My first week post-chemotherapy is winding down. I have reached a level of tiredness that goes beyond what I would have ever called ‘tired’ before. It’s almost like I can feel myself physically breaking down internally, and there is nothing much I can do about it but ride out the wave until I reach the shore.
But let’s back up a bit.
Monday was chemo day. I already told you all about that. Tuesday was my first recovery-from-chemo day, wherein I stayed home and relaxed. I went out for an hour with Adam to run errands and felt reasonably well, all things considered. I declared Tuesday a resounding success in handling chemotherapy, and decided to go in to work the next day.
Wednesday morning, I woke up on time and took my meds, and then made it out the door in time for my train. I was in a good mood; going to work made me feel like things were still somewhat normal, even if they’re not. The anti-nausea medicines did a great job of managing things. The first weird side-effect I noticed was that, after riding the commuter train in to work, my ears got blocked up and wouldn’t equalize. It lasted for about an hour and then went away.
Taste had already started to go away by this point, but it wasn’t completely gone. I went for a meat-fest of lunch with my co-workers at a Southwestern BBQ restaurant, and did my best to increase my protein and iron intake. It was good. The after lunch food coma was partially due to the amount of meat ingested, but by 3:00 p.m. Internally, my mind was muddled and my brain felt sluggish. I was feeling drawn and tired, so I abandoned my post and fled for home.
I still felt all right enough to go in to work on Thursday morning, however. Once again, the train ride made my ears block up for an hour. I noticed that food was remarkably flavourless, including strong flavours like goat cheese and bacon, but I enjoyed my bacon breakfast sandwich anyway. My day went by, and I was tired early and fled for home once again. I noticed that my mouth was hurting a bit, although I hadn’t developed any mouth sores thankfully – there was just a dull ache in my gums and jaw. And I was more tired than I had been the day before.
Friday, Adam and I had plans to meet at lunch and go for a tour of the TRIUMF Cyclotron at UBC, so I went in to work for the morning. I was noticeably more tired by mid-morning on Friday, and the plugged up ears kicked in and didn’t go away for the majority of the day. By the time we had arrived home after what turned out to be a very long day that included eating at wonderful Burgoo, I was completely exhausted.
Saturday was harder. My energy has hit an all-time low. I honestly can’t remember a time when I felt quite the way I do now; I suppose that’s because I’ve never been here before. I made pancakes and sausages for breakfast, ate with the family, and made my way to the couch where I lounged until it was time for a children’s birthday party.
The birthday party was easier than it could have been. I played wallflower and sat on the floor while Adam chased Pandra around and Lyra played along with the party games. It felt a little weird for me, though. Parties are already awkward and strange, and feeling listless doesn’t help so much. I was beyond the point of feeling like the stealth cancer girl anymore.
At home in the afternoon, I lounged on the couch some more while my children ran amok. It was beyond exhausting, so that was about all I managed for the rest of the day.
That was the first time, really, that I felt like things were difficult… that I really felt the potential for this process to become a challenge. Finally, everything had started to feel really hard. I was sluggish and and tired, and I didn’t care if anyone could tell. I didn’t have even have the energy to feel guilty about Adam single-parenting our kids for much of the day. At some point it just doesn’t have any impact anymore.
Fortunately, I feel a lot better today than yesterday. The underlying exhaustion hasn’t gone away, but spending much of yesterday resting means that today I don’t feel as immediately wrecked as before.
This is a good thing, because this afternoon we’re going to have a party and shave my head before the hair starts falling out on its own in clumps. I have a lot of hair, and it is very thick. I’d rather it not clog my drains… plus, I have always wanted a good excuse to shave my head, but I’ve never had the nerve to follow through.
I like throwing parties. They are generally haphazardly planned, often without much lead time for guests, and they always seem like they could easily be a huge failure. Somehow, though, things work out in my favour: people show up, and there’s enough food and drinks, and everybody has a good time. I take the ‘if you build it, they will come’ approach, and so far it hasn’t steered me wrong.
That’s what today is. I’ve invited random people (and probably forgotten some, oops) and said ‘just show up and bring some food, or don’t bring food, it’ll be fine.’ My head will be shaved by whomever wishes to make the attempt (multiple times, maybe) and if anyone else feels like shaving their heads they can (although that’s not the point).
We’re getting together to celebrate. I won’t let a bit of chemotherapy and cancer prevent me from having a good party with my friends. Moping about never solved anything.
Monday morning started off the way most Mondays do: getting the kids up earlier than they want us to, feeding them, packing them up for daycare/school, and heading out the door to deliver them. But instead of going to work, Adam and I got some breakfast with coffee and headed to the hospital for my first chemotherapy treatment.
