Thursday, July 30, 2015

Chemo Cycle 2, Day 2. So much to catch up on!

Two down, six to go! Warrior style!
I had a headache all day yesterday, so I didn't even get on the computer. So, I have a lot to catch up on!

The head shaving party was fun. Most of the pics are on facebook or will be posted when I can wrest them from Michael's phone. Quite a few people showed up, we chatted, shaved my head through much laughter and sarcastic remarks, ate, and watched Hairspray and laughed some more. A lock of hair is currently lying in state in a tiny coffin, next to a bouquet of flowers and a headstone that reads "Hair Today, Gone 2Morrow". I love my friends and family.

I'm still getting used to feel of my head. She used a #10 blade, which left maybe 1/8" of hair. It feels funny when I touch it, shift on the pillow, get it wet, when I wear a scarf. But, I have to say I'm enjoying it even though it's not something I would have done by choice. All the compliments I've gotten haven't hurt, so thank you!

The buzz cut makes me feel like a warrior. The kids said I look like Furiosa from Mad Max: Fury Road. I'll take that! I wore the red bandanna I got for free from the Look Good Feel Better class to chemo. I think that might become another ritual--get a new bandanna for each treatment. I'll wear pretty scarves and wigs other times, but for treatment I'll do the warrior thing. :) I like having all these makes something that could be difficult more of a celebration. Same thing with having a party for my hair. If I'd done it alone, I think I would have cried. Instead, I laughed and enjoyed it.

Click here to see the video!

Chemo yesterday went well. I didn't get much sleep the night before--my pattern of waking up too early, unable to go back to sleep. I asked the doctor for a prescription for a sleep aid, plus some Ativan that helps with nausea, anxiety, and can help with sleep. They ran my blood panel and everything looked pretty good, although I was very slightly low on a couple things and very slightly high on another. Not enough to be alarmed or delay treatment. I'm going to look through the literature from the nutritionist and work on my diet some more. I think I mostly need to get more dark green veggies.

I was much less anxious this time, knowing what was going to happen. It took less time, and I slept through some of it thanks to the Ativan they started my IV with. The port didn't hurt so much since it's basically healed. Then I went home and slept some more. I had a headache, but other than that felt fine.

The first chemo cycle, I'd started feeling queasy and hit the anti-nausea drugs four hours after treatment finished. Yesterday, I felt just a little delicate at that point (not even queasy), so I decided to start with the Relief Band, which delivers a little electric pulse through my wrist. I used conductive gel and a low setting. I also put on some peppermint oil, on my navel and the back of my neck. No drugs. Felt fine, good appetite and ate well. We had tacos for dinner and they might have been too greasy, but they were good!

The relief band held me until about 11:45, when it was starting to lose conductivity. I could have applied more gel, but I didn't think I wanted to wear it all night so I took it off and took Ativan, hoping it would hold off any nausea and help me sleep (the insurance company made a stink with the sleep aid because it's in the same class as Ativan, so the pharmacy had to call the doc and it'll be a day or so). It didn't. The nausea came on, and the minor heartburn and indigestion I'd felt earlier in the evening (thank you, tacos) got worse.

I took all manner of ginger and peppermint and tums, and that kept me from throwing up, but the nausea was still there and I didn't want to go to sleep until it was under control. So I took a Compazine and more ginger and peppermint and tums. Finally, at about 1:45am I put the Relief Band back on, with conductive gel, and turned it up a notch. Nausea was gone within a minute, but not the heartburn/indigestion. More tums and propping myself up on pillows, and finally I felt like it was all under control enough to fall asleep in a normal position.

Woke up at around 7 this morning feeling OK, the Relief Band still working. I turned it back down to level 2 and it's been holding great without reapplying the gel. No meds today whatsoever, although I've had some peppermint ginger tea and applied peppermint oil just for good measure. I went back to sleep after breakfast and slept soundly for a good 3 hours or so. Now, I feel well enough to do some work and this blog. Yay!

This afternoon, I get the Neulasta shot to boost my white blood cells. Hopefully it's no worse than last time, when I just felt a little fluish for a day or two. The fatigue is really not bad so far, but we'll see how the next couple days go. My appetite is still good, which is important for healing and maintaining my strength.

I suspected this time would go a little easier because I was feeling much better going into it. I'd been highly fatigued and unwell and in pain for a good month before the first treatment, but this time I'd been feeling really good for over a week.

Onward and upward!

Tuesday, July 28, 2015

Going, going, gone

I've been awake since 4am for no particular reason. This is a pattern of mine...go to sleep, wake up to use the bathroom and can't go back to sleep. Sleep aids don't help. Hopefully after I get this written I'll feel sleepy and can get a few more hours in.

Sunday I reported I hadn't noticed any hair loss. That night, I realized my hair kept tangling/matting. When I ran my fingers through to detangle it, a few hairs would come out. I wondered if it was beginning. Yesterday, it got a little worse. Every time I ran my fingers through my hair, there would be a tangle or two and hair would come out. I could grab a lock and run my fingers down it, and hair would come out. Definitely more than what I would normally have. And, I think my dancer and horse friends will understand this feeling: it felt like I'd had my hair in a tight bun all day. A mild, but annoying, ache.

So I had to make a fast decision, because I had hoped to hold onto my hair for as long as possible but shave it once it started to rain and drive me crazy--before it started falling out in clumps and looking awful. However, my next chemo treatment is Wednesday-tomorrow-and after that I won't want anyone to touch me for a few days. So I decided I'd better take care of it today.

Michael's daughter had a fun idea: that we should do a funeral for my hair, so we decided to throw together a party with about 24 hours' notice. People can come, eat, talk, laugh, and we'll shave my head. We stopped at Michaels (the craft store) and they, amazingly, had Halloween decorations already so we found a little coffin and headstone and Kortni decorated them. Should be fun. Come if you can...there's an event on facebook.

In a way, I'm looking forward to it, and I'm relieved it's finally happening. I felt the same way about the diagnosis and beginning of chemo. All the anticipation of when and what and how will be over, and I can just move on. and this ache in my scalp should go away.

