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

Friday, July 30, 2010

I'm Molting, I'm Molting...

Wow, is my hair falling out fast! When I took a shower this morning, I made all kinds of noises as clumps of hair kept coming out in my hands. Molly checked in on me to make sure I was alright. It is definitely a strange sensation because you don't even feel the hair as it leaves your scalp. Hair is everywhere...all over the bathroom, my bed, the keyboard. I need to wear a hairnet in the kitchen. It's disgusting. I'm a witch with no hair, "I'm molting, I'm molting!" (Well, Salem, MA is only a few miles away from Manchester.)

I now need to wear a hat or head scarf all the time when I go out. It is embarrassing to have the fur flying as I walk down the street.

The head shaving party is mainly a celebration of thanks for all the wonderful support I have received during the past several months. Generous hearts have presented themselves in many forms. Yesterday I spoke with a Santa Clara University, Class of 1983, old friend, Jimmy Neutron. He lives with this family in the Seattle area. He said that he feels like he talks with me every day because he reads this jibber jabber. He even wears a pink wristband in honor of me - it takes a real man to wear a pink band! Knowing that he and his wife read this, makes me feel like I am talking to him, and all of you every day.

I don't say THANK YOU enough to all of you for your support, prayers, wishes and good thoughts! (Am I getting too mushy?)

Whacky thought for the day...
Duct tape is so versatile!
This priceless example is complements of my llama raising, New Mexico living, generously supportive, cousin Laura...
A year ago she performed her own version of the breast cancer dance. She buzzed her head because she didn't enjoy the flying fur either. However, the little stubbles that remained kept falling out and she felt as if she was shedding like a cat. SO, she got out the old duct tape and "defuzzed" her head! Yes, duct tape! She wrote that it didn't hurt. He husband and her sister caught her in the act, and after they got over the shock, they rolled around the floor in hysterics. I think this should go in the 3M Duct Tape hall of fame annals!

Thursday, July 29, 2010

Head Shaving Party!!!

Well...Dr. Banana Split was off by one day. Today my first chunk of hair came out while I was washing my hair. It was a small chunk of about 10 strands of hair. Several single strands subsequently came out. Throughout the day I shed single strands of hair. When Riley woke this morning, I told about my hair coming out, she said that she didn't want to hear it. When way off Broadway star, Molly, woke up from a long sleep and I told her about my hair falling out, she gave me a big thumbs up. Later Molly said that I am molting!

It felt a little freaky and shocking to be holding a chunk of my hair. I had surgery with a long recovery, I have scars all over my body, I had two chemotherapy cycles, but having my hair fall out makes it seem all the more real. Gulp! My head constantly tingles as strands of hair are trying to escape my head. I took a 4 hour nap today because the two previous nights totalled 8 hours. After I woke up, I checked for hair on the pillow, but didn't find any. I gave my hair a good brushing, and filled up the brush. Now I know how the cats feel when the girls brush them. I wore a scarf on my head for the first time tonight because I didn't want my hair flying all over the people seated next to me at "The Music Man." It took three female neighbors to help me get the scarf placed correctly on my head so that I didn't look like a pirate. I was going to wear hoop earrings, but Riley and I agreed that I looked like a gypsy. I settled on the pink pearls that Chubba and the girls gave me when I got home from the hospital, post surgery. (Another local business shout out: N. Larson jewelry is a wonderful jewelry store in Manchester! Nancy is so warm and nice, and not pushy or intimidating like many jewelry designers and retailers. She makes most all her jewelry using colorful and clear crystals, unique stones, and traditional valuable gems. The prices range from very reasonable to investment-priced black diamonds for that special occasion- like a 50th birthday. Hmmm, anyone turning 50 next year?)


5:00 - ?
8 Burnham Lane

BBQ (east coast translation = "cookout") Hamburgers, Hot Dogs, Potato Salad, etc
Libations - soda & beer

ALL ARE WELCOME - IF YOU ARE READING THIS, YOUR ARE INVITED! ADULTS AND KIDS (if it's hot, have kids (or you) wear swimsuits for a first class water gun fight.)

RSVP would be nice, but not necessary (don't want to run out of food or beer)

Whacky thought for the day...
Bald is bold and beautiful! (I hope. Yikes!)

Tuesday, July 27, 2010

Hair Watch, 48 Hours and Counting...

48 hours ago, oncologist, Dr. Banana Split said that I would be losing my hair in 48 hours. Not even a single strand has fallen out. However, my head is feeling a little more sore - like tight pony tail sore. Riley keeps grabbing my hair to see if she can pull out any hair, but no go. She is actually a little worried about how I am going to look without hair. I told her that I will look shorter. My thoughtful, Dr. Seuss pajama wearing, giggly, classmate of Molly, 9 year old neighbor boy shaved his head last week in honor of me. He looks very cute! His big blue eyes look twice the size! I told Riley that I will look just like Spencer. She didn't buy it.

I did the goofiest thing yesterday during my chemotherapy. I had to go to the bathroom, and when I got out of the infusion chair and grabbed my IV pole, I could get the pole to only roll a short distance. It felt like the wheels were locked. I was next to the nurses station, so I asked over, "Do I need to be smarter than the pole because it feels like the wheels are locked?" They looked over and saw that I forgot to unplug it from the wall! So I acknowledged that indeed it is important to be smarter than the pole! We all had a good laugh. (I don't know why I forgot to unplug the pole because I did it twice last time I was there. It was probably the forgetfulness thing...)

