Well, just had my chemo # 2 on Tuesday ( or will finish it today when they disconnect the pump with the 5FU).
There have been side effects, but so far relatively mild. Again, I'm told that they may increase with each cycle, but for now they are manageable. The 'chemo brain' is the one that is probably getting to me the most ... inability to really concentrate, short memory lapses. It will go away once all chemo is done, but in the meantime it makes it very hard to get things done.
Met ith Dr. J ( my chemo oncologist) on Monday, and bloodwork looked fiine so we will proceed with the same chemo regimen. I had written down all symptoms/ side effects to discuss with him, as I didn't trust myself to actually remember them. They're all within the range of normal; he's happy that I've only had mild nausea ( since it means my current meds are doing a great job at keeping the worst at bay).
So, since I was asked via email about a few of the side effects:
Cold dysesthesia - boy, that one is hard to get used to. My computer chair has metal bits, and when I lean against them I get a jolt. Unexpected, but we're learning ways around it. Thank you Ula for the gloves! :)
Joint pain - Nasty, but only for the first couple of days. Dr. J said it was okay to handle with some ibuprofen ( and thankfully I have the extra strength one at home)
Digestive disturbances. ;) Aren't you glad I'm leaving that nice and vague? Despite that, haven't lost more weight due to chemo yet...knocking on wood though.
No neuropathy yet this cycle, yay.
Extreme fatigue - hasn't kicked in yet. I'm really tired, but nothing like cycle 1. That, however, started the day after they took off my pump, so I'm thinking its coming over the next 2-3 days.
Dry mouth - started after chemo pump last time, haven't had it this time yet. I've been using the humidifier in our room all the time though, and I think that's helped a bit. Will have the baking soda/ water rinse ready just in case, but no mouth sores yet. ( again, knocking on wood.)
Assorted aches seem to have stopped, yay. My port finally stopped hurting and settled down.
No hair loss yet, though I've noticed some thinning. I'm told with the chemo cocktail I take its probably it won't all fall off, so we have to wait and see.
ALSO, EMLA and EMLA PATCHES. I could kiss them, they're... glorious. I put one on a couple of hours before I had to go in for the chemo and didn't feel the needle stabbing me in the port area at all! :)
We did get some handouts at the chemo class before I started treatment on how to handle different side effects (such as diarrhea, fatigue, etc -- if anyone would like me to scan them, email me and I can send then to you!)
Happier Thoughts and Celebrations
Needing to be reminded of the happier things in life, we are planning a small vow renewal in about a week and a half from now, celebrating our 12th anniversary. We've talked about doing one since our 10th, but didn't...so with this year being what it was, we thought it was a perfect celebration. Twelve years of being married to my soulmate and best friend, almost 8 of having our son join our happy team. :)
We will be thinking of all of you that have supported and encouraged us through this difficult journey, bless you all.
For those not familiar with the quote, its Wash's mantra from the series ( and movie) Serenity. He's the pilot of a rickety spaceship than more often than not ends up nearly getting destroyed at every turn. That it doesn't speaks volumes not just of his skill as a pilot but of his sheer determination to somehow pull through, despite the odds against him and the ship. He recites this mantra as his way of focusing on what needs to be done and shutting out everything else, perforce channeling every inch of energy and concentration into the task at hand -- landing the ship safely. Wash doesn't control everything. He can't. But what he can control is his own will, and the determination to see things through even at the roughest times.
I love Wash. I do. If anything this insane ride this year has shown me that you need that sort of will ( with a sprinkling of humour) to make it through the lows.
There are some fellow PMPers going through a very, very rough time right now. Its hard not to let that get to you, as its entirely too easy to see yourself in their shoes. But you also see the people who post of their cancer free anniversaries ( 2 years! 5!!! 11 !!! ); I focus on those. In five years Aiden will be getting ready for his bar-mitzvah; in eleven he'll be eighteen, entering university and ready to start a road on his own to some degree. I just realized that until I pass that 5 year milestone I won't stop looking behind me, seeing the shadow catching up to me. That, it seems is the new normal. You can't get away from the awareness of cancer, once it has touched you.
