Well, it’s been a few months since I’ve posted anything here. My weekly column on the CafeMom platform has been my primary writing outlet. But some things are brewing of which I wanted to make you aware.

However, first, an update on the Montgomery Three. (And I apologize in advance for the length of this thing. It’s been a busy summer!)

Maggie. Maggie, Maggie, Maggie. Our little Magnolia Grace is growing by leaps and bounds and is becoming more full of personality every minute. She’s now nine months old. NINE MONTHS OLD. It’s still so hard to believe that it was only nine months ago that I was rushed to the hospital for the emergency C-section that brought her into the world. And that it’s already been nine whole months that we’ve had her. She’s almost a year old! And what a year it has been…. Crazy!

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Honestly, I’m still in shock.

Yesterday I was tested to determine whether or not the 24 rounds of chemotherapy I received over the past six months were successful in eliminating the cancer remaining in my body after surgery.

I had prepared myself for a “thumbs sideways” result (something between a thumbs up and a thumbs down). I fully expected to be told there were some questionable spots that would need watching, and that we’d just have to wait and see.

Normally I hate “wait and see”. Post-treatment, however, my expectations had lowered to the point that I would gladly have taken a wait and see over a clearly negative result. And – positive visualizations aside – I never allowed myself to even think I might have actually have a clearly positive result. I hoped. But I tried not to go there. I tried not to set myself up for disappointment.

So they took CT scans of my chest, abdomen and pelvis, and also checked my CA-125 cancer marker. The official results were that there was “no CT evidence of residual or recurrent disease”. And that “Specifically, the nodule…posterior to the transverse colon described on the prior exam is no longer present“. Also, my CA-125 level had finally dropped into the teens at 18.6, after being at 244.3 pre-treatment.

I couldn’t have asked for better.

After the results were in, my dear friend Jill texted me, “Moo has a mom”. This hit home for me more than anything I heard yesterday (and I heard some fabulous things…it’s a wonder that Facebook didn’t crash yesterday).

Moo has a mom.

I realized recently that, over the past seven months, I had been trying so hard to shut down my brain any time that it started to go in the direction of “what if I’m not there” that I wasn’t allowing myself to picture a future with me in it at all. I wasn’t allowing myself to picture being at Maggie’s kindergarten graduation. I wasn’t allowing myself to think of growing older with Mark. I was willfully staying mentally stuck in the present, not allowing myself to think beyond the next few weeks, be it something good or bad.

I did not allow myself to think of my marriage or motherhood in the long term.

Well, that is already changing. I actually feel a little giddy with possibilities. I feel like I just got out of prison after thinking that I had a life sentence.

Now, I know I’m not totally scot-free. My oncologist said that I have a 50% chance of the cancer returning. And I will be checked every 90 days for the next two years and then every six months after that. But for now, she says she’s ecstatic. And so am I.

My primary hope (after the hope of no recurrence) is that I will never again become complacent. That I’ll continue taking care of myself, and even more and more so. And that I’ll continue to appreciate every single day as the gift that it is, even more and more so.

I have been given a second chance, and I don’t intend to waste it.

Everlasting love and thanks – SOOOO much thanks – to every single one of you. I do not think I could have gotten through this period without you. I am so, so blessed.

xoxoxo

Joanna

 

 

So, this is kind of weird. Or maybe it’s not. You be the judge.

About four or so years ago, having just gone through some major emotional housecleaning and personal inventory, I went with a friend to a small local street fair in the Inglewood neighborhood on Nashville’s east side. There, on a whim, I picked up a random piece of folk art from an artist in one of the booths. It was painted on a somewhat large piece of plywood, which I later had cut to outline the subject.

I can’t tell you what drew me to the piece, which was a bit rough and crude. But I noticed it when we first walked in and my mind kept going back to it. I started to leave without it, after we had made our way through all of the booths at the fair, but ultimately went back and bought it. It didn’t have a name, but in my mind I called the piece “Golden Girl”.

I never really found a home for it, and once I moved in with my now husband, Golden Girl ended up relegated to a partially finished basement and basically forgotten … one of those impulse buys likely destined for a future garage sale.

