A few friends have asked, what does Frank (my husband) think of my blog? Well, he knows I have a blog but I have not shared it with him. Some people may think it is strange that I haven't but maybe one day I will, just right now is not the right time. He is under a lot of stress and having him read my blog, sometimes depressing at times, is not going to help him. I share my thoughts verbally with him but I do hold back because I worry about him. I worry that if something happened to him, like a heart attack, I simply would be lost. I need his support to get me through this time in my life. He has his worries....for goodness sake we have 4 kids to put through college! I don't want to over burden him. I can handle my situation. It is a true test of our relationship and love. This has made everything about us stronger. We realize we can't worry about the small stuff because life is too precious. We just need to get through this and move on.
My kids know I have a blog also. The only ones who have expressed an interest is my oldest daughter and my youngest son Brock. It's not that Grant and Maren don't care, they just don't think it's a big deal. Alex (who is 18) realizes there are things I post that I have not told her. She is curious and I would not be surprised if she is reading this. After all what happens to me will affect her and her life, decisions she makes. She is older and understands this. She also realizes that breast cancer can kill. We had a mom in the neighborhood who died from breast cancer. Alex was very young when this happened but it still had an impact on her life. I have tried to be as honest and up front with Alex about everything that has happened to me. I do try to keep the fear away from her and I don't speculate. I give her facts. I probably did something about a week ago that may be very controversial with people, but I showed her my reconstructed breasts.
All my kids have a habit of coming into our room like it's their room. They knock and walk in. I had just stepped out of the shower and had just put on my underwear when I heard Alex coming around the corner into my bathroom. I had enough time to throw my hands over my "breasts" or my expanders. We just stood there looking at each other. Awkward few seconds. I finally said to her, "are you curious as to what I look like?" She said, yes. I asked her if she wanted to see what I looked like. She said yes. It was that moment I made the decision to show my daughter my reconstructed breasts, scars and all. I remember when I was in my late 20's and I saw the photo's in a Life magazine of women who had mastectomy's, it terrified me. The pictures were of grossly deformed skin that had been twisted with huge scars running across once where breasts were. I think these images made me fear the thought of having a mastectomy.
I feel the reconstruction that I have had up to this point is very good. Much less shocking then the images I saw in the magazine. I asked Alex again, are you sure you want to see what I look like. She reassured me again, yes. I slowly took my hands off my breasts and watched her face. Her reaction that I was hoping for was... nothing. She said they look normal except for the scars and you don't have a nipple. I tried to read her face but she seemed fine. I just hope this image is something that if she ever has to come to the decision of having a mastectomy, she will be OK with it. Once I am completely done I will show her once again, just to reassure her I am normal and if she ever has to make a decision to have a mastectomy she could look like me, as she says, normal.
July 19, 2011
Adriamycin Cytoxan-My Summary after completing this regime.
June 16th, 2011 I had my last infusion of my 1st regime, Adriamycin Cytoxan. People were telling me it has cumulative side effects. Well I do think they were right. One whole week out I finally felt good. I was fighting nausea all the way out to a week from infusion. I tried various combinations but I could not get a handle on the nausea. Finally put a call into my nurse at the oncologists office. Her recommendation which I think was right, dehydration. We had some scorching 100 degree days. I was trying to keep up drinking water but I was beginning to hate the taste of water. I broke down and bought some Gatoraid drinks. Surprisingly it helped. Is this the answer to fighting the nausea? No, but dehydration can hinder your progress. After hydrating with electrolytes, the nausea finally disappeared 1 week from the infusion. There was some aches in my shoulders and neck so wondering if that is a side effect of the Neulasta shot I got on the Friday after. Took my Clariten D to see if that would help but it also seemed to have a cumulative effect.
So, to help you if your someone who is going to be doing this regimen, I am going to list the different side effects and how I dealt with them. I know I mentioned in early blogs what meds I was taking but I think that was all experimental and just trying to figure it out. Now that I'm done, I have a better idea of what has happened to me and what I did to cope with the side effects. As always, talk with your Dr. about specific questions about your care.
So, here we go..... hair... well I still do have some, shaved but I did not lose all my hair. It feels like my head is wet but it's just that I can feel the temperature change very easily. The hair is still growing Mohawk style on the head but I have lost my hair on my head everywhere else. I have my eyebrows which are really thinning. All that is left are the burly brows you normally have plucked or trimmed but it is something! Still have my eyelashes but they too have thinned. Really weird but I have the hair on my arms. It is very fine blond hair but I did not lose it. Shaving my legs once to twice a week but it again never really stopped growing but simply slowed. The hair "down there" has really thinned out, I mean really. Haha who knew I would be sharing something so intimate with the world! I have to laugh to myself because that was one of my questions when I started all this, do I lose my hair "down there"? Some of the silly things that your concerned about. It is a new look for me ;-)
The nurses had said you will lose your hair after the 2nd AC infusion. I started the process of cutting my hair shorter to prepare my 4 kids to what was coming. A day after the 2nd infusion I buzz shaved my head. I was shedding like a cat but still had hair. Shortly after, I shaved it off. The tiny hairs were itchy for me. I think if I had not done this and left it long, there would be an endless pieces of hair on my shoulders coming out. In the end it did seem as if I lost all my hair on the sides of my head but not the top. As of now, 1 week after my first Taxol infusion, my hair is growing back.....very slowly.
