Put this gown on. And don't breathe...

I did finally hear from the Radiology department at the Cancer Center, about an hour later. My appointment for a CT scan is next Thursday. And, a little less than two weeks later, I'll be meeting with Dr. Stern to go over the results. The timing is very good.

The clerk told me this will be a barium scan, which means I'll have to drink the barium solution, then wait while it's being absorbed into my body. I won't be able to eat anything four hours beforehand. And the whole thing will take about 2 hours.

So, I made notes and will review them before I go to Berkeley.

I've never had a CT scan or anything like that which requires me to drink a solution. The last one, the PET CT scan, required an injection, and then we waited for an hour while I played "Angry Birds" on my iPhone. So this will be quite unusual.

Wikipedia says about the barium sulfate solution:

"Barium sulfate suspensions are provided by a radiologist in advance of a CT scan to allow for better computer tomography of the gastrointestinal tract. The patient is instructed to take nothing by mouth, which means to abstain from eating and drinking (fasting), with the exception of drinking the barium sulfate suspension.

"The amount of time for this fast may vary, depending on the instructions given by the imaging facility and the area of the body to be scanned, but generally lasts for several hours prior to the scan. The patient generally skips one meal, along with abstaining from all liquids, clear or otherwise, during this time. Consumption of the barium sulfate suspension begins 90 minutes to two hours prior to the CT scan, as instructed in the patient education provided. Consumption is paced, beginning two hours before the scan is to occur, with levels marked on the provided container indicating how much is to be consumed between each of the two hours prior to the test. A small portion of the suspension is reserved for the minutes just before the test, to ensure that as much of the gastrointestinal tract as possible is coated. After the scan is complete, the patient is encouraged to eat and drink normally, with special attention to plenty of fluids. The barium sulfate is excreted through defecation. Constipation is a possible side effect."

How pleasant. Time to put the gown back on!

Waiting for Godot

It's been three-and-a-half months since my surgery to eradicate cancer in the uterus. The plan was to have a few more tests in June, and see where I am.

I was told to go in early June to get my blood test, the same test that showed a negative result back in February. That was on June 1st, because, when it comes to this stuff, I don't fool around.

However, three weeks later, I'm still waiting to hear whether I have the go-ahead to do the CT scan. I called Dr. Stern's office today, and Shirley told me she had faxed over the insurance information to the scan place a floor below her. I called and they said they never got it, but gave me assurances that they would call me after they talked with Shirley.

That was 15 minutes ago, and I'm still waiting.

I have other appointments to make, phone calls to make, but those will have to wait because this appointment is and will be more important than having my home thermostat fixed, or figuring out when my next movie date will be.

In the meantime, my post-surgical status is excellent. There is only a little pain, and that happens only when I press on my stomach. Perhaps the only good thing that has come of that pain is that I stopped wearing a fanny pack. A stylish upgrade.

In the meantime, my phone goes with me everywhere. I have to get these tests in before I see Dr. Stern in early July, so that he can review them and tell me the results. If the tests come back negative from the blood test and the CT scan, I can breathe a sigh of relief with the knowledge that I am cancer-free.

It Itches

I am exactly 8 weeks and 2 days from my operation. In the first few days after I returned from the hospital (after spending 5 days therein), I couldn't sleep longer than 5 minutes at a time. I couldn't much focus on anything because of the vicodin and the pain. I couldn't drive anywhere. I was supposed to walk a little every hour (but we all know how that goes...). Today, I drive everywhere I want to go. I drink wine if I want to, because I'm not on painkillers, and haven't been for over a month now. But I have this 7.5-inch zipper from my navel down to where the sun don't shine. It isn't painful to touch any more, but it sure is red. And the vampire bite marks on either side of the surgical line are still there. It's a reminder of where I've come from. Not constant, but near enough. I have a slight bit of pain, right around the belt line. I pretty much don't pay any attention to it. It's not like even two weeks ago, when I knew the pain was there all the time. I have to be reminded now that I have any at all. I consider myself cured. What do I face now? I will walk unassisted into Lab Corp on June 1st and have my blood drawn for the first of two tests. I will then call the oncologist's office, and Shirley will apply for a PET CT scan one more time. I have to say I'm a little nervous about the latter, not because of the procedure, which is a piece o' cake, but because of what it might show. If it shows I'm free and clear of cancer, I'm home free. Well, pretty much, although the gynecologist will see me annually for five years. If not... well, I don't want to think about that. Oh, one further thing: the incision scar itches. It's the damnedest thing.