However, you CAN choose to stop living your life like its on borrowed time. Yesterday the amazing Neil Armstrong passed away. First man to walk on the moon! One of the things he was quoted as saying was:
"I believe every human has a finite number of heartbeats. I don't intend to waste any of mine." - NA
I am going to stop dwelling on the days that are low. There are days at the beginning of each chemo that are nasty, and rough. I'm told they get rougher with each cycle, to boot. But after that? There's a few days in between where I feel great and almost like my old self. :) There are GOOD days, where the sun is out, I get to play with Chris and Aiden, I get to eat what I want ( and have it stay in!), I get to make new memories instead of dwelling on the old. Yesterday I did just that, going for lunch and an afternoon in the part with my favorite guys. Here's to the good days, and enjoying each and everyone of them! :)
In all fairness I shouldn't complain too much - so far it hasn't been as bad as I expected ( knock on wood!); I'm told by others in a similar regimen that it gets worse cumulatively, but right now I can only comment as to what I've felt to date.
Chemo was weird. Having something stabbed into the port wasn't a great deal of fun, but thanks to a suggestion from the support group next time I will come prepared with EMLA cream. Emla numbs the spot; you apply it an hour before getting jabbed ( and cover it in saran wrap or something similar), or use the patches. When I asked the nurse about it she agreed it was a great idea... in fact in Canada it isn't even prescription, you just ask the pharmacist to get it! I wish they told you about it in advance, but I'm passing the info along. No sense gritting your teeth through chest jabs if it can be avoided!
Once they hooked me up to the port the first thing they gave me was some sort of supplement, actually. I was told its something to help prepare the body a little better, so that the effects of neuropathy won't be as bad. I'm hopeful it works! I can't imagine trying to draw with my fingers numb.
The biggest surprise came when they described the side effects of one of the chemo meds I'm getting, the Oxaliplatin, and mentioned something called Cold Dysesthesias. We hadn't heard anything about that, and were given a handout then to read. Basically, the oxy makes me REALLY sensitive to cold for about 5 days after each infusion. How sensitive you ask? Well, if I need to get something out of the fridge I was told I should use an oven mitt!
From their write up, some of the effects:
Tingling of numbness in hands/ feet, cramps
tightness in jaw or throat/ difficulty swallowing
abnormal pain sensation in your tongue
difficulty breathing, like you can't catch your breath.
JOY. Thankfully being prepared in advance helped me avoid most of these, as much as I could. My first treatment was during a particularly nasty heatwave here, so no cool drinks/ no A/C was driving me a little crazy.
Chemo Pump/ Bolus
Admittedly that was an odd sensation. Because of my less than ideal veins I have to have the chemo every 2 weeks via a combination of IV at the cancer center and a pump I take home for 46 hours. This particular methods delivers my other medication, the 5 -FU. After the 46 hours are done the bolus has pumped all the chemo through my port and deflated, so I have to go back to the center to have it taken off. Its awkward and hard to sleep off ( I basically have it on a fanny pack!) but not as bad as I'd anticipated.
I get the expression BONE TIRED now. There were a couple of days I don't think I got out of bed. I slept fitfully on and off, but mostly it was just sheer exhaustion. I couldn't stay up. I have been taking my nausea medication pretty regularly and one of them does also contribute to that, I imagine. Plus without the HRT I have menopause and its joys to contend with as well, so... I was pretty much in bed for a few days.
Happily though, ( and again, knocking on wood) the nausea has been mostly kept at bay with medications. I can feel my mouth dry again, the tastebuds changing ( like they did in the hospital) but as long as I am not throwing up like crazy like at the hospital, I am content.
So, starting off week 2 after chemo. With any luck the effects for this one are mostly done, so one cycle down and 11 to go!
When I'm stuck with a day That's gray and lonely I just stick out my chin And grin and say, oh The sun'll come out tomorrow So you gotta hang on 'til tomorrow Come what may
- Annie the Musical ( "Tomorrow"
Having nightmares about chemo. Clearly my subconscious is not getting the hint !
Before anyone worries- nope, I'm not down, but I am nervous about starting chemotherapy. I hate unknowns. Even when I was diagnosed I figured I'd find a way to handle things... researching outcomes, and treatments, and just reading the blogs and experiences of other people out there helped a lot. I wasn't afraid of the cancer.. I was afraid of the unknown.
I had my surgery with the best possible outcome, and I know that chemotherapy is just another step in getting rid of the cancer, hopefully for good. 2012 was the year to take it all on, and that's fine by me. If anything watching the Olympics has reminded me again the amazing feats that a body is capable of, that sheer determination and dedication can produce.
However, I would be lying if I said I'm not dreading the actual treatment, and not knowing how it will affect me. Will I have the same horrible nausea and sharp weightloss as I did just after surgery ? What about all the other possible side effects one reads about? Then again, some people go through it relatively unfazed... so which one will I be? And what will the next half year be like? I have no answers for that.
