Category: Uncategorized (Page 2 of 5)

Radiation therapy is pretty uneventful. The worst part of it continues to be the drive, what with the West Seattle Bridge being closed and the traffic being so unpredictable.

No real side effects. So far the only thing that really seems to be happening is that my skin is getting a little red.

Also I’ve gotten migraines every weekend, but that could be due to the driving as opposed to the actual radiation.

I have a little routine now – I get into “work” first, and check traffic as I do morning work things – read and answer emails, do meeting prep, etc. The plan is to leave an hour before the appointment starts, but I’ll leave even earlier if Google traffic looks bad.

The drive is usually fine until West Marginal Way South. If it starts backing up before the 6500 block I know it could be nasty. but I also know that if i get onto the First Avenue South Bridge by a half hour before the appointment start time I’ll probably make it on time.

Since I hate being late and I always leave so early, I usually end up getting there 15-25 minutes early. If it’s over 15 minutes I find a street parking spot and check my phone until 15 minutes before. Then Ill go to the underground parking garage. If the radiation spots are open I’ll park in one of them. If not I’ll park somewhere else. I’ve only had to park somewhere else two or three times, once I figured out where they were (they are spots B3, B4, B6, B8, and B10). They are right by the pharmacy entrance in the south building. I can just go in there, run down the underground corridor to the main building, and Radiation Oncology is right there.

If I’m early enough I’ll use the restroom first. Then I check in – I have to give htem my date of birth and Kaiser Number each time – and they send me back to the dressing rooms.

i always grab the same locker and the same changing room if I can – one time I accidentally walked in on someone in the changing room because I was so used to going to that one and didn’t expect someone else to be there.

I’ll send Sam a text to let him know I’m there. Then I change into a hospital gown and lock my stuff up in a locker.

Usually they are ready to take me back to the radiation room right away. They also ask my birth date and take my temperature, because of COVID-19. I have passed that test every time so far.

Then I go into the radiation room, which looks like this:

The bed thing is covered with a white sheet, and there’s a thing for your knees so you can bend them and be a little more comfortable. The person in the picture has their arms crossed at their chest and is wearing a gown – I lie down on the bed thing and put my arms up over my head – they have little guides to hold them in place. And of course I have to pull my hospital gown down.

The techs make sure I’m perfectly positioned on the bed thing. There are lasers that help them see exactly where I need to be, and they align those with the tiny dot tattoos on my torso.

Then they leave the room and go to their control room to administer the radiation (they have cameras so they can spy on me in the radiation room).

I get three doses each time. See how the radiation machine thing looks tipped? It actually rotates in a half-circle so it can shoot radiation at you over 180 degrees. So each of my doses comes from a different angle – one from the left, one almost directly overhead, and one from the right.

Here’s a pretty good diagram to show how the angled radiation hits you:

The illustration shows the hospital gown mostly on. I just pull mine all the way to my waist. I have zero shame.

There have been a couple of sessions where they’ve measured the radiation doses – they do this by taping electrode things to me before they start the treatments. And they have taken x-rays at least once.

Every third time I get two of the three treatments through The Bolus, which, as I think I probably mentioned before, alters the way the radiation is delivered. They put the bolus on, make sure it’s placed properly, and leave. I breathe shallowly while getting the bolus treatments because I’m afraid I’m going to dislodge it.

On bolus days they’ll take the bolus off for the last treatment.

Then I’m done! I go back to the dressing rooms, change back into my clothes, toss the hospital gown into the hamper, and leave!

And today I am done with Week 4.

It will be so nice to be done with it. Its a huge errand to have to run every day.

I’m also looking forward to getting my permanent implant because the tissue expander is so strangely shaped, and feels weird where the port is. The target would be 12 weeks from the end of radiation therapy – check-in with the plastic surgeon 6 weeks after I finish radiation therapy, around mid-October, and then surgery six weeks after that – early December.

Radiation therapy seems to be going well so far. Knock on wood.

