The Decisions

July 11, 2018

In the past 2 weeks, there’s been a lot of conversation about what to do with the new node in the middle of my chest. The conversations, what they’ve told me of them, have been around whether it makes more sense to include this node in the radiation fields or if it makes more sense to go back to a systemic chemo approach.

The pathology of the biopsy came back late Monday, and it’s positive for metastatic breast cancer. It is also HER2+ which means that the characteristics of my cancer aren’t changing. That part is good but also concerning at the same time. This also isn’t a huge surprise. It’s better than finding out that it’s lymphoma, or lung cancer or a new primary cancer of some other kind. The concerning part is that this tumor started to grow while I was on chemo, and am still on the targeted chemo intended to eradicate it.

Lots of questions going through my head. What is going on here? What’s up with my immune system? Why isn’t my body fighting this off? Is my cancer already turning drug resistant?

The answers are mostly “we don’t know.” What they do know is that they’ve had a patient whose cancer did something similar and they tried an approach they’ve seen work with other cancers that they’re going to try.  So this node, along with the others in the immediate vicinity, will be added to my radiation plan. Then, starting next week, I will be getting a new, platinum based chemo. Cisplatin is what’s called a radiosensitizer. When it attaches to cancer cells, it makes them more sensitive to the radiation treatments. The hope is that we’ll be able to kill all of the microscopic cancer that’s left. The other patient they mentioned is almost 2 years out from her last radiation and she’s doing well. I am praying that this will work for me as well.

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Another Lost Holiday

July 2, 2018

Cancer claimed yet another holiday off from me this week. First it was Thanksgiving. I wasn’t doing chemo yet, but it was happening the week after. My Thanksgiving was by no means “normal.” Then Christmas. Then my birthday, Easter, Spring Break, and Memorial Day. My niece’s 18th birthday and graduation had to go on without me. My 35th high school reunion is at the end of July. I can’t go to it, either. I just don’t know how I’m going to feel at the end of radiation – that’s when the Radiation Oncologist told me that the fatigue would catch up to me and I’d want to be back on leave.

In reality, it’s claimed my entire summer. Yeah. That’s more like it. Thanks, cancer, you suck.

After being held hostage for 7 months by treatment for this disease, I am finally starting to feel like a semi-normal person again. In general, I’m not needing a nap every afternoon, or needing to be in bed by 9:00 pm. A couple of weeks ago, I found that I could do maybe one of my normal road trips over a weekend without feeling wrecked. Parts of my brain function are just starting to come back. The neuropathy in my feet has subsided enough that I can go for walks again.

I was looking forward to finding a way to get out of the house and the area for a couple of nights – maybe go up to Victoria or on a guided photo trip out to the coast or something. Nope. Can’t do it. Not allowed. Then last week happened and made any thoughts of getting away just about moot. I no longer have any hope of having any sort of life before summer’s out. This really sucks. I don’t have words for this kind of suckage.

The fact that this node is metastatic is in that weird middle place of bad but not so bad that life is over. My gut feeling is that this is the beginning of a series of treatments that will keep the cancer at bay until I just can’t do the side effects anymore. This isn’t the life I ever imagined, nor one I ever wanted. Sigh.

Posted in The Not Cancer Part | Tagged , , , , , , , , , ,

New PET Scan – 2 Steps Back

June 29, 2018

Have I said out loud lately that I’m tired of feeling exhausted and run over by a bus every day? Well, I am, and now I’ve said it out loud.

I’m appreciative of the work I’m doing with the speech pathologist. She’s giving me a lot of helpful ideas and workarounds for the chemo brain problems I’m having. I’m still struggling to read a book. I keep having to re-read pieces and my brain gets tired quickly. She suggested that I read either for a set time, like 15 minutes, or to read a specific number of pages, like say, five, at a time. I told her my strategy for passing my certification test, and she liked it. It’s not different from before. I just have to start over because everything’s changed since I did it last.