I went to the Look Good Feel Better class yesterday. I didn't learn much in the way of makeup tips I didn't already know (except putting little dots to make it look sort of like you have eyelashes when you don't), but I did learn about how I need to keep my products more sanitary, swap them out more often, wash my makeup brushes, etc, so that was good to know. I also learned how to do a couple of scarf ties that look cute. Although that part was all watching, no doing, so we'll see if I remember. They talked about wig care, so that was good. I would say it's a worthwhile class...especially since I got a whole bunch of makeup and skin care for free!

I will try to get pictures tonight, as well as when I wear wigs and scarves and things so I can share. It'll be fun to dress up my head in different ways!

Sunday, July 26, 2015

Day 12

Today is day 12 of my first chemo cycle, and I still have hair with no loss other than what is typical for me. Every time I wash my hair, I wonder how many more times I'll do so. I now have a little game going in my head: will I be able to finish the shampoo and conditioner in the bottles I'm working on before my hair is gone? My scalp is definitely a little tender and it occasionally tingles. I generally like my hair to be stroked or played with, but now right now.

It's not so much the thought of losing it that gets to me; it's just another marker of what I'm going through. Another reality check. A stone on the path. I'm actually kind of looking forward to the fun of wearing different wigs and scarves, decorating my bald head, etc. I have a few things already, waiting for the time to come to be used. People asked for pics of me modeling the wigs, and I might take some or I might make you wait until I actually wear them. I'll think about it. I know my hair will grow back eventually and I can't help but be a little sad that it will be gone for a while, but that's OK.

I sometimes think about the changes my body will go through. Although there are certainly things I'd like to change about my body (mostly the amount of fat on it), for the most part it's been good to me all these years and I've been pretty happy with how it functions. Some of those things will change, some temporarily and some permanently. My hair will be different when it comes back--better or worse, it's hard to say. Not that I have great hair now, but it's mine and I'm used to it.

Chemo will likely throw me into a menopausal state, which may or may not continue after I'm done. That brings changes as well. I just can't help but be a little sad about it. Change is sad. Sure, I'll be fine. Sure, women go through menopause all the time and have very happy lives and I will, too. But I'm sad that this change is happening now. That one of my breasts and possibly both will be gone. Yes, I'll have them replaced and the new ones will probably look nicer, but they won't feel the same--in fact, they'll be numb. I may not ever return to the great physical strength I used to enjoy. I may lose range of motion in my right arm. I don't know yet all the changes that will happen, and to what extent and for how long. I don't dwell too much on this stuff; I grieve a little and move on.

Having cancer has made the prospect of aging and all that goes with it all the more real. I'm a youthful 42, physically and mentally. I've always been scared at the idea of being old, but I tried not to think about it. Now I think about it more keenly. Soberly. With much trepidation. Some readers will tell me I have a lot of years before I will be old and feeble, and they're right. I probably have at least 30 years or more, and I know plenty of people in their 60s and 70s who are active and healthy and youthful. But suddenly 30 years doesn't seem as long as it used to. I wanted to go see the movie Mr. Holmes, but I think it would be just too sad for me right now. Instead we'll see Trainwreck. There's some great cinema for you.

Despite the morose ramblings above, I am largely in good spirits. I feel good, my appetite is good, and I laugh a lot. I can help out a little around the house (the little Michael will let me, which is not much), go out to a movie (matinees aren't too crowded), etc. and still feel good. I do run out of energy, but then I just feel sleepy, not weak and exhausted.

My mouth feels much better today. I don't know if it's because I had been slacking on my rinses for a couple days before the sores started and then I got better about it and that's helping, or if it's normal for them to show up and go away. In all the literature, it talks about side effects being a possibility and how to deal with them, but it never talks about when they show up or how long they stick around. I guess it's because everyone's different, so I can understand that.

I hate being in the dark. I hate not knowing what to expect or how things will happen. I grill my survivor friends about their chemo experiences. Mine may not be exactly the same, but the more I hear what others went through, the more I feel prepared for what I face. At least it's not so unknown, even if I don't know exactly how my body will react. Just knowing that most people only have the nausea and fatigue for a few days after treatment (maybe a little longer the further in you get) was news to me and a great comfort. That's one thing I hope this blog does for the next person--to help you know what to expect.

Some of my friends are chipping in to pay for our house to be cleaned every few weeks while I'm in chemo. What a wonderful, thoughtful gift! I have decided to stop thanking people by name in public. Partly because I will forget someone and I don't want to hurt anyone's feelings or make them feel unappreciated, partly because I think some people might feel weird about it. So, you know who you are, and know that I love you and appreciate you! I love the cards, texts, comments, private messages...knowing that you are thinking of me makes me smile, and the distraction of a conversation that is not about cancer is always welcome.

Next treatment is Wednesday, just three days away. I'm armed with a huge pile of ginger and peppermint in various forms, so I'm ready to go. I already see changes in the affected breast--less fluid (although it's still definitely swollen), almost no pain except a little tenderness and the occasional twinge. There was a huge bruised-looking area on the bottom that was swollen and puckered (hard to describe and no I didn't take a picture), and that is now very small. I can sleep on my right side much more comfortably now. I'm looking forward to seeing how the next cycle affects it.

Friday, July 24, 2015

Don't wait

Update on how I'm doing at the bottom if you don't want to read all my philosophical blather.

One of the fun things about having cancer is that I get to be all philosophical and stuff because I have this new perspective on life...and you, my loyal readers, can learn from that (hopefully while skipping the whole horrible illness thing).

I have had lunch with three different friends this week. One I rarely see, although we interact on facebook. I wish it hadn't taken me getting sick for us to make time to see each other. Of course, it helps that I'm not working much now so I have more free time when I'm feeling well enough to see people. But these things are so'll much more regret not seeing someone than you will taking a couple hours every once in a while to catch up. So, my charge to you today (since you all went and got your mammograms and whatnot) is to hit up a friend you haven't seen in a while and get together. You'll be glad you did....either because it was so good, or because it was so bad you can now write them out of your life and move on! Ha!

On the same vein, I wrote the following and posted it on facebook a few months before my marathon and I thought this seemed an appropriate time to repost it. Enjoy. Then I'll let you know how I'm doing.

