Posts Tagged ‘Making Strides Against Breast Cancer

10
May
10

How do you live with this?

Many people have asked us this question, or something similar.

There’s not an easy answer, although we’re finding out more about how every day.

To start with, we’re scared, we’ve cried, we’ve spent long hours late at night in bed discussing serious aspects of the situation. Most of you don’t know about this because it was just the 2 of us (well, the five of us if you count the dog and the 2 cats); I’ve mentioned it briefly in the blog, or at least obliquely, but haven’t gone into great details about the hair-ripping and teeth-gnashing (this time I didn’t have to shave my head. . .).

Do you see what I did there? I answered the question as best as I know how – we live with this by making it funny. Brian and I have always spent a lot of our time making each other laugh, and I think we just don’t know how to deal with *anything* without laughing.

On Saturday afternoon, Brian took me over to the ER for the usual chest pains, this time with a side of compression and mild panic attacks at feeling as if I couldn’t breathe. As we sat there in the room between doctor and nurse visits, one of the nurses came by and closed the door – at that point, I realized that we’d been laughing and joking, and probably disturbing the sick people in the rooms around us. Who but us, I asked Brian, would go to the emergency room and act like we’re out on a picnic?

(Side note: there was nothing detected in my left lung, and the doctor said “If lying down flat feels bad, don’t do it.” And yes, he did say exactly those words, but not in a mean way – basically there’s nothing they can do for something that has generic symptoms and no obvious cause, and for the most part, the symptoms were gone by Sunday evening. So we don’t know what the problem was, but unless they get more specific or much worse, it’s yet another waiting game. Sorry, didn’t want anyone to be worrying.)

At this point, I suppose I could write a scholarly article on the value of laughter as the best medicine, but all I really know is that when Brian and I laugh together, even about something as scary and serious as liver mets, it pushes back the darkness a little, and makes my heart feel lighter.

And of course, we live with this by depending on our awesome friends and family, and the doctors and nurses, and the kindness and generosity of the people we work with who call, visit, send cards and e-mails, and who laugh with us about the absurd and silly stuff as well as the scary stuff.

Just today, my girlfriend Sharon, who was scheduled to pick me up after chemo, showed how much she loves me by making sure I was taken care of when she was more in need of some tlc than I was. Due to a change in plans, my chemo got rescheduled to next week, so I ended up calling her 2-1/2 hours early to come pick me up. She wasn’t ready, but said she would be there as soon as she could. Knowing that even if she took ten minutes to get ready to go I would see her in 20 – 25 minutes, I said no rush. An hour later I wasn’t sure if I was more concerned or grumpy, but was definitely a little of both. Just then she pulled up. As I got in the car, she apologized profusely, because right after I’d called, her 87-year-old father’s assisted living facility had called to tell her that he was being sent to the ER. She just dropped by to tell me that her husband was on his way from his job to give me a ride home while she went to the ER to be with her father. I, of course, was mortified at having felt grumpy, and told her that Brian could have canceled his appointment, or I could have taken a taxi, or something; but she wasn’t having any of that. She needed to make sure I was taken care of, and her husband was a real champ to come get me. I owe them big-time.

And finally, one of the bad ways that I live with this is to cocoon. I tend to keep to myself, don’t reach out to others, and end up spending a lot of time alone. Now, I’ve always been this way, so it’s not something that changes easily; and in some ways, the quiet solitude is good for me; but I also can get too deep into my head and start feeling depressed. So thank you for keeping tabs on me, for calling/writing, etc. I’m working on trying to be better about reaching out; but you may have seen how I dealt with it at work – I wasn’t feeling well, and was worried about what the mass on my liver meant (I had a pretty good idea, but there’s always hope). I worked from home a lot around doctor appointments, when I was in I kept my door closed so I didn’t have to run into a situation where I had to tell someone about an undiagnosed problem, and when it was confirmed and I had started treatment, I basically dropped out of sight without a word to anyone but Shi-Yi and HR. That was pretty anti-social of me, but I just wasn’t up to dealing with the emotion of telling people about my third round of cancer, and this one much more grim than the previous two.

So we deal with it in some exceptionally great ways, but also we tend to isolate ourselves, which isn’t good. Probably much like so many others both before me and dealing with it now – is it just that we don’t know anyone who is dealing with something so bad, or that they deal with it so well, that we just can’t see how well they’re dealing with it? Maybe some of each. . .

p.s. It’s not too late to donate to the Making Strides Against Breast Cancer fundraiser. Just use the link on one of my previous posts to get there. The walk is over, but the need goes on.

09
May
10

Making Strides Against Breast Cancer walk was today . . .

. . . and I missed it.

(OK, so I started this post Saturday, but didn’t finish it.)

I’ve been immune-compromised since the last chemo, and giving myself neupogen shots. Apparently I caught something, because I felt OK Friday evening, to the point that I had everything ready to go in the morning for the walk; but in the middle of the night I started having trouble sleeping, with a little bit of everything chemo-side-effect-related cropping up. So unfortunately I wasn’t up for the walk.

