New Treatment Course

Since the Taxotere, was so taxing on my digestive tract, the oncologist has changed up the course of my chemo. I will be going every week for the next nine weeks, instead of once every three weeks. The dosage of Taxotere will be lowered and the Cytoxin is changed to Carboplatin. I went yesterday for treatment and I'm feeling pretty well today. Just a slight headache and some intestinal grumbling. And water tastes weird again! This is the worst part for me as I am usually a big water drinker and I need to keep hydrated. I set an appointment for tomorrow to get rehydrated, anticipating that first weekend where I began hallucinating from dehydration from my first chemo. We'll see how it goes.

I had a good week and a half of feeling absolutely normal! I hope that the lowered doses will keep me on a more even keel--will I feel slighly lousy all the time, getting worse every week as the drugs build up in my system over the 9 weeks? Only time will tell...

Cassie's Sweet 16 went very well...tons of dancing, good food, and great company. Thanks to family help, we had invitations made by my sister-in-law Laura; the video montage made by my brother-in-law Jeff and my niece Samantha; my sister-in-law Kim brought Cassie to get her hair, makeup and nails done. We had a great candle lighting ceremony with a gorgeous sandcastle made by our friend Kim (see picture above).

Complications

Tuesday morning-May 5th, I woke up with lower abdominal cramping. I had a bit of that Saturday morning, so I was thinking that maybe I was getting dehydrated again. After my second trip to the bathroom in a mere half hour, I looked down to a toilet full of bloody diarrhea. After the 3rd and 4th time over the next hour, I figured it was time to call the oncologist's office. The nurse practitioner in charge told me to go to the emergency room. I opted for Mather Hospital, knowing that most of the oncologists have privileges there.

My mom brought me as Dave was alone in the store that day. They put me in a private ER room, which was kind of nice. It even had a T.V. and one of the nurses went right off to get my mom a chair to sit it. They did a CT scan and found nothing in the intestines; They DID find a lesion on my pancreas though and told me they would follow it up with an MRI. They admitted me at 3:30 that afternoon. I got into an actual room at 10:00 pm.

Wednesday, May 6, 2009. Besides bloodwork, blood pressure, and temperature, no tests were done at all... except for a test for C-Def, e-coli, salmonella, and other intestinal type issues (some kind of super-bug). The diarrhea continues all day and they have plenty of samples to work with. All the tests come back negative.

Thursday, May 7, 2009. Diarrhea continues and the blood is back...ugh. Today, I'm on a liquids-only diet to get ready for a colonoscopy tomorrow. This is really no fun at all. I'm beginning to get quite sore from all this bathroom going. They take me for the MRI around 3pm. Then, when I return, they start me on te prep for the colonoscopy which will be done on Friday. The prep involves a 4 liter (about a gallon) jug of a clear, liquid that foams when you pour it into a glass. It tastes a bit like the bottom of a margherita--salty and a bit sweet. Not bad for a sip, but a whole gallon? ALSO...how much more can they really expect to get out of me????!!!! After drinking a quarter of this jug, I head, yet again to the bathroom. 20 minutes later...off to the bathroom again...now it's clear liquid coming out, but I still have 3/4 of a jug to polish off. My friend, Jen visits as I guzzle down until I'm halfway through. After she leaves, I realize I just can't take any more of this torture down below. I retreat to my bed and cry like a baby. The nurse comes in and I tell her how sore I am. She gets me Desitin and it works great...helps to cry like a baby! She tells me to take a break from drinking and I do. About an hour later, I'm ready to try again. I drink another quarter and she tells me I can stop because now she's going to bring me 4 pills that will help me go!!! I ask if she's kidding and she produces 4 tiny hot pink pills. I'm up every hour, rushing to unplug Jose (my iv pole) from the wall, and running to the bathroom. Oh joy!

Friday, May 8, 2009. The nurse comes in around 7 am and hesitatingly informs me that my colonoscopy is scheduled for 2 pm. One of the onologists comes in and I ask her results of the MRI. She says the lesion on the pancreas looks like a cyst and I'll have to follow up in 3 months to make sure it's unchanged. She also says that the chances of me having breast and pancreatic cancer would put me in the World Book of Records-it would be that rare. Whew. Around 10 am, I get my first roommate, AnnMarie. 2pm rolls around and I go for my colonoscopy, which they knock you out for. Best sleep I've had in days! They got halfway into the intestines and had to stop because my intestines are twisted. Now, I have to go as an outpatient to finish by them doing a virtual colonoscopy...whatever that may be! The only thing they find are some internal hemherroids. They tell me to eat a high fiber diet, yet according to the oncologist instructions, when you have diarrhea, you shouldn't eat high fiber! Go figure.

