More good news. I have not been nauseated from the new chemotherapy drug I received yesterday. What a relief! I was so hoping that this would be the case. I could not fathom the idea of being sick for 12 weeks with no break in between treatments. Thank you, God!
This evening, I have been reflecting on the last few months. As I looked at my body in the mirror, I thought "my body is a carved up mess now". Two surgeries and three incision scars, two of which are quite prominent, hardly any hair on my body. But I am not my breasts. I am not my hair. I am not cancer. I am ME.
I am not the same "ME" that I was before the evening of November 8, 2008. That was the night that I felt the lump in my breast and I KNEW. The next hours, days, and weeks were filled with sheer terror. How does a Mom tell her daughters that she has breast cancer? Two of those precious girls are away at college and had to hear the news over the telephone. What wrenching calls to make, and, I am sure, even more wrenching to receive. Telling our third daughter, only 12 at the time, was just as difficult. Only instead of just hearing the tears, she had to watch them. After explaining to her the diagnosis, Don asked "Ellie, do you know what cancer is?" "Yes. It's the virus that kills people." Oh my goodness. Moms are supposed to protect their babies, not scare them.
The old "ME" had things under control. Life was planned. Had to be -- lots of responsibilities and not enough time in each day. No more control apparently. But there is more time in each day because circumstances require more "no" answers to requests.
As I have journeyed through the trials and tribulations of breast cancer, I have thought more about death than ever before. I have re-examined my faith in the true and everlasting God. I have questioned HIm beyond what I could have imagined. I have experienced triumphs and failures over panic attacks and illness. I have known such true love and support from my amazing family and my dear friends.
No, I am not the same. I am weaker. I am stronger. I am more fearful. I am more courageous. I am scared. I am bold.
But I am not my body. And I am not cancer.
Friday, February 27, 2009
Thursday, February 26, 2009
Chemo on track again...how odd to be excited for poison.
The call came this morning. I had been randomized. Into the third arm of the clinical trial. Good news, because the third arm uses both the proven drug (Herceptin) and the trial drug, lapatanib --Tykerb) in conjunction with Taxol (which is the chemo drug). I'll have 12 weeks of Taxol and Herceptin. Both of these drugs are administered through my port -- another good thing. The fewer injections the better. After the twelve week cycle, there will be a six week "wash out" period with no drugs. After those six weeks, I'll start the daily lapatanib pill and will take that for the remainder of a year. Radiation treatment will be after the 12 weeks of chemo. If all goes "well", I should be done with chemo and radiation by early July. Oh, that seems so very far away.
I was surprised to learn that the nurse from Legacy Oncology Research will come to each of my chemo appointments. Today, she had me fill out the initial "Quality of Life" survey. Some of the questions were difficult to answer, some not so difficult, and some of the questions I refused to answer. There is still personal privacy, and I am not interested in sharing some aspects of my life with cancer with the research team, or with you, for that matter, thank you very much. Now, I realize that you may be reading this and thinking "what??? She is worried about privacy? Has she read her own notes on facebook? She already shares too much information!" Surprise! I am NOT telling you everything. Nor will I begin to. And I am not sorry about keeping some things to myself. I know you're all in a twitter with curiousity. You'll always wonder....
Interesting interaction with Dr. Segal today. He called me before my appointment to tell me about the randomization. When I answered my phone "Drenda Howatt", he said, "Hi, Drenda, this is Jerry". Ok. So we're on a first-name basis now. No more Mrs. Howatt or Dr. Segal. I knew we'd get to be great friends.
I was surprised to learn that the nurse from Legacy Oncology Research will come to each of my chemo appointments. Today, she had me fill out the initial "Quality of Life" survey. Some of the questions were difficult to answer, some not so difficult, and some of the questions I refused to answer. There is still personal privacy, and I am not interested in sharing some aspects of my life with cancer with the research team, or with you, for that matter, thank you very much. Now, I realize that you may be reading this and thinking "what??? She is worried about privacy? Has she read her own notes on facebook? She already shares too much information!" Surprise! I am NOT telling you everything. Nor will I begin to. And I am not sorry about keeping some things to myself. I know you're all in a twitter with curiousity. You'll always wonder....
