Cathy has been feeling pretty good the last few days. Digestion is working pretty much like normal with the exception of a little bit of heartburn. She has gained back some of the weight she lost by eating regular foods like rice, chicken, vegetables, fruits, yogurt, and such. She is also able to eat them in almost normal quantities.
Her hair is not as cooperative as her digestive system. It's beginning to fall out more now. Cathy reached the point that she was ready for a really short haircut yesterday. She's wearing hats now and maybe a wig when it's not so hot. Her hair is not gone, but it's thinning and thinning pretty evenly all over her head. She doesn't have any patches gone, just lots of exposed scalp. She says she looks like a boy, but I think she's beautiful.
Saturday, June 30, 2012
Thursday, June 28, 2012
Ups and downs. Yesterday Cathy didn't feel quite as good as Tuesday, but still better than last week. She had a little fever all day, low 99s, and was a little achy. I think she's ok with attributing the achiness to the neulasta, since that is a common side effect. Cathy's diet was still conservative, but a little more expansive than yesterday. She had some chicken and some applesauce cake in addition to her staples of broth, eggs, toast, and yogurt.
Last night Cathy told me that her scalp was sore. She said it felt like a sunburn. From what we've read this means that hair follicles are dying and hair loss is on the way. Cathy is ready, though. She's prepared to shave her head when the clumps start falling out. She's also been practicing with scarves to cover her head. I like the phrase "urban turban".
Ups and downs. It seems like every Monday during football season Marvin Lewis says the same thing in his Bengals press conferences. Regardless of a win or loss he almost always says something along the lines of, "We have to keep an even keel. We can't get too high with the highs or too low with the lows." In the past it has kind of irritated me when he says that because it seems like a stock statement. I think it's real and genuine, now, though. No matter how great or difficult the day may be, there are sure to be days in the future that will be better and worse. We can savor the little victories and hurt on the days of pain, but we can acknowledge that regardless God is with us always to temper the ups and downs.
Last night Cathy told me that her scalp was sore. She said it felt like a sunburn. From what we've read this means that hair follicles are dying and hair loss is on the way. Cathy is ready, though. She's prepared to shave her head when the clumps start falling out. She's also been practicing with scarves to cover her head. I like the phrase "urban turban".
Ups and downs. It seems like every Monday during football season Marvin Lewis says the same thing in his Bengals press conferences. Regardless of a win or loss he almost always says something along the lines of, "We have to keep an even keel. We can't get too high with the highs or too low with the lows." In the past it has kind of irritated me when he says that because it seems like a stock statement. I think it's real and genuine, now, though. No matter how great or difficult the day may be, there are sure to be days in the future that will be better and worse. We can savor the little victories and hurt on the days of pain, but we can acknowledge that regardless God is with us always to temper the ups and downs.
Tuesday, June 26, 2012
Today Cathy told me, "Next chemo treatment tell me to remember Tuesday." She told me that because today was the first day she felt good. Yesterday Cathy had an appointment with Andy, the oncology nurse practitioner. Her blood counts were all low, but not unexpectedly low. Here is a before treatment and after treatment assessment of some values:
White blood cells 5.1 K/uL before 2.3 K/uL after
Hematocrit 41.4% before 35.7% after
Granulocytes 3.5 K/uL before 2.3 K/uL after
Platelets 207 K/uL before 108 K/uL after
After the appointment she got an IV bag of fluids. That bag, along with a dose of Imodium, hydrated Cathy and halted her diarrhea. She felt good today! Today Cathy was able to eat an egg, toast, yogurt, crackers, apple juice, and lots of Chicken Mineral Magic Broth. I made this broth for her with a chicken carcass, carrots, red potatoes, sweet potatoes, onions, celery, kombu, garlic, leeks, peppercorns, juniper berries, allspice, bay leaves, and parsley. It was a recipe from the Cancer-Fighting Kitchen book and she said it was magic, making her feel full and nourished.
I think for the next treatment, if we can get the good bacteria back in her gut, prepare her body properly, and prepare better with stuff we know agrees with her digestion and tastebuds, then maybe we can knock one day off the feeling bad part. Maybe then she won't want to remember Tuesday, but she'll say, "Just one week" or "Tell me to remember Monday."
White blood cells 5.1 K/uL before 2.3 K/uL after
Hematocrit 41.4% before 35.7% after
Granulocytes 3.5 K/uL before 2.3 K/uL after
Platelets 207 K/uL before 108 K/uL after
After the appointment she got an IV bag of fluids. That bag, along with a dose of Imodium, hydrated Cathy and halted her diarrhea. She felt good today! Today Cathy was able to eat an egg, toast, yogurt, crackers, apple juice, and lots of Chicken Mineral Magic Broth. I made this broth for her with a chicken carcass, carrots, red potatoes, sweet potatoes, onions, celery, kombu, garlic, leeks, peppercorns, juniper berries, allspice, bay leaves, and parsley. It was a recipe from the Cancer-Fighting Kitchen book and she said it was magic, making her feel full and nourished.
I think for the next treatment, if we can get the good bacteria back in her gut, prepare her body properly, and prepare better with stuff we know agrees with her digestion and tastebuds, then maybe we can knock one day off the feeling bad part. Maybe then she won't want to remember Tuesday, but she'll say, "Just one week" or "Tell me to remember Monday."
Sunday, June 24, 2012
Cathy didn't have a nap today! That's really encouraging because it (a) means she's feeling much better and (b) means that she will hopefully have a good night's sleep from being awake all day. Her energy is much better and her personality is shining through. Her digestive system is still not cooperating fully, but she is nearly nausea-free. Her appetite is kind of back, at least to the point that it's getting her in a bit of trouble. She was really hungry for spinach tonight, so my mom steamed some. It didn't agree, but she enjoyed eating it. That seems to be positive, I think. Cathy has told me that even though she feels like eating more she understands the need to be a little more conservative. Now that we know a little more of what to expect I think I can be better prepared to offer her more options that will be appealing and nourishing.
Tomorrow Cathy has an appointment with the oncology nurse practitioner. They will do bloodwork to make sure everything is ok with counts and we will have a chance to ask more questions now that she's been through a cycle. It was great to see Cathy back today.
