Steroids and garden hoes, not always a good combo

Well I knew it had been a long time since I posted, but when I re-read my last post I realized it has been almost exactly 3 months. Last post I had received my first Butt Shot of Lupron to shut down my ovaries, yesterday was my 2nd Butt Shot (Ben has little sympathy for this since he had rabies shots there as a teen) and these shots are once every 3 months, so there's my TimeHop for yesterday.
I'm also nearly complete with my 12 weeks of Taxol, combined with Herceptin and Perjeta every 3rd week. In the beginning of treatment I had marked July 20th down as my potential end date, if all went as planned Then 3 months in I started trying to count and got myself confused and explained to people that the 27th would, most likely, be my end date. So we planned a vacation in early August, I was settled that I could manage "Fair Week" with Will and his calves and I scheduled things accordingly at work.
Yesterday the nurse says to me and my lovely neighbor, "number 11 done! only one more left!" I must have given her the dirtiest look, and responded "No this is 10, I have 2 more, 1 Taxol and a final of all three."
She went to check the computer and my neighbor, Kathy, said "you can kick her in the shin if she's wrong."
The nurse wasn't wrong, surprise, surprise! Those ladies and myself have had to be on top of things ( my oncologist has had to be reminded of a few things). And my chemo brain is faltering so the burden has been on them lately.
Emotionally and physically the Taxol has been far, far, far easier. Hence the combination of warm weather and more energy (excessive energy at times with the steroids) got me up out of my recliner playing in the garden instead of blogging.
The emotional ups and downs of each cycle have been nothing like the depressed days of the AC treatments. That's not to say there aren't mental struggles during Taxol ( I have been known to cry because my brain feels so weak)... the steroids, and I think the Herceptin/Perjeta have assisted with some harder emotional days, for me or those around me. Think raging overweight bald woman yelling at you with a garden hoe in her hands, fun huh?
The Lupron amongst other things has sent me essentially into menopause without the glorious peri-menopause for months and months. I get night sweats and hot flashes, mostly 7-14 days post Herceptin/Perjeta, and I will get to do those cancer fighting drugs for 40 more weeks after I complete surgery and radiation. Menopause is a different stage of life than I thought I would be at, and Ben wasn't thinking he would be married to a 35 year old menopausal woman either, but we were not looking to have more babies, so we just have to adjust.
Taxol has brought on diarrhea (I hate trying to spell that word, and I have to all the time with calf records and doctors intake forms.) So I was able to cancel a referral to the Butt Doctor for the anal fissures (OMG!!! sleepless nights) from the AC constipation/diarrhea pendulum. Taxol has also brought neuropathy in my hands feet and sometimes my tongue/face. Decadron (steroid) has made me full of rage as it wears off and sleepless and manic for 48 hours after treatment. I have been reading a book called The Bright Hour and the woman lists all the modifications she has made to her yard while on the steroids: planted a vegetable garden, hydrangeas, rhododendron, rose bush, potted geraniums...the list goes on, and I'll be damned if I couldn't check off nearly everything she listed, plus the husband who, while trying to remain appreciative of the work, is trying to encourage his wife to enjoy the new rocking chair as well. Add that to reorganizing closets, cupboards and weeding out my dresser and you end up with a husband who says he prefers the sickly tired wife over the manic one.
I could hack this Taxol gig for a while if my cell counts would cooperate, they are nearing the bad zone where I could be forced to skip a treatment and allow them to rebound. But those AC cycles are a little like childbirth, once you get past it you glow in the fact that you scaled the mountain, but when you seriously reflect, that mountain was damn hard and painful. I could write an entire blog on the similarities between AC chemo and pregnancy, one you end with a bundle of joy, the other you face the loss of some pretty substantial feminine traits and appendages.
I am currently facing the decision of lumpectomy vs mastectomy, a choice I hadn't previously thought I would have. More than likely I would lose my nipple either way, and if I choose a mastectomy I am 90% sure I would opt for a double. An appointment for an ultrasound and mammogram, plus appointment with my chosen surgeon, Dr. Anne (she is truly awesome in her level of patient care and her patient interaction style is exactly what I received at Sloan Kettering,) recently had to be canceled due to problems with their computer system. I am rescheduled to do that in a couple of weeks, so after that I should have all the information to accurately know if a lumpectomy is an option and when my scheduled surgery will be (I am supposed to take 3-4 weeks off after chemo before my body can safely go through surgery) later in August. After surgery I could face weeks of radiation and then go back to my Herceptin/Perjeta regimen every 3 weeks.
The tumor physically feels vastly different and much harder to find, both by my evaluation and the Drs' palpation. And my 3 month echo cardiogram showed no decreased heart function from these potentially dangerous drugs.

