Everything is Trying to Kill Me: The Fear of Recurrence

I have always had the tendency to be an anxious person. Looking back, there are certain seasons in my life that I can identify as more or less anxious times, but it’s always there. At this point in my life, I’ve gone down a rabbit hole. So the fact that currently my anxiety levels are sky-high is completed justified, as it turns out EVERYTHING is trying to kill me.

What this really boils down to is a fear of my cancer coming back. Fear of Recurrence (FOR) is a very real thing for cancer survivors. Oddly enough, FOR can affect survivors regardless of stage of diagnosis. So, whether you are diagnosed at an early or a later stage, you can experience intrusive FOR. One thing that has been shown in several studies is that young survivors with children (vs. those without children) consistently report higher and more debilitating levels of FOR. So I guess that helps account for what I’m experiencing. At this point in my life, I think twice (or like 50 times) about everything that I put in or on my body.

I try to avoid endocrine disruptors. These are chemicals that interfere with your hormones and can cause cancerous tumors, birth defects, infertility, etc. These are especially dangerous for those with developing reproductive systems (children) and those with hormone receptive positive cancers (me). Anything that mimics hormones can give my cancer something to feed on and therefore grow and spread and then kill me. Unfortunately, endocrine disruptors are in pretty much everything: toothpaste, face wash, shampoo, make up, lotions, nail polish, shampoo, hairspray. Beauty products can be filled with phthalates and parabens (more endocrine disruptors). So I’ve made the switch to purchasing safer, cleaner beauty products or I make my own.

Then, there are your cleaning products. They are full of chlorine and ammonia which are skin and lung irritants. They often contain preservatives such as formaldehyde and other carcinogens. So your house is clean, buuuuuut you might get cancer.

One glass of wine a day can be good for heart health and has protective properties against Alzheimer’s, but is linked to an increase in breast cancer. Well, maybe that explains some things for me….. Kidding. Kind of. I have three kids. I drank a lot of wine. Before learning that wine could kill me. Now I drink, but I’m slightly more judicious about it. Because, let’s be real, I’m not quitting wine. Who wants to live in a world where you can’t ever drink wine? But I digress.

Then there are food choices. Y’all. The food choices. Food is what gives me the most anxiety at the moment. I feel like there are no good choices. Meats and dairy can be contaminated with antibiotics, hormones, and steroids. There are countless studies that show a vegan or vegetarian diet can lower your risk of all types of cancer and help support healing in those who already have cancer. In fact, a plant based diet is the ONLY lifestyle that has been proven over and over again to improve heart health, reduce cancer risk, and improve overall health. But, vegetables can be contaminated with pesticides and eating 100% organic may not be in your (my) budget all the time. You want to avoid carbohydrates because those quickly turn into sugar which can fuel cancer. Some schools of thought suggest you even avoid natural carbohydrates, such as sweet potatoes/lentils/chickpeas, etc. So what the heck do I eat?

I think I’ve mentioned before that the most ideal diet for my health would be a vegan, low-carb diet; however, I’m finding that difficult to sustain while feeding my family and not having to cook multiple meals (because ain’t nobody got time for that). And anytime I eat or drink something that doesn’t fit into this diet, I am having a lot of anxiety and having these intrusive thoughts where I can literally picture the cancer growing inside of me. But I eat. Because I have to eat. But also because I like to eat. And I don’t want to be robbed of that.

What finally sent me over the edge was when I recently learned that crock pots are bad for you. Apparently, they can leach heavy metals into your foods. I mean, really?! Come on. I knew that plastic was bad for you. (Even BPA-free plastics are bad because generally they just use a different chemical that is still an endocrine disruptor.) But my crock pot is in on the plot against my life?! Is nothing sacred?! Next thing you know, someone will tell me that coconut oil or cloth diapers are somehow bad for you (If you somehow have this knowledge, just keep it to yourself. I couldn’t handle it.). I am confident that someone on Facebook could defile and ruin Every. Single. Thing. for me.

I am working really hard to find a balance. I know that FOR is something that will come and go for the rest of my life. I know there will be triggers, such as anniversary dates of my diagnosis and surgery or hearing of others who have been recently diagnosed. But I need to find a way to go on living without being afraid that everything is going to cause my cancer to come back and kill me. Because that’s stressful. (And, by the way, stress will kill you.)