Tomorrow Cathy has an appointment with the oncology nurse practitioner. They will do bloodwork to make sure everything is ok with counts and we will have a chance to ask more questions now that she's been through a cycle. It was great to see Cathy back today.
Friday, June 22, 2012
Just a short update for today. Cathy is still really tired. Nausea is still under control also. She has used up her Zofran for this cycle and is still taking the Compazine as needed, but so far so good. Cathy's eyes were open for more hours today than yesterday. I don't know if it was sheer will power or not. She said she felt the same even though Marty and I both thought she looked like she had better energy. She made it to the wig shop and got a wig that looks almost exactly like her short hair now - really cute. That was a tough trip, though, exhausting for her. I hope that tomorrow brings better feelings for her.
Thursday, June 21, 2012
"Going to the hospital took a lot out of me." That's what Cathy just told me. This morning Cathy had an echocardiogram at Bethesda North. This procedure was basically an ultrasound of her heart with some evaluations of the rhythms as measured by some kind of wavelength measurement device. She has already received word that her heart is normal, which is what we expected. After chemo they will do this again to gauge if there has been any damage inflicted by the drugs, and the adriamycin in particular, which is a possibility.
"I don't know if I want to do this five more times." That's the first thing Cathy said to me this morning. Of course, she will, and she will be tough and poised as she always is. Those words are the closest to complaining she has come this whole time. I take that back. A few days after diagnosis she said, "This stinks." Cathy is like that, she's amazing.
If you didn't know, Jonah and Aaron were both naturally birthed. Right there we have a testament to Cathy's toughness. This is something men could not do. There was some yelling when Aaron was born. When Jonah was born, though, her only complaint was at one point during contractions, "That's a little bit ow-ee." During delivery there was only grunting. When Clara was born Cathy had an epidural to see what it was like. She made it through all the contractions talking like nothing was happening. When the nurse told her it was time to call in the doctor and start pushing she said, "Already?" I don't write this to make any other mothers out there feel bad that childbirth was hard. I know it was hard. I couldn't do it. I just use those stories as examples of how I'm always awed by Cathy's toughness and determination.
Today was hard for Cathy. She didn't tell me it was hard, but I could see it. Her nausea has been completely under control, not non-existent, but under control (thank you for your prayers). Cathy has, however, slept most of the day, or at least been resting with her eyes closed. She's had a low-grade fever all day, about 99.5. The doctors aren't concerned unless it goes up or doesn't go away in a couple of days. She has very little stamina. A few minutes of walking around or conversation wear her out. Her eyes indicate that she's on the upswing, though.
Other bright spots: Cathy ate toast, chicken, and banana bread today. We also learned that chemotherapy clears up psoriasis.
"I don't know if I want to do this five more times." That's the first thing Cathy said to me this morning. Of course, she will, and she will be tough and poised as she always is. Those words are the closest to complaining she has come this whole time. I take that back. A few days after diagnosis she said, "This stinks." Cathy is like that, she's amazing.
If you didn't know, Jonah and Aaron were both naturally birthed. Right there we have a testament to Cathy's toughness. This is something men could not do. There was some yelling when Aaron was born. When Jonah was born, though, her only complaint was at one point during contractions, "That's a little bit ow-ee." During delivery there was only grunting. When Clara was born Cathy had an epidural to see what it was like. She made it through all the contractions talking like nothing was happening. When the nurse told her it was time to call in the doctor and start pushing she said, "Already?" I don't write this to make any other mothers out there feel bad that childbirth was hard. I know it was hard. I couldn't do it. I just use those stories as examples of how I'm always awed by Cathy's toughness and determination.
Today was hard for Cathy. She didn't tell me it was hard, but I could see it. Her nausea has been completely under control, not non-existent, but under control (thank you for your prayers). Cathy has, however, slept most of the day, or at least been resting with her eyes closed. She's had a low-grade fever all day, about 99.5. The doctors aren't concerned unless it goes up or doesn't go away in a couple of days. She has very little stamina. A few minutes of walking around or conversation wear her out. Her eyes indicate that she's on the upswing, though.
Other bright spots: Cathy ate toast, chicken, and banana bread today. We also learned that chemotherapy clears up psoriasis.
Wednesday, June 20, 2012
Chemo hit today. Yesterday was pretty normal, but today was different. Cathy woke up at a regular time and then took a morning nap. She was conversational in the morning and then took another morning nap. This afternoon was mostly naps with occasional interaction. The evening has been almost all sleep. She says it's not like any other fatigue she's ever had. She feels exhausted, but after sleeping she doesn't feel rested.
Thankfully, the nausea has been mild so far. She says it feels like the "bluhs" when she's pregnant - uncomfortable, but not anything she can't manage. We're staying on top of her nausea meds - compazine and zofran, and she's had a little ginger ale. She hasn't eaten much today, but the nurse said that would be normal. She's had a couple of graham crackers, a little cereal, and a bit of Bolthouse Farms smoothie. Nothing is appealing to her. Her mouth is extremely dry, as well, also normal.
Cathy's spirit is definitely there, though. She peeked a smile at me from the sofa during dinner, she told me to make sure Clara had a big bottle tonight, and she let me know that my vehicle registration expired today.
Thankfully, the nausea has been mild so far. She says it feels like the "bluhs" when she's pregnant - uncomfortable, but not anything she can't manage. We're staying on top of her nausea meds - compazine and zofran, and she's had a little ginger ale. She hasn't eaten much today, but the nurse said that would be normal. She's had a couple of graham crackers, a little cereal, and a bit of Bolthouse Farms smoothie. Nothing is appealing to her. Her mouth is extremely dry, as well, also normal.
Cathy's spirit is definitely there, though. She peeked a smile at me from the sofa during dinner, she told me to make sure Clara had a big bottle tonight, and she let me know that my vehicle registration expired today.
Monday, June 18, 2012
It's hard to keep the lump out of your throat when you drive in the neighborhood and every tree in the tree lawn has a pink ribbon tied to it. This completely and beautifully foiled the opening I had planned for this post. I had planned to lead with 1 down, 5 to go, but what a way to come home.
