40. Chemotherapy – round 7……and an ode to Ev

Monday 21st October to Sunday 3rd November, 2013

I turned up to my routine pre-chemo appointment with my haematologist with a bit of attitude this time. I walked in, sat down in the chair and said “I need answers. I need to know what the future holds for me.” I left the last appointment with him a fortnight earlier really having no idea if he thought my PET scan results were good, or if he actually thought they were bad because I didn’t have bulky disease and the scan wasn’t negative.

I think he was a little surprised by my assertiveness. He turned and faced me and looked me in the eye. I asked him a lot of questions about whether he thought the PET scan at the end of treatment would be negative, what would happen if it wasn’t, what my chance of relapse was and what sort of treatment would be involved if I relapsed.

He said if the PET scan after 4 rounds of chemo had been completely negative he would be “super bolshy” (I think that means arrogantly confident or something like that) about the PET scan at the end being negative. Since that PET scan wasn’t negative, he said he was “bolshy” rather than “super bolshy” about a negative PET scan at the end. If the PET scan is not negative, I will probably have radiotherapy to any spots still showing activity, as long as they are not widespread.

If the PET scan at the end is negative, does that mean I am cured? He said he hoped so, but of course there are no guarantees.  I will continue to see him every three months initially to see how I’m travelling. I had asked him at one of the very first appointments about how we would know if I relapsed. I assumed I’d be having fairly regular PET scans but he told that wouldn’t be the case. Apparently they do that in America, but not here. Obviously it comes down to money. If I relapse with lymph nodes involved in my neck, armpits or groin, I can feel them, but if it’s in my chest or abdomen, I can’t feel those lymph nodes, so the lymphoma could just march along with me completely unaware….unless I get itchy again. I didn’t really go into it too much at this appointment, but diagnosing a relapse is definitely something I’ll go into in great detail if I am given the all clear after the next PET scan.

If I am given the all clear, there is about a 10% chance of relapse in the first two years. After two years, the risk of developing other cancers is actually higher than having a relapse of lymphoma. The risk of other cancers is higher than the general population because of the chemotherapy I have received! Good chemo for the good cancer. It might cure the lymphoma but then give you another cancer. Awesome! If I do relapse, the treatment is likely to be a stem cell transplant. He was a bit hesitant to go into too much detail or commit to what sort of treatment I would have, as any treatment for a relapse is likely to be performed in Melbourne under the care of a different doctor.

I left the appointment feeling a little clearer about his thoughts on my prognosis. He doesn’t have a crystal ball so I guess I couldn’t ask too much. It seemed to me that a negative PET scan at the end of treatment was the most likely outcome but the possibility of a relapse and how that might be detected was a concern.

I went downstairs to be hooked up to chemo and was back in the naughty corner again. Getting number 7 under my belt was a bit of a milestone as it would mark the first time I had less chemo ahead of me than behind me. The nurses informed me that my neutrophils were 0.6. I was neutropaenic again having not G-CSF after the previous round of chemo. I wasn’t even the slightest bit concerned that I wouldn’t be having chemotherapy that day but the nurses told me they’d have to run the results past my haematologist to make sure he was happy to proceed. I was OK with that. They were just following protocol.

Of course, my haematologist was happy to proceed but he also told the nurses that I would now be having G-CSF after every round of chemotherapy. I guess I had earned it now, being persistently neutropaenic. My lazy bone marrow hadn’t realised that it needed to work a bit harder so it would be getting some help. My chemotherapy infusion was otherwise very uneventful. Given my episode of vomiting after the last round, which I forgot to mention to the haematologist, I made sure I was sent home with some extra anti-emetic drugs.

The fortnight after chemotherapy was fairly uneventful too in terms of the effects on me. I spent Tuesday, Wednesday and Thursday in bed feeling completely drained, but there was no vomiting which was very fortunate. I hadn’t spent three days in bed after previous rounds of chemo. I had been told the tiredness would be cumulative and it felt like that was exactly the case.

It was in this fortnight that I started the dodgy hodgy chemo cuts reveal challenge and formed ‘The Good Team’, which was soon after re-named ‘The Good Tittie Team’. So it was quite fortunate there were no particularly nasty after effects as I was very busy fundraising and blogging.

