525,600 minutes later

Well, folks, it’s been one year. One year since my life, and that of my family’s, has been irrevocably changed with the words, “We think it’s cancer.”. I will speak frankly, the last few weeks I have struggled. One year out, I am having alllll the feelings. Grateful to be here, angry that this happened, scared that it will come back or isn’t actually gone, angry that I have lasting side effects from treatment, sad for what my family has endured this year, thankful for the friends and family members that stepped up right by our sides to help carry us through, and on and on and on. It’s. Been. A. Year.

Quick recap….
11/22/16: received the imaging and the radiologist news that they were “95% sure” I had cancer.
Nov 2016-current: freak out
Jan 2017: bilateral mastectomy.
Feb 2017: port placed and chemo begun.
Expanders inflated over several weeks
Feb and March 2017: 4 rounds of AC chemo
April-June 2017: 12 rounds of Taxol chemo
Expanders DE-flated to prepare for radiation.
August-9/12/17: 30 days of radiation.
August 2017: Tamoxifen begun, to take for 5-10 years, with the latest research heavily pointing towards the 10 year, or even indefinite, side of things.
August 2017: port removed
October 2017: expanders inflated AGAIN
TBD…the date of surgery to remove the expanders and place the “permanent” implants, which I’m told last anywhere from 10-20 years before needing to be replaced again. We are aiming for March of 2018, skin needs at least 6 months post radiation to fully heal before my surgeon will do the surgery. Rushing it could lead to a higher rate of implant failure, which could potentially require the implants to be removed, expanders placed again, and the reconstruction process started all over. We do not want that. Good news is that the surgery to do the exchange is not nearly as invasive/difficult as the original surgery, and should be off work for hopefully just 1 week, potentially 2.

As many who have gone before me can attest to, other than the initial shock of the diagnosis, the toughest part mentally has been post-treatment. During treatment, there is SO MUCH happening that it’s hard to catch your breath, hard to spend much mental energy focusing on anything other than getting through it. Plus you feel like you are “fighting” the disease, bombarding your body with all kinds of potent chemicals and radiation that will hopefully eradicate these cancer cells forever. After treatment…it’s calm. You go from constant medical appts to few appts. Which is a welcome change of pace for the ol schedule, but not so much the emotional side of things, when you feel like, “WHO IS WATCHING OUT FOR ME NOW?”. At your periodic oncologist visits (which for me, will be every 4 months for the first few years), you…..talk. Your doctor does a pretty cursory physical exam, feels you up for lumps, feels your lymph nodes, listens to your chest, palpates your abdomen. He or she asks about any strange symptoms that you may have noticed, or changes that popped up. You have your blood drawn for basic labwork. And they say, “see you in 4 months”. This is far too nebulous for me, I crave definite answers. Guarantees. Tangible tests that can be printed out and taken home and I can point to and say, “this right here says I’m all good”. That’s not a part of a breast cancer patient’s story. I could not have remotely handled that information a year ago. To hear, “You will go through hell and back this year, and at the end of it, when you want to know if it was ‘enough’, if cancer has been ‘beaten’, all you will get is, ‘we hope so and time will tell.’”. Well, that, my friends, simply sucks.

I have spent many hours reading and researching and poring over articles, both scientific and anecdotal, about preventing recurrence. You know how it seems we are constantly getting new and conflicting information about what is, or is not, healthy? Eggs are bad for you, because, cholesterol! Wait, no, they are good for you! Alcohol is poison! Wait, not red wine, it’s good for your heart! Well, it’s the same within the cancer community. Flax seed has anti-cancer properties! Put flax on everything! Brush your teeth with it! Roll around in it! Oh wait, unless you have hormone positive cancer, then it can act as a pseudo-estrogen and grow cancer cells! No no, flax is in a different category, it’s still good for you. NO IT WILL KILL YOU, STEP AWAY FROM THE FLAX. Don’t drink alcohol! Alcohol grows breast cancer! Alcohol is fine if you limit it to 1-2 drinks a week. If you need to relax, try lavender essential oil. But not the artificial kind! That kind will kill you. Has to be pure and from the actual lavender plant. OMG THAT IS ALSO A PSEUDOESTROGEN AND WILL KILL YOU. No no, that’s crazy talk (says the person selling essential oils).

