Cancer Returns

Yesterday I poked my head up from the cave I’ve been hibernating from Blogland in and said a few words. Today I’ve been wondering what my next words should be. I keep walking to the computer. Sitting down, then walking away leaving a blank screen. It’s quite unlike me, because normally if I’m having trouble deciding what to write I at least start with something because even if I start writing then delete a chunk, the process of starting gets the words rolling from my fingertips onto the screen.

Postscript: I’ve kept the first paragraph as evidence that I started it immediately after my previous post! I was finding this blog hard to write, so after writing a few paragraphs and walking away, life seemed to get in the way and it took a long time to get back to writing!

As you can see from the blog post’s title, I’m just going to get straight to the point. The recurrence of cancer is the biggest event in my life right now. I didn’t know whether to ease myself into blog writing a few light little blogs. But I’m a straight to the point kind of girl and ignoring elephants in the room is not my style. Even though I know a portion of you would not realise there’s a big cancerous elephant sitting in the room.

A cuter elephant than the one I’m talking about today! This was 2 weeks before finding out there was something amiss. We had taken the children to the Dubbo Zoo for the triplet’s 8th birthday.

Last year I went for a routine CT scan. I expected to be told I was still in remission. When I came into the office, my oncologist asked me how I was feeling. To be honest, I was feeling tired, wiped out and emotional and “just hanging in there” type of tired. But I didn’t tell him that, because I thought it doesn’t have anything to do with why I was in that room with him. After all, I’m a mother, I was teaching three days a week and 4th term is always busy. I also had a sore chest, but I’d had that last time we spoke, I had told him that this soreness in my chest would flare up every now and again. He sent me for a PET scan because of this pain and 6 months earlier we ruled out that there was no cancer, so he said I could put my mind at rest about that pain, it was probably just scar tissue. So after I said I was fine, he looked me in the eye and with a mild tone of surprise said, “Really, are you really doing well?” I should have realised that was the first sign that in fact he knew that below the surface I wasn’t doing well. Instead I just thought, “Gosh, I must be looking as tired as I feel.”

We looked at my CT scan and he indicated that there were two lumps on my lungs and he didn’t know what they were. (Retrospectively I’m fairly sure he had a pretty good idea…) He suggested we get another PET scan. His words were downplaying it, and when I was in the office, I was feeling positive that it was probably nothing. After I left, I realised that the oncologist’s tone was for more somber then his words. Plus he was in a rush to get the scan done. Radiation was surprised when I said that I needed the results in five working days, and then their faces turned grave and professional as they squeezed an appointment into a previously non-existent time slot. I started to get a bit worried.

At the time, I also was sidetracked by another urgent medical issue that revealed itself in the CT that also needed an appointment with a separate specialist which led to needing to organise a minor surgery around getting PET scans at the same time. It turned out to be a very stressful fortnight with dates changing for vavious appointments and surgeries. One particularly dramatic day I got mixed up with PET scan diets and pre-surgery diet (it’s not like I haven’t had enough surgeries, but I think I was just under so much stress) and I had a surgery cancelled and it had to be re-booked the following week. I was doing a short term teaching contract 3 days a week but I was needing to leave work for medical appointments. This upset me because I even though I knew this was out of control and the school was very supportive and understanding, I didn’t like being unreliable.¬† Having to write relief teaching notes which take me a very long time (maybe because I’ve done so many years of relief teaching I have innate desire to include enough detail) added to tiredness and general overwhelm. Eventually I had to give up the teaching contract, which broke my heart. I had long wanted to teach in that school, but I just couldn’t fit medical dramas and fatigue in with family life.

When the results came back, the PET scan unveiled that not only were the lumps on my lung cancerous, but the centre of my chest lit up showing active cancer cells, so we knew that the Thymic Carcinoma had returned as it was in the exact same spot. The cancer was now sprinkled all through my lymph nodes.

When the oncologist said that the cancer we were looking at was inoperable, my heart sunk into the pit of my stomach. I had been hoping that if it were cancerous surgery would remove the problem.

