In a phone call from the doctor yesterday it was confirmed that the three fatty globs removed from near my triceps in outpatient surgery last week are, in fact, completely benign tumors and have no trace of cancer whatsoever. Yay!
On another topic, I was also told that my daily anti-nausea meds were going to be changed, which makes me a little bit nervous. Rather than being nauseated, I have lately been experiencing more of what I would describe as just bad heartburn, an upper g.i. tract kind of heat. They had told me previously that I could just take an OTC antacid for this. I have and it hasn't been helping. So the plan is to get something stronger for the burn and see if that helps. As long as the uncontrollable vomiting doesn't return (which it hasn't for this second round of chemo), I am willing to try new scrips.
Now, if they could only come up with a prescription that would make all of my food and drink taste "normal" again, I would feel like I have hit the pharmaceutical jackpot.
Thursday, January 29, 2015
Monday, January 26, 2015
Crayola Doesn't Make These Colors
Some very strange things have been happening to me while undergoing chemotherapy. I mean strange in addition to excessive vomiting ( we seem to have that mostly curbed), hair loss, a strange of sense of taste (it's like I have had a tongue transplant and the taste buds are different, a twisted sense of smell, etc.
These are all things I had fairly regularly heard of associated with chemo. I was not prepared for how it has affected my eyes.
After the first round of chemo I noticed that my eyes had problems focusing. I figured I would be able to happily read my way through a very tall stack of books to keep myself busy as I went through treatment. Buuzzzzzzz - wrong. I can read some, but my focal point doesn't even stay in the same spot. Add that to the general jitteriness I felt in all of my limbs and I just couldn't hold a book still unless there were pillows propped around my arms. Oh well, I didn't really have the attention span to get into a good novel anyway, so I started reading through some of the non-fiction I had waiting in small bursts.
After the second round of chemo, and with all of the new anti-emetics I am on, my eyes are definitely on drugs. My left eye is completely out of whack. From five feet away a person will have four eyes. All of them are slightly out of focus in different degrees. But the strangest thing happened when my husband was driving us home from an athletic event in another town.
You know how headlights and taillights always have kind of a starburst affect at night? That was happening to me, but in a greatly magnified manner. As headlights approached, they were huge chrysanthemum-like burst of intense white lights - almost as if I was seeing a firework explode on the ground right next to me. Many, many pointed star points on the outer rim of the burst. Also, these multiple tips of the burst had very cool colors burning on the edges - blues, purples, greens. Newer, halogen headlights seemed to be more colorful than an older style headlight. Very strange and beautiful. It was happening with the red taillights also, but it was not as intense as the white headlights, and there were no colors on the edges.
I had mentioned the first differences to my oncologist and he said that chemo can affect every single process in your body. He did tell me to not go out and buy glasses, though, because it would very likely be just like hair loss. It will almost certainly come back, but it might not be the same as before chemo. He told me to buy cheaters to read if I want, but don't get prescription lenses, because it will probably change after chemo is done. I also asked my sister who worked for eye doctors for years and years and she said the same thing - could be the chemo, could be the hormones that are changing during that time. Get glasses if you want, but you will likely need a different prescription by the time you are done with treatment.
I have not worn glasses, not even cheaters, my whole life. If I need to get some prescription glasses after treatment is done, I already have my eye on some vintage, cat-eye frames that will hold new lenses.
These are all things I had fairly regularly heard of associated with chemo. I was not prepared for how it has affected my eyes.
After the first round of chemo I noticed that my eyes had problems focusing. I figured I would be able to happily read my way through a very tall stack of books to keep myself busy as I went through treatment. Buuzzzzzzz - wrong. I can read some, but my focal point doesn't even stay in the same spot. Add that to the general jitteriness I felt in all of my limbs and I just couldn't hold a book still unless there were pillows propped around my arms. Oh well, I didn't really have the attention span to get into a good novel anyway, so I started reading through some of the non-fiction I had waiting in small bursts.
After the second round of chemo, and with all of the new anti-emetics I am on, my eyes are definitely on drugs. My left eye is completely out of whack. From five feet away a person will have four eyes. All of them are slightly out of focus in different degrees. But the strangest thing happened when my husband was driving us home from an athletic event in another town.
You know how headlights and taillights always have kind of a starburst affect at night? That was happening to me, but in a greatly magnified manner. As headlights approached, they were huge chrysanthemum-like burst of intense white lights - almost as if I was seeing a firework explode on the ground right next to me. Many, many pointed star points on the outer rim of the burst. Also, these multiple tips of the burst had very cool colors burning on the edges - blues, purples, greens. Newer, halogen headlights seemed to be more colorful than an older style headlight. Very strange and beautiful. It was happening with the red taillights also, but it was not as intense as the white headlights, and there were no colors on the edges.
I had mentioned the first differences to my oncologist and he said that chemo can affect every single process in your body. He did tell me to not go out and buy glasses, though, because it would very likely be just like hair loss. It will almost certainly come back, but it might not be the same as before chemo. He told me to buy cheaters to read if I want, but don't get prescription lenses, because it will probably change after chemo is done. I also asked my sister who worked for eye doctors for years and years and she said the same thing - could be the chemo, could be the hormones that are changing during that time. Get glasses if you want, but you will likely need a different prescription by the time you are done with treatment.
I have not worn glasses, not even cheaters, my whole life. If I need to get some prescription glasses after treatment is done, I already have my eye on some vintage, cat-eye frames that will hold new lenses.
Wednesday, January 21, 2015
Fatty globs are GONE!
Yesterday on Tuesday January 20th, I went in for outpatient surgery to remove the fatty, benign tumors from underneath the tricep, near the inside elbow of my right arm. I didn't know until I talked to the surgeon that morning that they had decided to take them out of both arms (I have a smaller one in the same spot on the left arm. Again, the worst case scenario is that these are lymph nodes that are out of whack and not in the exact right spot, As the surgeon said with a big grin on his face, "If these turn out to be lymph nodes with breast cancer cells in them, you're going to have several papers written about you!"
Yippee! I did not have a general, just a local, so it was a little strange to be awake for most of that. The positioning was weird as they had to hold my arms kind of over my head as well, pinned down to trays like flying buttresses. But it went quickly and and I was back at Michelle's by about noonish and soon she drove me home. Will helped me changed the first layer of bandages this morning and the final layer will come off in four days.
Am still very happily to be nausea free, even with the hydrocodone that they always give me after surgery. That has always been a bucket-worth med for me, as well as any other narcotic pain relievers. Not this time.
We are supposed to hear by Friday what pathology says about the growths.
Yippee! I did not have a general, just a local, so it was a little strange to be awake for most of that. The positioning was weird as they had to hold my arms kind of over my head as well, pinned down to trays like flying buttresses. But it went quickly and and I was back at Michelle's by about noonish and soon she drove me home. Will helped me changed the first layer of bandages this morning and the final layer will come off in four days.
Am still very happily to be nausea free, even with the hydrocodone that they always give me after surgery. That has always been a bucket-worth med for me, as well as any other narcotic pain relievers. Not this time.
We are supposed to hear by Friday what pathology says about the growths.
New and Improved chemo ... whew!
The second round of chemo on Friday the 16th was accompanied by an additional horde of anti-emetics, and for the most part they did the trick. I had Zofran, just like the first time, but got a double dose this time, in addition to EMEND, which is the heavy hitter that lasts for three days, and then Ativan mixed with the steroid Decadron to help boost it all.
I was so out of it I had a hard time walking straight, focusing my eyes, and still have a hard time typing. I vomited once Sunday and once Monday, so I am scoring this round a win.
I was so out of it I had a hard time walking straight, focusing my eyes, and still have a hard time typing. I vomited once Sunday and once Monday, so I am scoring this round a win.
Friday, January 16, 2015
Thursday, January 15, 2015
Fatty globs of what?
Yesterday was my ultrasound on
what the doc thinks is a lipoma (benign, fatty tumor) on the upper
inside of my right elbow. I have another one on my left arm, but it is
higher and more towards the back of my arm, right over the tricep.
I
discovered these myself after I was looking at a chart of the lymph
system. I know that finding swollen lymph nodes would be a very bad
thing when associated with breast cancer, and that this is how the
cancer can spread to the rest of your body - through the lymph system. I
know the lymph system travels the entire body, but I didn't know that I
had lymph nodes just above my elbows. I thought all the ones near your
breasts were just in your armpits, across your collar bone, and in your
neck. The chart shows more of them on the inside of your arm, just above
the bend of your elbow.
I
knew that I had a lump on the inside of my upper right arm. It has been
there for several months. Maybe a year or more. It has never bothered
me. I always assumed it was some sort of fatty deposit. I have a fatty
deposit near my left wrist, and again, it's never bothered me.
I knew a man who had so many of these that he looked like he had marbles just below the surface of his skin all up and down his arms. He told me his doctor had told him that they were fat deposits and not to worry about them unless they caused him pain of some kind. I did what anyone would do and accepted his doctor's diagnosis for my own singular, fatty deposit on my wrist.
When
I saw on the diagram that there were lymph nodes above the elbows I
immediately palpated the one on my right arm. It definitely felt larger
and was definitely more sore and tender than it has been in the past,
but only when manipulating it. Then I started feeling all around the
back of my left arm, and was completely surprised to find another
tender, swollen area, this one higher on my tricep and more at the back
of my arm.
Since
that makes a pair, I have to assume that maybe my lymph nodes are just
in the wrong spot. I called my oncologist to let him know. He told me that in 23 years of treating cancer he had never seen breast
cancer cells travel to the elbow lymph nodes. He explained the lymph
nodes kind of work like little, filtering sponges, catching and trapping
things before they move through the body's lymph system. This is why
the cancer cells are "caught" in the armpit, collarbone, and neck nodes -
they are the ones closest to the breasts. They have repeatedly palpated
those three areas and ask about them every time I have been in to see
them, but no one has ever checked or asked about inside my elbows.
I was making a trip to DSM the following day and asked if I could just stop in and have him take a quick look. He said sure, so I did. He examined all of the usual node locations as he has done in the past, with the addition to the elbow ones. The one on my left arm is small - I had to find it twice and show him exactly where to palpate. He repeated all of the same information he had told me on the phone: It is highly unlikely that first of all, those are even my lymph nodes, and second of all, that they would have filtered and collected breast cancer cells that would have run right by the armpit nodes. Just to be certain he said they would do an ultrasound but on the right arm only, since he can barely feel the one on the left.
