Still Tired… Anemia Sucks

Today I walked out onto my patio, snipped some stems off my pineapple sage plant, and had to sit down. Really HAD to sit down as I was dizzy and seeing little stars. I’ve never been faint in my life… one more first; thank you chemo.  Tomorrow I have to go see the doctor because I’ve been dizzy like this for the last four days, and in addition to becoming dizzy just walking to the bathroom, my heart is periodically racing which is scary. I think it’s the anemia causing it, but I can’t be sure, and my regular doctor is a bit worried, so she wants to see me. I hope it’s the anemia, because I don’t want anything else that’s serious going wrong with me.

Another thing annoying me right now is the neuropathy in my finger tips. It’s actually starting to be painful in certain fingers. It’s weird because I thought I would have a lack of sensation, but instead it’s more like constant sensation. My tongue feels the same way, and it’s really annoying sometimes. Sometimes I can kind of block it out, but when I’m just trying to relax it becomes a menace. I guess I’m lucky thought that this hasn’t gone on the whole time, and it’s almost over. I’m ready for it to be totally over to be honest.

I think I want to take myself to the spa after this is all over and soak in some sort of healing creamy muddy something… whatever they do for you at the spa. I definitely need some attention. I had a rash on my leg the other day and one on my side earlier in the week; they’ve cleared up since with some zinc ointment, but honestly I feel like I’m disintegrating some days… hair falling out, skin flaking off, dry mouth, mouth sores, chapped lips, dizzy spells… I’m like an ad for unhealthy. I need something to rejuvenate me after all this yuckiness. I think I want to go find a tree in the rainforest for a few months and hang out with some monkeys.

Roasted Pumpkin Ravioli… yummm

I’ve been so hankering for some roasted butternut squash ravioli with brown butter, sage and toasted pecans… so last night I roasted my squash and today I made some. Though my pecans tasted off to me so I toasted some hazelnuts to sprinkle on top instead, still it was delicious. It’s funny I kind of made up my recipe after seeing this dish on a menu at a restaurant. I absolutely love pumpkin and squash, and I was hugry that day for something I had never had that was vegetarian, well my fancy was taken just by the name on the dish… unfortunately the promise of their pumpkin ravioli was not delivered. The dish came out tasting like flavorless pasta dough; I couldn’t detect a hint of sage even. I even had my hubby taste it and he said the same thing. I tried angling for some shaved parmesan to add a bit of flavor, and then some salt & pepper, but it was pretty hopeless… but that got me thinking. What WOULD I like in a pumpkin ravioli?

So, about a week later I bought myself half a butternut squash roasted it with a bit of nutmeg and paprika, and made a really lovely pumpkin puree.  After that I just played around with flavoring it until I stumbled on my recipe which contains a bit of shallot, a hint of garlic, a little nutmeg, ricotta cheese, parmesan and a hint of sage, a dash of orange juice and a dash of orange zest in the filling, a little of the toasted nuts, plus a bit of bread crumb and egg to bind it. I absolutely love it! I’m still a bit new to pasta making though, and I’m constantly looking around for a nice, easy recipe. I didn’t hit on it this time though; thankfully I was able to save the dough, but initially it came out so dry I couldn’t even roll it. Egg yolk to the rescue, but after kneading that in I had to rest the dough again. No fun, I was hungry by then I’ve actually added a recipe to the site because a lot of people seem to search for it; it’s under the recipe section Roasted Pumpkin Ravioli with Brown Sage Butter and Toasted Pecans.

I guess I must be the weirdest cancer patient. Everyone keeps thinking I’m not interested in eating; that’s never true; some days nothing sounds good, or what sounds good my mouth can’t take, but most of the time as long as it’s something delicious, I’m very interested in eating. Textures are a little more important to me now. I really love crunchy & I have to stay away from it a bit because cuts in my mouth take forever to heal, and I guess I am a bit picky. I like my veggies fresh and only very lightly cooked, and I’m partial to Thai, Vietnamese and Mediterranean cuisine, oh and some Carribbean, when I was in Florida I was introduced to stuff like yuca, plantain some special kind of rice dish and cuban bread. I guess I really like spicy foods and that’s something I miss through the chemo. The slightest bit of chilli or jalapeno or anything sets my whole mouth on fire now. I had a few thin slices of red chilli in the Pho I had the other day and thought my head was going to pop off, but I so can’t wait till my mouth can take the heat again.

