I think all of my cancer is gone. At least I hope so.
I check in with one of my 5 cancer team doctors on average once a month. But even with being 8 months after my surgery, and 5 months after completing my radiation treatments, I am still, I have to be honest, miserable.
I am in pain without a break 24×7, as a result of Lymphedema, scar tissue ‘cording’ and radiation.
To help with the pain I have been prescribed Gabapentin by my Oncologist but it has had very little effect. It’s supposedly a long term pain manager with less adverse effects than that of your popularly prescribed opioids.
I am going to Occupational Therapy every week to try and get it under control. Who knows though if the pain will ever go away.
Beside the pain I also have significant mobility issues and worsening neuropathy issues. My incision has yet to heal, likely due to the radiation. You can see the quadrant on my torso where I was irradiated. Notice the brownish hue of my skin it left behind. You can also see the increased swelling on my left chest side from the lymphedema.
Since my breast cancer was fueled by estrogen I will be taking Tomoxafen, an estrogen blocker, for at least the next 5 years and I hate it. Let me tell you the reality of how it has affected me:
- I have early onset menopause.
- I have hot flashes. My skin and hair texture have changed.
- My hair is falling out in handfuls every day.
- I have gained more weight.
I was doing so well with my workouts, then my lymphedema kicked in and knocked me on my butt. With a combination of lack of exercise, tomaxafen and diet, I have frustratingly put on more weight. Which leads me to…
My body image sucks.
Right now I do not have a loving relationship with my body and how I look, maybe forever. And as a woman who loves fashion, I’m not used to how I look. I put together my outfits and they look far different from what I imagined or how they looked a year go. It makes me feel confused, embarrassed, frustrated and sad.
I feel irritable and down at times. Constant pain takes a toll on you, as I’m sure many of you know who suffer from chronic pain. It takes it out of you mentally and physically. I am fully aware that depression is a concern because of all the above, and depression being yet another drug side effect. I try to manage by meditating, petting my cats, going for a walk, but it’s tough.
I have many moments of fear that I’m going to get cancer again.
Radiation August 2015
Mastectomy, Reconstruction & Lymphedema Swelling, January 2016
Like many cancer patients, I have been told that much of these are ‘normal’ symptoms after what I have gone through.
To top it off, my Guillain Barre symptoms didn’t just magically go away either. So I’m still dealing with the awful extreme fatigue and peripheral neuropathy and migraines.
I feel constant guilt; I survived didn’t I? So many people have it much worse than me, probably many who are reading this have worse challenges than I do. I’m a terrible wife, I’m selfish, I complain too much, I can’t accept many social invitations, or I have to miss them. The list goes on.
So I hide it, a lot. I look better than I feel. I still have my sense of humor, and try to stay positive.I also have a tendency to be sarcastic and self deprecating; it’s my schtick and my way of coping. I mean, I have plenty of good material to pull from.
People see me now and naturally ask ‘how are you?”, and assume I am well because I look ok on the outside. How do I even answer that question? I have no concise way of truthfully answering the question, nor do I think people want to hear it. At least in my brain they don’t. I generally just say ‘I’m fine, getting better’. Because as soon as I start to say something like I have pain issues, or lymphedema, or that it took all of my energy to get ready and be here; I can almost see them uncomfortably squirm in their seats. This isn’t a criticism, my truth just makes people uncomfortable and puts them in an awkward position. I don’t want to do that, so I would rather give the canned ‘fine’.
But how can people help if they have no idea what is going on? I discussed this with a friend andwhile she agreed it’s a challenge and a balance to whom and how much to share, she said it’s impossible for friends to help if they are uninformed. She also suggested I select the people I know can handle the true answers. Good advice.
I don’t want this piece to come off as a pity party for me. But at the same time I feel a need to inform people of my, and millions of other women’s, situation. I don’t want to be preachy so rather than tell you what I think you should do I’m going to tell you what I’m doing or trying to do. These are my personal action items.
We have all seen the quotes with ‘everyone is dealing with something’. This being true, I am resolving to be more thoughtful, proactive, and kind to my loved ones, friends, family and community.
When I ask questions now, I am asking with the sincere intention of learning and caring about that person . I want to celebrate the positive things happening in their lives, and acknowledge their struggles and determine if I can help them. In return I am going to offer that same level of openness.
I am taking more action. I am making the calls, sending the notes, and planning the visits. I do not just walk past a stranger in need.
I follow inspiring Social Media Accounts: Dalai Lama, LeanIn Org
I am working on being more grateful for this body. I’ve joined a Lean In Circle to help me get through my rough patches. I am looking into joining Gilda’s Club.
I am regularly filling my own tank by breathing, meditating, and going out into nature.
I try to smile at people more.