While
I was laying on the table talking to the ultrasound tech (her name was
Karri), I was able to get a little information out of her. She told me
the size was 2.5 cm, or about an inch. She also warned me when she was
going to press down fairly hard on it, but that was something she was
supposed to do. I asked why and she explained that they want to know if
the tumor compresses or if it stays fairly hard or firm. Mine was
staying firm. It was a nice, short ultrasound visit.
After my oncologist had a chance to review the ultrasound and talk to the radiologist late yesterday afternoon, he called me. He told
me that he still thinks this is a lipoma. He said there is no blood
supply to the tumor, which is about 1" across. It does not "squish" when
being compressed, which is good. However, the ultrasound revealed
another, smaller tumor under the big one and this one does have a blood
supply, and it does "squish" when the bigger tumor is being pressed into
it. What that means is that this secondary tumor is alive and growing.
The radiologist (and no one else for that matter) can't tell simply from
an ultrasound what these tumors are or are not. His position is that
since the patient has a history of cancer, all abnormal growths should
be looked at as having the potential of being cancerous. (It took me a
minute while listening to the oncologist relay this to me that he was
referring to me as the "patient".)
The only sure way to know is to do a needle biopsy on both tumors, or to do outpatient surgery (probably even just local anesthesia) and just remove them both. The oncologist said if it was his decision, he would have the surgery done so that they could do a complete pathology on both tumors and have definitive knowledge on both. Again, he stated that he would be "stunned" (his word) if either of these show cancer cells.
I
agreed with him and want to take them completely out. I know I have at
least one more in my left arm. If the pathology is clean on the ones
that are removed, then I won't have to worry about the one that remains.
I will meet with him before my chemo treatment this Friday and we will
try to get this outpatient surgery scheduled between my chemo
treatments, but obviously not during the time frame that my white and
red blood cell counts will be way down.
That is all I know so far on the "fatty globs".
Wednesday, January 14, 2015
Pink is NOT Pale Red
I have never really liked the color pink. I have always thought it was too girly and feminine to suit me. I think my mom must have felt the same way because I cannot remember ever seeing a picture of me in pink clothing as I was growing up. I probably had some pink clothes at some point, I just don't remember them. I can remember all of my sisters wearing pink - my older sister even wore a pink sweater with very cool silver zippers in one of her school photos. Not me. I was blue, green, brown, and sometimes purple.
All cancers now have an assigned color - primarily for marketing purposes, which I think is rather clever. It does make it easier once you have identified yours or your loved one's cancer; you know what color the ribbon needs to be to wear on your lapel. You know what color scarves and t-shirts you need to buy now, so everyone can see at a glance which cancer you are associated with.
Bright pink is of course the color of breast cancer. Orange is for my brother's leukemia; colon cancer is dark blue; I saw one that is new to me - a black and white zebra stripe for "carcinoid cancer". Most charts list lung cancer as white, but I saw a couple that listed the colored ribbon for lung cancer as "clear" (that will suck for the marketing and promotions professional). Some charts listed as few as a dozen cancers. One chart listed the colors for 32 different cancers.
I don't want a collection of bright pink scarves, hats, and clothing. This has nothing to do with identifying with the breast cancer crowd; it has everything to do with just not liking the color.
I have always kind of been a fan of red - intense, bold, fiery, in your face RED. Pink is a whole lot of white, with a drop or two of red. Red is a primary color with no apologies. Nothing else makes red as it is one of the untouchable triumverates of the primary colors - red, yellow, and blue. With these three colors, you can make all other pure colors. To get pink, or any other pastel colors, you need a bucket of white.
In browsing online for hats and scarves, I saw a range of pinks to be had, from a very, very pale pastel pink, all the way up to a very intense fluorescent pink. Now fluorescent pink I could get into because it is bold and strong, not weak and white-y.
I did not see much that I was sure would fit me when googling "women's pink breast cancer hoodie". I already know from experience that when most women's sizes get bigger, it is in diameter and circumference, never in length. I have learned that the sizing on a men's XL or XXL is what is comfortable on me.
So I was in Joe's USA Athletic Apparel (actually made in Honduras, if you care) and spotted a fluorescent pink pull-over hoodie. While I would much rather have a zip-up hoodie than a pull-over, again, I could not find one in an intense pink in a size that I could be relatively certain would fit me. I figured I ought to have at least one piece of solid pink apparel to recognize my new breast cancer tribe, so I bought one.
It arrived the other day, and it is not at all the fluorescent pink, as shown and claimed in the website. However, it is not pastel, either. It is more like a dark watermelon pink. I don't expect to wear it very much, so I can deal with the color.
Some of the scarves and hats I have acquired do have a little splash of pink in a variety of intensities, so I can wear any of those with my new pink hoodie. I might have to wear a combination of blatant pinks the next time I go to see a middle school event. Even insensitive, preadolescent boys should recognize that pink screams "breast cancer". Not at all sure that it will keep them from making incredibly insensitive comments, though.
All cancers now have an assigned color - primarily for marketing purposes, which I think is rather clever. It does make it easier once you have identified yours or your loved one's cancer; you know what color the ribbon needs to be to wear on your lapel. You know what color scarves and t-shirts you need to buy now, so everyone can see at a glance which cancer you are associated with.
Bright pink is of course the color of breast cancer. Orange is for my brother's leukemia; colon cancer is dark blue; I saw one that is new to me - a black and white zebra stripe for "carcinoid cancer". Most charts list lung cancer as white, but I saw a couple that listed the colored ribbon for lung cancer as "clear" (that will suck for the marketing and promotions professional). Some charts listed as few as a dozen cancers. One chart listed the colors for 32 different cancers.
I don't want a collection of bright pink scarves, hats, and clothing. This has nothing to do with identifying with the breast cancer crowd; it has everything to do with just not liking the color.
I have always kind of been a fan of red - intense, bold, fiery, in your face RED. Pink is a whole lot of white, with a drop or two of red. Red is a primary color with no apologies. Nothing else makes red as it is one of the untouchable triumverates of the primary colors - red, yellow, and blue. With these three colors, you can make all other pure colors. To get pink, or any other pastel colors, you need a bucket of white.
In browsing online for hats and scarves, I saw a range of pinks to be had, from a very, very pale pastel pink, all the way up to a very intense fluorescent pink. Now fluorescent pink I could get into because it is bold and strong, not weak and white-y.
I did not see much that I was sure would fit me when googling "women's pink breast cancer hoodie". I already know from experience that when most women's sizes get bigger, it is in diameter and circumference, never in length. I have learned that the sizing on a men's XL or XXL is what is comfortable on me.
So I was in Joe's USA Athletic Apparel (actually made in Honduras, if you care) and spotted a fluorescent pink pull-over hoodie. While I would much rather have a zip-up hoodie than a pull-over, again, I could not find one in an intense pink in a size that I could be relatively certain would fit me. I figured I ought to have at least one piece of solid pink apparel to recognize my new breast cancer tribe, so I bought one.
It arrived the other day, and it is not at all the fluorescent pink, as shown and claimed in the website. However, it is not pastel, either. It is more like a dark watermelon pink. I don't expect to wear it very much, so I can deal with the color.
Some of the scarves and hats I have acquired do have a little splash of pink in a variety of intensities, so I can wear any of those with my new pink hoodie. I might have to wear a combination of blatant pinks the next time I go to see a middle school event. Even insensitive, preadolescent boys should recognize that pink screams "breast cancer". Not at all sure that it will keep them from making incredibly insensitive comments, though.
Monday, January 12, 2015
First Chemo Treatment, aka Red Death
I was told my first chemo treatment would take about 3-4 hours total and since I was scheduled at 10:30am, I was told I could bring in a lunch if I wanted to.
"Don't people get nauseated during chemo? Wouldn't the smells bother other patients?" I asked, kind of surprised at the thought of people bringing in their own lunches. "Oh, we give everyone anti-nausea drugs before the chemo drugs, so almost nobody gets sick while they are here." I took it as comforting and thought to myself,"Wow, they really have this chemo/nausea thing down to a science." I had already convinced my self that chemo was not going to make me sick. After all, it didn't make my brother sick during his battle with Acute Myeloid Leukemia, and we were so alike in our DNA that I am confirmed as his marrow match should he ever need a transplant. (Foreshadow: first set of alarm bells going off in the background.)
The Chemo Lounge, as I have christened it (in my mind it has a sweeping script of skeleton red neon covering one brick wall), consists of a large room with seven recliners for patients and one small nurses station in the corner. Four of the recliners are extra-large, brown faux-leather Lazy-Boy rocker/recliners, looking for all the world like chocolate marshmallow seating. These are the deluxe units that recline to an almost horizontal position with foot rests that extend an extra 4 inches for extra-tall patients. The other three recliners are blue utilitarian units that do not rock and barely recline at all. They are minimally padded and the arm rests are barely wider than my forearms. They look like Amtrak or Greyhound seats.
I received the anti-nausea meds first. No one had a smelly lunch with them at that point. I wasn't feeling any nausea before the drugs were administered. The two chemo drugs I received are called Adriamycin and Cytoxan, a fairly common duo and in fact, the same pair that Joan Lunden received during her chemo treatments. My nurses did not tell me that; I learned that when I watched some of Joan's videos on YouTube.
Cytoxan is clear. Adriamycin is a dark, reddish color with a slightly orange tinge to it. It is nicknamed Red Death. I understood why later that same day. (Fair warning number two. You will receive no other warning.)
The warnings and side effects of Red Death are pretty much the things you would read on a sheet of warnings about any standard exposure to radioactive elements in this world: If you get it on your skin, wash the area with soap and water every fifteen minutes and tell your caregiver. If you feel stinging or burning in your skin at the injection site, tell your doctor immediately. Apply ice to the skin for fifteen minutes, four times each day to relieve pain or swelling. Do this for three days. If you have blisters, sores, or a wormy discharge at the injection site, tell your doctor immediately. (Just kidding about the wormy discharge.)
I do not have a port so the Adriamycin is "pushed" directly into my IV by one of the chemo nurses. Two large syringes full of Red Death arrived at the Chemo Lounge, special delivery in a bag marked with skulls and crossbones just for me. Before Nurse A unpacked it, she put on her bullet-proof vest/lead shield, heavy rubber gloves up to her elbows, and a 270 degree full-face shield. (JK about the bullet-proof vest/lead shield, but she did put on a new gown just to administer this drug.)
