Hi everyone… finally an update. I know I have been quiet. As you probably assumed, it has been a very difficult month. I finished whole brain radiation (and I needed to add the C2 vertebrae) and liver radiation a month ago. The brain and liver were two week regimens each but the start times were staggered so it took three weeks to complete. I was having trouble with my magnesium and potassium levels and those needed to be addressed. As a result I needed to be at Sloan-Kettering every weekday for more than 30 straight days between radiation and the aftermath. It was quite a schedule.
In the last few weeks my problem became swelling (edema) from inflammation from the liver radiation. My abdomen was shockingly distended and that was causing me trouble with discomfort and moving around.
I have had fatigue but it hasn’t been the sleeping-all-day form that I was warned might happen with the brain radiation. Fatigue encompasses more than just “tiredness.” For me the fatigue has been more weighted on weakness. I have had a lot of trouble walking and doing steps. I’ve needed to use a wheelchair at SK for a few weeks now. That shouldn’t last much longer as I get stronger to walk distances again. But on the bad days I couldn’t get more than down to the car for my ride.
I started Epirubicin for my chemotherapy a few days after radiation finished in December. It is dosed based on liver function so the dose has been adjusted each week as we see how my liver is doing post-radiation. I was able to get three straight weekly doses. This current week has been my “off” week; my blood counts are low from three straight weeks of chemo (to be expected in anyone getting it) so a week off is always given for the body to hopefully make enough the replenishment cells of different types.
The magnesium and potassium as of this week are finally holding with home management and no IV supplementation. A helpful tip: the low sodium form of V8 has huge quantities of potassium. Most people think of OJ or a banana to supplement. Only 8 oz of it contain 900 mg of potassium. I drink a few a day, just make sure it is the low sodium version though.
I’ve now tapered totally off the very low steroid dose I had been on for months. Steroids can make your legs very weak if you take them for an extended period of time so it is good to be able to remove them from the equation.
I only needed to go to SK for one trip this week. Diuretics have helped with the edema, each day I see and adjust the dose. I do not have pain beyond what is caused by the fluid around the liver. I do not take any pain pills and haven’t needed them during radiation. I have not had any headaches or neurological issues yet from the brain radiation which is probably due to the fact that my lesions were so small and the low dose of steroids. I am still winning a bunch of my Words with Friends games too! The last time I was able to leave the house to go somewhere except to go to Sloan-Kettering was Thanksgiving. That boggles my mind.
I think this week has been a turning point. I am hopeful the major acute radiation effects are waning. No clue what lies ahead with the delayed ones but I don’t focus on that. For now I will be working on strength (after being basically bedridden for a month) and trying to get more function back. It is a process.
If all goes well I will start a new chemo cycle next week. Radiation effectiveness can’t be assessed immediately so we will do preliminary scans in a few weeks. (I finished on 12/19). Each day is different and I can’t predict how I will feel. But that seems to be the way life will be for me now. I long ago adjusted to that.
I am grateful for all of the support and concern shown over the last month from you, I understandably wasn’t able to return many messages. This past month was really about just getting through. The energy I did have was spent making sure the kids were able to maintain their usual schedules and we made it. Friends who have helped with rides and meals: thank you.
The poppy photo above is from my garden a few years ago… I’m already anxious for Spring to get here. xo
Link to Twitter
Turning point. I like that. Here’s to you getting stronger and enjoying those Spring flowers!
Cheering you on as you recover! Hope today is one of the good days.
their distrust of you before they tell you. Pay attention!4. Customer EnenagmeatHgrder to create metrics around this, too, but you can tie this back to actual behavior. When customers visit your web site,
anch'io sono molto basic nel make-up, ho giusto un po' più ombretti di te (hihi) ma mi limito comunque ai neutri. ormai sono fondotinta minerale addicted, uso quello di neve che con la nuova formulazione è ultracoprente (se usato col pennello umido, Sara provalo!), pensa che ho addirittura abolito il correttore sulle imperfezioni perché mi sembra artificiale…altro che tutorials su youtube
Thanks, Alex! Have you ever looked at Aaron Lazar’s books that cross the YA line such as “Tremolo” — not quite Children’s War topic, but close.
It’s good to see an update, as difficult as it is to know that you have been through such hell. I sincerely hope a respite from these side effects is in your future.
Here’s to spring! xo
Sending huge hugs and lots of love, LIsa.
Thanks for the update, Lisa. I think of you so much and you definitely help me more than you know. Yes, each day is different and we do adjust to this lack of control, you clearly explain and I do understand. The poppy photo cheers us up as does your taking the time to write, and write so very beautifully Thank you
Thank you for the update, Lisa. You’ve been in my thoughts through this latest twist in your journey. Always a relief to see you active on social media.
