The surgery was on Friday and it went well. It’s now Tuesday and I’m still in the hospital, but there aren’t any unexpected complications. Recovery is just slow from this kind of operation. I was completely miserable Saturday, Sunday, and Monday, but today seems to be going a little better. With luck I may be well enough to go home (back to Emily’s) tomorrow.
Category: Cancer Posts
Random thoughts the day before surgery
The last couple of days have been busy with some last-minute coaching calls before I’m officially “out of the office” for awhile. Today there’s nothing planned except my liquid diet and other fun aspects of GI cleanse. LOL. Last night my sister-in-law texted that it sounds awful, but not really. What I’m afraid will be awful is the first few days of recovery after surgery. But we’ll see. Anyway, I feel like I have some time today as I sit around and drink my fluids, so I’m hoping to do some blogging and emailing. Because I do not think I’ll be feeling very well after tomorrow.
I also have most of the day tomorrow to sit around, because my surgery isn’t until late in the afternoon. I’m on clear fluids only today, and then tomorrow I don’t eat or drink anything except 24 ounces of presurgery compex carb drink.
Yesterday afternoon we went in for my pre-op consultation. We were running a touch late, and it made the late afternoon start of the commute traffic even more frustrating than usual. Then on the way home we hit the later commute traffic, which was even worse.
Boston is a nice city but the driving is nuts. The drivers are aggressive. They don’t wait for a gap, they just go anyway. I understand why – if they don’t just go, they’ll never get anywhere because there are never gaps. But still, it’s disorienting when – without any warning – drivers are suddenly darting in front of you or across traffic when there’s seriously no room. They do it really fast with no warning, so it’s like cars coming at you from all directions. And the old roads are narrow and the intersections make no sense.
We’ve borrowed an old car from Emily. It’s a stick shift and I think it needs a new muffler. So we sound like a motorcycle as we’re trying to keep up with the stop and go, tightly packed traffic. Vroom, vroom! But we’re very grateful to have it, otherwise John would want a rental car. But I’m not driving in that traffic. I ever have to go somewhere without John, I’ll just Uber.
I have my groceries delivered from Whole Foods through https://primenow.amazon.com/. That’s what Emily does and I’ve discovered it’s a good deal. Prices aren’t as ridiculous as I would have thought, and I have Prime, so it’s free delivery with $35 minimum. With groceries, it’s easy to meet the minimum – if I’m a few dollars short I just throw in a chocolate bar! I’m not sure if delivery is available in Albuquerque, and shopping is easy in Albuquerque anyway – the traffic is a piece of cake and the stores are empty compared to here. But delivery is definitely worth it here!
Speaking of getting out and about…I’m a little nervous about the coronavirus coming to the US right when I’m having to do surgery and probably 6 months of chemo. Chemo is really hard on the immune system. I’m very glad I came to Boston for the surgery, but I don’t know where is best to be for the follow-up chemo treatments.
Surgery Scheduled
My surgery is scheduled for THIS FRIDAY! We only just found out this morning (Tuesday). My pre-op appointment is tomorrow afternoon, then surgery prep on Thursday and surgery on Friday.
It’s very sudden – after not hearing anything for over a week, and thinking it definitely wasn’t going to happen until next month. Aaaak! Dreading it, but really glad to be getting it over with quickly.
I’m quick trying to reschedule as many clients as possible to this afternoon and the first half of tomorrow. Then I don’t know when I’ll be feeling well enough to start coaching again.
What can you do
Many of you are asking what you can do to help me get through my cancer treatment – and I finally thought of an answer. I’m looking for book recommendations; specifically, light and cheerful books. 🙂
I have a new kindle and a new “unlimited” subscription. I like any genre that does not have an obvious political or religious message. I’ve been trying a variety of books that are well-reviewed and on best-seller lists, but it seems like most well-written books are upsetting.
For example, the most recent book just I read, The Dovekeepers, by Alice Hoffman, is well written and apparently well researched. It is set near Jerusalem around 70 CE. Because of the quality of the writing, I really felt like I understood the characters and their culture. The detail was amazing, and I felt immersed in that time and place. It was as if I was really there. But it was not a time or place where I wanted to be. War, terror, rape, murder, slavery, starvation, disease, suicide and massacre. It was an awful, traumatic experience – for the characters, and for me along with them.
I also recently read The Dressmaker’s Gift, by Fiona Valpy. It’s a novel about some young women who were part of the French Resistance during WWII who ended up in the death camps. It was also very immersive with excellent detail. It really put me there – and “there” was not a good place.
I know we need to understand that these unimaginably terrible things really did happen, so we will do what we can to keep them from happening again. But I’m just not up for consciousness-raising historical horror right now.