While I’ve read plenty about chemotherapy and the drugs involved, and was sent this great post about what it’s really like to get chemotherapy, I had some vague trepidation about the process itself. Knowing on paper what’s to come and actually experiencing it are two different things. Having already gone through a false start to chemotherapy last week, I had already gone through a few nights of restless sleep and anxiety. Last night it took me a little longer than usual to fall asleep, but it wasn’t too bad, and once I get to sleep I was good for the night.
About an hour before chemo was due to start, I took the first of my arsenal of anti-nausea drugs – a fancy expensive drug called Emend.
At the hospital, I headed first to the lab to do some bloodwork. They need to check my blood counts before I go to the cancer centre for chemo: they check the red blood cells for signs of anemia (low iron), check the platelet count (platelets make my blood clot, which is handy), and white blood cells to make sure I’m not at a high risk of infection from low white blood cell count.
After that was done I walked over to the Cancer Centre, where I’m supposed to weigh myself and hand it in to the pharmacist. Having worked in a couple of food production factories, I already know how to tare (or zero) a scale, so it’s not really a tough job. The pharmacist makes sure my weight hasn’t changed and gets the drug dosages ready for my chemotherapy treatment.
Lily, a friendly chemo nurse, sat down and gave me a warmed flannel blanket so I could settle into my very comfy chair. She hands me four pills — two more of the anti-nausea drugs. Ondansetron (aka the electronic music robot reindeer that pulls Santa’s sleigh?) is a receptor antagonist that helps fights nausea by reducing the effects of seratonin, although I don’t entirely know how it does this. I’m sure it’s pretty badass about it though. The other is Dexamethasone — a steroid. I haven’t figured out how this one fights nausea, so maybe it’s for something else.
She then looked for a good vein to put in my IV, and was not impressed with her options. I’ve been through a lot of bloodwork, and I can attest to this: my veins aren’t so keen on complying. She put her IV into my left arm first, but the vein collapsed in on itself and said ‘NOPE’. Attempt No. 2 on the right wrist was more successful, but only slightly. So we discussed the idea of putting in a mediport (let’s just call it a port like everyone else does), which seems like a good idea to me.
I might be set up with a port in time for my next treatment, or I might not. Adam and I figure we can use it not just for chemo, but also for food, coffee drip, an audio input, and a direct fibre-optic connection to the internet. I’ll be going cyberpunk. What’s another teeny surgery on top of the rest, if it’s going to make life easier overall? Also, Cyberpunk!
ABVD: The Hodgkins Lymphoma treatment
I’m going to go over the chemo drugs I get, but please note: I am not a doctor, and this is not medical advice. This is my understanding (very simplified) of what these are and how they work. If you want to know real information, do some proper research and talk to a doctor.
A is for Adriamycin
With the IV in and the saline drip making my arm feel cold from the inside, nurse Lily brought over the first of my chemo drugs: Adriamycin.
Adriamycin is bright red, which has spawned the lovely nickname of the red devil. It’s given via a huge syringe over a span of a few minutes. The nurse plugged the syringe into my IV drip and sat there adding it, bit by bit, until the huge syringe was gone. Side effects of this one include pee turning neon pink, mouth sores, and hair loss. Oh, and nausea. And if you get it on your skin, it actively burns you. If it goes into your veins too quickly without diluting well enough, it burns your veins. Unpleasant stuff, the red devil.
The drug is also called Doxorubicin; Adriamycin is a brand name. It’s a drug that comes from bacteria found in dirt. They found some soil-based microbes in an area surrounding a 13th-century castle in Italy near the Adriatic Sea, studied it for years, and discovered that it was effective against tumours I honestly couldn’t make this up. Years of study and modification have made it less toxic (although still kind of toxic, especially to the heart). But don’t worry folks, it’s natural! Just don’t read the adverse effects on the wikipedia entry about it unless you feel like scaring yourself some.
I like to think of these drugs as itty bitty anti-cancer super-soldiers. In the arsenal, Adriamycin is a massive shirtless behemoth of a hairless monster-man hybrid with a glowing red sword. He looks scary, but he’s almost all talk — when he swings that sword and hollers at the cells, their DNA panics, gets distracted, and forgets how to divide and reproduce when it’s supposed to. Unfortunately, he’s kind of a douchebag and he scares a lot of other cells too. And everybody wishes he would put some clothes on over that loincloth he’s wearing…
B is for Bleomycin
The next drug Lily brought over to me was Bleomycin. This one is an antitumor antibiotic, and it’s made out of a naturally occurring soil fungus. I am not joking, it’s another natural drug. Who knew that dirt was so full of curative properties? No wonder I let my kids play in it!
Its side-effects include some scary things like pulmonary fibrosis and impaired lung functions (it is suggested that I no longer go Scuba diving or climb mount Everest), fever, hair loss and mouth sores again, and poor appetite and weight loss.
