When I was in high school a friend of mine had a t-shirt that said something to the effect of “when life gives you lemons squeeze them into a squirt gun and shoot life in the eye.” It must’ve been more succinct than that, because that would be a lot of text for a t-shirt, but it always made me laugh.
Life gives a lot of lemons. Lots. To every one. And some are peak season, lots of sugar and just a little bit sour. Some come in 5 pound bags.
People spend a lot of time comparing their problems. Some people have problems that only seem like problems because their neighbor hasn’t had to deal with it. Some times people have problems that shake the very foundation of their existence as a human being.
I’m two years from being 30 years old now. It’s the first year where I really feel older. In this year nothing has changed, and yet so much has changed.
I’ve gained a new perspective into how other people live through hosting our exchange student. It’s been challenging in ways I never imagined. That seems to happen to me often.
I’ve been declared “cancer free” for the zillionth time – a feeling that never feels good enough because there is always an “if” lingering in the background.
I’ve connected with friends on a level I’ve never experienced before. I’ve signed up for volunteer positions that require a lot of time and dedication.
I’ve researched career options for my future, and settled (and re-settled) on what I (maybe) want to do with the next few years.
I’ve made decisions that will impact little G for the rest of her life.
I’ve faced rejection and abandonment.
I’ve struggled, and watched people I love struggle. The latter having affected me more emotionally than the former. I’ve been accused of caring too much, but I think it makes my experience in life more human. I don’t only get to experience my joy and pain. A blessing and a curse by some accounts, but I like who it makes me.
I’m laughed and cried and wondered and analyzed and over-analyzed. And despite that I’ve made good decisions and I’ve made bad decisions and I’ve loved deeply and been loved even more.
And it’s always the same, and yet nothing has changed. I thought when cancer took over my life that I would never be the same. That I would never experience that same day-to-day joy that used to saturate even the tiniest moments of humdrum life. And yet I find myself thinking “I love my life.” And it’s true. It’s coming back. Light, or happiness, or maybe just the peace that comes with acceptance. Satisfaction is permeating my moments again, and it’s something I never expected. Certainly not every moment, but I don’t think life was meant to be lived in a constant state of happiness. But those little moments can be happy again. Snuggling in the same spot where just two years ago I told my husband I had cancer – it’s a happy place again. The couch where I spent months laying in pain and exhaustion has regained it’s rightful place as “official family gathering spot” (though it does serve nap duty on the side). I can drive to Wegman’s without having a panic attack. Lack of regular panic attacks is definitely a reason to celebrate!
After all of that, I’m forced to remember that perspective often means more than the experience itself. The lemons in my life might be unbearable for others, or might seem like #firstworldproblems to others. I’m glad to be getting back to my equilibrium. An equilibrium that now sees cancer as something that can be conquered and the ability to appreciate, but not stress over, the less than enjoyable bits of life that make the good bits even more valuable.
I rolled my eyes when I read about chemo-brain. I couldn’t begin to fathom what it could possibly mean. “Impaired memory.” I’d experienced my fair share of mommy-brain moments, but nothing could prepare me for forgetting some one’s name the instant they introduced themselves. So, for your reading pleasure: a list of things I – a 27 year old woman – struggle with after chemo.
1. Recipes. There is a certain finesse to following a recipe. A quick read through should give you the gist, so that you can then start at the beginning and have a good idea of what’s going to happen. Not me. Not any more, at least. Long gone are the days that I can read a recipe online and recreate it in my kitchen at a later date. In fact, the only way to make sure I’m going to not screw up a recipe is to re-write it, by hand. I guess it saves on printer ink.
2. I was never fantastic with names, but pretty good. I could remember the names of people I’d met, or characters from a show I enjoyed. Now? Forget it. If I don’t write that person’s name down it’s going to be gone in about five seconds. I usually abate this problem by asking them to add me on face book, but it has lead to some fairly embarrassing face-to-face challenges. There’s nothing more frustrating than knowing some one, and not being able to remember their name.
