Most people wonder when they hear of others being diagnosed with cancer, what it is really like. I know I did. Some seem to pull through and go on with apparent normal life and many still succumb to the insider attack. There are daily little things that are different that I pondered while showering this morning.
The first thought is hair. Everyone asks will you lose you hair. The answer is on some drugs yes, and others no and others most of it but not all. In the latter case it may as well all go because by the time you are gone the surviving wisps barely give cover. The other aspect is that ALL the hair goes. Think about that a minute. As I performed a more rare morning ritual this morning of showering, washing my hair AND shaving, I remembered how much a pain it had been in the past to take those few extra moments. Now the feel of nice smooth cleanly shaven legs is a pleasure but rarely performed. The hair grows in so sparse and irregular and slow that it is weeks until I'll shave again. Eyebrows? We learn to use makeup artistry to draw those normal face features in. Color? I've drawn to more of it since my diagnosis disliking dull, dark drab colors. And color in the hair? I didn't think I would ever dye my hair but in this as in other things my body has betrayed me.
This body is no longer mine. It no longer obeys me. First it took on this sickness without any invitiation. It disrupted my normal process of aging that I had prepared to meet face on with humor and good faith. Now my body aches and won't perform normal minor physical exertions without being exhausted. Now my body isn't whole. It has lost several important organs. Instead of normal menopause to share around the tea table with other female friends I was thrown into surgical menopause overnight. Instead of gradually graying with sophistication my hair after gem/cis looked as spare and gray as my 90 year old aunt's. This was truly dispair. I just couldn't face the mirror anymore but dreaded that growth line as color grows out. My favorite hairdresser suggested henna since my hair has so many chemicals in it. He said it would be easy to just put in and wash out when needed. After the first scary episode the results were not totally frightening so I've added some.
These are only a few thoughts for this early cold morning. Now let's have a cup of tea.
Tuesday, December 23, 2008
Post Script
I am so happy to hear from friends who have been following this blog. If you request
an invite to the personal site, please include an email so I can reply to you with an
invitation. Rest assured that this info will be deleted from this blog site and will not
be posted. I do not have means to return reply to your comments posted here.
Thank you.
an invite to the personal site, please include an email so I can reply to you with an
invitation. Rest assured that this info will be deleted from this blog site and will not
be posted. I do not have means to return reply to your comments posted here.
Thank you.
Monday, December 22, 2008
Blog ettiquette
For those who may be joining me in this venture, at the left of the entries is a little blurb about me and the purpose of this blog which reads:
This is a brand new attempt to record my thoughts and experiences on this journey with ovarian cancer (ovca) and also maintain an update with friends and family with one posting on my progress and treatments. I was diagnosed with ovca stage 3A grade 3 in September 2005. Since I have received first line and secondary line treatments and am now writing my own map on my health and future as my recurrences persist.Hopefully what I record here will inform all those I love with my current status and also help me to process the issues directly related to my journey with ovca. To loved ones, friends and family, I don't intend to depersonalize our communications, but actually to intensify what I am able to pass on in a uniform means to keep everyone equally informed. My love to and appreciation for you all from deep in my heart.
The express purpose is to discuss and share a cancer diagnosis and how it impacts my life. It is not an opportunity to discuss personal issues that are unrelated to this topic. It is in particular NOT the forum to pass judgement on my or another's life decisions of which the commenter does not possess full and honest knowledge.
In the world of blog it is highly offensive to reveal someone's personal data without permission. This is a priority reason for rejecting comments. I desire the anonimity from many who google appropriate terms and find this site, who I don't know from the man down the street or the stray in California for that matter. Many have been invited from cancer forums who also deal with terminal cancer and issues that the average person doesn't have a clue about. It's offensive to these readers to assume knowledge where one is ignorant. There are many personal friends who read here to keep abreast of my progress in an easier format than writing tens of emails every month or so.
On the reverse, the commenter has the privilege of being shrouded in secrecy and darkness unless they have revealed to me their identity which I will keep confidential. Shooting from the hip with a concealed weapon is highly unethical. Thereby the necessity to moderate comments now that someone, who is shrouded in secrecy, has chosen to use this venue for their own angst.