Before she started, she reminded me that it was known as Red Death. "If you can feel any kind of burning in the area around the injection let me know right away. Basically, this is so nasty that if you happen to have weak vein walls, it can burn right through them and collapse the vein and then it will be going straight into the tissue, and trust me, you don't want that to happen."
How dare she imply that I didn't trust her? Our young, but very intimate nurse/patient acquaintanceship is 100% based on trust. I had no reason NOT to trust her. Good grief, I was letting her shoot me up.
Plus, right after trust, I am all for blatant truth and honesty, especially when it comes to medical procedures. Despite that, I guess I would have preferred a little less scary description there. Kind of like when your dentist says, "Okay, you're going to feel a pinch now," and they stab a needle into your jaw. That's not a pinch. I don't know anyone who can pinch like that.
I didn't have any burning sensations, and, while she was slowly depressing the plunger on the syringe, she was very carefully looking at her watch. I asked why this med had to be "pushed" the way she was doing it and she replied without looking up, "Because Red Death would eat right through any type of flexible plastic that the drip bags are made from. Within five minutes it would dissolve that lightweight plastic and burn a hole in the tile and sizzle straight through to the next floor." (JK again - she just said statistics show that pushing it has the best results.)
Nurse A was not bothered with any more of my questions. I did not want to break her concentration of looking at her watch and watching the milliliters being pushed. She was just as careful and cautious with the second syringe. I think we were both relieved when she was done, the syringes were in their own radioactive waste bag with skulls and crossbones, and all of her protective garb was thrown in a special bin.
Nurse B reminded me that I needed to drink vast amounts of water over the next two or three days so I could make sure that Red Death did not collect in my kidneys. Just like the veins in the injection site, the danger internally was that it could pool in your kidneys or bladder and eat right through your organ walls. "Keep drinking water," she said. "In this case, you cannot drink too much water. It does not dilute the drug's effectiveness at all - drink, drink, drink. You will probably see some red urine and red stools over the next few days. That is normal. If you see blood in the toilet, that is not normal - call us immediately if you start passing blood."
"How will I know if it is blood or if it is from the Adriamycin?"
"Oh, you'll know. If it is blood, that means the Adriamycin has eaten through something internally and when you urinate it will feel like you're peeing fire." Now THAT is some descriptive word work. Couldn't wait to share that on my blog.
The bag of Cytoxan was administered last. While this was being done Nurse A rolled over the plastic tower of bins filled with (mostly pink) chemo hats. I saw other patients paw through the different bins and try some on. I didn't think that I would see any hats I would like, let alone hats that would fit.
As an experienced shopper of clothes in sizes that most people don't wear, I know my size is typically found on either the shelves closest to the ground, closest to the ceiling, or on the clearance racks in back. So I went straight to the bottom bin in this rolling tower filled with hats that were lovingly homemade, hand-knitted, and hand-crocheted. Surprisingly, I found a few that were big enough for my head, and they were even made in some bright colors as well as some non-pink neutrals. One was hand-crocheted with a thick, white, pearl-y yarn that I swear was fitted to a basketball. This might be my stock, sensible Iowa winter cap.
The second selection was a machine-knitted skull cap, fairly thin, and made from a tan/khaki color, but it also had ultra-thin gold threads running through it. This one will work for the Golden Globe Awards because it perfectly accents my gold, sequined gown.
My third choice was crocheted out of a lovely, jewel-colored stretchy, chenille. With a palette of navy blue, hot pink, pale pink, rich burgundy, and a silvery sky blue, it was the perfect size for my head. It fits the depth of my cranium so well it almost engulfs my head like a 1930s swim cap. I feel like can dive into a swimming pool with my synchronized swimming teammate Ethel Merman, who would be wearing a matching jewel-colored swim cap, and immediately perform intricate maneuvers and poses underwater. (Author's note: I have a fear of water deeper than I am tall, so this hat must have magical powers. Ethel Merman died in 1984 of inoperable brain cancer. RIP, Ethel.) When I tried this hat on later in front of my sister, I told her I felt like an exotic bird in it, especially because of the variegated colors, but also because it has little flaps and fringes that will flutter in even the slightest breeze. She just laughed at me.
When the IV was wrapping up, the nurses told me that the doctor had called in a couple of prescriptions for anti-nausea meds. Nurse B said, "What we gave you here in your IV to fight the nausea will last 6-8 hours. It is 2pm right now, so you should be okay until 8 or 10 o'clock tonight. If it were me, I wouldn't take a pill tonight, I would wait until morning."
"I wouldn't," said Nurse A. "I would take a pill tonight just in case I needed it before it was the middle of the night." I told them I would be taking a pill. My history of nausea with all kinds of narcotic pain relievers is long and colorful - they always makes me sick to my stomach. Even if I get anti-nausea meds in my IV and have a patch behind my ear during surgery, I still get sick. After my last knee surgery I stopped taking the pain pills just a day or two after surgery. I learned I can manage the pain if I can feel it, but I can't manage the nausea and vomiting.
Nurse A explained that the two different meds (Compazine and Zofran) could be used simultaneously once every 8 hours, but staggered, so each med could overlap the other. "We never really know which anti-nausea meds will work best for which patient, so this is kind of a trial and error until you figure out which one will work the best for you." (Cue second set of alarm bells going off in the background.) I was just hoping that I would have time to pick-up my prescriptions and buy a few groceries before I got home.
I felt fine during the whole process. Again, this is what my brother kept saying about his chemo treatments. He felt fine. Other patients were done with their treatments earlier than me, so they were allowed to get up and go. New patients came in and filled the empty chairs. One woman did bring a Burger King lunch in with her. As I saw her come through the doorway with it I wondered if the smell would make anyone sick or not. It didn't. I would have been upset if it had made me feel ill, because when I am craving a fast-food fix, it is the BK grilled cheeseburgers that I desire.
They gave me a sheet with a long list of clarifying symptoms and side effects that would require immediate medical attention. Aside from a reaction that clearly included symptoms of radioactivity poisoning, the biggest concern was getting dehydrated from vomiting. They offered me some Christmas cookies with bright green and blue frosting that a patient had brought in (my first chemo was the day after Christmas). I thought that was a little odd, since chemo patients need to be concerned always about being exposed to germs. Schools won't even allow you to send homemade treats to school with your kids - they have to be individually wrapped, store-bought crap. I passed on the cookies.
As I was driving away, I was feeling pretty good about the whole process. Not even the tiniest hint of nausea was in my consciousness. I was absolutely convinced that I was going to fall into the small percentage of people who did not get nauseated or sick to their stomach. My brother did say he felt a little bit nauseated once or twice, but that he never got sick to his stomach. Maybe our family just has the tough gene when it comes to chemo.
As it turned out, I did fall into a fairly small percentage group. But it was the group of patients who became violently ill from the chemo drugs and end up in the hospital for dehydration.
I did stop and get the prescriptions along with a few other groceries that we needed. Came home, unloaded my truck, had a normal afternoon, fixed an early dinner for everyone (I was really hungry since I didn't eat lunch), and ate dinner like I usually do.
I do remember thinking that maybe I shouldn't eat a full-sized meal, just in case I got sick later, but I remember what the oncologist said, "If it smells good and tastes good, you better eat while you have the chance. The very next day that same food and drink may not smell or taste good at all." So I ate. A lot. Hey, it was Christmas leftovers with Christmas goodies for dessert.
(OK - I lied about not giving you more than two warnings. This is your third and last chance for the Chicken Exit if you don't want to know these details!)
About 6:30pm I started feeling a little queasy, so I took a Compazine and washed it down with water - which now tasted funny. By 7pm I was laying down in my bed and by 7:30 I was vomiting. For two solid hours, I was vomiting. Not just feeling a little nauseated and vomiting, I was retching. Frequently. I knew I couldn't take the other pill until 10:30 to keep them on a staggered scheduled, but more importantly, I knew if I took a pill of any kind it was going to come right back up, so I didn't.
I was desperately trying to get some water inside of me. Every time I rinsed my mouth out I followed it with a small sip. Once the vomiting was simultaneous with the diarrhea, I knew I would be in trouble fast.
My husband has EMT training, and he's an Army Ranger, so he has a fair amount of medical background for a guy who really carves leather for a living. He was right by me for all of it, changing the buckets, cleaning up the messes, handing me a water bottle and cool washrag. My boys were watching some of the new DVDs they got for Christmas from their sister. I am sure they probably turned the volume up to drown out he noises emanating from the bathroom, even though they were at the other end of our apartment.
Two hours on the toilet holding a bucket in my lap. Every time my body heaved and every muscle in my torso was flexed I was puking, peeing, and pooping (and yes, all three were actually a reddish orange from Red Death, but no blood). My eyes were watering and my nose was dripping. With the exception of my ears, I successfully had fluids being ejected out of every body orifice I had.
I think it was about 9 or 9:30 when I told my husband we were going to have to go to the ER, if for no other reason to get an IV to get some fluids back in me so I could have more ammunition to keep puking my guts out overnight. We told the boys not to worry, that we would be back later.
I brought my cancer folder with me that had the sheets for the chemo meds as well as the prescriptions that I had for the nausea. Once I was on a gurney in the cold ER room under fluorescent lights, I think I really let loose. I didn't have to worry about my boys hearing me, and I was in a hospital, so I was moaning and groaning and my chills and shaking was rattling the hospital bed on wheels. Good thing the wheels were locked or in my deluded state I would have shimmied and synchronized swam right on down the hallway looking for Ethel.
They stuck a needle in my left hand to get ready for the IV if needed, but initially just gave me 10mg of Zofran, which was the second med I had a prescription for but had not yet taken. That did nothing to even slow it down. I don't know how much time passed before they gave me a 50 mg Zofran shot in my butt. After I had this shot, I started to get some relief. At least enough that it was slowing down the retching to only once every 15 minutes. And once I had enough blankets on me and was warm enough to stop the whole-body-shuddering, I could actually rest between episodes. Kind of like contractions during childbirth. They did go ahead and give me an IV bag of saline, just to pump up my fluid levels.
The nurse that was on duty kept saying to my husband, "We're not going to be able to completely stop the vomiting. No matter what, there is nothing we can do to completely stop it. It's a side effect of chemo. It's expected. They did tell you that, right?" Aside from the condescension in her tone, I appreciated her saying that. We knew that coming in, but we were both smart enough to know that dehydration was right around the corner.