Molly gave me my bone marrow producing shot tonight. She cleaned the shot area with the alcohol swab, and pushed the plunger after I injected the needle into my thigh. She was pushing a little hard, so the needle went in a little deeper, but it didn't hurt. However, a bit of blood come out upon removing the needle. Dr. Molly opened a sterile gauze pad and cleaned up the blood and put a Barbie band-aid over the site. She was quite pleased with herself. The girls are going to the next chemo appointment because I want them to see what it is all about. I don't think they will stay the entire time. I am hoping that Molly can practice injecting the shot with the shot practicing toys. Riley will probably leave the room the minute she sees a needle. When I took the shot out of the refrigerator tonight, the paperwork was still in the zip-lock bag. I discovered that each shot cost $3300. The total bill was $6600! I paid $30 total; $15 each for the shots. Thank goodness for insurance!

Chubba's mom is visiting. She has been very helpful with the girls while Chubba and I attend doctor's appointments. The girls are schooling her in the card game, Crazy 8s. Molly can't seem to lose!

Last night I went to sleep at 4:00 a.m. I guess technically I went to sleep today. I woke up at 7:30. I think I remember having difficulties sleeping right after my last chemo date. I look like I got 3 1/2 hours sleep too...not pretty. Strangely, I did not feel too wiped out today. I sense a crash in the future.

Whacky thought for the day...
Would you believe that I was a math major in college because I was a terrible writer and didn't like writing papers? Not that I'm any Jane Austen now, but I enjoy writing this jibber jabber.

My Teeth Are Floating...

Yesterday I had my pre-chemotherapy appointment. At this appointment, I meet with my oncologist and nurse practitioner on alternating appointments, and I have blood drawn for testing. The first words from Dr. Banana Split, my oncologist, with a tone of excitement, was,"You still have your hair!" (This reminded me of the times my gynecologists exclaimed "It's a girl!" -We never peaked.) Chubba asked her is this meant I wasn't going to lose my hair. She responded, "Oh yes! She will definitely lose her hair, and possibly within 48 hours." Well, it has been over 24, and I'm holding strong. Maybe my hair hasn't fallen out because it's so thick or because it's pink. My scalp is beginning to ache a little bit, as if I had a tight pony tail in my hair for a long time and I just let it down. Dr. Banana Split said this is a sign that it's coming out soon.

The girls asked me if my hair was going to grow back gray! When Chubba told Dr. Banana Split about the girls' inquiry, she told us that many women are shocked when their hair comes back gray. When Dr. Banana Split asks these women what color their hair was before it fell out, they usually reply, "I've been coloring my hair for 15 years." With this thought in mind, my hair will probably grow back salt and red pepper. My gray had just beginning to show around the front with only a few up top. (Hey Clean Machine, my friend and hairdresser - don't go telling my secrets in the comments section!) Getting less young is the pits.

Dr. Banana Split was pleased with my mild or lack of side effects. However, the last four days I have had annoying and sometimes terrible pain in my ankles and feet. Sporadically I get a pain shooting up my left leg, starting at the ankle and stopping in the back and middle of my left thigh. This pain made falling asleep difficult two consecutive nights, explaining my 3:00a.m. shut eye. Dr. Banana Split said that this is the first she heard about foot pain during chemotherapy. She believes that the pain is due to menopause. What?! If your are even on the fringe of menopause, chemotherapy throws your body into full-on menopause. During menopause, joint ache is common. Yep, chemotherapy is making me less young. By the way, I was assigned a new nurse practitioner. No more physical torture.

I forgot to tell Dr. Banana Split and the Clinical Trial Nurse, Laverne, about one symptom - forgetfulness. Sometimes I think I'm losing my mind because I forget things, or I repeat myself. It is so frustrating. I feel like the biggest space cadet! "Earth to Keval, Earth to Keval, are you with us?"

I was a little unsure how the chemotherapy doses and potency works? Do they get stronger each time. Does one dose (cycle) build on top of another dose, building it up in the system? Dr. Banana Split explained that yesterday, I probably didn't have any chemotherapy left in my system. The poison lasts just about two weeks in my system. Each dose (cycle) will be exactly the same, so my side effects for today's cycle should be consistent with the previous cycle. YES! Yahoo! (I hope I'm not counting my chickens before they hatch.) She also explained that during the 5-7 days after the cycle, the chemotherapy is mainly attacking any bad cells. The remaining days the poision attacks the healthy cells. This explains why the body crashes anywhere from day 5-7. I crashed on day 6, not being able to get off the couch all day.

Today was chemo day. Two down and two to go!

I was told that my lab work came back looking good. My white blood count, platelet count and iron all looked good. I take iron pills on top of the long list of other medications. I must write all my meds in my calendar/daytimer, or I lose track of what pills to take ,what time of day to take them, and with or without food. Tomorrow I give myself another shot to help produce more bone marrow; Molly can't wait.

