I'm Still Here

I haven't blogged for a while, so here is a little update.

I'm still here. The Tamoxifen got replaced with Arimidex for six months, but the Arimidex still didn't make the cancer markers come down. It just caused them to plateau. So, I got switched to Aromasin, and the markers were actually down a bit at the beginning of August. Hopefully, the Aromasin will continue to bring those numbers down.

It has been about six months since my last CT and bone scans, so I am scheduled for new ones right after Labor Day. I'm still getting infusions of Zometa monthly. Sometimes I have side effects from it and sometimes I don't.

The Lupron shots, along with the Aromasin, have seriously cut back on the number of migraines I get. I've gone from 2-3 a week to 2-3 a month. That has been a blessing.

The boys and I have had a good summer together: going to the beach, relaxing and kicking back, and generally keeping our days low stress. Spiff will go back to "building school" again this year, while Entropy Boy will be homeschooled again. I'm going to miss having both of them home together.

That is the latest. I am reminded daily that I have cancer, but my goal each day is to do as much as I can and not let aches/pains/etc. stop me from living my life. I can't let little things give me a bad day, because then I might *never* get a good day. So, I have to make each day as good as it can be.

I Think I Could Eat My Weight in Curry

Well, it's a week later and I'm doing well. The migraines are slowing down and life is returning to normal.

We had Indian food last night and I just had some of the leftovers as a snack. I grew up eating midwestern food without a lot of spice to it, so I'm not quite sure why Indian food has become a such comfort food for me, but it has. I love it and so does Joe. Date night inevitably will find us at an Indian restaurant.

Here are recipes for some of our favorites:
Indian Butter Chicken (Chicken Makhani)
Three Bean Dal
Potatoes and Cabbage, Indian Style

Now you can make them at home and spice up your life!

Well, It Was Either a Reaction or a Migraine

Either way, it stank. About 4:30 Wednesday morning I woke up with *something* happening--either a migraine or a reaction to the meds. It was hard to tell which one, but I couldn't take my migraine medicine because I couldn't keep anything down. Yuck, yuck, yuck. That was about five hours I could have done without.

However, now that the magical 48 hours after the infusion have passed, I'm fine, if a little lighter on the old scale.

I don't see the oncologist for another month, at which time I'll get another infusion of Zometa. I've got an x-ray of my hip I have to get before then to see why I get pain when I wear my cute high-heeled boots. I never used to get hip pain with them, but I sure do now. If I wear flats, I'm fine, but the doctor wants to check it out anyway to catch anything as early as possible. I may need radiation there if the x-ray shows it warrants it. I guess the x-ray is better at diagnosing some things than the MRI is--who knew?

Other than that, life is going on as normally as possible. Entropy Boy and I are marching our way through ancient Greek history. Today we discussed the Iliad and the Odyssey; Joe has English translations upstairs somewhere. I should dig them out.

Tomorrow Spiff has the day off school for a teacher in-service so we'll hit Dunkin' Donuts to make the day special!

New Drugs Today

Today was my first infusion of Zometa, a bone-building drug that is also used for osteoporosis. The infusion only took about 15-20 minutes and didn't need steroids or Benedryl with it, so it was quick and easy compared to chemo. Any side effects will likely happen in the first 48 hours, so I was told to take Tylenol every six hours until that time period is over. So far, so good. No side effects. Since the most common side effects are flu-like symptoms (fever, achiness, chills), that makes me pretty happy.

So right now the game plan is for me to stop the Tamoxifen as of today. I took it less than 90 days. It just didn't work for me the way it was supposed to. I guess I have super-charged ovaries. I got a shot of Lupron last month and then got a 3-month shot of it today since I tolerated it well. It puts me into menopause while it is in my system, so hot flashes are now part of my daily experience.

In a couple of weeks I will start another drug that is supposed to help combat the attack on my bones. That will be a daily pill--Arimidex. That, combined with monthly infusions of Zometa for the next couple of years, will be my new normal.

Yes, It Is Spreading to My Bones

I saw the oncologist today. It has begun to spread to my bones. We've caught it in the very early stages--if she didn't check cancer markers each time (her colleagues don't) and if I hadn't complained about my hips hurting after exercise, we likely would not have caught it until later. I see God's grace in that.