A couple of times in the past few years, someone has said something that had a huge impact on me, although these things tend to slip. When it was said again a couple weeks ago, it was a great reminder. They all happened to be women who now suffer from chronic health issues that limit what they are able to do physically. The point they all made was...enjoy what you can do now, because you never know what will happen in the future. Another statement I've heard that's equally profound is "you'll regret the things you didn't do more than the things you did."
I think that's an amazingly relevant statement for all of us. Don't put off that new thing you want to try because you think you're too old already/don't have time/it's too hard/you'll look stupid. If you want to try it, try it. Go ahead and look stupid and laugh at yourself. Learn to dance. Or water ski. Or visit a nudist resort. Whatever. Because a year from now, or five, or ten, you might not be able to. And when you look back on this time, right now, when you're healthy (or or at least more so than you might be then), will you smile thinking about the experiences you had, or will you revel in the fact that you never did these things you wanted to do, but at least you never looked silly?
If a 42yo clinically obese woman can run 18 miles and will run a marathon (26.2 miles) in about five weeks from'd be amazed what you can do. But you have to stop making excuses and just start.
So, let's have it...what amazing thing are you going to do?
PS...while on the marathon, we saw a spectator holding a sign that said something like, "someday you won't be able to do this. Today is your day." I am so glad I did it when I could. Oh yes, I'm planning to again, but not this year. 
How am I doing?

This damned disease is an emotional roller coaster. I posted a couple days ago talking about how great I felt. Wednesday night I didn't get enough sleep, and yesterday was kind of hard. We went to a movie (Ant Man--super fun) and I enjoyed it, but I was pretty tired and wrung out all day.

Also, the mouth sores started forming. They're not open, at least not yet, but there are tender spots in my mouth and it was pretty uncomfortable. It was uncomfortable enough to swallow that I decided I couldn't eat the ribs Michael made for dinner and had all soft stuff instead. It made me feel pathetic, like an invalid. Which, of course, made me cry. I did my mouth rinse a couple times, and today I felt a little better and was able to eat, although the tenderness is definitely still there. Energy level and everything is much better today.

Went to the ACS office today and got a cute brunette wig. I tried a couple long blonde ones...they were pretty, but made me look like a stripper. I should have taken pictures!

Next treatment is next Wednesday, so I probably won't be doing any visiting for a few days after that.

Wednesday, July 22, 2015

Feeling good!

A happier, better-feeling me, faded hair,
and fading bruises
For the second day in a row, I feel good. Almost normal. What a nice feeling! Yesterday I even went for a walk around the block with Michael, then played games (Star Realms) after dinner. By the time we were done at around 10:30, I was tired and ready for bed, but not wrecked or in pain. That was an awesome feeling. Today I had lunch with a friend and ate a HUGE sandwich and some potato salad--big improvement from barely getting down a small helping of food a couple days ago. It feels soooo good to be more like myself again.

I just have to make sure I don't overdo it, which is my tendency whenever I'm sick..."I feel 10% better, so I must be over it! Back to normal activities!" No. Luckily Michael is smarter than I am and reminds me to not push too hard. You can only mind over matter so much, and then you have to listen to your body. grumble grumble grumble...

Still no hair loss. The blue fades with every washing, so in a way it's like I have a new's more blue-green now. I still get a lot of compliments on my "mermaid hair."

The port and incision to get it there don't bother me at all unless I accidentally touch them. I can even sleep on my right side again. Hurray!

I have an appointment with the genetic counselor on the 5th so they can test for the BRCA gene. Mostly that will affect whether I get a double instead of a single mastectomy.

I think that's it for today. Happy I get a reprieve from feeling awful. Grateful for the good things. Trying to catch up on work and get more of it off my plate. One step at a time!

Tuesday, July 21, 2015

Oh, look. A glimpse of me!

My One Treatment Done present--a European
charm bracelet, the heart charm, and some
spacers. I'll add a charm after each treatment.
Today is day 7 of the first chemo cycle, and it's the first day that I actually feel pretty good. Yesterday wasn't bad, but I had a headache all day that wouldn't go away. Sunday, I thought I was good. I got cheeky and put away a laundry basket full of clothes. It took me probably 2-3 hours because I'd take a break every couple minutes, sat down while I folded, etc. Then I had a friend over for an hour or so, and the whole time I was sitting in bed, just talking. However, shortly after she left I crashed and was ruined for the rest of the day (so good to visit and talk and laugh, though).

Today, though, I'm doing well. I went downstairs and got my own breakfast and coffee and everything. I feel almost like myself again. I've been on the computer for a couple hours and still have focusing power. We're going to try to go for a short walk later...I'm supposed to be getting exercise, but it's literally not been possible.

I still have all my hair, although I expect to start seeing it rain any time now. Last night, everyone went out to dinner and I stayed home to nurse my headache. I lay in the dark, hoping that would help (it did, a little), and just started running my fingers through my hair and couldn't seem to stop. Thinking about how I won't be able to do that much longer. Oh, I'll grow back. But it will be many months before it's long again. I've made peace with it and will find ways to have fun with being bald, wearing scarves, hats, wigs, etc. But it is sad to know that MY hair will be gone for a while. Plus, losing it will be another reminder that this really is all happening. It's real. And I'm getting ever closer to the hard part.

People tell me not to be hard on myself or beat myself up when I have a breakdown, can't physically do what I want to do, etc. While that's a nice thing to say, I thought I'd clarify: just because I'm expressing frustration doesn't mean I'm beating myself up. It means I'm frustrated. Just because I'm telling myself to snap out of my funk doesn't mean I'm being hard on myself. It means I need to not wallow in self pity.

People to say to own your feelings and allow yourself those crying jags, etc. Frustration is an emotion, just like sadness. I'm allowed to feel frustrated. Telling me not to won't change it. I am normally a strong, high energy person, and I get forcefully reminded every day by my own body that I can't do even a fraction of what I normally would. It's a huge life change. Being frustrated about it doesn't mean I'm somehow blaming myself...I didn't give myself cancer. It's something that happened to me. I'm just processing my emotions about it all. Facing an illness is one thing, but having my whole life turned upside down and inside out for months? That sucks.

And yeah, I have my break downs. I the shower, in bed, on Michael's shoulder. Sometimes the littlest things set me off. I cry it out, or I vent here on my blog or to a friend. But then I need to get past it. I can't sit around complaining forever or it will just make me miserable. I think I have the generally positive attitude I have because I'll have those moments, own them, then say "enough" and get back to living my life. I think I have a pretty good balance.

