It’s hard to believe how many days went by when I was in the hospital. It’s hard to believe how many days have gone by since I’ve been home.
I have wanted to write a blogpost so often. I sat down at the computer many times in the last few weeks to update you on what has been going on.
Most often what happened when I did that is simple: I got very tired and fell asleep. Sometimes my vertigo was really distracting. Sometimes the distraction was something wonderful: one of the kids wanted to tell me something. Frequently it was Tristan in his little voice saying, “I love you, Mama.” That one always takes priority, of course.
I’m on a lot of pain medication at the moment. I have been since leaving the hospital almost three weeks ago. The positive effects of radiation haven’t quite kicked in yet. I still have many of the negative effects of radiation. These will go away soon. But right now I’m still waiting. This is totally normal for radiation that is used in the way I used it, I should point out; it takes weeks, and in fact months, for the positive benefits of radiation to be fully realized. During that time the negative side effects of radiation can linger.
They radiated my spine in the T9/T10 areas from both the front and back and also radiated my pelvis through from the left and right sides for ten sessions over two weeks. The side effects that I have are related to the particular lines of radiation and what areas the beams hit while also hitting their targets. For me, esophagus, stomach, intestines, colon, pelvis, sacrum, and spine were the main areas hit. Esophagitis which makes eating and drinking painful is starting to decrease (but the raspy voice continues). Problems with digestion continue. Lowered blood counts continue. Pain and inflammation in nerves and tumor sites continue. Heartburn and colitis have decreased. I do not have radiation burns right now and they really didn’t get too bad over the course of those two weeks, just some sensitive pinkish/brownish areas.
The pain that was so debilitating is finally under control with pain patches. It takes quite a high dose to keep it managed right now but we will try decreasing this amount as the weeks go on. I will meet with the palliative care team in a few weeks to talk through a strategy for the reduction. The team is always available by phone for any fine tuning or questions that I have until that time.
Again I’d like to remind readers that palliative care is not synonymous with end-of-life care. Palliative care is for pain management and side effect management at any point of treatment for cancer or other diseases. If you have pain or other problems that are bothering you or a loved one, I encourage you to talk to the specialists in palliative care. They will be able to help.
Patients and their families often wait too long to consult with these specialists because they think talking to them implies something about death. It does not. In fact, if you wait too long (until the very end of life) the palliative team will probably be less likely to fully help you or your loved one because they won’t know how the patient responds to different medications, what their side effects are, what doses they respond to, etc. Palliative care doctors can help better if they know the patient and their particular side effect profile. I implore you to use them sooner rather than later. Time and again, studies have shown that healing occurs better when patients are not in pain.
We aren’t quite sure where it’s coming from, but my vertigo is quite the problem right now. We know it is from one of my medications, presumably the pain one. Of course for now I still need to make my pain medication the priority. As I said earlier, as soon as I can, I’ll be decreasing that dose. We know from a scan a few weeks ago that I do not have any metastases in my brain causing the vertigo. Of course that was a natural concern and it’s nice to have that possibility off the list. I still can’t drive because of the vertigo. So I’ve been housebound for the three weeks I’ve been home. Before that I was in the hospital for almost three weeks. I don’t have cabin fever too much because of the bad weather we have been having. But I’m probably getting close.
I’m still trying to figure things out. I’m still adjusting to the new information about the tumors and the progression that’s been happening in my body over the last few months. I’m learning about the genomic mutations that are present in the metastases and what they mean for future chemotherapy and clinical trial choices. I did not start the clinical trial I was planning to, obviously. Instead, we needed to do more aggressive and surefire treatments rather than investigational. Therefore, I did the radiation and then started chemotherapy 5 days after the completion of radiation (a bit of a fast track but I felt up for it and my bloodwork and exams indicated to my oncologist that I was ready).
