Entries Tagged as 'square one by Van McCourt'

health & medicalrecipes & food

The food thing

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First, before I delve into a subject about which I receive many questions, I want to say that a cancer diagnosis can make one feel like one’s life is spinning out of control. I’m a problem solver by nature. Spinning out of control is not appealing to me in any way.

I know that for some people, putting all of the eggs into the doctors’ baskets is comfortable and feels right. For myself, I felt that I had some work to do as well. There are measures that one can take to improve one’s health. Duh. We all know we are supposed to be exercising, eating healthfully, not allowing ourselves to get too stressed and of course not smoking and drinking ourselves to death. Well, pre diagnosis I wasn’t eating well, I went through periods of time where I worked out regularly and then I would stop, I was extraordinarily stressed, and about all that I had going for me health-wise was that I have never smoked, did not drink heavily, and was not technically overweight (though I was at the top of my healthy BMI range and had sort of gone past what is appropriate for my narrow frame).

So, you get the diagnosis, you consult with the doctors regarding what they want to do to you, you pick the docs you like best, then what? For me, I had to make the life changes. Not one doctor advised me to do so (and I saw four oncologists and four surgeons). One doctor noticed between visits that I had lost a few pounds and said she thought it was a good idea, but not to go too far. One doctor, who met me after I had lost about 20 pounds, said that people in good shape, like my then self (this was about four months into my lifestyle changes) always have better outcomes, but that she had no real advice for me regarding lifestyle changes or habits to create. I did my own research. I consulted a naturopath MD Oncologist, finally, though I had made all of my changes by the time he was on board. He agreed with all that I had done for myself, and encouraged me to stay on the path.

What had I done? I quit drinking entirely. I started exercising daily. Some days I did yoga and some days the dog got a nice long walk. I was dealing with my faltering thyroid and some energy issues, but these were things I could manage. I began to try to implement some meditation into my life (with this I am still inconsistent at best). I removed myself from some stressful situations. I removed some stressful people. I stopped giving some fucks about some things, maybe kind of a lot of things. I cut out all refined sugar. And at the very start of all the changes, I went back to being a vegetarian.

I was a vegetarian throughout much of my twenties and into my early thirties. I was the kind that still ate cheese and some fish, or the occasional egg. I was also the kind that ate turkey on thanksgiving, even making one myself, once. Turkey is not a favorite of mine. I didn’t crave it for the rest of the year or anything, but in a situation (at a catered work function, for instance) where there weren’t any options, I might have a turkey sandwich. Funnily, most people thought of the sandwich as a vegetarian option. I never understand people who think poultry isn’t meat. (Just as I’m sure there are vegans who don’t understand why I still ate fish and cheese. I knew these things to be “animal products” but, I loved fish and cheese, that’s why!)

During my vegetarian years I essentially had no health issues at all and was thin without ever really dieting. At my height, (5’8″) I’m supposed to fall between 120-169 pounds. In high school I weighed 120, college I was 125ish (I was very active in school as well, dance classes, jogging etc.), and then until about 33 I was anywhere from 125-135. I was the kind of girl who would realize her pants were getting snug and cut back on fries for a couple of weeks. For most of those years I dated vegetarians (not on purpose). I wasn’t exactly eating fruits and veg 24/7, but I ate a lot of dinner salads and a good bit of fruit for snacks. Also, to be fair, I didn’t eat a ton of sugar either, I wasn’t much of a sweets person at the time.

I slowly started to eat more meat products. I discovered frozen margaritas. I started a mean tortilla chip habit. I was stressed at work, and I switched to a job where I was sitting at a desk instead of being on my feet all day. I put on some weight, for sure, and then at 35 I got pregnant. Cue snowball rolling down hill and creating my health avalanche. I never got back on track. If you knew me as a thin person between the ages of 35-45 it was because I was either too stressed to eat or too sick to eat. I had shingles SIX TIMES. 

After my second baby at 40, losing weight seemed to become impossible. Somehow, I didn’t think to go back to how I had eaten before. I tried a myriad of diets. I tried different work outs. I didn’t feel well, my stress level was at my lifetime high, and I was tired all the time. A year before my diagnosis I read The Blue Zones Solutionand thought “this is what I need to get back to!” I did not follow through.

Send in the December 2016 kick in the pants.

First, I read about one hundred articles about sugar. If you like, you can read this one, or that one, or this other one. There are plenty more if you want to go into a google coma. These articles and several of the books that I read also seemed to recommend cutting out refined sugar, so that is why I did that. Then I got back on the vegetarian bandwagon. I remembered from ages back that a vegetarian diet could lower your risk of cancer in the first place, and studies have since come out regarding cancer and meat. Again, google away. I did. I found this, that, this other one, that other one, and more.  If you saw all of those links and went crossed eyed, then click this instead. You’re welcome.

In the end, I just felt like the veg thing was right for me. It worked for me in the past. I know there are plenty of contradictory articles out there. I know that there is some serious research coming out about ketogenic diets and brain cancers (at least that one is a TedTalk). I did all that stuff that I mentioned above, I went vegan for 90 days. I began to consume very little food that comes from a box. Before I started chemo, people ran into me and were in disbelief that I had cancer. I just looked so healthy. I felt fantastic, other than my thyroid issue (which I think I’ve mentioned turned out to be another cancer), and even that situation improved. I wasn’t as tired anymore.

I lost 30 pounds, and I wasn’t even trying to do that. I did not give up all white carbs. I still eat potatoes, rice, and bread, though I don’t eat gobs of those things (I will confess to upping my potato and rice intake during chemo, sometimes it’s just what I feel like I can keep down). More importantly maybe, I added in a ton more fruits and vegetables. Until I got used to eating them I actually counted my servings over the course of the day, with my goal being ten. A quality juicer has helped with that.

