me once again. It’s quite a treat to have her show up with her basket of homemade food, cloth napkins, ceramic dishes, and real silverware! This time she had fixed miso soup, a bowl of rice, and some berries for dessert – all things I could manage to eat that day.  Although Wednesday went pretty well for me, by Thursday I could feel myself beginning to slide downhill.  Today, I’m still really shaky and weak, but hopefully by tomorrow I’ll have recovered a bit – so I can have the strength to start again on Monday.

But I am in the home stretch now.  Next week is my last full week of treatment (I’ll finish up in three days the following week).  My final chemo infusion is on Wednesday the 23rd.  My final radiation treatment is on Wednesday the 30th.

I may not have it in me to write much between now and the end of the month.  In the meantime, my gratitude to everyone who is keeping me in their thoughts and prayers.  Thanks for helping me hang on until I can get to the other side of this – which will be soon, I hope.

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Mary Jane

Okay.  From the very beginning of treatment several people have asked me if I knew Mary Jane.  I did meet her back in High School, but I didn’t really like her.  I felt like she hung out with a dopey crowd.  I saw her again a couple of times in college, but we just never became close.

Now, since I’ve been sick, it seems like everybody wants to know if I’ve seen Mary Jane recently.  Several “friends of friends” have offered to find a way to get us in touch with each other. Even one of the radiation techs offhandedly wondered if I had a way to locate her.  But the real kicker was when one of my doctors asked me if I knew her!

So, this afternoon she stopped by for a tiny little visit. I was so surprised how much better I felt almost the minute I embraced her. And I haven’t been happier in weeks than I was during the time she was around.  She even made me feel well enough to eat! (Which is a beautiful thing since I’ve lost 5 more pounds since last Wednesday.)

I got such comfort from her visit that I’ve invited her to come back again soon. I told her I’d probably be hanging around the house a lot over these last two weeks of chemo and radiation, and her visits would sure do me good.

I don’t think there’s much chance that we’ll hang out together for all that long.  But, for now, I’m thinking she’s another angel among the many who have helped me on this journey.

So, thank you to everyone who nudged me to hook up with Mary Jane. And especially to those who made her visit possible. Gracias.

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Rough Patch

A short update is probably all I can manage today.  Since Wednesday I just have not had the strength to do more than a few minutes at the computer each day.

This week’s chemo treatment really took a toll on me.  I wasn’t home from the Cancer Center very long before I began vomiting.  The “pre-meds” I’m given just before the chemo include Zofran (an anti-nausea drug), but I’m afraid it didn’t do much good this time.  I also have Zofran pills at home, so as soon as I started getting sick I took one…but it didn’t stay down long enough to help either.

When I wasn’t preoccupied with throwing up,  I had some discomfort to manage that’s building up from the radiation treatments.  The sensation is something like an electrical impulse that comes and goes intermittently.  Unfortunately, the feeling is located primarily in my rectum, so it’s pretty uncomfortable when it hits.  If I can stay relaxed and breathe calmly, I can often manage the discomfort pretty well.  But, on Wednesday night I was barely able to recover from vomiting nearly hourly, so managing any other pain with breathing exercises wasn’t really an option!  It was a long night, to say the least.

The next morning I somehow dragged myself out the door to another session with Diana, whose energy work has definitely helped me handle the building side effects of all the treatment.  Once again, the beautiful space she creates and her generous healing work allowed me to find some calm in the storm, at least for a while.  But, by the afternoon, when it was time for my radiation appointment, I was pretty depleted again.

The radiation techs are very kind to me each time I come in.  They always ask how I’m doing, if I need anything, do I need to see the doctor.  This time, when they learned I’d been sick all night, they had Dr. Han give me a prescription for yet another form of Zofran – one that dissolves on the tongue immediately so you can’t vomit it up.  I accepted gratefully and hobbled back home.

Tasya showed up with a bunch of food to stock the refrigerator:  roast chicken, cucumber salad, pesto pasta, caprese salad, and more.  But I couldn’t begin to think about food passing my lips – not even her farm fresh, organic, lovingly prepared, homemade food.  The only thing I’d been able to handle was a few sips of sparkling apple cider (non-alcoholic, of course!) mixed with some sparkling water.  Something about all the bubbles helped settle my stomach and for some reason apple cider actually sounded good to me.  By Friday, Tim coaxed me into eating a few bites.  He made up a plate with just a tiny sample from each one of Tasya’s dishes.  I took one bite from each and felt like I’d just eaten a Thanksgiving dinner!

Most of my energy is taken up moving from the bed to the bathroom, and then to the couch and sometimes to the chair for a change of pace.  I’m a pretty pathetic sight as I move about, hunched over, shuffling along like a very old lady.  (Occasionally I notice Tim wince or even tear up as he watches me.)  But mostly, I just try to stay still.  When I can do that for a while, much of the discomfort seems to ease.  When I let myself get agitated or begin feeling sorry for myself, that’s when the unpleasant sensations creep back in.  Sounds easy to cope with on paper, but it’s a constant struggle to stay calm and centered.

