Today is day 14 post chemo starting, which should be the day my hair starts really falling out. My DD ran her fingers through my hair last night and am alarming amount of hair came out. She was amazed that I didn't feel a thing. I have someone to shave my head on stand by. But I have a weird fascination with this process and don't want to shave it before it starts coming out.
Really, how many people get to experience this?? I do want it shaved in a mohawk first so I can take a picture and my 10yo DD wanted to shave hearts and stuff into it.
Thanksgiving was nice, my Mom's on Thursday and my other family (kinda ex inlaws) on Saturday. My sister really didn't show for Thanksgiving... a new low to our dysfunctional family ladder. Saturday was OK, seeing alot of people that I had not seen since diagnoses, so it was a little more emotionally charged.
Yesterday was bad emotionally for me, I had a unsolicited mental breakdown. I cried for a few hours for no obvious reason, well, no obvious reason other than cancer, chemo, holidays, family dysfunction....
Today, I see the oncologist to check my blood count, hope I am doing OK as there were alot of snotty kids running around this weekend and apparently there had been a pink eye break out.
So far, this whole cancer thing is very similar to finding out you are pregnant. It will be about a year of constant medical stuff, good days and bad days, weird cravings, and body changes. Hopefully, at the end of the year, I will have a new life, a cancer free life. But, just like with becoming a parent, nothing will ever be the same again.
I will always worry about cancer just like I worry about my kids. My body will be OK but it won't be the same. Being a parent, becoming pregnant was an irreversible action. Being diagnosed with the big C feels the same, everything changes a little or a lot, but everything changes.
Monday, November 30, 2009
Wednesday, November 25, 2009
11-25-09
Not doing too shabby, just still dealing with alot of chest congestion which is not chemo related and a mouth sore which is chemo related. Just feeling old and tired, I feel like the old ladies my kids keep telling me I am!
Today, 10yo DD and I will do some Thanksgiving cooking, it is her first year to cook, she has really developed an interest in food prep. And yesterday, she asked me to teach her to sew, so we are having some good Mom and Me time. My 12yo DD is a little more into her "tweendom", I miss her, she stays to herself most of the time. I don't think her solitude is cancer related, I think it is just the age.
Checked in with the oncology nurses yesterday, white blood cell count low for a normal person but OK for a chemo patient, I will call if I run a fever or if I need a scrip for the mouth sore.
Yay, my 10yo niece just arrived to hand out with us today, that will make for a fun day for the kiddos.
Going to go enjoy my day!
Today, 10yo DD and I will do some Thanksgiving cooking, it is her first year to cook, she has really developed an interest in food prep. And yesterday, she asked me to teach her to sew, so we are having some good Mom and Me time. My 12yo DD is a little more into her "tweendom", I miss her, she stays to herself most of the time. I don't think her solitude is cancer related, I think it is just the age.
Checked in with the oncology nurses yesterday, white blood cell count low for a normal person but OK for a chemo patient, I will call if I run a fever or if I need a scrip for the mouth sore.
Yay, my 10yo niece just arrived to hand out with us today, that will make for a fun day for the kiddos.
Going to go enjoy my day!
Monday, November 23, 2009
11-23-09
Purty good weekend, if I do say so myself. Saturday night, my Mom and I saw Mannheim Steamroller. You know how when you are pregnant, you always look around for other pregnant people. As it was my first time in a crowd since chemo started, I found myself looking for other cancer patients. Ooops, that was almost admitting I am a cancer patient, gotta watch out for that. One of my patients asked me this weekend, "I heard you had been sick", I said, "Just a head cold, getting better". Not a healthy delusion... I get that I have cancer, I am completely comfortable discussing it with people who know, I just don't feel compelled to tell "new" people.
I guess next week, I will be bald and the jig will be up...
I have developed a sensitivity to motion sickness, it was the first time in a car since chemo, had to stop for saltines and a barf bag. But no pukey, crossing fingers. Even the video screen at the concert made me queasy, I just keep praying "Don't let me puke during the show". I was in the middle of the aisle and I knew there would be no way to make a quick exit. So I was prepared to blow chunks into my coat and then make a graceful exit. But, no pukey!