 

 

Advertisements

Double-edged Sword: Our Journey with Infertility

Back in 2009, Michael and I had just gotten married. I had gone off of birth control almost immediately. And while we weren’t trying to get pregnant, we weren’t not trying. Just a few months later, I missed a period. I took a pregnancy test that was negative. Then I missed another and another. Yet pregnancy tests still were coming back negative. Additionally, I was carrying an extra 20 pounds that I just could not get rid of. No amount of exercise and diet would touch this extra weight and I just didn’t feel myself.

Long story short, I was eventually diagnosed with Poly Cystic Ovarian Syndrome, a hormonal imbalance that was causing infertility and unexplained weight gain. The doctor’s told me that the best way to manage PCOS symptoms was to go back on birth control (if I wasn’t ready to get pregnant) or to start fertility treatment (if I was). Several months later, we started Clomid, a medication to induce ovulation. After 2 rounds, we were pregnant with Bentley.

After having Bentley, my doctor explained that while it was POSSIBLE to get pregnant again, my history of PCOS and the fact that I was breastfeeding made it pretty unlikely. Enter baby #2. At 9 months post-partum (and without having had a period), I was pregnant again. Apparently, I was one of those people for whom having a baby corrected my hormonal imbalance. While we were thrilled to be having another baby, having babies 18 months apart takes a toll on you physically and mentally. We both come from families of 3 children and our family didn’t feel complete to me, but I also wasn’t ready for another one any time soon. So, we waited a while (about 3 years) before we decided to try again.

Fast forward to a little over a year ago. It was November 2016, on my 30th birthday, we were visiting my in-laws in Asheville, NC. At this point, we had been trying for our third baby for about 8-9 months. I was trying to be patient (a tall order for me), but I knew that most likely my PCOS had returned and was preventing another pregnancy. I very vividly remember Michael and I going on a run together up the mountain and talking about having a third. On this run, I remember us discussing that maybe it just wasn’t meant to be. Maybe we were only supposed to have 2 kids. It didn’t sit well with me, so I said that I would do Clomid for 2 months and if I didn’t get pregnant, I would accept it as a sign that our family was complete.

December 2016 was my first round. It was not successful. Jan 2017 was my second round. I had called my doctor’s office to request they call in the Clomid; however, because it was a snow day, they weren’t in the office and so the nurse called it in based on the lowest dose. Typically with Clomid if one round doesn’t work, they increase the dosage for the next month. So, I just KNEW that this round wouldn’t work because the dosage wasn’t increased. I had already started negotiating with myself for just ONE more round of Clomid since this round was going to be a wash. But, I was wrong and the first week of Feb 2017, just hours after returning home from Las Vegas, I took the pregnancy test that told us we were finally expecting our third little Karb.

I don’t know why I so vividly remember that run and that particular discussion. I don’t know why the second round of Clomid worked when it was the same dose as the first. Looking back on it all, though, I have a feeling that it was all by design. And while I trust in God’s plan for me completely, it’s a little eerie and unsettling. But honestly, it’s one of the reason’s that I believe in Him so strongly. It’s too much to all have happened by chance.

Here’s the thing… Taking Clomid was my one risk factor for developing breast cancer. While the studies aren’t conclusive, there is some evidence to suggest that stimulating estrogen production may put you at an increased risk. On one hand, getting pregnant likely saved my life. Had I not gotten pregnant, the cancer would likely have grown undetected for quite some time. There really is no telling when we would have found it since I was still over 10 years away from my first routine mammogram. However, the pregnancy also probably sped up the cancer’s growth significantly since my particular type of breast cancer is hormone receptor positive and when you are pregnant your hormones (particularly estrogen) sky rocket.

There’s no way for me to know what would have happened if we hadn’t completed the fertility treatments. The double-edged sword: Did taking the Clomid cause me to develop breast cancer? I don’t know. But I do believe that if we hadn’t taken it again and if I hadn’t gotten pregnant with Eloise, that we wouldn’t have detected the cancer as early as we did.

 

How (and why) We Talk To Our Kids About Cancer

Any parent can tell you that when you have kids, you will never be alone. Ever again. They are everywhere. Always touching you or calling for you or generally needing something. Which means, they are there if you get diagnosed with cancer. And if you have surgery. And if you get chemo. And radiation. You get the point.

