Hello all, and Happy New Year! Thanks for reading my rambling blog posts. I am doing fairly well, and I continue on the same two chemotherapy agents. Right now I have something on my mind that's been bugging me. About myself, and also others.
In the past, I've been guilty of hearing someone's cancer complaints, and afterward thinking, and even discussing with others, how that person just doesn't know how good she has it. She's not even getting the "big time" chemo, and she's complaining of this, that and the other side effects. When I was on chemo (10 yrs ago) I lost my hair, did a lot of throwing up, and had to be in bed for a few days ... and here's this person not having any of that and they're complaining.
I admit now that I was very wrong to judge that person in that way (the issue I am referring to took place a couple of years ago.) One really has no idea how badly someone else can be feeling, based on how they look and act, or how you think they should be feeling knowing the treatments they're receiving. Just because someone is going through a different kind of treatment than I did, doesn't give me the right to judge or make comparisons to the side effects I experienced. It's all relative!
I have learned this lesson, because right now I'm on the other side. I'm not receiving the kind of chemo that makes me lose my hair or constantly be nauseated and fatigued, but I AM on chemo, and the two drugs I take DO have their side effects, and there are a lot of them. Many of them have caused me to have to change my lifestyle and daily living activities. This latest round of cancer treatments is taking away, one by one, little parts of my life. Each by itself may not sound so bad. But in combination, it definitely is affecting me.
Such as .... My independence has been affected, as I have trouble using my hands for cooking, cleaning, brushing my teeth, zipping my pants, putting on shoes, tying shoes, etc. If I was still a nurse, I definitely could no longer work. As it is, I can still do some of my work at the Shop (the desk work,) but I certainly can no longer fill orders. It's too painful on my hands. I can no longer run for fitness, earlier because of the bone mets and femur fracture I sustained a while back, but more recently it's because of my feet. They are red and painful and tender, and being on them for long periods of time exacerbates the symptoms. I have intermittent, mild bleeding from my nose, gums and rectum. I am struggling to find a balance between extreme constipation and diarrhea, and am dealing with the discomfort that accompanies each of these maladies. I've had to severely modify my diet due to burning of the lips, mouth, and esophagus. My taste is altered so that I can't taste salt. Everything tastes like it needs salt! Two to four times a month, I get a severe headache with debilitating nausea as a side effect of one of the very strong chemo drugs I'm taking, making me lose a whole day of life each time. My healthy sex life ended over a year ago because of the pain it caused, all due to the anti-hormone drugs I was on for so long. And even though I am now off of anti-hormones (which we hoped would send some life into my insides and make sex less painful,) it is still excruciatingly unbearable, which is just plain sad for a woman of my age with a hot and healthy husband who loves me and wants to be with me... but I guess things could always be worse.
A lot of people ask how I'm doing, and sometimes they really do care and really do want to know, but mostly I just say "Great!" Because overall, I AM doing great. My scans have shown great improvement and this latest treatment regimen is definitely working on the cancer. This is wonderful news, and I am truly thankful for it. I have people say "Well you LOOK great!" And I do, excluding my hands, feet, and purplish-colored lips, that is. I really am thankful that I look great, and that I don't LOOK like a cancer patient... things could always be worse.
There are other people who try to tell me what I should be eating and not eating, what I should be drinking, the supplements I should be taking ... this is supposed to be good for the immune system, that will help keep your energy levels up. "Make sure you eat some salad," I've been told on my way out to eat with my husband. Yea, and perhaps they should be giving me some green tea in my IV infusion instead of the chemo drugs! I think I can have a doggone hamburger if I want one! I've been told that I should be exercising ... one person even saying "Even if it's just 30 minutes, three times a week." EXCUSE ME?! That sounds like the workout schedule of a perfectly healthy woman who is NOT on chemotherapy for stage IV breast cancer! I agree that some exercise is definitely a good thing, for everyone, but I simply haven't had the energy. Plus YOU try to find some good handless, footless ways to exercise! What I interpret these comments as, is that I'm not doing enough to fight my cancer. Or perhaps my diet and exercise habits have somehow caused my cancer. If only I would do all these things, my cancer would go away! Never mind the fact that, as instructed by my oncologist, who works at the best cancer treatment center in the world, I have to poison myself with an oral chemotherapy agent morning and evening, 7 days on, 7 days off for, not just a specified time period -- indefinitely! Every three weeks I go get an infusion of a different poison. Also indefinitely, I might add! Unfortunately with stage IV cancer, there is no light at the end of my tunnel. There is no magical date on the calendar when I will receive my last chemo treatment. When my doctor decides to change my treatment, it will be because the current ones have stopped working and it's time to move on to the next options.
Then I've had the occasional person try to give me "perspective" as a method of dealing with my cancer and side effects. They tell me about so-and-so who has this other (worse) kind of cancer, a husband of a friend of theirs is getting radiation to the brain, and such-and-such relative is having hallucinations from their non-cancer-related disease treatment. I understand that perspective has its place in how one deals with any kind of personal trial. One can almost always find another who is less well off than oneself ... more sick, with a more deadly cancer, that has spread everywhere. It is helpful to look for the positives in your own situation and to know that things could always be worse. I myself use this to cope with my own illness. But the timing and delivery of giving this kind of advice to someone in this kind of situation is something that should be considered. Sometimes, we cancer patients just want to be listened to. If you honestly want to know how your cancer-patient friend is doing, ask and then LISTEN to their response. It's not always appropriate to interject advice about perspective. As I said before, it's all relative, and each individual handles things differently. It always IS appropriate to say "Oh, I'm so sorry you're having to go through all of that" or "Wow, that must be tough." Sometimes while you're trying to give advice, the recipient of your good intentions may be interpreting it as you minimizing what they're going through. That it's not that bad. Not as bad as .... whomever you know or whatever you've gone through. Now that I'm on the receiving end of this kind of advice, I truly have "perspective" on what kind of things to say and not to say.
Let me end by saying that I know that most folks mean well and are not intending to offend. I do try to keep that in mind. But sometimes it gets to me. I am only human and I'm not always able to let things roll off my back. Sometimes I just need to vent, which is definitely what I've accomplished here.
Kim
Thursday, January 6, 2011
Wednesday, December 8, 2010
Update and great news from Kim
I am always amazed at how much time flies by between my blog posts!
I have now had 3 doses of Avastin. The infusions have been every 3 weeks. Around day 3-4 I get a severe migraine headache accompanied by nausea and vomiting. Once it hits me, I am unable to keep any by-mouth anti-nausea or pain meds down, so my poor husband has to give me a Phenergan suppository, so I can then take something for the pain. My "stash" of pain pills (Vicodin) is what's left of my post-op prescriptions from over 4 years ago! I am prone to migraines, but usually only have 1-2 per year. With the Avastin, they have been predictable a few days after the infusion, and sometimes another time or two in between infusions. This has not been good. In bed for 1-2 days in pain or sick. Still, I am alive, and what's one day every few weeks, right?
