Cancer and the not-so-newborn

I haven’t found the time or energy or will to update the blog in a while and thought I’d revisit. BoomBoom turns one in just over a week and I’m not exactly sure where the year went. I’ve heard that the first year with a new baby is a challenge. Throw cancer into that mix and, well, it’s something else entirely. It’s been a fuck of a year, friends. But I would do it all again – pain and all – if it meant spending more time with my daughter.

The cancer update: Since my last post, I’ve gone through a liver resection, where over 50% of my liver was removed along with my gall bladder. They were unable to get all of the cancer because if they cut it all out, my liver wouldn’t have been strong enough to survive as chemo wasn’t exactly kind to it. So the “worst” tumour was left in (worst due to it’s location close to a major artery). Less than two weeks after liver surgery, I went back into the hospital for another (extremely painful) surgical procedure where they stuck a probe into my liver and “microwaved” the tumour to kill the cancer. We won’t know if it was effective for a few more weeks. Luckily, chemo really really worked for me and out of the tumours that were taken out during surgery, 95% of the cancer had already died.

I’ve been in and out of hospital quite a bit with complications. The longest non-cancer-related stay was a week (bowel obstruction). Lots of time away from my baby, but she was in good hands and reunions were all the more amazing. I wasn’t able to pick her up for a month post-surgery, but just started a few days ago and I love that I’m able to do it again. The recovery has been rough. I have a very high pain tolerance and was barely able to deal with the pain, but I got through it like I have everything else this year. Still very sore.

The baby update: BoomBoom is amazing. She started walking in her last few days of her 9th month. She’s now RUNNING everywhere. She’s gone from 3 words to about 15 in just over a month. She’s such a joy to have around and the best distraction I could ever ask for. All three of us are home as a family every day (Dev is on leave and I’m on long-term disability). Although our financial situation isn’t fabulous, I would take this time together over money any day. In fact, I’m dreading having to start work again if I am cancer-free… I don’t know what that’s going to look like but it scares the living daylights out of me. So I’m not going to think about it yet.

It’s funny. I think about the things that would be different had cancer not come into the mix. I was initially going to wait until BoomBoom was one year before letting her sleep over at my mum’s. Since June she’s there for up to 4-day stretches and I (gasp) really appreciate these times without her. I never wanted to have to leave her with people, but she is able to go off quite happily with practically everyone (obviously we choose the people wisely!) and I think this year of independence has done her wonders. She has never once cried during our goodbyes and very rarely shows that she misses us (I trust my mum to tell the truth and the only time she’s shown signs of distress is when she’s under the weather).  We have an extremely happy, extremely healthy kid. For that, I feel so blessed.

It’s funny, on Facebook today I saw a friend post a link to a fundraising page for a family whose newborn had just been diagnosed with a rare genetic disorder. Reading through the story, I realized how lucky I am to have a healthy child. I would 100 times over choose to be the one that is sick, not my baby. I can deal with the pain and the fear of dying. I wouldn’t want my child to have to deal with that. I think that would kill me.

Alrighty… baby has just woken up from her nap, so I must go, but I have to say, it feels great to be writing again. Hopefully I won’t be a stranger going forward!

 

A check in and update

Life here is forever changing. BoomBoom is 8 months old and talking up a storm (she says “hiiiiiii” to anyone and anything, says “mama” and “baby” and a whole bunch of babble). She’s cruising all over the place and looks like she may be an early walker. We have also somehow gone from waking every 2 hours through the night to sleeping 12 hours straight, without any work on our end. It just happened. She also surprises us many nights by reading/talking herself to sleep after we finish the bedtime routine. It’s a very nice change after many, many sleepless nights. Naps are still a challenge, but as we’re more rested, it’s harder to care about those.

She really makes everything better. Although I do think about the cancer every day, it’s not my first thought. She is. She makes me laugh so hard and is an incredible distraction.