I have been neglecting my homeopathic items. Trying my best but the thought just makes me wousy. I do have to say, after every chemo I would have problems with my throat. I started putting the caster oil on my throat before bed and it really seems to help. Weird. I've been trying to drink the veggie juice but again the thought makes me nausea. Do I think the homeopathic meds helped me? I really don't know. It is such an unchartered area that I do take some vitamins but other things I have stopped.
Eyes. My eyes are watery in the morning. Have no idea why but it is at it's worst in the morning or if it becomes really bright outside. When I do cry, which is not too often now, my tears just flow. They feel different. Can't explain it but it's like the flow is faster.
Constipation. If someone would have just warned me more about how bad it gets, especially with all the nausea meds. It has caused some severe issues with hemorrhoids. Not a pleasant subject but someone has to put the info out there. If I can help someone through this symptom, great. My advice take stool softeners starting a couple days before the infusion. Once the meds hit you, you have a head start on keeping your system moving. Your body will have a difficult time of it trying to heal once you have the hemorrhoids. If it gets really bad, I used Milk of Magnisum. That got the pipes moving.
Nausea. I started meds a couple days ahead of the infusion. First med was the Ativan. Day of I would get infusion of various neuas meds one being Emend. As soon as I got home I started the Ondansetron for nausea as well. I would take each morning my Emend for 2 days after the infusion. The whole time I would continue the parade of nausea meds; Ativan and Ondansetron. All of these kept the nausea under control. I continued all these through until Sunday night then I would wean myself one by one from them (the Emend was only used the 2 days after the infusion). I still use the Ativan to help me sleep at night. I did try the ginger and ginger ale but the taste just made me feel sick.
Bone Pain/Neulasta. I would receive the Neulasta shot the day after the infusion. It was suggested by the oncologist to take Clariten D to help with the bone pain. Again I would start a day or two ahead of infusion so the meds were already absorbed in my body. It seemed to help but I still did get achy starting on Friday night. The aches would last until Sunday night but each infusion the aches lasted longer.
Mouth Sores. I did get a couple but I gurgled with salt water and/or the Biotene mouthwash. I was very careful right before and after infusion about the types of food I ate. No citric acid or any other foods that could irritate my mouth. This was not a problem for me.
Sore throat/hurting ears. My throat about 36 hours after infusion would hurt like a sore throat. It would then move into my ears like an ear ache. The oncologist suggested using Musinex to help drain the fluid from my ears. I used it a couple times and it seemed to help. I also used the Casper Oil at night. I would rub it on my throat and under my ears. Really weird but it was cleared up the next day.
Sores/scratches that don't heal. This was a problem. I would get ingrown hairs on my legs since my hair was growing at such a slow pace. When I would notice a scratch or ingrown hair I would use Neosporin to help my body fight the infection. Again, nothing serious developed.
Depression. Well yea...your taking chemo to fight off a cancer reoccurance. Is it depressing? Yes. I did try to keep myself happy with positive attitude and joked around alot but sometimes it's just too much to handle and you break down. You have a good cry or I should say, you sob because your scared and overwhelmed about what might and is happening to you. Let it out, is all I can say. It helps. If you reach a point where you can not pull yourself out of the depression, seek help. There are many support groups to help you. Your local hospital or American Cancer Society is probably a good starting point.
Chemo Brain. This is a tricky one. Those of my friends know I am just a scattered kinda person. Have I noticed a change? Yes. Especially when I read my blogs. I am missing words or my writings don't make sense. I have always forgotten things; car keys, where I put my purse, etc so I don't know if it is chemo brain. I do "words with friends" with strangers to help keep me attentive. I also keep score at the water polo games. I find if I keep "the book" as it is called, it also helps me. Things happen so fast in the game of waterpolo that you have to pay attention when you record the events; cap numbers, times, team color, goals, fouls, exclusions, etc. I don't do the official book but I keep my own version.
People ask, what does chemo feel like? Well, it feels like your worst hangover coupled with your worst flu. My first infusion was the worst. Second much better, Third was harder to come back to life and the last regime just took forever to feel better again. The side effects last a few days after infusion and then your normal. You do tire much easier but try to keep your exercise up. It seems to help. Food aversions are a lot stronger but your body just guides you. All I can say is, you can do it. Think positive.