Today I got a foot massage with acupressure during chemotherapy. It was heaven! The therapist, Magic Hands, uses the foot as a map of the body. She presses or manipulates the area relating to your needs: nausea, bowel issues, headaches, hiccups, upper GI burning, etc. Magic Hands worked on my foot/ankle pain and the pain shooting up my leg. So far, no pain today, and I even wore my high, sassy shoes to opening night of "The Music Man!" ( Molly is in her first off,off, way off, Broadway production.) This therapist made a believer out of me on the effectiveness of foot acupressure. I already have a time for the next cycle.

The chemotherapy seemed to go by quickly today. I still had the very toxic red medicine that cannot be given via a drip, it must be injected by the nurse. The nurse told me that I am fortunate to have a port-a-cath because the "red devil," Adriamycin, is very dangerous if it leaks into your skin. It binds with the DNA in the skin, instantly killing the skin cells. As I mentioned before, a plastic surgeon is scheduled soon after this happens. "Lucky" comes in all forms.

I was also visited today by a social worker. We talked about how things are going - great. She gave me a flyer titled, "Feel Better, Look Good." Next Monday, Mass General Hospital in Danvers is having free seminar/clinic on how to wear scarves in various ways, how to apply make up- eyebrows, eyelashes, etc, and other tips with wigs or hats. They give each woman a free supply of make-up to keep, and scarves will be available for demonstration. I signed Riley, Molly and I up to go. I will bring my own scarves. My neighbor, Mary, is going to lend me some of her Hermes scarves. I will look so designer! I think the girls will have fun helping me with the scarves and make-up. There will be a few laughs and giggles. The timing will be perfect because I am tentatively scheduling my hair shaving party for Sunday - but, only if my hair begins to fall out between now and Sunday. Stay tuned for confirmation of date and time. All are welcome - kids, grown-ups, anyone that wants some good laughs, some food, libation, etc. If you are reading this, you are definitely invited!

When I got home, and went to the bathroom, my pee was orange again. I called Riley and Molly in to look at it. I know, grossly strange. Riley said, "This is so gross, do I have to?" She looked and walked out mumbling "disgusting." Molly came bouncing it because she was eager to see this strange sight. Upon viewing the orange pee, she said, "Cool! We could dye eggs in that!" Where does she get her weird, sarcastic sense of humor? (She's only 9 1/2 years old!)

Today, and for the following several days, I am suppose to drink about a gallon of water each day. I have so much water in me, my teeth are floating! Needless to say, I am constantly trekking to the bathroom. I am pleased to report that my pee is now normal color - just in case you wanted to know.

Whacky thought for the day...
Three different people in Manchester have offered me pot (marijuana) for nausea. I will not reveal my sources (suppliers.) When I told one supplier that I have terrible asthma, and don't think I could last one inhale (Sorry Pres. Clinton-I think inhaling is necessary,) this supplier smartly suggested making brownies. I very nicely declined because so far, I surprisingly and happily have this nausea thing under control

Belated Birthday Wishes :
(Would you believe that all my birthday wishes have been just for my large immediate family?)
Happy Birthday Daniel! - July 25
Happy Birthday Brenna! -July 23

Wednesday, July 21, 2010

Hair Today, Gone Tomorrow...

I have not lost any hair, yet. Today I realized that I haven't shaved my legs in a long time. In the shower this morning, I shaved a small nubble off my legs, and they are smoother than a newborn baby's behind. I don't think they have ever been this smooth. I am guessing that my hair has stopped growing, and that the next phase will be it falling out.

How many times have I mentioned that I am not wearing a wig? I just couldn't imagine putting that on my head in this heat and humidity. I tell everyone that it would be like wearing a fur hat in the summer. I probably am repeating myself because although I have not lost any hair, I feel like I am losing my mind. I forget stuff like orthodontist appointments that are written in bold Sharpee on the refrigerator calendar, even with a phone call the day before. I repeat myself unknowingly, telling the same stories or asking the same questions repeatedly to the same people. (My poor neighbors and family have several months ahead of the same things being repeated over and over by me.)

Stay tuned for the head shaving party...

Whacky thought for the day...
I don't understand the saying, "...slept like a baby." It usually means that someone had a great night of sleep. Babies don't sleep through the night! They barely sleep 3 hours at a time. After a restless night of sleep, then I say that I "slept like a baby."

"Slept like a teenager" is a much better phrase to define a good night of sleep.

Monday, July 19, 2010

Strange Side Effects...

I have read several lists of side effects from chemotherapy and medications. All the side effects are scary and have a negative impact on one's life. However, I am experiencing some positive side effects of chemo and its corresponding meds.

My fingernails are growing like crazy! In the past week, my fingernails must have grown half an inch. This could be a side effect of the chemo or the Neulasta, the bone marrow generating shot. I didn't read anything about crazy nails in all the literature given to me by Laverne and Shirley, the clinical trial nurses. My pedicure, an uncommon treat, looks tired after just two weeks because my toenails are growing so fast. If messing up a pedicure is one of the worst things that happens in these two weeks between treatments, then I am a very lucky person.

