I wrote recently about having auditioned to participate in Nashville’s first production of Listen To Your Mother, a live staged reading of essays written by real people about motherhood. The event took place on April 26, 2014, and was by all accounts a tremendous success. Similar productions were held in 31 other cities around the same time, and it was a unique and wonderful experience to be part of such a magical, powerful movement … the brainchild of LTYM founder Ann Imig. Read More →
I just had sex with my husband and it hurt like hell. It’s not because of anything he did; we’ve always had great sex. It’s just that intercourse has been painful since my cancer surgery, which included a radical hysterectomy. (This involves the removal of the entire uterus, tissue on the sides of the uterus, the cervix, and the top part of the vagina.) The painful intercourse could be caused by a number of factors. It is likely that I have scar tissue where my cervix was removed, and friction against the vaginal cuff is painful. There’s also a condition called vaginal stenosis, where the vagina is actually shortened or narrowed as a result of vaginal radiotherapy or certain gynecologic cancer surgeries. Read More →
So, as part of my treatment, I have to go the lab at the cancer center and give blood for various levels to be tested and monitored on a weekly basis, even in my “off” weeks of chemo. I started the process three weeks ago today, and have visited the lab three times now, the third time being today.
On my first visit to the lab, as I was sitting in the cubicle getting my blood drawn, I noticed that the band Journey’s song “Faithfully” was playing on whatever sound system they have there. This took me out of the place of fear in which I found myself on the beginning of Day One (of a very different journey), and transported me back to junior high and high school.
Music has a way of being able to do that, as most of you know.
To say that I was a Journey fan in those days would be an understatement. Starting with their third album, Infinity (yeah, yeah, I’m really dating myself now….I was in the sixth grade when it was released), I became obsessed with the band (as well as its lead singer, Steve Perry). As each album was released, I immediately used my allowance money to buy it. One of my very best friends shared this obsession, and we would spend hours wearing out our vinyl and speculating about each of the band members (especially Steve). The obsession continued through the Frontiers album. And although I lost interest in the later stuff, my fondness for their body of work from ’78-83 still exists. The shit holds up to this day, and my husband shares my deep appreciation for it (yet another of a million things we have in common).
Anyway, back to the lab. Hearing Faithfully – a super cheesy ballad that was played to death on the radio (remember radio?) until even I didn’t like it anymore – reminded me of being the awkward 10th grader I was then, fantasizing about being in the kind of sappy romantic relationship that was the subject of the song. And I realized that I now actually had that kind of “forever yours” relationship. Super cheesy, yes. But it was a much needed distraction that morning, and gave me a humbling jolt of gratitude to keep me going.
Cut to Week Two in the lab. Back in the chair getting blood drawn, and Journey’s “Don’t Stop Believing” was playing. Perfect song for where I was and still am; and I was once again transported back to those high school days. (And I started to think this was some kind of sign…I do things like that…look for signs.)
So today I walked into the lab wondering which Journey song would be playing. However, instead of Journey, Prince’s “Purple Rain” was coming through the speakers. Now that song truly was the soundtrack to my senior year of high school. I bet I saw that film at least 20 times in the theater, and that is not an exaggeration. Hearing the song today (which still holds up, by the way….always will), it struck me how much time had passed since I first heard that song. Nearly 28 years ago…what?! Holy shit.
I became emotional thinking of how young and innocent I had been then. And how I could never have imagined that one day, far in the future, I’d be sitting in a lab in a cancer center, my new husband and baby waiting for me, getting blood drawn to monitor the effects of chemotherapy on my system, listening to that same song. Whoa. (By the way, two things that haven’t changed: Purple Rain is still a fucking great album. And Prince looks as good now as as he did then.)
I’ve said before that I was a late bloomer, and it’s true. I’m 44 years old, and in some ways I feel like I’m just getting started. I was 40 before I met the man to whom I am now married and with whom I hope to grow old. And I just now had my first (and last) child. Some of my peers are becoming grandmothers and I have a newborn.
I believe that everything happens exactly as it is supposed to happen, exactly when it is supposed to happen. I would not have been a good mother in my 20s or even in my 30s. Nor, in those days, was I the best wife and partner I could have been. I did not take relationships or commitment seriously. I was very impulsive; very impatient. I didn’t want to take the time to slow down and think about what I was doing – and the consequences – before taking action. Those default settings are still there, but I now at least try to think a bit before before acting. And I definitely consider how my actions might affect me and others.