So, to help you if your someone who is going to be doing this regimen, I am going to list the different side effects and how I dealt with them. I know I mentioned in early blogs what meds I was taking but I think that was all experimental and just trying to figure it out. Now that I'm done, I have a better idea of what has happened to me and what I did to cope with the side effects. As always, talk with your Dr. about specific questions about your care.
So, here we go..... hair... well I still do have some, shaved but I did not lose all my hair. It feels like my head is wet but it's just that I can feel the temperature change very easily. The hair is still growing Mohawk style on the head but I have lost my hair on my head everywhere else. I have my eyebrows which are really thinning. All that is left are the burly brows you normally have plucked or trimmed but it is something! Still have my eyelashes but they too have thinned. Really weird but I have the hair on my arms. It is very fine blond hair but I did not lose it. Shaving my legs once to twice a week but it again never really stopped growing but simply slowed. The hair "down there" has really thinned out, I mean really. Haha who knew I would be sharing something so intimate with the world! I have to laugh to myself because that was one of my questions when I started all this, do I lose my hair "down there"? Some of the silly things that your concerned about. It is a new look for me ;-)
The nurses had said you will lose your hair after the 2nd AC infusion. I started the process of cutting my hair shorter to prepare my 4 kids to what was coming. A day after the 2nd infusion I buzz shaved my head. I was shedding like a cat but still had hair. Shortly after, I shaved it off. The tiny hairs were itchy for me. I think if I had not done this and left it long, there would be an endless pieces of hair on my shoulders coming out. In the end it did seem as if I lost all my hair on the sides of my head but not the top. As of now, 1 week after my first Taxol infusion, my hair is growing back.....very slowly.
I have been neglecting my homeopathic items. Trying my best but the thought just makes me wousy. I do have to say, after every chemo I would have problems with my throat. I started putting the caster oil on my throat before bed and it really seems to help. Weird. I've been trying to drink the veggie juice but again the thought makes me nausea. Do I think the homeopathic meds helped me? I really don't know. It is such an unchartered area that I do take some vitamins but other things I have stopped.
Eyes. My eyes are watery in the morning. Have no idea why but it is at it's worst in the morning or if it becomes really bright outside. When I do cry, which is not too often now, my tears just flow. They feel different. Can't explain it but it's like the flow is faster.
Constipation. If someone would have just warned me more about how bad it gets, especially with all the nausea meds. It has caused some severe issues with hemorrhoids. Not a pleasant subject but someone has to put the info out there. If I can help someone through this symptom, great. My advice take stool softeners starting a couple days before the infusion. Once the meds hit you, you have a head start on keeping your system moving. Your body will have a difficult time of it trying to heal once you have the hemorrhoids. If it gets really bad, I used Milk of Magnisum. That got the pipes moving.
Nausea. I started meds a couple days ahead of the infusion. First med was the Ativan. Day of I would get infusion of various neuas meds one being Emend. As soon as I got home I started the Ondansetron for nausea as well. I would take each morning my Emend for 2 days after the infusion. The whole time I would continue the parade of nausea meds; Ativan and Ondansetron. All of these kept the nausea under control. I continued all these through until Sunday night then I would wean myself one by one from them (the Emend was only used the 2 days after the infusion). I still use the Ativan to help me sleep at night. I did try the ginger and ginger ale but the taste just made me feel sick.
Bone Pain/Neulasta. I would receive the Neulasta shot the day after the infusion. It was suggested by the oncologist to take Clariten D to help with the bone pain. Again I would start a day or two ahead of infusion so the meds were already absorbed in my body. It seemed to help but I still did get achy starting on Friday night. The aches would last until Sunday night but each infusion the aches lasted longer.
Mouth Sores. I did get a couple but I gurgled with salt water and/or the Biotene mouthwash. I was very careful right before and after infusion about the types of food I ate. No citric acid or any other foods that could irritate my mouth. This was not a problem for me.
Sore throat/hurting ears. My throat about 36 hours after infusion would hurt like a sore throat. It would then move into my ears like an ear ache. The oncologist suggested using Musinex to help drain the fluid from my ears. I used it a couple times and it seemed to help. I also used the Casper Oil at night. I would rub it on my throat and under my ears. Really weird but it was cleared up the next day.
Sores/scratches that don't heal. This was a problem. I would get ingrown hairs on my legs since my hair was growing at such a slow pace. When I would notice a scratch or ingrown hair I would use Neosporin to help my body fight the infection. Again, nothing serious developed.