Today was another clusterf*ck in the Infusion Center. For the past 3 weeks, I’ve been dealing with the Infusion Center schedulers over today’s appointment(s). First, because they overrode an existing appointment for occupational therapy (OT). Second, because after an email conversation with the oncologist after the CT, we decided to add Perjeta back to the maintenance chemo I’m getting til next year. The appointment needed to be moved around to accommodate both the extra time to get the 2nd drug, and adding in another appointment with the Oncologist.

Naturally, when I arrived a little after 9:00 after walking from the other building and stopping at Radiation to order a copy of my PET, the charge nurse starts reaming me a new one about not being there at 8:30. I tried to explain the situation and she wasn’t having it. Fortunately, neither was the Oncologist, who went and reamed the scheduling people. I got roomed and got my infusion and was sent on my way about noon. I don’t have the patience for this right now.

So following up from yesterday’s news, the Oncologists are talking about how to figure out what’s going on in the new spot. They brought in Radiology, Pulmonary and the GI people. The decision was made to have the GI docs do an endoscopy with ultrasound to get a look and a biopsy because it would be easier for them to get at it. The RO called me back around 5:00 pm. We’re going to skip radiation treatments Mon-Weds next week.

For whatever reason, I’m feeling relatively calm about this new development. Maybe because we don’t know why it’s lit up yet. They need to go look at it. I will reserve freaking out for after they’ve been able to get a look at it. I’m thinking now (and hoping) that it’s a spot where reflux has burned my esophagus and it’s trying to heal so the node is inflammatory rather than metastatic cancer.

Radiation was next on the plate. I was there early enough to sit down and map out the issues with my schedule for the next 5 weeks. There aren’t a ton of these appointments that need tweaking. It’s just frustrating to have to come back again, after giving them a list last week, to have to sit down and write them all out again. There is no room for having a life around the treatment plans, even when that having a life means going to other physicians to manage other things, some of which were caused by chemo. #CancerSucks




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Post Surgery Goodbye

July 9, 2018

I learned in the last week or so that my surgeon is leaving the hospital where I’m being treated and is headed to LA. I had some questions about my healing and was lucky enough to get on her calendar this week.

I learned a few things today. On the practical side, I need to be massaging my incisions in the shower to break up the scar tissue underneath. While it would happen on its own over time, they’re hurting a little, and this will help. I was a little concerned that my right armpit is still 100% numb. She said it will take at least 6 months for that feeling to return and that there will still be a spot there afterward. I also have a lumpy spot right about where I was feeling my tumor. I know this is the tissue that they moved over when they removed the tumor and the space around it. She said that it will not completely go away. That’s going to make those regular mammograms that much more important because I won’t be able to feel a new lump around that.

There were a few other things that I wanted her to be aware of because I wasn’t comfortable/happy with how they were communicated to me pre-surgery. The first of these is that the genetic counseling results could have really impacted my surgical decision. The hospital didn’t have a person in this role when I started my treatment. Then, once they did, she had to go through a backlog of patient cases before getting to me about a month ago. I got the results back last week – there were no genetic abnormalities in my profile, which means that I don’t need to worry about adding extra screenings for other cancers to my list of things to do. This also helps my sister and her kids going forward. She and my niece will need to be hyper-vigilant about taking care of their health to help avoid getting breast cancer like I did. Next, we talked about the surgical choices. I learned that the reason that we didn’t talk about prophylactic mastectomies much was because the studies are showing that they’re not helpful in changing survival rates, and that the risk of complications is way higher when just a lumpectomy is all that’s needed. I suppose, 25 years ago when I made the decision that I’d want a double-mastectomy, that was what was known. Now things have evolved and that drastic surgery is no longer needed. The last thing was that while I had an idea how I’d look after surgery, there were still a couple of things that were a surprise, and it would have helped me to see some before and after photos. I also suggested that would help with anxiety about what the incisions look like after surgery. I knew going in that she was going to use glue on my incisions, and I know that the scars after that are pretty minimal. After that we talked a little about her new position in LA. I’m sad she’s leaving but happy she’s landed such a great new position!

