It is more important to know where you are going, than how long it takes to get there.

Tuesday, June 29, 2010

Chemo Class...

Today I went to my chemotherapy orientation. I agreed to be part of a research study that compares the effectiveness of different types of chemotherapy drugs. The study is nationwide, involving over 4,600 volunteers. I will randomly be assigned one of two different treatments. One of the two treatments is a combination of two chemo medications initially prescribed for me (CA), and the other chemo medication is a drug (Taxol) that is normally used after CA for women with more aggressive cancer. (I think I got this correct.) This trial is not blind, so I will know which chemotherapy drug I will be given. Either drug will only be given over four treatments: every other week for eight weeks. The side affects are similar with both drugs. However, the Taxol appears to have less severe side affects. I decided to volunteer because I believe that the surgeon removed all of the cancer, and either chemotherapy treatment will be effective. I also feel that many women, much more brave than I, volunteered for many other trials that were much scarier than this trial, making it possible for me to become free of cancer.

Unfortunately, my veins failed chemo class. Two infusion nurses - chemotherapy administers - checked my veins today to check if they could find one good enough to take the 2-3 hour IV drip of chemotherapy. Chemotherapy cannot be given via veins inside the elbow -the veins that are normally used for drawing blood, nor can it be infused through the veins in the wrist - the veins that are often used for regular IV drips. So, I must have a port inserted under the skin that will receive the IV and send the drugs to the rest of my body. The insertion of the port will require another day surgery. Yep, another battle scar on my chest. I am beginning to look like the screen on a GPS.

The laundry list of side affects are:
Temporary lowering of white blood cells - I will need to avoid anyone sick or with a cold. This will be difficult since someone in this house is always sneezing or coughing.
Temporary lowering of red blood cells - causing tiredness or shortness of breath. I am half way there already.
Temporary lowering of the number of blood platelet cells - meaning it I get a cut, it will take longer for it to stop bleeding - so much for my new job at Benihana's.
Hair Loss - they gave me a prescription for a wig today. That's one prescription you don't take to the pharmacy. Insurance covers the cost of a wig, but I am going to pass. In this heat and humidity, I would feel like I was wearing a fur hat!
Nausea & vomiting - this is my biggest fear, especially since I was nauseous for five weeks after my surgery. They said that there are a lot of drugs to counteract this side affect, and promised that it shouldn't be too bad. I hope their crystal ball is more clear than mine.
Skin & nail discoloration - gross. I wonder if they can give me a prescription for pedicures and manicures.
Sores in mouth and/or throat - gross and yuck
Urine may turn red - strange
Sensitivity to sunlight - my pasty white Irish/Norwegian skin is already sensitive to sunlight
Allergic reaction to the Taxol - if this happens they give the patient Benadryl. Isn't Benadryl amazing?
There are a couple of rare side affects like heart problems, etc - but I am not going there.

The schedule for these fun and games:
July 8 or 9: Day surgery to insert port. It will probably be at Beverly Hospital.
July 12: Blood Test - I will always go in the day before the chemotherapy treatments for a blood test.
July 13: "Cycle 1" This is what they call the first treatment of chemotherapy.
July 26: Blood Test
July 27: Cycle 2

The two nurses working with me gave me a tour of the infusion area. I prefer to call it chemo corner. I was so disappointed by this area! It looked like a bad emergency room from the 1950's, and this hospital is only a couple of years old! The area is arranged in alcoves containing 4 beds in each alcove, two on each side, with a window in the middle exposing a view of the parking lot. The lighting was harsh fluorescent lighting that made everyone look like they are cancer patients. If I recall correctly, the walls were a pasty, sick yellowish or bluish color - kind of matching the skin color and mood of the patients. Each bed had a standard hospital chair next to it, it's own t.v. mounted on the ceiling, and a privacy curtain that no one seemed to use. This area took depressing to a level that I didn't know existed before today. After seeing the beautiful, tranquil, and almost spa like atmosphere at Addison Gilbert Hospital in Gloucester, with it's rain glass, soothing lighting, beautiful views all the way out the ocean, I was very bummed by the Mass General North chemotherapy treatment area. I mean, very, very bummed and almost depressed. I am staying at Mass General North because of the doctors. After I have my first treatment, I am going to write a letter to Mass General regarding this awfully depressing chemotherapy treatment area, with recommendations on how to improve it. Really, I am.

