Short but sweet!

37 when diagnosed and started chemo, 38 when completed chemo, told my chemopause could be permanent, would probably take at least 6 months to know –

My period came back today. ūüôā Weird thing to write about, I guess, but since we really felt robbed of making our own decision whether or not we wanted to try for another baby, this was a super important thing to both Julian and me. Additionally, it makes me feel really positive – my body is becoming mine again, and if I could recover so quickly from chemo, I must be pretty healthy! Other than this stupid cold I am now battling, which came hot on the heels of the stomach bug from last week. In spite of those, feeling pretty good – and this also explains last week’s depression.

Hurrah!

Depression makes its sneaky return?

So for the past four nights I’ve found it very difficult to sleep. I have always suffered from insomnia, but usually Trazodone helps take the edge off, and the fatigue from all the treatment has really kept me sleeping. The last few nights I have averaged 5 – 6 hours, and that’s not solid – that’s on and off. That may sound fine to some but as someone who really needs 8, I’ve been struggling.

Additionally, my appetite has suddenly tapered off to nothing, which is VERY unusual. I didn’t even eat a cupcake at Conor’s birthday! Finally, I have been feeling very lackluster – no motivation, no desire, lots of guilt. Couldn’t get a sitter to go a friend’s event last night and felt terribly about it; have a sitter tonight for plans I’ve really been looking forward to, and now have no desire. So now I’m wondering: is my depression returning?

Of course, it could be all the chemicals still in my system, or my hormones readjusting. (More on that later, actually; hard conversation with Dr. K on Wednesday [re hormone treatment] that could be contributing to the blahs). It could also be that I have been battling a cold and am now having GI issues. Or, finally, the insomnia could of course be causing me to feel depressed – it wouldn’t be the first time.

Regardless, I am nervous, and in that curious depression quandary of feeling desperately lonely but not wanting to talk, of wanting company but not wanting to interact. And I’m just trying all the while to act normal in front of the boys because I don’t want them to be children who grow up remembering “When Mom had one of her spells!” I’ll just try to stay aware and if things degrade I’ll talk to a psychiatrist about my meds.

As far as hormone treatment, we met with Dr. K Wednesday and of course he strongly recommended I do the once monthly Lupron shots. I told him no, and he was – I guess probably just concerned, but of course I felt it was disapproving. He asked if I could tell him why, just so he knew, and I started crying as I described the hot flashes, night sweats, wrinkles, roughening of the skin around my jaw, weight gain – all of which happened while I was on Lupron during chemo. I told him I had no problem with growing old, no problem with turning 45, but that I’d like to do it in seven years, when I turn 45. He understood and was supportive, and we agreed to talk about it again down the line. Complicating things for me is the fact that a friend’s mother had breast cancer roughly ten years ago, and she did the full course – chemo, radiation, and hormone therapy – and it has now metastasized. So it’s all a roll of the dice anyhow.

After we left I realized it’s not just the symptoms I don’t want – it’s the daily reminder of those symptoms. That I had cancer, that I can have it again, that it could kill me. I mean it’s always going to be at the back of brain anyhow, but I don’t need to be reminded three times a day when I take the Gabapentin to combat the hot flashes (which by the way I am now off of, yay), as well as every fucking time those hot flashes occur.

The other day I went in to get sugared and it was an aesthetician I hadn’t met before, as mine is out sick. She asked me about my cancer and treatment and when she found out I was through, she remarked, “So you beat cancer.” Which, I am sure she was trying to be nice, but no. No I haven’t and honestly I can’t help but think that I won’t really have “beat cancer” until I die of something else. On the plus side, I told Julian this and it’s led to all sorts of great jokes, like me on my death bed and my last words being, “Suck it, cancer! Heart disease wins again!” (Julian’s: “Yes! Hit by a car! Take that, cancer!”)

Starting Monday, Julian and I are going to try to do a 10-day green smoothie cleanse. I am doing it to get rid of all the poison left in my system and to try to be healthier – I’m hoping it might also help with my joints (which are terrible, and contributing to my depression). He is doing it because he is supportive and amazing. Dr. K gave it the thumbs up so I’m hoping for the best.

This turned out to be a long, rambling post, but I guess I had a lot inside me. Happy Saturday – get out there and live.

Decisions, decisions.