3. Productivity. I’ll be honest. I wasn’t incredibly productive before my cancer diagnosis. Mostly because I was tired all the time. So I guess there has been some overall improvement in this department, but I am so easily side tracked. I lose half of my day when I start doing the dishes and realize I can’t find the sixth part of the damn onion chopper so I decide to organize a draw which leads to emptying the entire pantry onto the kitchen table which leads to ordering pizza for dinner. #doesntmattergotpizza
4. Time. I find it difficult to measure the passing of time. Never mind that I am still almost constantly tired (especially if I stay up late… like I’m doing now…), but my day just disappears. Most of my friends know that I keep a timer on my phone. It goes off every day at two o’clock. Mostly so that I know that it’s two o’clock. That means I should eat now if I haven’t eaten yet. That means B-man will be home from work in a few hours. It means I should take my medicines if I haven’t. It means my day is slipping away. It means my daughter is running around singing a song about two o’clock because my husband did it once.
5. I’m a rude friend, or a lousy acquaintance. Picture this: the magazine photo of a fun motherhood. Coffee with a friend across the kitchen table while the kiddlets play in another room. And yet, I can’t enjoy it as much as I would like to because the second I want to respond I have three choices. First, the rudest option, interrupt and say what’s on my mind. Second, stop paying attention to what my friend is saying and repeat my thought to myself over and over again and hope that it stays relevant to when I get a chance to say it. Or third, forget my thought and come across as uninterested. With close friends they have been fairly patient on my toddler-level conversation skills. With every one else I just nod and smile.
6. I have to write everything down. And by “write down” I mean literally, with a pen, on paper. This is actually my cure-all. From grocery lists to daily tasks: if it’s written down, there is an incredibly improved chance that I will remember it. Thank goodness. The hard part here is that I then end up keeping a ton of lists, and an actual paper planner (I’ve actually had people ask me “what’s that” in regards to my planner. Bite me people. It’s not THAT crazy!).
7. There’s probably a million other things, but that’s the joy of chemo brain. Ignorance is bliss and I’ve completely forgotten. And that’s okay. This is where I am, and nothing changes over night.
It’s not glamorous, most people don’t understand that some one my age could actually struggle with most of this, and people always say “but it’ll get better, right?” The answer? Supposedly. It can take 4-5 years, and not every one regains complete function. Until that point I will be forcing myself to do things I don’t feel confident in doing (like writing!), and keeping a mountain-sized-pile of lists.
If words could describe my heartbreak right now this post would write itself. It’s easy to define black or white, but grey is a complicated thing. While my own words are faltering I’ll hind behind ambiguous phrases and meaningful quotes.
I’m still exhausted, though the stress, tension, and fear seem to have subsided. I’m trying to focus on the exciting things going on this summer.
B-man and I helped in planning a big surprise party for my neighbor last weekend, which was a blast. I felt sore for two days afterwards. I’ve been anxious about doing too much, worried about over-exhausting myself. But the soreness of over worked muscles is oddly gratifying.
We will be attending a wedding on Brandan’s side of the family, then vacationing in Maine for a week. Traveling will be nice. I love driving. I love listening to Brandan read to me, and Ginny pointing out the things she finds interesting along the way.
We’ll also be attending a wedding on my side of the family. They pull us back to Tennessee, and it’s a nice feeling. Some times I’ll drive down route 17, or all the way out to 29 and I can feel the tug. Just keep driving. My soul yearns, how silly of it to forget that my heart belongs in Virginia now.
My hair is growing back. It’s about half an inch long, and has been noticeably growing for about 2-3 weeks now. I’m curious as to when I’ll feel comfortable going out in public without a hat on. When I look in the mirror I just see a sickly version of myself. Not that a hat makes that much of a difference. Self-esteem is a mercurial emotion. Perfectly fine until a sideways glance at a window force an unwanted reflection on me. The circles under my eyes more pronounced, despite copious amounts of sleep. My eyebrows have thinned, and the expressions I see aren’t mine any more. It’s weird and hard and annoying. But I guess if the most I have to complain about is how uncomfortable I am with my body, I’ll see that as a win. I’m not dying. So I’ve got that going for me.
