One of my favorite forms of relaxation is sitting in a hot bath, usually with bubbles, reading a magazine or trashy novel. According to my oncologist's office, bubble baths may cause urinary tract infections (UTI) in chemo patients. As I understand it, the UTI is caused by the chemicals in the commercially produced bubble baths. The thought of getting a UTI while on chemo made me fearful, so I was sad at the thought of 5 months with no relaxing bubble baths.
For Christmas, Brandon made me homemade lavender bath bombs with all natural ingredients. He found the recipe online from Instructables.com. I believe most of the ingredients were found at a local health food store. He has two additional tips for anyone who wants to makes some bombs:
TIPS:
1) Measure dry ingredients by weight, not volume
2) Plan to triple the amount of wet ingredients called for. You might not use the whole mix, but you'll certainly need to use more than the recipe calls for.
I highly recommend these homemade bath bombs. The bath smelled great and the oils made my skin very soft. Once again, I can enjoy leisurely baths through the long winter nights.
29 December 2008
27 December 2008
The Third Day of Christmas
Happy Holidays (whatever that holiday may be) to everyone!
So I am surviving the my latest round of A/C chemo. My appetite has not been good. I've been feeling more nauseous than usual (but no vomit yet!). And the exhaustion, aches, and pains are not going away.
Brandon and I chose to not travel for our holidays this year. The reason for this season was chemo. Holiday travel can be very stressful, and my body shouldn't be overly taxed. As it turns out, I had chemo scheduled for 2 days before Christmas so we couldn't reasonably plan to travel anywhere. We celebrated our first Christmas as a married couple with a tree, our cats, and a delicious meal at the local Chinese (non-buffet) restaurant. I ate a double serving of wonton soup, a couple of steamed dumplings, and a bite or two of crab rangoon. Brandon ordered beef in brown sauce, without vegetables but as per usual at this restaurant, the order was confused and the beef arrived with mounds of delicious looking broccoli. So now the broccoli leftovers await me in the refrigerator.
I love broccoli. Naively, I thought my love of broccoli would keep me safe from ever getting cancer. A quick Google search proves that I am not crazy, and broccoli is considered a cancer-fighting-healer vegetable, see here. So my love of broccoli now confuses me. I'm not sure how to take this next step in our relationship. How can I trust broccoli again? Sure it is still delicious and can be prepared in a variety of salads, soups, pastas, casseroles, etc..., but I counted on broccoli to protect me from a horrible disease, and broccoli failed me. So what is the moral of this tale? Don't count on food to stop cancer.
So I am surviving the my latest round of A/C chemo. My appetite has not been good. I've been feeling more nauseous than usual (but no vomit yet!). And the exhaustion, aches, and pains are not going away.
Brandon and I chose to not travel for our holidays this year. The reason for this season was chemo. Holiday travel can be very stressful, and my body shouldn't be overly taxed. As it turns out, I had chemo scheduled for 2 days before Christmas so we couldn't reasonably plan to travel anywhere. We celebrated our first Christmas as a married couple with a tree, our cats, and a delicious meal at the local Chinese (non-buffet) restaurant. I ate a double serving of wonton soup, a couple of steamed dumplings, and a bite or two of crab rangoon. Brandon ordered beef in brown sauce, without vegetables but as per usual at this restaurant, the order was confused and the beef arrived with mounds of delicious looking broccoli. So now the broccoli leftovers await me in the refrigerator.
I love broccoli. Naively, I thought my love of broccoli would keep me safe from ever getting cancer. A quick Google search proves that I am not crazy, and broccoli is considered a cancer-fighting-healer vegetable, see here. So my love of broccoli now confuses me. I'm not sure how to take this next step in our relationship. How can I trust broccoli again? Sure it is still delicious and can be prepared in a variety of salads, soups, pastas, casseroles, etc..., but I counted on broccoli to protect me from a horrible disease, and broccoli failed me. So what is the moral of this tale? Don't count on food to stop cancer.
22 December 2008
21 December 2008
Hair Away
Hair is mostly gone now. I wonder if spray-on hair is still available for purchase? If I remember correctly from the late night infomercials, spray-on hair needed hairs to attach, of which I've got plenty random ones sprouting out of my head.
17 December 2008
It's raining hair
The wig is still in its bag. I am not going to wear it until I absolutely need it. I still have hair on my head. Luckily (or not so much so) I have tons of hair. My hair is thin and I have tons of it. My massive amount of hairs means I am able to delay the inevitable of the wig, but at the same time, it means cleaning up after the many hairs on my pillow in the mornings, or removing the clumps of hair on my hands (or from the shower drain) when washing my hair, or just finding hairs on my scarf at the end of the day.
My hair is everywhere. It is worse than the cats' fur. This evening was spent wrapping packages for the family. Not only will my relatives be receiving thoughtful gifts, but also strands of my hair. As much as I tried to catch all the hair, as I boxed up the packages to be mailed, I would see hairs stuck in the tape on what was an otherwise beautifully wrapped package.
Bizarrely enough, at a work holiday function, a colleague complimented me on my hair style. I'm not sure what that means about my hair on other days since my current style is whatever I can manage without using any hair styling implements (also known as brushes and combs). I even have a slight "comb-over" to cover a tiny, developing bald spot along my part. Is it now hip to be a partially balding young woman? Or have I just been in rural Ohio too long?
My hair is everywhere. It is worse than the cats' fur. This evening was spent wrapping packages for the family. Not only will my relatives be receiving thoughtful gifts, but also strands of my hair. As much as I tried to catch all the hair, as I boxed up the packages to be mailed, I would see hairs stuck in the tape on what was an otherwise beautifully wrapped package.
Bizarrely enough, at a work holiday function, a colleague complimented me on my hair style. I'm not sure what that means about my hair on other days since my current style is whatever I can manage without using any hair styling implements (also known as brushes and combs). I even have a slight "comb-over" to cover a tiny, developing bald spot along my part. Is it now hip to be a partially balding young woman? Or have I just been in rural Ohio too long?
14 December 2008
Hair Update
The hair is falling out. Not in huge clumps, but I woke up to a pillow case of hair. I knew the loss was impending when I washed my hair last night.
Just thought I would share the news.
Just thought I would share the news.
11 December 2008
Yam Biscuits
In an earlier post, "In a nutshell" dated 11/28/08, I mentioned enjoying yam biscuits. In a comment to that post, Nanette queried about the yam biscuits. To answer her question, the recipe came from a cookbook on how to eat healthy during chemo, Eating Well Through Cancer by Holly Clegg & Gerald Miletello, MD. My first chemo treatment was the day before Thanksgiving. So on Thanksgiving, I wasn't much in the mood for the traditional Thanksgiving meal (a meal which I adore so I'm going to need to find a time soon to eat the whole turkey, mashed potatoes, stuffing, cranberries, etc...) This cookbook did have a recipe for Yam Biscuits (p. 48). Brandon made me these biscuits, with a slight variation (he suggests checking Rose Levy Bernbaum's, the baking bible goddess, recipe). I love sweet potatoes (except for the marshmallow dish that for some reason shows up on so many holiday tables), so my Thanksgiving dinner was yam biscuits, served with chicken noodle soup.
Book citations:
Beranbaum, Rose Levy. The Bread Bible. New York: W.W. Norton & Company, 2003. p. 136-138.
Clegg, Holly and Gerald Miletello, M.D. Eating Well Through Cancer: Easy Recipes & Recommendations During & After Treatment. Nashville, TN: Favorite Recipes Pess, 2006. p. 48
Book citations:
Beranbaum, Rose Levy. The Bread Bible. New York: W.W. Norton & Company, 2003. p. 136-138.
Clegg, Holly and Gerald Miletello, M.D. Eating Well Through Cancer: Easy Recipes & Recommendations During & After Treatment. Nashville, TN: Favorite Recipes Pess, 2006. p. 48
Round 2 ... The Next Day
Just wanted to let y'all know that it has been about 24 hours since my I received my infusion of the toxic, burning drugs, and I don't feel as bad as I did the last time. Each day is different so tomorrow could be a whole new day of feeling crappy.
Last night was not pleasant. I felt pretty nauseated -- enough so that I took one of my "as needed" anti-nausea drugs. All I had for dinner was lots o' water, a milkshake (before the nausea kicked in, so maybe it was the milkshake), and saltines.
In a couple of hours, I'll head back to the clinic to get the shot that will help my white blood cell count return to normal at a faster rate than if we let "nature" take its course. A normal course would take 3 weeks. With the shot, it only takes 2 weeks. This is the shot that makes my bones ache because it also works on the blood cells in my bones.
And the best news of all (so far) is that I haven't experienced any hair loss... yet. It's supposed to start today.
Last night was not pleasant. I felt pretty nauseated -- enough so that I took one of my "as needed" anti-nausea drugs. All I had for dinner was lots o' water, a milkshake (before the nausea kicked in, so maybe it was the milkshake), and saltines.
In a couple of hours, I'll head back to the clinic to get the shot that will help my white blood cell count return to normal at a faster rate than if we let "nature" take its course. A normal course would take 3 weeks. With the shot, it only takes 2 weeks. This is the shot that makes my bones ache because it also works on the blood cells in my bones.
And the best news of all (so far) is that I haven't experienced any hair loss... yet. It's supposed to start today.