Love the new look! I love white backgrounds. Very clean and crisp, like an iced cold ChyyckChickiBaby margarita on a sweltering hot southern day…just sayin’
That’s a nicely made answer to a challenging question
After read few of the blogposts on your site now, and I truly like your style of blogging. I added it to my favorites web site list and will be checking back soon. Please check out my site too and let me know your opinion.
“When setting personal goals, don’t be afraid to think big.”I remember someone saying that it’s easier to make $100,000 per year rather that $10,000 because you work with a totally different mindset..-= Oscar – freestyle mind´s last blog .. =-.
What are you stating, man? I know everyones got their own opinion, but really? Listen, your blog is cool. I like the work you put into it, particularly with the vids and the pics. But, come on. Theres gotta be a better way to say this, a way that doesnt make it seem like most people here is stupid!
My mind is, admittedly, mush to the “the [insert nationality here]…” borderline racism. I used to be rather sensitive to it, but somewhere between my first and second year here, and getting married to a Chinese woman… it’s all gone to hell.
Good to hear from you, Lisa. Wishing you the best always.
always grateful for the updates…glad to see you are on an upswing of sorts. xoxo
I was so happy to receive your update. I look forward to them. Thank you!!
From England
Just to stay you are an amazing lady – if I just had a tiny bit of your resolve, determination and fighting spirit to keep going in the face of such adversity, I would be ruling the world. Here in the UK, we have a campaign running on TV in the ads, for Cancer Research and the strap line is: ‘Cancer we’re coming to get you’ and you are sure doing that Lisa – keep fighting! Sending you warm hugs.
Best to you and your family.
Lisa–I was worried, not having an update in so long, but it does sound like you are taking a turn for the better! Keep it up, and hopefully I’ll see you at a baseball game in the Spring!
Hugs to you. I hope you continue to feel better. I ‘know’ fatigue quite well and can sympathize on that level.
Lisa, I was so worried because you were (understandably) “missing” for such a long time. What a relief to know you finished the brain and neck radiation and have started to shed some of the worst side effects. May that trend continue! Yes, spring is coming. Focus on the crocus and daffodils! Sending you love.
I send you love. I know that the treatment has been rough and the side effects ahead are unknown, but I really hope it leads to lots of good months ahead. As someone who follows your writings, I am so impressed with how gracefully you held up during this incredibly difficult treatment run.
Thank you for the update!
You have been in my thoughts so much. I’m glad you were able to take a break from daily hospital visits. Wishing you all the best, with extra strength. xo
May your strength return quickly!!
Lisa, I don’t know if it is a term you like, but Girl, you are a Fighter! You are not bowing to this cancer crap! Your perseverance is a victory in itself. I don’t know what your days are like. I do know the concept of just trying to “get through” each day, hour, moment. That is what you are doing as gracefully as you can. So much love to you, my friend!
*Hugs* One day at a time. I am anxious for spring too! Not sure why I live in a place with winter!
Sounds like you have made it through another cancadventure. The only good thing about them is that you are likely to meet some amazing people along the way. Glad you have been able to wean off pain meds. I am likely starting some radiation on thoracic spine. I would love to get off pain meds–it messes with my digestion!
Hi Lisa. I’ve been following your story. You are an inspiration. I wish the very best for you. I’ll continue to keep you and your family in my prayers.
Been thinking of you a lot lately Lisa. It must be so frustrating to not get out of the house except for appointments. I hope you get some energy back soon so you can enjoy some time with your husband and kids.
I have been reading your posts for over a year now. You are truly an inspiration Lisa. I went through chemo and surgeries 3 years ago for breast cancer and as a mother as well I know the worry you have for your children. You are such an amazing role model and I pray that you continue to heal. Thank you for keeping us up to date with your progress. You will somehow get through this and I will keep you and your family in my thoughts and prayers.
Lisa, good to see you post after such a tough month. I have learned so much from you over the past few months about cancer, treatments, life, and love. Your commitment to ensure your husband and children went on their planned vacation is a testament the selflessness you have even in your time of greatest need.
You are a magnificent force of nature. And I’m grateful to know you, even if only *this* way. Xox
SO hoping that the turnaround brings you some more energy and a chance to enjoy the love that surrounds you. Sending mine.
I am anxious to see spring again too. The beauty and warmth of spring is one of life’s wonderful pleasures.