Cathy is such a trooper. We arrived at the oncologist at about 9:10. Cathy got her bloodwork done and then told Marty and I to come back to meet with Dr. Drosick and then his nurse, Margaret. Dr. Drosick reviewed the medicine Cathy would get and the procedures. He reevaluated the tumor and gauged it at 3 cm, which is about the same size it has been. That's reassuring. Margaret went over all the chemo stuff, which was a lot of information to process.
We went on to the treatment room. The treatment room is very large and shoebox shaped with nurses desks on either side of the entry and treatment areas on either extreme end of the room. In the middle, across from the nurses desks, were some table with puzzles and books to pass the time. Cathy chose a chair on the "quiet" end. The people on the quiet end told us that the other end was the "rowdy" side. The "rowdy" side has a TV and the "quiet" side doesn't. We waited a long time while they got all the paperwork set up. Once everything was set, nurse Carol poked Cathy's port with a really weird looking butterfly needle. She got about an hour and a half of premeds all hung in bags. These included:
Emend - for nausea
Zofran - for nausea
Dexamethasone - a steroid for something I can't remember
Benadryl - to avoid allergic reactions
Zantac - to prevent burping up right away
After that the chemo came. There were three drugs in succession:
Adriamycin - bright read and pushed through a syringe while mixed with saline
Cytoxan - hung in a bag
Taxotere - hung in a bag
The Benadryl made Cathy really sleepy, so she had a good nap for about an hour or so. She feels pretty good right now. She will take Zofran tomorrow morning to help with the nausea and then Compazine if she needs it. You would never know by looking at her that she's full of completely toxic materials. She has such an amazing spirit. She had such calm and presence the whole time. She made me feel more at ease. I was, and still am, extremely nervous about chemo. I just don't know what to expect and don't want Cathy to suffer. We will stay on top of the nausea meds in hopes of avoiding that suffering.
Tomorrow will bring a shot of Neulasta to boost white blood cells. Thursday, if she can manage it, she will have a baseline EKG, then Monday an appointment with the oncology nurse practitioner, Andy to follow up. Here we go!
Cathy is such a trooper. We arrived at the oncologist at about 9:10. Cathy got her bloodwork done and then told Marty and I to come back to meet with Dr. Drosick and then his nurse, Margaret. Dr. Drosick reviewed the medicine Cathy would get and the procedures. He reevaluated the tumor and gauged it at 3 cm, which is about the same size it has been. That's reassuring. Margaret went over all the chemo stuff, which was a lot of information to process.
We went on to the treatment room. The treatment room is very large and shoebox shaped with nurses desks on either side of the entry and treatment areas on either extreme end of the room. In the middle, across from the nurses desks, were some table with puzzles and books to pass the time. Cathy chose a chair on the "quiet" end. The people on the quiet end told us that the other end was the "rowdy" side. The "rowdy" side has a TV and the "quiet" side doesn't. We waited a long time while they got all the paperwork set up. Once everything was set, nurse Carol poked Cathy's port with a really weird looking butterfly needle. She got about an hour and a half of premeds all hung in bags. These included:
Emend - for nausea
Zofran - for nausea
Dexamethasone - a steroid for something I can't remember
Benadryl - to avoid allergic reactions
Zantac - to prevent burping up right away
After that the chemo came. There were three drugs in succession:
Adriamycin - bright read and pushed through a syringe while mixed with saline
Cytoxan - hung in a bag
Taxotere - hung in a bag
The Benadryl made Cathy really sleepy, so she had a good nap for about an hour or so. She feels pretty good right now. She will take Zofran tomorrow morning to help with the nausea and then Compazine if she needs it. You would never know by looking at her that she's full of completely toxic materials. She has such an amazing spirit. She had such calm and presence the whole time. She made me feel more at ease. I was, and still am, extremely nervous about chemo. I just don't know what to expect and don't want Cathy to suffer. We will stay on top of the nausea meds in hopes of avoiding that suffering.
Tomorrow will bring a shot of Neulasta to boost white blood cells. Thursday, if she can manage it, she will have a baseline EKG, then Monday an appointment with the oncology nurse practitioner, Andy to follow up. Here we go!
Sunday, June 17, 2012
What a mix of emotions as we prepare for tomorrow. I can't presume to speak for Cathy, but I know that I am both nervous and excited, though excited is not the right word. Anticipation is more correct. I'm ready for this disease to start retreating. I've been praying for the medicine to be effective and for Cathy to have limited side effects. Of all the side effects, I think it's the nausea that she dreads the most. I think Cathy's ready for hair loss, ready for fatigue, ready for weird dreams and early menopause. She really hates nausea. She's thinking of the medicine as little Pac-Man characters going in and eating the cancer cells. That's a pretty positive image, I think.
Cathy's appointment is at 9:15. We'll leave about 8:30. Thank you in advance for your prayers.
Cathy's appointment is at 9:15. We'll leave about 8:30. Thank you in advance for your prayers.
Friday, June 15, 2012
I'm going to try something a little different here. Hopefully, you'll like it.
Ahh, that's better. Cathy has a port. We woke up really early after a rough night. We're both pretty tired! We got to bed about midnight, which is becoming the norm. Aaron woke up with growing pains or shin splints or something about 2:30 and then Clara woke up about 3:30. I didn't prepare the bottle ahead of time because I'm not in that practice yet. So, poor Cathy had to go down and get a bottle ready. Then we got up about 5:00 to be at the hospital at 6:00. Cathy had Cathy and Kathy as attending nurses. She was in surgery in the interventional radiology department by 8:15 and out by 9:00. The radiologist and the nurses were laughing as they rolled Cathy out because she apparently talked the whole time she was in surgery. The said most of it was nonsense, but they enjoyed it anyway. The whole staff was entirely entertained by Cathy. They can't wait for her to come back to get the port out!
Cathy has an incision about one inch long just below her left collarbone. Just below that is a little bump that is the port input. There is a tube that is about 4 inches long that extends from the input area to her jugular. It's a little bizarre, but very useful. She has some cream that will numb the area for chemo treatments. When she goes in for treatment they just stick the needle in that little input bump. This is nice because it will be direct intravenous delivery and they won't have to search for a vein every time. The port has some other advantages, too. They can put in contrast dyes for scans and can do blood draws, as well. There are some other advantages, but I can't remember what they are. Oh, she can shower with it.