Brian and Robin, however, were, so they went off to meet up with the Schrödinger Team over at the Rose Garden Arena, where “a good time was had by all”. They took the 2.5 mile route, and made good time. “They” are: Leah (thank you for organizing this year!), her husband Dan and son Marshall; Carrie, James, and Lucas (who, I understand was very well behaved! (Lucas, not James)(well, I didn’t hear that James was badly behaved, although he and Brian were apparently making plans for how they *could* get arrested. . .)); Dean and Dionne (Dean himself just had some surgery – good on him for being in good enough shape to be walking so far so soon!); and Evelyn, Chris, and Vada, who came down from Seattle for the walk. Forgive me if I missed anybody – Brian told me who was there, and I think I mentioned everyone.

I know there were several other people who made donations: Schrödinger made a sizable donation (and thank you Michelle!); Dean and Evelyn made donations as well as walking; Leah and Marshall donated/raised the most collective donations on the team; and Jenny, Dan, Kevin, and Carrie Weston all made donations. If you made a donation that I don’t list here, it is because some people chose to make “stealth” donations without putting their names on the honor rolls. But know that I appreciate those as much as the ones that are “claimed” ;-}

And special thanks go to Evelyn, who made me a beautiful quilt – I will post pictures on the blog soon. The label says:

“Nature’s peace will flow into you
as sunshine flows into trees.
The winds will blow their own
freshness into you, and the storms
their energy, while cares will drop
off like autumn leaves.”
John Muir

02
May
10

Paging Dr. Fine, Dr. Howard, Dr. Fine. . .

In reality, this post is a tribute to Dr. Awesome, a naturopath whom I met last Thursday for the first time.

Well, she’d come up behind me the week before and touched my hat, asking if everybody wanted to pet it? Truly, the hat I was wearing at the time, yes, people do want to pet it. It’s made with mohair and poly eyelash yarn and is extremely soft and feels good both to the hand and the bald skull beneath; with short-row shaping so it swirls; and instead of weaving in the ends, I braided them together so it has a little tail, too. Lovely hat in shades of maroon and purple, but getting too warm to wear much any more.

Of course at the time, I didn’t know this mystery petter was Dr. Awesome, but it tickled me that she was so willing to feel up a complete stranger’s hat in the middle of the doctor’s office.

My main goal for Thursday’s doctor appointment was originally nutrition, with a side of stress relief, and pain management for dessert. That was, at the time I made the appointment, the order I was most interested in covering the subjects. As it turned out, after talking to Dr. Awesome for 5 minutes, we rearranged it to pain management, nutrition, and stress relief.

For those of you who read this who have been through cancer treatment, you may understand immediately what I mean when I say it is a relief to talk to someone who “gets it”, particularly a doctor who not only understands but who validates what you’re going through and provides immediate, concrete solutions to some of the problems. You can talk to fellow sufferers all day and it’s good to hear that they have had the same problem and what they did for it, and in many cases, it will be of help to you when you encounter the same problem – never diminish the power of what experience can do for you.

But I at least tend to dig into the depths of my head and don’t even bring up problems in group, not because I don’t want answers, but because the group isn’t all about *me*, nor should it be. There are probably 12 – 16 regulars, and for any of them to get enough of a chance to talk, we often have to limit the number of speakers, and sometimes the depth of the discussion.

So having a medical authority validate that what I’m going through is real, is normal for cancer patients on chemo, and most important, isn’t just in my head, and doesn’t *have* to be dealt with just in my head makes me feel whole heaps better.

Pain Management: make sure I take the pain medications *regularly*, not sporadically; and take the smallest dose I can get away with. This might mean taking a higher dose in the morning than I think I really need, because for the pain to be worse in the evening means that I’m not giving it enough attention during the day. Also, hot baths with Dead Sea Salts are good, massage is good, and possibly acupuncture in the future.

Nutrition: Now, we all know the “Big C” is the cancer, right? Well, once you have cancer, there are other contenders for the title. Chemo might be considered the “Middle C”, since it is at one and the same time the treatment for the “Big C”, and the cause of the “Low C” (back into euphemism territory, here). I still think of the “Low C” as being the “Big C”, because it is much more immediate and pressing than cancer, and can make life pretty miserable. The pre-chemo drugs, the steroids and anti-nausea drugs they give you, and the pain medications I’m on all contrive to keep me from moving on. So Dr. Awesome prescribed something a lot less virulent than the clean-out liquid used for colonoscopy preparation, although she gave me that option if I wanted fast results. I chose the non-fireworks route. So now I’m thoroughly revising my menu, making sure I get lots of fresh fruits and vegetables, lots of whole grains and fiber, coffee (yay!) and supplementing with this product that makes moves smoother than an Italian gigolo.