Anyway, that's the update for today. Working on getting an appointment at the local American Cancer Society for a wig fitting (plus a couple friends are giving me some--might as well have some fun, right?). Makeup/scarf class next Monday. Have a good day, all!

Saturday, July 18, 2015

A day in the life of a cancer patient (plus an update on how I feel)

There are a couple of reasons I keep this blog. For one, it's a handy way to keep everyone apprised of my progress. For another, it's cathartic. But another big one is for educational purposes. I hope that readers not only learn from my journey so they take better care of themselves, but also have better understanding of what someone goes through when they have cancer. What I want you to get out of this is not so much "Poor you, Jennifer!" as "Oh, now I understand why you're not getting much work done/hanging out with me/etc."

I mentioned before that having cancer is a full time job. I thought I'd talk today about what that really means. You've already read the litany of doctor's appointments and tests I've been to in the past couple weeks, but that's only part of it. There's a lot of self care I need to do:
  • Because the chemo reduces my white blood cell count, I am highly susceptible to infection. Infection when you're in chemo does not mean inconvenience; it means a likely hospital stay and possibly death. Even a cold could cause me serious problems.

    So not only do I need to make sure I wash my hands with soap before I eat and after using the bathroom, but after I touch the cats or anything that anyone else has touched, etc. This, on top of the fact that chemo also tends to dry out the skin, means I need to apply lotion all over every day to keep from getting too dry. This includes the inside of my nostrils. If any skin anywhere cracks, that's another opportunity for infection (besides being uncomfortable).

  • I need to eat 80-100 grams of protein per day to help my body maintain strength while pumping it full of toxic chemicals (chemo doesn't just target the cancer; it also targets me). That is a lot of protein, especially if your appetite is compromised. Of course, I also need lots of veggies, whole grains, and anti-oxident foods like green tea, almonds, etc. I eat at least 6 small meals per day to try to get it all in. I also take a multi vitamin, turmeric, and calcium with D3.
  • I need to drink 3+ quarts of fluid per day. That is a lot of fluid. Thankfully, it can be in just about any form but alcohol: water, tea, juice, coffee (one cup per day, yay! as long as my stomach is up for it which it hasn't been.), soup, even juicy fruits like melon. So not only am I constantly shoving food and fluid in my mouth, I'm using the bathroom about every hour when I'm awake and 2-3 times during the night. 
  • Chemo often causes a bad taste in the mouth that makes food unappetizing as well as sores in the mouth that make eating painful (thankfully, I'm not there yet). So, to combat this, I need to rinse my mouth three times per day with a solution of baking soda, salt, and water. 
  • Chemo is hard on the teeth. This means being fanatical about taking care of them: brushing three times per day and flossing daily.
  • I keep a symptoms journal, logging how I feel, when I take meds, whether they helped, etc. Also, I take my temperature three times per day or whenever I feel particularly bad and write it down. If my temp spikes, I need to call the doctor. If it hits 100.4 (not that high for most people), I go to the ER. Remember that point about infection being deadly? We are not messing around. 

That's just my job (in addition to resting). Then there are my caregivers and housemates:

  • In order to prevent infection, all surfaces anyone touches need to be wiped down several times per day with sanitizing wipes.
  • We are installing hand sanitizer dispensers inside the front door and outside the door to our bedroom. Everyone santitizes when they come in the house and before entering the room.
  • No one enters this house with a cold or any other illness. That includes all of Michael's kids' friends, anyone who wants to visit me, the respite care workers for Michael's mom, etc. 
  • If anyone who lives here gets sick, I am sequestered in my bedroom until they're better and they cannot come in here.
  • When preparing food for me, hands and surfaces are washed religiously, all food is washed, proteins must be cooked thoroughly, we have to be extra diligent about cross-contamination, and I can't have anything spicy. Most of that is good practice anyway, but most people slip. We can't. 
With all that out of the way, here's my update on how I'm doing:

It's day four of the first chemo cycle. I have not taken any anti-nausea meds for over 24 hours and I've slowed way down on pain meds. I don't feel fantastic, but not bad...and not bad is pretty good at this point. I think I'm past the worst of it for this cycle and hopefully I'll feel a little better over the next few days. Sorry for the TMI, but I started my period last night, which is not helping how I feel overall. Completely unfair....chemo is supposed to stop them, isn't it? Maybe I was too far into my cycle when I started and this will be the last one. Like I need this on top of everything else.

I had a little breakdown when I started to worry the chemo wouldn't work. I don't see much change yet, but I don't know how much I'm supposed to expect or how soon, or how long the chemo does its work after the day you're treated. Something I need to read up on. What if it doesn't work? Or what if it's working more slowly than the tumor is growing, and the tumor does something horrible before the next treatment? Really need to do more reading on the science of it and how it works and maybe that will make me feel better. On the bright side, there is some bruising that's been present on the bottom of the affected breast for quite a while. It receded when they drained out the fluid the day they did the biopsy but came back when all the fluid came back. It seems to be receding again. Also, maybe the breast is a little less rounded and swollen. So maybe I should calm the hell down and be patient. There's a reason I'm getting 8 treatments, right?

Every time I see a blue hair lying somewhere, I think, "Is this it? Is the hair loss starting?" They say 7-10 days after the first treatment, so I'm probably being ridiculous. Plus, my hair grows really slowly and it's the fast-growing cells the chemo hits first. Plus, I shed like crazy all the time anyway. My scalp does tingle, like people say...but is it psychosomatic? My friend Sandy is standing by to shave my head with her clippers once the hair loss starts so I don't have to deal with the emotional, drawn-out process and clumps falling out.

I think that's enough for today. TL;DR: I'm doing OK for someone who has cancer.

Thanks for hanging in there with me!

Thursday, July 16, 2015

Day 2, plus more details about yesterday

So the important thing is that I'm much less nauseous today. I don't have a huge appetite, but I am eating, and I'm still on the anti-nausea meds just in case but spreading them out. I have felt a little out of sorts, but not terrible. Spending a lot of time in bed. Went back to the infusion center to get the neulasta, which will boost my white blood cell count. The shot was no big deal, but some time in the next 24-48 hours I may have horrible, gut-wrenching bone pain. Or it might not affect me at all. Time will tell.