Why having a low red blood cell count stinks!

I have to say I never really understood much about anemia before I had this illness. I just thought it was something you got if you were a vegetarian who didn’t manage your iron intake… well how wrong I was. It can be a symptom of an iron deficient diet or it can be a symptom of internal bleeding or it can even be a sign that you have a blood cancer… like me. The thing that stinks is that with anemia your blood isn’t carrying enough oxygen so you fatigue easily. A low red blood cell count is a form of anemia; chemo destroys some of your good red blood cells and can impede your body’s ability to create new red blood cells.  My red blood cell count was low last week prior to chemo, but not enough to warrant a transfusion.

As of today, I have no idea what the count is, but I am severly fatigued. I have been for the last two days actually. Just standing up makes me dizzy, actually walking somewhere, like the kitchen, or the bathroom, requires a rest. Today I went into work to pick up an antenna for my NextG card, and just standing and trying to talk to my co-workers made me need to sit down; it also made me so short of breath I had trouble talking, and it made me break out in a sweat. I have honestly never experienced anything like this. My ability to exercise is now pretty much non-existent, but I should improve. I’ll have an extra week between this round of chemo and the next, so my body should have a chance to make some blood that doesn’t get destroyed… I hope this happens really soon, because I am hating this. Rolling over in bed is making me breathe heavy, that is wrong. It is so weird to be so close to the end of this, and still two more rounds of this nasty treatment away. It’s strange to hate something so much and be so indebted and grateful to it at the same time, and I really HATE chemo, but I really, really love what it’s done for my tumor.

All in all, cancer stinks, but I’ve really gotten to learn a lot about my body and how it works, and a lot about what the word tired means; all things said though, I can’t really recommend it as a learning tool .

The computer woes just continue…

Ugh, this silly laptop is just causing me no end of grief. I’ve had to reinstall everything again, and I’m only half way through at this point. I have to say though, this is not a good time for messing with computers. I’ve been a bit queesy today and tired, though thank heavens in spite of this machine I haven’t been cranky. Luckily I’m not too foggy after this round of chemo to mess around with installations. I do wish my side effects were a bit more predictable though. I thought I was doing very well yesterday, and today rolls around and kicks me in the pants. Some of it I guess is my neulasta shot. It apparently helps my bones produce more neutrophils (a kind of white blood cell) to help fight off infection etc, but it does make me a bit tired I find and it sometimes makes me achy. Hopefully tomorrow will be good though.

I wish I knew a bit more about how chemo works. I can’t figure out whether now that my tumor is gone the rest of me will feel worse or better. I mean will the chemo be more toxic to my good cells now that it doesn’t have any tumor to fight, or will more of it just leach out of me without incident. I don’t know if part of the reason I felt so bad early on was because the tumor was dying and my body was having to resorb the dying tissue and get rid of it, or my body just went through some nasty stuff when it first encountered all that toxicity. Maybe now it gets used to it more easily because it’s encountered it before.

So many questions, so few resources… I knew I should’ve been a doctor. I’m also very curious about my pelvis healing itself. I can’t wait till I can see the new bone in an x-ray. I’ll try to post that with a copy of my moth-eaten pelvis if I can figure out how to scan a copy of an x-ray.

Computer Woes

Ugh, I’ve had the worst time with my laptop over the last few weeks, and Wednesday Dell’s advice was reinstall the operating system. I have an image of a fresh install so it didn’t take as long as it could have, but I also have to install all my development software PLUS all of the windows updates for each product… in short… a nightmare   It took most all of yesterday; I even took my laptop to chemo with me and worked on it there.