It is in the early stages and, while we can't eradicate it, people can and do live and fight this for many years. Who knows what breakthroughs they will find in the next five years? I can say that now--I've shed many tears in the last week and have really been fighting with despair.

We'll be switching my medicines now, since the Tamoxifen doesn't seem to be working. Please pray that the medicines are effective and keep the cancer from spreading any more. Please also pray that the side effects of the drugs may be minimal.

It could be something, or it could be nothing, but. . .

I saw my oncologist today. She said that my cancer markers (one of the blood tests they run each time) are up for the first time, ever. The bone scan that we had done showed spots on my left upper arm and on my hips. My hips could be the beginnings of arthritis, but she's not sure what's up with the arm since I haven't had any injuries to it. So I'm getting some MRIs done, hopefully moving them to next week instead of the end of the month to see if that helps the diagnosis any.

The tentative plan right now is to put me into menopause with drugs and stop the Tamoxifen. The Tamoxifen was supposed to be fooling the cancer into thinking it was estrogen, but the cancer markers are up, so obviously some of it wasn't fooled. So, we'll put me into menopause to take away the estrogen and switch to another drug. Also, if the bone MRIs do show something, then I will be taking injections weekly/quarterly to fight those areas too.

That was a lot to take in today.
Please pray that this is all nothing, that the spots that showed up on the bone scan miraculously disappear, and that my cancer markers go back down. I'm tired and not ready yet for round two.

I saw my plastic surgeon as well and got the last two drains out. Normally I'd be rejoicing, but I saw the oncologist first. The plastic surgeon said that they did test on what flesh they removed with the expander, and it was free of cancer, as was an internal lymph node they removed. As far as my current surgical wounds go, I'm free to stop the daily dressings. I need to wear a girdle (like Spanx) instead and keep on wearing the compression bras. I will hopefully get the stitches out next week.

Staying Home from Church Today

I really wanted to go to church this morning, but Joe and I weighed how long it would take me to get ready (1/2 hour for wound care, plus showering and dressing and dealing with concealing/attaching my drains to clothing), how long it would take to get to church, and how well I would be able to sit for nearly 2 hours in the pew before driving home again, plus the need to take pain meds while there. We decided that this week was too soon yet. The exertion of getting to church would wipe out my energy for today and perhaps for some of tomorrow.

Slow and steady wins the race. Joe and Entropy Boy went to church and Spiff is home with me to keep an eye on me.

Here's my theme song today:

Friday Morning

I am having a nice visit with my family. I'm still sleeping on the couch, and in a neck and neck in the race with my dad to take the most naps each day.

I was supposed to be taking heparin shots since I was released, but due to all sorts of frustrating circumstances, I finally started them yesterday. I have to give myself two each day, about 12 hours apart. I already had practice with the neupogen shots during chemo, so it isn't hard. I still don't enjoy doing it, though.

My wounds are healing really well. I'm amazed at how much healing has gone on already. I put Bacitracin on them every day, and that really speeds up the healing. I still walk hunched over, but I think it is more from the tape holding my bandaging on restricting my movement. Today I'm going to go a different route. Instead of using 4 x 4 guaze pads, I'm going to use long maxi pads and hold them on by wearing an ace bandage as a belt. Hopefully that will give me a little more freedom of movement around my waist and be easier to change out each day. Right now it takes 5-6 gauze pads and a ton of tape to hold everything in place, and I'd like the process to take a lot less time each day.

I'm very pleased with my new "rack" and glad that it isn't any bigger. It is in nice proportion right now. I will likely get a little smaller later after some swelling goes down, but they are very natural looking and feel very natural. When I move my arms, I don't feel an expander tucked under my muscle any more. I just feel squishy fat, like I used to feel. Right before and right after the surgery, I wasn't so sure I had made a good decision because of the pain and amount of healing involved, but I think the memory of that all will fade with time. I'd love for this to be my last surgery ever!

One thing that does really amaze me is the people on extreme makeover shows who get a whole bunch of plastic surgery at once. I can't imagine, knowing what I do now, electing to do all that surgery without needing to. Or electing to have surgery more than once.

