Overdue update: Radiation over, one last surgery to go

 Hello! It's been too long (there wasn't much to report). I finished radiation on Feb. 20th and have been healing up from that. My skin looks ok in most places, and then there are a couple of spots under my arm where it's cracked and the new skin underneath is very pink. I have been putting aloe on the general area every morning and night, and I have silver sulfadiazine (aka Silvadene) cream for the areas that are a little raw. 

Next week, I will have surgery to remove my uterus and ovaries (uterine cancer risk increases with certain cancer drugs, and my particular cancer is fed by estrogen, so the ovaries -- which produce estrogen -- must go). Today I went on for pre-surgery tests (EKG, chest X-ray, blood work) to make sure I was healthy enough to have the procedure done. Mostly things are looking good, but I'm neutropenic (my white blood cell count is low). This is not unusual for someone who's been through chemo and radiation, but it does mean that they'll need to check the morning of surgery to make sure my levels are high enough for them to safely operate.

The surgery itself will be laparoscopic, and done robotically! They'll make three small incisions and take everything out through there, it'll take two to three hours, and I will (assuming all goes well) get to go home the same day. After that, no driving for a week, and a number of other restrictions (basically "limit movements that engage your stomach muscles, no lifting anything heavier than 10 pounds" and a couple others) for six weeks. 

My partner will again be staying with me as I recover, and I'm going to take a week off of work in theory (I can check email on my phone so I might forward some emails?). I assume the cats will keep me company as well.

It's always a little bit of a bummer to find out that my white blood cell counts are low, even though it's totally understandable! It just makes me feel fragile. I hate it. I'm looking forward to getting through surgery (and it's fine if it needs to be rescheduled) and getting to the next phase (pills every day for 5 years, bone builder infusions every 6 months for 2 years).

Cancer takes a lot of time. 

Got my port out today!

We had freezing rain here! My partner lives near the hospital where I get my treatments, so I stayed overnight so my drive would be easier for radiation this morning. My car was COVERED in ice but I only had to go a few blocks. Radiation is going well. On Mondays, I have a short meeting with my radiation oncologist. She's great.

In the afternoon, I saw my surgeon and got my port removed! Since I'm done with chemo, and I don't have a regular schedule of infusions, it made sense to get it taken out. It took about half an hour, and it was a little more difficult to remove than they expected. I hadn't had it in for that long, in the grand scheme of things, but my body had tried very hard to incorporate it so there was a lot of tissue connected to it. This is called "scarring down." It sounds worse than it is. They cleaned and sterilized the area, cut through the scar from the port insertion (so no additional scarring!), cut through the tissue that was trying to hold on to the port, removed the catheter, and popped it out. I did not watch! I do not need to know what any of that looks like! But it was fairly painless and over quickly. I'm so happy with the job that my surgeon did, and I told him so. He said that they work very hard to make things look nice with a flat closure, and that people didn't always realize that they really did try to do an aesthetic job. I also saw the ultrasound technician who had done the ultrasound when I was first diagnosed in the hallway while I was leaving, and I was able to thank her in person for how kind she had been to me in those appointments. (She's also REALLY good at her job.)

I have talked to a number of people and doctors in my orbit about whether to get my uterus taken out when I get my ovaries out, and at this point I think I'm hoping to get it all taken out since I'm having a procedure done anyway. The downside is mostly "harder recovery," and the upside is "no more pap smears, no risk of uterine cancer."

Unrelated to all of these events, last weekend, one of the outside cats that I watch out for (I put out water for them, build little shelters for them for the winter, stuff like that) showed up on my doorstep starving and freezing. She yelled until I brought her inside. She's a very friendly cat, and I've been wanting to bring her in for a long time. She's been around since she was a kitten, for about 8 years. I got her in to see the vet a couple of days later, did bloodwork, and due to (we think) the extreme stress of having a bad tooth and not being able to eat, as well as having to navigate sub-zero temperatures for a week, she was very weak with a super low red blood cell count. She's on antibiotics and steroids (the antibiotics are just a precaution since she's been outside her whole life). In the course of pilling her on Sunday morning, she ended up breaking the skin on my pointer finger on my right hand. In my old, pre-cancer life, I would have cleaned it out, put antibiotic ointment on it, and then just kept an eye on it. But now, I can't afford to take things lightly. I went to a convenient care (like a non-urgent Urgent Care, basically) near my house (I am very lucky to live where I live), and the NP gave me some prescription-strength ointment to use, and felt that I had started treating it early enough to not worry. You may recall that on Mondays, I see my radiation oncologist! I made a point of telling her about the cat bite, and we agreed that, out of an abundance of caution, a course of oral antibiotics would be a good idea. I'm very fortunate to have this kind of access to doctors and medication. We're going to keep an eye on it, but I'm so much less worried now that I know I'm doing everything I can do keep myself healthy. Cat bites can get badly infected very quickly. Since the incident, I have been more careful about pilling the little cat, and we have done very well. 

