We escaped for another weekend--- I REALLY wanted the boys to get to do something special and fun this summer, and knew that our best chance to do that would be NOW--- when I know I feel good, won't have a compromised immune system, etc.
On Saturday, we went to the York's Wild Animal Kingdom zoo. It's such a GREAT place with lots of animals. Sammy is absolutely obsessed with animals, and especially "safari" type ones, so he was on Cloud 9. Almost DAILY he draws giraffes, elephants, tigers, etc. :-) I took pictures of the boys at different animal exhibits so they can make a "zoo book" with me this summer. I want it to be our special project.
After the zoo, we went to the hotel and they enjoyed the pool again. Last time, Stephen learned how to do the doggie paddle with his lifevest on, and this weekend, Sammy did it, too. I'm so glad that they had a fun time. THAT was my goal--- to get away with my kids and let them have a blast. :-)
Since the drain was out, I was able to play on the pool steps with Kathryn--- get into the water a bit without going so deep as to get my drain wound involved. That was a TREAT!
Stephen, Kaylee and I were tired, but we still had a fun time. I think we all needed the break to get refreshed before we get into a medical routine.
The twins loved the zoo so much that each time we reached a toll booth on the way back to the hotel they told their father to announce to the toll taker "We just went to the zoo." Ha! So, he'd kind of whisper "We just went to the zoo" and then he and I would laugh so hard. :-D Then, at I-HOP (the twins have been asking to go to an I-HOP for ages) that evening Sammy kept telling our waitress "We just went to the zoo." EVERY time she thought he was saying he wants dessert, so she'd tease him about that or just tell him he's silly. He tried to tell her about four or five times ---whenever she'd walk by. FINALLY, I just told her what he was really trying to say and she fussed about it with him. He was a happy camper. :0) The zoo was a BIG deal to that kid. :-)
Today, we tried to catch up on chores, lawn mowing, groceries, etc. Then, my parents and my friend and her son came to visit. We had a nice time---cooked burgers on the grill, caught up on some hometown news and people, and enjoyed visiting. The twins were thrilled to play with my friend's 13 year old son. :-)
Tomorrow, I need to study up on my chemo information packets--- the do's and don'ts, etc. There's so much information. I am supposed to take two steroids before bed tom. to help prevent swelling in my chest, arms and feet that the chemo can cause. The problem is--- the steroids keep you awake. Oh boy! :-( I'll have to take them for three days. I don't do well without adequate sleep.
I dread the lifestyle change that chemo will bring and I keep trying to get my mind around it--- the rinsing my mouth serveral times per day with baking soda/salt water to prevent mouth sores, taking my temperature daily at the same time, keeping a log of daily symptoms, avoiding crowded places, worrying about catching something when my blood cell counts bottom out on day nine of each chemo cycle, etc. And, HAIR LOSS. Because I've never had chemo before--- I am expecting the worst and hoping it won't be half as bad as I think it will be. It really freaks me out to think of sitting for two hours while two bags of toxic "stuff" empty into my body. :-( I don't know how I'll react or feel when that time comes on Wednesday, but I'm trying to psych myself up for it--- that I CAN do it. I need a logical grasp on it--- "This will preserve your life!" ; "What would happen if you don't do it?"; "It could be worse."; "This is short term."
What stinks is that my children's "Famiy Share" school snack/picnic is on June 11th--- and that's my "bottom out day" for blood counts. I want to go, but I don't want to get sick from being around all of the little preschoolers.
Okay... I need to remember that GOD will help me through it all!! :-) Why do I keep acting like I have to rely on myself?
Monday, May 31, 2010
Friday, May 28, 2010
The Drain Is GONE!
Yahoo! The drain is gone! Twenty-five days without a REAL shower--- I've come to realize what a luxury a shower is. :-) We had an appointment for the drain to come out on Tuesday, but the drainage had slowed down over the past couple of days so I thought it was worth "running by" the surgeon this morning. He said he could remove it today. I'm extremely GRATEFUL.
Aloysius, my grandbaby, was discharged from the hospital yesterday. His parents from him to visit for about eight hours. He's a sweet little baby. He needed a few things for his homecoming, so Kathryn and I went out shopping last night to buy some essentials (i.e. bassinett sheets, bottles). I'm still old fashioned about baby care and washed the bottles and boiled (sterilized) them. By the time I'd finished helping with Aloysius (we gave him his first "home" bath, too), his mommy's laundry and shopping, I was TIRED! We watched a movie with Tyler and Kanaho late and then went to bed after 11 PM.
I'm very very thankful to a friend and her family for providing a meal for us last night. It turned out to be a very busy day and I'd have found it difficult to cook for everyone.
This morning, I got that last minute appt. to have the drain removed and then rushed to Kanaho's and Ty's apartment to pick up mommy and baby. We went to his first check-up at the pediatrician's. It took some time, as there was a "mountain" of paperwork to fill out as well as the exam. Aloysius did GREAT. He's a sweet baby--- easy going.
Afterward, we went to his Daddy's work place so he could be introduced to management. We had some lunch and then tired Grandma went home to her own house full of little ones at 3 PM. We had plans to take the kids to an amusement park four hours from home tomorrow and spend the night at a hotel, but I'm way too tired to even think about packing up the five of us. And, I spent my hotel money on baby necessaties for Aloysius.
I'd wanted to get away because due to chemo--- I feel like this weekend is the beginning AND the end of my summer. After Wednesday, I'm going to be under the control of the effects of chemo--- stay away from germy places, crowded places, maybe be sick and/or tired--- lose my hair (which will make me want to stay home)... so I'm kind of bumming and sad tonight. I was really looking forward to going away and letting the kids play at the hotel pool, etc. I'm "working through" my disappointment, emotionally.
We're going to try and make a day trip to a zoo three hours away one day this weekend. That's our alternative plan now, and that'll be expensive enough during this time. I just want my kids to have a good summer. I don't want to cancel everything due to my sickness.
Aloysius, my grandbaby, was discharged from the hospital yesterday. His parents from him to visit for about eight hours. He's a sweet little baby. He needed a few things for his homecoming, so Kathryn and I went out shopping last night to buy some essentials (i.e. bassinett sheets, bottles). I'm still old fashioned about baby care and washed the bottles and boiled (sterilized) them. By the time I'd finished helping with Aloysius (we gave him his first "home" bath, too), his mommy's laundry and shopping, I was TIRED! We watched a movie with Tyler and Kanaho late and then went to bed after 11 PM.
I'm very very thankful to a friend and her family for providing a meal for us last night. It turned out to be a very busy day and I'd have found it difficult to cook for everyone.
This morning, I got that last minute appt. to have the drain removed and then rushed to Kanaho's and Ty's apartment to pick up mommy and baby. We went to his first check-up at the pediatrician's. It took some time, as there was a "mountain" of paperwork to fill out as well as the exam. Aloysius did GREAT. He's a sweet baby--- easy going.
Afterward, we went to his Daddy's work place so he could be introduced to management. We had some lunch and then tired Grandma went home to her own house full of little ones at 3 PM. We had plans to take the kids to an amusement park four hours from home tomorrow and spend the night at a hotel, but I'm way too tired to even think about packing up the five of us. And, I spent my hotel money on baby necessaties for Aloysius.
I'd wanted to get away because due to chemo--- I feel like this weekend is the beginning AND the end of my summer. After Wednesday, I'm going to be under the control of the effects of chemo--- stay away from germy places, crowded places, maybe be sick and/or tired--- lose my hair (which will make me want to stay home)... so I'm kind of bumming and sad tonight. I was really looking forward to going away and letting the kids play at the hotel pool, etc. I'm "working through" my disappointment, emotionally.
We're going to try and make a day trip to a zoo three hours away one day this weekend. That's our alternative plan now, and that'll be expensive enough during this time. I just want my kids to have a good summer. I don't want to cancel everything due to my sickness.
Tuesday, May 25, 2010
Today's Oncology Appointment
We went to the cancer treatment facility today not knowing if chemo would be started, but suspecting it wouldn't be due to my still having the drain in place.
We had to go to the laboratory to have blood drawn (to check my blood cell counts) before meeting with the doctor. It was the first time for using my port-a-cath --- which I had surgically implanted yestserday.
The medical assistant who unsuccessfully tried to draw blood from my port really caused me a great deal of discomfort, and that was on top of the nervousness I felt. I'd look over at Stephen at times and just say "Stephen!" It was just very uncomfortable--- it hurt. After a while, the M.A. decided to let a nurse upstairs (at my appointment) look at the situation. Meanwhile, a lab. worker came in and drew the blood from my arm.
Skipping ahead a bit, the nurse upstairs successfully drew the blood from the port. The problem was that the port needed to be adjusted and the M.A. had put the needle in the wrong position. The nurse had to press hard to push the port into place and man...did that ever hurt!
The oncologist had some good news and bad news. The bad news was that we needed to delay chemo for another week or so due to my drain still being in use. The surgeon had emailed her in the morning to tell her he'll remove my drain next Tuesday, June 1st.
The good news is that the nearly $4000 genetic test done on my tumor came back with a relatively low score: 15 The scores run from 0 to 100. If I had been "nodes negative", I'd not even have needed chemo, based on this testing. But, since I have had two positive nodes, it'd be wise to have chemo.
The up side of this is that I'm going to have TWO chemo drugs rather than THREE, and my treatment will last for about three months rather than five. AND, we were able to eliminate a very potent drug which can cause long term problems such as heart disease and leukemia.
I'll have four chemo cycles spaced apart by three weeks. IF I tolerate them well and would like to add another two cycles (for a total of six) for extra insurance, I can do so. I've tentatively scheduled the start of my chemotherapy treatments for June 2nd.
I'll still experience complete hair loss, and can have side effects such as numbness and tingling in my fingertips and feet, nausea, mouth sores, etc. Lots of unpleasant things, but I'll take all of the precautions against them that I possibly can (such as rinsing my mouth several times per day with baking soda and salt warm water.)
The news was quite encouraging. We were both relieved that chemo didn't start today. Stephen had said on the way to the facility that he'd be disappointed if it did start. We're just not ready!!
We hope we can find the means to sneak away for this coming weekend...one more time... to go to a fun place for the kids where germs abound (i.e. the zoo or an amusement park). Once chemo starts, I'll have to avoid those types of places.
Today, I potted some flowers like I do every spring. I wanted to do it before chemo, as I undersetand that gardening is a "no no" while going through treatment. Lots to think about--- so many considerations.
Yesterday's surgery went well, although I was very very sore for the entire day. I went to bed early and woke up less sore. :-) Tylenol helps!
I'm so glad surgery is overwith for now, because I don't think I could stand to go into the hospital for one more procedure... I am SO SICK of operations!!
I'm so anxious for this drainage to stop. It's been a real pain to take sponge baths for three weeks! I have to do it in three parts and it takes forever, it seems. And, in this hot, sticky weather, a real shower sounds good!! But, at least we have running water and soap to be thankful for.
