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Wednesday, November 15, 2017

Breakin' Free & Makin' Fanny Packs Cool

Surgery to remove the infection and deconstruct my early stage reconstruction was last Wednesday. My chest doesn't look much different from what it was a couple weeks ago, but it is much better looking than the swollen, red, infected version.
The tissue expanders are gone, feels very good - no more steel plate feeling in my chest or heavy weights when I recline or bend forward. The cadaever flesh is gone, not as noticeable but I don't get the occassional ripping feeling I had when I moved certain ways.
My undershirt is sagging and showing my crinkly wounds. My port line and my JP Drains (two little rubber grenades that have tubes that go into my chest and accumulate drainage) are pulling on my shirt and there's no cleavage to hold it up, but I've been used to that for 2 months and I'm fine with it. Just hope everyone else is fine with it if they accidentally get flashed my raisin chest.
The last week has been a little trying emotionally, but I have weathered the storm with more grace than I would have previously given myself credit for. I was under the impression that I would go home the day after surgery, Thursday, but the looks on the nurses' faces said a different story. I saw my Doc Thursday and he said sorry but we have to wait until the bacteria cultures come back on Friday and then you will go home, but it won't be until later in the day. Again the nurses' faces said that was not a sure bet.
Friday evening came and no culture results. We were waiting for the "Sensitivity Test" which is a petri dish where they grow my bacteria and see which antibiotics impede growth or kill the surrounding bacteria. Saturday morning the on-call plastic surgeon came in with a solemn face, he had the results, but he knew Pejo, my surgeon, had gotten my hopes up that I would be going home as soon as those results were in. That's not how it works, especially on the weekend and a holiday weekend to boot.
So we knew that my bacteria is MRSA, the super fun antibiotic resistant kind. But before you get too worried, please know that MRSA is everywhere and if you've recently spent time in a hospital, nursing home or infusion center, there's a high likelihood you are carrying MRSA in you right now. What I have is a Staph infection, but because it is anitbiotic resistant it's called MRSA and because I had foreign bodies, the tissue expanders, I had a prime environment for those critters to hide and multiply in an area where my body was struggling to fight them.
My immune system was depressed from the pneumonia and everything else going on with me and I started building some fluid around the expanders so the bacteria started congregating there and eventually made their way into the tissue. So by removing the expanders and the cadaever flesh we are taking out some prime real estate and by removing the skin and tissue in my body that was too infected to recover, I am now in a better position to fight back against the remaining bacteria along with the help of my new best friend, Vancomycin.
So Saturday morning the on call Dr had to convey the bad news that a) we had to wait until Monday morning for the infectious disease doc to write the script for what I would be on to continue this fight and b) we would have to wait until after the weekend to finish getting home care set up. So a few tears later I resigned myself to finishing out the week in room 653 and continuing to listen to Mark holler if someone came into his room at a time he considered inappropriate.
I was able to have more time to accept visitors, good news, right? Ladies from hours away now had the opportunity to catch up with me since I was a caged animal. Visits sandwiched a few tears here and there about missing my kiddos and feeling like maybe the rest of my life would be plagued by the feeling of being a sicko, always fighting one thing or another. But those tears were pretty scattered and I had fun getting to know all of my lovely aides and nurses, except for one who weirded me out one night.
The nurses had been putting in IV's all week to administer the bags and bags of antibiotics and by Thursday or Friday I had 2 IV lines going in my arm at the same time and I had 2 spots where they had removed previously used IV's because the Vanco had worn out my veins.
Friday afternoon I was visiting and having a good time, starting to ignore some pain and dampness at the IV near my elbow. My guests left and I called the nurse, damn it hurt and now there were drops of fluid coming out. They pulled that IV and started using the one at the base of my thumb (not a comfy IV to begin with) and by that night my arm was painful.
The IV site in my hand began to get painful, but they flushed it and it felt better, for a while.Numerous times the nurses had talked about accessing my port and had contacted my Oncologist to see if they approved of this use of my port/central line. It seemed like someone would mention accessing my port and then they would decide to finish using the current IV or that we didn't know how long I would be on the vanco.
Saturday morning brought more pain in my hand and expanding redness in my arm/hand so my nurse, pissed that no one had accessed my port the day before, accessed my port and we never looked back. But Saturday night brought more and more pain, swelling, redness, warmth in my arm/hand so they watched me for Red Man syndrome but figured it was IV infiltration and phlebitis and spoke to the doc regularly about it while we iced it all night long, thanks Andrea for taking care of me that night!