The ER doctor wrote me another prescription for Zofran, but a sublingual one, so it dissolves under the tongue and you don't have to try and keep a pill down. They told us the shot should last us until morning, at which time we could fill the scrip. We tried to time our exit from the ER between puke runs, so I was put in a wheelchair and pushed to our truck. I got in the front seat, and as soon as Will started driving I was puking in a bucket again. It maintained a consistent window of about every 15 minutes for a little while. Once we were home, I have no idea what the timing was between the puke runs, but I do know that I was getting a little bit of sleep between them. We got back home a little past midnight, so I am going to guess that I still puked every hour that first night.
The next day was Saturday. My husband filled the new Zofran scrip, but it smelled awful so I couldn't even imagine putting it in my mouth. I tried one anyway, but my mouth was really too dry and sticky (indicating dehydration again) for it to dissolve, so I chewed it up and tried to swallow with a sip from a water bottle - which promptly just started another round of retching. Meds tasted bad. Water tasted worse. I really did not want to go back to the ER so I buckled down and with my husband's help, we forced more water down. I tried to take 2 or 3 sips every time, and my husband would make me take "just one more". It almost always made me vomit again, but I could tell I was keeping enough water down that my mouth was not sticky anymore. He tells me there were a few times that I was so out of it that I didn't even respond when he was trying to get me to drink. I remember at least two times that I agreed to take a sip, but fooled him because the room was dark and I just let it slide right back into the bottle.
For the rest of Saturday I was able to start rotating the Compazine and Zofran pills, and tried to time them so they would be ingested right after I puked, giving them some effective time. At one point I wanted to try some crackers and my husband reminded me that the ER doc had said "nothing but clear fluids for a day". I ignored him and tried some crackers and started puking. Saturday overnight it had subsided to puking once every two or three hours.
Sunday I was feeling much better. Well enough that I wanted to try some crackers again, this time in the hopes they would make me thirsty enough to want to drink more water. Water still was about the worst tasting thing I had ever put in my mouth, so my husband went and bought some apple juice, white grape juice, and Sprite - you know, clear fluids. Every one of those tasted so sweet it was actually worse than the water.
The crackers stayed down Sunday, although I still needed to drink much more water. Now I was a tiny bit concerned because I did see a little blood in my urine. I did not feel like I was "peeing fire", but I called the doctor anyway. I was terrified that with so little fluids coming in that the Red Death had settled in my kidneys and was burning a hole right through it. It turned out it was my period. I have had about three periods in the last two years, and I have to start on the weekend of my first chemo treatment?! Even better, I was out of the necessary feminine hygiene products! Lucky for me, one of my friends called to let me know that she was driving to see me and was only about 15 minutes away. I texted her and asked her to pick up some tampons and pads. Bless her heart, she also brought a carload of groceries including three kinds of deli chicken, a ready-to-bake pizza, ice cream, milk - and lots of other goodies. We were barely able to get all of the things packed into our fridge.
It was good to see her and chat for a bit. She didn't stay long. I was exhausted and was still feeling queasy most of the time, so as soon as I said, "Okay, I have to lay down now," she was up and out. We cooked that XL pepperoni pizza for a late afternoon snack (because it wouldn't fit in the fridge with everything else), and it smelled delicious. I was very happy to eat some very small bites (literally 1 inch square bites) and even though they tasted a little bit weird on my chemo tongue, I was ecstatic that I could keep it down.
With the accomplishment of taking in small amounts of solid food and keeping it down, Monday and Tuesday showed even more improvement. My husband figured out that the Zofran was working much better than the Compazine. We started taking them in a staggered way that was more beneficial for me, resulting in no vomiting, plus, we were both able to get more sleep, during the day and at night. Wednesday and Thursday were nearly nausea-free, and by Friday, one week from chemo, I almost felt normal.
"Don't people get nauseated during chemo? Wouldn't the smells bother other patients?" I asked, kind of surprised at the thought of people bringing in their own lunches. "Oh, we give everyone anti-nausea drugs before the chemo drugs, so almost nobody gets sick while they are here." I took it as comforting and thought to myself,"Wow, they really have this chemo/nausea thing down to a science." I had already convinced my self that chemo was not going to make me sick. After all, it didn't make my brother sick during his battle with Acute Myeloid Leukemia, and we were so alike in our DNA that I am confirmed as his marrow match should he ever need a transplant. (Foreshadow: first set of alarm bells going off in the background.)
The Chemo Lounge, as I have christened it (in my mind it has a sweeping script of skeleton red neon covering one brick wall), consists of a large room with seven recliners for patients and one small nurses station in the corner. Four of the recliners are extra-large, brown faux-leather Lazy-Boy rocker/recliners, looking for all the world like chocolate marshmallow seating. These are the deluxe units that recline to an almost horizontal position with foot rests that extend an extra 4 inches for extra-tall patients. The other three recliners are blue utilitarian units that do not rock and barely recline at all. They are minimally padded and the arm rests are barely wider than my forearms. They look like Amtrak or Greyhound seats.
I received the anti-nausea meds first. No one had a smelly lunch with them at that point. I wasn't feeling any nausea before the drugs were administered. The two chemo drugs I received are called Adriamycin and Cytoxan, a fairly common duo and in fact, the same pair that Joan Lunden received during her chemo treatments. My nurses did not tell me that; I learned that when I watched some of Joan's videos on YouTube.
Cytoxan is clear. Adriamycin is a dark, reddish color with a slightly orange tinge to it. It is nicknamed Red Death. I understood why later that same day. (Fair warning number two. You will receive no other warning.)
The warnings and side effects of Red Death are pretty much the things you would read on a sheet of warnings about any standard exposure to radioactive elements in this world: If you get it on your skin, wash the area with soap and water every fifteen minutes and tell your caregiver. If you feel stinging or burning in your skin at the injection site, tell your doctor immediately. Apply ice to the skin for fifteen minutes, four times each day to relieve pain or swelling. Do this for three days. If you have blisters, sores, or a wormy discharge at the injection site, tell your doctor immediately. (Just kidding about the wormy discharge.)
I do not have a port so the Adriamycin is "pushed" directly into my IV by one of the chemo nurses. Two large syringes full of Red Death arrived at the Chemo Lounge, special delivery in a bag marked with skulls and crossbones just for me. Before Nurse A unpacked it, she put on her bullet-proof vest/lead shield, heavy rubber gloves up to her elbows, and a 270 degree full-face shield. (JK about the bullet-proof vest/lead shield, but she did put on a new gown just to administer this drug.)
Before she started, she reminded me that it was known as Red Death. "If you can feel any kind of burning in the area around the injection let me know right away. Basically, this is so nasty that if you happen to have weak vein walls, it can burn right through them and collapse the vein and then it will be going straight into the tissue, and trust me, you don't want that to happen."
How dare she imply that I didn't trust her? Our young, but very intimate nurse/patient acquaintanceship is 100% based on trust. I had no reason NOT to trust her. Good grief, I was letting her shoot me up.
Plus, right after trust, I am all for blatant truth and honesty, especially when it comes to medical procedures. Despite that, I guess I would have preferred a little less scary description there. Kind of like when your dentist says, "Okay, you're going to feel a pinch now," and they stab a needle into your jaw. That's not a pinch. I don't know anyone who can pinch like that.
I didn't have any burning sensations, and, while she was slowly depressing the plunger on the syringe, she was very carefully looking at her watch. I asked why this med had to be "pushed" the way she was doing it and she replied without looking up, "Because Red Death would eat right through any type of flexible plastic that the drip bags are made from. Within five minutes it would dissolve that lightweight plastic and burn a hole in the tile and sizzle straight through to the next floor." (JK again - she just said statistics show that pushing it has the best results.)
Nurse A was not bothered with any more of my questions. I did not want to break her concentration of looking at her watch and watching the milliliters being pushed. She was just as careful and cautious with the second syringe. I think we were both relieved when she was done, the syringes were in their own radioactive waste bag with skulls and crossbones, and all of her protective garb was thrown in a special bin.
Nurse B reminded me that I needed to drink vast amounts of water over the next two or three days so I could make sure that Red Death did not collect in my kidneys. Just like the veins in the injection site, the danger internally was that it could pool in your kidneys or bladder and eat right through your organ walls. "Keep drinking water," she said. "In this case, you cannot drink too much water. It does not dilute the drug's effectiveness at all - drink, drink, drink. You will probably see some red urine and red stools over the next few days. That is normal. If you see blood in the toilet, that is not normal - call us immediately if you start passing blood."
"How will I know if it is blood or if it is from the Adriamycin?"
"Oh, you'll know. If it is blood, that means the Adriamycin has eaten through something internally and when you urinate it will feel like you're peeing fire." Now THAT is some descriptive word work. Couldn't wait to share that on my blog.
The bag of Cytoxan was administered last. While this was being done Nurse A rolled over the plastic tower of bins filled with (mostly pink) chemo hats. I saw other patients paw through the different bins and try some on. I didn't think that I would see any hats I would like, let alone hats that would fit.
As an experienced shopper of clothes in sizes that most people don't wear, I know my size is typically found on either the shelves closest to the ground, closest to the ceiling, or on the clearance racks in back. So I went straight to the bottom bin in this rolling tower filled with hats that were lovingly homemade, hand-knitted, and hand-crocheted. Surprisingly, I found a few that were big enough for my head, and they were even made in some bright colors as well as some non-pink neutrals. One was hand-crocheted with a thick, white, pearl-y yarn that I swear was fitted to a basketball. This might be my stock, sensible Iowa winter cap.
The second selection was a machine-knitted skull cap, fairly thin, and made from a tan/khaki color, but it also had ultra-thin gold threads running through it. This one will work for the Golden Globe Awards because it perfectly accents my gold, sequined gown.
My third choice was crocheted out of a lovely, jewel-colored stretchy, chenille. With a palette of navy blue, hot pink, pale pink, rich burgundy, and a silvery sky blue, it was the perfect size for my head. It fits the depth of my cranium so well it almost engulfs my head like a 1930s swim cap. I feel like can dive into a swimming pool with my synchronized swimming teammate Ethel Merman, who would be wearing a matching jewel-colored swim cap, and immediately perform intricate maneuvers and poses underwater. (Author's note: I have a fear of water deeper than I am tall, so this hat must have magical powers. Ethel Merman died in 1984 of inoperable brain cancer. RIP, Ethel.) When I tried this hat on later in front of my sister, I told her I felt like an exotic bird in it, especially because of the variegated colors, but also because it has little flaps and fringes that will flutter in even the slightest breeze. She just laughed at me.