I started chemotherapy two and a half weeks ago. I’ve had three infusions so far of Taxol. This is an intravenous chemotherapy that works on rapidly dividing cells of all kinds. One ramification of that action is that it will make my hair, eyebrows, and lashes come out in the next few weeks. I received it in a different regimen six years ago as many people do with early stage breast cancer following the use of Adriamycin and Cytoxan on a dose-dense schedule (every 2 weeks). It’s a popular drug.
The way it’s used now in the metastatic setting is different in terms of dose and frequency of infusions. In the metastatic setting there are different doses that are used. I’m using the highest right now. It is done in a “three weeks on, one week off” schedule. That means I get it once a week for three weeks and then I get a one week break. Though I never had a bad reaction to it in 2007, I did have a reaction to the drug the first time I got it a few weeks ago. I won’t go into the details of it here. I’ll just say that with increased amounts of steroids as pre-meds I’ve done just fine with the Taxol since that first episode.
For now I’ll close by saying I’m grateful for the friends that have been lending a hand with rides and playdates and meals while I’ve been housebound and unable to drive. I’m thankful for all of my readers who have been checking in on me and waiting patiently for this update. I am so happy to see so many new blog readers and Twitter followers in the past few weeks!
I want to give special recognition to all of the doctors, nurses, aides, therapists, and everyone else I came in contact with at Sloan-Kettering while I was hospitalized. Yes, there are always ways to improve, but I can truly say that I felt fortunate to be in such a caring environment for those weeks. I never doubted that it was the right place and that everyone there had my health and overall well-being first and foremost in their minds. It was always a team effort and for those of you who helped me in every way, I thank you. The fact that I miss so many of the you who cared for me shows that you made an impression on me.
The blogposts will return to a mix of updates, practical advice, and poetry as the weeks go on and I feel more and more like myself. Most posts will be shorter than this one but I know most of you have been wondering how I am and what I’ve been up to. I think this brings you up to date.
*Please note that I do not need suggestions for my side effects. I haven’t gone into the details here of what I’m taking, but I do have what I need from my team. Thank you!
Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.
Link to Twitter
Thank you for the update!
So glad you are home. Wishing you rapid recovery from the vertigo and the worst radiation side effects. xoxo
Thinking of you often & wishing you sweet wishes.
So true about palliative care – unfortunately, there is such a negative connotation to it. Nice to see a post, thinking of you.
Thanks for the update, Lisa. I hope the good stuff from the radiation kicks in soon and the not-so-good fades ahead of schedule. Much to ask for; but for you, I hope it comes.
Most of all I’m glad you’re home, and have friends to help you. Think of you very often. Wish I was close enough to, I don’t know, walk Lucy or take the kids bowling or clean the gutters or *something*.
Many kisses and even more good wishes,
David
Thank you Lisa for reaching out to all of your cyber friends. I don’t know if this information will help you or not but motion sickness medications have helped many people on pain meds. Apparently pain meds stimulate the part of your brain that causes vertigo and motion sickness meds calm that part down. I’m not giving medical advice or telling you what to do. I’m sure your doctors are on top of all of your issues but I wanted to let you know what works for some. Easy and even over the counter Bonine. Best wishes for relief soon so you can get back on the road! By the way that’s a beautiful Winter photo on this blogspot. Hugs from Florida xxxx
nice to see you slowing returning to the world. i miss your tweets, your posts and your red sweater in my feed. xo
Thank you so much for this update. With your life being turned upside-down these last six weeks, I’m sure I speak for other readers (something I would never normally do) when I say how appreciative we are that you have caught us up. Hoping the pain, vertigo, and tummy distress begin to fade more and more each day. Love you, Lisa. xo
I am so pleased to hear that you are home with your family Lisa. I have thought about you and just had a feeling I would soon read a blogpost from you. Sending you love and hugs from Oregon.
Lisa,
Thank you for the update. I wish you healing. Thank you, too, for the last paragraph. How much better would the world be if we all approached the day with that thought in mind, and then lived it as the day progressed?
Thanks for the update Lisa. You are always on my mind, sending hugs.