When my 90 days of vegan was up I added back in the fish, but left out the dairy. Could I link a bunch of articles about cancer and dairy? Sure, but the cheese just upset my tummy and wasn’t worth the bother. So, I guess I’m officially a pescatarian. When this is all done, no more chemo, final surgeries completed, I’ll still be eating this way. Will I eat turkey on Thanksgiving? Probably. Will I have cake on my birthday? Fuck, yeah. Probably a glass of wine, too. But, I’ll never go back to what I was doing to my body before. If this is all the control I can take over it (besides showing up for chemo and surgery) then this is what I’ll do. I hope that about explains it, because that’s the longest damn blog, ever.

 

ends & oddhealth & medical

Is it over now?

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Have you ever been on that stupid carnival ride that sends you up in the air, in a long row of seats, then bounces you violently back down to the ground? (It’s especially unpleasant for the boobed half of the population). I feel like I’ve been riding that thing for at least a week. I have felt so supported and loved by my family and friends, and so slammed and beaten by chemo. Up an down, again and again. Damn carnie won’t let me off! Lovely and miserable all at once.

The chemicals hit me hard this time. Day one seemed like it was going to be an easier ride, I got a gift from Miami and was smart enough to use it before I was on the floor and desperately needed it. I had some good prep, too, from some great alternative practitioners. Thank You, Mama!! Then day two I was in the depths, feeling underwater and seasick, far worse than the first go round. Right away my hair started to fall out, my mouth began to sting and burn, my heart took off racing like I’ve perpetually just finished running a mile, and everything I tried to eat tasted like a chemistry set. Fruit is the only food that still tastes like itself, even water was impossible until I added lemon. I was so tired, though, I didn’t care about food at all. I ate some plums, drank some juice, and slept.

Day three I shaved my head. I was just tired of the clumps falling out. What’s the big deal about losing your hair? It’s not just that, as a woman, I feel my hair contributes highly to my attractiveness and appeal. It’s not just that, as a redhead, I’m super attached to my identity as the fiery ginger. Those are some serious truths, but when you are diagnosed with cancer, losing your hair is like losing your ability to control your narrative. Was I open about my diagnosis? Maybe more than I should be. Now, though, I may as well be walking around with a scarlet C on my chest. I’ve been out in a beanie and out in a wig, it’s very clear what my deal is either way. I see the faces, and man people cannot hide their expressions. Their questions and their curiosity are written all over their faces. It’s like being the worst kind of famous. I’m Monica Lewinsky. I’m Tonya Harding. I’m the sad train wreck because I can’t alter the perspective of the crowd. I can’t look them in the eyes and say: “I’m fine, I’m going to be OK, this is temporary, don’t put your sad cancer juju on me!” I guess I could say it, but then I’m a train wreck for real, right? Fucking hair.

At the same time, right now, I can afford to pay for things by the miracle that is this go fund me campaign. The new mushroom supplements came in the mail. I was able to have a mid cycle acupuncture treatment today (seriously, the relief it brings is miraculous). I am calling a cleaning company tomorrow to make an appointment and get some help with this house. I have never been the girl who depends upon the kindness of strangers. I’ve been the girl who bristles at the mere mention of possibly needing any help at all. And then one day I just couldn’t keep it together and do it all. My husband says we’re like George Bailey at the end of It’s a Wonderful Life. The money is pouring out on the table in front of the Christmas tree, and we definitely feel the love.

The third treatment (of eight, fucking EIGHT) is next Tuesday. I’m meeting my new oncologist that morning. According to the nurses that I’ve had during my infusions, the AC chemo is hitting me too fast and hard. The second nurse said to ask for an adjustment of my dose, which I plan to do. I hope this oncologist doesn’t suck. I hope he listens. I hope he’s read my damn file before I get there. I need to get through this without completely falling apart. He better be ready to help. Unfortunately, I won’t have my red hair on display to excuse my ginger attitude for me. Hopefully he can handle it.

 

ends & oddhealth & medical

One down, seven to go

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The very first thing that crossed my mind when I got my diagnosis, I am not proud to say, was “shit, I’ve been growing my hair out forever.” That is the first thought that I think we all have when someone says the word chemo, the fact that a person’s hair falls out. Initially, I was hoping that I’d be one of those lucky women who could just have a lumpectomy and some radiation (maybe) and then move on. Then I hoped it would just be the mastectomy without chemo. Once I got used to the idea that the chemo was going to happen (my tumor was more aggressive than first suspected) I just wanted to be done with it already. That didn’t work because I started the revolving door of oncologists. I was informed on May 16th that I needed to start chemo, on June 27th I got my first treatment.

My new hope was that I’d be one of those bitches who says that chemo doesn’t really make them feel bad. Isn’t hope funny? I was told that it would take at least three days for the chemo to get in there and create the dreaded side effects. It took about four hours. I think. I actually have no idea what time it was when I started to vomit. I felt like I was made of granite. I was heavy, so heavy that I couldn’t move my arms and legs. When I was getting the infusion, I could feel it going into me. Especially the red devil, because they actually hand pump it into you with a giant syringe, like you’re a cartoon character getting a shot from a mad scientist. Lying on the floor hours later it felt like the red cement had finally hardened. I’m pretty sure that at some point I just texted my husband (only two rooms away) “help.” My thumbs weighed too much to say what I needed. I only vomited once. All that I will say about that is that a friend of my husband’s brought me something that helped.