I have specifically requested in a previous post that these types of comments cease and desist. I consider their continuance harrassment and will document such.
Further more, if someone has such grief about my personal life that they need to vent their judgement and call heaven and hell down on me, I am sure that to know those particulars they also know the address of my front door where they can in good Christian faith approach me with witnesses and resolve the matter.
In good faith, I am preparing a much more personal web site to which members must be invited by myself alone. Be prepared to identify yourself confidentially but you may request such an invite through a comment here which I will moderate. Or you may ask me directly through phone, snail mail or email.
I love you all and for the blessings and hope that a dear fellow victim of ovca gave to me through the depth and honesty of her blog journal up until the day of her death, I in turn wish to extend that to others. If dealing with a life of cancer and imminent mortality is difficult to handle then I suggest you frequent other lighter locations.
This is a brand new attempt to record my thoughts and experiences on this journey with ovarian cancer (ovca) and also maintain an update with friends and family with one posting on my progress and treatments. I was diagnosed with ovca stage 3A grade 3 in September 2005. Since I have received first line and secondary line treatments and am now writing my own map on my health and future as my recurrences persist.Hopefully what I record here will inform all those I love with my current status and also help me to process the issues directly related to my journey with ovca. To loved ones, friends and family, I don't intend to depersonalize our communications, but actually to intensify what I am able to pass on in a uniform means to keep everyone equally informed. My love to and appreciation for you all from deep in my heart.
The express purpose is to discuss and share a cancer diagnosis and how it impacts my life. It is not an opportunity to discuss personal issues that are unrelated to this topic. It is in particular NOT the forum to pass judgement on my or another's life decisions of which the commenter does not possess full and honest knowledge.
In the world of blog it is highly offensive to reveal someone's personal data without permission. This is a priority reason for rejecting comments. I desire the anonimity from many who google appropriate terms and find this site, who I don't know from the man down the street or the stray in California for that matter. Many have been invited from cancer forums who also deal with terminal cancer and issues that the average person doesn't have a clue about. It's offensive to these readers to assume knowledge where one is ignorant. There are many personal friends who read here to keep abreast of my progress in an easier format than writing tens of emails every month or so.
On the reverse, the commenter has the privilege of being shrouded in secrecy and darkness unless they have revealed to me their identity which I will keep confidential. Shooting from the hip with a concealed weapon is highly unethical. Thereby the necessity to moderate comments now that someone, who is shrouded in secrecy, has chosen to use this venue for their own angst.
I have specifically requested in a previous post that these types of comments cease and desist. I consider their continuance harrassment and will document such.
Further more, if someone has such grief about my personal life that they need to vent their judgement and call heaven and hell down on me, I am sure that to know those particulars they also know the address of my front door where they can in good Christian faith approach me with witnesses and resolve the matter.
In good faith, I am preparing a much more personal web site to which members must be invited by myself alone. Be prepared to identify yourself confidentially but you may request such an invite through a comment here which I will moderate. Or you may ask me directly through phone, snail mail or email.
I love you all and for the blessings and hope that a dear fellow victim of ovca gave to me through the depth and honesty of her blog journal up until the day of her death, I in turn wish to extend that to others. If dealing with a life of cancer and imminent mortality is difficult to handle then I suggest you frequent other lighter locations.
Sunday, December 7, 2008
Christmas Lights
Everywhere we turn we see the sparkle of Christmas flickering in the dark evenings and in the eyes of the children. A Saturday's stretching, reaching and climbing produced garlands and lights around our door and entry. Slowly and gradually the upcoming celebration is creeping into our home. My youngest son keeps us up to date with the daily countdown more accurately than the counter in the postoffice.
Thanks to an outpatient procedure this past week, the great discomfort I'd been experiencing has been relieved. I hope soon to hear a date to begin chemotherapy once again, this time using Avastin. The great wonder drug that gave me the past 2 years is no longer effective for me. The cruel fate of ovarian cancer is it's devious ability to grow resistant to most treatments. I look forward to whipping this curr one more time, albeit briefly, yet with some trepidition as continued chemo is never a desired treatment. It is hard on the bone marrow and wears the body down.