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New PET Scan

June 28, 2018

Today is PET Scan Day. It took an act of Congress to get this scan scheduled. Ideally, this would have been done before I started radiation. Unfortunately, the schedule for the machine/technicians was loaded through today. I’m a little nervous to find out my remaining nodes’ status. I want them to be clear.

I’ve been without caffeine since last week. I have been without sugar/carbohydrates in any form since Sunday. Getting back off the caffeine wasn’t as bad as it was last fall. I was extra tired for a couple of days, but no headaches or other withdrawal symptoms other than it’s contributing to my generally crabby mood. Sugar’s something I haven’t had that much of since starting chemo because almost all sweet goodies taste either nasty or so sweet that they’re sickening. The sweet stuff I’ve had more of lately is in the form of fruit and a couple of other snacks that don’t make me gag. The test also requires me to stop eating carbs like pasta and any veggies that aren’t green. Naturally, as soon as I stopped eating anything containing sugar or carbs for this test, that’s all I wanted. I was dreaming about noodles. LOL

One of the encouraging things to me is that there are cancer survivors with stories everywhere you go. Ladies in my neighborhood, or at the mall, the grocery store, Target, or Kohl’s. All survivors or related to breast cancer survivors. All of them tell me that all this agony is worth it. I believe them. The lady I sat next to in the Radiology waiting room was a cancer survivor waiting for her friend. I didn’t realize that she, too, was a survivor until they were about to leave. She asked where I lived, and when I told her, she said she has a yoga studio not far from where I live. She asked for a hug. I obliged. She held onto me tightly and started taking slow, deep breaths. She knows what it’s like sitting in this room waiting. She was helping to calm me down for my scan. I am grateful to her and those 3 slow deep breaths that helped re-center me this morning.

Apparently, no one had prepped the radiology tech to deal with my port. She had to call the IV Therapy team to come down and access the port. In all honesty, she’d have needed them to put in a regular IV, too. I have no veins. To make things more interesting, my port isn’t delivering blood return today. The first phlebotomist stuck the needle in the port twice. It hurt both times despite the lidocaine. She had to call for a backup person, who also stuck it twice. They could get saline in, but no blood back. So they left it in, put the radioactive agent in through the port, and blessed me ready for the scan.

One of the things I like about the PET is that someone went out of their way to poke holes in the ceiling tiles and put white Christmas lights that twinkle in the holes. It’s like having a little bit of night sky while you’re in the machine. They’ve also got music and an interesting slide show of pictures that you can watch for a while during the scan. It’s a little relaxing while being distracting. The technicians that run these machines are really nice, too. I had asked to see the scan when we were done. They were nice enough to accommodate me. I was happy to see that the 2 nodes that I’d prayed would be gone weren’t there. What I didn’t pray for was a clear scan, and I, of course, didn’t get one. There’s still a node in my armpit. I didn’t expect this, but it’s not the end of the world.

Because my port wasn’t playing nicely, the Radiology folks decided they needed to walk me down to the OIC to have someone figure out what to do about the port and de-access it before I could leave. The nurse down there also put the needle in twice to make sure she had it in correctly and also couldn’t get blood return. She talked to a couple of colleagues and then ordered a clearing agent. She injected that into the port, removed the needle and sent me on my way.

After 40 minutes to get the port addressed, I was now not in any way shape or form going to make it to my radiation appointment anywhere near on time. Traffic on a Thursday in Seattle sucks to start with, then add that it’s 3:00 in the afternoon and there’s just an acceptance that you’re not going anywhere on time much less in a hurry. The line to get to I-5 from the hospital was not moving. When I finally got down to the bridge over I-5, there were a bunch of squad cars and a fire truck in the middle of the street across from the on-ramp. Ah. Rubberneckers. Once I got on the interstate, there was just a lot of traffic and it was hard to move through the wolf packs. I ended up getting boxed in by a bunch of delivery trucks all the way to the exit for the airport. I got a call from the radiation technicians asking if I was still intending to make my appointment. I reminded them that I’d just been at the hospital downtown and would be there as I could manage with traffic. Once I got on to the highway that goes to the other hospital for radiation, there was another big backup due to an accident on that road, and the exit was backed up for half a mile. I had just gotten to the top of the exit, which was backed up from the signal a couple of blocks ahead. I finally got on the radiation table at 4:00 pm.