Every day since has been a little different and a little better. On day two I barely moved or ate, and the bone marrow bomb on my hip went off, which was super weird. Apparently people weren’t showing up for their day after chemo appointments to get this shot that forces your white blood cell count up. I don’t blame them. The solution was to stick the shot onto the patient with adhesive, and set it like a time bomb to shoot the meds into them at precisely twenty seven hours past infusion. I could feel it pumping into my abdomen. Super freaky, not in the Rick James way. Last night, night four, I slept without taking anything for the nausea. Today is Saturday, and not only have I not spent the entire day sleeping and spitting (I feel like I need to spit a lot, and I’ve never felt the need to spit previously, like ever), but I also walked a few laps around our pool. I’m sure that sounds weird, but I didn’t want to get a block from home and then realize that I had to just sit down and text someone to come carry me back.

I have big plans for the upcoming week. I will spend the holiday feeling grateful that my extended family will make sure my kids have fun (as they are doing today). Then I intend to feel well enough by Wednesday to go wig shopping, and on Friday I hope to make it to physical therapy. Woot woot. Until then I am thanking my lucky stars that my kids know how to cheer me up, my husband feeds me when I can stand it, and I have Netflix, Hulu and HBOGO when nobody is home.

health & medical

Oh, hell no

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Sometimes something seems like a good idea, and then it seems like the worst idea ever.

I’ve been going to Moffitt in Tampa for all my cancer fun. It takes some time to get there and back. Every time I have an appointment I plan for a three hour minimum trip. I call it the three hour tour (if only it would end with me stranded on an island). I’ve been happy with my care there, minus a couple of hiccups and the very long time that it takes to get certain appointments.

That being said, when my oncologist at Moffitt suggested that I didn’t really have to drive there for chemo if I wanted to get the infusions somewhere in St. Pete, that sounded great. I could get my heart checked at Moffitt and get my port put in, then go to the oncologist in St. Pete who had previously been at Moffitt and now had her own practice. This all seemed like winning to me. Cutting my commute by two thirds sounded like a no-brainer.

As soon as I had the port placement scheduled I called the St. Pete office to schedule chemo. It doesn’t work like that, of course. First you have to get a consultation, and I couldn’t get that until a week after my port was put in. The first warning bell went off when the appointment setter said that it might be a week “or so” after the consultation before I could start chemo. This was due to checking with insurance, time it takes for meds to arrive once ordered, and available openings. I should have told her to forget it and I should have just called Moffitt. I want to get this over and done and move on. I did not call Moffitt. I just said: “Ok.” Sigh.

I waited for the consult, which was today. As I pulled up to the “cancer center” I began to feel like this was not the place for me. It’s in a sort of strip mall. When I walked in, every ounce of my intuition screamed “NO!” There were dirty (yes dirty, like scuff marks and smudges) walls. The chairs were older than the office chairs at my kids’ underfunded public school. The carpet was dingy, the “art” was mismatched and faded. Maybe that doesn’t sound so bad. Maybe I sound like I’ve got a case of the first word problems. Maybe I do. In my experience, though, environment is always a reflection of something, and that something is usually not good. I looked at that uncared for space and connected it to the care that would be given to me. Beyond that, as a chemo patient your immune system is a mess. You can get infections or illnesses so easily. It really should be the cleanest joint in town. There was a giant TV, though, constantly playing local news (cheerful as ever), so there’s that.

Being the nice midwestern girl that I am, I waited to see the doctor anyway. I thought that it was possible that she would be wonderful and thorough, and that the back of the office would be tidier. My blood was drawn and the girl did a great job, it was painless. Then I was led into an exam room. It looked the same as the waiting area, though cleaner. The doctor was lovely. Young, great hair, very professional attire that she probably got at Banana Republic or Ann Taylor. She mostly said the right things. She joined the practice 9 months ago. The doctor she joined has been there 25 years. I mentioned the environment of the office in what I think was a light hearted way, and she said that sometimes the crooked pictures on the walls distracted her while she talked with patients. “But,” she reflected, “the important thing is that our infusion area is comfortable, nice recliners.”

It didn’t look comfortable to me. It looked dark. It looked scary.

She introduced me to the nurse in charge of the scary room. The nurse didn’t even look at me. She just took that moment to tell the doctor that she wasn’t feeling well and list her symptoms.

At the desk as I was leaving the receptionist said that they would call me after my drugs had been approved, ordered and delivered. “If you don’t hear from us in a week or maybe a week and a half, give us a call.”

Say what? If I don’t hear from you? Should I be expecting you to just forget about me?

I replied that if I didn’t hear from them in a few days I would be calling, because I just wanted to get past this. I said it with my nice girl smile, and everyone smiled back.

I was already thinking that they wouldn’t need to order anything for me at all, I just had to settle it in my mind. I called someone who works in the oncology field and has been through this herself. We were 100% in sync. No chemo at this place, not for me.

I called Moffitt as soon as I got home. Hopefully I’ll get a call back tomorrow to schedule my chemo there. More three hour tours to come, but at least I know the care is good, the physicians have high standards, and someone does a good job tidying up at night.

ends & oddhealth & medical

Three weeks out

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Three weeks ago today my right breast and 25 of my lymph nodes were removed. Man, did it hurt. It’s getting easier, as far as the pain goes. The strangest part, physically, is that when it doesn’t hurt there is an emptiness. Having air where there used to be this part of me is a strange and sad adjustment to make. It feels ghostly, is that a word? The strangest part, emotionally, is coming to terms with that surgery being just the start.

People talk a lot about fighting. All these war references seem misplaced after a bit. You see it especially with breast cancer. We are all referred to as “warriors” pretty regularly, and we are doing battle with boobs. They make tee shirts that say: “Yes, these are fake. My real ones tried to kill me.” Some women begin to resent and hate their breasts and their bodies when they get breast cancer. I can’t relate.

