41. Chemotherapy – round 8…..ho hum

Monday 4th November to Sunday 17th November

It’s all getting a bit boring really. A bit of chemo, a few days in bed. Nothing particularly interesting happened this fortnight…or maybe it did and I just can’t remember it. The chemo brain is quite bad now.

Chemo number 8 took place on the day before Melbourne Cup Day. Like many people, my haematologist had a day off so there was no pre-chemo appointment with him and no hard questions to be asked.

Jenni had to work that day so Joanne stepped in as my chemo buddy. She is definitely putting in the hard yards for that favourite sister status. The results of my blood test took ages to come through so there was quite a delay before chemo actually started. My neutrophil count was fine thanks to the G-CSF injection so there was no need to consult with any doctors before hooking me up. Once it started, it was pleasantly eventful. I was informed that renovations would be commencing in the chemo ward in a couple of weeks and go through until just before xmas. The area was quite cramped so anything that would give the staff more room to move without trolleys crashing would be good. If they finished the renovations on time, I would have the pleasure of receiving my last chemotherapy infusion in the newly refurbished ward.

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My chemo buddy for the day. I’m getting quite good at these selfies.

I started feeling tired while I was having chemotherapy and I may have even had a little nap. When I got home, I pretty much went straight to bed and again spent the next three days in bed. The chemo definitely seemed to be hitting me harder in terms of the fatigue but I had been told to expect that.

Apart from exhaustion and the feeling that I really couldn’t be bothered doing anything (which is probably exhaustion), there were no other significant ill effects. I didn’t have bone pain from the G-CSF this time which was good. The nausea seemed to be lasting a bit longer each time so I was popping the anti-emetic tablets more frequently. There was no vomiting; that pleasure was bestowed upon my daughter this time.

She came into my bed on Tuesday night and said she had a sore tummy. Shortly after she said she was going to be sick so I ran to get a bucket, hoping she’d hold it in until I got back. She didn’t hold it in but she got out of bed and took herself to the bathroom and vomited in the sink. I was so proud of her! I really expected vomit all over the bed. Perhaps I should have taken her to the bathroom myself and not worried about the bucket, but as I said, the brain isn’t working too well now. My mum was there and offered to take my daughter in to bed with her so I didn’t get sick too. I wasn’t trying to be a hero but I figured that I was going to feel like crap the next day anyway and I needed my mum healthy to look after the 20 month old ball of energy. If she got sick, I’d have to call in more back up. So I took my chances.

The vomiting continued all night, pretty much on the hour. Nine times in total but who was counting? At 7am I did a quick google search on zofran wafers and found out it’s OK to give them to kids, so I popped one on her tongue and there was no further vomiting. Wish I’d thought of that earlier! Zofran is a strong anti-emetic (anti-vomit) drug commonly used to treat nausea and vomiting after chemotherapy. The beauty of the wafers is that they just dissolve on your tongue so they work quickly and are perfect for kids. I am also happy to report that with frequent hand washing and extreme care, I actually managed to avoid getting gastro myself. Very surprised but very relieved.

I came out of the exhausted phase by Friday, and by that I mean I made it from the bed to the couch. The ‘good’ week was spent madly blogging, fundraising and recruiting new members to ‘The Good Tittie Team’. Jenni and I had a meeting with our uniform supplier to discuss what options were available. It was a long but productive meeting. Girls discussing colours is never going to be quick.

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The team uniform meeting. Yes, another selfie!

Since there is not much else to talk about, I will give you a quick update on the current status of ‘The Good Tittie Team’. The team was formed 6 weeks ago and started with two members. We now have 29 members and have raised almost $32,000. Eight members have raised over $2000 and have therefore officially qualified to walk. That leaves 21 members who are yet to qualify and it’s definitely not too late to donate!

Our fundraising efforts saw us race up to third top fundraising team, but we have now slipped down to fifth. We have three members in the top 100 fundraisers too. I did get up to 8th at one point but have now slipped out of the top 10, to 11th.

Our newest recruit is Bonnie. She has now taken the title of the youngest member of our team and will only be eligible to walk (by age) a couple of weeks before the event. Bonnie is my niece and daughter of Amanda (also on the team and a breast cancer arse kicker). She was my flower girl, shares the same middle name as my daughter and is a real sweetheart – being born on Valentine’s Day, she doesn’t have much choice. She has already kicked off her fundraising efforts with a massive $500 donation! Welcome to the team Bonnie!