Generally, I'm in good spirits and my fatigue/energy level is not bad. Things are going well at home; we're setting some routines for meals and things, setting up some help with housework, the kids (college age) are helping out more with cooking and what not (with instructions on keeping the food safe for me to eat), which is great. There are a lot of things to do every day, and the routines are helping. I started a journal for symptoms, when I take drugs, my temperature, etc.

I got some not-so-great, but not horrible news from the surgeon yesterday when she called with the MRI results. I guess it shows more than the PET scan...there are four lymph nodes involved, not one, and the tumor has reached into the pectoral muscle and is pulling on it a bit. This is really just informational because it won't change my treatment plan. However, it does mean that I will almost certainly lose the right breast. I'd pretty well made peace with that anyway, but there was some hope the chemo would shrink the tumor enough to just do a lumpectomy. That possibility is really pretty small now. That's OK, I'll get a tummy tuck out of the deal.

Some of you were interested in which drugs I'm on:

My chemo regimen is four cycles of Adriamycin and Cytoxan, then four cycles of Taxol.

If I recall correctly and am reading the binder correctly, the pre-meds I get (IV injections before I get the chemo drugs) are Dexamethasone for anti-inflammatory, prevent allergic reactions, prevent nausea and stimulate appetite. Lorazepam for relaxation and anti-nausea. Diphenhydramine for allergic reactions.

Then, at home I have Zofran and Compazine for nausea.

So, we'll see how I feel over the next couple days with the neurolast. Then hopefully I'll feel pretty good for a week until the next cycle starts. Maybe I can get in a visit or two with friends.

Wednesday, July 15, 2015

Chemo cycle 1, day 1

Me on day two with the port,
looking and feeling miserable
So today treatment finally began. Up until now it's been diagnostics and planning and weeping and cheering and otherwise preparing, but this morning is when my road to recovery really began.

We packed up everything we could last night so we'd be all ready, then set the alarm for 6:30am to put the numbing cream on and have a little breakfast before going to the infusion center. We got there and got checked in, then the nurse started setting everything up. We were praised roundly for following directions--hydrating well yesterday and properly putting on the numbing cream this morning and wearing a top that would allow them to access the port. I would not think these things would be hard to do, but I'll take praise where I can get it! BTW, although I was pretty miserable last night, the port is much more comfortable today. Putting it to use was not a cake walk, but not as bad as it would have been if we tried to start yesterday. Youch!

The chemo chain Michael made for me
Once everything was all set up, the nurse got all the IVs going--starting with some strong anti-nausea meds that were supposed to get me through tomorrow, as well as something for anxiety. Three pre-meds, then two chemo drugs, one at a time. I think there was more to it than that but I'd have to go look at my notes and I'm too lazy to get up. Then my medical oncologist's nurse sat down with us for about an hour and talked about self care, avoiding infection, what to eat and what not to, dealing with the side effects, etc. She gave us a binder with all kinds of info in it. I need a bookcase just for cancer materials!

First chemo cycle!
By the time she was done and left us, we had about an hour to go. I was sleepy from the ativan, so I drifted off. It was over before I knew it, and I felt OK walking out. I got a little pillow and a hat on the way out from a basket on the counter, made and donated by the Ladies of the Eastern Star. Sweet. We got lunch to go from Panera and brought it home. I ate my soup and baguette and decided not to push my luck and save the half sandwich until later. I ate it a couple hours later and barely got it down. I was already feeling queasy.

One down, 7 to go, baby!
As you can see, the blue is fading.
I didn't feel like losing my lunch, but my tummy was definitely upset. Michael made me some mint/ginger tea and sipping that helped. I was able to eat my dinner. Oddly, even though I didn't want to eat, as long as I was chewing and swallowing I felt OK. It was when I was done that I felt nauseous again. I wasn't supposed to have to take my anti-nausea pills until tomorrow, but the doc said to take them if I need to, so I did. I also sucked on a peppermint candy, which helped. So, right now I'm feeling delicate but not too bad. Sweet Michael is on his way back from Trader Joe's with some ginger chews that are supposed to be very helpful.

Tomorrow I have to go back and get a shot to keep my white blood cell count up. Then I have a reprieve until the 29th.

I've said it before, but I'll say it again. Michael is a godsend. He is taking the very best care of me, making sure I follow instructions to the letter, getting me whatever I need, letting me cry when I need to. I am so thankful!

Tuesday, July 14, 2015

The assimilation has begun: I'm officially a cyborg

So yesterday I had a port inserted in my jugular vein--it's a little plasticy thing that they will use to pump the toxic chemicals into me that will kill the cancer cells. It helps protect my veins, and it will also take place of regular IVs for all the various blood draws and tests. I still get stuck with needles, but I have numbing cream and my one good vein won't get trashed.

The night before, I made a will. The first time I've ever done that. It was a little sobering, but necessary. Better to have it and not need it than need it and not have it, right? So since I made it, I won't need it!

We got there at 6:30am to check in, and then they took me back to put me in a gown, get my vitals, and start my IV of tylenol and anti-nausea drugs. Then Michael got to come sit with me for about 45 minutes before it was my turn in the OR. Mary the breast cancer nurse navigator came by and gave me a couple hats for when my hair falls out. She's a sweetheart and obviously loves her job. My surgeon, Dr. Eaker, came by to say hello and go over a couple things. I also met the anesthesiologist and the other nurse who would be in attendance. All of them, including the nurse who was prepping me, asked me to state in my own words what I was getting done that day.

Finally it was go time. Michael gave me a good luck kiss and went to wait in the waiting room, and I was wheeled down the hall into the OR. They had me shift over to the operating table and finished their prep, which included reading out loud what we were doing one more time (they are really careful about not performing the wrong surgery!) and getting my agreement. That is the last thing I remember. I was dreaming (I don't remember what and it wasn't very clear), and then I heard someone telling me I was all done. Really weird. I don't remember counting backward or falling asleep or anything.

It took me a few minutes to wake up fully, and my darling Michael was there getting instructions from the nurses. I don't remember anything they said, but thankfully he does. He said the doctor said it all went perfectly, so that's a relief. I'm not allowed to lift anything heavy or reach for anything with my right arm. Complying with this will not be a problem because every time I move my right arm, it hurts.