Speaking of chemo… the nurse was nicer this round and didn’t give me the doxirubicin and vincristine together like the last nurse did, that made me kind of ill during the chemo the last time. Sucks that my mom was in town for the nasty nurse and had to leave before I got my tests back. I know she would have been so much happier and would’ve felt so much better going home if she knew I was back to normal. Now that I know the tumor is gone, I’m so excited to get back to my life. This has been such a whirlwind. I can’t believe some days that it has even happened, and I can’t believe how fortunate I am that everything has gone so very well for me. I really feel blessed some days (even the days when I’m a hideous grump).
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It’s a little trying now to think I have to wait through two more rounds of chemo before I can really start rehab on my leg. I accidentally got excited and jumped earlier today, and then had a mini-freak out on myself for being so stupid. This is why I should wear my crutches around the house I guess. I’m feeling so good in terms of my leg and hip most days, it’s easy to forget that my pelvis is still weak and JUMPING of all things could cause a crack or worse a CRUMPLE. Still it’s hard to contain yourself at times when you have such excellent news. I also seem to be handling this round of chemo a little better. I didn’t need any extra anti-nausea drugs yesterday, and I’ve only needed my standard post-chemo dose this time. My tummy isn’t causing me any worries… I’ve stuck by the whey protein shakes (I make them with low-fat greek style yogurt (basically strained yogurt… that makes it creamier & less runny) & frozen berries and they’re not that bad). My mouth is still a strange land. My tongue just hasn’t felt normal in forever. I can’t quite explain it but it just feels all the time like if you were sticking it to a 9-volt battery. I can’t get used to it. I’ve had the doctor look at it, but he can’t see anything wrong with it. To me it feels a bit like the neuropathy I have in my thumbs and two middle fingers… a kind of tingliness. It doesn’t seem to interfere with my ability to taste things, other than salty things seem unpleasant.

I never got around to my chocolate fondant comparisons, but I will. I’ve been flat out with work, luckily I finished troubleshooting a nasty bug this week and everything’s working now, and I have the weekend free! I like a free weekend. Instead of chocolate fondant though, I got an urge for Vietnamese Pho (a kind of beef noodle soup). While my mom was here we went to the city one day, and the place I used to get my Pho had closed down. A friend’s wife, who is Vietnamese, had given me a recipe, but I’d always heard that making the broth for the soup is considered quite an art in Vietnam, so I was a little intimidated to give it a try, that plus the fact my husband isn’t exactly crazy for soup put me off making it for awhile, but I got the urge earlier in the week and bought some oxtail and beef shins (exotic cuts for me). For the broth you take a couple of whole onions and a four inch stem of ginger and roast them on the grill to bring out their sweetness, and you toast your spices (cinnamon, whole cloves, star anise) before tossing them all into your stock pot. I’ve read up a bit and apparently the trick to a nice clear broth is to do an initial boil of the shins & oxtail then rinse them well to remove impurities that might cloud the soup.

Anyway, it takes about five hours to make the broth, and it turned out lovely. I think it was even better than pho I got in the city. The only thing I was missing was some thai basil… mine has died back (had to settle for greek basil… it’s still going strong) and vietnamese mint… because mine was in a bad pot and died (had to settle for standard mint)… but it was still delicious. It made something going on about 3 litres, and it’s all gone. My husband even enjoyed a bowl. I have a bit of a crave for more orange sherbet, so I think that’s what I’ll make this weekend. However, I will do the fondant comparison SOON. I have a longish break between this round of chemo and my next (not until May 13! YIPPEE), and I have a good friend who enjoys chocolate… so I think I’ll have a bit of company around and share up the fondants. I will post results though. I’m also dying to make some butternut squash ravioli. I have some beautiful sage growing in the garden and I adore squash ravioli tossed with sage crisped in butter… hubby splurged on a pasta maker for my kitchenaid mixer at Christmas, that AND the ice cream maker attachment… I must’ve been a really good girl in 2007.
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I must be getting better, my appetite is definitely stronger this time around… I can’t wait till I can go spoil myself rotten on sushi (that’s why I’m working so hard… saving up for a sush-a-thon). Close down the restaurant, there won’t be any fish for the other diners! I so can’t wait. Just a month or two away now.

