The chemo port – and a new bit of hope

After spilling my heart out to you on Wednesday and tossing and turning for hours, I finally fell into sleep, only to be awakened by my little one and his fears (the scary trees outside his window) at 4 a.m.  A few hours later, my hubs woke me up in the boys’ room, where I’d accidentally fallen back to sleep while comforting Little Bear, and we headed down to the hospital for my chemo infusion.  We don’t tell the kids exactly where we go when we go to the hospital these days.  They know we go for an appointment, and they know I’m ill, and that’s enough for them right now.  Better we get them settled into school and deal with normal little-kid fears and transitions for now, and work the cancer stuff around their comfort with the new-teacher, new-friends shuffle first.

After my name is called at the cancer center, I’m ushered back to sit in the oversized chemo chairs, one per curtained area, each paired with a small, uncomfortable chair, where the patient’s support person can perch as she or he holds the patient’s hand.  The other hand is held still by the chemo nurse’s elbow while she punctures the vein — or vein after vein, as she tries to get a good stick, where the IV slides nicely into the patient’s vein and stays there, ready to deliver the chemo.  I’ve had some horrible times in that chair over the years.  Nurses have missed my vein, popped my veins, rolled my veins, and all kinds of ugly during the 6 months of chemo I had in 2007 and monthly or quarterly lab draws and tests since then.  The chemo I need now, however (Navelbine every 2 out of 3 weeks and Zometa every 3 or 4 weeks) doesn’t go through an IV.  I needed a port.

I have a port now, and I mentioned it before, but I don’t think I showed it to you.  Here’s what a medi-port or a port-a-cathport-a-cath looks like, in cartoon version, unfortunately, but if you’re strong of stomach, you can always google image search port-a-cath and see one planted in many different patients and survivors.  There are many strong smiles out there, and it’s actually rather impressive to see so many strong women and men (and children) voluntarily getting this port for chemo and its nasty side effects, all in effort to live a little longer.  It reminds me that I’m just one of so, so many cancer patients today.

So I have a port now, and on chemo days the nurse gloves up, wipes the bump on my chest clean, and pushes a device into me that will attach the tubes outside my body to the tube inside my body that winds from the port to the jugular vein in my neck.  There’s a cut on my neck from the surgery, and I hope it heals soon, because with most shirts the port and tube itself aren’t at all visible.

needle assembly attached to a port The device is called a needle assembly, and it looks like this from the patient’s perspective, with a 19 gauge needle coming out the bottom and into my skin.  It’s a beast to wear on chemo day, but it sure does make withdrawing blood for labs and accepting all the various IV medications and such easy.  The nurse says it will be less tender after a few more weeks.  I’m glad to hear that, because it’s been more than 24 hours after use and it’s still tender.  (I tried holding an icy diet coke can on it to calm down the tissue — it totally helped!)

Because the cancer is in my spine now and I’m so uncomfortable, when there’s space, I sometimes rank a bed in the chemo unit, which is nice, because it’s quiet and I can get my morning sleep in while I wait for the lab results and everything else to come back – once they come back normal (or normal-ish), then the order goes into the pharmacy and they begin to mix the chemo.  It takes another hour and a half after that before the infusion starts.  But my cancer center is a good one, and well-funded, and we each now have a small flat-screen tv and cable to entertain us with, as well as a decent wi-fi signal.  It’s a pleasant place to get chemo, and I don’t mind it nearly as much as I used to.  But it does make me tired.

I’m not sure where today’s post was going, really, but I wanted to show you the picture of my port-a-cath and needle assembly, because it freaked me out a LOT at first, but now it’s just a part of me, and I’m learning to get used to it.  Just please, don’t hug me too close on my left side for a while – there’s a new bump there, and it’s tender.

