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.

Monsters vs. Aliens 3-D

Today's guest blogger is Spiff, here to tell you about the movie he and I went to see today:

...OK OK. I'm here. So what do I talk about? Oh. yeah. The movie. Its hard to explain. If this is not descriptive enough, try to see it yourself. So a summary is: A girl gets hit by a meteorite on her wedding day, she starts glowing, LITERALLY GLOWING, and turns into a monster (still as her conscious self) and with her 'monster' buddies fights an alien. End of movie.

I'm Tired of Having Cancer

I've done the surgery. I've completed chemotherapy. I've completed radiation therapy. My hair is growing back--I even had to shave my legs last week.

At what point do I not "have cancer" any more? At what point do I cease to wonder and worry? My oncologist didn't really have any set answers for me today. We are treating a microscopic disease that we didn't even know was there until I found a lump. I have an Rx for tamoxifen and will start taking that as soon as the prescription is filled (we are doing it mail order). I will be on some drug or other for years. I could still have cancer cells swimming around in my body, and hopefully the drugs will keep them from starting to collect and grow anywhere.

The cancer could come back, or it could not. We just have to watch and wait. Some days that just makes me want to scream.

I don't get my life back--not the way it was before. I never get to be complacent about it again. That. just. stinks.

Could you pray for some peace for me? I'm struggling today. Thanks.

Still Peeling

Not that you really wanted to know or anything. The pain has mostly gone because my skin has started to crack and peel so much that it is no longer feeling "too small" for me.

Think of your worst sunburn ever. Then think of getting it about 5 days in a row and what your skin would do afterward. Yeah. It's like that.

Gross.

Only Two of Us will Be in Church Easter Sunday

Spiff and I will go to Easter Sunday services tomorrow while Joe stays home with Entropy Boy. Why? Because Entropy Boy, who just finished up amoxicillin on Thursday for strep and scarlet fever, woke us up late Friday night with a barking cough. We spent some time in the bathroom letting him breathe in shower steam, gave him a few puffs on his inhaler, and put him back in bed with the steamer.

I took him to the doctor (thank you Ped. Healthcare for having weekend office hours!) and he has croup and strep (again!). He's on azithromycin for the strep and has steroids I need to give him tonight before bed for the croup. He's not allowed at church because he won't have been on the abx for 24 hours by the time services start.

I am so glad the boys have spring break after Easter. Entropy Boy's classroom will have the chance to air out and let those germies die for a week.

Radiation Therapy is Finished

I'm done! I'm done! Praise God, I'm done!

To the tune of "Peace Like a River"

I've got skin like a lizard,
I've got skin like a lizard,
I've got skin like a lizard,
Under my aaaaaaarm!


Yes, I am peeling and it's pretty ugly. It may get worse in the next 7-10 days before it gets better. But in 2-4 weeks I should start feeling like myself again.

Meanwhile, I got tons of hugs from the Hunter Radiation Therapy people and a graduation certificate because today was my last day. I don't see the radiation oncologist again for a *year*.

Joe came home early from work and picked up the boys from school. They stopped off and got me flowers.

We all went out to eat at Kobis, the Japanese steak house in town. Believe me, it was a hard sell to get the boys excited to go. I finally pulled up the website for Spiff and the video of the hibachi chef convinced him it might be tolerable. When we got there, we had to walk on a little bridge over a koi pond. There was a Japanese drum on a carved stump. There were bonsai. They started thinking this might be ok.

When the soup course came, Spiff fell in love with it. Fried onion soup--who knew? Meanwhile, Entropy Boy was having fun slurping off the Chinese soup spoon. Then the chef rolled up with his cart and the show began. I won't give you a blow-by-blow, but let's just say the boys have a new favorite restaurant.

Now we're back home (it is a school night, after all) and Entropy Boy is upstairs in the tub, dreaming of koi.

I Have Frozen Veggies in My Armpit

And they are there at my doctor's suggestion.

My skin under my arm has been getting redder and redder. It is so tight that it hurts to raise my arm. It has been keeping awake at night because every time I roll over the pain wakes me up. This morning a portion of the skin started to peel.