I have certainly had a love/hate relationship with my body (when I was skinny I wished for curves and then when I wasn’t skinny I wasn’t happy with that either. It wasn’t until my late thirties that I realized I usually looked pretty great and needed to stop caring). It took having cancer to make me feel genuine love for my body. I didn’t get mad at my body. I didn’t feel like an angry warrior. I felt sorry. I have apologized to my self so many times since my diagnosis. I’m so sorry that I didn’t do better and know better. I’m most sorry that I didn’t love my body. I didn’t appreciate it, I insulted it, I didn’t take care of it. I’m not angry with it now. I love it now. I see it now as such a gift. Every day in this body is a gift. Some crap life lesson that we all know is true and never spend two seconds to think about until we are knee deep in the quicksand.

Apologies aren’t getting me anywhere with this body of mine, though. Not so far. And there are so many miles left to go before I rest easy. I’m maybe 20-25% there. I just did this hard thing, and all of these people showed up and fed us and cared and asked and helped. I was so grateful, and then at the same time I wanted them to stop. I wanted to remind everyone that they should maybe come next time instead, when maybe it will be worse. There is so much more to come. I now have two kinds of cancer. About 3% of women get thyroid cancer after they get breast cancer. Most of those 3% get it way after, but I couldn’t wait. I’ve never had any patience. So, this thyroid will probably be removed as well. Those appointments start soon. They want to focus on the breast first, and I have been doing the same (mentally, I mean). I am up to like 6 or 7 doctors now (including naturopath types). Last week I had four appointments in three days and afterward I just crumbled. I had started to feel a little better physically, feel like I was accomplishing something by healing from surgery, and then I realized that my sprint turned into a marathon turned into a triathlon. Is there a kind of race that you run for life?

Life is now the strangest mix of desperately trying to let myself feel joy in every possible moment, being ever diligent about my food and supplements, my doctor’s appointments, treatments, meditation and exercise, and trying to provide my family with the care and love that they need and deserve. I just keep thinking that I want more more more. More of everything. More of this exact life. I don’t think anymore about what I might have done differently. I would take more of exactly this forever.

 

ends & oddhealth & medical

It almost feels like a plan…

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So, where did we leave off? I think I was in Atlanta (sort of). Two good things came out of that trip to Atlanta. Well, one for sure good thing and one possible good thing. The absolutely good thing was that I got to spend three days with a great friend. We caught up on about 10 years worth of news. In the past ten years I think we had seen each other 5 or 6 times, tops. It was pretty great. I’m bad at letting people help me, but she was extraordinarily helpful. Everyone should have someone just like her to accompany them to important third opinions with doctors. Sometimes she heard them say things that I missed, sometimes she reassured me that I heard what I thought I heard, and she took amazing notes that I have already gone back to many times. Thanks JJW, you’re the best.

The other potentially good thing? A lead on a Naturopath MD Oncologist. We’ll see how that turns out in a couple of weeks. The doc is super far away, but does phone consults (for a bajillion dollars, of course). Hopefully it will be worth it.

Other than those two things, that cancer center was not what I hoped. They do have a great Naturopath MD on staff, I liked her a lot. The surgeon that I met with, however, was the least pleasant consultation that I have had yet. By far. Real far. The biggest red flag for me was that the schedulers set me up with an appointment to have a chemo port put in before I ever even met with a doctor. Um, hello, what? And they kept ordering tests for me. The trouble I had with that was that I just wanted to speak with the doctors first. Also, everything there was out of network for my insurance. It was not going to be cheap. Had I done everything they asked, I would have had a port, an EKG, a bone density scan and a CT scan. I’m sure that if I were headed there after having a really bad experience somewhere else, or feeling like I was ready to just jump into treatment, that would have been fine. That’s not where I was, though, mentally. So, the twenty people who worked there and told me that I had “made the right choice” by seeking treatment there, just sounded creepy to me.

Meanwhile, I started to feel not as great as I was feeling the last few months. I came home and started trying to catch up after being gone for four days, and I still haven’t caught up. How many days has it been now? Ha! I haven’t had any energy. It doesn’t help that I’m still coughing from that flu we had. I think the cough made me think I was just still getting over something. Then on this past Tuesday I had a PET scan (ordered by Moffitt oncologist who speaks very quickly but is still my favorite of the three that I auditioned). The good news is that I am not riddled with cancer or anything crazy like that. It is still contained in the one boob and one lymph node. The bad news is the scan showed that there is something wrong with my thyroid. (So, I’m anemic, and my thyroid is out of wack. If you see me at the kid’s school, sleeping on the sidewalk, maybe just scoot me into a spot where I won’t get stepped on.) Endocrinologist, here I come!

The other bad news (at least I’m taking it that way at this point) is that “standard of care” requires that 2/3 of my surrounding lymph nodes have to be removed. All because of that one lymph that went astray. It seems excessive to me, and there are clinical trials going on to determine if that is really necessary, but that doesn’t help me now. Add to that the fact that they won’t build my bionic boob yet because they want to make sure I don’t need radiation first, and I’m a little annoyed with the process at the moment.

I do like to bright side things, though, and I finally have a date for surgery. April 10th. Mark your calendars, cause’ we’re having a raging kegger on the 9th and I will be topless! Gotta get the most use out of these before one is gone! Obviously, all but the surgery date is a joke. As long as my thyroid isn’t holding anything up, that’s the day.