Interesting interaction with Dr. Segal today. He called me before my appointment to tell me about the randomization. When I answered my phone "Drenda Howatt", he said, "Hi, Drenda, this is Jerry". Ok. So we're on a first-name basis now. No more Mrs. Howatt or Dr. Segal. I knew we'd get to be great friends.
Wednesday, February 25, 2009
Perhaps more waiting...
I heard late this afternoon that I am still not "randomized" (is that even a word?) in the clinical trial. FRUSTRATING! I have been assured that the randomization will be done tomorrow morning. That is important because I am scheduled to begin (after two delays) the second phase of chemotherapy tomorrow at noon.
As it stands currently, I have a 50% chance of being able to go ahead with treatment tomorrow. And 50% chance of having to wait, yet again. If I have to wait, it would be for the trial drug to be delivered, and that takes two days. Waiting means that treatment would start on Monday or Tuesday, or so I've been assured. I don't know if participating in the trial is the best thing, the right thing to do. It's a risk. A guess. A gamble, either way. And a lot of stress.
Waiting. Wondering. Questioning.
As it stands currently, I have a 50% chance of being able to go ahead with treatment tomorrow. And 50% chance of having to wait, yet again. If I have to wait, it would be for the trial drug to be delivered, and that takes two days. Waiting means that treatment would start on Monday or Tuesday, or so I've been assured. I don't know if participating in the trial is the best thing, the right thing to do. It's a risk. A guess. A gamble, either way. And a lot of stress.
Waiting. Wondering. Questioning.
Sunday, February 22, 2009
Screaming
I still have hair. Some. White. And it was long. 1/4 inch or so. But no more. As I progress through this "cancer thing", I find myself growing stronger, and even more courageous. For I am beginning to not care about convention. As in having hair, or having my bald-ish head covered in public. As a result, I just finished completely "buzzing" my head. Not shaved with a razor, but as close to that as possible. I was more self-conscious with 1/4 inch long hair than I think I will be with hair so short it cannot be measured.
I have pretty much stopped wearing my "hair" (as in wig). And, while having a bald-ish head is COLD, I am beginning to cut back on wearing hats as well. I need to be comfortable enough with my body to be able to take the hat off at any time -- especially during a hot flash. Because hot flashes are HOT. And sweaty. Hmmm. What would be worse, being a bald woman in public, or being a bald woman who has fainted in public?
Friday morning, I had the second echo-cardiogram. And I went without a hat. It was freeing. Even the second glances and stares from strangers -- while a bit difficult at first -- did not bother me enough to put my hat on. I still always travel with an emergency head-covering. Friday, I grew stronger.
Being bald in public is hard. Not the bald part. But the part that screams, without anyone saying a word, to passersby "I have CANCER". THAT is the hard part.
But I do have cancer. And I am bald. So, I'll just continue to live while my body screams. My new normal.
I have pretty much stopped wearing my "hair" (as in wig). And, while having a bald-ish head is COLD, I am beginning to cut back on wearing hats as well. I need to be comfortable enough with my body to be able to take the hat off at any time -- especially during a hot flash. Because hot flashes are HOT. And sweaty. Hmmm. What would be worse, being a bald woman in public, or being a bald woman who has fainted in public?
Friday morning, I had the second echo-cardiogram. And I went without a hat. It was freeing. Even the second glances and stares from strangers -- while a bit difficult at first -- did not bother me enough to put my hat on. I still always travel with an emergency head-covering. Friday, I grew stronger.
Being bald in public is hard. Not the bald part. But the part that screams, without anyone saying a word, to passersby "I have CANCER". THAT is the hard part.
But I do have cancer. And I am bald. So, I'll just continue to live while my body screams. My new normal.
Friday, February 6, 2009
x + 32 = 50
What does "x" equal? The number of days out of the last 50 that I have felt functional, o.k., or close to "normal". As in not terribly nauseated and/or receiving treatment.