I continue on Xeloda tablets, 4 in am, 4 in pm, one week on, one week off. My hands are not better, and perhaps a little worse. The tenderness is unbelievable. I am able to type and do anything requiring only light touch -- which is great, because if I couldn't type, I couldn't work at all. But anything that puts pressure on my fingers and palms, hurts. Things such as: opening milk, jars, containers, etc. in the kitchen; opening or packaging boxes at work; grocery shopping (yes, believe it or not, placing things in the cart and then taking them out, and then loading up the van with the bags, hurts and leaves my hands even more tender!); carrying a heavy tote bag using my hands on the handles; pulling up and zipping/buttoning my pants; putting on and tying my shoes; blow-drying my hair; and well, you get the sad, sad point here. You just don't realize how much you use your hands! My hands are also sensitive to very hot or very cold water, so when washing my hands or bathing, I need to take care that the water temperature is just right. Another odd side effect I'm having, related to the hands, is that my cuticles are rising up onto the nail, and they are tough and firm and can't be pushed back! Not attractive, at all! I am not really one to do my nails regularly, so it's not that big a deal to me, but it's really ugly. And lastly, my tops of my hands seem to have more "spots" than usual. Freckles, nevi, whatever they are, they weren't there before. Weird stuff. And also not attractive!
Also, my feet have now joined in with the side effects! The bottoms of my feet are red and are intermittently painful/tender. I am only wearing tennis shoes now to try and be as comfortable as I can, which has helped. A crazy thing that has happened with my feet are that my toes are all messed up. Danny has always suffered with ingrown toenails and pain/tenderness/swelling/drainage at the corners of his nails. I have never, ever had trouble with my toes. Well now we're in the same boat. All of my toes -- every one of them -- are red, swollen, and tender at the sides of the toenails. I treat them kindly by just wearing tennis shoes, and I think that's about all I can do for them.
Thankfully, I have had no more mouth sores. Not sure if it's because of the lowered Xeloda dose or the dietary changes I've made. Probably a combination of the two. My lips remain sensitive to heat. Still using Kids Crest and keeping my spicy food intake down (which is really a sacrifice for me!) I do still get some burning on my lips, inside my mouth, and down my esophagus when I eat even mildly spicy foods, but it's something I'm willing to tolerate once in a while to get some flavor in!
OK, I realize that I've done nothing but complain, complain, complain! Now for the great news. I saw Dr. Green a couple of days ago. She was just giddy with excitement when she gave me the wonderful news that all of my test reports were glowing! On ultrasound, they could NO LONGER FIND the nodules on my back! The chest CT scan showed that the left pleural effusion has "nearly completely resolved," the left lung's upper lobe's metastatic lesions and the chest lymph nodes show "marked improvement," and the mass in the lower lobe of my left lung has "resolved!" The CT of the abdomen showed that enlarged lymph nodes in my retroperitoneal area have "resolved," and it showed "no metastatic lesions in the liver!" My tumor marker (CA 27-29) is 28, down from 41, and now within the "normal" range. This is the most awesome news I've received about my cancer in a LONG time! Even Dr. Green was surprised at the extent of improvement in such a short time period! It's nothing short of a miracle. Evidently, God isn't finished with me yet! Makes all of my side effects very much "worth it" to know that the treatments are doing such a number on my cancer.
The plan is now for me to remain on Xeloda and Avastin for as long as they are working. Hoping and praying that that's a very long time!
I also voiced my concerns to Dr. Green about remaining on Zometa indefinitely, since I know that it stays in the bones forever and can actually cause bone brittleness with long term use. Although I am now getting it every 3 months instead of monthly which I was on for 3 1/2 years, it still concerns me. Mostly because of my age and activity level. Well let's just say my desired activity level! lol. Since there are no studies on Zometa beyond 2 years of use, I, and many other breast cancer patients still living with bone metastases, are living, walking guinea pigs. The last thing I want or need is to start having pathological fractures as a result of my cancer treatment, and not the cancer itself. So Dr. Green is taking me off of Zometa altogether for now, and we'll see how it goes. She said she was perfectly fine with that, and she did not expect any sudden flare up of bone mets issues.
Interestingly, on the way home from this terrific MD Anderson visit, we heard that Elizabeth Edwards had succumbed to breast cancer. She was diagnosed with a stage IV recurrence around the same time as I was, about 4-5 years ago, so it really hit home. Talk about being brought back down to reality! I know everyone's cancer is different, but I also know how fortunate I am to be doing so well.
I guess that's about it for now. I promise to "try" to blog more often, and also to post more about my life outside of cancer. There is more to me than that, but while trying to document my cancer battle, it appears here that it's all-consuming. Well it's not, at least most of the time!
I have now had 3 doses of Avastin. The infusions have been every 3 weeks. Around day 3-4 I get a severe migraine headache accompanied by nausea and vomiting. Once it hits me, I am unable to keep any by-mouth anti-nausea or pain meds down, so my poor husband has to give me a Phenergan suppository, so I can then take something for the pain. My "stash" of pain pills (Vicodin) is what's left of my post-op prescriptions from over 4 years ago! I am prone to migraines, but usually only have 1-2 per year. With the Avastin, they have been predictable a few days after the infusion, and sometimes another time or two in between infusions. This has not been good. In bed for 1-2 days in pain or sick. Still, I am alive, and what's one day every few weeks, right?
I continue on Xeloda tablets, 4 in am, 4 in pm, one week on, one week off. My hands are not better, and perhaps a little worse. The tenderness is unbelievable. I am able to type and do anything requiring only light touch -- which is great, because if I couldn't type, I couldn't work at all. But anything that puts pressure on my fingers and palms, hurts. Things such as: opening milk, jars, containers, etc. in the kitchen; opening or packaging boxes at work; grocery shopping (yes, believe it or not, placing things in the cart and then taking them out, and then loading up the van with the bags, hurts and leaves my hands even more tender!); carrying a heavy tote bag using my hands on the handles; pulling up and zipping/buttoning my pants; putting on and tying my shoes; blow-drying my hair; and well, you get the sad, sad point here. You just don't realize how much you use your hands! My hands are also sensitive to very hot or very cold water, so when washing my hands or bathing, I need to take care that the water temperature is just right. Another odd side effect I'm having, related to the hands, is that my cuticles are rising up onto the nail, and they are tough and firm and can't be pushed back! Not attractive, at all! I am not really one to do my nails regularly, so it's not that big a deal to me, but it's really ugly. And lastly, my tops of my hands seem to have more "spots" than usual. Freckles, nevi, whatever they are, they weren't there before. Weird stuff. And also not attractive!
Also, my feet have now joined in with the side effects! The bottoms of my feet are red and are intermittently painful/tender. I am only wearing tennis shoes now to try and be as comfortable as I can, which has helped. A crazy thing that has happened with my feet are that my toes are all messed up. Danny has always suffered with ingrown toenails and pain/tenderness/swelling/drainage at the corners of his nails. I have never, ever had trouble with my toes. Well now we're in the same boat. All of my toes -- every one of them -- are red, swollen, and tender at the sides of the toenails. I treat them kindly by just wearing tennis shoes, and I think that's about all I can do for them.
Thankfully, I have had no more mouth sores. Not sure if it's because of the lowered Xeloda dose or the dietary changes I've made. Probably a combination of the two. My lips remain sensitive to heat. Still using Kids Crest and keeping my spicy food intake down (which is really a sacrifice for me!) I do still get some burning on my lips, inside my mouth, and down my esophagus when I eat even mildly spicy foods, but it's something I'm willing to tolerate once in a while to get some flavor in!