She was a little nauseous afterward and pretty tired. Her neck is tired and a little sore, but she's in much better spirits after a good nap. Thank you for your prayers, it was a successful procedure!
Ahh, that's better. Cathy has a port. We woke up really early after a rough night. We're both pretty tired! We got to bed about midnight, which is becoming the norm. Aaron woke up with growing pains or shin splints or something about 2:30 and then Clara woke up about 3:30. I didn't prepare the bottle ahead of time because I'm not in that practice yet. So, poor Cathy had to go down and get a bottle ready. Then we got up about 5:00 to be at the hospital at 6:00. Cathy had Cathy and Kathy as attending nurses. She was in surgery in the interventional radiology department by 8:15 and out by 9:00. The radiologist and the nurses were laughing as they rolled Cathy out because she apparently talked the whole time she was in surgery. The said most of it was nonsense, but they enjoyed it anyway. The whole staff was entirely entertained by Cathy. They can't wait for her to come back to get the port out!
Cathy has an incision about one inch long just below her left collarbone. Just below that is a little bump that is the port input. There is a tube that is about 4 inches long that extends from the input area to her jugular. It's a little bizarre, but very useful. She has some cream that will numb the area for chemo treatments. When she goes in for treatment they just stick the needle in that little input bump. This is nice because it will be direct intravenous delivery and they won't have to search for a vein every time. The port has some other advantages, too. They can put in contrast dyes for scans and can do blood draws, as well. There are some other advantages, but I can't remember what they are. Oh, she can shower with it.
She was a little nauseous afterward and pretty tired. Her neck is tired and a little sore, but she's in much better spirits after a good nap. Thank you for your prayers, it was a successful procedure!
Thursday, June 14, 2012
This is the longest post ever. I'm sorry, but please read it all, especially if you're cooking for us at some point.
Have you ever been in a conversation when someone said, "Let me be honest with you..." It kind of makes me want to say, "Have you been lying to me up to this point?" Well, let me be honest with you about this blog and my food list.
Honestly, this blog is meant to keep everybody up to date, but it's also for me. Because if I have to say all this stuff all the time, or even once sometimes, I will become a crying mess. The clear scans are good news and Clara taking the bottle is good news and Cathy feeling better from the infection is good news, but there is a lot of crappy stuff to come. It's going to make me tremendously sad to watch this amazing woman, who I love, suffer through all of this. So, I need this blog as much as you do.
Honestly, I'm a little obsessive about this food list. This is why. First of all, I can't control the cancer. I also can't control the treatment or how effective it is. I can't make Cathy not get sick or lose her hair from the chemo. I can't help Cathy keep her breasts or ovaries, or get back the four months of nursing that she lost. There is so much of this that I can't control and that I can't help with. I can make sure she gets the best nutrition possible. When I read that great diet and exercise decrease recurrence by 60% and that if she makes it three years without recurrence it's about 80% certain it won't come back. If she makes it five years without recurrence the percentage goes up to around 90%. If she makes it to eight years without recurrence the percentage is near 100%. Those are numbers I like. If I can contribute to that, if I can control a little part of that, then I'm not completely powerless in this fight.
Honestly, I'm not in control of any of it. God controls all of it. I know that. Maybe I can help. Maybe I can make things a little easier or better. Like Pastor Amy said on Sunday - if God is my co-pilot, I'm in the wrong seat. If God is in the driver's seat, maybe I can get him a coffee or change the radio station or some other little thing to help. Maybe that means getting the food He intended for Cathy to have into her body.
Honestly, I'm a little obsessive about food anyway. I like food. I like to cook. I like cooking for Cathy. She eats what I make. Even if it's bad, she pretends she likes it. And I believe that where our food comes from makes a difference for our heath. It will also make a big difference in Cathy's fight. For all the generous people who have volunteered to make meals for us, it's been a really hard balance for me with the nutrition thing and letting go of cooking. Partly because I want the best for Cathy, partly because I like doing it, and you probably had no idea this has been a gigantic internal struggle this has been for me and I'm giving you way too much information. So, I say to those wonderful meal makers, thank you, truly thank you. There will be times in the very near future that I don't have the energy to cook for Cathy and you are coming through for our family.
I know this is the longest post ever. If you are cooking for us, please read the food list. There are a lot of foods that are supposed to be really healthy for cancer fighters, but we don't know much about them. We would love to try your recipes if, say, you know a good recipe for kale or jackfruit or seaweed. Jonah and Aaron don't share our interest! That's another layer of complication. Anyway, please read the food list to do the best for Cathy. And do this for yourself if you are not a believer in organics or not interested in the sources of our food- get a nice looking organic, grassfed steak (which will cost more) and a nice looking, regular steak. Cook them both medium rare with nothing but salt and pepper and notice how different they taste. They taste different because God made cows to eat grass, not corn. If you are intrigued by the difference in taste, read The Omnivore's Dilemma by Michael Polan. On a side note, grassfed milk is an acquired taste and one I have not been able to acquire. It kind of tastes like grass. On another side note, thank you to Sonal, for helping me put this together and encouraging me to broaden it. Without further adieu, the list, in link form (if you have questions ask me):
https://www.dropbox.com/s/6s4woun3f595zxz/Foods%20for%20Cathy.docx
Have you ever been in a conversation when someone said, "Let me be honest with you..." It kind of makes me want to say, "Have you been lying to me up to this point?" Well, let me be honest with you about this blog and my food list.
Honestly, this blog is meant to keep everybody up to date, but it's also for me. Because if I have to say all this stuff all the time, or even once sometimes, I will become a crying mess. The clear scans are good news and Clara taking the bottle is good news and Cathy feeling better from the infection is good news, but there is a lot of crappy stuff to come. It's going to make me tremendously sad to watch this amazing woman, who I love, suffer through all of this. So, I need this blog as much as you do.