When the IV was wrapping up, the nurses told me that the doctor had called in a couple of prescriptions for anti-nausea meds. Nurse B said, "What we gave you here in your IV to fight the nausea will last 6-8 hours. It is 2pm right now, so you should be okay until 8 or 10 o'clock tonight. If it were me, I wouldn't take a pill tonight, I would wait until morning."
"I wouldn't," said Nurse A. "I would take a pill tonight just in case I needed it before it was the middle of the night." I told them I would be taking a pill. My history of nausea with all kinds of narcotic pain relievers is long and colorful - they always makes me sick to my stomach. Even if I get anti-nausea meds in my IV and have a patch behind my ear during surgery, I still get sick. After my last knee surgery I stopped taking the pain pills just a day or two after surgery. I learned I can manage the pain if I can feel it, but I can't manage the nausea and vomiting.
Nurse A explained that the two different meds (Compazine and Zofran) could be used simultaneously once every 8 hours, but staggered, so each med could overlap the other. "We never really know which anti-nausea meds will work best for which patient, so this is kind of a trial and error until you figure out which one will work the best for you." (Cue second set of alarm bells going off in the background.) I was just hoping that I would have time to pick-up my prescriptions and buy a few groceries before I got home.
I felt fine during the whole process. Again, this is what my brother kept saying about his chemo treatments. He felt fine. Other patients were done with their treatments earlier than me, so they were allowed to get up and go. New patients came in and filled the empty chairs. One woman did bring a Burger King lunch in with her. As I saw her come through the doorway with it I wondered if the smell would make anyone sick or not. It didn't. I would have been upset if it had made me feel ill, because when I am craving a fast-food fix, it is the BK grilled cheeseburgers that I desire.
They gave me a sheet with a long list of clarifying symptoms and side effects that would require immediate medical attention. Aside from a reaction that clearly included symptoms of radioactivity poisoning, the biggest concern was getting dehydrated from vomiting. They offered me some Christmas cookies with bright green and blue frosting that a patient had brought in (my first chemo was the day after Christmas). I thought that was a little odd, since chemo patients need to be concerned always about being exposed to germs. Schools won't even allow you to send homemade treats to school with your kids - they have to be individually wrapped, store-bought crap. I passed on the cookies.
As I was driving away, I was feeling pretty good about the whole process. Not even the tiniest hint of nausea was in my consciousness. I was absolutely convinced that I was going to fall into the small percentage of people who did not get nauseated or sick to their stomach. My brother did say he felt a little bit nauseated once or twice, but that he never got sick to his stomach. Maybe our family just has the tough gene when it comes to chemo.
As it turned out, I did fall into a fairly small percentage group. But it was the group of patients who became violently ill from the chemo drugs and end up in the hospital for dehydration.
I did stop and get the prescriptions along with a few other groceries that we needed. Came home, unloaded my truck, had a normal afternoon, fixed an early dinner for everyone (I was really hungry since I didn't eat lunch), and ate dinner like I usually do.
I do remember thinking that maybe I shouldn't eat a full-sized meal, just in case I got sick later, but I remember what the oncologist said, "If it smells good and tastes good, you better eat while you have the chance. The very next day that same food and drink may not smell or taste good at all." So I ate. A lot. Hey, it was Christmas leftovers with Christmas goodies for dessert.
(OK - I lied about not giving you more than two warnings. This is your third and last chance for the Chicken Exit if you don't want to know these details!)
About 6:30pm I started feeling a little queasy, so I took a Compazine and washed it down with water - which now tasted funny. By 7pm I was laying down in my bed and by 7:30 I was vomiting. For two solid hours, I was vomiting. Not just feeling a little nauseated and vomiting, I was retching. Frequently. I knew I couldn't take the other pill until 10:30 to keep them on a staggered scheduled, but more importantly, I knew if I took a pill of any kind it was going to come right back up, so I didn't.
I was desperately trying to get some water inside of me. Every time I rinsed my mouth out I followed it with a small sip. Once the vomiting was simultaneous with the diarrhea, I knew I would be in trouble fast.
My husband has EMT training, and he's an Army Ranger, so he has a fair amount of medical background for a guy who really carves leather for a living. He was right by me for all of it, changing the buckets, cleaning up the messes, handing me a water bottle and cool washrag. My boys were watching some of the new DVDs they got for Christmas from their sister. I am sure they probably turned the volume up to drown out he noises emanating from the bathroom, even though they were at the other end of our apartment.
Two hours on the toilet holding a bucket in my lap. Every time my body heaved and every muscle in my torso was flexed I was puking, peeing, and pooping (and yes, all three were actually a reddish orange from Red Death, but no blood). My eyes were watering and my nose was dripping. With the exception of my ears, I successfully had fluids being ejected out of every body orifice I had.
I think it was about 9 or 9:30 when I told my husband we were going to have to go to the ER, if for no other reason to get an IV to get some fluids back in me so I could have more ammunition to keep puking my guts out overnight. We told the boys not to worry, that we would be back later.
I brought my cancer folder with me that had the sheets for the chemo meds as well as the prescriptions that I had for the nausea. Once I was on a gurney in the cold ER room under fluorescent lights, I think I really let loose. I didn't have to worry about my boys hearing me, and I was in a hospital, so I was moaning and groaning and my chills and shaking was rattling the hospital bed on wheels. Good thing the wheels were locked or in my deluded state I would have shimmied and synchronized swam right on down the hallway looking for Ethel.
They stuck a needle in my left hand to get ready for the IV if needed, but initially just gave me 10mg of Zofran, which was the second med I had a prescription for but had not yet taken. That did nothing to even slow it down. I don't know how much time passed before they gave me a 50 mg Zofran shot in my butt. After I had this shot, I started to get some relief. At least enough that it was slowing down the retching to only once every 15 minutes. And once I had enough blankets on me and was warm enough to stop the whole-body-shuddering, I could actually rest between episodes. Kind of like contractions during childbirth. They did go ahead and give me an IV bag of saline, just to pump up my fluid levels.
The nurse that was on duty kept saying to my husband, "We're not going to be able to completely stop the vomiting. No matter what, there is nothing we can do to completely stop it. It's a side effect of chemo. It's expected. They did tell you that, right?" Aside from the condescension in her tone, I appreciated her saying that. We knew that coming in, but we were both smart enough to know that dehydration was right around the corner.
The ER doctor wrote me another prescription for Zofran, but a sublingual one, so it dissolves under the tongue and you don't have to try and keep a pill down. They told us the shot should last us until morning, at which time we could fill the scrip. We tried to time our exit from the ER between puke runs, so I was put in a wheelchair and pushed to our truck. I got in the front seat, and as soon as Will started driving I was puking in a bucket again. It maintained a consistent window of about every 15 minutes for a little while. Once we were home, I have no idea what the timing was between the puke runs, but I do know that I was getting a little bit of sleep between them. We got back home a little past midnight, so I am going to guess that I still puked every hour that first night.
The next day was Saturday. My husband filled the new Zofran scrip, but it smelled awful so I couldn't even imagine putting it in my mouth. I tried one anyway, but my mouth was really too dry and sticky (indicating dehydration again) for it to dissolve, so I chewed it up and tried to swallow with a sip from a water bottle - which promptly just started another round of retching. Meds tasted bad. Water tasted worse. I really did not want to go back to the ER so I buckled down and with my husband's help, we forced more water down. I tried to take 2 or 3 sips every time, and my husband would make me take "just one more". It almost always made me vomit again, but I could tell I was keeping enough water down that my mouth was not sticky anymore. He tells me there were a few times that I was so out of it that I didn't even respond when he was trying to get me to drink. I remember at least two times that I agreed to take a sip, but fooled him because the room was dark and I just let it slide right back into the bottle.
For the rest of Saturday I was able to start rotating the Compazine and Zofran pills, and tried to time them so they would be ingested right after I puked, giving them some effective time. At one point I wanted to try some crackers and my husband reminded me that the ER doc had said "nothing but clear fluids for a day". I ignored him and tried some crackers and started puking. Saturday overnight it had subsided to puking once every two or three hours.
Sunday I was feeling much better. Well enough that I wanted to try some crackers again, this time in the hopes they would make me thirsty enough to want to drink more water. Water still was about the worst tasting thing I had ever put in my mouth, so my husband went and bought some apple juice, white grape juice, and Sprite - you know, clear fluids. Every one of those tasted so sweet it was actually worse than the water.
The crackers stayed down Sunday, although I still needed to drink much more water. Now I was a tiny bit concerned because I did see a little blood in my urine. I did not feel like I was "peeing fire", but I called the doctor anyway. I was terrified that with so little fluids coming in that the Red Death had settled in my kidneys and was burning a hole right through it. It turned out it was my period. I have had about three periods in the last two years, and I have to start on the weekend of my first chemo treatment?! Even better, I was out of the necessary feminine hygiene products! Lucky for me, one of my friends called to let me know that she was driving to see me and was only about 15 minutes away. I texted her and asked her to pick up some tampons and pads. Bless her heart, she also brought a carload of groceries including three kinds of deli chicken, a ready-to-bake pizza, ice cream, milk - and lots of other goodies. We were barely able to get all of the things packed into our fridge.
It was good to see her and chat for a bit. She didn't stay long. I was exhausted and was still feeling queasy most of the time, so as soon as I said, "Okay, I have to lay down now," she was up and out. We cooked that XL pepperoni pizza for a late afternoon snack (because it wouldn't fit in the fridge with everything else), and it smelled delicious. I was very happy to eat some very small bites (literally 1 inch square bites) and even though they tasted a little bit weird on my chemo tongue, I was ecstatic that I could keep it down.
With the accomplishment of taking in small amounts of solid food and keeping it down, Monday and Tuesday showed even more improvement. My husband figured out that the Zofran was working much better than the Compazine. We started taking them in a staggered way that was more beneficial for me, resulting in no vomiting, plus, we were both able to get more sleep, during the day and at night. Wednesday and Thursday were nearly nausea-free, and by Friday, one week from chemo, I almost felt normal.
You're in my chair
There are two kinds of recliners for patients to sit in during their visit to what I call The Chemo Lounge. I think the medical professionals call it the "chemo room". No matter what it is called, there are seven comfy chairs in this large room, with all of them oriented to point towards the giant TV bolted to the wall. The first time I was there, the TV was blaring with THE PRICE IS RIGHT CONTESTANTS SCREAMING TO BE HEARD ABOVE THE AUDIENCE THE PRICES THEY WERE CHOOSING. I didn't ask to change the channel or even to turn the volume down. Not sure I ever will. I just want to get my chemo done and get OUT of there.
