Today was an unfortunate roller coaster of appointments being cancelled, chemo being rescheduled, and then cancelled appointments being re-instated, but things are now sorted out.
I met with the oncologist to go over biopsy and PET scan results and discuss any symptoms I have (which is none). I was told that my second neck biopsy (the surgery one last week that was not much fun) was ultimately unnecessary, because they sent the first biopsy to BC Cancer for full testing and they came back with a 100% positive result for Hodgkins Lymphoma. Isn’t that nice?
We have established that I have Classic Hodgkins Lymphoma, stage 2A, of the Nodular Sclerosis type. Here’s what that means:
I’ve got three tumours (found by the PET scan) all on the upper half of my body – so only one side of my diaphragm. That means I’m stage 2. They are located on my neck, behind my trachea (that one is the lemon), and in my left armpit — all three on lymph node areas, not on organs. These are good things.
I have no B symptoms — things like unexplained weight loss, severe night sweats, and an unexplained high temperature. They asked me for details about my recent weight loss, but agreed that it seems more likely related to running three times a week and entirely changing my diet while nursing a baby, than to the lymphoma. Also, the weight loss stopped in the summer, and I’ve been stable since then. My lack of symptoms is what makes me A instead of B. That’s another good thing.
My bone marrow biopsy was negative, so there is no trace of lymphoma in my bone marrow. My bloodwork all came back clear, so I don’t have any additional health problems that could complicate treatment.
Later, I saw the cardiologist, who had me hooked up to a holter monitor early this week. He is reassured that my heart is fine, my heart surgery ten years ago fixed the arrhythmia issue, and the Adriamycin (a chemo drug that can hurt your heart) should not be a problem. He was a very pleasant and very tall fellow.
My chemotherapy was due to start tomorrow, then got pushed to next week since they thought they still needed to see my biopsy results. I could have moved it back to tomorrow because they already had the earlier biopsy results, but I asked to keep it on Monday instead, so I can hang out with the girls for Halloween. This is not a problem. A few more days will not cause any issues.
I’ll be doing a chemotherapy called ABVD, which is named after the four drugs they’ll be giving me.
A = Doxorubicin Hydrochloride (Adriamycin)
B = Bleomycin
V = Vinblastine Sulfate
D = Dacarbazine
They have fun side effects like making your hair fall out, making your taste buds forget how to taste, sometimes giving you mouth sores, and making you nauseous. And so I also have a collection of anti-nausea drugs called antiemetics. Somewhere in there is a drug that may cause hiccups, too. Life is going to get interesting for the next while.
Because I’m stage 2A with no B symptoms and in good health, I’m going to have four cycles of chemotherapy — which means about four months of treatment. It is the lower range of time for chemo. That’s not so bad. I can handle four months. I could have handled six months, too, but four is better.
And now I have one last weekend to do fun things like Halloween with my family, and eating super tasty foods, before I start chemo. I like them, and they will help me get through all of this.
I’ve been expecting it for a while, but it still hit me pretty hard. Probably a combination of knowing that chemotherapy will start in a few days and feeling like this week has gone to hell with appointments and visits to doctors offices and the culmination of two months of upheaval from any kind of regular routine.
I went to the cardiologist’s office to get set up with a holter monitor, and for some reason when he told me that I had to bring the recorder back the following day, something in my head snapped. It wasn’t part of my plan for the week. It was taking away from the only vaguely normal day I had planned this week, and making me cut my workday up into slivers.
I nodded and said I’d bring it back, and internally I could feel myself rebelling against the idea of coming all the way back to the North Shore mid-morning because it wasn’t part of my plan. I’m flexible. These things don’t bug me. But this time it did.
So I went to work, newly outfitted with a bunch of stickies on my chest connected to wires going into a little electronic recording device, and I felt annoyed, off, frustrated. I had trouble focusing on anything, and I felt like this one little thing had pushed me off the edge into an out-of-control spiral. I did not like, not one bit.