And finally, Stress Relief: Exercise is a component of all of the three topics I initiated with Dr. Awesome. Exercise can reduce pain, if not overdone; it can help the diet and supplements do their nutritive acting; and it can help with stress relief. But for chemo patients, taking the dog for a walk even around one block may not be possible except when you’re at the end of a two-week break. Especially shortly after chemo, exercise may mean getting out of your chair and walking around the house once, or making that trip upstairs to get the medication bottle. And some days, it may mean standing up out of the chair for a minute or two. One’s body is under attack, and while it’s good to push the boundaries a little bit, pushing them too far, or having too high of expectations about what your body can do when it’s just out of chemo is bound to create a feedback loop that eventually immobilizes you by trying to do what you were able to do two days ago, when you were on your 2-week break, but since you just had chemo, there’s no physical way you can do it.

I’ve been beating myself up because my focus is so bad, and I have always had great powers of concentration. I’ve been taking it as a personal failure that I am not able to keep my mind on something for more than 15 minutes. With one sweep of her hand, Dr. Awesome pushed that self-blame out the door, and helped me see that I can live with it, and even manipulate it to my advantage. It isn’t a solution that is going to allow me to be able to work better, as that still demands unbroken sweeps of time to focus on a particular project; but it means that I don’t *have* to focus on anything for longer than 15 minutes. Pick up my knitting, and if my hands are cooperating right then, work until I feel the focus slipping. Then put it down and read a book, or play a game on my phone. Write a blog for a while, and if I feel like it, do some beading or quilting. As soon as I feel the attention slip, set whatever it is down. And try just resting instead of sleeping. Sometimes, just sitting thinking rather than sleeping is enough rest to let my body recoup the energy for my next couple rounds of knitting or reading or whatever.

Brian was there for this appointment, and although he has never indicated that he thought I was being a drama queen or exaggerating my symptoms, Dr. Awesome’s immediate understanding and recommendations of solutions tailored to my specific case made him understand just how difficult it can be to look physically well on the outside, and yet to feel like crap on the inside.

So all hail Dr. Awesome! She has empowered me to quit being my own worst enemy, and feel much more like a human being than a lump of bruised potatoes.

Truly, I have the fortune to be surrounded by so many wonderful, caring, knowledgeable doctors and nurses that I just wish everyone with cancer could be so lucky as to work with my team. I would not hesitate to recommend a single one of them.

01
May
10

So Many Things to Do. . .

A week ago Monday, we spent more than 2 hours with our attorney, figuring out a basic plan for our estate. This was the first time I’d met Mr. GoodLawyer, Esquire, and he turned out to be kind, funny, and knowledgeable. Brian has been doing business with him (usually by phone/e-mail) for more than 12 years, but it was only the 2nd time they’d met in person.

The whole business of planning one’s estate seems as if it should be a bit of a downer, which is probably why we’d put it off for so long. But there is so much to cover, and we did it with laughter, so it really wasn’t too onerous. Mostly, we’ve come to recognize that without children, we are planning for our (well, actually Brian’s) old age. We have enough to make it worth the time to do the living trust model, but not really enough to worry too much about tax planning after I’m gone. Of course, as we (and the lawyer) pointed out, there’s a major, legitimate assumption that I will go first, but it is always possible that Brian will step out the door and get hit by a bus, blah, blah, blah.

So we’re on to the business of figuring out fiduciaries and heirs. About the only thing I didn’t like hearing is that there is no good way to provide for the animals. Brian and I have friends who have said they will take Robin, and we figured that we would leave them a certain amount of money with which to take care of him (and likewise with the cats, but different people).

Mr. GoodLawyer pointed out that although you can say what a bequest is intended for, there’s no way to enforce that it is actually used for that. So in his grim world, you leave the money to the Humane Society, and request that they use it to take care of the animals until they are adopted – but there’s no guarantee that the Humane Society will do *that*, either. Also, and this makes more sense to me, by the time both of us are dead, whoever is left will probably have a whole different set of animals, anyway. Since I might live another 10 years, and Brian presumably has another 20+, Robin, April, and Jeremy will probably be long gone, and our neighbors who love Robin and will take him might not even like Rex (or King, or Lassie, or whoever).

The good thing is that living trusts are amendable, so we will provide for Robin and the cats, and change the terms of the trust if necessary down the road. In *our* world, our neighbors *do* love Robin and will take him and use any money we provide for taking care of him; as will the family who will take the cats.

And in the meantime, we need to think about heirs (not making them, fortunately, merely deciding. . .)

p.s. Schrödinger is signed up for the Making Strides Against Breast Cancer walk on May 8, 2010. This is a link to the main page. For the Schrödinger team, here is the specific link: Schrödinger. In addition to myself, there are at least three other people in the Portland office who have had family members with cancer that I know of. Although this is a breast cancer walk, please donate or walk in honor of all Schrödinger employees and their families who have had to deal with this devastating disease, whether it was breast cancer or some other type of cancer.

