The New Normal

It has been too long since I posted a real update instead of the Facebook or Insta updates. Thing is I felt awful during the last 3-4 weeks of the first round of chemo. Each time I had the dose of A+C, I kept waiting to feel better.

On the last round, the “feel better” did not come until the third week afterwards. The week I negotiated off from chemo with my doctor. And thank goodness I did. My body and spirit needed time to recover. The doc was not going to let me have two weeks. Believe me, I tried. But one week was not a big deal in the grand scheme of things. Recurring theme that keeps coming up for me, know my own body and advocate for what I need in this process. Over and over again.

But this week, it’s totally different. I’ve started my second and LAST round of chemo.

To get technical, this is Taxol only. I’m not doing “dose dense” like some do, but following the docs reco to do a longer schedule with a lower weekly dose. They say it will be easier. So far, my body agrees. Hoping to keep it that way. I’ve got one dose down and 11 more to go taking me to the third week of January. One quarter. Three months. In my “normal” life before breast cancer treatment, that timing was a flash in the pan, over before you know it. Somehow, this quarter in my new reality of BC treatment seems a little daunting. I’m grateful to have things to look forward to like good girl friends coming to down, Thanksgiving break, and the holidays of December. David suggested that maybe we ought to have the “12 weeks of Christmas” instead of just 12 days to coincide with my chemo schedule. I’m up for it. The Christmas tree lots are not open, but I tell you what, Target already has their fakes up and ready to go!

One thing that also keeps happening during this treatment process is I keep having to assess a “new normal.”

What I mean by that is after every course of treatment, my body, mind and spirit shift. Some things are easier while some are tougher. In a year, full of big changes – new work, move, new school, new home – it’s a lot of shifting. Once I get a schedule down and think things are moving along, it’s time to change again. Example, my first course of treatment was surgery. I couldn’t use my left arm. Exercise was limited and no picking up Grier. Now, all of that has faded away (gladly). In the span of a week, I took three yoga classes. That’s a lot of downward dogs people! Feels empowering.

On the other hand, this new course of smaller dose chemo was supposed to take less time per the doctor. But last week when I started the protocol in the infusion floor of UNC when I asked the nurse if this would take twenty minutes, she gawked (side bar: nurses always know more!) and explained how this would take at least two hours. “Oh, and did they tell you you’re getting a Benadryl to ward off any unwanted reactions to the medication?” Absolutely not. How the hell am I supposed to get home since I drove myself here?

We worked it out, but now I must adjust my schedule for myself, for Grier, for David, for my client, for the babysitter and for that unknown person who will be picking me up since I’ll be in a Benadryl induced asleep. The bonus was I did get to sleep right through infusion day which can be stressful. Small gifts.

I guess we all must deal with “new normals” in our lives. That is life, right? The shifting of priorities and what supports that to happen. I’m getting to exercise this “shifting” muscle much more than I ever have before. Somehow, I don’t know why, but I think there must be a reason for this. Surely this new skill will help me in the future or allow me to help someone else.

Today, the day after the election, it seems apropos to bring up the “new normal.”

That all of us regardless of candidate must shift how we see ourselves and the country we choose to live in. I mean, I’ve thought about Canada, but I don’t really like the cold. Right now, I’m sitting in my warm, comfortable house, with running water, a fridge somewhat stocked with food and an amazing bathroom. Yesterday, I was complaining about folding the (damn) laundry, but then I remembered the Peace Corps. I had to wash all my clothes by hand. In a tub. Without electricity. Even in unsure times… breast cancer treatment and recovery… fear of division taking over the country… there are ways to see the “new normal” as a way to flex the muscles of adaptation and look for the love and good in day to day life.

Because believe it or not, that’s how we SHOULD be living, day to day. Not for something that COULD happen or something that COULD take place. There’s only now. And I feel pretty damn good right now. Physically. I could move at yoga class. I could drive my daughter to school and talk about some kid named, Oliver (Me, “Who’s he again?” Grier, “He wears the jacket.” Right.) I’m alive. I’m breathing. I’m finding joy and peace in today. Now. Here.

Peace people.

[Me dressed for my port procedure. The the whole get-up is colored Carolina blue down to the socks. Something my husband really appreciated. Talk about branding. Nice job UNC Memorial.]