So today was my doctor-visit day and she suggested a bag of cold peas under my arm to bring down swelling. The nurse gave me supplies to do saline soaks 3 times a day before I use the cream or Aquaphor. Of course, I didn't do any of it today because I took a 2 1/2 hour nap after picking up Spiff. Entropy Boy was already home with scarlet fever.

So now I'm sitting with frozen veggies in my armpit while pasta cooks on the stove. The boys are learning opera via Bugs Bunny. Eh. Stranger things have happened.

Knitting and the Eternal Optimist

I always think it will be different this time, but it never is.

SW gave me some amazing hand spun silk/cotton/wool blend yarn. Like most hand spun yarn, it was in a great big loopy hank that showed off the colors nicely. The problem with those great big loopy hanks is that they tangle the first time you look at them. In my head, I know for a fact that they tangle. But my heart and my fingers are usually itching to get started on a project, and so I dive in, believing that *this* time it will be different. *This* time it won't tangle, so there is no need for me to wind it into a nice neat pull-from-the center ball.

Uh-huh. Right.

On row 20 of my project, I had to give up and find the opposite end of the hank. I spent two hours untangling the mess and winding that opposite end into a ball. The cat, who was watching patiently and hoping for an opportunity to pounce, eventually gave up and took a nap on top of my knitting pattern. He opened one eye to check my progress each time I muttered under my breath.

I'm nearly finished with the tangle. The rest can wait until the morning. Hopefully the cat won't decide to "help" while I'm asleep.

I Want To Be A Kid Again

I just finished registering Spiff for summer day camp at the Yale Peabody Museum. Last year he learned what museum curators do and got to go behind the scenes at the museum. He learned how the displays are made and how to make a cast of a log and paint it to look real. He had a BLAST.

This year he will be participating in Bones & Stones: Anthropology Camp

If you have always been interested in ancient cultures and archaeology, this camp is for you!




Each day of this 5-day program will be devoted to different topics, including archaeology, cultural anthropology, forensic anthropology, Egyptology and art history. Behind-the-scenes tours of the Yale Peabody Museum’s collections, local field trips including a real archaeological dig, and lots of exciting hands-on activities are planned.

Doesn't that look fun?

A Praise and A Quick Prayer Request

I am now 1/2 done with radiation!

So far, my skin only looks like I got a bit too much sun. Please pray for healthy skin for the remaining half of radiation. If it starts to break down into open sores I will have to do saline soaks and a whole bunch of other not as fun things. So please pray the cream I use 3x daily does it's job and that my skin stays healthy!

Overall, I'm tolerating it well except for fatigue. The fatigue, combined with my trying to wean off Lexapro, is stepping up my migraines to 1-2 a week. My migraine meds are doing well to keep them under reasonable control once they start, but they are a mighty disruption to life when they occur. The Lexapro was helpful during chemo (the chemo drug Taxol, along with the general stress of cancer, can cause depression) but now I am ready to feel ups and downs again. The Lexapro has made things too flat lately.

And Now for Something Completely Different. . .

Extreme Sheep LED Art

I'm Glad I Checked the Calendar!

I'm getting a massage today! I would have forgotten if I hadn't checked the calendar.

Last week, while I was waiting for my turn at radiation therapy, a woman plunked herself down next to me and said "You're a patient, aren't you?" (Gee, do you think the scarf tied around my head gave it away?) She was signing radiation patients up for Complementary Massage. She had the most wonderful accent--German perhaps? Anyway, my appointment is for noon today.

Joe has been in Maryland, and I had a horrible migraine yesterday morning. I had to call the mom of one of Spiff's schoolmates to come pick up the boys to take them to school. She works at the school and they only live a few blocks away, but it was a hard morning for all of us. We were all in bed by 8 pm last night.

I am so looking forward to that massage today!

I Don't Have Attention--Oh Look! A Butterfly!

I haven't blogged for a while. I've thought about it, but by the time I got over to the computer I got distracted and did something else. That is the story of my days recently. I am so very easily distracted.

Chemo left nothing but Swiss cheese in my short term memory storage. Instead of things being written in stone in my brain, they are written on post-it notes. Every time a breeze blows the little notes flutter away. Look! Aren't they pretty?

On the bright side, my word recall has come back. So, if I could remember what I wanted to talk to you about, I could actually use the correct words to do it.