OK, I realize that I've done nothing but complain, complain, complain! Now for the great news. I saw Dr. Green a couple of days ago. She was just giddy with excitement when she gave me the wonderful news that all of my test reports were glowing! On ultrasound, they could NO LONGER FIND the nodules on my back! The chest CT scan showed that the left pleural effusion has "nearly completely resolved," the left lung's upper lobe's metastatic lesions and the chest lymph nodes show "marked improvement," and the mass in the lower lobe of my left lung has "resolved!" The CT of the abdomen showed that enlarged lymph nodes in my retroperitoneal area have "resolved," and it showed "no metastatic lesions in the liver!" My tumor marker (CA 27-29) is 28, down from 41, and now within the "normal" range. This is the most awesome news I've received about my cancer in a LONG time! Even Dr. Green was surprised at the extent of improvement in such a short time period! It's nothing short of a miracle. Evidently, God isn't finished with me yet! Makes all of my side effects very much "worth it" to know that the treatments are doing such a number on my cancer.
The plan is now for me to remain on Xeloda and Avastin for as long as they are working. Hoping and praying that that's a very long time!
I also voiced my concerns to Dr. Green about remaining on Zometa indefinitely, since I know that it stays in the bones forever and can actually cause bone brittleness with long term use. Although I am now getting it every 3 months instead of monthly which I was on for 3 1/2 years, it still concerns me. Mostly because of my age and activity level. Well let's just say my desired activity level! lol. Since there are no studies on Zometa beyond 2 years of use, I, and many other breast cancer patients still living with bone metastases, are living, walking guinea pigs. The last thing I want or need is to start having pathological fractures as a result of my cancer treatment, and not the cancer itself. So Dr. Green is taking me off of Zometa altogether for now, and we'll see how it goes. She said she was perfectly fine with that, and she did not expect any sudden flare up of bone mets issues.
Interestingly, on the way home from this terrific MD Anderson visit, we heard that Elizabeth Edwards had succumbed to breast cancer. She was diagnosed with a stage IV recurrence around the same time as I was, about 4-5 years ago, so it really hit home. Talk about being brought back down to reality! I know everyone's cancer is different, but I also know how fortunate I am to be doing so well.
I guess that's about it for now. I promise to "try" to blog more often, and also to post more about my life outside of cancer. There is more to me than that, but while trying to document my cancer battle, it appears here that it's all-consuming. Well it's not, at least most of the time!
Friday, October 29, 2010
Kim's progress
I need to post more often, because I can't keep everything that's happening in my head for too long!
As mentioned in my last post, I was started on an oral chemotherapy agent called Xeloda a few weeks ago. Two weeks on, two weeks off. Even though Dr. Green seemed very thorough about what to expect as far as side effects, I forgot to ask her when these side effects would appear. So the first week, I felt fine, having only the occasional softer stool. Which turns out to be fine, since I normally tend toward the other end of the spectrum (tmi, I know!) I ate some really hot baked potato soup and burned my tongue, or so I thought. But that feeling of having burned my tongue wouldn't go away. It was like a mild numbness of the end portion of my tongue. My lips feel a little chapped, and they have a strange light-purplish tint to them. Regardless, I'm thinking, I. am. awesome. I can SO handle this. Maximum dose, no problem for me. The energizer bunny in me can keep a-going and going!
And, after only ONE week on Xeloda, I can swear that the palpable tumors on my left flank are smaller. It's amazing and hard to believe, but they really feel smaller already! I have Danny check, and he says "maybe." But I can tell, since I'm the one checking them way too often! I am naturally encouraged by this. It is awesome, and to me, miraculous! How can a drug kill cancer cells, and yet I am still living life as usual?
Second week, still doing pretty good! I can feel some mild discomfort in my hands, mostly in my thumb and fingers. Not so much the palms, which is where I had read it would be. Totally tolerable, though, and the skin on my hands & fingers is intact, but just a little dry. My feet are fine, no problems there. Near the end of the 2nd week, I am noticing some increasing sensitivity in my mouth and lips. I have to switch to Kids Crest, because my regular minty grown-up toothpaste feels too harsh. I notice that carbonated beverages are starting to irritate my tongue and lips. Dr. Green had instructed me to call and stop the Xeloda if I have more than 4 BM's over my usual daily number. I happen to reach that lovely milestone on my last day, but it's time to stop the Xeloda anyway, so I am not concerned.
I have now reached my "off" week, after taking Xeloda (4 tablets, twice daily) for 2 weeks. The night after my last dose, I go to a football game with my kids and have my usual game snack of nachos & cheese. I am shocked at how much burning this causes in my mouth, and even in my throat as the food & drink goes down! Understand that I pretty much live for spicy foods! Usually things can't BE too spicy for me. The Diet Coke I got with the nachos is now seriously burning my lips, tongue and throat. Clearly I have to make some changes!
I am now thinking "whew!" I have survived the 2 weeks on Xeloda and surely the side effects will be getting better during this one-week break. But this doesn't happen. I avoid too-spicy foods and carbonated drinks. I still use Kids Crest. I am unable to smile fully because when I try, it feels like my lips might rip apart. They are tight and discolored, and I notice some ulcers forming just inside the lips. Nothing a bit of lipstick can't conceal, right? I am having to constantly moisturize my lips with Vaseline Lip Therapy or ChapStick, but nothing seems to relieve the dryness. The ulcers are causing an increase in salivation which is just plain annoying. And when you think about your mouth watering, it makes it water even more! Trying to psyche myself out of this vicious cycle, and I'm feeling like a crazy person. Don't think about it, so it will stop. You are making it worse on yourself since now you are tensing up your mouth which is causing more irritated areas inside. Relax, Kim. Relax your lips and mouth. This seems to work. By the end of my "off" week, things are looking up, somewhat. I have a small crack in the skin of my thumb, which I have self-treated with Neosporin and a band-aid, to prevent infection.
It's three weeks since I started Xeloda, and it's time for a check-up. I first meet with Dr. Green's nurse, and I tell her of all of my side effects. She totally nixes the Neosporin/Band-Aid fix, and recommends Udder Butter, or something similar, for my hands. The idea is to prevent skin breakdown before it happens, by using this cream originally intended for use on a cow's udders. Lovely! The nurse also recommends that I use a baking soda & water solution before and after every meal in order to neutralize the acids in my mouth and prevent irritation and discomfort. By this time, though, I am feeling a little better and I don't think I need the baking soda swish at this time. Too bad I didn't have that information after the nachos & Diet Coke incident!
I see Dr. Green, and we discuss side effects, drug tolerance, and of course, the fact that my tumors are palpably smaller. She looks and feels, and agrees! We are all (Dr. Green, Danny and I) very excited. My blood counts are good. When we ask Dr. Green about my tumor marker levels, she say's "They're cooking." Oh my god! Danny and I completely deflate, thinking that she meant they were way-outta-sight high! She immediately clarifies that she meant they were not yet available. Talk about an emotional rollercoaster!
We also discuss the treatment plan. I ask if she still wants to start me on Avastin (an IV chemo agent) since the Xeloda seems to be working so well. She does. She explains that studies have shown them to work really well together. I'm all for it, of course. She's the doctor and I'm at MD Anderson, and I will do whatever they tell me to do. She wants to lower my Xeloda dose to try and moderate its side effects to a more tolerable level. While in my head I don't want to lower the dose, since the drug is working so well, my body is saying, yes, let's try the lower dose. I feel like I have failed at some level. I want the maximum dose, I want the cancer to die and die big-time. I think that Dr. Green can sense my feelings of inadequacy. She explains that she hasn't yet had a patient that could tolerate the max dose of Xeloda. Guess I won't be the first!