I’m going to try not to go on, because I know reading people’s meandering thoughts on themselves and their issues – whatever those issues may be – can really be quite boring, and I like to think I am not arrogant enough to think my musings are any better than most. Nonetheless:

Being diagnosed with cancer is not a decision, but it’s the start of many. Treat or don’t treat (seems crazy, but look at Jackie¬†Collins)? Lumpectomy or mastectomy? Chemo or no chemo? Naturopathy or no naturopathy? Radiation or no radiation? Hormone therapy or no hormone therapy? And on and on and on. Having cancer is one of the lowest blows I’ve been dealt, but I don’t get to sit back on my laurels and wait it out. I have to do research, ask questions, and look inside my own head and heart for answers that don’t exist, that are just guesses. Educated guesses, but guesses nonetheless. Some people are willing to take everything their doctor says as gospel and just follow that path, which is great – but it’s not for me. I have every faith in my doctor, in his education and experience – but he can only tell me what is right for the majority, not for the individual. And I am, if nothing else, an individual!

So as much as I wish I could simply say, “I’ll do whatever you say, just tell me where and when,” I just can’t. And now here I am at the last decision I mentioned above – hormone therapy or no hormone therapy?

I have talked about it ad nauseam in this blog, so I’ll just do a brief update here. The lesion removed from my breast was determined to be estrogen receptor positive – ER+. What that means, in brief, is that estrogen helps it grow. So as long as my ovaries are releasing estrogen into my system – which, according to Wikipedia, will be for the next 7 – 17 years – any stray cancer cells in my system, or new cancer cells that develop, are likely to be boosted by the estrogen coming from my ovaries. Solution? Taking a pill or getting a shot to turn off my ovaries for the next five years to deprive those cells of estrogen.

The drug of choice to do this is called Tamoxifen, and I have already decided against that. There are a myriad of reasons, which I have discussed in previous posts¬†(several previous posts), but the primary reason is that it and Prozac are completely contraindicated for each other and I am not sacrificing my mental health. I’m just not doing it. So as I mentioned in my last blog, Dr. K suggested I stay on Lupron, which is what I am currently on now along with chemotherapy because it’s supposed to help preserve fertility (in some women, some of the time).

Lupron is… really shitty. I am bloated. I am fat. I am hungry constantly. I am getting new wrinkles (literally, it’s not just in my imagination). I cannot sleep. I have to be on ANOTHER medication to cut back on the hot flashes and night sweats, which were occurring roughly every half an hour – try to imagine waking up every half an hour on sheets completely drenched in sweat. I have never been anti-medication – it’s quite literally what keeps me sane – but I am caught in this medication to treat medication to treat medication cycle right now and I HATE it. I long for the days when all I needed was an antidepressant and an antacid daily! In the end, I don’t want to do Lupron either. Which means, really,¬†I DON’T WANT TO DO HORMONE THERAPY.¬†That’s it.

Last visit, while I was crying about this very subject, Dr. K said that with my cancer, when it was caught, how I’ve opted to treat it, etc., my survival rate is already in the 90th percentile. He also said that hormone therapy will only increase that percentage by a few points. So there’s the decision: Is five years of misery, of not feeling like myself, of pills and shots and feeling like I have no control over my body, worth those few percentage points? And the answer is: No one knows. If I don’t have a recurrence, it’s totally not worth it. If I do have a recurrence – we still don’t know, because I might have had that recurrence even WITH the Lupron.

So I think in the end, my decision, hard as it is, has been made. I will finish my chemo. I will do the radiation. And then I will say au revoir, cancer, and move on with my life.

And although this is already far longer than I intended, let me close with one last decision I have made: Cancer¬†is not going to run the rest of my life. I have seen lots of posts about how breast cancer changes you, how once you’re diagnosed it’s always there, the other shoe waiting to drop (if you’re unclear why, please see my post on metastatic breast cancer). Yeah, it’s changed me. I will never forget this time, nor am I ignorant about what it means for the future. And I’ll follow up with every test suggested, stay on top of my health, remember that 30% of women with breast cancer end up dying from it – but also that 70% of women don’t. I’m planning to be part of that 70%.

2nd to last! Come at me, bro!

So. Let’s see. Where to start.

First the bad: Pretty trivial, but I’m starting to get serious muscle soreness/fatigue. Started after I took Georgie for a long walk. The next day my muscles were quite sore, which I didn’t think much of… but they never stopped being sore. So for about a week and a half I’ve had post-workout muscle soreness. On top of that, things I normally do – charging up two flights of stairs, plopping down on the floor and jumping back up – have become very difficult for me. Essentially I feel like I am in the worst shape of my life – it’s given me a ton of empathy for people who are actually in bad shape, and a lot of gratitude for how I normally feel!