My oncologist outlined his recommendation for treatment. The catch was it was not going to be covered by Medicare, the government organisation that funds free/subsided healthcare in Australia. Well, Medicare funds you except if your cancer is considered too rare, I’ve discovered. Then, as it turns out, you’re on your own. I also have private insurance, but they also refused to pay for my treatment. We are fortunate that we had some money sitting in the bank ready to be used for another purpose. Alex made the instant decision that we would use that money so we proceeded with Plan A. It’s a relief that we have not needed to sell assets to receive treatment.

The treatment that I am receiving has plenty of reasons to be optimistic. I’m undergoing immunotherapy. It has had great results for a number of cancer patients, particularly lung cancer, which is good for me as the cancer is in my lungs. The immunotherapy I access is on the Medicare PBS for multiple cancers, just not for mine, since it’s so rare. Sorry to go on about this, I’m not trying to play the sympathy card, or ask for money, I just want people to be more aware of how hard it can be for the 30% of Australian cancer patients who have rare cancers. If you want to find out more answers, Rare Cancer Australia is a great website.

Keytruda Day! So far I’ve always travelled with someone.
After my first traumatic day with many failed cannula attempts, I’ve never been game to do it by myself, even though I use my port now. Alex always comes with me if there’s going to be news from scans. It’s always good to have two people listening and remembering big news. But seriously, this guy is my rock. He’s my favourite to have by my side.

Every three weeks I travel to Brisbane to receive a drug called pembrolizumab, (more commonly known by its trading name, Keytruda for those of us who are not skilled at pronouncing long medical words.) I receive it intravenously through my port. Well that was after the first treatment. 366 days earlier, all optimistic, I had removed my port. Because I had been in the doctor’s office receiving the bad news on the Thursday and then on the Monday was in Brisbane receiving treatment, there was no time to consider whether I needed the port again. After that first treatment after multiple bruises and far too much leaking blood as needles were unsuccessfully inserted it was obvious I needed to go in for surgery and have the port re-inserted again. However since that has happened treatment days have become a sinch since there’s no need to access my dodgy veins.

Collection of bruises from cannulas. I HATE cannulas!!!

Fast forward. I had four treatments and then a scan. For my 4th treatment I had to fly home alone without my family from the Philippines where we had been holidaying together with extended family to celebrate my brother’s 40th birthday. The scan results weren’t as good as I hoped. I had hoped that everything would have been shrinking. Instead, the main thymic tumour had not changed, which wasn’t bad news. Because it was stable I could continue with immunotherapy. (Plan B is a high dose of chemo. Definitely not my preferred option.)

In the Philippines with our family, my sister and family for my brother’s 40th birthday

The not so great news was that the lung cancer lesions had grown. The oncologist said there was a possibility that the growth was a rare case of “pseudo growth”. It’s a rare, but well documented, response that some people had to immunotherapy where the cancer gets bigger before it starts shrinking. Nevertheless because I’m relatively young and healthy, he recommended not taking any chances and proceeding straight to radiation. After treatment we had a long talk to a radiation doctor. We asked lots of questions and in the end we were planning on proceeding with radiation, but he took our case to be examined by a team of cancer specialists. The advice from that group was to proceed with treatment, have a scan sooner than usual and if the tumours have shrunk proceed with immunotherapy as planned. If the lung cancer has continued to grow, proceed with radiation. If there is any other activity or the thymic tumour has grown abandon immunotherapy, proceed to high dose of chemo.

My preferred option (apart from complete miraculous healing!) is to see that everything has started shrinking and that I can continue with immunotherapy. Despite the significant cost I have had minimal side effects, so my quality of life while having treatment is amazing. I can still function for my family, I’m doing a little bit of work and I’m out to go out and about without fear of having a compromised immune system and socialise or even worship with my church family. I feel so fortuntate to be reaping the rewards of all the brilliant minds who have facilitated such a user friendly cancer treatment so I’m praying that it will keep working until I’m in remission again.

 

 

 

Continue Reading

Hi! I’m Still Alive

Hi! I thought I should get on and type a blog and let you know that I’m still alive.

Caitlin and kids
Mothers Day 2018 with my precious children.

Which is something we flippantly say when we haven’t been around for awhile.

But when you have cancer, you don’t just flippantly say this. All of a sudden the fact that you are still alive is news. It makes you realise that we shouldn’t be flippant about how fantastic it is to be alive each day. Life is a gift that we receive each day when we open our eyes and we should put our heart and soul into living, especially when we have the privilege of living it with a healthy body.

