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.
Scratch that. I feel exhausted. But that’s mainly because I haven’t had a full night of sleep since June of 2012.
Or is it?
And so it goes in my head, like watching a game of ping pong, back and forth. I’m tired because I have a baby. Or I’m tired because of the lymphoma thing. Or some combination of the two?
But really, honestly, other than being so tired I sometimes forget how to speak English coherently, I feel okay. I am completely asymptomatic other than fatigue, which can be easily attributed to having a fifteen-month-old in the house. The other symptoms – night sweats, fever, itching, inexplicable weight loss, and weakness – haven’t been an issue for me. The oncologist agreed that my weight loss at the beginning of this year was a result of my lifestyle and diet change, and was reassured that my weight has been leveled out for months now.
I feel like I’m expected to go through a phase of wondering ‘why me?’ but it hasn’t happened yet. Rather than rail against the injustices of it all, I would prefer to take whatever action I can to heal myself. I’ve railed against the injustices in my life in the past, and while it sometimes made me feel better for a little while, it ultimately did very little to improve my life.
Sometimes things happen to people. Sometimes those things suck. Sometimes those people don’t deserve some of the things that happen to them, and that sucks too. It is possible that I’ve managed to survive a few crappy things already. But that’s the thing… I’m a survivor. I’ve been through crap before, and it worked out eventually, even though it felt like sometimes it couldn’t possibly get better. I know how to take care of myself when things are rough. But I’m better equipped, emotionally and with regards to having a support network and solid coping mechanisms, than someone else might be in my situation.
I feel like I have to say that I’m not claiming to be better than other people. That’s not what I mean. All I’m trying to say is that I can handle this, because I’ve handled worse. This is my situation, and my reality. It has nothing to do with anybody else, in that sense.
That also isn’t to say that I wont have some kind of breakdown at some point. And it’ll probably come at a completely unexpected time. So, friends, at some point I’ll need a shoulder to cry on, probably. Because I’m still human, after all.
On Thursday afternoon, Adam and I caught the seabus from our respective offices and headed back to the North Shore. This time, we were on our way to meet an oncologist. Once they know you’ve got cancer, they really try to move things forward quickly, and one of those things is getting you in the hands of the doctor who best knows what they’re talking about.
The doctor’s reputation preceded him; I had already heard from an ultrasound technician, a doctor who looked at my ultrasound at Lion’s Gate Hospital, and my own family doctor, about Dr. Sasha, his shoes, and his difficult-to-pronounce last name. I made it a personal challenge to learn how to pronounce his last name, and I hoped very much to capture a photo of his shoes. I asked him outright if I could — he was very obliging.
We arrived at our appointed time to meet with the Doctor and proceeded to wait. I took a picture of the ceiling in the waiting room. And we waited a bit more. It was maybe a half hour until the appointment started, but I can’t say that I was particularly upset about it. I was just coasting, in a holding pattern, thinking about nothing and everything and wondering why my phone battery couldn’t hold its charge properly anymore.
Once we were in his office, I impressed him with my ability to accurately pronounce his last name, we chatted about my family doctor (she is known for caring about her patients… this doesn’t surprise me) and moved on fairly quickly to the topic at hand… namely, what were we going to do about my cancer.
He brought up my pathology report on his extremely huge iMac, and I took a photo of it. He told us that, because the needle biopsy pathology report said this:
Lymph node, right supraclavicular – needle core biopsies – Highly suspicious for nodular sclerosing Hodgkin’s disease (Hodgkin’s lymphoma)
he would like to have the surgeon we saw last week perform an excisional biopsy to be absolutely 100% certain that it was Hodgkin’s. If we were dealing with a different kind of lymphoma, he would rather be sure what it was before planning the treatment, since there are different types of chemotherapy for different kinds of lymphomas. I’m obviously not opposed to being absolutely sure about what kind of lymphoma it is, so surgery is in my very near future. But it’s not major surgery, so that’s fine. I’ve handled much more intrusive surgeries before. My fear of such things is minimal.
We discussed the treatment for Hodgkin’s lymphoma, ABVD. The letters stand for the drugs used: Adriamycin (doxorubicin/hydroxydaunorubicin,) Bleomycin, Vinblastine, and Dacarbazine. (Note: Chemotherapy is not Radiation therapy. I didn’t really get that until I had a friend who underwent chemo. I honestly thought it was radiation, and was surprised to learn that it’s not.)