Brian and Robin will be walking with the group; and I will at least be at the starting/ending point, and will walk if I have the energy. Since I’ll be in the middle of my most recent round of chemo, I’m not sure what my activity level will be up to – most days in the middle/end of the chemo cycle, I have trouble with more than a couple trips up and down stairs. I might have to kick somebody’s baby out of their jogging stroller if I get out on the route and find I can’t make it the whole way ;-}

25
May
09

Crawling out from under

In this case, out from under the weight of chemo and its side effects.

Because of the pneumonia on top of the chemo, and how wiped out I was, I ended up taking 5 weeks off work, basically all of April plus a little bit of March and May. I spent a good portion of that time sleeping, and pretty much didn’t leave the house at all. Brian ran any errands that needed to be run, and I read when I wasn’t sleeping. Hooray for online grocery shopping with home delivery, and for Dinners Ready!

Back before I got pneumonia for the second time, Brian and I had planned a celebratory trip to the coast for the beginning of May – we hadn’t been able to properly celebrate Valentine’s Day, our 12th anniversary in March, or my birthday in April; and we wanted to celebrate the end of my cancer treatment. So we made reservations for three nights in Cannon Beach, the 1st, 2nd, and 3rd of May, at the Tolovana Inn, just two weeks after I had my last chemo treatment.

On the 1st, we packed up ourselves and Robin and headed to the coast. We had lunch at Camp 18, and checked into the Inn around 2:30. Our room was on the third floor, and so Robin had his first experience with an elevator. He was fascinated by the opening door, cocking his head, and stretching his neck to get a look at the inside. He walked in with no hesitation and sat down on command, but when the door started to close, it rattled and clanked and freaked him out so that he tried to back away from it as far as possible. The movement of the elevator itself didn’t seem to bother him, and by the end of the weekend, after we started rewarding him with treats for sitting and staying sat while the door was closing, he got over his worry and was perfectly fine with it. The noises of the elevator moving and the pings at each floor made him tilt his head in interest, so all in all, his first experience riding an elevator turned out to be a positive one.

Our room didn’t have a bedroom, it had a murphy bed in between the kitchenette and the living room. It was pretty comfortable, but I kept stubbing my toes on it when it was down.

We didn’t do huge amounts of stuff, because even though I was starting to feel better and the chemo side effects were diminishing, I was still pretty much a lump of pain and exhaustion, only with brief spurts of energy. Happily, my sense of taste and smell were well on the way to getting back to normal, so our meals were enjoyable even though I didn’t have much appetite. Each day we took Robin down to the beach to let him run around – he loves to run on the beach, so Brian would throw a stick for him or chase him around, or we’d get him to run back and forth between us. On Saturday there was a major wind/rain storm (same as in Portland), and the wind was blowing so hard that it was parting his hair on his side – fortunately, since I had so little energy, we were only spending 15 or 20 minutes on the beach at a time, so we were on the way back to our room when the rainstorm started. It was nice and cozy in our room watching the heavy rain blow sideways; but kind of creepy listening to the wind screech and howl through the front door, and clang something on the roof.

Other than that, we took a brief turn around the downtown area, windowshopping and stopping for lunch – Robin got lots of attention and several people wanted to take pictures of him; Saturday night we went to a musical put on by the local community theatrical company (quite fun!); had a nice romantic dinner at Newman’s at 988; played cards and word games in the room; read; napped; and just generally relaxed. We drove home on Monday the 4th.

Tuesday the 5th I started back to work half-time – that first week, I came home and took a couple-hour nap each day, and still slept through the night.

As I was going through my e-mail inbox that first day, I came across an e-mail from my friend and co-worker Jenny – she’d once again set up a team from work called “Supporting Julie” for the annual Making Strides for Breast Cancer walk on the 9th of May. Brian signed up to walk, and I went with him, although I wasn’t up for actually walking. Many of my friends from work came – Leah, Carrie and James, Kristen and her husband Bill, Jenny and her family (including her in-laws, who were nice enough to go walking on their vacation!), and Becky, who started at Schrodinger just before I started medical leave, so I haven’t gotten to know her yet – wasn’t that sweet of her to walk for me? The company I work for is called Schrodinger, and the team t-shirts always feature the name of the team and the company name if there is one. This year, the way they printed the shirts, the team name came out looking like this: Supporting Julie Schrodinger – all on one line, so it looks like the team was supporting Julie Schrodinger ;-} Thank you, Jenny, for taking the time to organize the team and to walk for me! I waited at the plaza that was both the beginning and end of the walk, and had a nice little nap while I waited. It was a beautiful day, and Brian took Robin on the walk – Robin had the usual freakiness about walking on the Broadway Bridge (it’s very noisy, and shakes and rattles from the traffic – heaven forbid that a big truck or bus should pass over while he’s on it!), but other than that he enjoyed the walk, and all the attention he got – one lady came over to pet him at least 4 times over the course of the morning!

I worked half-time again the next week, and it was better – I didn’t end up having to nap each afternoon once I got home, although it was tempting.