The chemo is getting harder to endure, but honestly, it’s still manageable. If I list off my side-effects, I’ll sound like the end of a commercial for some prescription, but really, the only things that are tough to deal with are the neuropathy, sensitivity to cold, fatigue, mouth sores and a bit of nausea. I’ve been able to keep my weight up and though I’m the smallest I’ve been in years, I’m still at a healthy weight.

I’ve cut out sugar and flour (including corn flour, rice flour, quinoa flour, etc.). It was hard at first. Not that I’m a huge sweet tooth, but I always liked *something* sweet after dinner, and now, my “treat” is fruit. The sugar is oddly harder than flour because it is in EVERYTHING. I’m feeling healthy (besides, you know, my liver covered in cancer) and sometimes I feel like that’s a hard part: I feel great and then suddenly I realize that I could be dying of cancer.

But I’m not dying. Because that’s not an option.

Good news is, it looks like I’m a candidate for a liver resection, and so far, it’s happening in early December. I’ll do chemo through the end of October and then have November to rest and get my immunity back before surgery. I’m not super comfortable with the 6-weeks of doing nothing, as I’m scared the cancer will regrow, so I may ask my oncologist if I can do one more chemo session in November. We’ll see though.

Back when I was healthy, we had planned a trip to Hawaii in November. Devon has to go for the organization she performs with, and we were going to extend the trip. The surgery date means that she can still go to her convention, but that the baby and I won’t go. I’m really sad about that, but I can’t risk getting sick on the airplane ride… and we don’t really have the money for it now. I’m glad Dev can still go, though it will be a tough week on my own, after my last chemo. My mother has offered to move in, but from previous experience, that’s harder to deal with than me being alone with the baby.

I’m tired. I’m really, really tired. But I’m also really grateful for all the good that is in my life right now, and that’s what I focus on.

Forced Early Menopause

It appears as though I’m going through early menopause as a result of the chemotherapy treatments. I’m in my 5th chemo cycle (almost 2 months in) and I’ve had one “period” which was basically a day and a half of spurting dark brown clots – sorry for the visual.

It’s not that I think it’s a good idea to have another baby, not with everything going on with our family currently, it’s just that… I wanted us to make that decision, not my body. And there is something about being 33 years old and barren that is ridiculously depressing.

I always dreamed of having a sibling for BoomBoom, but it looks as though she’ll be our one and only. I suppose we could adopt, but that’s not something we ever really had in the cards. Even if I do survive this cancer, because of it being in its late stages, there is a really good chance it’ll reappear at some point unfortunately, and I don’t want to add another child into our family with that knowledge. I don’t want to leave Devon to be a single mom to two. Also, Devon was never and is not interested in carrying (plus she’s quite a bit older than I am).

I just don’t like that I have no control. I’ve had to give up so much control with whole situation – trusting other people to look after my baby overnight, etc. while I am getting treatment, when I really didn’t want to be away from her overnight until she was 12 months. I just want to retain some control or order or be able to make a damn decision of my own (with Devon, of course).

Although we were on the fence about having a second child (I wanted to, Dev was undecided), we now haven’t even talked about it but have come to a silent mutual understanding that our family is complete. I am so happy with our little family, I really am. And BoomBoom is everything we could ever wish for, and we are grateful. We should be grateful. I just don’t want to wake up in a few years missing that second unborn child the way I missed her before she was even conceived.

Regardless of the cancer prognosis, I don’t think my body could go through another pregnancy. I’ve been cut belly button to pubic bone and will be cute from left to right across my whole torso with the liver surgery, with a c-section and appendicitis to boot. My stomach will look like a war zone. But I think it’s the emotional scars more than anything that would make it impossible. I think the anxiety of being pregnant and always wondering if I’m riddled with cancer and passing it to the fetus would be too much.

A little bit of an update: It appears as though the chemo is working to shrink the tumours in my liver, albeit slowly. This means that I will most likely be a candidate for a liver resection. It’s looks as though they’ll take out about 75% of the liver. It’ll be touch-and-go and hopefully it can survive on such a little amount. Or shall I say, I’ll survive. We’re definitely not out of the woodworks yet (will we ever be?) but at least there’s some good news amongst the challenging stuff.