Some of my reflections, the silver lining of cancer I guess; you will find friends or reconnect with friends that will fill your heart, the love from your community is breathtaking (thanks nurse Sam for recommending a book that has expanded my view of what community really means,) faith in myself, my beliefs and my intuition is invaluable, trying to be present and in the moment to enjoy more simple stuff is increasingly important. I'm nowhere done with the journey, and the mental burdens may become more difficult as I come to the end of the "tasks" of treatment and face years of scans, therefore I will only learn more about myself and what the silver linings are as I have more time to reflect. I am increasingly interested in doing some sort of retreat for meditation and spiritual reflection, yes I am a spiritual person, despite what some think, but I have gained a true trust in my own beliefs through all of this and continue to evaluate how they align with some of the oldest religions. Some deep stuff here... but thanks to some extra hands on deck the manure pond in our backyard has been emptying rather quickly lately!

Thanks to all of you! For the comments, the meals, the child care, sharing your kids to play with mine or sharing your teen to keep life in our house running, baking goodies to sell for raising money for the American Cancer Society for our Team Udders, drinking soda/beer and more beer for saving Tabs for Tatas to help raise money for Traci's Hope, sitting with me for hours to share cancer talk in our newly formed Ladies Cancer group in Owego (message me if you or someone you know might be interested), sending me texts and emails to keep me sane and encourage me. I have love to give to each and every one of you and I accept your love with open arms!! Just be careful of the hoe or pitch fork depending on the day.

Here's our ACS site if you want to help Team Udders

Bring your can tabs or $$ to Home Central to help Traci's Hope or sign up for Kayaking for a Kure to help both Traci's Hope and my dear friend and cancer buddy Jocelyn Kline!!

And I didn't get many takers(only one really) on using the meal planning site, but we will probably need some help once I have surgery and radiation.

This weekend I am skipping town to have a ladies weekend and visit Longwood Gardens...hip, hip hooray!!

Strawberry water and a flooded brain

I have heard several times "when are you going to post again?"
It's complicated!
Some days I have no energy, and simultaneously no brain power. Other days I have some energy and I try to get back on track with normal activities. And still other days I am scrambling to try to play catch-up and get life caught up before the next treatment.
This is the pattern I am noticing
Treatment day(Friday) - a few hours of functioning afterward but I begin to feel "green" and later get shaky and gross
Day 2 - feel somewhat cruddy, but can do simple household stuff. I can eat if I stay on top of my nausea meds
Day 3 - sleep a lot, feel gross, everything wears me out and I can't focus on anything
Day 4 - feel a little like I was run over by a truck, but once I get moving I can function for short periods of time, brain is still fuzzy
Day 5 - Feel more normal, but have to keep it low-key or I pay for it in the days to come
Day 6 - Feel pretty normal with lingering food aversions, but have to keep it low-key or I pay for it in the days to come
Day 7 thru 10 - Fairly normal but same as above (this normalcy is tricky because this is when my cell counts are the lowest, so even though I feel ok, I am highly susceptible to infection so I should be laying low)
Day 11 thru 13 - Feel really normal other than the odd symptoms

So I have checked treatment #2 and #3 off the list, and I am grateful that #4 will be my last of the AC chemo with Neulasta. I am also worried about the second phase of treatment, Taxol weekly plus hormone blockers every three weeks. I keep hearing the T is less harsh than the AC.
Great! But weekly? This throws my day by day knowledge about how to accommodate the chemo totally out the window, and this is 12 straight weeks!!
Anyhow, not to be too doom and gloom, I will be excited to be done with AC, but I'm hesitant to make grand plans for the next few months while I see what is in store.
I did get a large needle in my left buttock last week and it was surprisingly easy. My most recent treatment was in Binghamton with Dr. Kloss and he recommended a shot of Lupron to shut my ovaries down, essentially putting me into menopause. Hence the shot in the butt.
I am happy to be doing treatment in Binghamton, so far the office-patient communication has been better already. And Dr. Kloss has been friendly, but treated me like I was intelligent enough to hear the reasons behind the treatments, instead of treating me like I don't need to know the "why" behind different decisions. He has recommended Dr. Janet Muhich as a local breast surgeon who he has great confidence in and I have heard other good reviews of her as well, so we may consider working with her. I have also been told great things about Dr. Anne, another local surgeon who deals exclusively with breasts, but then others have said that the only part of their treatment they did in NYC was the surgery. I have research and some meet and greets (weird visual of boobs shaking hands with doctors) to do!

