Young Adult Survivorship / FDX

Thursday I had received the call I’ve had marked on my calendar for months. I have been formally added to the First Descents FDX to New Zealand in January 2018! Not many details have been released, other than the description on the site. I will post more information when I have it!

we’re setting our sights on the magnificent mountains and rivers of New Zealand! The name of our game this time around is primarily hiking and kayaking, both on the river and on the sea.


During my oncologist appointments last week, I found myself standing in front of a woman my age who was pregnant. She complimented my purse. Very conscious that we were two of three people in the room under 50 (Blake was on the other side of the room), I asked if she was there for herself or something different.

She was having a C-section tomorrow and needed to do final blood work to make sure things were in line. I eventually asked what her history with cancer was.

Five years ago, they removed a tumor from her ovaries that was larger than any of the kids she’s had. When they found it, everyone thought she was six months pregnant.

We moved from the waiting line, to the infusion waiting room, and gushed so openly and so bluntly about the details of our diagnosis, surgeries, the unpleasant complications, like we were old friends catching up.

I told her that her initial doctor’s recommendation of a hysterectomy, through her journey to being on the eve of her 4th child, gave me hope that I haven’t been robbed of my chance of having kids.

At 1:59, she had to leave the waiting room to run across the street for an OBGYN final check up. This round of appointments lifted my spirits much more than I had anticipated!

July MRI Results

Hello! I quick post, as I’m battling an ongoing headache (I think the heat is drying me out).

I had my follow-up MRI today. In January, my CT results noted enlarge lymph nodes in my pelvis. My MRI results described no change in size in my node. While I was hoping they would have returned to a normal size, my oncologist assured me it is good news the size hasn’t changed, and that my body might just have larger nodes due to the treatment I’ve received. She felt good enough, in fact, that she will only have me do blood work in January, and is moving my annual CT scan to July.

So this is good news! I can move forward to next July without worry (pending January lab results), and will then be just 6 months shy of my 5-year cancer-free-iversary.

Conversations with Strangers

Lately, I’ve been experiencing glimpses into who a used to be. A younger, innocent, more naive me. A me not in my 30’s. Occasionally I’ve attributed this to maintaining long-term friendships and seeing old parts of me reflected back, but I’m starting to think it’s this new thing I’ve been doing.

Last Wednesday, I was at the grocery store to pick up a few things to get us to the weekend, and throughout my short visit I had three meaningful relationships with complete strangers.

The first was the friendly pizza sample lady, aka “the top seller in the region” as she boasted. Who, after a few connections shared some extremely personal health details she is worried about. Another, in the checkout lane was a dark man, wearing a leather hat, with even fewer items in his cart than mine. He asked me to read the price on a WWI magazine to him. From there, we started talking about the civil war and some other facts I had recently learned. Then, as I was checking out, I talked with the cashier, a junior in high school who was stressing about the ACT and starting to face the realities of growing up.

So what was it that lead me to really start talking with these strangers. I think back to my 20’s, and I was so open. So, happy.

I’ve started a new supplement / health program. My first two weeks I shed 10 pounds (and have kept them off). I’ve had more energy to finish chores. I feel sharper and clearer at work. I’ve been more happy and goofy in all aspects of my life, apparently even at the grocery store.

With my health history, I’ve tried several health trends. I was ‘athletic’ through high school and college. I got into distance running in my mid-twenties which led to a lot of knee and hip pain. I switched to a diet containing mostly juice and fresh vegetables when I was diagnosed, which left me weak enough I could hardly play sand volleyball, and led to sharp pain in my joints. I got into essential oils, and found only limited results compared to the prices charged. I have a cabinet of multi-vitamins and probiotics, which never really made me feel better, but did cause my pee to turn neon yellow. I spent almost a year home-brewing my own kombucha, and then read about how dangerous the bacteria growth can be, on top of not really feeling any different. Earlier this year, I was practicing fasting days, which usually involved me curling up in bed by 8 pm with no energy.

Now, just a week shy of starting this program, I can feel and see a difference. When picking out outfits, belts fall from my waist to my hips, skirts I ordered online that I failed to return after deeming them too tight actually fit.

So what is this program? From a high-level, it’s meal replacement shakes 6 days a week, and a cleanse day once a week (you don’t have to strictly adhere to this program). While being able to pull back on calories is a major player in the weight loss side, the program is about feeding your body nutrients to keep it balanced.Many studies are testing the quality of foods we eat now, and finding they just aren’t as rich as they probably once were. This program strives to re-add these missing nutrients. Throughout all my health endeavors, I’ve just never been able to get it right on my own. All these healthy things I thought I was doing weren’t making me feel any better.

The cleanse days are to give your system a rest to detoxify. Every day, there is an “elixir” – a shot of nutrients to feed your system. Sources of nutrients is important to the company, with the back of the bars boasting the products came from “happy cows”. There are bars and snacks to eat throughout the day to stay satisfied.