We talked about the cure rate for Hodgkin’s lymphoma – 80% – 90%, and if it doesn’t work the first time they keep assaulting it until it’s gone. This is where the ‘if you’re going to get cancer, it’s the one to get’ statement comes from.
I told him about my heart surgery back in 2001, so Dr. Sasha wants me to visit briefly with a cardiologist. He doesn’t sound at all concerned about it; he just wants to be thorough. I get the impression that this is just how he is. And so, I will see a cardiologist, who will ask me questions about whether the surgery worked and such. It did; I haven’t had heart problems since the catheter ablation. But since one of the drugs in ABVD can cause complications in the heart, he just wants to make sure.
He also said he will get the hospital to move my CT scan (the delayed one) to this week instead of next week, which is good. And he gave me a requisition to get a couple of more blood tests done that my doctor hadn’t already requested – HIV and Hep. So I’ll get those done sometime this week at my leisure.
Appointments and the Chemotherapy plan
So that’s one more appointment with a specialist (the cardiologist), one appointment for the biopsy (surgery, whee!), bloodwork, a CT scan, and then a follow-up appointment with Dr. Sasha again in about three weeks time when all the rest of the appointments are done. He wants me to see him at the chemo clinic in North Vancouver for that one, although we’ve come to the conclusion that for my actual chemo I will probably go to the Burnaby centre, because it’s closer to home.
He said that I should be starting chemo in about a month’s time. I guess in the meantime I’ll live it up and party like … wait, I have kids. Never mind.
What do I intend to do, however, is throw some sort of head-shaving party, because I have always wanted an excuse to shave my head. I will cut the hair off and donate it to a cancer wig place. I will go hat shopping, because I love hats. And I will have no hair. I’m (weirdly?) looking forward to it.
Otherwise, my chemo plan will emerge in three weeks, and start in about four weeks. Hello, November. You are going to be an interesting month.
Today I went for my second CT scan at Lion’s Gate Hospital. They had me sit in the waiting room for an hour, drinking two cups of water over that timespan. It reminded me a bit of getting an ultrasound to check on the progress of developing babies, except I was allowed to use the washroom if I needed to, thankfully.
So I sat around drinking water for an hour, changing into a lovely blue hospital gown, while reading Stiff: The Curious Lives of Human Cadavers. I was at least twenty minutes into the book (near the end of it, because I’ve been reading it for months and keep forgetting I’m reading it) before I realized how morbid that was. And then I was amused.
After the hour, the took me over and put an IV in so they could inject the dye, then put me into the giant donut CT scanner. They did one pass, then paused.
“So… when did you have that barium?”
I looked over at the woman asking and replied, “ummm… yesterday?” with a sinking feeling.
“Ah. Okay. Well we’re going to have to reschedule you for this, because it’s going to streak the results and we won’t get a good scan. It’ll probably take about a week.”
I was frustrated. I had asked my doctor last week if I should go ahead with the stomach x-ray, and she said yes. What I didn’t think of, and what she probably didn’t think to ask, was how close the two were booked together, and the fact that the barium would be a problem for the CT results.
At any rate, frustrated and annoyed, I was sent on my way. They will call to reschedule. And I got on a bus to make the long trek home. And when I see the oncologist on Thursday he won’t have the full picture yet, so everything gets delayed.
I’m doing my best to not be too annoyed by it, because that won’t make things go faster… so I’m going to play some Civilization V tonight as a distraction. World domination makes everything better.
I took Lyra to her friend’s birthday party on Sunday and stayed there for the duration. I knew the parents of Lyra’s friend well enough from playdates and chats at preschool where they met, and I had briefly met one of the other parents there at one of Lyra’s dance classes (she remembered me; I only vaguely remembered her). Otherwise, the parents were all strangers to me. I find it difficult to be in a room full of people I don’t know particularly well at the best of times; it was unsettling, to say the least, to be in a room full of people when I’m mostly distracted by thinking about cancer and upcoming potential treatments and side-effects, without talking about it somehow. To me it feels a bit like I’m a sheep in wolf’s clothing… like I’m pretending to be a perfectly normal human being, but there’s something wrong with me and I’m not telling them.
