(Sigh) How LOW Can it GO???

I got my white blood cell count checked today. I am at 1.7; that is LOW. I had my third shot of the week to try and kick my bone marrow into production. I have another round of antibiotics to take to try and help my immune system. I have to take *another* Neupogen shot tomorrow. If it works, I will have bone pain.

I am allowed to go to Tigger's house and meet up with MA'AM, Lizzytish, and Java Junky. I am NOT allowed to eat any fresh fruits or vegetables. :tears: Everything must be well cooked; no cold cuts or soft cheeses either.

Death by deli meat. Suicide by salad.

I'm tired. And I'm not even half way through yet. At least Pad Thai is cooked through.

Getting Ready for the Weekend

I'm taking longer between updates. I'm sure you all are just hanging on my every word, huh? [grin]

Joe was gone this week for a conference in Gulf Shores, Alabama. He left on Monday and returns tonight. I have been "single parenting" this week, including taking Spiff to the doctor on Tuesday. The doctor spent a lot of time listening to his chest; I think he got my bronchitis. He was home from school on Tuesday and Wednesday, and returned today. He has been on antibiotics (the Z one--he's allergic to amoxicillan) since Tuesday and the cough seems to be getting better quickly now that he is taking them.

RP stopped by on Tuesday with a meal (amazing pork medallions with cranberry chutney and some yummy roasted potatoes) and LH brought Entropy Boy home from school for me that day. Then LH brought fresh bread and split pea soup to our house today. Add that to the great chicken tetrazinni that MB handed to Joe on Sunday, and I have been well taken care of in the food department this week. And I am so glad--I have been tired this week.

There really wasn't anything else that people could help *do* this week. Spiff couldn't go to Kid's Club at church because he was sick, so we had to turn down offers to drive the boys there. The things that were wearing me out this week were just life things: emptying the dishwasher, making sure the boys' backpacks were ready for school, trying to keep a handle on the mail and the steady supply of paper that the boys bring home. On top of that, Spiff was sick and sometimes needed help in the night because he was coughing. I just don't have the energy I had at the beginning of this.

I drive the boys to school and come home and take a nap. I get up and do a bit around the house and then go and get them from school. I monitor homework and then take another nap while the boys watch a movie or play on the Wii. Then it is time to make dinner, get stuff together for school the next day, and herd the boys into bed. Once they are quieted down, I go to bed myself. The next day, it starts all over again. I miss having Joe around to help. I'm glad he's coming home tonight.

Saturday Update

I made it through without a migraine on Thursday. Hooray! I've been napping a lot more this round. I've been a slug all day today, and plan on doing the same tomorrow, in the hopes I will have more energy on Monday and Tuesday.

I've been taking the Compazine (anti-nausea med) more this time around. That helps make me sleepy as well. I've found that while I can't knit in my sleep, I can do it while I'm half asleep. I got the base portion of a BrainMonster hat done in about 4 hours today. I just have to put on the teeth and the ear flaps.

It was drizzly outside for most of the day today, so we all had a lazy day. Entropy Boy carved a pumpkin that he got on a field trip at the beginning of the month. We roasted the pumpkin seeds at EB's request. They were good! It was the first time I've made them that they turned out right.

Spiff found that the Pumpkin Fairy (aka Mr. Mike from across the street) dropped off a few wee pumpkins on our front steps. They will be decorations because they are too small to carve. I love having pumpkins around the house. I love autumn. I wish you all could see what we see when we drive around town. The colors are just stunning and the views around every corner are just incredible. I feel so blessed to live here!

Third Chemo is Done

My counts were 13 today, which is a good number. I was good to go for my scheduled chemo. When my oncologist told me the number, I said "Yeah! I get to eat a salad today!" She responded "It's the little joys in life that keep us going, isn't it?"

I have been getting migraines the night after chemo. The doc offered to give me a 1/2 dose of something like Valium to see if that would help. (I can't remember the name of the actual drug right now.) So far, so good! It makes me pretty sleepy. Joe asked as we were leaving if I was "able to operate feet." I could walk, but driving was out of the question.

We got home, and a short time later LH delivered the boys and some dinner for us. She is an amazing friend, and I appreciate her as a gift from God. I made sure that all homework was done and put into backpacks for tomorrow, and then I went and took a nap.

So, round three of the poisonings is over. I finished a hat I was knitting (not for me this time--a Christmas present) and then played Word Jong on the DS.

Woot! Ka-ching!