Depression. Well yea...your taking chemo to fight off a cancer reoccurance. Is it depressing? Yes. I did try to keep myself happy with positive attitude and joked around alot but sometimes it's just too much to handle and you break down. You have a good cry or I should say, you sob because your scared and overwhelmed about what might and is happening to you. Let it out, is all I can say. It helps. If you reach a point where you can not pull yourself out of the depression, seek help. There are many support groups to help you. Your local hospital or American Cancer Society is probably a good starting point.
Chemo Brain. This is a tricky one. Those of my friends know I am just a scattered kinda person. Have I noticed a change? Yes. Especially when I read my blogs. I am missing words or my writings don't make sense. I have always forgotten things; car keys, where I put my purse, etc so I don't know if it is chemo brain. I do "words with friends" with strangers to help keep me attentive. I also keep score at the water polo games. I find if I keep "the book" as it is called, it also helps me. Things happen so fast in the game of waterpolo that you have to pay attention when you record the events; cap numbers, times, team color, goals, fouls, exclusions, etc. I don't do the official book but I keep my own version.
People ask, what does chemo feel like? Well, it feels like your worst hangover coupled with your worst flu. My first infusion was the worst. Second much better, Third was harder to come back to life and the last regime just took forever to feel better again. The side effects last a few days after infusion and then your normal. You do tire much easier but try to keep your exercise up. It seems to help. Food aversions are a lot stronger but your body just guides you. All I can say is, you can do it. Think positive.
July 17, 2011
Taxol #2, You are so much more friendlier on our 2nd date!
Hmmm, where did I leave off? Hysterectomy, fibroids, ovaries? I received a call confirming that I had fibroids in my uterus. Something that many women have but never know since they really don't do anything unless they grow. When they grow is when there are concerns. Fibroids can cause heavy bleeding during your period. They can also cause severe cramping. So lucky me, during this journey I have developed fibroids. F*ck! One more thing...add it to my gall stones. My OBGYN suggested I get a hysterectomy and while at it, remove my ovaries too.
Well you know me, research, research, research. There are 2 options: a hysterectomy and removal of the fibroids, called myomectomy. The removal of the uterus, a hysterectomy, I can do and seems as if there are little side effects other then the surgery itself. Then again, the surgery is minimally invasive unlike years before. Please see my link above for more info. There are a few different ways your uterus can be removed. I keep envisioning the small doorway and the piece of furniture that's too big and can't fit through, you just keep banging it against the frame....how do they remove your uterus if they don't slice you open? It is done using a procedure called laparoscopy . Anyway...check the links for more info. This is a topic I will cover at a later time because there is a much greater decision involved, removal of the ovaries and reduction of estrogen. Isn't that what we want? Yes, but it may come at a cost to me later in life, heart issues, bone loss, increased chance of demenia all because of the abrupt removal of estrogen from my body.
I spoke with Dr. Gottlieb (my breast cancer Dr.) about all this. He had mentioned months ago there was a possibility that I could make the decision to remove my ovaries. The whole purpose is to reduce the estrogen in my body since the breast cancer cells feed off of the estrogen. He said this is something for me to consider but right now I needed to get through chemo, then radiation. At the end of that is when I should consider the procedure. Just a reminder...I still have my reconstruction surgery ahead of me too. So, this is not a decision I'm going to worry myself with right now. There really is nothing we can now since I'm in the middle of chemo. I need to be consistent with the treatments to provide the best benefit for me.
So, what was causing this intense abdominal/unterian pain during my first Taxol? This is the speculation from my oncologist. First off, I was the 1st patient of his that ever had these type of side effects I explained to him-lucky me. What he suspects is that my body may have been about to start my menstrual cycle. I have not had a period for years since I had an abalation of my uterus a few years ago to lessen my heavy periods. Once I had this procedure, I really had no period and could never tell if I had one. Anyway, the Dr. thinks my body was going through the actions of having a period when the Taxol was administered. Taxol can cause muscle ache and since my uterus is a large muscle and was "trying" to create my period, the Taxol zeroed in on my uterus, causing the labor like pains I felt all weekend. One week after the infusion, I did have menstrual spotting for a couple hours and then I was done. This was the first time in years I had any indication of a period. So is the Dr. right? I don't know but I am on my 2nd infusion and I have no uterine pain.