It’s overwhelming. I’m still trying to figure it all out. Figure out what changes I want to make going forward, what I don’t need to worry about (HA!), and what changes maybe could help but that I’m not willing to make at this time due to still wanting to live an enjoyable life. I’m having some issues lately that I won’t detail, but that could be Tamoxifen side effects. Some others have suggested that their side effects have been lessened by living a mostly dairy and carb free life. Well. Guess I’ll have to learn to live with the side effects, because that isn’t going to happen. On the lymphedema front, things are holding relatively steady. Don’t need to wear my sleeve every day all day, but definitely need to wear it regularly, at least for now. Which is a huge bummer, but I also don’t notice it anymore nearly as much as I did in the beginning. Hair is growing back in, and my style choices include awkward mohawk, businessman, and fuzzy q-tip. But, when you were once bald, it’s hard to complain about hair anymore! So. Thanks for hanging in there with me this year, all of you. I love you. Please continue to grant me some mercy and patience when I appear to be an even crazier person than I was before. I wish I could say we have reached the end, but in some ways, I’m just getting started, and I’m beyond thankful to have the chance to do so. Happy, HAPPY, Thanksgiving to everyone. 🙂

This 90 degree “fall” isn’t helping my hot flashes

It has been quite the last few months. My apologies for not updating since….June? Geez. I wasn’t even done with chemo quite yet when I made that last post. I think I hit a point where I just didn’t want to talk about it anymore. I felt like my life was jammed full of treatment and side effects and people asking how I was doing (which don’t get me wrong, I appreciate everyone’s concern 100%), but the idea of sitting down and focusing on THE CANCER more than necessary was unappealing.

So here I sit. It’s September. The last few months have gone like this: I finished up chemo on 6/26. It was a bit anticlimactic, I don’t know what I expected, except to FEEL something more about the last time. But I didn’t. It came and went like any other day, and I think it hit me more the following Monday when I didn’t have to go get stuck. Over the next few weeks, I went to see the radiation oncologist to get ready for the next phase. Had tattoos applied to each side, and some stickers that became a part of me for a few months, marking the spots where they needed to line me up on the machine. I saw my plastic surgeon, who deflated my expanders a bit, so that they weren’t in the way of the area that needed to be zapped.

THEN WE WENT ON VACATION. A much needed beach trip to NC, which was everything we wanted it to be.

2 days after returning home, I began the 29 (actually ended up being 30 days, because the machine broke down halfway through one of them so an additional treatment got tacked onto the end) treatments. It went fairly uneventfully for the first few weeks. Barely turned pink/tan. I was fatigued, but it was hard to parse what was due to the chemo residuals and what was due to the radiation. Following treatment, it can take 6 months to a year to really feel like your old self, energy-wise anyways. Then I noticed a small spot under my arm that was starting to peel and look angry….and it got bigger….and bigger…..until it was pretty much the whole area on my underarm/side down to below breast level. In addition to a strip down my sternum, maybe 2 inches wide and 6 inches or so long. Picture a giant rectangle going down my sternum to below my breasts, and then cut straight over to my side, stopping just after slightly wrapping around to my back. That was the area being targeted. Because I had lymph involvement, he wanted to make sure to hit the central lymph nodes near my sternum, as well as the whole area the axillary nodes were taken from, and the entire breast. Because the burning was so extensive, I had to keep it pretty well bandaged/protected, and treated a few times a day with an antibiotic cream. Combined with the fatigue, it was too much to deal with while still working full time, so I ended up going back out on disability leave for 2 weeks and 2 days. Also during this period of time, I started taking the hormone blocking medication, Tamoxifen. This is an enormously vital treatment for those of us with hormone-positive cancer. It works to block those hormone receptors in the cancer cells, so they can’t feed and grow. As my obgyn put it, “it’s like throwing a black tarp over the lawn so sun can’t get to it”. It can come with a host of side effects, but women who have this drug as an option for treatment count themselves “lucky” to have it. I’ll take it for either 5 or 10 years, depending on what the research shows when I reach that point. So far, I have noticed joint pain, especially in my hands, hot flashes, and some irritability. None of it is worth stopping the drug by a long shot. I also said goodbye to that bastard, Mr Port. Thanks for your assistance, don’t let the door hit you on the way out.

So where to go from here? I have returned, again, to work today. Physically speaking, I see my oncologist this Thursday for my first 3 month f/up. I believe I will see him every 3 months for a year, then every 6 months for a few years, then annually after that. I do have some anxiety about going, as I think I will for every single medical appt for a long time. You don’t know what it’s like to go to what you think will be a routine appt and have your life irrevocably changed, until….well, until you do. I saw my obgyn for a physical last week, and was led back to the same room I saw her in when I first found my lump. As soon as the nurse left, I just broke down, it all came rushing back to me. No bad news given this time, though. 🙂

In addition to those f/ups, I will begin seeing my plastic surgeon again for maybe 4 visits to put back the fluid that they took out of the expanders. Radiated skin does not stretch as well as non-radiated, so hopefully it goes ok. Once it’s been stretched out once, it SHOULD make for an easier time the second time around. I have to wait 6 months post-radiation before I get them out, and the permanent implants put in. So that puts me around next March.