In an attempt to regain control, or at least feel like I was, I looked up salons in Vancouver that might take my hair and donate it to a cancer wig place. I found one across the street from my office, so rather than sit at my desk thinking about not knowing what was coming next, I went across and talked to them about getting my hair chopped off before chemo.
It was quiet there; they chopped it off for donation, then gave me a nice short cut. I felt less overwhelmed, but the undercurrent was there. I was scared.
What’s to be scared of, really?
I’m still scared, but I’m not scared of everything I’ve learned about what to expect from chemotherapy. What scares me isn’t what I know. It’s what I don’t know, and what I can’t begin to know until I’ve been through it. I’m scared of not knowing how chemo will feel, and how I’ll react to the drugs.
I was scared of the biopsies in the same way; not knowing how it would feel made the lead-up to all of them harder. Once I was going through it, I could put myself in the right frame of mind to just deal with it. But I’m not there yet with the chemo. Instead, I’m as close to overwhelmed as I’ve been through this process. And of course it’s all happening while I’m recording my heart rate on a holter.
Adam told me, lying in bed tonight when I couldn’t sleep, that I can’t put on a brave face all the time. He’s right, but then again, that’s what I do to get through it. I’m just remarkably good at faking it till I believe it’s true, at which point it becomes true. I assume that’s what everyone does; maybe I’m wrong though.
I asked someone else to come to work tomorrow, pick up the holter test, and bring it back to the doctor’s office on the North Shore, so I can stay at work and have one last nearly sane day before this week goes sideways. It’s these little random things that help keep me stable. People are good, and everyone seems to want to help in some way. Even wanting to help — it helps.
And maybe now that I’ve written this all down, my brain will let me sleep.
It was rather pleasant, really. I walked into the PET scan department where they led me into a quiet room with a comfy chair (nooo! Not the comfy chair!) and then poked me with the soft pillows (wait, I mean IV). The friendly girl gave me a list of cds to choose from and told me that I would have to sit back and relax for 45 minutes — no reading my book, no playing with a phone, and no using muscles that would want to eat the tracer. Some people, she told me, nap in the reclining chair while they wait.
I chose an appropriately mellow album by Delirium, and she wheeled a tray in containing the radioactive sugar tracer to be injected into me. The tracer takes a while to circulate through the body, and gets eaten up by the active tumours. After injecting it into me and making me effectively RADIOACTIVE WOMAN, she left me in the room with dimmed lights and Delirium playing.
So I napped. It was pleasant.
After the 45 minute wait time, she took me down the hall to the PET scanner room. There, I had to lie down on the fancy table with my head pillowed on both sides and another pillow between my knees. They told me to lie still and breathe normally, and that the scan would take 15-20 minutes. I put my arms up over my head, closed my eyes, and I may have napped again while the table moved me through the scanner in stages.
Overall, I felt nothing from the tracer, the IV was one of the best I’ve had put in in recent days, and I got to nap. And then I couldn’t go home until after the kids were in bed, because I was radioactive enough that they recommend you avoid small children for six hours after the scan.
PET scan is best scan. Still no superpowers to report, however.
Excisional Biopsies are not great for naps
Today I had an excisional biopsy on the lymph node/tumour near my clavicle — the one that you can see and touch. It’s still frozen, but I know it’s going to hurt when it isn’t anymore.
It went a little bit like this:
I’ve changed into a gown and I’m lying on an operating table in the minor surgeries unit at Burnaby General Hospital. Bored, staring at the ceiling, watching the seconds tick by on the wall clock. I have a mild headache, probably because I haven’t had any coffee yet.
The surgeon arrives and sets up. I lie with my neck exposed, looking to my left, while he preps the area and gets his tools out.
My neck and clavicle area are frozen, and I’m still looking to the left. The surgeon and I discuss random things like children, and mountain biking, and other easy subjects, while he draws lines on my neck and waits for the freezing to take. I ask him if I can see the piece he takes out of me. He says yes.
