Tag Archive | cancer treatment

Yay, Radiation!

Aug16

It’s been nine years since I last had the pleasure of being zapped. Back then, after chemo and surgery, I endured 33 sessions of radiation to my left chest. It didn’t hurt, but the fatigue was overwhelming. And boy did it tear up the skin on my chest.

Fast forward to today: I just completed the first of five sessions. This time it’s stronger radiation, and it’s aimed directly at the bone. If you’ve ever experienced bone pain, you know—it’s no joke.

What Radiation Looks Like Now

Here’s the routine: I lie on a custom mold they made of me during the prep session. It’s surprisingly comfortable, designed to contour my body so I stay perfectly still. The team lines me up, takes a quick CT scan to ensure accuracy, and then delivers the zap. The setup takes longer than the treatment itself, which lasts only 5–10 minutes.

But here’s the difference: radiation for stage IV doesn’t just cause fatigue—it knocks you out much faster. The body treats it like an attack, triggering inflammation and stirring up all the other lesions. Suddenly, everything is on high alert, and my whole system feels like it’s in battle mode.

Thankfully, oxycodone helps take the edge off, because I honestly can’t imagine what this would feel like without it.

The Plan Ahead

For now, I get to rest for a couple of days and (hopefully) regain some energy. Next week, I’ll go in Monday, Wednesday, and Friday, with the final session scheduled for the following Tuesday. The treatment itself doesn’t hurt, but the aftermath—the deep bone pain and crushing fatigue—certainly does.

The doctors say the pain and exhaustion could linger for up to four weeks. After that, more scans will tell us whether the radiation did its job. In the meantime, I balance rest with gentle movement to keep the blood flowing.

The Bell That isn’t Mine

In many treatment centers, there’s a bell patients ring when they’ve completed active treatment. It symbolizes the end of a difficult chapter and the start of a new one. But for those of us living with stage IV, there is no “end of treatment.” The bell isn’t meant for us.

Today, I rang it anyway. I told the receptionist that I would never get to ring the bell officially. The receptionist clapped and told me I could ring it anytime I want. That small moment stuck with me—because why shouldn’t I celebrate my milestones, even if my path looks different?

So I’ve decided to start a charm bracelet. One charm for every procedure I’ve had over the last ten years, and new ones for whatever lies ahead. My own way of marking the journey.

Moving Forward

This weekend, my focus is simple: rest, restore, and gather strength for the next round. Radiation may be tough, but I’m tougher—and I’m finding my own ways to honor the path I’m on.

When the Hand-Holding Stops: Stage IV and the Vanishing Act of Cancer Care

Aug13

When you’re first diagnosed with cancer, the world seems to spring into motion.

Suddenly, you have a nurse navigator. Appointments are made for you. Your phone rings with check-ins. Social workers appear with clipboards full of resources. The medical team seems to hold your hand every step of the way, from scheduling to scans, with a tone of urgency and compassion that makes you feel like the center of the universe — because you are. You have cancer. And everyone is ready to fight.

But if you live long enough to make it to Stage IV?

The hand-holding stops.

And it’s honestly kind of shocking.

Stage IV: Still Cancer, Somehow Treated Like Less

Let me be clear: Stage IV cancer is not an upgrade. It’s not a different game. It’s the same disease, just farther along. It comes with more complexity, more side effects, more emotions, more coordination — not less.

And yet, once you hit that label — metastatic, incurable, palliative — you become invisible to the very system that once felt like a lifeline.

No more navigator.

No more automatic scheduling. (Except with the Medical Oncologist, they are good about making sure you have your next appointment before you leave)

No more urgency.

No more empathy on tap.

Instead, you’re expected to be a pro at this.

You’ve had cancer before, right? You know how this goes.

So figure it out. Make your own appointments. Call back if you don’t hear anything. Coordinate between specialists. Wait in silence while doctors go on vacation.

And while you’re at it, try not to panic about the words “the lesions are growing.”

It’s Not Just Poor Communication — It’s Emotional Neglect

The emotional whiplash of going from “you’re in a fight and we’re all in it with you” to “we’ll call you… maybe” is real. And cruel.

At Stage IV, we are living with a terminal illness. That means every delay matters. Every appointment not made is time we don’t get back. Every brush-off or dropped ball adds to our fear and frustration.

We’re not new to cancer, but that doesn’t mean we don’t still need help — if anything, we need more.

The System Isn’t Built for Survivors — and That’s the Problem

The cancer care system is designed to walk people through a beginning-middle-end journey. Get in, get treated, get cured. If that doesn’t happen — if your cancer spreads, comes back, or never goes away — the system just… kind of drops you.

There’s no roadmap. No guidance. No hand to hold.

You’re not “curable,” so you’re not the focus.

But what they forget is: You’re still living. Still feeling. Still here.

And deserving of care that reflects that.

What We Need

We don’t need sympathy. We need structure.

We don’t need platitudes. We need people who call us back.