10 December 2008
Chemo... Round 2
Round 2 of 4 is completed! I am at home on the couch after receiving my second round of A/C. We were able to use the port which made the who process much easier and the nurses did not have to worry about any chemical burns in my arms (unlike last time when the A drug turned my vein red and we needed to ice it before I was allowed to go home).
One of the pre-chemo drugs that I receive, besides, one of the many anti-nausea drugs that I take) is a steroid which gives me lots of superficial energy and can cause insomnia -- although my week of only sleeping 2 hours at a time is probably not related to the steroid but it could be (each person is different, so we can never say for sure blah blah blah). So right now I've got this bizarre burst of energy which I can feel fading as I type this post.
I have an ice pack on my head in hopes that the coolness might help me retain some of my hair. After the last round of chemo, I had the occasional brain "hot flashes" so I'm also hoping the ice will also help decrease the reccurence of those instances. According to the woman who did my wig (another story which I will post soon), my hair should begin to start falling out tomorrow. So while my gut feeling is the ice pack is an old wives tale, I'm at home alone with cats getting ready to settle down for an afternoon of TV marathons (I'm thinking Grey's Anatomy, but I also still have a few episodes of the first season of the Tudors --- decisions, decisions) so what can it hurt to have an ice pack on my head. I must say it is quite a look, and I'm sure the UPS delivery person was slightly concerned when he dropped off a package. Didn't expect someone to come to the door today, but I do love to get packages!
And I'm crashing... in 4....3....2....1.....
One of the pre-chemo drugs that I receive, besides, one of the many anti-nausea drugs that I take) is a steroid which gives me lots of superficial energy and can cause insomnia -- although my week of only sleeping 2 hours at a time is probably not related to the steroid but it could be (each person is different, so we can never say for sure blah blah blah). So right now I've got this bizarre burst of energy which I can feel fading as I type this post.
I have an ice pack on my head in hopes that the coolness might help me retain some of my hair. After the last round of chemo, I had the occasional brain "hot flashes" so I'm also hoping the ice will also help decrease the reccurence of those instances. According to the woman who did my wig (another story which I will post soon), my hair should begin to start falling out tomorrow. So while my gut feeling is the ice pack is an old wives tale, I'm at home alone with cats getting ready to settle down for an afternoon of TV marathons (I'm thinking Grey's Anatomy, but I also still have a few episodes of the first season of the Tudors --- decisions, decisions) so what can it hurt to have an ice pack on my head. I must say it is quite a look, and I'm sure the UPS delivery person was slightly concerned when he dropped off a package. Didn't expect someone to come to the door today, but I do love to get packages!
And I'm crashing... in 4....3....2....1.....
08 December 2008
And the winner is...
Thank you to everyone who submitted an entry in the "October Surprise" contest. I apologize for the delay in announcing the winner. All of the entries were delightful. Without your help, I would never have learned about the existence of the Warriors in Pink Mustang or pink hair extensions or pink paper towels or pinkly decorated moisturizer bottles, and even pink tic tacs. You simply cannot escape the pink during the month of October. The color pink can be found just about anywhere promoting all kinds of merchandise. So from among all of these wonderfully crazy submissions, I have chosen a winner.
And the winner is... Nanette! She submitted the Julie Goloski Military & Police Pistol. To read the more about the gun and its design, check out Julie Goloski's blog. I really can't believe this item exists. I also love that the ad says that some money will be donated to a "breast cancer awareness charity." Is it just me, or is the phrasing of that statement extremely vague?
Why did I choose Nanette's entry? Because she found an item that raises money for a breast cancer organization by promoting an item designed to kill people. I'm not really sure what else to say. The concept of the pink gun stuns me.
Nanette has a choice of prizes: a weekend in Ohio! (travel to/from Ohio not included) or a t-shirt from the college where I work. If she chooses to visit Ohio, we might even be able arrange for an afternoon at a local shooting range.
And the winner is... Nanette! She submitted the Julie Goloski Military & Police Pistol. To read the more about the gun and its design, check out Julie Goloski's blog. I really can't believe this item exists. I also love that the ad says that some money will be donated to a "breast cancer awareness charity." Is it just me, or is the phrasing of that statement extremely vague?
Why did I choose Nanette's entry? Because she found an item that raises money for a breast cancer organization by promoting an item designed to kill people. I'm not really sure what else to say. The concept of the pink gun stuns me.
Nanette has a choice of prizes: a weekend in Ohio! (travel to/from Ohio not included) or a t-shirt from the college where I work. If she chooses to visit Ohio, we might even be able arrange for an afternoon at a local shooting range.
A tummy tuck is included
Sooo excited... I went for my 3 month post surgery doctor's appointment this morning. Even all these months later, I still really like my surgeon and her team. I'd love to go for afterwork drinks with these people. They just seem like really nice, fun, caring people. The first thing my doctor wanted to do was see wedding photos but sadly the hospital bans Facebook from their computers (what's up with that!?!?), so I promised the doctor that I would email her the link to our photos when the photographer let's us know that the photos are ready.
But the reason why I am soooo excited... my surgeon arranged for me to get an appointment with one of the few doctors in the country who does the diep flap reconstruction surgery. The diep flap surgery uses only stomach fat, no muscle, to build a breast. This means that if I am fertile after all of my chemo treatment (50/50 odds), I will also be physically able to have a baby. The more mainstream reconstructive surgical procedure, called the tram flap, uses stomach muscle & fat, but destroys any future hopes of pregnancy for me. The tram flap is fine for post-menopausal women or women who don't plan to have children, but not for me who hopes to one day be pregnant.
Yippee!!!
And my scar is healing nicely.
But the reason why I am soooo excited... my surgeon arranged for me to get an appointment with one of the few doctors in the country who does the diep flap reconstruction surgery. The diep flap surgery uses only stomach fat, no muscle, to build a breast. This means that if I am fertile after all of my chemo treatment (50/50 odds), I will also be physically able to have a baby. The more mainstream reconstructive surgical procedure, called the tram flap, uses stomach muscle & fat, but destroys any future hopes of pregnancy for me. The tram flap is fine for post-menopausal women or women who don't plan to have children, but not for me who hopes to one day be pregnant.
Yippee!!!
And my scar is healing nicely.
07 December 2008
Hair Today, Gone Tomorrow
Hair -- the first thing I think of when I hear the word chemo is bald people. Chemo makes people lose their hair. Since being diagnosed with cancer, I have learned that not everyone loses their hair. Some people don't lose their hair towards the end of their treatment. Some people don't lose it at all (and contribute their hair retention to ice packs). In the end, I think, in my all my pure and glowing ignorance of medicine, that the hair loss is dependent upon the drugs and an individual's body's reaction to the drugs.
The drugs that I am currently receiving, Adriamycin and Cytoxin, cause hair loss, or alopecia, as hair loss is medically-referred. Everytime I think of alopecia, I think of Stan Sitwell on "Arrested Development" whose eyebrows kept falling off of his face. With the AC drugs, first I'll begin to lose my hair in patches. Any hair that I don't lose with AC will be gone with when I begin Taxol (in mid-January), including eyebrows and eyelashes.
I am due to lose my hair sometime next week. I am not sure exactly when but it is soon. Yesterday I went to get my hair cut at a salon. My hair was very long, a little past my shoulders; the longest it had been in years. The stylist cut my hair fairly short, and thinned it out a bit. I have a lot of hair -- lots and lots of strands of hair. I'm not looking forward to cleaning up after the clumps as they fall out. I did purchase a silk pillowcase. Supposedly it well help me retain my hair for a little but longer; I don't really see how but am willing to give it a try.
The drugs that I am currently receiving, Adriamycin and Cytoxin, cause hair loss, or alopecia, as hair loss is medically-referred. Everytime I think of alopecia, I think of Stan Sitwell on "Arrested Development" whose eyebrows kept falling off of his face. With the AC drugs, first I'll begin to lose my hair in patches. Any hair that I don't lose with AC will be gone with when I begin Taxol (in mid-January), including eyebrows and eyelashes.
I am due to lose my hair sometime next week. I am not sure exactly when but it is soon. Yesterday I went to get my hair cut at a salon. My hair was very long, a little past my shoulders; the longest it had been in years. The stylist cut my hair fairly short, and thinned it out a bit. I have a lot of hair -- lots and lots of strands of hair. I'm not looking forward to cleaning up after the clumps as they fall out. I did purchase a silk pillowcase. Supposedly it well help me retain my hair for a little but longer; I don't really see how but am willing to give it a try.
01 December 2008
My First Time
So far the worst part of chemo is the exhaustion. I am constantly tired but I can't sleep. Unless I medicate with pain or anti-anxiety pills, I cannot stay asleep for longer than 2 hours at a time. And everytime I wake-up, I need to urinate. With the lone bathroom in my house being on another floor than my bedroom, this is an annoyance I could really do without. Plus by the time I shuffle back to bed, one of the cats has claimed more space on the bed than she really needs - an ongoing battle.
Last Tuesday my port was installed. The bruising on my shoulder and arm from the installation procedure was extensive, so the cancer nurses decided that I would receive my first treatment via IV in my arm. Brandon and I spent practically the whole day in the cancer clinic going over the treatment plan, the side effects in detail, and how to live our lives for the next 5 months.
I won't bore you with the not-so lurid details. I had multiple drugs injected into me via IV while I sat in a comfy recliner, ate some lunch and watched a "Law & Order" marathon. The whole chemo process was quite uneventful.