Prior to reading that those, I had tried a couple of lighter books, but they were stupid. Surely there are authors out there who write thoughtful, low-emotion books? I’m not just looking for a happy ending – I’m looking for less trauma throughout the book. Maybe I need to get comfortable with “stupid.”
So send me your boring, your bland, your dumb and slightly amusing reads, where nothing really happens and no one really cares all that much anyway.
Nothing’s happening this week
Seriously, who clicks on a link entitled, “Nothing’s happening”?
Last week, after several days of not hearing anything, we were abruptly called in for an MRI on Wednesday night and a consultation with the surgeon on Thursday morning. We knew the surgeon was going to be on vacation all this week so we were glad to be able to see him before he left.
At our consultation we got the impression that he was going to send his office instructions to get me scheduled for surgery as soon as he was back from vacation. He named some possible dates around the end of February. So we’ve been waiting for a call from his office to let us know when the surgery will be.
After not hearing anything for a couple of days, I called his office yesterday. His assistant said she couldn’t schedule me yet because she doesn’t have the instructions. She estimated my surgery would be likely be on March 17. This was a disappointment. I was diagnosed in late January, and scrambled to get out here within a few days of diagnoses. We initially thought I’d have surgery in February and now it seems like we’re looking at late March. I think it’s still possible it could be earlier in March, but probably not this month.
Meanwhile, John has gone to Washington DC for the week. He had business meetings to attend there, and also DC is the closest place to Boston where his company has access to some specialized equipment that he needs to do part of his job. We knew the surgeon was on vacation this week, so we figured it was a good time for John to be away, working. And as expected – nothing is happening. Just waiting.
Treatment timeline
The next step is surgery, which is not scheduled yet. We expect it to be sometime between February 24 – March 6. I expect to be in the hospital for a few days after surgery. Then the first 3 weeks are the hardest part of the recovery period.
10 days after surgery – sometime in mid-March – we will get the pathology report and find out whether I will also need chemo. If so, it will start about 6 weeks after surgery, so sometime in April, and go for 6 months (12 treatments, one every 2 weeks). So I should be done with chemo in October.
We are expecting a full recovery. I might have some minor lasting effects, but it doesn’t sound like anything worse than a bit of a nuisance. I do not expect to have a colostomy bag. There are a few worst case scenarios which would have me ending up with one temporarily, or possibly even permanently, but that’s very unlikely. I certainly hope that doesn’t happen.
If all goes well, the hardest part will probably be the first week after surgery, which sounds very miserable. The chemo may also be fairly miserable – it really depends on how I react to it.
I just want to remind everyone – have your colonoscopies done! I had no symptoms or risk factors and just went in for a routine screening because we’re all supposed to be doing that around age 50. I totally was not expecting this diagnosis. Do your colonoscopy!
Making a space at Emily’s house
When we first got to Emily’s house, she put us up in her guest room – a comfortable room on the main floor. She also offered us the den downstairs. I initially turned down the offer of the den. It’s in the basement, and it’s cold down there. And when I visited her last spring for a week, I was perfectly comfortable in the guest room.
But we’re settling in for a lot more than a week. Plus, John is here too (for now). And as we started to comprehend the rather unpleasant realities of colorectal cancer treatment and chemo, we realized that everyone would be better off if we were in the basement, with our own 3/4 bath down there, rather than sharing the main bathroom, just down the hall from the kitchen. Right? Lol.
So we bought a cute little electric space heater that looks like a miniature fireplace, set it behind the grate in the real wood fireplace in the basement, and went to work converting the large den into a cozy basement apartment.
Emily’s house is a beautiful old house in a nice suburb with large lots. Some of her neighbors have huge houses. Hers is bigger than it looks from the street, because of the basement, which is at ground level in the back.
The main floor from the front door is actually the middle floor. It has a bright, sunny living room with a fireplace.
Also on the main floor is a nice old style dining room with pane windows in a traditional New England style.
And there’s a large quirky kitchen with an enormous old top-of-the-line stove.
The third floor is where Emily, Bryan, and their three girls sleep.
The basement is a walk-out – it’s at patio level in the back. We’re taking over about half the basement: the bathroom, the den and a little kitchenette area that’s in the laundry room.
The kitchenette contains a few vintage cabinets, a sink, a deep freeze, a mini fridge, and a microwave. That’s also where their little dog, Donnie, has his pen.
The den is large, like a family room. It has high, basement windows on two sides,
and a large picture window overlooking the back patio.
It doesn’t really feel like a basement because of the full window on the back side. It gets plenty of light, yet at the same time it’s a private space.