Honestly, I'm a little obsessive about this food list. This is why. First of all, I can't control the cancer. I also can't control the treatment or how effective it is. I can't make Cathy not get sick or lose her hair from the chemo. I can't help Cathy keep her breasts or ovaries, or get back the four months of nursing that she lost. There is so much of this that I can't control and that I can't help with. I can make sure she gets the best nutrition possible. When I read that great diet and exercise decrease recurrence by 60% and that if she makes it three years without recurrence it's about 80% certain it won't come back. If she makes it five years without recurrence the percentage goes up to around 90%. If she makes it to eight years without recurrence the percentage is near 100%. Those are numbers I like. If I can contribute to that, if I can control a little part of that, then I'm not completely powerless in this fight.
Honestly, I'm not in control of any of it. God controls all of it. I know that. Maybe I can help. Maybe I can make things a little easier or better. Like Pastor Amy said on Sunday - if God is my co-pilot, I'm in the wrong seat. If God is in the driver's seat, maybe I can get him a coffee or change the radio station or some other little thing to help. Maybe that means getting the food He intended for Cathy to have into her body.
Honestly, I'm a little obsessive about food anyway. I like food. I like to cook. I like cooking for Cathy. She eats what I make. Even if it's bad, she pretends she likes it. And I believe that where our food comes from makes a difference for our heath. It will also make a big difference in Cathy's fight. For all the generous people who have volunteered to make meals for us, it's been a really hard balance for me with the nutrition thing and letting go of cooking. Partly because I want the best for Cathy, partly because I like doing it, and you probably had no idea this has been a gigantic internal struggle this has been for me and I'm giving you way too much information. So, I say to those wonderful meal makers, thank you, truly thank you. There will be times in the very near future that I don't have the energy to cook for Cathy and you are coming through for our family.
I know this is the longest post ever. If you are cooking for us, please read the food list. There are a lot of foods that are supposed to be really healthy for cancer fighters, but we don't know much about them. We would love to try your recipes if, say, you know a good recipe for kale or jackfruit or seaweed. Jonah and Aaron don't share our interest! That's another layer of complication. Anyway, please read the food list to do the best for Cathy. And do this for yourself if you are not a believer in organics or not interested in the sources of our food- get a nice looking organic, grassfed steak (which will cost more) and a nice looking, regular steak. Cook them both medium rare with nothing but salt and pepper and notice how different they taste. They taste different because God made cows to eat grass, not corn. If you are intrigued by the difference in taste, read The Omnivore's Dilemma by Michael Polan. On a side note, grassfed milk is an acquired taste and one I have not been able to acquire. It kind of tastes like grass. On another side note, thank you to Sonal, for helping me put this together and encouraging me to broaden it. Without further adieu, the list, in link form (if you have questions ask me):
https://www.dropbox.com/s/6s4woun3f595zxz/Foods%20for%20Cathy.docx
Let's lead with the good news. Cathy's CT and bone scans came back clear! That's beyond good news. That doesn't mean that it isn't in the lymph system, but they said that the lymph nodes looked good. It does mean that it isn't in her bones or other organs, as I understand it. Also, as I understand it, we won't know about lymph until they do surgery. I believe when they do surgery they will send a dye up her breast and find the sentinel node. When they find the sentinel node they will remove it and test it. I believe that if the sentinel is ok that means that the rest are ok also. Needless to say, we were pretty relieved to get that news today.
Cathy found a wig today. I've seen a picture, but I haven't seen it on her. She also found a few hat type things to wear. I'm going to have to find out what to call them. I also may have to cut this post short - Clara is getting another tooth and needs some attention.
Cathy is the best. This is going to be so hard for her and she knows that. She's such a good person that she is also really concerned about how hard it will be for the boys and me, too. We already found out how hard it has been for Clara. With lots of prayers Clara has made some big adjustments. Also, with lots of prayers, Cathy got the clear on her scans. Praise be to God on those two huge things!
Jayne sent us this from her doctor's office. Tru dat, homies!
Cathy found a wig today. I've seen a picture, but I haven't seen it on her. She also found a few hat type things to wear. I'm going to have to find out what to call them. I also may have to cut this post short - Clara is getting another tooth and needs some attention.
Cathy is the best. This is going to be so hard for her and she knows that. She's such a good person that she is also really concerned about how hard it will be for the boys and me, too. We already found out how hard it has been for Clara. With lots of prayers Clara has made some big adjustments. Also, with lots of prayers, Cathy got the clear on her scans. Praise be to God on those two huge things!
Jayne sent us this from her doctor's office. Tru dat, homies!
Wednesday, June 13, 2012
Cathy's tests all went fine yesterday. We don't know results yet, but she choked down the barium ok and had a really quick bone scan - way faster than mine usually are. Maybe I'll go to Bethesda North next time if I can.
We did get the genetic testing results back much faster than we expected. Cathy is positive for BRCA1 and negative for BRCA2. It is my understanding that this is important in determining the extent of surgery and for informing relatives of their potential for carrying the gene mutation. Forgive me if I'm repeating myself, but having BRCA1 means that Cathy is at a much higher likelihood for recurrence after she beats this. Therefore, surgery will most likely mean bilateral mastectomy and removal of the ovaries because the BRCA gene is linked to a high percentage of ovarian cancer as well. There's no final decision on that, but it seems that is what Dr. Ho will recommend and I think Cathy would rather play it safe by being more aggressive.
Jayne has a regular check up tomorrow and she will ask her doctor about genetic testing for her and Marty because Cathy got the gene from one or both of them. There's no blaming here, that's just the way genetics works. Our genetic counselor has offered to meet with both of them to discuss all of the implications.
It's been great having our moms here. Robby helped me transplant some trees today. She has a green thumb and mine is brown, so I appreciate giving those trees a leg up. She's out with Jonah now doing some birthday shopping. Jayne is spending some good mother/daughter time with Cathy at a couple of wig shops. Aaron, Clara, and I are going to go to the library and get my filthy car washed/vacuumed. It helps to be able to divide and conquer.
There's no way we will be able to say thank you enough to all the people who have offered help and who have helped so far. There are so many kind friends, family, and even strangers. Thank you all.