I’m happy to report that I am living life with a healthy body. I am a cancer survivor. A cancer survivor! Woo Hoo! What a sweet label that is.

Since I discovered cancer last year, I have undergone treatment after having a thymic carcinoma tumour surgically removed. I then had radiation and chemotherapy as an insurance in case any microscopic cancer cells had lingered in my body. Since completing my radiation and chemo regime at the end of October last year, I’ve had 3 CT scans that have shown zero cancer in my body. I’m officially in remission and by the grace of God I am remaining this way.

I thank God for the medical and scientific brains that have discovered and refined radiation and chemotherapy and the healing powers it has brought so many lives. Even if the treatment itself can be brutal. I am grateful that for much of my treatment I had low side effects. Thank you to everyone who has been praying for my family and I. I have valued every prayer that I knew was prayed and those I didn’t even realise that were being sent up to Heaven on my behalf. To be prayed for by those who love you, even if they have never met you, is like a big warm comforting hug.

When I started the second treatment with the higher dose of chemo, I was told that I would need help for the duration of the treatment and beyond as I would be far too sick to function. I am so grateful this was not the case. We had lined someone up to help us in the home and with the children, an even though she did work a few times at first, which did help, even if things weren’t quite the way I had asked. Before long though the little millennial we enlisted soon signed out without a word and stopped answering phone calls. So, we were on our own for the most part. We were very grateful for every meal that was delivered,it was particularly a relief to have meals on chemo days and a couple of days afterwards when I was particularly tired. Our volunteer ironing lady who had helped out so much when the triplets were young quietly reappeared in our lives. We have family that stepped in and help out to fill in the gaps which made all the difference on those days when Alex and I couldn’t quite do everything. They also helped proved the emotional stability that our kids needed.

I was tired, I had an aching body quite often, ran temperatures, but thankfully never so high that it put me in hospital, and became quite a grumpy Mummy and wife quite regularly. I really wish I wasn’t so snappy, it was the hardest part of being sick last year, trying to regulate my unstable emotions, often just due to being so tired, while running a household with five young children. But at the end of the day, I’m so grateful that we made it through. I was able to pick children up from school most days, Alex did many of the drop offs because often I was just too tired to get out of bed, and would just get up to pack five lunch boxes before they scampered out to the car. Homework might have been a bit hit and miss, and we strategically dropped some of the after school activities (but even still, me and my covered bald head was often standing on the sidelines during soccer season last year!) but they arrived at school dressed and fed and able to function, and you realise that sometimes that alone is enough. In fact, it’s a triumph!

I am so grateful beyond measure of my amazing husband. He was such a rock of support throughout it all. It’s so good when you have a husband who can just get in and help out without making a huge issue about it. Alex is truly amazing and kept us all afloat last year.

The last round of chemotherapy really hit me for six. I was felt so sick and so tired that I could barely function. The four weeks after that treatment was the hardest of all, but all the more exhausting as it was November so we were doing all the things necessary for the end of school year. The children were tired from the end of school year and on edge due to all the testing at school. Then it was the blur of end of year activities and before we knew it, holidays had started and then Christmas was upon us. The holidays were tiring, but thankfully I was regaining strength, even enough to host Christmas, which I planned to do the year prior, and was very grateful that we managed to pull it off!

Christmas Dessert
Dessert on Christmas day

I was so relieved when school resumed though. I don’t know if I could have kept going even another week! But maybe that’s because I was hanging out for a particular day. Getting five kids ready for school with all the book covering, pencil naming etc. etc. is always exhausting, but even more so when your body is still recovering from a tumultuous year. In any case I was so grateful to be able to rest for a little bit during the day when I needed to and finally I stopped feeling exhausted all the time.

Early in February Alex and I made a long weekend for ourselves, sent the children out to stay on the farm with the grandparents, aunts, uncles and cousins (one of their favourite places in the world) and we flew to Melbourne for a romantic interlude to celebrate our 20th wedding anniversary that had passed in January. It felt like a reward for surviving last year and I lapped up the luxury of the whole mini-holiday. Maybe because I was feeling so relaxed, and also because the Australian summer was heating up, I decided to ditch the turban and start going out in public with my super short hair.