My counts white blood cell counts were 2.4 again yesterday. And I have bronchitis. My voice sounds like Kathleen Turner's. I'm on Avelox for the bronchitis, and had to have a 4th Neupogen shot today.

Good news on the shot front though! I asked the nurse if I could administer them myself. We pay a $45 co-pay each time I walk in for a 5 minute shot. Ouch! The nurse checked with the doctor and left me a voice mail saying my prescription for Neupogen is waiting for me at my local pharmacy. They called it in already! It will be a $30 co-pay for a box of 10 shots. Compare that to $450 I would be paying for 10 office visits to have them give me the shots. They'll walk me through administering myself the first one, but don't anticipate me having any problems at all with doing it myself.

I saw the radiologist for the first time today. It was mainly a meet and greet, but I was there for nearly 2 hours. It sounds like they are thinking 5 weeks of radiation treatment instead of the 8 weeks I had initially heard. Three weeks less sounds great to me! The doctor also wants me to have the reconstruction surgery before the radiation. I need to meet with my plastic surgeon and discuss all the options with him. I'm beginning to toy with the idea of not having implants at all. . .

I Saw a Couple of Double-Takes on Friday

When I go to pick the boys up from school, I don't wait in the "van line." Entropy Boy is in K and gets out about 10-15 minutes before Spiff is released. I park the van (not an easy feat--the parking lot is packed!) and go get EB. We get some time to quietly talk about his day before his big brother comes bursting out of the building, talking a mile a minute.

On Friday, for the first time, I did not wear a hat. I had on black boots, blue jeans, a red turtleneck, and my black leather jacket. On my head, I wore a black bandanna, biker-style. It is pretty obvious when I wear a bandanna that I have no hair underneath. I thought it was pretty funny the number of double-takes I saw. A bald woman in leather is not something one sees every day at school!

Spiff was not phased at all. My head was covered and that is his only concern. He is getting used to seeing me without a hat or bandanna at home. My baldness doesn't embarrass me and I hold my head high.

I wonder what will happen if I wear my red wig? [grin]

Hooray for Cheap Gas!

On the way to get some Mucinex to quiet Sandy's cough I found gas for $2.65 at BJ's. Compared to the peak prices of about $4.25 we were paying earlier this year, this will save me about $26 per fill on the van and about $16 on my car. That's enough for a copay or two :-). I'm hoping these prices continue for a while because it takes about a gallon of gas to take the van to YNHH, so we'd have been looking at about $45 a week in gas alone to go for radiation this winter.

This is the Cough That Never Ends, It Just Go On and On, My Friends

Well, I'm feeling much better than I did on Tuesday. If I go to bed when the boys do, I can go the entire day without a nap. I'm not doing a whole lot during the day, but at least I don't *have* to take a nap.

But this lingering cough is driving me crazy! Between the Neupogen shots that lower my resistance (in order to kick my bone marrow in to high gear producing white blood cells) and my yearly fall allergy extravaganza, I have a lovely hacking cough. Robitussin is my friend today.

I'm thinking today will be filled with Jane Austen movies, lots of tea, and knitting. My boys are getting tired of Jane Austen. "Are you watching Miss Woodhouse again?" It is a good thing for them that the weather is fine, if a bit brisk, and they can play outside. They both also have some homework to do for the weekend, so it will be easy to keep them busy.

I have been doing a lot of knitting lately and will likely be making many of our Christmas gifts for extended family. Since everyone else lives in Minnesota, hats and scarves are always in good order. I have some angora in my yarn stash, so they won't be scratchy, ugly things either. We'll see how many I get done!

Good heavens, the town's 9 am whistle just blew. My boys have been up for 2 hours and haven't had breakfast yet. It's time to go be Mommy again.

I've Come to the Conclusion that Tuesdays Stink

At least the Tuesdays after chemo stink. Badly.

Yesterday was a bad day. A "I want to hide under the covers and never come out again" day. I got the boys to school, came home, and took a nap. The housecleaner came (God bless L and her mom!) and I napped while she was here. I picked the boys up from school and napped again. And then I went to bed at 7 pm after taking migraine medicine.

Next time, I'm having someone pick up the boys from school on the Tuesday after chemo. I just can't do it. The whole day is a mess of neurological craziness (tingling, numbness, etc.), fatigue, and acid reflux. I've been taking Prilosec, but it doesn't really start to work until day 7 post-chemo. Day 6 (Tuesday) is the worst. I am now dubbing it "Stay in Bed Day."