Maybe my next career will involve decorating chemotherapy centers for hospitals.

Whacky thought for the day...
"If you need someone to do something for you, ask the busiest person." -Agnes McNamara, aka Nana

Tuesday, June 22, 2010

Bob and Mike Are Back...

The fourth week after surgery I decided to do some gardening, aka weeding. I wore my pink gardening glove on only my right hand as a reminder to not use my left hand or arm. I was a sad Michael Jackson imitator as I scooted along the edge of my garden, pulling weeds with only one gloved hand. Last week, my fifth week after surgery, I wore two gloves and did a little more aggressive gardening; transplanting and planting. I felt okay, just a little tired. These last few days I did more grateful dead-heading and weeding.

Yesterday I ventured to the grocery store for some minor, two-bag shopping. The bags weren't too heavy. I carried one bag in each hand.

Last night I paid the price for doing too gardening, too much lifting, too much stretching and too much reaching, too soon. My underarm swelled up to about twice the normal swollen size. My body ached all over, especially my surgery sites. I placed ice under my arm as I went to sleep, hoping to decrease the swelling. When I woke this morning, I discovered that the ice worked, and I am back to my normal swollen size.

My home nurse visited today and was very concerned about the swelling episode. She called Dr. Chief's office and spoke to his nurse about me and my swelling. Minutes after she left, I received a call from Dr. Chief's office. The nurse told me that I was "lucky" and that I am doing too much too soon. Too much? I feel like one spud short of a couch potato. The nurse told me that because I had only three lymph nodes removed, (some women have up to 20 removed,) that the swelling didn't move to the arm - this time anyway. She said that it take 6-8 weeks to recover from this surgery, and I just completed week 5. Okay, I've been warned.

Now, I am back to the one-gloved, sit on my butt and scoot gardening. I need to put a pen back in my left hand and resume my Robert Dole stance. This waiting to recover stuff is the pits. Today, after my little talking to by Dr. Chief's nurse, I was a complete couch potato - complete with sour cream, broccoli and cheddar cheese.

I learned that I have three more rides on this cancer carnival before I start chemotherapy: 1. Chemotherapy Orientation with Dr. Banana Split's nurse - I am guessing that I will learn all the ins and outs of chemotherapy before it begins. (My last orientation was in 1979 - my freshman year at Santa Clara. That was way more fun, and I told a lot more lies!) 2. Heart Scan - Dr. Banana Split ordered a heart scan before I begin chemotherapy. Evidently chemotherapy is not only hard on the hairdo, but hard on your heart too. 3. Physical Therapy - I can only lift my left arm approximately parallel to the ground. This lack of motion is common after a mastectomy and lymph node removal. I need to get my left arm to have a full range of motion for the radiation. During radiation, your arm gets contorted as you are radiated.

I am still fighting this nausea thing. It comes and goes. No, I am not pregnant.

Whacky thought for the day...
Does anyone even use the word "hairdo" anymore? For those of you who don't have a thesaurus, "hairdo" is a synonym for "hair style." Does anyone even use a thesaurus anymore? For those of you that don't know what a thesaurus is: a thesaurus is a book of synonyms - a standard high school graduation gift in the "old" days. It was an essential tool for writing papers in college.

Friday, June 18, 2010

The Early, The Better...

On Tuesday I went to Molly's final Brownie meeting for the year. One of the moms sitting with me confessed that she has never had a mammogram. What?!

A mammogram takes less time than getting your teeth cleaned. And, depending on your flossing habit, it can be less painful. A mammogram takes less time than getting a pedicure. Granted it is not as relaxing, but it is better for your. A mammogram takes less time than driving all the way to Starbucks, waiting in line, and then waiting while they make your fancy coffee drink. As far as I know, very few people have died from from dirty teeth, ugly toes or lack of caffeine. However, too many women die from breast cancer every day.

You - ladies and gentlemen - need to ask your wives, mothers, daughters, sisters, friends, and others that you care about, "When did you have your last mammogram?" Breast cancer affects both young and old. It does not discriminate by age, and you are never out of the woods.

