It’s been such a rough few weeks. I’m going to keep this short. I’ve wanted to update and haven’t been able to… you know that means it’s been tough.
I’ve switched chemo. Taxol wasn’t doing what it should/had hoped. So we have changed plans.
Last week I started a three week course of Carboplatin and Gemzar (both drugs are given the first week, just Gemzar the second week, third week is a break week in my particular plan). We may have to modify this because the fatigue and steroid crash have been giving me a really hard time.
Taxol wasn’t doing a great job but the scans show that radiation did a good job on the tumors in my spine and hips. There are others that we are watching in bones and will monitor them. Now we also go to work on liver tumors and when they shrink down we will radiate (ablate) those. It’s always like Whack-a-Mole. Something drops down and something pops up. You try until you find something that works.
I still have problems with my esophagus from the radiation. Each chemo session aggravates it and it gets hard to talk. Thankfully it’s not too painful. But it does flare each week and means no talking on phone and not much in person. It does affect eating as well.
I haven’t been able to be out much at all, just a few times in the last few month, usually on days when steroids are giving me a boost or I need to be at a doctor’s office for fluids to prevent dehydration. I’m sleeping a lot… sometimes for literally days at a time and trying to let my body work through this. There’s no other choice. I wish I could be doing more with my family. But I hope they know I am doing the best I can, admittedly not so much right now.
I can’t truly explain how debilitating the feeling is: needing a nap after a shower, sleeping for most of the day and then sleeping right through the night, trying to decide how many times it’s manageable to get up to go to the bathroom. But we will keep working to find a way to get through it. The radiation with chemo right on its heels is still knocking me back even months later, as are ongoing chemo treatments.
I’m so grateful for the rides, help from friends, and delivered meals that keep things going. I couldn’t do it without the friends that drive the kids to school and bus stop daily, take me to doctors’ appointments on the spur of the moment for IV fluids, and those who offer assorted favors. I need you more than you know and am grateful to those who offer. I am not answering most emails at this point but I do read them.
Thank you.
Link to Twitter
Thinking of you. Sending hugs.
Thank you for updating us. I’m thinking of you and praying you get strength and relief.
Oh dear dear Lisa. I wish I were close so I could help out with rides and such. Sleep when you need to, my dear. I hope the new regime brings some relief and reduces the fatigue.
Humbled to know you. Many kisses.
Much love. More than that. Much more love.
Your a tough chica!!! I am totally in awe! And a amazing fighter!
You have an amazing cheering section. Anything we can do would delight us.
Thinking of you.
DearerLisa, Thanks for the update! I think of you each day and send prayers and good thoughts your direction. Love, Meg
Thank you for sharing your journey – your description of the reality of chemo and dealing with cancer is matter fact and heart rending at the same time. If there can be any peace to you in upcoming days I wish it for you.
Lisa.
Reading your entry brought me back to my chemo radiation for recurrent lung cancer. I am so sorry you are going through this misery.
When the weight of your body on your legs astounds you when you finally muster the energy, physical and psychic, to get out of bed to pee.
I used to describe it: take your worst flu and your worse hangover, combine and multiply by 100. I couldnt wait to take my next dose of liquid morphine for the esophagitis.
It did take many months, but I did get stronger. I still sometimes have slight swallowing issues, but…war wound.
I viewed the constant sleeping as restorative.
I hope it helps to know I got through it. So it is doable although I’m sure there are times you can’t believe it.
Best wishes,
Stacy
A lovely response, Stacy. I hope Lisa was able to take some comfort from your experience. I sincerely hope you are well now. Take care.
Sending you, your family and your entire support network so much love, positive thoughts and healing right now.
Thank you for the update, think about you often and am always wishing for the best.
Some very haunting memories here,Lisa. But I admire your courage and strength. I hope the new chemo works,carboplatin is a strong defense and the fact you are still able to get radiation at all is also a positive despite it making you feel like poo. You have a good inner circle….*s*
I am so sorry that this is so hard — your courage is extraordinary. Sending good thoughts, hope, love and virtual hugs to you.