Recently, in connection with some home improvements we are doing, the piece was unearthed. But I hadn’t taken a good look at it for a few years, until today.

It’s kind of amazing really.

It features a woman in a yellow dress, who is inexplicably and totally bald.

And she is holding in her hands a clock on which a number is painted at each quarter hour mark.

The number at each quarter hour is 3.

The number that is, if you’ve followed our story, a recurring theme for us … a magic number.

I don’t know what it means, if anything. But there you have it. A wee reminder of universal magic on a Sunday morning.

I’ll take it anywhere I can get it.

And Golden Girl? I think I’ll keep her.

Today I am starting my 8th round of treatment. I have chemo infusion today and tomorrow, and my 24th and final scheduled treatment will be one week from today, on June 7th.

I have mixed emotions about this part of my journey being over. My body is ready for a break, as in many ways I’ve had about as much as I can physically take. But mentally I have some anxiety about stopping the thing that has been presumably keeping the cancer in check.

My doc says this is a normal and common fear.

I also had my CA-125 levels tested today as I do every three weeks. Mark and I were both nervous about it, so we were especially relieved to learn that I had experienced another incremental drop in my cancer marker protein levels.

Grafted out, here’s how my progression looks on paper:

My decreases may have slowed significantly, but the levels are still moving in the right direction.

Today we talked about next steps. We have to wait at least 30 days after my final treatment to do follow up testing. I go in July 11th for labwork and CT scans, then meet with my oncologist to find out whether or not the treatment worked. What we’ll be hoping for is a report of NED, No Evidence of Disease.

We’ll pretty much be on pins and needles until then, but trying to stay in the present and not project too far into the future.

This little muffin makes it easy to stay grounded and present most of the time:

But she is also a big part of the reason we really, really, really hope that this treatment proves to be successful.

Maggie will be six months old tomorrow. I can’t believe half a year has transpired since she came into the world that evening. Even harder to believe, she starts a part-time Montessori program tomorrow.

I’ll be there on her first day, and I hope to be there on many, many more “first” days to come.

Thanks to you all for continuing to follow our journey and to offer so much unwavering love, support and encouragement. My cup truly runneth over.

I’m also still writing a weekly column for The Stir on CafeMom.com. It usually posts on Wednesdays if you’d like to follow it. Here’s the latest one:

http://thestir.cafemom.com/healthy_living/138196/dont_cut_me_some_slack

Love and gratitude,
Jo

I saw my oncologist today for what I thought was my last pre-treatment visit. For me, a round of chemo is three treatments over the course of three weeks, with treatment on Days 1, 2 and 8. And I always see my doc on Day 1. My CA-125 levels are also checked every three weeks, on Day 1. You may recall that the last time I saw my oncologist, three weeks ago today, I got a bit of scary-ish news (See my “Wake up Call” post). And was by myself. Today I didn’t make that mistake.

My husband went with me, and we brought the Maggs along too, to meet all of the wonderful nurses and staff who have taken such great care of me during this process. Again, we thought this was the beginning of the final round. First, the better news: after hovering at the 39.5 to 41.0 level for the past 12 weeks, my CA-125 finally made a move – in the right direction – down to 32. I was soooo relieved. It’s an incremental move but movement nonetheless. The goal is to be in the low teens or single digits by the time treatment ends. And I had been getting nervous about the plateau, after having such dramatic drops in the beginning. So I was pleased about that.

Then I learned that my doc had been planning to have me do TWO more rounds (of three treatments each, for a total of six) rather than just one. Her rationale was that because I had missed all or part of at least two of the IP sessions (due to leakage), these additional rounds would fulfill her originally treatment plan for me and then some. Now, you’d think I’d be disappointed or frustrated in this further delay in the conclusion of my treatment. But I wasn’t. Not in the least. I’d actually been a bit anxious about the treatment ending, as much as I dreaded it in the beginning.

