One of the downsides of a portacath being reinserted into me is that I now am back on prophylactic Clexane to keep me from thrombosing off my veins again. The dose is lower this time than the last time as I was on a treatment dose of 90mg per day (1mg/kg for the med geeks), I’m now only on 40mg per day (0.5mg/kg). This means every day, at the same time, I have to inject myself. Clexane is quite a ‘stingy’ drug, the needle itself is only as sore as needles will be, but the injecting process is the bit that is the worst. I also am slowly starting to accumulate bruises on my abdomen, an unavoidable side affect of injecting an anti-coagulalent into your fat.
In other news, I’m now officially starting chemotherapy on Friday, the 27th of November, which is 13 days away from the writing of this post, so the countdown of feeling ‘well’ is now on.
It makes me want to savour being well for as long as possible.
Monday this week was the day I got my portacath inserted for the second time. It was my 4th general anaesthetic in the last 12 months. The last one I had was put in in December last year, but thrombosed up the IJV by February, after my 2nd round of chemo. This rendered my alternating arms as chemo targets for the remaining of the rounds.
This time they inserted the portacath on the left side rather than the right side, as the right IJV was difficult to visualise on my most recent CT scan. Interestingly, when we dressed the wound this evening, the insertion in the IJV is much higher up the neck than the last one. It will be interesting to see if this becomes an issue, because I’m already noticing the fact that it is pulling on my neck much more than the last one.
Anyway, the whole thing serves as reminder as to the path I’m about to walk down. It brings home the reality of the fact that I’m about to hit more chemo, and the next little while will at best, bearable, and at worst, miserable.
Heres hoping its the former rather than the latter.
Well, I would love to begin this post with great news… unfortunately I will begin and end it with really bad news. Two days ago I had my oncology appointment and was given the results of my 3 month follow up CT scan after my last one showed an enlarged node.
The results are as follows:
- The existing enlarged node is now at least twice as big, from 9mm diameter to 23mm diameter
- There are multiple new nodes in the aorto-caval region, running up the aortic chain that are significantly enlarged. These nodes are particularly large vertically, up to 4 or 5cm in length which can be seen on the coronal section of the scan.
- One further small node of 4mm in the sacral region of unknown significance that was not there previously.
These results are pretty much as bad as it gets. This is all recurrence that has occurred within 6 months of the first line of chemo, which makes it even worse. This is considered a rather aggressive recurrence of the cancer, and the goal of further treatment is no longer cure (although still a very remote possibility), just elongation of my life.
So, the plan from here initially considered possible surgical resection of the nodes, but that has since been ruled out, as there is unlikely to be any benefit gained from surgery when weighed against the risks. Chemotherapy will restart again in the next few weeks, once I get a portacath reinserted. This will be a different regime than the last one, and I will loose my hair on this one and look like a proper cancer patient!!! (I had so many comments on how well I looked last time, I think it was cos I kept my hair). The portacath of course means that I will be back on daily prophylactic clexane injections since I am now officially a clot risk after the last IJV thrombosis.
The depressing part of all of this (apart from the fact that I’m looking at my eventual demise) is that I am probably the healthiest and best I will be right now, and its likely to be all down hill from here. I have been really appreciating all the support I have had from everyone over the last few days. The next phase of life will be interesting to say the least.
I’m 3 days into the 5th round of chemo. This particular round started off a lot worse than previous rounds. Since I no longer have a portacath, this was the second infusion into my left arm, and it was fairly painful. Thankfully, since i’m alternating arms, there should only be one more infusion into the left, and two more into the right by the time I finish. Furthermore, this time round, I had a lot more symptoms immediately after the infusion. I had really bad cramping, cold sensitivity and nausea. I have deliberatly hit the anti-emetics a lot harder this time, and it seems to have got on top of the nausea which is nice.
So once day 1 and 2 had passed by, I have steadily improved, and if anything, would say overall that this infusion isn’t too much different from the previous 2, apart from the rough start to it all.
Herbal teas seem to be the mainstay for fighting nausea, as well as keeping me re-hydrated, since anything cold causes my throat to cramp up. My sister just brought me up a huge delivery from this place in Wellington which definitely does the trick… I have just finished a very nice cup of Jasmine Dragon Pearls.
I’m currently sitting in my armchair with round three of chemo and it’s associated toxic chemicals coursing through my veins. Currently I’m feeling pretty good, but anticipate feeling the opposite of that in a few hours time, and then again for the next week.
Todays chemo is being given via a vein in my left hand rather than through the portacath I no longer have. Supposedly it was supposed to make my arm hurt quite a bit as it goes in, but so far so good. I’m currently 45 min into a 2 hour infusion.
So, I’ll leave you with a photo of my good looking self.
I have now officially finished round 2 of chemotherapy. That makes 1/4 of the way through all 8 rounds. This particular round was land-marked by the incident of thrombosing internal jugular veins, and the surgery required to get my portacath removed. Apart from that, I would not say that this round has been any worse or any better than the 1st round. All the symptoms were more or less the same, the only difference being that they tended to kick in a little sooner and last a little longer, specifically the oxaliplatin induced neuropathy.
So now I get a week for my body to detox, before Thursday next week when it gets flooded with toxic chemicals again. I’d like to take the opportunity to thank all those who have helped recently with bringing over of meals etc. They have been really good particularly while I was in hospital, and also when I cant do much more than move from the couch, it means Hannah doesn’t have to cook all the time :-).
On the whole, I have to say that I’m not particularly looking forward to the next 6 rounds, but that is life, and I have to deal with it :-). Peace out.
