No news = good news
Well, after many months of no news, we're back to having news.
As
you know, my mom was given an additional three months of no
treatment after her CT scan in September was stable . This came as a huge
surprise and an even bigger relief.
My
mom wasted no time and spent six weeks traveling the world. She spent
time in Jordan, Turkey, Portugal, and Switzerland. I was fortunate
enough to join her for some of the trip and I am forever grateful for
the adventures we shared.
Unfortunately,
while in Switzerland, my mom became sick and ended up in the hospital.
The fluid in her lungs had returned and despite their best attempt to
drain it, they were not able to successfully alleviate her discomfort.
After a short travel ban since flying would likely compromise her lungs,
she was able to get home.
We
spent last week going from appointment to appointment, and yesterday we
met with the oncologist. As we predicted, the cancer has progressed.
The lesions that never went away have increased and there are also new growths in her abdomen.
The
oncologist decided that my mom was not a good candidate for the same
chemo regime she was on last fall, so he is changing her treatment and starting her on a new plan with three drugs. It's the same gig -- six rounds, 18 weeks total, so that puts us into April.
The success rate with
second-line therapy decreases substantially (40-50% versus 80% with the
last chemo), so all we can hope for at this point is a response. It
takes a few weeks to know that the chemo is working via the CA-125 blood
test, so until then, we wait and keep hope.
It's
been a rough past two weeks, but we are prepared for the months ahead (at least
more so than last year). I'm not sure I'll ever get used to this
reality. My mom is sad. I'm sad. The hard part is that we knew this was going to happen, but it still hurts. Deep down there is a part of my mind that keep hopes that she's the exception to the statistics, but then I stare at a CT scan and
realize just how real this is.
Due
to the seriousness of the growth, my mom is starting chemo on the 15th,
so as much as we had hoped to wait until after the holidays, she must
begin as soon as possible. Nonetheless, we are committed to celebrating the holidays and giving thanks for all the love in our lives.
Please continue to keep us in your thoughts.
xoxo
December 6, 2014
September 10, 2014
good news returns
On Monday we received encouraging news -- my mom's CT scan showed stable disease (and somewhat less of it) and her CA-125 blood test was well within the normal range.
Her oncologist said she should return in two months for another blood test and if her CA-125 level remains normal, then she won't need to be scanned again until December. This means no treatment for at least another two months! Given the news, we postponed our trip to Boston for a second opinion until a treatment decision is needed.
In June, we were told that my mom's chemo regiment had grown resistant to her cancer since there were remaining nodules. This was completely devastating as that chemo is considered the best drug combination available, and since her body was no longer responding to it, we would have to look to second-line therapies for her next round of treatment.
Well, the best news of all (and surprising) is that if my mom is able to remain off chemo for another three months (six months total), then her oncologist will consider the previous chemo a success (even if it didn't get rid of all the cancer). This is important because it means that she can return to the same chemo regiment, instead of moving to second-line therapies, and we know her body responds well to it. We want to delay having to use second and third-line therapies for as long as possible because their response rate is much lower. So now we wait and hope she hits the six month mark.
The only issue remaining is my mom's back, which has been bothering her for the past few months. The pain has been quite debilitating and she is unable to walk for more than ten minutes, even after receiving two spine injections. Thus, we are shifting focus to her back, and she is getting an MRI this week and we'll see the ortho specialist on Monday.
I want her to get some pain relief because Europe is awaiting her arrival! Now that my mom has more treatment-free time, she is eager to pack her bags and head to my uncle's in Geneva, Switzerland.
So, we continue to unpack my mom's new apartment in Chicago and digest the news. Personally, I had planned for the worst, so now I have to absorb the idea that we received good news and we have another two months of freedom. I feel incredibly grateful for more time with my mom while she feels well...this is more than I could have hoped for.
Happy fall.
Her oncologist said she should return in two months for another blood test and if her CA-125 level remains normal, then she won't need to be scanned again until December. This means no treatment for at least another two months! Given the news, we postponed our trip to Boston for a second opinion until a treatment decision is needed.
In June, we were told that my mom's chemo regiment had grown resistant to her cancer since there were remaining nodules. This was completely devastating as that chemo is considered the best drug combination available, and since her body was no longer responding to it, we would have to look to second-line therapies for her next round of treatment.
Well, the best news of all (and surprising) is that if my mom is able to remain off chemo for another three months (six months total), then her oncologist will consider the previous chemo a success (even if it didn't get rid of all the cancer). This is important because it means that she can return to the same chemo regiment, instead of moving to second-line therapies, and we know her body responds well to it. We want to delay having to use second and third-line therapies for as long as possible because their response rate is much lower. So now we wait and hope she hits the six month mark.