Yesterday I met my new medical oncologist and radiation oncologist, and learned that I caught my cancer fairly early. Would you believe that this is my fourth medical oncologist? First there was Dr. Ice Milk, then Dr. Vanilla Bean, then Dr. Hot Fudge, and now Dr. Banana Split. (Banana Splits are the complete package - fruit, ice cream and chocolate - doesn't get much better than that!) Dr. Banana Split told me that I only need 4 doses of chemotherapy! I will receive the chemotherapy every other week for 8 weeks. The reason I need only 4 doses is because I caught the cancer early. Even thought the tumor was huge, 5.2cm, there were only small amounts of the cancer in just one lymph node. I will start chemotherapy after July 8th. (My mom, dad, sister, brother-in-law, and nephew are visiting July 1-8,) The moral of this story - the earlier you detect the tumor, the better the outcome, and the easier the treatments.

The radiation oncologist, Dr. Dad, said that I will have 6 1/2 weeks of radiation. Radiation is daily, Monday through Friday. I can pick a time between 7:30 a.m. and 5:30 p.m. It will begin about a month after chemotherapy ends. Dr. Dad got his nickname because we spent a good amount of time talking about our kids. He has four children, with one the same age as Riley. We commiserated about having 15 year olds.

Every single doctor that I have met, and who is connected to Mass General, has asked me if I have children, their ages, gender, and how they are doing. It appears that Mass General doctors have a genuine interest in the whole family and not just the patient.

Back to lists. There is a pre-operation list that needs to be given to patients.
1. Slippers - The standard issue of the hospital is a pair of socks with rubber marks on the bottom. These socks are similar to the socks that toddlers wear with rubber on the bottom to keep the from slipping, except the hospital sock are a very dull khaki color. When your walk the corridors or go to the bathroom, it just feels a little better to walk in a nice new pair of slippers than in oversized toddler socks.
2. Bathrobe - Hellooooo, the back of the hospital gowns are open! When you walk the corridors, you don't want to be giving everyone a show at the same time. A nice bathrobe makes you feels a little better dressed when your wear it over the ultra-drab hospital gowns.
3. Nightgown - I brought a button front nightgown, but never changed into it. It seemed that it was much easier for the nurses to empty the drains by unsnapping the hospital gown at the shoulders, so I didn't bother with changing.
4. Remove all jewelry - I showed up for surgery with my wedding ring on my finger because my fingers were more swollen than a kielbasa sausage. The pre-op nurses had to cut my wedding ring off my finger! Yes, I had surgery before the surgery. I asked them to put it in an envelope, and had Chubba place it in his front pocket. He was going to just stuff it in his pocket with his loose change.

Anyway, back to getting a mammogram. The next time you pick up the phone to make an appointment for anything, also make that appointment for a mammogram. Cancer sucks. You don't want to find this out first hand.

Lecture over.

Monday, June 14, 2010

The List...

When you go to summer camp, you are given a list of things to bring to camp. For the first day of school, each student is sent a supplies list. Even Santa has a list. If you have a mastectomy, you are sent home from the hosptial with a handful of prescriptions, that's all.

Why does no one give women undergoing surgery for breast cancer a list of supplies that would be useful when they get home from surgery? This list belongs inside the cancer binder that all surgeons should give to their patients. Following is my supplies list that I would pass on to others. (This list is specifically for someone that had a single mastectomy, lymph nodes removed, and a tram flap reconstruction.) It would be easy to modify it for other types of breast cancer surgery.

