Photos from a recent business trip to Chicago
The seasons are changing here in Utah. Every season, when it begins to snow I ask myself the meaning of life, “why the heck do I still live in Utah?” The answer is usually not 42.
In Utah we say “heck” instead of the other word, and “darn” instead of the other word because our relatives of the dominant religion have a preference for avoiding the swear words, so we make up new ones that kind of sound like the ones that they are replacing and we use them in the same context. Yet, somehow they are less offensive. The initial name of this blog was going to involve a swear word, but I love my family, and I don’t care to offend, until the post where I explain this whole swear words replacement thing-a-ma-gig… now hopefully they are still talking to me.
I bring this up partially because my employee sent me a blog to review to see if we wanted to ask the blogger to write some content for us and my response was “oh boy, does she like to swear.” He stared at me and said “you swear.” I said “no I don’t, I am the nonsweariest person you know.” This then turned into a discussion about how I am not allowed to make up words. Of course I am allowed to make up words, I had cancer for gosh-sake (this is really how we talk in Utah), I can rewrite the gosh-darn dictionary if gosh-darn want to.
On the topic of living in Utah, my husband lives here and my family lives here and I kind of like them, so here I am. Utah. It is actually a very beautiful place, but the air quality sucks. Especially in the winter, and it is not helping my lung-asthma-cough-thing. Oh yeah, my job is here also, my company is national and we have offices all over, but the big office of awesome souls resides right here in Utah.
I am craving palm trees and ocean and beaches…. so I sort of booked us flights to Grand Cayman, coincidentally (or not so coincidentally) scheduled right after we get the next status update on my lung nodules, because I am running away for a week, good news or bad. HA!
Ok. I booked plane tickets, but wasn’t paying as careful attention to the cost of hotels in Grand Cayman. I researched around and figured it out, but experienced a little sticker shock at first (being the kind of gal who likes ocean front and a balcony, but am not willing to pay the price of a Prada purse to get it). We are now staying at a nice boutique hotel walking distance to the beach in the middle of shopping for a couple of days and then running off to hide in our own little ocean front cottage for a few more days. I had vacation ADD. I couldn’t decided if I wanted to be in the thick of things or off relaxing, so I decided we would do a bit of both.
So come on Utah, bring on the snow, palm trees are ahead. Brrrrrrrr.
I painted this while after my lung CT. My husband feels like it was indicative of my mood.
Except I don’t have a wheeze. I have a cough.
I had my follow up appointment with the lung dude (that is what I have started to call the pulmonologist the “lung dude”). I had a quick chest Xray before my appointment. The waiting room for most scans, of all kinds, happens to be next to the breast cancer clinic and my favorite surgical oncology nurse walked by and gave me a funny look (in a good way, because she cares). She asked me what I was doing in that area. I explained that we were making sure my lung wasn’t deflating more than it already had, nothing too exciting (really, because I am not stressed about that one, just need to not have high impact chest injuries right now).
When it was appointment time, the “lung dude” came in, I explained that my energy was through the roof (I am talking bouncing off walls here, BOUNCING). I have been spending a lot of quality time with friends (which makes me super happy because I spent a few weekends in bed – seriously brings tears to my eyes how much awesome time I have spent with awesome people since we have been able to get my energy up and me feeling better). I am not falling asleep on the couch the minute I get home from work (which was seriously freaking my husband out, I haven’t done that since radiation). I have actually been cooking dinner on a very regular basis again (cooking is also how I unwind, so when I can’t cook for a few weeks, it is usually a bad sign on my energy level). I have been a busy little bee! I have been coughing every few days vs. every few hours.
This gave the verdict that the Advair worked. His official term was “obstructive lung disease-ish,” ok maybe less official, but I couldn’t remember the words he used. When I tried to remember after the appointment. My mom insisted he meant something along the lines of asthma (the coughing kind will pass the asthma test that I passed, and sadly the air in Utah is bad bad bad, even if the mountains are pretty). The coughing kind of asthma will pass a normal kind of asthma test (confusing I know) and they don’t really know the cause of this one either (although allergy or an illness can come into play).