Oh, I remember now!  The new bit of hope.  When we met with my oncologist yesterday, it was the first I’d seen her since my hospital visit, and I was pretty groggy then as they fed me all that pain medication.  We talked the situation through again, and we have some new hope.  First, we added the Zometa infusion back to my treatment regimen, and this will help to build my bones.  It wasn’t a failure earlier this year; Zometa doesn’t help keep the cancer from growing at all.  What it does is strengthen the bones so that the effects of the cancer cells in the bones are lessened.  We’ll keep doing that, and hopefully it will work and my bones will get stronger.  Second, we made a medication change to help me with some side effects.  And third, when we asked her about the overwhelming fatigue, the tiredness that is impossible to overcome, and the exhaustion that sends me back to bed every three hours, she was able to help, and to give me some hope.

The fatigue may not be from the cancer destroying my bones.  The fatigue may be a side effect of the medications.  Both infusions have heavy fatigue as a side effect, as do both of my pain relieving medicines (opiates), and another pill that I take for anxiety and hot flashes, side effects of (very) early menopause.  The combination is almost a guarantee that I’ll be tired, but no one expected me to be this tired!  So I’m to rest when I need to (which is still a lot), but next week I’ll start a sixth medication that will counteract this side effect of the first five.  I’m not anxious to add medication, since I’d be an all-natural organic girl if I could, but at this point my body chemistry is anything but natural, and that is what is keeping me alive.  So, a sixth medication it is, and I can’t wait to be able to be awake for a whole afternoon!

To think that I may be able to reclaim an afternoon without sleep?  That would make everything more possible.

Wishing each of you a good weekend,

Susan

48 Responses to The chemo port – and a new bit of hope

  1. lscheuer says:

    Susan – Wishing you long happy hours of awakeness.

  2. {sue} says:

    Oh hooray for that bit of good news! You are long overdue!

  3. Karianna says:

    As always, thank you for the update! XOXO.

  4. Stacy says:

    Oh Susan!! I’m wishing YOU a good weekend.
    Thank you for reminding me that no matter the small annoying concerns, I need to be thankful for everyday alive in this life.

  5. I read each and every post whether I comment or not. I am greedy to see you here. I pray daily for you and yours. Mine is a cancer-ridden family and your tears and your joys touch me deeply. Blessings, Penny

  6. My dear, so good to have another post from you this week. Don’t ever worry about “spilling” about the more harsh and difficult side of your battle– we are your friends, here for you, listening and learning. Your willingness to share this journey with us helps to make us more educated, and will inevitably assist us to raise awareness and support systems for others touched by cancer. I hope you know how you empower us all!!

    Wonderful to hear your better news today… We are rooting for you up here in Ontario, Canada!!

    Much love, as always, CGF and girlies 3 xoxo

  7. Robin says:

    Diet Coke to the rescue!

  8. magpiemusing says:

    and a good weekend to you!

  9. Karen G says:

    Susan,
    This is very encouraging news, on a Friday! A friend of mine has had a port for quite a while, and she finds it really helpful. It’s great to hear that you have treatment options – both new ones, and revisiting earlier ones.
    Also, you mention that you’d be an all-natural organic girl if you could. I am guessing that you are, as best you can, along with your treatments.
    Best wishes, and have a great weekend.
    Karen G

  10. Jane Gassner says:

    Love to you, Susan.

  11. Glad that the cancer center has been able to make an uncomfortable time at least bearable. Your port was barely noticeable the other weekend unless you knew to look for it, and I’m sure after a few more weeks of healing it will only have a small bump to distinguish it from your clavicle.

    Keeping my fingers crossed for you that this new medication help combat the fatigue of the others. You deserve to be able to live fully while you fight. Strength to you my friend!

  12. sutari says:

    Having read about the traumas with needles in the past, I am so glad you got this port!

    I have a friend who got a pump for his diabetes insulin infusions and he said it was fabulous!

    I hope this works as well for you.

    Of course he walked around saying “we are the Borg” a lot after that…

    Typed with thumbs on tiny screen, hope it is legible!
    Thinking of you.

  13. Megan says:

    Susan,

    You ROCK. Thank you for being so real and sharing a picture of yourself with your very own port. Like we have all mentioned, this is a place for you to share how you are really feeling, and to not sugar-coat things. You sound uplifted which has brightened my day. And we haven’t even met. I am so glad you are going into this weekend with good news.

    Hugs!

