Very Belated Oncology Report
It feels pretty crummy to start another blog post by apologizing for not writing sooner. I am so grateful to all of you, a huge circle of friends, who are cheering me on and committed to my recovery. You are invested in my health and you deserve to know the latest news. That is the whole point of the blog! So please know that if I go quiet it's not because I don't want to share but the news is hard to comes to terms with. When I write it down and publish it to the world it get too real and too painful. It takes me some time to process what this all means for my life. So thanks for being patient. (The other reason I was late posting was Nan was visiting for several days. I will post more about her visit soon)
We had our meeting with Dr. Angelelli (I seem to have an all Italian cancer fighting team) on Monday April 4th. She began our meeting by explaining the pair of drugs I will be receiving during chemotherapy. It is a very standard combination of carboplatin and paclitaxel. I will receive the drugs separately, via a IV drip for 3-4 hours each, making for one very long day. This treatment will happen every 3 weeks for 6 treatment cycles. Dr. A then went over the myriad and bewildering array of side effects -- tingling in my hands and toes, mouth sores, constipation or diarrhea, or both! -- but since every patient reacts so differently, I decided to just go with it as it happens.
The only thing I have planned for is hair loss. I went to a workshop at Maggies, the cancer support center at Churchill Hospital. I learned that when your nose hairs fall out you have a chronic nasal drip! I'm gonna need more tissues. I also learned that I will still need to wash my bald head, and that baby shampoo is best. I tried on wigs, soft beanies, and tied scarves on my head with very limited success. On one level, I could care less about my hair falling out: don't I have I have bigger things to worry about? But I can also see the advantage of having a wig so I can go out "incognito." Being bald, especially without eyebrows! just screams "cancer patient" and even if that only brings kind and sympathetic attention, it still keeps the issue bubbled up. Most days I want to live a life and forget about cancer. I think being bald in public will make that harder. We shall see.
Next, Dr. A explained about the stage three drug trial I was eligible for. In addition to the standard course of treatment I could receive Velibarib (or a placebo) for an additional 30 cycles after the standard treatment ended. If we were staying in Oxford, with Churchill just a quick 10 minute cab ride away, I would have said yes. Since we are headed back to California in the fall Dr. A researched where the trial was offered; the closest was at UCLA. It was a hard decision but all that driving, several trips a month on work days, just seemed like too much. It may be insane to turn down a chance to have a drug that could save my life; I hope it's not a decision I will regret.
By far the hardest part of the meeting was learning that ovarian cancer at stage 3C can't be "cured." Even though surgery was very successful and chemo will kill many of the remaining cells, it can't get them all. Dr. A said their is a very good chance the cancer will come back. I am hoping to be in the small minority that ends my first chemo cancer free, but if I am not, what I can hope for is a long remission time, which means the next round of chemo is typically more effective. Eventually cancer becomes resistant to the drugs. This really changed the way I think about my situation: I have a chronic condition that needs to be managed and will be with me for the rest of my life. I will have CT scans and blood work every 3 months for several years. If I make it to 5 years and am cancer free, then the chance of recurrence goes way down. And we throw a HUGE PARTY! you are all invited.
As this was all sinking in I have been focused on statistics and trying to figure out my long-term prognosis. Young women (under age 45) have a much much higher 5 and 10 year survival rate. But women with stage 3C serious carcinoma have a much much lower survival rate. I am in both those groups, so where do I fit? I don't really know and I am just one data point, so there is no way to know. About the only thing that makes me feel better is that anyone could get hit by that proverbial bus tomorrow (let me tell you, those double decker buses whipping around the corners of High Street in Oxford could kill you!) This morbid thought somehow brings me peace. No one knows what tomorrow brings. I have a card by my bed that says, "I am not dying today. I am not dying tomorrow." And I know both of those statements are true. And that helps.
On a more practical note, I have updated my PostHope calendar with my tentative chemo dates. My first is Monday April 18th, in 3 days. I have also added the weeks I will be most tired and vulnerable to infection. And to continue to celebrate the small milestones: yesterday was 6 weeks post op. To think how far I have come -- I can lift more than a tea cup! open doors, walk 5 miles a day, and am off all my narcotic pain meds. Only my diaphragm is still giving me trouble, because they had to cut a hole and then patch it back up so it is still really tight most days. Diaphragms don't like being messed with!
Thanks again for all the love; it was the only thing that got me through these past 2 months. More soon from my chemo chair,
Michelle
Comments (12)
No need for apologies; you have to cope however you think best! I'm sure that all of us care just as much, regardless of whether you're silent or a constant stream of news! I have a friend who's getting chemo now for a breast cancer; she wears Hallowe'en costumes to every infusion session and posts the pics on Facebook. Just sayin. Gordon
Thank you so much for the update. I have been thinking about you every day. I am so glad you have a good plan of attack and that that will start soon. You are very strong and resilient. Keep up with those positive thoughts and one step and one day at a time. Sending big hugs from California! I can't wait to see you and give you a big hug in September.