I had to go back to the hospital on Monday 28th October for a routine flush and change of dressing on my PICC line. I was fortunate to have an earlier than usual appointment that day which meant I could get out in time to pick up my daughter and her friend from school and take them to gymnastics. This has always been left to the parents of my daughter’s friend, which they have been very happy to do and for which I am extremely grateful. They also usually take my daughter back to their place for tea and then deliver her home, fed and happy. Thank you Tash and Richard! The support from the school community really has been amazing. Although taking my daughter and her friend to gymnastics is really no great feat, it is important to me that I do simple things like that in the ‘good’ weeks as I know my daughter hates the ‘bad weeks’ when I spend a lot of time in bed and everyone else runs her around to school and other activities.

On that Monday, I developed quite severe bone pain, due to the good old G-CSF. It was a strange, throbbing pain around my hips and sacrum. It was constant but made much worse with any change in posture or position, like moving from standing to sitting or vice versa. I also had a band of throbbing pain around my chest when I moved. It was quite a bizarre kind of pain but fortunately it settled considerably after that day. I didn’t take anything for it. As I later told a nurse, I just sucked it up.

This fortnight was also the first time I was asked what once would have been a very confronting question by a complete stranger. I was in Adairs, doing a spot of Christmas shopping (taking advantage of the good week and getting organised early) when a man who looked like he was in his 70’s came up to me and said “Excuse me, have you got cancer?” I thought it was really quite odd to ask that question to a stranger and I did wonder about the state of his frontal lobe (for the non-doctors reading, people with frontal lobe problems are disinhibited and often socially inappropriate) but I wasn’t upset or offended. I actually thought it was pretty funny that he’d just blurted it out so I smiled and said, “yes, I have cancer”. He then told me that his wife had died of cancer about a year ago. I think my behaviour then was even more inappropriate than his! As I was in full-on fundraising mode, I thought “Hmmmm, I could get a donation out of this”. I asked him what sort of cancer his wife had and he said “ovarian”. Bingo! A women’s cancer. So, I told him about the walk to end women’s cancers that I had signed up for but he just said “Oh, good luck with everything” and walked off.

I mentioned in the previous post that my hair loss had not been quite as advanced as I had expected it to be. I think every chemotherapy regime is different and every person is different in their response to it. My hair had thinned considerably, so there was no question it had to be shaved off,  but I had very thick hair to start with so I was far from completely bald. The hair that was there was even starting to grow so I really was starting to look quite a sight with very thin hair exposing much of my scalp. I thought I was looking like a balding old man. In fact, I thought this hair style was quite similar to that of my good friend Ev! I promised Ev that if he joined ‘The Good Tittie Team’ or made a sizeable donation, I would dedicate a blog post to him. Everyone loves a blog mention! Unfortunately he couldn’t join the team due to work commitments (whatever!) but he did make very generous donations to both Lisey and myself. So Ev, this is your time to shine……sort of, because it won’t all be nice.

I’ve already mentioned Ev a few times throughout this blog. He is a high school friend and one of the very few high school friends I have kept in contact with in the now 21 years since we finished. Ev was a cycling fanatic in high school; he still is but age has slowed him down a bit. He used to call cycling hammering, so I bought him a hammer, and got it engraved, for his 21st birthday. I wonder if he still has it. As we got older and our lives got busier, the face to face catch ups became less frequent but there were still fairly regular phone calls and text messages between us.

After I was diagnosed with cancer, Ev stepped it up and really has been a tremendous friend and support to me. When you’re diagnosed with cancer, you really find out who your true friends are and Ev is definitely one of them. There have been many text messages and phone calls, a good percentage of which haven’t been responded to but he hasn’t given up on me! He has visited me several times, once straight after finishing night shift and he even brought dinner! He did confess however, that his beautiful wife prepared that meal, not him. That visit was the day before my PET scan so that Shepherd’s Pie became the celebratory meal when the results were good. We went out for brunch that day and I remember the day well as I talked like a woman possessed and I don’t think poor Ev got a word in, but he sat patiently and listened.

Sadly Ev’s father passed away very recently. Fortunately for me, the funeral was in my good week, so I was able to attend. There were at least seven people, and a few partners, from high school at that funeral, which I think says a lot about Ev. I told him that to have that many high school friends there, so long after finishing high school, really is testament to the great guy that he is. I’d say Ev’s wife is lucky to have him but I actually think he’s luckier to have her!