Glad you are home! Hope you are feeling better soon.
This is so helpful to me as I am only months or a couple of years behind you. No one wants to tell me what happens so this is so informative and makes it less scary. I have breast mets to bone and my first diagnosis was in 2005. I am on affinitor and aromasin for right now and have side effects of course. Best thoughts of hope and courage as we go forward, Lisa.
Prayers and warm hugs to you, Colleen.
I’m a new reader. How brave you are. I’m in awe–and thinking of you often. Sending you all good thoughts in your journey.
So glad to hear from you.Be strong and the journey is long to recovery,but u will get there.Everyone,is praying for you.
I started following you not long ago and am so grateful for every bit of info you tweet, post, and blog:) thank you…so glad you’re home with the kiddies, and praying for you each and every day. All you’ve mentioned helps me to keep my family together due to my mom’s bc mets dx…xoxo you are a beautiful, strong, and admirable person 🙂
Thank you for the blog post, Lisa. I’m new to you and your blog and am sorry that I missed so much of your journey. You are inspiring and so, so, strong. I wish you all the best going forward and can’t wait to see the words “no cancer” in a future blog.
So happy you are home and feeling a bit better. Sending you prayers and positive thoughts for further healing.
Lisa,
I am thinking of you and I am deeply grateful for the the sense of warmth and healing you send in the midst of your own pain in this dark and cold season. Your advice about seeking palliative care sooner rather than later is much needed. Your ability to balance the external/medical path with your internal, personal journey is a profound gift. Thank you.
Always wonderful to hear from you. Positivity and love to you!!!
I am a new reader – you are an amazing person – I hope I can be as strong as you thru my journey as I have decimated breast cancer – given 2 1/2 years to live a year ago. You give me inspiration. All the hugs in the world. Luv you!
Lisa,
I have read your blogs over the course of the last year as I am just under 2 years from my breast cancer diagnosis, and I have only recently responded to a few. I completely get the idea of “finding a bit of beauty each day” and I wish you many, many more days of beauty. Thank you for all the information you provide so many of us with. It is very much needed and appreciated. I hope you continue to feel more like your self as the days go by and you are able to enjoy “time….lots of it” with your family.
I will admit to being particularly worried about you in the absence of an update. I try to ascribe to “no news is good news” but you have been in my hourly thoughts over the last few days in particular.
Yes, this post shares the nuts and bolts of what you have been/are going through and I am glad to read that you have real support in the ways that you need it.
And, yes, those I love yous from your children should stop the world.
Sending healing and strengthening thoughts up and out.
Thank you so much for this update, Lisa. You have been on my mind a lot, and it is good to hear from you. I’m hoping the side effects get better soon, particularly the vertigo, so you can be free in the world again. Love to you, Erika
Thx for sharing your journey. I appreciate how you capture life with cancer without being morbid or being pollyanneish.
Hugs and a little plate of Corgi cookies. I hope you feel better soon.
Lisa, Thank you for your willingness to share with us…our hope is that the negative side effects from your treatments will soon lessen and you will be able to carry on with less effort and more comfort..for you, your family and we who think about you and wish you well daily. So many of us have come together at a place of caring and understanding that would not have happened without your information….that is a powerful place and I and so many others want it to continue.
Thank you so much.
How encouraging to see an update, Lisa! Since all of us have (or will have) pain, suffering, and tragedy to some degree, I especially like your suggestion to find some beauty in life. During my times, as described above, I have found solace in music and in Buddhist philosophy. Although I am not a Buddhist, I have found that reading the work of my favorite Buddhist monk, and incorporating it into the skills that I have developed through counseling and through living life, helps me to focus on taking care of my emotional needs and caring about others. Combining those lessons with my love of music, I have found ways of getting through adversity. I have to add that there are only certain musical pieces that “speak to me”. I find them to be blessings. I wish you the same blessings.
