Going, going, gone…

February 23rd, 2014 § 35 comments

ImageSunday morning.

A different kind of strength: shave the few soft but strong hairs that are finally ready.

Now gone to the floor.

No tears.

Necessity.

……….

You’ll be seeing more posts here in the near future about some of my feelings over the last two months. I’m starting to feel more like myself. The vertigo is lessening with the decrease I’ve been able to make in the pain medication, as we’d hoped. I’ve reduced the pain meds by 20% and the hope is that as the radiation effects start to kick in I will be able to decrease more. It’s been five weeks now since I finished radiation. I needed these Fentanyl patches desperately while the tumors were out of control. I could not have done it any other way. But certainly we all want me only using the amount I need to control my current level of pain.

I will be going back to meet again with my palliative care doctors this week to reassess my pain meds and talk about the plan for the next few weeks. I was thrilled to see that my last post about the importance of early palliative care and its definition (not end-of-life pain management… but instead total patient care pain management) was so well-received by patients and doctors alike. I encourage both sides to really form a team and focus on all side effects that patients are having with all kinds of treatment.

Patients function better not only emotionally but also physically in that they will heal better if their bodies are not weakened by pain. It takes trial and error to find the right drugs and the right amounts. It takes patience. Most palliative care doctors are experts in patience, I have fortunately found. I know that is not always the case and I always receive emails and comments from people who have had distressing experiences with their care. I am so sorry for that. I am hoping by relaying my own experiences, readers who have not yet found help with pain will have strength to ask again or pursue help if they’ve been unable to.

I’ve started my second month of chemotherapy (Taxol). I do three weekly treatments in a row and then have one week off each month. I had my first infusion of my second month on Thursday. I haven’t had any additional reactions to the chemo so I’ve been able to have the sessions done rather quickly (30 minutes for the 3 pre-medications and then 60 minutes for the actual Taxol). Sometimes I go alone and sometimes I have a friend join me. I am developing a routine and it has worked well so far.

IMG_2023We still have a lot of snow on the ground and on sunny days like today the brightness is astounding. We are all anxious for Spring but it’s just not here yet (more snow due to arrive this week). I am thinking of my snowdrops and daffodils just waiting under the snow pack. The photo at left is from last year… can’t wait to see this in the front yard again soon.

For today I’m sporting a head scarf and getting used to seeing a new reflection looking back at me in the mirror.

………

Make the most of this day. Whatever that means to you, whatever you can do. No matter how small it seems to you. Don’t waste it.

Tagged , , , , ,

§ 35 Responses to Going, going, gone…"

  • Hillary Kwiatek (@hillarykwiatek) says:

    I am glad to hear your pain and the vertigo have lessened. Soak in the warm rays today. I saw some snow drops in my neighbor’s yard in a bare patch of grass near her house and it was thrilling. And there are tiny buds on my lilac tree.

    Spring is coming.

  • Glad the vertigo is receding. i look forward to spotting the daffodils with you.

    Love you, pretty lady.

  • Diana says:

    Glad to hear from you again. So good that you have been able to decrease pain meds again.

    I hope you will experience spring soon. Here in the Netherlands we have had one of the warmest winters in centuries. No snow at all!

    I will have a CT scan tomorrow and may need to switch from Xeloda to Taxol soon, depending on the outcome of the scan. Good to read your experiences!

  • Tami G says:

    Lisa it’s so nice to hear from you up and about on this Sunday. I injured my knee pretty bad last week and I’ve been limping around in pain but when I read your blogpost and tweets, I get a reality check and realize more than ever that I have little to moan about in the grand scheme of things. Thanks for always putting things in perspective. I hope you realize that your blog posts and tweets are more than just words. They hit home in several ways. Have the best Sunday you can and remember we all love and support you out here in cyberspace! Hugs fron Florida xxxx

  • Gail says:

    Thrilled to hear that you’re feeling better, that the vertigo and pain are subsiding.
    Sending you love.

  • I am always amazed by the amount of grace you exude in your writing. No matter what your day or week has brought you, your grace always shines brightly.