I had my shot of Neupogen today at 8:30 am. Karen, my favorite nurse, gave me a hug when I said I'm tired of having a good attitude. I'm sure I'll rally again, but for now? Cancer sucks.

Whew! I'm tired!

Well, I'm much more tired this round.

On Saturday, a New York friend texted me that she was in our town picking apples. Entropy Boy and I met with S and her family to pick apples. We got some *great* apples, had a wonderful time, and then I went home and took a nap for two hours. ::yawn::

I still ended up in bed by 9 pm and slept straight through for 8 hours. Hank the Cowcat curled up by my legs and kept me warm all night. He's a good buddy.

Today Joe and the boys went to church and then to IKEA for lunch. I stayed home and rested. Today has been a work for 10 minutes, rest for 20 minutes kind of day. I've gotten some laundry done, some dishes washed, and a bit of decluttering in. But really, I'm not good for much right now.

Joe says he can tell I'm on steroids because I'm showing signs of 'roid rage. My temper is a bit shorter. I'm trying to be patient, but it is hard! Stupid drugs. Tomorrow is the last day for the steroid pill, and then they will be leaving my system again until the 23rd. I should even out again soon.

Tomorrow the boys have the day off of school for Columbus Day. Spiff has a book report and a diorama to keep him busy, and Entropy Boy and I will play UNO or Monster Maker card games. If I have the energy, we may make it over to the pumpkin patch.

What Was That Again?

It is the second day after the second chemo treatment.

The boys got off to school after Spiff made sure a hat was firmly on my head before we left the house. I did get him to concede that I can go hatless in the house. This is the same boy that cried and hid from me when I got my hair cut short when he was 15 months old. Mom is supposed to be unchanging, so I'm sure this rocks his world a little bit.

Chemo brain is in full force today. I have brain fog. I nearly forgot to shut off the stove top. The clicking of the heat element reminded me to shut off the oven. I guess I'll be sticking to the crock pot for a while if I can remember to turn it on and plug it in.

I'm more tired this time than I was last time. But I think that is because they only gave me 1/2 dose of the steroids. I didn't eat like a horse today and had no hummus at all. I'll put up with more tired if it doesn't make me gain 20 lbs. and stay up half the night.

Today I made chicken wild rice soup for dinner and apple crisp for dessert. The boys, of course, won't eat the apple crisp. They prefer their fruit raw and won't eat it cooked. All the more for me! It is wonderful with vanilla yogurt on top.

With my hair only 1/8 of an inch long, I can't really tell how much is falling out now. I don't have any big bald patches yet. Entropy Boy likes to pet my head. He rubs against the grain and giggles that it is prickly. Then he rubs with the grain and says it is soft like the cat. He is dealing with it well.

[yawn] I think I need to get ready for bed. It is nearly 9 pm and I'm beat.

I Scratched My Head This Morning and a Bunch of Hair Came Out

The nurse told me that my hair would start to fall out in week 3. Today is the first day of week 3 and guess what! The fallout started today.

I went to my chemo appt and everything went well there. The doctor told me the red sunburned look I got last time is from the steroids. They only hit me with a 1/2 dose of steroids today, and she is having me ramp down instead of just stopping them on day 4. Hopefully that will help the raving hungries, the sunburned look, and the sleepless nights.

We got home about 15 minutes before the boys did--LH picked them up from school and brought us dinner as well. I asked her if she had ever run a clippers before. She had, but had been banned from ever doing so again after she cut her son's hair. Since my hair is going to fall out, it doesn't have to look perfect and she agreed to cut it. Want to see the pictures? (Of course you do!)











You can still see my little round bandaid from my port access today. Spiff says my face looks fatter without hair. Gee, thanks sweetie!

Oh, and my oncologist has heard of the henna tattoos, but has never seen it. She's ok with it since we are getting the henna off a site where other chemo patients have used it. She said to make sure to let her see it when it is done because she thinks it is a cool idea. [grin]

Neupogen Aftermath

I've had three shots of Neupogen in five days. My long bones ached last night, and Advil wasn't touching it. I took a Vicodin and went to bed at 9 pm. I dreamed I was being chased by giant syringes with hypodermic needles for heads. [shudder] I'm glad I'm done with Neupogen for the rest of the week.