Sunday morning the Doc looked at it and sent me for an ultrasound, it was phlebitis with a small blood clot, but not a deep one so not much concern.
Kiddos got to spend a lengthier amount of time with me Sunday which was really nice, but really hard to see their tired little faces leave and watch the car pull out of the parking lot (I have a bird's eye view of the main lot). Tears and a quiet evening, the first one without Ben hanging out until bedtime. I had made promises of seeing them at home on Monday. Again Andrea to the rescue, listening to me vent about missing my kiddos amidst some mild blubbering.
Monday brought hopes of coming home, but fears that it would again fall apart. And sure enough the Case Manager came in around 11 to explain that they had the script for my meds and home care, but that the shipment of home meds coming out of Syracuse had no way of making it on the truck for Monday delivery, nor did we have time to get the Home Care up and running...
Later I met the home care nurse and she explained that the meds/devices get made and shipped directly out of Syracuse and their truck route wouldn't be in Candor until 1pm Tuesday, so I got to spend one more night with my homies and Mark.
The kids got to come hang again Monday night and have another ginger ale party in my room watching cartoons and playing Dr. This time I still shed a tear when they left, but not as bad.
Tuesday morning my hallway smelled like poop and the skies were gray, but I was happy. I took my morning stroll around the small Memorial 6 section of BGH I had resided in for the last 10 days and mentioned to the Nurse Manager that I would be able to help her with performance reviews anytime, she agreed I should come back for that.
Some paperwork and a few vials of blood and I was out the door. Good bye room 653, now named in honor of me, goodbye Mark who sounds like a jerk, but the nurses say is a fuzzy teddy bear underneath it all. Four months in the hospital with little hope of making it home on your own again would make anyone a little angry. Goodbye tattooed guy who wandered the halls aimlessly like me, goodbye little old lady across the hall who was excited to finally be walking after months and months, but too weak to return home. Goodbye to the aide who had a freak out in my room one night because she thought the psych ward patients were breaking in (she ran out of the room to get help and then told me to ring my bell if I heard more banging - sweet.) Goodbye to a whole bunch of awesome caretakers, wonderful women and one cool dude named Victory. Goodbye to Flo from the ER who got an IV in an overly swollen hand arm and by talking with Ben about their mutual love of abcesses found out she was someone who helped our dear friends Aaron and Bridgett shortly before Aaron passed. Good people!
They actually let me walk out Tuesday morning, I guess they thought it was a slap in the face to make me get in a wheelchair after days of pacing floor 6. After looking up at my window on the way out of the parking lot, I immediately started analyzing Ben's driving to which he said "I made it back and forth to Binghamton for the last 10 days by myself, don't think I need your help."
We stopped at our building project on the way home and I got to see Joel and Roy, then we saw B and Keith at the farm, it's funny how excited I was to see these goobers!
Fanny Packs are Cool
My home care nurse arrived later and taught me how to connect my meds, a clear beach ball with compressed air that provides a continuous 24 hour release, to my already accessed port. She also brought me a plain black fanny pack that needs some bedazzling because I will be wearing this high fashion device 24/7 for the next six weeks.
Home is wonderful, busy but wonderful. Kids are great, Ben is a little overwhelmed, I'm feeling wonderful.
Started reading "The Book of Joy" and so far it's really speaking to me, thanks Cancer Gina! It's about finding happiness and the book is basically just a discussion between the Dalai Lama and Desmond Tutu about joy and happiness, especially in the face of heartache and tragedy. It really makes sense that too often we wait for external stimuli to bring happiness to us instead of approaching life with joy even in the face of awful situations, thus creating long lasting happiness for ourselves no matter what. Gratitude/prayer can play a big role in the way you approach the world, but taking ownership of your own inner peace and your own level of joy is important, whether you are exiled from your homeland or stuck in a hospital for 10 days. I freaking love life, doesn't mean I don't get depressed sometimes, but I can take ownership of those feelings and quit hoping someone is going to magically fix those for me. (By saying this I am not belittling mental health issues, those are real and very beyond your control)
I keep saying "it is, what it is" to people when I talk about the next roadblock or task in this journey, and it's not that I take it lightly, I just have to keep plugging along and not wallowing (for too long anyway) or else what good can come from any of this? Everyone has shit, in the words of a good friend of mine.
Anyway, I'll start radiation in a couple of months and probably won't every take steps to get boobs back, I'd rather get on with life. Rock your fanny pack! Anyone own a bedazzler??

