34. The second PET scan

Thursday 19th September, 2013

The day had finally arrived when I would find out if the chemotherapy was having any effect on my cancer. It was the day of the follow-up PET scan. If you need to refresh your memory on what a PET scan is, click here to read about my first PET scan. It was only a few days before this second PET scan that I started writing this blog, so many people were aware I had strong opinions on inappropriate things to say with someone with cancer. As a result, I don’t think  anybody really knew what to say as they were worried about saying something inappropriate. That actually suited me fine. I was happy for people to say nothing. What can you say? Good luck – not really appropriate because luck has nothing to do with it and it’s not an exam or a job interview. It is something you have no control over. Some people just said they were thinking of me and hoped the results were good. That was appropriate. I don’t recall if anybody even said this but I would suggest you don’t say “I just know the results will be good” because actually, you don’t know and then what are you going to say if they’re not good? And don’t ask “Are you nervous?”

I dropped my daughter at school and headed straight to the radiology centre for my 9:15 am appointment. I was feeling a bit emotional that day. At the time, I didn’t think it had anything to do with cancer and the anticipation of finding out what the scan showed. It was about other things going on in my life at the time, but looking back maybe the cancer stuff was a factor. I went up to the desk and was told to take a seat, and I waited and waited and waited. I think I waited close to an hour which I know is not long if you’re in the public health system, but in the private system with probably the first appointment of the day it was a long time and it pissed me off a bit. The scanning was going to take a couple of hours as it was.

Finally my name was called and I was escorted into a small room where I was given some oral contrast to drink (for the CT scan) and two radiographers fussed around, neither of them wanting to be the one to have to put an intravenous cannula in a doctor! I gave the lucky candidate the good arm and she went for a nice juicy vein in my cubital fossa (front of the elbow) and much to her relief, the first attempt was successful. She was however, a bit embarrassed about all the blood that spilled all over the floor.

I was then taken into the room with the iron walls where I was expecting to see the ancient looking, big metal machine in the corner, which I was planning to take a photo of, but it wasn’t there. Had I imagined it last time? The radioactive glucose was simply injected from a small syringe and I was left to radioactivate. The radiographer said she would be back in 50 minutes. There was no radio with fuzzy reception this time. Just me and silence. I don’t know how long I was left there for but when the radiographer returned, she apologised for leaving me so long.

I was taken into the PET scanning room. I didn’t have to get changed into a gown this time. I was just asked to remove my bra and when I was lying on the thin table I was covered with a blanket and pulled my pants down to around my knees. The scan was much the same as last time. I had to lie very still with my arms by my side and I was very, very slowly passed through the donut. When that was done, I was expecting another scan with my arms above my head but I was told I was done and could get off the table. I asked about the second scan and they said it wasn’t needed and they only usually do that with the first staging PET scan. Were they telling the truth? Or did they not need to do it because this PET scan still showed cancer everywhere so it wasn’t really important exactly where it was? Or was it showing no cancer so they knew the scan with my ams above my head would be pointless? I was thinking too much.

I was then asked to drink another cup of oral contrast prior to the CT scan. Since there was no ancient looking metal machine in the room with the iron walls, or anything else remotely interesting enough to take a photo of for my blog, I took a photo of the cup of oral contrast. Very interesting! And Lisey, the private oral contrast doesn’t taste like aniseed. I’m not entirely sure what flavour it was, but it wasn’t aniseed.

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The cup of oral contrast.

The CT scan was quite uneventful. This time I did have to put my arms above my head, so I had two injections of intravenous contrast (and hence felt like I wet myself twice), one for the scan with my arms by my side, and one for the scan with my arms above my head. The CT scans are much quicker than the PET scan so that part was over with quite quickly.

The radiographer told me to go to the front desk to sort out payment and then to wait and he would give me a copy of the CT scan films to take. I told him I didn’t need the films. I actually didn’t want the films because I didn’t want to be tempted to look at them and misinterpret them. He told me my haematologist always wants his own hard copy of the films. I thought that was odd because I hadn’t taken a hard copy after my first CT scan back in July, but then it occurred to me that that CT scan had been requested by my GP, not my haematologist.

So, I took the films and headed out to the car. I tried not to look but I couldn’t stop myself. I pulled out one of the several sheets in the envelope and it just happened to be scans of my neck, where most of my enlarged lymph nodes were in the beginning. It looked to me like there were a lot of prominent lymph nodes which had taken up contrast. Shit! I told myself not to be stupid, and to wait, and I didn’t look at any more films. It was only a matter of hours until I would see the haematologist.