It wasn’t until I was 39 that I really got serious about looking at myself….deciding to do the tough inner work to change unhealthy patterns of behavior and look for the authentic self I knew was inside me. Once I started on that journey, life started opening up for me in positive ways I never imagined. Don’t get me wrong…I don’t have it all figured out. Far from it. I’m very much still a work in progress. I don’t think any of us is ever “done” growing and evolving. Not while we’re still breathing anyway.
I wouldn’t change much, if anything, about my past. The choices I made, the relationships and experiences I had, even the mistakes and missteps…all made me the person I am today. And I like that person.
I’ve gone through many transformations in my life. There was the awkward girl with the feathered hair daydreaming about Steve Perry. And the goth girl with the bad perm going to see Purple Rain 20 times in the theater. And many, many iterations thereafter.
A few years ago I experienced one of the biggest transformations of my life when I met and fell in love with my husband. Love, real love, I found is extraordinarily transforming….feeling totally comfortable being authentic with someone…having no secrets….letting that person see behind the curtain, and finding that they love you anyway. Trusting. Loving unconditionally. Accepting love. Therein lies true freedom.
Then, another massive transformation….motherhood. I never thought I’d be a mother. Once I passed a certain age, I sort of let go of the notion that it was going to happen. My husband was kind of in the same place when we met. He and I were the exact same age; had both been previously married; had never had children; and had no plans to do so. And we were both totally okay with it. Then, something happened that made us both re-think the idea of starting a family. So, after much time and serious consideration, we decided to put it out to the universe that we would like to have a baby if we were meant to have a baby. And then we had a baby.
We were transformed in that moment, the moment our daughter was born. One minute we were this DINK (dual income, no kids) couple with tons of freedom and flexible responsibilities; the next we were…parents. Everything changed in that moment. And not in the ways we had feared, but in wonderful ways we never could have imagined. Ways that reveal themselves to us more each day. Neither of us will ever be the same again.
Now I’m going through a different sort of transformation. Or another simultaneous transformation. I realized it the other day when I was looking in the mirror.
Have you ever really taken the time to look yourself in the eye in the mirror…to truly make eye contact with yourself? And not just for a few seconds, but for actual minutes. It’s harder than you’d think, at least it is for me. When I took the time to do it recently, I saw something different in my eyes. I was different. I had been through a stunning and unexpected diagnosis, two major surgeries, and two sessions of chemotherapy…so, of course I was different. But this was very strange. I almost didn’t recognize the woman I saw in the mirror. She looked a bit sad, a bit wiser, and a bit…something else. I can’t really explain it, but there was a definite change. A loss of innocence maybe. And a much more profound appreciation for the simple experience of standing in my bathroom and looking in the mirror. It was an emotional thing.
I call this post Part I because I know that this particular transformation is just beginning. I am changing, inside and out. I have scars that weren’t there six weeks ago. I am missing quite a few pieces and parts. My scalp is tender and sore to the touch now…I know that hair loss is eminent, and I have some sadness and fear about that. I know that my skin my also change, and other things as well. I might look like a sick person. Strangers on the street will likely know I have cancer. I won’t be able to hide it anymore.
But I have no choice other than to deal with each new thing as it happens.
I told my husband I was writing about transformation, and he asked if part of my transformation would include being able to ask for and accept help. I told him I didn’t know but that I’d certainly try to be more aware of it. This is still very hard for me, but I’m saying “yes” to offers of help now occasionally and finding that it really is…helpful. So I may try to do more of that.
There are lessons in this for me every single day. I’ve had some very dear dear souls, including my husband, tell me they wish that they could take this – this cancer – away from me, or that they wish it was happening to them instead. I thank them sincerely from the bottom of my heart, but also know in my heart that if I skipped over all of the hard stuff to the cancer free part (and I truly believe there will be a cancer free part), I would miss the lessons. And missing the lessons would be missing the point of all of this. This being the cancer and all of the circumstances surrounding its discovery. This being the birth of our healthy child against extraordinary odds. I know there is a point to all of this. There must be a point to all of this.
