Ototoxicity

Ototoxicity – it’s a big fancy word that I am learning a lot about this week. In short, some chemotherapy drugs can damage your inner ear which ultimately leads to a hearing loss (ototoxicity means “ear poisoning”). And in every situation where chemotherapy ototoxic drugs are discussed, it states “Cisplatin, and other chemotherapy drugs” which shows you where Cisplatin falls on the risk scale. Carboplatin is also an ototoxic drug and I’ve had a lot of that, so it’s not surprising I do have some hearing loss. Dr. B referred me to an ENT doctor, so this week I had a hearing test and a follow-up meeting with the ENT to discuss my level of deafness. In short, I have the hearing of a 70-year old. It’s not like it was surprising to me – I struggle in many situations, but I’ve just flat refused to do anything about it because I’m in my 50’s. But in the end, it isn’t going to get BETTER, and the longer you put off hearing aids when you need them, the less effective they will be. I didn’t know that before, but he explained the science and it makes total sense. So, next week I have a consult with an audiologist and will select hearing aids and pray that insurance will cover at least SOME of the cost since it is from chemotherapy damage. Also I have to go back every month for a re-check to be sure it isn’t creating too much of a problem. If it looks like I’m headed to the 80- or 90-year old level, Dr. B will likely replace it with some other drug. After all, this isn’t a life saving measure for me – it’s insurance.

I don’t love it. And I’m worried about how it will impact singing in a chorus. But there’s really nothing I can do about it. So the chemotherapy saved my life and I need hearing aids because of it. Would you trade perfect hearing for your life? Every. Single. Time. End of discussion.

Tomorrow is my second infusion with these drugs. I gotta say, it wasn’t my favorite. We enjoyed our time at the beach, but I was definitely feeling the impact. It’s such a balancing game between nausea, constipation, and diarrhea (keeping my commitment to “keep it real” here), with side effects from chemo and side effects from the drugs used to help offset side effects… On any given day, I am guaranteed some level of discomfort, at least until I find the right cocktail of medicine to help alleviate it. And lately, I have the most horrible terrible awful case of the piles (it sounds so much better than the alternative and more familiar terminology). I’ve been through all the solutions and treatments and have my ups and downs with it, but listen, that is some real pain. And you know, just one more damn thing. It’s how I feel some days, just one more thing. But you know what it’s not? Cancer. That’s what. (But I definitely don’t recommend googling “hemorrhoids” and “cancer”. Don’t do it.)

So that’s about it for this update… deaf with the piles, and maybe headed for bald again too. But I’m cancer-free. I’m not gonna lie – some days it’s harder to keep coming back to “but I’m cancer-free”. I’m looking forward to days that don’t have that “but” in front of them. Right now, it’s still there. And then I feel guilty complaining about it because I should just be grateful that I’m alive. And I am. But I’m surely ready to get back to a better overall quality of life!

 

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Avoid Contact Sports

Some days it’s harder than others to find something to laugh about. Today is one of those days. And this is the line that made me laugh. More on that shortly. First, my update…

Sooo, Dr. B called me in today to discuss next steps. He meets every Friday with a group of doctors (both in and out of his practice) in a meeting called the tumor board to discuss patients and treatments. They talked about me last Friday and my surgeon joined the meeting. Since what they took out was cancer he wants to do another big round of chemo, a protocol they’ve been using with good success at MD Anderson. In the end, taking out lymph nodes can leave behind “pieces” or cells and he wants to be very sure those are killed. So I am back on “platinum” chemo for 4 months, every other week. Intense drugs like the first time right after diagnosis. Nausea and fatigue, lower risk for hair loss. I even asked about waiting a couple of weeks since we are taking a much needed week vacation next week. We are celebrating my cancer free state (which is still true) and 20 years together. He said no, he wants to start right away since I am already 5 weeks post surgery. So here we go. Labs tomorrow, chemo on Thursday. 

I knew it was possible he would do something if the nodes were confirmed as cancer, but I really didn’t expect this. It has definitely taken the wind out of my sails this morning. So what made me laugh? I was reading about these drugs, Gemzar and Cisplatin and in the section “How To Care For Yourself” where it tells you to take anti-nausea meds, etc., one of the recommendations was to Avoid Contact Sports. Ok, noted. 