Here's my list of things you ought to know before you undergo chemo:

• Don't think you will get caught up on reading and paperwork - your brain will not want to focus and group discussions will become frustrating because there will be many days you can't follow the conversation 
• Buy a humidifier to put next to your bed. Your sinuses will hurt, a lot. (And you will forever feel like you need to pick boogers)
• Limit the amount of "Anti-Cancer" health advice you try to absorb. It has the potential to make you more depressed when you feel like you can't juggle all the balls while you are fending of nausea, fatigue and overall blah. I love learning about alternative medicine and food as the source of health, but I struggle with balancing the do-able aspects with those approaches, vs the unattainable ultra-granola lifestyle I don't have the time to achieve. Yes, I can make my own yogurt, but it takes time and then you get into...my own bread, my own shampoo, my own chicken nuggets, my own toothpaste, my own toilet paper, my own astragalus extract. I have a Naturopath that is thankfully very down to earth and will tell you things like "eat saltines all day if you can't stomach anything else and then we will use greens powder when you can" or "go ahead and use Zantac to stop the heartburn and then use the natural stuff to try to keep it from coming back."
• Stock up on bowel movement supplies. You will need something, whether it's Imodium, stool softener, prune juice, hemorrhoid cream, tucks wipes, homemade suppositories (I haven't tried but there are recipes on the internet), or a sitz bath. I am not stranger to intestinal discomfort, but surprisingly I experienced very little intestinal discomfort. On the other hand, I have spent nights awake with tears in my eyes because of the effects of the chemo on my digestive health, I'll leave it at that. If you think hemorrhoids, diarrhea and constipation are the only types of bowel issues, you are horribly mistaken!!
• Find something to drink besides plain water, because you probably won't feel like drinking water. But you must! Ben can convince me to drink seltzer and orange juice, but I shouldn't be drinking juice that much, so I've been boiling strawberries(my low cell counts mean I'm not supposed to have fruit or veggies that are raw or don't have a peel) and adding a dash of lemon or lime and then serving over ice. I'm still not excited to drink as much as I'm supposed to, but it's helping. 
• Also think about using a big jug so you, or someone else, can monitor how much you are truly drinking in a day.
• The mental agony of marking off treatments on the calendar and thinking about the months to come will often be more troubling than the days of nausea and fatigue. 
• Indigestion is inevitable
• Find a spouse that doesn't come in the house smelling like urea, sour milk or cat piss. Sensitivity to smells is far worse than when I was pregnant, and I was really sensitive to smells during my pregnancies. I can't even tolerate foods that rode in the car with a bar of soap because I feel like everything tastes like soap.
• You can never have too many hats. I'm not a hat person, but I haven't quite made the leap to going to town with my bald head. A variety of hats/scarves will help you feel semi-presentable when you have to leave home. I even struggle wandering around the farm without a hat because I feel like it's too shocking for our employees or whatever milk truck driver, mailman or salesperson pulls in our driveway. 
• Hair loss may start in a variety of areas, just sayin'
• Buy some extra thermometers. I have had some feverish days, but yesterday I needed to check my temp after going from hot to cold to hot(a low fever can be serious when you have low cell counts.) The thermometer was dead. I didn't feel like scouring the house for another thermometer and the one Ben was offering from the barn wasn't going anywhere near my mouth. Eventually I hiked upstairs and found our second thermometer and ended up have a very mild elevated temp that by babying all night and limiting activity today I think I have beat. 

I feel like this post is a little depressing, but it really isn't meant to be. I have struggled mentally on and off with each chemo cycle, but overall I think spirits have been high. Some of the depressed nature of the post might be because I have been told things like "all the ladies in my church are reading your blog," that stifles my dark humor a little. Not the "church ladies" bit, but the varied audience of potential strangers makes me a little uncomfortable.

We said goodbye to Grandma Joyce last week and she shared that dark, sometimes biting humor, that my Mom's family is so fond of. My Aunt Stacie shared some very special thoughts during the funeral and she had Ben laughing/crying so hard he was snorting. It had something to do with ashes in a cool whip container, marrying anti-social people and hoarding twist ties. Anyhow, Grandma is at peace and can release the decades of struggles that she carried in private. My Mom is convinced that my Grandmother had something to do with a very loud cardinal screeching outside Punks Bar on Sunday morning. 

We have had so much help with the kids, food, errands and work. Thank you to everyone! And after many requests from friends and family, here is the meal planning site so we don't end up with quite so much in the fridge all at once. Here's the link 

click here

and the password is Quinn

My face is getting flush again and all the strawberry water is making me a little uncomfortable, so farewell for now!

Treatment #1 - to vomit or not to vomit?