So all I can do is be grateful each day for the lessons, and to appreciate the ongoing transformation. My hope is that I’ll come out on the other side of this a healthier, stronger, wiser, more grateful, choosier and more compassionate woman, with a greater appreciation for absolutely everything. I’m already a bit more of all of those things than I was just a few weeks ago, pre-diagnosis. And the lessons continue.
Love and gratitude,
P.S. Speaking of gratitude and transformation, our little 6-week old Magpie is smiling now…is there anything more heart-filling than that?
Driving to the hospital three days ago, all I kept thinking was, “I can’t wait ’til this surgery is behind me.” Well, now it is. The surgery is over; we know what we are dealing with; and we’re now headed home for the holiday. AND we have a chemo date….the 18-week eradication process begins Thursday, January 5th.
Fucking cancer – the verb form, not the adjective intensifier – takes a lot out of a girl.
To be more specific, undergoing chemotherapy – one really good and proven way to fuck over many kinds of cancer – can be quite difficult.
Some of those who have ridden the chemo train, either personally or alongside someone they love, may have shaken their heads ruefully upon reading my upbeat account of how the first and second days immediately following the first two chemo sessions weren’t so bad. They may have been thinking, “‘just you wait, you poor girl…that train is going to hit”.
Well, for those of you who were thinking this, you were right. It did hit.
To recap: I had my first chemotherapy treatment, intraveneously, last Thursday. I then had my second chemotherapy treatment, via the interperineal port in my abdomen, last Friday. The IP infusion was the big daddy of treatments and took all day. What I know now but didn’t know then is that only about four out of every ten patients are physically able to complete six cycles of IP chemo infusion….sometimes the body just won’t cooperate. It’s heavy duty shit, and it takes a heavy toll.
The train hit on Monday, Day 5 of treatment, and didn’t leave until Wednesday. It wasn’t a high speed rail, mind you, like the Eurostar or that crazy train in China that goes 300 miles per hour. Fortunately, it was more like the tame old (I said tame, not lame) Opryland Railroad that leisurely circled the famed theme park back in the day. (Yes, I am proud to say I grew up in Nashville, Tennessee. And I’ve just shown my age.) But I was still slowed and a more than a little bit humbled by the effects of the treatment.
I’ll spare the details, but suffice it to say that I wasn’t up to doing much other than taking careful care of our little one and finally learning what all of the hype was about Downton Abbey. I never got sick, but I did feel like I had the flu, and was very dizzy and weak at times. It made me realize that I’ll likely need to have help on the “down” days following treatment, if only to make sure I don’t pass out and drop our girl on her head. And we’re very blessed to already have options for such help in the cue.
Cut to yesterday, Wednesday, Day 7. I was feeling pretty good by comparison. I was able to be productive, and my husband and I were actually able to have our first night out with (or without) the baby since her birth. We had dinner at one of our favorite little local places with two of our favorite people in the world, and it was quite nice. Normal, even. (And the Magpie kicked ass at being out in public, by the way….one would have thought she had been doing it for ages.)
I felt so good, in fact, in the wake of my relatively normal day and evening, that I started to get that old dread feeling in my stomach around midnight last night…the pit. At first I thought I was starting to feel sick, as though I might have overdone it; then I realized that what I was feeling was anxiety. I was just starting to feel good. I didn’t want to go back today, Day 8, and have more IP chemotherapy. I didn’t want to feel like shit again; to be non-productive; to need help.
This is where that old phrase “be careful what you wish for” comes into play.
Long story short – medical details can be so tedious – due to a (hopefully short-lived) complication relating to the prior IP treatment I received, I was not able to have my third session of chemotherapy today to complete my first cycle. And I – the girl who wasn’t looking forward to chemo – was not happy. I was pissed. At my body, mostly, because it was no one’s fault. And as my oncologist pointed out, I am not my cancer. I am a person. And every person is different. Every person reacts differently to treatment. And they are treating me, not my cancer.
That’s all well and good, but, dammit, I did not want to wait another two weeks to try again. I did not want to have to have a seventh round tacked on to the end of my treatment, thereby extending my 18 weeks to 21 weeks (assuming my body can withstand it). I wanted to stick with the original plan, but my body just wasn’t cooperating.