I don’t even know much about menopause, and they can’t confirm that’s what this is. It’s just a waiting game. I can tell I’m hormonal, but I still have a pretty healthy sex drive and no problems with lubrication since I’ve finished breast feeding (and 6 weeks later, I’m *still* producing milk!), so we’ll just have to see. The other side-effects are physically worse, but nothing as permanent and life-changing as this.

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Liver Love

We met with a liver surgeon a few weeks ago and went over my case. Basically, I have 6 tumours in 75% of my liver, each measuring up to 6cm in diameter. One of the tumours is dangerously close to a major artery and right now, is inoperable. Usually, when there are tumours in more than one lobe of the liver, they treat it palliatively just to deal with symptoms, but because of my age and the fact that I’m otherwise healthy, they are going to be more aggressive and give me a chance to fight it with chemo to see if the tumours will shrink enough for surgery to be a viable option.

The surgery itself is risky – the surgeon said it is akin to open-heart surgery – and obviously the road towards it will be tricky. They will first try embolization procedure, where they try to block or reduce the blood flow to cancer cells in the liver, hoping that the healthy cells will continue to grow and regenerate enough of my liver to deal with the 70%+ loss that will come with cutting out the tumours.

If the tumour that is causing the issue does not shrink, there is nothing they can do. They won’t do surgery and my cancer will be terminal. If that is the case, they’ve given me 2-3 years to live. If they CAN remove the tumours, I have a 25% chance of being cancer-free in 5 years. So right now, my BEST odds are 1 in 4.

I have started chemotherapy and will go for my second treatment on Thursday. The first one was okay, despite a near panic attack about an hour in. I’m in for 3 hours for an infusion and then am sent home with a “baby bottle” that continues to infuse over 3 days through an IV that is connected to the port in my chest.

babybottleThe trick is keeping BoomBoom disinterested in the IV line, considering ripping it out would not only be painful to me, but harmful to everyone around. The baby bottle is really big and clunky to carry around. A lot of people put them in their purse or on a belt. So far, I’ve just shoved it in a pocket of my cargo pants, but will have to come up with something else once summer is over.

So far the side-effects haven’t been devastating, but I know they’ll get worse. The day they removed the pump and the day after were the worst. Just felt like I got hit by a train, very fluish and my kidneys hurt. Sadly, and cruelly, it also hurt so much to cry (burned). I can’t use regular toothpaste anymore due to sensitivity to mint, it hurts to handle frozen products (which is a little hard considering we have a freezer full of donor milk for BoomBoom), I can’t drink anything colder than room temperature because my throat feels like ice. I am medicated out the yin-yang for nausea, so felt very little of that. All side-effects are manageable so far. The one that I’m dreading – and it may not happen, though there is a high possibility – is early menopause. Though I have no plans of bringing another baby into the world in our situation, there is something about being 33 and barren that hurts so much.

I have a scan in early September to see how the tumours are reacting to the chemo. If they have shrunk enough, liver surgery will probably be late November or December after recovering a bit from chemo. Then a 4-6 week recovery from surgery followed by another 3+ months of chemo. Essentially, we’re looking at a year of first-line treatment.

I breastfed until the morning of chemo and BoomBoom and I had a really emotional last feed. I should have weaned down slowly, but quite honestly I didn’t want to miss one opportunity to nurse, so the engorgement was horrible and painful. My milk has yet to dry up, so BoomBoom is having a REALLY hard transition as she can still smell me and doesn’t understand why everything had to change. Bedtimes have gone from relatively simple to 3-hour ordeals, as she was used to being nursed to sleep. There have been a lot of tears shared between the two of us in frustration. I just really hope that once my milk is gone (when does it dry up??), things will get easier.

