random. out of necessity

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

and i got the shot and everything

I have the flu. Or some kind of bug.

I took my temperature last night and realized that I was running a fever. When this happens, I am supposed to go to the hospital but it seemed counter-intuitive to take my worn down self to an emergency room full of sick people.

I called the cancer centre this morning and they told me to come on in to their stretcher bay area (I was still feverish, sore all over, queasy and light-headed). I got my blood counts checked and all is well on that front. They also gave me some intravenous fluids, which perked me up a bit (the trip into the cancer centre had knocked the stuffing out of me).

Then they sent me home with instructions to get lots of rest and stay hydrated.

It's not even insult to injury, it's injury to injury. At least I know that my body has the white blood cells it needs to fight this.

I'm just feeling a little sorry for myself.

a paler shade of green

Today was a chemo day.

It took exactly ten minutes to go from feeling terrific to feeling like crap.

Five good things about the last couple of days:

1. Yesterday, I did a purge of the junk in my linen closet and bathroom cabinets (and boy, was that overdue) (like, years overdue).
2. Afterwards, I went for a fast walk, the kind that really gets my heart rate up. It was a gorgeous day, in my favourite place. It was also fun watching my dog almost crash into trees as he tried to catch some pretty dopey squirrels.
   
3. We had an impromptu family dinner last night. My boys and my sweetie, his brother and my sister-in-law, my nieces and my mom-in-law. The best part of the meal was the tomatoes from our garden. And the lovely wine our guests had brought.
4. I had lunch today with one of my very best friends today, the kind of friend you want to talk to about everything. We ate at one of my favourite pre-chemo haunts, a vegetarian thai place (Sacred Garden, on Bank Street, if you live in Ottawa or ever come here), with a lovely, relaxing atmosphere.
5. As I type this in bed, my cat is curled up against my feet (sometimes, he can fool you into thinking he's a nice kind of kitty) and my dog is on his bed, snoring away. I love dog snores.

It's amazing how that little exercise always works.

I'm in a much better mood, now.

Oh and I should add that my white blood counts, and my neuts (the cells that fight infection) in particular are higher than they have been in a long time.

So, I'll spend the next couple of days in bed. And then, with renewed energy and no treatment until September 18th...

...I'm already working on my to-do list.

the hardest

This post is written as a response to the thoughts that have been knocking around in my head since reading Blondie's piece from yesterday.

I wrote last year after finishing chemo (the first six rounds, that were supposed to cure me) that it was the hardest thing I'd ever done.

But yesterday, Blondie reminded me that I was wrong.

The hardest thing that I have ever done was tell my oldest son that I have cancer.

And then that it had come back.

To knowingly inflict pain this way on my child. I don't really have the words to express how much this hurt.

Blondie and I met at the BlogHer conference. We had a conversation at the end of a wine-soaked evening, during which she told me about her mother's cancer and how Blondie would sneak into her mother's room and hold a mirror under her mother's mouth, just to make sure she was still breathing.

The very thought makes me gasp a little.

Like Blondie's mom (who is now healthy and who told me that we had at least one chemo drug in common, in yesterday's comments), I spent the days following each chemo (which were always over a week end), lying in the dark, unable to tolerate movement, sound or light. My spouse (as well as family and friends) would make sure these week ends were full of distractions for the boys but I know they found it confusing and frightening that their mother was unable to respond to their needs.

And then, last fall, I put chemo and radiation behind me and returned to work, only to find out within weeks that the cancer had spread to my liver.

When the oncologist confirmed this diagnosis, my first words were, "I have two beautiful children!" When I asked him how much time I had, he said, "Years. Not decades."

When we told S. about the recurrence, he was very stoic and calm. We explained that I would once again be in treatment but that I had very good doctors and that we were going to do everything we could to fight the cancer. This time, he didn't ask if I was going to die. I'm glad, because I didn't want to lie to him.

I was in so much pain during that time (and so swollen from fluid buildup on my liver).