No more experimenting. Mandi is fixed. YAY. Well, sort of… I will continue taking Advair for a few months and then we will try to take me off because he doesn’t want me on it permanently if I don’t have to be on it (cross your fingers kids).
When they looked at my lung Xray they said “wow, your lungs look amazing, I wish all of our patients lungs looked like this,” which kind of makes you proud for 5 seconds, until your realize you are hanging out in the lung cancer clinic and then it kind of takes your breath away (literally and figuratively).
They don’t have us breast cancer people wander on down and back and forth (it is all about “clinics” people… which feels a little separated (especially in the middle of October where I am constantly biting my tongue because I love people and people mean the best). Usually, you have people who specialize in your area if you have a common cancer such as breast cancer. I had been sent to the pulmonologists at Huntsman because they are good doctors and they could squeeze me in quickly (unlike most specialists) and it is nice to have someone close by check it things out that can walk upstairs and chat with my oncologist.
This brought me to my next point with “lung dude.” I asked if I should simplify, simplify, simplify. Should I have my general practitioner deal with the Advair and have my Oncologist deal with the nodules. This is when he explained trying to take me off Advair (which is a good thing, because I didn’t explain to him that I regularly attempt weening myself off of major medications – except Tamoxifen – to try to cut down on all of the crap I take these days – which isn’t always a good thing to do on your own, but I am a rebel – I never just take meds long term).
I discussed that my oncology NP had suggested that we would do a 3 month CT vs. his recommended 6 month and if I should check in/run the whole thing though “team pink.” He sounded like he really wanted to hang out with me over the next couple of years while we do all of the fun CTs to verify no nodular growth in my lungs a.k.a. no metastatic breast cancer (not that we think I have it, but “with my history, we have to rule it out”). He decided that the 3 month mark made sense and switched my 6 month CT to 3 months, and now we do “the big-you-are-fine checkup” on January 15th.
I like him. So, welcome to the ride Dr. Boltrax
My lungs from every angle
The loveliest of lovely people at Huntsman got me squeezed in with the Pulmonologist up there today (when they say next available appointment I usually expect day or two), which is good because Mike and I took work off because we were not quite in the best mental place after hearing the word “nodules” involving my lungs… We had expected a clear CT in the back of our minds. We were sort of thrown into a strange place because that is what a tumor in the lung is usually called at first… a nodule. Not to mention a collapsed lung (no matter how small it is, how strange is that?).
We are both back to a level of mental calm after the storm because we have learned that your body really can only handle a certain amount of freak-out and then you have to find your happier place.
We were shipped off to a new wing at the Huntsman. This clinic was much larger than the breast cancer clinic, and it was covered in rich mahogany (ok I don’t know what wood it was, but it was pretty). It is a large hospital and you get used to your own nooks and crannies, so new areas seem like very uncharted territory. One thing I do love about the Huntsman is that they do hire really good doctors and great nurses, for some reason I always really extra love the nurses.
When we met with the doctor he sat down and we went over my vast history of attempts at squelching my phantom cough. From antibiotics, to asthma tests, to steroids, to dancing around fires (maybe not a lot of dancing around fires), but my GP had exhausted a lot of stuff and I am exhausted. Coughing hard, often, makes you pretty exhausted.
He then scrolled through my CT. The nurse seemed to have a small giggle at the size of my nodules (that may not really have been the case, but they of course they DO work with real life lung cancer vs. these little guys), I almost felt inadequate, except that I don’t want large nodules. I don’t want any nodules… they really did have to dig around for them a bit. I tried to get an idea what part of my lung they were in (they didn’t mark quadrants in the report). The left one was sort of aligned with my tumor (ick) not sure where the right ones were… they also located my pnuemothorax after some scrolling. You could see what looked like scar tissue and a not happy area. What freaks me out is that there are so many of them (I have no idea if that is good or bad from a medical perspective).