I’m guessing that this feeling will pass eventually. Or maybe it won’t, but eventually it will be obvious to groups of strangers that something isn’t right with me. I don’t know. By then I may not be as weird about it.
I’ve noticed that some of my friends and family cope with my having cancer differently than I do. Not that there’s anything wrong with that, since it’s not up to me how other people handle their own feelings. And if my general disposition bothers them somehow, I know I’m not responsible for their reactions to my coping mechanisms. I’m pretty sure that so far I haven’t felt guilty about this. I may have to keep it in mind, though.
Today I walked in the rain through Vancouver’s Chinatown to get a stomach x-ray. This was one of the first tests that my doctor booked me for, because my cough sounded to her like it might be caused by acid reflux. I asked her if I should go ahead and get the test done still, even though I’m doing all these other appointments and scans and ultrasounds, and she said I might as well. If I have an ulcer or something on top of everything else, it would be good knowing that in advance.
I love the rain. Every fall since we’ve lived in the Vancouver area, I’ve welcomed the beginning of the rainy season. I love the sound and the smell of it, and how the clouds make the sky so interesting, and the colours that come out when a sunshower peeks its way through. I’m happy to see the end of summer and the grey skies. It’s possible that I was meant to live here.
Into the future
Looking ahead, Adam and I can see that this is going to be a long, challenging winter; probably among our most challenging yet. Friends and family have been offering to help in any way they can, but for now we can’t see anything that we need. Unless someone wants to come and mop the floor, but really, that’s only not happening because our steam floor cleaner broke and we both don’t like mopping. Right now, though, I feel normal. Well, I feel fatigued, but I have a 15 month old who doesn’t sleep very well and a five year old who isn’t much better. Adam and I are both fatigued. I’m pretty sure that, for now, it’s not the cancer.
I have another CT scan tomorrow to look for more tumours. Once they know if/where I have any other growths, then they will work out my stage, and figure out what my treatment plan will be. Thursday is the Oncologist appointment. Hopefully my actual chemotherapy will start not long afterwards.
Chemotherapy and breastfeeding the baby dragon
The one thing I am least looking forward to in the upcoming chemotherapy I’ll be undergoing is weaning Pandra. That baby loves nursing. She’s practically gleeful every time she gets to cuddle down into my lap and drink her fill of milk. And I love the nursing relationship that I have with her. I was prepared to continue nursing for the next year, but that is no longer an option.
I don’t think it’s going to be an easy transition. No, I think think that this is going to be a very, very difficult transition — hard on Pandra, hard on me, and hard on Adam. There will be nights of not enough sleep. There will be tears, and yelling, and banshee-shrieking, and exhaustion for everyone. I may have to sleep somewhere else for a night or two — in the office, or at a friend’s house even — leaving Adam to handle the banshee girl (I must admit, the idea of sleeping out of the house where I might actually sleep the entire night through fills me with a bit of guilty joy).
And in the end it will all be fine, and my relationship with my baby won’t be damaged, and she’s big enough and eats well enough that she won’t be malnourished if we stop, and maybe we’ll all start to sleep the night through earlier than we did with Lyra. But oh, how I do not look forward to the process. Because how could anyone say no to this face?
I don’t know where to start. It’s not that this is the beginning, but it is the beginning of something. My doctor received preliminary results for last week’s needle biopsy, which confirmed that I have Hodgkin’s Lymphoma. My CT scan next week will show the extent of the cancer, and my treatment plan will come next.
There isn’t much point in removing the affected lymph node(s) at this point, so I’m most likely to undergo chemotherapy without surgery. I’ll know more after next Thursday when I talk directly to the oncologist, who I’m told has fantastic shoes.
But all of that is just more conjecture and waiting. Things have moved very quickly since all this began, and I’ve only had so much time to process everything that’s happened. Not enough, really, and I know I need to spend some time somewhere alone and just let myself think about things. I haven’t had a chance to do that yet.
Instead I’ve been keeping myself busy, both with everyday life (because that never stops) and with other things to distract me, like playing guitar or eating or talking to people online. Anything to keep from thinking too much.
Still, I don’t feel worried about any of this. I have cancer. But as my doctor and countless other people have told me (and I’ve said to others) today, if I’m going to get cancer, this is the one to get. I do feel off, though. Wrong. Strange. Disconnected a bit. Because I have cancer.