Let's see. . . to update, the tingling in my fingers is gone completely and 95% gone in my toes. My hair has grown back to the point that it now looks like my "after" photo from my hair-shaving last fall. It started coming back white at first, but now the dark hair has started to come back as well. The first to fall out was the first to come back in, so it isn't an even length all over.

I can see that my eyebrows are starting to come back in, and my eyelashes are just long enough to put mascara on now. It's nice to have eyelashes again--my face doesn't scream "Cancer patient!" now that I am getting eyelashes.

I'm done with 8 of my 25 radiation treatments. My skin was starting to show some redness on Friday, but the weekend and lots of cream has helped fade it. At the end of this coming week, I will be half done with radiation.

Radiation leaves me tired. It isn't the mind-numbing, all-encompassing tired that chemo brings, but I am tired none the less. Since I have to go to radiation every day, I don't get a day to just kick back and have an unstructured day. I suppose the structure is good, but it is a pain to have to organize life around those daily appointments.

Waiting For Me By The Door

I just got home from a radiation therapy session to find a box of paper plates, paper cups, and napkins on my doorstep. There were two magazines in there too.

Whoever dropped them off: THANK YOU!!!! They will make mealtime that much easier. The nurse today told me I'd likely be my most tired on Fridays and Saturdays due to the cumulative effect of the radiation. So Fridays and Saturdays will be our paper plate days!

One Day Down, About 25 More to Go!

Today's Radiation Therapy was a dry run--they had me lay on the table and made sure everything was set properly so that they can put me in exactly the same position, etc. every day.

It was totally cool to watch the machine that directs the radiation field. It has all these little lead rods in it that move forward or back to make sure the radiation only goes where they want it to. The machines get pretty close, but I don't tend toward claustrophobia, so it was fine.

I start in with the real rays tomorrow. They'll also sit down with me at talk about skin care, creams, etc.

Today it only took me about an hour to go there, have my appointment, and get back. I'll be doing the trip daily, so I'll be able to do errands to places like Trader Joe's and other stores on the Boston Post Road whenever I need to. Hmmmm. I'm thinking that there are some Trader Joe's nitrate-free hot dogs in our future!

Radiation Starts Tomorrow!

I got a call from Yale Hospital's Radiation Therapy dept--I start radiation therapy tomorrow at 12:15 pm. Tomorrow will just be imaging to make sure once again that everything is set up exactly as they want it. The 12:15 time slot is mine until I am done with therapy.

It takes a while to get the treatment plan set up, but once it is ready everything just chugs along like clockwork. Lord willing, I should be done before Easter!

No News Yet on the Radiation Schedule

I called on Monday to see if they had gotten my radiation schedule set up yet. They hadn't and said it would likely be done at the end of the week. I called again today, but they still aren't ready with it.

On the one hand, I am really enjoying having the time off to recover more energy before I start radiation. On the other hand, the delays are only pushing out the date for when I can finally be DONE.

I did meet with my plastic surgeon this week. I scooted in right before he left for Vietnam this week to work on cleft palates. I asked what the time frame would be for surgery after radiation, and he said he wouldn't consider doing it until six months after radiation. My skin will at least that long to heal. That puts us into fall and the school year, but we will cross that bridge when we come to it.

Other than that, life just marches on. There is laundry to fold, dishes to wash, and cat hair to vacuum. Some things never change!

Spiff's Chocolate Pudding Pie

Spiff is making dessert for after dinner tonight. Here is the recipe he is using, based on what we had available at home:

Chocolate Pudding Pie

1 Oreo crumb crust (purchased on clearance at the grocery store)
1 recipe chocolate pudding*
1 (3.9 oz) box Vanilla chocolate chip instant pudding
1 cup milk
1 (8 oz) container Cool Whip, thawed
Chocolate shavings

* Chocolate Pudding
1/2 c sugar
3 heaping TBSP baking cocoa
1/4 cup cornstarch
1/8 tsp salt
2 3/4 cup milk

1. Combine sugar, baking cocoa, cornstarch and salt in a medium saucepan. Stir in milk. Heat over medium high heat, stirring constantly, until mixture comes to a boil. Boil 1 minute.