Woke up this morning, waxing philosophical. Played around in my head for awhile. Thought about living with and without fear. Man, I used to have alot of fear. Now, not so much. So I was feeling all cocky thinking about the freedom from fear. Decided to check my bank balance and it hit me as I hit 'submit', fear...guess I haven't evolved as much as I thought. But the balance was OK, back to living a fear free day!
I guess next week, I will be bald and the jig will be up...
I have developed a sensitivity to motion sickness, it was the first time in a car since chemo, had to stop for saltines and a barf bag. But no pukey, crossing fingers. Even the video screen at the concert made me queasy, I just keep praying "Don't let me puke during the show". I was in the middle of the aisle and I knew there would be no way to make a quick exit. So I was prepared to blow chunks into my coat and then make a graceful exit. But, no pukey!
Woke up this morning, waxing philosophical. Played around in my head for awhile. Thought about living with and without fear. Man, I used to have alot of fear. Now, not so much. So I was feeling all cocky thinking about the freedom from fear. Decided to check my bank balance and it hit me as I hit 'submit', fear...guess I haven't evolved as much as I thought. But the balance was OK, back to living a fear free day!
Saturday, November 21, 2009
11-21-09
The "poopy fairy" woke me up this morning, what a welcome surprise! Gonna have to find something stronger than Colace to keep me moving.
Yesterday was good, didn't even have to take any meds for side effects, just for the chest cold. Food is starting to taste bad, not bad, just not there. I take a bite of something and it has no flavor at all, very odd experience.
I had ordered some scarves and a weighted foam "foob" and I received them in the mail yesterday. I like the scarves, I can do this. The "foob" was way too big and I did a lumpectomy at my desk, removing foam and stuffing trying to get it to a workable size. Today, I need to sew the case back together, not a case, but the lining stuff. It is weighted, so that should help my back and neck pain. It has a little pouch of beanie baby butt type stuff in it so give it some heft. My daughter took my "lumpectomy" stuffing and walked around with her bra stuffed, she's 12, boobs are great.
My "netherland" is tingling and not in a good way, hair is falling out. Too bad it is not bathing suit season. (I started to type in bikini season, but that delusion was too much for even me to handle!).
Yesterday was good, didn't even have to take any meds for side effects, just for the chest cold. Food is starting to taste bad, not bad, just not there. I take a bite of something and it has no flavor at all, very odd experience.
I had ordered some scarves and a weighted foam "foob" and I received them in the mail yesterday. I like the scarves, I can do this. The "foob" was way too big and I did a lumpectomy at my desk, removing foam and stuffing trying to get it to a workable size. Today, I need to sew the case back together, not a case, but the lining stuff. It is weighted, so that should help my back and neck pain. It has a little pouch of beanie baby butt type stuff in it so give it some heft. My daughter took my "lumpectomy" stuffing and walked around with her bra stuffed, she's 12, boobs are great.
My "netherland" is tingling and not in a good way, hair is falling out. Too bad it is not bathing suit season. (I started to type in bikini season, but that delusion was too much for even me to handle!).
Thursday, November 19, 2009
11-19-09
Yesterday was a bad day, and I am nervous about labeling something as "bad" because my definition of "bad" is as fluid as everything else is my life right now. I am hoping that my definition of "bad" will hold and that today doesn't teach me a new word.
Other than feeling like I have been run over by a truck, I am also having some anxiety about the irreversibility of what has happened. Along with all kinds of cells dying off in my body, my denial seems to be dying, little denial cells shriveling up and sloughing off.
I am pissed off for my kids, this is a crappy childhood experience for them. I am worried about who they will be when this is over. Being a divorced mom, there is not another grown up to pick up my slack. I did call for back up from a friend yesterday, but the kids get tired of other adults in the house trying to "parent" them. They want to handle it, the want me to handle it, they want there to be nothing to handle.
Other than feeling like I have been run over by a truck, I am also having some anxiety about the irreversibility of what has happened. Along with all kinds of cells dying off in my body, my denial seems to be dying, little denial cells shriveling up and sloughing off.