8.31.16 Tata Tribe Update

I’m sitting in bed waiting to go to sleep, but knowing that I need to get some things out in order to actually rest. Tomorrow is my first chemo treatment. And not with just one medication some call “The Red Devil,” but a cocktail of two treatments that will be sliding into my body to kill, kill, kill microscopic cells that are propagating. I’m getting this dose every other Thursday for 8 weeks. Then, we check in with everyone again at the hospital (Don’t misunderstand, every time I get the treatment I’m at the hospital for the better part of the day “checking in”) to see what the third chemo medication schedule will be. On the short side, I’ll be done the first week of December. On the long side, I’ll be done late January. Sometimes I seriously forget how friggin’ serious this is. Moving on…

It’s been overwhelmingly awesome how many of you have reached out and boosted me up. Some have asked what I’m feeling like. The word that just rings clear is NERVOUS. Not about the big picture, but about the small, day to day stuff. How will I feel? Will I even be able to be around Grier or will I be so tired that looking at her makes me want to go to bed? (Anyone who’s had a toddler can probably sympathize with that statement even without chemo running through their veins ;)) Will I feel like working? Will I feel like eating? Will I throw up? Or constantly feel like I have morning sickness? Will the tiredness make me feel like I’m sleep deprived? Will I lose my temper? Will I even be able to be held by David? The questions keep churning.

It’s the UNKNOWN, and I’ve never been that good with a due date that promises the unknown. It’s like being pregnant. I knew what date I was having my daughter, but what would it feel like? What would happen after? And who would I be later after the experience and having a child? Because btw, once you have the BC, preventing it from coming back again is a life-long process and commitment just like child rearing. (Did I just compare cancer to having children? I’m a little tired, but it makes sense to me right now for some reason.)

It reminds me of this question that Martha Beck had for her tribe of coaches. She asked, “Would you rather know the exact date and time of your death? Or would you rather not know?” I was pregnant with Grier and the impending unknown unraveled me so much sometimes that I immediately knew how I would answer this question. I would rather NOT know. The pressure of an impending date and all the things I’d need to do and get done and see and smell and, and, and… would (did) have me living in an almost constant state of anxiety. Whereas the not knowing, I could have a day to day life of enjoyment, some planning and a whole lot of denial. Believe me, part of me wants to run right to the wine bottle right now, swig and go numb. But I’ve been working so hard to change patterns and nourish my body as I step into this new phase. Writing is my new Chardonnay.

You know, the thing about looking back at the unknown of my daughter’s birth and then seeing what actually happened is that it was all very anticlimactic. I mean, I kinda wish someone had seriously sat me down and told me about the sleep deprivation, but all in all, everything passed. It faded away. I have a feeling that tomorrow and the next few months will be the same. They’ll be some parts that suck. No need to dream those up now. But in the end, this will pass. It will fade. And what’s 5 months in the grand scheme of things?

Gosh, I already feel better talking this through with you. Thank you.

Onward… I always did like the color red.

 

Hey there –

Lots to fill you in on with treatment, next steps and how I’m feeling. But if you only have time/want to read a few lines, I’ll give you the Cliff notes version upfront.

This week I went to UNC’s cancer center for a second opinion on the treatment plan I was offered at Duke. My hope was that both plans would be the same, and then I would only be picking which doctor and facility felt better. (Side bar: always wise to get a second opinion. I learned this the hard way during fertility.) That was not the case.

UNC oncologist recommended third generation chemo which is a harsher and longer regime than the second generation chemo reco at Duke.

Sigh.

The big difference is a drug called Doxorubicin, street name Adriamycin, (I just wanted to say “street name.” Sounded cool.) This drug has been known to cause issues with the heart pumping blood… sorry, digressing.

So I decided to turn the “decision tree” upside down and choose which doctor and facility I liked better. Because even though my tumor cells were the most aggressive of their type, a 3 (Official diagnosis, Stage 3A T2 N2), my BC was pretty run of the mill. I do not need a new kind of therapy.

I decided to receive my care at UNC going forward with Dr. Lisa Carey. You know why? Because she listened to me. She told me that even if I did not want to go with her reco, she would treat me. She also emphasized this is a partnership in treatment. And any question we had, and I mean any, she methodically and openly explained the science, the rationale and the studies. It also helps that she was recommended by an oncologist at John’s Hopkins and trained with him.

