Archive for September, 2007

29
Sep
07

September 29th, 2007

Well, we have great news! The doctor visited Julie this morning, was very pleased with her condition, and told her she could stay in the hospital or go home as she wished. And so, Julie is home!

I’m amazed at how alert she is (I figured she’d be sleeping most of the time), how little pain she is in, and how good her color is.

She’s having to deal with restricted movements, as she’s not to lift more than ten pounds, raise her hands above her shoulders, or do anything that involves a lot of physical motion. She can’t dress by herself because she can’t move enough to get her arms in her shirtsleeves. She was going to make a snack for herself, but couldn’t get the cereal off the top shelf. She discovered last night that sleeping in a flat bed is out of the question for a while. Good thing she bought that recliner last weekend.

Still, she feels much better than either of us expected.

We’re continuing to enjoy the support of our friends and loved ones. Shi-Yi and husband Steven were visiting her when I arrived at the hospital in the morning. Shortly after we got home, our good friend Sharon from across the street came by for a visit. Julie’s also been on the phone with family members.

So you see, we’re doing great, and everyone is glad to have Julie home.

-Brian

Bertie

Bertie – a new
member of the
family

Advertisements
29
Sep
07

September 28th, 2007

With Julie in the hospital for her surgery, I’ll be handling the posting duties for a day or two.

We arrived at the hospital at 10:30 this morning per instructions to prepare for her 2PM surgery. Preparations included taking safety precautions (getting ID bracelets, several verifications of who she was and why she was here, marking the surgery sites, etc.) taking stock of her vital signs, and replacing her wardrobe with the latest in high fashion hospital gowns and support hose.

A gurney ride down to nuclear medicine was required so that they could inject a radiological tracer into each side. These tracers would be used later in the surgery to identify the “sentinel” lymph nodes on each side. These lymph nodes are the first ones to collect anything being carried out of the breast tissue, and therefore can be used to determine if the cancer had spread to other parts of the body. As Julie has said, while the loss of body parts is very unfortunate the real question in our minds was whether the cancer had spread, and the sentinel nodes would help answer that.

We were visited at various times by both of the two surgeons, Seth (a “doctor in training” that would be observing the surgery), the anesthesiologist, and of course the usual variety of nurses and staff. The visit from Seth really brought a point home to me, though. There was no practical reason for him to stop by. He didn’t ask any questions about her health or inform her of anything important she should know. Instead, the reason for his visit was to help put a human face on what could otherwise be a pretty intimidating situation. The visit from the surgeon served the same purpose, and part of the purpose of the anesthesiologist’s visit was also to let her meet the real, caring person that would be attending her. These visits weren’t about physical health, they were about emotional comfort, and I applaud the hospital for making that an important part of its culture.

Part way through the morning we learned that the surgery had been delayed until 3PM due to a prior surgery taking longer than expected. This increased the amount of “wait around” time on our hands — an inconvenience that was greatly eased by a visit from our long-time friend Shi-Yi. It would have never occurred to me that you can visit a patient before they go into surgery, but it did to Shi-Yi and we were certainly glad to have her there. Thank you, Shi-Yi.

Contrary to my expectations, they don’t give the patient any serious anesthesia until after the patient is in the operating room. This is another safety protocol. When the patient is actually on the operating table and the surgical staff is present, they check once more with the patient about who they are and why they’re there. I imagine it would be really difficult to explain to someone why a mastectomy was performed when an appendectomy was expected. I joke about it, but I appreciate the extra care the facility makes to be sure everything goes as it should.

Julie finally headed off to the O.R. about 3:40. The surgery was expect to last about two and a half hours, and at 6:15 I was meeting with the surgeon to discuss the results. She told me that the surgery had gone very well, but the really good news was that the sentinel nodes showed no indication of cancer. We’ll get a final pathology report around mid-week next week, but everything is looking very good and we’re very pleased.

Julie spent about 90 minutes in the recovery room before they moved her into a hospital room. I spent about an hour and a half with her in her room. The staff seemed very attentive. She was having some pain, and they were quick to give her something for it. She was drifting off to sleep when I left, but I still found it hard to leave. If I hadn’t had animals to attend to at home, I might have stayed the night.