In steps forward for a New Year, I have made some drastic dietary changes. I've eliminated caffeine, most sugars (just a bit now and then), and have begun juicing daily and primarily trying to eat vegan. What a challenge but I am feeling good and doing well at this time. What little meats I am eating don't seem to do much harm and I feel so much better with much much reduced dairy in my food choices. The progression of ovarian cancer tends to involve some difficult bowel issues and I am trying to prevent or avoid that as much as possible with this new diet. Now to master tofu.
Thanks to an outpatient procedure this past week, the great discomfort I'd been experiencing has been relieved. I hope soon to hear a date to begin chemotherapy once again, this time using Avastin. The great wonder drug that gave me the past 2 years is no longer effective for me. The cruel fate of ovarian cancer is it's devious ability to grow resistant to most treatments. I look forward to whipping this curr one more time, albeit briefly, yet with some trepidition as continued chemo is never a desired treatment. It is hard on the bone marrow and wears the body down.
In steps forward for a New Year, I have made some drastic dietary changes. I've eliminated caffeine, most sugars (just a bit now and then), and have begun juicing daily and primarily trying to eat vegan. What a challenge but I am feeling good and doing well at this time. What little meats I am eating don't seem to do much harm and I feel so much better with much much reduced dairy in my food choices. The progression of ovarian cancer tends to involve some difficult bowel issues and I am trying to prevent or avoid that as much as possible with this new diet. Now to master tofu.
Wednesday, October 22, 2008
Great News
The nurse from Lancaster G/O unit called today to confirm that Fox Chase will review my records and meet with me as soon as possible. I am hoping there may be a clinical trial or access to new meds with helpful funding via this option.
Unfortunately my CA125 began to slowly rise even while on my last treatment with gem/cis, which means I have probably exhausted its benefits for me. Thankfully the gem/cis program has given me two very reasonably healthy years. My doc has been very honest that it is his objective to keep me alive long enough for something new to attack this beast.
Unfortunately my CA125 began to slowly rise even while on my last treatment with gem/cis, which means I have probably exhausted its benefits for me. Thankfully the gem/cis program has given me two very reasonably healthy years. My doc has been very honest that it is his objective to keep me alive long enough for something new to attack this beast.
Sorry for the inconvenience
For all of you who regularly follow and comment on this blog, I am sorry for the inconvenience of needing to moderate all comments. Unfortunately there is an individual who has chosen to harrass myself and my friends through this venue. I began this blog as a means of consolidating intested friends, family, and other cancer survivors to share my journey with cancer.
This really is not the avenue to address the condition of my faith or heart or to direct unfounded accusations toward me. If someone knows me that personally I should hope they are brave enough to contact me and address their concerns privately rather than on a public forum under cover of anonymity. I am hoping the moderation will curtail further such activity.
This really is not the avenue to address the condition of my faith or heart or to direct unfounded accusations toward me. If someone knows me that personally I should hope they are brave enough to contact me and address their concerns privately rather than on a public forum under cover of anonymity. I am hoping the moderation will curtail further such activity.
Tuesday, October 7, 2008
Trial Run
The chemo nurse called yesterday very concerned about my platelet count. It had fallen to 10,000. Not having any symptoms of such a low count, the doc decided to wait 24 hours. Not to hold anyone in suspense, my counts climbed by 11,000 overnight and the anticipated transufusion was cancelled, but it was a good trial run for us.
Last year, after my admission, I had promised the younger children they could go with me if I was to be admitted in the hospital two hours away. Yesterday afternoon, we made all the arrangements, notified the school, etc. Last evening, I sat down and talked with the children about what was happening and prepared for the trip. It was good news not to be going today and also reassuring that plans had fallen into place and all went smoothly.
Meanwhile, I am living 'cancer free' for 12 days and counting.
Smilesiris, please be aware that this is a public forum read by many many friends and family as well as whoever else may join in from cyberspace. Some have expressed concern with your comments. The internet is a wonderful means of communicating with many but is also a ticklish forum to maintain privacy. If there is something personal you wish to address please contact me via another means. Thank you.
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