The big excitement for me was from to the redness of one of the chemo drugs, Adriamycin. The drug is bright red My urine was red immediately afterward the injection. My vein also turned red and I had to put an ice pack on it for about 30 minutes before I left the clinic. I am very sensitive. At times I want to think about all this stuff being pumped inside of me but other times I think ignorance is a wonderful state.
One of the any side effects of chemo is urine that can burn other people -- a super power I never thought I would have. In reality all that means is that I must flush twice for about 72 hours after chemo. Then my urine returns to human strength.
Other side effects seem to include lightheaded-ness and achy joints (supposedly more achy joints are to come so I'll be thankful for the little achy right now). I've got 5 more months of fun side effects to discuss so I'll keep you posted as they arrive. If all goes according to plan (and my blood cell count plays along), I should complete chemo in mid-April. Having an end in sight makes all of this seem do-able.
Last Tuesday my port was installed. The bruising on my shoulder and arm from the installation procedure was extensive, so the cancer nurses decided that I would receive my first treatment via IV in my arm. Brandon and I spent practically the whole day in the cancer clinic going over the treatment plan, the side effects in detail, and how to live our lives for the next 5 months.
I won't bore you with the not-so lurid details. I had multiple drugs injected into me via IV while I sat in a comfy recliner, ate some lunch and watched a "Law & Order" marathon. The whole chemo process was quite uneventful.
The big excitement for me was from to the redness of one of the chemo drugs, Adriamycin. The drug is bright red My urine was red immediately afterward the injection. My vein also turned red and I had to put an ice pack on it for about 30 minutes before I left the clinic. I am very sensitive. At times I want to think about all this stuff being pumped inside of me but other times I think ignorance is a wonderful state.
One of the any side effects of chemo is urine that can burn other people -- a super power I never thought I would have. In reality all that means is that I must flush twice for about 72 hours after chemo. Then my urine returns to human strength.
Other side effects seem to include lightheaded-ness and achy joints (supposedly more achy joints are to come so I'll be thankful for the little achy right now). I've got 5 more months of fun side effects to discuss so I'll keep you posted as they arrive. If all goes according to plan (and my blood cell count plays along), I should complete chemo in mid-April. Having an end in sight makes all of this seem do-able.
28 November 2008
In a nutshell...
... chemo sucks. I will write about my experience later but for now I just wanted to let everyone know that I survived my first round but I am exhausted and don't feel like myself. I am not sure how I am going to get through 5 months. All I want to do is sleep and eat carbs. mmmm yam biscuits.
25 November 2008
Tomorrow, will there be any sun?
Tomorrow for me will not be the day that lil' orphan Annie sang about. I don't see the sun coming out for me (figuratively and literally). Tomorrow chemo begins. I have no idea what to expect which is very scary for me. I like to plan. I like to anticipate. I can't even buy food at the grocery store because I don't know what I will feel like eating. I can hope that this process will be easy, but no one can predict how my body will react to the chemo drugs.
Today the port was installed in my shoulder area. The site is very sore but I have some decent pain meds. The procedure was fairly simple. We arrived at the hospital this morning at 6am, and was home before 11:30am (and this includes a slight detour to the pharmacy at the grocery store).
The port is only a slight bump. I don't know how long it will remain inside me. The surgeon who put it in would like ports to remain for 2 years as a precaution (AKA just in case I need more chemo). The oncologist will tell me it can be removed in 5 months. I don't know if it will need to be removed when I have my reconstructive surgery but that is months away so I am not going to worry about the removal process at this time.
The site of the port is slightly swollen (possibly due to my juicy fluids -- Jonathan, I thought of you when the swollen site was pointed out to me). The most exciting part for me was being told that I could take a shower later today. Thank goodness for the little things.
Today the port was installed in my shoulder area. The site is very sore but I have some decent pain meds. The procedure was fairly simple. We arrived at the hospital this morning at 6am, and was home before 11:30am (and this includes a slight detour to the pharmacy at the grocery store).
The port is only a slight bump. I don't know how long it will remain inside me. The surgeon who put it in would like ports to remain for 2 years as a precaution (AKA just in case I need more chemo). The oncologist will tell me it can be removed in 5 months. I don't know if it will need to be removed when I have my reconstructive surgery but that is months away so I am not going to worry about the removal process at this time.
The site of the port is slightly swollen (possibly due to my juicy fluids -- Jonathan, I thought of you when the swollen site was pointed out to me). The most exciting part for me was being told that I could take a shower later today. Thank goodness for the little things.
19 November 2008
Radioactive (wo)man
Today snapshots were taken of my heart. The process used to take the pictures is called Muga. In a nutshell, I had some blood drawn. My blood is mixed with radioactive materials (for about 25 minutes), and then injected back into me. Finally, I laid down on a machine with a special camera, and pictures were taken of my heart. The best part of the procedure was not needing to wear a hospital gown. I was able to wear my clothes, I didn't even have to take off my shoes.
Why the pictures? Because one of the chemo drugs, Adriamycin, may cause heart problems. These pictures of my heart will let the doctor see if my heart is currently healthy; and then if so, be the baseline image of my heart for the doctors to refer as I proceed through chemo. I will need to probably go through this process at least 2 more times.
As I left the hospital, the technician handed me a card and told me that I am radioactive for 2 more days. If I were to need to go through a security machine during that time, this card would be for the guards to know that I am just radioactive and not carrying any weapons. I really want to go through a security line right now, but I have no reason to do so. Oh well...
Why the pictures? Because one of the chemo drugs, Adriamycin, may cause heart problems. These pictures of my heart will let the doctor see if my heart is currently healthy; and then if so, be the baseline image of my heart for the doctors to refer as I proceed through chemo. I will need to probably go through this process at least 2 more times.
As I left the hospital, the technician handed me a card and told me that I am radioactive for 2 more days. If I were to need to go through a security machine during that time, this card would be for the guards to know that I am just radioactive and not carrying any weapons. I really want to go through a security line right now, but I have no reason to do so. Oh well...
18 November 2008
Chemo on the books
My appointment yesterday went well. My adjuvant therapy will be scheduled at the local cancer clinic. Considering that we had snow yesterday, I am pleased with my decision. The thought of traveling to Columbus bi-weekly, and then weekly, during the worst driving months of the year was not appealing, not that I would be the driver.
Tamoxifen is off the table for now. I first told the breast navigator that I didn't want to take it. By the time it came up in conversation with the doctor, he explained that we could discuss it again later on, and that it is not a requirement. During the winter months, I'll get the test to find out if I am carrier of the BRCA genes. You can get this test will undergoing chemo treatments. If I am carrier of the gene, new decisions on preventative health measures and procedures will need to be made.
The doctor had also taken my fertility concerns seriously, and had even scheduled an appointment for me at a fertility clinic in Columbus. But since Brandon and I had been through the fertility discussion (re: egg storage) after conversations the Cleveland hospital, we had already decided to take our chances. Infertility treatments can be brutal on the body, and to start now would delay chemo even further. Plus we may already be infertile and not even know it. When the time comes to start our own family (with more than just us and the cats), we will see what happens. And adoption is always an option.
My chemo regimen is tentatively scheduled to begin next Wednesday (the day before Thanksgiving). The schedule is dependent upon the port installation which will hopefully happen on Tuesday, but it can't be scheduled until I meet with the surgeon on Monday morning. I don't know why it can't be scheduled beforehand, but the surgeon likes to discuss the procedure with her patients before scheduling it. I understand what is entailed with the procedure, and even if I didn't, it's not like the surgeon is going to say something to me that is going to change my mind. Stupid responsible medical professionals wanting to discuss everything with me beforehand.
While I am not excited to start chemo, I am reassured to have it scheduled which means that I also have an end date in sight. And I don't totally dislike my doctor -- that's good, right?
Tamoxifen is off the table for now. I first told the breast navigator that I didn't want to take it. By the time it came up in conversation with the doctor, he explained that we could discuss it again later on, and that it is not a requirement. During the winter months, I'll get the test to find out if I am carrier of the BRCA genes. You can get this test will undergoing chemo treatments. If I am carrier of the gene, new decisions on preventative health measures and procedures will need to be made.
The doctor had also taken my fertility concerns seriously, and had even scheduled an appointment for me at a fertility clinic in Columbus. But since Brandon and I had been through the fertility discussion (re: egg storage) after conversations the Cleveland hospital, we had already decided to take our chances. Infertility treatments can be brutal on the body, and to start now would delay chemo even further. Plus we may already be infertile and not even know it. When the time comes to start our own family (with more than just us and the cats), we will see what happens. And adoption is always an option.
My chemo regimen is tentatively scheduled to begin next Wednesday (the day before Thanksgiving). The schedule is dependent upon the port installation which will hopefully happen on Tuesday, but it can't be scheduled until I meet with the surgeon on Monday morning. I don't know why it can't be scheduled beforehand, but the surgeon likes to discuss the procedure with her patients before scheduling it. I understand what is entailed with the procedure, and even if I didn't, it's not like the surgeon is going to say something to me that is going to change my mind. Stupid responsible medical professionals wanting to discuss everything with me beforehand.
While I am not excited to start chemo, I am reassured to have it scheduled which means that I also have an end date in sight. And I don't totally dislike my doctor -- that's good, right?
16 November 2008
Ports of Call
Tomorrow I have my appointment with the local oncologist. This appointment will determine if I am healthy enough to begin chemotherapy. Hopefully allergies will not be a determinant because mine have been out of control all weekend. My nose will not stop running. Sneezing is fairly common as well.