5. Diagnosis confirmed

On Friday 12th July, I got the unofficial confirmation of the diagnosis.  A fairly rapid turn around having first presented to my GP only four days earlier.  The report hadn’t been typed but Saurabh had spoken to the pathologist who was reporting it.  Saurabh called me and told me I had nodular sclerosing Hodgkin’s lymphoma.  It was probably a harder phone call for him than it was for me.  It can’t be nice telling a friend they have cancer but it was exactly what I was expecting so there was no feeling of shock that came with this news.  It was more a feeling of ‘right, now we can get on with things’.  There are several types of Hodgkin’s lymphoma.  I won’t bore you with the details but basically the type depends on what it looks like under the microscope.  Nodular sclerosing is the most common type and I was actually relieved I had that.  I’d been having these irrational thoughts that cancer patients have.  Hodgkin’s lymphoma is a pretty rare cancer.  According to the Cancer Council Australia website, about 1 in 500 people will be diagnosed with it by the age of 85.  Compare that to breast cancer, 1 in 8, or bowel cancer, 1 in 10 for men and 1 in 15 for women and you get the idea.  I decided that since I had a rare profession (there’s only about 40 forensic pathologists in Australia) and a rare cancer, I would get the rare subtype with the rare outcome……death.  I was therefore happy (well as happy as you can be with a cancer diagnosis) with the most common type.  I sent a few texts to people letting them know that the diagnosis was confirmed.  Next week, I would find out what joys were in store for me in the months ahead.  I had an appointment with the haematologist on Tuesday 16th July.  I knew a bone marrow biopsy was a distinct possibility for staging but I really hoped that wouldn’t be necessary.

For anyone who’s interested, which is probably a grand total of none of you, this is what nodular sclerosing Hodgkin’s lymphoma looks like under the microscope.

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And this is what a normal lymph node should look like.

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I know what you’re all thinking (except for the pathologists)……..they look the same!  Well, just goes to show you how clever pathologists are doesn’t it?

4. The lymph node biopsy

I had the lymph node biopsy on Thursday 11th July, just two days after seeing the haematologist.  On Tuesday night I had mentioned to my husband that tomorrow, I might call a friend who is a surgeon and works in the city.  My husband called him that night.  I was going to disguise his name for this blog, because I thought that was the done thing, but I figured if I am not going to insult him and I have his permission, why not use his real name?  Anyone who knows him would have worked out who I was talking about, and anyone who doesn’t know him still won’t know him when I mention his name.  His blog name was going to be Calvin Klein.  His name is Christian Kenfield, Mr Christian Kenfield.  Not a very creative disguise.

I worked with Christian at Geelong Hospital for several years beginning when we were both interns.  During those years there were many drunken nights.  One of us may have even fallen asleep on the floor of a crazy German restaurant one night.  Despite knowing how much he liked to party out of work, I knew that at work he was dedicated and meticulous.  I trusted him to perform my minor surgery.  I spoke with Christian that Tuesday night after seeing the haematologist and he asked me if I’d like him to take a lymph node out.  I said I would love him to.  It turns out the timing was perfect as this man travels a lot and he was off interstate or overseas the day after the biopsy.  He offered to do it on Wednesday but we decided Thursday would be better for both of us.  It gave him more than 12 hours to organize it and it meant I could still do reading with the preps on Wednesday.

After reading, Wednesday was spent organizing a pathologist to look at my lymph node.  I was pulling a lot of favours from colleagues already! I texted another friend, Saurabh, a pathologist who I have known since our registrar days and who I last knew to be working at the hospital where my lymph node would be sent.  He said he didn’t work there anymore and asked why I was asking.  I sent a casual text back saying I was being investigated for Hodgkin’s lymphoma and the phone rang within seconds.  There were a few expletives (anyone who knows Saurabh will not be at all surprised by that) about just dropping that into a text but he basically said to leave it with him and he would make sure the pathologist who is most skilled at diagnosing lymphoma looks at it.  He said if I had the operation on Thursday, the pathology report would be completed by Monday, Tuesday at the latest.  I texted Christian and asked him to write the pathologists name all over the request slip.  Everything was set.  I also rang and made an appointment with my haematologist for the following Tuesday, one week after I had last seen him.  Much quicker than the three weeks it would have taken if I’d seen a local surgeon.

I fasted from midnight, woke up early and my husband dropped me at the hospital in the city and he went to work.  My mum stayed at my place the night before so she could drop the kids at school and childcare.  Things moved pretty quickly in hospital.  Straight into a room, changed into a hospital gown, a quick chat to the anaesthetist who discussed whether he would intubate me or use a laryngeal mask depending on whether Christian took a lymph node from my neck or supraclavicular region (above the collarbone).  I was then wheeled down to theatre where I met some nurses and the anaesthetist again.  An intravenous cannula was inserted and then Christian appeared.  He gave me a kiss and I asked if he greeted all of his patients that way.  He felt my nodes (that almost sounds rude) and decided to go for one above my right collarbone as he thought that would give the best cosmetic result.   I really wasn’t worried about the cosmetic result.  I knew the scar would be small and a little reminder of this adventure didn’t bother me.  I was wheeled into the operating theatre, transferred on to the operating table, given some fentanyl which made my head spin and then some propofol and I was gone.