We did get the genetic testing results back much faster than we expected. Cathy is positive for BRCA1 and negative for BRCA2. It is my understanding that this is important in determining the extent of surgery and for informing relatives of their potential for carrying the gene mutation. Forgive me if I'm repeating myself, but having BRCA1 means that Cathy is at a much higher likelihood for recurrence after she beats this. Therefore, surgery will most likely mean bilateral mastectomy and removal of the ovaries because the BRCA gene is linked to a high percentage of ovarian cancer as well. There's no final decision on that, but it seems that is what Dr. Ho will recommend and I think Cathy would rather play it safe by being more aggressive.
Jayne has a regular check up tomorrow and she will ask her doctor about genetic testing for her and Marty because Cathy got the gene from one or both of them. There's no blaming here, that's just the way genetics works. Our genetic counselor has offered to meet with both of them to discuss all of the implications.
It's been great having our moms here. Robby helped me transplant some trees today. She has a green thumb and mine is brown, so I appreciate giving those trees a leg up. She's out with Jonah now doing some birthday shopping. Jayne is spending some good mother/daughter time with Cathy at a couple of wig shops. Aaron, Clara, and I are going to go to the library and get my filthy car washed/vacuumed. It helps to be able to divide and conquer.
There's no way we will be able to say thank you enough to all the people who have offered help and who have helped so far. There are so many kind friends, family, and even strangers. Thank you all.
Monday, June 11, 2012
Today was a pretty encouraging day altogether! Clara drank 4 oz. of formula first thing in the morning and went right back to sleep. My mom came this morning to stay with the kids while Cathy and I went to appointments. Clara also drank 4 oz. of formula for my mom twice. Mom said the second time she would have kept going if there was more to drink. I think she would have kept going for me, too.
We were at doctors offices for about 6 hours today. The first, with the oncologist, was very positive. Dr. Drosick is a hobby musician from a family of educators, so we clicked right away. He gave us the straight dope on current research and the divide between corporate driven research and research he trusts. He was very confident and confidence inspiring. We decided that Cathy would get a port later this week (turns out to be Friday) then chemo will start on Monday.
The chemo treatment will be TAC, which is taxotere, adriamycin, and cytoxan. Some courses alternate AC and T, but Cathy will be getting all three at once. She will get them on Mondays every three weeks. This will occur on six cycles. We can pretty well predict, then, how things are going to go. She will be treated on 6/18, 7/9, 7/30, 8/20, 9/10, and 10/1. If Cathy is typical, which up to this point she has not been, she will feel ok on Monday and Tuesday, then feel bad on Wednesday, Thursday, and Friday. The second week she shouldn't feel too nauseous, but will be really tired. The third week she should feel close to normal, just in time to start over again. Everybody reacts to chemo differently, but this is typical.
Cathy will receive Neulasta to keep her white blood cell count up. She also has the option for a clinical trial of Halaven later on down the road if things don't go according to plan. We'll have to research that quite a bit before committing. Hopefully, it won't even be necessary.
The boys and I went to the batting cages. Jonah hit really well, as usual, and Aaron hit 44/80 pitches his first time ever at the batting cages. As I write this Cathy is feeding Clara her fourth bottle of the day! Prayers answered!
We were at doctors offices for about 6 hours today. The first, with the oncologist, was very positive. Dr. Drosick is a hobby musician from a family of educators, so we clicked right away. He gave us the straight dope on current research and the divide between corporate driven research and research he trusts. He was very confident and confidence inspiring. We decided that Cathy would get a port later this week (turns out to be Friday) then chemo will start on Monday.
The chemo treatment will be TAC, which is taxotere, adriamycin, and cytoxan. Some courses alternate AC and T, but Cathy will be getting all three at once. She will get them on Mondays every three weeks. This will occur on six cycles. We can pretty well predict, then, how things are going to go. She will be treated on 6/18, 7/9, 7/30, 8/20, 9/10, and 10/1. If Cathy is typical, which up to this point she has not been, she will feel ok on Monday and Tuesday, then feel bad on Wednesday, Thursday, and Friday. The second week she shouldn't feel too nauseous, but will be really tired. The third week she should feel close to normal, just in time to start over again. Everybody reacts to chemo differently, but this is typical.
Cathy will receive Neulasta to keep her white blood cell count up. She also has the option for a clinical trial of Halaven later on down the road if things don't go according to plan. We'll have to research that quite a bit before committing. Hopefully, it won't even be necessary.
The boys and I went to the batting cages. Jonah hit really well, as usual, and Aaron hit 44/80 pitches his first time ever at the batting cages. As I write this Cathy is feeding Clara her fourth bottle of the day! Prayers answered!
Sunday, June 10, 2012
Church was nice today. So much love and care. Prayers are assuring. We're thankful to be in the many wonderful communities here. Our church community, neighborhood community, school and band communities, athletic team communities. So many loving people. The generous offers of help are amazing. Thank you all. I wish we knew more now so that we could take advantage of the offers. That will come in time, I'm sure, though. In the meantime, know that if you are reading this blog (and it's been read at least 561 times) we are thankful for your care, love, help, and most of all prayers.
We got a visit from my mom and dad, Corby and Emily today. It was nice and comforting to have them here. We got to catch up a bit, play ball with Jonah, watch Clara crawl around and catch fireflies with Aaron. Mom is going to stay on for a few days at least and help us with the kids and the house. We're so thankful for family and great care.
Clara ate 4 oz. of formula today and will almost certainly have more than that tomorrow. If you've been praying for her, it's working. I made only 2 oz. tonight so I don't keep wasting it. She chugged it all and fell asleep in my arms. Almost like nursing. If I had made more she would have drunk it.
We're full of nervousness and anticipation for this week. Most people look forward to the weekend, but not when you're waiting for medical procedures. Things don't happen on the weekends unless you're in the ER. Blood isn't drawn, scans aren't done, labs don't analyze. All we do is wait. The waiting stinks.
We got a visit from my mom and dad, Corby and Emily today. It was nice and comforting to have them here. We got to catch up a bit, play ball with Jonah, watch Clara crawl around and catch fireflies with Aaron. Mom is going to stay on for a few days at least and help us with the kids and the house. We're so thankful for family and great care.
Clara ate 4 oz. of formula today and will almost certainly have more than that tomorrow. If you've been praying for her, it's working. I made only 2 oz. tonight so I don't keep wasting it. She chugged it all and fell asleep in my arms. Almost like nursing. If I had made more she would have drunk it.