Lisa, I just started reading your posts recently. Thank you for sharing your life so openly and honestly with us. I’ve always believed that in life there are certain people who will cross our paths and leave an indelible mark on us. You have done that for me. I have never met you but I feel your presence and my life has been enriched from knowing you as I do. I wish that I could wrap my arms around you and thank you. For your elegance, your grace and your quote that I look at daily! You are love, Lisa, and I love you with my whole heart!
You really have a gift with words and are such an inspiration to me. I started following your blog last year after I lost my mother to uterine cancer at age 65. You provide comfort to so many people and have touched so many lives with your words. I can sit in silence no more!….You must know I am sending warm healing sunshiney thoughts and prayers your way 🙂
Thanks for the update, Lisa. So glad you’re home– sending you lots of good thoughts!
“healing occurs better when patients are not in pain”… words by which to live. Neither in medical school nor in residence did I get that valuable evidence-based lesson. It was as a patient in a trauma unit after life-threatening injuries as a pedestrian struck by a speeding car that I finally learned it. The bad habit of our culture (stiff upper lip, man up, work through the pain, no pain no gain…) becomes an insidious barrier to healing. What good advice you give, Lisa!
Thank you for updating us! Glad to hear you are home. Hope you start feeling relief soon. <3
I have learned so much from you!! Let’s see….
1) Listen and then ASK! Particularly this one: “Is there anything you’d like me to do?” –or– “Do you want my advice, or do you just want to vent?”
2) Don’t presume to know anything about a cancer sufferer’s experience
3) The handful of suggestions you made to me regarding my own cancer — some of which honestly may end up to have been life-saving (no hyperbole)…or, at the very minimum, were breast-saving
4) And now — seek out palliative care sooner rather than later. That one is such a golden nugget! I will put that in my back pocket for (hopefully much) later use.
Thank you, Lisa, for being in my life.
Thanks Lisa for writing such a beautiful and important update. I only recently started reading your posts and have been thinking of you daily, wanting to catch up. You present the metastatic journey that I too am on and you talk realistically. You share what we all want to hear, to know as we walk along with our friends. The advice on pain meds and early beginning is important for all of us. I meet so many on my path and researching and conference attending and patient advocate grant reviewing who need just what you write about, especially in the living that you so wonderfully are doing. I will continue to find that beauty outside home and inside with family who are absolutely going through so much too. Feel better each day!
Love how you ended the blog/post…..simple but powerful statement.
So glad to hear from you again and to get an update. I know how tough and frustrating it is to be housebound and unable to follow your usual routine.
I am reading “The Emperor of All Maladies” (I have been unable to face it before now) and a doctor in England used the term “palliative medicine” which really is more descriptive of what this is.
I am glad to hear that palliative medicine is helping you deal with everything.
The almost-three months that I spent in the hospital (cancer unit) last year are a distant blur. There is so much I do not remember. But I do remember how wonderful the staff was. Well, except for my gyn-onc, whom I fired in a rare moment of clarity.
You and your family are in my thoughts all the time.
Hugs,
JoAnn
So grateful to have a post from you; i now think/understand palliative care differently. Lisa it is so difficult to try to write a coherent reply to your posts-i’m amazed at the firepower behind the one creating them. Thank you if that is even appropriate. xo
Lisa, I started following you about a year ago when I found out that I had cancer ( http://paulblais.blogspot.com/p/my-cancer-storyso-far.html ). I think the first post I read was “Expiration Date” ( http://lisabadams.com/2013/04/28/expiration-date/ ), which was powerful post. My life is unsure right now and I have a nagging feeling that this may just be my last year. That’s not to say I’ve given up, but it is the constant drip in my thoughts.
Having said that, your courage to fight on has played a part in planning like there a long life a head. I have started new business ventures with a hope to inspire others to say “I can do it.” ( http://www.DoubtTheDoubts.com )
I just wanted to say thank you. Lots of love from a stranger.
Thanks for the update. It is so good to hear how you are doing. It encourages me so when I get there I won’t think I’m the only one. I will know what to expect.