I had my first dose of Avastin and all went well. It's causing some mild fatigue, but I don't have time to stop everything in life. Too much to do with the kids and the business. I am finding that I am tired much earlier in the evening than I used to be, so I'm trying to get to bed at a more reasonable hour than usual. This is not always possible, but at least I am sleeping good when I do sleep.
A new side effect that has popped up is eye watering. Can't tell if it's from Avastin or Xeloda ... who knows? My eyes feel a little burny and watery. I've never had allergies before, but I do have a very mild runny nose, so I suppose it may be allergies since there's a first time for everything. I take Benadryl and it doesn't help. I take Claritin and it doesn't help. I try Zyrtec and it helps a little, but not completely. Will have to remember to mention this to Dr. Green. Don't like it -- makes me look sick! It still amazes me that I have this evil disease inside me and no one can tell! But the eye watering, which then causes me to blink more often, is making me appear sick. Maybe not "cancer" sick, but not well nonetheless. Hope this goes away soon.
My new Xeloda dosage regimen is 4 tablets, twice a day, one week on and one week off (instead of 2 weeks on, 1 week off.) Yesterday was my last dose of the one week on. I have 2 blisters on the inside of my lips, and the lips feel tight. I continue to avoid spicy food and carbonated drinks. Kids Crest is still working great. Still haven't felt the need for baking soda swishes -- guess my dietary changes have helped with the burning. My feet are now very sensitive and somewhat painful to walk on. My hands are tender. It's hard for me to open bottles, packaging, etc without having discomfort, so I ask for help a lot with those things (since I am rarely home alone!) I am using Udderly Smooth (similar to Udder Butter) on my hands at bedtime, and this has helped keep my skin intact, although my hands remain pretty dry throughout the day. It's hard to keep your hands constantly moisturized when you're working, typing, etc and washing your hands all day long. All in all, I think things are going well. The way I feel at this time, is that I can tolerate this new dosage... if things don't get any worse. We'll see what this next "off" week brings, and the following week "on."
As mentioned in my last post, I was started on an oral chemotherapy agent called Xeloda a few weeks ago. Two weeks on, two weeks off. Even though Dr. Green seemed very thorough about what to expect as far as side effects, I forgot to ask her when these side effects would appear. So the first week, I felt fine, having only the occasional softer stool. Which turns out to be fine, since I normally tend toward the other end of the spectrum (tmi, I know!) I ate some really hot baked potato soup and burned my tongue, or so I thought. But that feeling of having burned my tongue wouldn't go away. It was like a mild numbness of the end portion of my tongue. My lips feel a little chapped, and they have a strange light-purplish tint to them. Regardless, I'm thinking, I. am. awesome. I can SO handle this. Maximum dose, no problem for me. The energizer bunny in me can keep a-going and going!
And, after only ONE week on Xeloda, I can swear that the palpable tumors on my left flank are smaller. It's amazing and hard to believe, but they really feel smaller already! I have Danny check, and he says "maybe." But I can tell, since I'm the one checking them way too often! I am naturally encouraged by this. It is awesome, and to me, miraculous! How can a drug kill cancer cells, and yet I am still living life as usual?
Second week, still doing pretty good! I can feel some mild discomfort in my hands, mostly in my thumb and fingers. Not so much the palms, which is where I had read it would be. Totally tolerable, though, and the skin on my hands & fingers is intact, but just a little dry. My feet are fine, no problems there. Near the end of the 2nd week, I am noticing some increasing sensitivity in my mouth and lips. I have to switch to Kids Crest, because my regular minty grown-up toothpaste feels too harsh. I notice that carbonated beverages are starting to irritate my tongue and lips. Dr. Green had instructed me to call and stop the Xeloda if I have more than 4 BM's over my usual daily number. I happen to reach that lovely milestone on my last day, but it's time to stop the Xeloda anyway, so I am not concerned.
I have now reached my "off" week, after taking Xeloda (4 tablets, twice daily) for 2 weeks. The night after my last dose, I go to a football game with my kids and have my usual game snack of nachos & cheese. I am shocked at how much burning this causes in my mouth, and even in my throat as the food & drink goes down! Understand that I pretty much live for spicy foods! Usually things can't BE too spicy for me. The Diet Coke I got with the nachos is now seriously burning my lips, tongue and throat. Clearly I have to make some changes!
I am now thinking "whew!" I have survived the 2 weeks on Xeloda and surely the side effects will be getting better during this one-week break. But this doesn't happen. I avoid too-spicy foods and carbonated drinks. I still use Kids Crest. I am unable to smile fully because when I try, it feels like my lips might rip apart. They are tight and discolored, and I notice some ulcers forming just inside the lips. Nothing a bit of lipstick can't conceal, right? I am having to constantly moisturize my lips with Vaseline Lip Therapy or ChapStick, but nothing seems to relieve the dryness. The ulcers are causing an increase in salivation which is just plain annoying. And when you think about your mouth watering, it makes it water even more! Trying to psyche myself out of this vicious cycle, and I'm feeling like a crazy person. Don't think about it, so it will stop. You are making it worse on yourself since now you are tensing up your mouth which is causing more irritated areas inside. Relax, Kim. Relax your lips and mouth. This seems to work. By the end of my "off" week, things are looking up, somewhat. I have a small crack in the skin of my thumb, which I have self-treated with Neosporin and a band-aid, to prevent infection.
It's three weeks since I started Xeloda, and it's time for a check-up. I first meet with Dr. Green's nurse, and I tell her of all of my side effects. She totally nixes the Neosporin/Band-Aid fix, and recommends Udder Butter, or something similar, for my hands. The idea is to prevent skin breakdown before it happens, by using this cream originally intended for use on a cow's udders. Lovely! The nurse also recommends that I use a baking soda & water solution before and after every meal in order to neutralize the acids in my mouth and prevent irritation and discomfort. By this time, though, I am feeling a little better and I don't think I need the baking soda swish at this time. Too bad I didn't have that information after the nachos & Diet Coke incident!
I see Dr. Green, and we discuss side effects, drug tolerance, and of course, the fact that my tumors are palpably smaller. She looks and feels, and agrees! We are all (Dr. Green, Danny and I) very excited. My blood counts are good. When we ask Dr. Green about my tumor marker levels, she say's "They're cooking." Oh my god! Danny and I completely deflate, thinking that she meant they were way-outta-sight high! She immediately clarifies that she meant they were not yet available. Talk about an emotional rollercoaster!
We also discuss the treatment plan. I ask if she still wants to start me on Avastin (an IV chemo agent) since the Xeloda seems to be working so well. She does. She explains that studies have shown them to work really well together. I'm all for it, of course. She's the doctor and I'm at MD Anderson, and I will do whatever they tell me to do. She wants to lower my Xeloda dose to try and moderate its side effects to a more tolerable level. While in my head I don't want to lower the dose, since the drug is working so well, my body is saying, yes, let's try the lower dose. I feel like I have failed at some level. I want the maximum dose, I want the cancer to die and die big-time. I think that Dr. Green can sense my feelings of inadequacy. She explains that she hasn't yet had a patient that could tolerate the max dose of Xeloda. Guess I won't be the first!
I had my first dose of Avastin and all went well. It's causing some mild fatigue, but I don't have time to stop everything in life. Too much to do with the kids and the business. I am finding that I am tired much earlier in the evening than I used to be, so I'm trying to get to bed at a more reasonable hour than usual. This is not always possible, but at least I am sleeping good when I do sleep.