Tonight I’m tired and I feel the pressure of the last few weeks weighing down on me. It’s harder to breathe, and the air feels heavy around me, and I feel vaguely sad and helpless, like I did when I was in the midst of depression years ago. I recognize this feeling, and I remember it. I fought my way out of it once, and I’m certainly not about to fall back into it now.
Tomorrow I will walk down the street reminding myself to stand up straight, put my shoulders back, open up my chest and breathe. Because that’s what will get me back to myself. And then I’ll be okay again, making ridiculous cancer jokes to people who don’t expect to hear them, looking up ways to donate my hair, thinking about the awesome hat shopping I’m going to do.
My friends and family have been fantastically supportive through this. Even my work, which I’ve only been with for a short couple of months, has been absolutely great about giving me whatever time I need to get treatment and take care of myself. But there’s still nothing much to do, other than wait and see what’s next. I’m going to be fine. Sometimes I feel like they’re reassuring me of that so that they can reassure themselves too. They probably are.
And so I wait another week, and see what happens next. And because I don’t know how to visualize what I’m feeling, here is a picture I took years ago of cedar waxwings in the rain at Cleveland Dam. Somehow it just feels right.
I’m sitting in the hospital waiting room again. I’m starting to lose track of how many times I’ve come over to the North Shore for tests at Lion’s Gate or appointments with doctors.
I see all kinds of people here. Children with broken bones, elders confined to rolling beds, adults on crutches, and everything in between. I feel, and look, pretty healthy next to all of them. It’s hard… not because I think they’re looking at me, wondering what I’m doing here, but because I’m looking at them and thinking, most of the time, that I’m relieved that I’m me, and that I’m healthy. Or at least, relatively speaking.
I had lunch with a friend last Friday, and he asked me how I was doing. I replied, “I’m the healthiest I’ve ever been in my entire life… except for the cancer!” and we both burst into laughter for a few minutes. It’s true though. I am the healthiest I’ve ever been, thanks to running and thanks to cutting dairy entirely out of my diet. Hooray for lactose intolerance, I guess, even if I do miss cheese.
I’ve left the hospital now, and this ultrasound is complete. They wanted to check and make sure the random lump the doctor found in my left breast wasn’t related to the lymphoma on the right side of my neck. The doctor came by to look at the results and reassure me that everything was fine – the lump is just a random lump, and nothing to worry about. I really wasn’t all that worried about this one, since my own doctor seemed pretty certain that it wasn’t a big deal, but it is good to confirm it.
When I asked the ultrasound technician if I could take a picture of the pictures of my ultrasound, she said I wasn’t allowed to. And then she left the room to get the doctor, and left the screen up with pictures of my ultrasound, so obviously I did the right thing and didn’t take any pictures of it. Obviously.
Random snippets in transit
I used to take the seabus to and from work every day. It’s been a long time since those days, and it’s kind of nice to revisit this part of our transit system. The sky is varying degrees of grey, and it keeps threatening to rain but not following through today. With the leaves falling and the cooler temperatures, it really feels like autumn is beginning. Autumn makes me happy. It’s always been my favourite season.
Next up is a Thursday appointment with a surgeon, who will want to cut the lemon out of me. The big question is, will they keep me awake or put me under for it? I’m fine with either, but if it’s going to be complicated I’d rather be put under, obviously. I wish they’d let me take pictures of that, but it seems that doctors don’t usually believe me when I say I’m really, truly interested in seeing what’s happening.
My doctor told me to phone her tomorrow afternoon if I haven’t heard from her about my biopsy results. She’s the kind of doctor who will phone the hospital every day to bother them about things like that, which means the 7-10 business days they said it would take may well be shortened. She’d be happy to find out before I go see the surgeon on Thursday, I think. At least then we’d know for sure that it is a lymphoma, and not something else that we’re dealing with. I am under the impression that something else would be potentially harder to deal with, so I can understand her wanting to find out sooner rather than later.
Also, waiting is just annoying.
But for now that’s what I have to do. I’m waiting for biopsy results, I’m waiting to talk to the surgeon, and then I’ll be waiting for surgery, and I’m waiting to find out if I need to have chemotherapy. Even when things move quickly, there is a lot of waiting. I’m just going to try and keep busy in the meantime.