So. here we are, my 2nd infusion of Taxol. Can I say, what a difference! I am functioning. I received my infusion Thursday am. Thursday afternoon I tend to nap since I have the Benadryl in me still. Thursday night I spent awake I think because of the steroids. Felt pretty good all day Friday, even had friends over on Friday night. A few aches and pains but that was it. No nausea, thank goodness. I have been continuing the Clariten D for the Neulesta shot ( which I now receive on Thursday). I take Advil for the muscle cramping. I still take the Ativan to help with any nausea that might be hiding and to help keep me relaxed. I also continue to take the vitamins, L-Glutamine, and all the other stuff. Taxol is very tolerable. Much better then the AC. It is Sunday morning and I have a lot of aches and pains, mainly in my pelvis. I spent a restless night with hot flashes and some aches. I have a headache that comes and goes but overall it is tolerable. I don't feel like heading out to any parties and spending the time shopping with my daughter (college dorm shopping is right around the corner) but I'm good. I just want to stay close to home in case I want to lay down. Here's the scary thing, the next infusion I might have the same side effects as my first infusion. Crossing my fingers I don't because that was awful. Seems my hair is growing also! Very slowly but growing. So doing Ok.
So many things have been happening in our community with friends or acquaintances that are being diagnosed with cancer. I read their CaringBridge that chronicles what their experience is. CaringBridge is similar to a blog but an easier set up. All the updates with everyone seem positive. We have someone who is fighting leukemia again for the 2nd time in a year. We have someone who is fighting stage 4 lung cancer and is trying to prolong his life with chemo and finally another person who had throat cancer that has spread to his lung and bone. He is the person who I mentioned has stopped all traditional medicine. He is following a certain diet, drinking a certain type of tea, exercising. I have to admit it is curiosity that I follow his journal. He is due for a scan. I wonder if his actions are working. I admit I have started to "fall off" the healthy wagon. I rarely drink alcohol, maybe a glass every 3 weeks. There is no desire to. I have started to have dessert again. I'll eat one of my cookies but that's about it. Again no desire to eat sweet things. I don't drink milk anymore. I don't eat red meat at all. I eat chicken and fish, once in a while maybe some pork. I eat alot of almonds, beans, veggies, whole wheat pasta. I'm just trying to eat healthier...but then I ate healthy before. Exercise, 2X a week I do Pilates. I try to get out and walk briskly but I'm just not full of energy. I think about it though!
I can see the end of this part of my journey. 2 more infusions and then I'm done. I will start radiation within 2 weeks after chemo. Probably about 5 weeks of radiation, 5X's a week. I'll rest for a few weeks then have the transfer surgery, expanders out, implants in....but that might be delayed also. I may have the hysterectomy first then reconstruction. Who knows.
I don't think of getting cancer again. I'm pretty sure that part of my life is over. Thinking positive is so important but I just know it will not revisit me. I'm looking forward to moving forward with life. There is so much to discover!
Well you know me, research, research, research. There are 2 options: a hysterectomy and removal of the fibroids, called myomectomy. The removal of the uterus, a hysterectomy, I can do and seems as if there are little side effects other then the surgery itself. Then again, the surgery is minimally invasive unlike years before. Please see my link above for more info. There are a few different ways your uterus can be removed. I keep envisioning the small doorway and the piece of furniture that's too big and can't fit through, you just keep banging it against the frame....how do they remove your uterus if they don't slice you open? It is done using a procedure called laparoscopy . Anyway...check the links for more info. This is a topic I will cover at a later time because there is a much greater decision involved, removal of the ovaries and reduction of estrogen. Isn't that what we want? Yes, but it may come at a cost to me later in life, heart issues, bone loss, increased chance of demenia all because of the abrupt removal of estrogen from my body.
I spoke with Dr. Gottlieb (my breast cancer Dr.) about all this. He had mentioned months ago there was a possibility that I could make the decision to remove my ovaries. The whole purpose is to reduce the estrogen in my body since the breast cancer cells feed off of the estrogen. He said this is something for me to consider but right now I needed to get through chemo, then radiation. At the end of that is when I should consider the procedure. Just a reminder...I still have my reconstruction surgery ahead of me too. So, this is not a decision I'm going to worry myself with right now. There really is nothing we can now since I'm in the middle of chemo. I need to be consistent with the treatments to provide the best benefit for me.
So, what was causing this intense abdominal/unterian pain during my first Taxol? This is the speculation from my oncologist. First off, I was the 1st patient of his that ever had these type of side effects I explained to him-lucky me. What he suspects is that my body may have been about to start my menstrual cycle. I have not had a period for years since I had an abalation of my uterus a few years ago to lessen my heavy periods. Once I had this procedure, I really had no period and could never tell if I had one. Anyway, the Dr. thinks my body was going through the actions of having a period when the Taxol was administered. Taxol can cause muscle ache and since my uterus is a large muscle and was "trying" to create my period, the Taxol zeroed in on my uterus, causing the labor like pains I felt all weekend. One week after the infusion, I did have menstrual spotting for a couple hours and then I was done. This was the first time in years I had any indication of a period. So is the Dr. right? I don't know but I am on my 2nd infusion and I have no uterine pain.