Ultimately, he didn’t feel like anything on my CT was causing my cough. The nodules were too small, the pnuemothorax was too small (feelings of inadequacy talking again over here…). So we go back to the experimentation game of ruling stuff out. I am going on Advair along with a cough suppressant for 3 weeks and then an antacid for 3 weeks. Exploring asthma (again) or acid reflux (did you know reflux causes coughing?). If that doesn’t work we start digging some more… he described that there could be a nodule in my breathing area that the CT could have missed or damage to my esophagus from radiation that is causing reflux – both quite possible now that I visually saw the damage to my lung and remember them having to move my radiation path off of my esophagus within the first week because my throat was sore. The Pulmonologist even made a comment similar to the one rolling around in my brain about all of this popping up even though it was a whole 2 years later (I knew I liked him). Now I feel like I need to visit my radiation oncologist who I have been ignoring in my cycle of doctors visits because I feel like I have way too many doctors visits…
I asked what are we supposed to do about the nodules? He got a fairly serious look and essentially said that we watch them. Yay, my favorite, more lumpy things to monitor (that was my sarcastic tone). His plan is a 6 month CT to see if they get bigger although my oncology team had suggested a 3 month CT, but I see my oncology team within the next 3 months, so I can gather their take in the meantime (and I know my oncologist is getting the full update tomorrow when she gets back). So, for the time being, the 6 month CT is scheduled. They don’t seem to like to biopsy ones this small without some idea on how long they have been there and what they are doing. He had asked if I had met with my oncologist yet on all of this and I had noted that I had not.
So, in 3 weeks I get a lung x-ray to make sure my wee bitty lung collapse isn’t up to no good (the pulmonologist thinks it will go away on its own), and we switch meds. Hopefully by then my phantom cough has just gone away on its own.
My favorite part… As we walked out of the exam room the doctor mentioned everything being as “clear as mud.” I knew I liked him.
I may not have won the award I was a finalist for, but I am a winner everyday because of the awesome people I work with. These came after the ceremony with the note "You are a winner to us!!"
I am a pest. Pesty McPesterton right here (by the way, when you blog, there is an unwritten rule that you get to make up words). I was going to have a psychological meltdown today. I was hanging on by a thread or two… I did good-ish. -sigh-
I left 3 messages for the oncology nurses and then started to wonder why the nurses hadn’t called me back. They usually call me back so quickly when I leave a message (with an ALL CLEAR YAY!), but now they weren’t calling me back. To me this usually meant I was waiting for a doctor or nurse practitioner to call me… they tend to take a little bit longer (and my oncologist is not in town). Gaahhhhhh. I managed to stay so calm all weekend and I was 99% sure my cough and chest pain would just magically go away now that I had been scanned because everything was going to be normal. I think I can add up how many days of my life have been spent waiting for scan results… too many.
So the good news is, I have two lungs, they are in my chest and they fill with air ALMOST all of the way. Apparently I have something called a pneumothorax which was described at “miniscule apical pnuemothorax” on my left lung which means it is collapsed a teensy bit at the bottom (I think, I am not a medical professional, I use Dr. Google). Which is usually caused by a traumatic injury and I guess this little guy wasn’t around in my old CT (they compared the CT to my PET CT from 2011). It sounds like this is an injury from radiation based on the labs (and location). It is “an unusual appearance and not definitely mass like” (because that is like, science!). There is also some other indent or whatever that looks like radiation ouchies (I was warned they were going to get some of my lung and maybe some of my heart, now we see it I think…). Whether or not this is the cause of my chest pain and cough is yet to be officially determined since radiation was almost exactly 2 years ago. Happy Cancerversary to me on Thursday! 2 years from the last day of radiation.
I also have 5 teensy pulmonary nodules (all less than 5 mm). One next to the unhappy lung area noted above and four in lymph-node-like locations in my right lung. Cancer was on my left side, so they are mostly on my right…
The comparison did not show these nodules in my PET CT from years go, but the notes said that they could have been missed because they are so small and they weren’t looking as closely at my lungs, so who knows. They may have been there hanging out, maybe not, but they weren’t glowing back then I assume, since they were making me glow.