Speaking of thankfulness, our pediatrician surprised us again this evening with a homecooked meal. He made meatloaf and a chilled vegetable soup, as well as some broccoli. We'll have that tomorrow eveing, as we had already fired up the grill to cook cheeseburgers on this insanely hot day! :-)
Other tidbits--- the wig's on hold. It is "perfect" as far as color and style go. I look like "me" in it. But, insurance won't cover it,, because I'd not be buying it from a medical facility that is "in network". :-( I looked through a catalog of wigs at the cancer facility's pharmacy and none of them come even close to being in my style or color, yet insurance would cover those ones. I don't know whether to go ahead and charge this wig on my card, or to forgo it and just use the caps and scarves with the bangs that I've ordered. People tell me that the wigs are too hot to wear in the summer-time, and even anytime of the year while going through chemo (hot flashes, sensitive scalp, etc.)
Company's coming--- nuff blogging for tonight.
We had to go to the laboratory to have blood drawn (to check my blood cell counts) before meeting with the doctor. It was the first time for using my port-a-cath --- which I had surgically implanted yestserday.
The medical assistant who unsuccessfully tried to draw blood from my port really caused me a great deal of discomfort, and that was on top of the nervousness I felt. I'd look over at Stephen at times and just say "Stephen!" It was just very uncomfortable--- it hurt. After a while, the M.A. decided to let a nurse upstairs (at my appointment) look at the situation. Meanwhile, a lab. worker came in and drew the blood from my arm.
Skipping ahead a bit, the nurse upstairs successfully drew the blood from the port. The problem was that the port needed to be adjusted and the M.A. had put the needle in the wrong position. The nurse had to press hard to push the port into place and man...did that ever hurt!
The oncologist had some good news and bad news. The bad news was that we needed to delay chemo for another week or so due to my drain still being in use. The surgeon had emailed her in the morning to tell her he'll remove my drain next Tuesday, June 1st.
The good news is that the nearly $4000 genetic test done on my tumor came back with a relatively low score: 15 The scores run from 0 to 100. If I had been "nodes negative", I'd not even have needed chemo, based on this testing. But, since I have had two positive nodes, it'd be wise to have chemo.
The up side of this is that I'm going to have TWO chemo drugs rather than THREE, and my treatment will last for about three months rather than five. AND, we were able to eliminate a very potent drug which can cause long term problems such as heart disease and leukemia.
I'll have four chemo cycles spaced apart by three weeks. IF I tolerate them well and would like to add another two cycles (for a total of six) for extra insurance, I can do so. I've tentatively scheduled the start of my chemotherapy treatments for June 2nd.
I'll still experience complete hair loss, and can have side effects such as numbness and tingling in my fingertips and feet, nausea, mouth sores, etc. Lots of unpleasant things, but I'll take all of the precautions against them that I possibly can (such as rinsing my mouth several times per day with baking soda and salt warm water.)
The news was quite encouraging. We were both relieved that chemo didn't start today. Stephen had said on the way to the facility that he'd be disappointed if it did start. We're just not ready!!
We hope we can find the means to sneak away for this coming weekend...one more time... to go to a fun place for the kids where germs abound (i.e. the zoo or an amusement park). Once chemo starts, I'll have to avoid those types of places.
Today, I potted some flowers like I do every spring. I wanted to do it before chemo, as I undersetand that gardening is a "no no" while going through treatment. Lots to think about--- so many considerations.
Yesterday's surgery went well, although I was very very sore for the entire day. I went to bed early and woke up less sore. :-) Tylenol helps!
I'm so glad surgery is overwith for now, because I don't think I could stand to go into the hospital for one more procedure... I am SO SICK of operations!!
I'm so anxious for this drainage to stop. It's been a real pain to take sponge baths for three weeks! I have to do it in three parts and it takes forever, it seems. And, in this hot, sticky weather, a real shower sounds good!! But, at least we have running water and soap to be thankful for.
Speaking of thankfulness, our pediatrician surprised us again this evening with a homecooked meal. He made meatloaf and a chilled vegetable soup, as well as some broccoli. We'll have that tomorrow eveing, as we had already fired up the grill to cook cheeseburgers on this insanely hot day! :-)
Other tidbits--- the wig's on hold. It is "perfect" as far as color and style go. I look like "me" in it. But, insurance won't cover it,, because I'd not be buying it from a medical facility that is "in network". :-( I looked through a catalog of wigs at the cancer facility's pharmacy and none of them come even close to being in my style or color, yet insurance would cover those ones. I don't know whether to go ahead and charge this wig on my card, or to forgo it and just use the caps and scarves with the bangs that I've ordered. People tell me that the wigs are too hot to wear in the summer-time, and even anytime of the year while going through chemo (hot flashes, sensitive scalp, etc.)
Company's coming--- nuff blogging for tonight.
Monday, May 24, 2010
We Ran Away!
We HAD to get away. I had to get away. So, we ran away this weekend--- Stephen, Kaylee, the little ones and I. Oh I am SO GLAD we did!
We went to a hotel with a heated pool. The kids really enjoyed swimming (with their life jackets on, of course). I wasn't able to get in the pool with them because I still have a JP drain (bummer!), but Stephen and Kaylee played with them. Little Stephen learned how to do the dog paddle and loved swimming around by himself a bit. Even Kathryn was crazy about the water. :-) Sam's quite proud that he can inflate a beach ball by himself. :-)
We also went to a buffet restaurant, because I wanted to be able to eat at a place like that one more time before starting chemotherapy. Once that begins, I can't eat a a salad bar type place.
The kids loved Chuck E. Cheese. :-) That is their favorite place. They like it better than Disney World. :-) Little Stephen learned how to do skee bowling and was racking up quite a string of tickets from his bowling lane. Sadly, someone stole them before he was finished with the game. He felt so bad, and Mama was MAD! :-/ GRRRR. But, God blessed him with lots of "floating tickets" that a worker threw into the air a couple of times. He got back more than he'd lost. :-)
We went shopping at a store that has a bunch of seasonal things --- what they offer depends on the time of the year. And, we also got sandwiches at one of our favorite little places in that city. Before coming home, we visited some African friends who'd moved from this area a couple of years ago. It was good to see them.
This morning I had port-a-cath surgery. I so dreaded it--- ANOTHER procedure, ANOTHER IV, ANOTHER medical appointment, ANOTHER experience with getting picked and prodded... it's getting "old", and it's far from over. At least my veins will get a break for the next half year, because everything can be done with the port: blood draws, chemo injections, etc.
The emotional aspect of having a port in place is now that I know it's there, chemo is so REAL to me--- it IS going to happen. It's not a bad dream. I DO have cancer. I have to swallow this realization over and over and over again---and it sometimes feels like I'm choking on food that someone is force feeding me with.
We met with a social worker at the cancer facility on Friday. She alluded to the idea that the news of my diagnosis is still "new" and that maybe I'm still coming to terms with it. Yep! She's right on the money. I absolutely cannot stand the fact that I have cancer, and I only allow myself to sink a little bit low over it most of the time before I come back up and get ready to fight again. I do not want to go too "low". I refuse to go there. I'm afraid if I go there, I won't be able to get back on top of this. I just keep going through the motions. If they tell me I need surgery, I get surgery. My feet take me to the hospital. If they tell me I need a check-up, I follow my feet to the doctor's office. I just keep going...
Onto a different topic that cancer patients face--- the things people say. There's a local woman that I buy small things from (beauty products). It's gotten so I dread talking with her each week, because she's just so off the mark with what's appropriate to say. I always feel like she's waiting for me to say I'm dying. It's unreal! Today, she called and said "You had ANOTHER surgery?" I explained that I'd had a port put in. She said "YOU STILL HAVE CANCER IN YOU?" I tried to educate her about the fact that even if the cancer's been removed, they still usually treat the whole body with chemotherapy as a precaution (if microscopic cancer cells may have broken away into the bloodstream and traveled throughout the body and "landed" somewhere). I may as well have been talking to the door. Then, she piped up with "ARE YOU GOING TO LOSE YOUR H-A-I-R?" I tried to answer her in a mature way, but i really wanted to tell her she was pretty careless with her questions. I mean, losing our hair is one of the most traumatic experiences for female cancer patients!"
Oh, and then in the recovery room this morning my nurse asked me "So, you're just starting your journey?" I informed her that my journey started two months ago when I had a routine mammogram and found out that I have cancer. I feel like I've already walked through a little corner of hell, so no, this isn't the beginning. This is getting toward the middle.
And, how about getting away this weekend with my family for a "cancer time out" and talking to a relative on the phone who felt the need to tell me about someone they know having brain cancer that's spread to other parts of the body. HELLO! I'm worrying about distant metastises (sp?) right now and someone's telling me about cancer spreading in someone else?
It takes patience. It takes grace. And, I so need God to help me with both. I'm TRYING to remember advice from another lady I know who's had cancer and has survived. She said to remember that most people have good intentions even if they say the wrong thing. :-)
Well, why go "there" after such a nice weekend. :-) I guess it's just interesting the things that people say at times. I'm sure I'm guilty, too, of saying something in an awkward or hurtful way when my intentions were good.
To end this on a postive note--- the weather is beautiful, my children are happy and healthy, my husband is amazing, my grandbaby is doing super and may go home soon, and we just had a really special time away as a family. I have some awesome friends, and the prayers of so many wonderful, dear people. God has blessed me especially during this difficult time in our lives.
We went to a hotel with a heated pool. The kids really enjoyed swimming (with their life jackets on, of course). I wasn't able to get in the pool with them because I still have a JP drain (bummer!), but Stephen and Kaylee played with them. Little Stephen learned how to do the dog paddle and loved swimming around by himself a bit. Even Kathryn was crazy about the water. :-) Sam's quite proud that he can inflate a beach ball by himself. :-)
We also went to a buffet restaurant, because I wanted to be able to eat at a place like that one more time before starting chemotherapy. Once that begins, I can't eat a a salad bar type place.
The kids loved Chuck E. Cheese. :-) That is their favorite place. They like it better than Disney World. :-) Little Stephen learned how to do skee bowling and was racking up quite a string of tickets from his bowling lane. Sadly, someone stole them before he was finished with the game. He felt so bad, and Mama was MAD! :-/ GRRRR. But, God blessed him with lots of "floating tickets" that a worker threw into the air a couple of times. He got back more than he'd lost. :-)
We went shopping at a store that has a bunch of seasonal things --- what they offer depends on the time of the year. And, we also got sandwiches at one of our favorite little places in that city. Before coming home, we visited some African friends who'd moved from this area a couple of years ago. It was good to see them.