Saturday, May 9, 2009. After clearance from the gastro and onco docs I'm ready to go home at 11 am. Yippee. Dave and I do some mothers day shopping and then I'm home resting for the remainder of the day.

Sunday, May 10, 2009. Happy Mother's Day! It was a gorgeous sunny day. Cassie had a soccer game and then we were off to Marianna's Baptism followed by a luncheon at the Chinese Buffet. I felt wonderfully normal and energetic until about 5 pm and then I had the sudden need to go rest. Cassie and I headed home and took some pics of her in her Sweet 16 gear. We uploaded the pics onto Sam's Club website and ordered a poster for her friends to sign.

CHEMO SUCKS and then you start to feel better!

Okey Dokey...Here goes. It is now Sunday, May 3rd. I feel as though I have lost a couple of days--they're kind of a blur in my mind. I finally feel up to sitting and jotting down some ideas about how the first treatment went.

Wednesday, April 29th: Arrived at oncology office at 9:15--had taken steroids for the past 24 hours to offset any kind of reaction to the Taxotere they would give me later. After doing a blood count (finger stick) and adjusting all the meds they would give according to the blood counts, they brought me in to the chemotherapy area. There are about 8 rooms, each with reclining chairs and regular straight-back chairs (for those poor suckers who don't get the luxury of receiving chemo in a comfy chair). The rooms have anywhere from 1-4 recliners, in case you want to make it a 'party atmosphere' with the other chemo patients :) Dave and I picked a private room for the first time--it even had a t.v.
Barbara, one of the nurses, started the i.v. line--I chose not to get a port, since I will have only 4 treatments. She put on bags of: Pepcid, Benedryl, and another steroid. Each of these dripped separately and then reverted back to the regular sodium cl. drip. Then, around noon they began the Taxotere. With Taxotere, they check on you every 15 minutes. Well, about 30 minutes in, I started having difficulty swallowing--it would take me a good 10 seconds or more to get my throat muscles to figure out how to swallow. I told the nurse and she stopped the drip, consulted with another nurse, and went to get more Benedryl and another steroid, and the doctor. Less than 10 minutes later, I could swallow with no problem at all. So they started the drip again--very slowly this time! It took about 2 1/2 hours for this bag to finish. Thanks to Benedryl, I slept through most of it. Last came the Cytoxen, which only took about an hour to dispense. We left around 4 p.m.!
I felt pretty good the rest of the evening, but got a bit achy around bedtime. No nausea, just a headache. Tylenol worked just fine.

Thursday, April 30, 2009: Woke up, wide awake at 5:30 a.m., not quite sure what to do with myself. I usually don't get up for school until 6:45, so this was weird for me. I guessed it was the effects of the steroids. I decided, as long as I was feeling well, I might as well get things accomplished. So I got ready, took Cassie to school, and went up to my own school--arriving at 7:55! I got 'green sheets' for photocopying next fall's packets that I brought home to keep me occupied. I got paperwork together from the doctor that had to go to human resources--and went to h.r. to drop those off. I went over to do my banking, and then headed to Home Depot to pick up contact paper. Next, I was off to Estelle's to pick up Ali's prom dress and then it was over to Toyota and a free car wash. This was all done before noon. When I got home at noon, I was officially tired. I slept, and then started feeling kinda lousy. My mom took me to go get my Neulasta shot at 3:30, and I spent the rest of the evening laying around drinking tons of water.

Friday, May 1, 2009: Woke up, bright eyed and bushy tailed at 5:30 AGAIN. This time....after a restless night's sleep. I filled up my Bubba Keg and tried to drink water like I did the day before, but my tongue was so sore. There was nothing on it that I could see, but it hurt. I still kept at the water though. My appetite was definitely starting to wane, and I ate sporadically throughout the day, because I knew I had to. I kept drinking water--it was starting to taste weird though. I also noticed that my tongue was white and fuzzy feeling. Felt a bit more nauseaus all day long, than I had the day before. More of a headache and overall achiness too, oh yeah--and some diarreah (wahoo).

