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Chemo

In Flight
When I went to create this post today, I realized that I’d already done it four days ago.

Opening that draft led me to a page just as blank as the brand new one I started. This is the level of shock I’m in. Because two days before that, on the 29th of March, I found out that my chemo will definitely be starting this Tuesday instead of maybe starting as soon as the week of the 12th.

Will Chemo make me broke?

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It may seem petty, but the fear that saving my life will also cost me more than I take home in three years over  the next six months has been real, present and petrifying until lately. As I’ve said before, the point of conquering cancer, only to bring other huge pains upon yourself and your loved ones is lost to me.

Dealing with this has been a huge stumbling block but my burdens appear to be lifted.

My previously borderline inept insurance carrier well exceeded my expectations.

After bumbling or delaying almost every single test that had been ordered to confirm or give details about my diagnosis up until then, they turned around the subsequent order for all the medicines I will need in about four business days, when they were expected to take about two weeks.

These are not cheap or few drugs. There’s

  • separate chemotherapy and targeted therapy drugs for the actual treatment regimen,
  • the various things they give you to make the experience less stressful or to prevent an allergic reaction, which one of the drugs causes in 70% of people,
  • as well as the *just in case* items they order for the more dangerous adverse reactions.

I’m truly amazed that no bumblefuckery took place in getting them through my insurance process. It’s been my main worry and I’m so very grateful for this.

Although I’m aware that it’s possible for the insurance company to backpedal at some point and state that they refuse to cover some costs of treatment, that I have to pay for some or all of this out of pocket after the fact.

But being that they actually order and ship the drugs, and the fact that the best treatment for me happens to be both one of the cheaper ones for this disease, and quite effective, I’m 99% sure that I dodged that bullet.

And now that this worry is mostly lifted, the layer of mixed emotions underneath is bubbling to the surface.

So Many Chemo Feels

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Before I’m able to process an emotion, another one hits. Sometimes one cancels the next after a time, but mostly, the conflicting feelings linger, battling inside me.

Relief that the waiting is over.

Panic over. Well. Everything and anything that could happen.

More gratitude for this unbelievable wave of support and love that keeps coming at me.

Fear that I’m not as strong as I think I am, as everyone believes that I am.

Irritation at the insistence that I conform to the image of strongness that people seem to want me to keep projecting.

Anxiety over the actual process these first two days of treatment.

Even a little excitement at having a new experience.

It even feels a bit pioneering, when you realize that our generation could be the last one to die of cancer, with all the new treatments on the horizon.

(Some cancers are already considered “curable“, highly treatable, or have such long remissions that if you’re diagnosed in your golden years, natural causes would get you before cancer ever could. Cuba even has a lung cancer vaccine.)

And then I remember

via GIPHY

I have a type of Lymphoma that’s chronic, and considered highly treatable rather than curable.  Almost half of the Americans (or Brits, and probably Canadians) I know will probably go through some version of what I’m going through at this point.

And some of them, like me, have a high likelihood of beating their cancer only to have to go through the same process every two, nine, fifteen years.

For now I’m trying to comfort myself with the fact that it remains to be seen how big a deal that is. I have to factor in the reality that this could be way worse. Especially in my circumstances. It’s crazy but if about two dozen different factors hadn’t lined up exactly right, I probably wouldn’t have even discovered I had cancer until the conversation was about how long I have left to live, instead of how long I would have between relapses.

So yeah. All types of feels in the cancer hood.

34 thoughts on “Chemo

  1. Loving the info about your insurance company – you’re due.

    Thinking of you as always and loving your updates and your ability to process the highs, lows, bumblef*^kery (trying to to wind up in spam here), and everything in between.

    Xo,

    Kkf

    • Hugs lady. And thank you. You have been so supportive in so many ways. I don’t know if I would have made it this far without you. I can’t wait to show how much I care via some HMP projects.

  2. Can we add “bumblefuckery” to the “Fuck cancer” lexicon? Tee shirt? 🙂

    Much love and best wishes your way, miss. And sharing your journey like this can only help so many others.

    Love. x

    • Thanks Danny. I haven’t really promoted this because there’s so much going on and I feel weird about it. But yes, the original intention was to help people and add some humor to the conversation surrounding what is often a really dark topic. I was lost on the web when looking for ongoing first hand accounts on my subtype.

  3. Hello darling, I have been out of the loop for some time and I had no idea this was going on. So here I am. How do I serve you? Right now, I see how valuable you are to the world and how much the world needs you – healthy and functional and I hold you in that light. I send healing thoughts and prayers to you for your body and your mind. Of course, you have all these emotions. Who wouldn’t? You are human aren’t you?

    know this: You are precious and you are loved.

