Sunday, August 30, 2015

Things not to say/what to say to a cancer patient

I'm pretty lucky in that I've insulated myself with great people who generally stay positive and lift me up as I go through this process. However, I know a lot of people don't know what to say when they hear someone has cancer and they end up saying the wrong thing unintentionally (I'm sure I've been guilty in the past as I have terminal foot-in-mouth disease). Some people are thoughtless and say pretty awful things, based on whatI've heard from other survivors. So I've come up with a list of dos and don'ts based on my perspective.

One thing to bear in mind is that being this ill is a very emotional process. Stress, fear of dying, worry about work, money, getting things done, taking care of children, etc. can be a huge weight when you're already feeling like crap. Plus, some drugs cause mood swings. Therefore, you can't use how you would react to something as a gauge, because the patient is in a different place you are--and from where they would normally be. Something that used to make them laugh might now make them cry. It's a mine field.

I think these apply pretty well to any major/chronic illness, so feel free to chime in with your additions if you've been on the receiving end of some of these!

Things not to say to a cancer/chronically ill/etc. patient:

  • All people feel tired/achy/depressed/etc. (true, but probably not on the scale of the person you're talking to, and it doesn't make them any less miserable.)
  • Be grateful you don't have X. (there is always someone worse off; that doesn't mean I'm not allowed to feel mad/sad/crummy about what I'm going through.)
  • You got this illness because...(you are not qualified to decide this and you're probably wrong. In some cases, it's downright cruel--like attributing it to karma, etc.)
  • You should have/shouldn't have...(you can't change the past)
  • You should/should not eat/do/etc... (please don't give advice you're not qualified to give. We have doctors who make their life's work treating our disease, and we've been living with it and probably doing our own research.)
  • Anything that makes their illness about you instead of them (how will I get by without you? etc)
  • My sister/friend/dad/etc. died from that (we know people die from it. We don't need the reminder. We need to stay positive.)
  • I'm going to come visit and won't take no for an answer! (patient may not be up for a visit)
  • Should you be eating/drinking that? (it's not your business, it's the patient's and their doctor's.)
  • You look terrible!
  • You don't look sick. (doesn't mean they don't feel sick, and seems like you're questioning how sick they are)
  • "Don't play the cancer card". People with cancer totally get to play the cancer card, it's one of the few perks of having cancer-you're a card carrying member.

Things to say to a cancer/chronically ill/etc. patient:
  • I'm sorry you're going through this.
  • hugs and other expressions of love and comfort
  • I'm going to X store. Can I bring you anything?
  • Can I cook a meal for you/clean your house/run an errand for you/give you this item of comfort? (offering something specific you don't mind doing is much easier to accept than a blanket offer, although blanket offers are nice, too--just make sure you mean it!)
  • Can I pray for you? (some people are offended by certain religions so it's safe to ask. Personally, I'm not offended by any sincere offer, regardless of the religion.)
  • Sending you positive, healing thoughts!
  • I believe in you.
  • You look beautiful in that scarf.

On the update front, I'm doing well today. Saturday is usually the day I feel achy and fluish from the neulasta, but this time it really wasn't too bad. Michael got me the softest, nicest sheepskin "sherpa throw" and it is so nice and comforting to cuddle with! I took Claritin for three days in a row, starting the day I got the shot, and I think that made a difference. I had a great visit from a dear friend who is also fighting cancer (a different kind), and our conversation was a fun back-and-forth mishmash of my updates, her updates, and commiseration. And love.

Yesterday, I realized the class I'd signed up for at Folsom Lake College started this past week and would be way more work than I'm up to. I dropped it...I'll revisit next year when it's more realistic. :/

Today I'm just tired, but now I know the fatigue is all I have left to deal with. It's always nice to get past Saturday, the last of the worst of it. I think this time was somehow the easiest of the four cycles I've had so far, which is weird but I'll be thankful! I don't know why I'm having an easier time than many others I've read about. I'll count it as a combination of luck, lots of rest, my amazing support system, and following all of the doctor's recommendations. I hope the four Taxol cycles go as well. 

Friday, August 28, 2015

Tired today

My bracelet, with a "love story" book charm for treatment #4
plus stoppers on the end to keep the charms from sliding off.
I'm probably going to have to remove spacers eventually.
Going to keep it pretty short today. I'm tired. I slept really well last night, which is good. My energy is very low and I don't feel up to doing much of anything, although I've done a little work so that's good. I'll probably feel this way for the next few days.