Tomorrow's doctor is the one who wants me to take Tamoxifen. I do not want to take Tamoxifen. The other doctors I have seen have not recommended it is a course of action. My plan tomorrow is to inform the doctor that I will not be taking Tamoxifen. If he resists my plan, and tells me it is either his entire plan or nothing, I'll walk. I've already got another doctor lined up, waiting in the wings.
My decision to go with the local doctor came down to simple travel logistics. The thought of traveling to Columbus on a regular basis is unappealing for a variety of reasons: not sure how I'll feel during treatment, wear & tear on car, winter is approaching... Plus the chemo plan is the same (if I exclude mentioning the Tamoxifen, the clinical trial, and the ovarian freezing drugs).
Tomorrow is also an opportunity for the doctor to make a better impression on me. I guess you could say that I'm giving him a second chance. I really don't want to not like the doctor I'll be seeing regularly for 5 months. Luckily for me, the nurses in his office are very nice. All of my interactions with them have been very pleasant and informative.
If all goes according to plan, sometime in the next week or so, I will have a port surgically implanted in me. The port allows the chemo drugs easier access to my body. While not everyone gets a port, it is quite common. My veins are small, so a port is necessary otherwise the chemo drugs, if they were to come in contact with my skin, would burn me. I question the wisdom of putting drugs like that in my body, but I've been told it is for the greater good of my health. hmmmm...
After the port is installed, I don't know now long I have to wait to begin chemo. I hope soon. I just want it to be over.
Tomorrow's doctor is the one who wants me to take Tamoxifen. I do not want to take Tamoxifen. The other doctors I have seen have not recommended it is a course of action. My plan tomorrow is to inform the doctor that I will not be taking Tamoxifen. If he resists my plan, and tells me it is either his entire plan or nothing, I'll walk. I've already got another doctor lined up, waiting in the wings.
My decision to go with the local doctor came down to simple travel logistics. The thought of traveling to Columbus on a regular basis is unappealing for a variety of reasons: not sure how I'll feel during treatment, wear & tear on car, winter is approaching... Plus the chemo plan is the same (if I exclude mentioning the Tamoxifen, the clinical trial, and the ovarian freezing drugs).
Tomorrow is also an opportunity for the doctor to make a better impression on me. I guess you could say that I'm giving him a second chance. I really don't want to not like the doctor I'll be seeing regularly for 5 months. Luckily for me, the nurses in his office are very nice. All of my interactions with them have been very pleasant and informative.
If all goes according to plan, sometime in the next week or so, I will have a port surgically implanted in me. The port allows the chemo drugs easier access to my body. While not everyone gets a port, it is quite common. My veins are small, so a port is necessary otherwise the chemo drugs, if they were to come in contact with my skin, would burn me. I question the wisdom of putting drugs like that in my body, but I've been told it is for the greater good of my health. hmmmm...
After the port is installed, I don't know now long I have to wait to begin chemo. I hope soon. I just want it to be over.
14 November 2008
How to Shock a Customs Official
In the month since my last posting, I got married and went to the Caribbean for 2 weeks. The wedding was wonderful and the trip to St. Vincent and the Grenadines/Barbados was amazing. The stress of planning a wedding went away. I got sun burnt and drank plenty o' rum from a bevy of drink selections. I relaxed on the patio of our cottage enjoying the view of our garden and the sailboats in the bay. Hopefully we will return soon.
Before, during and the weeks immediately following the surgery, Brandon and I had put the honeymoon planning on hold as we were unsure about how I would feel and didn't have any details on the possibility of adjuvant therapy. Luckily all the doctors said it would be ok to go away. My full range of my arm's motions returned almost in full about 6 weeks after surgery. After we got the go-ahead from the doctors, we planned our trip at the last minute. Luckily the cottage in Bequai was still available and we were able to get a few hotel deals for the days in St. Vincent and Barbados.
My energy and strength were not at pre-surgery levels but in general I will say that I'm in good health. When we climbed the volcano in St. Vincent, it took me 2 1/2 hours rather than the predicted 1 3/4 hours. When we went snorkeling in the Tobago Cays, my arm became sore and tires more quickly than it usually does when I'm swimming. But I was still able to participate in these activities, and to me, that is the most important thing of all. Otherwise, I wouldn't have seen the clouds move away from the center of the volcano to see all the way inside or the turtle swimming the coral reef -- two of my favorite moments of the vacation.
I do have another favorite moment of the vacation that I will share. I have 2 prosthetic breasts. One breast is all cotton (the softie) which I've been using for about a month now (mastectomy patients need to wait about 8 weeks before using a true breast prosthesis). The other breast is silicone and very heavy. I don't wear it very often because of the weight, and I have only recently reached the 8 week mark (although I was given the ok to start wearing it at 6 weeks -- I must be a quick healer!). During the vacation I stored the silicone boob in its carrying case, a medium-sized blue vinyl box. I never placed the blue box in my checked bag on the airplane because I didn't want it to get lost and because it would have taken up a lot of room. So when traveling, the box was always in my carry-on bag.
At the Barbados airport customs area, for reasons unknown to us, the "I have nothing to declare" line was closed, and all passengers were required to go through the "I have something to declare" line. When it was our turn, the official questioned us about the food we might be bringing. We told her we had no food. She began to rummage through my carry-on bag, and she came upon the the zipped up blue vinyl box. She asked, "What is this?" and began to fiddle with the zipper. I responded, "I had a mastectomy 2 months ago, and that is my fake boob." She immediately halted, took a second, looked at me and said, "You're done. Go on."
In no way can I fully express the humor and bizarreness of that moment, but it was one of the most amusing moments of the trip for me. It still makes me smile.
Before, during and the weeks immediately following the surgery, Brandon and I had put the honeymoon planning on hold as we were unsure about how I would feel and didn't have any details on the possibility of adjuvant therapy. Luckily all the doctors said it would be ok to go away. My full range of my arm's motions returned almost in full about 6 weeks after surgery. After we got the go-ahead from the doctors, we planned our trip at the last minute. Luckily the cottage in Bequai was still available and we were able to get a few hotel deals for the days in St. Vincent and Barbados.
My energy and strength were not at pre-surgery levels but in general I will say that I'm in good health. When we climbed the volcano in St. Vincent, it took me 2 1/2 hours rather than the predicted 1 3/4 hours. When we went snorkeling in the Tobago Cays, my arm became sore and tires more quickly than it usually does when I'm swimming. But I was still able to participate in these activities, and to me, that is the most important thing of all. Otherwise, I wouldn't have seen the clouds move away from the center of the volcano to see all the way inside or the turtle swimming the coral reef -- two of my favorite moments of the vacation.
I do have another favorite moment of the vacation that I will share. I have 2 prosthetic breasts. One breast is all cotton (the softie) which I've been using for about a month now (mastectomy patients need to wait about 8 weeks before using a true breast prosthesis). The other breast is silicone and very heavy. I don't wear it very often because of the weight, and I have only recently reached the 8 week mark (although I was given the ok to start wearing it at 6 weeks -- I must be a quick healer!). During the vacation I stored the silicone boob in its carrying case, a medium-sized blue vinyl box. I never placed the blue box in my checked bag on the airplane because I didn't want it to get lost and because it would have taken up a lot of room. So when traveling, the box was always in my carry-on bag.
At the Barbados airport customs area, for reasons unknown to us, the "I have nothing to declare" line was closed, and all passengers were required to go through the "I have something to declare" line. When it was our turn, the official questioned us about the food we might be bringing. We told her we had no food. She began to rummage through my carry-on bag, and she came upon the the zipped up blue vinyl box. She asked, "What is this?" and began to fiddle with the zipper. I responded, "I had a mastectomy 2 months ago, and that is my fake boob." She immediately halted, took a second, looked at me and said, "You're done. Go on."
In no way can I fully express the humor and bizarreness of that moment, but it was one of the most amusing moments of the trip for me. It still makes me smile.
16 October 2008
My October Surprise... oops, I meant, My October Contest
In honor of all the pink that surrounds us, Brandon suggested a contest should be had. So we decided that whoever finds the most ridiculous corporate pink ad will win our contest.
How the contest will work:
1. Between now and 11/10 (when I return from my honeymoon), post as many photos or links selling or promoting pink items or concepts to the comments section of the blog. The less an item has to do with women or breast cancer, the better your chance is of winning (an example -- input zip code 43050).
2. If you see an item, and you don't have a camera phone, you may submit a written description of the item.
3. If there is a story behind the item, please tell. I love to read stories.
4. Brandon and I will review all submissions when we return. Together we will choose the most ridiculous submission.
5. The winner's submission will be posted on the blog.
6. I will try to find a prize while in the Caribbean.
Any questions?
How the contest will work:
1. Between now and 11/10 (when I return from my honeymoon), post as many photos or links selling or promoting pink items or concepts to the comments section of the blog. The less an item has to do with women or breast cancer, the better your chance is of winning (an example -- input zip code 43050).
2. If you see an item, and you don't have a camera phone, you may submit a written description of the item.
3. If there is a story behind the item, please tell. I love to read stories.
4. Brandon and I will review all submissions when we return. Together we will choose the most ridiculous submission.
5. The winner's submission will be posted on the blog.
6. I will try to find a prize while in the Caribbean.
Any questions?