    Peace.

    • My sister how I have missed you. I don’t know what I need now but I’m not turning down help or support. Maybe a phone call. You still have my number? I hope you’re well. Thank you for your beautiful thoughts and kind prayers.

  4. I had the same thought as Danny about “bumblefuckery.” These days I’m hearing reports of insurance saying, “no, no, no,” and then switching to “yes, yes, yes,” which is good news.

    And all the feels — even the one of a little excitement at a new experience: Tinu, you are my hero.

    • It’s one of my favorite words, right up there with bastardization. I’m loving the insurance switch. 🙂 Thank you so much, for real though. Your words are so humbling.

  5. Here through Amy Vernon and sending you so much kick-assery energy. Here’s hoping the balls keep lining up in this way. I am so grateful for your honest roller coaster of descriptions of the whole thing. Only thing that would be better is if it weren’t at all.

    • Any friend of Amy’s is cool with me! Thank you for your wonderful compliment. It really makes my heart sing to think I’m reaching people and to think that we can have a more open conversation about cancer in society in general. For a disease half of us are supposed to get, there’s such a hush-hush shroud of mystery around it.

  6. I am SO HAPPY that your insurance provider came through. SO. HAPPY.

    One of the biggest burdens we faced with hubby’s treatment was dealing with insurance. Once I spent SIX HOURS driving all over town and fighting and being put on hold and being denied information because HIPAA (“That’s not how this works. That’s not how ANY of this works. Have you READ HIPAA? Really? Why don’t you go ahead and skim it, I’ll wait.”) before realizing that the difference between the covered and not-covered drug cost was pennies. LIKE ACTUAL PENNIES.

    I tell you this mainly to make you laugh, because you can ONLY IMAGINE that whole scenario (the HIPPA conversation SO happened). That was the first time I was escalated up the line because the service rep just couldn’t anymore and handed me off.

    Bottom line: here if you need me. Navigating this shit is HARD. Every type is different, every experience is unique. There is no right and no wrong way to handle it. But I know in my heart that you are stronger and tougher than anyone cancer ever DREAMED of picking on before now, and you will kick its ass and tap dance on its tiny little head. TINY. LITTLE. HEAD.

    And remember, through it all, the advances that you referenced? They’re happening NOW. So you focus on getting through this and let the future worry about its own damn self, yes?

    Much love from me and J and All Dogs. xoxo

    • I haven’t even got the words Mickey. I really hoped I’d be able to see you before chemo started. But we will hang us, the three of us (maybe dogs too) when I get to the other side.

  7. Oh for fuck sakes, this CAN’T be true!!! (or is it fuck’s sakes?). I saw this in my FB feed and stopped short. I was wondering just the other day if we are the only society that needs to initiate crowdfunding campaigns to cover our own healthcare costs. It’s terrifying to have to deal with the financial side on top of everything else.
    I’m sending lots of love and best wishes your way.

    • It’s some fucking thing, who knows. Life is short, it’s whatever the fuck you say LOL. We just might be but if it wasn’t for the current system I’d have no coverage at all on account of my pre-existing conditions with spinal disorder and nerve pain. So the terror isn’t as high as it could be, which is great.

      Thank you so much for commenting. I hope our next reconnection is over happier news!

  8. You is kind. You is smart. You is important! Hello lovely Tinu. First off – Fuck Cancer. Second, it sounds weird to say – but – yup – you got the “good” kind. I’m shocked and delighted (mainly shocked, btw) that the insurance process didn’t put you over the edge. And frankly you are long overdue on an insurance process that actually works in your favor! Now, the only concern you should have – and – it’s a real one – is how much more time I’ll have to focus on seducing Idris Elba. Please let me know how I can help (other than sharing Idris.) xoxo Annie

    • I like how you think you’re going to share MY boyfriend though. I’ll let you know if I need something. but right now, thanks to you, our mutual friends and Kathy, I am okay. Not great but not wanting. SO thank you so much for all the love.

  9. Hey, Ms. Tinu! Happily, I see your wit, erudition and all that bumblefuckery are much intact! Coolio. ( I suspect writing through chemo is not like writing straight. Far from it.) Sending virtual Cookie Monster cookies your way…

    • Lisa! I don’t even know what writing while on chemo is going to do. I’m trying to think of it in terms of regeneration, in general. The idea is for my body to lose the bad cells, but since some healthy cells will get caught in the process, well, there will be a whole new me, on a cellular level, way ahead of the normal schedule.

      So I’m thinking about what that new me can be. And aspiring.

      Thank you so much for commenting. I adored Cookie Monster as a kid, btw and love love the new commercial!