And, then, like Blondie's mom, I found myself in hospital with an infection. S. did not have to step through an airlock when he visited me but he did have to wear a mask, due to a cough (one that started when he entered the hospital and disappeared as soon as he left).

Those first few weeks after the metastasis was diagnosed are very blurred in my memory, made hazy by shock, pain and the drugs used to relieve those things.

And through it all, S. did not talk about the cancer.

Then, one day, after the dust had settled and the benefits of (much gentler) chemo had begun to take effect, there was an incident at school that revealed how much anxiety he'd been bottling up inside.

I took him home, told him that the principal had told me what happened.

I told him that I wasn't angry.

I said that I loved him very much and that he could talk to me about anything.

I told him that I was already feeling much better (which was true) and that I wasn't going anywhere any time soon.

And I set about finding a therapist.

But S. balked at the idea of talking to a therapist.

And as the weeks, then months, passed and my health was obviously improving (and ultrasounds indicated that the tumours had stabilized), we saw him relax.

By the time we went to Florida in March, he was the happiest, most confident and most at ease that he had been, not just since the cancer, but since starting school, a couple of years previously.

He ended up having a great year at school and, in July, we were able to share the news with him that my latest CT scan had revealed that my "innumerable tumours" have disappeared.

So the therapist got put on the back-burner.

But Blondie has me thinking that it might be time to make finding a therapist a priority. Someone S. could meet and to whom he could turn should he need to talk.

Because who knows what the future will bring? I plan to continue to defy expectations but I need to make sure that my children are cared for, in every way, and no matter what.

I realize, too, that the impact of cancer could manifest itself months, years or even decades into the future.

Even little D., who seems oblivious (but who knows how much he is taking in?), will not remember a time when his mother did not have cancer.

Like Blondie, I've done a lot of work in therapy (and like her, it took some doing to find the right therapist), dealing with issues from my own childhood.

I need to trust that my kids will have the strength, the resources, the willingness and the courage to deal with their own cancer fallout, if and when they need to, just as Blondie is doing now.

This is not the most eloquent piece I have ever written.

But it was the hardest.

And it was important to me to write it.

cancelled

Chemo was cancelled due to low neutrophils (the white blood cells that fight infection) today. I went in by myself for the first time (which was fine, thanks to a borrowed cd player and a talking book) and was, frankly shocked when they sent me home (they won't administer chemotherapy if neutrophils dip below 1.0. Mine were at o.8. And they didn't bother with Herceptin, since I have to go back for chemo anyway).

But now I'm feeling pretty run down and my throat is scratchy. I took the dog out for a walk and couldn't go for more than a few blocks. I am wiped out.

The power of suggestion or am I really run down?

I'll find out tomorrow when I go back to the cancer centre, get bloodwork done again, wait for results and then either go home or get treated.

I'm hoping I get treated, since the rest of the summer has been pretty much plotted out. The kids are in camp when they need to be, off when I will be feeling well and we have planned a couple of getaways (including the trip to Chicago).

I have plans, dammit.

I'll keep you posted.

of neutrophils and liver functions

I had chemo and Herceptin yesterday. I always drag my ass to the first treatment after my week off. It's especially hard to go into treatment, when I've had a few days to feel like myself.

My head is still fuzzy from the Demerol I take to mitigate the side effects from the Herceptin but, all in all, I could be feeling worse.

I had bloodwork done yesterday, as I always do before chemo. I have become obsessed with the results.

Yesterday's results were interesting.

My neutrophils (the white blood cells that fight in fection) were very low. They were so low, in fact, that if they had been any lower, chemo would have been cancelled (this also helps explain why I have been feeling so tired). The trick over the next week will be to remember my Neupogen injections (all five of them), to wash my hands (and my kids' hands) a lot and to stay away from sick people.

Additionally (and more importantly), all my liver functions were well within the range of normal, for the first time in many months.

I am very pleased about this. I choose to believe that this is a sign that my upcoming CT scan (scheduled for next week) will bring good news as well.

Perhaps, even news of shrinking tumours?

Of course, another report that all is 'stable' would be good. But I'm in the mood to indulge in a little wild optimism.