Sorry Ev, but it can’t all be nice. With any glowing reference there needs to be a bit of a slap in the face too. When I told Ev I thought my current hairstyle was resembling his, I asked him to send me a photo of himself so I could put it next to mine on this blog. To my great surprise, he did send me the requested photos with the accompanying text “Very uncomfortable doing this. It’s just for u and that fucker cancer”. I was also very surprised to learn that these were not Ev’s first ever selfies. So here is Ev and myself sporting our very similar hairstyles.

The front on view……..

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And the more telling, top of the head view……..

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Fairly similar I think (although Ev carries it off much better), so I have dubbed that hairstyle of mine ‘The Ev’ as a tribute to my good friend. After taking that photo, I shaved all my hair off again as it really was looking very average. Quite vain of me!

So that was the end of the fortnight after chemo round 7. Seven down, five to go wasn’t sounding too bad.

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39. Chemotherapy – round 6……the half way mark

Monday October 6th, 2013

I’d only been discharged from hospital the day before and I was back there again for another hit of chemotherapy. I hadn’t seen my haematologist since 26th August as he’d been on holidays. I was looking forward to seeing him so I could ask him what his opinion of the PET scan result was. I was fairly certain it wouldn’t be as overwhelmingly positive as his sympathetic female colleague. Jenni came into the appointment with me. She likes to sit in on them when she can as she finds my haematologist’s lack of sympathy quite entertaining.

I filled him in on what had happened over the last month or so, including the insertion of a PICC line and the recent hospital admissions. I told him I was feeling stupid turning up to hospital and not having a fever and asked him if I should bother coming to hospital if it happened again. His advice was to take some panadol and see if the temperature settled. Quite funny really, as my standard advice when people complain to me about any sort of illness is “take a couple of panadol and have a lie down.” I told him I had really felt quite unwell when I was admitted the second time and that I was surprised I didn’t have a fever in hospital. He said there was nothing sinister on my blood tests.

I then told him about the night sweats and I’m pretty sure that made his ears prick.  Hmmm, could that be B symptoms? (In case you’ve forgotten, B symptoms are fevers, night sweats and weight loss in people with lymphoma, and are associated with a slightly worse prognosis). Surely not so soon after a nearly negative PET scan, and I didn’t have B symptoms when I was diagnosed. It was enough for him to get me on the bed and examine me. He felt my neck and abdomen and listened to my chest and reported that everything looked pretty good to him. That was comforting.

I asked him if he’d seen the results of the PET scan and he said he had. I asked him if he thought the results were good and he said “they’re OK”. I then said “you said you expected it to be negative and it wasn’t. What does that mean?” His response was “it’s not worth splitting hairs at this stage”. That was not so comforting. I didn’t really know what he meant by that but for some reason I couldn’t be bothered going in to it.

I asked him if I would be having G-CSF after this round of chemotherapy and he said “No”. I asked him why not, not that I wanted it, I was just interested in his reasoning. He said there was no point stirring up the bone marrow. I wasn’t really sure what the meant but figured I just had to be severely neutropaenic to ‘earn’ the G-CSF, and since I’d had it after the 5th round of chemo, I wasn’t neutropaenic going into this 6th round.

I also asked him if I was actually going to lose all my hair. I was now over 2 months into chemo and although my hair had thinned considerably, I was far from bald, and some of my hair was actually growing. I took my scarf off and showed him how much hair I had. He asked if he’d told me I’d lose my hair and I reminded him that he definitely had. It was pretty much the only side effect of chemotherapy he had been certain about. No mention of nausea or extreme fatigue.  Oh, he did also mention the cessation of periods. He conceded that I probably wouldn’t lose all of my hair.

I wasn’t annoyed that I’d shaved my hair, because I had to do that with the amount that was falling out. As strange as it might sound, I was actually a bit disappointed that I wasn’t going to go completely bald. It’s not something many get the opportunity to experience, not that everyone would want to, but if you’re going to lose most of your hair, you might as well lose it all! Also, a lot of people who have lost their hair due to chemotherapy find that it grows back completely differently, like my sister-in-law, whose hair grew back completely straight (I was going to say dead straight but that could be inappropriate). So, I was interested to see how my hair would grow back and I didn’t know if the fact that it hadn’t completely fallen out meant it would just grow back the same. I was hoping for completely straight regrowth but actually thought I might just get another twist of the knife with it growing back grey.

After the appointment with the haematologist, I headed downstairs for chemo number 6. The half way mark. Quite a milestone. Although I didn’t really feel that I would be half way until I got through the effects of chemo, it certainly was a good feeling to be able to start counting down the remaining sessions. I didn’t feel I could do that when I had more ahead of me than behind me.