The only issue remaining is my mom's back, which has been bothering her for the past few months. The pain has been quite debilitating and she is unable to walk for more than ten minutes, even after receiving two spine injections. Thus, we are shifting focus to her back, and she is getting an MRI this week and we'll see the ortho specialist on Monday.
I want her to get some pain relief because Europe is awaiting her arrival! Now that my mom has more treatment-free time, she is eager to pack her bags and head to my uncle's in Geneva, Switzerland.
So, we continue to unpack my mom's new apartment in Chicago and digest the news. Personally, I had planned for the worst, so now I have to absorb the idea that we received good news and we have another two months of freedom. I feel incredibly grateful for more time with my mom while she feels well...this is more than I could have hoped for.
Happy fall.
August 21, 2014
Happy summer days
Let me start out by saying that this summer has been absolutely wonderful. I've been fortunate to see many of my good friends, celebrate marriages, travel, and just breathe. Of course the best part has been the time spent with my mom. We've laughed to the point of crying, spent beautiful days at the beach, attended some amazing concerts, swum at the wonderful outdoor 50m pool, and enjoyed everything that comes with summer.
I continue to feel extremely grateful for this time we've had together without any treatment. My mom's health has continued to improve and I can once again see the fight in her. She has completely changed her diet (no refined sugar, dairy, white bread, etc.), she also began an intense regime of supplements that she was unable to take during chemo, and recently she met with a Chinese doctor to begin a herb routine. It gives me so much peace knowing that she is doing everything possible to give this cancer a run for its money.
I've decided to permanently stay in Chicago and make a new life here for myself. I'm so fortunate to have amazing Chicago friends who keep me laughing. I spent June & July volunteering for a refugee youth summer program, which was a great experience, and I will continue with their after-school program in the fall. Once we have a better idea of my mom's treatment plan and needs, I'll evaluate the job situation (can I work full-time or just part-time?) and start looking! I'm eager to get back into the grind.
I'm getting my own apartment in the city and I will finally get my storage pod shipped from DC. It will be so great to have all of my stuff with me in one place, especially my clothes, although I've realized how little one actually needs. My mom and I realized that having my own space will be beneficial for both of us, even if I spend 2-3 nights with her, so I'm moving into a cute 1bdrm in early October. Visitors are welcome!
We've got a lot coming up...
Sept 2 -- move mom into new apartment in Chicago
Sept 3 -- mom gets CT scan
Sept 6 -- MARTHA's wedding!!!
Sept 7 -- Carrie Underwood concert
Sept 8 -- appt. with oncologist at Rush
Sept 10 -- appt. with oncologist at Dana Farber Cancer Institute in Boston for 2nd opinion
Sept 15 -- treatment starts?
Oct 5 -- I move into my own apartment in Chicago
We're in complete moving mode right now as we prepare to transition into a new apartment in Chicago. I can't believe we have to move again...this will be my 8th move in two years. It's also the end of living in Evanston, which is a bit emotional since it's truly home for me. However, the building my mom is moving into is owned by two families that I have known my entire life, so there is already a sense of comfort.
Mentally, I feel better prepared for our upcoming appointments. I have no clue what will happen...I know what I want to hear, but I also have realistic expectations. I'm glad that we're getting a 2nd opinion because this is the point in which there is likely to be varying views on the best course of treatment. Plus, Dana Farber may have a trial for my mom.
The mental roller coaster is perhaps the most difficult to explain. One minute I'm fine and going through my day, and then reality hits me like a bus and I just fall apart. I hate how low the lows are, but I get out of bed each day with a renewed sense of hope. I often feel that my mom is the only one who truly "gets it" and so I find a great deal of comfort when I'm with her because I don't have to explain anything...she just knows. Recently, I came across this article that provides advice for young caretakers and, oh man, it nailed everything right on the head. This is a club I never hoped to join, but now that I'm in it, I have to take things day by day and remember to breathe.
I hope more than anything that my mom is able to travel this fall/winter. It would bring me so much happiness to see her go on an adventure and visit some of the places she has yet to explore. This is my wish.
Please keep us in your thoughts in the coming weeks, especially on the 8th when we see the oncologist. I will do my best to post news in a timely manner, but as you know, I'm awful at communicating these days.
xoxo
June 22, 2014
Deep breaths
I've been dreading writing this post. When I started this blog I never imagined that it would be so difficult to put everything into words.