We don’t need miracle cures sent by well-meaning friends.

We need systems that treat us like we matter — even when we can’t be “fixed.”

Stage IV patients deserve the same dignity, coordination, and compassion as anyone newly diagnosed. Maybe more.

Because we’re not just “managing cancer.”

We’re managing life, death, emotions, relationships, fatigue, insurance, fear — and still trying to be human through all of it.

If you’re in the Stage IV club — and I’m so sorry if you are — just know:

You’re not wrong for feeling abandoned.

You’re not crazy for needing more help.

And you’re not alone.

We may have to fight harder to be heard. But our voices matter.

Especially now.

The Silent Hell of Cancer After Treatment

Jan12

Everyone thinks that once you finish chemo, surgery and radiation it’s done. You go right back to normal and aren’t you the survivor for getting through all that. Yay you!. Well, I sometimes think during treatment is the easy part. They tell you where to go, what you are doing and why. You spend a year just doing what you are told and try to keep up your strength to make it all happen. Then treatment ends. And when it ends. It just ENDS! Sure, you go in for follow up appointments that you have panic attacks over starting a week before. But no one talks about all the physical damage that you are left to tend to.

Right after you finish treatment you have a few days of excitement because you are done. Then you start to freak out and get depressed and anxious because all of a sudden you have no one to tell you what to do and you have to pick up all the pieces and put your life back together. It takes a year or more to get your mental capacity to work correctly. Right about the time your mind starts to work you then realize that your body is an absolute mess.

Yesterday I had an appointment with my Med. Onc. We did bloodwork again because I have some numbers that are out of wack and we are trying to figure out why. But they ask you all these questions about pain, which in the past I’ve brushed off. Well, when you have ER/PR Positive breast cancer you get to take these really cool meds for the next 10 years. I got to be put on Aromasin (exemestane).  I started out doing Lupron shots every 6 months to stop my ovaries from producing estrogen, and then the Aromasin to inhibit any estrogen that is still being produced from other sources. There are side effects to all these. I was in a really bad place after my last Lupron shot. I was just miserable. So we decided to just remove my ovaries so I didn’t have to endure the lupron any longer. Fabulous. At this point, I’ve been in menopause for the last year. And when you don’t have any estrogen being produced in your body, it starts to break down and change.

Right now because of the extream bone and joint pain I have, I’m stopping the exemestane for a few weeks to see if it gets better. If it does then we are switching me to Tamoxifen. I’m kind of hoping that this happens because then I won’t have the bone pain for sure and my hair will get thicker. (in theory!!) Oh…when you take exemestane it thins your hair so you see your scalp. Although better than being bald, it’s just unnerving.  But Tamoxifen is supposed to strengthen bones. So that would be nice. I would love to move without pain!!

A major issue that no one talks about with breast cancer is what happens to the ladybits. One of the major drawbacks of not producing estrogen is vaginal dryness. And I’m not talking you can just use some cream and it’s better. We are talking full out atrophy. Imagine your lips chapped to the point where they are dry cracked and bleeding. It hurts to talk. Same premise. They tell you to use over the counter suppositories but for some people, it doesn’t work. Yay! I’m some people. Now we have to sit around and talk about my lady parts to everyone.

Let me just say that when you go through breast cancer you lose all your inhibitions about your body. You have had more people look at, examine, study and touch your breasts that it doesn’t phase you anymore. And once you don’t have any breasts it’s very strange because you still cover up and hide things and there is nothing to hide but two really big ugly scars and a huge brown/gray circle where the radiation was done. So you ALWAYS know exactly where it was! Yes, I’m a little bitter about the whole thing still. I was not given the option of reconstruction. I was told by all my Drs. that it would probably be best if I didn’t. I didn’t push it because honestly…I heard the surgery can really suck, especially when you weren’t set up for it after a DMX. And I do actually like not having to worry about them.

Okay so now we are going to talk about the only thing I have that distinguishes me as a woman (in my eyes). And that doesn’t even work anymore! It hurts to do everything! So they have this procedure called the Mona Lisa Touch. I have been told about it for the last year. At first, I blew it off because…I won’t need it! I’m too young to have to worry about this yet!. HA! You also just went through a year of hell and yeah…you need to worry about it. When I was having my ovaries removed my Dr. (bless his heart) said that it was really bad and there was no discussion. I had to have this done. Okay. sign me up let’s do it. I had to wait until after my surgery to schedule it so I could heal from that.

Let me just explain. Insurance does not pay for this. As I was told…When the machine and technique came over to the US they didn’t want to have to wait for all the correct paperwork and regulations so they designated it under “cosmetic.” And insurance won’t pay for anything “cosmetic.” My argument is that if you are a cancer patient and insurance will pay for reconstruction of breasts…which is cosmeitc….they should pay for the reconstruction of your lady parts! But I digress.

I was told that it took like 5 minutes and was painless. Your initial treatments are 3 sessions 6 weeks apart and then once a year for maintenance. Okay. No problem. It costs $1950 for the first 3. $750 for each individual treatment. Well, okay, let’s do it.