I keep moving the goal line of my expectations, but it hasn’t reached the edge of the cliff yet, so there’s that! Actually, I still feel pretty stinking positive, maybe more than I did a month ago, maybe more than I should. Ha!

ends & oddhealth & medical

There has to be a better way

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Catching up. I’ve fallen behind on my information dissemination. I don’t like to post that I have questions but not answers. I don’t like to call friends and say that I have taken tests without being able to give them results. I’m trying to keep up, though, and there are still some missing results.

When I had that infection and the doctor freaked out and biopsied my lymph node, I literally had three thoughts about it at once. My first thought was that my lymph nodes have felt electric (best way I can describe) for quite a while, so the cancer was probably there already. My second thought was that the node was just swollen because of the infection and this was just an overreaction biopsy that would prove everything is fine. My third thought was that the infection had somehow shoved the cancer up in that node like a bulldozer, but maybe it would ease back down when the infection was gone. All these opposing views are just constantly bouncing around in my head about everything that is going on with me. If you imagined that I overthought things before, well, old me’s got nothin’ on cancer me.

I went on with my life, as I do. I took my antibiotics, started feeling better, met with the plastic surgeon at Moffitt, left feeling confident that he could build me a bionic boob with my (just so tiny) leftover baby belly fat (for the record, he called me skinny), and went home to wait for the scheduler to call. That was on Wednesday the 15th. On Thursday the 16th I felt well for the first time in a week, like truly up an at ’em well. I felt like I had the first part of a plan and it was kind of coming together. (The missing piece was/is still finding a more integrative oncologist who will work with me on alternative or natural therapies in place of or in conjunction with the most targeting chemo for my type of cancer.) I’m not a “let’s throw all the poisons into my system and hope for the best” kind of girl. On Friday the 17th I started to feel like I had caught the house cold (care of daughter and husband), and that night I got a call from the doc that my lymph node came back positive for cancer. He said his team would call me on Monday to schedule a PET scan, and we would go from there. He mentioned starting chemo and postponing surgery. On Monday I called Moffitt and the nurse also said this would postpone surgery. She scheduled me an appointment with their oncologist on March 7th. The freaking wheels at Moffitt turn ever so slooooowly.

Well, the PET scan machine at the radiology lab broke down. I have been so sick this last week and a half. It was like I had the cold that froze time, because I can’t seem to get things going. I have now been scheduled for a scan with that radiologist every day for a week. Every day they call and reschedule for the next day. Yesterday was the last time they did that. Today the folks at CTCA said that when they called to inquire about the results of my PET scan, this broken down place actually told them that I canceled my appointment there myself. I’ve given up on them entirely. Moving on.

As I write this now I am in a lobby called the Peach Outpatient Center at Cancer Treatment Centers of America. It’s in Newnan, Ga. (Big sign in town reads: “Newnan, Ga, City of Homes.” No homes anywhere else, ya’ll! We’ve got all the homes!) I’m about forty-five minutes SW of Atlanta for a third opinion and to see what the oncologists here are like.  I thought it was closer to Atlanta, so that’s a bummer. You have probably seen the commercials for this place. It is definitely a for profit company, but they sell themselves as the more integrative and natural place to cure your cancer. I will be judging them on that, for sure. It’s the whole reason that I came all this way.

First impression is that everyone here is going out of their way to prove to me that they are nice. They keep telling me that I have made the right choice by coming here. People at Moffitt are nice too. My first doctor in St. Pete was also super nice. It’s not like I’m shopping around for the nicest people to treat me. If you are a total bitch with with least invasive, most effective, not so poisonous cancer treatment, one that you know will work on my cancer because you have done the genome test, then you’re my bitch. It is a little sad here, as it is at Moffitt. Big buildings full of sick people are sad, it doesn’t matter how good the buildings smell, or how nice the garden is. Luckily, a very good friend is getting on a plane right now to hang out with me here for three days. Leave it to us to figure out how to turn this into a slumber party. Love that woman.

I know that people are wondering why I haven’t started any surgery yet, or started some kind of chemo yet. I’m not doing nothing. I’m getting healthy in every other possible way. I’m studying my butt off (wishing I’d had an interest in this before, because I’ve learned so much). I’m approaching this in the most thoughtful and measured way possible. I want to live. I mean really live, like get past this and be healthier than before. It might feel to others like I’m dragging my feet or not moving fast enough, but I’m getting it done, I swear.

 

 

ends & oddhealth & medical

So that happened

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Last Wednesday was super stressful. Thursday was terrible and weird. Friday was worse than both. Today is almost normal, so I’ll write about it now. We’re all fortunate I was in too much pain to type on Friday.

I’ve been reading a lot about the mind body connection with breast cancer. I’m a believer. When I find myself getting anxious or stressed out I can feel the blood flowing to the tumor. I’m trying really hard to be mindful of what I am doing to myself physically when I go down my emotional rabbit hole(s). On Wednesday morning I was feeling great, then early in the afternoon I started to stress about something. It was a small thing, but then I picked up kids and they were both at their most intense. This got me really started up. By the time I was trying to handle the stress that showed up in the evening, well, let’s say all my coping strategies were used up. I felt blood rushing to my chest like a tidal wave. Then I started to feel pain. I tried to breathe my way out of it, but felt totally stuck.

Thursday morning I had a (previously scheduled) acupuncture appointment first thing. I thought for sure this would fix me. It did help, but by this time the pain was pretty intense. It was a chilly morning, so I didn’t notice that I just couldn’t get warm. I went home and took a nap. When I woke up, James was home for lunch and I had a fever of 101. Plus pain that felt like the worst mastitis ever possible (if you have not breast fed or have no boobs just take my word for it, this freaking hurts). I texted my go to TCM practitioner at TYM because I had just seen her for the acupuncture. She said she thought that, given the fever, it was an infection (why didn’t that occur to me?) and that if I didn’t want antibiotics she could treat me with herbs, but maybe I should call my boob doctor. I did call, and they put me on the books for 8:30 the next morning.