Dear Lisa, I am glad to read you again. What a tough month you had. I hope you have less frequent hospital visites now, so that you can enjoy the warmth of your family and the beauty of your garden. I love the poppy!
So good to see you writing. I sincerely hope things will constantly improve from here on and that you`ll be feeling stronger and more yourself everyday.
From Montreal, Canada
Good to hear from you. Wish you to get all the energy needed to go through this. you are a very strong woman!
Wow Lisa…… so good to hear from you, just the other day I logged on to your website just to make sure you were OK….I’m not on Twitter or facebook or anything like that….but I did check your blog just to make sure you were OK…couldn’t make sense of your posts but was very relieved just to know you were still tweeting (or whatever they call it !) am so happy you’ve posted…keep well and keep strong…sending lots of love across from England xxxxxxxx
Hugs.
What a wonderful thing to see your update. So thankful that you’re sharing your journey. Always sending you the best possible thoughts!
So happy to read your update. You’re such an inspiration! I wish you continued strength and comfort.
Your post is sprinkled with doses of the hard reality but also filled with the awesome power of your positive thinking: “this shouldn’t last much longer;” “getting stronger to walk distances again;” “good to be able to remove them (steroids) from the equation;” “I do not take any pain pills:” “still winning bunch of Words With Friends games:” “this week has been a turning point;” “I don’t focus on that;” “I will be working on strength and function. It is a process;” “Each day is different and I can’t predict how I will feel. I long ago adjusted to that;” “I am grateful;” The energy I did have was spent (on kids;” “anxious for spring.” Yours is a life that is being well-lived. Not only are you here for your family but you are certainly making a huge impact on the power of positive thinking to sustain, create, and heal as well as leaps forward in the medical treatment of your specific cancer. I am joined in your virtual cyberspace community that is awe-inspired!!!!
So great to hear your voice again. Wishing you strength and increasing vitality each day! Only six more weeks till March!
Well I guess I don’t have to spend the weekend firgniug this one out!
zarSeptember 18, 2012Thanks for writing this Christine! been a big fan from day, me, the wife, and the four kids all love you. my top picks were you, Josh, Frank, and Becky. My little son wanted Becky to win, my daughters wanted frank to win, my wife wanted you to win, and I wanted to see you and josh in the final and it happened! thanks so much again Christine, you are amazing.
Bussigt att tänka på alla våra överbelastade kvinnliga lärarae och professorer! Frågan blir väl i så fall bara varför det alltid finns så många män som inte är överbelastade?
*zoomien: coulda, woulda, shoulda!! du har så rett, så rett*nadja: tusen takk! håper det går bra med anti-nattamming;)vigdis*
Thank you for the update and the valued information. I hope you will continue to gain strength in the upcoming days and weeks. Your messages are very clear and I value what you have taught me……live and share the beauty of life and love each day. You are changing many lives for the better.
Go Lisa. Just. Go. You inspire, humble and warm my heart. I’m so glad there are people like you to balance people like me. The world is just amazing and beautiful. But I dream of leaving it, for reasons I won’t go into, but I love and act with all my heart, then withdraw and dream of what lies behind the veil. You love and act with all your heart, and fight to stay. I wouldn’t change either of us, we are who we are and that is exactly right and as it should be, but I celebrate you, am grateful for you: you bring me such joy. Thank you.
Always glad to see a update, Lisa, you are a constant inspiration.
So good to hear from you, Lisa. I too am looking forward to spring. I am hopeful that the next few weeks allow you to recover your strength so you can enjoy the season.
Lisa,
I do not know you or your family personally but I have stumbled upon your blog today and I have read many posts. I absolutely love the ones about how to support someone with cancer, stupid things people say, cancer is not a gift, things do not happen for a reason, and about the challenging, brave, and powerful conversations with your children. I completely agree with you and I love the eloquent words you use to express yourself and take readers along your journey. I hope you feel the love and support from family, friends, and complete strangers. I will be thinking of you and your family!
Sincerely,
Erica
lisa, thank you for your writings. my best friend and i both have grown children with the same kind of cancer. both stage 4. nothing we can do about it, but it’s comforting to read of your fight and we both wish you well. no words. sorry.
I can really feel your personality in this post. Loved your Words With Friend comment! May you find beauty each day, just as you remind us on Twitter.
Yeah! to hearing from you. Yeah! to feeling maybe a little stronger. Knowing you will savor any moment w/ your loved ones. Always cheering for you. 🙂
In the cotcilpamed world we live in, it’s good to find simple solutions.