Today was also an appointment with the doctor after the treatment. When we got into the exam room and sat down, she asked something like how I was. I had to be honest and tell her that I was extra crabby because I hadn’t had anything to eat all day because of the scan and racing to get there. After offering me something out of the vending machine, she started talking through the results of the PET that I’d just left. I was surprised to find that she’d have any results so fast. Like I’d seen, there is still an axillary node (in my armpit) that the RO thinks is possibly an inflammatory node due to the surgery. It’s already in the field of radiation, so just in case it’s not, she’ll be adding an extra plan for a boost to that area. There’s also a new spot that we need to get some additional opinions about before figuring out how to proceed. This one looks like it’s near where my trachea splits between my lungs. So the RO will take my case to tomorrow’s Tumor Board meeting and get some input from Radiology and the Pulmonary team. If they think it’s something to look at, there will be a bronchoscope with a possible biopsy. If it’s positive, she’ll have to re-work the treatment plans because this area is not at all within the current radiation fields.

I’m not feeling freaked out by this yet.  I’m on maintenance chemo. It should respond if it’s not already. The other spot may or may not be something to worry about. There was a also a weird artifact that appeared to be on my skin that didn’t make sense. We’ll know more next week.

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7 Weeks Post-Op / 11 Weeks Post-Chemo

June 29, 2018

Today I’m 7 weeks post-op and 11 weeks finished with chemo. It’s been a long and rough week. I’m tired. Mentally and physically. The first couple of radiation appointments this week were stressful. The past couple of weeks have left me feeling frustrated and powerless. I’ve never been a big fan of being told that I can’t do something. I’m getting really tired of hearing that I have to continue to put the rest of my life on hold because cancer’s more important.

Let me say this today, too – if you get a breast cancer, a cancer diagnosis and they give you a recommendation that includes skipping chemo, take it. Don’t let your fear push you into poisoning your body if you don’t have to. New research is showing that they don’t have to give chemo to everyone, and that some folks are requesting it anyway. If I’d had that option, I’d have bypassed chemo. The side effects of this stuff are almost as bad as, or worse than, the disease, and they don’t go away as soon as you’re done getting it. For some side effects, it will take months, or even years to go away, if they go away at all. So, if you’re given a choice, stay chemo free as long as you can.

Actually, don’t let fear dictate any decision you make about your treatment. Educate yourself as much as you can on your options and discuss them thoroughly with your care team. If you don’t have a good relationship with your doctors, find someone with whom you can trust to help you make the best decisions for yourself. It may not always feel like it, but you do have choices.

Post-surgery-wise, I’m doing great. I have pretty decent range of motion this week – I’ve been working on this pretty hard. My incisions look pretty good. There is still some bruising apparent on my skin on both sides from all the work she had to do. There’s also still a lump on my right side where she moved and re-attached tissue to give that breast continuity where the tumor was removed. Those are all normal things, and I’m good with them.

At the Radiation Oncologist’s suggestion, and for the love of my bank account, I went back to work last week. I cannot imagine how people who aren’t offered short-term disability or other paid leave do this. I have great benefits and this is still a rough road.

The neuropathy is still there. Still better some days than others. I needed new shoes and found that Mizunos feel better than the Saucony’s did. I’m hoping to be able to get out and about more.