I am waiting to find out when I will have an appointment with a Pulmonologist at Huntsman who will decide if they can/will/want to biopsy and try and look at my “unusual” pnuemothorax. It sounds like they will at least CT again in 3 months (more things to monitor, yay). My oncologist gets back from traveling on Thursday and will also look everything over and we will see what she thinks we should do.
Luckily my Oncology NP sent me the actual lab reports because the report has me much calmer than the description sounded in my head non-physical-report (everyone loves an optimistic radiologist, as we know I have met the pessimistic ones, that just made me giggle… I think I am giddy from lack of sleep). Initial description essentially sent both Mike and I in a tailspin. I think we are calm-ish now.
So, I won’t lie, “nodules” was the word we really were trying to avoid on this report… but so far everything looks fairly optimistic. I want to go back to being pessimistic though, because I was being super optimistic my scan wouldn’t show any problems. This is why my pessimist and my optimist are always fighting.
Help fund Catherine's dream to write a novel!
So, last year I stuffed all of this extra money into my health savings account expecting to be scanned left and right and up and down and back and forth and that wasn’t really how it worked out. I had a couple of ultrasounds, a bone scan and one mighty fine year. Not needing the money was fine, except that account is “use it or lose it” so I lost it… this year I was wise and put just barely enough money in there for prescriptions. Haha. Just makes me laugh (we were able to double insure me mid way through treatment, so having two insurance companies picking up the tab certainly helps, just my planning sucks).
I have been keeping myself busy with bumpy lumpies, now it is time to look at the mess sitting underneath. Friday is my lung CT. 1 clear x-ray, 1 week of allergy medication, 2 rounds of antibiotics, 1 round of steroids, a clear asthma test and 2 weeks on an inhaler and I am still a ball full of cough-ness and fatigue (and sunshine, loads of sunshine and happiness). I didn’t push it (I was scared to), I followed up with my GP as she requested, and she felt this was the next course of action after my asthma test. Circling back with my oncology team they agreed and here we are.
Still waiting on those MRI results…
On a happier note, I find out if I won the cool award for women in technology that I was a finalist for on Thursday. Being a finalist was a super big honor, and I find out in front of 600 people which is a little scary. Wish me luck!
P.S. Catherine whom I love and adore has a Kickstarter going on and I think we should continue to help her surpass her original goal to fund her first novel. Read about it here or click on the image above.
Sometimes I just wonder what should be a big deal and what shouldn’t be a big deal and when I can relax. I guess I should always relax, stress isn’t good for you.
After my adventures last week I decided that I would make an appointment with my plastic surgeon to talk about the small revision I had been considering to my initial reconstructive surgeries (hey, he did a good job, but… you know… I have a part that I want evened out a little bit). The other reason I wanted to talk revision is I wanted to see about getting the lumps removed, oh, and I think I might have a leak in my implant. I have just been pretending to ignore it (or I have some fluid in there with the implant).
He was totally fine with the revision part, but told me I have to get my cough cleared up before surgery (I wasn’t actually planning on doing it in the next couple of months, so I BETTER not have this cough). He was less excited about removing the lumps. The skin is thin there, it was radiated, we still haven’t a clue what the lumps truly are… His instinct was that they are related to the surgery and where they attached the muscle inside everything. He did not feel like they were fat necrosis (which I guess they do remove all of the time for the sake of sanity, so I am not the only slightly neurotic post-cancer lumpy lady out there). I took along my mother for mental support (she was slightly miffed at me for not bringing her to my last appointment, I usually expect to be in and out and back to the office, adventure free, so emotional support isn’t usually a part of my appointment planning).
The plastic surgeon’s response was that we should REALLY take a good look at these lumps and then I can decide if I truly want them out. If I want them out, he will take them out, but that we should just really look at them very closely first (which translates to: you have had a bajillion surgical complications, you are thinking about going in there on a perfectly good looking reconstruction and chance messing it up, so make sure you really want to do this). I see his point.