To say these past two weeks have been challenging does not even begin to describe my reality. That person filled with hope and optimism has faded...replaced with sadness.
On June 6th, we had my mom's post treatment appointment with her oncologist. She received a CT scan following nearly seven months of standard treatment (18 weeks of chemo and surgery). Unfortunately, we did not receive the news we had so desperately hoped to hear. My mom's CT scan revealed remaining cancerous nodules in her abdominal cavity, and while they are small, their presence is concerning.
The long story short is that the remaining cancer has grown resistant to the chemo, which is considered the most aggressive and effective option available on the market. Sadly, this means she has not achieved a "complete response" and is unlikely to ever to reach this mark, even with a change of chemo (although, anything is possible).
The oncologist presented three options: 1) immediately start on a new chemo drug in an attempt to reduce the amount of cancer remaining; 2) start on a maintenance drug and hope it keeps the cancer at bay; 3) take the summer off and come back in three months to determine next steps.
My mom and her oncologist agreed option three was the best option since her body is completely shot from all the chemo. Plus, she needs a break from appointments and the daily unknown of how she'll feel. And honestly, I need it too. We're so desperate to achieve some level of normalcy, even if it's only temporary.
This was a shocking blow after months of good news. I had absolute confidence that she was going to be in the clear, so upon hearing the news I went into complete hysterics. I fucking hate cancer...it takes so much and drains you in every way possible. And until you experience it, you cannot even begin to understand.
This is a complete game changer and we have yet to figure out how to best move forward. It's a sobering reminder of what we're up against. I'm mad at myself for becoming so optimistic and thinking we could stay ahead of this disease, but what else are you suppose to do?
I've been a mess since we got the news -- alternating between moments of being completely fine and moments of uncontrollable tears. The reality is simple...if her body is resistant to the absolute best medicine, then the chance that she's going to respond to anything else is not good (15-25% of patients respond to second-line drugs, depending on which you are given). With the previous chemo, 80% achieve a complete response, so my mom fell in that other 20%.
Our goal is to enjoy the summer and not dwell on the CT scan in September. I need to really dig deep and find the strength to get back to a good place, but damn is it hard. My mind is constantly running and thinking about the most random things. I continue to think about a future without my mom in it -- where will I go for holidays? Who will help me plan my wedding? Who will I call when I have question about being pregnant? It's these thoughts that just break me.
My mom continues to remain my rock. I am shocked by her calmness. While she took this recent news very hard, her ability to console me is what gets me through each day. Sometimes I feel guilty that I need so much support from her, but then again she is my mom and that's what mom's do best. I feel so fortunate that she can sympathize with my side of this journey.
I'm heading to DC later this week for a much needed weekend with friends. Lately I've felt very isolated, so seeing my favs will definitely lift my spirits. Boozy brunch here I come!
Happy 2nd day of summer. xoxo
Oh, and for those of you who are still not receiving automatic emails after I post, please either try again via a computer (not phone) or let me know and I will add you to the list!
To say these past two weeks have been challenging does not even begin to describe my reality. That person filled with hope and optimism has faded...replaced with sadness.
On June 6th, we had my mom's post treatment appointment with her oncologist. She received a CT scan following nearly seven months of standard treatment (18 weeks of chemo and surgery). Unfortunately, we did not receive the news we had so desperately hoped to hear. My mom's CT scan revealed remaining cancerous nodules in her abdominal cavity, and while they are small, their presence is concerning.
The long story short is that the remaining cancer has grown resistant to the chemo, which is considered the most aggressive and effective option available on the market. Sadly, this means she has not achieved a "complete response" and is unlikely to ever to reach this mark, even with a change of chemo (although, anything is possible).
The oncologist presented three options: 1) immediately start on a new chemo drug in an attempt to reduce the amount of cancer remaining; 2) start on a maintenance drug and hope it keeps the cancer at bay; 3) take the summer off and come back in three months to determine next steps.
My mom and her oncologist agreed option three was the best option since her body is completely shot from all the chemo. Plus, she needs a break from appointments and the daily unknown of how she'll feel. And honestly, I need it too. We're so desperate to achieve some level of normalcy, even if it's only temporary.
This was a shocking blow after months of good news. I had absolute confidence that she was going to be in the clear, so upon hearing the news I went into complete hysterics. I fucking hate cancer...it takes so much and drains you in every way possible. And until you experience it, you cannot even begin to understand.
This is a complete game changer and we have yet to figure out how to best move forward. It's a sobering reminder of what we're up against. I'm mad at myself for becoming so optimistic and thinking we could stay ahead of this disease, but what else are you suppose to do?