I want to thank everyone who reads this for the support and kindness they’ve shown me. Some people have offered some great advice on dealing with the side effects of treatment and some people have offered so much emotional support and some people have offered both. It’s amazing how generous and supportive people can be, even when you’re not really looking for it. In any case the outpouring of support I’ve received has really made this so much easier to get through, thank you again to everyone.

I’m Clean

Yippee I got my scans back today and they’re clean. The tumor is all gone! I’m so relieved and happy. On top of that I only have to do two more rounds of chemo and then they’re planning to take some stem cells from my bone marrow or something along those lines in case of a relapse; I’m going to have to research that.

Also good news… my port bled today so no more needle holes in my arms today, and I made them take the needle out of my port before they sent me home today. I didn’t mind so much keeping it in over night, but I have had a reaction to every type of dressing adhesive they’ve tried, and this time it still hasn’t completely healed, in spite of neosporin & paw-paw ointment, so no more torturing my skin.

Well I’m totally excited and happy, but my cat is begging for some attention & since I’ve been out all day I think I’m going to indulge him.

Results Tomorrow!

Tomorrow I’m set for day one of chemo round 4, before which I will be getting the results of yesterday’s CT & PET scans and the final determination of how many rounds of chemo I have to go through… I’m still praying daily it’ll only be three more.  I shouldn’t hate it so much, it’s obviously working, but I’ve never encountered anything that made me feel so mortal. Shortly after treatment I feel so weak. I think that’s the worst of it; that and the stomach stuff. Not necessarily the nausea that I had anticipated, but just general trouble digesting… a gamut of issues from indigestion on through. I can see why they worry about chemo patients and nutrition; some days it’s just really hard to think about eating.

I am really excited to get the results of my test though; I think the tumor is nearly gone. I can cross my right leg over my body (haven’t been able to do that in YEARS, and I’m really flexible… it just felt like something was blocking it… and something was), I also hadn’t been able to rotate my leg inward, it kind of tends to rotate outward, but now I can. Plus I’ve been doing wall squats with a ball, and some light walking, and I’m just astonished at how much strength and how little pain I have. I’m still afraid my pelvis might crumple (that’s the bone doctor’s words… crumple… like the quarter panels on a car… I have a crumple zone), but I’m starting to think the bone has already started strengthening. Soon I’ll be kickboxing Watch out mui-tai competition!

I wish I could get a massage. I’ve been getting the worst cramps in my right foot and calf. Plus my shoulders are tense from being annoyed by my work laptop (ohhh NextG, you’re going to be the end of me…). I had no idea it’s no good to get massages if you have a tumor, at least in the area of the tumor, apparently there’s some fear that it could cause the tumor to spread. I don’t know that that’s true because I think I’ve had this for at least two years, and I had about a massage a month during that time… focused right on my tumor area, though I guess it would be hard to actually rub the bone considering my size. Anyway, I won’t take a chance with it now, but gosh I really would love at least a shoulder massage right now

Test Accompli

I had my CT & PET scans today. I won’t know the results until Wednesday, but that’s alright. I am wiped out though. I wasn’t able to eat for 6 hours before my scans which were supposed to start at 1:30, so my last meal was 6:30PM the night before & I didn’t get out of the clinic until after 5:00PM today. By that time, the petscanner looked like a giant doughnut, and I was ready to take a bite. The other yucky thing they did was make me drink a litre of goop. When I’m really hungry, drinking a lot of nauseates me… and today was no exception, but I do feel much better now. Just SUPER TIRED.

Happy Birthday To Me!