  10. “Fear that I’m not as strong as I think I am, as everyone believes that I am.”
    You don’t have to be anything except forgiving of yourself when you don’t live up to your own expectations. Everyone else gets to deal with their own stuff.
    Love and strength to you. So very glad something is going right at least. Xo

    • Hey Lucretia,

      How are you?

      You know I thought a lot about editing that sentence out because it’s hard to explain what I mean by that without the cultural context.

      And the fact that I follow it up with my inner “fuck-yous” makes the 2 feelings seem more related than they actually are.

      The fear isn’t about living up to expectations of others. I have irritation about the expectations, stemming from the whole “strong black woman” “black people don’t feel as much pain” or “you’re a full African, nothing can break you” things.

      The fear is about two things. First, certain people assuming that because I am somewhat strong, that I don’t need support or love or space or help or even pain meds.

      People say things like “you’re strong so you’ll be alright” one has nothing to do with the other.

      The second level is where the fear gets thick. The worry that literally my body has physically had enough and it’s tired of trying to get better. The spinal degenerative disorder, the neuralgia, the other mass in my lung, the asthma…

      Sometimes it feels like my body is a rebellious child holding its breath until I make the right turn somewhere.

      And so sometimes I think about how I’m going to handle it if my body is just fine with trying to heal.

      So yeah, I realize, my only job is to be. I’m afraid my body has reached its limit some days, of even the being.

  11. I just saw your post on Linkedin – don’t knwo if you remember me, we did something together a few years back on 10 things I learned in 10 years in business. Well RIGHT AFTER we did that I got breast cancer, stage IIIA. It’s been 3 years, they don’t say ‘remission’ for me, they say ‘NED’, No-Evidence-of-Disease. But I wanted to tell you: YOU ARE GOING TO BE OK. Chemo sucks. Big time. I will not lie or sugar-coat it. If you get red chemo, get ready, you will pee red koolaid. Nobody warned me and I had a panic attack the first time. but I promise you, you will be OK.

    • Hey Virginia,

      Of course I remember you! Your article was one of the highest trafficked articles at Women Grow Business that year.

      So sorry to hear you got breast cancer, but so happy that you made it thru.

      Thanks for the heads up on chemo. I was pretty sure it was going to be some BS. I had an aunt who passed a few years ago who fought cancer for ten years. She stayed with us a while and I could see a sliver of the experience.

      It made me want to hide under my bed.

      Getting the chemo seems like it’s going to be a better experience than the after effects.

    • Thank you! Welcome back anytime.

      Now that I’ve gone through the experience I want to document what happened to me – it would have eased the burden if I’d had a better idea of what could come.

  12. Nothing I can say to fix this except to say I love and adore you and you do this however you have to. It’s your journey and you have never been 1 to follow convention anyway. Thinking about you constantly. ??? We might have to do our own hangout if you feel up to it.

    • Aww. Smooches. The Chemo is fixing it. It’s not as scary as it seems, it’s mostly fear of the unknown. Which is why I keep writing about what I’m going through. 🙂 Thanks for commenting, that means a lot to me. Love you too!

      Also, yes, yay hangout. We should try and do it on a Tuesday afternoon because then I’ll have put on makeup to go to the doctor that morning. 🙂

    • The feels man! The feels. I really appreciate you being here for me. I will save my nod for a day when I’m stuck. The other day I was stuck on the couch with my legs above my head LOL can’t wait to write about that!

  13. Is this a share today from 2016 because you’re enduring this nightmare again, Friend? One can only hope it’s not true, that you’re in your rainy-day place peacefully reading with a coffee or thinking on the next bit of blog content. One can only hope that your new Texas home is comforting and that you’re happier, healthier. I’m sending all these hopes to you today in the hope that is realz. Much love, more hugs and Godspeed.

    • Hey hon!

      It’s because

      – new patients i meet keep asking me about my chemo experience.
      – today is my one year anniversary of being post-chemo &
      – I find out, possibly this afternoon, whether I need to be back on chemo or not, because the Lymphoma is considered controlled, not in remission.

      I might find out today that I’m in real remission. I may find out I need to go back into treatment. Or most likely they’ll say it’s still controlled. Remembering that Chemo wasn’t actually that bad, as well as how I felt then helps me cope with now.

      But you know what? Chemo was rough sometimes, but it wasn’t as bad as recovery has been. Would not have guessed that in a million years. My body is different, and I’m going through problems with my other chronic illnesses as if they are brand new. My stamina is just now starting to come back. I worked more during Chemo than I do now.

      Thank you for all the love and hugs. I’ll need them. I really appreciate your comment.

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