I knew it was going to happen. I even shaved my head before I started chemo so it wouldn't fall out in clumps. It's been almost three weeks since my first treatment. I was beginning to think maybe it wouldn't fall out. And then today it started happening.
Ever since I shaved my head I've fallen into the habit of rubbing it. It's so soft! Anyway, today I was thinking hard at work and rubbing my head when suddenly I noticed little grey hairs raining down on my desk. At first I thought it was just a few but no, they're all starting to fall out now. After my shower tonight the drain cover was full of grey hair.
I'm not vain about my hair. It's something that grows from head over which I have very little control. It's always done whatever it wanted regardless of what I tried to get it to do. When I was younger it was dark and curly. I had Shirley Temple ringlets if I let it get long. At that time in my life I didn't appreciate the curls. It didn't go with my more butch-like persona.
As I got older my hair began to turn grey and the texture changed. It went from curly to coarse and wiry. After a while it stopped growing down and started growing up and out. If I let it grow I'd end up with a bushy head of hair like Einstein. I rarely let it get very long because that's not a look I'm going for.
The fact that my hair is falling out means the chemo is working I suppose. It means I'm one step closer to getting rid of this fucking tumor. I've been checking the lump periodically and it seems to be getting smaller. I hope it is and it's not wishful thinking. I have my next treatment this Thursday and then I see Dr King the following week to do an ultrasound. Then we'll know for sure.
I've been surprised at the lack of side effects I've experienced so far. I had nightmare visions of constant nausea, vomiting, and diarrhea. I imagined feeling so bad I didn't want to get out of bed or having open wounds in my mouth. So far though it's not been like that.
The medication they put me on for the first four days have definitely kept the nausea and vomiting at bay. They also can cause constipation so diarrhea has not been a problem. The main things I've noticed so far is that my soft palate feels like I drank something too hot and burned it. My tongue feels that way as well.
The first few days my asthma was in overdrive and I had a pretty bad headache but luckily that only lasted a short while. A week and two days in and I'm feeling pretty good!
So far no hair loss but I went ahead and had Shannon shave my head again so I'm basically bald. I use to drink my coffee with a bit of milk and a couple sweeteners but that tasted disgusting. Now I drink it black which makes Shannon happy. She's been on me to get off the sweetener for ages. I feel pretty good. My energy level hasn't changed much. My attitude and outlook are still really positive. All in all I'm doing great.
When my doctor first told me that he wanted to start me on chemo he also said he wanted to have a portacath inserted in my chest. Having been a paramedic for a long time I'm familiar with portacaths. It's basically an IV port inserted in the skin so the nurses aren't constantly having to start peripheral IVs. It's easier, more sterile, and much less painful. At least once it heals.
The original appointment had been booked for August 20th but we went into level 4 lockdown on August 17th so the procedure was postponed. As soon as I heard we were going into lockdown I was really afraid they were going to postpone everything. As I mentioned in my last post the waiting is stressing me out more than the cancer so the thought of postponing the chemo indefinitely was terrifying. Fortunately, they don't postpone chemo so I had the treatment.
They called me on Wednesday and asked if I could come in on Thursday morning. Heck yeah! I said. With fucking bells on! I was psyched to be getting it done.
I had to be at the Southern Cross Hospital in Newtown at 7am. We weren't sure how long it would take to get there from Naenae so we left at 6:15am. Given we're still only in level 3 there was hardly any traffic on the road so we were at the hospital at about 6:35am. Shannon couldn't stay with me so she dropped me at the door and left.
A little past 7 the came to take me to my room. Turned out I was on a ward by myself with my own dedicated nurse. Given my cancer status they didn't want to expose me to too many people. I felt like Queen for a Day! My nurse was Jane and she was great.
She got me all checked in and into the very less than flattering hospital gown. The doc came in to tell me about the procedure and make an X on my chest and then it was time to go.
They wheeled me into the theatre in my bed and then I had to scoot from my bed to the metal surgical bed. For some reason they couldn't get it right up next to it so I had to bridge this enormous gap. Just as I got my ass on the surgical bed I let out an enormous fart because moving to the bed with my ass hanging out of the back of the gown wasn't embarrassing enough. Sheesh!