Reading more about surgery and the resulting recovery. Looks like I won't be allowed to lift my arms over my head until after I've recovered from reconstruction. That is a long, long time--next spring at least. Not being able to lift my arms will be annoying and inconvenient at home, but for dancing that is pretty devastating. I'm a little depressed about it. I think I'll be able to do some tango once I've recovered a bit since we don't usually do under-arm turns, but everything else is out. And how can I teach if I can't demonstrate turns? I know, when it's all over I'll get back to normal and I'll be happy to be alive. But for now it sucks. It's a blip in my life, but right now it's a long one.

Go out and do something fun for me this weekend! I'll be laying low...and playing on my new Nintendo 3DS I got to entertain myself.

Thursday, August 27, 2015

Chemo round 4, day 2: doing great!

I love watching this chain get shorter!
They say the side effects from chemo get worse as the treatments go on and the chemicals build up in your system, but so far that does not seem to hold true for me. Although I had a sore on my tongue last week, it was just the one and went away after a couple days. I think the mouth wash I do helps with that, but the doc okayed me taking lysine to help with mouth sores if they get worse. My appetite is still pretty good, although I will say that strong food smells turn my stomach a little and there are certain things that just sound awful. I normally love garlic, but if I get a mouthful of it I can barely get it down.

I had my infusion yesterday, and for the first time I had no nausea at all. I didn't need my Relief Band or any of the drugs. They give me some anti-nausea meds before the actual chemo, so they must have been enough to carry me through this time. I don't know if it's because I was better about boning up on protein and fluids starting on Monday, or my body is getting used to the chemicals or what, but I'm happy!

After infusion we went shopping at Target, came home and rested, then out to dinner. I was tired, which is to be expected, but not to bad, considering. I woke up at 4am today which sucked, but I took a nap and now I'm going to try to get some work done. How did it get to be the end of the month already?? Deadlines are starting to yell at me...thank goodness for fabulous writers who have stepped up their game to take on some of my work or I don't know what would happen.

We celebrated being halfway through the treatments, but don't forget...infusion is just the beginning of the cycle. There's a week of recovery, which is the hard part, then a week where I feel good but my immunity is at its lowest. So while my last infusion will be on October 21, I won't be considered really done until about three weeks later. Our Halloween party will be right at the worst time as far as immunity goes, so I won't get to enjoy it very much. However, we're about a month and a half in with two and a half to go. We're getting there! A friend is loaning me a big wedge thing for after surgery, which is fantastic. Getting some good advice, and starting to prepare for it is helping me mentally stay calm about it.

My blood work was good yesterday. White blood cells had gone up again, which I take as a good sign. My hemoglobin and hematocrit were a little low, but not enough to delay treatment. That's not that unusual for me; I used to get deferred from giving blood from time to time because of it. I'm surprised because I'm eating so much meat to get my protein in. More dark leafy greens and legumes, I guess. My potassium, which was low last time, was back within normal range.

The doc was pleased with the progress my tumor is making. Right before treatment started, it was at 8cm. To give you some perspective, that's a bit over three inches. Last exam, he said it was about 4cm, so a little over an inch and a half. I'd say it's about 3cm now. At its largest, my right breast was a cup size or two larger than the other one. The tumor took up half my breast, plus there was all that necrotic fluid. Very uncomfortable. Now, you almost can't see it except there's some discoloration and a little misshapenness at the bottom.

So, doing really well. Your words of love and support definitely keep me going! It's also really helpful to see progress, and having all our fun rituals make chemo day a celebration instead of something to dread. New outfits and bandannas, the chain link that gets a little shorter each time, the racing bibs Michael makes to commemorate the end of each cycle, etc. I think everything you can do to keep your spirits up when you go through something like this makes a difference. Thank you!

Monday, August 24, 2015

The advantages of neoadjuvant chemo

I was chatting with a friend this morning about how I'm feeling really good right now, and I'm happy because the tumor feels a little smaller than a few days ago--and way smaller than when chemo started. I've definitely responded and made a lot of progress, which makes me happy. My doctor pointed out last time that there is a psychological advantage to doing chemo before surgery ("neoadjuvant"): you can see and feel progress. When you have chemo after, you don't get that.