Saturday, May 2, 2009: A nightmarish delusional type of day. I woke up feeling a cross between: a hangover, getting in a car accident, having pneumonia, having a stomach virus, and being on a dizzy ride at an amusement park with a whopping headache. I think that about covers it. I called the oncologists office around 10:30, and they told me to take Immodium (which, I must say, is a great drug), and come in Sunday morning for rehydration. Then I tried downing some water, but it tasted like I was drinking oil. I couldn't feel it on my tongue--neither could I feel hot or cold on my tongue. I kept getting cramps in my lower stomach, and I would go from this weird awake state to a not so restful sleep state. The last thing I remember from Saturday night was brushing my teeth and watching them move around in my mouth. I KNEW, it wasn't really happening, but it looked so weird in the mirror--kinda like a bad Ambien trip. I held my nose and downed some water and tylenol, and went to bed. I slept off and on, waking with lower abdominal cramps and achiness.

Sunday, May 3rd, 2009: The hour ticked by so slowly as I waited to head out to the oncologists office to get rehydrated--every muscle hurt--my legs were wobbling as I was walking to the car. Dave stopped and got me a decaf tea and a roll at 7-11, which I sipped and picked at on the way. We got there at 8:30 sharp, and after a blood count (which was fine), they got me hooked up right away. Within a half hour, I konked out into a somewhat comfortable sleep. Two hours later we were done--my legs were stronger, and I felt human again. Unbelievable what a little rehydration can do for you. The nurse practitioner said for my next treatment, to make an appointment 2 days afterward to come in for rehydration so we can avoid this horror show. I will be taking them up on that offer. Once home, I watched the kids and Dave play wii. Then Dave made me a couple of eggs over rice (exactly what I wanted--I have never wanted that before--go figure). I slept for a couple of hours--in a nice deep comfortable sleep and woke up soaking wet, but feeling great. Now it's about 3:30 Sunday afternoon, and I've had all the energy to actually sit up and write this! Definitely feeling better; although a bit tired now--guess I'll go rest.

Oh, yeah...they gave me a prescription for 'miracle mouthwash'. It's supposed to work wonders on the tongue and throat of chemo patients. Looking forward to trying it out :)

Chemo coming up

This Wednesday, April 29th will be my first chemotherapy treatment. I will be receiving cytoxen and taxotere. Adriamycin would have been thrown into the mix, had it not been for my mitral valve prolapse--adriamycin can cause heart valve problems. Now we wouldn't want that would we? The taxotere will cause my hair to start falling out about two weeks later. I went to a great wig place and have a wig that's the same color as my hair, with less curl. I also got a baseball cap that has hair built into it. It's pretty cute--great for just running out of the house in. I also have some terry cloth turbans that my friend Maureen said are very comfy to sleep with. I'm curious how my hair will come back. Almost everyone I know who lost their hair to chemo had hair come back in curly. Since mine is curly to start with, will it come back straight?

Wednesday also begins my sick leave. My oncologist recommended that I not expose myself to so many germs (elementary schools are notorious for having germs!). So I need to come up with some goals to do around the house while I am out on leave. Granted I may feel cruddy for a few days following each treatment, but I'm planning on feeling good the rest of the time. I figure on a cruddy feeling day, my goal is to get dressed and do one positive thing that day, no matter what!

Grateful

I've had many thoughts lately about how grateful and truly blessed my life is. Having cancer really makes you take a step back and reflect on what really matters in life. Adding in the car accident that Ali and Cassie were in last week, made me reflective once again.

Ali was driving from the second night of Seussical at the high school to Applebees. She had Cassie in the minivan as well as my neice and two of their friends. While waiting to turn left at a busy intersection, a 4 door sedan type of car traveling towards them hit them, spun them 180 degrees and sent them down the road about 50 feet in the opposite direction from which they were traveling. Of course, because she was in the left turn lane, the police report states that when she attempted the left turn, she collided with his car. I find this interesting, since all the damage is to the front of both cars. If she was into the turn, the side of her car would have been more damaged.