There was nothing particularly remarkable about session number 6, which is good. No threats of delayed chemo, most importantly. Karine wasn’t there as she’d had her last session a fortnight earlier, and Jenni and I didn’t find a new friend that day.

The after effects of round 6 were fairly kind initially. Wednesday was the worst day, as it usually is, but as far as Wednesday’s go it was pretty good. I dragged myself out of bed before 5 pm and even managed to take my daughter to and from her singing/dancing/acting class, something I usually leave to my mum. I had  lovely dinner, cooked by somebody else and went to bed early looking forward to a good nights sleep and the possibility of feeling relatively normal the next day. Unfortunately, that was not to be. I woke up at 4 am and started vomiting! Now I know that nausea and vomiting are pretty standard side effects of chemotherapy, but this hadn’t happened with the previous five sessions, so why was it happening now? Just when it looked like I was going to get off lightly with the after effects!

I didn’t know if the vomiting was due to the chemotherapy or I had just been ‘lucky’ and had a bout of gastro. It didn’t matter really. What I was hoping would be a good Thursday was a day spent in bed feeling completely and utterly drained. Nausea and vomiting is not pleasant at the best of times, but I think when you’ve had chemotherapy and you have virtually no reserve, it hits you even harder.

I think the fortnight after chemo number six was one of the hardest. Perhaps it was cancer’s way of saying “don’t be too excited about being half way through your treatment!”  I was completely physically and emotionally exhausted and my catchphrase became “drained is the new normal”. I was feeling guilty about not being able to do things with my 6 year old daughter and because I felt crap, I had no patience and felt like I was constantly yelling at her and telling her off. I felt like she was suffering too and that was not fair. Although having a 20 month old son is bloody hard work when you’re going through chemotherapy (and even when you’re not), the blessing is that they are (hopefully) too young to remember anything. I do feel guilty about neglecting him too, and I’m sure he thinks my mum is him mum at the moment, but he is happy and I’ll make up lost ground in 2014.

Sally (high school friend, member of ‘The Good Tittie Team’) came over on the Saturday to entertain my children, to give both my mum and I a break. The girl is a star and I can not thank her enough! She cleaned up the playroom, brought dinner and entertained a very busy, young boy. By the time she left in the afternoon, I thought I was starting to feel better but then I performed the rather simple tasks of feeding and bathing my son, and I was exhausted. It really was quite frustrating. Cousin Sonya came for a sleep over that night, to catch up and to let me sleep in on Sunday. My darling cousin has been so supportive during this adventure.

I also discovered a new talent in this fortnight. That of making people cry. Well, it’s actually not a new talent if I think about it. From what I have heard, there have been a few tears shed by people reading this blog but I think that was mostly at the start so perhaps I was rediscovering this talent. I took my daughter to swimming on Saturday morning, and a good and honest friend told me I looked like crap. I told her about what had been happening and my physical and emotional exhaustion and I started crying. Then she started crying. On Sunday something else set me off and there were tears again. Sonya also started crying and then Jenni, who had popped in for a cup of tea, started crying too. The three of us were standing in the kitchen crying, so then I started laughing and wanted to take a photo of us all crying.

At the end of an exhausting fortnight, I was feeling like I needed to book some sort of holiday (local of course, because I wasn’t allowed to go overseas). I needed something to look forward to. The problem was, this cancer and the effects of treatment were so unpredictable. I could book something and may not be able to go because I might be in hospital with a non-existent fever, or I could just be so drained that it when it came time to go, I couldn’t be bothered. There just didn’t seem much point.

The fortnight ended on a nice note with my daughter writing a short but beautiful message for me. I felt I’d been so short tempered with her and was neglecting her, but I guess it just proves that a mother’s and daughter’s love is unconditional. Six down, six to go!

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36. Chemotherapy – round 5

Monday 23rd September, 2013

It was the school holidays and Jenni (fav sis) wasn’t able to accompany me to chemo that day. She usually works on Tuesdays but had to work on Monday instead that week. My friend Simone knew someone who had Hodgkin’s lymphoma about 10 years ago and she had told Simone that she wished she’d taken different people to chemo with her, rather than the same person every time, so more people could see what it’s actually like to be given chemotherapy. (I actually thought it might be nice to take a different person to chemo each time so they could have the chemotherapy instead of me! But my PET scan results probably wouldn’t have been so good if I did that).