So. here we are, my 2nd infusion of Taxol. Can I say, what a difference! I am functioning. I received my infusion Thursday am. Thursday afternoon I tend to nap since I have the Benadryl in me still. Thursday night I spent awake I think because of the steroids. Felt pretty good all day Friday, even had friends over on Friday night. A few aches and pains but that was it. No nausea, thank goodness. I have been continuing the Clariten D for the Neulesta shot ( which I now receive on Thursday). I take Advil for the muscle cramping. I still take the Ativan to help with any nausea that might be hiding and to help keep me relaxed. I also continue to take the vitamins, L-Glutamine, and all the other stuff. Taxol is very tolerable. Much better then the AC. It is Sunday morning and I have a lot of aches and pains, mainly in my pelvis. I spent a restless night with hot flashes and some aches. I have a headache that comes and goes but overall it is tolerable. I don't feel like heading out to any parties and spending the time shopping with my daughter (college dorm shopping is right around the corner) but I'm good. I just want to stay close to home in case I want to lay down. Here's the scary thing, the next infusion I might have the same side effects as my first infusion. Crossing my fingers I don't because that was awful. Seems my hair is growing also! Very slowly but growing. So doing Ok.
So many things have been happening in our community with friends or acquaintances that are being diagnosed with cancer. I read their CaringBridge that chronicles what their experience is. CaringBridge is similar to a blog but an easier set up. All the updates with everyone seem positive. We have someone who is fighting leukemia again for the 2nd time in a year. We have someone who is fighting stage 4 lung cancer and is trying to prolong his life with chemo and finally another person who had throat cancer that has spread to his lung and bone. He is the person who I mentioned has stopped all traditional medicine. He is following a certain diet, drinking a certain type of tea, exercising. I have to admit it is curiosity that I follow his journal. He is due for a scan. I wonder if his actions are working. I admit I have started to "fall off" the healthy wagon. I rarely drink alcohol, maybe a glass every 3 weeks. There is no desire to. I have started to have dessert again. I'll eat one of my cookies but that's about it. Again no desire to eat sweet things. I don't drink milk anymore. I don't eat red meat at all. I eat chicken and fish, once in a while maybe some pork. I eat alot of almonds, beans, veggies, whole wheat pasta. I'm just trying to eat healthier...but then I ate healthy before. Exercise, 2X a week I do Pilates. I try to get out and walk briskly but I'm just not full of energy. I think about it though!
I can see the end of this part of my journey. 2 more infusions and then I'm done. I will start radiation within 2 weeks after chemo. Probably about 5 weeks of radiation, 5X's a week. I'll rest for a few weeks then have the transfer surgery, expanders out, implants in....but that might be delayed also. I may have the hysterectomy first then reconstruction. Who knows.
I don't think of getting cancer again. I'm pretty sure that part of my life is over. Thinking positive is so important but I just know it will not revisit me. I'm looking forward to moving forward with life. There is so much to discover!
July 3, 2011
Hello Taxol...you are a pain/update/update #2
Had my first infusion of Taxol last Thursday, June 30. As with anything new, your nervous as to what is going to happen. With this infusion they started me out with the Benadryl. My nurse mentioned you might feel a bit sleepy. Yea, within 15 minutes I was dozing away! My time frame for this infusion will be about 4 hours long. I will receive hydration, a steroid, Benadryl, an anti nausea med, and finally the Taxol. Most of the 4 hours will be for the Taxol infusion. The nurses watch me closely to see if I have an allergic reaction and that is why the Taxol is given to me so slowly. Everything went fine other then I caught myself snoring and woke myself up with a snort-embarrassing! The other infusions should average 3 to 4 hours. I also get my Neulasta shot the same day now instead of coming back the following day. Still feels the same....it hurts! Made it home but was so tired I fell straight to sleep instead of going to my Pilates class. I had read somewhere it was very important to exercise or stretch the muscles with the Taxol. Unfortunately, exercise had to wait because a nap had a much stronger pull on me. So Thursday afternoon and night felt fine. No nausea. Friday still felt good. Woke up and had some extra energy and cleaned out a closet downstairs. I was thinking to myself, hey this isn't bad. I went to Pilates class. I had some aches but nothing bad. I thought if this is all I'm going to feel, this is not bad. I can do it! I see the light at the end of the tunnel. Well...things went downhill from there, again.
I could feel the Neulasta shot taking effect. My spine, neck, and shoulders began the ache. Frank spent Friday night rubbing them. It wasn't as bad as previous times but still uncomfortable. What I did discover was, there really was no nausea-yea! I can deal with the pain but the constant feel of nausea literally makes me sick and not able to function. Pain on the other hand, i can somewhat block and do stuff.