This has been one hell of a long road. And that’s an understatement. I’m glad for my mental sanity that I didn’t realize that November day the magnitude of exactly what lay ahead for us during these last 10 months. I feel like my head is still spinning, and I’ve spent so much time IN the fight, that I’m just now starting to come down and breathe. Which, ironically, is where my anxiety is increasing. Learning to cope, learning how to go forward without guarantees or absolutes. I’ll get there, but it’s going to be a while. I know that everyone is probably ready for life to be normal again, nobody more than me…..but it’s just not going to feel like, “whew, all done” for a long, long time.

Debbie Downer, aka my lymphedema therapist

So, I had my lymphedema eval. And it did not go as I had hoped it would. My expectation would be that she would teach me some self massage/drainage techniques to use, perhaps order a compression sleeve that I would wear during certain times that are high risk for swelling (long travel, exercise, etc). Instead, she recommended 3 times a week this week and 3 times next week of coming in to see her for manual lymph drainage, which is basically very light pressure point massage in areas of lymph nodes to get the whole system moving more appropriately, along with wrapping. She applied the wrap yesterday, and by the end of the week will teach me to do it myself, so that I can continue over the weekends when I don’t see her. This picture, by the way, shows what she called a “light wrapping” to start me off with. LIGHT.

I have to keep it on 24/7, with the exception of removing it immediately before my appt with her so that she can measure the arm compared to my other arm, and perform the massage. It’s been just over 24 hours, and let me tell you, I’m loving life right now. Typing at work is interesting. So is cooking. Washing my hands. Doing basically anything. At least it’s not my dominant hand, but still. I was actually measuring a borderline difference between my two arms, as far as whether or not she would even recommend this “intense” treatment period or not at this stage. Since radiation also increases risk of lymphedema, and early treatment is so important in preventing it from becoming worse, we decided to go ahead with it. It will be about 2 weeks with the wrapping, and then I’ll “downgrade” to a compression sleeve that I’ll wear all day, every day, for an indeterminate amount of time. My very optimistic (not at all) PT tells me, this is just life now. That sometimes bodies reset after active cancer treatment is over, and manage the lymphedema well, but we won’t know that now, and the recommendations are that your best chance for preventing it from worsening is to wear a sleeve during the day. She went on to say, “Some women decide they don’t want to do that, and then they are just putting themselves at risk”. After talking with many women in the Facebook support group I’m a part of, it seems that almost nobody has to do this full time forever. They get it under control in a matter of weeks to a few months, then just wear the sleeve during high risk activity or if they notice a period of swelling happening. Occasionally having to revert back to the wrapping for a short time to manage it well again. If she continues to sing the same tune after this first phase of treatment has ended, I’ll seek out a second opinion. Yesterday, after she had me all wrapped up and was talking about how we’ll proceed, I just started crying. And in her ever positive and compassionate ways, she just kept talking, didn’t even offer me a tissue. Shout out to the awesome bedside manner, ma’am.

My last chemo treatment is on Monday. I have been looking forward to this for a very long time, but my excitement is now somewhat tempered by this lymphedema nonsense. I’m having a really hard time coping with it, beyond what I would have expected, and I think it’s that it’s just one more thing. And one more LIFELONG thing. Even if it goes away, and I am told that yes, I don’t have to wear a sleeve constantly, it’s something that I will forever need to be vigilant about, and will rear it’s head on and off for the rest of my life. Which….just sucks. It’s one more reminder that this will never be over. I think some friends and family are looking forward to treatment being done, excited for me, that this nightmare will pass and I can get back to normal life. But, unfortunately, that’s just not reality for people who go through this. Yes, treatment ends, and life gets better. But it’s not over. There are surgical results, left over side effects from the treatment, potential complications from that treatment, and the ever present fear of recurrence. There’s no all clear with breast cancer, no guarantees. You just have to do what you can and hope for the best, and that’s a hard pill to swallow. This whole “journey” is like death from a thousand paper cuts. It’s hard not to feel like things are constantly being piled onto the giant crap pile of stuff to deal with. One thing ends (chemo), another starts (lymphedema). I’m trying to hang in there and roll with it, but I can’t lie….this week bites.
If if anyone wants to read more info about lymphedema, this is a pretty good resource:  http://www.breastcancer.org/treatment/lymphedema/ask_expert/2008_04