When I'm on a weight loss or fitness plan and I suddenly notice a pair of pants fit that didn't before, or a top looks better on me, etc., it's rejuvenating. Dieting and training are hard, and getting that reward for your efforts really helps keep you going. Same thing with's hard to know I have to go in on Wednesday for infusion #4, knowing I'll feel like blech for a few days, especially after feeling so good the last few days. But feeling that tumor last night and realizing it's even smaller and softer? Hell yeah, let's go. Let's see how much smaller it can get this time. This will be the last of the adriamycin/cytoxin, then it's on to taxol which is much easier for many people. Plus, this is the longest part of the treatment plan, so it's nice to get it out of the way.

I resisted joining any support groups because I didn't want to hear a bunch of horror stories. I did finally join a couple, the Cancer Survivor Network and the discussion boards on, mostly so I can compare notes on side effects with a large group of people. I've gotten some good info, but of course I've gotten the horror stories, too--more so than hearing the stories of people like me who don't have it so bad. I don't know if I'm extraordinarily lucky to not have horrible side effects, or if people only post when it's bad so you don't hear as much from the lucky ones. Perhaps it's a combination of the two.

So I've been reading mastectomy stories and it's got me a little scared. Not about dying or anything so dramatic, but the week or two after surgery sounds like it's absolute misery. I am not looking forward to it. Of course, that's still about three months off, but I try to think about it, and the resulting changes to my body, from time to time so I can get used to it and not be so upset when it happens. I'm trying really hard not to read about radiation or reconstruction, because that's really far off and I don't need anything else keeping me up at night.

One thing I have to figure out for surgery is how I'll sleep for the next week, because it sounds like sleeping in a bed is not a good idea/painful (maybe because of getting up and down? not sure.) Some women sleep in an easy chair, but we don't have one, nor do I really want to get one. We're going to look into some kind of wedge-type thing that can prop me up, and maybe that with pillows will work. Thoughts, anyone?

Had a really good weekend. Went out shopping and eating and played games and didn't crash, which was nice. The fatigue didn't really last any longer this time than it did for #2, which is excellent because I was expecting it to go on longer based on what I've been told. We'll see what happens this time.

One thing I learned during marathon training is that you need to fuel and hydrate your body starting a couple of days before the event for the best effect. So since I tend to slack on the protein and liquids after the fatigue is gone, I'm making sure to get back on it starting today so my body is strong and hydrated and ready to fight on Wednesday. I have my outfit all picked out and everything. Not looking forward to being sick, but I can't wait to see more progress!

Thursday, August 20, 2015

And back up again

Have I mentioned this disease is a roller coaster? I was feeling pretty down the other day, but yesterday I felt much better. Wednesday is our date night, so I put on my awesome new Rockstar Wig, which I got for free through the Wig4Wig program, got dressed up, and went to Studio Movie Grill in Rocklin to see The Man from U.N.C.L.E. SMG is a movie theater with a restaurant and chair-side service. You walk into the lobby, and there's a bar and cushy lounge chairs instead of a concession stand and an arcade. Definitely a grown up experience! Then, they take your dinner order at your chair and deliver it. Most relaxing.

This was an awesome choice, because we could do dinner and a movie, all at once with the same amount of energy output. Plus, the seats were super comfy and spread out more than a typical movie theater so there wasn't anyone too close to me (remember, I need to stay away from anyone sick, so best not to get too close to anyone I don't know if I can help it). We'll probably go again. I was tired when we got home, but not tired to the point of total exhaustion or feeling sick.

So, obviously I'm in better spirits. I have a few more days of feeling pretty normal until the next round starts. Life is pretty good, for the most part.

Tuesday, August 18, 2015

One month down, three to go....and then some

I haven't felt too bad for the past couple of days. I find myself saying that a lot. "Not too bad!" I say, cheerily. Because "not too bad" is the new good. Getting through a day without crashing and feeling miserable is something to be happy about. It's only been a month of chemo, with three to go. Then, of course, there's surgery and radiation and reconstruction....but I'm trying to stay focused on one thing at a time. But sometimes, that is really damned hard.

Sunday, I sat at the table in our room with Michael and played games for maybe an hour or an hour and a half. I folded a few pieces of laundry. That was the extent of my activity for the day. I crashed around 3:00, totally miserably exhausted. I thought, "I have to do this five more times?" I think of all the restrictions I'm under and think, "Three more months of this?"