I have no idea what happened after that but the next thing I remember is waking up crying and having absolutely no idea why I was crying.  Something to do with having cancer perhaps? There was a male nurse sitting by my bed and he told me I’d woken up earlier with a really stressed look on my face and had then gone back to sleep.  I asked how long the operation had taken.  He looked at the chart and said “40 minutes”.  I was surprised by that.  It seemed like a long time for a fairly simple procedure, but not being a surgeon I really have no idea.  I concluded that Christian must have been meticulous.  Christian then appeared and told me everything went well and gave me instructions on when to get the stitch removed.  He’d put in one continuous subcuticular (under the skin) stitch to achieve the best cosmetic result.  He also told me he had hand delivered my lymph node to the pathologist I had arranged to look at it.  What service!

I was taken back to the ward where I spent the next two hours feeling very spaced out and lying very still.  When I reached for my phone after that two hours, I knew I was feeling better.  I sent a few texts and took my first cancer selfie.

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My first cancer selfie. Still somewhat drug affected.

I also took a photo of my lunch, not exactly sure why.  Lisa take’s photos of her surgeons shoes.  I take photos of my lunch.  Don’t worry, it’s not an ongoing theme.

Not sure why I took this photo but I might as well share it.

Not sure why I took this photo but I might as well share it.

I was given some discharge medications; quite a lot for what I thought was a small procedure.  There were three different types of pain killers and a very strong drug for nausea.  I didn’t think I’d be needing that but thought I might as well hold onto it for when chemo starts.

As I was leaving the hospital Christian called to make sure I was OK.  I said to him, “I meant to ask if you minded operating on me, because I wouldn’t do your autopsy”.  He said that he doesn’t make a habit of operating on friends but he knew that he would take better care of me than anyone else.  And that was true! The follow up has been pretty amazing.  Text messages from the top of a hill when he can get a signal in remote Queensland, text messages from the Solomon Islands.  He has even offered to cook dinner for the family.  I don’t think there are many people out there who have a meal cooked for them by their surgeon.  That is pretty extraordinary patient follow up!  But my God, won’t he be in trouble if he doesn’t come through with the goods now?  Christian is single by the way ladies. If anyone is interested, drop me a line and I would be happy to conduct interviews. Imagine if I got a wedding out of this blog.  Now that would be an achievement and would have to go down as something good to come out this not good cancer!

I went out for dinner with the extended family that night.  A strategically placed scarf covered up the surgical dressing and those who knew were under strict instructions not to look at me sympathetically and not to mention the ‘c’ word.  I still wasn’t ready to talk about it, but then again it had only been three days since I saw my GP.

3. Meeting the haematologist

Tuesday 9th July, 2013

When you get cancer, you suddenly own a lot of people.  My haematologist, my surgeon, my chemotherapy nurse, my chemo buddy.  The list goes on.  I’d done all the preliminary checks on the man who would be my haematologist – googled him, asked colleagues if they knew him.  I found out he is an associate professor, so that means he’s been around for a while, and somebody who used to work with him told me he is brilliant and ‘only does blood cancers’.   Sounds like somebody I want in my corner.  He is also a great cyclist and follows Le Tour avidly, so I am told (so you will approve of him Ev).  I was happy with the doctor who had been chosen for me and didn’t think I’d need to be seeking a second opinion from the outset.  I had an appointment to see him at 3 pm.

I think I spent most of the day in bed prior to the appointment, mostly thinking about dying.  I thought about my funeral.  I thought about how my children would be without me.  I knew they would cope but it would completely change their lives.  I wouldn’t be there to help them with homework, give them a hug when they hurt themselves, go to school plays, go to their weddings.  Would they become drug addicts because they didn’t have the influence of a mother in their lives?  I thought about buying them birthday presents for the birthdays I wouldn’t be here for, but then thought that might be selfish, constantly reminding them of me when they’d need to move on.  I was more worried about my six year old daughter because she knew me and I’m pretty sure she’d miss me.  I’ve read about other people being more upset about leaving the younger children who didn’t get the chance to get to know them, but for me it seemed better that my son was too young to really remember me.  He is also a complete daddy’s boy at the moment, so that makes it easier.  I even thought about making caramel slice (I make a devine caramel slice, if I do say so myself) for everyone to eat at my wake.  I knew I didn’t have a certain death sentence but these are the things you think about in the early days.