 

Stay Puft Marshmallow Arm

It’s been a few since I’ve checked in. Things are plugging along over here. When people ask how I am, I say that overall I’m doing great. Which is true, because I’m comparing things to post surgery recovery, or terrible chemo side effects….but when I really think about it, while I do feel better than I did then, I’m certainly not without side effects now. I find myself telling my oncologist at appointments, “Oh, I’m doing great. Well, I do have this…and this…..and this…….oh, and this…..”. It just serves to remind me that this is going to be a looooong process. The “better” chemo still comes with these side effects (for me, anyways, there are many more than I’ve been lucky enough to not encounter): some neuropathy/numbness/cold intolerance in my hands and feet, stomach upset over the same 2 days every week following infusions, fatigue, eye irritation, rash/breakouts on my face (which is super cool, anything to make me feel more attractive right now), muscle aches/bone pain, and taste changes. In addition to that, having the tissue expanders is uncomfortable all the time, to varying degrees. This week, I did something to tweak one of my pec muscles (which lie over the expanders), so it kept seizing up on me. Not much to do for it other than wait for it to calm down. As I was told, those muscles aren’t intended to have anything shoved under them, so they will essentially freak out now and then as they stretch and get used to it.

In the department of gifts from cancer that will keep on giving, I’ve been doing physical therapy for something that developed as a result of having tons of lymph nodes on the left side yanked unceremoniously out of my body. It’s called “cording”, and is a result of lymphatic tissue that gets inflamed/irritated as a result of messing with those nodes, and attaches itself to the skin, creating the sensation of a cord running down the arm. It makes it feel like a fishing line pulled tight, so when you extend your arm fully, you can’t quite get full range of motion. Mine ran from my armpit all the way down into my thumb. The good news is that this is resolved fairly quickly with therapy, and doesn’t tend to happen again once it goes away. Mine is probably 90% gone at this point. Unfortunately, during the therapy, we noticed that I’m having some very mild swelling in my left hand. So, I’m waiting to get an appointment soon with a different physical therapist that specializes in lymphedema. This is a chronic condition, and again, having lymph nodes removed can increase risk of developing it. So can radiation, which is on the way for me. It’s something that those of us who have had a mastectomy with nodes removed have to monitor….forever. It can develop soon after surgery, or 20 years later. Treatment for it has come a long way. It used to be (and still can be, if not treated adequately) where you would have extreme swelling in one arm, where it was grossly disproportionate to the other arm, and is quite painful and limiting. Now, they treat early and focus on prevention. I need to be cautious of cuts on my left arm/hand, because infection can more easily enter and cause swelling. So that means gloves during gardening, covering with antibacterial meds and bandaids if anything happens, nothing constricting on that side (no blood pressure cuffs, no injections, no tight watches/jewelry), limit time that I’m carrying heavy bags with that arm, etc.  When I meet with the physical therapist, I’ll likely learn some self-massage techniques for lymphatic drainage to help when I notice the swelling, and get a sleeve that I’ll wear during periods of exacerbation, during exercise, and any time I fly. It’s a huge bummer that it’s something else to manage, but everything about this diagnosis is a bummer.

All of this said……things could certainly be worse. I don’t know if it’s just that I’ve had time to adjust, or (more likely) that it’s something that will just continue to wax and wane, but my anxiety about cancer and it returning has improved recently.  I feel confident in my treatment plan, in that we are throwing everything possible at it. I’m doing allllll the things. So, there’s not the feeling of, “Should I have done the full mastectomy/the chemo/the radiation” because……done. I read a recent statistic on the Komen website that said the sneaky cancer cells make it to the lymph nodes, risk of recurrence is about 23%, and if you have radiation, it goes down to about 6%. Seeing as the average woman has a 12% risk of breast cancer, I’ll take that 6%. This is slightly misleading, in that in only speaks to the chance of a local recurrence, and not the odds of metastasis to other areas…..that’s either going to happen or it’s not, and there’s some research to suggest that even in early stage breast cancer, these cells escape early on and go undetected in bones/organs for some time until they start to grow again. But in order to stay sane, I can’t focus on that, I’ll zero in on that 6% instead.