A possible implant leak requires an MRI anyway.
Sooooo. Step 1 was another mammogram. You should have seen the look on the poor tech’s face when she realized she was going to be attempting to image me again… one week later… on the other “boob,” and it just didn’t work. I get it now. When you have breasts with implants, they get your breast tissue in there, not the implant. When you don’t have breast tissue, they got nothing but implant to take an image of… she tried. She really gave it a good try. She sort of got a bit of a picture of the muscle (which is what I have in there, which I am sure looks pretty odd when you are used to looking at breast tissue all day). They sent me back to the waiting room.
I got called in for an ultrasound. I exclaimed “again!” I guess I should have been less exclamatory, but you know… gah. This time I got a student first who was very nice and had no idea what he was looking at. I was worried I was going to have the same radiologist as I had last week, I did get the same one. Although this time he was very very pleasant (I do swear I caught him on a bad day last time… it was just odd).
He had spent some time looking at my ooolllldddddd images because he had a discussion with my mom about the DCIS I had which permanently freaks her out because you can’t see it on an ultrasound (but normally you can on a mammogram). He actually explained that they did see a lot of it in the early images (it shows up as calcifications). Part of the reason it is a little freaky is because we don’t fully know where all of the cancer was in my breast since there was more than the tumors identified in my breast and lymph node – there was an extensive amount of DCIS (which never included a measurement, just that word, “extensive” which to us means EVERYWHERE).
I calmly explained that after the appointment last week I was thinking about removing the unknown lumps. He gave them a good look and figured the MRI was a fine next step and suggested that they could carefully do a biopsy if that was what was decided after the MRI (he still stood his ground that they MRI is tricky and may not tell us any more than we know from the ultrasounds and tests done so far). It seems like they don’t look like scar tissue according to the radiologist and my plastic surgeon doesn’t think they are fat necrosis and no one thinks that they are cancer. The radiologist did find a dark round cyst/possible necrosis while digging around (I guess I am full of weird tissue things going on).
So now I have an MRI scheduled, which I needed to do anyway, but the whole thing is just making me tired and I am wondering how much I want to pursue and how much I just want to go back to watching and waiting. Having had two lung infections/colds/who-knows-what and bronchitis for the last 4 weeks hasn’t helped my energy level either… I am on my second round of antibiotics and an inhaler and now my lungs have me a little freaked out. We have a clean x-ray on them, but what do you do? I can’t decide if I should be annoying and bug my doctors (I tried to make an appointment while I was there today, which they mistook as me wanting to talk to the doctor “right now” – and her response delivered via a nurse was to go to my GP and get an inhaler – which I have already done and now I don’t feel like pushing it).
Oh, and this came in the mail (I am assuming that it goes with every abnormal mammogram, even if they go ahead and do the follow up right then):
So at what point am I being a vigilant patient and at what point am I just paranoid?
I feel like I need to take a chill pill and I am starting to feel annoying. No one wants to be the annoying patient, I prefer being the cool, calm, and collected and sometimes funny patient. The verdict is still very strong not cancer, and I am not strongly concerned that it is, I just somehow ended up with a little doubt that crept into my mind that maybe this process will put to rest (the lumps have always worried me a little). Maybe knowing what the lumps actually are will help, maybe I will drop it and we will never know. So now everything is as clear as mud, and I have a cough.
“I won’t be able to tell from an ultrasound if this is cancer or not cancer”
That is totally what I wanted to hear from the radiologist right before he does an ultrasound to check a lump.
I had my quarterly check up, not stressed, not one bit. I had my favorite purple smoothie in hand. I had had a cough thing going on that had been chest x-ray-ed antibiotics administered the previous week and that had been the only random thing weighing on my mind. I wasn’t expecting my doctor to find a good sized lump hiding under my implant on my noncancerous side. Quite frankly I was pretty embarrassed that I had not noticed this lump myself (very embarrassed, how the heck did I miss that one…?). She drew a big circle and figured we do the whole “check it because it is the right thing to do” and the rest of that appointment with her was just dandy.