The day of my oldest daughter’s kindergarten graduation was the day of my initial consult and biopsy for what ultimately ended up being my breast cancer diagnosis. I went to her graduation that morning and had a breast biopsy that afternoon.

The next day, I was in a lot of pain from the biopsy. But school was out, so I ended up letting the kids watch movies all day (this is something we NEVER do). The kids knew that I had a “hole in my boob” so that the doctors could look at some things more closely to help keep me healthy, but if they were concerned about me or what the doctors might find, it didn’t show through their excitement to watch Moana and Trolls.

A few days later, the family was on a road trip eating in a McDonald’s when I got the the call that it was cancer. (Side note: we only go to McDonald’s while on road trips. We now call it “CancerDonalds” since that’s where we were when I got the diagnosis. I have been a McDonald’s exactly one time since that phone call, partially because going to McDonald’s is now kind of a traumatic experience for me.) I’m not sure what the kids thought about the fact that I stayed locked away in a room by myself all that weekend. I’m not sure they noticed, honestly, since we were at my in-laws and they were getting all kinds of special time with their grandparents. (What a blessing to have them to distract them from the hot mess that I was that weekend!) I just knew I wasn’t ready to tell them anything until I had more information. I’m not afraid to let my kids see me cry, but I also couldn’t spend days sobbing hysterically (this is not hyperbole) in front of them and not be able to explain to them why. So I hid from them for a few days until I could pull myself together.

Over the next couple of weeks, I had multiple surgical consults, but still hadn’t really said anything to the kids, yet. I was waiting until I knew more about the timing of the surgery. At this point, the kids were 4 and 5. And while we have never sugarcoated anything on their behalf, I wanted to make sure that we weren’t talking about something months and months before it happened. I didn’t want this to become a big, scary thing and cause them all kinds of anxiety. I also knew we need to prepare them and I couldn’t spring it on them last minute. Michael and I had talked about it, but hadn’t come up with “right” time to tell our kids that I had cancer (as if there were such a thing).

In the end, Knox just kind of stumbled upon it. I remember being in the car with him and I was on the phone with my dad. He was in the backseat and the music was on and I didn’t think he was listening. (ProTip: They’re ALWAYS listening.) I made some flippant comment about “them cutting off my boob”. We talked for a few more minutes and then got off the phone. A few minutes later, Knox nonchalantly said “Mom, they’re not really gonna cut off your boob, right?” Through misty eyes I replied, “Well…. yea, buddy. They kind of are.” I don’t remember the rest of the car ride, but I don’t think there was any more discussion of it. Or maybe I told him we’d talk about it more later.

That night at the dinner table, Michael and I told the kids we needed to talk to them. I explained that our bodies are made up of cells. They gave me the “Duh, Mom. We watch Magic School Bus” talk. I explained that I had some cells in my breast that were bad and that even though I was healthy, the bad cells were trying to make me sick, so the doctors were going to take out the bad cells to keep me healthy. I explained that to get the cells out, the doctors would have to remove my breast and that I would be very tired and hurting for a long time after the surgery. 4 – 6 weeks recovery time is a long time to anyone, but ESPECIALLY to my 4 and 5 year olds who think that they will not survive a 25 minute car ride without a movie playing. *Newsflash: I do not let them watch movies in the car (except on very long road trips- one side of Nashville to the other excluded) and they always survive. We asked if they had any questions. I don’t recall the specific questions, but we answered what we could as honestly as we could.  And that was that.

Before the surgery, I don’t think I used the word “cancer”. I didn’t think they would understand what that meant, but also didn’t know what they might have heard about “cancer” (a friend’s grandparent dying, etc). So we always just talked about it as “bad cells” that could be removed. Now, almost 7 months after my surgery, I can think of only a handful of times that I have used the “C” word. Because I have not had other treatments (like chemo and radiation), it doesn’t come up much in conversation with my kids. They have pretty much moved on, even though not a day goes by that I don’t think about it.

We talked about “the surgery” leading up to that day and what it would mean for them. “When I have my surgery, you will get to stay a Nana’s house for a few days.” “After my surgery, you all will have to be big helpers because I will not be able to help you get dressed for a while.” Etc, etc. But there wasn’t really much more discussion about the reason for the surgery. They just kind of took it at face value and were (understandably) more focused on how my surgery would impact their daily lives.