I know what you could be thinking… is this another Duke vs. Carolina thing? 😉

Oh no.

Duke’s reputation in cancer is much better known than UNC’s, so was my doctor’s. But, I felt unnerved every time I went to Duke. I also felt unheard, dictated to and ultimately like I was in a “cattle call” for cancer. I needed to follow my heart for this type of care because it’s a lifetime commitment. And the next 6-8 months are going to challenge me in ways that even a civil war in Yemen did not.

That’s the short of it. I get my port on August 29^th. I start chemo on September 1^st.

The long of it… this sucks no matter what. And it’s just more serious than I ever wanted to believe. We were so excited about our move and getting settled in that most of that excitement is dimmed. We all keep trying to make the best of it. But doing such a big move with this treatment is hard. Our family has been great, don’t get me wrong. Helping out. Calling. But we miss our network of friends. Hoping that things lighten up as we move into the Fall.

Even more serious is choosing the right path for me. Some people suggested I just “buck up and move through this.”

I get it. That’s one way to handle it. But it does not work for me.

Why? Because I did that once and I killed the fetus in my uterus. This time, I want to ask as many questions as I can. Make the most informed decision. And have no regrets in the end. Which is why I’m questioning, reading and talking to people.

As an example, my new oncologist at UNC would have me believe that eating sugar does nothing to cancer cell growth. There are no clinical studies that prove this. (Her example was that when she sees people at the end when the cancer has taken over and they are not eating a thing, their cancer will keep producing its own sugar. It does not need the outside white version to help it along.)

On the other hand, if I read and watch information on The Truth About Cancer and read other doctors’ info, they’ll say exactly the opposite! So what is the truth? Probably somewhere in the middle

Where do I go from here? On doing 3^rd Generation chemo, I’m undecided. My new oncologist says a new study came out in June that showed for my more aggressive tumor cells, this regime is better in the long run. I had an EKG on Thursday to look at the function of my heart as a baseline for this treatment. I’ll read more and decide. The last thing I want to do is take a drug to treat C and have it cause heart problems.

The other thing is I keep searching for and reading about alternative care. Part of me wants to run away from the allopathic route and go full non-traditional. However, I cannot find any info on this working long term esp. for someone my age. In every example I’ve seen, the BC comes back or it comes back as another kind of C in the body. Then, I’m screwed. I think, how would I feel if I knew I did not do everything in my power to reset my body?

For now, I’ll keep searching. I am continuing with my acupuncture and will start an herbal regime that will offset chemo’s affect. I am also working with a wonderful healer in Marin, Sarah McLeod.

There are some who believe that cancer can flourish in certain areas of the body when there is stuck energy or emotional trauma. And that each area of the body manifests a different emotional stressor. Did you know that left breast BC is tied to emotional stress surrounding mothering? I love my daughter, but I’ll say what you’re not supposed to say, being a mother can be really difficult for me. It’s a freedom thing.

Also, I’ve really dug into my diet using all resources available to me. I up’d veggies and fruits. I’m concocting super food smoothies. I’ve even worked with a Functional Medicine doctor who tested my blood for food sensitivities. Said another way, what are the foods that may cause inflammation in my body? Current list: carrots, plums, peaches, corn, pumpkin, cow’s dairy, casein, spirulina and coffee. I’ve cut those foods along with most sugar. And only red wine occasionally. Antioxidants people.

Next week, I’ll be able to swim!

As always, if you have new info to share on treatment stories and paths, please pass along. Love seeing positive messages.

Thank you for keeping us in your thoughts, prayers, meditations and chants. We love you and appreciate it.

Love, Travis

Hey there –

It’s been a week since surgery. I’m sooooo glad to have that behind me.

Great news came yesterday at the surgeon’s office… I’m healing so well that they took my drain out. (Did I tell you I was going to have a drain coming out of my arm pit?) They also took my stitches out. And I see the surgeon again in 6 weeks. Which means, the margins around my tumor were clean!!!