Hi, Lisa. Sending caring thoughts and affection your way. I appreciate you. xoxox
I’m in awe of your spirit and I am joining the many, many people who are praying for you around the world.
Follow your blog, you are so amazing in your strength and ability to help and care for others during this horrible health trial. Praying for you.
Lisa- I feel so dang sorry for what you are going through. I know you don’t pray, but I am praying for some kind of relief for you. As winter turns to spring, I will keep thinking of you and maybe a sprig of spring will be felt by you. Many hugs for you my online friend. If I had a pair of red heels, I would wear them in honor of you 🙂
Thinking of you always,
Kristin xxoo
I know that if anyone can come out on the other side of this it’s you. Your strength and courage never cease to amaze me. Thank you for writing to us even when we should be the last thing on your mind. Just know you are NEVER the last thing on our minds either. You are thought of and admired daily. Hugs xxxx
Lots of love, Lisa
Your courage is a source of great inspiration. I hope you’ll feel stronger soon and can get outside with friends and family to enjoy spring blooms and warmth of the sun.
I’m in New Mexico at a juicing detox week. I’ve learned so much and feel very good. I have BC mets to bones also. I am on affinitor and exestreme also. Hang in there til we have new things coming along. HOPE is all we can do.
If there is anything, absolutely anything, I can do for you ( I will come to you if you need help or will help from afar–or if you need assistance in any way- with anything), please let me know.
Sending love, J
Lisa,
This sounds like such a rough time. I am so sorry to hear.
When I had chemo fatigue like you are describing, my doctors gave me Ritalin. It gave me a half a day of energy. I don’t know if it’s contraindicated for you but I thought I would throw it out there.
Wishing you some more good moments in the coming days.
Thinking of you with regularity, Lisa. I am so sorry you’ve been knocked off your feet. Warm, beautiful wishes…
Your obvious decline in activity has been felt by all of us. Your hoard of Twitter followers miss you. I really hope your treatment and some rest will give you renewed energy. Take care of yourself and please write when you feel up to it.
We love you greatly!
As always, thank you for the update, Lisa. Sending you hugs from afar. Glad to hear the radiation is having good effect. Can’t even imagine the fatigue and pain. Know that people care, ok?
I wish you comfort and peace! I have not been in your position, but, unfortunately, very close family members have dealt with chemo and full body radiation. I have found comfort in your postings over the year or so since I found your website. I truly wish you and your family all the best… always!
Sending love. xoxo ssarah
you are truly an inspiration. My daughter was diagnosed with stage II breast cancer, grade 3. Your courage, and continued spirit allows me to keep going one step at a time. These are tough times!
rocky
I think you’re amazing for having the clarity to write such a profound post! Carboplatin is the devil I truly believe. I had such a bad reaction to it, my oncologist had to adjust the dosage she was giving me. I don’t think people understand that it isn’t a typical kind of tired when you are sick. This tired is something that takes over and comes from the inside out. It’s so hard to explain. I am so glad I connected with you on twitter, and I hope to meet you some day! Keep fighting as I am sure your supporters are fighting for you too! God Bless
Tell your children you have a new nickname: Sleeping Beauty. 🙂
Rest, rest, and rest some more.
Spring will wait.
Thanks for the update, Lisa. It has been ‘quiet’ on Twitter without you!
The post-steroid crash is a bit brutal, I’ve seen it with my husband. He sleeps a lot these days, but as someone else said, the sleep is restorative.
As always, my thoughts are with you.
xxxx
Love and light to you Lisa.
Lisa, I’ve been thinking about you and it made my morning to read your update. You are hanging in there and I so admire your strength and spirit. You have such a community surrounding you with love, strength, and hugs. Sending more hugs to you now!
Thank you for this update. I’m so sorry you have to go through this, but I hope that soon your body will adjust to your new normal, and you will feel better and be able to spend more time with your family. Know that you are loved and thought of constantly.