Friday morning at the doctor was not as I expected it would be. After the idea of infection was been brought up I had thought, “duh.” I figured I’d see the doc, get antibiotics for the week, and go back to my TCM for some probiotics next week (I would also like to say here that I avoid antibiotics like the plague and only use them for true infections. Because I would like them to be of some use to my children. You know, in future land.)

The doc and I chatted, I made boob jokes and she laughed. Then she took a look at the problem. Her whole demeanor changed. She started the ultrasound machine up. She took out her little tape measure. She used the word necrosis. She said she felt that the tumor was spreading (she may have said infiltrating, the oncologist uses this term), that one of my lymph nodes had also blown up, that she was going to do a biopsy right now. She said that I needed to stop thinking about what my plastic surgery options were because this was an emergency. She said I needed to start chemo immediately and have surgery sooner than planned and no reconstruction because there would be lots of radiation. I shook uncontrollably the entire time that she did the biopsy of my lymph node. I cried my eyes out.

In my car, after it was over, I called my husband and my mom. I told them both that I potentially had a very different diagnosis now, and also an appointment on Monday with an Oncologist. Obviously, I spread my worry all around and freaked everyone out. Of course, they want to know, but still.

I texted my TCM and she called me back. We talked about what the doc had said about necrosis. I couldn’t remember if the doc was saying it was necrosis or could be necrosis. Also, there was the fact that I never had time to ask if I should take antibiotics, just to rule out infection. I promised I would call the doctor with my follow up questions. To her credit, the doc responded by calling in the prescription for me. To my TCM’s credit, she sent me a message that she felt sure this was an infection, and told me to send daily updates. That made a huge difference for me, mentally.

By Monday morning my fever was finally gone. The oncologist examined me and agreed that it looked like an infection (at this point it was much less red, painful, and swollen), then he cancelled the order for my chemo. He also went over test results for my concern over rib pain. Everything came back normal. I even convinced him to order a mammaprint for me from my initial biopsy sample. It should tell me with a good bit of accuracy what my chances are for recurrence, and whether chemo will be a good move for me at all, like ever.

When the appointment was over I went to the beach and sat in the sun for 40 minutes, just breathing. Obviously, I need more of this type of thing in my life. Probably some better coping mechanisms as well, while I’m at it.

ends & oddhealth & medical

Some days

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On Thursday last week I got a second opinion. It was actually an identical opinion to the first one, so the only thing second about it was the order. I still have cancer (I wasn’t actually thinking that part would change). The tumor that is the nastiest is still oddly shaped, so taking even just that would mean losing the bottom 1/3, at least, of my right breast. The DCIS toward the center still makes surgeons want to take the whole breast. The tiny benign lumps toward the top still bring no one much joy or solace. Here we are.

I will say that I like this doctor very much. She strikes me as someone who has lived a life knowing that she is always the smartest person in the room. That’s my kind of doctor. Still, perhaps because she’s a woman, she did not dismiss any of my personal efforts at trying to get my health in order. She was not dismissive in any way. She answered all of my questions as though I was at least maybe the second or third smartest person in the room. I left feeling like she should be my surgeon person, which meant, of course, that there would be a wait to have her treat me. Dr. Smartest will not be free tomorrow.

I still felt okay. Actually, I felt a little lighter for the rest of the day. Maybe coming to terms with the very real likelihood that I will be under the knife soon, like it or not, settled something in my mind. I abandoned google and the Facebook cancer groups for two whole days. I spent a day playing activist with my daughter. I’d say, other than thinking about what to eat and drink and take, I barely thought of cancer for those two days.

Then Sunday I was trying to figure out how to get CBD oil (cannabis) and an MM card in Florida (I still don’t know), when I read a post by a woman dealing with bone mets in her ribs. She described the feeling in her ribs as an ache like a deep bruise. Ive been having intermittent pain in my ribs on the right, under the tumor site. At first, I thought I pulled something, but it didn’t really feel like a pull. I feel it more when I reach up high, it aches but doesn’t really pull like a muscle. On Thursday I didn’t bring it up with Dr. Smartest because I hadn’t felt it in days, makes sense that it would return on Saturday. So, now I have to call docs and see if anyone will do a CT scan or something for me.

Back to google we go. Back to the phone. I hate the phone.

Some days I’m just not laughing. I’m just not funny. I can’t go on and do the dishes and the laundry and make my smoothie and think about something else. Some days I’m just sad. Even though I’ve been told that my attitude is important here in Cancerville, some days are too hard. I can’t help but think about the worst possible outcomes. I can’t help but think every word I say to my kids this year should be carefully chosen. I can’t help but think I’m somehow wasting precious, precious time. It’s unreal and it’s painfully real at once. I don’t really know what to do with that today.