  
Now, the good: Second to last chemo, baby! I’ve made it through 4, five and six to go. So glad to be able to see the light at the end of the tunnel. After 6 I get a three-week break, then six weeks of radiation, five days a week. Not looking forward to that, but Dr. K says for about 2/3 of it I’ll feel pretty good – fatigue won’t hit till near the end. 

Today I asked him about having another baby, assuming I am fertile when this all ends. He said the good news is there will be no danger to me or the baby, and there is no evidence to suggest pregnancy or breastfeeding will cause the cancer to recur. I’ll also be getting checked very often – every 3 months for the first year or two years, I can’t remember, then less and less often. Mammograms only once a year – the three-month checkups will be just physicals and blood work. They can detect breast cancer in blood now! Not with 100% accuracy, but he thinks within the next 5 years things will be even farther along. When people talk about how breast cancer research has not brought about changes, I assume they must not know about amazing advances like this.

The bad news is he also told me he still strongly recommends hormone therapy. Aagagaggahhhhh I DON’T WANT HORMONE THERAPY. I told him I can’t do the Tamoxifen because of my antidepressants, and he said I could stay on Lupron – the drug that has been making me fat, bloated, and giving me new wrinkles and hot flashes/night sweats. Cue the tears and me saying, “I don’t want to be old before my time!” to which he immediately replied that this was MY choice, he will work with me on whatever I choose, and that the difference in survival rate numbers is only a few percentage points given my specific situation. He said let’s quit the Lupron after the next admin, see what happens with my period, get me through radiation, and then see how I’m feeling about it. This is why I have the most awesome oncologist in the world. I love this man like a relative. Seriously, Team Kaplan for the win.

So I cheered up and we came down for the chemo. Last week the place was so full and we waited SO long. This week we waited maybe five minutes and have an awesome chemo nurse, Lauren, whom I love.

Swedish (Hospital) chemo is not like other chemos, from what I have heard. We don’t have the chemo circle here – you’re always in a private cubicle (curtained off) or, less often, in a private room. I think prior to this we have had a private room once or twice. They’re way preferable because you can close the door, talk about whatever you want, watch TV or a movie without worrying about disturbing your neighbors, etc., but they are often filled up quickly for this very reason. 

Today, Lauren asked if we wanted a room and we said HECK YES! Turns out there were three rooms available and we got to choose so did we pick the one with the chair, the bed, and the ensuite bathroom??? YOU BET WE DID!

  
  

So, on a bad news/good news day, the good (as usual) is totally trumping the bad. Had a dream about my Dad last night and he was looking after me again. Grateful for everything, but especially for the support of all my awesome friends (like Mari, who will be joining us here in a bit) and my Mom (who gets here tomorrow night, WOO!!!)
Happy Wednesday!

UPDATE: I have found the fault with this room.

  
Someone has installed the toilet paper roll incorrectly, and I cannot fix it.

Hot! Hot!! Hot!!!

If you’d like to see the full video for this, which is pretty cool if you’re a Cure fan,
check it out
on Vimeo.

One of my least favorite side effects of chemo/Lupron is the hot flashes. They are why I am awake at 5am writing this blog (I’ve been up since 4:30), and why I haven’t had a full night’s sleep in at least a month and a half.

During the day, every 1-2 hours, I feel my face begin to warm, then the first prickles of sweat. This quickly spreads to my head, neck, and then over my entire body, until I feel overheated and covered in perspiration. Sometimes it’s precipitated by a hot room or activity – something as simple as charging up the stairs. Other times I am sitting perfectly still at a comfortable temperature and it comes out of nowhere. I don’t like them during the day – they’re uncomfortable and make me feel gross – but I really hate them at night.

At night, about every 2 – 3 hours, I am woken from a sound sleep by a hot flash. Yesterday, I was taking a daytime nap after having been kept awake by them the night before. I was in the middle of a dream and IN MY DREAM realized I was starting a hot flash, which then woke me up. Each time I am awoken, I have to throw all the covers back and wait the 5 – 10 minutes it takes for the flash to pass. I sleep in a room with a window open in the middle of the winter. This helps cool me off during the hot flash, but once it’s passed, I have to get back under the covers because I’m freezing.¬†¬†I already suffer from and am medicated for insomnia. The medication does not override the hot flashes, nor help me fall back asleep when they come after 4am. When they come in the early morning like this – which is pretty much daily – I am fully awake by the time the flash passes and simply lie in bed thinking of things I could be doing. Now and then I am lucky and can force myself back to sleep around 6, only to be reawoken by my kids between 7 and 8. Today, there’s no point in even trying, as it’s chemo day and I need to be up to shower and get ready at 6:30 anyhow.