The second strange side effect is the increase in my niceness. Yep, niceness. Some rare people are just genuinely nice, and as most of you know, I don't fall into that category. (That's okay if you agree with me. We all know I'm right on this one...I have texture!) But, since chemotherapy, I feel like Polyanna, happy and nice. What??? I know...this is very bizarre. My mom and my sister have noticed, and so has Chubba and the girls. Maybe the chemo killed some of my "bitchy" cells that sometimes mask the "nice" cells in my body. Whatever the cause, my family likes it, and so do I.

Exhaustion is the only "normal" side effect that I am beginning to feel. Today I hit the corner. (Hitting the corner is similar to hitting the wall, except that you have two walls for support, preventing a very hard crash.) Today at around 3pm, I had to take a nap right away. It was a funny feeling, similar to having to go to the bathroom right away, except I had to sleep immediately. I passed out for almost two hours. I think that I actually fell asleep before my head hit the pillow. When I awoke, I felt great. All so strange...

I can't believe that my body is still recovering from the surgery. I can feel the nerve endings, muscles and other internal stuff beginning to work or reattach inside my stomach. The tightness and stretching are a bit uncomfortable, especially when I need to bend over to pick up something. The reconstructive left breast is still healing too. So far, I can say that the surgery, or surgeries -depending if you count a mastectomy by one surgeon and a tram flap reconstruction by another surgeon as multiple surgeries, have been much tougher to deal with than chemotherapy. Let's hope it stays that way.

Whacky thought for the day...
Why does your sweat have a different odor after surgery? Anesthesia? It returns to normal after about a month. Gross.

Friday, July 16, 2010

Chemo Clarification...

I have been asked a couple of times if chemotherapy is radioactive. It is not radioactive, it is a combination of some medications/poisons meant to kill any cancer cells and unfortunately healthy cells. I had two radioactive scans. It was clearly evident when you are in an area with radioactive materials. The triangular "Warning: Radioactive Materials" signs are posted everywhere. Some of the techs wear special protective aprons. The materials are delivered in special lead boxes, or in the case of my PetScan, the injection was pulled out of a deep smoking box - it kind of reminded me of cryogenics.

The nurse delivering the chemotherapy medications wears a special "chemotherapy proof" protective over-garment that kind of looks like a hospital gown, but made from different material. I think, but am not sure, that she wore clear protective eyewear and, of course, heavy gloves. The delivery nurse, not to be confused with those delivering babies, works with my infusion nurse, and the two nurses together double check for accuracy. They both sign the chart listing the meds before they ever leave her hands. They also ask me my date of birth to make sure that I am actually Keval McNamara, born on 3-25-61. I would be surprised is they had a patient named Keval McNamara born on another date. I appreciate the attention to detail.

I now know why all the doctors during this 5+months of cancer dance said that I was so young. Other than the 24-year old guy across from me, most all the other patients looked to be in their 70's-80's. There were a few young whippersnappers in their 60's.

I'm still feeling okay, and I am still walking around barefoot. I thought that since I have wood floors, I can stomp on them a few times during the day, and it would be like "knocking on wood" throughout the day.

Whacky thought for the day...
I was messing around in my garden early this evening, and a mosquito landed on me. I was wondering if it bit me, would it instantly die from the chemotherapy inside of me? Actually, the mosquitoes have been staying away from me and attacking everyone else. Maybe the chemotherapy provides me with constant bug repellent.

Thursday, July 15, 2010

Going Barefoot...

So far, so good with this chemotherapy stuff. However, I am kind of waiting for the other shoe to drop, so I am just going barefoot. If I do wear shoes, I'm going to lace them up tight!

Today is the third day with chemo drugs inside of me, and I've only experienced a little queasiness now and then. I get a little tired, but not any worse than on any other hot, humid day. I even had the energy today to go shopping for boy clothes with Molly & Roo because Molly volunteered to play a boy in "The Music Man." (Summerstage is always short on boys.) I survived Target, Marshalls, Payless Shoes, and Old Navy, but I do admit I was a little nervous about the shoe dropping thing. I kept myself hydrated and kept an eye out for the closest bathroom at all times.

Hair is still intact, and pink. Too bad I can't say the same about our 2-ton cats - not the pink, but the shedding. After Molly finishes "The Music Man" she is going pink too. We would have gone for the pink streaks now, but we didn't think that pink hair would work too well for a boy in the musical. I don't believe that there were too many cross dressers during that era.

Last night I had to give myself a shot for the first time. It was a medication to make more bone marrow, and therefore platelets. Chemotherapy drugs tends to kills the good cells along with the cancer cells that might be hiding. The side affect is aching bones, like the flue, but I took a couple of Tylenol after the shot, and avoided the body aches. My surgeon-to-be, Molly, assisted with the injection. Of course, Riley, who panics whenever she hears the word "shot," had to leave the room. I have seen Melinda, my brother's wife, give herself thousands of shots, so I knew not to cry. ("Follower" Melinda is a diabetic, not a druggie!) I practiced with the nurse at the hospital while I was getting poisoned. She gave me a little round disc with a raised bump than felt like skin, and I practiced injecting a needle into it. Chubba got to try too. I did it incorrectly the first time because I put my finger on the plunger as I was injecting it. The correct technique is to hold the syringe like a dart, and then once it penetrates the skin, push the plunger down. The dart techniques prevents you from pushing the plunger too soon, which is exactly what I did on my first try. I also learned that the rubbing alcohol used to clean the site needs to be dry, otherwise the shot will sting. Molly would have loved playing with these toys.
When I was getting the chemotherapy, I noticed a woman going around and massaging people's legs and feet. The young, good looking guy across from me was having terrible hiccups, a side affect of some drugs. The massage therapist did some acupressure on his feet, and magically his hiccups and heartburn disappeared. This is a free service provided by Mass General for chemotherapy patients. I made an appointment for my next infusion, and told her that my problem will probably be nausea.