The simulation appointment was back on July 13. That involved getting into the machine, getting measured, getting scanned, and getting like 4 tiny tattoos. Just dots. To make it easy for them to line me up in the radiation machine. They also made a “bolus” – this is a thin sheet of material that they melt and form over my torso – it is used to moderate the way radiation penetrates my skin. They put it in a microwave oven or something, and it was pretty hot when they put it on me. My skin was flushed afterward.

The simulation appointment took about an hour. The whole time I was lying on my back with my arms stretched overhead. What with the position, and the tattoos, and the bolus, I was pretty sore and tired afterward. Then I had to wait for the radiation onocologist to develop my treatment plan. They called to set up the radiation appointments on Friday the 25th.

Day One, last Monday, was also a longish appointment. I had to get all set up in the radiation machine, and they took a bunch more measurements and more scans, and talked numbers and stuff. There were two radiation techs, and then the radiation oncologist looked at some things and adjusted some things. And then I had my very first radiation treatment, which only took a few minutes.

The other appointments were super fast and easy. The bolus is used about every other treatment – they do a couple of treatments with it and one without. If it’s a no-bolus day you just get all the treatments without. On Wednesday they put some probes on me to measure the exact dose of radiation I am getting.

The worst part of it is the drive. Since the West Seattle Bridge is closed there is a ton of crap traffic to go through. That’s as much as 45 to 50 minutes each way. Last week I got two days of exceptionally horrible traffic and was super stressed out. So I decided I need to leave a whole hour before the appointment starts.

They do have special radiation oncology patient parking in the parking garage, and you get a parking pass to put on your dashboard for those spots. It took me until Friday to actually find them, but they are very convenient.

So I park, and from those spots I can run right in to the South Building without having to take stairs or an elevator, and then run along the underground tunnel to the Radiation Oncology department. Since I am a regular radiation patient, I check in at the front desk and they send me straight back to the changing area. There are lockers, and hospital gowns in the changing rooms. I take off all my top clothes, and put on a hospital gown, tie in the back. Then I go to the waiting area and the radiation techs take me right back into the radiation room to set me up.

There’s a bed you lie on, with a nice support for your knees, and you put your arms up over your head. They make sure you’re positioned just right. Sometimes there’s the bolus, sometimes not. Then they leave the room. You lie very still, and then they do the radiation. And it is really fast. Just a few minutes. Since I can’t take a cell phone and there’s no clock in the room (that I’ve seen, anyway – maybe next time I should look for one), I don’t know exactly how long. Five minutes maybe?

Then I’m done. I get up, I get my hospital gown back, go change back into my regular clothes, and GTFO.

I set up an Excel spreadsheet to track my treatments and and side effects. It’s funny to think that I’ve already got a week done – the time went pretty fast.

I got a prescription cream for my skin. I had thought the radiation was going to be limited to my breast and underarm areas but it’s actually a much bigger field than that. On my first radiation appointment they drew the radiation treatment areas on me, so I would be able to see where it is. It goes all over the right half of my chest, up to the base of my neck, about an inch around the right breast, and the whole underarm area.

I asked on Friday if I should stop shaving my underarm during the radiation treatments. They said yeah, probably.

Putting the cream on – it’s a very dense cream and one of the techs suggested that I mix it with a regular light unscented lotion to make it easier to put on. So that’s what I’ve been doing. It’s kind of a PITA chore to do. Also my skin is kind of numb since the surgery, and the tissue expander is weird, so it just feels weird to do.

I did feel extra tired getting up on Friday morning, so that’s the first inkling of possible fatigue.

My skin feels more or less OK so far. But it’s only been a week! My muscles around my underarm area did feel a little sore by the end of the week, but not much.

I had a migraine on Saturday. Probably because even though this seems to be going well, it’s a huge thing and a new thing and I have to do it every day. But if I have to crash every Saturday during this treatment I think it is ok that I do that, and not feel like I have to be super productive. I have cancer and we’re still in the middle of a pandemic. So I can give myself a break. Or lots of breaks.

