Tag: life after cancer

One-Year In the Clear Remission Re-Birthday: Thank You Letter to My Universe

One-Year In the Clear Remission Re-Birthday: Thank You Letter to My Universe

Dear Universe Thank you. Thank you, thank you, thank you. Thank you for this day, thank you for this life. Thank you for everything – all of it.  Today is September 27, my one year ‘cancerversary’ of my remission scan – my re-birthday. Which means […]

On Top of the World with First Descents: My 1-Year-Outta-Chemo Cancer-versary

On Top of the World with First Descents: My 1-Year-Outta-Chemo Cancer-versary

Life after cancer: Young, fancy and free A year ago last Wednesday – August 23rd – was my last day of chemo. The first step on the road back to normalcy. My unofficial return to freedom, to life. To life after cancer. My last day […]

Life After Cancer: A Masterpiece in Progress

Life After Cancer: A Masterpiece in Progress

Cancerversary: Reflecting on a year out

This month will mark the one year anniversary of finishing chemo. Tomorrow marks the one year of finishing round 5. When I think back on a year ago, I think about the whirlwind I was in the midst of. And I think how surreal it seems. Like, seriously did I really go through that!? Did that cancer shit actually happen? Life after cancer goes on.

I gotta say, sometimes it feels like a distant memory, a surreal dream. Nightmare perhaps. I have to look back at pictures to remember what it was really like. What I looked like. Remember what if felt like. Because, now, life is good. Now, I don’t look like a person with a story behind that extra short haircut. Now, I generally don’t feel like that person in recovery.

Now, the only visible reminders are my faint PICC scars on my inner upper right arm which very few people probably ever notice, and my short pixie cut. Which, to anyone who didn’t know, just looks like a cute short haircut.

Pixie cut

Pixie after cancer
I’ve been pixied

Realities of Recovery: The Ups and Downs

And truth be told, I put up a good front most of the time. I share about how well I’m doing and how good life is. Because mostly, life after cancer is good and I am doing pretty darn well. I’m getting paid to write – a dream I had but never thought would be a reality. I am a wellness coach and my own boss – another dream I kept putting off in the years B.C. (Before Cancer ;).

But almost a year out, the truth is, I’m most definitely still a work in progress. 600 hours of chemo ain’t no joke. My body went through so much. Chemo. Antibiotics. Hormones. Anti-anxiety meds. All sorts of crazy stuff. Not only did I lose weight, but I lost muscle. And though I gained the necessary weight back slowly, regaining my muscle and metabolism re-regulated is very much a work in progress. My hormones have thankfully balanced out and returned my cycles more or less back to normal, but after years of fake hormones followed by the intense stuff I went through pre-treatment and everything else that’s re-regulating in my body, it hasn’t been an entirely smooth process.

A post shared by Amanda Kelly (@akamandak) on

 Pic on the left: me before treatment, more or less depicting how I feel when I struggle through periods of insomnia. Me on the right: more or less how I feel about life now, even on the days I’m on the struggle bus.

Insomnia, fatigue, and brain fog

And then comes the most frustrating aspect of all: I still have insomnia. I still experience extreme fatigue. I still struggle with brain fog, otherwise known as chemo brain, like I am right now as I write this (case in point: the first time I wrote this sentence I wrote brain fog twice. there ya go). The latter are most definitely related to the insomnia.

So at this point, I am trying to figure out what’s really what – is the insomnia a lingering effect of hormones and nutrients in my body still being out of whack (very likely)? Or is it a deeper issue that goes back to what I experienced before diagnosis, that perhaps was an underlying cause of my lymphoma (also very possible)? Is it both? I have gone for extra blood testing and have been taking supplements to help sort these issues out, yet it seems it hasn’t yet had the desired effects.

Or could it be caffeine? While it may not help, I’m quite certain caffeine is not the underlying source of the issue. I’ve experienced insomnia on nights when I haven’t consumed coffee that day, or for many days on end. I cut coffee for months and it still didn’t really help the insomnia.

Life after cancer: The work in progress

And as far as the rest of life goes, I’m still very much a work in progress, figuring it out day by day. And there are many days when I feel like a failure. Like I’m falling short of my own standards, and the standards of being a ‘health coach’ – I’m supposed to have it ALL figured out, right!? (Wrong. Not possible. 😉

But in spite of the brain fog and fatigue I continue to push forward to the best of my abilities. Trust me, as a health coach, I do know all the things to do to help with insomnia. And for the most part, I do all the right things. And sometimes I still struggle. As a coach, I’m very much in this healing journey myself. Life after cancer is a whole new journey. I’m invested in this because I have personal motivation to keep working on becoming a better, healthier, more balanced version of me.