Prayers and best thoughts for some mental peace during this time. Know that we all are thinking of you and wish we could help ease your burden. Prayers too, to those doctors and health care folks – that they have the wisdom and best tools to help you. Much love and hugs to you and the family.
Sending you so much love, and desperately wishing there was something else I could do or send. xox
Dear Lisa
Since I found your blog about a month ago you have been in my prayers every night. I wish I could take some of your pain away but all I can do is pray. Love to you and your family.
Nancy
I admire the strength you demonstrate in such adversity. Wishing you better days to come as body adjusts and hoping for shrinkage of tumours/lesions. Of course, my main wish for you (fingers crossed) is time. LOTS of it! Always keep thinking the very positive thoughts.
I think every person who has gone through treatment for cancer understands, even if only a little bit, the all encompassing tiredness that you are feeling. I’m sure your friends and family understand, support, and really only wish they could do more. Just keep doing whatever you have to do to get yourself through the bad days so you can enjoy the good ones.
Of this I am sure: Your family knows how much you would rather be with them. I hope for comfort for you, and send lots of love.
Oh Lisa, my heart aches for you. Im sure you hate these horrible weeks of barely being awake long enough to say hi to your family, pee, drink something, and fall back to sleep. I’m wishing I could make you a meal or drive your kids, or just watch a TV movie next to you while you sleep. I’m too far (and too much a stranger) to do those things but I can cheer you on and love you from afar. You’re so very brave to share the details (and reality) of stage 4 cancer.
Thinking of you all the time!!! Thank you for the update… Lots of love to you.
We don’t know each other, although I’ve been following your story for so long that I feel as though we are friends. I just wanted to say that your courage and strength inspire me everyday, Lisa. Sending you hope and love from afar. Hope you are finding bits of beauty in your dreams.
Bless the folks who are close enough to be able to help you on a daily basis. They are gold. If sleep is what your body asks for – respond eagerly.
I’ve experienced steroid withdrawal and assume you too have struggled with the depression. It’s a bitch! Such a relief when it lifts. I’m sure not getting out contributes to the angst. Spring will be here soon. In the meantime, hug the corgi, rest and know you are in our hearts.
So sorry it has been rough going. My thoughts are with you.
Thank you for the update.
I am so sorry that things are so difficult. Hopefully, you will finally find a treatment plan that will work. I know well the tiredness. Glad that you are surrounded by your family and friends.
Thank you for finding the strength to give us an update. I am glad you have a good inner circle to support you and your family during this journey. Sending many thoughts of comfort to you, your husband, and your kids.
You’re always in my heart and never far from my thoughts.
Know that you and your family are in my prayers. Whatever you do don’t try to do more that you feel up to…even if it is just getting up to go to the bathroom….sleep is great for the body. I found that out when I had chemo. Someone once told me that God doesn’t ever give us more that we can handle. So continued prayer for you.
Thanks for your wishes but I can’t disagree more with your statement that you are only given what you can handle. It’s one of the things most people with serious illnesses dislike hearing most actually. If it helps you that’s fine but being told you are being “given this because you can handle it” is just a terrible and illogical thought. People have psychotic breaks, get pushed to their limits, beg to die … In any number of ways people’s lives are “too much.” Again, I can definitely report that it’s one of the statements that those with serious situations (illness or other) always report that they dislike hearing the most. It basically blames the person who is suffering and tells them there is a reason for their situation — they somehow have brought it on themselves by being “able to handle it.” That’s a terrible message to give. And untrue.
And that extends to the caregivers as well..a lot of marriages and relationships are ruined by this illness. The pressure of both the patient and the caregiver who watching their loved die is immense. My wife took three years to die and I can tell you,it was heartbreaking and life changing in a very harsh way. God won’t give you more to handle,huh..well he took our life,how does one handle that?
I add my well wishes to the millions being sent your way. Words are inadequate to express how much we love and support you. You have many friends out here. While we love hearing from you, please don’t cause yourself any unnecessary pain. We all understand.