This past Monday, as I drove to chemo (only THREE left to go!), it was a gorgeous day, my windows were down, and I was singing to whatever was on the radio (my apologies to anyone whose ears I assaulted). I thought about what a long way I have come since that day in November that I received this diagnosis. Or even the first handful of times I drove to chemo, crying, or spiraling into anxiety….and now it’s like another errand I have to run. I wouldn’t have pictured it this way, that’s for sure. It goes back to a previous post, where I talked about people being resilient. We really do adjust to what we have to adjust to. Life goes on. And, for me, it’s a good life. Yesterday morning, I went downtown to the Columbus Arts Festival, and walked around, enjoying the day and the scenery, and it was just what I needed. Came home and had lunch with my best guys, and then spent the evening at the local pool cooling off. I definitely appreciated the good things I have yesterday, and will try to continue to do so. Home stretch of treatment, people. I got this.

 

Half marathon

No, not that kind of marathon. Those of you who know me well can now pick yourself up off the floor. Today marks 6 months from the date that I showed up to my mammogram, unsuspecting of any serious problem, and left being told by the radiologist there is a 90% chance that I have breast cancer. The next day at my biopsy it was amended to 95%, and the following Monday it was confirmed. 6 long months. Despite everything, it still feels so surreal. Me? A cancer patient? That can’t be right. But it is.

You hear many adjectives used for people walking this path. Brave. Strong. Resilient. Most days I don’t feel like I’m any of those things. Before this, I lived in fear of something horrific happening, because I felt like I wasn’t made of the kind of cloth that could withstand much horror. With my longstanding depression and anxiety, I felt like sometimes even normal life tipped me over. But the truth is, all of us are brave, strong, and resilient when we have to be. We adapt, even to realities that we don’t want to accept. We can do so much more than we think we can.

I can’t say that now I don’t have fear. I do. I know in an intimate way how close we all are to getting that piece of news that will change our lives forever. But I’m really trying to make an effort to take one day at a time, in all areas of life. My lovely friend, Jen, told me about a quote that helps her immensely:

“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.” Michael J. Fox

That is far easier to live than it is to say. I’ve got decades of experience in imagining terrible things happening. The really big and bad things are rarely things we worry about happening, and far more likely to come out of left field and demolish our sense of control and invincibility.  I can safely say that had I spent time fearing I would get cancer, it wouldn’t have saved me from the diagnosis, or made it any easier to take. “Oh, it’s cancer? Yeah I figured. No biggie, I’ve already logged long mental miles about this.”

I’ve spoken before about having to learn to go back to my normal life at some point. Which is a misnomer, because I can’t do that. This has forever changed me, and not in a, “cancer was a gift, I appreciate every moment of life now” way, though I do attempt to appreciate life and my good prognosis. But what it HAS changed is that I do believe in myself more now. That I CAN handle shitty things thrown my way. I’m doing it. I don’t believe in my body, though. That sucker tried to kill me.

You cannot possibly imagine all the things that go into this diagnosis and treatment. I know I couldn’t before this. It’s relentless. There are many appointments, treatments, many more side effects, radiation, surgeries, hormone therapy, physical therapy, medications….and on and on. All in all, if everything goes according to schedule (which I pretty much illustrated that I have little control over bad things happening so we’ll see about that)  this whole thing will take up about an 18 month slot in my life, from diagnosis to my final planned surgery.  And not just my life, but Sean’s and Quentin’s, and our families.  We all deserve to put this behind us and not waste a moment worrying about what this means for my future, our future. I won’t be able to do that, but I wish I could, and need to make it happen as much as I can. I don’t want to live any of this twice if I can help it.  I want to walk out of this chemo room (where I sit currently), in 6 weeks, and never see the inside walls again. But, if I ever do need to again….I know I will be able to do it. Because I have to. And I know that I AM brave, strong, and resilient.  And so are all of you reading this who may be thinking, “thank god that’s not me, I couldn’t do it”. You could.

I now can count on one hand how many chemo infusions I have left. One. Hand. I finish at the end of June, then get a nice 5 week break before starting daily radiation for 5.5 weeks. When THAT is over, I wait approximately 6 months to heal and for my body to recover and be in a good place for another surgery, to have the tissue expanders replaced with implants. And then…..finito. Finito with a big, fat, beautiful period at the end of it.

Love love love you all. Thank you for your unending support to me and our family.  You’re my favorite people.

Nearly half done….