I hope this post does as much for you or someone you love as it has for me. xo Pdub
Powerful message. Thank you for sharing.
Thank you Corin 🙂
Thank you for sharing this. I had breast cancer in 2005 and radiation at that time. Then 2010 a reoccurrence so a bilateral mastectomy with reconstruction. Because of the radiation years before my skin would not stretch to accommodate the implant. So, the surgeon did a surgery called a lattismis dorsi flap removing skin from my back wrapping it around to the front of my breast. Yes, I’m grateful to be alive. However I have on going back pain, my clothing fits very differently, I feel self conscious to shower in locker rooms, and other than my Gilda’s club group no one seems to understand what the aftermath of such a diagnosis / surgery is like. I appreciate your candor in putting your story out there so that those who have not gone through it can understand better and to encourage those of us who have to speak about it.
Hi Chris. Thanks for your comment and for sharing. It’s pretty frustrating when you are dealing with the imminent issues at hand, you don’t even think too much about long term effects and the impact of quality of life it might have right? I never thought too long about it. I did what I had to do, and it sounds like you had to do just that. So sorry to hear all of these procedures have been difficult for you physically and mentally. Really I sincerely feel for you. That back surgery is a tough one from what I understand from my own plastic surgeon. I also know there is something ALL the time that causes pain, and frustration, so I deeply empathize with you. Wish I could swing by to make you laugh or do a wardrobe revamp to find things that feel good and make you feel your best. I think you are amazing for letting all of us know what you are going through, and have been for years. I hope people can learn something from your story as well. Thanks Chris, I hope you have a nice weekend xo Pamela
I just have to say – well done Pamela!
I recognize what you say about the “how are you” question and how people do get uncomfortable when you really tell How You Are, but I thats some people and there are people who like an honest relationship with all of what it holds. Isn’t it like having a huge argument with a friend – you hope a friendship can take that you have different opinions and sometimes very different, and very strong different feelings about things.
I think it is good that you are one of those people who is open to share their reality. As a friend of yours, I think you are brave do do it, and I think it is good for you to share in your difficult time.
I also think it may help other people, it can inspire or put things in perspective.
For me, I am dealing with the grief of the loss of my father, I feel consumed by it. Reading your post made me pop outside of my grief bubble and make me think of someone else than myself.
On the body image topic. That is a difficult one. I think it is not ok to brush it off as vanity or “there are worse things”. It is your body and you know how you feel comfortable in it.
Meditation. So figgin hard! But isn’t it the key to feeling great? Somehow it seems harder to explore meditation than to train for a triathlon? Compassion meditation is a gem though, so useful; “my body is probably doing it’s very, very, very best to keep things [thighs] the way they where. <3
Lots of Love and Cheer from far far away in the Nordic Country Sweden,
Hello Susanne! You have been in my thoughts. Helping others gets me out of my own head too. And yes I am going to meditate on my (former) 6 pack abs and will them back 🙂 Sending my love to you always, and expecially during this difficult time. So do Salem & Misty. Thanks for taking the time to share your thoughts and wisdom.
Thank you for your candid words. I am so moved, with sadness, gratitude and honor. Sadness for what you have had and still are having to endure. Makes my heart hurt for you and all who love and adore you. Gratitude for you that you have the strength to endure this painful and trying disease. Honor as I am so proud of your strength and spirit to carry on. And that you can even share your hardships The same time you share your appreciation for all around you that may be challenged with similar circumstances.
This candid post shows me how important it is to hear from those challenged with health ailments-emotional and physical. Although it is hard to hear someone you care about having so much pain and strife, because of YOUR strength to share, we can all see the reality of life with this disease. I can imagine that nothing can prepare you this type of hardship, but what i take away is a reminder to be so thankful for my body, soul and spirit. And a bit of preparedness in the possible case that I or someone else I love may have to endure something similar.
Thank you so much for your strength Pamela.
Hi Katherine thanks so much for sharing your thoughts, means a lot to me. Your “olbrich’ suggestion last week made me perk up with the thought of some grounding and peace with nature during the cold winter. And of course lunch together soon. I can’t wait for your show, I’ll do whatever it takes to get myself there 🙂 You change lives and help people look at themselves more lovingly with this annual show. And I for one could use that right now 🙂
Oh, Pamela, my eyes are wet with tears reading this. I know you are struggling, but I had no idea the depth to which you were struggling. I’m both sad by this (because I hate that you’re suffering) and inspired because you’re being so “truthy” (the only George Bushism I’ll use here).
That’s my biggest takeaway from this blog: the power of one person’s honesty. You are being honest about your suffering, and honest about how it’s changing you. A whole bunch of you got burned away and cut away, physically. And now even more of you is being burned away and cut away (pride, self-concept, separateness.) In Zen, we talk about the Sword of Truth. It has a very sharp blade, and can cut through a lot of bullshit. You’ve certainly done that with this post.