This morning I had port-a-cath surgery. I so dreaded it--- ANOTHER procedure, ANOTHER IV, ANOTHER medical appointment, ANOTHER experience with getting picked and prodded... it's getting "old", and it's far from over. At least my veins will get a break for the next half year, because everything can be done with the port: blood draws, chemo injections, etc.
The emotional aspect of having a port in place is now that I know it's there, chemo is so REAL to me--- it IS going to happen. It's not a bad dream. I DO have cancer. I have to swallow this realization over and over and over again---and it sometimes feels like I'm choking on food that someone is force feeding me with.
We met with a social worker at the cancer facility on Friday. She alluded to the idea that the news of my diagnosis is still "new" and that maybe I'm still coming to terms with it. Yep! She's right on the money. I absolutely cannot stand the fact that I have cancer, and I only allow myself to sink a little bit low over it most of the time before I come back up and get ready to fight again. I do not want to go too "low". I refuse to go there. I'm afraid if I go there, I won't be able to get back on top of this. I just keep going through the motions. If they tell me I need surgery, I get surgery. My feet take me to the hospital. If they tell me I need a check-up, I follow my feet to the doctor's office. I just keep going...
Onto a different topic that cancer patients face--- the things people say. There's a local woman that I buy small things from (beauty products). It's gotten so I dread talking with her each week, because she's just so off the mark with what's appropriate to say. I always feel like she's waiting for me to say I'm dying. It's unreal! Today, she called and said "You had ANOTHER surgery?" I explained that I'd had a port put in. She said "YOU STILL HAVE CANCER IN YOU?" I tried to educate her about the fact that even if the cancer's been removed, they still usually treat the whole body with chemotherapy as a precaution (if microscopic cancer cells may have broken away into the bloodstream and traveled throughout the body and "landed" somewhere). I may as well have been talking to the door. Then, she piped up with "ARE YOU GOING TO LOSE YOUR H-A-I-R?" I tried to answer her in a mature way, but i really wanted to tell her she was pretty careless with her questions. I mean, losing our hair is one of the most traumatic experiences for female cancer patients!"
Oh, and then in the recovery room this morning my nurse asked me "So, you're just starting your journey?" I informed her that my journey started two months ago when I had a routine mammogram and found out that I have cancer. I feel like I've already walked through a little corner of hell, so no, this isn't the beginning. This is getting toward the middle.
And, how about getting away this weekend with my family for a "cancer time out" and talking to a relative on the phone who felt the need to tell me about someone they know having brain cancer that's spread to other parts of the body. HELLO! I'm worrying about distant metastises (sp?) right now and someone's telling me about cancer spreading in someone else?
It takes patience. It takes grace. And, I so need God to help me with both. I'm TRYING to remember advice from another lady I know who's had cancer and has survived. She said to remember that most people have good intentions even if they say the wrong thing. :-)
Well, why go "there" after such a nice weekend. :-) I guess it's just interesting the things that people say at times. I'm sure I'm guilty, too, of saying something in an awkward or hurtful way when my intentions were good.
To end this on a postive note--- the weather is beautiful, my children are happy and healthy, my husband is amazing, my grandbaby is doing super and may go home soon, and we just had a really special time away as a family. I have some awesome friends, and the prayers of so many wonderful, dear people. God has blessed me especially during this difficult time in our lives.
Thursday, May 20, 2010
A GOOD DAY
Today was a GOOD day--- so much better than yesterday.
I was able to wake up before the baby and do my time consuming, 3-part bath (no showers yet, due to the drain that I have). It seemed so good to get bathed and dressed EARLIER than usual. It just set the day off on the right foot.
It seemed so good to do laundry myself again---even hung two loads on the line today! :-)
I cooked a frittata for breakfast. Normally, these chores are quite mundane, but having lost the freedom to easily do them for a while, I am GLAD to be "back at 'em."
Stephen and I went to the hospital for my echocardiogram today. My friend works in the cariology department and surpised me with a visit in the waiting room. I really appreciated that so much! I wonder if others realize just what it means to us to receive their kindness. (Mental note to self: do the same for others!) :-)
The technician noticed that it's possible that I may have a PFO. I am blogging this term, because I want to remember that in the future. I didn't want to have a test performed today to determine this for sure, but will want to have it done at a later date. Apparently, before birth we have this flap that is open in our heart. When we're born, it closes. However, 10% of adults have open ones at some point and that means that it's possible for a blood clot to go to the brain. The test is run via IV. Saline and air are put through the IV and if bubbles (the air) pass from one side of the heart to the other, then the flap is open.
After the appointment we went upstairs to visit Aloysius. When we got there, he was gone. :-) He'd been moved to the Continuing Care nursery. This is a graduation of sorts, so it's a good thing. :-) (Our twins went through this graduation process, too.) He has his own little room with two big stuffed chairs, a desk, etc. It's a nice private setting for his mom and dad to spend time with him. He was sleeping and looked so peaceful. He's a beautiful baby. The nurse said he'll be able to have his IV removed soon as he's taking plenty of fluids orally. She said he wakes up on his own and roots around at feeding time. That's pretty amazing for a baby his age and size. He's very alert. Once he gains three more ounces he'll move to an open top crib. :-) Good job, Aloysius!
From there we went to Walmart. We stocked up on my chemo "battle supplies". It's unreal what we have to think about in the coming weeks and months. My white cell count will dramatically drop and I'll be suspectable to catching viruses and having infections. We bought several Lysol products. We also had to get things like non-whitening toothpaste, electric razor, Imodium AD.
We went to Chemo Class yesterday at the hospital and learned about the bad side of having treatment. Chemo destroys any rapidly growing and dividing body cells, both good and bad (like cancer). It can't differentiate between the good and bad cells, so it attacks them all. The good cells in our bodies that grow and divide quickly are:
hair
gastro digestive tract- from the mouth to the rectum
blood cells
Sooo, blood counts drop (red, white and platelets). This means anemia, not enough white cells to fight infection and viruses, and poor clotting.
It's easy to get mouth sores, upset stomach, constipation, fever, illnesses, infection, and of course--- hair loss.
Fun? NOT.
And, the echocardiogram was to give my doctor a baseline for my heart's normal functioning. That is because chemo can cause damage to that aspect of one's body. They'll do another echo. at some point during chemo to see how things are going.
Anyway... after coming home today, we were blessed with a delicious spaghetti dinner. The boys loved the spaghetti so much that they said they hope the "lady" can bring spaghetti every day. :-) It's cool that they're getting to see how kind and thoughtful people are, and that this other family is doing something nice for us because God wants them to. It's a really great lesson for the whole family, and I suspect they feel it is the same for their family.
We did have our cat "put down" last night. It's sad, and it was hard, but Stephen and I feel that we made the best decision we could at that time given the circumstances we're facing right now.
We'll talk with a social worker at the cancer facility tomorrow to get advice on how to talk with our twins about my cancer and treatment, and the changes in our household because of these things.
The oncologist's nurse called today to inform me that if the drain can't come out by Monday, we'll still meet with the cancer doc on Tuesday but chemo will be postponed until June 1st. If the drain comes out, then chemo will start on Tuesday.
Meanwhile, we really want to get away for a break from the medical calls and appointments. We're planning to take the kids to Chuck E. Cheese in Portland on Saturdday.
I was able to wake up before the baby and do my time consuming, 3-part bath (no showers yet, due to the drain that I have). It seemed so good to get bathed and dressed EARLIER than usual. It just set the day off on the right foot.
It seemed so good to do laundry myself again---even hung two loads on the line today! :-)
I cooked a frittata for breakfast. Normally, these chores are quite mundane, but having lost the freedom to easily do them for a while, I am GLAD to be "back at 'em."
Stephen and I went to the hospital for my echocardiogram today. My friend works in the cariology department and surpised me with a visit in the waiting room. I really appreciated that so much! I wonder if others realize just what it means to us to receive their kindness. (Mental note to self: do the same for others!) :-)
The technician noticed that it's possible that I may have a PFO. I am blogging this term, because I want to remember that in the future. I didn't want to have a test performed today to determine this for sure, but will want to have it done at a later date. Apparently, before birth we have this flap that is open in our heart. When we're born, it closes. However, 10% of adults have open ones at some point and that means that it's possible for a blood clot to go to the brain. The test is run via IV. Saline and air are put through the IV and if bubbles (the air) pass from one side of the heart to the other, then the flap is open.
After the appointment we went upstairs to visit Aloysius. When we got there, he was gone. :-) He'd been moved to the Continuing Care nursery. This is a graduation of sorts, so it's a good thing. :-) (Our twins went through this graduation process, too.) He has his own little room with two big stuffed chairs, a desk, etc. It's a nice private setting for his mom and dad to spend time with him. He was sleeping and looked so peaceful. He's a beautiful baby. The nurse said he'll be able to have his IV removed soon as he's taking plenty of fluids orally. She said he wakes up on his own and roots around at feeding time. That's pretty amazing for a baby his age and size. He's very alert. Once he gains three more ounces he'll move to an open top crib. :-) Good job, Aloysius!
From there we went to Walmart. We stocked up on my chemo "battle supplies". It's unreal what we have to think about in the coming weeks and months. My white cell count will dramatically drop and I'll be suspectable to catching viruses and having infections. We bought several Lysol products. We also had to get things like non-whitening toothpaste, electric razor, Imodium AD.
We went to Chemo Class yesterday at the hospital and learned about the bad side of having treatment. Chemo destroys any rapidly growing and dividing body cells, both good and bad (like cancer). It can't differentiate between the good and bad cells, so it attacks them all. The good cells in our bodies that grow and divide quickly are:
hair
gastro digestive tract- from the mouth to the rectum
blood cells
Sooo, blood counts drop (red, white and platelets). This means anemia, not enough white cells to fight infection and viruses, and poor clotting.
It's easy to get mouth sores, upset stomach, constipation, fever, illnesses, infection, and of course--- hair loss.
Fun? NOT.
And, the echocardiogram was to give my doctor a baseline for my heart's normal functioning. That is because chemo can cause damage to that aspect of one's body. They'll do another echo. at some point during chemo to see how things are going.
Anyway... after coming home today, we were blessed with a delicious spaghetti dinner. The boys loved the spaghetti so much that they said they hope the "lady" can bring spaghetti every day. :-) It's cool that they're getting to see how kind and thoughtful people are, and that this other family is doing something nice for us because God wants them to. It's a really great lesson for the whole family, and I suspect they feel it is the same for their family.
We did have our cat "put down" last night. It's sad, and it was hard, but Stephen and I feel that we made the best decision we could at that time given the circumstances we're facing right now.
We'll talk with a social worker at the cancer facility tomorrow to get advice on how to talk with our twins about my cancer and treatment, and the changes in our household because of these things.
The oncologist's nurse called today to inform me that if the drain can't come out by Monday, we'll still meet with the cancer doc on Tuesday but chemo will be postponed until June 1st. If the drain comes out, then chemo will start on Tuesday.