For those of you who may struggle with math, the answer is that "x" = 18. 18 out of the last 50 days. I was beginning to feel like a baby - always complaining and crying about how awful I felt. No matter how hard I tried to control them, the tears were (and are) so often present. But when I did the math, I felt better. Because 18 is not very many. Add in to the mix that within those 50 days, we had college girls come and go, prepared for and celebrated Christmas, got through big snow storms, I continued to work two jobs (semi), and lived normal life. In retrospect, I did pretty good, I think.
End of math lesson for today.
For those of you who may struggle with math, the answer is that "x" = 18. 18 out of the last 50 days. I was beginning to feel like a baby - always complaining and crying about how awful I felt. No matter how hard I tried to control them, the tears were (and are) so often present. But when I did the math, I felt better. Because 18 is not very many. Add in to the mix that within those 50 days, we had college girls come and go, prepared for and celebrated Christmas, got through big snow storms, I continued to work two jobs (semi), and lived normal life. In retrospect, I did pretty good, I think.
End of math lesson for today.
Thursday, January 29, 2009
Chemo #4
Today was the day for chemo battle #4 -- the last treatment of the nasty (but, hopefully, effective) adriamyiacin and cytoxan. These are the drugs I can never have again, as at least one of them would prove to be fatal. I was a bit emotional as I sat in the blue recliner waiting for the poisons...and then, as I worked through it and calmed myself, I came back to the "it is what it is, and this is what it takes to make it different".
Dr. Segal was not happy with me when he learned that I had informed the research people at the clinical trial that I would sign up for the trial but would not stay in it if I was assigned to receive just the new drug. Shouldn't have told them that because they will think Dr. Segal is in "collusion" with me. So far from the truth -- he thinks I should do the study no matter which part I am assigned. Oh well.
I have continued to impress Dr. Segal in so many ways (other than the one mentioned above..) I know big words, my bone marrow is amazing (repeated today), AND I have continued to work. "That is impressive. So impressive. Hardly anyone works through this treatment." Perhaps I should reconsider and stop working? NO! It helps me to take my mind off of cancer. Besides, there are still those pesky bills to pay, darn them.
I have an echocardiogram (again) on February 6th, and a chest xray the same day. This is in preparation for the next steps in the treatment. I start weekly chemo with Taxol on February 12th. Taxol can cause an allergic reaction...so pray that I will be immune from that. There is an alternative, chemically related drug, but from what I've heard of the alternative, it is harder to handle. Taxol rarely causes nausea (!), but can cause loss of finger and toe nails. Can also cause neuropathy (numbness?) in fingers and toes. In conjunction with the Taxol, I will start the her2-neu inhibitors. Depending on the clinical trial, those drugs could be started at the same time. If I am on herceptin, I'll have injections weekly for one year. So I am glad that it will start with the beginning of Taxol and not wait until Taxol is done. That saves me 12 weeks. I should know more about the trial next week.
I have been reading in the book of James from the Bible. In verse of 2 of the first chapter, James tells us to "consider it pure joy when you encounter trials of various kinds..." Pure joy? Yes, because trials test my faith, and testing produces endurance and lets me grow as a whole person, to develop spiritual maturity, and stability of character. It is through confronting what I don't want that I am thrown back on to God. James does not promise that God will take away the trial/problem, or make it any easier, only that, if I let Him, God will give me what I need to get through. The trial might test me to the limit, but I will be the better for it. Hard advice, but liberating. Accept the cancer, trust God, and grow. In the end, that will bring peace.
Philip Yancey wrote "Faith means trusting in advance what will only make sense in reverse".
My faith has already been strengthened by looking in reverse...finding the lump through pain ("early stage breast cancer is painless" --not mine, apparently!), the fast trip to surgery, oncology, etc. The complete removal of the cancerous tissue, the cancer-free lymph-node, the availability of excellent health insurance. The wonderful support of family and friends.