I am pissed off for my kids, this is a crappy childhood experience for them. I am worried about who they will be when this is over. Being a divorced mom, there is not another grown up to pick up my slack. I did call for back up from a friend yesterday, but the kids get tired of other adults in the house trying to "parent" them. They want to handle it, the want me to handle it, they want there to be nothing to handle.
Tuesday, November 17, 2009
11-17-09
This is the nurse injecting what they call "red devil" into the port in my chest. Good Times!
Yesterday was first chemo. The process wasn't bad at all. My port worked well, the stick didn't hurt, they hooked me up, gave me several bags of meds including the red devil which has to pushed in manually.
Of course, my insurance won't pay for the "cadillac" anti-nausea meds, so they sent me home with a scrip that is, crossing fingers, working. The nurse assured me that they did chemo for years using the protocol that me insurance will pay for and that I will be fine.
So I came home, a little hyper due to the steroids plus it being over. Feel asleep too early and ending up waking up every two hours. The chemo did seem to clear up my sinus congestion but the nausea meds cause nasal congestion! Oh well...
Made my first toxic poo today, thank goodness for prunes and colace which I took yesterday. I don't like constipation, it makes me grumpy. So I will continue to munch on prunes which I have never eaten before, but if all systems are go, prunes are my friend.
My daughter asked me if I decided which movies to take with me to chemo, I thought she asked which boobie to take to chemo! I had a hardy laugh about that and I could use all the laughs I can get. I ended up taking no movie and no boobie.
Monday, November 16, 2009
11-16-09
Today is the big day, first day of chemo. My days of denial are coming to an end. Up until now, I have considered myself a "surgical patient", as in, I had surgery, I am recouperating and I will be fine. After today, I won't be able to deny my cancer.
Yesterday, I thought alot about reality, truth and facts. That we create a reality based on the info we have at the time. I finally read my PET scan results and the facts are a tad different than I thought. So I have to adjust my reality to accomodate the facts. I used to think that reality was black and white, but now I realize it is fluid, changing with what we know to be true.
Someone asked me if I was sick yesterday, I lied and said no, I didn't want to change her reality. But my truth is that I am not sick. I have cancer, I have a sinus crud going on, the sinus issue makes me feel more sick than the cancer does. The cancer is only affecting me due to the surgery.
So let me document my progress so I can recall that I am getting better. My chest is tight every morning, I have to make a conscience effort to stretch it out. My arm does not have the active range that it should but does have about 90% of its passive range. My incision is still oozing a little, surgeon says it is just protein and not a problem. I keep gauze over my incision to catch the ooze and I tape gauze over my port to minimize the rubbing of the bra.
I am still wearing sports bras. There is not enough weight in the cushie foob to hold it down. So I can start the day even, but the real boob starts to drop and the fake boob migrates up and I get lopsided. So sports bras keep everything smushed and in place. Not attractive, but not deformed looking.
I was looking for info on homemade breast forms. I came across a message board of cross dressers with many helpful hints on how to get a nice shape and tips on "jiggle-bility". Very informative and amusing. The foob fitters want me to wait until all the swelling is down before they fit me for mastectomy bras and prothesis. Bird seed was recommended by the cross dressing community for shape, weight and jiggle, but hold the sunflower seeds, they poke.
Yesterday, I thought alot about reality, truth and facts. That we create a reality based on the info we have at the time. I finally read my PET scan results and the facts are a tad different than I thought. So I have to adjust my reality to accomodate the facts. I used to think that reality was black and white, but now I realize it is fluid, changing with what we know to be true.
Someone asked me if I was sick yesterday, I lied and said no, I didn't want to change her reality. But my truth is that I am not sick. I have cancer, I have a sinus crud going on, the sinus issue makes me feel more sick than the cancer does. The cancer is only affecting me due to the surgery.
So let me document my progress so I can recall that I am getting better. My chest is tight every morning, I have to make a conscience effort to stretch it out. My arm does not have the active range that it should but does have about 90% of its passive range. My incision is still oozing a little, surgeon says it is just protein and not a problem. I keep gauze over my incision to catch the ooze and I tape gauze over my port to minimize the rubbing of the bra.
I am still wearing sports bras. There is not enough weight in the cushie foob to hold it down. So I can start the day even, but the real boob starts to drop and the fake boob migrates up and I get lopsided. So sports bras keep everything smushed and in place. Not attractive, but not deformed looking.