Hugs,
Tai
Lisa, thank you for spending some of your precious energy to let us know how you are. We haven’t met but I look forward to your blog posts because of your beautiful, raw writing. I will send positive energies toward you and your family as you work through this stage of your treatment.
You give incredible meaning to living one day at a time. You inspire my life.
You’ve been on my mind ~ thanks for the update. Hope you find strength soon and are able to enjoy your children and life.
Thinking of you as you travel through this difficult time. I put up your wonderful quote on my blog yesterday and think of it every day.
Always in my thoughts and always happy to see an update from you. I am hoping that things return to a degree of homeostasis so that you are better able to be with your loved ones in a way that is meaningful to you.
Thanks for the update. I know it took some energy to even write this. We will use that information to keep you in our thoughts and prayers. Sending love and hugs.
Sending love and comforting thoughts you way.
I’ve been thinking about the unexpectedness of life lately–so much of what is good and also what is gutting is out of our control. People I love have been going through some huge challenges lately, not of their own making, and I’ve begun to think that all we can hope for is to respond to what comes our way with as much strength and love and grace as we possibly can.
You, my dear, are ALL strength and love and grace. I hope you have more days soon when you can feel that way. But even when you don’t, it’s shining through.
Sending love and admiration from afar. xox
–Tara
Lisa, your words about hope, optimism and beauty inspire me every day. It breaks my heart that you’re having such a tough time. Remember that just when winter seems the longest, the first flowers of spring appear as if by magic.
Thank you so much for keeping us posted. I am so sorry you are having a rough time as I know that the radiation really makes you so tired. Hoping the new chemo of carboplatin and gemzar works and the liver gets under control. Most of all sending you tons of good wishes with love and light.
thank you for sharing.
My heart is breaking wide open right now. I just want to cry. No one should have to go through this ordeal. I just don’t feel like there is anything good that I can say, so I’ve mostly been silently lately. I want to comfort you and hold you and tell you that it will be ok but no one knows that. I want to say, tomorrow is another day and you will feel better. We don’t know if that is true. We all appreciate the updates more than you know because we are all so very worried about you. A minute doesn’t go by where you are not in my thoughts. I hope and pray that the next update you have relief from the meds. I know you want this too. I am so very sorry you are going through this. I love you so very much. If you need anything at all. I am just a phone call away. You can call on me anytime. xoxo
Despite your suffering, I am relieved to see that you’re well enough to post. I look to and pray for the day when your treatments return you to a stable phase of at least non-progression (which I’m hoping for myself, too) when you can return to a more active life for yourself and with your family and friends.
Glad to see your post…always hoping for better news for you. Take care.
Thank you for sharing your journey. It helps to read about turns our road may take along the way… I so hope your next bend in the road is gentler and kinder and you feel better!
I am after stumbling across your blog and lost for words right now. You are a role model to us all. Having watched my mom go through cancer, I am always in awe of the bravery and sheer utter determination demonstrated to continue fighting for yourself and those that you love…you are a true lady…xoxo
Hi Lisa,
Thanks for the update. You are always on my mind and I continue to send strength your way. You push me to find beauty in every day. Thank you for that!
Lisa Boone
Glad you felt well enough to post an update. Everything about cancer sucks, no question. Carbo and Gemzar is a tough road, God’s blessings to you as you continue the journey.
Thanks for sharing your story.
~D.
I dedicate this sunny, warm, blue-skied, Southern California day to you. I think of you on gorgeous days like today and am so grateful to have your words to read and share.
Sending my best thoughts that today was a good day to you.
Thank you for sharing your journey. I don’t think I can say thank you enough times or ways! One of the terrible parts of cancer, I think, is the aloneness. Suddenly this wall goes up between you and all the rest of the world, all of the healthy people. Blogs like yours change that completely. Thank you. Feel better.