The Cost of Cancer: Part 1- Pre-Mastectomy Care

It looks like all the bills from the period before the surgery are now finalized with our insurer, Connecticare. I should now be able to give a reliable total of the costs of medical are from the time Sandy was diagnosed on July 3, 2008 until the surgery on August 27, 2008.

So far, here's what the billing looks like:

A few notes:

• The physician's billed charges are high because the biopsy was done during an office visit to the surgeon. All of the Doctors' visits are "specialist" visits and subject to a $45 copay with Connecticare.
• Lab costs include blood work and pathology on the biopsy tissue. Connecticare covers them without a copay.
• Radiology and imaging costs included all the scans and imaging, they have a $75 copay.
  Pharmacy costs are mainly the prescriptions we picked up before the surgery. They're high because there's one $315 bill for a chemo-related drug (it's over $100 a pill).

So far we've had absolutely no problems with the processing of our claims by Connecticare and all of the institutional billing has been correct.

I'm Beginning to Feel Like a Pincushion

I had another shot of to boost my white blood cells yesterday. But my counts were only 2.4 before the shot. (No, I don't know what 2.4 means, other than it is a low number.) So, I had to go back today for another shot. Today's white blood cell count was 6.1 before the Neupogen, so I am now in good enough shape for my second dose of chemo on Thursday. I didn't think I would be so antsy to make sure I got that next dose, but I have a life to live and plans already made for my "good" weekends. I want to LIVE with cancer, not merely exist with it.

Hat #2 is Finished!!!

I finished up hat #2 over the weekend while my parents were here. Of course, I didn't think to have anyone help me take a photo then. No, I had to think of it when there was no one to help me but the cat (and he's not helpful).

So, excuse the bad photo. This one was made with 3 colors of Rowan's Wool-Cotton. I knitted it on larger needles than the blue one because I wanted it to be more of a bucket style.

Only a week or so left, and I will no longer have hair!

Things You May Want to Know For After a Mastectomy (a list for patients and caregivers)

I started this post a few weeks after my surgery and decided to finish it up today. Some of it is information I really wish I wish I had known.

Bathroom issues:

Assistance—I didn't need someone to assist me in the bathroom. I needed someone to help me get out of the bed because I wasn't allowed to push myself up with my arms. Being pulled up by your arms is also painful, so the best thing seemed to be someone pushing from behind my shoulders. My abs got quite a workout. Your assistant also needs to hang around to make sure you don't fall over in a drug-induced stupor and to help you back in bed.

Toilet Paper—it needs to be in reach. What is easy to reach before surgery is not so easy to reach afterwards. Oh, and tearing off the proper amount can be painful. Those little perforations between the sheets of tissue suddenly get amazingly strong.

Laxatives—take them. The effect of the pain medications is way stronger than the effect of the antibiotic. Keep taking them until you've ramped down the pain medications. If the nurses won't let you take some from home, request them if you are in the hospital for any length of time.

Washing up—Reaching for the faucets to turn on the water is painful. The push-in-the-lever soap dispensers at the hospital are really painful because you have to reach and push at the same time. At home, move the soap dish to near the edge of the sink so you can grab the soap without passing out from pain. The same goes for the hand towel. It will hurt to bend and reach forward to rinse your hands. Have plenty of hand sanitizer around.

Drink lots of water—it will help the laxatives, and will flush out your system so you don't get an infection after the catheter. Plus, if someone asks if you have been up at all today, you can talk about all the times you got up to go to the bathroom.

Wound dressing supplies:

Gauze bandages—my plastic surgeon recommended I buy two boxes of 4”x4” gauze bandages and a tube of Neosporin. I would recommend doubling that amount. Make sure you have them on hand because the drug store shelves can be mysteriously empty of things like that when you really need them. Other sizes of pads are useful for providing extra padding on sore spots where your compression bra rubs or to provide extra compression under the bra if needed.

Scissors—have a sharp pair and sterilize them the best you can. My drain tubes were the most painful part of the dressing process, and cutting a slit into a gauze pad and putting the tube in the slit (to have gauze all the way around the tube) helped me be more comfortable.

Alcohol wipes—we used these to clean the spouts of the “grenades” each time we emptied them, and for other general clean up purposes.

Sleeping:

Location: I had to sleep on the couch at first—the bed just wasn't comfortable. My husband bought me a wedge pillow that was a 45 degree slope. Laying flat was just too uncomfortable.

Pillows: I had a LOT of them. My favorites were the therapy pillows—the tube shaped ones with micro-beads in them, and a neck pillow with the same filling. You need pillows that you can squish to form where you need them.