We're full of nervousness and anticipation for this week. Most people look forward to the weekend, but not when you're waiting for medical procedures. Things don't happen on the weekends unless you're in the ER. Blood isn't drawn, scans aren't done, labs don't analyze. All we do is wait. The waiting stinks.
Saturday, June 9, 2012
The day got past me and I didn't get the food list finished! It was a good day, though, ups and downs, like they say. The morning started nicely, but still with pain for Cathy. She began to develop a low grade fever, so she called Dr. Ho. We don't want weaning to cause a blocked duct and an infection that might delay chemo. Dr. Ho called in Keflex for Cathy just in case and also told her she could pump once or twice a day to relieve the pressure. Pumping hurts Cathy, but it helps a bit. Cabbage. Weird, but somewhat effective. Google it to grasp the phenomenon. My explanation would do it no justice.
Clara also had a little fever today. I've been worried she'll get dehydrated, so I've been monitoring her with that in mind. She was pretty fussy this morning and started to feel hot, so I took her temperature. When it read 99.2 I began to get worried. However, later today Cathy was feeding Clara some cereal and saw her first tooth poking through! That explains the fever and the extra fussiness. On top of that good news, Clara drank 3 ounces of formula tonight and even took a pull on the bottle for an entire minute without breaking. That's an up!
Jonah came home and had an amazing experience on the mission trip. The youth group has a guiding question: Where did I see God today? Jonah's answers to that question on the trip were so faithful and encouraging. These children are such a blessing!
Clara also had a little fever today. I've been worried she'll get dehydrated, so I've been monitoring her with that in mind. She was pretty fussy this morning and started to feel hot, so I took her temperature. When it read 99.2 I began to get worried. However, later today Cathy was feeding Clara some cereal and saw her first tooth poking through! That explains the fever and the extra fussiness. On top of that good news, Clara drank 3 ounces of formula tonight and even took a pull on the bottle for an entire minute without breaking. That's an up!
Jonah came home and had an amazing experience on the mission trip. The youth group has a guiding question: Where did I see God today? Jonah's answers to that question on the trip were so faithful and encouraging. These children are such a blessing!
Yesterday we learned a lot about dietary needs for cancer patients, specifically tnbc patients and blood type O- patients. I have a lot more to learn, but later today I'm going to put together a list of must have and must avoid foods for Cathy. This list will surely evolve as we learn more. Here's where we are:
Monday we meet with Dr. Drosick, the oncologist
Tuesday are CT and bone scans.
Hopefully results come back fast and we can get the chemo going asap.
Cathy is having a lot of chest pain from weening Clara so quickly. If you are praying, please pray for the milk to be absorbed into Cathy's body quickly and for her to avoid any infections from blocked milk ducts. Please pray that Clara will like formula. She hates it and probably isn't getting enough water or the right nutrition right now.
I'll check back in later today with some food info.
Monday we meet with Dr. Drosick, the oncologist
Tuesday are CT and bone scans.
Hopefully results come back fast and we can get the chemo going asap.
Cathy is having a lot of chest pain from weening Clara so quickly. If you are praying, please pray for the milk to be absorbed into Cathy's body quickly and for her to avoid any infections from blocked milk ducts. Please pray that Clara will like formula. She hates it and probably isn't getting enough water or the right nutrition right now.
I'll check back in later today with some food info.
Thursday, June 7, 2012
People keep telling us to expect ups and downs. Today was like that. Last night ended with despair and this morning kind of continued that feeling. Clara just does not understand why she can't nurse. Last night she cried, "MUMUMUMU." Cathy and I both lost it at that point. Clara still doesn't care for formula, but the lactation consultant says that eventually she'll figure out that formula is her only source. That's sad. Cathy's now-cancerous breasts have fed three healthy children. The factory is now closed for business - except that the assembly line is still working. Her chest is gigantic, full of milk, and really painful. She has some frozen turnip greens and some cabbage leaves to make it feel better though.
Today Cathy had a blood draw to test for BRCA 1/2 gene mutation. This gene mutation is a cancer predictor at a rate of about 80%. They highly suspect her to have this gene because she is so young. BRCA is an inherited gene that likely came from one side of the family or the other. The purpose isn't to place blame, but to try to predict the future and perhaps warn other extended family members of the possibility that they might possess the gene. It is likely that Cathy has BRCA 1 or 2. The numbers 1 and 2 represent different sides of the dna helix. Having a mutated side means that only one other side of the gene needs to mutate for cancer to get going. People who have BRCA 1 and 2 typically form juvenile cancers because they start with a loaded gun, so to speak. Having only BRCA is more like having a gun and a box of bullets, you may or may not put the two together.
Cathy is looking for wigs. We picked up Aaron. I gave Clara a bath and she fell asleep for the night without nursing for the first time in her life.
Today Cathy had a blood draw to test for BRCA 1/2 gene mutation. This gene mutation is a cancer predictor at a rate of about 80%. They highly suspect her to have this gene because she is so young. BRCA is an inherited gene that likely came from one side of the family or the other. The purpose isn't to place blame, but to try to predict the future and perhaps warn other extended family members of the possibility that they might possess the gene. It is likely that Cathy has BRCA 1 or 2. The numbers 1 and 2 represent different sides of the dna helix. Having a mutated side means that only one other side of the gene needs to mutate for cancer to get going. People who have BRCA 1 and 2 typically form juvenile cancers because they start with a loaded gun, so to speak. Having only BRCA is more like having a gun and a box of bullets, you may or may not put the two together.
Cathy is looking for wigs. We picked up Aaron. I gave Clara a bath and she fell asleep for the night without nursing for the first time in her life.
Wednesday, June 6, 2012
Now that you know a little about Cathy, I'll update you on her situation and give some further background.
This is the short version, by the way. The long version is to come.
Cathy, my wonderful and beautiful wife, has triple negative breast cancer. That means she has about a 2cm ductal carcinoma tumor in her right breast. That tumor is estrogen and progesterone receptor negative and HER2 negative. Being triple negative means that hormone therapy and heptacin, which are common breast cancer treatments will have no effect on this tumor. The good news in that, is that triple negative breast cancer is often quite responsive to chemotherapy. Triple negative breast cancer is way too long, so in the spirit of my father's favorite pastime, I'm going to turn that into an acronym - tnbc. Those of you who know my dad just spit your drinks on your computer screens.