 

ends & oddhealth & medical

Everyone on TV is dying of cancer

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Seriously, every time I watch a show or listen to a podcast, someone is either dealing with the impending death themselves or had a parent who died of cancer when they were young. At some point I might have to just give up and do a media blackout. What I really need is a cancer rating website. The show/podcast/movie gets a C if it contains cancer death, an NC if there is no cancer reference, and a FY (fuck, yeah) if the storyline contains a person who beat cancer and then died of old age. That should be a thing.
While I’m at it, I would also like a restaurant that serves all the food that fights cancer, prepared deliciously. Everything will be organic. There will be no plastics in the room anywhere, not even in the seat under your bottom. No dairy, no meat, no sugar, no gluten. There will be wild caught salmon on Fridays only (moderation, people!) And maybe, on late Saturday nights, when there is a band (with no cancer songs- EVER) they will serve baked potatoes. This place will know how to make broccoli and brussels sprouts taste amazing (without a grill in site. Because carcinogens.Duh.) It will make the most wonderful dishes out of berries and also mushrooms, not together obvs. There will also be more than one organic tea option, maybe more than 20. The real kick, though, what will sell the place to all the cancer peeps and their friends, is the incredible fact that flax oil and turmeric is added to everything, BUT YOU WILL NEVER TASTE IT! I have to stop, I’m getting excited, and this place will not exist.
I need that restaurant. Feeding myself is a part time job. Trying to eat all organic and fresh takes time. So much chopping. So much shopping. Lucky for me I’m also doing intermittent fasting. That cuts out a meal in the middle, though crafting a healthy snack can sometimes be just as laborious. Can someone invent a self cleaning juicer? I’m asking for a lot today. Better start playing my cancer card.
My other part time job is studying cancer. Today I was trying to figure out the results of some follow up blood work (while I listened to a guy on Fresh Air talk about losing his mom to cancer). No more accepting the CBC form with the results and then throwing it away because I have no idea what it means. Now, I actually need to know what it means. Today it meant that my Vitamin D level is just barely in the normal range, so keep up the supplements. My iron indicators have gone up a bit, but not enough. Still anemic, wah wah. My B12 and folate are good, though, so it’s definitely the iron thing. What I don’t understand is why my platelet count went down to normal. Still looking into that. Hey- maybe the cancer is gone?! WEEEEEEE! No more blogs. The End.

ends & oddhealth & medical

First update

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So, it turns out that as far as cancer is concerned, I am not a mutant. No genes that make me necessarily predisposed to get this again. Though I will say that the genetic counselor made sure to let me know it is entirely possible that I am a cancer mutant, and that my particular mutation is as yet undiscovered. That’s a buzzkill, counselor! Apparently, if she were me, she would get a double mastectomy and have her ovaries removed as well. I will cling to as many of my lady bits as I can keep until they truly must go! That’s just how I intend to handle this.

In case you are wondering, I have drastically altered my diet and have begun taking supplements- some recommended by my probable soon to be surgeon, and some recommended by the lovely and talented TCM physician at Thank You Mama (to be fair, the surgeon is also lovely). I am also anemic and have to get that figured out and taken care of.

This morning’s appointment with the doctor was all about lumpectomy vs. mastectomy. No final final decision but I have to make it soon. Next up is to make an appointment to get blood work done- must check my iron again and look at my vitamin D levels with my GP. Then a consultation appointment must be made with a plastic surgeon. That is a sentence that I never thought I’d write! Then appointments for a second opinion, even though I do really like my probable lovely surgeon. I think it’s the right thing to do. This Friday I’ll be at Thank You Mama with my full test results to work up a complete game plan for the things that I can control (like what goes into my big ‘ol piehole).

I’m tired, but I’m trying to stay funny. Every once in a while I think about something that I need to teach the husband to do for the kids, just in case. You know, the mom things that I do. The stuff that just gets done and no one will notice until there is no one there to do it. And then I think: “Fuck it, just let him figure it out!” Ha! Just kidding. Then I push it out of my brain and try to go back to focusing on killing cancer, instead of focusing on the chance that it will kill me.

ends & oddhealth & medical

Now, I guess, it’s real

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I’m the type of person who works things out in writing. I make notes of my thoughts. I make lists. Facebook is the best, I swear status updates are like a combination of therapy and a vehicle for my need to feel like I’m entertaining people. If I didn’t write it down, or put it into font, did it happen? Maybe not.

Recently, though, I’ve been struggling with something that I haven’t shared online, for which I’ve taken no notes, for which I’ve just today started my first list of things to do. It’s been going on since September, really, and I’m just making my first list. Pretty easy to look back at the last few months and realize that I didn’t want it to be happening, but it turns out that I totally have cancer.

I did tell just a few people, family and some friends. My mother I told in person, because, you know, she’s my mom. My husband made some phone calls. I did send a few text messages. In regular life, I don’t do phone calls unless it’s an emergency. Texting is my favorite, but this time I would have rather not been communicating at all. I only told these people because I felt the need to explain why I’ve been avoiding everything and everyone.

The thing is, if you ask me how I’m doing, I will cry. If you ask me if my kids know (they don’t), I will cry. If you tell me that you care about me and will help out with whatever I need (I don’t know what I need), I will cry. I don’t want to cry in public.

I can talk about kids, the crummy school system, our new kitten, this hot and dry winter, the new Netflix series (or The Walking Dead, or GOT), TED talks, and podcasts, but not politics (not this year), and not cancer.

Initially, when we told a few people, it was a relief to not have to pretend anymore that everything is swell and that my new business isn’t quite taking off because I’m just moving slowly (I am moving slowly but I’m not taking my time, it’s totally cancer’s fault and apparently I’m also super anemic). Then I started to have to field phone calls and explain things that I don’t yet understand. I started to have to talk about treatments that I haven’t decided on, and listen to people cry as they tried to deal with things themselves. Opinions are beginning to arrive as well. I imagine that will only increase, and dramatically.

So, maybe this is as good a way as any, or even the best way for me, to share this with people. Hopefully they won’t call me crying, or ask me what I need (seriously, I don’t know. I could use a stiff drink but I read that it’s a no-no.) Hopefully they will still invite me out for stuff, and maybe won’t give me “the face” too much (the one that says: “I’m totally thinking sad thoughts about your cancer right now, I wish you would tell me how I can help.”) If you need to make the face, maybe make it toward my back as I walk to the bathroom.