Simone was the first person I thought of when Jenni wasn’t able to be my chemo friend that day and after confirming her mum could look after her two children for the day, she accepted the job. Poor Simone definitely drew the short straw, however. It was a long day!

I met Simone about 15 years ago, maybe more, when we worked together at the good old Grand Hotel. We travelled overseas together for a few months in late 1999/early 2000 and got up to a bit of mischief. We spent New Year’s Eve on the streets of Edinburgh at “Hogmanay” which is one of the biggest New Year’s Eve events in the world and was a pretty awesome place to welcome the new millennium. We actually had more fun the next night at a little pub, chatting to some locals wearing kilts. And we found the answer to that question everyone asks – ‘do they wear underwear under their kilts?’ No, they don’t! Well at least the one we were talking to didn’t. I think I took a photo to prove it. Simone is a very caring, generous, sympathetic and empathetic person and has been a friend I have been very fortunate to have during this adventure. She put together a cancer show bag before I started chemotherapy, made me a bracelet with a ‘tree of life’ charm on it, has been to my house to cook me dinner (and drink wine), delivered many meals, and called/texted often. She was also the first one to start investigating hats and scarves.

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The bracelet Simone made for me.

Simone sells bracelets too by the way, so if you want to order one, let me know. And you can still order those stickers from http://www.myracecarsticker.com.au I am determined to get some orders for something!! I think I’m going to go for an FUC sticker, a little more subtle than F##K CANCER.

Back to the chemotherapy. Simone picked me up from home and we drove into the hospital. First stop was the chemo ward to have a blood test to see how those neutrophils were holding up. There was no visit to the haematologist prior to chemotherapy this time as my usual haematologist was still on holidays and I had seen the covering haematologist on Thursday for the results of that PET scan. Simone had been instructed by Jenni to make sure a hot lunch was ordered for me and she completed that task with stealthy efficiency.

That day was a very special day as it was Karine’s (my chemo buddy) last chemotherapy. I was definitely jealous, but very happy for her. I wasn’t seated next to Karine and that was not going to be acceptable for her last session.

That day was also the day I had a PICC line inserted so after the blood test, the next stop was the radiology department next door. I have mentioned in a previous post that PICC stands for Peripherally Inserted Central Catheter so it is basically a catheter that is inserted into a peripheral  blood vessel (i.e. a blood vessel in a limb) and fed up to a central vessel (i.e. a large vessel near the heart). The advantage of a PICC line is that it can be left in for several months. It can be used to deliver things (i.e. chemotherapy) and also to take blood for blood tests, therefore preventing the need for multiple stabs. Also, the delivery of chemotherapy to a large, central vein would save my poor peripheral veins from further trauma and sclerosis.

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This illustrates where a PICC line is inserted and the tip in a large vessel near the heart.

I first met the nurse who would be assisting the radiologist who would be inserting the PICC line. She was lovely. Simone told her I was doing a blog and I wanted some photos of the PICC line going in but she was a little uneasy about that. I also thought it probably wasn’t wise to have someone photographing the procedure. We didn’t want to make him nervous and have him pierce a big central vessel or my heart! So we settled for a few photos of me lying on the table ready for the PICC line to go in. The nurse asked me which arm I’d like it in and I chose my left arm since that was the arm that already had all the stuffed veins. Might as well keep the right arm good.

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Ready for the PICC line.

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The radiologist came in and introduced himself. Also lovely. He was the husband of a work colleague so we chatted about my work and also about my radiologist friend, who I assume had lined him up to perform this procedure. He explained what the procedure would involve; injection of local anaesthetic which would be the worst part, a small incision, insertion of the catheter, threading it up to a large vessel near the heart and confirming its position radiographically. The local anaesthetic was inserted and all of a sudden I felt a hand rubbing my right shoulder. It was the nurse. Although it wasn’t really necessary, I did think it was such a nice thing to do. The local anaesthetic did sting but it was nothing compared to a bone marrow biopsy!

The radiologist made the incision and inserted the catheter. He made a comment about me having royal blood because it was very blue. Perhaps I really am a princess! The catheter was threaded up the vein and the correct position of the tip was confirmed. A dressing was applied and that was it. It was all over with pretty quickly.

I returned to the chemo ward ready for the chemo to be delivered through my new PICC line. I was happy to find that I had been moved and was now next to Karine, so we could chat all day during her last chemo session.