A new side effect that has popped up is eye watering. Can't tell if it's from Avastin or Xeloda ... who knows? My eyes feel a little burny and watery. I've never had allergies before, but I do have a very mild runny nose, so I suppose it may be allergies since there's a first time for everything. I take Benadryl and it doesn't help. I take Claritin and it doesn't help. I try Zyrtec and it helps a little, but not completely. Will have to remember to mention this to Dr. Green. Don't like it -- makes me look sick! It still amazes me that I have this evil disease inside me and no one can tell! But the eye watering, which then causes me to blink more often, is making me appear sick. Maybe not "cancer" sick, but not well nonetheless. Hope this goes away soon.
My new Xeloda dosage regimen is 4 tablets, twice a day, one week on and one week off (instead of 2 weeks on, 1 week off.) Yesterday was my last dose of the one week on. I have 2 blisters on the inside of my lips, and the lips feel tight. I continue to avoid spicy food and carbonated drinks. Kids Crest is still working great. Still haven't felt the need for baking soda swishes -- guess my dietary changes have helped with the burning. My feet are now very sensitive and somewhat painful to walk on. My hands are tender. It's hard for me to open bottles, packaging, etc without having discomfort, so I ask for help a lot with those things (since I am rarely home alone!) I am using Udderly Smooth (similar to Udder Butter) on my hands at bedtime, and this has helped keep my skin intact, although my hands remain pretty dry throughout the day. It's hard to keep your hands constantly moisturized when you're working, typing, etc and washing your hands all day long. All in all, I think things are going well. The way I feel at this time, is that I can tolerate this new dosage... if things don't get any worse. We'll see what this next "off" week brings, and the following week "on."
Sunday, October 10, 2010
Love every minute of life!
My name is Mary, I am 46 years old. In Dec 2009, I felt a small lump in
a week, I went for my Mammogram on Dec. 30th, 2009. They took a lot of
pictures, I was moved from the big waiting room to a room by myself. I had
a feeling it was bad but still remained optimistic. They wanted to do the ultrasound. The Radiologist said she was done with the armpit but wanted to look at the one in the breast. I didn’t know there was anything in the breast. She showed
me the difference between the armpit and the breast. She said the armpit looks
Fibrocystic but the breast has characteristics of breast cancer. I left and came back 3 hrs later and did a needle biopsy on both areas. On January 4th, 2010 (had to wait 5 days because of New Years Eve) I got the call that the armpit was a cyst but the Breast was cancer. I couldn’t believe it I did not have breast cancer in my family. The next few weeks were a blur, surgeon consult, MRI, lumpectomy. I went for Surgery Jan. 15th 2010, it was a lumpectomy. The tumor was only 6mm and all margins were clear, no lymph node involvement. We were all very excited until a few
Days later when I realized I have triple negative breast cancer. Triple negative is a rare Sub type of breast cancer that only affects 15% of breast cancer diagnosis. It is very aggressive, high recurrence rate, and usually happens before menopause. When I realized my only options were chemo and radiation, I decided to do both. I did 4 rounds of chemo starting with T/C. I had a bad reaction to taxotere and had to stop getting it. I started taking A/C for 3 more rounds. Losing my hair was very difficult for me. I didn’t realize how vain I was till I was bald. Chemo was very difficult and I wouldn’t wish it on anyone. However, I still worked fulltime and stayed very active with my 3 kids (14, 10, 6) and husband. I ended chemo April 1st and started Radiation May 3rd and ended June 18th. Radiation was much easier than chemo but it still burned the skin and brought on fatigue. I am currently still working fulltime and keeping busy with my kids sports activities. My husband of almost 19 years was so good to me and stayed positive. Some of the things I learned are: stay current on checkups, you must become your own advocate, surround yourself with wonderful, caring people, love every minute of life, appreciate the help that is offered and take it, look at things with a whole
new perspective. I had a hard time watching the people around me at infusion and
Radiation so sick, it broke my heart. Just live life and go get mammograms!!!!!
Mary
a week, I went for my Mammogram on Dec. 30th, 2009. They took a lot of
pictures, I was moved from the big waiting room to a room by myself. I had
a feeling it was bad but still remained optimistic. They wanted to do the ultrasound. The Radiologist said she was done with the armpit but wanted to look at the one in the breast. I didn’t know there was anything in the breast. She showed
me the difference between the armpit and the breast. She said the armpit looks
Fibrocystic but the breast has characteristics of breast cancer. I left and came back 3 hrs later and did a needle biopsy on both areas. On January 4th, 2010 (had to wait 5 days because of New Years Eve) I got the call that the armpit was a cyst but the Breast was cancer. I couldn’t believe it I did not have breast cancer in my family. The next few weeks were a blur, surgeon consult, MRI, lumpectomy. I went for Surgery Jan. 15th 2010, it was a lumpectomy. The tumor was only 6mm and all margins were clear, no lymph node involvement. We were all very excited until a few
Days later when I realized I have triple negative breast cancer. Triple negative is a rare Sub type of breast cancer that only affects 15% of breast cancer diagnosis. It is very aggressive, high recurrence rate, and usually happens before menopause. When I realized my only options were chemo and radiation, I decided to do both. I did 4 rounds of chemo starting with T/C. I had a bad reaction to taxotere and had to stop getting it. I started taking A/C for 3 more rounds. Losing my hair was very difficult for me. I didn’t realize how vain I was till I was bald. Chemo was very difficult and I wouldn’t wish it on anyone. However, I still worked fulltime and stayed very active with my 3 kids (14, 10, 6) and husband. I ended chemo April 1st and started Radiation May 3rd and ended June 18th. Radiation was much easier than chemo but it still burned the skin and brought on fatigue. I am currently still working fulltime and keeping busy with my kids sports activities. My husband of almost 19 years was so good to me and stayed positive. Some of the things I learned are: stay current on checkups, you must become your own advocate, surround yourself with wonderful, caring people, love every minute of life, appreciate the help that is offered and take it, look at things with a whole
new perspective. I had a hard time watching the people around me at infusion and
Radiation so sick, it broke my heart. Just live life and go get mammograms!!!!!
Mary
We all deserve to have a beautiful life
I´m a 33 year old Colombian and my story began last year on July 09 . I was diagnosed with a uncertain behavior tumor (possibly cancerous) on my right breast and doctors were so afraid because my mom died 11 years ago because of breast cancer and the genetic component is important, that´s why they suggested a bilateral prophylactic mastectomy because I didn´t accept to submit to the chemotherapy. My breasts were removed on January and I was reconstructed with implants and bilateral dorsal muscle flap. Unfortunately, my body rejects the implants and I got an infection with a bacteria called staphylococcus aureus that causes a capsular contraction, one month ago the implants were removed and now I have nothing than my skin and muscles in my chest. I have to wait for a year at least to have a new reconstruction. Today I´m a better person, I learned to look at me in a different way, to look at myself as a great person no matter how everyone else see me. I´m eating healthier and I´m taking all good moments with the people around me. We all deserve to have a beautiful life no matter if you have big or small breasts, if you are black or white, tall or short, thin or fat...all that counts is what you have in your mind and in your heart and the way you live your own life. WE ARE ALL FIGHTERS AND WE DESERVE TO LIVE BETTER.
In loving memory of my MOM...