I've been a mess since we got the news -- alternating between moments of being completely fine and moments of uncontrollable tears. The reality is simple...if her body is resistant to the absolute best medicine, then the chance that she's going to respond to anything else is not good (15-25% of patients respond to second-line drugs, depending on which you are given). With the previous chemo, 80% achieve a complete response, so my mom fell in that other 20%.
Our goal is to enjoy the summer and not dwell on the CT scan in September. I need to really dig deep and find the strength to get back to a good place, but damn is it hard. My mind is constantly running and thinking about the most random things. I continue to think about a future without my mom in it -- where will I go for holidays? Who will help me plan my wedding? Who will I call when I have question about being pregnant? It's these thoughts that just break me.
My mom continues to remain my rock. I am shocked by her calmness. While she took this recent news very hard, her ability to console me is what gets me through each day. Sometimes I feel guilty that I need so much support from her, but then again she is my mom and that's what mom's do best. I feel so fortunate that she can sympathize with my side of this journey.
I'm heading to DC later this week for a much needed weekend with friends. Lately I've felt very isolated, so seeing my favs will definitely lift my spirits. Boozy brunch here I come!
Happy 2nd day of summer. xoxo
Oh, and for those of you who are still not receiving automatic emails after I post, please either try again via a computer (not phone) or let me know and I will add you to the list!
May 28, 2014
The best has yet to come
Well, if there is an award for "worst blogger" I'm certainly in the running.
As most of you are aware, I spent the last month in Uganda. I was so happy to get out of Chicago and back to a place that makes me so happy. Thus, while I was away, I had no interest in blogging as I wanted to forget about everything I had left back at home.
Upon my return earlier this week, my mom texted that she was sick and couldn't pick me up from the airport, so it was a harsh reality to come back to. For some reason, I really wanted my mom there to greet me -- I wanted everything to be normal again. Luckily, my cab driver was from Chad and so we had a delightful conversation about African politics, so in the end it wasn't all bad :)
Yesterday we headed to what will *hopefully* be my mom's LAST chemo treatment. Next week she'll have a CT scan and if there is no detectable cancer (complete response), her oncologist will decide whether to do one more cycle (three treatments) or release her from treatment and start the surveillance process. If there is pleural effusion (cancerous fluid around the lung) or signs of tumor, it is a wildly different conversation, but one we do not anticipate having.
If my mom is done with treatment, she'll be monitored on a monthly basis via the CA-125 blood test and a quarterly CT scan. For late stage ovarian, they do not use the word "remission," instead they use "learning to live with cancer." Her last CA-125 was 11, so that is a remarkable drop from the beginning of this journey when she was in the 800s. Next week she will receive her final CA-125 count and that will be her baseline moving forward, so any significant jump (+20) could indicate the cancer has returned.
So, we can see the light at the end of the tunnel.
I'm feeling very optimistic and I look forward to my mom's recovery from the chemo. These last few rounds have really hit her hard and I'm not sure she can tolerate any more chemo. I cannot wait until she gets her strength and spirit back. I know we're going to have a good summer together before we determine next steps.
While we still have uncertainty ahead, I have confidence that we are prepared for what's to come. This has been an absolute nightmare, but it has brought my mom and I much closer, and it has strengthened relationships with many of you. I could not have gotten through these past seven months without all of your love and support. Those early weeks were so difficult and I wasn't sure we'd make it to this point, but we did and it feels so damn good.
Last weekend, one of the most important people in my life got engaged and when I received the news, I felt genuine happiness and excitement for her. It was at this point that I realized I'm back. My mind has cleared, I'm reconnecting with my true self, and I can once again appreciate my life.
One of my favorite quotes has always been "the best has yet to come," but for the past few months I stopped believing in those words. Now, I once again believe the truth in that saying. Yes, there will be difficult decisions ahead and the inevitable day when my mom's cancer returns, but we will once again take it day by day and do what we need to do.
Please send us positive thoughts as we enter this final phase -- I wish for nothing more than to hear that there is no detectable cancer. We meet with the oncologist next Friday (June 6th), so I will send an update over the weekend.
Love to each and every one of you.
As most of you are aware, I spent the last month in Uganda. I was so happy to get out of Chicago and back to a place that makes me so happy. Thus, while I was away, I had no interest in blogging as I wanted to forget about everything I had left back at home.