Thank you all for your good wishes and thoughts. One thing we’ve really learned out of this is how truly lucky we are to have so many people who care. It means more to us than we can possibly express.

-Brian

28
Sep
07

September 27, 2007

Tonight we’re packing. I don’t really have to take much besides my toiletries kit and a hard case for my glasses. I keep thinking about a book or my knitting, then reminding myself that most of my waiting will be in a hospital gown and on an i.v. I do need to remember to take my rings off, and leave them at home – I hate doing that.

Brian’s going to bring a book, his mp3 player, and I think there was something else he mentioned. He’s going to be waiting a long time – fortunately he’s pretty well self-entertaining ;-}

As I was talking to a friend the other day, she asked me if I was getting worried about the surgery yet. Even as I was answering, my feelings about this whole thing clarified a little for me – the surgery doesn’t scare me – I’ve had major surgery before, and while it’s not something I’d put on my list of experiences I must have before I die, well, it’s not anything that in and of itself worries me. While I’m sorry that I have to lose parts of me (“amputee” is not quite the right word, I don’t think – the Black Knight is an amputee!), the fact that we can recreate those parts so they’re nearly as good or maybe even slightly better (at least more perky. . .) makes the loss less bothersome – I definitely am bothered by this, but not as much as I would have expected.

Having cancer scares me. More accurately, the idea that it may have spread scares the bejeezus out of me. But for the most part, I’m trying not to pre-worry the case. If it has spread, I’ll have plenty of time to worry about it after I find that out, so no point in making myself feel bad now – we’ll deal with it as necessary once we know for sure. And especially if it hasn’t spread – then I’d have made myself sick with worry over nothing!

Our good friends and neighbors, Sharon and Gary, will be taking Robin over to their place for some portion of the time we’re gone. He will probably have a great time playing with Jasmine.

In preparation for surgery, and for not being able to shower or wash/blowdry my hair by myself for up to two weeks, I got my hair cut very short. I also decided that I wanted to do something a little different, so I colored it. I’m uploading pictures so you can see the difference.

Before After

Brian will be updating the blog tomorrow or Saturday (depending on how long he’s at the hospital tomorrow evening, and when they’re sending me home – one or two nights’ stay only).

Thank you all again for caring, and letting me know you care. It means so much to me, and helps me feel strong and confident to have you all behind me.

Love, Julie

25
Sep
07

September 25, 2007

Today was pretty hectic – I had to go to the pre-admit clinic and get paperwork filled out and consult with a nurse. As it turns out, *she* is the one who determines what labwork I needed, and although she didn’t take the blood, she did take me over to the lab right after we finished the paperwork, so at least I don’t have to go in for yet another appointment. Whew!

She also told me that I need to bring my own toiletries for my hospital stay – even OHSU, the teaching hospital, provided me with a toothbrush and toothpaste when I had surgery there. I guess the need to try to be profitable is infringing on St. Vincent’s ability to provide such personal care items. I have to say, though, that in my experience so far, something like making me bring my own comb and brush is far outweighed by the quality of the people – everyone I have dealt with so far has been compassionate and gone out of their way to help me with all sorts of things. And if they don’t know an answer, they find someone who does (OK, it was “eventually” on the lab work question, but it did get answered!).

The nurse also described my surgery day in quite a bit of detail. I’ll come in to the Surgical Waiting Area, and they’ll give me my hospital bracelet and a tracking bracelet (I gather it’s sort of like the house-arrest type of tracker – guess they take their check-in process pretty seriously. “You can check out any time you like, but you can never leave”). Actually, I think they use it to scan in that I’ve been through each process, so that if I’m getting loopy from the drugs they don’t have to depend on me to say “yeah, I’ve had the lymph node dye injected, but they haven’t drawn the incision lines yet”. I was thinking about drawing some little smiley faces to greet the surgeons, but then realized that I would not be very happy with permanent happy faces as well as implants. . .