    Such lovely news to read that you’re feeling better. So thankful for that.

    You’re in my thoughts daily.
    xo

  • Leslie says:

    Beautiful post, Thank you!

  • Delia says:

    So happy to hear that your pain has lessened, which in turn, has meant easing up of meds-induced vertigo. I hope that this means you can enjoy your family and Lucy even more. xo

  • Morning Lisa thank you so much for posting. it’s great to hear from you. There is a woman here in Minnesota who makes headbands that cover part or most of your head that are stretchy and soft and really neat- it is called urban halo- they come in zippy patterns too. Goggle them if you like- I ove them.i have met several folks from my hospitals palliative care team.They are awesome! I am so fortunate. I know we will get to know each other better. For now they are in the wings- ready to come out when needed. Since my stroke I have had nerve pain on my left side I take some meds for it- it comes and goes but when it comes and stays present as you sad it is something on my psyche.
    When you mentioned you flowers under the snow- I thought of a beautiful song sung by Bette milder in the movie about Janis Joplin- called The Rose. “Far beneath the bitter snow lies the seed that with the suns love in the spring becomes the rose.” – if you haven’t heard it- I recommend you tube or just reading the lyrics. More thoughts on patience.I hope today is peaceful and full of light. oxoxP

  • Kim C says:

    Thank you for this heart warming post on this cold and snowy day in Vancouver, Canada. I have to agree with Patti – your grace always shines brightly. It’s so good to hear you’re beginning to feel better.
    I too have suffered a few set backs, but will continue to journey ever upward and onward. I will make the very most of this day, Lisa. It helps me to think of you as a kindred spirit.
    Kim

  • Rebecca says:

    So nice to see you feeling well enough to post an update. Pain care is such a touchy thing. No one wants to get addicted to painkillers and yet there is definitely a time and place when they are necessary.

    Looking forward to seeing new photos of your daffodils when this snow is finally gone for the year. Just another week or two before the maple syrup places will be open again so I know it’s coming.

    Rebecca

  • Ann says:

    Holding you in my heart always.

  • Katherine C. James says:

    Thank you for your post. You have been on my mind. I was thinking yesterday how much I miss you when you are quiet, and I know I am one of many who feels that way. Sending you love and thanks. Wishing you the best possible outcomes, and time, lots of time, for you and your family to share. xo.

  • Michael Schubert says:

    Thank you for posting. It is difficult to find words. You do it so well. My wife has been on and off chemo for 8 years. We are happy to say that but it has not easy.

  • Tracy Frank says:

    Hi Lisa!
    I just wanted to say hi to you. My name is Tracy from Santa Monica, CA, going through Stage IV BC too. I found through the press on those despicable NY Times reporters an well…I just wanted to say hi to you. Your blog is beautiful and so are you. Thanks for carrying the flag for us. I am with you always – even if you don’t know me. ( plus my maden name was Metchek, which kinda sounds like Bonchek) .
    xxoo

    Tracy Frank
    And I sent you my new little blog that I recently started ….

    http://tracyfrankca.wordpress.com/

  • Pam says:

    Thanks for your positive spirit. I hope you know how much you help others by sharing your own thoughts and feelings. Btw, have you heard the birds out there today? A sure sign of spring!

  • Lovely to hear from you. Sending masses of good thoughts and support from here!

  • joanne firth says:

    Thank you Lisa. This brought back the memory when our razor came out, after weeks of fretting about losing my beautiful hair and then a couple of days watching it shed itself all over the house, shaving day was a relief. I went to my vanity, put on my biggest smile and took of picture of my newly bald head. I save that picture, as a reminder of the beauty I saw in it. The strength. The determination to finish my chemo. I know it is not all about the hair but it was a big deal to me at the time. For a while anyway.

    I’m glad that your vertigo is getting a little better and that you have found a new routine in getting to your treatments. You are in my thoughts daily. xo

  • Pam says:

    <3
    Thinking of you every day.

    Thank you for the update! I'm glad to hear the vertigo has lessened.