Milk Hormones
Thank you, Jonathan, for bringing to my attention a petition to encourage General Mills, maker of Yoplait yogurt, to use rBGH free milk in the making of the yogurt. Here is the link to the petition: http://www.thinkbeforeyoupink.org/. Please tell General Mills what you think of their hormone yogurt.
I am not a scientist, nor am I making claims to be very knowledgeable about what I am going to share. But.... I am very worried about the milk hormones used on our cows. An example of one problem is young girls entering puberty at young ages. But my concern today is on cancer and these hormones. Studies have been done which show a correlation between these hormones and cancer. Here is a link to a Google search with the very simple search terms "rBGH" and "cancer," www.google.com
Some day I will do another post on rBGH (I've got wedding tasks at hand). For now, I will just tell you that I am very convinced that these dairy hormones are playing a role in the prevalence of breast cancer in young women. Yoplait is one of the first brand name foods that I remember participating the pink marketing campaign. For years, Yoplait has collected its pink wrapper tops in honor of the search for a cure. Maybe if General Mills really cares about women with breast cancer, they can be also be an early leader in using hormone-free milk for their yogurt.
I am not a scientist, nor am I making claims to be very knowledgeable about what I am going to share. But.... I am very worried about the milk hormones used on our cows. An example of one problem is young girls entering puberty at young ages. But my concern today is on cancer and these hormones. Studies have been done which show a correlation between these hormones and cancer. Here is a link to a Google search with the very simple search terms "rBGH" and "cancer," www.google.com
Some day I will do another post on rBGH (I've got wedding tasks at hand). For now, I will just tell you that I am very convinced that these dairy hormones are playing a role in the prevalence of breast cancer in young women. Yoplait is one of the first brand name foods that I remember participating the pink marketing campaign. For years, Yoplait has collected its pink wrapper tops in honor of the search for a cure. Maybe if General Mills really cares about women with breast cancer, they can be also be an early leader in using hormone-free milk for their yogurt.
14 October 2008
The Chemo Quandary
Because my larger tumor (the 2.3cm tumor) was invasive and triple-negative, the medical community recommends that I have chemotherapy. My quandary is not whether or not to have chemo but rather which hospital program to choose. I have seen 3 different doctors. Each doctor's plan is similar but different enough to give me pause. In some ways, the plan isn't even the issue that keeps me up at nights. My biggest concern regarding chemo is the infertility side effect. I am getting married in less than 2 weeks. While we weren't planning on starting a family immediately, I didn't think we might not be able to have children on our own. Now all I can think about is my fertility, and potential loss of it.
Chemotherapy causes women to experience premature menopause. After chemo, some women menstruate again, others do not. The doctors cannot predict who will and who won't menstruate again. The closer a woman is to the typical age of menopause, the more likely she is to remain menopausal. Younger women are more likely to resume menstruation, but not always.
With the rise of breast cancer in young women, I assumed that doctors would be more compassionate about the infertility side effect. But it turns out, that it is just me assuming that everyone should be knowledgeable and caring about what I want them to be knowledgeable and caring about. Silly me!
The three doctors that I have seen have three very different attitudes towards chemo and infertility. Let's compare doctors:
I am at the point in my research where I am wondering if I am on the only one concerned with this issue. I can find very little on medical information sites other than the fact that infertility is a side effect. My search of discussion boards turns up very little helpful advice (although I did find a new web discussion board on which doctors participate so maybe I'll get a breakthrough). While I am young to be breast cancer patient, am I young enough to not remain menopausal? One thing I am learning is that these potential fertility saving drugs have their own unpleasant side effects. It is all so confusing. And I have my own self-imposed deadline of choosing a doctor before I leave town for my wedding. Ack!
Does anyone out there have any practical advice or suggestions for me?
Chemotherapy causes women to experience premature menopause. After chemo, some women menstruate again, others do not. The doctors cannot predict who will and who won't menstruate again. The closer a woman is to the typical age of menopause, the more likely she is to remain menopausal. Younger women are more likely to resume menstruation, but not always.
With the rise of breast cancer in young women, I assumed that doctors would be more compassionate about the infertility side effect. But it turns out, that it is just me assuming that everyone should be knowledgeable and caring about what I want them to be knowledgeable and caring about. Silly me!
The three doctors that I have seen have three very different attitudes towards chemo and infertility. Let's compare doctors:
- Doctor #1: Chemo patients have a 50/50 of remaining infertile after chemo. Suggests meeting with an infertility specialist to discuss harvesting eggs. Option is expensive, stressful, and not guaranteed. Also tells me that drugs are available to "freeze" the ovaries in an attempt to preserve fertility.
- Doctor #2: Ignored my concerns about the infertility side effects. Did not really answer my question about Lupron and other similar drugs but rather suggested that this drug would only be necessary when and if I am on a hormone plan (which would follow chemo).
- Doctor #3: Aware of the infertility side effects. Offered to see if Zoladex might be made available to me.
I am at the point in my research where I am wondering if I am on the only one concerned with this issue. I can find very little on medical information sites other than the fact that infertility is a side effect. My search of discussion boards turns up very little helpful advice (although I did find a new web discussion board on which doctors participate so maybe I'll get a breakthrough). While I am young to be breast cancer patient, am I young enough to not remain menopausal? One thing I am learning is that these potential fertility saving drugs have their own unpleasant side effects. It is all so confusing. And I have my own self-imposed deadline of choosing a doctor before I leave town for my wedding. Ack!
Does anyone out there have any practical advice or suggestions for me?
12 October 2008
Pink, everywhere I look there is more pink
I can't help myself. I must comment again on the pink. If I leave my house to go almost anywhere, I see piles of pink. Last night, Brandon and I went to one of the central Ohio shopping districts. At the big box pet store, I found this pile of pink packaged cat food (see photographic proof). I almost screamed in rage. Cat food! Where will it end?
Whenever I see the displays of pink products, I feel perfectly justified in proclaiming, quite loudly, my disgust at the evils of pink marketing. At another big box store, I found, by the registers, pink Hanes underwear (with a note about continuing to refill the display through the entire month of October), pink Pepperidge Farm cookie bags, and pink Peppermint Patties. My rage continues, and there is no end in sight.
Maybe if I were further along in my psychological recovery, I would be fine with the Komen pink marketing campaign. But at this juncture, I am not mentally stable, and I am very fine with not being fine. When I am in these stores, its almost as if I want someone to say something to me. Maybe if I can release my breast cancer rage on some unsuspecting and innocent shopper, I'll feel better about myself.
I have already imagined the scenario. While in the grocery store, I am asking why must every brand name product be repackaged in the color pink. My voice is louder than normal. An older woman (age 55ish), who has never been diagnosed with breast cancer, will respond to my rhetorical query. Our conversation will go a little like this:
Her:"Honey, don't you know? October is breast cancer awareness month."
Me: "Of course, I know what month it is."
Her: "You should have more respect. Breast cancer is a disease that can affect all women."
Me: "Oh, I know. I know all too well. Less than 2 months ago, I was diagnosed with breast cancer, and last month, I lost one of my breasts."
After my last comment, the interaction would quickly devolve into me screaming obscenities and asking if she'd like to see my scars. Brandon or the store manager would need to step in and pull me away. The entire interaction would be no more than a couple of minutes, but I imagine it would be cathartic.
The odds of this imaginary scenario happening are quite slim as I will not be spending much time between now and the end of October in the big box stores. I've got a wedding to prepare for. And after the wedding, I'll be in the islands. Depending on the results of the presidential election, I may just remain in the islands.
10 October 2008
Barracuda
On a happy side note, after months of not playing, I am pleased to report that my Guitar Hero playing ability is still at its prior surgery capability. In fact, tonight, my first time playing since the surgery, I am earning some of my highest scores ever. Maybe only having one boob is the key?
06 October 2008
Post-Surgical Appointment
So after reviewing my prior posts, I realized that I never reported on my "official" post-surgery diagnosis. I apologize.
The Wednesday following my hospital stay, Brandon and I returned to Cleveland for my first post-surgical appointment. The hope was to have my drainage tube removed (which it wasn't). The stupid tube remained for 5 more days. It seems my body produces lots of fluid, so the decision was made to keep the tube in, rather than allow the fluid to build up inside of me, and possibly aspirate the fluid later (not a pleasant option).
The time for truth about my health status had come. Luckily, the initial surgical diagnosis did not change. My lymph nodes were clean.
The shocker was the discovery of a second malignant tumor. A baby tumor, 1mm in size, was found in another part of my breast tissue. The tumor had not spread (described as being contained within good tissue). The new tumor is hormone receptive unlike the first tumor. Two different cancerous tumors had been growing inside my right breast. Any doubts about having the mastectomy were erased with this report.
Immediately following my appointment with the surgical team was an appointment with an oncologist. I will discuss my oncology travails in a later post but I will explain why I met with one. Even though my lymph nodes are clean and the tumors are gone, the cancer could still remain lurking somewhere in my body. And that is why chemotherapy is next on my health agenda.
The Wednesday following my hospital stay, Brandon and I returned to Cleveland for my first post-surgical appointment. The hope was to have my drainage tube removed (which it wasn't). The stupid tube remained for 5 more days. It seems my body produces lots of fluid, so the decision was made to keep the tube in, rather than allow the fluid to build up inside of me, and possibly aspirate the fluid later (not a pleasant option).