The weekend of the 16th/17th we spent in Tacoma – way back months before, we had purchased tickets to the Fleetwood Mac show at the Tacoma Dome (I actually bought insurance on them in case I wasn’t well enough to go, knowing it would be just a month after my last chemo). We had planned to leave Robin with our friends Sharon and Gary, but when I called my 93-year-old aunt to see if she was going to be in town for a visit, she not only insisted that we spend the night with her instead of at a hotel, but that we bring Robin, and she would dog-sit while we were at the concert. We got there around 2:30, and Robin just went nuts when he saw Aunt Julia – he remembered her from previous visits, and really thinks of her as part of his extended herd. We had an early dinner, then Brian and I headed off to the show – she only lives about 15 – 20 minutes from the Tacoma Dome, so it was no problem to get there, and traffic wasn’t too bad. The show was awesome – Lindsey Buckingham’s voice and playing was as good as we expected (we saw him solo in Portland a couple years ago, so had a pretty good idea what to expect); John McVie was the quiet stalwart he always is; Stevie Nicks was her usual lacy, floaty self, but I don’t think her voice has held up as well as Buckingham’s – she no longer was hitting the high notes on her songs, opting instead to harmonize with a lower note, which was kind of disappointing; but for me Mick Fleetwood made the show. I’d seen him in 1993 or ’94 with Fleetwood Mac, although neither Buckingham nor Nicks were touring with them – he was incredible then, and he was incredible this time, also. He is so into what he’s doing, you can just see it on his face, and he’s obviously having a blast. Our seats were good, but low enough that we couldn’t see him over the drums, so I found myself watching the screens a lot in order to watch him play. Wow – he’s intense!

When we got back to Aunt Julia’s, she said that Robin spent the first hour sitting and watching the front door, and both times he asked her to go out, he wasn’t interested in going potty, but wanted to go in front to see if we were out in the car. He spent some time lying in the guest room where our suitcase was, but then came out and lay down against her feet and they spent the evening watching TV. We chatted for another hour and watched part of Saturday Night Live before heading to bed. Sunday, we slept in, had a lovely breakfast and visit, then headed home. I napped a good portion of the way.

Last week I bumped my hours up to 3/4-time, and the first day I worked from home, which was good, because I was so wiped out I needed a couple hour nap once I logged out. The rest of the week went pretty well, and although I was tired, I wasn’t exhausted, so my stamina is slowly coming back.

Friday we had my one-month follow-up with the oncologist. He started me back up on the Femara, the anti-hormone treatment – I’ll be taking it for about 5 years (he said by then they’ll probably have a study that shows that 10 years is even more effective, so don’t plan on stopping then. . .). His only real concern was that since I’m still having muscle and joint pains that I might get worse because that is also one of the common side effects of the Femara. I don’t remember having a lot of problem with that – maybe some when I first started, but I don’t think it was too bad. I started taking it again on Sunday, and so far it isn’t getting worse, so hopefully that won’t be an issue.

He also said that I could get my port taken out any time – I had to wait at least one month post-treatment because the Avastin can cause bleeding problems and wound-healing complications. It’s an in-office procedure for the surgeon, so even though I’ll probably have to take a mild sedative, it’ll only be a local anaesthesia, and I can just take an afternoon off work to get it done.

Other than that, I asked him about my vision – I’d noticed that I was having some vision change during the treatment, and was having trouble reading the computer screen – he said that any chemo-related vision change should be gone for sure in 3 months. It’s definitely been getting better, but my lenses are getting old and the coatings are coming off, so I need to get new glasses, and wanted to make sure that I didn’t get my vision tested while there was still some chemo-related effect.

My peripheral neuropathy has been diminishing significantly, to the point where I haven’t been noticing any numbness or tingling, although the motor control is still not back to normal. I decided to stop taking the Glutamine, and took my last dose Saturday – as of this morning (Monday), I’m starting to feel some numbness and tingling in my fingertips again. Guess I’ll keep taking it for a while, although I think I’ll start with a lower dose and increase it if that doesn’t take care of it.

This weekend we have just been lazing around the house, relaxing, playing with the dog, and enjoying the weather outside.

So there’s the update – I’m caught up, and believe that with my stamina starting to increase, that I’ll probably be better about posting. No promises, but I’ll try!

15
Mar
08

March 15, 2008

Saw the ovary surgeon yesterday, and she says everything looks good, and I can start getting the scars wet now – there’s still quite a bit of crust on them, mostly held in place by the surgical glue they use to hold the outside of the scar together, and although it might bleed a little bit as it comes off, it’s now fair game. I have to be sure to watch how much bleeding they do, though, since I’m still on the blood thinner. She also says that I can start some very light exercises that use my abdominal muscles, but very few repeats to start with, and work my way up very slowly, stopping if there is any pain. The bruising and damage to the tissues tends to be exacerbated by the blood thinner, so it will take me longer to heal than it otherwise might have. I still have external bruises from the blood thinner injections that I was getting before the surgery, and it’s been around three weeks for those, with at least another week to go before they’re gone – she indicated that the internal “damage” from the operation will take at least as long to heal.