I was grabbed for my visit with the mammogram/diagnostic crew and here is where it got weird.
I sat in the waiting room in my gown. Everyone got pulled in for their mammos and I waited and waited and waited and a tech grabbed me and pulled me in the room with a mammography machine, because she needed to ask me a quick question. She asked me where the lump was located. I showed her and she explained that the radiologist and my doctors (they had pulled my plastic surgeon into the discussion) were trying to decide if I needed a mammogram or an ultrasound.
What, what? A mammogram!? I thought I never needed one of those. I don’t have any real “boobs.” That was the ultimate “no boob” bonus, or so I thought…
She put me back in the waiting room and I got regular updates that they were still deciding, an hour passed. The tech eventually grabbed me for my second mammogram (I guess technically my third because I had two on my day of diagnosis). She made a kind of half attempt at the thing because I guess she didn’t know beforehand that I had an implant and that somehow changed everything (I guess she thought she was just putting in the flap, not the flap and implant). The lump was sitting up under the implant in my armpit area, so I have no idea how they would have gotten it into the machine anyway. I made jokes about supposed to be “getting out of these mammogram things” and she didn’t think I was that funny, but by now I wasn’t in the best mood, so maybe I just wasn’t very funny.
Once she made a quick attempt at getting an image they put me back in the waiting room.
I was eventually told they would go ahead and do an ultrasound and this is when the radiologist walked in and told me. “I won’t be able to tell if this is cancer or fat necrosis from an ultrasound, only from a mammogram.” He told me that they could do an MRI, but that fat necrosis also absorbs dye just like cancer and can end up looking the same too. The only definitive way to tell was a mammogram (I got the sense that this was the argument he had been having with my doctors for the past hour). I asked him if I should go back in and try to get it in the mammogram machine and he just kind of stared at me.
I looked back at him and a couple of tears started to form in the corners of my eyes.
Telling me you can’t tell is saying it “might” be cancer and 30 minutes ago I was 99.99% certain there was no possible way I had cancer clear on the other side of my body underneath an implant in a breast that doesn’t have any breast tissue…. but now… now you can’t tell the difference?
My first response is that we have some major issues in that case because I have a diagnosis of fat necrosis on my cancerous side, and no one has ever done a mammogram over there, so maybe we need to go shove that one in the machine too just to be sure (hey, I was all about the mammograms at this point). I asked if he would just biopsy the darn thing and he told me that it was too close to the implant to risk it when the chance of it being cancer was so low. He eventually decided that it wasn’t really a lump because it only looked like a lump from one angle and when palpitated it didn’t feel like cancer (because now we can just feel cancer? Although it is a soft lump and didn’t really feel like the cancerous lump…). Which, again, fine, I didn’t expect it to be, but this wasn’t exactly how I thought he would go about it.
When he looked at the cancerous side he started to try to convince me the lump was a valve in my implant. There is no valve in my implant?
Him: “It is saline right”
Me: “Nope, that is silicone”
Then it was the fact that the implant was against the skin without any tissue and not a lump at all… he wasn’t trying very hard… (you can really feel those lumps with your fingertips, they are definitely there, and big). When he got the lump on screen it also did not have “cancer like qualities.” Which it formed practically magically overnight when it did form, so I never had expected it really to be cancer either, but now I am a little freaked out because apparently you can’t tell from an ultrasound..?
He proceeded to tell me that I really didn’t have much to be concerned about and did he properly address all of my concerns? Wait what? I just said yes, arguing wasn’t going to get me anywhere and he clearly didn’t want to be looking at me in the first place and trying to convince me there was a valve in my silicone implants rather than a lump in there had sort of impacted my opinion of his medical expertise today already.
The Huntsman has a lot of amazing staff, this is not my normal experience at all. So please don’t let it impact your opinion. I think I caught someone on a bad day… I have bad days, we all have bad days. Maybe he was just trying to be more straightforward with me than the previous radiologists, but that is a little eepy.