As I awoke Saturday morning, I realized it was gong to be a very different ride with the Taxol. I had pain that seemed to center in my pelvis area. It wasn't necessarily my pelvis/hips but it feels like a giant ball inside of me, like my internal organs are just aching. I took Tylenol but the pain seems to have intensified and finally broke down and took the Oxycodene that was prescribed for my double mastectomy. It really doesn't seem to help much or if it does, it helps for about an hour then the throbbing starts again. I haven't had any of the tingling in my joints, hands, or feet yet but the pain really hurts. Sometimes it feels like some has jabbed me with a sharp stick in one spot.
Hoping because this is my first dose of Taxol this will be the worst I feel...kinda like the AC. The first infusion was hell so maybe the Taxol will be like that too? I just need to work thru it. So here I am Sunday morning. I still have this pain in my internal organs and sometimes my hips. I walked around one of the local parks this morning with Frank. I had to walk like I was walking on egg shells. If I walked too fast my hips and pelvis start to ache. Again I'm functioning and no nausea. I do keep wondering is this normal? Is there something wrong with me? I googled all my aches and pains and it seems it is normal. Big question again, why doesn't the Dr.'s office prepare you better? My only hint that the pain might be this bad was when I asked the nurse, "so if the pain is really bad, can I take my Oxycodone?" Her response, "oh yea, by all means...take what you need to get through the pain". Yikes....that should have been a big hint.
I am taking a number of vitamins to help me through the Taxol and lessen the neuropathy side effects; B6 (50mg twice daily), B12 (1000mcg), Alpha lipoic Acid (600mg daily), Vit E (300iu), and L-Glutamine 30g orally. Yes the L-Glutamine is alot! I had started taking it (maybe 10g) leading up to the Taxol to have my body ready but 30g is alot! Can't hide all that in a shake. I'm to take the 30g for 4 days following the Taxol. So trying my best to do all this.
4th of July weekend and just spending it resting. It's over 100 degrees here so I'm keeping up on my liquids. A bit of a bummer, life is happening around me and I'm stuck in neutral. I am happy to say I only need to do 3 more infusions then I'm done! I can't tell you how excited I am. Crossing my fingers I won't need radiation but I know deep down I will....so again more time waiting. Then the surgery to swap out my expander to implants. btw...the scars are healing REALLY real. I haven't been putting any type of scar medicine on but everything is healing and fading. There are some areas that are a little red but for the most part, the scars look good, or at least as good as they can for having had a double mastectomy in March.
Update July 5th/
I could feel the Neulasta shot taking effect. My spine, neck, and shoulders began the ache. Frank spent Friday night rubbing them. It wasn't as bad as previous times but still uncomfortable. What I did discover was, there really was no nausea-yea! I can deal with the pain but the constant feel of nausea literally makes me sick and not able to function. Pain on the other hand, i can somewhat block and do stuff.
As I awoke Saturday morning, I realized it was gong to be a very different ride with the Taxol. I had pain that seemed to center in my pelvis area. It wasn't necessarily my pelvis/hips but it feels like a giant ball inside of me, like my internal organs are just aching. I took Tylenol but the pain seems to have intensified and finally broke down and took the Oxycodene that was prescribed for my double mastectomy. It really doesn't seem to help much or if it does, it helps for about an hour then the throbbing starts again. I haven't had any of the tingling in my joints, hands, or feet yet but the pain really hurts. Sometimes it feels like some has jabbed me with a sharp stick in one spot.
Hoping because this is my first dose of Taxol this will be the worst I feel...kinda like the AC. The first infusion was hell so maybe the Taxol will be like that too? I just need to work thru it. So here I am Sunday morning. I still have this pain in my internal organs and sometimes my hips. I walked around one of the local parks this morning with Frank. I had to walk like I was walking on egg shells. If I walked too fast my hips and pelvis start to ache. Again I'm functioning and no nausea. I do keep wondering is this normal? Is there something wrong with me? I googled all my aches and pains and it seems it is normal. Big question again, why doesn't the Dr.'s office prepare you better? My only hint that the pain might be this bad was when I asked the nurse, "so if the pain is really bad, can I take my Oxycodone?" Her response, "oh yea, by all means...take what you need to get through the pain". Yikes....that should have been a big hint.
I am taking a number of vitamins to help me through the Taxol and lessen the neuropathy side effects; B6 (50mg twice daily), B12 (1000mcg), Alpha lipoic Acid (600mg daily), Vit E (300iu), and L-Glutamine 30g orally. Yes the L-Glutamine is alot! I had started taking it (maybe 10g) leading up to the Taxol to have my body ready but 30g is alot! Can't hide all that in a shake. I'm to take the 30g for 4 days following the Taxol. So trying my best to do all this.