After the surgery, the kids were great. They were generally very helpful and generally did what I asked them to do (not to worry- this has since worn off. I’m back to being Just Mom instead of Sick Mom and now they don’t listen to me).

I remember a few days after surgery, I was laid up in bed. A friend came over with her kids that are the same age as mine (to pick my kids up for a play date- not just to visit. Days post-mastectomy is not a great time for a visit). Her 4 year old asked why I was lying in bed. My sweet friend, not knowing how much I had told my children (and maybe a little bit from not knowing what to tell hers), said “She’s resting because of the baby”. Knox immediately corrected her and said “No, it’s not the baby. It’s because she had surgery on her boob.” I was so proud of my little guy who, at 4, was handling my mastectomy like a champ.

Throughout this journey, everything is very matter-of-fact to the kids, I think in part because we are very matter-of-fact when we talk about it with them. I don’t want to hide or shield them from big, scary things, like cancer or death. So I talk to them. About cancer (although not always using that word because of their ages). And it’s uncomfortable, but I think it’s important that we help them understand as much as they can. And that we keep talking about it, because their understanding will evolve as they get older. I don’t hide my feelings about it from them. I let them see me cry. I want them to know when things are sad, it’s ok to be sad. I make sure to tell them when I am a little bit scared and that it’s ok to be scared. I don’t hide it because I want them to know that it’s ok to ask for and accept help. I let them see me down so they can see me get back up. I need them to know how to get back up.

 

What it Costs to get Cancer

If there are 2 things that make people uncomfortable, it’s talking openly about money and cancer. So let’s just do both, shall we? Let’s talk money. Cancer is expensive. Like, break-the-bank expensive. I am going to try really hard not to turn this into a soapbox post about healthcare in America and just stick to sharing some facts about the financials of what it costs to get cancer.

Fact: Most people have health insurance of some kind. The policies, though, vary so widely that there would be no way to compare any one person’s out of pocket medical costs to another person’s for the same condition. It’s just SO variable.

Fact: The costs that are billed to the insurance also vary widely based on the doctor/surgeon/area of the country you live in so these costs aren’t universal, either.

Fact: All insurance companies negotiate contracted rates with doctors/facilities. These contracted rates are the rates that the doctor/facility and the insurance company agree on and actually these contracted rates have very little to do with the rate that the doctor charges. For example, the facility may “charge” $100 for a service, but agree to accept $90 from Blue Cross Blue Shield and $55 from TennCare all for the same service or will charge you the full $100 if you don’t have insurance.

If you have insurance, you (the patient) are charged the contracted rate (also called the “allowed amount” if you look at your EOBs) which will might go toward your deductible if you have one. If you are responsible for a percentage, you are charged the percentage of the contracted rate and NOT the fee that the doctor charges. So what you are charged is based on negotiations between the doctor and the insurance company, which may or may not be loosely based on what the doctor actually charges. Make sense? Not really. But that’s how it works.

For our family, we pay about $600 per month for health insurance. That’s about $7,200 per year. We have a deductible of $3,000 per year, meaning we are responsible for all of our healthcare costs up to $3,000 (although our well visits are covered in full and don’t count toward this). Once we have paid our $3,000, our insurance will cover 80% of charges and we pay 20%. So basically, each year we pay our $7,200 insurance premiums and our $3,000 deductible ($10,200 for those of you who aren’t strong in math), BEFORE our insurance will cover any sick visits.

We have only hit our deductible 2 times before last year (with the birth of each child). We are generally healthy and usually only go to the doctor for well visits and the occasional ear infections when the kids were little.

And then I got cancer.

What I will do is share what costs were billed to my insurance company. These costs would have been billed to me if I did not have health insurance. Since I DO have insurance, only a portion of these were billed to me. I will share my total out of pocket costs at the end.

 

The day I went in for my initial consult, here’s what was charged:

  • $855 for x-rays (mammogram and ultrasound)
  • $495 for lab tests
  • $2,648 for a biopsy (just the procedure of the biopsy. Actually looking at the tissue was billed separately)
  • $740 for “Hospital Services” (I’m still not clear on what this is)
  • $388 for the consultation with the Nurse Practitioner

Total: $5,126 billed just to get my cancer diagnosis. This includes no treatment. This was just to find out why my nipple was bleeding.