Alex and Caitlin Melbourne

Since then it has been the usual round of family life. We’ve been doing a lot of catch up appointments of all the things that were missed last year as well as regaining our regular routine and stepping up the children’s responsibilities. (Why is making children do jobs such hard work for ourselves?) I’ve begun working again with a contract job I’ve had with our local university for quite some time, and I’ve updated my teacher’s registration and dipped my toes in the relief teaching waters.

Since I’ve got over the effects of the cancer treatments, I’ve been able to focus on helping my back to recover also after my scoliosis surgery (which is when everything began). I’ve been seeing a wonderful physio and trying to be faithful at doing my exercises to regain back strength. I’ve been trying to increase my exercise in general to help with strengthening my back but it also helps improve your chance of long term cancer survival. My chest still hurts on occasion thanks to the sternoctomy last year, but everything has healed correctly and I’ve been warned I might always have a niggly feeling that will remind me that my breastbone was sliced in half.

Life has been trundling away keeping us all busy, and I never have got back into the pattern of blogging again. I contacted a blogging friend recently and made an off hand comment that I wished I had seen her more often since she had moved to a city closer to where I live. She tentatively asked how my health was as she had been worried this comment might have been linked to a final farewell. It made me realise that I need to apologise to all of you who have prayed and sent well wishes our way and have been wondering how we have been progressing.

I can’t believe it is the middle of the year already. Life really does fly when you are having fun! And what a delight that there has been so much fun in this year. It’s crazy how you can cherish life so much, while still being caught in the whirlwind of busyness and the frustrations of parenthood. I’m just grateful I’m healthy enough to be there for my kids, whether it’s listening to them chatter, giving them kisses and cuddles, making them groan as I wake them in the morning or annoying them with job requests and homework and piano practice reminders/ultimatums. Of course, the cuddles and the chattering is my favourite things to do as a healthy Mummy.

SaveSave

SaveSave

SaveSave

SaveSave

Continue Reading

How I am …. Really.

I have been so grateful of all the support that I have received since I published a post sharing how I had discovered cancer. I know many of you have been praying, sending good vibrations and encouragement to me. I am very grateful and am definitely feeling the love. It’s high time that I post an update on what has been happening. People keep asking how I am and when I answer, they look concerned and ask, “But how are you doing, really?” It’s nice that people are concerned for me, but this is awkward because normally I have shared exactly what is happening and don’t need to elaborate further. So this is how I am … really.

Great!!!

I have had moments where I have felt sick and tired, but especially now that I have finished the first round and have had a break for four weeks, that certainly helps me to feel great, really! ¬†Plus, this week has been very encouraging because I had a CT scan on Monday and my oncologist told me on Tuesday that everything was clear, there has been no spread of cancer. My doctors had not expected there would be, but even though they were just being cautious, it’s always good to hear that things are progressing as we want them to. My back is still healing, and not always comfortable, but the pain meds for this are decreasing and I can certainly feel improvements in that area.

In the last couple of months I have completed six weekly treatments of low dose chemotherapy. Over that same time I received 25 daily (weekday) treatments of radiation. Everything went so much better than I expected. I turned up on day one very prepared. I’d spoken to lots of medical professionals, I had read blogs and I had read some books. I was prepared. Which I’m very happy about because both the chemo and radiation nurses need to go through all the side effects, including worst case scenarios on that first day. I think if I hadn’t have heard it all before I might have been very overwhelmed and maybe slightly panicked and anxious. I decided early on that I was consciously avoiding worrying about what might happen. I thought it was common sense to listen and be aware of what might happen, but I had decided that when that happened I would deal with it. Which has saved me a lot time as I would have worried about nothing, as I had an unbelievably good experience. For starters, despite being told it would, my hair didn’t fall out! That was a delightful surprise! I’m still told it might, but I’m still grateful I didn’t have to shiver through the majority of winter with a bald scalp! I’m not as worried about losing my hair as I am of how it will grow back, whether I’ll lose my curls (which I love) and I’m desperately hoping it doesn’t come back grey because I’ve been proud of the fact that I’m over 40 with only a few silver threads that you have to look hard to find. Plus the whole growing back thing, it’s got to be more frustrating than growing out a bad haircut. But anyway, considering possible alternatives, the hair thing isn’t so bad, so I know that all will be well with my soul whatever the scenario.