Are the product perfect? I don’t think so. But they better than me eating pizza and mac and cheese and adding a side salad so I can tell myself I ate something healthy. Do they have sugar? Yes, but less than a single-serve container of yogurt, and many granola bars. Do they taste good? I think so! But I’ve never been one to hop on board with a supplement/shake program like this.

It’s also been a burden off my shoulders to not worry about food. Getting groceries, planning recipes for every meal of the day. Prepping leftovers. Products ship right to my front door on a recurring cycle. I don’t get distracted by junk food at the grocery store, and know exactly what my budget is for the month. It keeps me accountable to not eat snacks throughout the day. If anything, it’s let Blake and I focus on enjoying our one meal a day together. We actually get excited to pick something and cook together, or cherish something new at a restaurant. I savor food, rather than trying to just satisfy hunger.

I would highly encourage anyone looking to feel better to consider trying this system out. Please reach out directly if you are interested!

I do have a website through this company to order from (prepare yourself for some tacky marketing pieces here). But please contact me first prior to ordering anything! I want to help you get the best deal and setup for your first go-round. Learn more and place an order online.

Update – The Swollen Nodes

I posted earlier this year about my CT Scan results not being great. I set an appointment with my general practitioner earlier in January. Since then, I’ve gone through several follow-ups, and they found abnormal cells in my cervix, which hopefully explains why those lymph nodes were swollen in my scan – they were fighting off these new cells.

I had those cells frozen, using Cryotherapy. Literally, they put a tool inside of me, froze me for 3 minutes, rest for 3 minutes, and then re-freeze again for 3 minutes. The second round wasn’t as painful, all the cells were killed during the first round. I’ll have a follow up in 3 months, but this procedure has a 90-95% success rate.

I’ve been healing for the last 3-4 weeks. It’s a pretty routine procedure; I drove myself there and home, no fasting, no prep. However, it’s affected my spirits much more than I thought.

This condition is common in women who went through menopause – which I did when elected to take protective drugs during chemo. It’s also common in people who have immune deficiencies – which I did when my immune system was destroyed by chemo. I’ve had to carry extra “supplies” with me this entire time, reminiscent of my colostomy bag.

Since the procedure, I’ve had several dreams (nightmares) where I had a colostomy bag again. In all occurrences, it was leaking. I was re-experiencing the horror of seeing my human waste saturate the sticky bandage on my stomach, the sting of having stomach acid sit on and erode flesh, and the panic of not knowing where to get more supplies.

Old memories since have haunted me, specifically one of the first times I went back home to Lincoln after surgery. I hadn’t quite gotten the routine of managing my colostomy supplies, and early one Saturday morning I had a catastrophic leak. With no pharmacies in Lincoln carrying supplies, I had to jump in my car with a roll of paper towels and drive an hour to Omaha to my parents house. By the time I got there, my bag wasn’t even stuck to my skin any more because the bandage had gotten so saturated. I had wads of paper towel held to my stomach to collect the constant stream of shit spewing from my stomach. I knew my parents were out of town, but we hadn’t realized the garage pad on the house had run out of batteries. Frantic, I ran around the house testing all the locked doors, before having to punch a hole in the front door screen to get in.

By that time, my waste was uncontrollable. I had shit running down my body, soaking my shoes as I ran from the back of the house to the front.

Trama.

This recent minor procedure put me in a situation where I just feel sick again, my body is failing, and my own cells are trying to destroy me. I wonder if I hadn’t had cancer, if I would have had this either. If the side effects from chemo didn’t align to cause this abnormality.

Although I’m only 3 years out from finishing treatment, it feels like a world away. Then things like this happen, and cause me to question if my body will ever be recovered.

My general practitioner follow up is in June, where they will repeat a pap. My next oncologist appointment is in July, where they will have me do an MRI to track my nodes. The timing works out well; if these new cells where the problem, and my pap is clean, my nodes should return to normal.

If my pap is clean, and they have’t returned to normal size, or worse, grown, that might be a problem.

FDX Update… 2018!

Hey everyone! It’s been awhile, enough so that people have stopped asking about my trip. So I thought it appropriate to post an update!

In January, a few of the First Descents 2017 trips were posted. There weren’t as many as I was hoping, and the only one I was semi-interested in was to the Northern Italian Alps. I researched the agenda, continued to check the page, and ponder it for about a month. It sounded great, but not as exotic as I would have hoped, and like a trip I could take on my own. Though I couldn’t define exactly where I wanted to go, this one just didn’t quite feel right.

After about a month, with no new trips being posted, I talked myself into signing up for this trip to Italy. I could start planning, and start getting excited. I went to the website to sign up, and it was full!

A little disappointed, a little relieved, and a little panicked, I had to resolve that it might for the best, and something more appropriate would be posted later in the year. I resigned myself back to routinely checking the page for new trips.