It only took one needle, and the IV for my surgery was in. That’s a first. It’s because they were able to use a smaller needle, since they didn’t need to use any contrast for the port removal. The nurses all remembered me, all asked about Ginny. I’d forgotten that I had been there twice before. Those early months of doctor visits and procedures have all run together into one nightmare of a memory. This time I remember the tent they put over my head to keep me from breathing on the surgical site. I remember the almost painful pressure on my collarbone as they removed the catheter. I moaned a lot but didn’t ask questions this time. Conscious sedation. I guess it’s less dangerous (because you keep breathing for yourself)… but a strange thing to experience. The port is gone. I now have two lines, like an equal sign, on my chest. One line to put it in, a second to take it out. It is sore and itchy, but I know it will be better in a few months.
Moving forward I will have one scan every 3 months for the first year. Then one scan every 6 months for the second year. Then I will have one scan a year for three years. If I make it that far without a relapse I’ll be labelled “cured” and sent on my merry way. It’s just a label though. I feel good now. My confidence is growing every day. Confidence that my body with strong, that the medicine worked, and that the biggest of my worries is my hair. Perhaps it is a false confidence, but it helps me sleep at night, and when morning comes that’s all that really matters.
I relished in all of the compliments I received for my early posts about dealing with cancer and the stories I shared. Unfortunately my drive for creative writing has gone the way of my energy: absent, but certain to return.
As distractions from my myriad of symptoms I spent those first months laying in bed replaying childhood memories, focusing on the little details to include that would make it more real, more appealing. But now I don’t lay in bed and ponder. My brain is too stressed out for idol thought so I lay in bed and wait for my medicine to start working. It carries me off into a dreamless sleep where my legs feel heavy but my anxiety disappears. I hate it, but relish in it at the same time. Brains are incredible things… and mine is struggling to keep it together lately. Facing mortality does funny things to one’s brain. But I digress.
I had my last chemo 7 days ago.
The first three days afterwards were spent sleeping. I honestly don’t remember them, family, friends and my sweet husband took over playing mom while I drifted in and out of wakefulness.
The next two days still involved heavy napping, with the added misery of nausea, leg cramps, and intense intestinal pain.
My finger tips are numb and will likely take a year to repair the nerve damage.
My hair is growing in… and still falling out. I’d guess that in about four weeks it will stop falling out. So that’s nice.
My blood levels are all messed up, and my pulse has been between 120-140 for the last few weeks. Normal is between 60-100 beats/minute. It makes me feel like I’ve run a marathon after just walking around the kitchen.
I’m anemic. It’s exhausting.
The bone pain has returned, but some how knowing that when it leaves it will be gone forever makes it easier to handle.
Some foods taste funny to me now. I thought that since I didn’t have this in the beginning it just wouldn’t be one of my issues. Wrong… it just waited until the last cycle.
Steroids makes me hungry. Eating hurts. It’s a vicious cycle. Thankfully, after a week, the pain upon food consumption has subsided.
My electrolytes are off, which has resulted in very painful, intense cramps in my legs – particularly at night. I’m using a supplement to help with the off-balance, but to be honest this was the last straw that made me realize drug-induced relaxation was for me. After weeks of waking up every few hours with a charlie horse it was time, and it helps with the anxiety, the cramps, the nausea and the stomach pain…. and the not sleeping. That’s five birds with one tiiiiiny little stone.
I’m feeling hopeless. It’s weird, as every one gets really excited and humans have this universal “happy dance” that seems to happen every time I see some one now. “Last chemo! All done! Yay!!!”. And I hate to be a downer, but honestly… I’m not done. I’m done taking the medicine. Now I have to recover from the disease, and from the medicine, and from 5 months of not doing anything.