Thankfully, I do get a little better every day, and yesterday I got through the whole day with a reasonable level of energy. I didn't do anything physical, but at least I didn't feel miserable.

So I'm feeling whiny. I don't want to cancer anymore.

And then I feel guilty, because you know what? I really don't have it that bad. I have very few side effects compared to what I've read from other women. I'm not pregnant. I don't have little kids or a useless husband draining what little energy I have. The opposite, in fact. I don't have to go through months or years of trying to find the right treatment because the cancer isn't responding. I'm not stressed out wondering how the bills will get paid. All I have to do is sit here and heal, and the treatments are working (so far, at least. Knock on wood). And I'm grateful for that, really.

But it still sucks. And today I'm going to whine about it. And then eat comfort long as it's washed, cooked through, and I skip the alcohol. Sigh.

Friday, August 14, 2015

Getting the cancer thing down

Driving in to my infusion appointment on Wednesday, I had a little bit of an inkling of why people sometimes stop going to their treatments. When you've been feeling good for a while, it's hard to go back in, knowing you're subjecting yourself to more unpleasantness. It's one thing when something happens to you that you don't like, but it's another to willingly make it happen! I'd had two treatments that went well, and surely it will start getting worse now, right?

Surprisingly, no. So far, this cycle has been just as easy as the last two. In fact, the first day was the only day I had any nausea. Like with the first two treatments, I started feeling a hint of it around four hours after infusion ended, so I put on the Relief Band to head it off and that did the trick. At bedtime, I decided I didn't want to wear the band all night, so I took meds and they worked great. The next morning (yesterday), I felt just fine and didn't need anything. Today I'm maybe a little tired, but still no nausea. Score! I got a lot of sleep last night and took a nap this afternoon, so I'm feeling OK and am going to try to take a little walk after dinner. I'll probably feel more fatigue over the weekend and for a couple more days after. But really, this is all pretty tolerable so far. And even if it gets worse, that's less time than I originally thought I'd spend being miserable.

So this was number three of the four treatments that are supposed to be harder, then I switch to Taxol which is supposed to be easier although there's generally more bone pain. It was suggested I take Claritin for that, and also for the pain/acheyness that comes with neulasta so I started taking that yesterday. Usually Saturday is when I start feeling the effects of that, so we'll see if it works. So far, the mouth sores have stayed under control, I assume thanks to the rinses I still do three times a day. No metallic or chemical taste yet, thankfully. The stubble on my head is getting thinner. My nose drips and I sneeze a lot, probably because of thinner mucus membranes making me more sensitive. If I eat anything too spicy, I get a little indigestion but the Pepcid is working great to handle that.

So I'm kind of feeling like I've got this whole thing down, at least the chemo part. I've heard every piece of advice there is about five times, I've got my routine down, and I know what to expect. I think I'm lucky in that it isn't affecting me as badly as it could. I'm getting used to the idea of a bilateral mastectomy...even though I don't know for sure that's necessary yet, I'm feeling pretty sure it will be. Looking forward to watching the tumor get just a little smaller every day. This might sound weird, but I spend a lot of time visualizing the cancer cells dying off and flushing out. I don't know if that kind of thing really works, but it doesn't hurt to try, right?

Wednesday, August 12, 2015

Chemo round 3, day 1

I love watching this chain get shorter!
So far, the first day of my third round of chemo is going well. My doctor examined me and said the tumor feels like it's about 4cm now (originally 8) and is softer. That is great! Half the size after only two treatments! My blood work was good--in fact, my white blood cells have gone up since before treatment started. The neulasta is doing its job. I was a little low on potassium, so they gave me a pill (a huge pill and a half) for that. My glucose is slightly elevated, which I learned can happen with some of the drugs they give me. More exercise!

Infusion was a little faster than the first two times, although things were chaotic today because they computerized all their paperwork into a new system and the nurses were struggling. We got through it, though, and then I came home and have been resting. I have my mountain of ginger and peppermint in various forms, bottles of drugs, and my relief band ready to go as soon as I need them. In fact, I went ahead and put the band on just now because I was feeling a little delicate and I wanted to head it off.