Man I would have liked to vomit. That's what I kept thinking, but in reality I think that would have been a downhill spiral.
The infusion itself was rather painless. They gave me lidocaine cream to put on my port site since it had been put in only two days prior. Of course I forgot to put it on the prescribed 40 minutes before, so as we are getting off the highway in Syracuse Ben was leaning across the car to try and help me peel my port dressing off (some seriously sticky saran wrap stuff) while I am trying to navigate traffic.
We gave up!
In the parking garage I applied the lidocaine and a new layer of saran wrap over it, actually press and seal wrap because that's what I had. Press and Seal doesn't really stick to your body as well as it does glass bowls, if you were wondering.

We joined the troops of chemo patients waiting outside the infusion room. These are some tough peeps! But Ben made sure to note that I was the youngest, by far, in the waiting room. When he said that all I could think of was the Pediatric Oncology department upstairs and how I am so grateful this is me, not my child.

The nurse quickly realized I had put the lidocaine over the incision site, not really the port site, as that's slightly higher than the incision. In the OR they taped my boob to my belly to get the skin to sit more like it would when I sit upright...there's some serious gravity there. The port procedure had a lot of pomp and circumstance, but was actually really easy.
So the nurse reapplied lidocaine and let it set in while she got things ready. Accessing the port was slightly painful, the port incision is still painful today, a week later, but the access to the port was just a strong poke and it was all over. That poke was much better than the twisting and poking and prodding that I've experienced with some blood draws and IV's.
The infusion was simple, but awful to see (think monster blood getting injected into you.) All the while I kept telling myself that I should be thinking happy thoughts about how this goo is going to kill the cancer, but that train of thought was hard to keep.
They did the Adriamycin first and the nurse has to sit and administer that by hand, no biggie. Then the Cytoxan which can cause nasal congestion/pain. They slow down the Cytoxan to try to eliminate that sinus discomfort. It did cause some burning, but nothing horrible.
We left after 2 1/2 -3 hours and were on our way home, feeling good.
Where do we stop for lunch?
My co-worker and others had warned me that what I ate after might become my least favorite food.
We chose the old fashioned A&W in Cortland...I don't think I will ever eat there again, or any A&W for that matter.
I felt fine eating, we stopped at Walmart to get a bed rail for converting Quinn's crib into a big girl bed so I won't have to pick her up out of it anymore.
Got home, felt a little tired, kids came home, started feeling a little yucky, kids left with Grammy for the night, sat and talked with my parents, felt a little sicker, they left, Ben came home, I started tapping my hands under my 3 blankets to alleviate the desire to vomit.
Cold and need to vomit, was all I could think. Ben ate food the neighbor had brought over and I covered my face to avoid the smell.
Ben, or Nurse Ratchet as I like to call him, called the nurse hotline because I had taken Zofran, but couldn't remember the order in which I was supposed to take the other anti-nausea/anti-anxiety meds. The Zofran wasn't doing a damn thing is what I kept thinking. So sequentially I took 2 more meds throughout the evening and successfully avoided throwing up...Yay...I think.
Saturday morning we started the same med routine and I was actually able to stop the tapping and ticks that had been helping me stay sane the night before. I was actually able to take a bite here and there and keep drinking the water that every breast cancer survivor has harped on me to drink, no matter how horrible it seemed.
I battled chills some that day until early afternoon when my face got red hot and like clockwork my delayed release steroid beeped on my arm and began releasing. I thought, oh good the steroid will help me eat again.
Not so much! Ben would offer one food and I would think "maybe" and then one bite and I was over it, take it away, don't make me look at it, think about it or smell it! But I kept drinking and by Sunday Ben realized I liked "screwdrivers" or his version anyway, seltzer and orange juice (Dandy minimart oj works, but it's not as tolerable) and he could peel an orange and get me to eat it.
Ben successfully attended a preschool gymnastics birthday party where cupcakes with cotton candy on top were served on Saturday, and he escorted Will to 4-H on Sunday where they successfully created a string art project that they are both very proud of. I slept nearly all day Sunday.
Monday morning was still a little yucky, but my energy was better and by mid-morning I started eating scrambled eggs, success!
The rest of the week has been on the uphill swing, other then the mental/emotional toll of thinking about what the future treatments will be like.
We have enjoyed our two snow days and the love keeps pouring in from friends I haven't connected with in a long time and strangers that have been introduced into my life to help me cope with this diagnosis. I've spent an hour on the phone in the last two days with a woman I've never met, talking about life and cancer, boob surgeries and telling our kids about cancer without scaring them to death. I don't talk on the phone much so that's an accomplishment. And numerous messages checking in on me from other BC patients, some strangers and some not.
In the meantime I've also talked with a Netflix producer about filming on our farm, I've contemplated it long and hard, but decided to decline. Weird!
And this afternoon my Grandmother (Joyce) was diagnosed with Stage 4 Lung Cancer....PLEASE no sympathy for me regarding this. She was hospitalized Monday for swelling in her legs and more confusion than normal. After a CT Scan they know she has cancer and believe it to be in her liver and lungs. She is in her mid-eighties, has multiple health problems, but has been adamant about living on her own. Her decades of nursing in long-term care left her with the feeling of never wanting to experience that herself. Unfortunately my Mom and her siblings will carry the added weight of coping with decisions regarding her care.
I love Grandma Joyce, but we have also seen a downward spiral in her quality of life in the last 5-10 years and I am struggling with the mental clarity to understand how I feel about this. It's only been one or two hours of knowing this diagnosis...
AGAIN PLEASE keep the sympathy on the down low, pray in your home, send me a smiley face text once in a while, but let's not talk about Grandma for a little bit ...