Friday, October 8, 2010
A recent diagnosis...stay strong!
Amber,
Thank you for reaching out to us. I know a diagnosis like this is not easy, especially at your age and when you have a large family. You will endure and get through this and be stronger. Your kids will help keep things normal for you and love you unconditionally. Prayers to you and your family.
Amy
My name is Amber and I am 25 years old. I was diagnosed with breast cancer two months ago tomorrow (08-05-10).. I went for my yearly exam and my GYN found the lump. I have seen so many doctors in the last two months that I am tired of them. I had a lumpectomy on Aug 31st and I am doing okay so far. While I was in surgery they tested and removed all of my lymph nodes under my right arm. Later at my post op visit I found out that the cells that the Pathologist saw in my lymph nodes where not cancer cells. They looked a lot like cancer cells but where not. I have had a very hard time dealing with the fact that I am going to have to have chemo. The only reason that I am being as strong as I am, is because I have 4 wonderful kids that I want to see grow up. It’s hard to believe that I am only 25 years old and I have cancer! Sometimes I do cry and ask why me, what did I do to deserve this? I do know that I will make it through this and after I am finished with chemo and radiation I will look back and say that it is ALL worth it. To those of you out there that are going through the same thing, you are in my thoughts and prayers.
Posted by Amy at 8:21 PM 0 comments
Labels: chemotherapy, lymph nodes, pathologist, radiation
Living proof that early detection and mammograms save lives!
Jessica,
Your grandmother is living proof that early detection does save lives. I am so glad to hear that she is doing well. Cancer effects not just the patient, but the entire family. Congratualtions on her good results!
Amy
My stepmother of over 10 years was diagnosed with breast cancer just a few
days before Christmas. She had no symptoms or signs. The cancer was not
found by self examination but from a yearly mammogram. At the beginning of
the year (2010) she went in for a lumpectomy to have it removed. Luckily
it was caught in time before spreading to her lymph nodes! The doctors
thought they had gotten it all but they didn't and she needed another
surgery to have the rest of the cancer removed. Since Jan of 2010 she has
been cancer free!! I'm so proud of her for fighting this battle. Nobody in
our family has experienced anything like this before. It was so sudden and
heartbreaking to find out the news! Our family is now closer than ever!
Thank you for allowing me to share this story.
Jessica
Amber,
Thank you for reaching out to us. I know a diagnosis like this is not easy, especially at your age and when you have a large family. You will endure and get through this and be stronger. Your kids will help keep things normal for you and love you unconditionally. Prayers to you and your family.
Amy
My name is Amber and I am 25 years old. I was diagnosed with breast cancer two months ago tomorrow (08-05-10).. I went for my yearly exam and my GYN found the lump. I have seen so many doctors in the last two months that I am tired of them. I had a lumpectomy on Aug 31st and I am doing okay so far. While I was in surgery they tested and removed all of my lymph nodes under my right arm. Later at my post op visit I found out that the cells that the Pathologist saw in my lymph nodes where not cancer cells. They looked a lot like cancer cells but where not. I have had a very hard time dealing with the fact that I am going to have to have chemo. The only reason that I am being as strong as I am, is because I have 4 wonderful kids that I want to see grow up. It’s hard to believe that I am only 25 years old and I have cancer! Sometimes I do cry and ask why me, what did I do to deserve this? I do know that I will make it through this and after I am finished with chemo and radiation I will look back and say that it is ALL worth it. To those of you out there that are going through the same thing, you are in my thoughts and prayers.
Posted by Amy at 8:21 PM 0 comments
Labels: chemotherapy, lymph nodes, pathologist, radiation
Living proof that early detection and mammograms save lives!
Jessica,
Your grandmother is living proof that early detection does save lives. I am so glad to hear that she is doing well. Cancer effects not just the patient, but the entire family. Congratualtions on her good results!
Amy
My stepmother of over 10 years was diagnosed with breast cancer just a few
days before Christmas. She had no symptoms or signs. The cancer was not
found by self examination but from a yearly mammogram. At the beginning of
the year (2010) she went in for a lumpectomy to have it removed. Luckily
it was caught in time before spreading to her lymph nodes! The doctors
thought they had gotten it all but they didn't and she needed another
surgery to have the rest of the cancer removed. Since Jan of 2010 she has
been cancer free!! I'm so proud of her for fighting this battle. Nobody in
our family has experienced anything like this before. It was so sudden and
heartbreaking to find out the news! Our family is now closer than ever!
Thank you for allowing me to share this story.
Jessica
Monday, October 4, 2010
How Kim kicks off breast cancer awareness month...
It's somewhat ironic that I would be kicking off breast cancer awareness month with the start of new chemo. Here is an update on what's been going on with me.
This week I had my repeat CT scans, ultrasound, and tumor marker levels done to evaluate the effectiveness of Faslodex injections, which I've been on for about 8-10 weeks. What I already knew before this week was that the tumors that have been palpable on my left back have grown. In addition to feeling them with my fingers, I can now "feel" them when I lay down or when I sit with my back against a chair, seat or sofa. Also I've had a mild cough that seems to be elicited by my turning onto my left side. And lastly, I have been frequently failing my own "lung test," which I have been doing regularly ever since I was originally diagnosed with metastatic breast cancer in 2006. (At that time, when I laid on my right side, I was unable to take a full deep breath in. I found out shortly thereafter that my left lung had a "moderate" pleural effusion, and that that lung was restricted down to about half its normal size due to the fluid buildup around it.) In the months following my diagnosis with stage IV, the treatment regimen I was put on was very effective, and all of my metastatic lesions, including the pleural effusion, cleared up. I had no further difficulty in taking in a deep breath, but I always "tested" myself just to self-monitor (I can be psycho like that!) Anyway, lately, I couldn't always get a deep breath in. It wasn't consistent, but it seemed like I had to be in just the right position to make it happen. I knew something was up, especially since I had already gotten my tumor marker results 2 weeks before my scans: they had again drifted upward, this time up from 32 to 40 (normal range is 0-38.)
Thursday was my appointment with Dr. Green to get the results from Tuesday's chest/abdomen CT, chest x-ray, ultrasound of back chest tumors, and labs. As I waited with Danny in the exam room, I told him that I did not have a good feeling about it. Unfortunately my gut feeling was right.
The ultrasound showed that the largest of the three back tumors had grown. The other two had not changed much, however, Danny and I both thought, after seeing them on the screen during the ultrasound procedure that they looked much more prominent and visible than on the first ultrasound... but what do we know?!
The CT scan of the chest showed "an enlarging left pleural effusion which is now moderate in size. The underlying pleura appears thickened, worrisome for malignant effusion with pleural metastasis." So the fluid around my lung is back, which explains my feeling of being unable to take in a deep breath. Additionally it showed enlargement of the chest (mediastinal and hilar) lymph nodes, and also a "new skeletal metastasis in T12" -- the spine. Great.
The CT scan of the abdomen showed some new lymph node enlargement in the retroperitoneal area (back of abdomen,) the same new bone mets @ T12 seen in the chest CT, and the real kicker: bilobar hepatic metastasis. I now officially have breast cancer metastasis to the liver. No longer can I say "Well at least it's not in my liver." All I can say is, THIS REALLY SUCKS!!
It was like I was punched in the gut. Dr. Green took a lot of time explaining what the new treatment plan would be, and she showed us the CT findings on the computer. The plan is now for me to discontinue all anti-hormonal therapy. No more Faslodex or Zolodex. I will continue on Zometa for the bone mets.