I have a vague idea as to what to expect, thanks to the online support group that I belong to. They are amazing people, and many have gone through chemo ( different regimens, and with different results and side effects.) But at best that's what it is... a vague idea of what MIGHT be. I just remind myself that I hate the cancer more than any side effect that might come my way!
Yesterday I went to a friend's wedding, and was reminded of all the life and love that I am lucky to have. Chris and I are planning our own celebration in September, a vow renewal for our 12th anniversary. We are also making plans for something else to celebrate the end of chemo once it takes place, hopefully, in mid January. As much as the mind seems to focus on future dread, I choose to derail it and re-focus in on wonderful future projects.
I have been listening to the David Guetta song on repeat ( well, that one and Kelly Clarkson's "What Doesn't Kill You Makes You Stronger" ) as I try to not stress over chemo starting in a week.
The past couple of weeks I have heard about several people who lost their battle with cancer, and I've had a few moments of less than happy thoughts. Fact is ... yes, people do die of cancer. But not everyone that gets cancer does. It IS possible to be on remission, it IS possible to not wake up and have the first thought of the morning be about cancer.
In the low days its hard to picture a day where the ghost of cancer won't be everywhere, where the side effects of treatment, or the pain of surgeries ( or the cancer itself, in some cases) won't be there. But I have met wonderful people who underwent my same surgery and treatment and are cancer-free several years later.
I have to believe that can be my future too.
I got through the rotten days by seeing the picture of my son's smiling face, and his 'Mommy, Please get better soon.' I'm trying to. So, chemo, and whatever else.. you are not going to keep me down if I can help it.
I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium
- D. Guetta, "I am Titanium"
So... remember when I said, "Hey, no biggie if I need a port. I'm pretty sure I had one at the hospital during my surgery." ?
Yeah, no. Apparently I had something much smaller called a central line, and my PICC line.
Yesterday we went in and had that port put in at VGH; overall we were at the hospital for about 5 hours. Much of that was waiting in the queue and prep, and then about a half hour in recovery afterward.
During the prep I was reassured of why I was choosing the port; my nurse burst the vein in my hand ( OW!) and the head nurse had to come to put another on this tiny vein on the side of my thumb. She was a brisk, no bs sort of woman, and I liked her. In fact, I liked her a lot once she pulled the failed IV off the first site and secured it into the second location.
I met with the surgeon and his resident, who dispelled my ideas about what a port-a-cath was and explained a bit about the procedure before I went in. There were words like 'large' and 'jugular' in there, and I'm pretty sure I stopped listening at the jugular part. I have this fear of sharp things going near my veins and arteries, see. To hear them talking about putting this ball like device under my clavicle and a tube going up into the aforementioned vein... well, had I not been in a hospital gown and with an IV already I would've gotten up right there and then and ran away.
Not long after ( probably seeing my longing glances towards the exit hall) I was wheeled into surgery. I was given local anesthetic via IV and them more put with a needle on the chest area; I felt the pokes, but not the glorious sleepiness I was looking forward too. I did get to hear the surgeon's music throughout; mostly it was 80's music, but as they got onto the main part of the surgery the Rocky Horror's "Timewarp" kicked into full swing. It was a little surreal, to say the least.
I'm glad that though I was conscious through the whole thing I didn't get to see it, as they put this tent over your head to presumably keep the site sterile. I emerged sore, covered in a large bandage on my chest, one on my throat and this pink stain that makes me look a little like an underdone lobster. The night was not fun and Chris had to put up my grumbles, as to be fair it was pretty painful; today I managed to sleep on and off, go for a walk and have a manageable amount of pain I'm handling with the advil.
I'm just happy that it's done, and I'll be happier once I can take the bandages off!
For the curious, here's what a port-a-cath looks like: http://www.sir.net.au/portacath_pi.html
Got a call from VGH today - I'm slotted in to have my port put in tomorrow, woo! I told Aiden I'm now going to be part cyborg, hehehe. True to form, he didn't buy it, but it made it a bit less scary and odd. ;)
My chemo is officially scheduled to start on August 14th, and go every two weeks after that. We got to go to the chemo information session yesterday, and got some good general info. Now that we know its coming I wish it were closer, so I could just get it over with.
Still adjusting to being off the hormone replacement therapy. I asked an oncologist at the session and she noted that they don't like having people on it, as it increases the chances for breast cancer. Like I need another one!
For now, enjoying my balcony's tomatoes and trying not to think too hard about what may lay ahead. No sense in letting my imagination run wild; whatever comes we'll deal with, somehow. And if I lose my hair... well, might be a good chance to be a redhead for a bit! :)