  14. You are so conscientious, letting us know what is going on, sharing your good news and hope along with the hard times, knowing how much people here care for you and wish you well! Your “real” life must be incredibly busy, with kids settling at school, chemo, side-effects, friends helping out, you figuring out for yourself what is your new normal and how to deal with it. Not to forget the laundry…😉
    You are such a generous friend, Susan, to check in with us and reassure us and be so honest with us here as well. I love that in the pic of you in the chemo chair you are smiling and toasting us!

    Hooray for hope, stronger bones and less fatigue! Hooray for good friends, little-boy snuggles, and WonderDaddy! Many (gentle) hugs, and much love.

  15. Linda Lawrence says:

    🙂 HOPE! Always a wonderful word! Love you!

  16. loran says:

    YAY!!🙂

  17. All natural, organic is overrated.🙂 Meds and being awake for entire afternoons is what it’s all about. Keeping the faith for you here on the farm
    Susan xo

  18. Susan, I wasn’t able to comment yesterday, away for a few days with very limited internet access, but I wanted to tell you how amazing you are, how much it means that you so honestly share so much of yourself and your difficult journey with us. We don’t need you to be strong or brave or anything else. Just you. And there is so much love here for you.

    I want you to know that I think of you often and that you are always an inspiration to me, whether it is you on a brave day or fear-filled one. I wish I could take away your pain. I wish I had super powers, and could make everything, or even one thing better for you. I hold you and your family in my heart every day, and count myself lucky to have met you.

    Gentle hugs. And wishing more good days, soon.

  19. Karen says:

    Sending you a big squishy hug – on your right side – and hope the extra drug can give you more awake time with your family
    Karen x

  20. Your writing is so stark and vivid I feel like I’m with you.

  21. justenjoyhim says:

    Hope, as you know, is a wonderful, fantastic thing. It can bring some light into the darkness.

    Here’s wishing much more HOPE for you.

    Love, love,
    Judy

  22. Amy says:

    I’m glad you have such a great cancer center and docs. Hope med #6 works!!

  23. Margaret Suttle says:

    Hi Susan,
    Having a port for the past nine years has made an incredible difference in my treatments, making me a strong advocate for their usage. I hope you will have a positive experience, as well.
    Love you much,
    Margaret

  24. Amanda says:

    Rooting for you to get your afternoons back!

  25. Sue Farrell says:

    Thanks for the update. It is so appreciated. Now go have a good weekend with your family.

  26. And may YOU have a GREAT weekend, full of hope and fun. I am so sorry that the side effects are so huge, but it is tears-in-the-eyes AMAZING that the side effects are what are wiping you out my love.

  27. Kristen says:

    Dude, you took a picture of the port hooked up, from your eye level. I kept turning my phone around because i couldn’t figure out the angle. That’s like the awesomest thing you’ve ever put on this blog. I mean, besides the pouring out your heart part.

    I will miss you terribly while I’m gone. poolside was lovely today and I followed your recommendation. Waiting for a call-back. Xoxo

  28. So happy that you have some good news.

    I can feel your happy in your words.

    Imma gunna stop whining for a while and just think of you and smile.

  29. Debbie Willey says:

    Susan, you are an amazing woman. Our diagnosis is similar only I am not doing chemo.the zemeta is good. I am hoping to keep holding off on the chemo. I think of you every day as if we have meT. I thinkyou may be from maryland as you talked About driving into baltimore. I am from MD even though I live in FL now. I cannot speak honestly about how I feel. Thank you for sdaying it for me. Susan my prayerS are with you. Take care. Deb.

  30. Stimey says:

    It’s nice to hear chatty Susan talking of hope. I hope too that your bones get stronger and you are less tired. Much love to you!

  31. ashpags says:

    It’s always good to see an update from you, especially one that ends with hope. Seems like the port will make things easier–thanks for explaining it. Thinking of and praying for you often!

  32. Elesha says:

    Soooo happy to hear some good news. Enjoy your awake time.

  33. Niksmom says:

    Happy for the good news and eagerly hoping the addition of the sixth med will give you more strength/energy.🙂

  34. Bon says:

    …i saw you’re working on a journal article. cool. that sounds like a good, good weekend.

    glad for the hope. always.