I had been going back and forth on having a small revision on my right side to take in a little extra flappy flap over there and see if they could go in and remove these lumps on the cancerous side because they seem to be a never ending source of fun. I am thinking more about it lately and may explore that option sooner than I had planned.
This all left me just a wee bit frazzled.
P.S. I don’t really think any of them are really cancer, so no freaking out. This was just a headache of a day.
I have been making an effort to be positive lately.
It may sound funny because as I started this breast cancer blog I surrounded myself with positivity (and maybe a wee bit of sarcasm, ok… a lot of sarcasm). I laughed at the random things that probably wouldn’t make most human beings laugh and I made it through each day so that I could wake up the next and say “wow, it is awesome to be here!” I was making some serious darn good lemonade.
I have noted in some previous posts that I have lost a bit of that. Overwhelmed with anxiety, stress, depression and the ups and downs that come with my hormones being out of wack isn’t always a pretty picture. I created a huge upheaval and moved my husband and I to a beautiful new home (which I looooovveeee, but sometimes wonder about my motive).
I am learning that I do truly control my own happiness (which is often hard to believe). I can’t control the things that happen around me, or what the people in my life do, but I can control how I feel about all of it. That doesn’t mean I am not going to get sad or angry, but I am forcing myself to remember to take a step back and wonder if being miserable about something is really worth it.
I am a pessimist at heart, so this is a bit of an inner battle for me, but I am finding that the more I push my outlook to be brighter the better I feel. Honestly, I think some of my happiest days, were days while I was in treatment. This may sound completely bonkers (hey I never claimed to not be a little bit on the wacky side), but seriously… I would make myself live in the moment, because the moment was exactly I had. I didn’t want to dwell on what happened the previous week or what was going to happen next week. I wanted to enjoy the glass of wine in my hand (yes my oncologist let me drink wine), the sun shining on my face, my handsome husband in the other room cooking dinner, the sound of birds chirping, the summer breeze and the fuzzy dog in my lap. Being sick didn’t exactly make me happy, but I was telling myself to be happy, and that made me happy.
Don’t worry, I haven’t gone all woo-woo on you, but I have been learning that loving those moments is worth it. Living in the moment is worth it and controlling your own happiness is worth it. So I am going to make the most of what I can, be as positive as I can (and just pretend not to be cranky the rest of the time, because I am NEVER cranky I swear ).
My little brother and I enjoying some soccer. No brains were hurt in the making of this photo.
Unfortunately (or fortunately, depending on which side of the zombie obsession you are on) getting a brain MRI just makes me think of zombies. I am not sure why. I am not really a big zombie person… but I kept calling it braaaaiiiiinnnss (apparently I have them (brains), and luckily nothing else is hanging out around up there unusual after a weird series of month long migraine headaches). It did of course come with a bit of scanxiety, but more of it near the end vs. days of nonstop worry. I was a bit more surprised at my level of relief (tears), because I think I was stewing more under the surface than my brain let on, but it was hurting so much I couldn’t think too hard anyway. I have since started migraine preventative medication that seems to be doing the trick.
I have many blog posts over the past few months sitting here behind my log-in stewing, boiling and brewing. Half completed thoughts that have never quite figured out how to come to life. As I had said when I started blogging about breast cancer, my intent was to put words on virtual paper to get them from swimming around in my head. It is therapeutic in its own way, but sometimes you just have to massage them before you put them out there. I think these days I think too hard about what I should and should not say. This is probably not the best way to go about it, but it is what it is. I write, I delete, I write, I save… I leave it and I simmer. It is hard sometimes to be public about something so personal, but it helps people. I know this from the emails I receive and women I have spoken with. Which is why I still post.
I have a lot of amazingly great things going on in my life. I am a finalist for a pretty cool award for accomplishments in my career (which would never have been possible without the amazing support system I have at work). Work is stressful, but rewarding as usual. My husband is adorable. I can actually wear a PONYTAIL (I think someone forgot to tell me it takes 2 years to be able to wear a ponytail again). Now I always wear my hair up (almost always… ok… A LOT). Also, I am really enjoying being able to add adorable sundresses that have tube tops to my wardrobe (something I was never, ever, ever, ever able to wear before my reconstruction).