I can’t actually see the clock anymore, and I’m starting to lose track of time. He’s made some kind of incision, not that I can see it. He’s also using an electro-cautery surgical tool. From his description, I envision a tiny spinning power-saw type of blade that also happens to use electricity to burn things. This is to prevent bleeding, of course. The smoke smells weird. It reminds me of the dentist.
Some time later
I’m still lying there. He’s alternating between various cutting tools, and possibly some clamps to hold things in place. At one point he uses the cauterizing tool and I feel the muscles in my shoulder twitch. It is not entirely pleasant, although it doesn’t hurt really. Just a little internal electrical jolt. He adds some more freezing. I notice that my hands are balled into tense fists; I force myself to slowly relax them, focusing on individual muscles and telling them to drain their energy into the ground.
I’ve completely lost track of time. The surgeon and I still chat about things in between his efforts to remove my lymph node. I ask him how big the growth is; he tells me it’s about the size of an acorn. The lemon, apparently, is the one in my chest closer to my esophagus. It’s good to know these things.
More time passes
The surgeon has been struggling with my tumour — it doesn’t want to come free. He tells me that it’s deeper than it seemed on the surface and doesn’t want to let go of me. I chuckle and think to myself ‘aww, my tumours love me so much they don’t want to leave.’
More than an hour later
He spends more time digging and cutting and putting pressure on various parts of my clavicle and neck, still fighting with the tumour, trying his best to remove the whole thing. It is rather unpleasant, and I feel my hands balling up into fists on more than one occasion while he scrapes and digs and pushes and pulls on tissue. Over and over I tell my muscles to relax, force my hands to loosen their grip. I haven’t moved my neck in a very long time, and I can feel how stiff it’s getting. The small talk continues.
Time? What is that?
I know he’s been poking, digging, and cutting around in there for a long time now. I don’t know how long. I’m fairly uncomfortable, and I can feel twinges of the future pain I will have when the freezing wears off. The surgeon warns me that I might be feeling what he’s doing now, because he’s pretty deep into it; he’s right. I can feel it, and it’s a little painful. I take my brain to other places; the Laurentians in fall, the access road up to Pseudo-Tsuga in Squamish, the peak of Mt. Seymour. I take my mind to high up places with lovely views and don’t feel whatever he’s working on for a while. I’m ready, though, for him to be finished.
Two hours? I don’t even know…
He decides, after finally getting underneath the node on one corner, but seeing it start to tear and losing grip on it, that he just isn’t going to be able to remove the whole thing. Instead, he decides to just cut a piece of it off for the lab to process. This proves challenging as well — the tissue is rather dense and hard to cut through, it seems.
And then he gets his sample and closes me back up with stitches, telling me that I had very little bleeding, but I’m going to bruise. I would have assumed as much, considering how much pressure he was putting on me. He shows me the piece he fought so hard for; it is whitish and lumpy, and smaller than a fingernail bed, but it is enough for them to figure out exactly which lymphoma I have.
I sit up and feel how stiff my neck is, then walk out of the operating room to find Adam waiting for me. We leave the hospital and get lattes at Caffe Artigiano, then make our way home via the pharmacy for my prescription.
3:50 pm Sitting at home, still waiting for the freezing to come out. Still have that headache, more from tension than anything else. Two hours of minor surgery is not the most fun I’ve had this month. I’d rather get irradiated and have another PET scan.
But now it’s done. The biopsy wasn’t to remove the tumour; that’s what chemotherapy is for. So his inability to get that tenacious thing out of me is not a failure. I am just glad to be done with it.
Here’s my recommendation: don’t have biopsies for fun. They aren’t fun.
I spoke to my oncologist this morning before the biopsy. All of the scans and tests are coming together to move me into chemotherapy. I will be starting chemo late next week, it looks like. It’s time to move onto the next step. I both am, and am not looking forward to it.
I feel guilty for not being at my best, for having appointments, for feeling vaguely crappy with no outwardly discernible reason. I feel guilty for taking time to take care of myself, either physically or emotionally. I don’t like feeling guilty. I’m trying not to.