One step, one cup of tea, one breath . . .we are holding a strong circle of caring for you, Cherie
It takes a lot of inner strength to open up and share your very personal journey as you have been doing. Staying strong and focused emotionally and participating in your various treatment with grace (and humor!) focuses this strength and we are all very proud of you.
Michelle, I am so proud of you and how bravely you move through your life. You are correct, we never know how this plays out and we must grab every moment of this gift and enjoy it and those around us as much as possible. Love, Shannon
Thank you for sharing this with us. Keep taking one day at a time. Our love to you both. xx Carolyn and John
We have to believe the chemo in a healthy young woman will be a positive experience overall. Keep the faith and hope for the best. We look forward to being with you at the end of the month. Love you. Jim
We are sending good California vibrations your way. We are honored that you entrust your experiences and feelings to us, your global community. As difficult as it is to write about your experience, there is power in sharing and letting us carry you in our hearts and heal you with our love. You have an outstanding medical team. While they are healing you, they and you are teaching us, too. This journey continually reinforces our admiration of your strength and reawakens our deep appreciation for daily life. I also would like to send a very special thank you to Nan for your in person support for Michelle and Bruce in Oxford! I am looking forward to reading more stories about your visit. With love from Satie
Dearest Michelle, you are very brave, pragmatic and wise. I sincerely hope that the saying "a problem shared is a problem halved" is true for you. Whilst your sharing all your fears, concerns, but also triumphs and wonderful moments, won't get rid of the cancer in itself, I hope that knowing so many are reading your posts, thinking of you and sending you love will spur on your recovery, and keep your faith and courage high, especially through the difficult chemo times. It has been a while since we saw you (both) down-under, but I remember it very fondly. Much Aussie love to you both, Karen xxx
As you start chemo tomorrow, you do know that all of us are pulling for you! We know there are no guarantees, but we also know that you are a very determined person, and that has to help. Thank you for sharing with us...
I was researching your prognosis on the internet and it said that smart beautiful women named Michelle with adoring supportive husbands named Bruce under all circumstances have a 100% of living a loving life to its fullest surrounded by friends and family who lift them up. According to the internet, most of the population isn't this successful at life. If it is on the internet it must be true. I am believing in this statistic 100%. I love you two so much. You are fighting the good fight, whatever you have to do in whatever time line it takes is perfect, no apologies. I've been thinking about what I should have printed on my jersey for the Ironman. What do you think? "Fueled by Michelle's Gusto" "Michelle Can Do It and So Can I" "Ironman IIIc"
Hi Michelle, I so appreciate being included in your blog. It is so well expressed and very touching. You are an amazing young woman and so kind and courageous to share all of this so openly with the group. It is a great example to others to quit moping around, suck it up and make the best of a difficult situation for yourself and for those closest to you. It’s what I think we all hope we could do, but the reality is that most people in similar circumstances don’t always get to that point. I am using you (without needing to mention your name) as an example to others I know who complain about things that are far less serious than what you are facing. So, thank you for the encouraging example you are providing for others that you will likely never even know about. You are right that it will indeed take time to process all of this, and it will probably be re-processed over and over again many times. But, you are correct to just take it as it unfolds as the days pass. Here is a thought about the hair/wig issue. What have you always wanted your hair to look like in your most ideal or your most wild thought? Purple? Red? Bleached blonde? Short, long, curly, bi-colored? Think of this as an unparalleled opportunity to look different for a time, and possibly even have a little bit of fun with it. Maybe a glam look for an evening out once in a while? I have several friends who have all arrived at the point where they wear wigs most of the time, since they like the way they look better than their natural hair. One of them is a blonde who looks fabulous as a redhead. Just a thought, for what it’s worth. You are also gifted with the wisdom that none of us ever knows what a day will bring. My closest friend throughout Jr. High and High School died suddenly at the age of 18. We had a short conversation just before she headed out for a lunch date. She died about an hour later in a freak accident. It changed forever how I looked at life. I determined never to take a day or a friendship for granted. Life is precious, and each day is to be treasured. In a sense, you are privileged to know and live this, and the card by your bed is true. Glad that it helps. I pray for you, Bruce, and your family daily. Among my prayers is that God will send you some unexpected blessings along the way over the next few months. Perhaps a new friendship, a deepening old friendship, or someone who just makes you smile for no particular reason. Again, thanks for including me in your posts.