I was so excited last week when she actually signed for milk for the first time, until I realized that she was signing for boob. I brought the bottle right over to her, signed back and put it in her mouth. She spat it out, climbed up me and pulled at my shirt and opened her mouth like she used to before nursing. It was heartbreaking. It is heartbreaking. I just wish she could understand that I’m doing this so that she stays healthy. I tell her that every day, hoping somehow she’ll take it in.

We are still all over the map emotionally. Devon took off in a car on Thursday, not knowing where she was going and went away until Sunday to do some processing on her own. We are distracted by our beautiful 6-month old who decided we didn’t have enough change going on this month, so started to crawl. Devon has taken over my parental leave so is off work until January 2014. I am on sick leave indefinitely, so it’s a full house around here. Our paperwork has all been messed up so neither of us have actually been paid in 6 weeks, but we have had some generous donations that have allowed us to pay our bills. We’re getting by. People are dropping off diapers and meals. The community behind us has been incredible.

Our baby is also incredible and I hope that one day I can blog about HER instead of all this cancer crap. She is such a joy and I absolutely love this stage. Her personality is shining through and that giggle… man, that giggle.

 

6%

That’s the survival rate for stage IV colon cancer at 5 years. That’s the cancer I have. Not even 10%; barely more than 5%. The numbers aren’t inspiring.

Now that we’ve dealt with the primary tumour (for now), it’s time to move on to the next problem. There are 6 tumours in my liver, each about 6 cm in diameter, spread across both lobes. Potentially inoperable, but we’ll know more next week.

It pisses me off. There is no history of colon cancer in my family. While I’m not a health nut, I’m certainly not unhealthy. I’m young. I eat well. I’m not overweight. I don’t drink. I don’t smoke (did for a few years, but quit years ago). These are the risk factors. I don’t meet any of the “criteria” to have this cancer in the first place.

Thank you to those who have joined the Facebook group I mentioned in my private post. It is a group where I do not feel comfortable being anything but positive, because really, how many of my friends want to know that I think I’m going to die?

Some days I really, really do think I’ll die. The numbers say I will. Some days I think I’ll beat the odds, and so far those days outnumber the former. Every time I look at my baby, I’m mixed with a strong desire to live so that I get to know her, as well as a terrifying feeling that I’m going to miss it all.

I will breastfeed her for the last time this week. I think I’m more sad about that than anything else right now. Because it’s not my choice. Because I’m not ready to give up that connection. Because I don’t know what I’m going to replace it with. Because I don’t even really know how to put her to sleep without it.

We’re trying to enjoy this week, as everything will change (again) next week. We meet with a liver surgeon on Tuesday and I start chemo on Wednesday.

I’m really scared of chemo. I know everyone responds differently and some people have very few side-effects and others are stuck in bed with many, so we’ll just have to wait and see. It’s also common for people to have few side-effects for the first one or two treatments and then fall apart a little bit after a few more.

I just want to be well enough that I can be a good mum. If my time really is limited, then it’s even more important. A good mum and a good wife. I hope I’m well enough to be those things.

P.S. If you have emailed for the password and I haven’t yet sent it, it’s just because my filing system sucks, so please write again.

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Not a good prognosis

Thank you for all your comments and thoughts and love. This last week and a half has been a whirlwind and things still haven’t set in.

The surgery went well, I guess, in that they were able to remove the tumour mass and reattach me without a need for a colostomy bag. I’m still in hospital recovering from the surgery and it was not a good time to find out that I’m treatment-resistant to pain medications. I woke up from the surgery and went through my morphine drip in 15 seconds and it did nothing. Eventually, they had to give me an epidural to block the pain (which he put in too low, so it wasn’t that much help).

I underestimated the time I would be knocked out so didn’t worry about pumping. I woke up almost 6 hours after I was put to sleep and hadn’t expressed anything for 8 hours. I stopped breathing a few times in recovery so they kept me there longer than usual and I was begging for a breast pump, or at least to be taken upstairs to be with my baby, but my words and discomfort went unnoticed for another 3 hours and by the time I really made a fuss, I was finally able to pump 12 hours after the last expression. I kept yelling at the (male) nurse that the last thing I needed on top of just having my colon operated on was to get mastitis. He didn’t seem to care and was incredibly rude.