My digestion finally seems to be nearly back to normal – still a couple blips here and there, but for the most part, I seem to have gotten past the surgery/drug-induced difficulties. I haven’t had to take any pain pills for the last couple days – I do still get isolated pains, and when I swallowed some juice wrong, had a coughing spell that was very uncomfortable during, but the pain faded pretty quickly after.

I see the plastic surgeon again later next week, but I confirmed yesterday that I can now get the scars wet – I can’t shower on the front side, because the water drumming against the tissue can cause swelling, but I can let the water run over my shoulders from behind. I can also start doing a little bit more with my arms (not too much, because swelling is definitely a concern; plus still no pushing, pulling, lifting anything over 10 lbs, or too much repetitive motion), and they even said I can drive if I feel comfortable, even though I have a manual transmission. More than anything, I suspect that what will drive my driving is how tired I get. Brian drove my to my support group meeting on Thursday morning – I hadn’t been for a couple months because it interferes with work hours, so I hadn’t seen anyone there for a while. After the meeting, we had a little lunch at the hospital cafeteria, and my friend Sue drove me home, with a short stop at the grocery store to pick up some half-and-half. After she dropped me at home, I basically just collapsed in my chair and after watching an episode of Stargate SG1, slept for two-and-a-half hours. And Friday, I rode downtown with Brian because I wanted to go to my Weight Watchers meeting – hadn’t weighed in for the previous 2 weeks, and I didn’t want to miss another one. However, Brian had an early meeting to go to, so I ended up waiting in the Borders bookstore cafe for a couple hours (bought some books and had some tea, so I was mostly sitting down the whole time). From there I walked over to Pioneer Place and the meeting (down 5.8 lbs for 3 weeks – whoo-hoo!), and then met Brian back at the car. Then we drove to the follow-up appointment, and it was while I was sitting in the warm, not-so-comfy exam room that I realized how tired I was – from walking a total of about 2-1/2 or 3 blocks and otherwise mostly sitting down all morning. When we got home, I slept for three hours, even with Robin going nuts when Brian came back from a client site, and the phone and doorbell ringing. So I still don’t have a lot of energy to spare, and the doctor said no matter how healthy you look on the outside, it just takes a certain amount of time for the body to recuperate. Another two weeks should have me ready to start back at work at the very least half-time, probably more – she said it would be a mistake to push too hard and have a set-back.

At any rate, I’m taking it very easy – watching a movie or two, some Stargate episodes, lots of reading and napping. Poor Robin is happy to have me at home, but disappointed that it involves so much sitting around. He thinks I should be able to chase him around the back yard, or at least play rope with him. Augie the Dorkie and his mom came for a visit on Tuesday, and the two boys entertained themselves while Cathy and I visited. I still can’t knit or bead or anything, but hopefully soon.

Oh yeah – the ovary surgeon said that it would only be about 24 hours after the surgery until the estrogen built up in my body dissipated, so that I would start experiencing whatever symptoms of menopause I’m going to have very quickly (i.e., as of now, I’m probably at the worst it’s going to get). Basically, I do have my hot ‘flashes’, and sometimes more of them than other times – I haven’t yet had a chance to identify triggers – but they’ve been very controllable by removing my hat or scarf, and at night pushing back the covers if necessary. I also dug up a little hand fan, which helps when I’m in a situation where I can’t remove any more clothing. Definitely layering is in my future ;-} She thinks I might experience a little bit more once I start taking the aromatase inhibitor (Sunday). Hopefully it won’t be too bad.

Even after sleeping in this morning, I think I’m ready for a nap. Cheers!

Julie

25
Feb
08

February 25, 2008

The countdown begins . . .

We met with both surgeons last Thursday – everything is set to go for this coming Friday. I have a pre-admissions appointment Tuesday morning, where they take a broad medical history, make sure any medications I need are arranged for, and do any necessary blood tests.

First, my chemo port will be removed. While the surgeon who did my mastectomy does that, the plastic surgeon will work on my left breast. He expects to finish both sides in roughly an hour – the incision is made over the existing mastectomy scars, and a slit is made in the muscle that overlays the tissue expanders. The permanent implants are inserted, drains are inserted, and everything is closed up.

The ovarian removal will be done laparoscopically, using a Da Vinci robot. I went to their web site, and you can even view video of surgery being performed. Frankly, it’s a lot less messy inside than one would expect. It’s sort of like doing surgery with a Wii.

I have to be on a clear liquid diet on Thursday, only broth, clear juices, water, jello. Any other ideas of clear liquids that anyone can suggest are welcome (I’ve already considered the intoxicants – probably a gin and tonic would be fine, but it would require quite a few of them to stop me from being hungry).