I will go on chemotherapy, which I haven't had since my original bc diagnosis in 2000. However, this one, Xeloda, is an oral chemotherapy agent. Great, I get to poison MYSELF, at home! I've read about it already, since Dr. Green had told me earlier that the next step would be Xeloda. I've read that it's an easy chemo, as compared to the big ones like I received 10 years ago, but it's not without side effects. I can expect some diarrhea and most likely "hand and foot syndrome" which is burning/redness/pain of the palms of the hands and soles of the feet. I will not lose my hair, thank goodness for the small things! The dosage is highly individualized. Dr. Green starts near the maximum recommended dose and will lower it gradually based on my tolerance of the side effects. I am to take 8 (gigantic) tablets a day -- 4 in am, 4 in pm. Two weeks on and 1 week off. After the first cycle, I will see Dr. Green to discuss side effects and possibly change the dose. After the second cycle (in 6 weeks,) I will be re-scanned and re-labbed to evaluate effectiveness.
Dr. Green also wants to add Avastin, another chemo drug, to my new treatment regimen. The FDA has recently decided to remove Avastin from the market, which has started a whirlwind of controversy among breast cancer patients who are taking it and having positive outcomes. I can only imagine being on a drug that's working and then having the government step in and say No, You can't have this anymore! The FDA's decision was to be made any day now, so Dr. Green wanted to wait before scheduling my infusion to make sure that they weren't going to pull it. Their decision turned out to be to postpone their decision until December. This is good for me! I am now scheduled to receive my first dose of Avastin at my 3-week checkup.
Avastin is given IV, and it also doesn't cause hair loss. It's not that I'm afraid to lose my hair. It's just that without hair, one truly LOOKS like a cancer patient to rest of the world. Right now, unless I tell people, no one has a clue that I am battling stage IV cancer!
I read some of Avastin's literature tonight, and I must say, I am scared to death! Nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin are the most common side effects. One serious potential side effect is GI tract perforation!! Oh. My. God. If the cancer doesn't kill me, maybe the treatment will!
I pray that I have no serious side effects, and that these drugs will stop the progression of my cancer. Lord, please help me through this. My biggest fear is that something bad will happen, suddenly, and that my life will be abruptly changed for the worse. At least the cancer hasn't spread to my brain...
This week I had my repeat CT scans, ultrasound, and tumor marker levels done to evaluate the effectiveness of Faslodex injections, which I've been on for about 8-10 weeks. What I already knew before this week was that the tumors that have been palpable on my left back have grown. In addition to feeling them with my fingers, I can now "feel" them when I lay down or when I sit with my back against a chair, seat or sofa. Also I've had a mild cough that seems to be elicited by my turning onto my left side. And lastly, I have been frequently failing my own "lung test," which I have been doing regularly ever since I was originally diagnosed with metastatic breast cancer in 2006. (At that time, when I laid on my right side, I was unable to take a full deep breath in. I found out shortly thereafter that my left lung had a "moderate" pleural effusion, and that that lung was restricted down to about half its normal size due to the fluid buildup around it.) In the months following my diagnosis with stage IV, the treatment regimen I was put on was very effective, and all of my metastatic lesions, including the pleural effusion, cleared up. I had no further difficulty in taking in a deep breath, but I always "tested" myself just to self-monitor (I can be psycho like that!) Anyway, lately, I couldn't always get a deep breath in. It wasn't consistent, but it seemed like I had to be in just the right position to make it happen. I knew something was up, especially since I had already gotten my tumor marker results 2 weeks before my scans: they had again drifted upward, this time up from 32 to 40 (normal range is 0-38.)
Thursday was my appointment with Dr. Green to get the results from Tuesday's chest/abdomen CT, chest x-ray, ultrasound of back chest tumors, and labs. As I waited with Danny in the exam room, I told him that I did not have a good feeling about it. Unfortunately my gut feeling was right.
The ultrasound showed that the largest of the three back tumors had grown. The other two had not changed much, however, Danny and I both thought, after seeing them on the screen during the ultrasound procedure that they looked much more prominent and visible than on the first ultrasound... but what do we know?!
The CT scan of the chest showed "an enlarging left pleural effusion which is now moderate in size. The underlying pleura appears thickened, worrisome for malignant effusion with pleural metastasis." So the fluid around my lung is back, which explains my feeling of being unable to take in a deep breath. Additionally it showed enlargement of the chest (mediastinal and hilar) lymph nodes, and also a "new skeletal metastasis in T12" -- the spine. Great.
The CT scan of the abdomen showed some new lymph node enlargement in the retroperitoneal area (back of abdomen,) the same new bone mets @ T12 seen in the chest CT, and the real kicker: bilobar hepatic metastasis. I now officially have breast cancer metastasis to the liver. No longer can I say "Well at least it's not in my liver." All I can say is, THIS REALLY SUCKS!!
It was like I was punched in the gut. Dr. Green took a lot of time explaining what the new treatment plan would be, and she showed us the CT findings on the computer. The plan is now for me to discontinue all anti-hormonal therapy. No more Faslodex or Zolodex. I will continue on Zometa for the bone mets.
I will go on chemotherapy, which I haven't had since my original bc diagnosis in 2000. However, this one, Xeloda, is an oral chemotherapy agent. Great, I get to poison MYSELF, at home! I've read about it already, since Dr. Green had told me earlier that the next step would be Xeloda. I've read that it's an easy chemo, as compared to the big ones like I received 10 years ago, but it's not without side effects. I can expect some diarrhea and most likely "hand and foot syndrome" which is burning/redness/pain of the palms of the hands and soles of the feet. I will not lose my hair, thank goodness for the small things! The dosage is highly individualized. Dr. Green starts near the maximum recommended dose and will lower it gradually based on my tolerance of the side effects. I am to take 8 (gigantic) tablets a day -- 4 in am, 4 in pm. Two weeks on and 1 week off. After the first cycle, I will see Dr. Green to discuss side effects and possibly change the dose. After the second cycle (in 6 weeks,) I will be re-scanned and re-labbed to evaluate effectiveness.
Dr. Green also wants to add Avastin, another chemo drug, to my new treatment regimen. The FDA has recently decided to remove Avastin from the market, which has started a whirlwind of controversy among breast cancer patients who are taking it and having positive outcomes. I can only imagine being on a drug that's working and then having the government step in and say No, You can't have this anymore! The FDA's decision was to be made any day now, so Dr. Green wanted to wait before scheduling my infusion to make sure that they weren't going to pull it. Their decision turned out to be to postpone their decision until December. This is good for me! I am now scheduled to receive my first dose of Avastin at my 3-week checkup.
Avastin is given IV, and it also doesn't cause hair loss. It's not that I'm afraid to lose my hair. It's just that without hair, one truly LOOKS like a cancer patient to rest of the world. Right now, unless I tell people, no one has a clue that I am battling stage IV cancer!
I read some of Avastin's literature tonight, and I must say, I am scared to death! Nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin are the most common side effects. One serious potential side effect is GI tract perforation!! Oh. My. God. If the cancer doesn't kill me, maybe the treatment will!
I pray that I have no serious side effects, and that these drugs will stop the progression of my cancer. Lord, please help me through this. My biggest fear is that something bad will happen, suddenly, and that my life will be abruptly changed for the worse. At least the cancer hasn't spread to my brain...
