Hope in a Storm

The head nurse in the Infusion Room (I call it the "wig room") at my oncologist's office is a fireball of energy. His name is Aaron and he runs a tight ship. He is also a ray of sunshine and a breath of fresh air. He wears Dr. Seuss lab shirts ("One Fish Two Fish" is my fave). He has a quotation board on which he writes words of wisdom and encouragement for the patients to read while they are receiving their poison. I thought I should share one of his latest offerings -- it's one of the best so far:

"And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about." -- Haruki Murakami

Pretty heavy stuff, ay?

In my last two posts, I have reported that there is very little to report. The areas of cancer that still exist are considered "stable." That's the word they use. Stable. They never say, "You're getting better" or "I think we're making progress." The doc just says that everything looks stable and that stable is "good."

Ok. That's cool. I get it. The chemo has had an effect, but if I want to stay alive, I have to be on this for the rest of my life? No one actually says that; but it's certainly implied. Chemo is NOT a cure; it's a TREATMENT.

I would like a better prognosis. I am seeking other options. I'm pretty sure that if I want a respite from this chemo / study drug treatment (I am into the 20th month of this now!), I am going to have to take charge. I am going to have to formulate a plan; no one else will do this for me.

I now quote Dr. Robertson Ward, a practicing doctor in Illinois who has written a book about molecular cell biology (more on that in another blog, perhaps). In an introductory video on his website, he says this: "Some of you have been told, 'well, you're just gonna have to live with it.' And your level of hope has perhaps been shattered or diminished greatly. Hope is really belief coupled with a plan." I am seeking that plan. More to come as I seek and learn.

Blog Neglect

Alas, I am guilty of "blog neglect." I have not posted any news since February. Mea culpa. Forty lashes with wet noodle are due me.

To those of who you have checked.... and checked.... and checked.... and found nothing, I do apologize. I have started to receive emails, phone calls, cards in the mail. And today my old friend Susan Carr (visiting the old 'hood from Minnesota) actually pulled up to my house in her car wondering if I was ok!

Well, I am ok. There is actually very little to report since the last update. I am still on IV chemo 3 weeks on / one week off + oral chemo study drug. Still having CT scans and bone scans. I am now into the 17th month of this!

Yes, it is getting old. And so am I. This  is good; means I am still walking the planet and breathing air.

Scans are still showing lingering signs of the disease, with some areas diminishing in size. Scans are just photos. Wish they could sit up and talk and say, "Look, chica! It's working!" Or..... "Forget it, chica! You're all washed up; why do you even keep trying?" But alas... all we can do is stare at the photos and make stabs in the dark. The oncologist says it's all good, because there are no NEW areas of cancer. Ok, I'll go with "good."

There was a rib that showed signs of the disease months ago; now that area is clear. But there are still "shadows" on the scapula and skull.

And so I keep on keepin' on. Side effects still occur: fatigue, loopiness, bad bowel activity (joy).

 I will try to report more frequently, even if it's just to say, "same old, same old."

Sorry to have worried some of you. Thanks for asking; and for checking.

xoxox

Progress

I know it's been a while since posting, but there has been very little to report.

But progress IS being made, albeit at a snail's pace, or so it feels to me. Had another bone scan last Friday. Results are good: all "shadows" on skull, scapula, and rib (three areas of bone metastasis) are reduced in size. This is very positive news.

So although the cancer is still there, we are making slow and steady progress. Will it ever be gone? No one can assure me of that at this point. But if we are moving in a positive direction, then we must see this as a sign for celebration.

Onward, then, with the treatment. On the 29th of February, I begin Cycle 11 (that's 11 months!) of infusion chemo. I am still tolerating it pretty well; still taking a lot of extra supplementation to boost immune system. Mistletoe has always been at the top of that list; I inject it every other day. Neuropathy is under control with L-Glutamine, twice daily. Many other remedies are in the bag of tricks.

I am told by so many that I am being prayed for and for this, I am eternally grateful.

Dem Bones

In the past three weeks, I have had two scans, a full-body CT scan and a full-body bone scan. The previous CT scan showed some improvement to "shadowy" tumor areas. However, previous bone scans have not shown any progress -- until now.

Get this, folks: the latest bone scan showed NO NEW areas of metastases; in addition, the report showed a diminishing (!!) of most of the previous bone shadows.