I have this annoying feeling of pressure on the right side of my esophagus. It is merely annoying at this point. I feel it more some days than others. It affects my singing voice more than anything else. If the tumor keeps growing, I imagine it could become more problematic. But that’s what chemotherapy is for.
I feel like I’m walking around in stealth-cancer mode all the time. On the train, shopping for a pumpkin, in restaurants, on the street — I feel as though I’m somehow lying to all these random strangers. Not that I think they need to know, but that I might be hiding something from them. And it makes me wonder who else is walking around with their own stealth-cancer…
I also feel that because I’ve got this comparatively easy-to-cure cancer, I don’t really have much reason or excuse to complain about things. Not that I’ve really felt much like complaining, but on the occasions when I have I start to feel like I don’t have a bad enough cancer to complain about it. Yeah, that’s kind of sad actually, now that I think about it. I should probably let myself complain once in a while.
Sometimes I seem to act a bit disconnected and distant from reality, and from people close to me. I don’t always notice it, and when I do I try to bring myself back, but it can be hard. I’m easily distracted. From what I’ve read in my chemo literature, this may happen more often once I’m in active treatment. It’s even got a name: chemo-brain. Yay.
Fatigue comes and goes. I still can’t always tell if it’s parental fatigue or cancer fatigue. It might be both.
There are days when I feel generally down. Those are the days I’m most disconnected, and the days where I’m pretty sure if a friend gave me a hug it’s possible I might start crying on their shoulder. Not because of anything specific… just the pressure of dealing with all of this stuff. It builds up over time, and then I can feel the depression I used to handle daily trying to creep its way back into my life. This can last a day, or two, or three, but eventually I remember that I know how to fight that feeling; I have the emotional tools, and I spent years honing them.
Maybe it’s a good thing I had those years of depression and therapy and building support networks and figuring out how to use them. I’m equipped now to take care of myself, and to know how to ask for the things that I need to help me off the edge of that ravine. Not that I think it was good I was depressed; more that I feel like since I survived that, and all the things combined that put me there, then cancer treatment is going to be easy and straightforward — because it’s real, it’s tangible, it can’t be waved away as just being stupid emotions.
But I suppose that’s all I’ve noticed so far. I expect the side-effects of chemotherapy to be interesting.
After meeting with the fancy-shoed oncologist, I believed that things would start moving forward rapidly. I was, unfortunately, mistaken. After a week and a half of radio silence from his office after him giving me an exact list and timeline of events to happen within two weeks, I finally called to remind him I existed.
His receptionist said she would let him know.
So I called again the next day. She said he hadn’t actually sent my referrals over to the appropriate places yet, but that she would remind him. I was not terribly impressed by this news, so I had Adam call my ever-diligent and amazing family doctor, because I was tired and didn’t really know what I wanted to say.
She was also not terribly impressed, and told Adam that I should call her with my friend Steve‘s Oncologist’s name and number in Burnaby. I did just that, and things started moving again from that moment.
Within a day, I had an appointment in Burnaby with the new Oncologist scheduled — for 7:30am on a Monday morning. That was today.
Adam and I drove out to Burnaby to see her, and swore to each other that we would never, ever decide to take Highway 1 at 7am on a weekday again. Gridlock at 7am? And people deal with that on a daily basis? Horrifying.
We arrived a few minutes after 7:30, found our way to the Cancer Centre where I was told she would be, and looked around. It was dark and deserted, and the sign on the door said it wasn’t open until 9:30am. So we walked back to the admissions and information desk of the hospital, where they had no idea what we were talking about.
I finally received a phone call from the new Oncologist, saying she had arrived and was wondering where we were. She was waiting for us in the dark, abandoned cancer centre at that point, so we headed back there.