You see, there’s something comforting in taking pro-active steps week after week in the fight. The fight to best the cancer, for good. Going to chemo is DOING something. The thought of doing nothing made me a little uneasy. My doc says this is normal. And she says that most people find security in checking in with their doctor every three weeks. It means someone who knows what they are doing is keeping an eye on you. This does indeed make me feel safer.

She asked if I minded doing an additional round. I did not hesitate to say hell yes. Let’s keep going. Let’s add a few more liters of cancer-fighting fluid. Why not? Bring it on. So….my last scheduled treatment will now be in mid-June rather than mid-May. Then, about 30 days after my last infusion, I’ll get my CA-125 levels checked to see where they are – which will become my new baseline. I’ll also get post-treatment scans on my chest, abdomen and pelvis. These tests are the big daddies of all the tests I’ve had. They’ll basically tell us if the treatment has worked. And I am oh so hopeful that it has.

Until I know though, I’m focusing on positive visualization of the chemo drugs sweeping out all of the bad cells like Mickey Mouse’s wizard character in Fantasia. And trying to stay out of fearful speculation. As always, my stinkingly adorable family makes it much easier to stay positive.

Love always,
Joanna

I’m sure the fear filtered through my last post, as I was certainly writing from that place. I’ve now had a couple of nights to sleep (or not) on the information I received on Thursday. I’ve also been given the gift of a little more information, and a little different perspective.

I am fortunate to have a close relationship with my primary care physician, who happens to have his practice at the same hospital where my cancer center is located. He knew how worried I was after hearing the results of my CT scans and CA-125 test, and decided to dig a little deeper on my behalf.

Something I didn’t mention before was that when I had this appointment with my oncologist, for the first time since I started treatment, I was there alone. My husband, who has been with me for every doctor’s appointment since all this began in December, could not be with me Thursday. He strongly encouraged me to have someone with me for support and another set of ears, but I told him I’d be fine. Everything had been going so well, I felt like these check-ups had become almost a formality. Turns out I probably should have had someone with me. As it was, I was a little too freaked out to ask questions in the moment.

So, the next day, my doc paid a visit to the Radiology Department at the hospital and reviewed my pre-treatment and mid-treatment CT scans with the radiologist. There were several noteworthy differences between the two:

First of all, the 8 or so tumors that were visible prior to the surgery were essentially gone.

Second, the more recent CT was murky and difficult to see, as the scans were made after about six hours of chemotherapy had been pumped into my abdomen. It was hard to see much of anything clearly because of all of the fluid.

According to the radiologist, the little places near my liver and spleen could be cancer but could also be any number of other things, including little diverticuloses filled with the contrast dye I had just ingested. The radiologist said that if I weren’t a cancer patient, they might not have been flagged at all.

My doctor said that he had seen many scans of patients for whom chemotherapy was failing. In those situations, tumors grow and new ones pop up despite the chemotherapy, which indicates that the particular cancer at issue is resistant to treatment. He said that this was not the case with me. He said that he has no reason to believe the treatment is not working in my case, and that there is no reason not to stay the course.

He also spoke with my oncologist, who said that she rarely orders CT scans midway through treatment. She only did it to try to put my mind at ease (and probably now wishes she hadn’t). The normal course of action is to wait about 30 days after treatment is completed to take a CT scan. So that’s what we’ll do next.

They also said that IP chemo causes inflammation in the abdomen, which can skew CA-125 levels. They reminded me that the numbers are still down 83% and haven’t risen.

Bottom line – we still have to wait and see about those questionable spots. But I shouldn’t burn energy on freaking out. We don’t know that anything is dire. These spots could be nothing.

Given this new information, I’m choosing to reject the notion that these spots are malignant. And I plan to ask to personally eyeball them on CT so that I can better visualize them disappearing altogether.

I’m still a little nervous about it all – and my confidence has been shaken a wee bit – but I’m coming out of it. I’m writing tonight more from a place of hope and strength than fear and doubt. I hope that comes though.

I’ve still got this.

Well, to update you, I had a pretty sobering visit with my oncologist today.

As you know, my CA-125 protein levels – the cancer marker – are checked every three weeks. As of six weeks ago, they had decreased 83% from where they were pre-surgery. Then, three weeks ago, they were tested and hadn’t dropped, which worried me a bit. So my oncologist ordered CT scans to hopefully ease my mind.