I also have talked some to my boss about taking several days off during Radiation Month, and last week I found some proposed days to take, so I will see about getting those approved tomorrow.

Finally, I am scheduled to start radiation therapy. It’s 5 weeks, every day Monday through Friday, with weekends off. I start Monday morning.

I’m excited to get this started, and done.

It will be interesting to see what it’s like. The major side effects are fatigue, skin irritation (like a sunburn!), and soreness. But they’ve said it takes a while for these effects to start happening. And I should be able to drive myself to the appointments unless I start getting too fatigued. And I should try to stay active because exercise helps counteract the fatigue. I have people who will help with rides if I need them.

They also say the effects can last for several months after you’re done.

The schedule will not impact my work too much. I’ll just flex my schedule a little to make up for the time. The appointments themselves are not long – maybe 15 minutes. But the drive takes a while since I have to come from West Seattle, what with the high rise bridge being out.

I’ve also talked to my boss about taking some vacation days during the radiation treatments – I’m getting close to the maximum vacation balance and I need to start taking it.

I’ve made a neat little tracking spreadsheet in Excel so I can cross off the days. Because I like doing things in Excel, and I like crossing things off.

I’m cleared to start radiation therapy. My appointment for the simulation is tomorrow morning. That’s the appointment where they figure out how you’re going to be positioned in the radiation machine. They also give you a tiny tattoo, or maybe more than one tattoo, to help position you exactly right each time. The appointment is supposed to take 45 minutes to an hour.

Last week I had my second tissue expansion, which was fine. I felt a little sore and uncomfortable that day but it was no big deal.

Hormone therapy is still pretty much a nothing. I had my second leuprolide injection right after my tissue expansion. This time I got a 3-month injection since I tolerated the 1-month injection so well. And I got another 3 months of anastrozole. And still the only noticeable side effect is hot flashes. And even those aren’t so bad. I consider it a nice change from being freezing all the time.

And now I know the schedule for the rest of the reconstruction process. I do radiation, and when I am done with radiation I make an appointment with the plastic surgeon for 6 weeks out for a check-in. And if everything looks good, I will schedule my permanent implant for 6 weeks after that. Or less. So if we assume 4 weeks of radiation (starting a week or two from now), then 12 weeks of recovery time, I’m looking at most of August for radiation, and then the follow-up plastic surgery appointment by mid-October, and then permanent implant in late November or early December.

And at that point I’ll be done, except for hormone therapy (which I assume is 5 years) and continued screenings. And I need to make an in-person appointment with my regular oncologist in September.

I don’t like having to have so many doctor’s appointments, but at least I can at least do so many by phone or video.

Managing radiation every day for a month is going to suck, too. My work schedule is so spread out that the only time of day that is even remotely workable is mornings, so I hope that works out. I hope the side effects aren’t too bad. Having to get to central Seattle when the West Seattle Bridge is out is also not fun. There’s no location that is easy to get to from here.

But it’s only a very short time in the grand scheme of things! It might be that I should take a bunch of vacation days during that period – astonishingly enough, I’ve built up so much vacation time that I need to start using it or losing it. Why not figure out how to take several days off during that time? It will be 20 work days total. I could take a third to a half of that as vacation and barely make a dent in my vacation balance.

I’ll manage. I have lots of help.

I rode my bicycle to work last week. It was the first time I’d been in the office since March 27. I thought I hadn’t gone in since before my cancer diagnosis on March 25, but I guess I did because I found a paper that I signed dated March 27 and I know I couldn’t have physically signed it from home.

I have been riding my bike since, let’s see, June 6, which was 32 days post-op. I started really slow and worked up to the 7 miles and back to work, and then decided to go ahead and try doing a bike commute, and the actual bicyling part of was fine.

Of course it did take me forever to get my bike locked up in the bike room, and I walked almost to the work building and then decided to go back and get my panniers, so it took forever to get inside.