1. Pillows - lots of pillows. Because of the stomach surgery, I sleep with two pillows under my knees. I sleep with my head propped up on 2-3 pillows. It is most comfortable for my stomach incision to sleep in a V position. I also sleep with a pillow supporting my left arm because of the lymph nodes being removed. (In the hospital they used pillows in all the same places.) I use a total of six pillows when I sleep.
2. Nightgowns that button up the front and have pockets. Button front is essential because it is difficult after surgery to put anything over your head. I turned the pockets inside out, and put the drains in them from the inside. This is much more comfortable that pinning them to the inside of your pjs. But, do you now how difficult it is to find pjs that button and have pockets? There are a ton of Aunt Bea-type house dresses available, but you must show your AARP card to purchase one. I was very lucky to find a decent nightgown by Ellen Tracy at Nordstrom - the funny thing is that I bought it for the buttons, and later found the pockets, and their usefulness.
3. Washcloths - tons of washcloths. I went through at least 6-10 washcloths a day. I would lay down a clean washcloth by the bathroom sink every time I emptied my drains - twice a day. I used 1-2 clean washcloths when I washed out the measuring cups for the drains. I used 3-4 when showering because you must be very careful when cleaning the incisions. Whenever I did anything related to the surgery, I used a clean washcloth for a sterile surface.
4. Loose sweat pants or shorts with pockets. I found it much more comfortable to place my drains in pockets that to pin them to the inside of my clothes, or pin them to the waistbands.
5. Large button front tops. Buttons are essential because it is difficult to pull anything over your head. The largeness is to hide the drain tubes and drains that might be pinned to your waistband or stuffed inside your pockets.
6. Step stool. Because of the stomach incision, it is a little bit challenging to climb into bed. I use a little step stool to help me get in bed. For people with normal-length legs, they might not need this item.
7. 2-step step stool. I sat on the second step when I was was emptying my drains in the bathroom. I also used it as an extra rack right outside the shower for towels, clothes, etc. When I didn't need it, I could fold it up and set it aside.
8. Clipboard. After surgery it is important to keep track to your medications. I always forget whether or not I took my medicine. I think it is important to keep track of your medications - when and how much - in a log.
9. Square band-aids and neosporin. After the drains are removed, a square band-aid with super strength neosporin was placed over the point of entry. They must be changed every day. I learned Curad and Band-Aid make two different sizes. I prefer the larger Curad brand. The doctor's office had even larger, oval shaped band-aids that worked the best. I took a handful of these larger band-aids before I left the examining room, but when four drain holes to cover, I went through them quickly.
10. Extra pair of glasses in the bathroom. Yep, I'm getting old and need glasses to read little print. Every time I emptied my drains, I needed glasses to read the measuring cups so that I could write it down in my log. It was so much easier to have everything I needed for drains set up in the bathroom. (No, I do not read on the toilet, and do not need glasses in the bathroom for this reason.)
11. Home nurse. If insurance allows it, get a home nurse. (At first I didn't think that I needed or wanted one.) It is comforting to have a medical professional check up on you twice a week. She checked the incisions, the drains sites, and answered any questions. She has direct contact with my surgeon and his assistant. My home nurse has called the doctor's office twice on my behalf.
12. Last and most importantly - help. If you have children, it is great to have extra help. My mom was critical to my recovery. With me in Boston, and the girls needing to get ready and off to school, and Molly needing to be picked up, there is no way Chubba, the girls and I could have made it without my mom's help. She made life much easier to handle for the girls while I was in the hospital, and also after I got home and was all drugged out. She was the stabilizer for our rocky boat.

I am sure that I forgot something essential from my list, and will remember at 3:30 in the morning.

Tonight Molly asked when do I have to go back to stay in the hospital. I told her that I don't have to go back, and that all the surgery is done. She said, "What about the floppy and the not floppy boob? Are you going to make them the same?" I asked her if they look bad when I wear a bra with clothes. She replied, "Well, they do look a little different because one sticks out farther, but it doesn't look that bad." I think she approves... It is hard for me to even entertain the thought of that surgery right now. Dr. Chief is all ready to do the surgery so that I "match," but he has to wait in line behind chemotherapy and radiation.

Whacky thought for the day...
Who needs mirrors when your have daughters?!

Thursday, June 10, 2010

I'm Free, I'm Free...

Yesterday I had the last two remaining drains removed. No more tubes. No more twice-day empty and measure. No more drain log. The only gross thing left for me to do is to change the bandages over the four spots when the drain tubes came out of me. I can wear my own clothes because I no longer need Chubba's oversized shirts to hide the tubes, drain, and lack of bra. I even wore one of my super-soft mastectomy bras today for the first since the surgery, and my right side appreciated the support. I look a little uneven in a t-shirt, but not too bad.

They also took off the large waterproof bandage covering the stitches for the reconstruction. Dr. Chief said that I look good, and he doesn't need to see me for three months. I asked about the stitches that go all the way across my belly and my chest. He said that they will dissolve over time. He said that I have about 5,000 stitches in all. I am sure this is a bit of an exaggeration - at least I hope so.