I am convinced that God is at work here -- even through my tremendous weakness, His strength is evident to me. I hope He is evident, at least through my cancer journey, to you as well. There are no coincidences with God. None. And there are no surprises to Him. None. He is not just my God. He is THE God, Creator of Heaven and Earth, of you and of me. You can bet I have asked Him lots of hard questions...most beginning with the word "why". But every day that I can read His word, He answers me. With Scripture that speaks directly to me. Like this morning's passage in James -- every trial pure joy? And, how exactly, Lord, do I do that? But then He tells me! Just ask Him for the strength and wisdom, and He will supply it.
I must trust and obey, for there's no other way, to be happy in Jesus, but to trust and obey. And with His help, I will be strong and courageous and make it through this battle of cancer. But it is His strength that strengthens me. Accepting. Trusting. Growing.
Dr. Segal was not happy with me when he learned that I had informed the research people at the clinical trial that I would sign up for the trial but would not stay in it if I was assigned to receive just the new drug. Shouldn't have told them that because they will think Dr. Segal is in "collusion" with me. So far from the truth -- he thinks I should do the study no matter which part I am assigned. Oh well.
I have continued to impress Dr. Segal in so many ways (other than the one mentioned above..) I know big words, my bone marrow is amazing (repeated today), AND I have continued to work. "That is impressive. So impressive. Hardly anyone works through this treatment." Perhaps I should reconsider and stop working? NO! It helps me to take my mind off of cancer. Besides, there are still those pesky bills to pay, darn them.
I have an echocardiogram (again) on February 6th, and a chest xray the same day. This is in preparation for the next steps in the treatment. I start weekly chemo with Taxol on February 12th. Taxol can cause an allergic reaction...so pray that I will be immune from that. There is an alternative, chemically related drug, but from what I've heard of the alternative, it is harder to handle. Taxol rarely causes nausea (!), but can cause loss of finger and toe nails. Can also cause neuropathy (numbness?) in fingers and toes. In conjunction with the Taxol, I will start the her2-neu inhibitors. Depending on the clinical trial, those drugs could be started at the same time. If I am on herceptin, I'll have injections weekly for one year. So I am glad that it will start with the beginning of Taxol and not wait until Taxol is done. That saves me 12 weeks. I should know more about the trial next week.
I have been reading in the book of James from the Bible. In verse of 2 of the first chapter, James tells us to "consider it pure joy when you encounter trials of various kinds..." Pure joy? Yes, because trials test my faith, and testing produces endurance and lets me grow as a whole person, to develop spiritual maturity, and stability of character. It is through confronting what I don't want that I am thrown back on to God. James does not promise that God will take away the trial/problem, or make it any easier, only that, if I let Him, God will give me what I need to get through. The trial might test me to the limit, but I will be the better for it. Hard advice, but liberating. Accept the cancer, trust God, and grow. In the end, that will bring peace.
Philip Yancey wrote "Faith means trusting in advance what will only make sense in reverse".
My faith has already been strengthened by looking in reverse...finding the lump through pain ("early stage breast cancer is painless" --not mine, apparently!), the fast trip to surgery, oncology, etc. The complete removal of the cancerous tissue, the cancer-free lymph-node, the availability of excellent health insurance. The wonderful support of family and friends.
I am convinced that God is at work here -- even through my tremendous weakness, His strength is evident to me. I hope He is evident, at least through my cancer journey, to you as well. There are no coincidences with God. None. And there are no surprises to Him. None. He is not just my God. He is THE God, Creator of Heaven and Earth, of you and of me. You can bet I have asked Him lots of hard questions...most beginning with the word "why". But every day that I can read His word, He answers me. With Scripture that speaks directly to me. Like this morning's passage in James -- every trial pure joy? And, how exactly, Lord, do I do that? But then He tells me! Just ask Him for the strength and wisdom, and He will supply it.
I must trust and obey, for there's no other way, to be happy in Jesus, but to trust and obey. And with His help, I will be strong and courageous and make it through this battle of cancer. But it is His strength that strengthens me. Accepting. Trusting. Growing.