This reminded me of two things. First, my wise younger brother lovingly pointing out to me a few weeks ago my penchant for setting expectations. And we’ve seen where that has gotten me in the past.
Second, it reminded me of a quote by author Marie Stilkind:
“Today I know that I cannot control the ocean tides. I can only go with the flow. When I struggle and try to organize the Atlantic to my specifications, I sink. If I flail and thrash and growl and grumble, I go under. But if I let go and float, I am borne aloft”.
I know this. I’ve been given this lesson countless times in the past. I own the t-shirt (but apparently keep misplacing it).
So, here’s yet another reminder. The best way to make the universe laugh is to make plans. And all I can do is remain determined to follow the best medical advice I am given; to stay strong so that I can see this motherfucker through; and to take it one damn day at a time in the meantime.
And there’s still plenty of silver lining. I had the pure joy of hearing our daughter laugh out loud in her sleep this week. And she’s going to have a killer laugh, I can tell. A dear friend in London, who actually had a darling baby boy the same day we had our darling baby girl, recently experienced the same phenomenon, and said that she believed she then knew how angels must sound. She wasn’t kidding.
And my concern about our child and animals not wanting to be around me once I had been filled with toxic chemicals? Unwarranted. They are as sweet and snuggly and attentive as ever, probably even more so now. (When our Australian Shepherd can be pried away from our baby, that is…he has apparently imprinted on her like some werewolf in the Eclipse series….)
However, perhaps the most gratifying news of the week stemmed from a conversation I had with my obstetrician…my long-time physician who saw me through my high risk pregnancy and delivered our little girl 41 days ago. I contacted her to let her know how very grateful I was that the cancer wasn’t discovered at any point during the pregnancy, which allowed us to fully enjoy the experience and not have to make any difficult decisions. I also wanted her to know how glad I was that we did not receive the lab results until five days after our baby was born, giving us five days of bliss during which we were oblivious of the cancer that had invaded my body.
During our conversation, she told me that she had gone back and looked at the numerous ultrasounds that had been taken during the pregnancy and confirmed that there was no sign of the cancer. She also told me that there was no good explanation for how I was able to get pregnant and carry a healthy, perfect baby to term, given the extent of the cancer. By the time Miss Magnolia Grace came along, both Fallopian tubes were totally shot, consumed with cancer, and it had metastasized to both ovaries, the uterus and beyond. Yet here she is, laying across my lap as I type these words. This little girl was clearly meant to be here with us.
So, again, onward. Today was a minor setback, but I’ve come to believe that there are no accidents. I am right where I am supposed to be. And I’m going to enjoy the hell out of my husband, daughter and life every day that I can….especially during this two-week hiatus from treatment.
Love and gratitude,
I didn’t realize it until after the fact, but, like my husband, I had been telling myself a certain story about how all of this cancer business was going to go down. Because it wasn’t known whether the “questionable” spots on the CT scan were malignant or benign, I chose to assume they were benign. And because it wasn’t known whether more cancer existed inside me beyond the mass that was found on my fallopian tube, I chose to assume that none did. I also told myself that once the doc got inside and took a look around, she would realize that an IP port wasn’t necessary…that I likely wouldn’t need chemo to be hosed directly into my abdomen.
We had been telling ourselves these stories, my husband and I, unbeknownst to each other. And apparently our close friends and family had been telling themselves similar stories as well. This was certainly a living example of the phrase, “expectations are premeditated disappointments.” If we had kept our expectations in check, the outcome of the procedure would not have been nearly as jarring.
This wasn’t like me, this erring on the side of optimism. I’m the girl who, in the past, would wonder if her headache wasn’t a brain tumor, or who would speculate that the mystery ache or pain was cancer of the whatever. But, for some reason, with this cancer diagnosis, I was telling myself that surely it wasn’t as bad as all that…that surely this was a “mild” case of cancer that would be easily treated and stomped into submission. It was quite sobering to find out that I was wrong.