Local Business Shout Out...Justin's sister, "Follower" Meg, sent me the most stunning phalaenopsis orchid flower arrangement from a new local florist right here in Manchester. It is so beautiful that it almost made me cry. Having several phalaenopsis plants, I know that these two hair-matching pink orchid plants could possibly last all the way to Christmas. No kidding.
Now, I am not providing this information as a way of hinting, or asking for flowers. If anyone sends me flowers from this new florist as a result of this posting, I will be extremely embarrassed. This is strictly promoting a local business. My family has been in retail in California since 1923. My brother, Daniel, is the third generation to run the family business. I believe is shopping local, especially when quality and customer service is evident!
Here's the info:
The Singing Flower, owner Meggin Hunt

My stomach and reconstruction is still a little sore, but last night I was able to sleep on my side for the first time since May 18th. It's the little things...

Whacky thoughts for the day...

"Think Pink"

"Pink, Pink, Cancer Stinks!"

Photos compliments of Riley McCarthy; taken the morning before my first chemotherapy treatment.

Tuesday, July 13, 2010

What An Experience...

Today was chemotherapy cycle number one of four. I am 25% completed.

Last night I surprisingly slept hard from 2:00a.m. to 7:45 a.m - a great night sleep for me. It must have been all the toilet cleaning that helped me sleep so well. I went to my chemotherapy appointment this morning with my chest puffed out (lopsided as it may be), pink-haired head held high, full war paint (aka make-up which I rarely wear beyond mascara and maybe blush during the pasty faced winters in New England,) and my eyelashes a blazin'. For some strange reason, my nerves were nonexistent.

When I checked in, I had to sign the "blue sheet." I figured out the "pink sheet" is just for appointments, and the "blue sheet" is for chemotherapy. I was lead by a tech through "the door" that leads to the infusion area. I sat in an alcove with three other people. The blueish-greenish vinyl chair reclines like an electronic lazy-boy, and it has a foot rest that pops out from underneath in case you don't choose to recline. The nurse saw my feet dangling because the don't reach the floor - they never have in any chair except when I go to Molly's school conference - so the nurse pulled out the foot stand. Would you believe that my feet barely reached the foot stand? Because of the mess up with my insurance company not understanding one of my prescriptions that must be taken 1 hour before the infusion, the hospital pharmacy provided me with the pill. I sat for about a hour after I took the Emend and 4 other pre-chemotherapy pills. The main pill is Emend, an anti-nausea pill. Last night my mom told me that I have a stomach made of glass, so we both agreed that I wouldn't let any chemo start until this anti-nausea pill was ingested. Remember, your best advocate is you, unless your mom is along for the ride. As I tell my girls, "Don't mess with your mama."

I have two medications for chemotherapy, Cyclophosphamide (Cytoxan-C) and Doxorubicin (Adriamycn - A), often referred as CA.

The IV needle hook up to the port-a-cath was much easier that pricking a vein. All I felt was a little needle pinch. This was all done under a very sterile setting. The nurse used the gloves packaged in a sterile packet, the same type used for surgery. After a little wash with saline, she began the first drug, Adriamycn. The Adriamycn is a pretty, deep beet red color, making red pee a side affect. The medicine came in two long, fat syringes, about he circumference of a toilet paper roll cardboard center. It was about 6-8 inches long. The "A" is a vincular-type medicine, which means it can really mess up your veins. A nurse must sit down and very slowly inject the Adriamycn into the tubes connected to the port or vein. The nurse, Chemo Queen- because she fabulous - told us a story about going to a seminar on vincular medicines, and saw with shock the horrible damage a vincular medicine can cause to veins, and explained that 100% of the time plastic surgery is required because the damage is so severe. (She equated it to going to driving school and having to look at pictures of terrible car crashes.) Since my medicine goes through a port and not directly into a vein, I should be clear of this issue. However, she was watching the port very carefully as she was injecting the "Red Devil," a nickname for Adriamycn. I drank a lot of water since I sat down in the chair. Five minutes after she was done with this first drug, I unplugged my drip machine and dragged my IV pole to the bathroom. Would you believe that my pee was already orange?! red+yellow=orange. When I went again just before we left the hospital, it was orange again, but a little less intense. I was surprised by how quickly this stuff moves through your system and into your bladder.

The second drug, Cytoxan, was only about an hour drip. It is the boring drug, no color, no colorful body fluids, just plain ol' poison. I never felt any of the medication going into my body. In the past, I've had IV's with medicine injected to them that burned, but felt nothing today. Half way through the Cytoxan drip, a volunteer brought me lunch. I split it with Chubba - it consisted of a yummy chicken with fresh tomato and crunchy lettuce wrap, pretzels, two passable chocolate chip cookie, and a variety of drinks. (I stuck with water, Chubba had gingerale - just in case you wanted to know.) The infusion area also has an area with snacks and drinks for the chemo clients.