I’m thankful the weekend is here.  Two days to recover a little bit before starting another week.  If I can make it through without having to stop for some reason (low blood count, infection, any number of other possible problems), then my last day of treatment will be on September 30.  Thank you for all your prayers to help me through this.  I could feel them surround me during the most difficult moments.

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Half-way Day

Today will mark the half-way point through treatment.  It’ll be the 15th of 30 radiation treatments, and my 4th long chemo day. 

Because of the holiday weekend, I had three days off from treatment just when I really needed it. Last week the unpleasant side effects were starting to build, so it helped to get that extra day off to “bounce back.”  As an added bonus, this week ends up being a short week of only four days of treatment, so I have hopes that by Friday I won’t feel quite as puny as I did after last week’s five-day dose.

A routine question I’m asked at the Cancer Center is whether I’m having any pain.  Until recently the answer has been no.  Yesterday, when I went in for radiation, I said heard myself say “yes” for the first time.  I knew the next question was going to be, “On a scale of 1 to 10, how bad?”  I told Carl I’d give it a “2” – which seems silly to even mention, but it gave him something new to write on my chart.  That, and I’d lost only 2 pounds this week. Otherwise, my vitals have been almost exactly the same every time they check.

Sock Swatch

Sock Swatch

As evidence of my progress, I started working on a knitting project during my long chemo days (to keep me occupied while I wait for bag after bag of meds to finish dripping).  As further evidence of how slow a knitter I am, I’m still working on the swatch and haven’t even made it to the real project yet (socks).  I’m likely to be finished with the entire treatment before I get the first inch of the first sock done…

I’m doing my best to just take things one day at a time now, and to not worry too much about what the next couple of weeks will bring.  But occasionally I let myself indulge in looking down the road a ways and – well – it frightens me.  If I’m feeling sickly now, I can only imagine what weeks five and six will bring.  But, as Dr. Fekrazad and my other health care folks tell me, “Everyone is different. You just never know.”  So, let’s all keep thinking positive, healing thoughts and perhaps I’ll be blessed to sail through the second half.  And get my socks knitted.

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Every day there are more things to be grateful for, and more people who I want to give an extra special thank you to.  Today, though, I really want to express my love and gratitude to my beautiful Aunt Carol.

Dear Carol:

            I don’t know how you do it.  You’ve got an amazing, uncanny knack for knowing exactly when I could use a few well chosen words of encouragement, or an email hug, or a great book I wouldn’t have thought to pick up.  Somehow you manage to consistently “read between the lines” to know just what it is I need…I sure do love you for that and – of course – so much more! 

            When you sent A Pearl in the Storm a while ago, I gotta admit my initial response was, “I don’t think I can read an entire book about some nutty woman rowing across the Atlantic…” But, in part because of your gentle nudges with each Pearl reference in your messages, I finally decided to open the cover and take a look. Now that I’ve almost finished it in two sittings (well, if you don’t count the dozens of bathroom breaks…), I can give you the heartfelt thank you the gift deserves.  Her story is so inspiring, and truly a testament to how much strength we each have within us if only we can get out of our own way long enough to discover it.  I’m working on that part a little bit more each day.

A Pearl In The Storm

A Pearl In The Storm

I got to the chapter where she describes being violently tossed about in her tiny cabin during the hurricane. Just then I was beginning to have a particularly tough time with my own ailments.  But I thought, jeez, if she could survive being beaten up in a rowboat hour-after-hour, I could surely manage another round of what feels like “passing needles.” Her ability to find humor in her dire situation actually helped bring a smile to my face: I envisioned myself being found lying half-naked passed out on the bathroom floor but had to laugh when I realized (a bit like Tori) what really concerned me was that the floor was dirty… 

            And then, in yesterday’s mail, the first issue of Unity Magazine arrived from you. I was so pleased to see the author of Eat, Pray, Love smiling on the cover (another woman whose difficult journey helped her find her heart!).  The article about her made me want to pull out the book again for another good read. 

            But, even more than providing the ideal reading material when I most need it, I so appreciate each of your wonderful messages (emails, blog comments, Facebook posts…).  Most of the time you make me grin, but then just when I’m willfully holding back tears you come up with something that causes them to pour out. 

            You’ve been there for me through every damn hurdle since I was born. I wouldn’t be who I am without you. “Thank you” does not seem adequate.  So, how about “thank you” and I LOVE YOU! 


P.S. – You only got off without me posting a photo of you because I didn’t have the patience to get the scanner to work…next time though…

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The First Complications

I’ve been wanting to post an update for a couple of days now, but I simply have not had the energy to sit at the computer long enough to get it done!  I have five or six half-drafted entries that each got started at some point along this journey, but then when the ebb in energy came I lost the momentum to finish and get them posted. (Uh, this could even be another one!)

