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My day has not gone so well. Last night I was having a lot of belly pains and chest pains. My weight has gone up to 46.5kg (from 43kg) so they were a little worried about fluid retention and/or kidney problems. So this morning I was sent off for yet another CT (I am so sick of having a cannular put in for CT dye - my poor little veins are so sore). About an hour after the CT Kerry called me - I think from now on I will refuse to take calls from Kerry as it is always bad news!! Apparently the tumour near my heart has grown from 2.7cm x 2.8cm two weeks ago to 2.7cm x 3.4cm. Starting chemo can initially cause swelling of the tumour so they are not too worried about this. I will have another CT soon and then they will be able to tell more then. The other unfortunate result was that my liver is currently swollen and my liver function blood tests are showing abnormal results. So they have called in a liver specialist and he is trying to determine what the cause is. Apparently none of the chemo drugs should be causing liver problems so he is looking back at all of the drugs I have been exposed to recently to see if any of them could be the problem. Hopefully it is just a toxic reaction to a drug rather than a more serious liver issue. The bummer is that apparently Panadol and liver troubles dont go together so I just have to cope with the chest and tummy pain! Unfortunately my appetite is not so great but I am trying to force food down whenever I get the slightest hunger twinge! Hopefully tomorrow I will have better news to report 

The chemo started yesterday and will run continuously for 5 days (oh what joys). Then I will have around 10 days of twice daily GCSF and then they should be able to retrieve the stem cells (one or two days). They had a tonne of trouble accessing my second port (I have a double port in now) and in the end after about 4 unsuccessful attempts (painful needle pricks into a very delicate still recovering operation site) they sent me down to x-ray where they had another go under CT guidance. In the end it took 3 doctors and a radiologist about 35 minutes to get it in the right spot by which point I was ready to pass out with pain. At least now it is in the needles do not have to get changed for a week. It is still bleeding a lot on the outside but hopefully that will settle soon. Well not much else to report.

Yesterday was a day of operations for our family - in the afternoon my port went in but in the morning little Tiernan had to have a colonoscopy. He had a few troubles starting on the weekend and we saw a gastric paediatrician on Thursday (they were lovely and managed to fit us in for an appointment this week instead of the usual 1 month wait). He then said he needed a colonoscopy to make sure there was nothing of concern and fitted that in for Friday morning for us. Tiernan was very excited about going to hospital and having an operation like mummy. All in all he did really well. There were very few tears and I am so proud of how he handled it all - he even coped with having a drip left in for a few hours after the op. All the nurses commented on how well he coped with it all - he was just incredible. His biggest issue was not eating - he had to fast from Thursday lunchtime and was only allowed jelly, juice and water until 6.30am Friday and then nothing until after the op. Every time a new person met him at the hospital he asked if he was allowed to eat and if they asked how he was he would reply “hungry” or “starving”!! Within minutes of waking up in recovery he was asking for food and once he was allowed to eat he certainly made up for lost time! He then accompanied me over to my hospital and held my hand whilst having my needles and was such a fantastic little boy.

An update on my situation - the needle biospy did not get enough tissue to get a conclusive result as to whether this tumour is Hodgkins or some other nasty cancer. To get a definitive answer I would have to undergo a full (open my chest up) biopsy which I am obviously not keen on. Kerry is also not keen on this as the recovery time (2 weeks) would delay my chemo. So we have opted to treat this as if it is Hodgkins (most likely scenario) and then do another CT in a few weeks and if the tumour has not shrunk then I will have the biopsy. So I will be starting a chemo regime called ESHAP on Monday. This is a continuous chemo treatment that goes for 5 days (as opposed to my old ABVD which took about 4 hours). I will be in hospital for this. My levels will all drop and I may require blood and/or platelet transfusions to recover. Once the chemo is over I will be given GCSF injections twice daily in order to get my white cell levels (immune) back up as well as to encourage my stem cells out of my bone marrow and into my blood. This will cause a fair bit of pain and I will probably be on morphine to cope with this. Once my stem cells go into my blood they will harvest the stem cells from my blood (kind of like giving blood - much less pain than the old way of getting it out of your bone marrow). Hopefuly they will be able to harvest enough stem cells from me - if not they will need to use stem cells from Nat, Ben or Tim or if they are not a match they will look for donor stem cells or cord blood stem cells. I will be on the GCSF for around 10 days and in hospital for this time. Hopefully at the end of this I will be well enough to go home for a week. Then I will come back into hospital to repeat the process all over again. Then I will be allowed home for another week break. Then I will have a CT to see how the tumour is going. If it has stopped growing or shrunk then step 1 is a success (success rate is 60%). If the tumour is under control then I will proceed to step 2 which is an intensive high dose chemo regime (as if ESHAP is not intensive enough!!) called BEAM. The aim of this is to kill the cancer completely. It will involve another week of chemo after which my system will be completely broken down - to recover I will be given a stem cell transplant which involves them putting the harvested stem cells into my system. It takes these stem cells 10 to 20 days to graft. This second step has about a 50% success rate. Then if all of that is a success I would have 4 weeks of radiation to kill any remaining lurking cells. So the success rates are no where near the original 90% for ABVD chemo but hopefully I will get through.