Chubba and I, well mainly Chubba, had an interesting conversation with Laverne and Shirley, the two nurses directing the study for which I volunteered. (Laverne and Shirley are not their real names - just in case you have not figured out that I don't use any medical personnel's real name.) Chubba asked them is they ever prescribe marijuana for nausea. They said that in the past, they often prescribe Marinol, and pill form of marijuana, but they don't prescribe it much anymore. When he asked why, they really didn't have an answer other than they felt current medications must be more effective controling nausea. Shirley told us a story of one elderly patient who came in for a cycle (treatments are called cycles) and confessed to her that she smoke a little marijuana for nausea. When Shirley asked how did it work, the patient replied "Great!"

So far, KNOCK ON WOOD, my sides affects today have been minimal. My sinus tingled like it does after I take my migraines pills. (Yep, I get them too.) My hand tingled for a little bit. I had a few hot flashes. I got a slightest bit nausea around 8:00p.m., so I took a Compazine anti-nausea pill. I had a fabulous dinner at 8:45, but ate a very small portion. I am trying to eat 5 small meals a day. I must drink three liters of water today, so needless to say, I have peed at least 15 times, but no more orange. I am supposed to drink 3 liters of water every day for a month. We will need to stock up on toilet paper! A few months ago I was worried about running out of vodka, now I'm worried about running out of toilet paper. My worries have definitely gone downhill.

The hardest part about chemotherapy today was seeing a 24 year old young man getting three bags for his infusion. I think he had at least a 3-hour infusion. I don't know what type of cancer he has. He was there with his mom, and his grandfather came to visit. He was very good looking - the young man not the grandpa. If Riley was there, she would not have been able to keep her eyes off of him. So I guess you can say , my treatment chair did have a pretty good view after all!

Whacky Thought For The Day...
Sunflowers are peculiar flowers. Their heads follow the sun; they face one direction in the morning, and by the time the sun goes down, the heads have rotated up to 180 degrees.
Background Info:
Spring/Summer/Early Fall 2007 & 2008 I was part of a gardening staff for a large estate in Manchester. The gardens were designed in the early 1900's by Olmsted Jr. (Olmsted Sr. designed Central Park in NYC.) I worked with 3 other women in the perennial gardens and the vegetable garden. Westward Hoe, fellow staff gardener, vegetable garden master, runner, plant expert, Energizer Bunny, and most importantly friend, planted several types of sunflowers each year. They were plentiful. I got a kick out of watching the sunflowers turn their happy little faces toward the sun, and then twist around as the day progressed and the sun moved. Some of the sunflowers were huge too!
Present Day:
A dear friend in town, Super Mom, planted three sunflowers in a pot and brought them to me early this spring. She said that the flowers represented The Trinity: The Father, The Son and The Holy Spirit. They were only a couple of inches high at the time of delivery. After they grew fairly tall, outgrowing their container, I was left with a conundrum, where should I transplant them so that I could get the best view of the flowers once they bloom? The back of our house faces directly south, with the sun coming from the direction of my backyard neighbor. I have a longish perennial garden across the back of the back yard, but if I place the flowers in this garden, I would only enjoy stems, leaves and the the back of the flowers' heads. I also have a smallish perennial garden right out my kitchen window that faces the backyard, with lawn between the two gardens, but with same problem of the flowers' back toward the window. Well, to make a long story longer, I placed them outside the kitchen window because it was closer, and when I was on the lawn, I would be looking directly into the flowers. However, something strange happened. The small 3 foot sunflower bloomed about 6 days ago, and it faces the sun. BUT, one of the two 6 foot sunflowers just bloomed and it is facing toward the kitchen window! Every other flowering plant in my garden, and that is a substantial amount, either face or grow toward the sun. But, not this sunflower, it proudly stands in a watchful position, smiling at me through the kitchen window, providing all day enjoyment viewed from inside my house. Is this one sunflower The Father, The Son or The Holy Spirit?

Monday, July 12, 2010

Game On...

When you can't sleep at night because your mind is racing, there is nothing better than a pair of canary yellow Playtex Living Gloves and a couple of dirty bathrooms.

Tomorrow is chemotherapy day 1. I've had a lot of bad words swirling in my head that all rhyme with modes of transportation: ship, van and even truck. But, I swore of swearing, so I have to keep it clean. Earlier today I was down and out about having poison injected into my body for two hours, one that kills a lot of healthy cells, but once I started cleaning the bathrooms tonight, I got my mojo back, and thought screw you chemotherapy, you aren't getting the best of me. If needed, I now have a nice clean place to puke in, but guess what, not going to happen. (Are you believing this tough talk?) It seems the more I talk tough to myself, the tougher I feel. We'll see if it lasts through the night and into tomorrow.