St Andrews Cancer Care Toowoomba

Chemotherapy, for me, thus far, hasn’t been gruelling. Occasionally I have felt nauseous, but medication helps that very effectively. I haven’t always had the best nights sleep, mainly waking up in the early hours. Also had some mild medication helping there. In actual fact, because I had little side effects, chemo day was quite relaxing. It’s not often a Mum gets four hours to sit down uninterrupted in the middle of the day. Radiation also wasn’t so bad. It’s daily but most of the time it’s fairly quick. I would arrive, don a very unattractive blue hospital gown, go into the machine, let it do its job, (it doesn’t hurt at all), and then back home with a weekly appointments with the doctor and another one with a nurse. It’s all pretty streamlined.

I had a quick surgery the week before I began treatment to have a port-a-cath inserted so they didn’t need to use my rather useless veins. That has been probably been the most hassle in the end, in terms of pain. For some reason it really hurt, we got it checked out, and nothing was wrong, it was just sore and tender. ( I don’t regret it even still, I hate watching my tiny veins shrink after all the poking and prodding. I don’t think the years of IVF previously helped either.) ¬†Fortunately that has settled down since I’ve had a four week break in between treatments. I also was very tired by the end of the radiation treatment. This was to be expected, radiation has a cumulative effect.

Radiation
The corridor to radiation

I wanted to spend the week after it on the couch, but luckily I was well enough to force myself to choose my days as it was Jonty’s 11th birthday. We kept things low key, but I was very happy that I was able to help him celebrate his birthday with having a fewmates (and his female ‘cousin twin’, they were named this in Kindy as they’ve always been inseparable) around to play handball together and have a bonfire at night.

Jonty is our budding farmer, and requested a farm cake (This is the 4th year I’ve made him a ‘farm cake’) Luckily I came up with a simple idea of combine harvesters at harvest time that looked really effective.

Combine Harvester Cake

That was a Friday, and I can assure you that I took it pretty easy the next day. I mean, I did have 3 extra children in the afternoon, but the beauty of large families is that extra kids are absorbed into the crowd and create a diversion from the norm, which means the kids normally play even better than usual.

My children are still dealing with this well. For the most part, there is one child who has had to work through some emotions, and there has been such good support for all of us to help us work through this. But mostly, they are taking it in their stride and getting on with enjoying life. Probably the best illustration of this was on Tuesday when I shared with the kids that we had received good results after the CT scan. Trent came up a few hours later and said, “Mum, I’m really happy that you have got good news from your test results. But what I think I am even more excited about is that we are having meatballs for dinner.”

I am just so fortunate. I am very grateful for the blessed souls who have cooked meals or baked for our family, helped with cleaning, taken children on play dates and for all those who have prayed, sent messages, scriptures and been so positive. When God says that his Grace is enough, he so often does this by providing people at the right time and place. (IRL and online, in my experience!) I was listening to a podcast by the God Centred Mom (seriously, if you haven’t listened to her podcasts and you are a Mum, even if you aren’t, but definitely if you’re a Mum, do yourself a favour and listen to one. So much wisdom.) Heather was interviewing an 87 year old lady, (Vickie Kraft if you want to look it up) and there was one sweet stand out moment when this faithful elderly lady said, “There is no grace for your imagination”. His grace is enough when we NEED him, not when we are imagining something awful is going to happen. I have found this so true during this season. There is so much I could worry about, but I choose not to, because when I am in the middle of a situation, I have felt such a supernatural peace surrounding me that I know His grace is sufficient for me.
Post script: I hadn’t quite posted this, so I will give you an update on my first day back to chemotherapy yesterday. I have been waiting to see how I would react to the stronger dose. So far, so good! Even though the dose I’m now receiving is almost four times the previous dosage. I even went out last night to Toastmasters (A hobby of mine!) and competed in a speech contest. (I didn’t win, but it was good experience.) I have been feeling a little tired, but coping quite well. Yesterday during chemo I started cutting up a crocodile costume for my daughter (she was very insistent she came as a croc to our school’s Book Week equivalent, Festival of Nations) so I plan to hand stitch today, so that will be a nice easy activity.

Sewing during chemo

I’m told that the effects might increase with the extra treatments, but for now I will celebrate that I have more energy than I thought I would have.

Continue Reading