Trying to remember that 4 months is nothing when looking at the next 30 years, or even the last 3. I trust Dr. B completely so here we go. I’ll miss those contact sports but other than that, I’m clear I can do this. I get to be sad and angry today but then I’ll just do what I have to do. That’s how I got here after all. Now we just need to deliver the final knock-out punch. 

Thanks for your love and support through all the ups and downs, and surprises like today. 

MAINTENANCE

Maintenance: the process of preserving someone or something

It’s not really an exciting word, unless that “something” being preserved is your life. This week, for the first time since I was diagnosed, Dr. Benigno said I am now in maintenance mode. The surgeon got all of the remaining cancer, and now the treatment is all about keeping it from coming back. Some people stop treatment here, but ovarian cancer has such a high recurrence rate that Dr. B really likes to keep something going (if the side effects are manageable) for some period of time. So, for now, he is taking me off the Avastin (infusion drug) and keeping me on the Lynparza (pills). I am on a slightly different dose now since they finally released a higher dose tablet – so now I take 2 in the morning and 2 at night (as opposed to the 8 giant capsules twice a day). I hope these side effects are a little better since I’ve struggled with the anemia and nausea. We’ll see. 

I also saw Dr. Abdalla (surgeon) this week. He couldn’t have been happier with the surgery and with my progress. Tomorrow is 3 weeks and I really feel pretty good. I’m off all pain meds and moving well. It’s taking some time to get my energy back and get my whole GI system to stop freaking out but I’m getting there. 

Next steps: Monthly appointments with Dr. B and monthly infusion visits for CA 125 and port flushes. They do that to keep it working. Typically you keep the port for a year after the end of treatment. I’ll have a scan in a couple of months. Dr. A called this my “new you scan”. I love that. 

I’m super excited about all the “new me” things to come. Thank you for your continued support through all of this, and the calls, visits, cards, texts, and food to help us through this recovery time. Love y’all. 

Oh, and I’m still gonna write. I still got stuff to say. 

Going Home Cancer-Free

I am doing really well post surgery. It’s a bigger incision than I had expected, maybe 10 inches down the middle of my belly with a nice detour around my belly button, and I feel worse than I thought I would. But I don’t care. It won’t last forever and the meds offset the worst of it. 

The best news is that Dr. B came by this morning and said the pathology report showed those lymph nodes did have tumors and he’s super glad they are out. There really aren’t margins to measure with nodes but the surgeon didn’t see anything else when he had me opened up, and the most recent scans have only shown these 2 spots, the ones that are now gone. So I asked Dr B if I could consider myself cancer free and he said please do. Yay!!!!

We will discuss next steps later. I know I will stay on the Lynparza pills and even though they can be harsh, the research shows strong results with these PARP inhibitors preventing recurrences so I’m good with that. And the higher dosage pills are finally available so I can go to 2 tablets a day instead of 16 capsules! He will also consider more Avastin but we will discuss that later. Follow-up scan in a few months. 

Annnnd I’m going home today. Everyone is pleased with where I am 3 days post surgery, so hopefully late today I’ll be in my own house to continue to heal. 

I am so relieved and excited and grateful and still in a bit of shock and completely lit up with joy. I am super clear all of your support and prayers continue to be an integral part of my healing process. Thank you again and again and again. 

Quick update

My surgery was yesterday about noon. It lasted for two hours. And the doctor is very pleased with the results. He was able to get both lymph nodes and clean out that entire section. He told Dara that she was going to have to put up with me for many years to come. That’s all great news. 

I feel much better than I expected to feel this soon after surgery. I’ve been sitting in a chair and already walked around the hospital floor with a couple more times coming this afternoon. I expect I will be here until Friday. Will keep you all updated. Thank you so so much for your love and support.

Change of Plans

If I had a nickel for every time I wrote a blog about a change in plans, I could retire. That would be nice!

