Yesterday was my first re-check by my doctor after three months chemo-free. The technical update is CA125 elevated by 3, no need for concern were the first words I heard. After my exam, I was given the "everything seems good" and we are still clinically in a 'good place'. Since I am currently feeling good, with the exception of a few on-going chemo side effects, we will continue on another 3-month no chemo cycle. What I learned yesterday is that even though the chemo drugs are out of my system, the after effects can remain for quite a while. She did not seem overly concerned about mine, just instructed me to keep an eye on things and call her if anything changes. I can do that! I must say that there is not one part of me that misses those 6 to 7 hour days of infusion. As wonderful as the chemo nurses are, and as comfortable as they make it for all of us there, it's really not a great way to spend the day. There has been a positive to those days, however, and that is that I met some wonderful people there. People who know what it's like to be me, who have and are still going through it. People with whom I put no disguise on for. That doesn't mean that it's all doom and gloom with them. Quite the opposite. We talk about things other than cancer, we tell stories about our lives, and we even laugh. But if I happen to be having a day where I'm feeling scared, or down, or just tired of it all, I don't have to hide that. My friends just nod their heads in understanding because they've all been there. That comforts me, because there are times when I'm with 'normal' people that I feel like I'm on the outside looking in. And I feel an obligation to appear upbeat and feeling good so as not to worry people. Sometimes, that is exhausting. This disease can do that.
But, enough of that. For now, the waters are still, and if there was a beach nearby I'd roll up my pants, take off my shoes and enjoy the feel of the gentle sea washing up and over my feet. But since this is the desert I'll just settle for enjoying the beautiful spring desert blooms, the lovely days and the beautiful sunsets over the mountains. And I'll thank God for the opportunity to do this.
Tuesday, March 27, 2012
Saturday, March 24, 2012
The Journey, to date.
So what road have I traveled this past year? I must admit that while it has had its difficult days, for the most part I've managed to stay at work (with limited hours) and take a trip to MN to see my beautiful daughter get married. The highlight of my year, I must add. There is nothing more satisfying than seeing your child happily embarking on a new life with a companion who will hopefully be at her side through thick and thin. Thank you, son-in-law!
But, I digress (however in a good way!). To begin, my gynecologist/oncologist (which, by the way, is a must should this dark visitor ever come knocking on your door) recommended we do chemo prior to considering therapy. I did not seek a second opinion at that time because I had absolutely no knowledge of this beast, and would have had no way to know which recommendation would better serve me. I felt it would only add to my confusion and leave me stuck with the "what if I picked the wrong one" question circling in my head. I already had enough of those. What I really needed at the time was a plan and the ability to start acting on it. Not more delays. And so we began.
Chemo started the following week, after more blood work and a CT scan. I also had a port inserted under my skin just under the collar bone on the left side to avoid contstant "good vein" searching. That has been terrific. My chemo consisted of pre-infusion of saline, steroids, and anti-nausea meds. After that we went with the big guns: carboplatin, taxol. This process took 6 -7 hours, every third Monday. During that time were more blood tests, measuring both white and red blood cell countn (and various other counts) and my CA125, the ovarian cancer blood marker. More on that later. My first infusion was the most uncomfortable, side effect wise. Luckily my daughter was here with me and helped me deal with it. Again, she was the blessing she's always been. Subsequent chemos did bring side effects, but I learned to manage them (the nausea, bowel problems [enough said]) with the right meds. After my sixth round, another drug was added: avastin, which is known for its ability to stop blood flow to the dastardly cells. It also aids in draining the fluid which collects in the omentum (the lining around the stomach, hence the bloating) and around the lungs (which makes breathing difficult). And yes, I had both of those things. OVCA is known for its ability to metastasize to the liver, lungs, bowels, lymph nodes, and evidently anything else it feels like visiting, with the formerly-mentioned the most likely. Avastin is powerful, gave me terrible headaches and left me so tired I could barely stay awake for more than 2 hours at a time. DID NOT LIKE. But I continued on with 5 additional sessions of it, which brought me to the first week in December. And except for chemo week, I kept working, which actually helped me to get out and feel normal again.