If you would like to donate to ‘The Good Tittie Team’, simply click here.  This will take you to our team page.  Simply scroll down to see the members of the team and click on whoever you would like to donate to, preferably somebody who hasn’t reached $2000 yet (or me).  When you are on the page for that person, click on the big green ‘DONATE ONLINE NOW’ button.  It’s that easy.  If you’d like to make it a bit more difficult, go to http://www.endcancer.org.au and then you can search for our team (The Good Tittie Team, in case you’ve forgotten) or search for an individual by name. Any person or organisation donating $500 or more will be rewarded with their name on our team T-shirts. We are the second biggest team in the walk so we will stand out. Pretty good advertising.

This is also a final shout out to anyone who would like to join ‘The Good Tittie Team’ for something that is going to be so much more than raising money for a good cause. It is going to be a huge reunion of family and friends showing their support for two girls who had a pretty shitty 2013. Above all, it will be fun.  We will be ordering uniforms very soon so we need to finalise team numbers. If you would like to join, click on that ‘here’ button above, scroll down and click on ‘Join Team’. Let me know if you’re joining and I’ll give you the password. Go on, do it!

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32. Chemotherapy – round 4…..the new challenge

Monday 9th September, 2013

I usually see my haematologist prior to chemotherapy but he was on holidays so I’d seen the doctor who was covering him on the Friday before. That Friday was actually quite a busy day. A blood test in the morning to check on those damn neutrophils, a quick lunch with an old work colleague I hadn’t seen for a while and in to work to attend a cardiac genetics meeting. It was good to catch up with colleagues but there was no time for socialising after the meeting as I had to rush off to get to the doctor’s appointment. Bloody cancer!

I arrived at my appointment a couple of minutes late, thinking that wouldn’t be a problem as doctors are always running late. Not this one. Maybe because it was Friday afternoon.  She took a few minutes to read my file as she didn’t know me or where I was up to with my treatment, and then called me in. I could tell almost immediately that she was different to my usual haematologist. She was female for a start. I told her about my two sclerosed or hardened veins and asked if I’d need a PICC line. She said if I was asking about one this early on, I was probably heading towards needing one. I told her I’d prefer not to have one and also told her that it was the last drug I was being given, dacarbazine, that seemed to cause the most irritation and pain when it was being infused, so I thought this was the problem drug. Dacarbazine is the fourth and last drug I am given and it is infused over 1.5 to 2 hours. I asked if it could be given even slower than that, not that I wanted to spend any longer in the chemo chair, but she didn’t think that would help as it wouldn’t change the fact that it was an irritant drug in contact with a small vein. I then asked whether it could be prepared in a bigger volume of fluid so it was more dilute when it was being infused. Perhaps that would cause less irritation. She agreed that might help and made a phone call to pharmacy to ask them to prepare the drug in almost twice the volume they would usually prepare it in.  She asked if I had any problems with fluid retention after chemotherapy, which I didn’t, so it would be safe to give me a bigger volume of fluid without risking heart failure! I’m young and fit remember. Just hope that chemotherapy induced cardiomyopathy doesn’t kick in.

I asked her how my neutrophils were going as I’d had a blood test that morning. They were at an all time high of 1.5! 1.5 is actually still a bit low for a ‘normal’ person (ie. someone not having chemotherapy) but for me, it almost seemed excessive, three times what they’d been previously. Perhaps things were looking up. I later joked that maybe the chemotherapy wasn’t working anymore as it hadn’t knocked me around as much and my neutrophils weren’t being knocked around as much either.

She then looked at me with this knowing look in her eyes, I think it was sympathy, and asked how I was going. It wasn’t a simple “how are you?”, it was more “how are you really coping with the fact you’ve got cancer in your thirties with two young children and are having chemotherapy which makes you feel like shit, and you’ve still got 9 treatments ahead of you and you don’t even know if it’s working yet?” To be honest, I can’t even remember how I answered. I think I told her it was harder than I thought it would be but I was OK because the second and third rounds had not been horrendous like the first round. I told her the family were away at the moment so I had a lot of time to myself to relax and not worry about anyone else. I told her I’d even been out in the garden doing some weeding. She looked horrified. “You shouldn’t be in the garden with your neutrophils!” she said. I asked what was in the garden that was bad, thinking she might say some weird fungus or something but the answer was simple. “Dirt!” Yes, I suppose that makes complete sense. I just hadn’t really given it any thought. I could have a small cut on my hand, get a bit of dirt in it, and with no neutrophils to ward off any little bugs, I’m a sitting duck for septicaemia. “No more weeding for you!” she exclaimed.