I also went to buy some pajamas and shirts that have button fronts. I am not going to be able to raise my arms over my head for a couple weeks, and as I was looking in my closet, I realized that all my pajamas and nearly all of my shirts and blouses are pullovers. Fred Meyers didn’t have any women’s flannel pajamas (well, they had half of women’s flannel pajamas – there were tons of flannel bottoms, but every single pajama top was a pullover-style), so I bought a couple men’s pairs. I also got some nice men’s flannel shirts, because there weren’t any for women. Go figure!

I’ve got an early day tomorrow, going to my last pre-surgery physical therapy appointment. It has really made a noticeable difference in my fitness level (not that there’s not still a long way to go to actually be fit, but hey – it’s better than it was!). Tony and his whole team are awesome – they know how to make something I dread (exercise!) fun. Thank you, guys!

Julie

24
Sep
07

September 24, 2007

The countdown has begun!

We’re mostly prepared here at home – we’ve got the cable ordered; the recliner is to be delivered on Wednesday; Netflix has sent the first batch of movies; the freezer is well-stocked; and the neighbor will walk Robin while we’re at the hospital all day Friday.

I thought I pretty much had a full four days to prepare at work, but I keep getting new appointments added. Today, I got a call from “pre-admit”, and have to go in tomorrow. This isn’t the same thing as “pre-registration” (sounds sort of like college, doesn’t it? Only this is more like the school of hard knocks. . .) – I did that over the phone. So am I being registered, or admitted? Or both? And just exactly what is the difference? Nobody will admit to knowing.

I have asked several people (doctors, nurses, administratives) if I have to have any pre-surgery blood tests or anything, and everyone keeps saying: “So-and-so” will let me know. But then I’d ask so-and-so, and they’d refer me on to the next person. But apparently part of pre-admit is that they’re going to tell me what tests I need to have. Then I have to schedule another appointment to go have the tests. I’m sure there’s some universe where this all makes sense, but I haven’t been there yet!

On the other hand, the surgeons seem to have their act(s) together – I’m confident that I’m in good hands, and that the best people are on the job.

I wasn’t prepared for how kind, generous, and caring everyone has been since I started telling people I have cancer – it’s one thing to know intellectually that your family, workmates, and friends (overlapping categories!) are kind, generous, caring people, but it is very amazing to be on the receiving end of that outflow, and a little humbling, too. I hope when it is my turn to be the supportive one that I can live up to the examples of the many people who have offered me their support and are going well above and beyond generic kindness. Even people I have just met, and who are also cancer patients, are incredibly giving of their time and care – it’s nearly impossible not to hug someone who has just offered to show you where you go to get fitted for post-surgery garments, when she has had surgery not too long ago herself. And so many people are reaching out to Brian, also – I think a lot of times the caregiver gets overlooked in the desire to help the patient, but more than one friend has offered to wait with him while I’m in surgery, and to come sit with me if he needs to go to a client’s site, or at night so he can get some sleep.

To all you wonderful people, thank you!

Julie

20
Sep
07

September 20, 2007

I realized tonight that I had forgotten to confirm previously that my surgery date is officially set for September 28 – it’s at 2:00 p.m. at Providence St. Vincent’s Medical Center. I have to be there by 10:30 in the morning – not too bad, unlike some poor souls who have early surgeries and have to be there by 5 a.m. I’d never make it!

We met with the plastic surgeon today, and after discussing the various options, I made my choice. He confirmed that my concerns about taking abdominal muscle (along with tissue and skin) to do the reconstruction was likely to weaken the remaining muscle enough that it would probably exacerbate my occasional back problems, and he also said that some women tend to have problems even getting out of chairs afterwards. As well, once you go that route, you are stuck with it, good or bad. So implants it is!

I caught myself being rather vain about a couple of things as we talked to him. I know, I know, how can someone who doesn’t wear make-up, who doesn’t dye her hair, who wears jeans and t-shirts to everything but weddings and funerals, and who blow-dries her hair by putting the top down on her convertible, be vain? Well, I insisted that I wanted to be the same size as I am now – I mean, logically, I’d probably be better off having at least some reduction to prevent upper back problems as I age, but no, that just isn’t even a possibility. Why? Maybe just so that I can avoid the inevitable pear shape a little while longer; or because I’m used to the weight and dimensions; or because I’d miss being embarrassed when I spill food there instead of on my lap while eating (I think Brian, who has to deal with the stains in the laundry, may have taken the doctor aside and asked how much it would be to just forget about the reconstruction – jeans don’t show stains as well . . .).

