Chapter 10: darker nights

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.

At the infusion center. That thing on my chest is the port hook up. The area is numbed prior to insertion, so it doesn’t hurt at all.

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Thoughts

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.

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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.

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More thoughts:

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.

 

 

 

 

15 Comments to “Chapter 10: darker nights”

  1. Thank you; this was very well written.

    The medical community has become much more responsive in its recognition and treatment of depression. It wasn’t long ago that many patients were brushed off as “moody,” or “melancholy,” or dismissed with a casual “they’ll get over it.”

    Research into the neurologic causes behind depression has shown us what people with depression often already know: this has nothing to do with mood or emotion; this is a whole different ballgame. This is a disease, and people need their doctors to listen.

    Thanks again for sharing, and best of luck with your treatments.

  2. Jessica, thanks for talking about depression. I get on my soapbox about mental health a lot, but I’m not sure everyone realizes how it feels to be depressed or have any other mental difficulties. I like how you describe it as not being in control. My depression wasn’t quite the same as yours, but the lack of control was definitely a sensation I had in common. I know in DE, and I think in VA too, dialing 2-1-1 will get you in touch with a phone service that can connect you with whatever community services you need, including mental health professionals. For your readers’ information.

  3. You are a strong and beautiful person. Thank you for sharing your experiences so that others can benefit from them.

    Hoping for good news with the results of your PET scan.

  4. It is a hard thing for people who have never had depression to understand. It seems that the common experience of other illnesses are relatable to our everyday – most people have had a cold, sprained something, had the flu. It’s in their physical memory, depression isn’t. For a lot of people, they react with fear to a lot of things – rape, cancer, AIDS, in such a horrified way because they just can’t empathise. It’s a brave thing to bring into the open, good on you for being brave. Good luck with your treatments, before you know it this will be a distant memory, an extreme one, but still a memory. May you have many blessings in your life :0)

  5. I know the pain of depression, though not long term like you have. I also have several family members who struggle with it. I agree, the more we talk about it, the less of a stigma we will have.

    I am sending positive vibes your way. My heart to yours.

  6. Jessica, I hear you! I have struggled with depression a long time and am on medication for it. You are a very strong person and you can get through this too! I didn’t realize you had had this for so long that sucks, but odds are just that and you can beat them!

  7. Thank you for sharing your story. It made me think about at the end of the day, the only thing that really matters in this short life are the relationships we form with the people around us. I hope you have good people in your life. I truly do hope you are able to watch your daughter grow.

    As someone who interprets PET scans and places chest ports, I wish you the best!

  8. Jessica….. You are in our prayers……really! I never would have guessed you suffered with depression. I’m so sorry but so thankful you understand the need for treatment! Beautifully written Jessica. We think about you and your family often and remember the fun dinners we had together here in Georgia. Try to smile as much as possible! I’ve heard a Positive attitude helps FIGHT it but I can only imagine. My niece beat stomach cancer after a stem cell transplant and then a couple of years later was diagnosed with leukemia. She eventually had a a bone marrow transplant and just celebrated her 1 yr anniversary of Cancer free……I’m telling you this because I want you to continue to have faith and hope!!!! It’s also OK to be mad!! Just always remember to pray.
    Do you still play the flute? I remember how happy it use to make you . We are pulling for you. Lots of love coming your way!!
    Laurie

  9. I admire your courage! I had a benign tumor removed in Oct. and realized about the same time that I have been deeply depressed and didn’t realize it. It’s such a difficult thing to not be able to trust your own thoughts and feelings. I still haven’t talked about it on my blog…I’m getting closer to that but haven’t felt able to deal with anything beyond what I had to until recently. I understand your hesitation bc a public dialogue is hard. People who haven’t experienced depression have a really difficult time relating. As in, impossible, and that frequently results in comments that are meant to be helpful but make the person with depression feel worse. But there are lots of us out there who have first hand experience. Good job opening a discussion!

  10. I’m glad you are still alive. Depression tried to kill me too, but I fortunately got help. Much love to you.

  11. I loved your posts before December 27,2013, and I love them even more now. And as a cancer survivor, I can tell you that neither cancer nor depression will define you, but they will become part of who you are. But please, please, PLEASE don’t ever feel like any of this is your “fault”! And, yes, your body may not function perfectly, but who’s does?!? You know that time you’re talking about that you may have been sick, and that they may have been able to do something, or maybe they couldn’t have. Those were your last carefree moments. Cherish those. Live every moment you have left to its absolute fullest, whether those total 30 years or 89 years, or whatever–but anyone who reads your posts or blog knows YOU already know THAT! Good luck to you sweetie.

  12. Thank you for this well-written and honest piece on depression. Depression and its’ cousin anxiety have plagued me over half of my life. It is difficult prior to recognizing that something like this has hold on your life to truly work on “getting better.” Medication to allow me to better work through therapy has been a life and sanity saver.

  13. Well-written, Jessica. I’m glad that you’re speaking out about this It does make me sad the stigma that is still attached to mental illness. It is that, an illness, you don’t tell people with cancer to just suck it up, do you? Or you shouldn’t, the same goes for depression. Yesterday I had a conversation with my manager and our concerns for our patients with mental health issues. We both expressed frustration that less is done about this problem. He said that when it comes down to it, mental health is not a priority. That seems so wrong to me. A person’s mental health is central to their well-being, it absolutely should be a priority. And for those that don’t suffer from depression or other mental illness, we need to be kind and comforting to those that do.
    I suffered from post-partum depression for awhile, and I wanted to kill myself everyday. I recognized that my thought patterns and emotions were not healthy. But I don’t know that it’s quite the same as having a long term condition. With my depression I clung to the hope that at some point I would get to sleep through the night again and my diet would go back to normal and I wouldn’t feel so out of control. In any case people with depression just need love and support. The very worst thing that people can do is dismiss their feelings and their sense of despair. Hopefully by reading your post, more people will recognize that. Jessica, you are strong and you are awesome and you can get through this one too.

  14. Thank you for sharing about your depression and where you are now. I think good thoughts for you as often as possible. Ginny needs her mommy to watch her grow up and I’m over here rooting for you. Your hat is beautiful and you look beautiful in that photo.

  15. Depression is easy for people to write off because if you don’t suffer or know somebody that suffers you won’t understand it. It’s easy to tell somebody to stop being sad, but it can feel like the hardest thing in the world to even get out of bed when you are depressed.

    Thank you for a beautiful piece. Good luck with your cancer treatments.

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