Meanwhile, we really want to get away for a break from the medical calls and appointments. We're planning to take the kids to Chuck E. Cheese in Portland on Saturdday.
Wednesday, May 19, 2010
The Straw That Broke the Camel's Back
These nearly daily medical calls and appointments are getting to feel like "too much". Those things combined with the hassle and discomfort of having a drain for over two weeks, the stress of knowing what's coming (chemo and another surgery) next week, and just being plain tired and frustrated from trying so stinking hard to get a sense of normal by doing household things and kid care--- it's PILING UP.
And, now, for "the straw that broke the camel's back" today--- our oldest (of two) cats is very sick. He has rancid smelling diahhrea (sp?) and vomit, and he's laying around in a way that tells us something is wrong. I think he looks a bit "guant". I do NOT feel I can cope with this on top of everything else.
I've TRIED. I called the vet's today to tell them that he's sick. The ONLY opening they have today is for when I'm scheduled for my chemotherapy class. The vet's suggested we could drop our cat off for the day and they'll do the necessary tests and exams while we're not able to be there. THAT "daycare charge" would be $56!
And, the total cost of hospitalization and care would be $396. THAT is just to keep him there today and diagnose his problem, as well as run an IV line!
We have CRIED because this is just one more stress--one too many. It is just TOO MUCH. We asked if there's a rescue mission that would take him. We asked how much it would cost to put him down I cried on the phone (embarrassed now) and explained that I CANNOT have a sick cat in the house while going through chemo --- low blood cell count-germs--not good.
They offer nothing in return for accomodation--- meanwhile, Smokey has vomitted again and it was RANCID smelling. I think we have no choice but to put this cat down. I CANNOT cope with caring for a sick cat, finding MORE appointment time to squeeze into our lives to deal with a sick cat, and I certainly can't stomach the idea of his germs while fighting my own health battle.
He's had a good life and a good home. I just cannot deal with his sickness right now.
And, now, for "the straw that broke the camel's back" today--- our oldest (of two) cats is very sick. He has rancid smelling diahhrea (sp?) and vomit, and he's laying around in a way that tells us something is wrong. I think he looks a bit "guant". I do NOT feel I can cope with this on top of everything else.
I've TRIED. I called the vet's today to tell them that he's sick. The ONLY opening they have today is for when I'm scheduled for my chemotherapy class. The vet's suggested we could drop our cat off for the day and they'll do the necessary tests and exams while we're not able to be there. THAT "daycare charge" would be $56!
And, the total cost of hospitalization and care would be $396. THAT is just to keep him there today and diagnose his problem, as well as run an IV line!
We have CRIED because this is just one more stress--one too many. It is just TOO MUCH. We asked if there's a rescue mission that would take him. We asked how much it would cost to put him down I cried on the phone (embarrassed now) and explained that I CANNOT have a sick cat in the house while going through chemo --- low blood cell count-germs--not good.
They offer nothing in return for accomodation--- meanwhile, Smokey has vomitted again and it was RANCID smelling. I think we have no choice but to put this cat down. I CANNOT cope with caring for a sick cat, finding MORE appointment time to squeeze into our lives to deal with a sick cat, and I certainly can't stomach the idea of his germs while fighting my own health battle.
He's had a good life and a good home. I just cannot deal with his sickness right now.
Monday, May 17, 2010
UPDATE
We've had so many medical phone calls and appointments that we were thankful for a quiet weekend away from those things. However, I caught the stomach bug that my three little ones have taken turns getting.
My echocardiogram and port surgery scheduled for today have been postponed due to my stomach virus, and I feel that this is a blessing in disguise. Things have been happening so fast that the surgery would have been "too much too soon" for me.
The echocardiogram has been rescheduled for the 2oth and the port surgery for the 24th. Chemo will begin on May 25th.
We have a lot of appointments lined up for this week. The good news is that my incisions are healing and I'm feeling I can do a bit more physically. I made beds thi morning without a lot of discomfort.
Right now, we're trying to work out the in's and out's of who's taking leave from work when and who's doing what in our home. We could use some prayer in sorting all of this out.
I had a couple of really disturbing dreams last night that I think symbolize just how emotional having cancer can be.
In my overall dream, my husband and I were struggling to get home from Boston by car and by foot. We encountered numerous challenges along the way. In different parts of that journey, some of my kids would become involved. At one point, it was just Kathryn (my baby) and I walking along and we came across an ampitheater (Sp?) The center had beautiful green grass and Jesus was standing in the center in a white robe. I grabbed Kathryn's hand (she was older in my dream- about three) and told her to RUN with me. We were running and running and Jesus was chasing us. Eventually, he let me go. HOW WEIRD that dream was, but I know that it was from my strong desire to be allowed to live long enough to raise the three little ones--- to see my baby through til adulthood. I don't want to leave them yet, as wonderful as it would be to go home to heaven and leave this world behind.
The dream continued and my oldest son entered in at some point. He, my husband and I were stranded somewhere between Boston and home and we couldn't find a place to sleep. We stayed in a water treatment facility, sleeping on the floor. As if my son (now 24) were young again, I walked with him to a gift shop and offered to buy gingerbread cookies and candy for him. I was "taking care of him".
Then, at some point, we were home and my oldest daughter (20) wanted to go to a beach that is close to her grandparents' town. She wanted to go sooo badly, so I took her there and brought my baby girl along. I waded into the water with Kathryn and noticed that lots of little girls had lost their footing where the bottom of the ocean dropped off and had drowned. It was gross--- little girls were all over the bottom of the ocean. I was desperately trying to carry Kathryn and swim to shore, to save her.
Again, it's all about not wanting my cancer to take me away from caring for my children. It's very painful and emotional to think about the possibility of dying and leaving behind my children. Prayers for peace would be helpful. :-)
My echocardiogram and port surgery scheduled for today have been postponed due to my stomach virus, and I feel that this is a blessing in disguise. Things have been happening so fast that the surgery would have been "too much too soon" for me.
The echocardiogram has been rescheduled for the 2oth and the port surgery for the 24th. Chemo will begin on May 25th.
We have a lot of appointments lined up for this week. The good news is that my incisions are healing and I'm feeling I can do a bit more physically. I made beds thi morning without a lot of discomfort.
Right now, we're trying to work out the in's and out's of who's taking leave from work when and who's doing what in our home. We could use some prayer in sorting all of this out.
I had a couple of really disturbing dreams last night that I think symbolize just how emotional having cancer can be.
In my overall dream, my husband and I were struggling to get home from Boston by car and by foot. We encountered numerous challenges along the way. In different parts of that journey, some of my kids would become involved. At one point, it was just Kathryn (my baby) and I walking along and we came across an ampitheater (Sp?) The center had beautiful green grass and Jesus was standing in the center in a white robe. I grabbed Kathryn's hand (she was older in my dream- about three) and told her to RUN with me. We were running and running and Jesus was chasing us. Eventually, he let me go. HOW WEIRD that dream was, but I know that it was from my strong desire to be allowed to live long enough to raise the three little ones--- to see my baby through til adulthood. I don't want to leave them yet, as wonderful as it would be to go home to heaven and leave this world behind.
The dream continued and my oldest son entered in at some point. He, my husband and I were stranded somewhere between Boston and home and we couldn't find a place to sleep. We stayed in a water treatment facility, sleeping on the floor. As if my son (now 24) were young again, I walked with him to a gift shop and offered to buy gingerbread cookies and candy for him. I was "taking care of him".
Then, at some point, we were home and my oldest daughter (20) wanted to go to a beach that is close to her grandparents' town. She wanted to go sooo badly, so I took her there and brought my baby girl along. I waded into the water with Kathryn and noticed that lots of little girls had lost their footing where the bottom of the ocean dropped off and had drowned. It was gross--- little girls were all over the bottom of the ocean. I was desperately trying to carry Kathryn and swim to shore, to save her.
Again, it's all about not wanting my cancer to take me away from caring for my children. It's very painful and emotional to think about the possibility of dying and leaving behind my children. Prayers for peace would be helpful. :-)
Thursday, May 13, 2010
NORMAL day! Yahoo!
Thank you, Lord, for a "normal" day! It seemed so good to spend the afternoon with my husband doing stuff we always used to do before the cancer diagnosis and surgeries and gazillion medical appointments!
I was so happy being out with Stephen and enjoying life together--- but it was bittersweet, because occasionally I'd think about how I want to LIVE and be able to be with him for a LONG time. I sooo hope and pray God allows me to be cured.
We FINALLY got to go shopping for the grandbaby --- it was hard waiting for 1 1/2 weeks after his birth.
We went to some stores--- found an amazing buy on winter boots for the twins for next year--- $2.00 on clearance!
My hair stylist was able to squeeze me in for a cut today---my last one before chemotherapy. I asked her to cut it short so I could transition more easily from long hair to no hair. It's in a cute little short bob that graduates in length from the back to the front.
And, after calling a lady this morning about wig stuff and feeling kind of bummed at her inability to help me, we found an "angel" to help us! We had noticed a couple of months ago that a local salon advertised wigs. Stephen went in with me today to inquire about them. The lady who sells them has 10 years experience with helping cancer patients with their head covering needs. She was just so good to me! We scheduled a time for later that day for me to go back and consult with her. I tried on a wig that's part human hair and mixed fibers. The color is close to mine and the style is one similar to what I've worn before. It's a WIG, but it's also a symbol of dignity when you know you're going to lose your hair! It makes me feel a bit "safe" to know I can have something like that on hand if it's too traumatic to go out with just a cap or scarf.
We were blessed with a delicious meal tonight! THANK YOU, PATTY!!! We appreciate all you've done for us, so much! It was wonderful to come home and sit down together as a family to a hot meal and get refreshed for the busy evening of tending to the kids and house.
Surgeon's appt. tom. at 11:30. We hope to meet up with my best friend from childhood who will be in the hospital at the same time we will. YAY!
Surgery on Monday for the placement of a port for my chemotherapy.
I was so happy being out with Stephen and enjoying life together--- but it was bittersweet, because occasionally I'd think about how I want to LIVE and be able to be with him for a LONG time. I sooo hope and pray God allows me to be cured.
We FINALLY got to go shopping for the grandbaby --- it was hard waiting for 1 1/2 weeks after his birth.
We went to some stores--- found an amazing buy on winter boots for the twins for next year--- $2.00 on clearance!
My hair stylist was able to squeeze me in for a cut today---my last one before chemotherapy. I asked her to cut it short so I could transition more easily from long hair to no hair. It's in a cute little short bob that graduates in length from the back to the front.
And, after calling a lady this morning about wig stuff and feeling kind of bummed at her inability to help me, we found an "angel" to help us! We had noticed a couple of months ago that a local salon advertised wigs. Stephen went in with me today to inquire about them. The lady who sells them has 10 years experience with helping cancer patients with their head covering needs. She was just so good to me! We scheduled a time for later that day for me to go back and consult with her. I tried on a wig that's part human hair and mixed fibers. The color is close to mine and the style is one similar to what I've worn before. It's a WIG, but it's also a symbol of dignity when you know you're going to lose your hair! It makes me feel a bit "safe" to know I can have something like that on hand if it's too traumatic to go out with just a cap or scarf.