The second instance is just as silly – I quizzed him mercilessly about scars. Where, how many, will they fade, will they stretch, etc., etc., etc. I mean, come on! Even if he does the most fabulous job of reconstruction, I’m not planning on posing for Playboy – Brian and various doctors are pretty much the only ones who are going to see the finished product, so why should I care?

I’m not even really worried about losing my hair – I think it might be kind of fun to have my skull painted or henna tatoos put on it for the duration. So what’s the big deal about scars? Vanity, pure and simple. I guess everyone has their little vain streak – frankly, I’d have been happy never to have discovered this one ;-}

I’m debating participating in the “Race for the Cure” this weekend, but even for the walk (rather than the run) I would have to be downtown around 8 a.m. on Sunday. So I think I’ll do the “Sleep In for the Cure” – that is definitely within my usual weekend morning routine. Thanks to those who are listing me on their “In Celebration” lists!

Julie

14
Sep
07

September 13, 2007

There’s always more to learn, but I think we pretty much know what’s necessary after our meeting with the surgeon this afternoon.

What we discussed with her today basically solidified my decision – I had hoped that she would have something that would make the choice of unilateral or bilateral mastectomy more clear, and she definitely did.

The mass on the right is something called “papillomatosis”. For those of you who aren’t familiar with the term papilloma, that is the Latin word for “wart”. Remember the huge wart on the bottom of my foot that I had surgically removed last year, and it grew back two months later? Well, about the same time that I received the cancer diagnosis in July, I noticed that it was getting smaller, and now it’s completely gone. Guess we know what happened to it . . .

Seriously, it is either a type of wart, or what they call “ductal hyperplasia”, which means that there is an unusual proliferation of cells within a duct in the breast. There are different types, some of which may be cancerous or pre-cancerous, but most are benign. However, the surgeon told me that while it isn’t known if papillomatosis can become cancer, it is not unusual to find the two in conjunction. This can mean that there’s something weird going on with the cells in an area, and some of it develops into the papillomas or some type of ductal hyperplasia, and some of it develops into cancer; or it could mean that there is some more sinister connection between the two. Upon doing some research on-line, the general consensus seems to be summed up best in the following quote:

“The outcome is expected to be excellent for patients with solitary tumors. Patients with multiple papillomas or who develop them at an early age may have an increased risk of developing cancer, particularly if they have a family history of cancer or there are abnormal cells in the biopsy.”

http://www.nlm.nih.gov/medlineplus/ency/article/001238.htm

(BTW, if you decide to google “papillomatosis”, be very, *very* careful with what links you select. For some reason, it appears that nasty hackers think anyone who is looking into that term is fair game to hijack their system or plant spyware or a virus – I nearly got nailed on a link that looked like it was going to a legitimate website, but turned out to be an attempt to get me to download a worm. Google ductal hyperplasia or papilloma, instead.)

So my decision is to follow my gut feel, which was tending towards the bilateral mastectomy. While it is currently a solitary tumor, between the cancer on the left and my (comparative) youth and family history, I’m a cancer just waiting to happen if I leave it (which definitely is worse than being a wart waiting to happen – been there, done that, bought the crutches ;-} ).

Next on the hit parade is my initial meeting with the plastic surgeon – it is currently scheduled for the 20th, although the scheduler was going to put my name down on a cancellation list. His scheduler will talk to my surgeon’s scheduler, and we’ll get the actual date of the surgery set – we’re currently targeting 9/28, although I suppose there is a very small chance that it could be as early as the 21st if the plastic surgeon sees me before the 20th.

In the mean time, I am taking a beading class to create a “Day of the Dead” (cue Twilight Zone music!) necklace. I plan to memorialize Mom – unfortunately, I don’t have a lock of her hair, although there is one floating around out there somewhere, but I’ve got a few things that I think I’ll be able to incorporate. I’ll post a photo of it when I finish.

Cheers!

Julie




Post archive

September 2007
S M T W T F S
« Aug   Oct »
 1
2345678
9101112131415
16171819202122
23242526272829
30  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 33 other followers