The week before Christmas I saw my gyn/onc for the result of my recent PET scan (a better, more thorough detector of rogue cells than a CT scan) and what I thought would be another round of chemo. Not to be! The PET scan showed all major organs to be clear and the blood work showed that my CA125 (see above) had dropped from its original reading of 3,000+ to 14. "Normal" is considered anything under 35. It was recommended we take a 3 month break from chemo to let the avastin get out of my system completely and to give my body a rest from the poison that had been dripping into me for 7 months.
Merry Christmas to me!
Monday I have my follow-up visit to see what my blood work shows, and to talk options and next steps. My weekend will be somewhat anxiety-ridden, which brings to mind another whole aspect of the disease; dealing with the emotional side of it. That I will leave for another post, at another time.
I am grateful for the love and support of my husband, family, and friends during this past year. And I grieve for those women who ride this train by themselves.
But, I digress (however in a good way!). To begin, my gynecologist/oncologist (which, by the way, is a must should this dark visitor ever come knocking on your door) recommended we do chemo prior to considering therapy. I did not seek a second opinion at that time because I had absolutely no knowledge of this beast, and would have had no way to know which recommendation would better serve me. I felt it would only add to my confusion and leave me stuck with the "what if I picked the wrong one" question circling in my head. I already had enough of those. What I really needed at the time was a plan and the ability to start acting on it. Not more delays. And so we began.
Chemo started the following week, after more blood work and a CT scan. I also had a port inserted under my skin just under the collar bone on the left side to avoid contstant "good vein" searching. That has been terrific. My chemo consisted of pre-infusion of saline, steroids, and anti-nausea meds. After that we went with the big guns: carboplatin, taxol. This process took 6 -7 hours, every third Monday. During that time were more blood tests, measuring both white and red blood cell countn (and various other counts) and my CA125, the ovarian cancer blood marker. More on that later. My first infusion was the most uncomfortable, side effect wise. Luckily my daughter was here with me and helped me deal with it. Again, she was the blessing she's always been. Subsequent chemos did bring side effects, but I learned to manage them (the nausea, bowel problems [enough said]) with the right meds. After my sixth round, another drug was added: avastin, which is known for its ability to stop blood flow to the dastardly cells. It also aids in draining the fluid which collects in the omentum (the lining around the stomach, hence the bloating) and around the lungs (which makes breathing difficult). And yes, I had both of those things. OVCA is known for its ability to metastasize to the liver, lungs, bowels, lymph nodes, and evidently anything else it feels like visiting, with the formerly-mentioned the most likely. Avastin is powerful, gave me terrible headaches and left me so tired I could barely stay awake for more than 2 hours at a time. DID NOT LIKE. But I continued on with 5 additional sessions of it, which brought me to the first week in December. And except for chemo week, I kept working, which actually helped me to get out and feel normal again.
The week before Christmas I saw my gyn/onc for the result of my recent PET scan (a better, more thorough detector of rogue cells than a CT scan) and what I thought would be another round of chemo. Not to be! The PET scan showed all major organs to be clear and the blood work showed that my CA125 (see above) had dropped from its original reading of 3,000+ to 14. "Normal" is considered anything under 35. It was recommended we take a 3 month break from chemo to let the avastin get out of my system completely and to give my body a rest from the poison that had been dripping into me for 7 months.
Merry Christmas to me!
Monday I have my follow-up visit to see what my blood work shows, and to talk options and next steps. My weekend will be somewhat anxiety-ridden, which brings to mind another whole aspect of the disease; dealing with the emotional side of it. That I will leave for another post, at another time.
I am grateful for the love and support of my husband, family, and friends during this past year. And I grieve for those women who ride this train by themselves.
Tuesday, March 20, 2012
Yes, really.
Hello to all who end up reading this blog. I created this two months ago, and haven't been able to post since I set it up. Not because I've been feeling sick, but I think mostly because I felt that if I wrote about it, then it would become real. Guess it finally hit me that it IS real, and now that I have faced that, I may as well write about it. People say journaling is therapeutic. We'll see.