I had a cold. It was a particularly annoying sinus cold, and I was not pleased, but I was doing my best to just recover and move on with my life. Like you do when you have a cold, and two children, one of whom is about to start kindergarten, and a new job to figure out, and so on.
Wednesday, September 4th
Pandra had been feverish for a few days. That night, she woke up screaming and freaking out, and had a febrile seizure. Adam and I nearly decided to take her to emergency, but it passed quickly enough and she recovered. We decided that I would go with Adam and Lyra to Lyra’s checkup the next morning instead of going to work, bringing Pandra along just to make sure things were okay with her.
Thursday, September 5th
Lyra had a scheduled 5-year-old checkup before starting kindergarten, when she gets a booster and they check to make sure she’s still growing properly. She got her shots like a champion, she was in perfect health, and all was well. After she was done, we had the doctor check out Pan.
Pandra was still a bit feverish, but the doctor told us that the fever would break in a day or so, and she would break out in a rash, and then she would be fine; because she had fifth disease, one of those baby viruses that babies get, and get over. She told us to manage the fever with tylenol to make sure she didn’t have another febrile seizure and freak us out, and I picked up Pandra to pack our things up and head home.
And then I coughed.
The doctor, who was leaving the room, heard me and turned right back around.
“Oh, dear, let’s check you out! I don’t like the sound of that cough.”
I handed the baby to Adam, who went off to the waiting room with both girls while I got the once-over on my cold. She was concerned, she said, because the cough sounded like it had some acid reflux kind of thing going on. I agreed that yes, I had been experiencing some acid reflux, and it was annoying. And then the doctor noticed a lump near my clavicle, and I, offhandedly, mentioned that something felt kind of off on the right side, upper part of my lungs.
And so she sent me to get lung x-rays that day, because our doctor is very thorough. For that, I am grateful.
Sunday, September 8th
On Sunday afternoon, I get a phone call from the doctor — the lump she found showed up on the x-ray, and was something to be concerned about — enough so that she was booking me in for a CT scan as soon as possible. She told me that the Radiology department would call the next morning to set up an appointment, which they did.
Monday, September 9th
I hadn’t had a CT scan before. The giant donut machine was neat, and the process was quick and easy. It took less than an hour and they sent me on my way. Next was just to wait around for results.
Tuesday, September 10th
I hadn’t heard anything by midday, and wondered if I should call my doctor. I decided to wait. By the time I left work, I still hadn’t heard anything, and was starting to figure that maybe no news was good news. Maybe they hadn’t found anything of note. I went about my evening, making dinner and putting the kids to bed and making a lunch for Lyra. And then I noticed my phone had a voicemail.
“Oh, dear, I just wanted to call and let you know, we got the CT scan results back, and there’s something in there. It’s maybe… oh, how big is it… well I guess it’s about the size of a lemon or so, just sitting in your chest there. So can you come in tomorrow at, say, 10:30?”
Well yes. Yes I could certainly come in tomorrow at 10:30. And I didn’t particularly sleep at all that night. Instead, I lay awake thinking about cancer, and my daughters, and Adam, and how I would be really sad to have to stop breastfeeding Pandra earlier than planned, and worrying that I might not be able to sing again because of a growth gone wrong in my chest. These were the thoughts that kept me awake. Especially the one about possibly not being able to sing anymore. I guess that’s just the one that my mind decided to latch on to as the worst. possible. thing.
Wednesday, September 11th
Adam and I sent the girls to daycare and school and went to see the doctor, promptly at 10:30. We sat down in her office and she told us that, so far, there wasn’t much to tell, except that there was something there in my chest, and that they didn’t know exactly what it was yet, but the most likely thing was a lymphoma of some sort.
Lymphoma. Now that’s a big word. My doctor was avoiding the other big word that it’s closely related to — cancer. Now that’s an even bigger word. Hard to say, hard to write, hard to think about. But there it was, laid out plain in front of us. It might possibly be something else, but it probably wasn’t. We wouldn’t know until after a biopsy.
The thing was, this wasn’t a terrible end-of-the-world diagnosis. This was, in fact, the best possible scenario of bad scenarios. If you’re going to get cancer, it’s a pretty good one to get, because there are a lot of options out there for treatment. On top of that, Adam and I have a good friend who, in the past few years, went through diagnosis and treatment of lymphoma, and has recovered, so we were very familiar with the process. But we still didn’t know for certain if that was what I had.