Your in my prayers.
Gina
Lisa – Echoing others, thank you for your update. Hoping each day is better then the day before and the good parts of your treatment kick in very soon.
Have been anxious about you. It’s good to hear your voice again.
Leah
As always, you send information with perspectives from the head, the heart and the soul. Continue to be strong. Whenever we get a posting it’ a gift from the heart and we treasure it.
I am grateful for your update today — though we’ve never met, you are in my thoughts.
Along with all you share, your last words are very powerful — “Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”
I shall carry these words with me throughout my day. Thank you.
Palliative care is so misunderstood. You define it well. I will borrow your words this week in my work with patients struggling with choices. Hope that’s ok
Absolutely. I feel so strongly about this. Happy if my words can help.
Hi Lisa,
I’m glad you had such a good experience with MSKCC’s Palliative Care team while you were an inpatient and after you went home. Unfortunately, while I’m a huge believer in palliative care, for us outpatients accessing such care is very difficult. My story would almost be funny if it were not so outrageous. Unfortunately, I understand from speaking to other women undergoing radiation that it is far from unique. I’m currently getting radiation to address recurrent breast cancer that has spread. While I have nothing but good things to say about my MSKCC surgeon and medical oncologist, the breast radiation oncology team is what my grandmother used to call “punk” about pain management. For me the radiation side effects cause shoulder pain that is an 8/10 and reduce me to weeping in pain. Despite repeated requests over a three week period that my radiation oncologist involve Palliative Care, she has refused. The best she had to offer was advil (which I cannot take because of other medications) and a heating pad. As you know, that isn’t going to get it done when the pain is an 8/10!! It got to the point where one of the radiation therapists got so upset seeing me sobbing through treatment day after day that she slipped me the phone number of MSKCC’s patient advocate to see if they could get some movement. Unfortunately, without the “buy-in” of your attending, Palliative Care won’t see you (I tried to call them directly and was told I had to go through my attending). Last Friday after treatment, I finally could not take it anymore. I sat weeping in my attending’s waiting room and refused to leave until Palliative Care was called for an immediate consult. When the secretary paged them to come down Palliative Care told her that they could not see me for three weeks (the “first available”). I asked her to tell them it was an emergency, figuring that an 8/10 counted as an emergency. They said I’d have to make an appointment to see a nurse to verify that this was in fact an emergency. She told me she’d have to check the schedule to see when I could see a nurse. I asked why my attending couldn’t attest it was an emergency. (Why my attending wasn’t on the phone herself to one of her colleagues while her patient was doubled over sobbing in pain is a whole different question.)
Finally, a resident passed through the waiting room and saw me sobbing. He called a friend in palliative care and was able to create a pain plan for me that will provide some improvement even if it doesn’t really address the issue. Palliative Care never showed up (neither did the radiation attending even though her secretary said she was down the hall that day).
Other hospitals have an emergency response team that doctors, nurses and even patients can call when they believe there is a significant problem ordinary clinical channels are not properly addressing. At a minimum, this is something that MSKCC should consider. It is also clear that they need to do significant education with their staff about how and when to involve Palliative Care. It is inexcusable that patients try to get Palliative Care appropriately involved and are blocked by their treatment team.
In the meantime, I’m sorry you’re suffering from esophagitis and taxol side effects. I’ve had both and they really are no fun!
Thank you for the update on your progress. Your posts are written with such love and clarity and from a perspective that helps educate and support others that may be going through similar health issues. I admire your strength. Thank you for sharing! For me, the neuropathy lingered for some time after radiation and chemo (maybe up to 3 years after, but decreased significantly over time). xoxo Darla
Lisa I am so happy you are home and I know you have a lot on your plate right now. I hope that radiation helps with the pain over time. I am sure that the taxol with the radiation is adding to the fatigue and although it’s expected I am sure it’s a lot at once. Thank you for keeping us in the loop. I am sending you positive thoughts and wishing you quality time with your family and friends. With love and light – Susan
Thank you x
Lisa,
Glad to read your update. Sending hugs and positive thoughts your way!