Tomorrow Cathy will have bloodwork done to determine if she has the genetic marker for breast cancer. She will also get a bottle of contrast dye for a CT scan next week. On the 12th, I think it's the 12th, she will have a CT and a bone scan. Next week seems like the time that chemo will begin as well, but we don't have a date yet. Sometime in the next couple of weeks she will have an MRI, as well. An MRI will not be helpful now because her breasts are still active in producing milk. Which brings us to another important issue - kids. We have an 8 month old daughter who just quit breast milk today. If any of you have any addictions you've tried to quit, I liken this to maybe heroin. The formula (in the heroin analogy would be methadone) is just not cutting it. Another task for tomorrow will be talking to pediatricians and lactation consultants to get good advice on this. Aaron is 8 and staying with a friend tonight. I will devote a whole post or more to our great friends at some point. Jonah is 11 and in Sandusky on a mission trip. With both of them gone Cathy and I were able to have a good cry together tonight. There will be more tears.
This is the short version, by the way. The long version is to come.
Cathy, my wonderful and beautiful wife, has triple negative breast cancer. That means she has about a 2cm ductal carcinoma tumor in her right breast. That tumor is estrogen and progesterone receptor negative and HER2 negative. Being triple negative means that hormone therapy and heptacin, which are common breast cancer treatments will have no effect on this tumor. The good news in that, is that triple negative breast cancer is often quite responsive to chemotherapy. Triple negative breast cancer is way too long, so in the spirit of my father's favorite pastime, I'm going to turn that into an acronym - tnbc. Those of you who know my dad just spit your drinks on your computer screens.
Tomorrow Cathy will have bloodwork done to determine if she has the genetic marker for breast cancer. She will also get a bottle of contrast dye for a CT scan next week. On the 12th, I think it's the 12th, she will have a CT and a bone scan. Next week seems like the time that chemo will begin as well, but we don't have a date yet. Sometime in the next couple of weeks she will have an MRI, as well. An MRI will not be helpful now because her breasts are still active in producing milk. Which brings us to another important issue - kids. We have an 8 month old daughter who just quit breast milk today. If any of you have any addictions you've tried to quit, I liken this to maybe heroin. The formula (in the heroin analogy would be methadone) is just not cutting it. Another task for tomorrow will be talking to pediatricians and lactation consultants to get good advice on this. Aaron is 8 and staying with a friend tonight. I will devote a whole post or more to our great friends at some point. Jonah is 11 and in Sandusky on a mission trip. With both of them gone Cathy and I were able to have a good cry together tonight. There will be more tears.
Let me tell you about the most wonderful person I know. Her name is Cathy. Cathy cares about people, genuinely cares. She connects with people on a personal level instantly. Cathy plays a game with new people she meets. She tries to see how fast she can find common ground. It never takes longer than 15 seconds. I don't know how she does it.
Cathy is kind and loving. She does for others. She listens to them, prays for them, and helps them. She's completely selfless about it. She has no agenda for herself, no self-serving ambition. That's not to say that she lacks ambition or drive. It's just that she would never let personal ambition get in the way of a good relationship. She truly cares for others more than herself.
Silliness. Cathy has lots of it. She makes up songs and dances. April Fools Day is her favorite day of the year. She hides things so that people will find them at inopportune times. She rearranges items for maximum inconvenience and hilarity. She tapes shut the openings of frequently used items in a very inconspicuous manner.
Cathy is faithful. She is full of faith. Faith in God and faith in His Son, Jesus. She is also faithful to me and our children, as well as the rest of our family. And we have faith in her.
It's hard to introduce Cathy in a few paragraphs. Most of the people who will read this already know her and could add so many insights into what makes her the best person I know. I tried (and as I reread, realize with only modest success) to help you know her in those few paragraphs. You'll just have to take my word for it - if you don't know her and you happened to meet her, you would love her. I do.
Cathy has a few hard months ahead of her and I want to use this blog to keep her friends and family up to date on what's happening. I've never been a diary keeper, a personal journalist, a blogger, or a facebook updater. What I have to write is too important to keep to myself and too personal to put on facebook. I guess this is my disclaimer that I might screw this up. I hope not, because Cathy deserves the best words written about her and you deserve to know how she's doing. So, I'll make some (hopefully) daily updates on what we know and we will all witness together, via the magic of the interweb, the Cathy's personal beauty and the power of our Lord to heal her.
Cathy is kind and loving. She does for others. She listens to them, prays for them, and helps them. She's completely selfless about it. She has no agenda for herself, no self-serving ambition. That's not to say that she lacks ambition or drive. It's just that she would never let personal ambition get in the way of a good relationship. She truly cares for others more than herself.
Silliness. Cathy has lots of it. She makes up songs and dances. April Fools Day is her favorite day of the year. She hides things so that people will find them at inopportune times. She rearranges items for maximum inconvenience and hilarity. She tapes shut the openings of frequently used items in a very inconspicuous manner.
Cathy is faithful. She is full of faith. Faith in God and faith in His Son, Jesus. She is also faithful to me and our children, as well as the rest of our family. And we have faith in her.
It's hard to introduce Cathy in a few paragraphs. Most of the people who will read this already know her and could add so many insights into what makes her the best person I know. I tried (and as I reread, realize with only modest success) to help you know her in those few paragraphs. You'll just have to take my word for it - if you don't know her and you happened to meet her, you would love her. I do.
Cathy has a few hard months ahead of her and I want to use this blog to keep her friends and family up to date on what's happening. I've never been a diary keeper, a personal journalist, a blogger, or a facebook updater. What I have to write is too important to keep to myself and too personal to put on facebook. I guess this is my disclaimer that I might screw this up. I hope not, because Cathy deserves the best words written about her and you deserve to know how she's doing. So, I'll make some (hopefully) daily updates on what we know and we will all witness together, via the magic of the interweb, the Cathy's personal beauty and the power of our Lord to heal her.
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