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)

Submissions:

• "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. 

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.

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!

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 chemo...it'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 breastcancer.org, 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!

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.

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 food...as long as it's washed, cooked through, and I skip the alcohol. Sigh.

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?