Progress not perfection

Sometimes I get frustrated that things aren’t happening more quickly, both in my life and in my body. So I just have to keep reminding myself of all the progress I have made in this life after cancer. And that it’s really not about being perfect or doing everything perfectly, because that’s not what life is about. It’s about progress. And this year I’ve been focused on rebuilding a better foundation – a stronger one upon which I can build an even better life.

I guess that’s the gift that cancer gave me: the opportunity to go back and refocus so that I could rebuild and create an even more beautiful life. A masterpiece. And masterpieces take time.

And as they say, beauty lies in the imperfections anyway.

Life after cancer
Me celebrating my friend’s bach with a wine tour, going on a solid 4.5 hours of sleep, an improvement from the previous night’s 3 hours!
Manifesting My Vision: The year after my vision board experiment

Manifesting My Vision: The year after my vision board experiment

What a weird start to the year I’ve had. We typically view January 1st as a clean slate, ripe for fresh beginnings. A time for resolutions and goal-setting. I’ve never been big on resolutions myself, because 1) people rarely stick with them 2) it’s a great […]

The 3 month mark – Life after chemo, Life after cancer, and a Thanksgiving where I have so much to be Thankful for

The 3 month mark – Life after chemo, Life after cancer, and a Thanksgiving where I have so much to be Thankful for

Today marks three months since I left the hospital for the last time – hopefully ever. Three months since I had the PICC wires pulled out of my arm. Three months of hair growth. Three months of freedom.

The Cost of Cancer: Part 2

The Cost of Cancer: Part 2

So the first part of my detailed account discussed the alternative approaches I took in addition to treatment in order to properly heal myself and mitigate suffering. When there is so little definitive information out there, how does one make the best decisions? Was all of this necessary? When it comes to life or death diagnoses, how does one make that judgment call? I still don’t have any definitive answers, but I experimented. I went with my gut. I’m here, and, while I’m still working on picking up the pieces of my life and putting them together, I’m doing pretty well.

Version 2
The day I lost (most of) my hair. Photo: Nikola Tamindzic

I realize these posts are more serious; less upbeat. It’s true that in most of my posts – both here and on social media – I remained positive and upbeat. That was 100% my reality this summer. I did feel better than most people told me I would. Fewer side effects – yes. I did manage to get out and about a bit between treatments. From the get-go, I knew I would make it. But, it would be a disservice to everyone to gloss over the less pleasant realities that patients go through – even patients who kick ass. Treatment was not in any way a vacation. It still did completely suck. This is also my reality. The two do not negate each other; having a smooth ride – all things considered – does not in any way minimize the difficulties that I did go through, and continue to experience. Even though I’m doing well, I’m not quite ‘back to normal.’ Here in Part 2 I detail the other, unavoidable, costs of treatment.

Medical Bills and Insurance

Insurance is complicated; medical bills are extremely confusing. I’ve never been here before. I’d never been to this hospital. I’d never really had to deal with insurance. The realities of all this are just starting to sink in. The social worker at the hospital was very nice, but ultimately next to useless. I didn’t even know the right questions to ask, and those that I did ask received dead-end responses. There was nobody to help me navigate. In June I received a bill for over $3k, and I had several bills for smaller amounts so I called the billing department to get clarity on my account. The balance showed just over $2k – nearly $1k less than the first bill alone. Apparently there had been an insurance adjustment of $950 between the time the bill was mailed and when I called. Great for me since I actually called, but had I just gone ahead paid the original bill, I would have lost $1k. No chance I would have gotten that back. This time I was lucky.

That call also clarified the fact that nothing in hospitals is centralized. Each bill came from a separate department, and each had to be settled with that particular department’s billing system. I hung up in frustration because I was beginning to feel overwhelmed. I also received bills with charges for multiple items, and bills for one item alone. Some were for tiny amounts, some not so tiny. One day I finally had the mental capacity to start sorting through them. I had a couple duplicates, so I started sorting through, paper clipping them together, and writing out checks. Why checks? WHO knows. I rarely write checks. But that’s what I decided that day, maybe because I could keep all the papers together in that moment.