I slept for most of yesterday and much of this morning. When I'm awake, I'm in pain. The whole area they worked on is sore and bruised. Every time I change position, it hurts, although then everything settles down and I'm OK as long as I sit still. The pain meds do help but don't take it all away. I had to cancel lunch with two old friends today and the makeup class tonight--there's just no way. I'll have to reschedule for later this month...maybe next week. I'm sure this will start feeling better in a couple days. It doesn't look infected or anything.

Tomorrow morning, chemo. I have to drink almost a quart of fluid today to prepare and get up ridiculously early to get the numbing stuff on before my also ridiculously early appointment. And then it's go time. I hear the first round or two isn't too bad, so I probably have a couple weeks before I start hating life.

On a side note, having cancer and needing all these tests has afforded me the opportunity to get a check on my general health. My heart and lungs are in fantastic shape and all my labs have come back within normal ranges. A couple nurses thought it remarkable I've had no other surgeries (other than wisdom teeth extraction) to date. So, other than the cancer I'm actually quite healthy. Good to know!

Sunday, July 12, 2015

I haz feelz

The time is fast approaching. Chemo. Three more sleeps. Two full days and a few hours. Although my life has already been limited since my energy took a nose dive a few weeks ago, my life will officially grind to a near halt starting on Wednesday morning. I feel like I need to rush around and get in all the fun I can before then, but there's just no time and I can only handle so much. And what more can I do? I think I've eaten all the foods I won't be allowed for a while. I've been to the movies. I'm too tired to do much else.

I've heard it said that having cancer is a full time job, and it's so true. With all the research, phone calls, reviewing notes, talking to my supportive friends, writing this blog and responding to the comments, and going to appointments, I'm constantly doing something that has to do with cancer. I feel like it's all I do or think about. But I still have my writing work, and while I'm trying to hand some of that off, it requires work so my replacements are well set up for the job. Then, in the midst of it all, I had to move. And I have to manage it all while I don't feel well and require several rest breaks/naps throughout the day. It's a little overwhelming. I feel like a broken record, but without Michael I don't know how I'd manage. Having all of you lifting my spirits every day is definitely a help as well!

So today I went to see my friend Andee star in Next to Normal, a rock musical about a woman struggling with bi-polar disorder and the effect it has on her family. It was incredibly well done and affected me profoundly. While it was about mental illness, there were a few messages that hit home with my situation. One is that while life might be a little shitty right now, I can get next to normal and be as happy as I can with what I've got. Another is that there is a light, a beacon of hope at the end of this tunnel I'm in. I keep saying it's only a few months, in a year this will all be behind me, but I need reminders of that.

And another thing I got from the show was some much-needed perspective: While what I'm going through isn't a cake walk, it could be worse. My disease can be cured. Women beat it and go on to have normal lives every day. The doctors know what's wrong and how to fix it. I've watched friends struggle with chronic illness--either something incurable or going through years of tests to try to figure out what it is--and I do not have that. I have a visible illness people understand and don't brush off as a case of the blues or being a hypochondriac. I have a cancer that has received a lot of funding for research. If I'm going to get horribly sick, this is the one to get.

On the way home, Michael asked what time I need to stop eating and drinking tonight in preparation for my surgery tomorrow. That made it hit home that PORT SURGERY IS TOMORROW. Every step closer to treatment beginning makes it that much more real. I keep thinking it feels pretty real, and then I get one more step closer. There's always a little rush of panic that goes with the realization, then eventually acceptance. Tomorrow night at this time, I'll have a big plastic thing in my neck that will live there until probably November. My friend Kim wanted me to bling it, but it will be under the skin. We considered Bedazzling the area around it...think the doctors will allow it?

So I had my little bout of feeling sorry for myself but I think I'm OK now. Writing this blog is definitely cathartic!

I'll report tomorrow after my procedure when I'm coherent to let you know how it went.

Saturday, July 11, 2015

Need input: chemo rewards program

So, I was thinking about how four months seems like a long time to endure chemo. But then I realized, that's 16 weeks and I get treatments every two weeks, which is only eight treatments. Eight isn't so many, right? then I thought, what if I do something, like get some kind of treat for Michael and me to enjoy together, to commemorate each one and count down to the last? And we talked about when we were kids and made those paper chains to count down to Christmas.

So here's what we're going to do: we'll make a paper chain and write a treat on each one, randomize them, and tear one off after each treatment. We do whatever it is during that two weeks, whenever I feel up to it. Fun, huh?

So here's where I need your input: what suggestions do you have? It could be going somewhere, eating something special, buying something...use your imagination and let's have some fun with this. We have to come up with this fast because chemo starts first thing Wednesday morning. Make your suggestion in the comments (or on facebook because I know some of you have issues getting your comments to go through...sorry) and I'll add them to this post. Then we'll either pick the eight we like the best or maybe random ones if I like too many.

Remember, I might be nauseous the first week after treatment and will be highly susceptible to infection the second week so I'll need to avoid crowded places, touching strangers, etc. No sushi, rare steak, alcohol, or tobacco (thereby cutting out many of my great joys in life). I'll start with one I think will work (please note: if I missed yours, it's because I'm getting deluge of suggestions and I missed it. Feel free to just send me a message or post it again. Or it was naughty and I didn't want my mom to see it!):

Yes, I will clear questionable items with my doctor.

Also, there are a lot of great ideas for general coping, nice ways to spend time together, etc. I may capture those in another post, but they're more every day type things than what I'm looking for here. This is for things that are more celebratory. Things you save for a special occasion.