My blood test results were back and I was informed that my neutrophils were 0.3. Wow! That was an all time low. Still, I wasn’t concerned because I was ‘well’ so I would be having my chemotherapy. The nurse who was looking after me said she’d have to check with the haematologist before hooking me up to chemo. I understood that but I was a little nervous as my haematologist was still on leave. I knew he would not bat an eyelid and tell them to give me the chemo but the woman who was covering him (you know the one who looked me in the eye and asked “how are you?” and who was so very positive about my PET scan results) was nice! I was just hoping she was only nice to people and not to cancer and would tell the nurses to give me my chemotherapy!

The head nurse came over and told me I wouldn’t be having chemotherapy with neutrophils of 0.3. I told her I’d had chemo with neutrophils of 0.5 and 0.3 wasn’t that much lower than 0.5. She said 0.3 was very low and my chemo would be delayed for a week at that level. No chance! I had the rest of the year mapped out in terms of bad weeks (chemo weeks) and good weeks (non-chemo weeks) so throwing that out by a week would mean I would be having chemotherapy on the Monday before xmas and xmas day, being a Wednesday, would be a write off. It would also mean that the treatment for this cancer would extend into 2014. That was not going to happen. 2014 was going to be a good year.

The nurse who was looking after me came back and told me they were still waiting for the covering haematologist to call back. I was happy to wait. About 10 minutes later, the nurse said the haematologist hadn’t called back so they had spoken to another doctor who sometimes covers my doctor when he he’s away, and he said I should have an injection of neulasta (a drug that makes the bone marrow produce more neutrophils) and come back on Wednesday for another blood test to see if my neutrophil level had improved. I wasn’t happy with that so I told the nurse I wanted to wait for the female haematologist to call back to see what she said.

My haematologist would be back at work the next morning at 8 am so I had already decided I would be calling him at 8:01 am to get him to instruct the nurses to give me chemotherapy on Tuesday if it wasn’t going ahead today. Fortunately the female haematologist called back and told the nurses to give me chemotherapy. She also explained to them the importance of not having delays in chemotherapy in the treatment of Hodgkin’s lymphoma. I would also be earning an injection of bone pain causing Neulasta this time. The nurses apologised but I was not angry with them. I understood their concern about giving me chemotherapy with such a low neutrophil count, but I also knew I should be having chemotherapy that day.

When re-telling this story to an old colleague recently, we laughed that I was possibly becoming a drug addict. Nothing was getting in the way of me having my drugs that day. It’s a little odd, because these drugs make me feel like crap and I wish I didn’t have to have them but I do not want to prolong this adventure by a single day.

So, I was hooked up to chemo through my new PICC line and despite a very late start, it all went smoothly.  Jenni came to visit on her way to work to wish Karine well on her last chemotherapy, (and to check that Simone had ordered my hot lunch). I am so glad I met Karine, although in a way I wish I’d never met her as both of us having cancer is the reason we met. The chemotherapy sessions were almost fun with Karine there. She was a breath of fresh air and made Jenni and myself laugh often with her honesty and sense of humour. We met her mum, her friends and her husband, as she had a different ‘chemo friend’ each time, and we learnt a lot about her through the stories she told us. Karine is also participating in the weekend to end women’s cancers but unfortunately she is not a member of ‘The Good Tittie Team’. I guess we’re all on the same team really, raising money for the same cause.  I wish Karine all the very best in her life after cancer. It won’t be the same but she’s a strong, happy person and she will be fine. We’re Facebook friends now and I think we can call ourselves real friends too. I am sure we will keep in touch.

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Karine and I in our gold class chairs, in the naughty corner, hooked up to chemo, for the very last time for Karine.

Simone and I didn’t leave until nearly 5 pm which is the latest finish I have had. It was a long day but it was another chemo down. Seven to go.

 

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.

15. Chemotherapy – round 2

Monday 12th August

For a while there, I didn’t think I’d make it to round 2, but I did.  I was greeted by the nurse who I’d seen when I was admitted the week before and I explained to her that it seems it was a reaction to maxolon.  I was escorted to my chair in the naughty corner and was disappointed to see that I had been separated from Karine, my newfound chemo buddy who I’d met a fortnight ago.  Did we talk too much?  We vowed we’d make sure we were next to each other next time.  She only had three more sessions after this one.  I still had 10 (all going to plan).  If I sound jealous it’s because I was!