If you want to know how I’m doing, physically, I have invasive ductal carcinoma in my right breast. It is stage 2 at 2.1 centimeters, though the cut off for stage 1 is 2 centimeters and my doctor initially was referring to it as “stage one, but kind of stage 2.” There is apparently no stage 1.5. The cancer is estrogen and progesterone positive, but HER2 negative. I hear that you really want to be HER2 negative, but when I met with an oncologist and made a joke about having “the good breast cancer” he did not laugh. I guess it’s not that good.

If you want to continue to know how I’m doing, physically or otherwise, you can check back here. I’ll need to keep working out my thoughts, and if you feel like you need to cry about it, you can get it over with before we hang out. Ha! (I do want to hang out, it turns out that people who close themselves off socially when they discover they have cancer tend to have a greater risk of death. My kids need me to live, so text me when you have time for tea. Hey! Maybe that’s what I need.)

family & parenting

Two Year Old Conversation

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That title may be misleading. I’m not talking about a conversation that has been going on for two years, but rather the conversation that occurs between myself and my two year old.

Most of the really intricate ones take place in the car or at night just before bed. In the car she asks lots of questions. Right before bed she often tells on herself, her brother, or her father. For instance, today she wanted me to know that daddy said the pizzeria at Great Explorations did not have real pizza that you could eat. She wanted me to say he was wrong, and that she should have been allowed to eat the pizza, which I’m pretty sure is made of felt. Had to side with Daddy on that one. [Read more →]

getting older

My 42nd New Year. (Keep in mind my first year was only 43 days long)

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I’m not going to start this blog with an apology about how rarely I blog. If I were hitting you everyday and apologizing each time, it would not change the fact that I hit you every day, would it? No. So let us just not speak of it at all.

I am one of those people who spends some time reflecting on New Year’s Eve. I don’t want to be. I have tried not to be. No getting around it, I just am. I’m not severe about it. I mean, I’m not kicking myself all night for not being who I thought I would be when I daydreamed in middle school. Much. Mostly, I take a quick inventory and try to motivate myself to go in one direction or another.

The first time I remember really putting any thought into it I was six months past college graduation and waiting tables at Cha Cha Coconuts. [Read more →]

family & parenting

Just one or two hours in that room of one’s own.

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I never wanted anyone to take care of me.

I can’t say that I never needed care, just that I never felt much of a need for it. Maybe I didn’t allow myself a desire for it? Hmm.

In childhood it was available in spurts, the care. My father was absent of the ability, or desire. My mother tried her best, but struggled with depression and her ability to care for herself. Maybe that is saying too much about her, or giving her too little credit. Good thing she doesn’t really understand the internet. [Read more →]

The worst of me

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When you are first dating someone you give them all the best stuff, right? Especially if you really hit it off. Because the people you really hit it off with bring out the best in you.  They make you funnier and sexier, and way more relaxed then you really are.

And that’s fine, right? If that didn’t happen, would anyone date at all? If we all started out with a laundry list of why we were such a mess, who would be interested? Well, except for people who are total masochists, or who think they can change you, or believe you will change for them, or are so crazy that they think you’re normal. We all know how relationships with crazy delusional masochists turn out, right? I couldn’t be the only one. Right? Right.

[Read more →]

Change shows up vs change show downs

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I blogged in December, but I didn’t post it.

The blog was vague. I wanted to talk about something, but I didn’t want to jinx it. So, the blog didn’t really make any sense. It was likely pretty darn uninteresting, as well.

At the time, when I first wrote it, I was pregnant. I was trying to come to terms, in a happy way, with the idea that maybe I could go back to re-planning that whole “married with children” lifestyle. It would be a new version, of course, with my new cake husband, and certainly way better than the Bundy version. Not to mention way better than my previous version, one would hope. [Read more →]

family & parenting

The new century’s single mom (I love my village)

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My mother grew up in a farm town in Illinois. She had an older brother and a younger brother, and her parents had double standards. She could only go so far into the woods, she could only swim so far out into the lake, she had to be home before dark — that kind of thing. Her brothers did as they pleased and she was informed that girls were not allowed the same freedom.

I wonder if that’s why she never complained about raising me alone. And I mean alone, no support system whatsoever, no help from my birth father. I wonder if she just decided to prove to everyone that she was strong, and fully capable of being both parents. She was strong, she was capable, but of course she couldn’t be two people. Neither can I.

[Read more →]

his & hers

How stupid is it to be happy?

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It is a clear indication that you are ridiculously happy when your friends post a link to Wikipedia’s definition of vomit on your facebook status updates. I wasn’t super pleased with the posting of the link itself, but I’m so happy. So happy in fact, that people can poop on my parade all they want. I will just keep smiling. Like the Orbitz gum girl. It’s raining poo, but man is there good stuff to smile about.

Of course, being who I am, and having dealt with what I have been through recently, all this smiling scares me a little. Can I really keep this up?

[Read more →]

his & hers

Why I always kiss on the first date

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Sometimes someone is obvious. You take one look at them, and you know just who they are, what they will be to you, how you will handle them. That’s pretty rare, I think. Mostly we misjudge. Or, we are hopeful, so we lean toward an opinion. We make the call on how we respond based on the outcome we want, not really what we expect. And, sometimes, we just don’t get what we expect at all.

Time and again I have met a guy, thought he was amazing, and then discovered through a kiss that there was no real substantial attraction. Conversely, I have met lots of guys that I wasn’t so sure about, and then have been blown away when they just kiss me into oblivion. This is making me sound like I have done a lot of kissing, which I think maybe I have. But, I also think there is a real lesson here. One that I started learning early on, to which I probably should have paid better attention.

[Read more →]

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