The time for truth about my health status had come. Luckily, the initial surgical diagnosis did not change. My lymph nodes were clean.
The shocker was the discovery of a second malignant tumor. A baby tumor, 1mm in size, was found in another part of my breast tissue. The tumor had not spread (described as being contained within good tissue). The new tumor is hormone receptive unlike the first tumor. Two different cancerous tumors had been growing inside my right breast. Any doubts about having the mastectomy were erased with this report.
Immediately following my appointment with the surgical team was an appointment with an oncologist. I will discuss my oncology travails in a later post but I will explain why I met with one. Even though my lymph nodes are clean and the tumors are gone, the cancer could still remain lurking somewhere in my body. And that is why chemotherapy is next on my health agenda.
30 September 2008
Happy October!
AKA Breast Cancer Awareness Month
I must say that our corporate friends are really jumping on board to promote breast cancer awareness. Last month, while in Target, following one of my post-surgical appointments, I found an end-cap (might have even been 2) covered in pink kitchen appliances. Just what I need, a pink can opener! Doesn't Dyson makes a pink vacuum? The grocery store even has pink boxes of cereal (is it Cheerios, I can't remember).
My October issue of Real Simple published an article on breast cancer basics and ran plenty o' pink ribbon ads. I'm sure many other women's magazines did the same. Unfortunately, I am not in the mood for breast cancer awareness to be plastered everywhere. I'd like to leave my house to buy some milk & toilet paper, or read a magazine, and not be reminded.
I would also like to complain about this exploding marketing trend of pushing pink stuff but I can't because the marketing of this disease helps raise awareness, which raises money, which helps the medical community do further research, which is assisting my doctors and their teams with keeping me alive.
A friend of mine recently recommended to me an author who contributes to a blog which has entertained me with its witty sarcasm towards the commercialness of the breast cancer awareness month. So instead of complaining, I will share The Stupid Cancer Blog with you. Enjoy!
I must say that our corporate friends are really jumping on board to promote breast cancer awareness. Last month, while in Target, following one of my post-surgical appointments, I found an end-cap (might have even been 2) covered in pink kitchen appliances. Just what I need, a pink can opener! Doesn't Dyson makes a pink vacuum? The grocery store even has pink boxes of cereal (is it Cheerios, I can't remember).
My October issue of Real Simple published an article on breast cancer basics and ran plenty o' pink ribbon ads. I'm sure many other women's magazines did the same. Unfortunately, I am not in the mood for breast cancer awareness to be plastered everywhere. I'd like to leave my house to buy some milk & toilet paper, or read a magazine, and not be reminded.
I would also like to complain about this exploding marketing trend of pushing pink stuff but I can't because the marketing of this disease helps raise awareness, which raises money, which helps the medical community do further research, which is assisting my doctors and their teams with keeping me alive.
A friend of mine recently recommended to me an author who contributes to a blog which has entertained me with its witty sarcasm towards the commercialness of the breast cancer awareness month. So instead of complaining, I will share The Stupid Cancer Blog with you. Enjoy!
28 September 2008
Neither a cliche nor a coherent thought
My post today was going to be on the recent changes in my life but everything I wrote (and then erased) has been a cliche. Nobody wants to read that crap, and I don't want to write it. Sorry. Maybe I'll do it better next time. Instead here is an update on my weekend activities:
My sisters came to visit me this weekend. We had a great time. We watched movies, drank wine (the first drinks that I have had since surgery), went to a day spa, and ate like pigs. I am sad to see them leave. They drove away in their rental cars a little while ago so they can catch their respective flights back to urban civilization.
Last weekend was supposed to have been my bachelorette "party" weekend. The plan was to stay at our mother's condo at the beach in Delaware. I never knew any of the secret plans that my sister Jennifer had thought up, but I am sure it would have been great. Unfortunately, we had to cancel the weekend because I couldn't travel with a tube coming out of my side -- not an optimal set-up for a relaxing weekend with friends at the beach. The cancellation also meant that I am not going to experience my annual "dip the feet into the atlantic ocean" renewal. Maybe an explanation as to why this year has felt a little off? Every year I put my feet in the ocean, even for a minute.
A couple of friends did visit with me last weekend. One friend came for the night. We had a great time watching movies, staying up late chatting, eating pizza and other horrible foods, etc... Brandon and I met up with another friend in Columbus for lunch -- the lunch where I wore pajama pants to a nice restaurant (For those who are concerned about my state of (or absence of) dress, I have begun to wear jeans again).
It is nice to see friends and to pretend that my life is still normal, but I can barely close a car door on my own and my chest scars hurt. I must do these arm exercises in order to regain full mobility in my right arm. I'm not so good at remembering but the threat of going to physical therapy has me trying my best to do them at least every other hour or so. Hopefully my arm muscles will be back to their original state very soon. I'll soon need to regain the ability to lift a suitcase into an airplane's overhead luggage bin.
Ok, time for me to stop rambling. I've even bored myself. I'll try to do better next time. Sometimes a blog entry is just an opportunity for me to get some thoughts that are floating around in my head out into the open air. Whether the sharing of thoughts is a good idea or bad idea remains to be seen.
My sisters came to visit me this weekend. We had a great time. We watched movies, drank wine (the first drinks that I have had since surgery), went to a day spa, and ate like pigs. I am sad to see them leave. They drove away in their rental cars a little while ago so they can catch their respective flights back to urban civilization.
Last weekend was supposed to have been my bachelorette "party" weekend. The plan was to stay at our mother's condo at the beach in Delaware. I never knew any of the secret plans that my sister Jennifer had thought up, but I am sure it would have been great. Unfortunately, we had to cancel the weekend because I couldn't travel with a tube coming out of my side -- not an optimal set-up for a relaxing weekend with friends at the beach. The cancellation also meant that I am not going to experience my annual "dip the feet into the atlantic ocean" renewal. Maybe an explanation as to why this year has felt a little off? Every year I put my feet in the ocean, even for a minute.
A couple of friends did visit with me last weekend. One friend came for the night. We had a great time watching movies, staying up late chatting, eating pizza and other horrible foods, etc... Brandon and I met up with another friend in Columbus for lunch -- the lunch where I wore pajama pants to a nice restaurant (For those who are concerned about my state of (or absence of) dress, I have begun to wear jeans again).
It is nice to see friends and to pretend that my life is still normal, but I can barely close a car door on my own and my chest scars hurt. I must do these arm exercises in order to regain full mobility in my right arm. I'm not so good at remembering but the threat of going to physical therapy has me trying my best to do them at least every other hour or so. Hopefully my arm muscles will be back to their original state very soon. I'll soon need to regain the ability to lift a suitcase into an airplane's overhead luggage bin.
Ok, time for me to stop rambling. I've even bored myself. I'll try to do better next time. Sometimes a blog entry is just an opportunity for me to get some thoughts that are floating around in my head out into the open air. Whether the sharing of thoughts is a good idea or bad idea remains to be seen.
23 September 2008
Order of Events, Will it ever end?
My mother arrived in Ohio the night before the appointment at the Breast Clinic. The three of us (Brandon, my mother, and me) woke up at 5:30am to be in Cleveland in time for my breast MRI, which was scheduled for 8:40am. Thanks to Cleveland morning traffic, road construction in the city, and having never been to the Clinic before, we barely made it on time -- but we did. The MRI process took about 17 minutes. Lying totally still while having a slightly chilled fluid pumped into my bloodstream via an IV was surreal but not as horrible as I expected. I did not feel particular enclosed since the machine was open at each end. The noise of the machine was loud but I wore ear plugs which helped muffle the sound.
After the MRI, I completed the CCF's Health Quest, which is an electronic form required of most CCF patients. Someone told me it was for the anesthesiologist. The form is also used by the surgeons to determine your health levels in regards to surgery. In my pre-op appointment, many of my responses to this questionnaire were referenced.
Finally, around 10am, it was time to meet the surgeon and her team. The surgeon's team includes a physician's assistant, nurse, and secretary. Plus I met a few residents, interns and medical students throughout my surgical experience. I brought with me to Cleveland, my mammogram, ultrasound and pathology reports with me. My local hospital had overnighted my biopsy lab slides. The surgeon was able to see all of my medical reports before even meeting me.
As with the other surgeon, this one also did not sugarcoat the diagnosis. She explained what was happening on the inside of me, and the treatment options. She then briefly felt the lump and my lymph nodes. During our visit, she told me how many of her patients are young women. (What is causing so many women under 40 to develop malignant tumors in their breast? Anyone have any ideas?)
The surgeon arranged for us to have a consultation with a plastic surgeon to discuss reconstruction options. We learned about implants and various reconstruction surgeries with involve moving stomach muscle and/or fat to rebuild the breast. We had hoped to also meet with a radiologist but none were available on such short notice.
Early in the afternoon, we left Cleveland with a lot of information; and a lot of flowers and vegetables from the farmer's market located in the empty lot across from the breast clinic building. Every Wednesday a really nice farmer's market is available on the CCF campus.
The time to make a decision had arrived. I was armed with a lot of information, but no clear path on how to proceed. No one else would (or could) make this decision for me -- it was all mine; and I had no idea what to do.
After the MRI, I completed the CCF's Health Quest, which is an electronic form required of most CCF patients. Someone told me it was for the anesthesiologist. The form is also used by the surgeons to determine your health levels in regards to surgery. In my pre-op appointment, many of my responses to this questionnaire were referenced.