One Suburban, Two Suburban, Three Suburban, Four... No More! 3/6/17

NYC happens to be the land of Suburbans, or just over-sized SUV's period, but mainly suburbans. Last week we traveled to Memorial Sloan Kettering in NYC to get a second opinion.
She thinks I have breast cancer. Can you believe it???
Well that's not really what we went for, we actually went to give Ben the experience of tall buildings, constant horn beeping and the land of black apparel (seriously do these people own anything with color?)
But we had a good experience, Ben actually enjoyed the city for the few short hours we were there (I'm not a fan.) My dear aunt Stacie graciously chauffeured us for the entire day and treated us like the middle school kids she usually chaperones for trips to NYC.
The waiting room of Sloan was a little unnerving at first. I had mentally prepared myself for a room full of cancer patients, but Ben was a little caught off guard. Stacie, who sat in the waiting room while we visited with the doctor, actually found the room inspiring as she listened to the women around her sharing their stories with each other. Should you stumble in off the street, the room might give you pause as you take in the multitude of women with canes, no hair and worried companions. But Stacie is right, they were chatting about their stories, sharing experiences, feeling a bond. That's not to say that I didn't have nightmares that left me unable to sleep, but that's just my freakish mind, not from a lack of warmth and beauty in that room.
I have been brought into a fold of women I barely knew existed before now, women who offer to show you scars or missing nipples, women who offer to ship you their hair, women who recommend doctors, books, tricks and tips. It's an incredibly generous and welcoming group.And the love from those around me, near and far, is still very overwhelming.
Suburbans...Ben announced every stinking one he saw, and he probably saw 30-40 in one freaking day. You might see 5 in a week in our neck of the woods, but down there we saw one every other minute. He was hyper-aware because I picked up my Honda the night before and we are committed to trading the Suburban in on a pick-up, his heart is breaking. I don't miss it, but that man loves that car.

Anyhow, my prognosis. Dr. Sanford from Sloan Kettering recommended a different course of chemo. The regimen she recommended is more harsh, but she feels is more successful for my Estrogen +, Progesterone + and HER2 + (Human Epidermal Growth Factor Receptor 2) Invasive Ductal Carcinoma. This treatment will consist of 4 rounds of AC chemo (Adriamycin and Cytoxan) once every 2 weeks (so 8 weeks total for the math flunkies) plus a steroid the day after the AC in a patch so I don't have to travel two days in a row. Then 12 weeks of weekly injections of either T (Taxol) or H (Herceptin) and P (Perjeta) or a combination thereof. Then a break of a few weeks, surgery, and back to the THP regimen for 40 more weeks. Plus, most likely, radiation sometime after surgery.
This regimen is different than the other prescribed plan primarily because of the AC, a harsher combination but one that Dr. Sanford says she feels comfortable recommending for someone my age vs a much older woman. Dr. Siva expressed concern about the implications for my heart, Adriamycin has high cardiotoxicity and can cause leukemia or other issues, but she is willing to provide this treatment.
Dr. Sanford recommended finding an oncologist closer to home since the second portion, the THP, will be weekly and she believes the less upheaval in my life from time away from home, the less stress and the better the response. T (Taxol) is another chemo drug, but Herceptin and Perjeta are actually hormonal treatments and a recent trial called APHINITY has shown that one year of H&P is superior, but they still need to wait for the FDA and then insurance companies to follow suit and allow this regimen. Both doctors admit that there are no head to head studies on the AC-THP regimen vs the TCHP plan that was originally prescribed.
After some thought and some tears and some nightmares, I have decided on the AC-THP, judge away, but Dr. Sanford made me confident with her confidence in this. She drew me pictures and mapped out the plan in a way that made us totally confident, Ben may have even shed some happy tears on his way back out into that waiting room.
So Friday I did the CT Scan, Bone scan and Echo. AND I nearly shit my pants in Wegmans!
I had planned on going to Wegmans after the tests to get some food for a gathering of crazy little boys at my house on Saturday, but I wasn't aware how bad the Barium Sulfate would a) taste b) affect my digestive system. I made it to the restrooms, multiple times, but it was not an enjoyable shopping trip.
Again, at Lourdes there were inspiring women in the waiting room! They forewarned me about the upset stomach and the disgusting drink. I think I should start a rating system for hospital gowns/robes/oversized dickeys. Lourdes would get a 4.5 out of 5. The Nueman Center at Upstate would get a 7 out of 5 for the plush terrycloth robes they provided, but that was only in the imaging offices. Someplace else had lovely plush robes too, but I can't seem to remember where. Cortland Mammo department gave me an oversized napkin with a head-hole and snaps, but it didn't even come down to my bellybutton, nor am I self-aware enough to know not to wave my arms around as I talk.

