Friday, April 13, 2012
I signed in out of chance a few weeks ago and saw a message from David that was in response to my last post. He wondered if it would be ok to post the article he has. Unusually for me, for the pre cancer me, exercise has actually become a huge part of my rehabilitation from treatment and my ongoing life.
I am now at a 2 year survival point. A huge milestone to achieve, with my next being a 5 year point. For the stage of disease that I had my "5 year survival" rate is in the range of 65-75%. While I'm sure that I will be in that group, and while I continue to live my life as though I am, it makes me very aware of the fact that many other women won't make it. I have general health, youth (relatively) and now exercise on my side.
The treatment has finished, but I do still live with the after effects and scars - both physically and emotionally. Our journey post treatment took us on the most amazing tour of the world, has walked me through the complexities and frustrations of dealing with acc, and nearly to a journey of surrogacy - which just wasn't to be.
I passed my exams and am now just enjoying living. I am ever inspired by Dr Jared Noel. I have never met him, but he works at Aucklandw hospital. He was diagnosed with bowel cancer shortly after graduating from med school and after getting married. He has continued to work alternate weeks while attending chemo the other week. An incredible inspiration and example on how to live despite disease.
I'm not sure if anyone will read this, but as before, the exercise itself for me is therapeutic.
I now understand the term and will use it here: live strong.
Questions About Appropriate Fitness Programs
A prescription for exercise is still problematic, because there is confusion over what types are most appropriate to specific situations. It is known, for instance, that bone cancer and cancers treated with hormonal therapy indicate the need for weight-bearing exercise, but what special precautions should a patient with brain cancer take? Can lung cancer patients use more strenuous forms of exercise without incurring injuries? How important is combining the usual endurance workout with strength training? Most of these questions are still awaiting the results of studies, but the latter one has been addressed in several studies.
Safety and Efficacy Established for Strength Training
Endurance training offers many benefits, but increasing the individual's fitness level is more rapidly accomplished by inclusion of strength training. The idea is catching on among exercise intervention programs, but there is still a lot of resistance to the fact that most cancer patients can handle this type of exercise. This fact was established in a 2007 study of 57 patients who had been treated with chemotherapy for breast, gynecologic, testicular, lymphoma, and colorectal cancers.
The safety of strength training was shown with no reports of adverse side effects or injuries. The efficacy of strength training was tested with measurements of cardiopulmonary function, muscle strength, and an overall quality of life score. Men were found to increase cardiopulmonary function by 10 percent, and women increased by 13 percent. Similar results were found in the category of muscle strength. The health-related quality of life score improved significantly for all participants.
Generalizing Exercise Recommendations
It is important to realize that every patient faces a different prognosis, and there is no one-size-fits-all exercise program. Some types of exercise will be useful and safe for a larger group, such as range of motion exercises and walking, but others may be contraindicated by specific conditions or complicating factors. Further, specific conditions will benefit most from specially designed exercises. Because of this, the best option is to discuss exercise with the treatment team early and often, and try to find a fitness expert or personal trainer who is trained in working with cancer patients.
The benefits of exercise for all cancer patients has been established, and researchers are still at work trying to quantify the benefits of specific exercises for different situations. Evidence currently shows that more exercise and variety in styles provides greater benefits.
Friday, March 19, 2010
My Liver function tests are still improving, although I still have NO idea why they went abnormal. I would have put money on it being the chemo at the beginning, but it is so unlikely because they kept getting better while we continued the chemo. So they will probably remain as one of my bodies little mysteries.
I must say that it feels good to have finished chemo. I really didn't like it at all. (Not sure if any one does). The only good thing about chemo was the other patients. I was always with a good group of people and we usually spent a good part of the day laughing through it. What I really hated: the dexamethasone. Its a steroid drug (not like the body builders use) thats main job is to combat the nausea. And it was pretty good at it. But it also made me constantly awake, fairly grumpy, extremely achy on the days I wasn't taking it (they give it to you 4/7 days) and it has turned me into a chipmunk.
I can cope with most of the side effects of most things, but the fact that every time I look into a mirror I see a puffy, chipmunk "dex face" it really reminds me that I have cancer, and that I am a patient. I know it will go away, and in some ways should be grateful that I have put on all the weight that I lost (and maybe a bit more - also from the dex), but I really don't like it, and it is such a small thing.
Next week I have 4 more zaps of radiation and then I am done for a bit. There are a few more bits and bobs to do in a couple of weeks, then follow scans in a couple of months. It takes a few months to work out if the radiation has done its job so thats why we wait for the follow up scan.
In the mean time I have to work out what to do with myself. I get very tired doing even small things at the the moment and the fatigue will take some weeks to months to resolve.