A nurse put an intravenous cannula in (got it in first time) and took some blood to be sent to pathology.  I then went upstairs to see my haematologist.  It was a pretty quick appointment, which commenced with me saying, “I’m becoming a bit of a handful aren’t I?”  I can’t even remember what his response was but I don’t think he agreed.  Very polite.  He asked if my itch had gone.  I said it was better but not gone.  I told him I was pretty sure the lymph nodes in my neck were smaller.  He felt them but didn’t say anything.  Would he even remember what they felt like three weeks ago?  I asked a few questions to clarify things some of the nurses had told me.  Can this chemo regime be given every three weeks?  One of the nurses told me it could but that I was probably getting it fortnightly because I’m young and fit.  I didn’t think that was right.  He confirmed that saying she had obviously got her regimes mixed up.  Am I supposed to have antibiotics for viral respiratory tract infections?  One of the nurses told me I need to have antibiotics straight away to prevent a secondary bacterial infection.  That one really didn’t make sense to me.  Having antibiotics for a viral infection pretty much ensures any secondary bacterial infection will be resistant to those antibiotics, which cannot be good in someone with a weakened immune system.  He told me we didn’t need to be silly but needed to treat any bacterial infection early.

He asked if I’d had a blood test that morning.  I said I had and asked if he had the results.  He didn’t have the results and he said something along the lines of that not being an issue because I was having chemotherapy regardless of what the blood tests showed because I was well.  The most important blood test was that which measured my white cell count, in particular my neutrophil count.  Neutrophils are one of several types of white blood cells in our body that fight infection, particularly bacterial infections.  Normal counts are between 2-8.  The nurses had told me they don’t give chemotherapy if the count is less than 1.5.

I went back downstairs for chemotherapy and soon after someone slipped a piece of paper into the basket on the trolley next to me and said “Here are Melissa’s pathology results”.  Of course, I had a look at them. Doctors always look at their own test results. Neutrophils 0.5!  That is low.  I let out a chuckle and said to Jenni, “Ooh, the nurses are not going to like that!”  I told the nurse next to me and she asked if my doctor knew.  I said he didn’t but that I knew he wouldn’t care and he’d say I’m having chemotherapy anyway.  She asked another nurse to give him a call and as expected he wanted to push on with chemotherapy.

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This is what neutrophils look like.

My haematologist popped down a bit later to discuss my neutrophils, which in his words were “a little low”.  “A little low?” I asked.  “Almost non-existent”.   He didn’t think so.  I think zero would be considered low in his books.  He explained that sometimes the first chemo is a bit of a shock to the bone marrow and then it realizes it has to work a bit harder but if my neutrophils were still low before the next chemo, I’d need nuelasta (or G-CSF, granulocyte colony stimulating factor).  This is an injection that stimulates the bone marrow to produce more white blood cells.  I was also informed that in young people (that’s me!) it can cause pretty bad bone pain.  The good news just keeps on coming!  Go you good cancer!

The rest of the chemo session was pretty uneventful.  The nurses snuck through the first three drugs without me realizing and the fourth one was up before I knew it.  That one is infused over 1.5-2 hours.  It had to be slowed down initially as it was stinging but they sped it up again and I was out before afternoon tea.  I had a lovely nurse looking after me for most of the day.  She usually works on the ward but was helping out in the day infusion centre that day.  She was also the nurse Jenni had spoken to when I had my ‘bad day’. She said I needed to book something like a girls weekend in the near future so I had something to look forward to.  Sounds like a bloody good idea to me!

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OK, those quotes are a bit too deep for me so I won’t finish on that note.  I’ll tell you about Bali.  I mentioned in an earlier post that we had a family holiday booked at the beginning of September. My haematologist advised me not to go. Initially I thought I’d still be going, maybe for a week instead of two.  I thought if I got sick over there, I’d just hop on a plane and come home.  When I was sick after the first round of chemo, it occurred to me that if I was sick, I would actually be sick and possibly not capable of just going to the airport and jumping on a plane.  So, at that point, Bali was off for me. But then I recovered and felt pretty good, almost normal, in Queensland, so I was going to Bali again.  After turning up for round 2 of chemo and finding out how low my neutrophils were, common sense prevailed and I decided it really wasn’t worth taking the risk of getting sick over there.  With virtually no immune system, the risk was high. My husband was still keen to go with the kids and I started thinking that two weeks at home with no husband and no children sounded like a bit of a holiday too.  Oh, apart from a little bit of chemotherapy.

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