Upon my return earlier this week, my mom texted that she was sick and couldn't pick me up from the airport, so it was a harsh reality to come back to. For some reason, I really wanted my mom there to greet me -- I wanted everything to be normal again. Luckily, my cab driver was from Chad and so we had a delightful conversation about African politics, so in the end it wasn't all bad :)
Yesterday we headed to what will *hopefully* be my mom's LAST chemo treatment. Next week she'll have a CT scan and if there is no detectable cancer (complete response), her oncologist will decide whether to do one more cycle (three treatments) or release her from treatment and start the surveillance process. If there is pleural effusion (cancerous fluid around the lung) or signs of tumor, it is a wildly different conversation, but one we do not anticipate having.
If my mom is done with treatment, she'll be monitored on a monthly basis via the CA-125 blood test and a quarterly CT scan. For late stage ovarian, they do not use the word "remission," instead they use "learning to live with cancer." Her last CA-125 was 11, so that is a remarkable drop from the beginning of this journey when she was in the 800s. Next week she will receive her final CA-125 count and that will be her baseline moving forward, so any significant jump (+20) could indicate the cancer has returned.
So, we can see the light at the end of the tunnel.
I'm feeling very optimistic and I look forward to my mom's recovery from the chemo. These last few rounds have really hit her hard and I'm not sure she can tolerate any more chemo. I cannot wait until she gets her strength and spirit back. I know we're going to have a good summer together before we determine next steps.
While we still have uncertainty ahead, I have confidence that we are prepared for what's to come. This has been an absolute nightmare, but it has brought my mom and I much closer, and it has strengthened relationships with many of you. I could not have gotten through these past seven months without all of your love and support. Those early weeks were so difficult and I wasn't sure we'd make it to this point, but we did and it feels so damn good.
Last weekend, one of the most important people in my life got engaged and when I received the news, I felt genuine happiness and excitement for her. It was at this point that I realized I'm back. My mind has cleared, I'm reconnecting with my true self, and I can once again appreciate my life.
One of my favorite quotes has always been "the best has yet to come," but for the past few months I stopped believing in those words. Now, I once again believe the truth in that saying. Yes, there will be difficult decisions ahead and the inevitable day when my mom's cancer returns, but we will once again take it day by day and do what we need to do.
Please send us positive thoughts as we enter this final phase -- I wish for nothing more than to hear that there is no detectable cancer. We meet with the oncologist next Friday (June 6th), so I will send an update over the weekend.
Love to each and every one of you.
March 30, 2014
March
March has felt like the shortest, yet longest.month.ever.
I was able to make it to DC to celebrate the Brody-Hart nuptials and it was the perfect weekend. I saw so many friends and spent most of the time laughing. Thank you to everyone who made time to see me! Of course after a few days of fun, I came down with a virus of some sort and was in bed for a solid week. Yuck. The only upside to being sick was that I finally started watching Scandal and became instantly obsessed. In a few days time I managed to binge watch every single episode (yes, that's 31.5 hours). Seriously though, why wasn't my life that exciting when I lived in DC?
My mom recovered from surgery extremely well! I could not believe her determination to regain her strength. She has been out and about, which is really great to see and there are moments when I almost forget that she's sick. She had a CT scan earlier in the week and it was clean -- no tumor growth or visible evidence of cancer.
We met with the oncologist on Friday to discuss the next phase of her treatment plan. Unlike in the past, when we had very few decisions to make since her treatment followed a standard plan, we now have some decisions to make.
The first decision regards her chemo regiment -- do we change drugs, do we change the dosage, do we switch to infusion every three weeks instead of weekly, etc. In the end, my mom decided to stay on the same combination of drugs and continue with weekly infusion since she responded so well during the first phase.
The second discussion surrounded a "maintenance" drug called Avastin, which is an off-label, non-FDA approved drug used to prolong a patients remission time. It's administered with the final cycles of chemo and then every month for as long as the body can tolerate it or until there is a recurrence of cancer. In trial studies, it has an average prolonged remission time of four months.
On Friday, my mom asked the oncologist what he thought the average remission time was for someone similar to her (stage IV, responded well to chemo, optimally debulked, etc.). He responded that almost all patients have a recurrence within the first two years, although he's seen some as soon as three months. Statistically speaking, the average is around ten months.
I have no doubt that my mom will be on the longer end of the spectrum.
Anyway, while Avastin prolongs remission time, it has some really scary side effects that require monitoring. Additionally, it is very expensive ($50-100k, depending on how much your insurance covers). So the question becomes: do you opt out of maintenance and enjoy your remission with no side effects or do you take a risk and hope the drug gives you extra months?