Today my CA-125 levels were tested again. I met with my doc to talk about the CT scans for the first time and to hear the status of my CA-125. The news was less than good.

First, my CA-125 levels still hadn’t dropped; they seem to be stuck. Then there’s a couple of questionable spots near my liver and spleen that the radiologist said bear watching. The spots are not clearly visible, as there is a lot of fluid in that area because of the infusion of IP chemo directly into my abdomen. But they are worrisome.

I asked my doc what would happen if the spots were still there after treatment was finished, if she’d need to go in and remove them surgically. She said no, no surgery. I asked why and she said that she would tell me because I asked, but I wouldn’t like the answer.

She said that if these places proved to be malignant and didn’t respond to the best chemotherapy available, it would do no good to remove them, except perhaps to make me feel better psychologically. She compared them to dandelions. She said she could go in and pluck the two visible dandelions in a big meadow, but she couldn’t do anything about the possibly hundreds of microscopic dandelion seeds spread around the meadow. In other words, if those places around my liver and spleen are a cancer powerful enough to live through 21 blasts of the best chemo available, my abdomen is likely filled with untold amounts of cancer cells waiting to sprout and grow.

I’d be fucked.

And radiation isn’t an option either.

So basically, I wait. And as Tom Petty said, the waiting is the hardest part.

Of course I’m scared shitless. I had gotten a little complacent about being in the home stretch of kicking cancer’s ass. But I may be going into overtime. I may need a Hail Mary. (I feel certain I’m mixing sports metaphors here in an unforgivable fashion. My apologies to those who understand sports and are cringing right now.)

I posted an article on CafeMom this week about body image and paying more attention to inner health than outer beauty. You can read it here.

And with the encouragement of several friends, I also entered a “real woman” beauty search sponsored by More magazine, thinking that it would be cool if a different kind of beauty – bald chemo chick trying to focus on inner health more than outer beauty – was chosen to represent.

I confess I feel a little silly now about both of these things. They seem somewhat superficial in the face of, hey, guess what, your treatment might not be working so well after all.

I’m trying not to go down the rabbit hole with this, but rather to keep my head in the same place as my ass. After all, we don’t know what these spots are at this point. Although my doctor is worried and so am I, these spots very well may not be cancer. We just don’t know.

So we stick with Treatment Plan A. And we wait. The hardest part.

Love and gratitude,
Jo

I wrote last week that I was awaiting the results of some CT scans ordered by my oncologist to – hopefully – assure me that no new cancer was growing inside me. I have not yet met with her to get the official word, but her nurse has gone over the radiologist’s report with me and advised that the scans showed nothing new. This was a relief.

Okay, I admit I was also hoping she would tell me that the scans showed that all signs of cancer were gone. Disappeared. That wasn’t the case. But apparently the spots are smaller than they were. So that’s something.

After the last round I realized that I have now completed five rounds of chemo. At three sessions per round, that’s 15 sessions under my belt. This means that, assuming the most recent plan stays in effect, I only have two more rounds or six sessions to go. Which means I’ll be done with chemo by the end of May.

Hard to believe.

In January the treatment plan seemed endless. Now I’m nearly three-quarters of the way through.

Part of me can’t wait for it to be over. The side effects are becoming more difficult as my body starts to cry “uncle” in some spots. However, part of me wonders if six more sessions is enough. If anything will ever be enough.

Working on trusting the process and taking it a day at a time. It’s gotten me this far!

And the latest on our girl? She’s now sitting up in her little Bumpo chair and feeling very proud of herself.

Time is flying.

Well, I haven’t posted a plain ol’ fashioned health update in quite awhile. Mostly because there hasn’t been much new to report. I’m rocking along with the chemo, and am about halfway through at this point. Despite what I was told in the beginning – probably so as not to scare the hell out of me – chemotherapy seems to be a pretty cumulative experience, at least for me. The more I get, the more I feel the side effects.