I love you. I’m proud of you. I’m inspired by you.
Hi my dear friend. Sword of Truth. I love that! And I’m beyond delighted you had such a huge take-away from my piece. You are a truth-sayer too. I think the first thing I loved about you when I first met you. Actually even before I met you when I read one of your articles, I respected your honesty. How refreshing. My Sword of Truth seems to be resonating, as I have had an incredible amount of outreach from readers who felt they could now ask for ‘support’ in addition to helping others. How amazing is that?
I love you too,can’t wait to see you soon. 🙂
Tell me when you are ready for that yin class, I will be right next to you. I may not physically be with you, but I will always be there for you in spirit.
No after what you are thinking about your body, you will always be pure grace to me no matter what this damn cancer did to you. Nothing can take that away!
Thank you for honoring me and allowing me to be part of your community.
I would be yinning the crap out of classes with you if we lived in the same town Maria! You have always been and still are one of my favorite people I know. I’m the super lucky one. I will honor you when I do get the green light to go to that class and I will tell you all about it 🙂
I am so sorry, Pamela. You are one strong, inspiring and strong person. Not many people are able to be so vulnerable — it really shows your strength and willingness to help and heal. xoxo, Cynthia
Thanks Cynthia. I’m hoping we can do a Mona/ Foundations class sometime soon when I get the green light. Would love to see you
Thank you for sharing so openly Pamela! Your honesty about your pain and suffering offers inspiration for us all. This is a terribly hard journey and I send you both love and admiration for your courage.
Thank you Mary Ellyn, I appreciate your words and thoughts. I always have had great respect for you since the first time I met you
Thank you for your honesty. I want to scream sometimes….I’m not back to normal! There is a new normal after breast cancer. My family doctor reminds me (when I get down) that I am a miracle. So are you Pamela, please remember that. We will never be the same as before, but we have gone through a huge battle and will never give up the fight. We ARE miracles! Sending love and prayers to you.
I know Becki right? I just want to scream sometimes too. I’ll be sending some positive vibes your way, sounds like we have shared some experiences. The not very fun ones either. Take care, you have someone here sending you love too 🙂
Patricia, you are a beautiful example of grace, honesty and dignity. My heart breaks reading your story, knowing I am helpless to offer you any more than my prayers and continued wish for relief from pain. And my friendship.
Hi Mary Claire, your kind thoughts, and friendship really do help and mean a great deal to me. Thank you 🙂
Pam, you know how I feel about you. Sharing your journey through this experience reveals your caring feelings, not only for helping others, but for yourself. Looking inside yourself and knowing what to do to make yourself feel better able to cope is a huge step forward. You have all my heartfelt wishes as you continue your journey. As I have said before, you are a wonderful “lady”.
Ah Lynda I just adore you. Thanks for the kind, kind words. And of course I hope I see you soon. 🙂
Pam-What an eye-opening article! Like most people, we have no idea that even though you may be “cancer free”, so many things remain. People need to stop taking their good health for granted. I would’ve never guessed you were still going through so much pain since you always seem so upbeat. I’ve always admired your fashion sense, your ability to be able to wear absolutely anything and make it look fabulous, your brains and your poker playing skills. I know you’ll rally back and hopefully feel better soon. And I’m positive Monty would never say you were a terrible wife :).
I’d say she’s an awesome wife. 🙂
A friend of mine about 10 years ago went through surgery and then radiation. I would pick her up and go to her appointments with her. The photograph reminded me of how difficult a protocol it is. Your words reminded me of how much she suffered. Thank you for sharing your experience. When I look back, I don’t think I acknowledged her pain in a “bearing witness” kind of way. When I think back to my experience with my friend, see your body in the photos and read your words, I am reminded of the power of simply acknowledging what you are going through and there is nothing I can do in this moment change it, but I can listen and have an open heart. I hope you have received some healing power in the act of so honestly describing your experience. I also hope that the compassion and empathy that this experience has given you is felt by others who are also suffering. May you be free from all forms of suffering Pamela. Thank you for opening your heart. Mine feels more open.