This has been a really difficult decision for my mom. She wants to spend the next year traveling and hitting her bucket list, and she doesn't want to worry about finding an infusion center or having one of the scary side effects occur while she's abroad. Furthermore, she wants to spend her time off chemo feeling "normal" and not sick. It really comes down to quality of life. Thus, at this point, she has chosen not to receive Avastin. I can completely understand her decision, although it's a little more difficult for me as I just want her to have as much time as possible.
Tomorrow we start the chemo routine again, which is a little hard to swallow because I hate seeing my mom sick. She's so strong right now and it's great having her back, and within a few days she'll be weak again. Although, the good news is that given her excellent surgical outcome, they have cut her chemo from six cycles (18 weeks) to three cycles (9 weeks), so the sooner she starts the sooner it'll be over.
So that's where things stand.
March has proven to be a huge challenge. There are days when I'm completely exhausted from all of this...the appointments, waiting for results, the day-to-day caretaking, and the continued unknown, etc. This cancer has completely consumed our lives and at times it drains me both mentally and physically. The continued cold weather has not helped either, so I'm putting my money on April to change things around. Until then, I'll continue to think of summer and the various weddings where I'll get to see my favorite ladies -- I really miss my Wooster girls.
I'm spending the month of May in Uganda, so I just need to get through the next month and then I will have a break. Well, kind of, it's still work, but a change of scenery is very welcomed at this point. I really need to get away for a bit and just breathe.
As always, thanks for all the continued love and support.
I was able to make it to DC to celebrate the Brody-Hart nuptials and it was the perfect weekend. I saw so many friends and spent most of the time laughing. Thank you to everyone who made time to see me! Of course after a few days of fun, I came down with a virus of some sort and was in bed for a solid week. Yuck. The only upside to being sick was that I finally started watching Scandal and became instantly obsessed. In a few days time I managed to binge watch every single episode (yes, that's 31.5 hours). Seriously though, why wasn't my life that exciting when I lived in DC?
My mom recovered from surgery extremely well! I could not believe her determination to regain her strength. She has been out and about, which is really great to see and there are moments when I almost forget that she's sick. She had a CT scan earlier in the week and it was clean -- no tumor growth or visible evidence of cancer.
We met with the oncologist on Friday to discuss the next phase of her treatment plan. Unlike in the past, when we had very few decisions to make since her treatment followed a standard plan, we now have some decisions to make.
The first decision regards her chemo regiment -- do we change drugs, do we change the dosage, do we switch to infusion every three weeks instead of weekly, etc. In the end, my mom decided to stay on the same combination of drugs and continue with weekly infusion since she responded so well during the first phase.
The second discussion surrounded a "maintenance" drug called Avastin, which is an off-label, non-FDA approved drug used to prolong a patients remission time. It's administered with the final cycles of chemo and then every month for as long as the body can tolerate it or until there is a recurrence of cancer. In trial studies, it has an average prolonged remission time of four months.
On Friday, my mom asked the oncologist what he thought the average remission time was for someone similar to her (stage IV, responded well to chemo, optimally debulked, etc.). He responded that almost all patients have a recurrence within the first two years, although he's seen some as soon as three months. Statistically speaking, the average is around ten months.
I have no doubt that my mom will be on the longer end of the spectrum.
Anyway, while Avastin prolongs remission time, it has some really scary side effects that require monitoring. Additionally, it is very expensive ($50-100k, depending on how much your insurance covers). So the question becomes: do you opt out of maintenance and enjoy your remission with no side effects or do you take a risk and hope the drug gives you extra months?
This has been a really difficult decision for my mom. She wants to spend the next year traveling and hitting her bucket list, and she doesn't want to worry about finding an infusion center or having one of the scary side effects occur while she's abroad. Furthermore, she wants to spend her time off chemo feeling "normal" and not sick. It really comes down to quality of life. Thus, at this point, she has chosen not to receive Avastin. I can completely understand her decision, although it's a little more difficult for me as I just want her to have as much time as possible.
Tomorrow we start the chemo routine again, which is a little hard to swallow because I hate seeing my mom sick. She's so strong right now and it's great having her back, and within a few days she'll be weak again. Although, the good news is that given her excellent surgical outcome, they have cut her chemo from six cycles (18 weeks) to three cycles (9 weeks), so the sooner she starts the sooner it'll be over.
So that's where things stand.
March has proven to be a huge challenge. There are days when I'm completely exhausted from all of this...the appointments, waiting for results, the day-to-day caretaking, and the continued unknown, etc. This cancer has completely consumed our lives and at times it drains me both mentally and physically. The continued cold weather has not helped either, so I'm putting my money on April to change things around. Until then, I'll continue to think of summer and the various weddings where I'll get to see my favorite ladies -- I really miss my Wooster girls.