Don’t get me wrong, the side effects aren’t something I cannot endure. I may get queasy, but I’ve never thrown up. And my energy may wane after treatment, but I’m still functional. I’m one of the lucky ones.

Honestly, the thing that affects me the most negatively are the side effects of a drug called Neulasta. Neulasta is a white count blood booster with which I am injected once every three weeks. Not only does the shot itself hurt like a mother, the side effects include bone, joint and muscle pain; heavy duty fatigue; and wicked headaches…like a really bad flu. But it’s worth it so I don’t get sick. So far, so good in that regard.

As you know, I was on quite a downward streak with my CA-125 protein levels, the cancer marker. A month ago, after two months of treatment, I had experienced an 83% decrease, which is phenomenal. However, when my levels were tested last week, they appeared to have plateaued…no notable increase or decrease.

This was a bit concerning to me, as I had been experiencing some abdominal pain over the past few weeks. The story I had been telling myself was that the cancer was regenerating itself and growing inside me…the pain was from new tumors setting up shop.

I told this to my oncologist who said that, first of all, this was pretty normal. In fact, she said that I would likely think that every ache or pain for the rest of my life was due to a recurrence of the cancer. I can see that already.

Second, she said, she was not worried. She said that the abdominal pains were likely the result of my insides being hosed down with deadly poison nearly every week. And, she said, if the lining of my abdomen was inflammed, this could skew the CA-125 results. So, not to worry.

Of course, I was still worried and she knew this, so to ease my mind, she ordered CT scans of my chest, abdomen and pelvis. I had the scans Friday night, and should get the results in the next day or two. I’ll keep you posted.

The waiting is hard. I continue to see new friends and acquaintances thrive in treatment then take turns for the worse, never to bounce back. This disease is brutal, just fucking brutal. But I still hope to beat the odds. Because despite all of this cancer business, life does go on. And I am enjoying it immensely for the most part. I am loving our life on the hill, my husband, baby and me. Cancer or no cancer, I don’t think I’ve ever been happier. I just want it to continue. And I’m going to do whatever it takes to make that happen.

On that note…our little Magnolia had her four-month check up today with the pediatrician. She’s sprouting like a weed, that girl. She has grown four inches in four months. She’s 2 feet, 1 inch tall and in the 84th percentile for height. At 13 lbs, 14 oz, she’s around the 50th percentile for weight. With chubby cheeks and fat little thighs, you can tell she’s thriving just by looking at her.

Her latest trick? Laughing. Her silly daddy can get her going better than anyone. And if a baby’s laughter can’t cure whatever ails you, I don’t know what can.

So, onward. I’m going to continue to submit weekly columns to the Stir on the Cafe Mom platform. If you’d like to check them out, go to http://thestir.cafemom.com/column/mommy_has_cancer. They’re typically being published on Tuesdays or Wednesdays if you have some time to kill. (The Stir is a great website, period…you can get lost on there, in a good way.)

We continue to be amazed and astounded in the wake of the love and support we receive from you folks every day. It is what shores us up and keeps us going.

Now go call your mama or someone special in your life and tell her that you love her.

Love and gratitude,
Jo

So, the very cool Stir platform on the Cafe Mom website has picked up our little blog and will be running it as a weekly column…so surreal!

The column launched yesterday, with the first post being designed to tell part one of the story. There will be a bit of overlap/duplication in the first few columns, as new readers get brought up to speed, but the blog and the column should soon be in synch. And I’d be honored if you’d continue to follow.

This blog started out as a way for me to essentially hide behind the keyboard and keep friends and family informed of new developments, without me having to have difficult face-to-face conversations. However, it quickly became something much more for me…certainly therapeutic, as well as a vehicle for an exchange of positive energy like I never could have imagined. I’m endlessly grateful for the continued love, support and well wishes. And I’m hoping to ride this tide of healing energy all the way to cancer free. You people are like a chemo turbo boost and then some.

Here’s the link to the new column: http://thestir.cafemom.com/column/mommy_has_cancer

Check it out if you’re of the mind. And I’ll continue to keep you posted here as well.

Love and gratitude,
Joanna