Surgery is Monday now. Yes, like in 4 days. My surgeon had travel plans that changed so they moved me up, way up in fact. Yay! Please bubble us up good that day for a perfect and successful surgery – it’s scheduled for 12:30pm. 

Thank you! Gotta go re-arrange my schedule. Again. So exciting!!!

And then there’s the anger

Well friends, it’s been a very long 2 weeks of mostly inaction. Where did we leave off? Oh yeah, being in pre-op when surgery was canceled. The following Tuesday I saw my cardiologist who immediately cleared me for surgery because she saw no indications of a heart issue, backed up by a perfect EKG, which matched the one I had in March, an echo a couple of years ago, and a cath procedure (with no issues) less than 5 years ago. In fact, she said with the hemoglobin level at 7, if I walk up the stairs and my heart is pounding and I’m sort of breath and I DIDN’T stroke out, then I’ve had my stress test. From there we went right back to the surgeon’s office. I think he might have been a little surprised she cleared me, but they promised to get me rescheduled as soon as possible and that it was “a priority”. I should hope so after all of the emotional and physical lead-up only to have it cancelled.

So, finally it is rescheduled, as of last week. For October 6th. Yes, 5 weeks after the first date. I had to undo my 4 week “out of office”, reset my client’s expectations of my availability, re-book some appointments and cancel some others, and basically re-rearrange my life.

And mostly I had to reset my attitude. I have been very angry.  This surgery was first presented to me on July 26th. A surgery that, while complicated, would make me cancer free. A surgery that was initially scheduled within a week of the first appointment with the surgeon. So, being in limbo and wait mode for over 2.5 months is a lot. I’m doing my very best to keep my chin up and stay positive and be excited because this IS exciting, but y’all, so much of this delay seemed unnecessary and it has so tried my patience – not my strongest suit to begin with – the back and forth, the not knowing, the very long delays. I am trying every day to acknowledge that this is all in the right and perfect timing, even if I can’t see why. Listen, having cancer and the constant struggle to stay positive and keep moving forward is not easy. Add to it a pile of really unbelievable medical bills (yes even with insurance) and for us, the fact that we are still struggling to get a new business off the ground. THEN add things like this to the mix, and it will break even the most upbeat person.

The anger is tough, it’s hard to keep at bay, and it has a way of sneaking up on you, exploding and then shifting to depression and sadness. I am sure that I’ve hurt some feelings in 3 years, that my bad days have come out in ways that have hurt my family and friends, and I’ve had times where I knew I was being a royal bitch, so consider this a blanket apology for that. Really, it has never been my intention to hurt anyone. Some days I think it might be easier to be a more depressed and negative person with cancer, and then perhaps the expectations would be lower. I know you all want to see me continue to fight from a positive place. I want that too. You miss the old Ann, I do too. Trust me, I really do. In the end, you really can’t know what this burden is, the full package of it, the pain, the fatigue, the frustrations, the waiting, the fear, the uncertainty, letting go of expectations of what you thought your life would be, the money, the stress, all of it – you can’t know unless you’ve lived it. It’s really really hard. And a lot of days I’m mad, and really trying hard to work through that. Imagine having the worst day of your life for a consecutive 1,147 days (to clarify, not all of these days have been bad, but they are all, collectively, worse than the 51 years of days that came before it). Anyway, it can make a girl real mad.

So I’m not trying to make excuses for bad behavior (well I guess I am), but I am asking for some of what I also need most right now, patience. Most days I am still that person living my life from a place of joy and love. Some days, some periods, it’s just harder to get there. This has definitely been one of those periods. But I also hope this serves as a good reminder to all of us supporting loved ones through difficult times. Be aware of expectations (I once heard expectations are “premeditated resentments”). Know that we realize we’re not easy to be around some days. And allow some space for the hard, dark, angry, sad days because they WILL happen, and as long as we don’t stay there, it’s ok to have them.

Onward and upward. Here we come new surgery date! No point in holding on to anger about it, I finally have something locked in now and I can spend the next 18 days being excited about it! And that’s what I plan to do. Thank you for ALL of your support, on the good AND bad days, loving me through this. I couldn’t do it without you.