Today’s my birthday… yippee I’m 41 today! I love my birthday. If it were up to me it would be a holiday & people would have time off and everything. It was a great day, except I had to take my mom to the airport & see her off to the states, and I miss her. It would’ve been better if she could’ve stayed and we could’ve had a party for my birthday, a three person, one cat party, but a party nonetheless.  I was going to make a chocolate fondant for my birthday… two actually one based on a recipe by Gordon Ramsay the other based on a Philip Johnson recipe… I wanted to compare what each had to offer & see which I preferred, but I was a little too tired, and instead I spent the better part of the day reading and lazing around the bed with my husband watching TV. Tommorrow though… fondant. They’re small so two of each won’t be too terrible. I’ll take the extra’s around to my husband’s best friend Mick. He loves my passion for making desserts. He was recently the beneficiary of two litres of mint chocolate chip ice cream, and he loves my lemon meringue pies and said my first pavlova was the best pavlova he’s ever eaten (I live for compliments, so I feed him; he feeds me   my husband’s only flaw is that he hates all forms of dessert… no cakes, no pies, no custards, no trifles, no cream puffs, no eclairs, no tarts, no truffles… you get the picture the man doesn’t like sweets, and I LOVE making them. I make all of the above. love love love making pastry from scratch, making cakes, pies any beautiful looking dessert, and I have to give them away so I don’t weigh 10,000 lbs.  Oh well, I can imagine a lot worse, and anyway, I like making fresh bread by hand as well and he LOVES bread.  I even have some beautiful 70% cocoa solids callebaut chocolate… Gordon prefers Valrhona, but I did a taste testa at a local chocolatier, and I just adore the flavors of callebaut, so my fondants will be callebaut.

Anyway, I was planning the fondants as a replacement birthday cake for myself, but I wasn’t in much of a sweets mood, plus being tired. I wasn’t in much of an eating mood today actually. My tongue is hurting, and I just couldn’t be bothered fussing with chewing and all that today, so it was a yogurt/toast kind of a day. Though I do have some lovely green beans in the fridge… to much chewing for today How lazy is that… sorry folks… too lazy to chew today; can’t be bothered with the muss & fuss of chewing my own food, too much effort. That sounds so ridiculous I know, but it’s my birthday; I’m the birthday princess & I say chewing is too much trouble. Ha! I should’ve made creme brulee, that doesn’t require much in the way of chewing, but it would’ve got in the way of my lazing.

I’m off to laze a bit more, and enjoy the last few hours of my birthday. Hope everyone else had a great day too.

Bye Bye Mommy

I’ve decided that at some point after chemo my body just realizes it has been poisoned and goes to violent lengths to attempt to expel the toxins, and it seems like day 7 or so is it. I’m just going to have to prepare myself for it from now on, as much as is possible in any case. I’m still a bit shaky from it today, but all in all much better than yesterday. I don’t feel the typical nausea I associate with the days just after chemo, but I feel a strange uneasiness in my stomach and have random bouts of cold sweats and light headedness. I don’t really believe my anti-nausea medication would help, but I do think just spending the day at rest will, as any activity at all seems to make the dizziness & cold sweats much worse. My doctor seems to think I should be recovering by day seven and it shouldn’t be all that bad, but I don’t guess he’s been through chemo himself.

I did learn this week why they tell you not to floss during chemo… I truly enjoy flossing and brushing and all things about keeping my mouth tip top, but if you floss during chemo your gums will go mad with inflammation, as though you’d never flossed before. I thought I could go the whole time without flossing, and I’m trying just to push through because not flossing makes me crazy; I like my teeth to be clean. I am going to be a little more gentle and I’m rinsing with a mouth wash that’s supposed to help with sore gums, and I’ll see if that works. I hate that I’m getting little sore spots in my mouth though. It’s probably one of the worst parts of this. There are some lozenges that are supposed to help though.

On a sadder note, today is my mom’s last day in Australia. She flies out tomorrow morning. I’m going to miss her. I wish she could’ve stayed a few more weeks, or until this is all done, but that’s asking a lot. Still it would’ve been nice . It’s good having your mommy with you when you’re sick, even if you’re 40 (or 41 as of tomorrow). Her leaving does end up being a super crap birthday present to me though, as she flies out on my birthday. Bad timing mom At least we had a real good time being together while she was here in spite of the fact that she flew nearly 24 hours to an amazing country that she couldn’t do much visiting around because I’m a sicky, but that should be incentive to come back!

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