Anyway, that was a bit of a side story, but it’s been an important part of this week. I’ve been pumping every three hours around the clock to keep my supply up so that I can feed my baby once I’m off the pain meds and before I start chemo. I fed her before the surgery and as she fell asleep on me, I promised myself that it would not be the last time I fed her. I refuse that. I will wean my baby girl on my own terms. We have been overwhelmed with milk donations from all across Canada, and it looks like my baby will be taken care of for a long time. My faith in humanity has been restored this week.

Prognosis-wise, things are not looking good you guys. I now have an oncologist (who is wonderful) and he’s incredibly blunt with realistic expectations of what I’m about to face. There are 6 lesions on my liver and unfortunately, they stretch out on both sides, so it’s not a quick nip and tuck removal. They will most likely never be able to remove the cancer. The big question is whether the cancer has spread anywhere other than my liver. I will be going for a PET scan on Thursday to find out.

He said there were “questionable-looking” lymph nodes on the CT scan and that if the cancer has spread there, my case will be treated as palliative. There was a lot of talk about being “comfortable” and being a mom “as long as you can be”. If this is the case, we’re looking at one to two years left of life.

If the cancer is contained to my liver, the prognosis is honestly not that much better. We’re looking at a 20-30% survival rate at 5 years. He talked about his “miracle” case where one of his patients is still alive after 7 years.

So, best case scenario, I will be leaving my baby before Kindergarten. Worst case scenario, I see her first birthday and she will never know who I was. Although I do know that there are many stories of people beating cancer and rising above expectations, for right now, I have to let this reality sit.

It took over three years to get my baby and I may not even have three years with her. I may not live to see my 7th wedding anniversary. I may be too sick to be a mom at all for whatever time I have left.

I will get to the fuck-it-I-can-do-this stage, I really will. But for now, I’m just so fucking sad that this is happening to my little family. My wife did not deserve this. My baby did not deserve this. I did not deserve this. The “why” of this whole situation is crushing me.

I will fight. I promise I won’t go down easy. But it’s going to be the hardest battle of my life. I feel like I’ve already fought an incredibly hard battle with my mental health and was feeling like life had just begun… and now it’s time to bring the armour out again.

I will be discharged tomorrow and our new normal will change. Devon will take over my maternity leave and will be off work until January and I will be on sick leave until I have to be. At the very least, it means we can spend precious time together. I start chemo probably mid-to-late July and then another new normal will come. There are changes in the air. I want to rewind to last Tuesday when everything was different. Where the only thing we were stressed about was having a brand new baby. Where life seemed like a give-in.

So, I have cancer

Apparently, the symptoms I’ve had over the last 5 months weren’t just from my c-section recovery.

On Wednesday morning, Devon took me to Emergency because I was having extreme abdominal pain. I’ve had this pain since the baby was born, but the intensity was more than I could bare. After a full day of tests, finally a colonoscopy was done and they found a tumour.

The next day, I had CT scans and a biopsy done and it was confirmed yesterday morning that the tumour is cancerous and aggressive and unfortunately, it has already spread to my liver. I am going into surgery in an hour or so to get the tumour removed and once I’ve recovered from that, will start chemo, etc. to fight the rest of the cancer.

I don’t even know what to say. Or think. Or feel.

All of us are in total shock and we’re just trying to get by minute by minute. Baby is able to visit me lots, but having not spent more than 3 hours away from her before this week, I’ve had to let her go into the world without me. I’m heartbroken and I miss my little girl. It’s obvious she misses me too.