Of the seven chairs, four of them are brown, overstuffed fake leather Lazy Boy rocker/recliners. The kind with the big, puffy armrests and cavernous padding in the wide seat and back. These are big enough for a person and a half, or two slender people. When these recline, you can extend the foot rest a few more inches - a glorious luxury for anyone over six feet tall. The backs are tall enough so that if you just recline the back, you will feel like you are resting on a cloud at a 45 degree angle and your neck and head are perfectly supported. These four chocolate marshmallow chairs are the perfectly aimed front row, pointed at the TV for maximum comfort during your chemo treatment. If you would like to, you can do what one patient did during my first treatment - she reclined all the way with foot rest extended fully so she essentially had a twin sized bed. In which she promptly fell asleep as soon as her IV was hooked up and snored almost louder than Drew Carey giving words of encouragement to the NEXT CONTESTANT ON THE PRICE IS RIGHT.
The other three chairs in the second row of seating consists of blue, narrow seats that look like they came out of an Amtrak train. They are complete with narrow arm rests(with slight padding), a foot thingy that does not extend far enough to support the bottom half of my calves let alone ankles and feet, and the back of the chair is not tall enough. When I go to lean my head back, I realize that the top of the chair hits me in the middle of my neck. That would be really awesome for my dentist, bending my neck at a backwards 90 degrees so my mouth pulls itself open while I look straight up at the ceiling. I could slouch down so my head leans against the hard, skimpy padding, but then my butt is nearly on the edge of the recliner and if I put the foot rest out now, it will end at the backs of my knees. I am pretty sure if I extend the foot rest at this point that physics and gravity will rule the day and the entire assemblage of myself, chair, and chemo IV will all tip forward, possibly crashing noisily and interrupting the sleeping pleasure of one, and the viewing pleasure of the rest of the chemo patients who are now enraptured with ANOTHER CONTESTANT COMING ON DOWN TO CONTESTANTS ROW!
There were only two blue chairs open, all the premium brown chairs were filled, the last one just being taken by a small Oriental woman who came in moments before me.
I looked at her, and then back at the blue chairs. Then back at her again, hoping to catch her attention. I wasn't going to say, "Excuse me, but I think you just took my chair. You should be in the little blue chair, I should be in the Pappa Bear Lazy Boy." I wanted her to look up and see the realization come over her face. I wanted her to give me that seat, like a boy scout would give up his seat to an elderly person on the bus. Not because I was older than her (because I was), but because I was so much larger than her in all dimensions.
She didn't look at me. I think the nurses saw the looks I was giving this little woman and they realized what I wanted, but in reality, I was no more entitled to the big chairs than anyone else in that room. First come, first served. It was not the nurses' job to assign chairs according to size. They were not sociological mediators, they were just there to put radioactive chemicals in our IVs.
So I sat in one of the blue chairs, and very shortly after that, the last blue chair was taken by a very elderly woman who came in on a wheelchair. Full house at the Chemo Lounge. We had two waitresses, I mean nurses, serving seven patients. They didn't ask me what kind of chemo cocktail I wanted, that was already predetermined by the oncologist. I did notice that the when the second chemo drug was administered, it was a particularly nasty one, because the nurse who pushed it into my IV first made sure that she had on her bullet-proof vest, heavy duty rubber gloves that went all the way to her elbows, and her 270 degree full-face shield before she even opened the special delivery package sent just for me.
This special treatment did get the attention of every patient in the room, with the exception of our fellow patient whose snoring in her recliner/twin bed was now drowning out Victor on The Young and The Restless. Small Woman in Large Brown Lazy Boy (her Native American name, christened by me) even looked up and made eye contact with me. I tried to shoot daggers from my eyes at her. I tried mental telepathy. I tried to get her to show me some pity, but nothing worked. We could have waltzed our respective IV stands around the room and still traded chairs, even after chemo for both of us had started. She just didn't see it. And I wasn't going to ask for it.
I decided I could continue to focus a bunch of negative energy and resentment in her direction, but I knew it wasn't her problem. It was me. I'm not even going to write about how cute she looked in her selection of little chemo hats available for free when you visit The Chemo Lounge. I was simply annoyed that I was pretty sure she could have fit her whole family in that Pappa Bear chair with her, while I dangled limbs and body parts out of all of the perimeters of the smaller blue chair I was in. She was born small, I was born XL. Let it go.
We were both there for chemo, a great equalizer, much the same as cancer is. I had no business being annoyed with her. It doesn't matter how young, or tall, or pretty, or healthy, or rich you are. Breast cancer can hit us all. And please remember that it will hit 1 in 8 of us.
Then I wondered if all of the patients in The Chemo Lounge were on a three-week rotation. Will I see that same group of women at my next chemo appointment? I bet I will see at least some of them. I also bet if I talk to the nurses that they could probably figure out a way to save me a Pappa Bear chair. I know if I weighed three hundred pounds that I could not fit in a blue chair - they would have to save a brown chair for me. If they can't save me a brown chair, I might have to walk over to Small Woman in Large Brown Lazy Boy and do a Terminator number on her and just say, "GET. OUT."
Of the seven chairs, four of them are brown, overstuffed fake leather Lazy Boy rocker/recliners. The kind with the big, puffy armrests and cavernous padding in the wide seat and back. These are big enough for a person and a half, or two slender people. When these recline, you can extend the foot rest a few more inches - a glorious luxury for anyone over six feet tall. The backs are tall enough so that if you just recline the back, you will feel like you are resting on a cloud at a 45 degree angle and your neck and head are perfectly supported. These four chocolate marshmallow chairs are the perfectly aimed front row, pointed at the TV for maximum comfort during your chemo treatment. If you would like to, you can do what one patient did during my first treatment - she reclined all the way with foot rest extended fully so she essentially had a twin sized bed. In which she promptly fell asleep as soon as her IV was hooked up and snored almost louder than Drew Carey giving words of encouragement to the NEXT CONTESTANT ON THE PRICE IS RIGHT.
The other three chairs in the second row of seating consists of blue, narrow seats that look like they came out of an Amtrak train. They are complete with narrow arm rests(with slight padding), a foot thingy that does not extend far enough to support the bottom half of my calves let alone ankles and feet, and the back of the chair is not tall enough. When I go to lean my head back, I realize that the top of the chair hits me in the middle of my neck. That would be really awesome for my dentist, bending my neck at a backwards 90 degrees so my mouth pulls itself open while I look straight up at the ceiling. I could slouch down so my head leans against the hard, skimpy padding, but then my butt is nearly on the edge of the recliner and if I put the foot rest out now, it will end at the backs of my knees. I am pretty sure if I extend the foot rest at this point that physics and gravity will rule the day and the entire assemblage of myself, chair, and chemo IV will all tip forward, possibly crashing noisily and interrupting the sleeping pleasure of one, and the viewing pleasure of the rest of the chemo patients who are now enraptured with ANOTHER CONTESTANT COMING ON DOWN TO CONTESTANTS ROW!
There were only two blue chairs open, all the premium brown chairs were filled, the last one just being taken by a small Oriental woman who came in moments before me.
I looked at her, and then back at the blue chairs. Then back at her again, hoping to catch her attention. I wasn't going to say, "Excuse me, but I think you just took my chair. You should be in the little blue chair, I should be in the Pappa Bear Lazy Boy." I wanted her to look up and see the realization come over her face. I wanted her to give me that seat, like a boy scout would give up his seat to an elderly person on the bus. Not because I was older than her (because I was), but because I was so much larger than her in all dimensions.
She didn't look at me. I think the nurses saw the looks I was giving this little woman and they realized what I wanted, but in reality, I was no more entitled to the big chairs than anyone else in that room. First come, first served. It was not the nurses' job to assign chairs according to size. They were not sociological mediators, they were just there to put radioactive chemicals in our IVs.
So I sat in one of the blue chairs, and very shortly after that, the last blue chair was taken by a very elderly woman who came in on a wheelchair. Full house at the Chemo Lounge. We had two waitresses, I mean nurses, serving seven patients. They didn't ask me what kind of chemo cocktail I wanted, that was already predetermined by the oncologist. I did notice that the when the second chemo drug was administered, it was a particularly nasty one, because the nurse who pushed it into my IV first made sure that she had on her bullet-proof vest, heavy duty rubber gloves that went all the way to her elbows, and her 270 degree full-face shield before she even opened the special delivery package sent just for me.
This special treatment did get the attention of every patient in the room, with the exception of our fellow patient whose snoring in her recliner/twin bed was now drowning out Victor on The Young and The Restless. Small Woman in Large Brown Lazy Boy (her Native American name, christened by me) even looked up and made eye contact with me. I tried to shoot daggers from my eyes at her. I tried mental telepathy. I tried to get her to show me some pity, but nothing worked. We could have waltzed our respective IV stands around the room and still traded chairs, even after chemo for both of us had started. She just didn't see it. And I wasn't going to ask for it.
I decided I could continue to focus a bunch of negative energy and resentment in her direction, but I knew it wasn't her problem. It was me. I'm not even going to write about how cute she looked in her selection of little chemo hats available for free when you visit The Chemo Lounge. I was simply annoyed that I was pretty sure she could have fit her whole family in that Pappa Bear chair with her, while I dangled limbs and body parts out of all of the perimeters of the smaller blue chair I was in. She was born small, I was born XL. Let it go.
We were both there for chemo, a great equalizer, much the same as cancer is. I had no business being annoyed with her. It doesn't matter how young, or tall, or pretty, or healthy, or rich you are. Breast cancer can hit us all. And please remember that it will hit 1 in 8 of us.
Then I wondered if all of the patients in The Chemo Lounge were on a three-week rotation. Will I see that same group of women at my next chemo appointment? I bet I will see at least some of them. I also bet if I talk to the nurses that they could probably figure out a way to save me a Pappa Bear chair. I know if I weighed three hundred pounds that I could not fit in a blue chair - they would have to save a brown chair for me. If they can't save me a brown chair, I might have to walk over to Small Woman in Large Brown Lazy Boy and do a Terminator number on her and just say, "GET. OUT."