Searching for a Nutritious Diet

I have just finished my eighth week of recovery from the operation. If you don't know, I had surgery to remove cancer in my uterus on March 9, 2012. I am still recovering from that rather extensive surgery.

A medical student came to my house a few weeks ago to visit and interview me. This had nothing to do with the cancer or the surgery. In fact, I had seen her before several times at Lifelong Medical workshops on diabetes and stroke risk. She was required by her school, as part of her training, to do some in-home visits. After all, Dr. Miller explained to me as we were setting this up: you can learn a lot about a person by their home environment. Do they have a support system? What is their greatest worry or challenge?

My answer to that last question was: "I am recovering from cancer surgery -- my second cancer -- but that's not my worry. Diabetes kicks my butt daily." And so we talked about that. And that is the absolute truth.

I was talking to a friend the other day about what I would do differently 15, 20 years ago if I knew what I know now about how diabetes would affect me. Nothing, I replied. I don't think I could change a thing.

But that's not important, really. What's important is, what am I doing now? I'm taking my blood sugar levels every morning before breakfast, which tells m absolutely what path, what trend I'm on. I'm conscious every time I put something in my mouth, and now I write it down (in my new app in my phone). But I'm going one step further.

I'm ordering food from a local nutritionist. Yes, I've tried NutriSystem, and when the food was lousy and cardboard-like, I tried BistroMD. A little more upscale cardboard but still not tasty. And so I couldn't stick with it.

My nutritionist, Sandy Der, is making meals according to menus she puts together with my guidance. She will deliver the frozen goods to my door -- 20 of them -- and I'll eat them over the month. Then, next month we'll do the same thing. (Sandy has worked for year's with Oakland Women's Cancer Resource Center, teaching nutrition and helping people with cooking ideas.)

This month's menu items include:

Fish of the Day with sun dried tomato pesto. Side of wheat berry pilaf and broccoli.

Grilled lime and garlic marinated chicken. Side of cut corn and roasted sweet potatoes.

Beef stew with carrots. Side of egg noodles and sugar snap peas.

Hoisin glazed roast chicken breast with stir fried green beans and brown jasmine rice.

Turkey bolognese sauce. Side of whole wheat spaghetti and broccolini.

The whole idea is not to diet. The idea is to make better choices. I start May 12th. Wish me luck.

Reviewing the D Buddy App

I've been using the D Buddy app for two days now. I like it, although I find some of it difficult.

It's very convenient. I was able to enter what I was eating right at the ballpark last night. I couldn't exactly find "lemonade" like they were selling at the ballpark, so I estimated, extrapolating from a store-bought version of lemonade.

This morning I ate some Kellogg's Frosted Mini Wheats, Bite-Size. I was able to find Kellogg's Frosted Mini Wheats in their database, but not the bite-size kind. Still, I was able to guess.

What I don't like about adding the food is that I can't, say, eat half a banana. So I have to enter an extremely small banana. And I can't add a quarter cup of milk. I can only add a cup (which is a lot of milk). But, when I've entered everything, it tells me how many grams of carbs I've consumed (103.4g this morning), how many are remaining since I'm diabetic, which is what the "D" stands for (171.6g), 540.1 calories, 12.3g fiber, 31.3g sugar, and 16.7g protein.