Or it will be private, once we put up some doors! That’s our main project – doors. The den is currently open to the rest of the basement and the stairs going to the main floor. John is installing barn doors, which are super popular right now, and easier to install than conventional doors with hinges.
The doors are the only big project. Mainly we’re just buying furniture, and things like kitchen and office supplies, and all the random household stuff an apartment needs that didn’t fit into two suitcases.
Every day I put in an order or two at Amazon. It’s a hit on our budget, but I want to be fairly self-contained here, and not constantly running upstairs to borrow a plate or a serving spoon. And I want my stuff to be organized so I’m not literally living out of a suitcase. And obviously we need basics, like a bed and a table.
We bought this metal wardrobe for a good price at Target:
New bed, pillows, duvet, etc. from Amazon, with side tables from IKEA and lamps from Target:
This is a leftover section of couch came from Emily’s big sectional in the rec room; it’s just the perfect size for us:
We bought these cute tables and chairs from IKEA for our work space. John is working from home and spends a lot of the day here.
No, he doesn’t usually grin when he’s working. He knows his picture is being taken 🙂 He bought me the orchid for Valentine’s Day.
The bathroom was basically move-in ready, all it really needed was a shower head. We also bought a cart to store our things, because there’s no cabinet.
We also bought a table for the kitchenette:
Emily would like to paint over that coral color in the laundry-kitchenette area. Her house was full of wild colors and crazy-weird wallpaper when she bought it. She’s made a lot of progress remodeling, but isn’t done yet.
Last time I visited I helped with a little bit of the painting. I’m not sure if I’ll have time to get anything useful done before I start my treatment, but if my treatment is delayed until my new doctor gets back from vacation, I can help paint next week. She’s painting the walls a very nice light gray – it has almost a slight blue or lavender tint to it – very subtle. It looks very good in the rooms she has gotten done so far.
The bathroom is off the laundry room and kitchenette area – or it WAS until we put up this simple screen. Now the bathroom is off a short hallway that goes to the den. So we’ve essentially created a master bedroom with ensuite bath.
There’s a hallway with the furnace between the den and the bathroom and off that hallway is a door to the back patio. So we even have a private entrance. I’m looking forward to warmer weather to enjoy the patio.
I’m really enjoying staying with Emily. I like hearing the sounds of the kids running around on the main level above us. There is something about happy children that is fundamentally hopeful. I like being able to go upstairs to talk with Emily when I’m feeling bored or sad. I’m very thankful I’m not alone right now.
It’s really nice being able to set up what is basically our own apartment, yet we’re right here in the house with family. It’s like the best of both worlds.
And to top it off, the space comes with a cute little cuddly dog 🙂
He’s a 5 pound chihuahua named Donnie. Emily rescued him when he was about a year old. He’s about 10 years old now. He’s very sweet, and smaller than a squirrel.
His favorite spot is the sunny living room upstairs, but he also quite likes my electric blanket 🙂
MRI
First off, if you’re new to the cancer story, and you’re going “What?! Cancer?!” then start here. If you just want the latest news without my entertaining and informative story (😉), skip down to the last paragraph of this post. (I would insert a same-page jump link, but I can’t remember how at the moment.)
As of yesterday, we had been waiting for 3 days to see if we could get an appointment with the new doctor this week, before he left on vacation. We knew we needed an MRI done before the consultation. We had been told that his office would call to schedule on Monday, but by Wednesday late afternoon, I had pretty much given up hope that we were going to manage to schedule first an MRI and then a consultation before the doctor went on vacation.
A few minutes before 5:00 PM, as I had just settled down to get ready for my coaching client to call for their session at 5:00, I got a call from the doctor’s office. She wanted me to come into downtown Boston for the MRI that same evening. Initially she was hoping I could be there by 5:15 for a 5:45 appointment. Uh, no, not possible. It’s 4:55, it’s rush hour and we’re in the suburbs. There’s no way I could be there in 20 minutes. So we agreed on 6:15.
As important as this all is, it was really hard for me to cancel on my client with no warning. I take my job very seriously and it’s very unprofessional to simply fail to take a call that’s been scheduled and paid for. My clients pay a lot for each of these calls, and they carve precious time out of their day to make sure they are on time. Imagine if you took time off of work to go to the dentist, you show up, and then you find out the dentist isn’t there and you’ll have to come back another time! You’d likely find a new dentist!
Luckily I’m currently working with only a few clients, and I had already taken some time to warn each of them. I had explained that I was undergoing some medical treatment and I might need to reschedule without a lot of warning. So my client understood what was going on, and took it well.
It was a miserable drive into downtown in the dark and rainy sleet in rush hour. I am extremely grateful for John’s help with all this.