She then told me about the ‘neutropaenic diet’ I should be following which is pretty much like the diet you are supposed to follow when you are pregnant. This was all news to me. She said that I probably hadn’t ben told all of this because I was a doctor and people assumed I knew. I am a doctor, but I’m a pathologist, not an oncologist, and my patients don’t have to worry too much about their diets.

We then had a quick chat about the upcoming PET scan which would be done about 10 days after the 4th hit of chemo. This would tell me if this chemotherapy was working or not. She told me to make an appointment to see her as soon as I got the appointment time for the PET scan, as my usual haematologist would still be away.

So, on Monday 9th September, I arrived for chemo number 4 (or day 15 of cycle 2 if you’re my doctor).  Number 4 sounds much better.  That’s one third of the way through chemo – once I got through the next two weeks that is, and provided the plans don’t change, which of course they could.  I was seated next to my chemo buddy, Karine, again today.  That day was her second last treatment.  I was happy for her, and also very, very jealous.  Soon enough (only 3 or 4 months later!) it would be my second last and then my last treatment.  I cannot wait!  The ladies next to me commented on my scarf and asked where I got it from so I was happy to be able to give them a pamphlet for Hat House and tell them how great the hats and scarves are there.  I gave the rest of the pamphlets to the nurses so they could go on display with all the other information there and hoped that the next generation of chemotherapy patients would not have the same difficulties I did finding scarves.

The challenge. I mentioned in previous posts, and discussed with haematologist, the difficulties I have been having with my veins sclerosing after chemotherapy and the possibility that I may need a PICC line.  I had already decided that if the vein sclerosed after this round of chemotherapy, I would get a PICC line.  I’m not really strongly opposed to getting one.  If I absolutely need one, I will get it.  I just need to be satisfied the reason or reasons are good.  It’s a bit like when I was pregnant and was searching for a reason to have a caesarean.  The fact that ‘natural’ childbirth is ridiculously and unnecessarily painful wasn’t enough. No idea why not!  I do not judge those that are too posh to push.  I applaud them.  My second labour was so intense and quick that there was not even time for drugs.  That was not my birth plan.  Actually, I didn’t have one.  Anyway, I’m digressing.  The PICC line.  The reasons I don’t really want one are all relatively minor which is why I won’t really be shattered if I need one.

  • It is a foreign body in my immunocompromised body so there is a risk of infection (probably low, but there), and having one in might sway my doctor to put me on bone pain causing Neulasta injections if my neutrophils remain low.
  • I have a one year old child who likes to pull things, but it will probably be well covered and taped for that not to be an issue.
  • Summer is around the corner so it will be constantly exposed for all to see.  That one really is minor.  I’m not that vain.  I think it’s hard to be too vain when you’re bald.
  • It will necessitate another weekly visit to hospital for flushing and a dressing change.
  • I won’t be able to swim in my pool, as you have to keep it dry! Come to think of it, maybe neutropaenic people shouldn’t be swimming in pools anyway.  Will have to ask my doctor that one.

A PICC line would however, save me at least 20 stabs over the coming months for intravenous access for chemotherapy and blood tests and would save my poor peripheral veins from further torture and constant pain when they sclerose.  Some of you are probably wondering why I don’t just get one.

So when I arrived for chemo today the charge nurse mentioned the trouble I’d been having with my veins and we briefly discussed a PICC line.  She asked if I was having 6 rounds of chemo.  I wish! I told her it was 12 – still 9 to go!  I told her I would get a PICC line if the vein that was used today sclerosed.  I went through the ritual of soaking my hands in hot water to dilate my veins.  When the nurse came over to insert the cannula she decided we wouldn’t waste our time with those small veins in my hand and wrist and would go for a big vein in my cubital fossa (front of my elbow).  Big vein, bigger volume of fluid and therefore dilute chemotherapy, heat pack to dilate the vein, infusing over 2 hours instead of 1.5 hours.  It had to work.