  35. Michelle says:

    I just came across your blog for the first time today through The Bloggess. I’m currently being treated for lung cancer and, while I’m not happy about it, I read your blog and thought to myself “Yes, I know what you mean!” The port, the exhaustion, the chemo-induced menopause, the pills, side effects, hospital visits, labs, etc, etc. It’s hard to hear people tell me I’m brave through all of it when I’m only doing what I’m told. But when I read your words of your struggle, I get it. You are so brave and so strong and bless you and your family and extended family of support. Here’s to those wonderful moments of extra energy. Like my boyfriend says, “For every 10 minutes of tears, we’ve had hours of laughs.” It’s those laughing moments that drive us through those down times. I don’t mean to compare your struggle to mine, each are unique and I respect the fight you are waging. God bless you!

  36. Erin says:

    I too came across your blog via The Bloggess and I’m glad to have found it. I’m familiar with the port, the chemo chair (and the crappy chair next to it), the pills, hospital visits, etc because my mother was diagnosed with cancer earlier this year. My mother doesn’t openly share her feelings so reading about your hopes, feelings and fears makes me feel like I’m gaining insight into my mother’s world right now. Wishing you a wonderful weekend with your family and I hope the changes in your treatment plan will make life easier for you.

  37. Ahhh, an icy cold diet coke can cure many ills. Glad it helped you a bit too. So, in terms of the dc – what’s your order of preference: fountain, can, 16 or 20 oz. bottle, or glass from a 2 liter ? (Or are you not THAT into the dc ?)

  38. PGoodness says:

    Oh yay! A bit of good news. Hoping you get to feeling more awake soon. Thanks for sharing about your port…I imagine it’s a relief of sorts.

  39. Suebob says:

    Sending you love.

  40. NYFriend says:

    Keeping my fingers crossed that #6 will be an awesome countermeasure against fatigue!

    I hope it starts working soon so that you can enjoy more of your summer vacation, and then the thrills (and chills!) of the start of school. 🙂

  41. Catherine says:

    Susan, I hope you had a weekend of both good rest and “awake” times — and are having a good start to this week.

  42. I am so glad that you are in such good and responsive hands. Hope is good..and if it takes a 6th medicine to give you strength and less fatigue…then so be it. As I look at the blue sky and bright sun today–symbols of hope to me, your words of hope flutter in the sky like the butterflies. sending you love!

  43. Ann says:

    Hi Susan, just started reading your blog after getting directed here from The Bloggess. I too am dealing with raising kids and battling a nasty cancer (in my case, one that has only about 20 documented cases world-wide; this makes figuring out treatment interesting, to say the least). Thank you for sharing your story-I really don’t want anyone else to join Club Cancer, but it helps to read these kinds of blogs and know I’m not alone. Take care, Ann
    PS Glad you got the port-I have one and I love that sucker.

  44. Jojo says:

    I am not a big country music fan, but this video by Martina McBride is pretty touching.

    http://www.martinamcbride.com/media

  45. Megan says:

    Having a portacath made a world of difference for me – receiving drugs was far less painful, I did not have lots of things taped to my arm so I didn’t feel so restricted, and it made the delivery of drugs quicker. A shock to start with, but soon took away a lot of my chemo anxiety. I agree completely about the chair(s) – one size that fits nobody! As for Zometa – my own experience was truly remarkable. I do hope the same happens for you.

  46. Aunt Pat says:

    Keep the good news coming !
    Prayers and Love

  47. Susan,

    I just met you the other night on Twitter though my Friend @jodyms.

    Thank you for sharing such personal and educational insights. I’m a firm believer that by sharing information we all win no matter what role we play to help rid this world of cancer forever.

    You touched me deeply the other night on #BCSM and your knowledge and transparency are a powerful way to help spread accurate information. This is a powerful way you are helping all of us!

    Thank you,
    Lisa

  48. neuropathy says:

    neuropathy treatment…

    […]The chemo port – and a new bit of hope « Toddler Planet[…]…

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