Also i was a little nervous to be there. We officially “reopen” on Monday July 6, and I wanted to go in at least once before then, so I could get myself re-situated before any kind of rush. They had re-sized the cubicles too, so all my stuff was packed up, and I wanted to get that set up again.

There were very few people in, and everyone who was there was wearing masks. They also provided masks to any customers who didn’t have one.

I was afraid to go to the restroom too often since it is public, so I didn’t hydrate myself nearly enough. Also I didn’t want to keep taking my mask off to drink water. And I didn’t want to get water out of the cooler. And I used hand sanitizer every 30 minutes.

When I got home I was very tired, and I had a migraine the next day. The nice thing about it was that it was not a vomitous migraine. My head, neck, eye, and back hurt, but I did not have to barf. The Mighty Sam speculated that the hormone therapy maybe took the edge off. Maybe so, but it was still worse than recuperating from major surgery. It blows me away that migraines are really that bad, but MIGRAINES ARE REALLY THAT BAD.

Next doctor’s appointment – tissue expansion 2.0 next week. Then I will see about getting with the radiation oncologist. I hope radiation won’t be too difficult. I feel like I’ve gotten off light so far.

More progress on treatment: yesterday I had my tissue expander expanded. That was a weird sensation. Not even uncomfortable, but just weird. It did start feeling a little uncomfortable yesterday evening, but I took some ibuprofin (permitted by the doctor) and that took the edge off, and I feel more or less fine today.

I go back for another expanding session in 2 weeks. Then, a couple of weeks after that, I should be ready for radiation therapy.

I did point out to the doc that it did look like they took a pretty big chunk out of the left breast as well (that was the benign fibrous stuff that they wanted to take out and biopsy just to be safe). He mentioned possibly doing that tissue transplant thing he mentioned before, but I assume that would be later down the line, after the radiation therapy. Probably at the same time we take the tissue expander out and put in the permanent implant on the right.

After a week of hormone therapy I still haven’t noticed any side effects other than just a few possible tiny hot flashes across my shoulders and back of my neck. But I’ve been having a few of those for the past year or so.

I’m going to guess that the most difficult part of all of this will be the radiation therapy. So far everything else has been very manageable.

I’m also making good progress on the fitness front. I started riding my bike again on June 6. I guess I’ve forgotten to mention that until now. I worked up from a 20 minute slow ride to going about three quarters of the way to my work. Which means I will be ready to start bicycle commuting soon. I think I’ll make it to the downtown area by this Sunday. I am petrified to ride on public transportation.

I had a Skype meeting with one of the managers at work today and after we were done talking about our business she asked how I was doing. We chatted for a while, but I said that I thought I was really more focused on what’s going on in the world now – a worldwide pandemic and the Black Lives Matter movement. It seems really weird to have a personal crisis happening at the same time as these matters of significant worldwide historical significance.

It was a good talk. I’m glad I work where I do, and that my colleagues and management are so supportive: both of me and of Black lives.

I started hormone therapy today! woooo. I feel fine, no side effects other than a possible hot flash across my shoulders, but this is something that’s been happening to me occasionally over the past year or so, so it’s nothing new.

My oncologist talked with the radiation oncologist and the plastic surgeon. Plastic surgeon does not want me to get radiation until my tissue expander is fully expanded, and I am fully healed from that. So my oncologist decided to get me started on the hormone stuff right away.

This morning i had my one-month shot, leuprolide, that induces menopause. Onocologist wanted to see how I do on that – we’ll touch base in a few weeks. If it goes well he may switch me to a 3-month shot, so I would only have to come in every 3 months.

Then I take Anastrozole every day. My oncologist said I could start taking it right away so I will take my first one tomorrow morning. I didn’t want to start today in case the combination of that with the injection gave rise to some giant side effects.

So far so good.

My secret hope is that it also shuts down my migraines. Because migraines suck SO BAD. In all of these diagnostic procedures and surgeries and treatment, none of has been anywhere near as bad as a migraine.