After the cannula was inserted the charge nurse came back and said “I think we’ll just book you in for a PICC line”.  I was quite perplexed by that.  I think she saw the cannula in my cubital fossa and assumed there were no veins lower down that were any good.  I told her I would wait and see what happened after today and that I still had one good arm! The nurse who put the cannula in also reassured her that there was no problem.  We just decided to go for a big vein.  So, call me determined or call me stubborn.  You can even call me stupid if you want.  It is now my mission to avoid a PICC line.  Chemotherapy number 4 went in with no problems.  No pain during the infusion like there had been the previous two weeks and no pain when I returned home.  We may just have found the successful formula.

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Have I set myself an impossible challenge in trying to avoid a PICC line?

I also received an appointment time that day for my PET scan.  This is the one that will tell me how well the chemotherapy is working.  Apparently, it should be negative! That’s what my usual haematologist had told me. Well that is the best case scenario.  I am not expecting it to be negative but that doesn’t mean I am expecting it to still show signs of cancer.  I’m just going in with an open mind knowing that it could show anything.  I know the chemotherapy is working as the itch has gone and the lymph nodes in my neck are smaller.  But how well is it working?  Time will tell.  My PET scan was booked for Thursday of the following week (19th September) at 9:15 am.  After chemotherapy I went upstairs to make an appointment with the haematologist to get the results.  I was informed that my haematologist would be back on 25th September so I could just wait and see him.  Really?  Wait six days for the result of the PET scan?  I don’t think so.  So I got an appointment for 2:15 pm on Thursday 19th September.  Do you think I’ve learnt my lesson from the last PET scan and I won’t get the results directly from the radiologist?  Probably not.  But at least this time I’ll be seeing the haematologist the same day so if the radiologist gives me bad news again I’ll find out soon enough what it really means for me.

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27. Chemotherapy – round 3

Monday 26th August, 2013

The day started like any other chemo Monday.  I took my daughter to school, stayed for assembly, returned home to meet Jenni and off we went to hospital. We were running a bit late so Jenni dropped me at the front door and I went in while she parked the car.

I had an appointment with my haematologist first, so I went upstairs to see him. This was the first time he’d seen me scarved up and without long hair so the appointment started with me saying “I’m looking the part now aren’t I?”.  He made a comment along the lines of once you get into the swing of things it’s not that bad and that the fear of the unknown is worse.  I told him about my sclerosed and painful vein following the last round of chemotherapy and asked him if I’d need a PICC line.  PICC stands for peripherally inserted central catheter, so now I’m sure you know exactly what one is.  I’d been having chemotherapy through an intravenous cannula which was then removed upon completion of chemotherapy. A PICC line is inserted peripherally (as opposed to centrally, usually in the upper arm) and goes all the way to a large vein (the superior vena cava) just before the heart.  The advantage of PICC lines is that they can be left in for months.  My haematologist said that it is not uncommon to run out of veins (because they all sclerose or go hard) towards the end of treatment.  He said that my hardened vein may open up again but not in time to be of any use to me for chemotherapy.  He didn’t seem to be keen on a PICC line and I asked him why? Was it because it might get infected? He said it was just another procedure I’d have to go through if we decided to go down that path. Many cancer patients are subjected to many procedures so it is sometimes wise to minimise these if they are not really necessary.  I felt that I’d been subjected to relatively few procedures compared to most cancer patients.

I’d had a blood test on the Friday of the week before so I asked him how my neutrophils were as that was really the only thing I was interested in.  You might need to read the chemotherapy – round 2 post to brush up on your neutrophils. My neutrophils had been 0.5 prior to the second round of chemo.  0.5 is very low but we proceeded with chemo and I managed to stay well in terms of not developing a fever or an infection.  My haematologist had said that sometimes the bone marrow (where neutrophils are made) gets a bit of a shock after the first chemo and then recovers so I thought the level this time might be better.  Well, it was a bit better; 0.7 – still very low.  He said they might be higher today and we’d check them again just for fun.

My haematologist also told me that he’d be away for the next few weeks so I’d have to see the doctor who was covering him prior to round 4 and that I’d see her on a Friday instead of a Monday. He also reminded me of the PET scan I’d be having after round 4. I hadn’t forgotten.  He explained that it would be done towards the end of the two weeks after treatment.