Hello Jill, so lovely to hear from. Thanks for commenting, and I am beyond thrilled I can help open eyes, thoughts and hearts. Especially one as big and warm as yours. I do hope to see you again soon. I would love to connect for some tea, yoga, the gallery? xo Pamela
Pamela…it has taken several days for me to think about and digest your words…there are many issues I could write about but what has stayed in my mind is how cancer is perceived and dealt with…America likes words like brave, war and cures…the war on drugs…the war on cancer…the war on poverty…after reading your vivid and painful description about what is really happening to you…i realize that these easy claims so frequently leave out the human factor in suffering…no matter the circumstances…your cancer may well be cured but the collateral damage to your body and psyche is ongoing and powerful…and many people do not like looking at the shambles that you have to now deal with by the moment…day…week…month and probably years… you may very well be cured…but the damage and pain from radiation…drugs…and the complications of Guillian-Barre’ are miserable and unending…somehow the miracles of modern medicine have to be combined anew with compassion…listening…and acting on the behalf of friends…family members…even strangers who are struggling with the losses visited upon them…I admired you from the first…and your decision to give us information about the reality of your situation only increases my esteem for you…I did tell you that I had some thoughts about the problem of body image…and I look forward to talking with you about it over sushi… keep your swagger going…it’s not easy…though all that intelligence and beauty has not disappeared…it’s just trying on new possibilities…Xxx
Natasha my friend. This is such an insightful observation and comment. I agree with you, we have some real systemic issues in caring for the patient beyond. It is such a big problem, and I mean big in scope and size. I spoke to my occupational therapist about it yesterday, (she agrees with us, has her ways of trying to help and resolve) . I’ll discuss with you. Maybe something I can do. Also looking to help with state level GBS advocacy, and patient support locally. It’s such a rare and unpopular disease with grueling, and unending symptoms like you said. I’m thinking on that too. I love your comment about my beauty and intelligence morphing into something new. So beautiful, thank you. I need to think of it in that positive way. So grateful you are in my life. See you soon 🙂 xoxoxo
We love you! Thank you for being so brave. You’re an incredible woman.
Ah thanks Kelly xo 🙂
Wow Pamela your story is incredible and it’s amazing that you’re sharing it since this is going to inspire someone else to keep pushing!
Thank you Qu.
Omg saw you on insta and this post articulates every emotion I have had – I’m going on five years and still have guilt because five months after I finished radiation a colleagues past away at 39 with a young child – I was there the day she died and watching what her family and friends were going through was horrific – I felt guilty that I was there – I didn’t have children it wasn’t fair to her or her family. Every thing you just shared I felt and I think if j had the ability to write – I couldn’t have done it any better. Especially how we look great on the outside and because people don’t see what your going through they think you are fine. I could go on and on – amaxing post.
Hi Ann , I’m so glad you liked my post, but sorry to hear you could relate so well. It’s so frustrating, and know I’m in your corner. I even passed this piece onto my family so they could better understand. It helped a lot, let them take the time to think about it, instead of either of us being on the spot. 5 years later…the guilt is crippling isn’t it? Know that you are allowed to feel bad, and sorry for yourself. It’s hard, but I let myself do it now. Thanks for commenting Ann, I really appreciate it, and SINCERELY wishing you the best. Pamela
How are you doing today, Pamela? I just found your post. I am only on week 3 of radiation and it’s already killing me. I have Lupus too, and I am really worried about things moving forward.
Thank you for your post. It can be a very lonely place dealing with all this breast cancer stuff, that we had no idea about and how it would affect our lives. I have been through all of this as well, I don’t even want to list it (now 7 years ago). I didn’t realize I was in pain until I wasnt. This affected my mood and how I related to my husband, family and friends. It is hard dealing with the world, socially and the people who can’t cope and trying to feel good about yourself, arh!!! I also suffer migraines and have been taking medication (Deralin) that started to wear off. I heard about a clinical study that produced good results. Since December 10 have been taking Mega B Vitamin once a day and 1xFeverfew capsule morning and one at night. Can’t believe I haven’t had a breakthrough migraine to date. The stress of dealing with all the crap in our head doesn’t help and my migraines got worse after chemotherapy. Anyway another thing to google. I felt like I would never get my life back on track, but I did, I still feel a bit crazy sometimes, but most of the time its good. I was actually googling lymphodema because of swelling on my arm and came across your post. Thats a good radiation burn you got. Hope its all healed now. Also other people talk about a little scar or pimple as if its the end of the world and sometimes its so hard to keep my mouth shut. Yet like you if I say how I really feel, I don’t always get even acknowledged as I guess its too confronting. The early menopause is a bloody shock as well and its not just hot flushes Im talking about. Got some treatment for that (luckily got included on a clinical trial) and was successful. Hope you are going well and thanks for making me feel I’m not the only one out there.
Debbie – Sydney, Australia
Thanks for checking out my blog! I hope you and your wife come back to visit! I’m so glad you and your wife are like newlyweds after 37 years of marriage. That is wonderful. But I would tell your wife that it isn’t too late to get her degree. Many colleges have many “non-traditional” students and allow for their busy schedules! She should check it out. Instead of waiting for that “right” time, she should take the plunge! L.D. teachers are always in demand! Keep me posted!Judy
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