On this trip to the hospital, I finally remembered to go back to the breast cancer center and give blood for genetic testing. Evidently the sample I gave locally for genetic testing didn't work. The Images Boutique is next door to the breast center. It is a small retail store will all sorts of things for women with breast cancer: wigs, hats, scarves, specialty bras, specialty swimsuits, prosthetics, jewelry and more. I bought four hats in preparation for chemotherapy. I am a lover of hats. In my closet I have four hat boxes stuffed with hats. Most of my hats are too fancy for everyday wear. I have worn hats to weddings, sales meetings, holidays and other events.

I am using my left arm now, but no lifting at all. So long Bob Dole! My cousin warned me of not overdoing it too soon, and I am heeding her warning. (My cousin went through this same garbage last fall.) Getting dressed is a lot easier when you can use both arms. I had to dress differently when I was only right armed. We right-handed people usually put our right arm in first, etc. When you don't use your left arm, you must dress left-handed, left arm first. Here's a challenge, try dressing left handed, and you will see how spastic you feel doing something so simple.

Today, I think Chubba did his first solo "big" grocery shopping since we moved to New England. When he got home, he was excited to inform me that the 24 pack of toilet paper is less expensive than buying two 12 packs of toilet paper. Can't you just see him in the toilet paper aisle, studying the toilet paper, and getting all excited by this discovery? I think he was also a little surprised at the total bill, and was a little bummed when I didn't show the same shock.

This week I have slept more than the three previous weeks combined. I think all the sleepless nights caught up with me. I am finally sleeping through the night. After I get up in the morning to help Molly off to school, I usually go back to sleep until around 1:00 p.m! The days go by quickly when you spend so much of it asleep. I still am dealing with constant pain that sometimes spikes a bit, but nothing too bad. The skin on my stomach feels like it is constantly stretching. It feels a little numb and tingly. The left side of my chest and left underarm just ache all the time. Sneezing and coughing gives me a good jolt.

Whacky thought for the day...
Since two of the women followers - Bridget (not my sister) and Laura (cousin), and I have had breast cancer, the rest of you should be good to go. You can thank us for falling on this sword for you.

A belated Happy Birthday Hannah!!! - June 8th.

Monday, June 7, 2010

Home Alone...

Today I was alone for the first time in three weeks. It was very strange to not have someone around. Am I too old to say that I miss my mom? I am one of those odd birds that doesn't mind being alone. I lived alone in my 20's and loved it. There is something free about being alone; no questions to answer and no behavior to maintain. However, I didn't feel that freedom today. I kind of felt trapped- trapped by the surgery, trapped by the tubes, trapped by cancer. I can't do anything that involves more than ten pounds of lifting, or bending over, or reaching, or twisting. (I can't even lift my 2-ton cats!) Laundy -no. Cleaning-no. Emptying a large vase-no. Getting out the sewing machine to repair a skirt-no. Making Rice Krispie Treats - the world's most perfect food - no. Gardening -no. Drive to the store - no. Crying-yes. I know, I know, you are thinking that "no" to all these chores sounds good - it's kind of like "the grass is always greener on the other side." (Actually, Chubba did a great cleaning yesterday, and Roo did the laundry tonight.)

So, for the last three weeks I have not:
Gone to a grocery store -don't miss it. (Henry's Market w/ my mom doesn't count - it is like a deli on steroids.)
Drop off or pick up Molly from school-miss it.
Wear only my own clothes-miss it.
Eat whatever I want - don't need it.

I had an appointment to get the tubes removed today, but I had to cancel due to they are still draining too much. I rescheduled the appointment for Wednesday. One drain in my tummy will definitely be ready, but not sure about the one left under my arm.

I am starting a healing wall in my bedroom, next to my bed. I am going to put up all the cards and notes I have received. In the middle will be this beautiful poster/card from Molly's Brownie Troop with several 3rd grade handwritten notes - mostly about my pink hair. The Troop also made me several butterflies that will brighten the wall. The reason I can cover a wall is because, believe it or not, for four years I have had bedroom walls that had wallpaper partly removed, and need to be painted. (We have a mega high ceiling in our bedroom.)Where has time gone?! Chubba wanted "us" to finish removing the paper and paint the walls the week before surgery. Yeh, right. Riley's room was much more fun, and way easier.

