My most recent round of chemo almost three weeks ago fell on my 45th birthday. I didn’t reschedule the appointment; I got up at 5 A.M. as planned and spent the day going to Sloan-Kettering getting my 7th Carboplatin and 14th Gemzar infusions. It seemed a fitting way to spend the day, doing what I can to see as many more birthdays as possible.
Thank you to those who donated to my fund for research on metastatic breast cancer at Sloan-Kettering in honor of my birthday, I so greatly appreciate it.
My blood counts finally are having trouble rebounding between the constant hits. The blood draw that they do to check my counts before chemo showed that my white count and ANC were the lowest we’ve seen this year (this means the patient is dangerously susceptible to infection). Chemo is sometimes postponed under these conditions but we opted to proceed. Twenty-four hours after chemo I received a shot of Neulasta to spur my bone marrow to make more white cells.
This type of injection often causes intense bone pain for days afterward. A three day regimen of over-the-counter Claritin (night before injection, night of injection, and one more the night after) seems to help many people with this pain. I did the Claritin and did well after (though I tolerated them well when I had them 7 years ago). If you suffer from terrible bone pain after Neulasta shots it might be something to ask your oncologist about. I learned about it from the nurses on my team.
My red blood cell count also took a hit the following week after chemo. I needed to get another blood transfusion. I’ll need Neulasta and blood transfusions more frequently now as the cumulative toll of this chemotherapy is taking effect. Muscle pain increased significantly this cycle as well. For days I was unable to bend over to even pick something off the floor. I couldn’t walk more than a few steps or leave the house. I’ll be meeting with my palliative care doctor on Tuesday to try to get some ideas on the best things to do for this new development. I’ll take this opportunity to remind you that palliative care does not equal hospice care. It is NOT for end of life care only. Palliative care is supportive care. The specialists help with all side effects at any stage of diagnosis/treatment.
Every day brings something new. It’s definitely getting more challenging in some of these ways but the good days are so grand to have.
School is going to start in another week and on the good days I am busy taking the kids to buy all of the things they need to start the year. It’s nice to be able to do some of these traditional August things with them. I treasure the most mundane activities of buying a new baseball glove, picking up school supplies, getting the back-to-school haircuts.
On Tuesday I will be back again for cycle 8 of Carbo/Gemzar; there won’t be a family summer trip. It’s been tough to see all of the photos online of everyone’s trips and summer fun and adventures. Cancer is a thief, stealing the carefree week my family and I should have had.
I always think these medical updates must be rather boring to read, I confess I hesitate to write them. I will probably start sharing more frequent quick updates on my blog Facebook page for those who are interested.
I’ll leave you with a few photos that make me smile. One is a new one with my beloved medical oncologist, Dr. Chau Dang (on my birthday). I couldn’t do this without her leading the team that treats me. The next one is part of my front garden in bloom last week. One is of our corgi, Lucy, who keeps me company on these housebound days.
And something I wrote a while ago that I read almost every morning:
Make the most of this day. Whatever that means to you, whatever you can do. No matter how small it seems to you. Don’t waste it.
I hope you all have a good week and I hope to have a post about resilience coming soon…
Link to Twitter
We love you Lisa.
Thank you.
Lisa, your honesty and the sparkle in your eyes continue. You have such support as you go through your clinical trials. I hope you know how much you are loved by those of us who read your updates. Sending hugs from Oregon to you my friend!!
Just to clarify in case it has been confusing, the chemo I am on now is not a clinical trial, these two drugs are standard chemotherapies used with many types of cancer. The only trial I have done so far is the GDC-0032 trial that I wrote about last winter. I appreciate the support!
Lisa- Thank you for being so unselfish. My thoughts are with you and your family always.
Your medical updates are never boring Lisa. They are informative and supplemental to your Facebook and Twitter posts. Please don’t stop doing them! Love the photos too! Lucy is the light in the dark. Her smile is contagious! I’m thrilled that you are doing even the most mundane, normal things like getting the kids ready for school. I know it means a lot to you and for that, we are all grateful you are able to carry on. I will await your next post with hope, and love. Hugs from Florida. Tami
Thanks for clarifying what palliative care is. My heart just about sank when the oncologist told us my husband would be receiving palliative care. That was 10 months ago and he’s still here. PC is a wonderful thing and I’m glad it’s helping you and I’m glad that you’re able to do the normal things(on your food days) so many take for granted.