Last appointment with my onc, he recommended I try an OTC herbal treatment called Remifemin, which I have dutifully taken twice a day for three weeks, but the hot flashes persist. I’ll tell him that today and he will probably prescribe something, which just makes me feel overwhelmed and angry. Another medication to treat another side effect of another medication to treat… etc. I am over it.

All of the other side effects/complications – even the diarrhea – come and go, ebb and flow. But the hot flashes affect me every single day, because it’s hard to function ¬†normally when I NEVER get a full night’s sleep, and it’s impossible for me to sit still and not exert myself every single day to avoid the daytime flashes.

Today is treatment number 4. Three down, three to go. I will be so glad when this is in the rearview, and I better never get cancer again.

Blah day.

I’m already in a grumpy place because it’s raining here AGAIN while it’s snowing like crazy on the east coast. I loathe winters here anyhow – all gray and rainy, nothing to love – but knowing that they’re getting snow in the place where I’m from (and where I’d rather be living) is the icing on the cake.

But that really just sets the scene for the thing that’s really annoying me. Chemo is causing me to gain weight.I have struggled with my weight/body image issues for literally as long as I can remember – so over 30 years, which is a long time. When I started chemo, the nausea was preventing me from eating normally, and I initially lost 5 pounds. In the weeks since, however, I have noticed that I am nauseated for the first week, then ravenous for the next week. I’m not sure that’s 100% of the problem, though – I suspect it’s more about the Lupron, which I get a shot of every chemo cycle to keep my ovaries shut down. 

I’m about ten pounds up now, still about 10 pounds less than my all-time high, but I feel absolutely miserable. I’m all wide hips, thick thighs, and big butt, with a small, bald head at the very top. I feel like an ostrich. But without the long graceful neck or beautiful plumage. 
  

Anyhow there’s no point to this post except to say damn it, Hollywood, your portrayal of cancer/chemo led me to believe I’d be wasting away to nothing and instead here I am fat and bald. Thanks for giving me unrealistic expectations yet again.

Chemo I: Administration

FIRST CHEMO TODAY!

InstagramCapture_890b3d66-ea4c-4917-9f68-06c49f70b7f4I think I’ll do two posts on these chemos. Because let’s face it – there’s the administration, and then there’s the side effects.

I went in today scared as hell. It was nothing. They numbed the port site with Lidocaine to take my blood and until the Lupron shot, that was the worst pain I had.

So, first: Took two dexamethasones before bed and two in morning before chemo to help avoid allergic reaction. Side effect is insomnia – didn’t have that problem.

Next: Blood work. NBD. No weird taste from saline, which they warned me I might have.

Next:¬†Pre-meds¬†–¬†a combination of two anti-nausea drugs (Emend and Aloxi) and one steroid (Dexamethasone), again to combat allergic reaction. No side effects except for some pain in my port shoulder. VERY mild. I wouldn’t even notice it except for the fact that they told me to report any and all condition changes.

Next: Taxotere. The baddy, this is the one with the more severe side effects of the two chemo drugs (and the one which WILL, the nurse informed me, cause me to lose my hair. “I thought a lucky 20% don’t lose their hair?” I asked her. She looked at me sympathetically. “Well – true. But you will definitely lose some.”*) I had zero reaction to this. Two nurses stood and stared at me while they started the drip and stayed there for about fifteen minutes till they were satisfied I wasn’t going have a seizure or anything, and the next 45 minutes were SUPER smooth sailing, occupied mostly by responding to kind, loving, supportive, and awesome posts and texts from my friends and family (seriously, thank you)!

Next: Potbelly Sandwiches, courtesy of my husband. Not part of the regimen, but it will likely become one.

Next: Cytoxan. They warned me I could get a sinus headache and I did almost immediately. Weird tingling in my nose followed by what felt just like sinus drip (but chemical-y), then slow build of pressure in my head. They slowed the drip and it relieved all but a mild headache. This was another hour, during which Jules and I started watching Trainwreck (it’s all right so far, nothing I’d recommend unless you were bored and wanted something brainless).

Next: Lupron. IN THE ASS. This has to be absorbed through the muscles so I had to get an injection. Seems sort of unfair with this perfectly good port (which by the way, as everyone said, is my best f**king friend after today – no IV!) but nurse’s orders.