LIMA telah beberapa kali diadakan.Teringin sekali nak kesana. Tapi budgetnya? Saya nak cadangkan kepada Kelab Sukan yang akan meeting esok 8.2.2013. Tumpuan lawatan lebih kepada LIMA.Bagaimana dgn penginapan sekiranya terdapat wanita.stk
mówi:Wsapaniale! Czy mozesz coś opowiedzieć o tym, w jaki sposob zostałaś przygotowana do pracy Tutora? Czego mogą się spodziewać osoby, które chcą się zająć wolontariatem?
Yeah, she is absolutely fantastic.I see her all over the place on other blogs.Now that chick's got style. ;)You two actually look very similar – both babes. 😉
Thanks for the update. Hope things continue to get better and better.
Hello Lisa,
Wishing you all the courage in these moments of trial . Your blog has been a source of strength to me in my wife’s treatment for metastatic breast cancer, which is continuing. May the force be with you . .
I was so glad to see your update. I hope you’re feeling stronger every day. So many of us in the MBC community continue to think of you often and wish you the very best.
Hello Lisa,
I was so glad to find your blog. I’ve said some pretty stupid things to some people at very difficult times in their lives. My step-daughter just finished having a double mastectomy, chemo and radiation. We all thought that she was on the road to gaining her strength and getting back to a “normal” life for a newly married 29 year old. Just found out, the cancer spread to her blood/bones. I didn’t/don’t want to say stupid things, thank you for the “heads up” on what would be really stupid to say. Koodoos to you for taking the time and strength to share with strangers.
My wife at 30 had a double masectomy and chemo and after a year the cancer had spread to her lungs now its in her brain, (her lungs are clear through chemo, supplements and juicing). Yet they “caught it early” too bad the conventional medical system doesnt care to address how your diet and lifestyle affect cancer and your recovery.
Do you think the chemotherapy has something to do with her lungs improving?
Lisa:
I came across your blog as I was looking for information about hand foot syndrome to help my husband, who has metastatic stage IV esophageal cancer. Thank you for your insight and straightforward talk about facing stage IV cancer. I am stumbling along, trying to be a supportive spouse, while still managing the household and a full-time job, and dealing with my own feelings of grief and helplessness. I particularly liked your piece regarding what should be said to a cancer patient, rather than the “stupid” things you recounted in another post.
I am trying to navigate these waters while I cannot possibly understand what my husband is going through.
Your insight has been helpful. I hope your day is good.
Lisa,
Your strength amazes me – and your level-headedness. Your kids are so lucky to have a mom like you. What a great example you are.
‘Never give up!’
Bless your dear heart. Sending lots of *hugs* for you and your family.
Ruthie
Well done Lisa on getting through an horrific time. You’re a brave, inspirational soul. Keep fighting and know that people think of you often. Sending love and hugs from Ireland x
I’m thrilled to hear about a turning point for you. Sending lots of love and TLC,
Jody
Thinking of you….you are much braver than I am! My surgery is scheduled for end of Feb. I am hoping this will improve my quality of life. Thanks for getting me to even go to a doctor! Was surprised to find out I am in great health… except for this one “issue”. So I am hopeful. For me. For both of us.
Stay safe!
Sheila
My thoughts and prayers are with you, Lisa. Focus on the beauty of your flowers (great photography!) and the knowledge that they are only hiding under a bit of snow right now.
Lisa, We’ve never met, but I’ve followed your blog for quite some time now and really feel remiss in not letting you know how much your posts have meant to me. I’m a critical care nurse — not involved in taking care of people with cancer at all. But your honest sharing of what it’s like to go through everything that you’ve gone through and in taking the time to explain how you feel and how you cope with all of this has really hit home. I think that I see my patients a little differently because of everything that you’ve shared. Please know that you are often in my thoughts and always in my prayers. I know that it takes so much energy for you to share all of these posts, but please know that it is definitely worth it. I look forward to your next post ….. mainly because it means that you’re feeling well enough to write and that is always good news! I’ll keep in touch with you via comments on your blog, going forward.
Cathy Lubliner
Thank you for sharing.
As always, you are on my mind so your updates are both important and appreciated. My hope is that your strength is continuing to build so your day to day life is physically and mentally easier on you. Keep the beautiful flower pictures coming – they are wonderful as are you. Peace and virtual hugs to you. Dee Anne
Looking at the moon, thought of you and wanted you to know…lifting you in my prayers.
Lisa — I guess that I assume since you haven’t posted since January 17th that you’re having a difficult time. Please know that you and your family are truly in my thoughts and prayers. Thinking of you, and hoping that you’re feeling well enough to post an update — Cathy
very nice post i like the presentation of this article