Lots of hugs.
Sue
xxx
I know so many patients and their families bristle and/or get terrified when a palliative care consult is recommended… they think it means “the end.” It doesn’t! Even if you have stage 1 cancer palliative care doctors can help with whatever problems you are having (pain, nausea, neuropathy, etc.). It is also beneficial because then you have an ongoing relationship with someone if things do get worse. It makes it far easier to get help if you’ve been seeing someone already and can contact them.
Hoping the hardest days are over & you improve quickly. Sounds like you have a great team doing all the right things. I know you have a world wide support group cheering for you and looking forward to you feeling better.
& oh Lucy! What a smile! Glad to hear she is keeping you company.
Missing your lovely self at The NY Show. You have a beautiful garden and I am so glad you have your corgi for snuggles.
I am another who does not find your updates boring – far from it! Understand if Facebook is easier, just please tweet that you’ve posted an update on FB. Thanks, Lisa
All of the posts from that FB page get tweeted so you won’t miss anything… and Twitter is definitely the place that gets the most day to day info on how I’m doing. Thanks so much!
Dear Lisa,
Thanks for the update. So glad you have Lucy-she looks like a real sweetheart.
Best Wishes,
Barbara
I hope you continue to post. I don’t think anyone that comes to this sight finds it boring.
God bless you sweet lady. I always love hearing from you, and I am trying to understand what you’re going through even though I know I can’t even imagine. I know who does though…
Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
I love hearing from you .
I won’t waste it, thanks to you.
This is also a good reminder to donate blood again. Been dragging my heels for too long.
I’m not on FB, and I appreciate your updates, even if I rarely comment. I hope there are more good days than bad ones in the busy week to come. And I love the pics!
I love all three pics you posted. Your flower garden looks idyllic. You have learned what the rest of us need to discover – the little things in life are really the big things. I continue to pray for you and your family, Lisa.
Thank you for the update. I just finished 6 rounds of carbo/taxol and my dogs were very comforting to me. Lucy looks like a little luv.
Due to my leukemia, I’ve got way too many white cells. I’d be most happy to give you as many as you need. If only it were that easy….
I’m very happy for you that you have good days along with the not-so-good. I do think of you every day, and especially when I have my onco appointments.
Read every word. Thinking of you. Keep up the fight. You look beautiful as Jonas would say!
Love you and your family,
Lynn
Lisa, I do not find the medical updates boring. I think they offer valuable insight into a part of a world we rarely see. I love hearing about your care team. The palliative care doctor is such an awesome idea, and one that I knew nothing about prior to reading your blog. I feel like you are leading the way and showing all of us how to fight this crappy disease. Whether we end up having to fight it or our loved ones have to fight it, I feel like you are helping us all know how to do “this” better. I always appreciate your candor. Sending love and prayers.
Lisa, you are not alone in this. Happy B-day! Wanted to share my poem with you:
Hold on there
Do not let the dark wave overpower you
Take a ride with it
Give in without giving up
Let yourself heal
Shout out your pain
Dig it deep into the ground
And the flower will grow
Pour it on paper
It may turn into a poem
For the last year and half steroids has given me the “quality” that was missing in being able to spend time with my family, and It also had the added bonus of slowing down my cancer. I do hope that your Palliative team can find a solution for you to get more energy and more importantly to be able to move about more freely. Wishing you many more good days in the future.
I found your blog when I was diagnosed earlier this year, and found your intelligence, wit, and open hearted honesty, a joy to read. I read your Leroy post back then too. You gave me guidance on how to navigate things and people. I too am fortunate to be treated at MSK.
Please keep doing what you do (no pressure LOL)
we – I – won’t get tired of your posts. All of them. I send you a thousand “thank you’s” and cyber hugs.