Meeting the new Oncologist
Within about two minutes I felt pretty comfortable with this new doctor. She was efficient and willing to tell me anything I asked. She gave us more information than any doctor had previously. She phoned various departments and doctors within her network and had me scheduled for a bone marrow biopsy later that morning, a PET scan within two weeks, and the excisional biopsy that the other doctor had told me I would have had done by now. And she said that everything should come together in two weeks time, at which point my chemo would start.
Basically, she got more done in an hour and a half than the other doctor did in two and a half weeks.
She also gave us a lot more information up front about things like my staging. It was good to know, for instance, that I have two tumors; the one on my lymph node next to my neck, and one in my chest behind the trachea. And, surprise! The second one that no one has mentioned to us beyond in passing is, in fact, the bigger of the two.
This is the kind of information I want to hear. I want to know the truth, without dressing it up in pretty clothing and fancy shoes.
Watch out for those UBMB’s…
Did I mention that she scheduled me for a bone marrow biopsy that same day? Keep an eye out for those Unexpected Bone Marrow Biopsies, folks — you never know when one is going to sneak up on you.
Let me tell you a little about bone marrow biopsy. First of all, they freeze you, so it doesn’t exactly hurt. Second, you can’t really see what they’re doing because they take the bone marrow out of your hipbone, just above your behind, on your back. Third, it feels, rather a lot, like they’re twisting a rudimentary corkscrew into your bone in order to get to that lovely marrow hidden deep inside.
It is, all told, an uncomfortable experience.
The friendly pathologist who performed my bone marrow biopsy was quite nice. She commented that I have nice, strong bones, and was glad I was such a good patient. I can’t imagine lying there screaming and crying over it, though. I would notice myself getting a bit tense, and slowly relax all of my muscles o
ne at a time. I probably did that three or four times, I guess.
It was over quickly enough, and I asked to see my bone marrow slide. She didn’t end up taking a core sample — she said she didn’t think I needed it done. I leave that decision to her. Hopefully I won’t have to experience the fun that is a bone marrow biopsy again any time soon.
Bone marrow biopsies: not recommended for a good time.
Afterwards, I had a cup of tea to relax, and hopped on the skytrain at Brentwood (aka the prettiest of the skytrain stations) and spent the rest of the day at work, trying my best to not be too spacey while my butt slowly lost the freeze.
This week things are reasonably open. Next week I have a PET scan (that should be very interesting) and the excisional biopsy. I’ve also already received my prescription for the anti-nausea drugs I’ll have to take when chemo starts. And then we’ll see what happens next.
I’m just glad that things are moving again. I can feel the well-oiled machine that is the Burnaby Cancer Centre and its team, working together to help me get better. I am nothing if not a fan of efficiency.
I’ve been going about my routines as though everything is perfectly normal. For the most part, it has been. I had thought that, by now, I would have received various calls I’ve been waiting for: from the surgeon to book my next biopsy, or from the CT department to move my scan up a bit, and so on. But I haven’t heard anything. This entire week has been radio silence from the health care side of things, and I’ve been going to work, coming home, making dinner, picking up the kids from daycare, doing laundry… all those perfectly normal, routine things that make up everyday life.
The difference from actual normalcy and this holding pattern I’ve been in shows itself when, every so often, the word cancer floats to the top of my consciousness. “Oh, hey, yeah, I have cancer,” and my stomach tightens a bit and I feel my heart beating a bit faster and I have to pause a moment to acknowledge the thought, give it a place in my mind, and continue doing whatever it is that I’m doing.
When I think about it, the sentence “I have cancer” never feels quite accurate. It’s not like having a cold. I didn’t catch this thing by having someone sneeze on me, or getting a bad blood transfusion. It’s my own cells trying to put in extra hours when they really should just relax. “I have cancer” doesn’t cover that. But I haven’t yet figured out a phrase to reflect the reality better that doesn’t sound vague and inaccurate.
So I’m carrying on with my life through occasional hiccups that make me stop in my tracks for a few seconds. I have my CT scan on Tuesday, since it never got moved closer. I’ll have surgery sometime soon. Chemo will start in November sometime I think. Nothing much has changed.