They don't make those surgical beds for comfort that's for damn sure! My ass does not allow me to lie flat but luckily I had Helen who made sure I was comfortable. She gave me a bunch of pillows and generally made sure I was doing okay.
Next came the IV which the doctor did with an ultrasound machine. I had never seen an IV done this way before. The doctor made a point of telling me the ultrasound machine was made in Denmark and he didn't really know how to use it. What a joker!
The IV in, now it was time for drugs! Given my history with drugs I'm always wary of what they're gonna give me. This wasn't a general anesthetic procedure but a sedation procedure. I remember lying on the bed with everyone bustling around. He told Helen to give me a dose of midazolam. The wall suddenly started going fuzzy and then there's a gap. At some point they put a drape over my face and shot me full of lidocaine but I don't remember any of that. At one point I remember it hurt like a hot razor so they gave me more lidocaine.
Next thing I know, they were done and were wheeling me into recovery. I had the whole room to myself. My reign as Queen continued! My lovely recovery nurse was Steph. She was pretty awesome as well. Since we're in level 3 everyone has to wear face masks so I would have no idea if I was standing in line at the grocery store with any of the wonderful people I met that day.
I wasn't in recovery long before I went back to my room where I finally got a sandwich! I hadn't eaten since dinner the night before so I was famished. That was the best egg and chutney sandwich I have ever had. And the cup of instant coffee was pretty good too.
Luckily I didn't have to stay in the hospital for long. Props to all the great staff but I'd really rather feel like shit in my own house. Shannon came popped back in to get me and I was home by 12. I had specifically asked not to be sent home with any narcotics so I was straight on to the paracetomol/ibuprofen schedule. Actually the pain hasn't been too bad. I mean, I'm not a masochist so pain isn't my thing but when you gotta deal with it then you gotta deal with it.
Here we are 2 days later and the main issue has become my skin's reaction to the adhesive on the waterproof bandages. By midday Friday I was already starting to feel the painful itch that accompanies my irritatingly sensitive skin reactions. A sore had developed where the corner of the bandage sat and the pain of that began to overwhelm the pain of the actual wound.
Last night I didn't want to sleep with nothing covering the wound and the medical tape was also causing a reaction so Shannon wrapped an ace bandage around basically my entire torso just to hold on a small rectangle of gauze. I really looked like I'd been in the war.
Today I've spent the day in nothing but my fleece so I could keep it zipped down and not have anything rubbing against the gauze. We've discovered that moleskin doesn't seem to cause a reaction so now the gauze is being held down with little strips of moleskin. Seriously who thought the main issue of this procedure would be wound dressing?!?
Finally the first treatment is done! It's such a relief to have started this process. One of the nurses at the clinic mentioned the long road I had just stepped onto and that's how it feels. I'm starting out on my long journey of recovery.
The clinic is one of the best in NZ supposedly. Everyone I've come in contact with there has been wonderful. Because NZ is in the middle of our strictest lockdown, level 4, Shannon wasn't able to come with me into the clinic so I left her in the parking lot with the free wifi and her laptop. My first meeting was with Dr Okonji. He's got such a great manner. Next step was into the actual clinic area where they administer the chemo.
I was supposed to have a portacath put in that would have made giving me the chemo drugs much easier but the lockdown postponed that so they had to go for a vein. Apparently I have pretty crappy veins but the nurse was able to get one in my hand first try.
The first drugs they gave me were ondansetron and dexamethosone IV. Next up was the adriamycin/doxorubicin which they call the red devil. It's got a bright red colouring, hence the red, and it is the one that causes the worst side effects, hence the devil. This med can damage tissue if it gets outside the vein so the nurse had to stand there the whole time and make sure it went in okay. After that came the second chemo drug, cyclophosphamide. This one isn't as dangerous so she was able to set that one in the pump and walk away.
At this point there wasn't much to do but sit there and read my book. I chatted with Shannon and my mom over Messenger. I surfed the web on my phone. Ya know, all the things you do when you just have to sit somewhere for a while.