A couple weeks later, there were still no new trips posted. But an updated sentence that they are actively planning a trip in 2018 to New Zealand! I jokingly emailed the organization, asking if I could get put on a wait list for this 2018 trip. Sure enough, they have one started!

So, unless something amazing gets added to their 2017 line-up, I’ll be making plans to visit New Zealand in 2018! I’m a little disappointed to not be taking the trip while I’m 30, but get to look forward to it for much longer.

Thank you so much again to everyone who supported me on this goal. It’s truly amazing how much love I’ve felt over the last year!

FD Moab Update

I also want to plug in a link to read about one of my Moab Cancer-Camp friends. She underwent her 3rd(?) brain surgery earlier this month, and her husband and her have been sharing such beautiful posts all week. Check it out here!

I saw a bee

In January, over lunch, a bee flew and bumped into my driver-side car window. In January. I can’t stop thinking of the oddity of a bumble bee in Nebraska in January.

I’m one to always say, pay attention when coincidences align, and small details follow you. They are generally trying to tell you something.

In response to my less-than perfect CT Scan results, I retrieved an old bracelet from my dresser and put it back on my wrist. The one that was given to me on my birthday when I was going through chemo. The one the waiter took off his own arm and put on mine as a reminder of strength and love from one survivor to another.

Coincidentally later that week, the string bracelet that was put on my wrist on top of a mountain by another survivor during my Moab First Descents trip fell off. Symbolically, this is supposed to be a good thing, meaning I no longer need spirits to protect me. It should be a sign that makes me ecstatic.

Maybe it’s because of the timing of putting a more permanent bracelet on, which makes it seem like it’s more of a “bringing in the big guns” alignment rather than a cleanse of the added forces that have been following me around.

I had a follow up with my general practitioner about some symptoms I’ve had for a couple months. The CT Scan results pushed me over the edge of being able to put concerns at ease. At first, she brushed off my symptoms as nothing out of the ordinary. After talking a bit more, she wanted me to get an ultra sound to get a clearer view of my pelvic region.

I’m hoping it’s just scar tissue that is continuing to interfere with my body’s normal functions. But I can’t help but think of this scar tissue slowly growing. For lack of a better comparison, taking over my lower region like a cancer.

The day I saw that bee I was between appointments, heading to the women’s clinic for my ultra sounds and to sit amongst all the young couples who are expecting.

A couple quick search results yield mentions of bee’s strong ties to fertility. Making sure your life is fertile by enjoying the “nectar of our efforts”. One specifically calls out:

“Bee reminds us to take the honey of life and make our own lives meaningful and fertile.  In other words, bee tells us to enjoy what we do, whatever it may be”

First Descents announced three of their trips for 2017. One in particular I’m considering; a 10-day, multi-sport adventure in the Italian Alps. The main reason I’m hesitating, is because I was hoping for something a little more out of the ordinary. I could see myself planning a similar trip on my own to a similar location. I wanted my FDX trip to include something that would push my own limits just a bit more.

This Italian Alps trip would land me back in the states with less than a month until my next 6-month check in, which will now include the MRI to verify the size of my lymph nodes.

Maybe all these signs are telling me to embrace these next six months, because my next results might change my life for the worst. With my bracelet set to arm me with beefed up protection (note that it’s a dainty piece featuring several pastel jewels), and the bee to tell me to enjoy the nectar as it flows right now.

Then again, other bee meanings focus on setting dreams high and fulfilling them. The bee tells us to move past our physical limitations.

 

Technically speaking Bee should not be able to fly – it’s designed all wrong aerodynamically. From a spiritual perspective this speaks of our limitations and how to move past them successfully. It’s doubtful that Bee knows it shouldn’t fly – it simply DOES, and so can you.

The bee is here to tell me keep pursuing what I dream of. My beefy bracelet will help remind me of where I’ve been, and that I continue to move past those limitations. I know the survivorship odds, but I will simply BE HERE, and enjoy the nectar while I’m doing it.

The bee is here to represent both of our atypical physical characteristics, and our abilities to go against what science dictates.

My 3-Year Scan Results

Wanted to send out a quick post on my CT Scan yesterday. While it wasn’t the good “everything looks great here” conversation that usually happens, I’m trying to keep a rational head.

Several lymph nodes in my pelvic region had increased in size since the last scan. It wasn’t enough to order immediate follow up, but it was concerning enough that they will have me so an MRI in July rather than the standard blood work results.

Sometimes lymph nodes get inflamed when they are fighting an infection or other bad stuff in the budy, so I’m convincing myself that my system is just doing what it’s meant to do to knock out something existing in my body.

From a cancer perspective, often time lymph nodes are the first indicator cancer has spread, as the cancer cells get into the nodes and start growing. So, growing lymph nodes could mean growing cancer.

I’ll simmer on this for a while, if I do start feeling very sick or tired like I’ve experienced in the past, I can ask for a MRI sooner to make sure things aren’t getting out of control.

So, not the best news I was looking for, but nothing life-altering here.