I was looking for info on homemade breast forms. I came across a message board of cross dressers with many helpful hints on how to get a nice shape and tips on "jiggle-bility". Very informative and amusing. The foob fitters want me to wait until all the swelling is down before they fit me for mastectomy bras and prothesis. Bird seed was recommended by the cross dressing community for shape, weight and jiggle, but hold the sunflower seeds, they poke.
Sunday, November 15, 2009
Saturday, November 14, 2009
11-14-09
Yesterday, I met with the research nurse and signed up for being a breast cancer guinea pig. I did find out that due to my glowing lymph node, I am now a stage IIIc which is as close as being a stage IV as you can get. I would prefer if someone would just pluck this node out before it gets too comfortable. But maybe the node will act as a good marker to see if chemo is working.
Still having insurance issues, they won't pay for that $3K shot that keeps your white blood cell counts up. So, I may get a terrible infection that will result in a hospital stay which will cost more that the $3K. But I have to keep believing that everything is happening as it should and that it will all be OK. I don't kow what "OK" means, and I am working on letting go of that need to control "OK". My definition of OK meant raising my kids to adulthood, that really didn't seem like too much to ask.
Two of my neighbors have been robbed this week. I would like to post a note on the door "Dear Robbers, I am a single mom with cancer, I don't have any good stuff for you to take. If you have to break in, please don't let the cats run outside, losing the cats would devastate my children".
Still having insurance issues, they won't pay for that $3K shot that keeps your white blood cell counts up. So, I may get a terrible infection that will result in a hospital stay which will cost more that the $3K. But I have to keep believing that everything is happening as it should and that it will all be OK. I don't kow what "OK" means, and I am working on letting go of that need to control "OK". My definition of OK meant raising my kids to adulthood, that really didn't seem like too much to ask.
Two of my neighbors have been robbed this week. I would like to post a note on the door "Dear Robbers, I am a single mom with cancer, I don't have any good stuff for you to take. If you have to break in, please don't let the cats run outside, losing the cats would devastate my children".
Thursday, November 12, 2009
11-12-09
Yesterday was a good day, but my definition of good day has changed since my diagnoses. A good day is just a day where nothing bad happens.
The kids had a reaction to my news of not having a brain tumor. I guess I screwed up. I had not told them about the PET scan no they didn't know I was worried. Once I gave them the 'all clear', they got very bummed thinking of all the possibilities. I don't tell them things until I know the facts. I try not to worry them, so they still get the wind knocked out of them a little when they hear things about how bad this could have been.
Other than the lopsided chest and the short haircut, they don't see a drastic difference. I still don't "seem sick". Having my Mom and Sister around is weird for them, they miss their normalcy.
Still dealing with insurance issues. One of the meds I will need is like $3000 a shot! What is this stuff made of that could cost that much! Cancer is sure a money maker for the drug companies. Makes me wonder about conspiracy theories and such, but I won't waste my limited brain cells worried about that.
The kids had a reaction to my news of not having a brain tumor. I guess I screwed up. I had not told them about the PET scan no they didn't know I was worried. Once I gave them the 'all clear', they got very bummed thinking of all the possibilities. I don't tell them things until I know the facts. I try not to worry them, so they still get the wind knocked out of them a little when they hear things about how bad this could have been.
Other than the lopsided chest and the short haircut, they don't see a drastic difference. I still don't "seem sick". Having my Mom and Sister around is weird for them, they miss their normalcy.
Still dealing with insurance issues. One of the meds I will need is like $3000 a shot! What is this stuff made of that could cost that much! Cancer is sure a money maker for the drug companies. Makes me wonder about conspiracy theories and such, but I won't waste my limited brain cells worried about that.
Tuesday, November 10, 2009
11-10-09
Well, I don't have a brain tumor, this really is my personality!
Yeah, no mets, just a glowing lymph node which is no surprise.
Taking the kids out to celebrate!
Yeah, no mets, just a glowing lymph node which is no surprise.
Taking the kids out to celebrate!