I feel sorry for my poor husband, as he ended up having to be the one to deliver the news to me. It seems that I was so out of it after surgery that I did not remember my oncologist or primary care physician repeatedly telling me the results of the surgery. Apparently, I asked them several times what had been found, and they told me, but I was too drugged to process the information or retain it. When I was finally lucid enough to take in the information, Mark and I were alone in our room at the hospital and it was the middle of the night. I began peppering him with questions, which he patiently answered for what was actually the umpeenth time. My reaction this time, however, was different, because I was actually able to understand and absorb what I was being told, which was this:
The cancer had spread to other areas. The “questionable” spots were definitely cancer, and there were other cancerous areas too. There was a particularly large cancerous tumor on my omentum (area of the abdomen) that had not even shown up on my CT scan. It was not necessary to wait for the pathology reports….the cancer was visible to the naked eye, nothing questionable about it. Because of the nature of the spread, the cancer was graded as a Stage III-C, one step below a Stage IV. And there is no Stage V in cancer world. An inter-perineal port had been installed so that the chemo could be administered directly into my abdomen, as well as intravenously.
Fuck. This was the real deal.
The first day post-op was basically spent trying to get pain under control and get me physically comfortable, which we did. The incision wasn’t as bad as I had imagined, although it was still a bit gnarly to look down and see railroad tracks of surgical staples marching down my abdomen and around my belly button and beyond. Plus, that ominous port-thing at the top of my rib cage. Adjusting to these physical differences was the goal of Day One.
Getting up and down was a bitch. Still is, although I’m much better today. Today, Day Two, I woke up with a new attitude, determined to do whatever I could to heal as quickly as possible so that I could get on with the next phase of treatment. I’ll spare you the gory details, but suffice it to say that I successfully met all goals today. As I result, I’ve been cleared to go home in the morning. I think I even impressed my uber hardcore oncologist, whom I happened to pass as I was power walking through the halls on my floor. After seeing me in action, she had no choice but to give me the all clear for discharge. A small victory. Plus, we’ll get to be home in time for Christmas.
Physically, I’m ahead of the recovery game. Wrapping my head around the new information about my diagnosis is another issue. I’m doing much better today on that front as well, but it still seems quite surreal.
Right now, my primary goal is to heal as quickly as possible from the surgery so that I can start chemotherapy the second week of January. I’ll do six rounds of chemo, with the drugs being administered on the first, second and eighth days of each three week cycle. The chemo will be administered directly into my abdomen as well as intravenously…aggressive therapy for an aggressive cancer. At this point, I just want to do whatever it takes to ensure that the disease is eradicated altogether. So that’s what we’re going to do.
My perspective today is very different than it was 72 hours ago. And I’ve learned a valuable lesson about setting expectations. My goal today is to try to take this, all of this, a step at a time. Next steps…go home with my husband and baby; celebrate the holiday together with our families; then focus on getting as strong and healthy as possible before starting treatment. And continue to enjoy every minute of the process.
My doctor is encouraged by all of the motivators I have in my life, my husband and daughter being at the top of the list. And he’s right. I have so much to live for, so many reasons to get this behind me and get on with living. I have to admit it was a bit eerie this week to find us in the same configuration we had been just a few weeks ago…me in a hospital bed, Mark on an uncomfortable pull out chair/bed next to me and our little daughter in a hospital bassinet between us ….with the circumstances so incredibly different this go-round. But the point was, we were all still together.
Thanks to all of you for the support, prayers and positive energy. We have felt so surrounded by love and optimism. We know that we are not alone in this journey.
Love and gratitude,
The Montgomery Three
Greetings from Vanderbilt Hospital. We are now on the other side of phase one of what we hope to be a four phase process with Joanna’s unwanted adventure. The last 24 hours have been very up and down, and I’ll say for me, have taught me (more) about unrealistic expectations. I think perhaps Joanna has also learned a bit about more that walking through this.
In a nutshell, here is a variation of story I was telling myself:
The doc walks in post surgery to give the family the update, and says “we’ve made a horrible mistake, Joanna didn’t have cancer, when we got in there, we discovered that there was just the one tumor, and everything else was benign. She’s recovering, and once she wakes up, she’s free to go. And, she doesn’t need chemo… have a great rest of your life.”
Unfortunately, that was not the message Dr. Crispins delivered.