Today Justin and I went to the hospital to get blood drawn and meet with a nurse practitioner. I thought we were meeting with this woman to go over the four new medications plus the shot I must give myself. I was expecting her to show me how to administer the shot. Evidently this was not the reason for the meeting. Still, neither of us of clear as to the purpose of this appointment. The nurse practitioner, NP, walked in, introduced herself and then started asking questions off of a list. When she asked if I was sleeping, I said no. She asked if I am taking Adivan to help with sleeping, and I replied yes, but it doesn't help. She moved on to the next question without ever addressing the sleep issue. Both Chubba and I felt that she was a bit arrogant and acted like she was in a hurry. Clearly, she did not get the Mass General Manual on how to treat patients/clients/customers. (I have worked with some nationally recognized surgeons at Mass General that didn't even show a hint of arrogance.) NP began examining me by pushing down on the nodes around my collar bone - ouch! I just had a port-a-cath inserted. I explained this to her, and she wondered why the incision was shiny. I can't believe that she has never seen the clear glue-like substance that is put over stitches. After listening to my lungs, she began pushing on my abdomen. After about four hard pokes, I told her that my stomach is a little sensitive because I recently had a TRAM flap. She was clueless. Obviously she did not read my chart before she came into the room. She was completely unprepared. When I asked her about the phone call I received on Friday from one of her associates regarding one medication that the insurance company is quibbling over with the hospital, she looked at me like I was speaking Latin. She could not find the list of medications in my notes, she had no idea what medications I was taking along with the chemotherapy, so she had to go ask a nurse. The medication is a very important anti-nausea medication that I take up to one hour before the chemo, and two days following. Once again, she was clueless. She never explained the reason for the appointment, and she clearly did not do her homework before she walked into the room. I am going to e-mail my oncologist and ask for another nurse or nurse practitioner. I do not want to meet with NP Clueless again. I have no confidence in her abilities. Wow, this will be number 5 that I have fired. As I have said before, settle for the best.

Tonight, before dinner, Riley came up to my bedroom in tears. She is very worried about me, chemotherapy, getting sick, and how it will affect me. Riley is my sensitive little flower; she maintained a brave face a lot longer that I thought she could. She is going to soccer goalie camp next week in Connecticut, and she is worried about leaving me. I think getting away is exactly what she needs.

My sister called tonight to see if I bought a new pair of shoes for my chemotherapy tomorrow. What a great idea! No wonder she has so many pairs of cute shoes! Since I have four treatments, maybe I should buy a new pair before each appointment. However, I did re-pink my hair. Photo to be posted soon.

My chemotherapy appointment is at 10a.m. tomorrow, Tuesday, July 13. It is a two hour drip. But with this anti-nausea medication snafu, it will probably be a 3-4 hour appointment. It all seems surreal, but it's game on! Keval vs. Chemotherapy.

If religion is part of your life, please say a little prayer for us. If religion isn't your thing, please wish on a big bright star for me - that is, after you make your winning lottery wish. Actually, I'll take one of those lottery wishes too.

Saturday, July 10, 2010

Another Day, Another Day Surgery...

Yesterday I had a day surgery to insert a port-a-cath. This device will be used in lieu of a vein for receiving chemotherapy.

I arrived at Beverly Hospital, 15 minutes down the road, at 7:45 a.m. for an 8:00 appointment. Chubba and I only had to wait in radiology for about 5 minutes before a nurse came to escort me to the pre-op area. (I find it interesting that the radiology department at Beverly Hospital has two waiting rooms, just across the aisle from one another. One waiting room is lit with the usual hospital bright fluorescent lighting, has the typical sea bluish upholstery, the walls are painted a yellowish white, there is a large tv is mounted in the corner - always on, and an available computer sits on a sterile-looking desk on one side. The other waiting room is about one-third the size, has soft recessed spot lighting, the color of the upholstery is warm fall colors, the walls are painted a warm taupe color, and the mounted tv is rarely turned one. For some strange reason, the majority of people sit in the large, bright room that is so unflattering, and makes everyone look like they feel miserable. No surprisingly, I always sit in the small room with the warm, soothing colors - it feels more like someone's living room than a waiting room. I think that I have only seen one other person sit in this room during my 6+ visits to radiology.)

I think there was only one other person in the pre-op area when I arrived. I am glad that I brought a book because I didn't get wheeled into the operating room until 10:10. My eyesight may be going, but my hearing is still keen because I could hear a lot of stories going on around me. One elderly woman who sounded like she was in her 80's, had to be sent home before her procedure because she drank water in the morning before she went to the hospital. She was confused by her instructions, and thought she was supposed to drink water. The nurse explained to her that is she drank water, that she could vomit during the procedure. Gross. Her son had to pick her up. I felt sad for her.

One one side of me was a girl that sounded like she was in her 20's or early 30's that had a ton of things going on with her. I heard her father say that she just got out of the hospital after a 6 week stay. When the radiologist asked the routine questions, that usually have "no" for an answer, she had "yes" with long explanations. For example, when asked if she's allergic to any medications, the answer was yes - and then a bunch of words (I tried to not listed to closely, but she was just on the other side of the curtain.) She had problems with some of her organs, and all I could think of was how sad this must be for someone so young to have so many physical problems, and how lucky I am to only have breast cancer. Sounds strange, doesn't it? - lucky to only have breast cancer?