See mom no boobs!

Wednesday, November 8, 2017

Swollen Craisin Boobs

An update on the last 2 months....
Waking up from a double mastectomy+reconstruction = run over by a dump truck. My breast surgeon had warned me about feeling like I had been run over by a truck and then a day later feeling like it was merely a car, but I wasn't prepared. I would argue it was a dump truck and a day later an unloaded dump truck and maybe 4 days later a car.
My Breast Surgeon, Dr Anne, doesn't allow visitors, laughing, phone calls, texting, TV, nothing, just lay there. Some of the nurses poo-poo'd this, but I am in total agreement, no friggin way could I have handled talking to visitors or focusing on anything other than being still and sleeping. I had a male nurse (there seems to be an abundance of them at Lourdes) who tried to be funny, it was his way of lifting my spirits, but I would have hit him if I could have because smiling made my chest hurt, burn, pull.
You might be confused, it's like a boob job right? Not in any way shape or form! A boob job involves lifting the breast tissue and sticking an implant in under the ducts/tissue/fat. A mastectomy involves scraping all of those ducts/tissue/fat out and in my case cutting out the nipples and areollas. The reconstruction part is where the exponential amount of pain comes in. The layer of muscle under your now non-existent boobs is scraped off your rib cage and a tissue expander, which is like a plastic pillow that is deflated, is placed under the muscle. Then a sling of either denatured pig flesh, or cadaver in my case, is sewn in from your armpit to your sternum to serve as an internal bra for the tissue expanders or future implants.
My mastectomy included removal of the entire packet of lymph nodes on the left side because we knew 3 nodes had already tested positive for cancer. Some people will have a sentinel node biopsy to potentially avoid taking the whole packet and increasing the risks of lymphodema in that arm. My pathology report showed 5 nodes in that packet and all 5 still had signs of cancer.
After 2 nights in the hospital I was able to go home, sleep in a recliner and occasionally move to a different chair with about 6 pillows wherever I was to keep my arms propped just so. For a while I couldn't reach my face to push up my glasses, wipe my own butt or pull up my own pants. Ben and my Mom were busy with me and the kids, mornings meant getting me to the bathroom and then getting me situated so the kids could get ready for school. If I had an early doctor appointment  it took one adult helping me get ready and one getting the kids ready for school.
Slowly that got better, mixed in with some crazy emotions when I got that initial pathology report about my lymph nodes, I truly thought I was dying, maybe a year, maybe a couple, but I thought it had been growing for the whole time I was being "treated".
My initial biopsy showed Estrogen+, Progesterone +, Her2+ tumor which is aggressive but also has a lot of treatment options. The pathology after surgery showed Est+(100%)/Pro+/Her2 negative, which had us worried that the initial biopsy might have been misdiagnosed and with the Her2 negative I may have been a better candidate for sugery before chemo becuase that doesn't respond well to chemo. We freaked, I quit whining about having no boobs and realized that was so insignificant in the big picture. I couldn't wrap my brain around what life for my family was going to look like.
Then my oncologist called me late one night and talked me down off the ledge, he explained that there can be different types of cells within the same tumor and there was good news in that pathology report. We had killed all the triple positive cancer with the chemo and that's the aggressive one, so kuddos to us for acing that test. Second, since the 100% Estrogen positive tumor remaining feeds off of estrogen we know how to control estrogen and had shut off my ovaries months earlier.
I started feeling better, but then had a flu-like reaction to a dose of Zometa (to help strengthen my bones against the cancer) and that set me back for nearly a week. Later we are questioning if this was truly a reaction or the first indication I was coming down with pneumonia.
A review of all my pathology slides by Roswell Park showed that the cancer had not spread beyond my lymph nodes, but that there was a possible spot where the tumor was too close to my skin so I went back into the OR on October 16th for a skin excision which took another 6cm of skin up from where my nipple had been.
The pathology for that skin showed it was actually free of cancer. Yay!
Recovery continued and I didn't need constant help with the kids anymore, but about 5 weeks out from the original surgery I started getting more tired and some swelling at the end of the day. I wasn't thinking it was anything other than me doing too much. Then Saturday the 28th I just had to sit back and watch the kids carve pumpkins because I was too tired, then Sunday I was achy everywhere and had no desire to move (I blamed my oral chemo, Arimidex), but my mid afternoon I was feverish.
I love Dr. Anne, she has no answering service, we call the hospital operator and tell them we need to reach her and she calls us back within minutes. She gives explicit instructions and tells you when you should think about calling her again. So Sunday she told us to call back if my fever got over 101, which it did at 9:30 that night and I had some minor swelling on the right side of my chest so she instructed us to march to the ER and to ask for a whole battery of tests and call her if they have any questions.
11pm-3am in the Lourdes ER = a pneumonia diagnosis and sent home after some IV antibiotics and fluids. Again DR. Anne was talking to the ER doc in the early morning hours even though I'm certain she had surgery early the next morning.