Phone appointment with my oncologist this morning. It went well – now I have a good idea of what to look forward to in terms of treatment.

The “oncotype” score was low, which means no chemotherapy. That’s definitely good in terms of how strenuous my treatment will be. I was already prepared to shave my head and learn to tie headscarves, and was checking new short hairstyles to adopt when my hair started growing back. But no need for that now, at least not for this iteration.

So the plan is to do radiation first, and then when that is done, start hormone therapy.

I go back to have my tissue expander filled on the 17th by the plastic surgeon. The oncologist thought i would need a couple of weeks to recover from that. It shouldn’t be a huge deal, but it would be good for the surrounding tissue to get used to the new size, especially since radiation causes tissue damage.

I don’t know how long the radiation will be yet – I remember from my earlier talk with the radiation onocologist that it’s usually 4 to 6 weeks of appointments every weekday. I hope it’s more like 4. Six weeks of daily radiation sounds like a long time. So that’s likely most of July, if we start 2 weeks after the tissue expansion is done. Then hormone therapy starts after that. My understanding is that hormone therapy goes on for 5 years and the main effects will be the same as menopause.

So that’s the deal.

I went in the Monday after surgery to get the drain removed. That was a pretty easy procedure. The nurse told me about how it was going to hurt for 30 to 60 seconds as/after she pulled it out. She removed stitches (which didn’t hurt) and then yanked the drain out. It was a little uncomfortable for like 2 seconds, but I wouldn’t call it painful. Super easy, and then I didn’t need a fucking drain anymore.

She said that the plastic surgeon was there and wanted to see me. So he came in and told me that the margins on the skin side were positive. I already knew coming out of the surgery that the tumor was super close to the skin, and the skin there was super thin because of it, so this wasn’t exactly a surprise, but I would have to come in for another procedure to cut out that little circle of skin. This would mean that I would have less skin, and my tissue expander would have to be slightly deflated, then re-expanded in a couple of stages.

Lameness! but manageable. The surgeon said this was better than having the positive margin be the other way, toward the chest wall.

This would be a way less involved procedure than the original mastectomy – just a sedation (like you would get with a colonoscopy) and local anesthetic. It was scheduled for the following Friday, 5/15, and the plastic surgeon said he would do it.

That was also a super quick procedure. Check-in time was 6:00 a.m. again, but I didn’t have to go to Radiology first – it was just straight to the pre-op station, change into hospital gown, get in the hospital bed, get the IV. I also talked to the anesthesiologist – the same one from before, Dr. Mc-Something, and had vitals taken, made sure I hadn’t eaten since the night before, and got some pre-op meds. Then I was wheeled into the OR, scootched onto the operating bed (it was a little harder this time since my chest was sore), and went right out.

I do remember waking up and hearing them talking in the room, and I said a few inane things – someone said they had 5-year-old twin sons, and I made some inane comment about that – and then it was right back to recovery. I hung out there for a while – they gave me jello and water – and then I felt fine enough to go out. The nurse walked me out to The Mighty Sam in the waiting area, and we headed home. The whole thing only took a couple hours, and I got a new post-op bra.

The pain after was minimal. I didn’t need any oxycodone at all and only took Celebrex for a few days.

I had a follow up phone visit with the plastic surgeon on Wednesday, in which I told him how well I was doing and he explained how the skin removal would affect how we approached the reconstruction process.

And I felt really good all last week. Better and better each day. If I had had to figure out on my own when I was well enough to go back to work I probably would have said last week. As it is I definitely felt well enough to go back on my scheduled day, the day after Memorial Day… today!

Surgery day was May 5. That’s now 12 days ago. I couldn’t take notes during the process so let me see what I can remember:

Check in time was 6:00 am. I got up at 3:30 so I could have a cup of black coffee finished before my liquid cut-off time.

We drove in and got checked in at Anesthesiology. I had some paperwork to fill out and I got called back pretty promptly. I brought my hospital bag and cell phone with me. I was able to send some text messages over the prep period, which was pretty extensive.