When they take a tumor out, the surgeon tries to take enough tissue margin around it that no cancerous cells can be found. When my surgeon gave me the report yesterday he congratulated me that I would not have to have any more surgery or as he put it, “You graduate from the Georgiade school of surgery.” The funny thing is, I didn’t even know there was a chance that I’d have to go back. Jeez. Getting news at this place is like getting a root canal. You know it will be good for you in the long run, but right now damn it, it hurts.

Also got pathology back on the lymph nodes. Did you know that you can’t actually see the lymph nodes during surgery? They’re buried in tissue. We knew where the one infected node was because it got a titanium clip/marker in it during the biopsy. That’s what they do to tumors and lymph nodes these days. Track them with a titanium clip.

The doc took out a whole heap of tissue. It included 22 lymph nodes. Whew. No wonder my arm pit hurts. The not so great news is that there was more than one node infected. In fact, there were five. I guess when you pass over the 3-node threshold, plans change and things get a little more serious. So… I do not get to “pass go and collect $200” meaning this is not as simple as going to radiation. It’s time to recalibrate with the medical oncologist. When will that be? Maybe next week, maybe the week after. It definitely means chemo is in my future and probably sooner rather than later. (How the f— did I get here again?)

Anyway, still keeping the eye on the big picture… family, friends, love and 100% recovery rate. The road is gonna be bumpy in between. Thanks for walking it with me. (I mean, you’re probably glad you’re not literally with me. No shower in a week has a funny smell coming out of my left arm pit. Showering on Friday. Big day 😉

More later. Love you, Travis

 

Hey there –

Some news, but no plan yet.

Good news:

• I do not carry genes for the BC or for ovarian c either. Great news for Grier.
• It is confirmed, I do not have C in my bones or other body parts with the exception of knowing for sure in my right Tata.
• And really one of the best pieces of news… we met our deductible for the year!

Not so great news:

• The lymph node (one for sure) has metastasized and is a little larger than they’d hoped.
• This leads to the other new piece of info. If the scale of all BC is NOT GOOD to VERY BAD, I’m probably falling in the middle.

Yesterday, we’d hope would be a chance for us to hear our plan from the doctor and move forward. Make some decisions. But, still need some more tests. I’m trying to roll with this and not think that the BC inside of me is growing and growing as we analyze and analyze. Deep breath.

Next Steps:

• This Friday, I have a MRI Mammo scheduled. Purpose, if lumpectomy is chosen, this test is needed to located the exact space the tumor and lymph nodes inhabit. Will make easier to take out. If mastectomy is chosen, I don’t really need this test for my left Tata. However, I also need this for my right Tata to see what’s happening in the dense breast tissue. Caveat to this is that 50% of the time in someone like me they find a lump in the untested Tata. Thing is, the MRI does not have definition enough to know if that lump is benign or other. So, another biopsy will be administered to get more data. Another deep breath. Note: Biopsies suck.
• Regardless of which operation I have, many more lymph nodes are coming out. I guess with the mastectomy there is a larger risk of lymphedema, the crazy swelling that can happen in the arm next to infected Tata once lymph nodes are not there to help drain. It doesn’t ALWAYS happen they said and because I’m on the small side I have a better chance of not getting. But really? I know they are supposed to tell me everything, but sometimes, I wish I could have a primer before or after the visit so I was not taking in so much damn new info at one time during a highly emotional visit. Really, the system needs to change to help people. Moving on…
• I was trying to avoid radiation all together. Keep reading how harmful the long term affects are. Duke would highly suggest that I do it either way – lumpectomy or mastectomy. I thought, and I still may have a slight chance not to do it if I have a mastectomy and there is only one infected node. But then, I’d only have one Tata? There is good news here. Surgeon said if I go with their recommended therapy I will come through and probably live a long time. Said he does not get to say that to everyone in my situation.

Anyway, more info gathering to make the decision of next surgical steps. The options are – lumpectomy, mastectomy with no reconstruction or with, or double mastectomy with no reconstruction or with. Then, radiation. Not really good choices. I am a little baffled that this is as good as we can do in the 21^st century. I have been reading up on alternative routes. Send info if you have it. But seriously, even in the allopathic medical system, there are so many differing opinions of what to do that I’m starting to swim in an overload of info. Finally, at 4am last night as I lay awake not being able to sleep decided that really what I want other than to live a long time is GRACE and EASE going through this process. Please see this for me… grace and ease, grace and ease, grace and ease.