I went downstairs to the chemo ward and realised I’d forgotten to sign in to the hospital. Chemo brain. Jenni got the paperwork from the front desk and I signed it so I could be admitted for chemotherapy. I was in seat number 1 and Karine, my chemo buddy had it all sorted so we were next to each other. Karine was accompanied by her mother that day. We chatted about the past fortnight and how the previous dose of chemo had affected us. Karine was happy to hear that round 2 had been much kinder to me than round 1.

We then went through the usual routine of soaking my hands and forearms in hot water to make my veins more prominent.  The first attempt was not successful so the task was handed over to the charge nurse.  I’m sure she didn’t like me telling her what vein to go for.  I could feel a nice big, juicy vein on my forearm and I was telling her to go for that one. I remembered my days as an intern; I must have inserted hundreds of intravenous cannulas, and from experience I knew the veins you could feel were easier to cannulate than the ones you could see.  She didn’t like the vein I was suggesting because she couldn’t see it so she went for a big vein in the front of my right elbow.  That was going to make texting annoying, having to keep my arm straight.  But she missed, or went in and out of that one. This was not going well.  Two failed attempts and I didn’t think my veins were that bad. Maybe a PICC line was a good option. Fortunately the third attempt on the outside of the left wrist was successful.

Blood was taken and sent to pathology to see if my neutrophils were higher than 0.7. Nope, they were lower -0.5. A quick phone call was made to my haematologist to see if we were proceeding with chemotherapy. Of course we were! And I still wasn’t qualifying for bone pain causing neulasta (the injection which makes your bone marrow produce more neutrophils).

The highlight of the day was the realisation that I could order a hot lunch instead of having the same old sandwiches week after week.  Not that there’s anything wrong with sandwiches but I was feeling sick at the thought of seeing them. I think it’s just the sameness of it. So Jenni enquired with the ward clerk and a nice hot lunch was delivered. Much more appetising than sandwiches. I can’t remember what it was and I didn’t take a photo of it this time.

The rest of the day was pretty uneventful. There was some pain in my arm with the infusion of the last drug so it was slowed down a bit and a heat pack was applied.  I was really hoping the vein didn’t sclerose this time.

The week following chemo was actually not too bad.  I spent Wednesday in bed, so it hit me a bit quicker than round 2 when I spent Thursday in bed, but this time, I was feeling quite good on Thursday. Friday was my mum’s birthday so Jenni, my mum and I treated ourselves to a pedicure, went to my daughter’s school swimming and then went out for lunch. Uncle Noof (former fav uncle) also came out for lunch.

On Saturday, I had my first social outing as a scarved up cancer patient.

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The fabulous Baker sisters.

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Oops. I almost forgot, there was a wedding, the youngest Tomo cousin tied the knot. It wasn’t about me having cancer and my first appearance in a scarf.

On Sunday, I noticed the vein that had been used to deliver the chemo was becoming painful and had gone hard. So that’s two out of three veins sclerosed. Not good. It wasn’t excruciatingly painful but it was certainly annoying and enough to interfere with sleep at night.

On Sunday, which was father’s day, I also drove my family to the airport for their 17 night holiday in Bali, a holiday I was also supposed to be going on but had to cancel because of cancer. On the way home from the airport I was just thinking ‘Fuck cancer’. I wasn’t sulking because I’d missed out on a holiday, I was just pissed off that cancer had robbed me of the opportunity to spend time with my kids on a holiday. I know, it’s not a big deal in the grand scheme of things but it was how I felt. I drove to Jenni’s house for a father’s day dinner with my dad and then went home looking forward to a sleep in, but I woke up at 6:45 am on Monday morning, and the next few mornings.

On Monday I was feeling tired again. I did some weeding but found myself back on the couch quite often, having a rest. My hair was shedding quite a lot and given that I was wearing scarves everyday, there didn’t seem much point in having the short hair that I had, so I decided it was time to shave it off. On Wednesday 4th September, I went to Jenni’s house for dodgy hodgy chemo cuts 8, 9, 10, 11 and 12. The rest of that first week without children, prior to chemo round 4, was spent reliving my youth (minus the alcohol) with a new found social life, catching up with friends and going out for dinner. I did a bit of weeding, tidying up around the house, had a massage and even went for a few walks. I spoke to my daughter in Bali via FaceTime and I was content that she wasn’t missing me as during one call she was more interested in picking a flower than talking to me. It was definitely a pleasant week with nobody to worry about except myself.