I am not sure about this reconstruction thing with the mastectomy. I guess it was better to get it all done at once. It just seems to be prolonging the recovery time. By the way, the tummy tuck thing -totally overrated. I just look like I had the 3 day flu, not 200 days of sit-ups. Anyway, I didn't do the tram flap for the flat stomach, I did it because I don't have to worry about rejecting the implant. With the radiation, the implant would have a 50% chance of failing.

Whacky thought for the day...
Can you imagine not going to the grocery store for 3 weeks? Yep, I'm bragging!

Saturday, June 5, 2010

Settle For The Best...

A week or so ago my surgeon, Dr. T. Best, called to check up on me and to tell me that I need to schedule my appointments with the medical oncologist and radiation oncologist. Because I had mentioned to her earlier that I would prefer to have the treatments 10 minutes from my home rather than driving into Boston weekly(chemo) or daily (radiation), she recommended two doctors at Mass General North. Actually, her words were, "I like to work with medical oncologist, Dr.____, and for radiation I want you to see Dr. ____ because he has the best experience with radiating a tram flap. Please make an appointments with these two doctors." One of the doctors is the Director of his specialty, but not sure about the other. I am confident that she will only hook me up with the absolute best in their respective field.

So the appointment phone call chain begins. My first I call Mass General North I had to give a screener person my entire story, Dr. T. Best's name, the two doctors I would like to see, and get my name on a list for the appointment person to call me back. The med. oncologist scheduler called me back right away and set up an appointment with my requested doctor. However, she could not schedule the radiation oncologist, and another person would call me back for that appointment. When the rad. oncologist appointment person called to schedule, she put me with another doctor, not the one requested by Dr. T. Best. Her reason for the switch in doctors was confusing, some reason about being in the clinic, or not in the clinic. I very nicely explained that I wanted to see the recommended doctor and asked what would it take to see this person. I also asked if it would be easier if Dr. T. Best called the recommended doctor, and she emphatically said no, and she would call me right back. Guess what? I got the doctor that was recommended, and more importantly that I wanted to see. I have a feeling the Dr. T. Best can wield a big stick - at least dropping her name got me to where I wanted to go. I know, it is all confusing - thank God I was off the meds or who knows what would have been scheduled!

I learned in this medical business that you must keep gently pushing, be patient, be nice, and eventually you will get what you want.

On June 17 I have an appointment to meet with the medical oncologist and radiation oncologist at Mass General on the North Shore. These two people will decide what kind of chemotherapy I will be taking, and how much radiation I will need. To me, chemotherapy sounds like something only other people, or other families experience. It is strange that I will actually be having chemotherapy. I am a little scared - not about the hair loss, but about the nausea and throwing up stuff. As I mentioned before, I was nauseous the entire time in the hospital just from pain medication. I must completely recover from the operation before the chemotherapy begins. (Chemotherapy is first, radiation second.) The way I feel right now, I would welcome chemotherapy because it would mean that I am over this feeling crappy from the operation. I'm hoping it will begins around the second week of July.
Yep, I still feel yucky from the operation. I still have two drains, with the hopes of having them removed on Monday. The output must diminish to a certain level before they can come out. One is ready, but unfortunately the other one is still producing almost twice the amount required for removal. I have a constant, manageable pain level of about 2/3. I tire unbelievably quick. Other than that, all is good.
Oh yeh, I've become nocturnal again. I told my neighbors that I am officially the neighborhood watch captain! The last few nights I have watched a lot of thunder and lightening. It was so fun- we never got weather like this in California.
Whacky thought for the day...
I have the coolest 80-something Godmother. She sent me the funniest card:
Outside reads: "When life hands you lemons, make lemonade."
Inside reads: "But when life hands you a load of crap, don't make anything."
Happy Birthday Courtany! Yikes-21!
Congratulations CSUS Graduate Brittany!

Thursday, June 3, 2010

What A Pain...

I am afraid of pain. The worst pain I ever experienced was when I was 17 years old and burnt my finger while making the popcorn balls that I was sending to my brother at tennis camp. Burns are the worst. So, I think I can say I have never been in excruciating pain. Even my #9 pain in the hospital, on a scale of 1 to 10, was not earth shattering. I must have inherited some, maybe even a tiny bit, of my dad's unbelievably high tolerance for pain. So, why am I so afraid of pain?