It has been a tough week for us as we had some questions answered like what happens if this does not work? and if it does not work the horrid question of how long would I have. We did not really like the answers we got. If this process does not work then they would keep trying different chemos to keep the cancer under control but eventually my body would not cope with this and things would start to fail. As for a time period instead of the years we were hoping for as an answer we were told probably a matter of months. But please do not focus on that. I am feeling very positive and determined as ever to fight this. I have everything in the world to live for and I am going to do it differently this time. I am going to accept help when offered and am going to fight this cancer with everything I have got - I am determined to beat it and see my kids grow up.

At the start of Feb, Cam and I went on a lovely holiday (without the kids) to Margaret River in WA. It was a well deserved relaxing break and we had a lovely time. It was a lovely location - we were staying at a resort right on the beach that was also near the wineries. It was just lovely. The ocean was very cool and I did not manage to brave the water at all. We spent our days going on walks and visiting wineries - it was just lovely. We did have one little episode where I had severe chest pains and Cam called an ambulance and I landed in Busselton country hospital. The doctor did ECGs on me and after consultation with Dr Taylor they let me out after a (thankfully) short visit.

When we arrived home we finally moved into our “broken house” - which Tiernan has now told us is no longer broken. In fact it still has a little bit to go before it is fully fixed but it is very, very livable. Downstairs is all finished with the exception of the vanity sink and upstairs is nearly finished with the exception of the doors being painted, fly screens going in, shower screens going in and the carpet going down. Outside still has the paving to finish, turf to be laid and driveways and front fence to go in. It is just wonderful being back in the house - the stuff dreams are made of!!

The little munchkins are both going well. Tiernan is as full of life as ever and very excited about being back in the house. He loves Arielle to bits and is the most loving big brother ever. We have a nanny (Natasha) looking after them on Mon, Tues and Wed and then they are both in childcare on Thurs and Fri. Arielle is now 6 months old and going along brilliantly. She is such a content and happy baby. She sleeps 11 to 12 hours a night and always wakes up happy and smiling. She rarely cries however she loves the sound of her own voice so often yells and squeals. She has also worked out turning on her music in her cot by herself and loves to do it at 3am!

Cam is doing the Energex rescue helicopter volunteering one weekend per month and one day per week. He is still enjoying it and is now able to do some of his duties without supervision. It wont be too much longer before he is able to do all duties without supervision. He is starting to do some of his normal IT work again in addition to doing all of the finishing off at the house (paving, painting, etc).

I have been feeling really well. I have had more energy and zest for life than I remember having for a long time. Life felt like it was just starting to pull itself together again (finally). On Monday I started radiation and it was a very easy process compared to chemo. Prior to radiation I had a CT scan just to make sure they had a comparison CT for the end of radiation. Dr Taylor (Kerry) did not even book an appointment for me for the results as it was just supposed to be informational. Unfortunately on the way home from radiation I received a phone call from Kerry to say that a new growth was found on the CT. So started the merry go round all over again. This week has involved a tonne of tests (CTs, bone marrow tests, PET scans, biopsy). I had a full body CT and luckily it only showed up the one new tumour. The bummer is that is it a very fast growing aggressive tumour and in the 7 weeks since my last CT it is already 3 cm x 3cm and yet the original tumour had shrunk. Apparently this is quite unusual to relapse so soon after treatment finished and also for it to be so agressive. I had a bone marrow test and this time I was quite heavily sedated so it was not an unpleasant experience at all. I am still very sore (they do a drill punch into both hip bones) however it is not too bad. We dont yet have the results for that test. Then I had a PET scan - this determines active cancer. Unfortunately the results of this test showed that the new growth is active cancer. This is significant as in the previous PET scan there was no active cancer so it means that this is a relapse as opposed to not getting rid of the cancer initially. The good news on that though is that the original mass was not PET active so it definitely is in remission.