Sunday, January 11, 2015
Hats vs. Wigs
I have never really enjoyed wearing hats. I have an XL head, so hats never fit quite right - they are never big enough or deep enough or conforming enough or something. Not sure what it is, but hats just feel like things on the top of my head. My sister recently confirmed that they don't look good on me either. When she came to visit, I showed her some of the hats I had already selected. Maybe the problem lies in my selection, because she laughed out loud at some without even seeing them on my head. I put a couple on, and she laughed some more. "Maybe if you turn the brim up? Or down?" Didn't matter. They still just felt weird.
After I was diagnosed with BC and knew chances were good that I would lose my hair to chemo, I went online to look at some headcoverings. Most were pretty inexpensive, but I knew the websites could not fool me. The mannequins and live models that the hats were shown on were petite noggins, not a giant-sized German woman's skull. They were also modeled by cute little feminine faces with button noses and tiny ears. I have neither.
I stopped by some of my favorite thrift stores and just grabbed a variety of hats just so I wouldn't be without. It is deathly cold in Iowa right now, and I have to have something. I also grabbed some scarves, which I love wearing. Around my NECK, not on my HEAD. I might wear some like a do-rag when the weather is warmer, but typically I will wear two or even three scarves at a time.
Recently a friend shipped me a gift package of hats and scarves, and they look really great ... in the box. I haven't been courageous enough to try them on yet. The hats look like they will fit, because they have elastic at the backs of the bands, and I know the scarves will, I'm just too chicken to find out for sure. If not, I am pretty sure I can exchange for larger sizes on the hats.
Many of you blog readers who were already friends with me on Facebook will already know that I allowed my husband to use his clippers to give me a buzzcut in anticipation of complete hair loss. Even though my hair was pretty short, I just didn't want to deal with clumps of hair coming out in handfuls. My doc said it would fall out 8-14 days after chemo, but it could take up to three weeks. In just five days that three weeks will be up, and I still have my hair.
My scalp has been very tender, and with the buzzcut, anytime something touches my scalp it feels like a thousand needles on my skin with each individual shaft of hair poking me. Once I get a hat on, as long as it is one that doesn't shift around, I can deal with it. At night when going to bed, I have to make sure that I lay my head on the pillow in the direction my hair is growing, and then hope I fall asleep before I have to move my head.
I know many people choose wigs, but I just can't take wigs seriously. Not that I am making fun of women who prefer the wig route, it's just not for me. I did buy a wig once - a black curly mop from The Theatrical Shop to complete my Rocky Horror Picture Show costume thirty years ago. I think I still have that packed away somewhere with a pair of platform shoes.
The only wig style that remotely interests me would be an early Cher wig, with long glossy black hair, center part, and a headband attached to hold it in place. Having grown up with curly, light brown hair, I think I could rock a Cher wig. My second choice would be a platinum Phyllis Diller-esque fright wig, looking like she just stuck her finger in a light socket. I could acquire both of these wig styles and wear them comfortably in public.
Maybe not.
After I was diagnosed with BC and knew chances were good that I would lose my hair to chemo, I went online to look at some headcoverings. Most were pretty inexpensive, but I knew the websites could not fool me. The mannequins and live models that the hats were shown on were petite noggins, not a giant-sized German woman's skull. They were also modeled by cute little feminine faces with button noses and tiny ears. I have neither.
I stopped by some of my favorite thrift stores and just grabbed a variety of hats just so I wouldn't be without. It is deathly cold in Iowa right now, and I have to have something. I also grabbed some scarves, which I love wearing. Around my NECK, not on my HEAD. I might wear some like a do-rag when the weather is warmer, but typically I will wear two or even three scarves at a time.
Recently a friend shipped me a gift package of hats and scarves, and they look really great ... in the box. I haven't been courageous enough to try them on yet. The hats look like they will fit, because they have elastic at the backs of the bands, and I know the scarves will, I'm just too chicken to find out for sure. If not, I am pretty sure I can exchange for larger sizes on the hats.
Many of you blog readers who were already friends with me on Facebook will already know that I allowed my husband to use his clippers to give me a buzzcut in anticipation of complete hair loss. Even though my hair was pretty short, I just didn't want to deal with clumps of hair coming out in handfuls. My doc said it would fall out 8-14 days after chemo, but it could take up to three weeks. In just five days that three weeks will be up, and I still have my hair.
My scalp has been very tender, and with the buzzcut, anytime something touches my scalp it feels like a thousand needles on my skin with each individual shaft of hair poking me. Once I get a hat on, as long as it is one that doesn't shift around, I can deal with it. At night when going to bed, I have to make sure that I lay my head on the pillow in the direction my hair is growing, and then hope I fall asleep before I have to move my head.
I know many people choose wigs, but I just can't take wigs seriously. Not that I am making fun of women who prefer the wig route, it's just not for me. I did buy a wig once - a black curly mop from The Theatrical Shop to complete my Rocky Horror Picture Show costume thirty years ago. I think I still have that packed away somewhere with a pair of platform shoes.
The only wig style that remotely interests me would be an early Cher wig, with long glossy black hair, center part, and a headband attached to hold it in place. Having grown up with curly, light brown hair, I think I could rock a Cher wig. My second choice would be a platinum Phyllis Diller-esque fright wig, looking like she just stuck her finger in a light socket. I could acquire both of these wig styles and wear them comfortably in public.
Maybe not.
Saturday, January 10, 2015
Man, Woman, or Sasquatch
Side effects from chemo are keeping me prisoner. Aside from going to the post office a few times, the courthouse twice, and the library only once, I have been staying in our 2nd floor apartment - avoiding the arctic temperatures, as well as all of the cold germs, bacteria, and viruses that float around at this time of year.
The oncologist says to avoid places with twenty or more people, and especially enclosed or cramped spaces that might make me feel crowded or have me overwhelmed with the general smell of humanity. But my youngest son had a middle school home basketball game that I desperately wanted to go and watch. There are usually four games - 8A, 8B, 7A, and 7B. My son usually plays on 7B, so they are the last boys to be on the court. I asked a friend of mine to send me a text when the 8th grade games were over so I could try and time my arrival just as the 8th grade parents were leaving - vacating the primo spots on the curb right by the front doors of the school. I figured if I got a spot that close, I would still stay in my vehicle for awhile, just watching the flow of foot traffic exiting the building, trying to gauge when three out of the four games were done.
I walked in at about half-time of the 7A game. I was worried that the smells from the popcorn machine, or the crock pots with hot dogs in them, or any of the other wide variety of smells to be found at a middle school basketball game would turn my stomach in a heartbeat. I paid my admission and made it to the doorway going into the gym. I decided rather than take a seat, I was going to hang out in the doorway - just like all of the little,old men do. What's up with that? Are the bleachers just too hard for their bony butts? I didn't care - I wanted to be near the door just in case I needed to exit in a hurry to find a sink, a toilet, a bucket, or a trash can fast.
Not having the problem of a bony butt yet, I still have plenty of padding.When the 7A game was over and the parents sitting in the front row took off, I had processed enough smells to feel pretty safe in deciding to sit down, but still be close to the door.
Smells came and went right under my nose, and I stayed seated for the whole 7B game. No nausea or queasiness, which I will take as a small victory. The game soon ended and I was one of the first out of the gym, but I stopped while still in the foyer of the school to put on my gloves, hat, and scarf. I heard the voices of some of the 8th graders from the visiting team giggling and snickering. Then, I saw a commotion out of the corner of my eye and as I turned my head ever so slightly towards them, I kept my eyes on my hands and tried to appear focused on putting my gloves on first. In my peripheral vision I could clearly see five or six of them as they moved in a congealed pack looking like a deformed spider of some sort with way too many legs.
The boy in the front of the pack had a white shirt on. His arms contrasted nicely against the dark shirts and coats of his friends and he held them straight out to his sides at shoulder height, as if he were holding back a snarling, maniacal pack of creatures. Holding them back for their own safety, as if protecting them from ... me.
"Oh, you guys!" he said too loudly. "Look at it but don't get too close to it! Is it a man? A woman? Sasquatch?" Uncontrolled laughter rolled through the bunch of adolescents.
I never made eye contact with any of them, but there was nobody else near the door at the time. They were unmistakeably talking about me. I just kept calmly putting my gloves on, then my little knit hat. Then my giant purple and black woven scarf that I really think is a table runner. They kept giggling and whispering.
White Shirt Boy was clearly the leader and instigator. He was the closest one to me. I considered my options:
A) I could calmly turn towards the group, greet them with a serene smile, take a hesitant step towards them, and gently, in a non-threatening manner, explain that my buzzcut is a direct result from having cancer and going through chemo. Spell out the facts to their raptly listening faces that it is really unkind to make fun of someone's appearance without any empathy to what might be going on in their life. White Shirt Boy will be moved to tears because his grandmother and aunt have both had breast cancer. He will apologize profusely, and make his little pack of spidery mammals all apologize for giggling at me and making fun of me. They will swear never to do it again and then they will ask me where their parents can make a substantial financial contribution to help me financially during this very difficult time. We will exchange addresses and phone numbers, but no hugs - I kind of germaphobic right now.
B) In two lightening quick strides I could grab the front of White Shirt Boy's shirt with my left hand, preventing him from retreating, and then slam the heel of my right hand cleanly and sharply up and into his nose, shattering it and hopefully pushing bone shards up into his brain. Then while his head was tipped up and back with his eyes glazing over looking into the fluorescent lights on the ceiling, I would put my right hand on his chest and then using both hands, I would pull him forward, slamming my extra-large cranium right into his mouth, definitely bloodying his word hole and hopefully knocking out some lower teeth. He would never know what hit him.
C) I can exit immediately, before I have all my cold-weather gear on.People are starting to exit the gym in masses now, and that will only give them an audience. My truck is parked on the curb, after all, and I will have to let it run for awhile anyway before it really warms up. I will pretend that their scathing comments and immature behavior did not cut me to the bone. "Forgive them for they know not what they do." I will not spend the rest of the evening on the brink of tears because my first, fairly successful foray into the world with a chemo haircut was chewed up and spit out by adolescent boys. I will act like I never heard any of it. I will remind myself that the same thing happened numerous times throughout my life and although I was horribly embarrassed every time that it did, I survived it every time.
I am tall. I am strong. I do not wear much makeup other than mascara and a little bit of eyeliner. If I am wearing muddy boots, blue jeans, and a flannel shirt - many people will mistake me for a man or a lesbian. That is not my problem.
