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?

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!

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!

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!

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!

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!

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, though...it 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, please...be 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!