My charm bracelet has grown! One from
my pirate for our 8th monthiversary, the treasure
chest was for my second treatment because
the one I wanted never arrived and he'd ordered
this one, and the keys for our Tahoe trip because
our antique hotel had a real key for the door.
Tahoe was awesome and relaxing. We spent most of the time there sitting on our balcony and watching people play in the sand and water. We watched the sun set and enjoyed the changing view as the colors changed and the stars came out. When things got quiet on the beach, we could hear the Elton John concert at Harrah's! Sunday we went to Zephyr Cove and took a lake cruise to Emerald Bay and back. I love being on the water, so it was absolutely delightful.

The weekend brought a scarfplosion. I only had a couple before, so I wanted to get one in Tahoe as a souvenir. I found a gorgeous teal pashmina and several overpriced silk type ones that I liked but not enough. I wanted something to remind me of Tahoe.

Then on our way out of town we stopped at CVS for the bathroom and road snacks. Next door was a little souvenir shop so we stopped in...and found one I loved, blue with fishes on it. for just $10. How could I pass that up? So I came home with two. Then I had packages in the mail...the two pirate bandannas I posted on facebook for us to wear today, a pre-tied blue one from Good Wishes Scarves (one free for cancer patients), and one from a friend--a lovely blue silk infinity scarf with the words "Not all superheros wear capes...some wear scarves." The latter was a gift from a sweet friend. It made me all misty eyed. So now I have a bunch of them to wear! Yes, I'll post pics on facebook when I wear them. :)

Tonight is date night. Keeping the magic alive, no matter what!

Friday, August 7, 2015

Cancer is complicated

We cancer patients talk a lot about all the doctor's appointments, diet restrictions, changes to our bodies, side effects, treatment options, how every cancer--even in the same organ sometimes--are different, etc. It's a complicated subject. And then sometimes you run into situations where you realize it's changed yet another aspect of life.

Michael and I decided to take a little trip up to Lake Tahoe this weekend. Just Saturday and Sunday, a little away time together to connect, relax, and enjoy some beautiful scenery. Normally, packing for such a thing would be a breeze. One change of clothes, toiletries, and go. If I forget something, who cares? It's two days.

Not with cancer. I have to make sure I cover every contingency. I don't normally have any pain, but I don't want to leave the meds at home, just in case. And a sleeping pill, because I can't always sleep in a strange place and I can't afford to lose sleep. I cannot forget sunscreen. Something to cover my head. Should I bring the wig or just wear a scarf?

I have to figure out how to bring salt and baking soda so I can do my mouth washes--and I can't blow them off while I'm there or I'll regret it. Better take some floss, too. Snacks because I need to make sure to get enough protein. What else?

Anyway, it'll be fun to get out of this house and breathe some different air. Pretend I'm not sick, although I have to make sure I don't overdo it and wipe myself out. Looking forward to it! I'll have my phone so I'll still be accessible, but I think I'll leave my computer at home and not do any work. It can wait a couple days, and so can this blog.

Have a good weekend...I know I will!

Thursday, August 6, 2015

Went to genetic counseling

So yesterday I went to genetic counseling. It was pretty interesting. Before I went, I had to fill out a 10-page (something like that) questionnaire about my current and past health, my family members, and if any of them had cancer. Thankfully I have a small family!

She explained the risk factors for having the BRCA 1 or 2 genes, which are basically mutations if I understood correctly. I was under 45 at the age of diagnosis and have a rare form of cancer--triple negative for all the hormone receptors, which is more common with women of Jewish descent, which I am not. Yay...I'm rare. However, this type is very common among women who have the gene.

Anyway, add to the fact that there are very few women on my father's side and the other one in my immediate family had ovarian cancer, and I'm an excellent candidate for getting tested. I already planned on it, but she made it sounds like it was a hard decision for some people. Really? Why wouldn't you want to know? Because of my risk factors, insurance will cover it. Of course I want to know. She also said that in 2013 scientists identified a bunch more mutations they can test for. They don't know what they mean or what to do about them yet, but I figure it's only a matter of time before they do know so why not get the test done and go from there? So they'll do the blood draw next week when I'm doing labs anyway.

If I have the gene, the chances are high that I can develop cancer in the other breast. There's also a chance I could develop ovarian cancer. I can prevent both of these from happening by removing them. A bilateral mastectomy, and then whenever I'm cleared to move forward, an easy procedure to remove the ovaries. The latter is not a big deal to me as I'm not having any more kids and am on the brink of menopause anyway. The former is sad, but I'd rather do it now than go through all this again. I've thought about this quite a bit before anyway and will continue to do so. The decision isn't final yet and doesn't have to be for a few more weeks.