  • Consults with surgeons and a lymphodema specialist pre-surgery: $1,791 (I did get second opinions from 2 surgeons so this cost could potentially have been lower)
  • Genetic tests: $15,220
  • Unilateral mastectomy surgery (from surgeons): $20,721
  • Surgery (from Hospital Services): $56,046 (I was in the hospital for about 24 hours!!!!)
  • Surgical Follow Ups: $447
  • Extra monitoring/consults due to pregnancy (consults with Maternal and Fetal Medicine, extra ultrasounds on baby, monitoring before and after surgery): $3,073
  • Miscellaneous lab work and anesthesia: $5985
  • Consultations with Medical Oncologists to discuss chemo, radiation, and drugs: $521
  • Surgical Garments/Mastectomy Bras/Prosthetic boob: $565

GRAND TOTAL: $109,495 billed to my insurance last year for cancer. In addition to the $7,200 we paid for the privilege of being able to bill the insurance.

I’d like to take a moment to remind you all that the ONLY treatment I chose for my cancer was a surgery. I was in the hospital about one day. I did not choose to pursue the other standard treatment options. And I only removed ONE boob (not both). This is literally as cheap as it gets (other than choosing not to treat it at all, I suppose. And I guess you could take out the extra $3,000 for monitoring the baby because that’s not standard).

Since this is a post about the cost of cancer, this does not include my healthcare costs not associated with my cancer, such as for prenatal care, the mandatory hospital stay after accidentally having my baby at home, lactation consults for trying to feed a baby with one boob, or all the therapy I’m now in.

The benefit to our (kind of high) insurance premiums is that having insurance sets a “Max Out of Pocket” cost per year. This is the maximum we are supposed to have to pay and then our insurance will pay any covered services above and beyond this cost. (Side note: Some of the genetic testing was not considered a “covered service”, leaving us responsible for that entirely. THANKFULLY, the company that performs the genetic tests that weren’t covered was able to offer us a grant or a write off or something of the sort so we didn’t actually end up having to pay it.)

Our max out of pocket set by our particular insurance policy is $9,000 per year. So $9,000 is roughly what we were responsible for last year (in addition to our $7,200 insurance premiums). I say roughly because I was able to negotiate a bit on the larger bills for a paid-in-full discount. We also had some charges written off (like portions of the genetic testing). And my husband’s company contributes a little bit to an HSA on our behalf.

Our insurance paid out approximately $27,000. We paid out approximately $9,000. So the total paid out was approximately $36,000.

So of the $109,000 billed out, only $36,000 was paid. The rest was written off or adjusted due to variances in contracted rates…. $36,000 is a staggering amount to be sure. (In fact… I think it’s more than I made last year since I took off several months for maternity leave. Don’t get me started on maternity leave policies…) But, it doesn’t sound so bad when the alternative is 6 figures.

And I still have more surgeries to go!

I know I said I wouldn’t go there… but THIS. This is so wrong. Healthcare in America is messed up, guys. Even though my family doesn’t have the best insurance ever, we don’t have the worst, either. And it makes me so sad- for people can’t afford healthcare; that healthcare is so expensive to start with; that healthcare can bankrupt people; that the people in congress can’t see how broken this for-profit system is or figure out how to fix it; sad that when I got my diagnosis, one of the first thoughts through my mind was “How am I going to afford this?”

Yes, cancer is expensive. But that doesn’t scratch the surface of what it costs you.

 

 

Six Months Post-Mastectomy Update

Last Thursday marked 6 months since my surgery. It didn’t even cross my mind. I had just gotten home from therapy when I got a voicemail from the nurse navigator at St. Thomas congratulating me (I can’t remember if she used that exact word, but that was the gist of it) on being 6 months out from my mastectomy. I immediately burst into tears. I’m not quite sure why, because as I’ve reflected some over the past couple of days, I realize I should be celebrating. But in any case, my immediate reaction was lots of tears. I was also annoyed that this phone call came AFTER I left therapy and not before I walked in. Ugh.