“I treasure the most mundane activities of buying a new baseball glove, picking up school supplies, getting the back-to-school haircuts.”
That’s because they’re not mundane. They’re everything.
My dogs are actually getting mildewy around their collars this summer since we’ve been stuck in town. Not kidding. But beyond thanking you for your beautiful writing, your comments on palliative care are so important because most cancer patients here in the hinterlands don’t have a palliative team. For many rural Maine people, very little information is provided to the patient about the possibilities of a palliative regimen, as opposed to a generic dosage of pain meds. Mainers are tough cookies who don’t complain, so I’m not sure that doctors even understand that they may need better palliative plans because everyone here is so effing stoic. Your account of your experience is an invaluable resource that will improve the lives of many people who aren’t aware of their options.
Hi Lisa,
Like so many others, I truly appreciate your medical updates. It is a great benefit to know how stage 4 is treated. It is a scary notion to hear your doctor say that you will be on chemo for the rest of your life. You wonder how you can do this, and you are showing us how it is possible. And with grace and dignity. Even when you are at your worst, it is possible to kick it back down and have those good days. I can’t even imagine how you felt when you were not able to do much, but you persevered and did not give up! I have been very lucky to be on Xeloda for 21 months now and it is doing it’s job. Yes, there are side effects, but they are tolerable. I know that one day the cancer will find it’s way around the Xeloda, but when that day comes, I will look it in the eye and say “not yet!” and go on to the next round of meds. I will have that attitude because of you.
Hi Lisa,
Thank you, thank you, thank you for posting. My stepfather is going through almost the exact same issues with his chemo treatment. Your post has given me an additional perspective and has helped me see how I can be a better advocate for him. Wishing you and your family only the best – Angie
Thank you, I am enjoying the end of summer rituals too! I am grateful for this day. I am thinking of you often.
Hello Lisa,
I check in on you most every day. I am beginning my 3rd week of radiation on my left breast (one 2cm tumor and a separate DCIS) after returning from Seattle (Swedish Institute) where I had a lumpectomy on my right breast (Atypia). We must find humor and one doc did. He referred to the Atypia as “Funny business!” I was shocked when he said this, but have laughed multiple times since. Believe me, I have not been pinkwashed!
For me, learning as much about my cancer (ER 94% PR 74%), the chemotherapy drugs (cyclophosphamide & Docetaxel), has helped me emotionally and mentally to understand how cancer cells progress and evolve/change and progress.
I want you to know, you are so beautiful inside and out. Thank you for intelligently sharing your personal life, treatments and the procedures you face with bravery and such a bright and shining spirit.
Keeping an eye on you from across the country! With sisterly love, Deborah
Hello Lisa,
I check in on you most every day. I am beginning my 3rd week of radiation on my left breast (one 2cm tumor and a separate DCIS) after returning from Seattle (Swedish Institute) where I had a lumpectomy on my right breast (Atypia). We must find humor and one doc did. He referred to the Atypia as “Funny business!” I was shocked when he said this, but have laughed multiple times since. Believe me, I have not been pinkwashed!
For me, learning as much about my cancer (ER 94% PR 74%), the chemotherapy drugs (cyclophosphamide & Docetaxel), has helped me emotionally and mentally to understand how cancer cells progress, evolve/change and progress.
I want you to know, you are so beautiful inside and out. Thank you for intelligently sharing your personal life, treatments and the procedures you face with bravery and such a bright and shining spirit.
Keeping an eye on you from across the country! With sisterly love, Deborah
Just sending you lots and lots of love from across the water in England……………keep the faith Lisa, we’re all behind you xxxxxxxxxxx,
Thabks Lisa,
I love your posts and the reminder to appreciate life
I send healing your way all the time:)
Lots of love
Wow, love to hear about you having good times and good days. Many more to you.
Keep going love. My wife has Mbc, your posts are so special to me as I feel I’m not on my own. My thoughts are with you. Chris
Thanks for the update. Hope things get better for you.
Your blog is inspirational, and very helpful!! i’m also stage 4, I’m TNBC, and on Gemzar and Carboplatin.