Just a quick update, since it’s been ages. Last time I wrote, I was hip deep in the AC course. Now, thank god, that’s behind me. Tomorrow will be my 4th Taxol out of 12 weekly treatments. Counting the AC, that means I’ll be halfway through all the chemo as of tomorrow. Yesssssss. It sounds like I can’t possibly only be halfway through, but the AC was every other week, so it should move faster now. Not only that, but it was brutal, and the Taxol has been far easier on me. I may even start to see some hair growing back at some point during these 12 weeks, but we’ll see. I went back to work full time 2 weeks ago, and while I was nervous about how that would go, so far, so good. It’s been good to give my brain something else to do all day, not to mention the structure of getting up and out of the house every day. My HR dept has been very supportive, and I will be able to take off as much time as I need throughout chemo, which will end the last week of June. At that point, I’ll get a break of 2-4 weeks, and then will dive in to radiation for 5.5 weeks, every day. Yuck. However, after going through all this chemo, I am expecting radiation to be not very stressful. Then, I have to heal for at least 6 months before going through my implant exchange surgery. So, next spring-ish? I’ve done a fairly decent job the last month of taking those Bob Wiley baby steps. Getting back to work has helped with that, along with a good counselor. 🙂 I’m just gonna keep plugging ahead until there comes a day when maybe I don’t have to think about cancer several times throughout it. I believe that day is coming.

Channeling Bob Wiley

(I went back and read this after I wrote it, and I pretty much could have erased the entire thing and just wrote “<insert whining here>”, but I’m keeping it anyway. If you’re reading this, I will assume you care how I feel, and well, this is it this week.)

This AC cycle has been both easier and tougher than the last. Physically, WAY easier. I got yet another anti-nausea medication to use, and it helped immensely. I was even able to go out to dinner with my family only a few days after chemo. Compared to the first 2 times, when I wasn’t even able to be out of bed and awake at that time, night and day difference. That’s not to say that I have felt normal, as I most definitely have not. The fatigue/decreased stamina is real. Even when I have otherwise felt somewhat ok, a quick trip to the grocery store, or sometimes even taking a shower, wipes me out. Next to the nausea, the taste bud changes have been one of the biggest challenges. Depending on the timing, everything tastes on a sliding scale of “not right” to “disgusting”. The worst part about this is trying to stay hydrated, as that is incredibly important when going through treatment. It helps flush the drugs out of my system quicker, which helps me feel better faster, and helps minimize the chances of the drugs doing damage to my kidneys and other organs while they are in there working their magic. While everything tastes off, for some reason, I’ve had a tougher time finding drinks I can tolerate than I have food I can eat. Water is the absolute worst, which sucks. You don’t know how nice it is to drink an icy glass of water  until it tastes like metallic garbage.

So what’s been worse about this cycle? The psychological side of things. While staying in the moment has never been a strong suit of mine, it’s next level challenging these days. Some of the misconceptions I had about breast cancer prior to my up close and personal experience with it, were that once you were treated for it, you A) are able to get an “all clear” and go about your business, B) if you GOT that “all clear”, you only had to worry about getting a brand new breast cancer, and C) if you opted for the total mastectomy, you COULDN’T get a brand new breast cancer. All of these are false. Even with a mastectomy, SOME amount breast tissue is always going to be left behind, and it only takes a tiny bit to grow a new tumor. Your chances are smaller the more you remove, which is why I still opted to go this route, but they aren’t gone. As far as being able to ring that victory bell at the end of treatment, it’s complicated. I asked my oncologist at the last appointment how we would know that the cancer is gone. Would I get a PET scan at the end of treatment or at periodic intervals to monitor for recurrence or stubborn cells left behind? Nope. Running scans has an inherent risk, and they haven’t found doing so to have a significant survival benefit. (There’s that pesky “survival rate” phrase again.) Basically, what this means, is that no matter what your stage of cancer (1, 2, or 3), you can skip over all the others and go right to stage 4, which is terminal, at any time. What stage 4 means is that ANY breast cancer cells have dislodged from the breast and taken up a cozy home elsewhere in the body. Which means you can have a tumor in your bones, lungs, liver, etc, and it’s still considered breast cancer because the cells are breast cells. To make myself chuckle, I picture a tiny boob being grown in a liver, but then I realize that would mean very bad things and I stop chuckling. At that point, you are no longer considered curable. There are various treatments you can receive to extend your life, but in most cases, the number of years we are talking about at that point is frighteningly low and I won’t even say out loud. If this happens, it doesn’t really make a significant difference in your life expectancy if they find out earlier rather than later, so they don’t run scans just to check. They only run scans if you are having symptoms that are concerning for metastasis, such as trouble breathing, pain somewhere, etc. This is terrible news for someone like me who needs to know all the things all the time, and also has a history of back pain, and also has a history of anxiety. It’s the perfect storm for me to live in a tornado of anxiety for the rest of my days over every little twinge and possibility. At the end of treatment, if you are having no concerning symptoms, they can assume the treatment worked and you are “NED” which means “no evidence of disease”. There’s no EVIDENCE that you still have cancer, but it’s not an absolute. Which, frankly, scares the living shit out of me. I want absolutes in this business, not assumptions.