Pandra has been put through a lot in the last week. She’s handling it all really well, though. My kids are resilient, and for that I am thankful.
I started to cut back on nursing her late last week, on the advice of the oncologist. It only makes sense to wean her now, rather than right before chemo starts, so that it’s not an issue for her. Really doing anything to make life less complicated when that happens is a good plan.
But weaning has been hard for me this time around. Lyra nursed until she was almost two and a half years old, and then I flew away to Las Vegas for an extended weekend. When I got back and she asked to nurse, I told her that the milk was all gone, and she said “oh,” and never asked for it again. We were both pretty much ready to stop at that point.
I expected to nurse Pandra for longer than this. It’s been a bit of a blow to me that I’m not, even though I know there is no harm in stopping now. I’m not nursing her at this point because I have to; I’m doing it because I want to, and because she wants to.
Today was the first day I haven’t nursed her at all. Yesterday, she nursed once in the morning. The day before, she nursed once in the evening after work. On the weekend it was maybe twice each day. She hasn’t given up asking yet, although she’s stopped having epic meltdowns when I tell her no. Small steps.
The worst for me is when she walks around the house, making me follow her from room to room, assertively pointing in each room at a chair or bed where, in the past, we have nursed. She’s so disappointed when I say no that I want desperately to give in, just this once maybe. But I don’t. And she doesn’t nurse at all overnight any more. But there’s more to that side of things…
Sharing bedrooms is the best!
I had given up nursing Pan at night two months ago, but when she got sick, I went back to it. It helped her sleep. When she was better, though, she wanted to nurse all night still, so I had to cut that back. She was very rageful about this, and we didn’t sleep for a week or two.
Last weekend I decided, on a whim, to move her bed into Lyra’s room as an experiment. Adam thought I was crazy and that it could never work. I mostly agreed with him, but I needed to try anyway. So that night, we put the girls to bed at the same time, in the same room. Bedtime was mildly chaotic, but we managed.
Lyra was fantastic about having Pandra in her room. When I told her that Pan might cry for a bit, Lyra said “Oh, that’s okay mom. I’ll tell her it’s okay.” When I mentioned that Pan might wake up in the middle of the night and yell, Lyra replied, “Don’t worry, I’ll just go back to sleep when she’s done.” All this from a girl who looks for any excuse to stay awake all night.
And then, when Pandra did wake up in the middle of the first night, Lyra didn’t. When she woke up the second time it was closer to 5:30 in the morning, so I took Pan into the living room to cuddle, and Lyra followed. Pan fell back asleep in her bed, and Lyra and I went to sleep in the office. We all slept until 9am.
Adam and I were amazed that Pan had only woken up twice. And that Lyra hadn’t been upset by any of it, and was perfectly happy to share her room with Pan again the next night.
And that’s how it’s been since Saturday night. It’s Wednesday night now, and last night was the first night ever that Pandra has slept a whole night through. We realize that it might be a fluke, and she will probably still have wake-ups, but the fact that it happened at all has been a shock to our systems. It took Lyra until she was three and a half years old to sleep through the night.
Not that we felt rested or caught up on sleep yet. That will take a bit longer. But I’m so glad that my children adapt well to change, and that I pushed through the challenge of having Pandra weaned and sleeping well and in a separate room from me before chemotherapy starts. I don’t know how I’m going to react to it yet; but I do know that I will be better off with my own space.
And to top it all off, Lyra, who has so easily taken to sharing her sleeping space, lost her first baby tooth yesterday. She’s not a baby anymore. She hasn’t been a baby in a very long time, but now she’s losing teeth and going to school. Everything, absolutely everything, feels like it’s changed in the last couple of months. I don’t feel bad about this; I like change. But it’s been a challenge learning how to handle it all.
My girls are both lovely, and adaptable, and clever. They’ll have no problem dealing with whatever changes get thrown at us in the near future; of this I am confident. We’ll all be okay.