I can’t open tough jars any more, I wager with my bladder to hold on just a bit so I don’t have to walk up the stairs again. I can’t pick up my daughter. I’ve got a bunch of mental conditioning to do to get over my new and intense visceral reaction to the idea of going to the doctor, having blood drawn, or the sweet nurses who helped me through this. Just the thought of a needle makes me want to hurl. Weird… because I’m not afraid of needles. Just sick of them.
I also know this isn’t over. I still have to face it for the rest of my life, in particular the next two years when I get scans to check and see if it’s come back. And when it hasn’t come back I have to worry that every little ache or pain is cancer.
It’s terrifying. I can’t think too far out or the “ifs” become overwhelming.
So… I know I’m just a bucket of joy. lol.
Today was the first day that the relief of being down with chemo hit me. I stood on the landing and the relief washed over me. Each step and each second is a little bit closer to finding normal.
I’m trying to be happy. I’m trying to move on. It’s just a lot harder than people seem to realize, and I feel like a whiner for not being oh-so-super-excited like every one else is for me.
Update: We’re in cycle 3 now. I had my infusion on Wednesday, felt sick last night, but am feeling… okay today. My symptoms are relatively mild, except when they suck.
In other words, I’m tired all the time, and occasionally I feel really sick, but I’m mostly just tired. My nausea set in a lot sooner this cycle.
My infusion went smoothly. The nurse was willing to use the IV benadryl (instead of the pills), which actually resulted in less benadryl, and that combined with some caffeine allowed me to be awake a majority of the time. Some people say I should rest, but honestly… the steroids mess with my sleep schedule enough that if I can avoid naps and sleep at night, when normal people sleep, that is better for my family. I didn’t have any reactions, which is an improvement, and was able to finish an hour early.
There are things that don’t escape my mind, they can’t. They are ingrained in my thoughts and how I see the world.
I have cancer. It is a scary illness that kills people. There is no shame in talking about having cancer. There is no shame in seeking treatment.
If I had diabetes I would have no shame in trying to share my experience, seeking treatment, or discussing preventative measures.
If I had high cholesterol would there be shame in taking medication? I doubt it.
But why then, is there so much shame in treating depression?
I’ve been writing my blog for 8 years. Eight. Years. Yet I’ve never mentioned my battle with depression. I was scared of what people would think, or how I would be perceived. But I’ve realized how helpful blogging through my current diagnosis is, and I hope that by rectifying my silence I can help others who are struggling with the pains I am all too familiar with. If you’re not interested in that, scroll on down to the bottom.
I think there is a misconception that people are in control of depression. Unfortunately, we don’t actually have much control over our hormones. Just like cholesterol or diabetes can be controlled by diet, until they can’t. Being depressed is not labelled “depression” until it is something an individual is no longer in control of.
As a sophomore in college I felt like a prisoner in my cubical of a dorm room. With enough room for a twin bed and desk, I spent a majority of my time there. There – in my black hole. The place that pulled me away from things I’d previously enjoyed. The place I contemplated things that left me in depressed stupors. The place I contemplated what would happen if I disappeared.
I think the reason I’m alive today is because of my excessively guilty complex. Every day I walked over a pedestrian bridge, and every afternoon I walked over it again. I would pause and look down at the traffic, then continue to my black hole – it pulled me in. Then I would think: Jumping in front of a big truck would be easy. Instant. But it would be selfish, careless, messy. I’d be forcing a stranger to kill me, I’d be forcing my family to suffer. Motivated by that guilt for thinking such a selfish thought I’d wallow in hatred. So selfish. So dumb.
But aside from the guilt, I felt nothing. Numb, disconnected, alone, and at the best of times I felt outcast. Why couldn’t I connect with people? Why am I 20 without a single close friend or significant other to my name? Why am I constantly tired? Did you know exhaustion is a symptom of depression?
I wish I could describe what feeling numb really feels like. It’s like standing in the cold October rain with no desire to move. It’s like standing at the edge of the road, tempted to step too soon. It’s like forgetting that any one, any where loves you.