There were a few other women also getting treatment at the same time. I wonder if these will be women I'll get to know? I'm confident I'll get to know the nurses. I'll be seeing them every three weeks for the next 12 weeks and then possibly the 12 weeks after that. Mom suggested I bake them something. I probably will. I enjoy baking.
The whole thing too about three and a half hours this time. They said it took longer this time because they were explaining everything to me. I felt bad for Shannon having to sit in the car for all that time but she went down to the grocery store for a bit. That and the pharmacies are the only things open right now.
Back at home I felt fairly uncomfortable. I was really tired and my head was pounding. They said the meds sometimes cause a headache. I was supposed to work in the afternoon but that wasn't happening. I spent the rest of the day on my couch dozing off. I was not looking forward to how I would feel the next day.
That turned out to be a non existent worry though. I felt fine the next day. I had a bit of a lingering headache and my asthma flared up a bit but other than that I felt great. Even now, two days after, I feel fine. I expected to be completely wiped out for the whole first week but that has not been the case. I have to admit it makes me wonder if the meds are working. I know that's silly but still...
I worked on Friday but had off today and Sunday. I spent the day today cooking. I've found that I really enjoy making a good soup or stew. I've made three in the last few days. Luckily we have a chest freezer so I can freeze these things! We'll see how the rest of the treatments go but so far, so good.
So far one of the hardest things about this whole cancer journey has been the waiting. I found the lump and had to wait to see my doctor. I saw my doctor then had to wait for the mammogram and ultrasound. I had those then had to wait to see my doctor again who referred me to a specialist. Had to wait to see him. I had the biopsies that day and then had to wait for the results. Found out I had cancer then had to wait to see the oncologist. Saw him then had to wait to get tests done. Now all that is done and I waiting to start chemo. I'm so tired of waiting!
I'm the kind of person who can dither all day about things uncertain. But when something is inevitable I just want to get it over with! I know that in the grand scheme of things waiting eight weeks from first discovery of an anomaly to treatment isn't that long but it's felt like six months to me. Over the weekend I was doing some reading on what's good to eat or not eat during chemo. There's so much info out there it's hard to narrow down what's helpful. It also totally depends on how my body tolerates the chemo. Will I be hungry? Will I not? Will everything make me nauseous? Will I feel pretty much the same as I do now? Will my mouth get tender so I can't eat some stuff? Will my taste buds change and things will taste weird? There's so much I don't know which makes it all hard to plan. I want to start now!
I want chemo to fix everything that's wrong with me which I realize isn't feasible. I want it to help me control my eating and help me lose weight. Honestly though I know that if I don't get my own eating issues under control no amount of weight loss would stick anyway.
Honestly I'm just tired of being in this holding pattern. Let's get this started!
Shannon and I met with the medical oncologist on August 12. Dr David Okonji at the Bowen Icon Cancer Centre. The appointment was first thing and since we don't like to be late we were there before most of the staff. Dr Okonji is wonderful! He spent an hour with us telling us the history of breast cancer treatment from 1979 until today including the pioneers who forged the path. He explained his recommendation of neoadjuvant chemotherapy followed by surgery to remove whatever is left. He answered all our questions.
The idea behind neoadjuvant treatment is that if chemotherapy is used first the tumor will shrink and when we get to surgery there will be less tissue that needs to come out. So instead of a full mastectomy it will hopefully be a lumpectomy and I'll get to keep my breast. Although truth be told I wouldn't be terribly upset if they removed them both. Boobs just get in the way. Bras are supremely uncomfortable!
I really took to Dr Okonji. He has a great manner and seemed really on it. It's important that a doctor instills trust. The folks at the Bowen Icon Cancer Centre all seem great as well. I feel better about the whole thing knowing I'm being taken care of.
I was supposed to have the echocardiogram on Wednesday and the portacath put in on Friday. And then NZ suddenly had positive delta COVID cases. We went from life as usual to level 4 complete lockdown with 6 hours on Tuesday. Luckily they were able to do the heart scan first thing Wednesday morning but the the portacath procedure has been postponed. I'm not sure when that will happen.