That evening, a couple of good friends came over with wine, and we drank a lot of it. It was good.
Thursday, September 12th
My biopsy was scheduled for 11am the next day. Adam and I went to the hospital together from work. As we were walking up to the door, my phone started ringing. On the other end of the line was the Ultrasound department at the hospital, calling ten minutes before my appointment was scheduled, to tell me that they would have to reschedule me for the next day because of emergencies popping up and them not being able to fit me in.
We were mildly annoyed, but when I thought about it I decided that if someone else needed their time more than I did, they probably deserved it. They rescheduled me for the next morning, and I went back to work.
Friday, September 13th
I didn’t realize that it was Friday the 13th. I’m not superstitious, so it wasn’t really important to me, but people kept pointing it out anyway. Adam and I returned to the hospital that morning, where they did not reschedule me a second time, thankfully. I was sent off to a waiting room and changed into a blue gown. And I waited, and was bored. And I started a tumblr and called it Unfamiliar Ceiling.
A nurse finally brought me into a small room with an ultrasound machine, and a radiologist doctor followed soon after. I was having a needle biopsy, which meant that they would freeze the area around the lump, then insert a needle into the lump to get a few samples of it. I asked how it worked, of course, because I like to know these things. The doctor explained it as a little tray that sits on the end of the needle, and when he pushes a button it clicks and then closes, cutting off a piece of tissue and shooting it back up the needle in the tray.
I like to know exactly what’s about to happen because it helps me come to terms with it and not feel panicked or nervous. Like any other reasonably normal person, I don’t actually like needles. What I can do, however, is feel the tension coming into me physically and emotionally, recognize it for what it is (instinctual fear) and talk myself down from that until I reach a place where I don’t feel afraid or nervous. I don’t really feel much of anything but detached, at that point. My ability to dissociate is well-developed, and it has done me well in challenging health situations like heart surgery and having a c-section. It’s how I handle pain and fear. I’m very good having a clear head in a crisis.
He then made me turn my head to the wall so he could get a good angle on the lump, which is near the base of my neck. That meant I couldn’t watch, though, which was mildly disappointing. I asked him if I could see a picture of the ultrasound when he was done; he said he would show me one. I followed up by asking if I could take a picture of the ultrasound he showed me, to which he replied “I guess… if you want to?” Of course I wanted to. That’s what I do.
I finished the biopsy and ultrasound and went on my way back to work for the afternoon. Exhaustion from the week had started to creep up on me, though, and my brain was getting just a little bit squirrelly. By 3pm I was practically falling asleep at my desk. When I got home, I was beyond tired and I knew it. We ordered takeout for dinner because I was just done. Once the kids were in bed, Adam forced me to lie down on the couch and go to sleep. Eventually I moved into the bedroom, where I slept more. He got up the next morning with the girls, and I continued sleeping. By the end of it, I had slept for twelve hours, and still felt like I could sleep a bit more.
The weekend continued as a normal weekend does… laundry, and grocery shopping, getting outside for a hike, and doing things with our daughters. At times I would be distracted and nothing thinking about anything, then suddenly remember ‘Oh, right, probable lymphoma,’ and have a strange double-take kind of feeling. It was sobering and distracting, and then it was gone and I was carrying on with life, because that is what I do.
Sunday, September 15th
And now it’s Sunday night. I have another ultrasound on Tuesday, because they found a lump in my left breast, but they don’t think it’s related. It may just be something to do with breastfeeding. However, they want to check it out and make sure, because lymphoma. And then on Thursday I have another appointment with a surgeon, probably to schedule an excisional biopsy to take the entire lemon-sized thing out at once. I don’t know if that’s all it will take, or if I’ll need to do chemo as well. I don’t really know much of anything yet.
Since I don’t know what’s to come, I’m not going to worry too much. Worrying doesn’t accomplish anything, and really it can only make everything harder, so I’m carrying on with life, I’m sharing what’s happening since that’s how I deal with things best, and I’m doing my best to not be afraid, without being too dissociated. That’s where humour comes into it. I will make jokes about this situation, because if I don’t make jokes then I won’t let myself feel anything at all. And that would be worse.