Sunday we celebrated Ben's 35th Birthday - woot woot!!

Today, Monday, I went back to Upstate, not sure of whether we would start chemo today or not. Dr. Siva offered to start the THP portion of the plan today and then do the AC after the 12 weeks, flip-flopping the plan, or start the AC after I get my port because it is too harsh to do without the port. I decided to wait and do the AC on Friday, the idea being that we get the AC done first, while I am feeling my strongest, and hit the hopefully easier THP afterward.
My echo cardiogram was good, the bone scan was good and the ct only showed one nodule in my lungs that is less than half a centimeter and could very well not be cancerous, plus the obvious growth in my breast (MRI measured 6.4 cm but they tend to overestimate) and 4 suspect axillary lymph nodes (armpit). Dr. Siva is also trying to coordinate the transfer of my care to Broome Oncology, several people have recommended doctors in that practice, who work out of both Lourdes and UHS. Thanks for all the input!!
My cancer is called Stage III by Dr. Siva, I think based on the MRI sizing of the tumor, and IIB by Dr. Sanford, because she prefers the ultrasound sizing. Either way, it is what it is and the chemo is going to blast that crap right out of there.

So the remainder of this week will bring - Colton's Birthday, Port on Wednesday at Wilson, a trip to the accountant on Thursday, groceries tomorrow so I don't have to shop post-chemo for a while, and chemo Friday after I drop off records at the other accountant. Chemo here we come, ready or not!! Accountant here we come, whether I'm ready or not!!

If you can't sleep - try counting suburbans!

SPACE Cadet 3/1/17

We're off to NYC tomorrow to get a second opinion at Memorial Sloan Kettering... I might as well be travelling to Mars. My mind feels like it's a million miles away from my body.
Whirlwind is an understatement, yet it feels like the things that ought to have happened two weeks ago can't come soon enough. Ben, maybe more so than I, is counting down the days to chemo, ready to let the drugs do their work.
I have relished these couple of weeks to check a million things off the to-do list that have been weighing on my mind, plus fit in the various doctors appointments and multiple daily phone calls with 4 hospitals and multiple providers at those institutions. And we picked up my new to me car tonight. I've actually been pretty manic and that's a little scary because I am waiting for the manic to come to a crashing halt.

The port issues were a pain in the butt and Ben wishes I had gotten more angry and heated concerning this, but it's not delaying treatment, and human error is human error and as much as I am frustrated, the real anger is from the entire situation, not so much the smaller hiccups.
So Friday will  be a CT scan, Bone scan and Echo cardiogram at Lourdes. Monday will still be my first chemo treatment in Syracuse, unless something drastic happens tomorrow in NYC. The port is rescheduled for Wednesday at Wilson Hospital.

Will turned 8 last Sunday, Ben turns (drum roll)...35 this Sunday and Colton turns 5 Wednesday. I'm mad that I'm a little distracted. A LOT distracted!
Still feeling overwhelmed by the love and support that has been flowing in, cards, packages, food, well-wishes, inspiring blog articles and even some wigs ;)
 I'm wearing one of two pairs of socks I got in the mail, they have cute yellow flowers and say "Kick this day in its sunshiny ass".