Our neighbors are going to dogsit Robin on Friday – so while I’m under the knife, he’ll be romping around with Jasmine. Doesn’t seem fair, does it?

Last Friday, I started noticing that I seem to be having temperature-control problems, more than just the usual throwing-off-the-blankets-at-night kind (although those are still extant). Rather than hot flashes, I’m having hot sustaineds. I especially get very hot if I’m wearing a hat or scarf, and as of today, I’ve had to spend most of my time bare-headed, because every time I got cool enough to put my hat back on, it would take very little time for me to reach “boiling” point. This is all well and good during the winter (I didn’t need to buy that down coat after all!), but it’s going to be expensive during the summer, having to run the air conditioning constantly at 50 degrees ;-}

Anyway, not really much else to tell – Brian will post after surgery to update how I’m doing. I will be in the hospital for at least one night, maybe two. It’ll really depend on how they feel I’m doing clot-wise (or, of course, if there are any complications).

A very big thank-you to Schrodinger (my employer) for making an extremely generous donation to the Making Strides Against Breast Cancer event – and to everyone else who has made donations so far or joined the team to walk. I am humbled and overwhelmed by the caring and support that everyone has shown me personally, and I greatly appreciate the willingness to support the cause, also.

Julie

17
Feb
08

February 17, 2008

Not much to talk about this week.  I spent two days at home with a bad cold – BC (before cold), I kept saying that I was recovering fine, no problems other than a little fatigue, but basically, I was over the chemo and the surgery.  I now believe what everyone has been saying – that you don’t recover from chemo that quickly.  There’s no way this was such a bad cold, but it hit me hard.  On the other hand, even though I’m still congested and coughing, I don’t feel as wiped out today as I did last week.

I didn’t get weighed in Friday due to being sick; but my home scale was at least 2 pounds down from where it had been the previous Friday, so I’m sure I’ve made some progress.

Other than that, we meet with both surgeons on Thursday, and we’ll finalize the details of what and how – my biggest decision (now that I’ve agreed to do the ovary removal surgery) is whether I’m going to have silicon or saline implants.

Captain Peachfuzz signing off!

10
Feb
08

February 10, 2008

Just call me Captain Peachfuzz . . .

Biggest news first: I have hair! As of 5-weeks-post-chemo, I couldn’t see or feel any hair besides the stubble that never seemed to go away in the first place. On Monday I thought I felt a little bit, and by Wednesday, I definitely had peach fuzz that was both tactile and visible. It’s very soft, mostly white, and looks like it’s pretty thin so far, but historically my hair has grown very fast, so I suspect that before long I’ll exchange the peach-fuzz look for the dandelion look. There’s no warmth involved, however – I still need to wear scarves or hats to keep from freezing. Every once in a while I’ll get too warm and take off my hat to cool off, but that’s pretty rare.

My weigh-in went great on Friday – I finally made a significant loss of 2.6 pounds in one week. I was starting to get very frustrated by the minuscule losses. Then, of course, we went out of town for two days, and it’s very hard to eat out without blowing the program. I managed to do pretty well, though, and have plenty of points left to celebrate Valentine’s Day dinner at Alessandro’s ;-}

We got out to Newport Friday night around 10 p.m. The drive was fine, mostly dry, until we got over to Newport. When we woke up Saturday morning, though, there was some sunshine, and even though it clouded up over the course of the day, it never rained. Unfortunately, we hit the high tide wrong, so instead of going to the beach that day, we went out to the Yaquina Bay Lighthouse. We wandered through the museum, and climbed to the top of the tower. The ocean is rocky right around Yaquina Head, and with the tide in, very dramatic. That evening we played games, just having the opportunity to enjoy each others’ company without all the pressures of being home and having to deal with ‘stuff’.

Sunday we checked out and headed up the coast. We stopped for a brief stroll at Agate Beach, which, contrary to its name, had no agates that I could find, although there were some very good whole shells. Then we continued on to Lincoln City, where we stopped to visit with my Aunt Pat and Uncle Dick (and Carleton the Westie). We went to lunch at Mo’s down in Taft, which is the original restaurant – I hadn’t been there in many, many years. It was nice to catch up on family news, and see the addition on the house – they have a great view of the ocean from the new room upstairs, and it’s very cozy. Traffic home on Highways 18 and 99W was surprisingly sparse, so it only took a little more than 2 hours.

Robin enjoyed his stay with Sharon, Gary, and Jasmine. Since he wasn’t able to go to the beach, at least he got to go somewhere where they really understand him! April and Jeremy were right at the door waiting when we got home, and pretended they didn’t care that we were gone. Except that April is following Brian everywhere this evening . . .

Thank you to everyone who has made a donation or signed up so far for the Making Strides Against Breast Cancer walk – your support for the team and me personally is greatly appreciated. More importantly, I appreciate all the moral support that everyone has been so generous with in the last few months, and I depend on it to help me get through the next surgery and recovery period. Hopefully, there will be leftover support for those who have to deal with my newly menopausal self.