Wednesday, January 21, 2009
No "Sorry Buts"...
...allowed at our house. We've tried to teach our girls that an apology cannot come with a "but". As in "I'm sorry I hurt you, BUT you made me mad". True repentance and requesting of forgiveness cannot include rationalization for your wrong.
I was all set to apologize for complaining here on fb, but the apology was going to come with a "but". So, following our house rule, I will not apologize, because I am not truly sorry. I am discouraged. Deeply discouraged.
I have completed three chemo treatments so far. And they are not fun. Almost not even tolerable. I am awake now with pretty severe stomach cramps. I know, I know, there are people much worse off than me. But it doesn't feel that way. I have been sick for 6 days. SICK. However, given my experience with hyper-emesis (acute vomiting) and hospitalization with each of my pregnancies, I am doing my best to REFUSE my over-active gag reflex and avoid throwing-up. I know I would not be able to stop, and would probably end up in the hospital. But sometimes...
So many people have encouraged me. "You're 75% done with the bad treatments!" "Only one more to go!" yikes. I CAN"T do one more. I will do one more, but let me tell you, it is not easy to willingly walk into Northwest Cancer Specialties and submit to more poison. Hard to keep my eye on the "prize", so to speak. These are the times that I recognize the enemy at work. But I am too weak to fight him. I rely on the prayers and support of family and friends.
So, we careen along this journey of breast cancer, with so many ups and even more downs. The difference between us? Some of you can choose to stop reading. I will continue to write, and live, this journey. And why, exactly, do I write? Many reasons. Probably therapy. Education. Notification. But the real reasons? My babies. Anna, Rachel, and Ellie. My sisters. Linda, Laurie, Sally, Becky, and Janette. My nieces. Audrey, Dustine, Jessica, Amanda, Denise, Abi, Marilla, Sophie, and Claire. All of whom must now answer the question "history of breast cancer in your family?" with "....yes....." I write so that they can know this journey, and not be as frightened as I have been. That we all can look back and learn from the struggles and joys we experience. That, through it all, God will be glorified and I will be a faithful and true witness to His goodness.
Now, for sleep.
Drenda
I was all set to apologize for complaining here on fb, but the apology was going to come with a "but". So, following our house rule, I will not apologize, because I am not truly sorry. I am discouraged. Deeply discouraged.
I have completed three chemo treatments so far. And they are not fun. Almost not even tolerable. I am awake now with pretty severe stomach cramps. I know, I know, there are people much worse off than me. But it doesn't feel that way. I have been sick for 6 days. SICK. However, given my experience with hyper-emesis (acute vomiting) and hospitalization with each of my pregnancies, I am doing my best to REFUSE my over-active gag reflex and avoid throwing-up. I know I would not be able to stop, and would probably end up in the hospital. But sometimes...
So many people have encouraged me. "You're 75% done with the bad treatments!" "Only one more to go!" yikes. I CAN"T do one more. I will do one more, but let me tell you, it is not easy to willingly walk into Northwest Cancer Specialties and submit to more poison. Hard to keep my eye on the "prize", so to speak. These are the times that I recognize the enemy at work. But I am too weak to fight him. I rely on the prayers and support of family and friends.
So, we careen along this journey of breast cancer, with so many ups and even more downs. The difference between us? Some of you can choose to stop reading. I will continue to write, and live, this journey. And why, exactly, do I write? Many reasons. Probably therapy. Education. Notification. But the real reasons? My babies. Anna, Rachel, and Ellie. My sisters. Linda, Laurie, Sally, Becky, and Janette. My nieces. Audrey, Dustine, Jessica, Amanda, Denise, Abi, Marilla, Sophie, and Claire. All of whom must now answer the question "history of breast cancer in your family?" with "....yes....." I write so that they can know this journey, and not be as frightened as I have been. That we all can look back and learn from the struggles and joys we experience. That, through it all, God will be glorified and I will be a faithful and true witness to His goodness.
Now, for sleep.
Drenda
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