We have had a very busy fun filled summer with family and friends. All in all I can’t complain.
These days a bit of my thoughts are a bit more occupied with two women that are going through the upheaval of recurrence or strong possibility of recurrence. I wanted to share them with you because I <3 them both, and if you follow breast cancer blogs, you may want to add them to your list.
Jen – Jen started treatment about a month after me. I remembered poking around the internet for other women in Utah that were writing about breast cancer and their treatment and found Jen. I sent her an email and thus began our interaction. We have since met a few times and kept in touch via blogs, Facebook, email etc. Jen has won a lot of bike races (her 2013 involved standing on a lot of podiums with checks bigger than I am). She has been amazingly supportive in the ups and downs in all of this. She recently discovered a tumor in her lymph node on her cancerous side and is starting chemo again next Tuesday. Read about her here >
Catherine – Catherine is a writer (and world traveler). She was diagnosed with breast cancer shortly before she turned 28. I can’t actually remember how we first connected, but her tender heart and beautiful writing (along with creative drawings) have pulled me alongside during her adventures through breast cancer and finding her way after breast cancer. She makes me laugh, she makes me cry, and my heart goes out to her during her tests. She recently discovered spots in her lungs from a CT scan. Read about her here >
A friend remarked on why I hadn’t responded on the Angelina Jolie “thing” on my blog. I explained that I had a lot of emotions and opinions on the matter and thought I should just keep my mouth shut. That friend disagreed and felt that reasonable people (apparently he thinks I am reasonable, hilarious…) should add their voice to the various crazed responses to a very personal choice of a very famous and beautiful woman.
So I guess, here it is.
Apparently, I have Facebook friends, that have friends, that are a bit crude, that made some joking statements along the lines of “oh no! Brad Pitt lost his boobs.” Which just made me land in a weird place of questioning whether or not my husband lost “his” boobs. *sigh*
People were mostly joking, but it hit me the wrong way. I had to step back a moment and shed a few tears. Just… wow… I had a bilateral mastectomy (which means one of those “home girls” didn’t necessarily have to go, but she did, and I am glad she did even though she gave me soooooo much trouble – apparently it is a “she” now).
I say stupid things, we all say stupid things (I am pretty sure I have bumbled out about 19 different stupid things to a friend who’s father discovered he had prostate cancer and stage 4 colon cancer in the same week… bumble bumble bumble).
I honestly think what Angelina did was pretty reasonable, and I had a deep respect that a woman who makes a living off of her looks (and talents) was willing to make a personal choice like that public.
I would have done the same in Angelina’s shoes . I patiently waited for my own BRCA1 and BRCA2 tests, because the ovaries were going to take a hike if it came up positive, which it didn’t, but not having the results yet, made me still go ahead with a bilateral or as they call Angelina’s surgery a “double”). I don’t regret it, still sad it happened, glad I have had reconstruction, but I am glad they are gone.
Speaking of genetic tests, I am, in fact, going to get the BART test, which is a newer addition to the BRCA1 and BRCA2 testing to help identify if the ovaries could be problematic based on other genes they have identified…(still hoping I can truly enjoy some estrogen in a few years). Even if I have to scrape and save to pay for it.
The dog loves to be under couches (in the new house)
Related to estrogen, my oncologist and my gynecologist discussed and decided that the benefits of the Mirena IUD likely outweighed the small addition of a minor amount of progesterone to my body. So, I have decidedly upgraded that (not many options out there without hormones). So far so good.
I had my quarterly check-up recently (it sort of crept up on me again). All was well, I am not too crazy (this week) and no strange bumpy lumps showing up.
P.S. We are mostly settled in the new house and looooooove it. So much fun having a fresh start and a new beginning. It was an interesting month of me traveling to New York, New Orleans, back for a week to move and then off to San Francisco. Whew!