I am glad to have come across your blog. I was diagnosed at Stage III in 2007, at only 31. No family history. Just me. I had my breasts removed, went through TAC chemo, had radiation – everything I was supposed to do. My life was ruined, my body, my career, my fertility. Confidence, hope, everything. In 2011, it was discovered in my spine and pelvis. Any hope for normal was gone, for good, this time. Treatment for life.
Since 2011, I’ve gone through pretty much everything. The only two options left to me are the Afinitor/Aromasin combo and a chemo pill. Xeloda; I believe. I’ve been on Faslodex for the last year or so, but I know I have to change treatment, again. Today, a pleural effusion was discovered on the bottom of my left lung. Another failed option. I had such hopes for the Faslodex, because of its general lack of side effects. Now, I am afraid of mouth sores from the A/A and some hand/foot thing the chemo pill can cause.
I’m a single mother. Paid into Social Security for, what, 15 years? What I receive couldn’t keep one person afloat anywhere someone wants to live. I work two jobs (one of them bartending in a bar full of smoke because I have no choice) and go to school to learn something I am hoping to supplement my income with. Who has an IRA when they’re 31? Life insurance? And, being forced to take contract-based work because real jobs around here are so scarce, I had no benefits. So, no 401K (or health insurance, for that matter, which might have saved my life, had I been able to go to the hospital WHEN I FOUND THE LUMP, instead of several months later, when I could afford it).
I have always been a good person and hard worker, lived my life in such a way that I was comfortable with who I am. I look around and see rude, horrible, HEALTHY people, with good jobs and homes and lives. I just really don’t even have time for this illness!!!! I have to provide for my daughter. I’ve been wanting to see if any further reconstruction could help me feel better about myself enough to start dating again. But, I don’t want to take the time off. My oncologist knows that I don’t want IV chemo any time soon, moreso because of the simple reason that I can’t be a bald bartender. And, I need to be able to work. I am already always exhausted. This PE has me wondering what he will say on Monday. The scan didn’t show an actual tumor in my lungs, but the PE’s presence alone means my cancer is progressing.
This illness is evil. Pure evil. I spent my 20’s trying to build a life for my daughter, searching for the job that would allow me to be as independent on the outside and I am on the inside. My 30’s were simply stolen from me. I’m stuck in a dorm size bedroom at age 39, with most of my things in storage. I have boxes I haven’t opened in a decade. This cannot be my whole life. A whole life after one goal. I’ve earned a life a thousand times over. I’ve always had to scratch, bleed, and crawl for things that fell on everyone else’s lap. When I was diagnosed, I felt like I was on a show. I felt like, how can this burden fit on my already full plate? Why can’t I just get to ZERO? I just want to be able to get to the starting line! To want the SAME goal for 20 years is debilitating.
The point is, I feel your anger. Reading your blog, I read so many things I’ve said myself. I feel so bad for you and I fear your road is the next one for me. I know I sound like everything is only bad. This is not so. I have an awesome support group, great family and friends. My mom and daughter are my best friends, and we do so much together. Movies, shows, plays, concerts (many concerts!), comedy shows. IIIIIIII stole 2013 from my cancer. I hoped to steal 2014, too. Now, I am not so sure.
It is not death that makes my heart palpitate. It is having not lived. Feeling like a failure. Never wearing a wedding dress. Never owning a home or being the only name on the lease and being surrounded by MY things. Just living in enough space to be living. I want to feel like I was here. Like I was an equal. I don’t want to just evaporate. In a large way, just finally having my own home and space to open those boxes and go through them is preamble to getting my things in order. I don’t want to have spent my life feeling like a burden and leave that one, too.
I hadn’t meant to go on and on. I know I’m all over the place. I always proofread things like this and organize it, but I will leave it in this raw form. I think I’ve pent all of this up inside for too long. It was therapeutic to vent here. I will be attending the LBBC conference in Philadelphia this month. I believe I need to be in the company of people like me. I am surrounded by healthy people, and the isolation has been gripping me.