(BTW – no reco on chemo or hormone therapy yet. Really important to understand with the BC, there is no diagnosis/stage until they take out all infected tissue, run through the CRISPR and get an oncotype. I feel better about the chemo vs. the radiation. Also, not so hot on hormone therapy considering, didn’t hormones get me in trouble in the first place e.g. fertility treatments?)

Love you, Travis

Hey Tata Tribe –

I wrote an update 5 days ago. I meant to finish and send. But when I read it again, the words were a jumble and the details were all over the place. This is exactly how going through this feels right now. Overload. Overwhelm. And just plain hard.

Since my last update, I’ve met my surgeon, radiologist, had a CT scan with contrast, had a bone scan with active isotopes and Monday a lymph node biopsy. Ouch. Something I’m still feeling. (Plus, managing this new, yucky house we moved into, Grier’s first day of nursery school, and work.)

Good news, I think I’m finished with my tests for now. Also good news, the test results are on “My Chart” within the Duke system. The not so good news, since I’m not a doctor, I have no idea what the f—- they say. Seriously. They’re posted in doctor speak without as we would say in marketing, a customer friendly approach. I think, but am not totally positive, that my CT scan and Bone scan came out clean. Unbelievably great news if my synopsis is correct. When staring down the BC, one breast and one lymph node seemed totally doable vs. my reproductive system and bones. Perspective.

On the side, I’m dating other caregivers. This means that though Duke is world renowned, and everyone says this is the place to be, I need other specialists to round out my care. Thanks to my dear friend, Andi Crosby, who works at the Institute for Functional Medicine, I also have another advocate/doctor based in CT who will act as a sounding board and GP (general practitioner to those of you not in the doctor lingo know.) He’ll help me with diet, long term care and getting to the bottom of why this has happened to me. He already has a hypothesis…

Also, I’m dating an Oriental Medicine practitioner hoping to get acupuncture and herbs (which is actually how I got pregnant with Grier.) The hunch is because of the lymph nodes being unhealthy, I will need chemo (sigh) and the Chinese medicine will help a great deal.

I just want you to know that deep down, I’m starting to get really pissed off. Not at god, not at the universe, but at a medical system that is not whole. I think this could be a really good thing. Because we all know when I get pissed off, I can make things happen. One of my friends coined this long ago as “don’t poke the cobra.” Consider me poked.

My surgeon (btw, the head of dept. at Duke and a plastic surgeon to boot!) has a team who helps him. To his sassy nurse I asked, “How many women are you seeing like me who are young, took fertility treatments and now have the BC?”

“Too many,” she replied. “Oh, and we’re starting to see even younger women who’ve been on Mirena.” Note to you… anyone you know using an IUD, tell them not to use Mirena. This is not conspiracy theory. More young (teens) are coming in with unhealthy cells due to the hormones in Mirena. I mentioned to a friend on the phone who was going to tell another friend to get off of this. There are so many other choices.

Also, I wanted to say to you that I was not sensitive to the fact that others reading this email have had fertility treatments like me, maybe even more. I’m going to uncover what led to this growing in my body, but it’s never just one thing. I just want to be clear on this for you. I’m finding out with my CT doc that since I have an autoimmune disease, hypothyroid, I have a higher chance of creating the unhealthy cells in my body. It’s so multifaceted. And everyone’s body is so very different.

I will tell you that my fertility doctor did not have a conversation with us about the risks of what I put in my body. And that needs to change. A conversation needs to be had so that families can make a conscious choice. I was not conscious of the choice I made. Maybe shame on me for not doing more research (or getting Aunt Maggie to do it). But I can tell you as anyone can that has struggled with fertility, sometimes the rational mind is not leading the way.

I do want you to know that already our Tata Tribe has helped two families. One considering fertility went to their doctor and asked to have a conversation about risks of the medication. Another will be stopping her use of Mirena.

Thanks for all of your calls, texts, and emails. Keep ‘em coming. I think as my treatment plan comes together, I’ll be reaching out for more support.

Maybe I should put this on my blog?