Sleepwear: I bought some double front-closure hospital gowns online (pretty pink floral ones) for right out of the hospital. They were easy on, easy off and I didn't mind anything that got on them. I pinned my drains right to them and didn't worry about pin marks, etc. Plus, when you are wandering around in a hospital gown you remember that you aren't supposed to be doing much of anything besides healing.

Position: If you are a stomach sleeper (I am) you are out of luck for several weeks. More than six weeks out, I still can't sleep on my stomach.

Weekend Update

My parents arrived on Friday, so I haven't been online often enough to update.

Friday I had another injection of Neupogen. I had only slept about two hours the night before, so it was kind of a rough day. Joe went to pick up my parents at JFK airport and then went to go pick up the boys. We had pizza and then the boys and I went to bed early.

Saturday was spent as a work day. Joe and my dad took off the trim around the garage door because Joe knew the wood underneath was rotting. My dad assessed the situation (he knows carpentry well) and decided it was a job too big for them to handle reasonably. So Joe went across the street to see if our neighbor, who is a mason, knows a good carpenter. The neighbor wasn't home, but his new roommate was. His new roommate is . . . a carpenter. (Isn't God amazing?) My dad talked with him and says he is confident in the guy's ability to do the job--he knows his stuff. So Joe has a supplies list to fill today and the carpenter will start the work this week. Check one big item off the to-do list.

While the guys were tearing off the outside of the front of the house, Mom and I were in the back putting my square foot garden beds to rest for the winter. I have a pop-up greenhouse that will go over one garden bed. I'll plant some lettuce seeds in there and have enough time left to get in one more crop of baby greens yet this season. The bulk of the garden debris went in the compost bin, and the rest went into the compost pile in the woods. Check another item off the to-do list.

Joe decided that since they couldn't do any more on the house exterior, it would be a good time to put up the ceiling fan in the living room. We bought a new Hunter fan in June (the only brand I like--they are so quiet!) and the box had been sitting in the basement. Joe and Dad made quick work of that project, so another item was checked off the to-do list.

We had tacos for dinner, the boys had baths, and then the adults got to hang out and talk on Saturday night. I snuggled under a knitted prayer shawl that Mom had brought from someone from the church I grew up in (Thanks ML!) I'm going to have to fight the boys for the prayer shawl--it is soft and wonderful and they love it too.

This morning we went to church. I was soooo happy to be there. I miss it when I can't go. KL handed me the softest bundle before church--she had knitted some socks for me!! They are a beautiful dark green and are long and lacy. They are *so* nice!

Now the boys are playing Mario Galaxy on the Wii and my dad is watching them. Joe has just arrived home from Walmart and Mom is playing solitaire on the laptop. It is a quiet, rainy Sunday. Life is good.

Pretty Near Normal

So today was pretty near normal, or at least new normal. Prilosec took care of any reflux. I slept at least 6 hours before waking up, and was able to get back to sleep again. I didn't need a nap. I count that as a good day.

LH came over and brought dinner for us to reheat. It is a double blessing because she doesn't have a kitchen right now due to a remodel. Making dinner was harder for her than it would have been for me! She made an amazing beef burgundy in the crockpot and a loaf of bread in the breadmaker. Add some carrots steamed in the microwave and we had a wonderful meal tonight.

Even better was her company. We had a little lunch, some green tea, and then sat and knitted and talked, and talked and knitted. I had *such* a wonderful time and I'm feeling happy and blessed. What a great day!

Neupogen Day

Today I got a shot that tells my bone marrow to kick white blood cell production into high gear. It's my oncologist's standard procedure when you are on high doses of chemo. From what I can glean from the info sheet, it's derived from e. coli bacteria. Lovely! I thought I wasn't supposed to eat some raw fruits and veggies because of the risk of e. coli, and now they are giving it to me on purpose. Oh well. As my SL friend Sooz said "Die, cancer! Die!"

The main side effect of Neupogen is bone pain, which I'm feeling a bit in my back. I guess it is better than feeling it in my rib cage and sternum, which is the other option. Advil is taking care of the pain pretty well. The nurse said Tylenol would not likely touch it. I love it when nurses are open and practical--it is so much more helpful to know what to expect and what options I have to do something about side effects.

I also found out that over the counter antacids like Prilosec are the best solution to the reflux I've been having. So now the reflux is coming under control as well. I'm starting to feel almost normal again. Sort of.