I Showered Today

The plastic surgeon said that I could take a shower before redressing my wounds, so I did today. That pretty much sucked up my energy for the day. I have stitches from hip to hip, so it takes a bit to cover that properly and keep the dressings on. Plus, I still have the two drains on my hips to deal with. The output from them is very low, so hopefully they will come out next week.

My mom and dad are here to help out and have been wonderful. My floors are now swept and vacuumed and everything has been dusted. The Christmas tree was brought up from the basement and Entropy Boy decorated it with my mom. He had an absolutely great time and chattered throughout the entire process.

Spiff goes to the Statue of Liberty and Ellis Island tomorrow for a field trip. He is so excited that I'm surprised that he is able to sleep. I, on the other hand, have a warm kitten on my legs and I'm ready to fall asleep while everyone else watches season two of the original Star Trek series.

I Finally Got to Talk to the Oncologist

Evidently, she tried to call last night and it rang as a fax number.

My bone scan had some spots show up on my hips and on my left arm. They could be the beginnings of something or just the start of arthritis. I'm praying for arthritis versus the alternative.

She said she wanted to keep an eye on me sooner because her assistant had led her to believe that I wasn't scheduled to see her again until January.

So, I have some hip MRIs and an x-ray of my arm in my future, after I've done some more healing from the surgery.

I did get two drains out today at the plastic surgeon's office, so I only have two left. I need to take iron to help combat the blood loss from the surgery, aspirin to help prevent blood clots, and daily shots of a blood thinner to help prevent blood clots. I'm on Tamoxifen for the cancer, and it can increase the chances of blood clots and the surgeon wants all those little vessels he sewed together to stay working.

Thank you all for the prayers--please keep on praying! I feel emotionally drained today, on top of being physically drained.

Please Pray

Joe told me on Saturday the oncologist's office had called on Friday to confirm an appt for today. I had made an appt, but had changed it due to the surgery. I called this morning to see what was up. At first it was just a mix-up on time--they had moved the appointment and forgot to cancel the first one.

But then the office called back and the oncologist wants to see me sooner "to keep a closer eye on me". I have no idea what that means and called twice to ask that my oncologist call me back. My mind is going to all the worst-case scenarios. I'm crying and I'm scared and I feel betrayed by my body and by my oncologist for not calling me back.

I just want to be healthy again. I just want to be healed. I want to be here for my husband and my kids. I'm just so scared and I've spent the last couple of hours sobbing.

Please pray. Please, please pray.

Home Again, Home Again, Jiggity Jig

I arrived home yesterday (Sunday) afternoon. It was a low-key homecoming because I needed a nap soon afterwards. I had felt great on Saturday morning and took a sponge bath, but the exertion made me tank for the rest of that day. Note to self: save that energy so you don't spend the rest of the day sleeping.

Joe is home today because the surgeon wanted me to have someone around today so I wasn't alone with just Entropy Boy.

I got two of my six drains removed on Saturday morning, so now I only have four to deal with. They are still a pain and I am looking forward to them being removed (I'm praying that it will happen this week). Two are very low on my hips, so I'm alternating between the two pairs of low-slung sweatpants that I own.

I'm moving around as well as someone who is 40 weeks pregnant. My back hurts like it too. Because I have to be careful of my stomach incision, I've been using my back to compensate and I can feel the strain on my muscles. To reach something on the floor, I have to do lunges with my legs, keeping my back straight and reaching with my hands to the floor. I'm going to have some really strong thigh muscles when this is over.

My pain medicine has kicked in and it is time for another nap.

I'm out of SICU and in a regular room

They will take me off the pain pump later today. I'm sad about that. I love my pain pump. I"m still on a liquid diet until later this evening, but I'm not really interested in eating anyway.

My arms work well this time around, but twisting is completely out of the question. My stomach muscles are going to be really sore for the next 2 weeks. Recovery won't be linear--it will be steps forward and then backward again.

If this is disjointed, it's because I"m well drugged right now.

She's done!

I just talked to the surgeon and she's done. I'm off to see her now.

More later...

9:45 Still Waiting

About an hour and a half ago a nurse told me that the surgeons were closing, so hopefully everything will be done soon. But no news yet. It's just me and one other family in the waiting room now. I talked to LH and the boys are in bed. I'm glad they're able to sleep, I'm sure it's been a hard day for them.