4th of July weekend and just spending it resting. It's over 100 degrees here so I'm keeping up on my liquids. A bit of a bummer, life is happening around me and I'm stuck in neutral. I am happy to say I only need to do 3 more infusions then I'm done! I can't tell you how excited I am. Crossing my fingers I won't need radiation but I know deep down I will....so again more time waiting. Then the surgery to swap out my expander to implants. btw...the scars are healing REALLY real. I haven't been putting any type of scar medicine on but everything is healing and fading. There are some areas that are a little red but for the most part, the scars look good, or at least as good as they can for having had a double mastectomy in March.
Update July 5th/
I'm scheduled for an ultrasound tomorrow to investigate what is going on. I have been given the OK to use Advil for pain relief. I wasn't allowed to earlier because my platelets were so low and Advil is a blood thinner. The Advil has helped but the pain is still there.... over time it seems to be getting better. I can't imagine there being anything wrong but hoping for the best because I really don't want more bad news or anything to delay me getting through all this stuff. I just want to get it done and move on.
JULY 8-Friday
Had my ultrasound for my abdominal area and pelvis. Took about an hour because I had to drink more water...I swear I beginning to really hate water. I recognized the gal who performed the ultrasound, she might have even been the gal who found this cancer. She recognized me as well, even without hair. We chatted it up during the whole appointment. At the end I asked, so when do I get the results? She gave the standard answer the tech's give. The Dr. will call you once it has been read and usually that is within a day or two. I asked, if there is something urgent, does someone wave a flag to have a Dr. read it? Her response, yes they do. So against protocol, I'm sure, she said, in your case it will just be a standard follow up call, no urgency.
So here I sit Friday morning, waiting still for my results. No phone call but probably today. So what is causing my pain (which has subsided)? I'm guessing it was my ovaries. Maybe my body was fighting Taxol that is trying to put my body into menopause. Who knows but I hope next Taxol it does not happen again.
JULY 11-Monday 2nd UPDATE
Got the call from the Dr. as to what they found from the ultrasound. Two things could have caused the pain I experienced. 1st...possibly gall stones. Yes, gall stones. I knew I had gall stones, thanks to my CAT scan a months ago. So, maybe I ate something before the infusion and the chemo triggered a gall stone attack. Really? I couldn't believe what my chemo nurse was telling me. It did not seem correct. 2nd possibility....which was news to me, I have fibroids on my uterus. Fibroids are beign cysts that grow on your uterus lining. They can become large and cause cramping and spotting. Mine are small but again, maybe the chemo triggered the cramping that fibroids can cause. These are common among women of a certain age and are not cancerous. Yea! So this sounds more right as to where the pain was coming from. What am I going to do about this? I have been referred to my gyno for more poking. If they become worse a hysterectomy could be in my future. Actually a hysterectomy could be in my future no matter what since I am trying to remove as much estrogen from my body. I can also just have them removed but it's not a quick thing. So for now, I just get super strong pain relievers for the next infusion and hope for the best.
JULY 8-Friday
Had my ultrasound for my abdominal area and pelvis. Took about an hour because I had to drink more water...I swear I beginning to really hate water. I recognized the gal who performed the ultrasound, she might have even been the gal who found this cancer. She recognized me as well, even without hair. We chatted it up during the whole appointment. At the end I asked, so when do I get the results? She gave the standard answer the tech's give. The Dr. will call you once it has been read and usually that is within a day or two. I asked, if there is something urgent, does someone wave a flag to have a Dr. read it? Her response, yes they do. So against protocol, I'm sure, she said, in your case it will just be a standard follow up call, no urgency.
So here I sit Friday morning, waiting still for my results. No phone call but probably today. So what is causing my pain (which has subsided)? I'm guessing it was my ovaries. Maybe my body was fighting Taxol that is trying to put my body into menopause. Who knows but I hope next Taxol it does not happen again.
JULY 11-Monday 2nd UPDATE
Got the call from the Dr. as to what they found from the ultrasound. Two things could have caused the pain I experienced. 1st...possibly gall stones. Yes, gall stones. I knew I had gall stones, thanks to my CAT scan a months ago. So, maybe I ate something before the infusion and the chemo triggered a gall stone attack. Really? I couldn't believe what my chemo nurse was telling me. It did not seem correct. 2nd possibility....which was news to me, I have fibroids on my uterus. Fibroids are beign cysts that grow on your uterus lining. They can become large and cause cramping and spotting. Mine are small but again, maybe the chemo triggered the cramping that fibroids can cause. These are common among women of a certain age and are not cancerous. Yea! So this sounds more right as to where the pain was coming from. What am I going to do about this? I have been referred to my gyno for more poking. If they become worse a hysterectomy could be in my future. Actually a hysterectomy could be in my future no matter what since I am trying to remove as much estrogen from my body. I can also just have them removed but it's not a quick thing. So for now, I just get super strong pain relievers for the next infusion and hope for the best.
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