As soon as we got there, the technician had me change into gowns and she inserted an IV (for contrasting solution). She laid me down on the table, gave me a panic button, secured the imaging belt around my pelvis, and with only a brief bit of instructions, slid me into the machine.
This is what the machines look like (from google):
I’d had an MRI years ago, so I thought I was fine with it. But as soon as she got me into that machine I got a terrible case of claustrophobia! She hadn’t even started the test yet. I knew I needed to regroup before we started the imaging, so I squeezed the panic button and she rolled me back out again.
She explained that feeling claustrophobic inside the MRI machine was very common, but I felt like a total failure. I was crying and apologizing. And I was also quite worried. I was going to have to get through this test somehow, because they needed the MRI results to decide whether I needed to have radiation and chemo prior to the surgery or whether they could just go straight to surgery.
I realize now that the reason I didn’t have claustrophobia years ago for my first MRI was because it was migraine-related and they only had to put me in as far as my neck, in order to image my head. This time they had to roll me fully in there in order to image my pelvis. So we brainstormed – what was going to reduce the claustrophobia?
I think the thing that made the biggest difference is that the second time around I took a moment to turn and really look at the machine. I don’t think I even realized it was open at both ends! I think the technician should routinely point that out. Because when you’re laying on your back, you can’t see behind you. Before being inserted the second time, I took a second to familiarize myself with the size and shape of the machine, look in and see that yes, it was open at the other end.
They also removed one of the two pillows my head was propped up on, which lowered my head and allowed for more space between my face and the machine. We also agreed that I would keep my eyes closed, so I couldn’t see how closely the machine was surrounding me.
They also played music (which I had initially declined, because I didn’t think I needed it, and I didn’t want to have to listen to pop for half an hour). But they offered quite a range of music, so I got my MRI done to the tune of Spanish guitar.
They also let John rub the back of my head during the procedure. In addition to being soothing, this helped me remember that the machine was open behind me and I wasn’t in a tiny cave.
With these accommodations in place, I actually did fine. It took about half an hour, but it seemed to go faster than that. The half hour was broken up into several 3 and 4 minute segments, where the technician would tell me though my headphones if she wanted me to hold my breath for a moment or two, or if I could breath normally through the segment. The machine makes a lot of funny pulsing noises; different noises for each segment of the test.
We now have a definitive diagnosis: rectosigmoid cancer. That basically means the lesion is on the edge between the rectum and the sigmoid colon, which we already pretty much knew. The MRI also collaborated with the CT scan findings, which shows no sign of enlarged lymph nodes. This again suggests that the cancer seems to be confined to the lesion and has not spread.
Waiting
After not hearing anything on Monday, John went ahead and called the new doctor’s office yesterday. The staff hadn’t gotten any instructions from the new doctor yet, so they couldn’t schedule anything yet. They did, however, tell us that the doctor is going to be away all next week, and we wouldn’t be able to see him until the end of the month, so that was discouraging news.
Then my original doctor texted me and said that the new doctor has accepted me as a new patient, wanted an MRI done, and he thought all that could still happen this week. He told us to wait and someone from the new doctor’s office would be calling to schedule.
So we waited all day yesterday and didn’t hear anything. John left a message this morning, but we haven’t heard back. It would be great if they could get us in this week, but it is already late in the day on Wednesday and we haven’t heard anything, and the doctor’s going on vacation in two days. So it may not be until a couple of weeks from now.
Meanwhile, I’m still scheduling a few of my coaching clients – I’m just explaining to them that I might need to reschedule. I work with my clients over the phone, so I can coach from Boston just as well as anywhere else. And I feel fine. I don’t have any symptoms. I’ll feel fine until the treatment starts – one of these days.
No news yet
Since arriving in Boston a week ago, I had my CT scan on Tuesday (which came out well) and I had an appointment with a surgeon on Friday. My original surgeon decided to refer me on to another surgeon, because the cancer is in a little bit of a tricky location. He said he’d contact the new surgeon that same day, and that one or the other of them would contact me by Monday. The weekend passed uneventfully, and it’s now the end of Monday.
So this evening I texted the original surgeon asking if I should call the new surgeon’s office tomorrow and he replied, “Swapped messages. Waiting to speak to him. Will update you when we speak – hopefully tomorrow. The office will give you a crazy date – would hold off for now”
We are very lucky to be in direct contact with the doctors (thanks to Emily), but even that doesn’t make things happen immediately.
This cancer is a slow type, so there’s not a huge emergency. It’s just that we’re out here in Boston, waiting. And I want to get the treatment started because I’m dreading it, and I want to it over with! Also it would be really useful to know whether I’m going to be here for approximately 2 months, or if it’s going to be close to a year.