So glad the Lord gave you the strength to up date us on how you are doing. I was praying for you over the weekend from Oklahoma because you have not posted anything.
Blessings keep coming your way. Keep cherishing each and every moment. God Bless You!
Thanks for the update. Glad the pain is under control. Hopefully things will get better and better.
Thank you for the update! You have been in my thoughts often over the last weeks. Sending warmth and good thoughts to you.
Hoping and praying for u to be free of pain dear lisa. Thank you for this update.
So inspirational you are! I only found out a month ago that I have breast cancer stage 2 with no lymph node involvement. I am very depressed following my first chemo treatment last Thursday. But after reading your posts it makes me realize that I need to suck it up, my prayers are with you!
Good to read an update. I have never met you, but you often cross my mind and I send warm thoughts your way. 🙂 The last line of your post is now a quote I have over my computer. Great thoughts.
Yes, we all must persevere. So glad to get your update. You are being loved by so many, and we are all glad you can feel that love. My side effects have prevented me from commenting as much as I’d like. I won’t go into them, either. XOX
I’m a little late (as I seem to be with all my blog readings lately). I do hope you are getting some relief by now with the vertigo & pain! And so glad you pointed out again the difference between palliative & end-of-life care. They are different, and so many people don’t understand. Thank you.
Once again, your update and post in the midst of all that you are enduring was full of education, information and your heart. I am so glad that you are home and among your family and the sounds of your children’s voices. In the meantime, I am sending you much love and many gentle hugs! xo ~Dee Anne
Wow. I am always amazed when I read your posts. I am amazed at your strength. Thank you so much for sharing.
This post was posted almost a week ago. I hope you are doing ok.
I hope you will have the opportunity to celebrate LOVE (more than you normally do) on Friday! Cheers!
You are an amazing person. After going through all the above, you are so caring for your readers who are waiting for your posts..Amazing.
Your generosity in chronicling the stages of Cancer and the treatment , is so helpful to many around the world who can courageously face the situation. Hats off to you.
I’m so very sorry, Lisa, to read of the sickening challenges you’re endure in living with metastatic breast cancer. It sucks. Thank you for your willingness to share your experience with so many others–to inform, educate, inspire, and challenge when necessary.
I too am living with metastatic breast cancer. My story is chronicled in a book called “Hoping for More” (http://hopingformore.com/) and I blog about my experience as well at: http://hopingformoreblog.blogspot.com/
Your posts communicate well your insight, intelligence, grace, wit, courage. I’m also good friends with the creeping despair that lingers behind the title of this most recent post. Hoping that this day devoted to love is a day of more light and less dark. And that tomorrow brings even a bit more.
My dear wife and I are on the cancer path again–who knew there are so many kinds. I am so sorry for you and your family. Just discovered your blog. The list of dumb things people say resonated. If one more person tells me to pray harder, or put out more positjve energy I may . . .continue to ignore them. There so many kind people and then there the ones who seem to think it’s contagious. So many seek some ultimate meaning. Luck of the draw–at least that’s what I think. People are starting to fall away here. Mortality is scary. And as process has continued, have out what true friendship is. Sending to u and yours a greeting our youngest daughter has always used for us–hugs, kisses,waving–from California. Tim
Many mornings when I wake up, you are one of my first thoughts of the day. I wonder how you are, in what kind of mood you’ve awoken, how you are feeling, and what plans you have in store as a result. And, so it was on this Sunday morning. I’ve been thinking of you all day so I took that as a sign that I should pop over to let you know that I am hoping today is a good day spent just as you would like it.
So glad to hear from you again… I’ve been concerned. Lisa was on a lot of pain meds and sure helped all aspects of her healing.
Keep searching for beauty… It’s out there. Aunt Connie
Hope you’re hanging in there and feeling better. Sending good thoughts. Xo