2. Place 1 1/2 cups of chocolate pudding in crust. Let cool in refrigerator for 1/2 hour. Put remainder of chocolate pudding in Dixie cups and place in freezer for fudgecicles.

3. Combine milk with instant pudding mix and beat for 2 minutes. Fold in half of Cool Whip. Spread pudding mixture on top of chocolate pudding in crust.

4. Spread remaining Cool Whip on pudding mixture. Garnish with chocolate shavings. Chill 3-4 hours.

Enjoy!

My Boys Get the "Best Kids Ever" Award Today

I woke up shortly after 5 am with a migraine. I scooted downstairs to take my migraine medicine, but it was too late to stop it. I spent the next three hours in agony until the medicine finally cut it short.

After I finally fell back asleep, Spiff came in to see why I wasn't up (the boys are on Winter Break this week). I told him that I'd had a migraine and he said "OK, I'll get breakfast for me and [Entropy Boy]. Can I watch Star Trek on Netflix?" And he did. They kept it blessedly quiet in the house for the next two hours so I could sleep. Spiff watched his show and Entropy Boy played with Matchbox cars and Hotwheels tracks.

Shortly after lunch, I dropped the boys at D & FL's house (thank you so much!) and went to my radiation set-up appointment. They gave me a CT scan and three tattoos to mark the proper set-up for the radiation machines. They will get back to me in 5-7 days with a treatment plan.

When I went back to pick up the boys, FL had made a chicken pot pie and banana bread for our dinner. It was so nice to not have to cook, and Spiff went back for seconds and thirds.

We've had a quiet evening since we got home. Joe is setting up a server that his company gave him to work on some projects. The boys are watching Netflix. I'm still in a post-migraine funk. Bedtime soon!

Happy Valentine's Day!

Wow! I felt like a normal person today. Amazing!

Joe and the boys let me sleep in until 9 a.m. We puttered around the house until it was time to go to a friend's house. My friends KP and MP were husband-less this weekend, so volunteered to watch our boys while Joe and I went on a date.

When we arrived around 3 p.m., the kids immediately ran off to go shoot Nerf weaponry at each other. Joe and I sat down with KP and had a wonderful chat sans children. After a while we headed out to an Indian restaurant. Oh, the food was so good! We had a chicken appetizer platter and then vegetarian entrees with rice and garlic naan on the side. The restaurant gave us complementary glasses of champagne at the end, but I didn't even take a sip. I REALLY wanted to, but didn't dare because I didn't want to add alcohol to the miasma of stuff my liver has had to deal with.

When we got home, the boys collapsed into bed. They had a great time playing with their friends and want to know if the parents can exchange date nights every week.

I hope your Valentine's Day went as well as ours did!

Amazing Arnica

Today I got to sleep in until 7 a.m. Bliss! Joe and Spiff went out to run errands while Entropy Boy and I puttered around the house. We made banana-peanut butter-chocolate chip muffins together. We even played with Play Dough. He ran a seafood restaurant and made me Play Dough delicacies while I knitted.

One of the things that Joe did while running errands was to pick up a prescription for me that had been waiting at the pharmacy for several days. I had told my oncologist at my last appointment that I was having neuropathy (pain and tingling) in my feet. It was keeping me awake at night and I was nearly out of percocet. So she wrote me an Rx that was supposed to help with neuropathy and warned me that the drug could cause nausea.

Well, heck. I don't want to be nauseous. So I looked around to see what else I could do. I remembered that we have some arnica rub that works well on bruises and swelling. Arnica is pretty amazing stuff and has been used for centuries (Remember Little Women? It's mentioned in there.) So I tried it on my feet. It worked! My feet didn't hurt in the morning!

So now I put stuff called The Arnica Rub on my feet twice a day. It has arnica, St. John's Wort, comfrey, and some other nice herbs in it. I've been able to sleep three nights without having to take pain medication. Yippee! I have the Rx from the oncologist as a back up, but for now I'm going to be using the arnica because it doesn't make me nauseous or put more strain on my liver. My poor liver needs a rest after all that chemo.

Has It Really Been a Week Since I Posted?

I went to see the radiologist today. We talked over what was going to happen next and scheduled my "dry run" of radiation on 2/16. I had asked if we could not have radiation the week the boy had off from school, and the radiologist said that was fine as it would give me an extra week to get my energy level up. I'll start actual radiation treatments on 2/23.