Months of the numb feeling went under my radar, I didn’t realize I was feeling this way. I did realize that I wasn’t feeling right though, and eventually this numb feeling lead me to cutting myself. Not in a “I’m trying to kill myself” way. But I want to feel… to feel anything. A physical representation of the internal pain. The pain no one else knew existed. Four lines on my body that kept me feeling human, in the sickest way possible. I’m very lucky – those scars have completely disappeared, and I am not constantly reminded of that lapse in judgement, that cry for help.
A few astute friends, who I’d dusted under the rug as acquiescence, rescued me from myself, from those hormones I didn’t control. In the process I likely ruined those relationships, something I regret every day. But they got me the help I needed. I was put on medication, which allowed me to learn coping techniques in therapy, and those techniques have since served me very well. I did have a relapse, but thanks to my supportive husband I was able to manage it quickly. And whose to say I won’t need that kind of help again. Heaven knows I have plenty of reason to be depressed.
All of that to say: Depression nearly killed me. Just like cancer is trying to do now. Depression kills people every day, and it isn’t something that should be hidden in dark lonely nights.
If this resonates with you, in a way that you know it shouldn’t: don’t be afraid to get help. Don’t be afraid to need some one, or to need medication, or professional help. We treat so many other illness with supportive communities, and depression should be no different. No one deserves to suffer alone. There is hope. Depression is not the end, it’s just the precarious stepping stone in the middle of the creek.
The problem with depression is that is skews reality, and leaves us alone and dependent on our own perceptions. When your brain is running on off balanced hormones the difference between reality and perception can be immense. The world is no darker or brighter today than it was 7 years ago, but my ability to perceive reality has improved immensely.
I think people are often surprised by “how well I’m handling cancer”. I hear that a lot. Perhaps it’s because this is not the first time I’ve felt like my world was ending. Even more so, perhaps it’s because I know that I am still in control of myself. I can still see the beauty around me. In my snuggling toddler or my perfectly organized linen closet. The most helpful thing I have right now is steady support. The people around me are optimistic that I will do well. So despite my brain telling me I’m fighting a losing battle, I realize my perception is far from reality – and I can adjust. Like I’ve said before: it’s easier to feel positive when the sun is out.
I’ll have my PET scan to check my progress in about a week and half.
I’m scared of what that scan will show. My cancer turned asymptomatic before I started chemo, so I have nothing to base my progress on. I can’t feel my tumors. I just hope they are dying.
Some nights I lay in bed and wonder if I’ll get to see my daughter grow up. Those are scary nights.
My doctor said I’ve likely had cancer for years. Follicular lymphoma that transformed into this aggressive form. The numbers for this are not quite as hopeful – not exactly terminal, but not 90%. It’s also scary to look back and wonder how long I’ve had cancer for. How much sooner could I have done something? How much of this is my fault?
When I get upset, I mostly just feel mad. Mad at this stupid senseless illness. Why can’t my body just work like it’s supposed to?
Some days I think I might be getting depressed again. It’s not like that would be surprise – there is definitely something in my life worth being depressed over. But I can’t linger there. So instead I clean my house. It keeps me busy when I have the energy, and gives me something to feel accomplished over.
We’ll lay on our bed and I’ll run my fingers over his prickly beard and explain that I need him to live at least one day longer than I do. You see, I can’t imagine wanting to be alive with out this sweet man. He nods and points out that women typically live longer than men, but he promises to do his best. In our hypothetical world where we choose our deaths he’s willing to live a little without me to make me happy – though he points out that he would be rather unhappy with out me. I’m mad about this man. I want to spend the rest of my life with him. He gives me reason to live, he gives me reason to fight.