Monday, November 9, 2009
11-9-09
Dealt with some depression this weekend, not having anything to do or anywhere to be is NOT good for me. But I did manage to pull out of it with a little pep talk from a friend.
Today, I went to a "Look Good, Feel Better" class, or a "how to not look like the walking dead while on chemo" class. Got some good tips and a bunch of free make-up. A little freaked out about eyebrows falling out. I can't imagine how you draw eyebrows on without them looking fake, or sliding down your face if your make-up runs. I am thinking I may just get bigger glasses, cover up the lack of eyebrows.
Also got a wig today from the ACS. The color is good, hopefully I can tweak the style. So I have the wig, some caps, still scarf shopping, I am just too cheap to pay $20 for a square of fabric.
Tomorrow I see the surgeon for follow up so he can check the port. Mastectomy scar still has one small spot that hasn't closed up. Then onto oncology to set up chemo schedule. I will get results of PET scan also, I could talk about the possibility of getting news that the cancer has spread...
But I won't.
Today, I went to a "Look Good, Feel Better" class, or a "how to not look like the walking dead while on chemo" class. Got some good tips and a bunch of free make-up. A little freaked out about eyebrows falling out. I can't imagine how you draw eyebrows on without them looking fake, or sliding down your face if your make-up runs. I am thinking I may just get bigger glasses, cover up the lack of eyebrows.
Also got a wig today from the ACS. The color is good, hopefully I can tweak the style. So I have the wig, some caps, still scarf shopping, I am just too cheap to pay $20 for a square of fabric.
Tomorrow I see the surgeon for follow up so he can check the port. Mastectomy scar still has one small spot that hasn't closed up. Then onto oncology to set up chemo schedule. I will get results of PET scan also, I could talk about the possibility of getting news that the cancer has spread...
But I won't.
Friday, November 6, 2009
11-06-09
For whatever reason, I was in a pretty good mood yesterday. I guess I just didn't realize how the anxiety of the port placement was getting to me. With the mastectomy and the hematoma surgery, I was ready for those, let's cut the bad stuff out. But with the port, I felt like I was volunteering for additional discomfort.
On the bright side, screwing up my left arm has done wonders for my right arm. I am not even aware of right arm discomfort!
On the bright side, screwing up my left arm has done wonders for my right arm. I am not even aware of right arm discomfort!
Thursday, November 5, 2009
11-5-09
Actually woke up feeling slightly renewed. I shouldn't have to be cut open again for awhile. That aspect is done. I am ready to start chemo, hopefully next week.
The port hurts, kinda in the left shoulder and chest area, not real bad, but not pleasant. I am taking 1/2 a pain pill, I don't have to drive anywhere today and I don't want to be uncomfortable and grumpy. I am grateful my neck doesn't hurt, apparently my port is placed a little differently than what I had read about.
The port hurts, kinda in the left shoulder and chest area, not real bad, but not pleasant. I am taking 1/2 a pain pill, I don't have to drive anywhere today and I don't want to be uncomfortable and grumpy. I am grateful my neck doesn't hurt, apparently my port is placed a little differently than what I had read about.
Wednesday, November 4, 2009
11-4-09
PET scan done and port put in today, it has been a long day. I am hoping the port won't make me too sore on the left side since the right side is still not up to snuff.
Tuesday, November 3, 2009
11-03-09
Today I go for my echocardiogram and see the surgeon to see if my infection is cleared up enough for him to put the port in tomorrow.
Yesterday, I had a major haircut, from shoulder length to 2 inches long. I figured it would be easier to transition to bald if there was a rest stop on the way. Plus, I have always wondered what I would look like with short hair. I figured if I hated it, it would be gone in a few weeks anyway.
I am morphing into something else... oddly, I am becoming more comfortable with what I am becoming. The stress comes when I try to appear "normal" to make everyone else more comfortable.
Yesterday, I had a major haircut, from shoulder length to 2 inches long. I figured it would be easier to transition to bald if there was a rest stop on the way. Plus, I have always wondered what I would look like with short hair. I figured if I hated it, it would be gone in a few weeks anyway.
I am morphing into something else... oddly, I am becoming more comfortable with what I am becoming. The stress comes when I try to appear "normal" to make everyone else more comfortable.
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