Well, now that I’m home, I have to deal with ‘stuff’, like getting to bed at a reasonable hour and making sure I have enough coffee for tomorrow. All the best to you all,

Julie

02
Feb
08

February 2, 2008

Happy Groundhog Day!

We’re not the least surprised here in Portland to know that P. Phil saw his shadow – the clouds, wind, and rain definitely look as if they’re here to stay. It’s actually rather comforting weather for me, as it reminds me of all the road trips that we took when I was a child – driving in the rain in Oregon seems natural because we did it so often. My one regret about the cold and rain is that I haven’t been able to drive with my convertible top down since before my surgery last year.

Next weekend we’re traveling to Newport for a couple nights, because I really want to get out of the house – this will be my first excursion away from Portland since early September. Between surgery, chemo, work, and facing another surgery, if we don’t go now, it’ll probably be late April or more likely May before we’re able to get away. Robin isn’t able to come, although he would love it, since he loves the beach; but he gets to stay with his friend Jasmine, so he may not even notice we’re gone.

Some of my coworkers have done a really wonderful thing – the American Cancer Society holds a walk every year to raise money for breast cancer research. Jenny, along with Lynnette and Shi-Yi, decided to set up a team in my name, called “Supporting Julie”. It is impossible to describe in words how honored and touched I feel. The Making Strides Against Breast Cancer walk is on May 10, 2008, starting at 9:00 a.m., but the starting location is not determined yet. For anyone who is interested in joining the team to walk with us, or in making a donation in our team’s name, follow this link: SupportingJulie. If you want more information about Making Strides Against Breast Cancer, here is a link to the main page: Making Strides Against Breast Cancer. I will be walking in memory of mom, and in honor of my aunt, two of my cousins, and a friend.

My surgery date has now been confirmed – it*is* going to be February 29th, at 7:30 a.m. That means that I have to be at the hospital at 5:30 a.m. – since I’m going to be asleep most of the day, it won’t matter much to me, but poor Brian! The nice thing for me is that my previous surgery was scheduled for 2:00 p.m., and I couldn’t eat or drink after midnight – for this surgery, the cut-off is still midnight, so I don’t have to suffer through all those hours of thirst and hunger. The surgery(s) are expected to take up to 5 hours between them, and then, of course, it’s usually an hour or more in recovery before they take you up to a room. So for me, the day will be pretty short; Brian’s day is going to be pretty long.

Tonight we’re going out to dinner with some friends, so I have the challenge of being able to find something to eat that won’t totally gobble up all my points for the week. I’ve had a light breakfast and lunch, so I should be able to splurge a little bit – it’s the point where I have to make the responsible decision of ordering something sensible rather than a burger and fries; or fish and chips; or the creamy, cheesy, most fat-laden dish on the menu that is the hard part. Especially in this weather, hot food rather than a salad seems necessary, so I have to try to come up with something grilled or baked. We’re going to the Cornelius Pass Roadhouse (a McMenamin’s pub), so that seems pretty unlikely. Also, I will need to restrain myself from my usual pint of Ruby mixed with hard cider that goes down so well. Or maybe I’ll just have that and skip the meal altogether ;-} Well, not really, but having one might make the idea of a salad much more palatable. . . My weigh-in this week was disappointing, but at least my weight went down, even if only by a fraction of a pound. I don’t want to blow it now, when surely, by following the plan religiously, sooner or later it will start showing. I’ve tried very hard to account for everything I eat, and make overestimates of how much I take in situations where I can’t measure it exactly. I try to comfort myself with the thought that working out in physical therapy is building muscle tissue, which weighs more than the fat. I try not to use up my Activity points, although I definitely did this week, between work’s Winter Party and the beading group night.

My next beading group night is the night before my surgery – I definitely plan on going, because it is now a tradition that I go to some sort of crafting group or class the night before surgery. Last time, it was a quilting class. Unfortunately, I wasn’t able to continue the class due to recovery taking longer than I expected. So I planned on taking the class this spring when it was offered again. Guess what? The first session of the class is the week after I have my latest surgery. If I were paranoid, I’d say it was a conspiracy to stop me from taking the class – Brian, did you call the teacher and bribe her into moving it?

I’ve been reading a lot this winter. Mostly I’ve been in the mood for light stuff, so I’ve been re-reading the Discworld series by Terry Pratchett. I also have read a lot of The Sandman by Neil Gaiman – not that it is light reading at all, but it is very compelling, and an incredible graphic novel series (comic books for adults). Even with getting back to work, I’ve been reading a lot – historically my average is about 13 books per month, and I read 21 books in January.

BTW, I haven’t noticed any hair growing yet. They say it takes 4 – 6 weeks for hair growth to restart after chemo, and it has now been 5 weeks. I still have the usual crop of stubble, but it’s not getting any longer, nor is it filling in areas where there hasn’t been any hair. I keep meaning to get some pictures of me bald, and we just haven’t done it. Maybe today.

Julie




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