Finally, around 10am, it was time to meet the surgeon and her team. The surgeon's team includes a physician's assistant, nurse, and secretary. Plus I met a few residents, interns and medical students throughout my surgical experience. I brought with me to Cleveland, my mammogram, ultrasound and pathology reports with me. My local hospital had overnighted my biopsy lab slides. The surgeon was able to see all of my medical reports before even meeting me.
As with the other surgeon, this one also did not sugarcoat the diagnosis. She explained what was happening on the inside of me, and the treatment options. She then briefly felt the lump and my lymph nodes. During our visit, she told me how many of her patients are young women. (What is causing so many women under 40 to develop malignant tumors in their breast? Anyone have any ideas?)
The surgeon arranged for us to have a consultation with a plastic surgeon to discuss reconstruction options. We learned about implants and various reconstruction surgeries with involve moving stomach muscle and/or fat to rebuild the breast. We had hoped to also meet with a radiologist but none were available on such short notice.
Early in the afternoon, we left Cleveland with a lot of information; and a lot of flowers and vegetables from the farmer's market located in the empty lot across from the breast clinic building. Every Wednesday a really nice farmer's market is available on the CCF campus.
The time to make a decision had arrived. I was armed with a lot of information, but no clear path on how to proceed. No one else would (or could) make this decision for me -- it was all mine; and I had no idea what to do.
22 September 2008
A Whole New Me
My drainage tube was removed earlier this afternoon. I already feel better. The spot where the tube was inserted into me is still sore, but my mobility and my attitude are immensely improved. Plus my fear of the shower is gone, so a real shower is in my very near future. A sigh of relief is shared by all who live near me (including the cats).
19 September 2008
Sweat Pants
"Again with the sweatpants?"
"What? I'm comfortable."
"You know the message you're sending out to the world with these sweatpants? You're telling the world, 'I give up. I can't compete in normal society. I'm miserable, so I might as well be comfortable.'"
- Jerry and George, in "The Pilot"
(quote found on http://www.pkmeco.com/seinfeld/pilot.htm)
So what does it mean when you choose to only wear pajama pants? The only pants that I have worn in the past week are these exceptionally comfortable waffle pajama bottoms from Target. I now have these pants in 4 colors: turquoise, lightish purple, gray, and brown. I wear them everywhere, even to the mall in Cleveland (the brown ones), and I'll be wearing the gray pants to lunch in Columbus at what is considered a "nice" restaurant.
The rural town where I live is not known for its fashion sense. Brandon and I often joke about the clothing styles for the local youth being stuck in 1999. On OSU game days, many locals wander around town in OSU pajama pants. Many of the men in our town choose to go shirtless -- and let me add, very few of them are in the shape to be doing so. I even yelled out of my car once to one man asking him to put a shirt on (he was carrying one in his hand). Until recently, I even wondered if the man who lives across the street from us even owned a shirt other than his work shirt. Now that autumn approaches, he does seem to wear some t-shirt that may be NASCAR-related.
But I digress...
The reason behind my current fashion statement is comfort. I have a drainage tube attached to me that hopefully will be removed on Monday (although my current level of fluids is not decreasing at a rate considered good for tubal removal). All mastectomy patients have drainage tubes. I am lucky, I have only one tube. If more lymph nodes had been removed during srugery, I would have another tube. Until the tube is removed from me, I am not allowed to drive, and will continue to take antibiotics and pain meds. While I can't wait for the tube to be removed, I am fearful of the process. I am told that I will be asked to take a deep breath, and then the surgeon will just yank it out of me.
"What? I'm comfortable."
"You know the message you're sending out to the world with these sweatpants? You're telling the world, 'I give up. I can't compete in normal society. I'm miserable, so I might as well be comfortable.'"
- Jerry and George, in "The Pilot"
(quote found on http://www.pkmeco.com/seinfeld/pilot.htm)
So what does it mean when you choose to only wear pajama pants? The only pants that I have worn in the past week are these exceptionally comfortable waffle pajama bottoms from Target. I now have these pants in 4 colors: turquoise, lightish purple, gray, and brown. I wear them everywhere, even to the mall in Cleveland (the brown ones), and I'll be wearing the gray pants to lunch in Columbus at what is considered a "nice" restaurant.
The rural town where I live is not known for its fashion sense. Brandon and I often joke about the clothing styles for the local youth being stuck in 1999. On OSU game days, many locals wander around town in OSU pajama pants. Many of the men in our town choose to go shirtless -- and let me add, very few of them are in the shape to be doing so. I even yelled out of my car once to one man asking him to put a shirt on (he was carrying one in his hand). Until recently, I even wondered if the man who lives across the street from us even owned a shirt other than his work shirt. Now that autumn approaches, he does seem to wear some t-shirt that may be NASCAR-related.
But I digress...
The reason behind my current fashion statement is comfort. I have a drainage tube attached to me that hopefully will be removed on Monday (although my current level of fluids is not decreasing at a rate considered good for tubal removal). All mastectomy patients have drainage tubes. I am lucky, I have only one tube. If more lymph nodes had been removed during srugery, I would have another tube. Until the tube is removed from me, I am not allowed to drive, and will continue to take antibiotics and pain meds. While I can't wait for the tube to be removed, I am fearful of the process. I am told that I will be asked to take a deep breath, and then the surgeon will just yank it out of me.
Order of Events, Part Deux
So it seems in my earlier entry on my story, I left you waiting to learn more about my visit to the local surgeon. My mammogram and ultrasound results were ready on a Friday afternoon, and my doctor's office was able to arrange for an appointment with the local surgeon on the upcoming Monday afternoon. I was pleased with how quick the process was moving along.
My visit with the surgeon included meeting the local hospital's Breast Health Navigator, who is a nurse trained to assist women (I don't know about men) with breast health issues, including breast cancer. The surgeon asked me questions about my general health and then proceeded to say that she would like to do a biopsy on the lump; choosing to do a core needle biopsy AKA a stereotactic biopsy (For more information on the different types of biopsies available, see this page on breastcancer.org). What she did was remove multiple small pieces of the tumor for testing. A local anesthesia was used for the procedure, but even so, it was quite uncomfortable. Afterwards, Brandon, who was with me for the appointment, and I went to McDonald's where I ordered a Happy Meal because the toys were Star Wars related but I ended up with some bizarro Storm Trooper/Pan-like toy, instead of the Yoda that I had hoped for. I then returned home to watch a lie on the couch and watch bad movies while using a bag of frozen spinach as my ice pack (I needed to ice location of the biopsy).
The test results took a few days to come back from the lab, and while we had hoped to meet with the surgeon on Wednesday, the appointment did not happen until Friday afternoon. Based on what we learned, that was probably the best time. The surgeon did not waste any time telling us the results, which I liked. Although once the word "cancer" was spoken, I had difficulty focusing on the conversation which lasted about an hour. Prior to the appointment, my gut told me the diagnosis would be cancer, but actually hearing the word, is an experience I hope no one should ever have. Stunned would be the best way to describe my reaction, even now, almost a month later, I am still stunned. When did I become a cancer patient? This is not who I am, but from now on it will be one way to describe me (or, in the future, cancer survivor). It also now makes me a statistic. Who wants to be a statistic? Not me.
But back to the visit with surgeon...
Luckily Brandon was with me, so most of the conversation was between him, the surgeon, and the breast health navigator. Every once in a while, the surgeon would turn to me, force me to look at her, and tell me that "cancer is not a death sentence." From what I do remember, most of the conversation covered the pros and cons of the various options: a lumpectomy followed by radiation, a single mastectomy, or a double mastectomy. Also discussed was the suggestion to have genetic testing to find out of I am genetically predisposed to breast and ovarian cancers. Neither my father nor my mother can think of anyone in their families to have these cancers but then again, a long time ago, people just died. If we were living, 200 years ago, or even 50 years ago, I could have been one of those women who died young and no one would be sure of the causes. I have decided to have genetic testing but not yet.
I can't really say what else was discussed in the surgeon's office that afternoon since I wasn't really a participant. All I knew was that as soon as I left the doctor's office, I was going to call the Cleveland Clinic's Breast Clinic which will fast-track you for an appointment if you have never been there before and you have been recently diagnosed with breast cancer. I called the clinic and got an appointment for the next Wednesday.
My visit with the surgeon included meeting the local hospital's Breast Health Navigator, who is a nurse trained to assist women (I don't know about men) with breast health issues, including breast cancer. The surgeon asked me questions about my general health and then proceeded to say that she would like to do a biopsy on the lump; choosing to do a core needle biopsy AKA a stereotactic biopsy (For more information on the different types of biopsies available, see this page on breastcancer.org). What she did was remove multiple small pieces of the tumor for testing. A local anesthesia was used for the procedure, but even so, it was quite uncomfortable. Afterwards, Brandon, who was with me for the appointment, and I went to McDonald's where I ordered a Happy Meal because the toys were Star Wars related but I ended up with some bizarro Storm Trooper/Pan-like toy, instead of the Yoda that I had hoped for. I then returned home to watch a lie on the couch and watch bad movies while using a bag of frozen spinach as my ice pack (I needed to ice location of the biopsy).