Three More hours

The nurse just called. The micro-surgery is now complete and they're now beginning to close her up. Everthing should be done in another three hours. Ugh. I guess the "three hours" last time we talked meant three hours of micro-surgery.

4:00 p.m. Still Waiting

I heard from the nurse at 2:00 and she said there were about 3 hours to go. If so, that would mean things should be wrapping up around 5:00. After that there will be time in the recovery room before Sandy is moved to ICU. We arrived at 6:00 a.m. and she entered surgery at 7:30. Since then I've seen the waiting room turn over once, although there are a couple of families that have been here as long as I have been.

It looks like we're in the home stretch now.

Reconstruction Day - Lunchtime

About 5 hours done and about 7 to go. The waiting room is the most crowded I've ever seen it. There were nearly 30 people here at one point. The TV has remained at a low level and everyone is pretty respectful of everyone else around them. Most people are reading or working on their computers. The woman with the skein left about an hour ago--she crocheted a few squares of something, but I never thought to ask her what she was making.

Reconstruction Day - Early Morning

It's going to be a long day. We were up at 4:30 this morning and dropped the boys off with a friend at 5:30 (Bless you, Lisa!). Spiff has his last day of school before Thanksgiving vacation and Entropy Boy will probably be playing games all day.

We arrived at the hospital about 6:00 and went through the standard preadmission screening. After that, we met with the anesthesia intern, who goes to our church, and then the plastic surgeon. They took her back into surgery at about 7:30 and I was told to expect the whole process to take about 12 hours.

I'm up in the waiting room now and it is full. The TV is relatively quiet (God does answer prayer...) and most people are reading or working on computers. THe woman across from me pulled out a huge skein of yarn, the size of a basketball, and is carefully winding it into a tight ball. I wonder how far she'll get today.

Months Later--I'm Back

Well, tomorrow is the big day for my reconstruction surgery. I'm having DIEP flap reconstruction surgery. Basically, they take my belly fat and my extra skin from having two large babies and make me new boobs with it. They snake a blood supply up each side to sustain their work as well.

So, I get a new rack and a tummy tuck. I'd be more excited, but I'm kind of nervous. Plus, I had to be on a liquid diet today, so I'm a tad cranky. Not much other than tomato soup and jello will do that to a girl.

Joe will keep everyone updated here on the blog as to my progress. I should be in surgery for about 6 hours (at least) and then in ICU overnight. Wednesday I should be moved to a regular room until I am released, hopefully on Friday or Saturday.

A great big thank you to everyone who is taking care of my kids, providing meals, and generally supporting Joe and I this week and the weeks to come. You all are a huge blessing and we appreciate you so much.

Today We Received Our First Farm Share Box

Today I picked up our first box of veggies from a local farm as part of our "share" in a Community Supported Agriculture (CSA) program.

What is a CSA?

Over the last 20 years, Community Supported Agriculture (CSA) has become a popular way for consumers to buy local, seasonal food directly from a farmer. Here are the basics: a farmer offers a certain number of "shares" to the public. Typically the share consists of a box of vegetables, but other farm products may be included. Interested consumers purchase a share (aka a "membership" or a "subscription") and in return receive a box (bag, basket) of seasonal produce each week throughout the farming season.

(Click on http://www.localharvest.org/csa/ to see if there is a CSA near you.)

We got an amazing bounty today! Joe is very happy with the two bunches of lovely radishes and we are both looking forward to trying the "salad turnips" that we received. I think I may cook up the turnip greens for just Joe and I--there aren't enough to share with the boys.

The email I got from the farm today tells all about the goodies we got.