Then yesterday I had a biopsy on the new tumour - last time this was not a stress and caused very little pain so I was not worried. Prior to the biopsy they did not give me any sedation which I thought was a little unusual but did not get too worried.When I was taken into the room for the biopsy they explained that I could not actually be given sedation (panic set in at that point!!). Apparently the mass is abutting my coronary artery and in order to take a biospy they needed me to be fully awake and able to hold my breathe in order to be able to miss hitting the coronary artery (nothing like a bit of pressure). The other problem was that there was a very real chance that they would puncture my lung during the process - at this point I had to sit down as my head started to spin!! I had some local anaestetic put on my chest and they did end up giving me some very light relaxing drug - so I was fully aware of the whole procedure although due to the local there was only a little pain. The radiologist was the one who originally did my first biopsy and used to do my MRIs and he was very supportive and held my hand each time they had to put a needle in and I had to hold my breath. In the end they did put a slight hole in my left lung. It caused a fair bit of pain when I breathed but luckily it has healed now. I did have to stay in hospital overnight though.

I am trying to be positive though and considering how aggressive this new tumour is I am very grateful that Dr Taylor ordered the CT this week as otherwise it would have been another 6 weeks before I had a CT and it would have grown heaps in that time. I just saw Kerry and they do not have the biopsy results however as the growth is a tumour chemo has to start again. I will be having another port put in next Tues or Wed and then starting ESHAP chemo the following Monday. ESHAP goes for 5 days (fun stuff) and then I will remain in hospital until my body recovers (two to three weeks in total). It will involve 2 GCSF injections per day (the ones that I react to) so they will have to use other drugs to manage my reaction as my body will not be able to recover on its own. It will probably also involve morphine injections to manage the pain of the bone marrow production starting again. Once my counts get high enough they will harvest stem cells from me. These will then be frozen. I will then get a week at home to recover a little more and then the whole process will be repeated. Then I will have a CT to determine if the cancer is under control. Once it is under control I will then undergo a high dose chemo called BEAM - this is a 6 day regime that wipes you out. Then I will have a stem cell transplant to enable my body to recover. It generally takes 10 - 20 days for the stem cells to graft back in your body and this whole process will involve 5 - 6 weeks in hospital. This usually has a 60% chance of working however given how quick it has come back and how aggressive it is Kerry is quite concerned. The next step will be a sibling stem cell transplant which would involve some other chemo regimes and then receiving the stem cells harvested from Nat, Ben or Tim. That is a much riskier process as there is a risk of a problem called graft versus host. Basically you receive someone else’s immune system and when their immune system is put into your body there is a risk that it will reject your organs and cause problems.

So the next few months will not be fun but hopefully I have learnt what worked and did not work last time and with the support of wonderful family and friends I will get through this.  

One more complication has arisen which is that my white cells do not seem to be recovering from chemo. It has been 16 days now and I am still severely neutropenic and seem to be going downhill quicker than up. If after 28 days my white cells still do not recover then they would like to investigate whether the chemo has done some underlying damage to my bone marrow and white cell production which will involve another bone marrow test. Obviously I am hoping they recover so I do not have to go through that again. Despite all of this I am still planning on leaving hospital tomorrow. I have totally had enough of the place and am very keen to get home. I will have to be very careful as I am neutropenic but I cannot just sit in here waiting for my white cells to recover as I will definitely go insane!! So I am sure I am going to have a battle on my hands tomorrow to be allowed to leave but hopefully I will be allowed home

I woke up this morning feeling terrible but thinking that surely this morning would be my morning of good news and that my blood pressure would be back to normal and my counts would have returned to normal seeing as they had been going so well. Well that was not to be the case - for some reason both my red and white cell counts took an absolute nose dive to being the worst they have been in the past 2 weeks and the old blood pressure although getting better was still not back in my normal range. So it was more potassium in the drip and I am up for a blood transfusion tonight and I am back in the severe neutropenic state - oh the joys of chemo!! Mum and dad visited today and then Cam and Arielle visited tonight so it has been a nice day despite my body not behaving itself!