So once more I guess it's a case of take it day by day and see where we end up.
Wednesday, March 3, 2010
The liver tests were improved on Monday so we went ahead with chemo. It makes me feel very washed out, and gives me a feeling of a hangover for most of the week, but I can still eat pretty normally, and still no puking (Whoop whoop).
I am on so many drugs, and also ginger drinks, and acupuncture I really have little idea as to what works the best.... so I just take it all!
The other reason I haven't been writing much is because I don't really know what to write on here. Its not a diary, so hopefully theres not too much airy fairy crap, or deepest darkest thoughts (although there really aren't very many of those at all!) so really right now its just the basics. And when things are into a routine, there isn't a lot to say. Tomorrow I am half way through my radiation/chemo. Radiation Treatment 14 out of 28.
The radiation is really very easy. I turn up, lie on the table, get laser measured up, pushed and pulled into the right spot and then zapped (which I can't feel) for about 10 minutes. The hardest thing is trying to get my bladder (yup more bladder talk people) appropriately full. It helps to push the small bowel out of the way so that the bowel gets less radiation. When I have an early morning appointment it means setting an alarm 2 hours earlier to stat drinking fluid. I have to down about 1.5L over 2 hours to get a comfortable fill. On Monday, I got it wrong! It was a chemo day, so they give you lots of intravenous fluids and medicines to encourage you to pee. I got to radiation and was quite uncomfortable. And when I say quite, I actually mean really uncomfortable. I was in a cold sweat, couldn't breathe properly and thought I was going to loose it (literally!). But I made it through and (because they make you measure your pee volumes on a chemo day) I now know (and so will you....) that I have a bladder capacity of approx 950mLs! ouch.
The only other thing that is a bit weird with all the treatments is running into other people. Some of the young children have to have a general anesthetic for their radiation, so I see the anesthetists quite often. There in all my hospital gown glory. I don't really mind it, it just feels weird.
Again we have been so blessed by the support and care from our friends and family. We so appreciate every message, every coffee, every ride to the hospital, every meal and every visit. Rob has gone on a work conference for a few days and Mum is here with me. I'm loving having her here with me and feel quite pampered.
So a little bit nauseated, a bit more tired, but definitely getting there. Bring on the second half!
Tuesday, February 23, 2010
Monday is my chemotherapy day. I arrive about 7.30, go through about 8 and then get started.
IV fluids, anti nausea drugs, then the chemo.
I always thought you would start puking when the chemo went in. you know, all sitting around puking together. But its actually a delayed thing. Now I have been lucky, no puking at all. Close a few times, but no puking.
Last week the nausea lasted 4-5 days. Just background nausea, like a hangover. I have 5 different drugs I take each day for nausea and I really do feel like a pharmacy.
I have to carry around a lunch box full of drugs with me everywhere I go just incase I need one of the many I have. Given that I know what all the drugs are for, and what all their names are, and how often to take them I have no idea how someone without a medical degree can keep up! I even have to have an application on my iphone to tell me when things are due. I just can't remember what I have taken each day and when!
I've even gone down the alternative medicine pathway for some things. I am giving acupuncture a go, and am wearing acupressure bands during the day. (I must admit, I did make sure there was scientific evidence behind it first - once a geek, always a geek).
Rob went away for the weekend, and I missed him a lot, but it was good for him to have a break and it gave me the opportunity to have some girl time with my Mum and Aunty Roisin. It was a pretty quiet weekend, partly because I managed to become a difficult patient (no surprises there really) and get myself a fever. Fever and chemotherapy don't really go so well. After 24 hours of regular paracetamol and keeping up with fluids it was still there, so then we started antibiotics. Which of course have upset my guts. Great. But at least the fever is gone.
When we turned up for Chemo on Monday I got the added complication that my liver function tests are becoming abnormal. And of course we have no idea why. When you are taking 10 different medications a day, are having chemo, have recently been through 3 anaesthetics, a cycle of IVF and had a fever its anyones guess. So now we are on official liver watch.
I'll get another swag of blood tests done tomorrow so that we have a better idea. Keep taking the antibiotics (caus it seems to have stopped the fever), stop taking the paracetamol and wait and see.
Each day I just have to take one at time at the moment. Try and be the patient and not the doctor and have a little faith (make that a lot) in other people.