The worst part of this whole cancer inconvenience has been the lack of education regarding pain management. No one at the hospital explains the pain meds, how quickly they work, at what level of pain do you need to take them, and at what level should you stop taking the meds. (Pain is measured on a scale of 1-10. Level 5 seems to be considered the threshold where you say ouch. The pediatrician has the same scale but with a smiley face at one end, and face with big tears at #10.)

I mentioned before that I never felt any pain in the hospital, other than the one night. I just kept pushing that morphine button because I was afraid of pain, even though I was not in pain. If someone would have explained how fast the morphine will cut pain once it starts to increase, I might have not been watching the clock for every ten minute mark where I could push the magic button. I still do not know how fast morphine works, only that it works very well! Did I push the button more than needed? I don't know. Does it really matter? I don't know. What I do know it that I took too much pain medicine, when I got home.

I was sent home with seven prescriptions. I had so many meds that I kept a clipboard by my bed where I wrote down, on a daily basis, and as I took the meds, the time I took every pill, the type, my pain level, and sometimes my temperature. On a separate sheet I wrote down every medication with a description of how many, how often, and what for. I wrote the name of the med with a big black sharpie on each bottle cap and side of the bottle. (The eyes are going, and I didn't want to make a mistake.) Poor Chubba, the lights were on and off all night as I was logging my drugs.

Dilaudid, a narcotic, was my pain medicine. The bottle reads 1-2 tablets by mouth every four hours. One of the nurses told me that I could take one every hour. Another nurse told me to take 1-2 tablets every two hours. I was confused, and so afraid of pain, that I took two Dilaudid every two hours - double the dose on the bottle. One morning I woke up and noticed that I went 5 hours without a pain pill, so I took three pills; pain level was a 5/6. I got so wrapped up in not missing the two hour slot for taking medicine, that I got a timer to wake me every two hours to take this darn Dilaudid. As I'm reading over my drug log right this moment, I noticed my pain was rarely above level 2/3 - no wonder. I told my home nurse after a couple of visits that I thought I was taking too much pain medicine. (My insurance pays for a nurse to visit me 3 times a week to check drains, vitals, etc.) When she read my log, she said that I took enough Dilaudid to sedate a horse! By this time I already began weaning myself off of Dilaudid and onto Extra Strength Tylenol.

So, I went through detox, my own little mini rehab. I had to get the morphine and Dilaudid out of my system. One side affect of detox was that I had incredible restless leg syndrome at night. I didn't sleep more than one hour, three nights in a row. I had conversations on the phone that I don't remember. I was hot. I was cold. I was hot and cold at the same time. I had the most bizarre dreams, but none that I can remember. Fortunately, this detox wasn't that bad, I just felt strange and uncomfortable. The girls never even knew that I was having issues - just same ol' whacky mom.

The most frustrating part about this pain management/detox experience is that it was completely avoidable if someone at the hospital had explained to Justin, my mom, or me how the pain meds work. I understand that everyone has a different toleration level, but there must be some standards regarding how quickly they work, and when you can back off or ramp up. The lack of education explains why so many people have problems with pain medication. I don't think there is a medical specialty for pain management other than anesthesiology. Not enough attention is paid to pain management by hospitals, and I think this needs to change!

I only take Extra Strength Tylenol a couple of times a day now. I have a constant level of pain around 2 or 3. It's minor and livable.

Today I went on a little outing to a nursery and Henry's Market with my mom. (I am going to miss her so much when she is gone.) About a hour after we got home, I hit the wall and was wiped out. My energy level has a ways to go.

Whacky thought for the day...
Toes are so handy and underutilized. Toes can pick up a pencil. You can pick up clothes off the floor with your toes. A dropped washcloth in the shower can be retrieved with your toes. But, a bar of soap is impossible.

Yesterday, June 2nd
Happy Birthday Bridget!
Happy Birthday Vincent!

Isn't it strange that I have a sister and Chubba has a brother with the same birthday? Bridget would be quick to point out that she is 5 years younger than Vincent!

Tuesday, June 1, 2010

Two Down, Two To Go...