We were blessed with a delicious meal tonight! THANK YOU, PATTY!!! We appreciate all you've done for us, so much! It was wonderful to come home and sit down together as a family to a hot meal and get refreshed for the busy evening of tending to the kids and house.
Surgeon's appt. tom. at 11:30. We hope to meet up with my best friend from childhood who will be in the hospital at the same time we will. YAY!
Surgery on Monday for the placement of a port for my chemotherapy.
Wednesday, May 12, 2010
Appointment with Oncologist
A very rough road awaits us... my family... me. We met with the oncologist and learned of my treatment plan today.
My tumor size is now considered greater than 1.8 cm because of the non-invasive cancer that pushed to the margins... now it's considered to an ADDITIONAL 1 mm in size. I'm still considered to have stage 2B cancer.
The nodes involvement puts me in a catagory warranting an AGGRESSIVE chemotherapy treatment plan.
For the first EIGHT weeks I'll have FOUR cycles of TWO chemotherapy drugs. This means I'll have two drugs via IV bi-weekly for eight weeks. It's going to "stink". I'm going to feel sick. The side effects are lousy. I'll have anti-nausea medicine to help combat that side effect, but there are others---- low blood cell count---bad stuff.
The day AFTER each chemo treatment I'll go back for a shot of medication that is designed to boost my white cell count.
After the first eight weeks of chemo, I'll begin a THIRD chemotherapy drug which will be injected WEEKLY for TWELVE weeks. This is a less harsh drug and will not cause as much nausea and will not cause such a drop in blood cell count.
I will experience COMPLETE HAIR LOSS for the five months, and then it will slowly grow back after the treatments stop. To this, I can only toss my hands in the air and scream, and then accept it. I hope to find head coverings that will make me feel like I still look like a woman.
AFTER the five complete months of chemo, I will then need a THIRD breast surgery--- either have more tissue removed, or have a mastectomy. If I have more tissue removed, I will then have SIX WEEKS of RADIATION treatments. If I have a mastectomy, I'll have a cruddy recovery and then plastic surgery to reconstruct the breast.
Once THIS stuff is out of the way, I'll be on hormone drug treatment for the following 5-10 years of my life--- another tool to combat breast cancer. I'll take one type of drug pre-menopause and then a different one after menopause. The chemo will likely put me through menopause. To this, I thank God that I was able to have Kathryn and the twins BEFORE finding out about this cancer. Had I found out earlier on, maybe it'd have not spread to my nodes, but I wouldn't have been able to have my babies.
It's VERY hard to have this cancer and treatment mess to deal with while having such busy young children, but I guess it's good they're young--- so they won't remember their mother having been sick. The boys may have vague memories, but Kathryn won't remember at all. And, THANK GOD for Kaylee's being home from college right now. I'm hoping that between her, Stephen and I, and Tyler and Kanaho (when possible), we can keep the kids feeling secure and having a sense of normalcy through this whole ordeal. They're not old enough to resent me for being sick. I think that if they were 10 or so, they'd resent that Mom is sick and can't do much fun stuff.
I am concerned that my elderly parents will be able to hold up under this. I hope the stress won't put them behind health-wise. I only want them to visit me on the "good days" during treament as to not see me on the sick days. The sick days will most likely be the first three days of the chemo cycle each time.
Well, so much to think about.
I'll attend "chemo class" on Monday to learn about the in's and out's of that.
On Friday (this week), I'll see the surgeon for him to check my healing and drain. He'll set up surgery for next week for me to get a chemo port inserted in my chest.
In two weeks, I'll see my oncologist again for her to check my healing and set up a start date for chemotherapy.
God, help us! It's been a HARD thing to swallow and it was very hard to go through the motions at the oncologist's today. I feel like my feet keep taking me to these appiontments and surgeries and my body just follows in obedience. Otherwise, it's just surreal. I stood in the cancer facility today at one of the little treatment rooms and asked Stephen "Are we REALLY HERE?"
I couldn't get out of bed this morning before crying and praying to God-- asking for Him to help Stephen and I. I really feel I can't do this in my own strength. It is a HUGE overload.
On a side note, little Aloysius is doing well. He's gained some weight and his ultrasounds results are good. His parents are having some real financial burdens at the moment which I feel so sorry about. I wish I could help them, but God knows their needs. At least we have that little baby to bring us all some joy amidst hard times. :0) A gift from God.
My tumor size is now considered greater than 1.8 cm because of the non-invasive cancer that pushed to the margins... now it's considered to an ADDITIONAL 1 mm in size. I'm still considered to have stage 2B cancer.
The nodes involvement puts me in a catagory warranting an AGGRESSIVE chemotherapy treatment plan.
For the first EIGHT weeks I'll have FOUR cycles of TWO chemotherapy drugs. This means I'll have two drugs via IV bi-weekly for eight weeks. It's going to "stink". I'm going to feel sick. The side effects are lousy. I'll have anti-nausea medicine to help combat that side effect, but there are others---- low blood cell count---bad stuff.
The day AFTER each chemo treatment I'll go back for a shot of medication that is designed to boost my white cell count.
After the first eight weeks of chemo, I'll begin a THIRD chemotherapy drug which will be injected WEEKLY for TWELVE weeks. This is a less harsh drug and will not cause as much nausea and will not cause such a drop in blood cell count.
I will experience COMPLETE HAIR LOSS for the five months, and then it will slowly grow back after the treatments stop. To this, I can only toss my hands in the air and scream, and then accept it. I hope to find head coverings that will make me feel like I still look like a woman.
AFTER the five complete months of chemo, I will then need a THIRD breast surgery--- either have more tissue removed, or have a mastectomy. If I have more tissue removed, I will then have SIX WEEKS of RADIATION treatments. If I have a mastectomy, I'll have a cruddy recovery and then plastic surgery to reconstruct the breast.
Once THIS stuff is out of the way, I'll be on hormone drug treatment for the following 5-10 years of my life--- another tool to combat breast cancer. I'll take one type of drug pre-menopause and then a different one after menopause. The chemo will likely put me through menopause. To this, I thank God that I was able to have Kathryn and the twins BEFORE finding out about this cancer. Had I found out earlier on, maybe it'd have not spread to my nodes, but I wouldn't have been able to have my babies.
It's VERY hard to have this cancer and treatment mess to deal with while having such busy young children, but I guess it's good they're young--- so they won't remember their mother having been sick. The boys may have vague memories, but Kathryn won't remember at all. And, THANK GOD for Kaylee's being home from college right now. I'm hoping that between her, Stephen and I, and Tyler and Kanaho (when possible), we can keep the kids feeling secure and having a sense of normalcy through this whole ordeal. They're not old enough to resent me for being sick. I think that if they were 10 or so, they'd resent that Mom is sick and can't do much fun stuff.
I am concerned that my elderly parents will be able to hold up under this. I hope the stress won't put them behind health-wise. I only want them to visit me on the "good days" during treament as to not see me on the sick days. The sick days will most likely be the first three days of the chemo cycle each time.
Well, so much to think about.
I'll attend "chemo class" on Monday to learn about the in's and out's of that.
On Friday (this week), I'll see the surgeon for him to check my healing and drain. He'll set up surgery for next week for me to get a chemo port inserted in my chest.
In two weeks, I'll see my oncologist again for her to check my healing and set up a start date for chemotherapy.
God, help us! It's been a HARD thing to swallow and it was very hard to go through the motions at the oncologist's today. I feel like my feet keep taking me to these appiontments and surgeries and my body just follows in obedience. Otherwise, it's just surreal. I stood in the cancer facility today at one of the little treatment rooms and asked Stephen "Are we REALLY HERE?"
I couldn't get out of bed this morning before crying and praying to God-- asking for Him to help Stephen and I. I really feel I can't do this in my own strength. It is a HUGE overload.
On a side note, little Aloysius is doing well. He's gained some weight and his ultrasounds results are good. His parents are having some real financial burdens at the moment which I feel so sorry about. I wish I could help them, but God knows their needs. At least we have that little baby to bring us all some joy amidst hard times. :0) A gift from God.
Tuesday, May 11, 2010
Appointment with Surgeon Today
Stephen and I met with the surgeon today. The healing looks good so far. (Thank you, Lord!) He decided to leave the drain in at least until Friday because it's doing a good job. As inconvenient and uncomfortable as it is to have it, I am thankful that it's doing what it's supposed to. And, supposedly it promotes quicker healing. So, at least three more days of assisted bathing. I can do it. I can do it. I can do it! :-) As least we have running water and soap, right?
I felt kind of low in spirits--- Stephen, too--- while there today. I think we're just tired out and need rest and a change of pace. It was hard to think of questions for the surgeon until the appointment was coming to a close--- and then, they came pouring into my mind. Someone must have been praying. :-)
I asked him the most obvious question--- WHAT exactly is draining from me? It's mostly lymph fluid and some blood. I suspected lymph as... well, duh... I just had all of the nodes removed. :-) Eventually, the tissue will heal up and dry up.
I also asked him if the cancer that went to the margin went only toward one side of the "cube" of tissue removed. He looked at the pathology report and noted that it went to the superior margin, and it "just touched it". So, there's even a chance that he DID get it all this past time, but to be safe, we'll have to look at a third surgery AFTER chemo. That will mean making a decision between a mastectomy (and reconstruction) or taking more tissue (I'm a good candidate for this, still). Whatever option I'll choose will be a hard one to pick, and I hope that I won't have too much pressure from others when I do decide. It's a personal one, and it should be made with much prayer and knowledge.
A couple of people have suggested either to me or to a family member that they're surprised I didn't have chemo BEFORE the surgeries. I asked the doctor about it today. He said that the standard of care with breast cancer is to get the cancer OUT first and then use drug therapy. If they do the drug treatment first, it's because they've found that the patient's cancer has spread to another part of the body, and in that case, the breast would become the lesser priority over treating the rest of the body.
He encouraged me to go to tomorrow's oncology appointment prepared with questions just as if I were a consumer going to purchase something. He gave me an idea of what types of things to ask. I told him that I'm kind of beaten down right now and don't feel I can advocate well for myself, but he thinks I'm doing better than I realize. He said to be honest with the oncologist about that. He feels 100% confident that she is going to put my best interest first and foremost and her treatment suggestion will be designed for ME, and not to satisfy some other incentive.
So, I guess lots of prayer would be good fo me to present my questions well and to press for the answers I'll need.