I’ll skip the long philosophical ramblings about the passage of time and just say that it doesn’t feel like 6 months. It feels like years and years have passed. But the emotions are obviously still very raw, hence bursting into tears on a dime.

Here’s what I’m experiencing 6 months post-mastectomy and placement of tissue expander:

  • Tissue expander is still in place. It will stay there until I am done breastfeeding and have another surgery to replace the expander with a permanent implant. I do not have a timeline on this as it all depends on when I’m done nursing.
  • I have decided to postpone any further medical treatment until I am done nursing at the very least.
  • I still have quite a large numb spot on the back of my left arm and over my foob (fake boob). Knox, my almost 5 year old, thinks this is hilarious and will make a game out of having me look away and I have to guess if he’s touching me or not. A lot of the sensation in my arm pit is returning, though.
  • I still get random itching that I can’t scratch over/under my foob and on the back of my arm (over my numb spots).
  • I’m back to workouts. I would imaging that many people post-mastectomy are back to workouts much much sooner, but because of the pregnancy/baby, I’m just now easing back into things. Working out again has tremendously helped my mental health! It’s my goal to get in at least 4 30-minute workouts per week. Since starting to work out again, I get tightening/stretching/ mild pain over my foob, but I anticipate that will improve as I continue to gain strength back. I’m not sure if it’s a result of the mastectomy or the baby (duh- it’s both), but my upper body strength is really pitiful and I’m having to work really hard on things that I feel should be simple and that is frustrating.
  • I’m in therapy dealing with the emotional impact of everything, but feeling better and better.
  • I’m still paying off medical bills from everything. Since it’s the start of a new year, I have new bills now, too, so that’s fun. *sarcasm*
  • Read my post on other things I am doing here.
  • I’m trying to figure out a new normal and plan to return to work soon, although I’m struggling with this.

This is a life-long journey that I never expected to be on, and 6 months post-mastectomy is just the first of many milestones along the way. But I’m going to do my best to celebrate.

How to be a good visitor to mom and a newborn

The first days weeks months of life with a newborn are hectic, crazy, stressful. Babies don’t really care what you have going on. They just need things. All. The. Time. Diaper changes. Feedings. Burping. Clothing changes. Something else that only their tiny body knows and no person could ever figure out. They need all the things.

And in the midst of getting to know your new little person in your sleep-deprived state, everyone you know will want to come visit you. Because for some reason people love babies.

But there is a Good way to visit a new mom and her new tiny human. And there’s a Bad way to visit a new mom and her tiny human. So, in case you want to be a Good visitor and you are wondering how to accomplish this, I have put together a list for your reference. Just file it away until you need it, and perhaps come refresh your memory when you are ready to visit a friend or family member and their baby under about 8 weeks old.

In no particular order:

  • Do not “drop in”. Now, I know you (a sane, sensible blog reader) would NEVER do this to New Mom. But in case you ever thought about it…. Don’t. Ask New Mom what time works best for her. If you make these plans more than 3 hours in advance, you may even want to check back. A simple “Hey, I’m about to head your way. Is this still an ok time?” text or phone call is lovely. Babies change minute to minute and what  was good time today might not be good tomorrow, especially with newborns (who apparently can not tell time). It’s nice for New Mom to have an out. i.e. “Actually the baby just pooped ALL over me, herself, the bed, and up the walls, so maybe give me an hour or so to clean that up before you head over. k? Thanks.” OR “I need help cleaning up all the feces all over my house, please come right now!” kind of thing.
  • Ask if there’s anything you can bring when you come visit. Because ain’t nobody got time to run out for a gallon of milk with a newborn in tow. While you’re at it, meal trains are amazing and I want to open-mouth kiss whoever invented them. Be mindful of any foods that New Mom might be avoiding due to nursing or in general.
  • Do not assume that you will get to hold the baby. Be respectful and mindful that New Mom may feel a little Momma Bear and want to fiercely protect her little one. She is learning to bond, learning to feed, learning to soothe. New Mom might love some company, but may not want that company putting their scents (and germs) all over her snuggly newborn. Some moms may be totally ok with it. It’s ok to ask to hold the baby, but if your sole purpose for coming over is to hold the baby- just don’t.
  • WASH YOUR HANDS. 1 million times. It doesn’t matter if you washed them or sanitized them RIGHT before you walked in the door. I promise New Mom will feel so much better if she sees you wash your hands immediately before touching the baby. Don’t make her ask you.
  • Related: If you have a sniffle or a throat tickle or a slight cough and you think “Oh this will be ok. It’s probably nothing.”… think again. What is “nothing” to an older child or adult can be (quite literally) deadly in newborns. If you THINK you MIGHT have ANYTHING, just stay home until you are 100% well. This is especially true in the winter time when croup and flu spread like wildfire, but people get sick in the summer time, too. Also, there are some live vaccinations that can “shed”, so if you (or your children) have been recently vaccinated, you may want to check with New Mom first or wait a couple weeks to visit.
  • Do not wear scented lotions/perfumes. This may be more of a personal preference, but I want my baby to smell like a baby and not like you. I mean, I’m sure you smell great and all, but I don’t want to smell you when I sniff my baby’s head. No offense.
  • Help out around the house. Don’t ask. Just do. Fold a load of laundry. Put dishes in the dishwasher. Sweep or vacuum a room. You don’t have to clean the whole house top to bottom (although that would be SUPER), but even relatively little chores are so helpful when you can’t even remember the last time you showered.
  • Give attention to other children in the home BEFORE gushing over baby. New Mom hasn’t had as much time and the other kids are likely feeling a little left out (even if they are adjusting really well and love the new baby, extra special attention can only help). I’m not big on bringing siblings gifts. If you WANT to bring them, that’s probably ok, but I think more often than not, what they really want/need is to feel like a priority again and play time will accomplish this even better than a new something.
  • Try to be specific when offering to help. It’s hard for New Mom to think straight and organize her thoughts (maybe it’s just me….?), so “Is there anything I can do to help?” may be difficult for New Mom to answer. Instead, try “Can I fold this laundry for you? Where does it go?”
  • Ask her questions that are not related to baby or childbirth. For some reason, people are obsessed with knowing all the details of everything about baby from the birth to sleeping to pooping. New Mom might (probably) want to talk about something else so that she can feel like an adult human who is still capable of interacting with other adult humans instead of like a milk-machine who can only communicate with coos and tears. However, her brain may not be firing on all cylinders since she only got, like, 45 minutes of sleep in the past 3 days. Safe topics might include: shared hobbies, TV shows, the weather or most anything else you talked with her about before baby came along.

I think we all want to be the Good visitor. Hopefully these tidbits will help you when you find yourself getting ready to visit New Mom and her baby.

New Moms… what are some other things on your DO and DON’T list for visitors?

 

Call Me Crazy…

I’ve been so busy talking about life with a newborn that I haven’t updated on my cancer recently. I would say that’s par for the course in my life right now. My focus is most definitely on the baby and cancer is taking a back seat for now. I’m not sure if that’s me making an educated, well-thought-out calculated risk or if I’m in denial. My therapist says it’s probably a little of both.

I had an appointment with my medical oncologist at 3 weeks post-partum. So, I dragged this tiny little newborn baby into an appointment that I already didn’t want to go to. The office was particularly busy that day and I ended up waiting in the waiting room for an hour and a half past my appointment time. At this point, I was super angry. I’m sure the doctor was spending extra time with a patient that needed lots of questions answered. I’m thankful that person got the time and attention they deserved. But, I was running on no sleep, super hormonal, and in the throes of post-partum depression and here I was, sitting in an office to talk about my cancer. So, I gave up. I let the office know I was leaving and I walked out. I know what their recommendation is. They recommend starting hormone blocking therapy to reduce the risk of the cancer coming back. That recommendation won’t change and I’m not ready to do it, so I don’t see the point in sitting in an office to re-hash the same conversation.

I did, though, see my surgical oncologist for a follow up today. They performed a clinical breast exam and sent me on my way. Because there are no good ways to track cancer. There are no blood markers, no diagnostic images, nothing we can do to know if it’s spreading until it’s too late. A clinical breast exam will tell them if I’m having a local recurrence, and that is good because early detection of cancer in my breast does lead to better outcomes. Even though my left breast has been removed, cancer cells could theoretically be growing in the skin or any tiny amount of tissue that remained behind, or in my lymph nodes (which would still be considered local, depending on how far down the system it’s found). The chance of this is very small. They also check my natural breast, but the chance of me developing cancer in that breast is also very small (about the same chance as me getting cancer the first time) because it would be a new cancer, not this same cancer coming back. Eventually they’ll want to do a mammogram on my natural breast, but it’s pretty much useless while I’m breastfeeding.