I thought I would briefly explain what exactly the Internal Jugular vein is, and why I had problems with it.
The Internal Jugular Vein (IJV) is one of two major veins that drain the deoxygenated blood from the brain and head back down to the heart so that it can be sent to the lungs for oxygenation again. Each person has two IJV’s as well as two External Jugular Veins (EJV’s), and these are the main tributaries for blood to return to the heart from the neck upwards.
What happened with me was that my portacath, a tube that ran from my chest to the heart, makes it’s way to the heart by inserting in the IJV, then follows the IJV down where it joins the brachiocephallic (this vein drains the arm), which then joins the Superior Vena Cava, which then drains in the Right Atrium of the Heart. At the point of insertion into the IJV, this is where a clot started to build up. Clots generally can be caused by a number of things, but having foreign body in your blood vessel can be a cause, also, in my case, having cancer is also referred to a ‘pro thrombotic state’, as well as the chemo drugs I’m on [For the medical students: Capecitabine is pro-thrombotic, yet its dose-limiting side effect is thrombocytopenia.. any ideas?]. This all added up to a reasonable risk, one doctors and myself were willing to take, to causing a clot.
So the clot started, and once it starts, unless you take away the source of the clot, it will continue to grow. The major risks of having a clot there are mainly that fragments could break off, flow downstream and into the lungs, block off the lungs, which then stops me from oxygenating my blood and causing me to die from oxygen starvation. This is called a pulmonary embolism.
The portacath was removed with surgery to prevent the clot growing, and I was also placed on regular clexane injections in order to assist the prevention of further clot formation. The body will do the breaking down of the clot in its own good time.
And THAT is what last weeks drama was about!
So, I had the surgery last night, finally!!.. and this means no more nil by mouth dieting regime, which I am happy about. As of this stage, I’m yet to be discharged, but am currently at home because I manipulated the system to give me leave. I’ll be going back in to the hospital in an hour or so.
My portacath has been removed, and I still have a giant clot in my right internal jugular vein. The clot should hopefully slowly resolve over the next few weeks now that the source of it has been removed. This will be aided by the fact I have to inject myself twice a day for 2 weeks with clexane, also known as low-molecular-weight-heparin. After two weeks, the injections will continue once a day for about 3 or 4 months, or till the end of my chemo to help resolve the clot, and to prevent any further from occurring. The injection is just like an insulin injection, except way more stingy. The needle itself doesn’t hurt, its the stupid drug that causes local stinging for about 5 or 10 min after the injection.
So, at the moment, we are just waiting for the vascular team (again!!) to give me the all clear on the discharge. They weren’t projected to visit till sometime this afternoon, which is why we snuck home, so I could have a decent shower etc. In the mean time, I’m gonna be a complete cripple until this clot resolves. My neck is REALLY sore, so much so that I took morphine this morning to make it a bit more functional. I cant even get dressed without help, any sneezing, coughing turning of the head etc causes pain. Anything that may cause an increase of pressure on the carotid sheath, or the surrounding structures is bad news.
Also, apologies on the previous posts being out of order… it has something to do with the fact that I was posting them from my iPhone, it re-arranged them for some reason.
Quick update – I have now been dishcarged, so don’t have to go back into the hospital!! – Still a cripple though.
I have starts writing this post in hospital while waiting for an ultrasound scan of my neck. Yesterday morning I awoke with a sore neck which I put down to the way I slept, however, over time it got worse. By last night, there was also swelling which I chose to ignore and went to sleep. This morning when I awoke, it had neither improved or got worse, but it had become apparent that it needed attention. The swelling is located right at the point where my portacath inserts into the sublcavian.
So, long story short, I’m awaiting an ultrasound to work out whether or not my portacath has clotted up or not. Let’s hope it hasn’t.
So it turns out I have thrombosed of my internal jugular vein. The consequences of which are that my portacath will have to be removed. So I am currently being admitted and then being put on a surgical list for the removal.
I’m not looking forward to infusions of oxaliplatin thru the arm veins!!!
I’ll try to keep this updated as things happen.
I’m 2 days out from finishing the first round of my chemo, so far so good. Each round basically involves starting with a 2 hour infusion of oxaliplatin on day 1 via my portacath, followed by 2 weeks of 4 tablets, twice a day, of capecitabine. The third week is a week off in order for the body to recouperate. This is the end of the 1st two weeks, before i start again on the infusion next Thursday.
So to start with, for at least the first 5 or 6 days, i felt miserable. No energy for anything, emptying the dishwasher made me collapse in exhaustion, and i could hold a conversation for all of about 20 min before i needed to sleep. Added to the fatigue, were symptoms associated with the cold. Cold felt like pain. I had to use a tea towel to get my frozen bread from the freezer lest i drop it on the floor on the way to the toaster! My throat also spasmed at any liquid that was colder than warmer than room temperature, which was pretty annoying. It meant i had to always run the tap to bring it up to temp before i got a glass water. Furthermore, cold caused me to cramp up, so it was all about warm clothing and keeping the freezer door closed. Thankfully these symptoms wore off within about 4 days.
Essentially this now means, i know i will be dead to the world 1 week in 3, and can at least now start planning my life around the remaining 2 out of 3 weeks of function. Word on the street is that the toxicity is cumulative, so by round 8 I’m probably gonna be a cripple…
In the mean time, I’m gonna try and make use of my time, pick up a paper or two at uni that is low demand, maybe relearn my french, learn the guitar, and try building a bookcase.. All of which sounds good, but we’ll have to see whether or not it comes to fruition.