Okay, I've saved the best for last. Stephen and I visited Aloysius today. Oh, that baby is PRECIOUS! He's one week old today and his skin is beautiful. It's so smooth, and his color is gorgeous. His little lips are perfect. I think he looks a lot like his mommy. She said that he has Tyler's eyes, though. I can't tell, as I've not seen him with his eyes open more than one time. He was tuckered out and sleeping when we were there. He'd had a busy day with some testing and learning how to drink from a bottle, rather than have tube feedings. He's a strong little boy! He successfully took two bottles prior to our visit. Go, Aloysius! That baby already has won my heart... he's a doll!
I felt kind of low in spirits--- Stephen, too--- while there today. I think we're just tired out and need rest and a change of pace. It was hard to think of questions for the surgeon until the appointment was coming to a close--- and then, they came pouring into my mind. Someone must have been praying. :-)
I asked him the most obvious question--- WHAT exactly is draining from me? It's mostly lymph fluid and some blood. I suspected lymph as... well, duh... I just had all of the nodes removed. :-) Eventually, the tissue will heal up and dry up.
I also asked him if the cancer that went to the margin went only toward one side of the "cube" of tissue removed. He looked at the pathology report and noted that it went to the superior margin, and it "just touched it". So, there's even a chance that he DID get it all this past time, but to be safe, we'll have to look at a third surgery AFTER chemo. That will mean making a decision between a mastectomy (and reconstruction) or taking more tissue (I'm a good candidate for this, still). Whatever option I'll choose will be a hard one to pick, and I hope that I won't have too much pressure from others when I do decide. It's a personal one, and it should be made with much prayer and knowledge.
A couple of people have suggested either to me or to a family member that they're surprised I didn't have chemo BEFORE the surgeries. I asked the doctor about it today. He said that the standard of care with breast cancer is to get the cancer OUT first and then use drug therapy. If they do the drug treatment first, it's because they've found that the patient's cancer has spread to another part of the body, and in that case, the breast would become the lesser priority over treating the rest of the body.
He encouraged me to go to tomorrow's oncology appointment prepared with questions just as if I were a consumer going to purchase something. He gave me an idea of what types of things to ask. I told him that I'm kind of beaten down right now and don't feel I can advocate well for myself, but he thinks I'm doing better than I realize. He said to be honest with the oncologist about that. He feels 100% confident that she is going to put my best interest first and foremost and her treatment suggestion will be designed for ME, and not to satisfy some other incentive.
So, I guess lots of prayer would be good fo me to present my questions well and to press for the answers I'll need.
Okay, I've saved the best for last. Stephen and I visited Aloysius today. Oh, that baby is PRECIOUS! He's one week old today and his skin is beautiful. It's so smooth, and his color is gorgeous. His little lips are perfect. I think he looks a lot like his mommy. She said that he has Tyler's eyes, though. I can't tell, as I've not seen him with his eyes open more than one time. He was tuckered out and sleeping when we were there. He'd had a busy day with some testing and learning how to drink from a bottle, rather than have tube feedings. He's a strong little boy! He successfully took two bottles prior to our visit. Go, Aloysius! That baby already has won my heart... he's a doll!
Monday, May 10, 2010
Gratitude
God has really turned this day upside right. :-) He's blessed us with day brightening visits from kind people. We're so overwhelmed with gratitude.
I haven't felt deserving of all of the kindness people have bestowed upon us. I guess I must feel that I have to pass a test of some sort in order to be eligible for receiving love and care from others? Ha! Silly!
I really feel that the love and support of family and friends during a battle with cancer is 50% of what one needs to fight the disease. It's just not something to experience alone.
This morning, my longtime friend stopped by with a few surprises for the kids and my favorite soda. She patiently waited for Kaylee to finish helping me bathe and wash my hair--- which has become quite a process compared to hopping into and out of the shower independently. I feel as though I've not kept up with my friendships very well during the past several years since having three small children, yet my friends have stuck by me. It means a great deal to me. It was nice to talk about old times, and this and that.
And, this evening--- who should show up at our door with a meal in his hand? Our pediatrician! How thoughtful! He'd prepared a gourmet chicken dish which was absolutely delicious! We were so touched by his geunine kindness toward us. And, how funny it was to learn that he used to rent a room in our home years ago---just prior to our purchasing the place.
People have been so good to us. WOW! I hope and pray to be able to do the same for others. People need people.
I haven't felt deserving of all of the kindness people have bestowed upon us. I guess I must feel that I have to pass a test of some sort in order to be eligible for receiving love and care from others? Ha! Silly!
I really feel that the love and support of family and friends during a battle with cancer is 50% of what one needs to fight the disease. It's just not something to experience alone.
This morning, my longtime friend stopped by with a few surprises for the kids and my favorite soda. She patiently waited for Kaylee to finish helping me bathe and wash my hair--- which has become quite a process compared to hopping into and out of the shower independently. I feel as though I've not kept up with my friendships very well during the past several years since having three small children, yet my friends have stuck by me. It means a great deal to me. It was nice to talk about old times, and this and that.
And, this evening--- who should show up at our door with a meal in his hand? Our pediatrician! How thoughtful! He'd prepared a gourmet chicken dish which was absolutely delicious! We were so touched by his geunine kindness toward us. And, how funny it was to learn that he used to rent a room in our home years ago---just prior to our purchasing the place.
People have been so good to us. WOW! I hope and pray to be able to do the same for others. People need people.
Perspective
It's extremely hard for me to watch my husband going non-stop all day long with the care of the kids, household responsibilities and all the other things that must be done in a day--- and I can't help right now. He does so much and never ever complains. If anyone didn't know him well, they'd think he's a super human of some sort simply because he does not stop and doesn't let on how exhausted he is. But, I'm his wife and I KNOW he's tired. I wish so badly that I were back to normal and able to at least take on some of my duties again.
I laid in bed this morning and heard my baby calling from her crib. I wanted very much to go and pick her up, kiss her good morning, change her diaper and start the day. Then, I heard the boys playing downstairs. I would normally be getting their breakfast and starting in on the housework.
I laid in bed and cried. I felt helpless and useless, and completely out of control over my life. I prayed and asked God to help me. I thought of my baby grandson laying in his NICU bed and also relying on the doctors to preserve his life. I felt like Aloysius and grandma are in a similar situation right now. We're dependent on others. And, then I remembered something my cousin shared with me yesterday--- a piece of it alludes to the fact that God is bigger than the doctors. Ultimately, I am in God's hands. Aloysius is in God's hands. I pray that God guides the doctors and gives us all wisdom, and that God brings both Aloysius and I to good health through their skill.
I've had to let go of so much... I can't visit my grandbaby. I can't go shopping for him. I can't take care of Kanaho ---cook and clean fo her while she recovers from surgery. I can't take pictures of my son holding his son. All of these things break my heart. I feel like dreams have been shattered. It's not supposed to be this way. But, it IS this way and I must accept it. And, in this disappointment, I must look for the good. Kanaho is fine and she's strong. Tyler is filled with love for his son and someone is taking pictures. Aloysius has what he needs for now. I can shop in the future. I will see Aloysius tomorrow, God willing, when I go for my own appointment at the hospital. I was able to give Kanaho and Tyler meals yesterday as the church ladies have blessed us with an abundance of food that we are able to share with them. And, if God heals me, I'll be able to spend time with Aloysius in the coming years. No matter what, he will know
Grandma loves him.
In talking with my father this morning, I inquired about a mechanic in his small town who'd recently had a heart attack. I thought about how useless I feel right now and how my limitations are temporary. But, the man we talked about will most likely never be able to work again. How hard that would be for a man who's worked all of his life. So, I think that I have a lot to be thankful for. Someone else ALWAYS has it worse somehow.
In all that I'm feeling and experiencing right now--- this morning I told God it's too much for me. I was also feeling bad about some mean comments someone had made earlier in the week. God reminded me that HIS grace is sufficient for me in all of these things. After that, I felt I could get out of bed and start the day, even with limitations.
I laid in bed this morning and heard my baby calling from her crib. I wanted very much to go and pick her up, kiss her good morning, change her diaper and start the day. Then, I heard the boys playing downstairs. I would normally be getting their breakfast and starting in on the housework.
I laid in bed and cried. I felt helpless and useless, and completely out of control over my life. I prayed and asked God to help me. I thought of my baby grandson laying in his NICU bed and also relying on the doctors to preserve his life. I felt like Aloysius and grandma are in a similar situation right now. We're dependent on others. And, then I remembered something my cousin shared with me yesterday--- a piece of it alludes to the fact that God is bigger than the doctors. Ultimately, I am in God's hands. Aloysius is in God's hands. I pray that God guides the doctors and gives us all wisdom, and that God brings both Aloysius and I to good health through their skill.
I've had to let go of so much... I can't visit my grandbaby. I can't go shopping for him. I can't take care of Kanaho ---cook and clean fo her while she recovers from surgery. I can't take pictures of my son holding his son. All of these things break my heart. I feel like dreams have been shattered. It's not supposed to be this way. But, it IS this way and I must accept it. And, in this disappointment, I must look for the good. Kanaho is fine and she's strong. Tyler is filled with love for his son and someone is taking pictures. Aloysius has what he needs for now. I can shop in the future. I will see Aloysius tomorrow, God willing, when I go for my own appointment at the hospital. I was able to give Kanaho and Tyler meals yesterday as the church ladies have blessed us with an abundance of food that we are able to share with them. And, if God heals me, I'll be able to spend time with Aloysius in the coming years. No matter what, he will know
Grandma loves him.
In talking with my father this morning, I inquired about a mechanic in his small town who'd recently had a heart attack. I thought about how useless I feel right now and how my limitations are temporary. But, the man we talked about will most likely never be able to work again. How hard that would be for a man who's worked all of his life. So, I think that I have a lot to be thankful for. Someone else ALWAYS has it worse somehow.
In all that I'm feeling and experiencing right now--- this morning I told God it's too much for me. I was also feeling bad about some mean comments someone had made earlier in the week. God reminded me that HIS grace is sufficient for me in all of these things. After that, I felt I could get out of bed and start the day, even with limitations.
Saturday, May 8, 2010
Devistating
When I'm asleep ...I don't know I have cancer. Every time I wake-up, I realize it, just like it's news all over again. Last night, Stephen came to bed at 11:00. I was sleeping but the noise of the door opening jolted me awake. I started crying. He asked "Why?" It was because I woke up and felt the pain under my arm and the drain hanging down and realized, once again, that I have cancer.
I feel so physically miserable right now that I cannot imagine going through what's to come. I don't feel I can do it, but know down deep that I have to do it, and I will do it.
Right now, I just want to sleep all of the time. If I go downstairs for a meal with the kids, I come right back upstairs feeling weak and exhausted. And, getting a bath takes everything I've got. I'm down for a couple of hours after bathing. It's very hard to bathe with this drain in place and my arm being out of commission. Someone has to wash my back and my hair and then dry my hair.