What does not lead to better outcomes are other imaging studies (such as a CT or PET scan). They MIGHT catch something sooner rather than later, BUT early detection of a metastasis doesn’t lead to better outcomes. If I become symptomatic, then they’ll go looking. I can request scans if I want them, but otherwise we just wait (and do the clinical exams). Wouldn’t it be great if finding a small tumor on my liver or lungs was better news than finding a big tumor!? But it’s not. So that kind of sucks, but it’s what we’ve got right now.

The way I see it, I’m not doing nothing. I had a breast removed. That’s a pretty big something. From what we can tell, I do not currently have an active cancer. They removed all evidence of the disease during the surgery, so here are some of the things that I am doing to reduce my risk while I wait (that don’t include prescription drugs):

  • Eliminate use of plastics as much as possible. I have thrown out our plastic tupperware and replaced it with glass. The BPA found in plastics is a synthetic form of estrogen, which is a hormone disruptor. Because my cancer is hormone receptor positive, I am avoiding things that act like estrogen lest my cancer feed on them. We use glass or stainless steel for all food storage and try to only buy anything else with BPA free plastics.
  • Use of supplements that are known to fight cancer. I’ve personally added: tumeric (curcumin), vitamin B, Vitamin D, an Omega complex, and Spirulina in addition to my prenatal multivitamin and probiotic. I am still researching a few other supplements to determine their safety in regards to breastfeeding.
  • I am doing a mostly vegan diet (I aim to eat vegan at least 85-90% of the time, but give a little wiggle room) and gluten free (I also shoot for overall low-carb towards a ketogenic diet, but am still working on that one.) I don’t do any processed or refined sugars. Side note- read your nutrition labels, you will be SHOCKED at how many things have added sugars that aren’t “sweet”. I researched a ton of different diets because it makes sense that what we put into our bodies would impact how cancer can grow in our bodies. Vegan was the diet I landed on for now (and I’m having fun exploring this with new recipes!). I also am interested in a juice fast and juicing in general, but I’m not sure what that looks like while breast feeding, so I’m going to keep doing research on that. The jury is still out for me regarding soy products. I’m avoiding soy based products, like soy-based “meats” and tofu, but not strictly avoiding it on nutrition labels at this point.
  • Overhauled my health and beauty products. This is something I’ve been working on for a long time. I’m sure I still have work to do, but I am trying really hard to make sure I don’t put anything on my body that is a known hormone disruptor. This includes products like sunscreen, deodorant, shampoo, make up, lotions, etc. I’ve extended this to my family in things like safer body wash, diapers, and wipes. Additionally, I use natural cleaning products and avoid anything chemical where I can.
  • Breastfeeding. Breastfeeding is known to lower risk of cancer, likely because it  keeps hormone levels low. Low hormones are the reason many women don’t have a period while actively breastfeeding. Obviously this is not a foolproof method, but… because my cancer was fed by hormones, we want my levels lower. Which is why they recommend a drug that blocks estrogen. However, it seems crazy to me to suggest that I stop breastfeeding, which is naturally keeping my hormones low, in favor of starting Tamoxifen, which will synthetically lower my hormones…. Surely I can’t be the only one who sees how much of an oxymoron that is…?
  • I am beginning to research thermography as well. I spoke with a provider today who recommended that I wait to complete scans until I’m done breastfeeding as the increased activity in the breast can inhibit good, clear images (similar to a mammogram), so I will continue to research this as an option for the future.

My goal is to write more in depth about each one of these things in separate posts, so stay tuned.

I know that a lot of people think alternative medicine or not following doctors’ recommendations is crazy. If you’re one of those people, go ahead… call me crazy. That’s ok. Of course I’m scared. I don’t want this cancer to come back. I want to grow old enough to be there for my children. I definitely break down in tears from the anxiety and fear of thinking everything I put on or in my body is feeding the cancer and trying to kill me. BUT, when I take the emotion of out it and apply logic, it just doesn’t seem that crazy to live as clean as possible to stay healthy for a long time.