The test results took a few days to come back from the lab, and while we had hoped to meet with the surgeon on Wednesday, the appointment did not happen until Friday afternoon. Based on what we learned, that was probably the best time. The surgeon did not waste any time telling us the results, which I liked. Although once the word "cancer" was spoken, I had difficulty focusing on the conversation which lasted about an hour. Prior to the appointment, my gut told me the diagnosis would be cancer, but actually hearing the word, is an experience I hope no one should ever have. Stunned would be the best way to describe my reaction, even now, almost a month later, I am still stunned. When did I become a cancer patient? This is not who I am, but from now on it will be one way to describe me (or, in the future, cancer survivor). It also now makes me a statistic. Who wants to be a statistic? Not me.
But back to the visit with surgeon...
Luckily Brandon was with me, so most of the conversation was between him, the surgeon, and the breast health navigator. Every once in a while, the surgeon would turn to me, force me to look at her, and tell me that "cancer is not a death sentence." From what I do remember, most of the conversation covered the pros and cons of the various options: a lumpectomy followed by radiation, a single mastectomy, or a double mastectomy. Also discussed was the suggestion to have genetic testing to find out of I am genetically predisposed to breast and ovarian cancers. Neither my father nor my mother can think of anyone in their families to have these cancers but then again, a long time ago, people just died. If we were living, 200 years ago, or even 50 years ago, I could have been one of those women who died young and no one would be sure of the causes. I have decided to have genetic testing but not yet.
I can't really say what else was discussed in the surgeon's office that afternoon since I wasn't really a participant. All I knew was that as soon as I left the doctor's office, I was going to call the Cleveland Clinic's Breast Clinic which will fast-track you for an appointment if you have never been there before and you have been recently diagnosed with breast cancer. I called the clinic and got an appointment for the next Wednesday.
18 September 2008
My Hospital Stay -- the quickie version
So it turns out that a hospital stay is not very relaxing. Nurses, technicians, residents, and interns all wandering in out of your room at all hours of the night and day. During my stay, mid-afternoon was probably the best time to sleep.
My operation went very well, and the initial biopsy done on my sentinel lymph node during surgery showed a clean path which means that the cancer did not spread to the lymph nodes (for more information on sentinel lymph nodes, see
this page from cancer.gov).
Due to some unexpected bleeding in the middle of the night after my surgery, followed by my blood pressure dropping to below 90 for a brief period of time, my surgeon suggested that I stay another night in the hospital. I must say that if you need to have breast surgery, the Cleveland Clinic is the place to go. Warm blankets before, during, and after surgery. Plus the CEO of the CCF wants all breast patients to stay on the VIP floor, so that was pretty cool. I had my own room, and Brandon was allowed to stay with me (he slept on a fold-out chair). The VIP floor has it own menu, so I was allowed to choose my meals, which were very nice. I had filet mignon for one of my dinners. Sadly I missed out on my blueberry pancakes when it was thought that I might need to return to surgery due to the bleeding.
So the reason why I am behind in updating the blog is not totally related to my health. Hurricane Ike whipped through my little town on Sunday night. We received no rain, but heavy winds which the local paper reported as being as strong as 75mph. The electrical power to my house has still not returned. I've heard that it might return this weekend which is not good news to the person who had hoped to watch lots of DVDs this week. I guess it is a good thing that I also like to read and sleep.
My operation went very well, and the initial biopsy done on my sentinel lymph node during surgery showed a clean path which means that the cancer did not spread to the lymph nodes (for more information on sentinel lymph nodes, see
this page from cancer.gov).
Due to some unexpected bleeding in the middle of the night after my surgery, followed by my blood pressure dropping to below 90 for a brief period of time, my surgeon suggested that I stay another night in the hospital. I must say that if you need to have breast surgery, the Cleveland Clinic is the place to go. Warm blankets before, during, and after surgery. Plus the CEO of the CCF wants all breast patients to stay on the VIP floor, so that was pretty cool. I had my own room, and Brandon was allowed to stay with me (he slept on a fold-out chair). The VIP floor has it own menu, so I was allowed to choose my meals, which were very nice. I had filet mignon for one of my dinners. Sadly I missed out on my blueberry pancakes when it was thought that I might need to return to surgery due to the bleeding.
So the reason why I am behind in updating the blog is not totally related to my health. Hurricane Ike whipped through my little town on Sunday night. We received no rain, but heavy winds which the local paper reported as being as strong as 75mph. The electrical power to my house has still not returned. I've heard that it might return this weekend which is not good news to the person who had hoped to watch lots of DVDs this week. I guess it is a good thing that I also like to read and sleep.
08 September 2008
Tomorrow is a big day!
Later this week, I will continue detailing the order of events that brought me to this monumental change in my life. But tomorrow, I will be in surgery. I just called the hospital and my surgery is scheduled for 9:30am. I am to report to the hospital at 8:30am. Since I am not allowed to eat or drink anything after midnight tonight, I am glad that the surgery is scheduled relatively early in the morning. And once I am in surgery, Brandon, my mother and father can go eat a huge breakfast, and I will be none the wiser :)
Earlier today I spoke with my physician's assistant who reassured me that the surgical scars will not interfere with my wedding dress lines. Phew! Last night I emailed a photo of the dress to the surgeon, who had promised to try to avoid cutting me in a way that would show any physical scars on my wedding day.
What I can't wrap my head around is how I don't even feel sick. I don't look sick. The lump isn't even painful. The bruise from my biopsy is the only visual detail of the horridness that is inside me. And tomorrow, I lose a breast. Very surreal, very surreal indeed.
Earlier today I spoke with my physician's assistant who reassured me that the surgical scars will not interfere with my wedding dress lines. Phew! Last night I emailed a photo of the dress to the surgeon, who had promised to try to avoid cutting me in a way that would show any physical scars on my wedding day.
What I can't wrap my head around is how I don't even feel sick. I don't look sick. The lump isn't even painful. The bruise from my biopsy is the only visual detail of the horridness that is inside me. And tomorrow, I lose a breast. Very surreal, very surreal indeed.
05 September 2008
Order of Events, Part 1
So... I randomly found the lump in my breast on the evening of 8/7. Thought it was a little strange, so I called my doctor's office the very next morning to make an appointment. Turns out, if you say you found a lump in your breast, a doctor's office will find an appointment for you very quickly (or least that is my experience). After a brief examination, the nurse practitioner decided the lump was worthy of further examination.
The earliest appointment I could get for a mammogram and ultrasound was the next Thursday (8/14). Having a mammogram is an odd experience. For those who have never had one, a mammogram involves having your breast squashed between 2 pieces of metal at a couple of different angles. For more information on mammograms, and a really great picture of one, go to:http://www.breastcancer.org/symptoms/testing/mammograms/mamm_tech.jsp
The mammogram provides proof that a mass exists in your breast area. I got to see my mammogram immediately following the x-rays, and was shown where the mass is located. The technician was very nice and explained the whole process to me beforehand so there were no nasty surprises. The next day, I was a little sore.
Immediately following the mammogram, I had an ultrasound (aka sonogram); well immediately following the snacks. My local hospital has this great snack collection of fruit cups, graham crackers (and other carb delights), and tea/cocoa for the ladies waiting for their next x-rays. The ultrasound provides the radiologist with a clearer picture of the shape and size of the mass. The ultrasound told my medical providers that I should meet with a surgeon, because whether or not the mass was malignant, it needed to be removed.
My mass is oddly shaped. I think that I was told it was 1.6cm x 1.8cm. Basically, the lump was described as very worrisome. I wish that I could remember the exact phrasing, but I believe that "worrisome due to malignancy concerns" was the statement on my lab report.
So next on my medical agenda was an appointment with the local surgeon...
The earliest appointment I could get for a mammogram and ultrasound was the next Thursday (8/14). Having a mammogram is an odd experience. For those who have never had one, a mammogram involves having your breast squashed between 2 pieces of metal at a couple of different angles. For more information on mammograms, and a really great picture of one, go to:http://www.breastcancer.org/symptoms/testing/mammograms/mamm_tech.jsp
The mammogram provides proof that a mass exists in your breast area. I got to see my mammogram immediately following the x-rays, and was shown where the mass is located. The technician was very nice and explained the whole process to me beforehand so there were no nasty surprises. The next day, I was a little sore.
Immediately following the mammogram, I had an ultrasound (aka sonogram); well immediately following the snacks. My local hospital has this great snack collection of fruit cups, graham crackers (and other carb delights), and tea/cocoa for the ladies waiting for their next x-rays. The ultrasound provides the radiologist with a clearer picture of the shape and size of the mass. The ultrasound told my medical providers that I should meet with a surgeon, because whether or not the mass was malignant, it needed to be removed.
My mass is oddly shaped. I think that I was told it was 1.6cm x 1.8cm. Basically, the lump was described as very worrisome. I wish that I could remember the exact phrasing, but I believe that "worrisome due to malignancy concerns" was the statement on my lab report.
So next on my medical agenda was an appointment with the local surgeon...
04 September 2008
August 2008
On 8/7/08, barely three weeks after I turned 34 years old, I found a lump in my breast. Two weeks later, a doctor told me it was cancer. Since finding the lump, my life has turned upside down and all around (shocking!).
The purpose of this blog is for me to share my experiences with the lump, and its after effects on my life, and the lives of those around me. I also have been told that journaling can be therapeutic. Plus, maybe I will learn to stop writing in the passive tone :)
The purpose of this blog is for me to share my experiences with the lump, and its after effects on my life, and the lives of those around me. I also have been told that journaling can be therapeutic. Plus, maybe I will learn to stop writing in the passive tone :)
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