  • Kirsty Aversa says:

    I admire your spirit! Glad you are experiencing some pain relief and feeling more like yourself again. My wish for you: time …..LOTS of it!!!

  • Tracy Murray says:

    The promise of spring and the return of flowers has remarkable healing power for the soul. I hope your pain continues to lessen as does the dosages on the meds. You’re right, you have to keep the pain in check to give your body the strength it needs to do everything else.
    Keep fighting the good fight.

  • Melissa Weir says:

    Hi Lisa. Thank you for this post. It reminded me that there are babies under the snow ready to pop when the time is right. This harsh winter has made it difficult for me to daydream, even though my office looks out upon the wooded backyard where the daffodils and hyacinths and allium are waiting. But for now, I’ll not waste the day lamenting — I’ll enjoy the sunshine on the snow. The drifts and icicles will be hard to imagine come the dog days of July and August. Thank you for inducing this moment of mindfulness in my life. You have that power over all of us. Sending all positive thoughts today and every day. :-)

  • Leah Wise says:

    Thinking of you today!

  • Susan Zager says:

    What a relief that your pain is managed and you are surrounded by such a great team in reference to your care. I am sure the hair loss is no picnic but I understand it is necessary for your treatment. Thank you for keeping us in the loop. Sending you tons of love and light! xoxo – Susan

  • With scarves, with stubble, with horns or antlers, you’re beautiful inside and out. Glad to hear the pain receding, and looking forward to seeing you smile at blooms again. xo

  • Dee says:

    Losing your hair is a minor inconvenience compared to what you’re been through. You’ll sail through it with style.
    Damn Taxol.
    Damn cancer.

  • Elizabeth says:

    Glad to hear that things are getting better for you and that you are not in as much pain as before. May it continue to only get better and better.

  • I am so glad that you are feeling more like yourself and that your posts here resonate with so many.

    I have a friend who was diagnosed with Stage III breast cancer last week, she is younger than me (so, early 40s) with 2 young sons at home. She is having a port placed this week in anticipation of chemo preceding a lumpectomy and radiation. I feel like I am a much better support to her for reading your blog.

  • Kris Ebner Martin says:

    Thoughts, prayers, and loads of healing energy being sent your way. You know that all you have to do is call me if you want or need anything – you or the kids.

  • fran kraus says:

    Lisa:
    Your positive and encouraging words regarding Palliative Care doctors is what I needed to contact them here in Pittsburgh, PA. My husband has stage 4 lung cancer that has now spread to his liver. He is also on Taxol.
    YOU will be in my prayers.
    Fran Kraus

  • Geraldine says:

    Dear Lisa, thank you for the reminder to find something good about every day. I’m looking out on a dark, windswept and wet landscape this morning and Spring seems very far away. But there are a few streaks of dawn in the sky and hopefully there will be some sunshine. Best wishes from Ireland – keep well.

  • Jane Cavanaugh says:

    Hi Lisa, I happened upon your blog through facebook. It is beautiful, you are beautiful. I am not sure if our paths crossed in college but I was on swim team with your husband (he may not remember me because I was not a very strong swimmer like him and I kept to myself — also, I am sorry to hear about the sudden death of his mother). I am now a pharmacologist doing research on neurodegeneration and breast cancer (as 2 separate subjects). As a researcher, it is important to me to see the disease through the patients’ eyes. Thank you for sharing your journey.

  • Shimika says:

    I’m happy that you are feeling better :)

  • Karuna says:

    Thank you for making a path for me. I learned experientially this week what you had described as not enough energy to write, after my second taxol infusion. My strength is rallied when I think of you. My hair came off too, it was a big wake up call. I am a worthy opponent. Thank you, Lisa.

  • christopher oloughlin says:

    Loved your post. Finding the right amount of narcotic to supplement your natural endorphins when your body grows more pain receptors in response to new internal changes is a very slow process. Balancing break through short acting doses with long acting doses takes time. Thank you for sharing your courage and support for all.
    Love
    Christopher

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

What's this?

You are currently reading Going, going, gone… at Lisa Bonchek Adams.

meta