I'm not sure what all the numbers mean. How many grams of sugar should I limit myself to? Calories I understand more about -- and I'm trying to limit myself to 2,000 a day.

This app is already helping. Nutritionists have always told me to write my food down. You're more aware of what you're eating, what you should be avoiding. If you don't want to write it down, don't eat it! So now that I have to do that electronically -- it's much more fun this way -- I really am paying attention.

And I also have a calendar method of marking my weight and glucose level, as long as I remember to enter the data.

There Must Be an App for That...

I received a call the other day from my GP, Dr. Laura Miller of Lifelong, telling me that Caitlin, someone who used to intern with Lifelong, wanted to do an in-house visit with me. Caitlin was with Lifelong for a couple of years as sort of a health assistant. She set up the workshops, like diabetes and stroke, which I would attend. She was very competent, had a good sense of humor, was engaging, and seemed to have a lot of knowledge about general health matters. Caitlin is now in medical school at USF. She told me today that medical school is now emphasizing much more the patient end of health care. So, she shadows Dr. Miller a couple of times a month, and is now doing these in-house visits. She asked me after we sat down, "What would you like to talk about? Your cancer surgery, your diabetes, your support system?" I started out by telling her about the uterine cancer, how it was diagnosed, about the surgery at Alta Bates. When she asked me the question at the end, "What would you change?" I replied that there's nothing about the Alta Bates hospital care, the care I received at the hands of my oncologist or gynecologist, or even Dr. Miller. They are very caring, extremely competent doctors, with great caregivers in each of their practices. (That last statement doesn't apply to my GP; Lifelong doesn't have the resources.) For instance, Dr. Poddatoori has a scheduling person, a surgery scheduling person, someone who helps me in the examining room, etc. Dr. Stern, the oncologist, has his own assistant physician, Dr. Stephanie Summers, a scheduling person, an insurance person, ad infinitum, it seemed. I told Caitlin that I have had two cancers, I have had two surgeries, and it's gone. Twice. But diabetes beats my butt every day. I don't have a hold on diabetes, and haven't for a good, what, 20 years? I have all the information, but I can't seem to make the right choices. It doesn't help that I feel I'm addicted to sugar, and sugar snacks are the easy way to go. As are potatoes and bread. I wished -- well, almost -- I was back in the hospital. When the dietitian came by, he gave me a menu from which to choose my next three meals. After I kept checking everything -- I was hungry after having not eaten in three days! -- so he stopped me and pointed out that I was allowed only so many glucose points because I'm diabetic. Once I learned that, I could choose more optimally, and end up with a glucose-balanced meal. Ruth suggested that, just like there's a Weight Watcher's app on her cell phone, there's probably one or two good apps for diabetics. Sure enough, I just found one and bought it: Diabetics Buddy (shortened version is "D Buddy.") I have yet to use it. I hope I can figure it out and use it to my advantage.

Checking In with the GYN: My Go-To Doc

I kept my appointment today with Dr. Vineela Poddatoori, who checked on my incision today. Everything looks good. She told me the line would smooth out over time, fade, and the puncture marks on each side of that line would disappear, eventually.

She noted that I was still swollen a bit around the lower part of the incision, and that that's normal. She said it would probably disappear within the next two to three weeks.

She also gave me a lecture. It somehow came out in the conversation -- I think when she asked if I had been lifting things -- that I had been carrying the recycle and garbage out. Well, of course, I said. Who else would do it? She went on for a good 10 minutes about how I could easily hernia. And gave me examples, like a cousin who had a baby but then everything ruptured, and now, well, her intestines won't stay inside where they should be. Horrible stuff. She said it's harder to treat a hernia than my initial surgery, as the hernia never seems to completely heal. She made me promise to be more careful over the next couple of weeks until I'm completely healed, and not lift.

We noted that she looked like she was well along the pregnancy path, and she acknowledged that her due date is in August. I made a note to myself that I won't be able to see her until maybe Christmas, if necessary. Still, in the same breath, she suggested I call her if I had any concerns.