The day after Christmas, 12/26/2013, I set my phone down in the kitchen. My cheeks felt pallid, I could feel my heart… faster… or maybe slower… I don’t know… I shouldn’t feel like this. Ginny sat in her green chair with an episode of Micky Mouse playing in the background as Brandan sat at his desk. I laid down on the bed and asked him to come snuggle. My fingers on his scratchy beard, I repeated what the doctor had just told me: “I don’t have kidney stones. I have several masses in my lymph nodes. The largest is the size of a tangerine. 7 cm.” I held up my fingers to help my metrically challenged husband. “It’s called lymphoma.”.
Lymphoma is a type of blood cancer. I think people assume blood cancer = leukemia, I may have been guilty of that, but thanks to hours upon hours of Googling I’ve learned a lot more about blood cancers than I feel any person should ever have to learn. The lymph nodes are kind of like the car-wash of the blood system. At every second of the day 80% of your blood is in your cardiovascular system (veins, arteries, etc.), while the other 20% is working it’s way through the car wash (your lymphatic system). It’s slightly more complicated than that – in that the lymphatic system is a filter and so only plasma is actually circulating through your lymph nodes, but the gist of it is: my body is confused.
Lymphoma is a cancer of the white blood cells.
We are still waiting on results. In the last week I’ve had 4 blood draws, 2 CT scans, and a tumor biopsy. Now I have a PET scan and bone marrow biopsy scheduled, and I am having port “installed” because my veins suck and every time I have something that requires a needle it takes four needles, lots of pain, and 30 more minutes than it SHOULD take. So… there’s that.
Other technical stuff:
My cancer is currently “Stage 2”. You can read more about Lymphoma staging here. But basically, Stage 2 means that more than one set of my lymph nodes in infected, but because both of the infected sets are on the same side of the diaphragm it is still “okay”. I have a bone marrow biopsy scheduled for this week. If the results show cancer cells in my bone marrow then it will jump to Stage 4. If you rest your hands just below your rib cage on your tummy you will feel exactly where my tumors are. Under the palm of your left hand I have a 7 cm tumor, and then several smaller ones scattered across that area.
Understanding the “prognosis” can be confusing. It’s very subjective, but the general statement from my doctor was that people my age, in my health, with my blood results, with my type of cancer have a 70% survival rate of 5 years. This is supposedly good. It pisses me off because I shouldn’t have to think about this. But 70% is a lot better than say… 40%. So I’m trying to stay positive. I have zero of the “risk” factors that indicate poor prognosis, and unless my tumors reject the treatment it should be… relatively… smooth sailing.
My symptoms were exhaustion and back pain. Let me rephrase that. My symptoms were the symptoms of being the mom of a two year old.
I’m scared. The last few weeks have been full of shitty experiences. I’ve had three CT scans, a biopsy of one of the tumors, and thanks to my uncooperative veins each IV and blood draw has taken at least 3 needles in less than optimal locations (for some reason my inner elbow thinks it’s too good to be poked with a needle. Go figure.). I’ve been forced to think about things like how is Brandan going to handle this? How am I going to take care of my daughter and myself? If I don’t die will I ever have more children? Will I die?
I’m bitter. I’m 25. I have an awesome life and I hate that I’m dealing with this. Not that I think any one every “deserves” cancer, but I feel like… well… I really don’t! lol. This feeling comes and goes, but when it comes it’s difficult to shake.
I’m hopeful. We immediately reached out to our friends and family. We are incredibly blessed to have people who love us so much. Preliminary results showed that the cancer seemed to be well contained in my abdomen, my other organs look healthy.
I’m tired. Because let’s be honest – I’m the mother of a two year old who doesn’t nap, and being exhausted is not a new feeling. Unfortunately this disease has left me even more tired than usual, and the medicine to take care of the pain also makes me tired…. so I’m just tired.
I’m thankful. Before this point I’ve told just family and a few friends that I needed to lean on. Already I’ve felt the out pouring of love and support. It gets me through those bitter moments.
I feel like the luckiest unlucky person in the world.
So that’s my life right now. Emotional, over whelming, busy, crazy, exhausting, slightly painful, generally uncomfortable, and tired. Yes… my exhaustion deserves to be mentioned twice. lol.
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