I also met with the oncologist today. I won't see her again for 8 weeks, at which time I will start Tamoxifen. I talked to one of my nurses and she gave me a big hug. I won't miss the chemo, but I will miss all the people I saw each week!

My hair is peach fuzz now, and white. My head is itchy sometimes now due to the grow-in process.

The boys are eating a snack before getting ready for bed. They had an early release from school because of snow. Joe is about to go out and clear the driveway. We are expecting a regular school day tomorrow.

The balloons from my last day of chemo are still around the house. The cat plays with one of them each night, grabbing the string and dragging it around the house. We know where he is by the balloon floating through the air.

I'm Ready for Them to Go Back to School Now

The boys were both off from school Monday and Tuesday due to fever or not having been over fever for 24 hours. Spiff could have perhaps gone back for Tuesday afternoon, but he was blowing his nose so frequently (and loudly) that I kept him home.

Today, Wednesday, school was canceled due to a winter storm. The boys were both well, however. How could I tell? They were bickering, getting entirely too silly, and generally creating a ruckus whenever they were near each other. Yeah, they felt better. [rolling my eyes]

If I were homeschooling them, we would have just continued our lessons. But I didn't want to cobble something together for today when they felt better. So, we played too many Wii games and just generally frittered the day away. Spiff said at bedtime that he was glad he was going to school tomorrow. Me too, buddy. Me too.

Here's my update:

I'm a week past my last chemo. It takes longer and longer to recover after each successive round of chemo, so I'm still not out of the woods after this last round. My toes and legs hurt so much in bed last night that I had to take percocet again. I'd like to be done with it, but at least I don't have to take it during the day anymore.

I'm still tired, but not like I was after the A/C chemo. I can exercise 10 minutes without wanting to take a nap afterwards.

I meet with the radiologist on Tuesday, Feb. 3 to go over the game plan once again. I expect I'll get my tattoos and start radiation the next week. Unfortunately, the boys have the week off from school during the 3rd week of Feb, so I will have to figure out childcare for that time. It's always something! 8-P

Two Sick Boys (and a partridge in a pear tree?)

Both boys are home sick from school today. Entropy Boy's fever was 101.2 this morning. It dropped down to 100 after some Tylenol, so I gave him some Advil two hours into the Tylenol dose. Spiff had a fever yesterday, but is down to 99.1 without medication today. Other than body aches, a stuffy nose, and a fever, they seem to be ok. I seem to not have picked it up so far, but other than the fever, how would I know? [grin]

We are having yet another quiet day at home today. I guess that is good thing.

Pajama Day

Today was Pajama Day.

Spiff didn't get to go to the birthday party because he woke up sick. Every time he sneezed he sort of coughed in the middle of it and you could tell it was painful. I gave him some tea and let him play games and watch movies all day. He also took a nice hot bath mid-day, but changed right back into his pajamas.

Entropy Boy was healthy, but loves to hang around in pajamas all day anyway. He watched Scooby Doo on Netflix and played a Hot Wheels game. He also did a "science experiment" attempting to re-create the way asteroids hit the moon. He dropped metal marbles into a pan of flour and then lifted them out with a magnet. He had a great time, made a mess, and then cleaned the mess up himself with the dust buster. I think he also looked at some of the flour under our microscope. We had the stereo microscope out because he was looking at his teeth with it. The Tooth Fairy doesn't come to our house; the microscope comes out instead. Weird homeschoolers!

I spent the day in my pajamas as well. I tried to take a nap, but couldn't because I had only taken Advil for the pain. I finally took percocet in the late afternoon when I knew that Joe would be coming home soon. Joe can tell when I have taken it and when I haven't. When I have only taken Advil, I walk like a crabbed old man.

So I made it through today. It was nice to have the boys home because they were a distraction. They are in bed now, and Joe is gone to meet up with some of the guys from church. I'm going to stream another Netflix movie and call it a day.

Ouch.

Two days post chemo. One day post Neulasta shot.

Ouch.

On the bright side, the boys are off from school tomorrow for a teachers' workshop. Spiff has a birthday party to attend, but other than that it will be a quiet day.

I'm just counting down the days until the pain is over.