My goal is to cut out sugar, it feeds cancer, or at least that's what I hear/read/watch. I love a good green smoothie, but cutting out sugar and simple starches is hard and sticking to that when we are eating out more than we ever have before makes it nearly impossible, but I'M TRYING! No I'm not beating myself up about it, but it feels good to try to fight back in my own way.
I've read some of Jennifer Griffin's story about her battle with Breast Cancer and it's very inspiring and fits into some of my pre-existing nutritional knowledge about eliminating the foods that cause inflammation. So kale soup here I come!! If you've got any recipes send them my way, please!

Good news: BRCA genetic testing came back negative, so this means I am not carrying the genetic marker that predisposes myself or my offspring to a significantly increased chance of having breast, ovarian or several other types of cancer. YAY!!

Free Breast Exams - 2/18/17

Gotta love him, Ben that is. He asked that I put his phone number on the blog in case anyone needs a free breast exam.
Thoughtful!
We had another long day in Syracuse yesterday. The MRI was at 6:45 a.m. so we had to be there by 6:30, which meant leaving our house around 4:45 a.m., fun! But the roads were far better than the other two trips. I slathered on some coconut oil/Shea butter cream to help lube me into the MRI tube, Ben checked on a new calf and we were on the road.
The MRI was intense! The damn thing looked hardly any bigger than the last one, but the apparatus I laid on was not so high off the table, so I FIT! There's a lot of snapping, whirring, whatever the other noises were and my muscles started twitching along to the beat. They give you little breaks, which is appreciated, but you're still stuck in the rabbit hole. The music was not ideal, I guess I should have chosen a different genre, but I closed my eyes and TRIED to think about different things.
Somehow the woman who put me in the machine was not the woman who took me out 20 minutes later, which was a little startling. Plus the woman gave me pants that were far too big (my shoulders and belly are big lady, but these pants just wouldn't stay up. So I snatched a different pair before they put me in.
There was some random dude in a carhart and muck boots with earphones in standing outside the MRI room when they took me in. He was talking to a couple of staff members and the nurse who took me in gave everyone a dirty look and I think he scrammed, hopefully.
We went a few doors down to the Numann Center after and waited a long time to see if the Radiologist wanted us to come do any more ultrasound or biopsies. Tammy (the pit bull NP) kept checking on us and they ended up having me do another mammogram. I am enjoying the terrycloth robes vs the slightly oversized napkin I had to wear in Cortland.
Then I went to see Dr. Albert again...
The biopsy came back positive for cancer in 2 lymph nodes, but the original biopsy came back positive for a 3rd hormone receptor, HER2. While the lymph node diagnosis isn't good, the HER2 diagnosis is a mixed bag, bad in that it is usually more aggressive, but good in that in the last few years they have found treatments that it is usually very receptive to.
Dr. Albert says that at this point we are probably calling it a Stage 3, based on the size of the mass and that there are at least 2 lymph nodes affected. BUT he's still awesome and upbeat. He also noted that we would probably be doing radiation, but that recent studies, and an ongoing trial I would qualify for, show that I would probably not need a radical mastectomy, meaning I could keep my lymph nodes.
Why keep affected lymph nodes?
Lymphodema is a nasty disease caused by removal of lymph nodes, which results in swelling and pain in the arm which can make daily tasks very difficult.
That's still a decision to be made.
Dr Albert also had already made arrangements with Dr. Zeva (a longer name but that's what she goes by) for me to see her at the Cancer Center that afternoon. Dr. Zeva is the Breast Cancer Program Medical Oncologist.
We grabbed lunch, I felt like a slob eating at a decent restaurant because I had dressed for a 6:30 am MRI, not a hot date in the city. And remember that coconut oil I slathered on? I think I must have touched my hair after I dried it and my hair was looking like I hadn't showered in 3 days.
Anyhow we went to the swanky Breast Cancer offices and met with Dr. Zeva, and a Radiation Oncologist, Dr. Shapiro, and residents for both doctors. So I got examined 4 times, yay!
Game plan: 1 round of chemo every 3 weeks for 6 rounds, then surgery.
Dr. Shapiro was recommending a study where they don't do radiation on half the patients after surgery because they think it may be unnecessary if the cancer responds well to chemo. I have consulted my familial medical expert and he has been calling friends in faraway places for advice. A world-renowned Radiation Oncologist is telling him, NO, do the radiation, I'm too young to take that risk, and I was questioning that as well.
I have to have a PET scan (my insurance is already throwing a fit about this), and Echo Cardiogram and get the port put in before my next appointment on March 6th to start Chemo.
I am now considering trading in my BUS (aka suburban) on a smaller SUV for my frequent trips to Syracuse, and even more locally for radiation. Plus we would hope to upgrade Ben's truck at the same time to allow more flexibility for transporting kids. If you know anyone who can do a good two-fer (how do you write that?) let me know!
Still trying to stay upbeat, even as the news is a little more intense. Please help me stay upbeat! The more boob jokes the better!