I'm spending the month of May in Uganda, so I just need to get through the next month and then I will have a break. Well, kind of, it's still work, but a change of scenery is very welcomed at this point. I really need to get away for a bit and just breathe.
As always, thanks for all the continued love and support.
March 3, 2014
We're home!
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My mom was discharged from the hospital on Friday!
She is so happy to be home and in her own bed. We're doing our best to keep her comfortable, but as we all know, the abdominal area is very tricky and we often forget how much we use our core.
The docs said it will take about 6 weeks for her to feel like herself again, although once chemo is added back into the mix in 2-3 weeks, it'll be interesting.
Next week she gets her staples out, so until then it's bed rest with some short walks down the hallway.
Thanks to more snow and continued frigid temps, I foresee a lot of bad tv in our future. Thank god our weekly shows are back!
February 27, 2014
Post surgery day #2
We received excellent news from the surgeon!
My mom was optimally debulked, which is very, very significant. The term "debulked" refers to the surgical procedure that she had (removal of the ovaries, uterus, cervix, fallopian tubes, greater omentum, and as much visible cancer as possible). Being optimally debulked means that no tumors larger than 1cm are left behind, versus sub-optimally debulking, which often requires more surgery later. Women with advanced ovarian cancer that are optimally debulked have a better outlook than those left with large tumors after surgery.
The surgeon was pleasantly surprised and he said that it went better than expected. He was able to remove every visible sign of cancer and the only cancer remaining is microscopic, which the chemo will zap away.
We're absolutely relieved and thrilled.
After these challenging past few months, I've been restored with hope. I realize we still have some tough roads ahead, but being able to celebrate has felt so good.
My mom is recovering well. As expected, she's in pain, but managing very well. We're all exhausted, although my aunt is the absolute best and has been taking the night shift, which allows me to get sleep at the hotel and tackle the day shift. I can't wait to get my mom home.
Thanks for all of your love, strength, and support -- I honestly have the best friends in the entire world.
My mom was optimally debulked, which is very, very significant. The term "debulked" refers to the surgical procedure that she had (removal of the ovaries, uterus, cervix, fallopian tubes, greater omentum, and as much visible cancer as possible). Being optimally debulked means that no tumors larger than 1cm are left behind, versus sub-optimally debulking, which often requires more surgery later. Women with advanced ovarian cancer that are optimally debulked have a better outlook than those left with large tumors after surgery.
The surgeon was pleasantly surprised and he said that it went better than expected. He was able to remove every visible sign of cancer and the only cancer remaining is microscopic, which the chemo will zap away.
We're absolutely relieved and thrilled.
After these challenging past few months, I've been restored with hope. I realize we still have some tough roads ahead, but being able to celebrate has felt so good.
My mom is recovering well. As expected, she's in pain, but managing very well. We're all exhausted, although my aunt is the absolute best and has been taking the night shift, which allows me to get sleep at the hotel and tackle the day shift. I can't wait to get my mom home.
Thanks for all of your love, strength, and support -- I honestly have the best friends in the entire world.
February 25, 2014
Surgery update
My mom is out of surgery and in recovery.
The surgeon said everything went better than expected and my mom was “optimally” debulked, which is the best possible outcome.
More details to come…
Thanks for all of your love and support.
The surgeon said everything went better than expected and my mom was “optimally” debulked, which is the best possible outcome.
More details to come…
Thanks for all of your love and support.
February 24, 2014
Ready for surgery
We just got the call from the hospital and my
mom's surgery is at 11am tomorrow. She has to be there a few hours
early, so it'll be an early start for our house. We're relieved that
surgery is in the morning because there was a chance that it wouldn't be
until 3pm, which would have meant over 24 hours of no solid foods for
my mom.
I've been in a mood all day -- I suspect it's my nerves. My road rage was on high alert and I've had zero patience for dumb people (who proved to be out in full force today). Yesterday I spent all day in bed fighting off the onset of a cold, so it was a relief to wake-up today feeling much better. I had intentions of making calls to people before tomorrow, but losing yesterday has made it impossible, so my phone dates will have to wait.
Thanks in advance for all of your well wishes, but please don't take it personally if I do not respond to your texts and emails.
We're as ready as we'll ever be, so that's a good feeling heading into tomorrow. The actual surgery will last about 4-5 hours, so hopefully I'll have an update by late afternoon to share. I learned that my new posts are not emailed immediately, instead they're sent overnight, so if you want real-time updates, you'll have to check the blog directly.