Radiation update!

I start radiation tomorrow! It'll be 25 sessions, it's every weekday at the same time, and it doesn't take very long. They say about 15 minutes per session. Once a week, I'll meet with my radiation oncologist so I can tell her if I'm experiencing any troublesome symptoms or ask any questions I might have. I'm excited to get started (and even more excited to be done)!

Getting ready for radiation

 No updates because I'm kind of between stuff right now! I met with the radiation oncologist last week and learned a little bit about how radiation works. I've also continued to work with my occupational therapist to make sure that I'm able to get my arm above my head and in the right position for radiation. This week, I go in to get scanned. They take a scan of the part of your body that will be getting radiation, then the doctor uses a program to digitally "paint" the places to target, and this plan is reviewed by a number of different groups before it's approved, and there are a number of safety protocols in place to protect your heart and your lungs and to only treat the areas that need to be treated. I'll get three tattoos which will help them line my body up accurately for treatment. Once they have the plan approved, I'll start treatment! It'll be Monday through Friday, 15 minutes a day, for four to six weeks. I don't know when it'll start, but it'll be in the next few weeks. After that, I'll start hormone therapy, which will consist of a pill (anastrozole) every day for five years. 

Radiation affects everyone differently, so I can't assume that it'll go any particular way. I just have to do it. Some people's bodies react to radiation like it's chemo. Specifically, there is a thing where some bodies get radiation and think it's adriamycin, and then have the reaction they had to adriamycin. Adriamycin is the one they call "the red devil." It's the worst. This is a very silly thing that some bodies do! I am hoping this isn't the case for me, but I have anti-nausea drugs and plenty of practice with that feeling if it does happen. We'll see.

With radiation as with chemo, the best way to combat fatigue is to stay active. We're in January, so it's "real winter" (or "winter plus" as I like to call it). I have a bike trainer set up in the basement and I expect to get some good use out of that, as well as bundling up and going for winter walks. 

I'm ready to get another piece of this process started. 

I remember when I barely thought about my health. I don't think I'll ever have that luxury again, but that's ok. You take your health for granted when you're healthy, and you don't realize how precarious it is. It is very precarious. If you're healthy and able bodied, you're lucky. Appreciate it. It won't last forever, and that's ok! Nothing lasts forever! I'm really enjoying my life. I appreciate it more than ever. 

End of the year thoughts, big list

 It's been a very interesting year! Lots going on. Many changes, etc. I am thinking about how grateful I am that things have gone as well for me as they have, while also thinking about how it takes good insurance, a good in-network hospital that isn't too far away, money, an incredible in-person support system and more to be able to move through this as easily as I have. I realize how lucky I am, and I know that my experience is far from universal.

Even thinking about the sheer number of people who have helped me within the hospital and insurance system:

My gynecologist, who noticed I was due for a mammogram and pointed me to the breast center in the same hospital, since they do walk-ins
The mammogram technician
The billing support folks who got a LOT of calls from me and walked me through how things would work with my insurance
The check-in staff at the breast center
The ultrasound tech, who made a point to be the same person I saw every time I went back so I would have someone familiar as I went through a scary diagnostic process
The radiologist who spotted the lymph nodes and insisted on a biopsy
The MRI techs
The nurse navigator who helped walk me through my next steps once I got the diagnosis
The case worker my insurance company assigned me, who checks in on me every month and sends me information on things if I need them (she's a former hospice nurse and she's delightful)
The check-in staff on the main floor of the hospital
My oncologist and her nurse
My radiation oncologist and her nurse
The nuclear bone scan tech, whose wife was also going through chemo and who was very kind to me and showed me where all the parking lots were
The CT scan techs
The echocardiogram tech whose sister had cancer and wore a mask when no one else was masking
My surgeon and his nurse
The anesthesiology team
The various nurses who prepped me or called me before surgeries to make sure I knew where I was going and what I needed to do
The infusion center team
My physical therapist
My occupational therapist
The gynecological oncology team 

This is NOT a full list of the people who were part of my treatment! And I'm not even done with treatment! But I want to sort of show you how many people it takes for something like this. Just in one hospital. For one person. The sheer number of people involved in my care. It's unreal. 

I am so grateful to live in a city with a good hospital, for that hospital to be in-network, to have good insurance (thanks, COBRA), to have enough money that I never really worried about that element of this process (though I did worry about it because things can go sideways and even with a relatively low out-of-pocket max, insurance can be mysterious and all messed up), to be good at navigating phone trees and to be comfortable asking questions and pushing back on charges (this entire process would be a nightmare for people with anxiety, or people who don't have the luxury of time to sit through the long wait times on phone calls. I often look back on my customer service days and appreciate the things I learned during that time that have carried forward through my life). I am grateful for the people in my life who were there for me, from people who reached out to share advice to the people who sent me photos of their pets to the people who were part of my daily life making sure I had everything I needed.