In the past week or so, I’ve noticed that my nail beds are turning purple again, I’ve started having joint pain after I’ve been sitting a bit, and my vision seems to be changing, which may be more that I’m 53, my eyes are changing anyway, and they don’t tolerate going back and forth between glasses and contacts as much as they used to. Although, I do have to say that my eyes are drier since starting chemo than they used to be. I’m also finding those pimples on and around my eyelids again as well as the sores I’ve had for months in my nose. I thought these weren’t side effects of Herceptin. I raised them to the Oncologist. She’s thinking they are late effects of the Taxol. So… lesson for the day: it’s going to take a very l-o-o-o-o-o-o-n-g time for chemo to leave my body and for my body to recover from being attacked by this poison.

Something I noticed a few weeks back and thought it was just because my body hair was growing back from zero, was that the hair itself is pretty fragile. When I look at my new unibrow and try to pluck some of the stray hairs there, they’re really, really fine and just come right out. I thought they’d get stronger, but they’re not. Maybe the next round they will be tougher.

The hair on my head appears to be filling in a bit more. It’s still about 1/2″ – 3/4″ long and pretty gray. It still feels pretty fine, so that part so far hasn’t changed much. I’m hoping it starts growing faster soon. I want to make it purple so bad…

My appetite is still not great. I’m still finding it hard to eat a lot of foods I used to. Some because my teeth are still sensitive, the rest because they just don’t taste good anymore. I guess the wonky taste in my mouth will be with me until I’m all done with the maintenance chemo. Maybe by then I’ll have completely given up on a lot of the things that taste gross now.

The chemobrain felt worse this week. Stress seems to affect it some, and it’s been a stressful couple of weeks. I’m still struggling a lot with reading. I can manage articles online, but I keep having to stop and go back and re-read sections in a book. Learning new stuff still makes my brain feel like pudding and so tired that I need a nap. I have noticed lately that I am not losing as many words, and that when I do, I’m getting them back a little sooner. While I was still on AC chemo, they wouldn’t come back at all. So thankful they are now.


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1st Radiation Treatment

June 25, 2018

Today was it. The first day of radiation. The first day of a major hurdle in my treatment.

I spent some time Saturday catching up with a friend from elementary and high school down at Pike Market before they had to go back to Minnesota. It turned out to be a nice day down there, and they taught me a trick for getting between the Market and the Waterfront that I didn’t know before, so that was cool. Afterward, I went on a mission to see if I could find soap that doesn’t have anything in it that will interfere with radiation. I found some Free & Clear shampoo at Target. They also carry it at Walgreen’s. I finally found some Cetaphil body wash that was unscented and didn’t contain any alcohol, oils or perfumes. It’s a little more expensive than regular body wash, but I only need it for about 8 weeks, so a couple bucks extra won’t kill me.

The gowns at the Partner Hospital where I’m getting radiation are awful. I mentioned this to the radiation techs last week and got a sympathetic murmur from each of them. Sure, you’re not flashing the world every time you walk down the hall.

The tech came and took me back to the treatment room and got me situated on the table. They pull up the plans on two big screens about 10 feet away that I can’t really see or read. I can hear the machine working to deliver the radiation beams to my body. When the plans were finished running, the tech came back and drew with a Sharpie on my chest again. The markings are so the doctors know where the field is on my body, and so that I know where to put the after-care creams/lotions.

There was one lady in the waiting room when I got there who was waiting for someone else. She wasn’t there long after I got changed and had made a couple of treks out to talk to the nurse. When I got done, there were two other ladies getting changed and ready for their treatments. One lady I talked to had uterine cancer, and part of her treatment required her to have a full bladder. I can’t imagine having to lie on that table for 20 minutes with a full bladder. That would be excruciating. She also told me that she’s fighting with lymphedema. They took 21 lymph nodes from her pelvis and so the lymphedema shows up sometimes in one leg and sometimes in both. Another reminder that there’s always someone who’s got bigger problems than you. Always.

I didn’t really feel any different until a few hours after getting home when I started feeling like my skin was burning a bit. I put some burn cream on it for now. It seems to have calmed down. I don’t know if that was a residual feeling from surgery, if it’s actually that my skin is already burning or it’s psychosomatic. In any event, I’m putting burn cream on it anyway to stay ahead of the curve. Thankfully, this stuff doesn’t smell bad.

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