The last few days, I have been having fairly significant pain in my lower back and hips. In all likelihood, this is due to a number of factors. I’ve had intermittent issues with lower back pain since high school. Since Quentin was born, it’s been less intermittent and more chronic. I’ve done physical therapy multiple times for it, and it waxes and wanes in severity, but it pretty much always there to some extent. Second, because of the aforementioned fatigue, I’ve spent the last week mostly lying down, which is not great on the back/hips. And lastly, part of the chemo ride is getting an injection the day after treatment of a drug called Neulasta. This is to boost my white blood cells, so that I can continue to receive the chemo the next time around. This is done by causing my bone marrow to go into overdrive producing these cells, and that causes pain in my bones, particularly the largest bones in my body. None of these factors have anything to do with metastasis, but of course that’s where my head goes because it’s a terribly frightening prospect.

In addition, I have been extraordinarily blessed by coworkers that care about me, and have donated their own leave hours to me in order to be able to be off work since early January to recover from surgery and get through this “tougher” chemo regimen. However, I found out on Friday that I previously misunderstood the HR policy on donated leave, and while I will be able to use those hours upon my return to work if I need to be off for treatment/recovery/sick time, I cannot use them now. Because I am currently on short term disability, I get 67% of my pay, which, despite my current complaining, I really am grateful for. The situation could be so much worse. But that means that we are getting significantly less on my paychecks, and that hurts in a very real way. Luckily, we do have our tax refund, so we will survive without having to sell off organs, but it’s not fun. Allow me to stamp my feet and get pissy about the fact that not only do I have cancer, but it’s also taken from me every drop of my leave time from work when I return, a significant amount of money in lost wages and medical bills, and any ability we had to travel at all this summer. After all this, don’t we especially deserve to lie on a beach for a week? I think so. <insert pouting face here> I am currently scheduled to go back to work on April 17th. This allows me to finish the AC chemo and get in one week of the Taxol chemo before heading back. The majority of people have an easier time with the weekly Taxol, and after this financial realization, I really hope I fall into that majority, because there’s no way I can continue to stay home for those 12 weeks.

All of this brings me back to the image at the start of this post from What About Bob. Baby steps. I need to focus on baby steps. I need to find a way to focus on the current thing, and not project to the next thing, because I won’t make it through this if I do. Currently that means not thinking about the what ifs regarding how I will handle the rest of treatment, and longer term, finding a way to continue with the rest of life without worrying about cancer returning to claim me. It’s a big job, and one that I’m finding most younger survivors struggle with. How do you not think about such a thing? Right now I don’t have the answer to that. My rational brain can say, why invest energy in worrying about something that very well may never happen? Hasn’t cancer taken enough from me? But my anxious brain, that I’ve lived with since birth, says, go ahead and worry about that. This week I plan to attend a support group for young women with breast cancer, and maybe I’ll be able to find some peace there. Fingers crossed.

Coming up for air

Hi all. This second round of AC hasn’t been as kind to me. I only started feeling back to myself yesterday, and can expect my third round on Monday. Part of the battle I may have done to myself, as I wasn’t very good this time about self care. One of the things that is very important to do each time is drink a LOT of fluids, which is very tough for me a) naturally, b) when I feel nauseous, and c) when taste buds are affected and many beverages taste disgusting. The other thing I wasn’t great about was using the mouthwash I was recommended religiously, and thus ended up with a thrush infection in my mouth, further complicating things. This time, I will stock up on fluids I think I can tolerate and force em down even if I don’t feel like it. I also got a better anti-nausea med a few days in last time which helped significantly, if only in that it knocked me out so I could sleep well and fast forward time a bit. I know the effects of this are also said to be cumulative over the course, so fingers crossed this time isn’t a beast. Depression was a big part of the battle this time for me, and I didn’t leave the bed much that first week at all. Once I physically started to feel better, the darkness started to lift a little, and I’ve gotten out the past few days a bit.

In better news, we had a great time in Chicago last weekend. Hamilton was outstanding, and we had a fun time at the Field Museum. Quentin loved seeing the Egypt exhibit, and a special exhibit they have currently about soil and insects, and what it would be like if you were shrunk down to the size of a bug. He also takes after me and enjoyed the gem hall, which I always loved as a kid. So many sparkly things!