Two Nights, Two Teeth

Entropy Boy lost his very first tooth last night. He lost a lower front tooth. My baby is growing up!

Tonight he came down with the next lower front tooth in his hand. Two nights, two teeth!

I wonder what he is going to do with his time now? He has been obsessively wiggling these teeth for ages!

Want to know how many miles I drove to medical appointments last year?

We're tallying it up for tax purposes.

So far the count is 1,265.4 miles. Whew!

Oh Happy Day!

Today was the LAST CHEMO TREATMENT!!! Yes, I'm shouting. Can't you here me from where you are sitting? I'm thinking Cara should be able to hear me all the way over in the Middle East!

Joe and I dropped the boys off at school (they were on a 90-minute delay due to snow) and then drove to the oncologist's office. Since we had some time to kill before the appointment, we drove over to Krispy Kreme (the only one in CT!) and picked up a dozen donuts for the nurses and staff. They were all very happy to see us when we walked in.

They drew my blood and did my counts while waiting for the doctor to arrive. All the doctors were running late due to the snow and school delays. My counts were right on the borderline, so Nurse Cheryl told me to beg the doctor to give me my last dose today instead of waiting a week. Joe told her that we had another box of donuts in the car--we could try bribing Dr. L with those. [grin]

When Dr. L got in and saw me, she agreed that I could have my last dose today and a shot of Neulasta tomorrow. I will see the radiologist to touch base with her, and start radiation about two weeks after today.

After radiation, I will come back to see Dr. L and she will start me on five years of Tamoxifen. After that is done, I will be on another drug for five years. My greatest risk for getting cancer again would be in the next year or two. My scans all looked great, however, so she doesn't see any spots that worry her.

It is hard to believe that this part is done. Joe kept asking me what I wanted to do to celebrate (besides take a nap) but I didn't want to make any plans until I actually had the IV hooked up. I was worried that my counts would be too low or something else would delay it. We picked up McDonald's on the way home, so that was our celebration dinner. [grin]

Oh, I forgot to tell you the best parts: My new BFF, the nurse-practitioner Virginia, took out my PICC line right after my treatment. Hooray! And when I went back to the treatment room, Joe was there with the boys, and each boy was holding a balloon for me. The nurses all cheered and said goodbye as we all walked out.

Joe and Spiff are at the library to pick up movies for a family movie night. Entropy Boy is playing Hot Wheels Road Race on the Wii. Hank is chasing after the ribbons hanging from the balloons. (Don't worry, I'll cut the ribbons off before I go to bed tonight so the eater-of-indigestible-things cat doesn't eat them.)

This is the song that keeps running through my mind right now:

Oh happy day (oh happy day)
Oh happy day (oh happy day)
When Jesus washed (when Jesus washed)
When Jesus washed (when Jesus washed)
Jesus washed (when Jesus washed)
Washed my sins away (oh happy day)
Oh happy day (oh happy day)

He taught me how (oh, He taught me how)
To wash (to wash, to wash)
Fight and pray (to fight and pray)
Fight and pray
And he taught me how to live rejoicing
yes, He did (and live rejoicing)
Oh yeah, every, every day (every, every day)
(oh yeah) Every day!

Oh happy day (oh happy day)
Oh happy day, yeah (oh happy day)
When Jesus washed (when Jesus washed)
When my Jesus washed (when Jesus washed)
When Jesus washed [hits high note] (when Jesus washed)
My sins away (oh happy day)
I'm talking about that happy day (oh happy day)

B-B-Brr! It's C-C-Cold!

The boys and I woke up to 2 degrees outside. Inside, it is 63F in the kitchen. The thermostat is set to 68F, but the furnace is having a hard time keeping the main level of the house at that temp. Upstairs is warmer because, of course, the heat rises to go up there. Plus, we had warm-heat vaporizers running in bedrooms last night to help with our colds.

I'm cuddled up on the couch with a blanket (and seriously considering going to get another one) and drinking a cup of coffee. Hank is curled up in a ball, yet again. I can tell how cold he is by how tightly he curls up.

An update on my grandmother: the Lord released her from her pain last night and took her home. Please keep my mom and her siblings in your prayers. They are expecting the funeral to be on Monday, with internment in the spring (the ground is very frozen up in northern MN). Hopefully I will be able to go to the internment service then.