An important note: She said either she or Dr. Stern should be my check-off against recurring cancer. If Dr. Stern sees the June tests and pronounces me good, signs off on me, then I should come back to her. She said annual visits to one of them is important during the next five years.

Which made me think: where was my go-to doctor during the first five years after my colon surgery (also cancer) back in 2002? I didn't have one. I kept wondering whether my GP doc would know what to look for. I was just lucky: nothing recurred.

But now I have a back-up plan. I'm very happy about that.

One Month Update

It's been exactly one month since my surgery, so I thought I'd check in.

Pain. Yes, there is still pain. Pain when I walk, pain when I sleep, pain when I move. If I sit very still, I don't feel it, and can actually forget about it. Until I stand up. I'm using Aleve right now, every 6 hours. No Vicodin. The pain is certainly less than even a week ago. But according to doctors, I probably have another month to go before I feel almost normal again.

My son's grandmother wrote me to tell me that it will take me a year to get over this. "I can say confidently that it will take you longer than you think it will." She lost her uterus some years ago, and "I never missed it." Well, I know the last part is true.

As to what the area feels like, it's still a swollen mass right behind the suture line, right where the uterus used to be, and a little behind every inch of the vertical line itself. The "line" of the incision is much smoother than it has been, and doesn't hurt. It's the area where the uterus was that hurts, close to my navel, where the incision was started.

Fatigue. I still get tired quickly. I can go out for a few hours now, but when I come back I'm pretty tired. But every day brings new stamina.

Exercise. I walk quite a bit, I think, most days, but not on a flat line. I don't go for walks, normally. I need to build that into my schedule, a little bit more each day.

Diet. It's Passover now, so I'm not eating bread, which is a good thing. More salads, fresh fruit. I slipped back to some of my old habits because, hey, when you're hungry, you reach for whatever's convenient. Chips, ice cream. I try not to keep such things in the house normally, but I have slipped in the past two weeks. I am still holding at 10 pounds lost since the surgery, and I hope to improve upon that in the next few weeks.

All in all, things are going well. I have had a few set-backs in recovery (notably, nausea, bleeding from the clamps being removed, recovery from getting off Vicodin), but each of those only lasted a few days. I'm on a roll now.

Passover Challenges

I was finally able to find the time and patience to take my new glucose meter out of the package, plug in the key code wand, and get it going. It's not like the old days, when this used to be simple.

This morning, my blood sugar level was at 113, the best it's been since, well, I don't remember when. Right before the surgery, I was averaging in the 130's, which I thought was pretty bad, as before that spell, I was averaging in the mid-120's. I'm thrilled. That means that my eating regime is paying off.

Thanks to a dear friend, we have a first-night Passover seder to attend tonight. I'm not sure how long I'll last. Seders are usually looong, somewhere between 3 - 5 hours. I still get tired easily. And walking up the long, steep driveway to her house will take a lot out of me.

But I'm leaving Egypt tonight. Exodus.

The Bills Are In

Most of the bills from the tests leading up to the hysterectomy are in, and the operating bills themselves. I don't think this is the end, however. But I think this is most of it.

The total? A whopping $128,000.


COST OF OPERATION MARCH 2012

Doctors:
Oncologist OP Visit, New PT, LVL 5 $453
Gynecologist OV New PT Lev 3 $329

Tests:
MRI Pelvis $2,770
PET CT Imaging Skull-Thigh $5,900
Radiology, Supplies, Injection

Hospital:
Alta Bates Outpatient (biopsy) $26,918
Alta Bates Outpatient $289
Alta Bates (hysterectomy) Inpatient, $91,548
Ancillary

TOTAL as of 4/5/12 $128,207

I am still getting co-pay demands, and I haven't seen any from Alta Bates, although I'm sure that's next. My share will be probably around 1% of the total cost. How does someone without good health insurance, without ANY health insurance DO this???!

I feel very grateful.