After: Slightly dizzy, slightly nauseated, slight headache. Tried to take a nap but couldn’t. Julian sure could.

Now: Still headache, and feeling slightly logy (which may just as easily be a result of the emotional build up as of the meds). Just took some Advil to combat it.

Tonight: Another steroid pill, then two a day for the next three days. Zofran if needed for nausea. If that doesn’t work, Ativan.

TL;DR: Chemo administration was a piece of cake. I am home and well other than a slightly bothersome headache and some fatigue.

Now comes the hard part – side effects. Or will there be any at all? Stay tuned to find out.

*I have had several hair stylists offer to “thin” my hair over the years. I have more hair than God. It’s fine, so it’s super soft, but it’s so incredibly densely packed together that it breaks rubber bands, hearts, and expectations. I have always refused because I was concerned about what the grow out and maintenance would be like. I told Julian, “You know what’s going to happen? My hair is going to thin, become totally lovely and manageable, and I’ll be asking for more chemo to keep it that way.” Jk obviously, but it’s a nice thought.

Tomorrow: Chemo

Tomorrow is the big day – chemo session number one. I have been seeing my BC sisters struggling through chemo, being hospitalized, feeling defeated, vulnerable, and it has prepared me for the worst. Still, I keep hoping for the best – a friend told me his Dad had chemo and was never sick nor did he have any side effects. It happens to some people. Why not me? Keep sending me those warm, fuzzy vibes.

As a refresher, tomorrow I will be getting TC (taxotere/cytoxan) chemo for 3 1/2 hours, beginning at 8am (although I think the actual chemo part doesn’t start till 9ish – check in and blood tests first). I will be getting it through my portacath, which incidentally is still sore. I will also be getting Lupron, which shuts down my ovaries. Studies have shown this helps preserve fertility in pre-menopausal women. Additionally I believe this will also block estrogen from reaching any of those little ER+ cancer cells that might be hanging out anywhere. Down side: I’ll basically be menopausal, with all the awesome symptoms of that, for the duration of the chemo.

I talked to my doctor and we have opted to go cycle one with no Neulasta or daily shots. I am young and healthy, so he says he will check my WBC count before the next cycle. If numbers are good, we can avoid the side effects of those meds. If not, he says he will “have to encourage” me to get them.

Right now the biggest issue for us is everything is the unknown. Will I get sick? How sick? When? Will I lose my hair? All of it? Some of it? My eyebrows? Will I get fat? Lose weight? Be nauseated? Constipated? Have diarrhea? Anything is possible. Nothing is possible. Which makes it all rather impossible.

Waiting and changing

So the reason I haven’t posted anything cancer-related lately is there has been nothing to post. We met with that medical oncologist who made me really unhappy and he sent away for the Oncotype DX test, and there was an insurance snafu, so the results are not back.

In the meantime I made appointments with two other medical oncologists, both recommended by other women who have been through the breast cancer wringer. We met with one today and I cannot even begin to explain the difference. I left the last appointment feeling defeated, worried, unhappy, helpless, and judged. I left this appointment feeling supported, understood, heard, hopeful, healthy, and capable. Where the other doctor basically presented us with statistics and a one-size-fits-all treatment plan, this doctor (also a male) was flexible, agreed that the treatment should be my choice and fit with my life, and cited numerous examples not just of women delaying taking Tamoxifen but also of using a totally different drug, Lupron. He also noted my history of depression and stated that these drugs are contraindicated for depression – something the other doctor didn’t notice/mention – and said that would be a concern and something we’d have to keep a close eye on.

This doctor has mannerisms and phrasing that were so familiar and reminded me so much of my Dad that I finally asked him where he was from. He told me New York City, and when I told him I was from Philadelphia, he said, “Oh you’re not a Phillies and Eagles fan are you?” and snarled disparagingly. LOVE.

Several times during our meeting he touched my hands or my shoulder gently and reassuringly. Everything about him was the polar opposite of what I experienced with the other doctor and I actually cried during this appointment as well – from relief.

I have been walking around for the past two weeks with a gray cloud over my head, feeling fearful and depressed about the future, uncertain how my life was going to play out at the hands of medical professionals. After meeting with this doctor I feel in charge of my treatment, the hows, whats, and whys, and like I have a partner in my care plan, instead of someone who will dictate what I should do and show disapproval if I do not agree.

Could not be more grateful. Really looking forward to moving through this now instead of dreading it.