Well, the next day I entered them all into excel, item by item. And as I entered them, I found duplicate charges – some of the smaller bills for single items were the same charges included in the larger bills. Wonderful. Just wonderful, for a cancer patient dealing with fatigue and brain fog. Again, I was lucky. I finally paid off the last of my bills a couple weeks ago (I hope!). My medical bills wound up adding up to about $12k since my insurance plan had a relatively high deductible – when you’re healthy and never go to the doctor and your company is small so doesn’t cover it in full, you don’t opt for the significantly more expensive option. Though I did get a discounted rate through the Livestrong program and Cornell, fertility preservation was also not covered. This is something I would love to change – if breast reconstruction is covered, how is fertility preservation not across the board for cancer patients? It makes no sense to me.

fullsizeoutput_11f6
The day I lost (most of) my hair. Photo: Nikola Tamindzic

Speaking of insurance, there were plenty of moments of frustration, especially in the beginning. Calls for approval, calls about coverage, calls about I don’t even know what. One episode in June was particularly bad. I spent over a week going in endless loops between insurance and the pharmacy and my doctor’s office, each saying they were waiting on something from someone else to approve a particular drug that was supposed to suppress and protect my reproductive systems. It was utterly maddening. I was frustrated, probably had some hormone situation going on as the previous injection was wearing off, and all I could think about was that I needed this injection to protect myself, and I wound up in tears numerous times. My stress levels were through the roof. It is not lost on me that it was immediately after this drama that I wound up in the ER with a fever and an infection from my PICC.

fullsizeoutput_11f3
The day I lost (most of) my hair. Photo: Nikola Tamindzic

Assistance

There is help out there, but it’s complicated to begin with, and even moreso when you’re tired and even reading a fluffy novel is too taxing on your concentration. I’ve done the research and navigating these charities is tricky. There are not a ton for young adults, and of those that do exist, many I do not qualify for, either because I have the wrong cancer or I’m not quite young enough. I found a couple, but just missed the deadlines. Cancer in young adults comes with its own host of issues; one foundation sums it up quite well in the name they’ve given their grant: Life Interrupted.

It’s not just the immediate costs of cancer treatment; it’s the interruption of income. The income stops, but the bills don’t. It’s the interruption of your career. And in my case, it’s the cessation of one career and the attempt to create a new one. And in any case it takes a while to get back on your feet. Disregarding the typical struggles of creating a new career for any random individual, cancer survivors have to manage fatigue and chemo brain. Jumping back into a full time job right after treatment was not feasible for me, nor would it have been advisable. All of this takes time. My life has most certainly been interrupted and disrupted. I did not financially plan for cancer. I was always healthy; medical expenses were never something I worried about. Maybe it was naive of me, but really what evidence did I have to work with, other than my past history of near perfect health?

Version 2
The day I lost (most of) my hair. Photo: Nikola Tamindzic

Life is Expensive

Through all of this, which began seven months ago, I had – and continue to have – my regular day to day, month to month expenses: grad loans, car payments, car insurance, to name a few. And since August, medical insurance out of pocket. And then there’s all the treatment-related incidentals like gas and tolls and parking and train fares and taxis and Vias to get to the hospital and doctor’s appointments. When you have that many, these costs add up rather quickly. Especially when you have no income because you can’t work for the precise reason you are going to these appointments. I worked as long as I possibly could, but the logistics of working simply did not make sense for me to be able to continue. And at the beginning of this whole thing, I felt pretty shitty. So it wouldn’t have even been fair to my students for me to continue.

Version 2
The day I lost (most of) my hair. Photo: Nikola Tamindzic

The diagnosis process is a whirlwind, with little time to consider the implications of what’s next. You focus on the next appointment, doing your best to quell the moments of panic and lift the cloud of uncertainty. I was lucky that things moved as quickly as they did. Appointments opened up out of the blue when there were originally none for a couple weeks. I got in before it got worse. But, when things move so quickly, you have to act quickly and make decisions. And you make these decisions in a scary, confusing haze of uncertainty.

My focus was on getting through treatment; my focus was on getting to my sister’s wedding in the best health possible. I did a lot of reflecting on my past and thinking about my future. I had fuzzy ideas that slowly became clearer and clearer and made vague plans, and things have actually been falling into place. But I did not have the wherewithal to plan months in advance. And certain things simply did not work out in my favor as I hoped they would. My next post will cover what life is like after treatment.

 

The Cost of Cancer: Part 1

The Cost of Cancer: Part 1

Cancer is expensive. That’s a fact. A few people have wondered about my use of funds on the yoga retreat I went on in September. This did cross my mind when booking the retreat – how it might look. The fact is, I didn’t use […]