I started feeling better by Tuesday and saw Dr Anne again and she did an ultrasound of the swelling to see if it was in the tissue or not, looked good, so more waiting and watching to see if the pneumonia antibiotic would keep everything heading in the right direction. Thursday there was some light redness and then by Friday morning it had worsened and Dr Anne's nurse set me up to see Dr Pejo the plastic surgeon before the weekend.
Dr Pejo outlined my redness and told me if it spread drastically beyond those lines to call. Each evening I was getting warm about an hour before my antibiotic but not a full fledged fever.
By Saturday evening I just felt off. Sunday morning I woke up to pain on my right side when I took more than a teeny tiny breathe. So we headed to the ER and called the on-call DR in Pejo's office, still thinking the redness hadn't spread too much. She asked us to go to Wilson Hospital or Binghamton General (her preference) so that Dr. Pejo and herself would have floor privileges to check in on me. Then we called Dr Anne and she told me to go wherever I was most comfortable and probably Wilson because they see more acute problems. I felt more comfortable going to Wilson than General because I've never been to General's ER, so off to Wilson we went, with strict instructions from Dr Anne to get a CT scan.
After a couple of hours, X-ray, EKG, CT plus the standard blood and urine they decided my lungs were clear and there was no concern about a blood clot. When the ER Doc looked at my wounds they were significantly more red than they had been only hours before.Why the breathing pain? The infection was causing enough swelling and inflammation to make breathing uncomfortable and actually I could walk around and be comfortable, but the minute I sat or reclined it became painful to breathe.
As the ER doc finished giving me more IV antibiotics and was getting ready to send me home with more meds she was also waiting for a return phone call from the on-call Plastic Surgeon, Dr. Adepoju, and bam Dr Adepoju just showed up. She was in the area and decided to swing by to see it for herself.
Immediately she said she wanted me admitted and that it was a strong possibility that the tissue expanders would need to be removed so I was supposed to start fasting at midnight. I also needed to be transferred to Binghamton General where their offices are so they could check in on me. I got teary-eyed and she was extremely gentle and kind, understanding that my sadness was due to continually being separated from my kids and the fear that might be causing them.
We discussed my desire to be rid of the tissue expanders and go "flat" and she assured me that it's not a decision to jump into, but rather try to ride through these storms and see how I feel on the other side. I felt much more comfortable having that conversation with her than Dr. Pejo.
I got my first ambulance ride!! It was hugely frustrating when I was perfectly fine going there in my own car, but oh well.
Monday my wounds were much less red than Sunday so they decided to wait and see, mostly because Dr. Pejo wanted to be absolutely sure my pneumonia was gone before he thought about taking me to the OR and he wanted to have me see the Infectious Disease DR that visits all the local hospitals acting as a detective in these sagas of infection. Tuesday the redness was no better and it was a long day of waiting to see Dr Pejo and the infectious disease Dr. I walked laps, I read, chatted with my nurse, listened to the jerk next door yell at aides and nurses and had a visit from Quinn (the boys had dinner with me Monday night.)
Dr Pejo came and we were in total agreement that the tissue expanders need to come out and he would leave it up to his office to fit me in today (wednesday) in the OR. He stole the cashews out of my mixed nuts and left.
Then Dr Fenlon, the infectious disease doc, came to visit. She is like CSI for infections and we talked about everything that has happened, plus questions about my life that I wouldn't have thought to connect with my current situation. She was also in agreement that my expanders have to come out today and that Pejo would be removing as much tissue and muscle as needed to get my body to turn the fight around. She was very impressed with how hard my body is fighting with all that it has already been through. She also asked that I find something to keep me busy, reading fun books(nothing dark), doing something like knitting ( I'm so uncrafty) or yoga...so this morning I am writing and instead of just doing my minor exercises in my room I held some stretching poses. I can't think of a hand craft I can do that I can tolerate...
Anyhow, I'm fasting and waiting. Waiting to get my raisin boobs back and get this hideous swelling gone. As hard as it was to look at those shriveled pillows of skin in those first few days, i'm ready to be rid of this mutilated swelling and get back to life instead of focusing on babying these foobs (fake boobs) along. They might look more like craisins with all the redness, but you get the idea.
I've had tears here and there and a meltdown yesterday when I realized this was going to delay radiation by 6-8 weeks, but I'm ready. Ready to get these foreign bodies OUT! Ready to be able to cuddle with my kiddos daily again. Ready to let my Mom and Ben get back to life that doesn't revolve totally around me. Ready to be rid of Mark as my next door neighbor, who likes to call nurses idiots. Ready to keep working to keep cancer away, instead of fighting infections.
This was a freaking long post, sorry. Maybe while I'm home doing IV antibiotics, I'll spend some time filling in the gaps of this post...
Thanks for the food and the visits and the love!
-K
I'm not proof reading this one, time to do some crocheting...NOT!

Friday, July 14, 2017

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!!

Tuesday, April 11, 2017

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 
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!

Friday, March 17, 2017

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 ...

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!

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!!