I am so grateful for so many things. I got through the year. It sucked, it was hard, I felt bad a lot of the time, I've still got a long ways to go. But I feel good right now, and that's pretty incredible. 

tiny update

The drain holes finally healed up a couple days ago! So if you get this surgery and your drain holes take, say, three to four weeks to heal up? Very normal!

I went rollerblading today, just for a little bit. Lots of safety gear. It was so much fun. 

I'm feeling good. I'm working through the cording with my occupational therapist (I'll be in good shape for radiation, I can raise both arms, my right arm is a little tighter than the left arm due to the cording), she measured for lymphedema, and everything is looking good! No issues at this time!

Woke up with a few thoughts

 I wanted to write these down before I forgot. I was thinking about the most helpful things to me so far (I still have plenty left to do, but I think chemo and surgery were, for me, the biggest pieces of this process).

So here's a list of my best advice to anyone going through this (either directly or as part of a support system) so far:

1. Ask every question you can think of, and write everything down. If you're not comfortable with a doctor or a process, it's ok to ask for a referral or to talk to other people. You're going to be working closely with these people for a long time, and if you don't like or trust them, it's going to cause you even more stress. Don't do this. I happen to love my medical team, I feel comfortable asking them questions or pushing back on things, etc. This level of comfort makes everything easier.

2. Remember that you are more than your cancer, and you are more than your treatment. Find things that make you happy and hold on to them even when you feel terrible or your news isn't what you hoped for. You're here, you're alive, in so many ways it might not feel like it's ever going to be ok, but try to find joy where you can.

3. Get a referral for physical and occupational therapy as early as you can. You'll probably hear about it in your first consult, and even though you're going to be overwhelmed with information, if you have it in you to do this, you will not regret it. Being in PT and OT early has, I believe, made a HUGE difference in my ability to get through chemo, to get ready for surgery, and to recover from surgery. PT and OT. DO IT EARLY, DO IT REGULARLY!

4. Talk to people who have been through what you have been through. Not necessarily in a support group setting (unless that is something that appeals to you). It's really helpful to get practical advice and recommendations for post-surgery garments and strategies and things like that (or even "here is the candy that helped me deal with how saline tastes like nail polish remover" - for me, it was ginger chews). 

5. You don't have to talk about your cancer. But you can! I obviously love talking about it! It's part of my life, it's not weird or embarrassing for me, but I'm VERY weird and embarrassing so just do what you're comfortable with. NOT talking about it, to me, seemed so much more stressful. So this is what I've done. 

6. If you're getting surgery and you don't want to get reconstruction, talk to your surgeon about a flat closure (also called an aesthestic closure). I have found that surgeons, even very good ones, will leave it up to you to ask questions, and if they don't know that you want a flat closure, they won't assume that you do. I asked my surgeon about a flat closure, we talked about it, he did a great job, and I'm very happy with the way my surgical sites look. 

7. People are going to flail. A lot. They are going to want to help you and they aren't going to know what to do. Sometimes they're going to try to do things they THINK are helpful that are actually 1. not helpful 2. more work for you 3. super stressful. If possible, take these attempts in the spirit in which they are intended, but just be aware that people are going to basically get really dumb about certain things because they're freaked out and worried about you. It is OK to simultaneously appreciate that they're coming to this from a good place AND to be extremely annoyed about it. You can say no to offers of "help" that are not helpful. You can also tell people to leave you alone. Feel all the feelings. It's ok. This is not about them. This is about you. Do what you need to do to preserve your energy and your sanity. You are the expert on YOU. And you are ultimately the decision-maker on what you need in your life and what will be best for you. Don't let anyone make you feel bad about this.

8. If you love someone going through cancer stuff: Think about what you're asking of them when you offer to help, because sometimes the things you think would be helpful are actually more work for them. And if they don't accept your help or your advice, remember that they know their situation better than you do. So try not to take it personally, and just follow their lead. 

9. Be realistic about your energy levels throughout everything. Staying active is important, but rest is important. If you're feeling bad, tell your medical team. They'll have meds and strategies to share with you.

10. The people who consistently checked in just to say hi and to see how I was doing were so incredible. This tiny normal thing meant a lot to me, and helped me feel connected even while I was tired and feeling terrible. Little things like this (texts! emails! whatever!) are actually very helpful.

I still have quite a bit of stuff ahead of me, so this is not an exhaustive list. But maybe you'll find it helpful.