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 ...
Dead End Farm - a certified organic dairy farm located in upstate New York. This blog is a way to update our friends and family on what is happening on the farm and in our lives.
Friday, March 17, 2017
Monday, March 6, 2017
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!
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!
Wednesday, March 1, 2017
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!!
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!!
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