After seeing a series of doctors (Dr. B, my surgeon, and a new surgeon), it’s clear I’m now on the “suck-it-up” plan as it relates to this “very large hernia”. The consensus across the board is that surgery should be scheduled after I complete chemo – 3 weeks after, which puts it into late March. I’ve already blocked out a week on my calendar for it. Of course, they all said if I couldn’t handle the pain, it CAN be done earlier. That’s like saying to me “betcha can’t do THIS”. Those of you who know me pretty much know my response to that kind of challenge. I’m doing what I can to help minimize the pain and am not opposed to the meds when I need them. They claim the bruising and swelling should get better and that will help, and the bruising improved some so hopefully that’s a good sign. And I’ve added a binder which seems to help some, but is much like trading one discomfort for another at times.
So, why the wait? Well I think it’s two-fold. First, this likely happened because of how chemotherapy weakens the body, so going into another open abdomen surgery with a weakened system is just more risky. Yeah okay I get that. And healing is much harder too. The second reason is what I am calling “the opportunity for an eyeball scan”. Dr. B is almost giddy about having an opportunity to take a look around in there – an eyeball scan is far more effective than a technological one. I really can’t be mad at him about that either. I mean, how nice will it be to have solid evidence that I’m cancer-free before starting into some maintenance?
So I’m at that place again – I GET it, and I support it, and I still don’t like it. I just feel like it’s been one thing after another for one thousand two hundred and twenty seven days (1,227 – it just seemed bigger to type it out in words). I think I know where I am and where I’m headed and then someone moves the goalposts. I mean the end result is still the same – CANCER-FREE, but the mental process is sometimes harder than the physical one. So once again, I’m processing through some anger about all of this – I took my days of self-pity and am once-a-damn-gain pushing forward because that’s what I do. OVER AND OVER AND OVER.
And still I rise. And still I embrace perfect health in my body. And still I accept and appreciate all of your love and support every single day. And still I am grateful for ALL of the blessings that are in my life because of this – things I wouldn’t know if this hadn’t been part of my path.
Today I learned I have a large surgical hernia that has to be repaired. Yes, because apparently I can’t just cruise into “cancer-free” status without “just one more thing”. It’s baffling. And frustrating. And in this case, very painful.
I did really well post surgery. I even had coughing fits and I do like to laugh, so I strained those muscles pretty well. And I worked on strengthening to get mobile and feel better. This past Monday marked 9 weeks so I felt pretty good moving some furniture around on Saturday. Listen I didn’t put a sofa bed on my back and walk 100 feet. I slid around some chairs and a sofa all within a pretty small room, so it wasn’t much. And I had not even an inkling of pain. I’ve been a little congested of late, so I am coughing some – really not much at all. On Sunday I coughed ONCE and felt this searing pain in my belly and felt like something popped or shifted. Tried some ibuprofen and such the last couple of days because I knew I was seeing Dr. B today. I had a terrible night last night and woke up with a pretty large swollen area in my mid-section. If you have ovarian cancer and you see a big bulge, I don’t care if you had a clean scan the day before, you have a moment of panic and I did. But by the time of my appointment this morning, google and I had figured out that I had a hernia. It took Dr. B about 3 seconds to diagnose me (it was gross – you can’t see the protrusion when I’m flat on my back which I was so he held down part of my stomach and asked me to cough and when I did, he and his PA both said “YEP, there it is” because apparently it pops up) and quite frankly we were all relieved.
I remember Dr. A (my surgeon) had said a lot of patients who had Avastin end up with a hernia. I was off of it pre-surgery, but I had been on it for more than a year so that could have had an impact here. Regardless, it’s large and excruciatingly painful when I cough, sneeze, or blow my nose, and it is mildly painful just to stand and walk around. He really wants to wait until the end of chemo to have it repaired (February) and then they can just use the opportunity to take another look inside to confirm there’s no more cancer. So we’re going to try that. I’m honestly not sure I can manage the pain well enough to go that long, but I’ll order a belt or binder and give it a try. He said we could do surgery anytime if it gets worse or I can’t take it. I don’t even think it would push chemo out much if any. He just likes the idea of using a “belly open” procedure as a chance to take a look around. I don’t mind that a bit myself.
Yet another opportunity for me to say, but hey, it’s not cancer which is awesome. I am pretty irritated still (and again) about that. But I am also grateful it really isn’t cancer. My CA125 came down from surgery really fast – I’m at a 12 right now, so that’s excellent news. I try to remember that when I’m bone tired and nauseated from these drugs, and when I see and feel this painful bulge. Like I said last time, I’m so ready to lose the phrase “but at least it’s not cancer” and just have some real smooth sailing. That’s coming I know.
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!
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: 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.
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.
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.