I won't get the results back for about 5 weeks so I'll post when I get them.

While we were sitting there waiting for the counselor, I was examining my nails. They're longer and stronger than they've ever been. Maybe because I've been eating better? However, they looked dirty, which is weird since I don't, yanno, do anything. Then I realized...they're not dirty, they're discolored. Just a curved line, right where the nail separates from the bed. This is common with chemo and I wondered when it would happen. They also ache a little. I put on some nail polish to cover it. I might have to cut them shorter for comfort, but I'll enjoy them for another day or two first.

My energy held up all day yesterday and pretty well the day before. I should be in pretty good shape until the next treatment. Sometimes I feel like the mouth sores might be coming on again, but I do the mouth rinse and the feeling goes away. That makes me SO happy. I see a huge change in the affected breast since before chemo started. All the fluid is gone, it's much smaller, and the lump is softer. I still have hair on my head and it's growing, but clearly getting thinner. Sorry for the TMI, but...let's just say the carpet is much thinner. My eyebrows seem more delicate, and since I don't pluck them I think I've lost a few hairs there. I think my eyelashes are mainly intact, though.

That's all for today!

Tuesday, August 4, 2015

Feeling thankful

I tend to live with an "attitude of gratitude" in general anyway, but going through this journey has highlighted for me even more how very lucky I am. I am in a situation where I am taken care of--financially, physically, and emotionally--and only have to work as much as I feel capable and when I feel up to it (I do have deadlines, but I've pared down my workload quite a lot--thanks to colleagues who are taking on a lot of work for my sake). I have coverage that is paying for my medical expenses. I have an amazing support network. I am surrounded by love. I am generally healthy (other than the cancer), and that will help me fight.

What are you thankful for today, dear readers?

I talk to a lot of people who are currently fighting cancer or a chronic illness, and many of them choose to keep their battles secret. This is their decision to make, they have their reasons, and I make no judgement. Or perhaps they are not so secret, but they face struggles I do not: financial problems, small children to take care of, unhelpful spouses (or no partner), complicating health issues. I think of them often and send them prayers and well wishes, wishing I could do more.

So maybe, faithful readers, we could just give an anonymous shout out to my fellow warriors who could use a little pick-me-up? Words of love, encouragement, strength, whatever you want to offer. I know I would appreciate it!

As for me, I'm doing pretty well today. Yesterday started out well, but I crashed energy-wise around 2:00 and had to cancel on a friend who was going to come visit. It sounds like this will be the pattern: nauseous for the first three days (getting better as each day progresses), then achiness from the neulasta shot, then fatigue for a couple days and then I'll feel pretty good until the next treatment. From all I've heard, those days of fatigue will get a little longer each time with fewer good days. That's a pattern I can live with. It's good to know what to expect. I need to make sure I'm as productive work-wise as possible in the mornings, when I have the most energy and focus.

And now that I've done quite a bit of work and this blog, time to get some rest!

Sunday, August 2, 2015

In other news: cancer sucks

So, I spend a lot of time in my room, lying in bed, watching TV, looking at the internet, doing a little work on my laptop. I have to admit getting waited on hand and foot is not objectionable, but I get tired of the things I don't get to do. Gatherings I don't get to go to, dances I can't attend, places I can't go because they are likely to be crowded, things I'm not allowed to eat.

Today Michael's daughter went to a wine and cheese shop. I am not allowed to drink wine. She brought home like four kinds of brie cheese. Knowing chemo patients have restrictions on certain kinds of cheese, like bleu (sad face), I figured we should look up whether I'm allowed brie. Guess what? NO. No soft cheeses, like brie, camembert, or feta. AAAAARRRRRRGGGGHHHHH!!!!  I love all those cheeses! I demanded nachos made from cheddar (allowed) in compensation.

When I'm done with chemo and my immune system is recovered, I'm so going to eat and drink my heart out. Sushi, soft cheeses, rare steak with bleu cheese on it, alcohol. It's going to be a day of feasting to put all feasts to shame. And then I'll probably throw it all up since I won't be used to eating that way. How ironic would it be to get through chemo without throwing up, then do it when I'm all done?