Coming back home was a bummer. Sunday morning I woke up to my hair starting to fall….so when we got back, we buzzed it short that night after putting Q to bed. Throughout the week it started getting patchy, so a few nights ago Sean took razor to scalp and now I am truly bald. It feels super weird, and like this completely foreign part of my body when I touch it. It’s also completely startling any time I pass a mirror and am not thinking about it. Q has done well though, much better than anticipated when we first warned him this would happen. Kids are adaptable, thank god. I have a feeling once it gets hot out, I’ll start rocking the bald look, but for now, it will be kept under wraps except for this glimpse. 🙂

Almost there.

It’s almost time for my next chemo (Monday), so I’m almost feeling better again. Though, my new “normal” is way different than how I felt normal before. I’m still super tired, no stamina, etc, but I don’t feel BAD necessarily. I felt good enough today to clean house a bit, which felt great. I mean, nobody LIKES cleaning their house, but it had gotten to a point on the main floor that was bad even for us. Sean has been a rock star through all of this, and has done way more of his fair share. But having all three of us sick this last week and him working full time, there wasn’t much time for extra cleaning.

I probably would have bounced back sooner from the chemo last week, but I got hit by this sinus bug shortly after, which knocked me right back down. The pediatrician wouldn’t see Quentin until today (didn’t give a lick about a fever/illness until it lasted at least 72 hours when I called a few days ago). Poor kiddo is down for the second time in 2 weeks. Verdict today is an ear infection in both ears, and a “strong recommendation” to not send him back to school until Monday at the earliest. Boooooo. At least I’m home already, so we don’t have to figure out time off work to accommodate that. Thank god for small things. Speaking of god, Q got antibiotics and before taking it today, he prayed that it would taste ok. Haha. Perhaps he isn’t praying correctly. It reminded me of that old Phil Hartman SNL sketch where he’s Jesus, and appears to Sally Field in her house after she prays for an assortment of ridiculous things and is like, “Lady, you’ve got to cool it.”

https://www.nbc.com/saturday-night-live/video/dont-pray-so-much/n10516?snl=1

We are heading to Chicago this weekend, for various fun times. Sean and I get to see Hamilton (YAY!) on Saturday, and then on Sunday we are taking Q to the Field Museum. He has always been fascinated with Egypt and mummies, and they have a big Egyptian exhibit. I may be wearing a mask, as I’ve been advised to avoid any crowded spaces during chemo, and I may have to use a wheelchair through the museum due to having little energy (thanks in advance for the pushing around, Sean), but hopefully we are able to have a great time. We deserve this.

In other news…..the estimated time of departure for my hair is 14-16 days after the first chemo session, which is Monday-Wednesday of next week. I’m thinking I will go ahead and have Sean buzz it on Monday evening, so I don’t have to watch that happen piece by piece. I will likely have a mohawk for at least a moment, and perhaps you will be lucky enough to see a picture of that moment. Stay tuned. I think I’m as ready as one can be, got my stock pile of scarves and hats and one wig ready to go. You can guess which one is the wig I actually bought. Or maybe not.

I tried to knit myself a hat yesterday, and ended up throwing my double pointed needles in frustration, as I didn’t have the right size circular ones, and dpns are a pain in the butt. Maybe I’ll try again. In the meantime, I have these options:

Hopefully I figure out how to tie the scarves….the attempts I’ve made so far have been….less than totally successful. I honestly don’t see myself wearing the wig much at all, but we’ll see. Maybe I’ll be surprised.

Next post will hopefully be pictures from our FUN time in Chicago. 🙂

Starting to emerge?

Chemo, guys. It’s not cool. In case you were looking for ideas for your next vacation…..I do not recommend chemo land. All the motion sickness, none of the fun.

At first, everything was fine. I came home, ate a normal dinner, waited around for THINGS TO HAPPEN. Took these pictures.

Then things got less fun. Nausea that the meds mostly kept under control, but not so under control that I felt good. Extreme fatigue. Not just physical, but mental. Not able to concentrate on a tv show, or read a book, or even page through a magazine. I am still in this phase, which is why this post will be short. Writing feels like trudging through quick sand. Here’s what my med arsenal looks like for the moment:

Jealous? Don’t be. Winter bird is about to have a par-tay.

The last few days have looked way less like the above “fun with chemo bear” and much more “sad sack chemo girl”. Carry on.