Similarly to Adriamycin, this drug works by making the cells forget how to divide and copy themselves. In the super-soldier army, Bleomycin likes to hang out with his good buddy Adriamycin. I imagine him to be a little like Chester to Adriamycin’s Spike, although that doesn’t mean they actually work together or anything.
Chester isn’t as big and scary as Spike, but he’s kind of distracting and annoying, so once again the cells forget what they’re doing and don’t multiply. Bleomycin irritates the cells so much that they give up and perform seppuku.
V is for Vinblastine
This is the first of my anti-cancer drugs that does not come from dirt. Instead, Vinblastine is classified as a plant alkaloid, which means it’s made from plants. It’s made from four separate plants: the periwinkle plant, bark of the Pacific Yew tree, the May Apple plant, and the Asian “Happy Tree”.
It was administered by hooking up a bagful of it to my IV line and letting it slowly drip into me.
I imagine Vinblastine as Audrey II from Little Shop of Horrors. FEED ME SEYMOUR! I envision many tiny Audreys running through my veins, screaming at my cancer cells and eating them up. Not because it’s accurate, but because it’s fun. Vinblastine inhibits the microtubule structures within the cells, which prevents them from dividing and replicating themselves, which ultimately kills them.
D is for Dacarbazine
Dacarbazine seems to be a strictly chemical drug — there are no castles, dirt, or plants involved, as far as I’ve read. There was research done in Alabama, and that research produced Dacarbazine. It also works differently from the other three drugs, by destroying cancer cells during their resting phase rather than during the dividing phases. It’s known as an alkylating agent.
Lily attached the bag of Dacarbazine to my IV and set it to drip into me for about 45 minutes or so. When I commented that my arm was aching a bit from it, she added more saline to dilute it as it went in, and extended the amount of time it was going to take. This is another drug that burns your skin and veins if it’s not well diluted. As of today, I have no pain from the injection site or up my arm, so I think it was diluted enough, thankfully.
Side-effects again include hair loss and nausea, as well as low blood counts (anemia) poor appetite, and elevation of blood liver enzymes. It can also sometimes cause flu-like symptoms and numbness or tingling in the hands or feet, although this is less often.
Dacarbazine is the ninja in my mighty army. While the other guys are attacking my cells head-on when they’re awake and trying hard to multiply, Dacarbazine is sneaking in under the cover of darkness, taking them out silently as they try to sleep. You never see Dacarbazine coming; silent but deadly. Unfortunately it also attacks all your fast-growing cells indiscriminately, so it has very poor eyesight. A blind ninja. But still deadly!
Talking with the dietician
During the chemo treatment, a dietician came by to go over my weight loss last year (making sure, once more, that it was good, healthy weight loss) and to discuss my diet. I need to increase my protein intake while I’m on chemotherapy — it helps fight off infections and the like. I should be able to handle that. She recommended lots of goat cheese. I can definitely handle that. And I have to eat lots of fibre, because some of the drugs can stop you up right good. Duly noted; I’d like to avoid that.
What’s next for me?
I came home from chemo yesterday and had lunch at the local vegan restaurant of tasty goodness, Chomp. Food will start tasting weird and flavourless soon, so I want to enjoy what I can now until this experience is done.
I spent the rest of yesterday relaxing. I had some mild nausea in the evening, so I took one of my additional anti-nausea drugs to help control it. This one is an anti-psychotic called Prochlorperazine, generally used to treat anxiety, tension, and delusion, which also happens to control nausea. It was helpful, but I only need to take that one on an as-required basis, so I’m not going to rely on it too heavily if I don’t feel bad.
By the time we were putting the girls to bed I was already quite tired. Once the girls were both down I started writing about the day. By the time I was half-way through my writing, I realized my brain was getting muddier and fuzzier, and I couldn’t focus. I was also having some trouble typing accurately, which made me crazy, so I decided to quit for the night and continue in the morning. I was in bed early and fell asleep pretty quickly.
Today I’m taking it easy at home, gauging how I feel and how controlled the drugs are keeping my nausea. It’s been good. I’m a little brain-fuzzed, but functional, and the nausea is under control. I just feel a bit off and muddled, otherwise.
I’m going to go out to run a couple of easy errands with Adam and see how that goes; if it’s all right, I may go in to the office tomorrow for part of the day at least — I don’t want to get stir-crazy at home if I can help it.
My hair won’t fall out for another week or two, so this weekend I’m going to have a head-shaving party. Come on out for the fun! Head-shaving is optional — I’m going to do my head, but you don’t have to.
The next chemotherapy session is in two weeks. But this time I’ll know what to expect, and it will be easier on my system, I’m told.
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.
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.