Monday, February 15, 2010
On Valentines Day Rob and I wen tout for a lovely dinner. We were lucky enough to get a table at the French Cafe in Auckland - one of the nicest restaurants in Auckland. We had a fantastic 7 course degustation dinner. (Corn chowder with prawn balls, marinated tuna with asian flavours, seared langoustine with pancetta, goat cheese tart, Snapper with Lobster (for me, Duck for Rob), green apple sorbet and then chocolately heavenly goodness for me and raspberry soufflé for Rob). It was divine and we had a great time. especially as we checked out all the other dinners and tried to work out what their story was. It was a late night and then Monday morning a fairly early start. Suited me though. Less time to lie in bed, and I actually managed to get some sleep.
We got to the Hospital about 8.30 in the morning, and went through to start the chemo just after 9. I get a bed, a drip in my hand and then connected up to a pump. There are 3 beds in the day room, and a bunch of comfy chairs - which get filled up with patients pretty quickly. My first 2 room mates were David (Bladder Cancer) and Toni (ovarian cancer). They asked when I started and when I said it was my first day they stated making the its a new girl comments. They were very sweet and its quite reassuring having the company there from other people in a similar situation.
Before they give you the chemo they give you a bag of fluids IV (into a vein) with some salts and minerals in it. I reacted to one of those (magnesium sulfate) which made me feel as though I had flames coming out of my chest and mouth. It lasted for about 40 minutes while the fluid went in, and then gradually went away. The chemotherapy itself didn't really feel like anything. It made me feel a bit tired, but that was about it. Then more IV fluids and down to radiotherapy for my first treatment. I don't feel anything with the radiotherapy. It's a big room, with green laser beams coming out of the roof so that they can line up your tattoos with the right spots. Once you are all lined up they leave the room and the machine moves around you making whirring and beeping noises. then you're done.
Then back to chemo to finish the IV fluids. I had a couple of visitors which was fabulous and helps to break up the day a little.
We headed over to the main hospital to pick up a(nother) prescription. It's funny how many people you can see while you wait to pick up a script!
By that stage I was starting to feel quite nauseated, and apparently even I have paler shades of pale! who would have thought!
For the rest of the evening I just hung out in bed or on the couch. I didn't vomit, wasn't stuck in the bathroom perched over the toilet worshiping the ceramic gods, I just had waves of nausea. I have quite a few medications that I can take to help, but it still sneaks in there. I managed to get a couple of hours of sleep last night (which was pretty good, because one of the anti nausea medications makes you quite wired) and then back for a quick trip to radiotherapy this morning.
So I have felt better, but I have defiantly felt much worse. We are holding up really well emotionally, and are 2 days down. 4 or 5 more chemo days and 26 more radiotherapy sessions to go.
Thursday, February 11, 2010
3 sleeps to go now. I’m not sure quite what I think or feel. Relieved? Sort of, because now we are starting to get the treatment going, but not really, because I know what’s coming… I think that being medical in this situation is worse in some ways, you know too much, people don’t explain everything because they assume you know what they will be talking about, and when they do say things I don’t really want to hear it. So maybe I feel anxious. Yup, that I do. We didn’t have the easiest week this week. After surgery I struggled with 4 days of nearly continuous nausea. I was sore, but the pain killers made me nauseated, and even without them I felt sick (and sore) after the anaesthetic. I really wondered if having the operation was the right thing to do. The thought of having the embryo is still so distant. It still has a long way to go. Having the nausea just from the anaesthetic I do feel quite anxious about the chemo.
Today I feel quite a bit better. We had to go to a medical oncology appointment this morning. It is quite surreal sitting in an outpatients clinic and wondering which of the registrars (that you have seen out drinking, or at a med school happy hour) will be charting your chemo. Luckily it was someone who didn’t train in Auckland, so I felt a little relieved.
It was more of the same stuff. You are likely to feel sick, your kidneys may take a hit, you may have decreased sensation in your fingers and toes, you may loose some of your hearing, you wont loose your hair… blah blah blah
In the space of 15 minutes waiting to pick up a prescription we saw about 10 people we knew through work. It was quite nice to see them though.
Again this week we have been blessed by the love and support of our friends and family. Getting to catch up with old friends, receiving gifts from here and from afar, we do feel blessed.
Despite all of the support, especially Rob’s support, I do feel quite alone in all of this. Every appointment we go to I am the youngest person sitting in clinic as a patient. I know that I am the one that is going to have to go through the treatment and it’s pretty scary. I don’t know how I am supposed to feel, or react, but right now I figure most things are pretty normal. There are a lot of support groups, even one called too young to have cancer, but I don’t really think I’m ready for a support group.
I got an awesome photo in the mail today. It’s our embryo, just before it was frozen. Seems crazy to get a photo of it, and for it to mean so much to me. But it does.
Alright, 3 sleeps to go. 2 more days of feeling pretty normal, 2 more days before we get to start treatment, 3 more sleeps.