This....is.... great.... news. It means that we are on the right track in treatment protocols.

So.... although the tumor areas have not been completely eliminated, progress has been made. I will be continuing with chemo infusions. For how long? Can't say at this point.

I am tolerating the protocol pretty well. I do get tired and occasionally feel loopy, but am able to continue playing church gigs, singing, and teaching. I have begun experiencing some neuropathy in the left hand. It is possible my naturopath will recommend increasing my intake of L-Glutamine, which is the supplement that helps counteract the effects of hand and foot neuropathy.

Many have wondered how I have been able to tolerate 8+ months of chemo without experiencing extreme side effects. I credit my naturopath M.D., who has helped me manage a heavy course of supplementation to counteract the side effects of chemo. I actually take a supplement to "up" my white- and red-blood cell counts; and another to help lower blood pressure. I take six mega-multi-vitamins daily, vitamin D-3, black currant oil, melatonin, colloidal silver, calcium...... and on and on the list goes. I am even taking THC oil (cannabis oil). And, of course, I still give myself mistletoe injections every other day to bolster my immune system.

Living a relatively normal life -- in my case, this means making music and being with all my musician friends -- has been key for my survival. And, of course, prayers and plenty of good vibes from everyone have made an impact; of that I am certain. Thank you, all, for your support and love.

Onward.

November Update

I'm sorry that my absence from posting has caused concern to some of my blog followers. There has really been very little news to report. I am about to begin Cycle 7 of chemo infusion treatments. So far, have had 18 IV infusions in addition to the oral study drug.

Thankfully, side effects are not bad enough to keep me from teaching piano, playing gigs, and singing. Some tummy upset and general fatigue come and go, but I do my best to slog through those times. Having NO hair -- anywhere!! -- is just plain weird. I was forewarned about the head-hair loss and have adapted with wigs and hats. But it's kind of freaky having no eye lashes, no eyebrows, and no NOSE HAIRS!  I find it rather amusing to pinch my nostrils together and they just stay stuck in that configuration for several seconds. Gotta find humor where we can, ay?

My cough is almost totally under control, thanks to understanding the effects of acid reflux. The voice is not totally recovered, but I am happy to report that I am back to doing some singing.

Next scan is scheduled for November 15. Let's hope it shows positive results.

Looking forward to accompanying my grandson Jacob and his family to see a Penn State hockey game this Friday -- in honor of his 10th birthday!

xoxox to all....

Scan Results

Went in for blood work this a.m. in preparation for another week of chemo. I was anticipating seeing my oncologist in two days to discuss results of last week's scan. But my study coordinator stated that the doc wanted to see me prior to my next chemo treatment, just in case we needed to change the protocol based on scan results. So in the late a.m., I was squeezed into my oncologist's schedule.

The report showed improvement (i.e., reduction in size of tumors) in several areas: breast tissue (original tumor site), lymph, and liver. All of those areas show little, if any, tumor presence. No new growth. There were still anomalies in some areas of the bone.... in scapula (no change from before) and in the lower spine (no change). A new "shadow" appeared on a rib fairly close to the original tumor area. I had felt some soreness there earlier in the summer, which had dissipated. But there now appears to be "activity" there. I had felt that I had bruised that area when doing some gardening a couple of months ago. The doc said that inflammation due to injury often looks the same as cancer activity on a scan; so it is possible that this area might not be cancer at all, but the result of inflammation due to bruising. Let's hope that is the case!

All in all, the news I got today was good. We are sticking with the present chemo protocol, especially since I am tolerating it pretty well. Cancer blood markers were drawn today; I will have results of those on Wednesday when I begin Treatment I of Cycle 6 of chemo.

Onward.

Scanning the Horizon

This will be a quickie post, just to check in.

I am chugging along with treatment and, so far, it's fairly tolerable. Last week marked end of Cycle #4. I have now had 12 infusions of chemo along with oral study drug. I will have results at my next oncology appointment... September 14.

This coming Thursday (September 8), I will have another full-body scan. My last scan (in July) did not really show any improvement, except for some change in right lymph nodes. I am not thrilled with having so many scans, but alas, I am now on this bus and I am not the driver.

So let's try to enjoy the ride!