Tuesday, September 7, 2010
The right support will get you through...learn to accept help.
Kim,
Thank you for your honesty and sharing your story with us. Learning to accept help can be difficult, but it is a time in your life when you really need support.
Amy
Thank you for your honesty and sharing your story with us. Learning to accept help can be difficult, but it is a time in your life when you really need support.
Amy
It was a routine trip for a mammogram procedure. The radiologist found a white spot that looked concerning so off I went for a biopsy. That was pretty scary, as I was not really sure what to expect. The doctor had done his best to prepare me but nothing can actually prepare someone unless they are going through it. After the biopsy I went home and waited for the results. 3 days later the call came it was DCIS, Ductal Carcinoma In Situ, the physician assistant went on talking about what it was, where it was and that we need to get a surgery date set up right now, the more she talked the faster her words came. I told her to wait, that I was not going to do anything for 2 weeks, I needed time to digest everything and that I had a zillion questions and I had people I needed to talk to. My sister, mother and a very good friend are breast cancer survivors so I got on the phone with them and explained what was happening. They were very supportive and gave me advice and the types of questions I need to ask and also told me to look on the Internet for more information and also call a cancer center near me and talk to them. I did all this and the more I searched the more information I found the more confusing I became. Not sure what to do next, I called my primary care physician and set up an appointment with her and shared with her what I knew. She was encouraging and let me know that it was OK to take some time. And that I need to keep a notebook and write down my questions and the answers I received, she also advised me to either take a friend or a tape recorder and let it record the entire time I am visiting with the doctor because later I will have questions and I need to remind myself what the answer was.
After the 2 weeks I set up my appointment for surgery, once the surgery was done and I got home, I did what I felt like I could do. If I couldn’t do it or didn’t feel up to it I didn’t do it. The hardest part was asking for help and then letting them do it. I sit here now, the night before my doctor’s appointment to check to make sure all is healing well and then in 2 days I go and visit with the oncologist to set up my radiation treatments. They want me to go everyday Monday through Friday for 6 weeks.
During and up to this point in time, my emotions have run amuck. Thoughts of suicide, thoughts of not going to the radiation treatments, thoughts of going back to work and then taking on a 2nd full time job, thoughts of my body is deformed and that I am no longer attractive not even to my husband, thoughts of what did I do in my life that caused God to hate me so much that He allowed this to happen to me. And thoughts of if I survived this, what is going to hit me next. And then let’s talk about the tears; at first they never came, I had to help my husband deal with this so I had to be strong. Once he got over the initial shock then it was my turn to fall apart, I have actually cried twice. I didn’t have anyone that I could call and talk to at that moment so I had to let the tears flow and then pull myself together. I feel better after letting the tears out, but feel worse because I cried you know the headache and puffy eyes that follows.
Cancer is a word that scares the bejebers out of people but with the improvements in modern medicine it doesn’t have to scare us. The best advice I can give you is to gather people around you who you trust and know will be supportive and let them help you. Either make meals, clean the house, or cry on their shoulders. We need the release and love that women can give each other.
I know that men need it too, but I am not sure where they can turn to, I wish I had some answers for them.
Love your fellow cancer survivor
Kim F.
My cup is 1/2 full!
Jenine,
You have such a positive attitude and this is good medicine! You inspire others with your story. Thank you so much for sharing it with us!
Amy
You have such a positive attitude and this is good medicine! You inspire others with your story. Thank you so much for sharing it with us!
Amy
My motto has always been "my glass is half full". April 27th I discovered my lump it’s the size of a golf ball. May 12, I saw my OBGYN and June 1, I was diagnosed with triple negative invasive ductile carcinoma. I am 34 years old. Tuesday July 6, I had my surgery to remove my lump, (who I have named Elvis) and I meet with my Oncologist on Monday. Now my motto is " my cup is 1/2 full". LOL! I started a site on caringbridge.org so that my friends and family could see that cancer was not something to be sad about. it was not going to ruin my day. The sun is shining, the birds are chirping, and life is filled with reasons to smile. Dr. Brown told me I would lose my long hair, that was the only time I cried. I had donated my hair 4 times to locks of love. Now I will get to do a fifth and final time. hair will grow back it will take 4-5 years to get this long, but it will grow back. I have received tremendous support from my co-workers up and down the east coast. As far away as Baltimore to Greensboro North Carolina. The boss even bought me a new touch pad for my computer when she heard I couldn't use my right hand for the mouse. I have gone to the ACS relay for life every year for 4 years with my friend Jen. My husband the manly construction worker pretended to be an Italian hairstylist while he washed my hair in the sink because I couldn't do it. He makes me laugh randomly and often. My Best friend Joy has gone to every appointment, stood by my side for my biopsy, bought me anything she could find that was pink and cleaned my house. Both my sister-in-laws took care of my beloved dog, sent me literature in the mail, and found beautiful jewelry that had pink ribbons on it. My estranged father now wants to be friends on SKYPE. So I ask. Why be sad? Why cry? Why waste a beautiful day worrying about something that I did not cause to happen? I have a wonderful support group, even the children of my friends have brought me pink flowers, made pink candy, and plan on participating in the race for the cure in October. I have no reason to be sad, no reason to cry, because my life is surrounded by love, friendship, hope and support. Cancer will not ruin my day, because this is the only July 17th, 2010 that I will ever have, and I plan on enjoying it! Remember laughter is the Breast medicine, and Elvis has left the building! Live each day with no regrets, smile at a stranger. have faith in humanity. Don’t sweat the small stuff. Save your energy for something fun don’t waste it on little things. I may live for 30 days I may live for 15 years, but I plan on living, laughing and loving as much as I can, while I can, because my cup is 1/2 full!
Thank you for letting me share my abbreviated story and I hope it will encourage others to look on the bright side.
God bless my mom...
Thank you for sharing the story about your mom. Early detection does saves lives! Listen to your body.
Amy
Amy
I would like to share the story of my mom, Yolanda.
My beloved mom felt a lump in her left breast, she did not pay much attention and a couple of months later it became a little harder and her skin became like a little hard black and blue. She went to Mt. Sinai Hospital, Miami Beach, Florida to see Dr. Juan Paramo (God bless him) and in a matter of three weeks, we sadly found out she had breast cancer in her left breast (where the little hard black and blue was), also in her right breast (noticeable through mammogram only) and in both glands under her arms.
It has been such a horrific roller coaster ride: in less than a month! My mom is so in shape and so active that she was still working from 7am to 12pm a part-time job in a beautiful restaurant in the heart of South Beach, after work she will work on Lincoln Road (beautiful outdoors mall in South Beach) and almost everyday she will run from the South Beach heat by entering Macy's and as feminine and girlie as she is, she would always find something pretty on sale to buy.
My mom is loved and care by my dad Luis, my son and her only grandson Richard(Richie) and myself. My son is on vacation and my dad is retired and I returned to work Tuesday July 20. She has a nurse that comes every day to cure her wounds and her drains (she has four).
My mom is so brave, so courageous, so beautiful. We love her and we pray for her speedy recovery.
Her doctor, Dr. Juan Paramo, tells us that since it was total amputation of both breast and all cancerous tissue, she will not need radiation nor chemotherapy, so she is happy.
For now on, I will help as much as I can for cancer research because we need to find a cure.
Cancer is an ugly thing and I have faith in God that we will find a cure soon.
Thank you very much and God bless my mom.
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