I’ve been feeling progressively worse this week.  Tuesday night, I noticed a my throat was getting scratchy and sore.  I immediately took a zinc tablet.  I started sneezing and was rapidly getting congested.  I drank a homemade brew of garlic, lemon juice, molasses and water.  I was beginning to feel achy and feverish and my throat was getting worse.  I gargled with salt water.  I knew my immune system was likely getting more depleted with each cancer treatment, but I was determined not to let something like a cold or flu creep in and take over, so I pulled out all my home remedies and put a bunch of energy into kicking it.  I slept fitfully that night, but awoke feeling like the bug was gone, thank goodness.

I had to be at the Cancer Center at 8:30 that morning for my third long chemo treatment.  Just as I was ready to head out the door, a bout of diarrhea came on.  I called them from my cell phone in the bathroom to say I would be running just a little late…

They start each Wednesday by drawing blood (from the port) and sending it to the lab.  The results are back within half-an-hour and a chemo nurse calls Dr. Fekrazad with the info.  Once they know the blood work looks good, they begin the first of six bags of drip that make up the overall chemo treatment.  Yesterday, everybody was thrilled with my blood work: good hemoglobin, WBC (white blood count) perfect, platelets good…

In the midst of my third big chemo treatment (half way through a total of six!), I also had my 11th radiation treatment (just a smidge past 1/3 of the way through a total of 30).  All that and they managed to get me out of there by 3:00 PM this time.

By 5:00 I was shivering on the couch with a fever. One of their big warnings has repeatedly been that I must call if I have a fever that exceeds 100.5 (not 105 – by which time I’d likely be gone).  Apparently, it’s a sign of infection and things can get out of control fast.  I had purchased a digital thermometer at Walgreens a couple weeks ago, but hadn’t taken it out of the package yet.  I was so out-of-it on the couch having chills I couldn’t muster the energy to get to the bathroom where the thermometer was.  Thankfully, Tim came in to check on me and immediately went to get the thermometer.  It registered 100.4.

He helped me to bed.  I took a Tylenol and drank some water.  By about 8:00, I knew I would need to eat something so I could take my evening dose of Xeloda.  I set an alarm in case I fell asleep.  When the alarm went off, I took my temperature:  101.7.  Shit.

I knew I had to call.  I also knew that chances were good I’d end up talking to some doctor in Albuquerque who didn’t know me, who would simply say I should go to the Emergency Room.  But I dutifully called anyway.  The first answering service said they’d have a nurse call me back.  About 10 minutes later, I got that call.  She asked a ton of questions (insurance first, health second), and then said she’d try the doctor.  A little later, I was connected to the doctor-on-call’s answering service, who told me they’d have someone call me back.  A while later I indeed got a call from a doctor I’d never seen or heard of who told me I should go to the Emergency Room.

Meanwhile, though, with all the calls and waiting, my temperature was coming down.  It was still too high for them, but I made my case that I had just had a long day of chemo, I was exhausted and needed rest, and hanging out in the Emergency Room where I’d be exposed to tons of germs and other junk wasn’t going to do me any good.  I told the doctor if the fever got worse I’d go.  But as long as it was slowly coming down, I was staying put in bed.  She didn’t like it, but agreed that it was up to me.  She also admitted she was obligated to give me the most conservative advice since she was doing this by phone and didn’t know me.

I wasn’t playing fast and loose with my health.  I just knew it wasn’t an infection.  It was most likely some residual from the bug I thought I’d kicked the night before.  After a full day of chemo, my immune system was depleted and the bug was taking advantage of it.  I also reasoned that if I’d had an infection the fever wouldn’t be coming down.

I survived the night.  My temperature was normal when I got up. I called the Cancer Center to give them an update on what had happened.  They said I should give them a urine sample when I came in later for my radiation treatment.  I took my morning dose of Xeloda, and soon began to feel nauseous.

One of the bags of drip on Wednesdays is Zofran, an anti-nausea drug.  I also have a bottle of Zofran pills at home in case I need them, but so far I hadn’t.  I decided it was time to open that bottle.  To add insult to injury, I’d been in the bathroom much of the morning with diarrhea.  I was also feeling shaky and weak.  I’ve been driving myself over to the radiation treatments each day with no difficulty, but today seemed like a good day to ask for help.  Thankfully, Tim was able to take me over there with only about 15 minutes notice.

Right after the radiation treatment (#12!), the oncology P.A. told me the urine sample was fine.  She said maybe I was just fending off a bug.  Hmmmm…

Once I got home, I pretty much just collapsed again.  It’s so distressing to feel so weak and ill that you can’t really do anything.  Somewhere along the line I had this imaginary scenario in which I would spend time sitting in my chair knitting or reading, or maybe working at the computer, or watching a movie.  But when I’m feeling really crummy, none of those things are possible.  The best I can do is find a place to lie down.  And try not to cry too much.

But, then, the wave eventually begins its climb back up again, and although I don’t feel top notch, I’m able to move about and do a few things once more. Like completing a post for the blog.

P.S. –  A big Thank You goes to Mary Anne for getting groceries and other goodies for me today, too.

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