Sam waited in the waiting area, which looks like this:

They have a monitor that shows family members where you are in the process, and a color code for each stage.

Recovery would be in two stages. If I got to Recovery 2, i would get to go home that day!

The Mighty Sam was mostly by himself in the waiting area – there were only a couple of surgeries besides mine.

First I got to a little pre-op bed and got some hospital clothes to change into. Hospital gown, hospital socks, and a hospital cap thing. I had been worried about my now super-long disgusting hair but it worked fine – I had it in a ponytail scrunchy and the whole mess went into the cap. They also put me in a bed with a warm comfy blanket thing that they were pumping hot air into. They said that studies show that keeping operative patients warm leads to better outcomes. I was definitely warm and cozy the whole time.

They took some vitals. I then talked to the anesthesiologist, a Dr. Mc-something. He just explained about the procedure, how the anesthesia works and how I’d be monitored, and what to expect afterward, along with the measures they would take to make me comfortable, including anti-nausea medication. He asked if I wanted a scopolamine patch for nausea and I said YES. I got that, and you can leave it on for three days, and so I did leave it on for 3 days.

I was really thirsty. There was a lot of just lying around waiting. I also got some pre-op meds – if I recall correctly it was gabapentin, an anti-nausea medication, and celebrex. I also got to take it with water, which was deliciously refreshing.

At 8:00 i went to Radiology – a radiology nurse wheeled me up there. That was weird because I was totally capable of walking at that point. In Radiology I underwent a couple of procedures: One was a wire inserted into the benign mass on the left side, which took a while and was kind of uncomfortable – it involved a mammogram, then local anesthetic, then the insertion, then a couple more mammograms to check the position. The radiologist is really good (she was the one who did my MRI biopsy). Then I had the injection of a radioactive isotope so they could identify the sentinel node on the right side. That also involved a local anesthetic, but only took a few minutes total.

After that I was wheeled back to pre-op and got my IV. I was ready. The plastic surgeon came in to talk to me and made a few marks on me.

They wheeled my pre-op bed into the OR. They put a tag on my glasses case and said they would give them to me in recovery so I would be able to see. I got wheeled right next to the surgery bed and scootched myself over. That is a very, very narrow bed. They gave me a little oxygen to breathe and said they were setting up my IV. I drifted off very soon after that.

I remember my stomach feeling sore when I woke up. Also I was wearing my glasses. I heard the nurses talking to me. They had put me in a special support bra before i woke up.

At some point I was in a new recovery area, and they called Sam in. An anesthesiologist (not Dr. Mc-something, another one) came in to chat with us. I remember he said I had been fantastic under anesthesia and that everything had gone really well. They helped me get dressed but I don’t remember that very well.

After a while it was time to go home! i got wheeled to the Urgent Care exit and Sam ran off to get the car. I was able to get into the car ok and the drive home was uneventful. Sam kept warning me as he drove over bumpy spots. I remember that being a little uncomfortable but not too bad.

I slept pretty well that night. I took a few oxycodones on the two days after, but by the third day I didn’t need it.

I also had to deal with a drain. They showed me how to measure and empty it at my pre-op appointment. It was definitely a weird thing, to have this plastic tube hanging out of you. The post-op surgery bra they put me in was pretty sweet though – it has these rings that you can attach the drain collector thing to, so it doesn’t pull. You need to empty it either 3x per day, or when the collector is 1/3 full. You have to squeeze the fluid out of the tube and into the collector bulb, then empty the bulb into a measuring cup, and then track how many cc’s you collected. You can have the drain out when you have 2 days in a row with less than 30 ccs.

Recovering from full mastectomy with adequate pain management is definitely nowhere near as bad as having a migraine. I had Celebrex and Tylenol for most of the pain management. Anti-nausea medication when I needed that (did not need it after the 2nd day, since I wasn’t taking Oxy anymore).

My next appointment was just with the nurse to remove the drain. I will write more about that later.