Now is probably a good time to talk about the staging of lymphoma.  There are four stages:

  • Stage 1 – one group of lymph nodes involved
  • Stage 2 – two or more groups of lymph nodes on the same side of the diaphragm involved (eg. Lymph nodes in the neck and chest)
  • Stage 3 – lymph nodes on both sides of the diaphragm involved
  • Stage 4 – involvement of one or more extralymphatic organs (eg. Bone marrow, liver)

There is then an A or a B placed after the stage depending on the presence or absence of ‘B’ symptoms – fevers, weight loss, night sweats.  Based on the findings of my CT scan and the fact I didn’t have B symptoms, I would be stage 2A.  Obviously the earlier the stage, the better the prognosis.  The presence of B symptoms also gives you a slightly worse prognosis.

So, just before going to see the haematologist, I was sitting on the couch and I felt hot so I thought I would check my temperature.  I checked it about four times and it ranged from 37.8°C – 38.2°C . I had a fever, so I decided I had B symptoms, which probably meant I was going to die.

Off I went to meet the haematologist, stressed and tearful.  It was a fairly quick consultation.  He was very matter of fact.  No sympathy but I wasn’t looking for that.  I just wanted facts.  He took a history and then I got on the bed to be examined.  He felt the lymph nodes in my neck and also felt in my armpits and groin.  He felt my liver and spleen to see if they were enlarged.  I wondered why since he would have known from the CT scan that they weren’t.  I then sat up and he thumped my spine, listened to my heart and lungs and asked me to put my arms above my head and hold them there.  I knew why he was doing all these things – thumping my spine to see if I had any pain from bone marrow infiltration, holding my arms above my head to see if my face went red due to enlarged lymph nodes obstructing my superior vena cava (SVC obstruction – an oncological emergency!).   I didn’t have any of the signs he was looking for.

I sat down on the chair again and asked about treatment.  His response was “usually we walk before we run” or was it crawl before we walk?  It was one of those.  He didn’t want to go into too much detail until the diagnosis was confirmed.  I looked at him with a raised eyebrow as if to say “Come on, you and I both know what we are dealing with here.”  He said it was either Hodgkin’s lymphoma or sarcoidosis but his money was on Hodgkin’s.  If it’s Hodgkin’s, he told me he expected good things as I had small volume disease (that means small lymph nodes) and no other adverse features.  I didn’t know what the adverse features were then and I didn’t ask.  I told him about checking my temperature four times and asked if that meant I had B symptoms.  He chuckled at the fact I’d checked it four times and said I didn’t.  He told me treatment would probably involve 6 cycles of ABVD chemotherapy.  He told me what ABVD stood for (the drugs that are given) but didn’t say much more.  I probably wouldn’t have radiotherapy because the field would be too big.

So, the next step in this adventure was a lymph node biopsy.  That’s an excision biopsy which means removing a whole lymph node under general anaesthesia.  He asked me if I had a favourite surgeon and I said I didn’t know any local surgeons.  He said he’d refer me to a surgeon of his choice and then see me again one week after I had the biopsy.  I went out to the reception desk to get an appointment made with the surgeon.  The receptionist mentioned the name of the surgeon.  It was somebody I went to university with.  I haven’t seen this person since university as we worked in different hospitals.  I am sure he is a very capable and accomplished surgeon but I just wasn’t happy about someone I went to university with operating on me, even if its an operation he could probably do with his eyes shut.  Chances are, he might not have been happy about operating on someone he knew either.  The receptionist called and fortunately the surgeon was on holidays for the next two weeks.  She knew I wasn’t going to wait that long so an appointment was made with another surgeon for the following Monday.  This was an appointment just to meet the surgeon to arrange the lymph node biopsy, not to actually perform the lymph node biopsy.  I did some quick calculations; one week until I see the surgeon, perhaps another week until the biopsy is performed, and then another week until I see the haematologist again to get the results and find out what lies ahead for me.  3 weeks!  And that’s with private health insurance.  I was stunned.  I couldn’t believe it would take that long.  How long would it take in the public health system?

I had gone into the appointment thinking there would be a sense of urgency in getting a diagnosis and getting on with treatment.  I actually thought I’d be hooked up to chemotherapy by the end of the week or early the next week.  I was comforted by the fact that the haematologist was in no hurry.  I walked out of that appointment feeling much calmer.  To be honest, I felt like I just had a cold, something minor.  Perhaps things weren’t so serious, but I still needed to know sooner than three weeks and get treatment underway.  I took the card with the appointment time for the surgeon, but I knew I wouldn’t be going to it.