My internet keeps going in and out. I don't think things in CT are built for this kind of cold! We are below average temperatures for our "planting zone" right now.

Hot Baths and PICC Lines Don't Mix

Hot baths and PICC lines don't mix.

I'm just sayin'. :-/

The on-call nurse was pretty nice about it though. She was in and out to change my now-wet dressing very quickly--she even left her car running outside.

I think I'll stick to showers. . .

I'm Tired

I'm tired. That's nothing new, right? Except I didn't do anything all day. I literally sat on the couch and ate bon bons. Well, they were Hershey's kisses, but same difference. I did get off the couch at 3:30 pm to make chicken and homemade noodles, but that really shouldn't exhaust me, should it? Bah.

I went for my CBC (complete blood count) yesterday, and my numbers were high enough that I didn't need a Neupogen shot. I think my numbers were ok because I have a cold and that is stimulating my bone marrow enough, thank you very much. On the bright side, I don't have to go back until Tuesday, when they'll do the counts again to see if I'm good to go for my last chemo. I'd do a happy dance, but I'm too tired. Yawn.

They changed my dressing on my PICC line at the appointment yesterday, which means an IV nurse didn't need to come to our house today to do it. I have to flush the line yet today, and then I'm done with it until tomorrow. I did manage to wrap the PICC line area with Saran Wrap and tape all by myself yesterday so that I could shower. Go me!

A Shower is a Wonderful Thing

One drawback of the PICC line is that it is hard to shower. It can't get wet, so I've been sticking with sponge baths for the most part. Tonight though, Joe wrapped my upper arm in Saran Wrap and taped it down so that I could take a nice, hot shower. It felt sooooo good. Afterwards I flushed the PICC line again, like I do every day. So far it hasn't given me any trouble.

I still ache from the Taxol. I took Percocet this morning, and then waited until after the boys were in bed to take it again. I'm glad I can stretch it out (it only lasts 4 hours), but by the end of the day I'm trying really hard not to whimper. It's harder to distract myself from the pain at the end of the day.

As I'm typing this, Joe is doing yoga with the Wii Fit. He does the yoga regularly to stretch out his back. He says it really helps him sleep at night and get going in the morning. I'm watching him do all the stretching with envy. I don't want to pull at where they sewed me up after my port removal, nor do I want to loosen the dressing on the PICC line. Plus, I'm a little unsteady on my feet with the pain and the numbness in my toes. The last thing I need to do is attempt the Palm Tree pose and go down like the loggers are coming through. Soon though. Soon! I want to be able to stretch as well as Joe and the cat do.

On a much sadder front, my grandmother has been moved to palliative care. The doctors are just trying to make her comfortable at this point. She has been in and out of the hospital since her gall bladder surgery and has never really bounced back. She has pneumonia and her blood pressure is all over the place. She has not been eating for a while now. She was born with only one kidney, and that one is down to functioning at 12%.

The family has gathered; the pastors have met with her. I'm 1800 miles away and still on post-chemo medication for pain. I'm not sure my oncologist would even let me anywhere near an airport with the way my immune system is at the moment.

I feel so bad for my mom. She's the oldest surviving child, but my grandmother has always been the great matriarch. It has to be really hard for my mom right now, and I think it would help her for me to be there. [Sigh] This is the first thing in a long time that cancer has *stopped* me from doing.

Three Days Post-Taxol: Today is Pain Day

Ugh. I slept well, but as soon as I got up I knew today was going to be pain day. I got the boys off to school easily because I laid out their clothes, backpacks, and snacks last night before they went to bed. As soon as I got home I took a Percocet. It will wear off before I have to pick the boys up again, so I will be safe to drive them. Meanwhile, the Percocet helps me be able to do things like walk up and down stairs without wanting to sit down and cry. Not that I'm going to be walking much of anywhere. I'm going to take a nap until noon. Once I have the boys home again at 3 pm, I'm going to take another Percocet and spend the rest of the afternoon/evening on the couch.

On the bright side, tomorrow should be a better day.