Joanna has stage 3C Fallopian cancer. As I understand stages, 1-2 is very confined to a localized area, stage 3 is when the cancer has moved beyond a local area, and the A-C classification is based on the size of additional tumors. They found on large tumor (4cm) in her omentum, along with some extraneous smaller cells in the general area. All of this is the bad news.
The good news is that we caught this early (thanks to Maggie Grace), and there was much less visible cancer in and around the abdominal area than in many cases. The doctor removed nearly all of the visible cancer (leaving behind less than a half a cm trace – a process called debulking) and what remains will be dealt with in phase three. Along with all that, Joanna is young, strong (and I’ll add feisty has hell), and has a lot positive going on in her life today.
Phase two is simple. Recover from the surgery. Recovery in the physical sense will be fairly easy, assuming there are no complications. Crispins is a rockstar in the field (actually, I called her a badass, which clearly was a compliment she had never been paid before, based on her reaction to it…think I’m going to get cards printed with that in her title…) and the folks at Vandy have been unbelievable to us…including letting Maggie and I stay with Joanna during her recovery time in the hospital. Home is a great place to continue that recovery. We have built a sanctuary, and along with the physical space, both my family and Jo’s family will be on hand to help us as we need it.
Phase three is also straightforward. Chemotherapy, both intraperitoneal and intravenous. Agressive cancer calls for agressive chemo. This part will suck ass, what’s that line “sometimes the cure is worse than the disease”? In this case, I think I’d take chemo over dying. Jo will lose her hair (gonna shave my head bald in solidarity) and her particular reaction to the chemo remains to be seen.
Phase four; survival, remission, cure, get on with your life, wow – my priorities are way different (for both of us), motherhood, enjoying the moment, good friends, music, sunsets, life!
This is a marathon. Persistence and attitude is paramount. We will do everything in our power to beat this thing’s ass (fuck cancer is the new house mantra), and recognize that the footwork is our business, the results are God’s.
We are blown away by the offers of help, prayers, support, “I’ll do anything”, from our individual & joint circles – and beyond – total strangers… certainly not what we’d expected. Gratitude is not a good descriptor of how we feel at this outpouring. It’s truly amazing.
I’d expect that Joanna will be back on the keys from here forward. While I’d really prefer to not have this particular life experience, I have already learned from it, and look forward to the lessons yet to come.
(do me a favor, hug your wife – husband – mate; call your Mom and tell her you love her; do something nice just because you can… savor your relationships, they are all we have in the end.)
So, tomorrow is a big day in our little world. I’ll be going in for surgery to remove all of my reproductive organs, plus the three questionable places that turned up on CT scan. While she’s in there, my surgeon will do a thorough casing of the joint, taking some lymph nodes and sample tissue in order to determine just how much at home this cancer has made itself.
Of course, we’re hoping for the best news one can receive in these circumstances…. that the cancer is pretty well contained and that they were able to successfully remove it all. I’ll still have to undergo chemotherapy, but it’d be nice if that process was more precautionary than defensive.
It’s a weird feeling, knowing that at this time tomorrow I’ll have an incision from one end to the other and will be lighter a few organs. I’ll never be the same again. I looked at myself in the mirror for a long time today….looking at the smooth, unscarred skin of my torso. I’ve also spent some time trying to imagine myself with no hair, as I’ve been told that there’s no way I won’t lose it. I think of all of the times I’ve complained about my hair, or my stomach for that matter, and wish I had been more grateful for being healthy and disease-free. I do not think I’ll take my health for granted in the future. If you catch me doing it, I hope you’ll give me a good smack.
I’m trying not to get too schmaltzy or melodramatic on the cusp of this procedure. I’m trying to think of it as a positive thing, because it is. After all, I’m having a highly trained expert come in and extricate unwanted invaders from my body. Then we’re going to fumigate the place to make sure they never come back. That’s got to be a good thing, right? Certainly better than the alternative. I’m looking forward to waking up with these things out of me. To walking around and not thinking, “I have cancer inside me right now.”
I’m scared and nervous and emotional and anxious. But I’m also feeling surrounded with the love of my family, friends old and new, and even those of you I haven’t met but who have sent well wishes and messages of strength and encouragement. I feel like I am going into this surgery enveloped in love and light and good energy. For that, I am so very grateful.
See you on the other side…!