It's really strange going back into lockdown so suddenly. The rest of the world has been battling COVID for the last year and a half while NZ has been this little isolated country where we've had life as usual. Sure most of us wear a face mask on public transport but we don't really worry. Our pandemic experience has been vastly different from the rest of the people on the planet. Suddenly the delta variant call is coming from inside the house. Cases in Auckland and Wellington. Locations of interest growing every day. Just as I'm diagnosed with cancer and about to start chemo we suddenly have delta popping up all over.
Under level 4 we're all working from home. There's a lot of drama at work now too. There's a restructure happening and who knows where the chips are gonna fall on that one! Who will still have a job? Who will move up and who will move down. All I can do is my job and hope for the best.
It all started with the lump on July 2. I'm very sensitive to latex and elastic so after wearing a bra all day the underside of my boobs was hot and itchy so I was soothing the skin. That's when I felt it. Inside my left boob was an enormous golf ball sized lump. In fact it actually felt like a golf ball, hard and round. I was immediately scared. I called for Shannon to come tell me if this had been there before. She confirmed it had not.
Well fuck! My imagination immediately started running towards the terrifying and macabre. If I'm honest, though, I really didn't expect it to be anything other than benign. I'd never had lumps or bumps in my breasts before but I also don't have any history of breast cancer in my family.
The weekend dragged by until finally Monday morning I was able to call my doctor. Happily enough she was able to fit me in that afternoon. She felt around a bit and then said "Yep, that's concerning." She gave me a referral for a mammogram and an ultrasound. Unfortunately they weren't able to fit me in for that for more than a week.
During that 10 days I still didn't think it was going to be cancer. The doctor had used the words "High suspicion of cancer" but she told me that was because she wanted me to get in for the scans sooner rather than later. I strictly avoided Googling anything. I didn't need any fuel for my imagination. And yet I still didn't think it would be cancer.
I had never had a mammogram before. The only thing I knew was that they squished your boob onto a plate and that it was quite uncomfortable. Well that turned out to be exactly what they do. I had to stand in front of the machine while they pressed my boob flatter than I thought it would ever go. To say that it was uncomfortable is an understatement! I can see why women don't want to do it. I wonder if men have to have their balls squished like that. Since the medical field seems to cater to men then probably not.
Anyway, the technician told me she thought it was a cyst. A cyst! I was cautiously optimistic. A cyst would be benign and would go away on its own eventually.
Next up was the ultrasound. By this point I was completely nonplussed walking around with a top on. Somewhere along the line I lost my modesty. The ultrasound was done with me lying on the table. Where the mammogram tech had been personable and friendly, the US tech was cold and business-like. She poked and prodded all over my chest and found not only the golf ball sized lump but also a weird lymph node in my left armpit and a dodgy bit on the right side. She told me it was not a cyst. It was a solid mass, still quite suspicious. I would not know the result until I saw the breast surgeon and I wouldn't get an appointment with him until I got a referral from my GP. Still more waiting.
I saw the surgeon on July 23 where he did a biopsy on the three spots. My goodness that's a thing! It was actually pretty interesting watching him insert the needles using the ultrasound. He took samples on all three spots. And then it was another 10 days of waiting. All the fucking waiting was awful! At this point I just wanted to know one way or the other so I'd know what I was dealing with.
I met with the surgeon again on August 3. On the entire drive over I was trying to prepare myself for the worst but to be honest I was still convinced it was benign. The scenarios playing over and over in my mind were almost all how I would laugh off the uncertainty. How I would go into work the next day and tell them it was all a false alarm, that I was fine! Finally inside his office he said the spot on the right and in my left armpit were benign. The big lump was cancer. I stopped listening at that point. I was shocked. The word "cancer" kept echoing in my mind. You know how when you repeat a word over and over again it stops making any sense? You begin to wonder if that's actually the right word and if it's really spelled that way. Cancer, cancer, cancer over and over.
The doctor and his nurse gave me some pamphlets and other information and said they'd book me in with a medical oncologist. Soon we were leaving the office. I managed to hold it together until we got to the parking lot. That's when it all came crashing down and I melted into a puddle of tears on Shannon's shoulder. I cried all the way home. By the time we got to the house, though, I was feeling better and a bit more optimistic. What can't be avoided must be endured or something like that. No amount of wishing it away would get rid of the cancer so the next step was to deal with it.