Love, Travis

To My Tata Tribe –

How do I talk about yesterday? It was entering a whole new world. And this does not intimidate me. I mean, I’ve entered Yemen, NYC, sketchy night clubs and hostile business meetings. But as I looked around I realized that I was not like the others. Remember that Electric Company bit where they have 4 pictures? Three of them are alike and one of them is not? I truly felt too young to be there. I felt to healthy to be there. I felt too educated to be there (I’m letting this all hang out. Ego and everything.) Yet, I was just like everyone there. I have cancer in my body.

Side bar: I’m going to try my damndest not to say the “c” word. You know why? Because I have this belief that the more I focus on something the more I will create of it. (I need your help not to use the “c” word either. Let’s call it “unhealthy cells.” Let’s call is “the mass.” Let’s call it “the stuff that is going to go away.”)

‘Cause the thing is, I found out yesterday that I have more of this stuff that is going to go away in my body. It’s traveled to only one of my lymph nodes. Damn. Good news. Only one. And that’s all I’ll say. I’ll have to have another biopsy next Monday.

In the meantime, I’m a busy lady. Wednesday surgeon and radiologist. Friday, another CT scan and a bone scan. My well known, well studied and deeply knowledgeable oncologist wants to rule out the spread of this anywhere else. It’s suspicious I have the blood clot in my ovarian vein. (Ok, not going to that place. Leaving that behind.)

Breathe.

Here are some nuggets that I took away from yesterday that I was not expecting….

• I have not been diagnosed. Let me say this again, I have not been diagnosed. The diagnosis I got in Marin while somewhat accurate was not complete. It took me awhile to catch on to this sitting with the doctor. She needs more tests and info to make an accurate assessment. This is good news on the one hand. It’s just, I wasn’t prepared and thought I’d be “farther along” after my meetings yesterday whatever “farther along means.” (Note to self: let’s be present to expectations so we can “work” those thoughts and try to let them go.)
• I point blank asked Doc B, “Why do I have this? What is the cause?” I want to get to the bottom of this so that it does not occur again. I also have a huge opportunity to shore up and reboot my immune system. I’m not missing this chance. Here is her answer… let’s be clear, I did not ask if I could quote her, but here is what I heard…
  1. WHY I HAVE UNHEALHTY CELLS IN MY LEFT BREAST
     1. “We believe (we being Duke) that it is not one thing that causes the BC. It is multifaceted. It could be the cigarette you smoked, the stress you feel, the issues you have with your immune system, the environment you’re in, toxins, but in your case, the reason I think you have BC is the fertility drugs.”

WHAT!!!!!!!!????????????!!!!!!!!! THE !!!!!!???????????? FUCK (Whew felt good to type that word.)!!!!!!

That’s where I am today. Right now. Holy shit. I asked David on the drive home last night, “Did we sign a waiver about this? Did our doctor go over the risks of this treatment?” Honestly, neither of us can remember. I’m adding this to the list to find out. Because everyone who is assessing whether they want to do fertility drugs ought to clearly hear what the risks are. Damn.

I’m being challenged with this for a reason I believe. That’s how I operate in the world right or wrong. This is not the first time I’ve been challenged medically and to advocate either. I’ll get into more of this later. But here’s what’s coming up for me right now…

I’ve got to get the word out to families considering fertility. Help them have a chance to understand the risks and the rewards. Clearly. Ardently. Honestly. Simply. This is what I think is one of the big things that the medical practice is missing these days. They are missing the ability to be of service to their patience. To say and understand that my body is mine. And what I need is an advocate, a partner on the other side that’s putting my best interest before anything else… before their practice, their glory, their buck. I want a doctor who will be fact based and honest. I met one yesterday. Unfortunately, he had an unlucky name for a radiologist – Doctor Grimm. Seriously. But he was kind, present and honest. When he saw my lymph node he produced the facts for me. He allowed me to ask questions, get percentages and have a person to person conversation about results and care. Please, can you help me manifest more of THOSE types of doctors and caregivers? That’s the real help I need now.

I’ll update more when I have concrete news on my care. I’m also connecting with other survivors/thrivers. People have really stepped up and met me where I am offering help, prayers and good, good healing energy. I am so blessed. I am grateful. And I’m really grateful for you walking on the path with me. I need you. Hug everyone a little harder for me today.

Love you, Travis