God bless you and your family. I hope your new chemo combo works for a good, long time.
–Another sister
Sending you some extra energy, wonderful moments of looking at beautiful flowers and gentle hugs. Thinking of you as always Lisa. xo
Nice to hear all about your courageous journey about cancer and glad to know that you have succeeded in the journey with confidence.
Thinking of you. I follow you on Twitter. Praying for you and your family. Hugs!
I think of you often, in a cool breeze on this warm summer day, in the hummingbirds in the kangaroo paw outside my window, in yet another message from a friend recently diagnosed with breast cancer.
Sending you light, love, and warmth from sunny So CA.
Oh how my heart goes out to you and your family. I have spent most of the weekend reading your blog. I was diagnosed with stage III IDC April 18, 2013. I lost my daughter in the process. I had just been matched after two years in the adoption process. Now I will never get to be a mum. I am at a very high risk of recurrence and live in fear. There is not a day that goes by that I don’t think of it. I worry most about leaving my parents and sister behind and what my death will do to them. Thank you for the post on your oophorectomy. I too am on Tamoxifen and Zoladex as my Estrogen and progesterone levels were off the charts. I am living with constant hot flashes that leave me with sweat pouring off me, soaking wet, feeling nausea and with my heart racing. Then there are the night sweats!!! My MO has flatly refused to consider ovary removal. I have been on Tamoxifen for 4 months and Zoladex for three. I am taking a risk experimenting with no Zoladex this month but symptoms seem to be getting worse. I had begged for ovary removal but after reading your experience with it am reconsidering! I don’t know how I will tolerate the Zoladex and Tamoxifen, one for 2-3 years, the other for ten. My surgeon would only remove the cancerous breast, I pleaded with her to take the other but up here in Canada everything is about money and time and what our gov’t funds. I think I am going to try and see how much it would cost to have it removed in the USA.
Anyway, enough about my story! I am so sorry to learn of your stage four. You are an inspiration to all those of us with breast cancer and have taught a lot of people a lot. I also liked your post about what not to say! I would add to that list, “it is what is”. I had this said to me about losing my daughter because of the BC and it hurt.
Prayers, best wishes and many positive thoughts being sent your way. I pray you are able to find as much comfort as possible at the present, comfort in control of pain, comfort from family and close friends, and comfort in knowing you have touched the lives if many, many women and men by sharing your story.
Love and hugs,
Elizabeth
P.S. My cancer was missed on repeated annual mammograms due to dense breast tissue.
http://doyouhavedensebreasts.blogspot.ca
http://www.areyoudense.org
I came onto your website hoping that I missed an update…. hoping that things were taking an upswing… I am sad to realize that I didn’t miss one. Please know that I am thinking of you and wishing you comfort… wishing you a warm smile and a kiss from someone you love… a kind word from an old friend. You have touched my life, even though we have never met. I will always think of you when I look at this one specific tree over the Conestoga Creek. It bends and twists forcing it’s way into the light and away from the banks… even though this isn’t how trees are suppossed to grow… it is what makes it beautiful. Thanks for sharing your journey. ((Hugs))
New here and newish to living with cancer at first hand, but deeply grateful for your candor and strength (especially the strength you show in “weakness”). Just wanted to join others here in letting you know that you’re sparking new connections all the time and in wishing you more light, more grace, more beauty in the thick of your struggle.
Lisa, there is always hope. Just pray and believe in God.. for him nothing is impossible. He owns everything in this world even that cancer you have, and he’s the only one who can take that back away from you. God bless you.
kary jane
I would never try to tell someone who believes to change their religious beliefs so advice to pray and believe in God when I don’t is not advice I feel is appropriate. We each have our ways of dealing and religion is not one of mine. Telling someone their religious belief (or lack thereof) is “wrong” and yours is better, they should do what you do, is definitely something I put in the “no” column of things to do to be supportive is someone. I wish you the best but don’t recommend proclaiming you know what’s right for others. We can only know what’s right for ourselves.