I wasn't expecting to feel like this after the second surgery. My blood count was consistently low while in the hospital so I think that this is part of the problem. I'm taking vitamins with iron and trying to eat iron fortified cereal.
I'm worried about Stephen. He's filling the roles of father, mother, and home manager without a break. He's missing both jobs without pay. The consequences of that are going to show up in our faces very soon. But, there's just no way I could take care of the kids and house right now. Kaylee helps what she can when she's not working or sleeping due to her late night job.
I'm thankful that ladies from our church are providing meals, and I can't adequately express how much that means to us. We are not having to worry about tyring to make nutritious hot meals. It would have been hard for Stephen, because he doesn't know how to prepare many American foods, and he's already doing so much in the home and with the kids. I hope and pray I will be cured and that Kaylee and I can join this meals ministry ourselves in the future. It's so helpful.
And, we have some hired cleaning help once per week which is lifting a bit burden right now. She came today and got the weekly basics done.
There are things to be thankful for, for sure.
Otherwise, I have to be honest in saying that right now this recovery and what's to come are more than I can handle. It's "too much". I'm getting by on the prayers of others and in knowing deep inside that God is still there.
I'm completely devistated to have this disease, and to know what's coming. And, how discouraging it is to know that I'll have to have MORE breast surgery in the near future...to know that cancer cells are still there. :-( The invasive cancer is gone, including the positive nodes, but the ductal carcinoma in situ is still invading my breast. :-( If I opt for a mastectomy next time, that will lead to reconstructive surgery... a seeminly never-ending battle with this disease and it's devistation.
I wish I could wake up and it would just all be a bad dream.
I feel so physically miserable right now that I cannot imagine going through what's to come. I don't feel I can do it, but know down deep that I have to do it, and I will do it.
Right now, I just want to sleep all of the time. If I go downstairs for a meal with the kids, I come right back upstairs feeling weak and exhausted. And, getting a bath takes everything I've got. I'm down for a couple of hours after bathing. It's very hard to bathe with this drain in place and my arm being out of commission. Someone has to wash my back and my hair and then dry my hair.
I wasn't expecting to feel like this after the second surgery. My blood count was consistently low while in the hospital so I think that this is part of the problem. I'm taking vitamins with iron and trying to eat iron fortified cereal.
I'm worried about Stephen. He's filling the roles of father, mother, and home manager without a break. He's missing both jobs without pay. The consequences of that are going to show up in our faces very soon. But, there's just no way I could take care of the kids and house right now. Kaylee helps what she can when she's not working or sleeping due to her late night job.
I'm thankful that ladies from our church are providing meals, and I can't adequately express how much that means to us. We are not having to worry about tyring to make nutritious hot meals. It would have been hard for Stephen, because he doesn't know how to prepare many American foods, and he's already doing so much in the home and with the kids. I hope and pray I will be cured and that Kaylee and I can join this meals ministry ourselves in the future. It's so helpful.
And, we have some hired cleaning help once per week which is lifting a bit burden right now. She came today and got the weekly basics done.
There are things to be thankful for, for sure.
Otherwise, I have to be honest in saying that right now this recovery and what's to come are more than I can handle. It's "too much". I'm getting by on the prayers of others and in knowing deep inside that God is still there.
I'm completely devistated to have this disease, and to know what's coming. And, how discouraging it is to know that I'll have to have MORE breast surgery in the near future...to know that cancer cells are still there. :-( The invasive cancer is gone, including the positive nodes, but the ductal carcinoma in situ is still invading my breast. :-( If I opt for a mastectomy next time, that will lead to reconstructive surgery... a seeminly never-ending battle with this disease and it's devistation.
I wish I could wake up and it would just all be a bad dream.
Thursday, May 6, 2010
Post-surgery (again) and Pathology Report
Life sure is full of surprises! Where to begin...
I had my second surgery on Monday, May 3rd. Things went well and I was admitted to the hospital for a night.
The doctor removed all of the remaining nodes on the right side (armpit) and took a wider margin of breast tissue. He inserted a drain and I'll have it for a period of time.
I was released from the hospital at about 1 PM on Tuesday. Shortly after arriving home, I received a phone call from my oldest son announcing that his wife was going to have an emergency c-section that evening. Panic set in. Stephen had to stay home to watch the children. Kaylee's supervisor (her father) didn't feel he could give her the night off from work. I couldn't drive, because I'd just had surgery. I couldn't figure out how to get to the hospital to be available to my son and his wife for the birth of the baby. And, I felt lousy physically. I knew that the only way I could spend the evening at the hospital would be if someone else could take me there and help me with my physical needs. I put a note out on Facebook about the situation
Within a few minutes Ruthie Burke called and said she'd be at our place in 10 minutes. Ruthie can only imagine what a blessing she was to our family that evening. She very unselfishly gave of her time, on short notice, and helped us in one way or another througout the evening---until late at night.
(My parents were on their way to come and help in whatever way they could as well.)
Once we had arrived at the hospital we went to the delivery room that Kanaho was waiting in. We settled in for a bit. Soon after, I began to bleed quite heavily from the site where my drain is sewn in.. It seemed to be soaking through one gauze pad after another and it soiled my shirt. I called Tyler's step-mom and told her to come for the birth and to bring me a clean shirt. I wasn't about to spend the evening there in a bloody shirt. But, Kanaho's nurses urged me to go to the ER and rounded up a wheelchair to escort me there. I went there "kicking and screaming" as I was terribly upset to not be "there" for Tyler and Kanaho. I was heartbroken. :-( I'd just told Kanaho's brother and mother on Skype that I'd take care of Kanaho. And, a few weeks ago, I'd promised Kanaho that I'd join her in the recovery room so she wouldn't be alone. She'd asked me to do that, because she wanted Tyler to go to the NICU nursery with the baby, if he were to come prematurely. It killed me to not be able to follow through on that commitment, and I worried about her.
The ER staff tried to process me quickly so I could get upstairs to see Kanaho and the baby. I arrived up there AFTER the birth and AFTER Kanaho had been taken to her hospital room. It was so disappointing. But, we were able to stand outside of the NICU nursery window and see the baby. Then, Tyler took me into the NICU with him to see the baby.
Before I was released, Tyler brought a video of the baby to the ER and I was able to "see" my grandson.
They've named him Aloysius Eita. He was born on May 4th at 9:26 PM, weighing 3 lbs. 1 oz. and measuring 15". He was born six weeks early. He's going to be in NICU for a while and I'm confident he's receiving good care. My own twins spent a few weeks in there just five summers ago and did well. It's a joy to see Tyler and Kanaho so lovingly welcoming of their little son. I think they're in love with their little guy! :-)
After seeing the baby, Tyler and Kanaho, we headed toward the exit of the maternity floor, Stephen pushing me in the wheelchair (Ruthie had gone home to watch the kids so Stephen could join me at the hospital) and I began to feel as if I was going to pass out. Someone got nurses who gave me smelling salts and then Stephen took me to the ER again. I spent the night there and was admitted to the hospital at about 4 AM.
I'd lost a lot of blood and fluid. It seemed as though the drain just could not handle the amount of fluid that my body needed to release. The surgeon on call suspected that a hemotoma had formed behind the drain site.
The next morning my surgeon came in and checked me over. He said that things appeared to look okay, but my blood count was down. He thought about sending me home, but felt it would be a good idea to spend a second night and have my blood checked a few more times. The count remained low each time my blood was checked. I caught up on some rest and he released me today. I'm taking a multi-vitamin with iron to try and build up my blood.
Last night, Tyler surprised me by bringing Kanaho to my room in a wheelchair, along with Kanaho's friend who came to visit from Japan. They had a little pizza party. It really boosted my spirits to have that time with them. And, how odd it was to be a hospital patient at the same time my daughter-in-law and grandson were patients!
This morning I received a surprise visit from our children's pediatrician. He came in to see how things were going and informed me that my husband had called him the night before because one of our twins had vomitted for an hour. I had no idea, because my husband hadn't wanted to worry me. We have been blessed with some great doctors. I was touched by his visit as well as by my OB/GYN's visit with me in the ER. She stopped by after delivering my grandson and helped a bit just out of concern and thoughtfulness. She delivered my three youngest and I am thankful that she was able to deliver my grandbaby, too.
Kaylee came to get me at about 10:30. We went upstairs to see the baby and Kanaho before coming home. He's doing well, other than having some jaundice at the moment. He's under "the lights" as a treatment to get his bilirubin level to go down. He has a little mask on so I couldn't see his eyes today. He's so strong. When he was receiving his tube feeding, he arched his back off the bed (lifted it completely up) and stretched his arms and legs. He's just the cutest little baby!
Tyler is already a great dad! He changes the baby's diaper, cleans his eyes, nose and mouth, and spends quite a bit of time with him in NICU. Kanaho's recovering from her c-section and will go home tomorrow.
It was so crazy the night the baby was born! I was released from the hospital, Kanaho had to have a short notice emergency c-section, and Kanaho's friend from Japan was flying in for a visit. She had NO IDEA Kanaho was in the hospital giving birth when she arrived. Ruthie Burke graciously volunteered to go to the airport and pick her up. She had Kanaho write signs in Japanese so her friend would realize it's okay to go with Ruthie. Ruthie brought her to the hospital.
Ruthie arranged for ladies from the church to bring us meals this week. What a blessing and a help! Another friend had wanted to set up meals for us, but I felt that I didn't have a right to ask because the women had already helped us with meals after the births of my three youngest, and i don't feel that I've been involved at church as much as I should be. So, I was holding back on asking for help. As it turns out, my other friend was going to sneak and set up the meals anyway. :-) People have been so kind to us. The love and kindness have been so incredibly overwhelming.
As soon as my feet hit the steps to our house today---coming from the hospital--- the surgeon called. Stephen greeted me at the door with the phone in his hand. My pathology report was available, and it didn't contain good news. :-(
The surgeon removed 13 additional nodes and one contained tumor. So, a total of 15 nodes were removed between the two surgeries and two total nodes were cancerous. One had microscopic involvement, but the other one is worse. I'll most likely start chemotherapy soon.
And, the non-invasive type of cancer (ductal carcinoma in situ), once again, came all the way to the margin of the breast tissue removed. :-( This means that I'm going to need a third breast surgery to either attempt to remove MORE tissue and get all of the cancer, or have a mastectomy. But, the surgeon says we need to wait on this surgery and get going on the chemo first.
I'm going to call my oncologist tomorrow to ask if we can move up my appointment with her. It's not until the 21st.
I very much fear the possibility that the cancer has had the chance to spread from the nodes to other parts of my body. I'm greatly disappointed, and I'm discouraged. I WANT to live and be "there" for my kids and grandbaby.
The surgeon told me to focus on the positive---that there is cancer in only two of 15 removed nodes, and that my scans showed no tumors in other places in my body. But, that doesn't remove the possibility that microscopic cancer cells could have traveled elsewhere in my body via the bloodstream. Scary!