Today I had a follow-up appointment with Dr. Chief. While waiting for my name to be called I realized that The Plastic and Reconstructive Surgery office at Mass General must be one of the nicest waiting areas. Just after we arrived, three beautiful flower arrangements were delivered for the waiting area; a large one for the reception desk, and two small one to sit by the magazines in two different areas.Unfortunately I could not fit one of the small arrangements of pink gerbera daisies, snapdraggons, small pink roses and lemon leaves into my purse. The decor and lighting in this area is very comforting. I think the soft lighting is to hide the reason we are at the plastic surgeons in the first place. I was amused by the pamphlets on the table sitting next to the TIME magazines. For example, there are two different pamphlets on male breast reductions - didn't Seinfeld do an episode on this subject with the mansiere? Anyway....When I got into the office, they removed two drains, and left two in. I could possibly get them removed by Friday, but if not Friday, probably Monday. This is the first time that Chubba met Dr. Chief. He was too thrilled with him because Dr. Chief doesn't seem too serious/attentive, he talks fast and then moves on. I, on the other hand, really like his funny, sarcastic and flippant demeanor. When he asked how I felt, I told him that I felt like crap. (I had an episode with a barf bag on our drive into the hospital. So much for the time I spent on my make-up.) His response to me was, "It doesn't really matter how your feel, but how you look. And you look really good." I think this is a mantra that they teach all young inspiring plastic surgeons in medical school.

So the roommates...Ugh.
My hospital room was on the burn and plastic surgery floor. In my double room, I got the outside bed, by the door.. My side was quite small, with only a curtain as privacy that I had to keep asking to be closed. The other bed had a view of the Charles River! Maybe if my surgery didn't take the extra 2 1/2 hours, I might have snagged the bed with a view, and more importantly, closer to the bathroom. If you have ever had abdominal surgery, this being my third, then your know that those first trips to the bathroom are like walking miles through the desert with a 500 pound pack on your back, all the while someone is constantly poking you in the gut with a sharp stick. Nice imagery?

My first roommate was of Chinese descent. She and her husband talked (in Chinese) NON-STOP! Justin asked the nurse for ear plugs, and they sent them up from MRI. The nurses kicked her husband out at midnight, but it took many efforts to get him to leave. I think the woman had a lumpectomy. The next day her two middle/high school aged kids and several others came to visit. (One wore an Andover High lacrosse sweatshirt.) They all chatted loudly NON-STOP all day! Not even the morphine could help this pain. However, I thought it was sweet when her son - about 8th grade - took his mom by the arm to help her go for a walk in the corridor.

Roommate number two was a total pain in the ass. She was a 25 years old WASP who was having some difficulties with her implants. Her implants were not due to cancer, but from wanting something bigger than her God given size. Here parents were really this issue, not so much the girl. They showed up with two big bags of food from Whole Foods and set up a buffet in her section of our room, describing everything they are eating. All during this, I am completely nauseous, trying my third medicine to quell the nausea. I kept thinking I would pay anything right now for some Bose noise reduction headphones. The father was full of bravado, and felt it necessary to step outside the room to talk loudly on his cell phone about self-important matters. Stepping outside the door meant his was closer to me and now I got the privilege of listening even more clearly to his conversation. I don't know why this family didn't walk down to the lounge area to have their mid-day feast because the girl was perfectly capable of walking around. Yes, the next morning before she left, they brought in another bag from Whole Foods with assorted breaskfast-type items. If they keep feeding like this, she might be back for liposuction.

Number three was a very sad situation. I actually prayed for her a couple of times. She was in her twenties and had some terrible infection in one finger that I heard her say she got from a nail salon in Lynn. Ick. They made her soak it a couple of times, and she was in excruciating pain. She would hop around when she had her 20 minute soak and whine out some words in Spanish. They hospital wanted her to go home the same day as me, but she said that she had no one to pick her up. I heard her speak to her mom and dad, and later someone else. She told the nurses that no one would have a car until the next day. One nurse even snappishly suggested she take the bus. They hospital ended up driving her home in a wheelchair van. Poor gal.

I'm feeling so, so. I am trying to not do too much and stay rested. I still fight the nausea thing all the time. My left underarm, left chest, and stomach are in constant ouch, not necessarily pain. My appetite is just beginning to come back - stay away! stay away appetite!

Whacky thought for the day...
Keval's philosophy on cell phones: There are only two people that need cell phones 24/7: someone waiting for an organ donor, and the surgeon performing the transplant.