This week in your box you can expect heads of green leaf lettuce, which is great on a sandwich or for salads. This variety is new to us this year (it’s called green star) and it looks and tastes wonderful. We also harvested bunches of baby kale (the most tender of the season), radishes, and salad turnips (full shares). Something new that we grew this year is English greenhouse cucumbers. They are so tender and sweet I cannot seem to get enough of them. The broccoli raab is small and is great sautéed with scallions (full shares) and garlic with a little butter and olive oil. Shares picked up later in the week might have a baby spinach / leaf lettuce mix instead of baby broccoli raab. Full shares will also see a bag of Asian salad / sauté mix. This is a mix of kyona mizuna, hong vit (pink stem radish leaf), red komatsuna (dark maroon leaf), ho mi Z and green wave (spicy mustard greens), and corn mache. These greens are a colorful and flavorful addition to salads or could be used in stir-fries or braised. Full shares will also have bunches of bok choy. Bok choy in Latin, its scientific name, is brassicca chinesis or Chinese cabbage. The Chinese commonly call it pac choi or white vegetable. It has a sweet light flavor and crisp texture, and can be used in salads, stir-fries, and soups. Bok Choy when flowering is called bok choy sum (in Cantonese actually means heart). The leafs may get lighter in color and you will see small yellow flowers in the center of the plant. It is said that these are the best bok choy plants. Also in everyone’s box will be herb pots these should be transplanted either into a larger pot or into the ground.

We got flat-leafed parsley and chives in a pot--both of which I needed for my garden plot anyway.

We got three heads of bok choy in the box, which is heavenly. I LOVE bok choy. Tonight we had Asian pan-fried noodles with sauteed bok choy and chicken. It was soooo good!

One Month Later. . .

I haven't been blogging much lately. I've been trying to get away from contemplating my navel and work on getting back to life instead. I need to focus on other people for a while.

There isn't much new on the cancer front. I meet with the plastic surgeon early June to see what the next steps are with him. I will likely not have surgery until October or November because my skin needs time to heal. Right now it is kind of leathery where I had the radiation.

I don't consider myself "cured" or "cancer-free" and I don't think my oncologist does either. Since I had cancer cells show up in my lymph nodes, we know that I had cancer cells floating around in my body. We tried to kill them with chemo and tried to clean up the original cancer site with radiation, but we don't know how many more are floating around. The tamoxifen I'm taking is supposed to help reduce the chance of the cancer coming back. But it doesn't eliminate the chance it is coming back.

So for now, I live in limbo. I have completed treatment, but the journey isn't over. The uncertainty is still there. It is the same uncertainty that everyone has in life, but most other people get to ignore it and pretend that it isn't there.


In an effort to begin ignoring it again, I'm trying to focus more outwardly. Last night one of our neighbors was taken away in an ambulance with oxygen. I'm making stuffed ziti to take over today. I just saw him out the window, so he is back home, but I'll take the meal over anyway. They are doing construction, so it will likely be nice for his wife to have a break from cooking.

Knitters--Check Out This Blog Giveaway!

My e-maginary friend Lona raises sheep, knits and spins, and has an etsy.com shop. She is giving away a knitting kit on her blog--click on Farming in the shade: Bloggy Giveaway! to enter!

Be sure to stop by and read her blog as well--she has the coolest sock knitting machine!!!

Camping in the Back Yard

I am declaring this the beginning of Operation Create Family Memories. Last night we camped out in the back yard, and tonight the boys and I are sleeping in the tent once again. Joe prefers to sleep in his own bed tonight. Hank the Cowcat will be happy for the company. I'm sure he freaked out last night because all his people were outside with out him.


My brother S and his wife K sent us a package that arrived in the mail today--hotdog/marshmallow roasting sticks! Thanks S&K! We put them to good use already tonight and roasted some marshmallows. Last night we cheated and ate mini smores cookies from Honey Maid--they're all the taste without all the work!

Can we please just roast marshmallows now?

As you can see, we are indeed crammed into the back yard with the tent and the outdoor fireplace. This is the way memories are made, folks.

What are you planning to do this summer?

Where Does He Get This Stuff?

Spiff is in the back yard with Entropy Boy. They are always in their own little world back there and forget that the whole neighborhood can hear them and can look out their back windows and see them.

Spiff is back there doing accents. First we get "Mama mia!" and an Italian-American accent. Ok, he could be getting that from relatives, but I don't think so.

Then he switches over to Norwegian-accented English. I grew up hearing it, but he hasn't heard it much at all. He's got the accent and the sing-song sound down.

Then he breaks into a made-up rap, complete with percussion sounds. I have no idea where that one came from.

This is the same kid who, at the age of 6, declared in the backyard "I feel a song coming on" and started belting out a show tune.

The same kid who says he is waaaaay too shy to join the drama club.