I'm doing OK today. A little weak and tired, but overall, not bad. Last night I had some pain in my hands and face--the neulasta shot spurs white blood cell production, and that occurs in the bone marrow so sometimes there's bone pain. I snuggled under the electric blanket next to my sweetie (who I'm sure really appreciated the heat but was too sweet to complain), took a norco, and watched Sherlock. By the time it was over I felt a bit better. I took a hot shower and put a warm wet washcloth on my face, and that helped, too. By the time I went to sleep I felt fine, and I don't really feel any pain today. I suspect tomorrow I'll be in pretty good shape, and then I'll have a reprieve until the next treatment. Except I still can't eat soft cheese. :/ Currently, no mouth sores or metal taste or loss of appetite, so that's good.

Genetic counseling on Wednesday so I can find out whether I have the BRCA gene. This tells me whether I'm at a high risk of the cancer returning and will play into my decision of whether to get a double mastectomy. They sent me like 10 pages of questions to answer about my medical history as well as my family's, so I'm working through that a little at a time.

I hope you're all having a good weekend!

Saturday, August 1, 2015

Chemo cycle 2, day 4

So far, I'm holding up pretty well. I seem to be past the nausea now, although yesterday I did the Relief Band about half the time and meds the other half because I got tired of wearing the band. It's a pretty awesome thing, cut WAY back on the amount of anti-nausea meds I had to take. Highly recommended!

I was able to get on the computer for a little bit yesterday and did a little work, although not much--partly because my computer was tied up for a couple hours updating to Windows 10 (so far so good on that, btw). I'm going to do a bit today, too. I slept for almost 11 hours last night, which was fantastic since I often don't get enough sleep. Today I feel weak, which is not unexpected, but so far I'm OK other than that. Last time I felt achy and fluish in the afternoon from the Neulasta shot (boosting my white blood cell count), so I have an electric blanket ready to go for comfort should I need it. My appetite has been good, no mouth sores or funny taste and for that I'm thankful.

Today I'd like to talk a little bit about advice and good intentions. Here's the thing...I know y'all want to help, and that's really great. I appreciate it. I know you have good intentions. But there is a lot of bad advice going around out there. If I blindly follow advice and it interferes with my treatment, it doesn't matter how good the intentions behind it were, does it?

Some of it is based on some research you may have read, but you have to be careful about that. One research paper doesn't necessarily cover all the implications, it could be skewed by the researcher's agenda, it may not apply to my type of cancer or the drugs I'm taking, etc.

Some supplements may actually interfere with my treatment. It doesn't matter if it's natural. For example, too much vitamin C can fight the chemo drugs. Turmeric interferes with some but not others, so I'm trying to get an answer from my oncologist on that. Believe it or not, I'm pretty invested in my own recovery, so I'm doing everything my medical team tells me, plus doing my own research.

One thing several people have harped on is not to eat sugar, even fruit, because it "feeds" the cancer. Click here to read what the Mayo Clinic has to say about that. There is a lot of stuff going around about this and a lot of conflicting information. Should I cut down my refined sugar? Yes. So should most people. I do try to do that. but as stated in this piece, our body needs the natural sugar for energy, plus there are great benefits from the various nutrients in fruit. Some have antioxidents, etc. I have  nutritionist as part of my medical team and she has not told me to stop eating fruit.

So, careful about jumping on every piece of research you read. Just because it's on the internet doesn't mean it's good advice. Just because there are truths in an article doesn't mean they aren't spun to help a certain agenda. Sometimes, they make something sound bad but there really are no implications. Plus, sometimes we jump on a fad because of some research, then other research comes out saying maybe that food isn't so great. We used to think soy was the best thing, now we're learning it's maybe not so good for us, especially menopausal women. Eggs have gone in and out of favor. At one time we thought margarine was better for us than butter. There have been others. The science of nutrition has come a long way, but there are still a lot of gaps and uncertainties. You have to decide what is best for you, and I have to decide what is best for me.

That's my rant for today. I'm in good spirits, smiling and laughing often, enjoying the process of getting my stuff slowly unpacked and settled in my new home. I'm well cared-for and comfortable. I love getting your messages in all forms, be it cards or texts or facebook or whatever. They make me smile and feel loved. The cards are going up on the wall where I can look at them and smile.

People keep saying I'm brave for sharing my story with the world, but honestly, I lean on every single one of you. You are helping me be strong and brave. I don't know how I could have gotten through this if I'd chosen to go it alone, so thank you!