I go in for my appointment. They explain what everything is and how it works. Basically, it’s like microdermabrasion on your ladybits….inside and out….with a laser. The whole thing is to remove the layer of skin that is atrophied so it can produce collagen and become healthy. Great!  There is a metal cylinder with markings on it, the actual machine and then a vacuum to suck up the flying debris of skin. Doesn’t this sound like it’s going to be fun?

They put a lidocaine cream over your bits and let you sit there for 7-10 minutes so you numb up. (wait…why do you need to numb anything…I thought this was painless!!!)

They come back and ask if you can feel anything. I’m like, um, yeah I still can. Well, my bits are atrophied to the point where I guess we are not going to get all the way numb. Yay! At this point, I’m super excited about the whole thing. They give you some cool glasses and a mask to put on. Of course, I ask why we are doing this. And it’s because of cells flying and well…this laser.

The first thing they do is a pH test. Evidentally the pH level of the vaginal area should be between 3.5-4.0. Who knew. Mine was 7.4. Yep….not good. As we do each procedure the pH level should go down as everything gets health, er.

Okay lets do this! They insert the cylinder. Fantastic. Then they insert this other thing that has the laser and also vibrates. It’s a very bizarre feeling, but it doesn’t hurt. Whew! Up until this point, I’m good. Then they start.  You’ve got the Dr doing the procedure and the nurse assisting. They start inside at the top and work their way down. For the most part, it was fine, every now and then it felt like either a pinprick or someone dragging a string along your skin. So I’m like, this is doable. Then they get towards the end. This is also where it’s the worst. And OMG. I felt it. Now I couldn’t feel all of it, just the parts that were super bad. Take that same pin, switch it to a larger needle and start jabbing. I jumped a few times, but it was tolerable. The last part they do is outside the vaginal canal. They go from the clitoris down to the perineum and everything in-between. It wasn’t excruciating, but it wasn’t pleasant either. I held my breath the whole time and I do have nail marks on my hands from holding them together. They did ask if I wanted to take a break at any point, and I said no. I didn’t curse at the Doc and tell him off…so it wasn’t completely awful.

When you are done they give you an ice pack. Yep. ice is good. It’s hot, it burns. This goes away after a few hours. Then you apply Aquaphor for the next few days. (no baths, clean the area 2-3 times a day and keep it moisturized while it heals) The whole thing from start to finish took about 30 minutes. So a little different than that 5 minutes mark they say.

Afterwards, my poor doctor just felt so bad that I was in any discomfort or pain. It so wasn’t his fault. I mean. the nurses who have reached menopause who had it done did not have the same experience I did. They did not have any pain and it didn’t take as long. I think if you are getting it done due to cancer treatments it’s not going to be a la la walk in the park. I mean why would it be. When you go into menopause naturally it’s gradual and your body has time to adjust. When you go into menopause medically, BOOM! You’re here! No gradual anything and it’s a lot harder on your body. Besides chemo and the medication you are on amplifies everything. So just keep in mind when these nurses say they had it done and it’s a piece of cake, they are coming from a different place than anyone coming from Cancerland.

When I got home I laid down with my ice pack and just rested. I did take some ibuprofen to help with the pain and discomfort. I removed the icepack about 5 hours after the procedure. Oh and the first time you have to go to the bathroom it hurts like a bitch! Sleeping was a bit uncomfortable. There will be blood so don’t freak out. That’s normal. And it doesn’t last. I mean, you just got a layer of skin obliterated from your body…

Today, as expected, everything is itchy and uncomfortable. No pain though, just a mild stinging that is like when you have a sunburn. I’ll lay low today and tomorrow should be even better.

I do believe that the next session will not be like this. I think it’s like when you get a really bad sunburn and the first time you put anything on it, it hurts like a bugger and then it gets better each time you do it. I do believe that the next procedure will have less pain and won’t take as long. But of course you know that I will do anothe update!

The next step in become a real girl again.

If anyone has any questions about anything please don’t hesitate to ask.

DX: 2/9/16 | Breast Cancer | Stage 3B | Chemo – DMX – RAD | NED: 11/7/16

 

I recently had a friend who made a comment about being at a store and a lady in front of her started talking to her about how she just had this procedure done. My friend was appalled that anyone would talk about something like this and with a complete stranger. I know to normal people it seems very odd. But until you go through it, you can’t possibly understand. When you have been in pain and suffering and you finally get a treatment to end it, it’s amazing. You are so excited that you do want to share with everyone. The fact that this is available to women and we don’t have to suffer in silence anymore is major. All I keep thinking about is all the women who can’t afford this and continue to suffer because insurance won’t pay for the treatment. It’s a very emotional subject that women haven’t been able to talk about. I feel so blessed that this treatment is available to me and that I’m in a situation that I can afford it.

I’ve got to do some research to see if there is any assistance for women to get this done. Noone should have to suffer.