I'm thinking that I'd better start looking for hats, scarves, turbans, etc. I am guessing that I'll start chemo before this month is over. Oh, what a long, hard road ahead.
And, Stephen cannot continually take off work without pay to take care of the kids. He's eligible under the family medical leave act for time off ---but it'd be without pay. I cannot take care of the kids and house myself just yet, but hopefully during treatment I'll be able to do quite a bit if it doesn't make me too sick.
I had my second surgery on Monday, May 3rd. Things went well and I was admitted to the hospital for a night.
The doctor removed all of the remaining nodes on the right side (armpit) and took a wider margin of breast tissue. He inserted a drain and I'll have it for a period of time.
I was released from the hospital at about 1 PM on Tuesday. Shortly after arriving home, I received a phone call from my oldest son announcing that his wife was going to have an emergency c-section that evening. Panic set in. Stephen had to stay home to watch the children. Kaylee's supervisor (her father) didn't feel he could give her the night off from work. I couldn't drive, because I'd just had surgery. I couldn't figure out how to get to the hospital to be available to my son and his wife for the birth of the baby. And, I felt lousy physically. I knew that the only way I could spend the evening at the hospital would be if someone else could take me there and help me with my physical needs. I put a note out on Facebook about the situation
Within a few minutes Ruthie Burke called and said she'd be at our place in 10 minutes. Ruthie can only imagine what a blessing she was to our family that evening. She very unselfishly gave of her time, on short notice, and helped us in one way or another througout the evening---until late at night.
(My parents were on their way to come and help in whatever way they could as well.)
Once we had arrived at the hospital we went to the delivery room that Kanaho was waiting in. We settled in for a bit. Soon after, I began to bleed quite heavily from the site where my drain is sewn in.. It seemed to be soaking through one gauze pad after another and it soiled my shirt. I called Tyler's step-mom and told her to come for the birth and to bring me a clean shirt. I wasn't about to spend the evening there in a bloody shirt. But, Kanaho's nurses urged me to go to the ER and rounded up a wheelchair to escort me there. I went there "kicking and screaming" as I was terribly upset to not be "there" for Tyler and Kanaho. I was heartbroken. :-( I'd just told Kanaho's brother and mother on Skype that I'd take care of Kanaho. And, a few weeks ago, I'd promised Kanaho that I'd join her in the recovery room so she wouldn't be alone. She'd asked me to do that, because she wanted Tyler to go to the NICU nursery with the baby, if he were to come prematurely. It killed me to not be able to follow through on that commitment, and I worried about her.
The ER staff tried to process me quickly so I could get upstairs to see Kanaho and the baby. I arrived up there AFTER the birth and AFTER Kanaho had been taken to her hospital room. It was so disappointing. But, we were able to stand outside of the NICU nursery window and see the baby. Then, Tyler took me into the NICU with him to see the baby.
Before I was released, Tyler brought a video of the baby to the ER and I was able to "see" my grandson.
They've named him Aloysius Eita. He was born on May 4th at 9:26 PM, weighing 3 lbs. 1 oz. and measuring 15". He was born six weeks early. He's going to be in NICU for a while and I'm confident he's receiving good care. My own twins spent a few weeks in there just five summers ago and did well. It's a joy to see Tyler and Kanaho so lovingly welcoming of their little son. I think they're in love with their little guy! :-)
After seeing the baby, Tyler and Kanaho, we headed toward the exit of the maternity floor, Stephen pushing me in the wheelchair (Ruthie had gone home to watch the kids so Stephen could join me at the hospital) and I began to feel as if I was going to pass out. Someone got nurses who gave me smelling salts and then Stephen took me to the ER again. I spent the night there and was admitted to the hospital at about 4 AM.
I'd lost a lot of blood and fluid. It seemed as though the drain just could not handle the amount of fluid that my body needed to release. The surgeon on call suspected that a hemotoma had formed behind the drain site.
The next morning my surgeon came in and checked me over. He said that things appeared to look okay, but my blood count was down. He thought about sending me home, but felt it would be a good idea to spend a second night and have my blood checked a few more times. The count remained low each time my blood was checked. I caught up on some rest and he released me today. I'm taking a multi-vitamin with iron to try and build up my blood.
Last night, Tyler surprised me by bringing Kanaho to my room in a wheelchair, along with Kanaho's friend who came to visit from Japan. They had a little pizza party. It really boosted my spirits to have that time with them. And, how odd it was to be a hospital patient at the same time my daughter-in-law and grandson were patients!
This morning I received a surprise visit from our children's pediatrician. He came in to see how things were going and informed me that my husband had called him the night before because one of our twins had vomitted for an hour. I had no idea, because my husband hadn't wanted to worry me. We have been blessed with some great doctors. I was touched by his visit as well as by my OB/GYN's visit with me in the ER. She stopped by after delivering my grandson and helped a bit just out of concern and thoughtfulness. She delivered my three youngest and I am thankful that she was able to deliver my grandbaby, too.
Kaylee came to get me at about 10:30. We went upstairs to see the baby and Kanaho before coming home. He's doing well, other than having some jaundice at the moment. He's under "the lights" as a treatment to get his bilirubin level to go down. He has a little mask on so I couldn't see his eyes today. He's so strong. When he was receiving his tube feeding, he arched his back off the bed (lifted it completely up) and stretched his arms and legs. He's just the cutest little baby!
Tyler is already a great dad! He changes the baby's diaper, cleans his eyes, nose and mouth, and spends quite a bit of time with him in NICU. Kanaho's recovering from her c-section and will go home tomorrow.
It was so crazy the night the baby was born! I was released from the hospital, Kanaho had to have a short notice emergency c-section, and Kanaho's friend from Japan was flying in for a visit. She had NO IDEA Kanaho was in the hospital giving birth when she arrived. Ruthie Burke graciously volunteered to go to the airport and pick her up. She had Kanaho write signs in Japanese so her friend would realize it's okay to go with Ruthie. Ruthie brought her to the hospital.
Ruthie arranged for ladies from the church to bring us meals this week. What a blessing and a help! Another friend had wanted to set up meals for us, but I felt that I didn't have a right to ask because the women had already helped us with meals after the births of my three youngest, and i don't feel that I've been involved at church as much as I should be. So, I was holding back on asking for help. As it turns out, my other friend was going to sneak and set up the meals anyway. :-) People have been so kind to us. The love and kindness have been so incredibly overwhelming.
As soon as my feet hit the steps to our house today---coming from the hospital--- the surgeon called. Stephen greeted me at the door with the phone in his hand. My pathology report was available, and it didn't contain good news. :-(
The surgeon removed 13 additional nodes and one contained tumor. So, a total of 15 nodes were removed between the two surgeries and two total nodes were cancerous. One had microscopic involvement, but the other one is worse. I'll most likely start chemotherapy soon.
And, the non-invasive type of cancer (ductal carcinoma in situ), once again, came all the way to the margin of the breast tissue removed. :-( This means that I'm going to need a third breast surgery to either attempt to remove MORE tissue and get all of the cancer, or have a mastectomy. But, the surgeon says we need to wait on this surgery and get going on the chemo first.
I'm going to call my oncologist tomorrow to ask if we can move up my appointment with her. It's not until the 21st.
I very much fear the possibility that the cancer has had the chance to spread from the nodes to other parts of my body. I'm greatly disappointed, and I'm discouraged. I WANT to live and be "there" for my kids and grandbaby.
The surgeon told me to focus on the positive---that there is cancer in only two of 15 removed nodes, and that my scans showed no tumors in other places in my body. But, that doesn't remove the possibility that microscopic cancer cells could have traveled elsewhere in my body via the bloodstream. Scary!
I'm thinking that I'd better start looking for hats, scarves, turbans, etc. I am guessing that I'll start chemo before this month is over. Oh, what a long, hard road ahead.
And, Stephen cannot continually take off work without pay to take care of the kids. He's eligible under the family medical leave act for time off ---but it'd be without pay. I cannot take care of the kids and house myself just yet, but hopefully during treatment I'll be able to do quite a bit if it doesn't make me too sick.
Saturday, May 1, 2010
Cooking Up Some Control!
We handle our stresses and cares in an assortment of ways, don't we?
Today, I decided to do a lot of cooking. I think it's because it's something I had control over--- unlike what's going on with my body. I cooked, because I could. I cooked, because after Monday, I won't be able to do it for some time. Yet, all of the cooking wore me out.
There was meatloaf, mashed potatos, squash, green beans, banana cake, fried rice, breakfast sandwiches and an omlet for my husband! And, of course, lunch and an alternate, early evening meal for the twins!
I've been running around the house like a chicken with it's head cut off for several days now, trying to accomplish anything and everything I can-- just like a mom who's "nesting" just before giving birth.
I have this rediculous "to do" list in my head, and it's quite obvious to me that I will not realistically be able to get everything I want to done prior to Monday's surgery. And, logically, why would I be tiring myself out BEFORE surgery and the required recovery period that will follow? It doesn't make sense--- other than I'm a control freak when it comes to efficiency and organization.
As IF the laundry won't need to be done again on Tuesday? Ha! Why do I feel I have to stay up tomorrow evening washing up all of the dirty laundry as if everything's going to stay clean and neat until I've recovered and can take over the household chores again? I've actually planned it out--- the twins will have their evening baths and then I'll gather up all of the dirty towels and wash them. Ha!
Wouldn't it make more sense to go to bed early and RELAX?
Humans are such complex beings. I handle my stress by cleaning. I wonder what others do?
Today, I decided to do a lot of cooking. I think it's because it's something I had control over--- unlike what's going on with my body. I cooked, because I could. I cooked, because after Monday, I won't be able to do it for some time. Yet, all of the cooking wore me out.
There was meatloaf, mashed potatos, squash, green beans, banana cake, fried rice, breakfast sandwiches and an omlet for my husband! And, of course, lunch and an alternate, early evening meal for the twins!
I've been running around the house like a chicken with it's head cut off for several days now, trying to accomplish anything and everything I can-- just like a mom who's "nesting" just before giving birth.
I have this rediculous "to do" list in my head, and it's quite obvious to me that I will not realistically be able to get everything I want to done prior to Monday's surgery. And, logically, why would I be tiring myself out BEFORE surgery and the required recovery period that will follow? It doesn't make sense--- other than I'm a control freak when it comes to efficiency and organization.
As IF the laundry won't need to be done again on Tuesday? Ha! Why do I feel I have to stay up tomorrow evening washing up all of the dirty laundry as if everything's going to stay clean and neat until I've recovered and can take over the household chores again? I've actually planned it out--- the twins will have their evening baths and then I'll gather up all of the dirty towels and wash them. Ha!
Wouldn't it make more sense to go to bed early and RELAX?
Humans are such complex beings. I handle my stress by cleaning. I wonder what others do?
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