I opted for C, but in hindsight, I should have chosen some kind of combination of A and C. I should have found their coach and told them of the incident. I could still call and talk to someone in the administration of that school, but it is not the school's fault that those boys weren't raised correctly by their parents.
I know there are plenty of my friends who would say that B was the only correct choice. I think it's bad enough that I have to explain my preemptive chemo buzzcut to everyone. Not sure that I would want to explain the bite mark impressions across my forehead as well. Might leave a permanent scar and when my hair grows back I would have to have bangs to hide it. I hate bangs.
The oncologist says to avoid places with twenty or more people, and especially enclosed or cramped spaces that might make me feel crowded or have me overwhelmed with the general smell of humanity. But my youngest son had a middle school home basketball game that I desperately wanted to go and watch. There are usually four games - 8A, 8B, 7A, and 7B. My son usually plays on 7B, so they are the last boys to be on the court. I asked a friend of mine to send me a text when the 8th grade games were over so I could try and time my arrival just as the 8th grade parents were leaving - vacating the primo spots on the curb right by the front doors of the school. I figured if I got a spot that close, I would still stay in my vehicle for awhile, just watching the flow of foot traffic exiting the building, trying to gauge when three out of the four games were done.
I walked in at about half-time of the 7A game. I was worried that the smells from the popcorn machine, or the crock pots with hot dogs in them, or any of the other wide variety of smells to be found at a middle school basketball game would turn my stomach in a heartbeat. I paid my admission and made it to the doorway going into the gym. I decided rather than take a seat, I was going to hang out in the doorway - just like all of the little,old men do. What's up with that? Are the bleachers just too hard for their bony butts? I didn't care - I wanted to be near the door just in case I needed to exit in a hurry to find a sink, a toilet, a bucket, or a trash can fast.
Not having the problem of a bony butt yet, I still have plenty of padding.When the 7A game was over and the parents sitting in the front row took off, I had processed enough smells to feel pretty safe in deciding to sit down, but still be close to the door.
Smells came and went right under my nose, and I stayed seated for the whole 7B game. No nausea or queasiness, which I will take as a small victory. The game soon ended and I was one of the first out of the gym, but I stopped while still in the foyer of the school to put on my gloves, hat, and scarf. I heard the voices of some of the 8th graders from the visiting team giggling and snickering. Then, I saw a commotion out of the corner of my eye and as I turned my head ever so slightly towards them, I kept my eyes on my hands and tried to appear focused on putting my gloves on first. In my peripheral vision I could clearly see five or six of them as they moved in a congealed pack looking like a deformed spider of some sort with way too many legs.
The boy in the front of the pack had a white shirt on. His arms contrasted nicely against the dark shirts and coats of his friends and he held them straight out to his sides at shoulder height, as if he were holding back a snarling, maniacal pack of creatures. Holding them back for their own safety, as if protecting them from ... me.
"Oh, you guys!" he said too loudly. "Look at it but don't get too close to it! Is it a man? A woman? Sasquatch?" Uncontrolled laughter rolled through the bunch of adolescents.
I never made eye contact with any of them, but there was nobody else near the door at the time. They were unmistakeably talking about me. I just kept calmly putting my gloves on, then my little knit hat. Then my giant purple and black woven scarf that I really think is a table runner. They kept giggling and whispering.
White Shirt Boy was clearly the leader and instigator. He was the closest one to me. I considered my options:
A) I could calmly turn towards the group, greet them with a serene smile, take a hesitant step towards them, and gently, in a non-threatening manner, explain that my buzzcut is a direct result from having cancer and going through chemo. Spell out the facts to their raptly listening faces that it is really unkind to make fun of someone's appearance without any empathy to what might be going on in their life. White Shirt Boy will be moved to tears because his grandmother and aunt have both had breast cancer. He will apologize profusely, and make his little pack of spidery mammals all apologize for giggling at me and making fun of me. They will swear never to do it again and then they will ask me where their parents can make a substantial financial contribution to help me financially during this very difficult time. We will exchange addresses and phone numbers, but no hugs - I kind of germaphobic right now.
B) In two lightening quick strides I could grab the front of White Shirt Boy's shirt with my left hand, preventing him from retreating, and then slam the heel of my right hand cleanly and sharply up and into his nose, shattering it and hopefully pushing bone shards up into his brain. Then while his head was tipped up and back with his eyes glazing over looking into the fluorescent lights on the ceiling, I would put my right hand on his chest and then using both hands, I would pull him forward, slamming my extra-large cranium right into his mouth, definitely bloodying his word hole and hopefully knocking out some lower teeth. He would never know what hit him.
C) I can exit immediately, before I have all my cold-weather gear on.People are starting to exit the gym in masses now, and that will only give them an audience. My truck is parked on the curb, after all, and I will have to let it run for awhile anyway before it really warms up. I will pretend that their scathing comments and immature behavior did not cut me to the bone. "Forgive them for they know not what they do." I will not spend the rest of the evening on the brink of tears because my first, fairly successful foray into the world with a chemo haircut was chewed up and spit out by adolescent boys. I will act like I never heard any of it. I will remind myself that the same thing happened numerous times throughout my life and although I was horribly embarrassed every time that it did, I survived it every time.
I am tall. I am strong. I do not wear much makeup other than mascara and a little bit of eyeliner. If I am wearing muddy boots, blue jeans, and a flannel shirt - many people will mistake me for a man or a lesbian. That is not my problem.
I opted for C, but in hindsight, I should have chosen some kind of combination of A and C. I should have found their coach and told them of the incident. I could still call and talk to someone in the administration of that school, but it is not the school's fault that those boys weren't raised correctly by their parents.
I know there are plenty of my friends who would say that B was the only correct choice. I think it's bad enough that I have to explain my preemptive chemo buzzcut to everyone. Not sure that I would want to explain the bite mark impressions across my forehead as well. Might leave a permanent scar and when my hair grows back I would have to have bangs to hide it. I hate bangs.
Friday, January 9, 2015
That's not Positive!
When I took one look at my middle-aged brother on Christmas Eve in
2013, I thought, “He looks like a cadaver. He looks like the walking dead. What
is wrong? What is he going to tell us today?”
He never made an announcement that day. I asked him how he
felt and he said, “Fine – and you?” Benign answer. I didn’t think I should ruin
Christmas by telling him he looked like hell. Maybe he’s just getting older –
we all look a little worse for wear eventually.
By Valentine’s Day he had been diagnosed with Acute Myeloid
Leukemia, and his cancer journey began.
My youngest sister reacted to the stress of the
situation like I did - by not eating. I think both of us dropped fifteen or twenty
pounds apiece. We could afford to, so it was no big deal. There were days that
I really felt like I could not eat a thing. How could I take sustenance when my
brother was dying? I just couldn’t. I got sick to my stomach the day my sister
told me the news, but the rest of the weight loss was mostly just lack of
appetite.
Another reason for my weight loss was the fact that in the
back of my head, I just knew all along I would be a marrow match for him out
of his four sisters, simply because we were physically more similar than he was
to my other sisters. Therefore, our DNA was closer; therefore, I would be more
likely to be a match, right? I know that’s a stretch, but however faulty the
reasoning was, I knew I needed to lose weight, get healthier, and be prepared
for a bone marrow transplant. As it turned out, I am the one sister out of four
that is a match. I will gladly do it if and when he needs it.
In my ongoing weight loss, I did notice there was an area
with more dense tissue on my left breast. I have had mastitis in the past, and
still have what I would call scar tissue from it, but it is just really solid areas of
tissue. All of my mammograms have always been normal. These dense areas were
watched over the years, which was a little easier to do with the new 3D mammograms, but since I
have no history of breast cancer in my family, and I was completely
asymptomatic, I passed every test.
What was different and disturbing this time was when I noticed
that my left nipple seemed to want to point off to the left, kind of like Marty
Feldman’s eye. I knew that was a very definite sign of an abnormal growth, but
I thought in my prayers, “ Please, God, I
really need to help get my brother through his cancer battle. He is not
married, does not have kids, and I know you know this, but all of the sisters
are helping out and we are all just really maxed out. There is no way my family can take on the burden of another cancer diagnosis at this time. So, God, if you could just let us get through his fundraising
auction, and get him through all of his chemo, I’ll take the time for myself
and get another mammogram.”
In the late summer I had to take an emergency trip to Osage Beach in Lake of the Ozarks with one girlfriend to meet four more girlfriends for a super-size GNO - the extended, week-long version. “Please, God, just let me take one more trip with my girlfriends
before my life is ruined with a mammogram. We both know that they need a
designated driver everywhere they go, and I am that driver”.
Then it was fall and school
was starting up for my two youngest sons. “Please,
God, just let me get my boys settled in middle school – it is only their second year
in public school and middle school is still the stratified pit of voracious vipers that it was when I was in junior high. School is tough. Going through adolescence is worse. They need me more than they are willing to admit to help them through this transition.”
I had just been hired on part-time at the public library a
few steps from my apartment and I didn’t want to get cut from the ranks before
my probationary period was over. “Please,
God, I LOVE working at the library. I think I’ve found my tribe. They really
need me there and with only handful of part-time employees, I really can’t
start taking time off for medical reasons. Just let me get settled into a
routine and maybe get some regular days scheduled and then I’ll schedule the
mammogram.”
I hadn’t had a mammogram since 2010 but finally in early
November, 2014, I made it happen. When I learned it was abnormal, I went back
in for an ultra sound and a needle biopsy. The radiologist called to tell me
that my biopsy was positive. “Oh thank goodness. What a relief. I shouldn’t
have kept postponing this” were the words that came tumbling out of my mouth in a flood of emotions. “No…uhhhh… I’m very sorry
Mrs. Ghormley, that means the pathology of the growth shows that it is positive
for cancer cells. You do have breast cancer.” Oh. Crap. It had completely escaped my
consciousness that “positive” in medical vernacular did not mean it was a good
thing.
The thing that I want everyone who is reading this blog to realize is this: You can't bargain with God. We all make prayers like that and we have since we were little kids. No one has time for cancer. Everyone's life is too busy. When it is all said and done, you still can't make a deal for what is behind door number three. God doesn't barter.
"Please, God, just let me have this Transformer on my birthday and I will never think bad thoughts about my brother again."
"Please, God, I know I am speeding, but just keep me safe this one time (even though it is deer season and the roads are icy) so I can make it to work on time. And keep all of the idiots off the road while you are at it."
"Please, God, my family and friends really, really need me."
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