  • Get ice cream at my favorite ice cream parlor (Leatherby's) (yes, I've heard the whole thing about how you should avoid sugar. I will be cutting way back on it so a treat once in a while is fine)
  • We each give/get foot massages (could make it a whole romantic evening with candles and stuff...)
  • Buy some kind of accessory that is special and will be a reminder
  • Hire someone to do a thorough house cleaning
  • Go to a spa for a couples massage
  • Go out for a movie date and eat ridiculous amount of popcorn. Maybe the drive-in.
  • Rent or borrow a pickup truck, fill the bed with blankets, pillows, an air mattress, whatever...and have him drive you someplace out of the way to go stargazing. Bonus points are snacks, hot chocolate in a mug, etc.
  • You love to dance, you each pick a song and dance, like no one is watching! (could be part of the whole romantic evening thing)
  • Buy comfort things- like the plush blanket, robe, or slippers you normally wouldn't splurge on.
  • A couples bubble bath with some brown sugar vanilla bubbles and soft lighting with only candles and some Nora Jones playing in the background
  • Start a charm or Pandora bracelet. Every treatment you can add one. Then when this curse is beaten you can add the most beautiful charm of all.
  • A weekend away in nature - where you can both be active and relax depending on your energy level 
  • a day at a Spa with Sauna & massage 
  • a playful photo shoot because chemo might temporarily transform but you can still be sexy 
  • nice smelling nourishing creams for your skin 
  • a day trip to a secluded beach (With all the appropriate sunblock gear and a fancy umbrella and chair)
  • Buy a new game and have friends over to play it

OK, go!

Friday, July 10, 2015

Things are moving right along

The busy week continues. I went in first thing this morning for the heart scan, which I believe is to make sure my heart stands up to the toxic chemicals they'll start pumping through me next week. It involved an IV....the fourth this week, third day in a row, all in the same vein since I really only have one good one for that. It's getting a bit sore!

Then we went to the apartment to rest a bit and the surgeon's office called to schedule surgery to insert the port. That will be first thing Monday morning, and oh...we need you to do labs TODAY in preparation. Good thing we hadn't driven the 15 or 20 miles or whatever back to the house! So back to Sutter we went for yet another blood draw and pee in a cup. That makes five needle sticks this week, which made me a little cranky. Luckily, since it was just a draw they were able to use a vein in my other arm. And she was mercifully fast. I told her I loved her. She said I was the second person today to tell her that. I feel like a human pincushion. And it's only just begun...

The infusion center called to set up my first chemo appointment, but then when I called them back they said I need to talk to the oncologist's nurse first, who will go over everything: which drugs I'll get, how it all works, etc. I'm still waiting for her call so I sent a message following up. The genetic counselor office called to set up the BRCA testing, but I haven't called her back yet.

I'll make a side note here...Sutter Health is a pretty amazing organization. We've visited four of their buildings so far, and they have a ton more. Huge buildings. Amazing technology. The machines I've seen just this week are quite impressive. The advances in medicine in the past few years are just staggering! Also, I've been super happy with the staff, for the most part. Efficient, sympathetic, giving me all the information I can stand. Other than the whole cancer thing, it's been been a great experience.

Update: chemo starts Wednesday at 8am.

Thursday, July 9, 2015

Good news from medical oncologist!

So I had my PET scan yesterday and my chest MRI this morning. I was anxious to hear the results, fearing the cancer has spread to other organs since I've had it for a while but didn't know it. The big news today was that the cancer has not spread beyond the breast and axillary lymph node in my armpit (which we already knew about from the mammogram and biopsy)!

Hugh relief. Although it was funny because I was happy to hear that news, but in the moment I took it very matter-of-factly. It wasn't until about 10 minutes later, walking back to the car, that I had the big emotional reaction. Thank God! Not that it would have necessarily been a death sentence if it had spread further, but it would certainly mean more treatment.

So, 16 weeks of chemo with treatments every other week. The nurse will call tomorrow to set that up, hopefully for next week since the tumor is quite large (estimated at about 7.5-8cm) and aggressive. The surgeon's office will call and set up an appointment to install the port, and I have to get some other scan done on my heart to make sure it will hold up to chemo but there's no reason to think it won't. However, we can get going before those things happen, if necessary.

The chemo should shrink the tumor, plus kill off any stray cancer cells that may be floating around. I also need to meet with a genetic counselor to see if I have the BRCA gene, which along with the size of the tumor come surgery time will influence my decision whether to do a lumpectomy or single or double mastectomy. Radiation will come some time after surgery and before reconstruction.

So that's the news. I don't have much else to report...I'm still tired, it still hurts, but I'm in good spirits. I feel more confident than ever that this will be a bump in the road, not an end.

Continued gratitude for the love and support! It helps me more than you know. I want to do a post listing all the helpful suggestions I've gotten about surviving chemo, and maybe share some of the wonderful survival stories I've heard as well (if you sent me yours privately, I'll keep it anonymous as some people don't want theirs shared with their name. If it's ok to add your name, let me know). And, of course, I'll keep up the updates on my progress.

Celebration dinner tonight!

Tuesday, July 7, 2015

Busy week!

It's finally starting to feel like things are really happening. This week will be filled with doctor visits and tests. Yesterday I had a general physical so they could listen to my lungs, tell me I'm fat, draw blood, etc. Tomorrow I'll have my PET scan, Thursday morning the chest MRI, and then I'll meet with the medical oncologist to go over the results of all the tests and set up the treatment plan. At some point I'll go in and get a port installed in my neck for the chemo, but they haven't set that up yet. I imagine chemo will start next week.

I don't have much else to report. People ask me how I'm doing, and the answer is always the same. "I'm OK. Tired." My energy level sucks. There's some pain but it's managed. My spirits are pretty good. I'm just tired of waiting for it all to begin and for it to begin already. Once it's begun, I suspect I'll feel differently, haha! Enjoying my silly blue hair. I have plans to attend a class where they give you makeup tips and give you free product, teach you how to wear scarves, etc. That should be fun. I'm not much of a makeup person (except when I perform, and then it's OTT), but I might wear some on days I need to feel pretty.

I'm anxious to hear the results of the PET scan and MRI. That will tell me how big the tumor is and how far the cancer has spread. At some point, I'll also go to a genetic counselor to see if I carry the BRCA (I think that's it) gene. If I do, that increases the chance of recurrence and will affect my decisions come surgery time.

So, still more waiting. But at least we're almost in motion.

Thursday, July 2, 2015

The beginnings of a plan

I should have written this hours ago when it was all fresh in my mind, but we had lunch after my doctor appointment, then picked up things from my apartment, and by the time we got home I just conked out...exhausted.

It was a good day. I was a little confused and didn't realize I'll have more than one doctor. Today I met with the surgeon who will perform the lumpectomy or mastectomy, whichever is decided when we get there. She was fantastic--she has a philosophy of educating her patients to help them make the best decisions for them. She gave me a ton of information, which I couldn't begin to detail here, but it made me feel comfortable with what is going to happen and the decisions I need to make.