Whatever...the part that matters most is that all of the kids were able to get out of the van unassisted. The person injured most had a broken nose, and can't remember the events just prior to the accident (the doctor feels that there is no permanent damage though). My neice had to have 4 stitches to the center of her tongue--almost as if she tried to get a tongue piercing that went awry. Ali has some range of motion issues with her right shoulder, as well as a left knee bruise and difficulty walking; Cassie has whiplash (neck muscle spasms and vertebra is straighter than the normal curve of the neck) and low and behold--scoliosis--with her L5 break, was she never fully x-rayed- as well as a bruise to her left shin, a burn and bruise across her chest where the seatbelt kept her captive. The last person in the van was uninjured-just some minor aches. They were all brought to the emergency room to be evaluated and were all sent home within 8 hours of the accident. The man driving the other car did not leave in an ambulance, and we hope that he's okay. You have to wonder though--where was he coming from, and was his cell phone in use at the time of the accident?


My last radiation appointment is this Monday, 4/6--YAY. Then I meet with the oncologist on Friday 4/10. I'll update this after I know what upcoming events will be bringing.

Low, but not low enough

The Oncotype Dx, although placing me in the low category, gives me a 10% chance of the cancer returning. The oncologist put it this way--'If you take 100 women with your same score, 10 of them will get the cancer back. IF you get chemotherapy, it will cut that number to 5 out of the 100 getting the cancer back. He went on to say that the first time you get cancer is the time to do the most you can to get rid of it completely, because if it comes back, it comes back elsewhere in the body and it is more difficult to treat--and impossible to cure completely'.

He explained another method, an alternative to chemo that is used in Europe. It consists of a series of injections--every 4 months, and taking arimidex as well. I think the injections have three different drugs in them--one of them being a drug that causes the body to go into menopause. If I have chemo, he would give me that one injection before starting the arimidex anyway. I have not been able to find information on the treatment he is telling me about--he says he has used it on about 30 of his patients. I'm not sure if the success rate is the same as chemo, nor do I know for how long the studies have been going on for that method.

I know that I don't want to have the cancer return and have to say, "I wish I would have done chemo the first time around". I will do everything I can to rid myself of it now. SOOOOO, I think that I will be opting for chemo--it will begin the end of April if this is the route I choose. It will only be 4 treatments, given every three weeks. I'd be done mid-summer.

My next oncologist appointment is the first week in April. I will have made up my mind completely by then.

Radiation is 14 treatments down another 19 or so to go. I have a nice tan around my left breast, in the form of a rectangle. It's pretty interesting to look at. I went for my simulation for the radiation boost that will be given during the last 7 days of my treatments. It targets the area of surgery and sends extra strong beams to that area alone instead of the whole breast area. On the way from the simulation in the Setauket area, to my radiation appointment in the Patchogue area, I had a very difficult time keeping my eyes open while I was driving. I think maybe the fatigue that everyone talks about may be kicking in.--or maybe it's just the time change and the full moon that joins us tonight.

Dave is out at his sister, Kim's, tonight. He went out there last Tuesday, to keep her company and help her through the difficult time she's having since Gary's passing. He decided that, maybe for a while, he'll make it a weekly tradition. I think it's great that he's out there with her and he should continue to do so until she feels better.

Physical Therapist Gary will be coming into my school next week to do a presentation for the fourth graders on how our bodies have simple machines inside of them. He's bringing out a couple of samples from Stony Brook Med. Ctr. where he teaches--he's going to show how the knee is actually a three-lever system, with the kneecap acting as a fulcrum. This idea had come up a few months ago, and I thought it was put on the back burner, but when we were starting simple machines, I remembered the discussion. Gary had planned it out for his daughter's 4th grade class at her school, as well. It's always great to have kids see how what they learn today actually applies in the real world.

Oncotype Dx Results

The results showed that I have a low reoccurance rate (from 1-17 is low; I'm a 16). This demonstrates that if I have surgery (already done), radiation, and then take Tamoxifen (or another estrogen/progesterone blocker) for 5 years, I have a low risk of reoccurance. I will see the doctor this coming Wednesday-March 4th to discuss the results more fully and to map out the rest of my treatment plan.

Radiation is going well--although it was canceled today due to the huge snowstorm we're experiencing. We had about 12 inches at 10 am this morning and it's been snowing steadily for the past 2 hours. Snow day--no school--YAY!!! I'm happy to have a day off from radiation as well--my breast was getting pretty sore and I was starting to see a tan line in a square formation around the breast--this is the area they are treating.

This weekend I will be in the city for the The Celebration of Teaching and Learning conference. It's sponsored by channel 13 and the list of speakers includes NY Governor David Paterson and Alan Alda (yes, from MASH). I am looking forward to a weekend of listening and learning. I'll be staying with 2 teachers from another elementary school and there are about 6 other teachers from my district who will be attending.