I know that I was wheeled into the operating room at 10:10 because a big digital clock with electronic red numbers hangs on the wall. It has the hour, minutes and seconds running. I don't know why, but my first thought upon seeing this clock was, "I wonder if they changed to a digital clock from the traditional clock so that they can more accurately assign the time of death." Morbid, I know, but I wasn't thinking as if it would pertain to me and this procedure. After they wheeled me into the operating room, I was transferred onto the operating table. Did I mention before how narrow this operating tables are? The table and room were both very cold. One of the nurses brought his iPod, and asked what kind of music I would like to listen to and that I find relaxing. He had everything except country & western. I chose the blues. He had a nice collection of the was perfect. Once I was strapped on the table, it was on with the procedure. I was given anesthesia that made me sleepy, but not totally put me under. I felt like I was asleep and awake at the same time. My body was draped from head to toe, and they put a plastic plate above my head so that the drape made a little tent over my head. The doctor inserted a needed into a vein in my neck, and then followed it down into my chest where he inserted the port. It is on my right side, about 4-5 inches below my collar bone. I have two bandage, one on my neck and one on my chest. They only part of the procedure I can remember if the doctor pushing down hard on my upper chest. He must have been inserting or placing the port at that point. There was one oops during the surgery; the blood pressure cuff was put on my left arm. Because of the recent mastectomy and lymph node removal, I am not supposed to have blood drawn from my left arm, nor have my blood pressure taken on this side. I mentioned this after the surgery when they were removing everything, and we all kind of said "oops." I guess I should have remembered to tell them during the set up to the procedure. Oh well, no harm done.

I have high regards for the nurses at Beverly Hospital. I had my gall bladder removed there four years ago and thought the nurses were great. Both Molly and Riley have spent overnights at Beverly Hospital for complications with asthma and flu - nurses were great. My experience yesterday was that the nurses at Beverly Hospital are still top notch!

The recovery was fine, and Justin drove me home around 1:00 p.m. I went straight to sleep and woke up around 5:00p.m. I had a head ache and neck pain when I awoke, but Tylenol took care of it. I puttered around they yard, dead-headed some plants, picked up some beach towels. We ate dinner and were watching Ocean's Thirteen when it hit. (By the way, isn't Andy Garcia so sexy?) I got very sick. Without getting into the ugly details, I was throwing up while sitting on the toilet. Yes, gross. I had unbelievable cramping and stomach pains. After 30 minutes of this fun and games, and sweating out of every pore, we decided to go to the emergency room. All of this sickness was due to the anesthesia. (Anesthesia has made me sick several times before this procedure.) Riley was having terrible problems with asthma, so we thought she should come along to be checked for pneumonia...a family outing together! At 10:20 p.m. my wonderful neighbor, Biz, came over, picked up Molly, and the three of use headed off to the emergency room. On the way to the hospital, both Riley and I started feeling better. The cold air of the air conditioner helped her breathing. (I forgot that her asthma needs cold air, and she had been sitting in her warm, humid room all day.) I, on the other had, was shivering and teeth chattering from the air conditioner. I put two jackets over me. However, my cramping had stopped for 20 minutes by now, so we decided a block before the hospital to turn around and go home. With medication and my air conditioned bedroom (the only room with air conditioning) we both made it through the night, and avoided a long night in the emergency room.

I am still sore and tight on the left side from the reconstruction, and now I am sore and tight on the right side from the port-a-cath. I feel like a train wreck.

So reality is sinking in - this chemotherapy thing is really going to happen. Three more days.

Whacky thought for the day...
Who came up with the saying, "sick as a dog?" My cats throw up way more that our dogs ever did.

Wednesday, July 7, 2010

CA Here I Come...

Today I received a large white styrofoam box via UPS. It is about 12 inches high, 12 inches wide, and 18 inches long, with very thick walls. Inside it held two tiny preloaded syringes, a small bit of bubble wrap, and an ice pack. The syringes are preloaded with medicine that I am to inject the day after chemotherapy. Each one of these syringes is worth $1000, but fortunately my insurance pays for $970, and I pay $30 for each shot. I am always amazed at the cost of medication. What in the world would makes each of these shots worth $1000? The medication is supposed to increase my white blood cell count after each chemotherapy treatment. I suppose that increasing your white blood cell count after it has been wiped out is worth $1000.

I learned that I have been assigned the CA drug instead of Toxel for chemotherapy by the people controlling the study. This is the type of chemo prescribed for me before I agreed to be randomized in a study. It is a 2-hour drip, with the complete laundry list of side effects. (Is it ironic that the girl from California, living in New England gets assigned CA?)

I hesitantly admit that I am getting a bit wigged out over the chemotherapy - no pun intended. I am much more stressed than I was before the surgery (and kind of scared too.) The risks and side effects for the surgery took up only two lines on the consent form. I also felt that I knew what to expect going into the surgery, even though the recovery was much longer than I had hoped. But with chemotherapy, no one knows exactly how I will respond to the medication. The side effects are known, but are not clear as to whether or not I will experience some, all or none of them. I think it is safe to say that I will experience some of them, especially the nausea.

It is only 6 days until my first chemotherapy treatment. I think about it all day and night. I can't sleep, I'm nauseous, and today Molly told me that I am looking "glum." She was right on target with that comment.

Cancer really sucks.