Linebacker Shoulders - 2/16/17

The weather was SLIGHTLY better for another trek to Syracuse this morning. BUT my MRI was not a success. We did a "dry run" of the MRI at Upstate's Community Hospital and it was not at all successful.
If you've had a breast MRI before you might be able to follow along, if not you need to use some imagination...
This is an old MRI. It was yellowed plastic and the tube your body goes in is tiny and it looked like there was some loose seam tape dangling, but the gentleman, Mike, helping me was extremely kind. There is a tilted chest plate with 2 holes for your boobies to dangle through, a face pad for you to rest your head on and the chest plate is elevated about 6-8" off the table that slides your body into the tube.
We attempted our first "dry run," as Mike called it, with my gown still on and he slowly slid me into the tube, I thought 'this is fairly comfortable', similar to a massage table, except for the boob holes (but massage tables might want to think about incorporating those because it was more comfortable). Then my shoulder hit the top of the tube...
Mike stopped, slid me back out and apologized profusely for the machine, saying "this happens all the time."
Dude, I know these machines are expensive, and I'm an overweight linebacker, but I think it's time for an upgrade!
Mike said we were going to try it one more time, all the while some random employee stood silently smiling a little too much with an "I told you so" look on her face. I was told to take a few deep breaths and reach my hands further over my head...this time the top of my shoulder just brushed, but by my shoulder blade I was wedging into the tube.
Back that lady out before she gets stuck like Winnie the Pooh going in and out of Rabbit's burrow!
Anyhow, lots of apologies later and phone calls to other offices and the Nurse Practitioner at the Numann Center, who is an intense hoot of a lady, promised me a spot back at their office complex first thing (earlier than first thing) in the morning with a different MRI, plus the ability to meet with the radiologist to do any further tests right then and there.
Mike was so nice, he led us back through the hospital to the Wellspring Breast Center where I would have the lymph node biopsy and Mike stopped in to beg a plead with someone to do an MRI for me before the biopsy. He was too softspoken and sweet, not like Tammy the NP who sounds like quite the pit bull when it comes to scheduling (kind of reminds me of my coworker Karen ;) so no MRI today.
Anyways I was an hour and a half early for this appointment but they still took me in. I had to be pulled aside and shown the ties for my gown hanging on my butt because I was just wandering around holding the damn thing shut. I had searched for ties, but hadn't found them. After quite a few minutes of deep breathing exercises to keep myself from crying in the waiting room I was called back by yet another SUPER nice nurse.
I forgot to tell you I had a Valium tablet in my purse I was supposed to take when I was done with the MRI because I was pretty anxious about the biopsy. My fear was related to the pain (this time we were going to try something other than lidocaine) and the "gun" they use to take the tissue sample startles me (I have a fear of balloons, guns and any loud abrupt noises - I tweak out). Well with the hubbub of the screwed up MRI I left that pill in the waiting room with Ben, and then convinced myself it was too late anyway to take it, I told myself if I took it now I would still be nervous and jerky for the biopsy, but then drooling and nonsensical on the ride home. Plus I had taken an L-Theanine supplement to help with the nerves earlier that morning.
I did freak out!
One node sampled. Not too bad.
"Your nodes are lower than you would think" - Must be those misplaced nipples told the lymph nodes that the weather was better down south...
Digging deeper for a lower node...OUCH! Snap Snap...me jerking and blubbering on the bed. The radiologist was super nice, as was the nurse who's hand I was clawing. I guess they think they went deeper than the numbing medicine and eventually I calmed down so they could put in their twisty metal marker so the biopsy site will show up on imaging.
I survived, no valium!
The radiologist, who coached my breathing to help me stop wiggling while I blubbered, explained that the pain made my emotions about everything come flooding in, nerves about the procedure, confusion and sadness about the diagnosis and the unknowns of it all. I felt less like an idiot and more like a brave linebacker, I weathered the biopsy, and came head to head, or shoulder to tube with an MRI machine.

So today is done, tomorrow an MRI, hopefully, and more bright spots.
A few bright spots glimmered throughout the day and just after we got home my dear co-worker had fixed a bunch of lights in our milking parlor so you need sunglasses to milk cows now. Plus a farm employee was willing to cut her date night short to come milk tomorrow morning so Ben can drive Miss Daisy to Syracuse again.

I promise shorter posts soon, but it's quiet in the house with Ben at the barn and the kids are staying with Grandma and Grandpa since we have to leave before dawn, so writing on the computer is a pretty relaxing gig.

Put on your pads and play like a linebacker!