My journey with this beast, which is my name for ovarian cancer, began in January, 2011. I just didn't feel right. And my stomach was bloated, as in "I look 7 months pregnant" bloated. I kept pointing that out, but nobody seemed all that concerned about it. After too -many-to-remember visits to my g.p., and a gastroenterologist, a colonoscopy, blood work, etc., I was given several diagnosis'. IBS, acid reflux, diverticulosis, stress, IBS, a hiatal hernia, stress, IBS, acid reflux, stress. You get the picture. I knew that what my body was exhibiting, and what I felt in my gut were two completely different things, but the docs didn't seem to be listening. I do believe my doctors were beginning to consider me a complete hypochondriac, which I actually even considered myself a few times. Until I went to the ER one night in extreme pain trying to pass a kidney stone. The ER doctor took one look at me (well, really at my stomach) and said "Whoa....let's get a cat scan here." Yay, someone was finally paying attention! And the result of that attention was "you have ovarian cancer, most likely stage IV." HUH? Even though I was dubious, really dubious, when the other docs kept telling me IBS, stress, etc........I never expected that diagnosis. The symptoms just didn't feel at all related to any 'female' disorder.
Thus the reason for this first post. Ladies, KNOW the symptoms of ovca: http://ovariancancer.jhmi.edu/symptoms.cfm If any of them persist for more than two weeks, see your doctor, take the list of the symptoms with you and make them prove to you it's NOT cancer. There is a wealth of "pink" information out there, but not much "teal" (the color for ovca) information. And while your chances of developing ovca are much slimmer than developing breast cancer, the former is much more difficult to diagnosis (a pap smear doesn't do it) and treat, and much more difficult to survive. So please, take a minute to know the symptoms, because there is no test for it, no billboards, no marathons (well, there are marathons, but unless you have the disease you're not likely to know about them). It is called the disease that whispers, and it definitely is that. Unfortunately, my story of diagnosis is not much different from thousands of other women with this disease, which is why the majority of those diagnosed with this are already in late stage.
I will probably post more later, but my main objective right now is to get the word out to as many women as I can. It really is that important.
~cat
My journey with this beast, which is my name for ovarian cancer, began in January, 2011. I just didn't feel right. And my stomach was bloated, as in "I look 7 months pregnant" bloated. I kept pointing that out, but nobody seemed all that concerned about it. After too -many-to-remember visits to my g.p., and a gastroenterologist, a colonoscopy, blood work, etc., I was given several diagnosis'. IBS, acid reflux, diverticulosis, stress, IBS, a hiatal hernia, stress, IBS, acid reflux, stress. You get the picture. I knew that what my body was exhibiting, and what I felt in my gut were two completely different things, but the docs didn't seem to be listening. I do believe my doctors were beginning to consider me a complete hypochondriac, which I actually even considered myself a few times. Until I went to the ER one night in extreme pain trying to pass a kidney stone. The ER doctor took one look at me (well, really at my stomach) and said "Whoa....let's get a cat scan here." Yay, someone was finally paying attention! And the result of that attention was "you have ovarian cancer, most likely stage IV." HUH? Even though I was dubious, really dubious, when the other docs kept telling me IBS, stress, etc........I never expected that diagnosis. The symptoms just didn't feel at all related to any 'female' disorder.
Thus the reason for this first post. Ladies, KNOW the symptoms of ovca: http://ovariancancer.jhmi.edu/symptoms.cfm If any of them persist for more than two weeks, see your doctor, take the list of the symptoms with you and make them prove to you it's NOT cancer. There is a wealth of "pink" information out there, but not much "teal" (the color for ovca) information. And while your chances of developing ovca are much slimmer than developing breast cancer, the former is much more difficult to diagnosis (a pap smear doesn't do it) and treat, and much more difficult to survive. So please, take a minute to know the symptoms, because there is no test for it, no billboards, no marathons (well, there are marathons, but unless you have the disease you're not likely to know about them). It is called the disease that whispers, and it definitely is that. Unfortunately, my story of diagnosis is not much different from thousands of other women with this disease, which is why the majority of those diagnosed with this are already in late stage.
I will probably post more later, but my main objective right now is to get the word out to as many women as I can. It really is that important.
~cat
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