Before I go on, a caveat: Because of the program I'm on, I basically have two surgeons in the city I can see. The other one didn't call me, so while I could follow up with them for a second opinion, I decided that I'm comfortable with this one and the team's approach (they're at Sutter Health) to stick with it. I am also making my treatment decisions based on our discussions and my particular cancer and body, so please respect my decision and do not offer your opinion or beg me to change it.

It was the surgeon's suggestion to do chemo before surgery, because it buys us time to be able to really weigh the options as far as the surgery and reconstruction go. It also has a chance to shrink the tumor, and it may be small enough to do a lumpectomy instead of a mastectomy. But then, depending on other tests and factors, I could still end up having the mastectomy anyway. Anyway, about 8 weeks after surgery I'll have radiation therapy.

If we do a mastectomy, we will probably put in tissue extenders (I think that's the term!) to start reconstruction, then opt for the tummy tuck option where they use belly fat to reconstruct the breast(s) next year after I'm all done and cured of cancer. But that doesn't have to be decided right this minute and I have time to find the right plastic surgeon and everything.

I already deduced this from the initial pathology report and internet research, but the type of tumor I have is aggressive and fast growing, but highly responsive to chemotherapy. It is negative for all the hormone receptors, ruling out some drugs I can take, but that's OK because the chemo will get it. If I understand correctly, it's actually favorable that one of those is negative--HER-2.

The rate of survival is the same whichever you do first, and there aren't really any down sides to doing chemo first, and the up sides are pretty good. So, that's what we decided. She also ordered an EKG to make sure my heart is healthy enough for the anesthesia, a chest MRI, and a PET scan to see if there is cancer anywhere else. She'll also be installing a chemo port in my neck.

A Nurse Navigator sat down with me and gave me lots of information, a binder full of stuff to study, and answered more of my questions. She'll be available if I have more.

I'll meet with the medical oncologist next Thursday so he can decide how much chemo (surgeon said 4 months is pretty typical) and which drugs, etc. I should have all the other tests done by then so we'll have a pretty good picture of what's going on. They will call me if they can get me in earlier with a cancellation, but he is meeting me on an afternoon when he doesn't usually see patients so they are getting me in as soon as they can. I imagine chemo will start the following week. And that's when the hell begins.

The fatigue I'm experiencing is definitely from the cancer and will actually get worse as treatment progresses because of the side effects, although I should start seeing improvement in the pain/swelling/fluid production in my breast from the first treatment. Because it will attack my white blood cell count and lower my immunity, I have to be super careful to not expose myself to colds, flus, or any other disease/infection. I will have to be very careful about where I spend time in order to avoid complications. I will not be dancing or teaching until chemo is over, which bites. I will have to be selective about other activities as well.

So I got a lot of questions answered, and the manner of the surgeon and nurse navigator put me very much at ease. I feel more confident about my prognosis. I feel good that we are putting a plan in action, even though there are still details to work out. I had hope before, but I have more now. I know the next few months will suck, but I'm ready.

Wednesday, July 1, 2015

...and the darker side

I feel it's only right to post the harsh realities as well as the "rah rah rah I can do this" stuff. I don't want to give the impression that this experience is all sunshine and roses, because it's not. That I never feel down, because I do. For the most part I'm keeping a positive attitude, but there are times when the dark thoughts creep in. I am human, after all, and it's natural with what the next few months will hold for me. 

There's usually a trigger, something that reminds me of the seriousness of my situation. Last night, I needed to teach a dance lesson. I have handed off some of my students, but was trying to continue teaching as long as possible--both for the income and to not overly tax the other teachers at the studio or force the studio to lose revenue or make students unhappy by having to switch teachers mid-package (most of them are getting ready for their wedding). But yesterday when I took my shower before going to work, just putting my hands up to wash my hair was painful--largely because of the lymph node in my armpit. I don't know if it's still angry from the biopsy (a week and a half ago) or if it's the cancer. My breast hurts, too. Often just a tender soreness, but sometimes there are shooting pains the Codeine takes the edge off of, but doesn't mask. 

Anyway, the shower alone was exhausting and painful. I thought about the 20-minute drive to work, teaching, then driving home..and decided to have Michael drive me. It was the right choice; I was even more wiped out after my lesson. Clammy sweat, woozy feeling. I was very glad to not have to drive home. At that point, I handed over the remainder of the students who hadn't started their lessons yet (I must have handed off 6 or 7 of them...cha ching). I still have a few lessons to finish up, students who have just a lesson or two left in their package. Hopefully I'll be able to hang in there for them. However, I promise to keep thinking of my health first and give them up if I have to. 

This morning I remembered I had a general physical scheduled. I haven't had one in god knows how long, and since I'm now covered under medi-cal, they suggested I go ahead and get one. I thought it would be no problem to drive myself there (about 25 min drive), do the appointment, then go to my apartment just a couple miles away to wait for Michael to get off work and have date night. 

Again, I thought wrong. I went downstairs to get coffee and microwave something for breakfast. I got back upstairs and was already wiped out. I realized driving downtown was not a good idea. I rescheduled the appointment, and Michael and I decided that I should not plan on driving anywhere until I feel better. 

Who knows when that will be? After surgery? After chemo? Will it be months? How long will I have to be dependent on others for something as simple as driving a few miles? Michael urges me to not be too hard on myself, to allow myself to just rest and heal. That it's natural I would feel tired with what my body is going through. I know he's right, on an intellectual level. But it's hard to accept it. I'm the one people lean on, not the one who leans on others. I'm the one who's strong and independent. I'm the one who takes care of herself. Who covers for other teachers at the studio. It's hard to let that go. It's hard to feel this helpless and dependent. I know, I know. It's temporary. But I don't have to like it.

I had some other dark thoughts last night, too. What if I DON'T beat it? What if something happens during surgery? What if, what if, what if? I told Michael we need to do a Power of Attorney, just in case. A sobering but realistic thought. Best to plan for the worst, and then it won't happen, right?

OK, I'm done. Pity party over. I will be fine, and I will get through this. Things will be bad, but I am strong and I can handle it. I'm surrounded by love and people who will help me.

Tomorrow I see the doc and will have a better idea of what the next step is. 

One step at a time.