I wasn’t able to breastfeed at first because of the narcotics, and it crushed me every time I was handed my baby and she batted at my hospital gown to try to get to my boob. She’s latch onto my chin, my shoulder and through the gown onto my nipple and it killed me that I couldn’t explain that Mummy can’t give her anything right now. I’m now able to breastfeed, but once the surgery starts, won’t be able to. I’ve been pumping like crazy and feeding baby when she’s here, but my supply is dwindling. I haven’t had food since Tuesday night. Some of my mama friends have collected and donated milk to get us through the week but I have no idea what we’ll do after that. Once I start chemo, I’ll no longer be able to feed at all. Every time she’s on the boob now, I’m petrified that it’ll be for the last time.

This diagnosis is a complete blow to all of us and we’re all scared. My wife has already lost both of her parents to cancer and all I could think about in the room with the doctor was that she can’t afford to lose anyone else.

I just got to meet my daughter 5 months ago (today!) and I’m not done with her yet. I’m not done with my marriage yet. Or my friends. Or my life. I will fight. But for today, I’m just getting by on the love from my wife and my family. Today, I am feeling quite low. However, I will pick my ass off and fight this – whatever that fucking means… I still don’t really know – and soon it will be a story that we tell our daughter 5, 10, 15 years from now about that crazy time when she was a baby and Mummy had cancer.

I can’t miss my daughter’s life. We went through so much to finally meet her. Little did I know I had cancer growing inside of me while she was growing inside of me. One has come out, and now it’s time to get the other one out.

I’ve kind of kept my heart out of this post, because I’m sick of crying for today and being factual and distant is a good coping mechanism for right now. We’ll know more when pathology of the tumour comes back.

Please keep our little family in your thoughts and prayers.

Fleeting moments

On Wednesday, I went to an event with a few other new moms, in someone’s house. At some point, I went to fill up my glass and realized my baby wasn’t in my arms, and I had absolutely no idea where she was. I had no recollection of putting her down. She was safe, of course, lying on a blanket in the corner of the room with a few other babies, but that’s not the point. When it was time to drive home, as I arrived in my parkade, I realized that I had absolutely no idea how I got there, or what route I took home.

This sleep deprivation stuff is scary sometimes. Devon took the night shift that night so I got a very decent night’s rest and felt so much better the following day. I need to start getting back in my body for things like driving. Being so tired that dirty diapers somehow go missing in the house is one thing. Driving without being present is another.

Thank you for your advice on the sleep thing. For now, we are doing what works so that we all survive a bit better than we have been. I’m nursing the baby to sleep, and that works for me right now. It’s frustrating sometimes, but so are 3-hour bedtimes. We’ll try something again in another few weeks.

Despite the 4-month sleep regression, I’m really enjoying this age. This kid is way too good for my self esteem. All I have to do is sing a scale and her reaction makes me feel like a mother fucking rock star. I also love that when Devon comes home from work, the baby actually gets excited about it, instead of eventually noticing that someone else is in the room. Must feel good.

I love co-bathing with her, as does Devon. It’s a great feeling to both be floating in the water and having her trust you so much. We bought an IKEA baby bath and have maybe used it four times. I’ve even nursed in the bath, which is just so easy and relaxing.

I love laughing at her when she rolls from back to tummy because she’s forgotten that she can roll from tummy to back so she lies there making the cutest “help me” noises.

I also love singing and talking and tickling and making faces with her. I love her laugh and her open mouth in anticipation of my fingers finally making it beneath her chin. I love how she closes her eyes every time I get ready to blow a raspberry on her tummy.

She now knows her name (which I realize I haven’t shared here, by choice) and turns towards us when we use it. She is taking in all of the world wherever we go and it’s like you can see her brain learning with every breath.

My back is still bad, but I’m using the Ergo carrier more, which I absolutely love. It’s so easy and intimate and a lot less annoying than trying to get a stroller into different places.

Although the days seem to creep by, the weeks are going so fast and I’m trying not to let it get to me. Even though I spend almost 24/7 with her, I feel like she’s growing up faster than I can handle. You hear it again and again when you’re pregnant that you need to enjoy the moments, because it goes so fast, and I never actually got that until now.