Joe Finds a Billing Error # 1

So far, we've had very few problems with the bills and insurance. The doctor's offices know how to submit proper bills and Connecticare has been paying them promptly. That doesn't mean that mistakes don't happen, so it's important to review everything before you pay it. Here's one problem I recently uncovered.

Two weeks ago, the radiologist's office sent us a $279 bill for a July visit. This surprised me: why would I receive a bill 5 months after the service was rendered? I know Connecticare paid the bill--I reviewed it last year, around the time I did my first financial post.

Moreover, I couldn't understand the charges on the bill itself: the debits and credits netted out to zero, yet the bill showed a balance due. Where did the charges come from?

Connecticare's website provides a complete claim history, so I compared the bill I'd received to their transaction history. Tracing the history, it looks like Connecticare paid the claim and later denied it (perhaps on an audit review?); it was then resubmitted and paid by Connecticare. Somewhere in the process, the radiologist's office generated our bill for a "phantom" balance of portions of the charges.

I called radiologist's billing office and the clerk quickly reviewed the bill, told me it was an error and not to pay it. I'm glad I called! Had I paid the bill, I would have had a credit-balance with the radiologist until they eventually reconciled their books and refunded my money. Right now, I need the use of that $279a lot more than the radiologist does.

Always, always, review your bills and make sure you understand them before you pay!

PICC Line is IN, Plus Chemo Today

Joe and I dropped the boys off at school 5 minutes early this morning and headed up to St. Raphael's radiology dept. to get my PICC line inserted. The only delay was that they had an extra "s" in my last name and needed to change it on all my paperwork. Everyone sticks an extra "s" in our last name!

The PICC line went in smoothly and easily. It hurts a bit because it is in the underside fleshy part of my upper arm. There are stitches to hold it in place and it is all bandaged up. I'll be taking Percocet tonight because between the PICC line and the port removal wound, it is going to be hard to sleep. I've had a difficult time sleeping already because of the port removal wound, but at least I was down to Tylenol for the pain.

So far, I liked the port better than the PICC line. I'm going to have to wear button-down or zippered clothes to get my sleeves over the tubing; there goes half my wardrobe.

We drove directly to the oncologist's office and the chemo room after the PICC line placement. Joe got me settled and then went to the deli to get me a muffin for breakfast. I knitted a bit, then dozed for a bit, and then it was time for lunch. Joe went out for that too--McDonalds! I dozed a bit again. Those chairs are really uncomfortable some days. They recline, but you have to put backwards pressure on them to keep them in the reclining position. So if you really fall asleep and relax your legs, your back comes flying forward. Can't you just imagine me launching off my chair one day?


Today's chemo was the second to the last one. After the next one (or maybe before?) I have to meet with my radiologist at Yale as well as my plastic surgeon. I'll also get the PICC line removed after the last chemo.

I'm seeing the light at the end of the chemo tunnel. But I'm as tired as a runner near the end of a marathon.

No Chemo Today, But the Port is GONE!!!

Well, the oncologist wasn't happy with the tegaderm idea. She canceled chemo for today (which helped the nurses--they were running short on Taxol today) and got me into a different surgeon at my surgeon's practice. I saw Dr. Z at around 1 pm today and she took the port out in the office. She said once they are exposed to air they should really come out. Oh, and the whole scar splitting thing is actually not that common. Just another way in which I am special. [grin]

I thought that the port would just pop out when Dr. Z finished opening the scar, but it was held in there well by scar tissue. She really had to work to remove all the scar tissue in order to get it out. It is good to excel at something, but growing scar tissue wasn't really on my list of things I wanted to be good at.

Since I'm so sensitive to tape adhesives, she stitched the wound together and then put on surgical "superglue." It goes on clear and then dries purple--just the opposite of Elmer's Glue Stick. The boys are fascinated and repulsed by the result. They've each asked to see it several times.

I'm taking some of the Percoset I already have for the pain and using ice for the swelling. I'm still on the Keflex and so will continue that in case there is any low grade infection going on.

On Tuesday I'll go to St. Raphael's radiology dept to have a PICC line installed. Then I'll go to the oncologist's office to have a chemo treatment. That bumps my final treatment back about 5 days. I'm too drugged right now to be more than mildly disappointed by the delay.

Spiff's funny comment for the day: "One good thing about chemo--you don't leave any hair in the bathtub!"