Please keep us in your thoughts tomorrow. And to my Wooster swimmers, I we need all the PMA you've got!
xoxo
I've been in a mood all day -- I suspect it's my nerves. My road rage was on high alert and I've had zero patience for dumb people (who proved to be out in full force today). Yesterday I spent all day in bed fighting off the onset of a cold, so it was a relief to wake-up today feeling much better. I had intentions of making calls to people before tomorrow, but losing yesterday has made it impossible, so my phone dates will have to wait.
Thanks in advance for all of your well wishes, but please don't take it personally if I do not respond to your texts and emails.
We're as ready as we'll ever be, so that's a good feeling heading into tomorrow. The actual surgery will last about 4-5 hours, so hopefully I'll have an update by late afternoon to share. I learned that my new posts are not emailed immediately, instead they're sent overnight, so if you want real-time updates, you'll have to check the blog directly.
Please keep us in your thoughts tomorrow. And to my Wooster swimmers, I we need all the PMA you've got!
xoxo
February 20, 2014
Pre-Surgery
FINALLY, some really, really good news!
My apologies for the delay -- initially we received some mixed news and so my mom had to undergo a few more tests to rule out some scary things that they were talking about, but luckily all the tests came back normal!
We met with the oncologist and my mom's scans were "remarkably" improved! Her CA-125 also fell from 70 to 21, so she is now in the normal range (under 35 is considered normal). The best news of all is that she is a candidate for surgery and has been granted medical clearance!
Surgery is on Tuesday (2/25), so we're busy preparing. Dealing with legal docs and health care power of attorney has been quite daunting and a bit scary, but I realize it's all part of the process.
My mom is feeling good and continues to remain very calm about surgery. I'm a little more freaked out about it all, but I just have to keep faith that everything is going to be okay.
Saturday is mom's 60th birthday, so I'm planning some surprises and I hope to have a nice weekend with her and my aunt.
My apologies for the delay -- initially we received some mixed news and so my mom had to undergo a few more tests to rule out some scary things that they were talking about, but luckily all the tests came back normal!
We met with the oncologist and my mom's scans were "remarkably" improved! Her CA-125 also fell from 70 to 21, so she is now in the normal range (under 35 is considered normal). The best news of all is that she is a candidate for surgery and has been granted medical clearance!
Surgery is on Tuesday (2/25), so we're busy preparing. Dealing with legal docs and health care power of attorney has been quite daunting and a bit scary, but I realize it's all part of the process.
My mom is feeling good and continues to remain very calm about surgery. I'm a little more freaked out about it all, but I just have to keep faith that everything is going to be okay.
Saturday is mom's 60th birthday, so I'm planning some surprises and I hope to have a nice weekend with her and my aunt.
End of chemo cycle 3
Again,
I want to thank all of your for your ongoing support. The numerous cards,
packages, calls, emails, and texts have been overwhelming and very much
appreciated.
My mom’s
blood work was extremely low over Christmas, so we were sequestered in an
effort to avoid exposure to any sick people. It made the holidays quite
depressing and lonely, but with the help of Netflix, we made the best of it.
Mom’s
numbers jumped back in early January after she decided to take a week off from
chemo. This decision was a combination of the polar vortex (who wants to go
outside when it’s a high of -15?) and also quality of life – she just needed a break.
It was the best move because when we went back the following week her CA-125
had dropped to 70! (Quick reminder, the CA-125 is a cancer marker that tracks
how the body is responding to chemo). A normal CA-125 is between 0-35. At mom’s
diagnosis she was 867, then 439 after the first chemo cycle, so for it to drop
down to 70 after two cycles was a huge surprise. This made us realize that
sometimes taking a week off for one’s mental health can lead to a very positive
outcome.
In
addition to the day-to-day tasks of being a caretaker, I had to finish packing
up the house, which will go on the market in early March. The contractors
wanted to begin work on Feb. 3rd, so we had to sort and purge through 20 years
of stuff before then, all while my mom battled the side effects of chemo. I
spent almost every day of January in the house boxing up stuff for storage and
coordinating movers, junk haulers, salvation army, etc. We carried away the
last box Saturday, so knowing that the house is complete is an absolute
relief.
Mom
also finished her third cycle of chemo this past week, so she now has three
weeks off before surgery, which has been tentatively scheduled for February 25th.
We meet with the oncologist on February 14th, who will review her CT scan and make a final call on the surgery. It’s possible that he’ll order another cycle of chemo before doing surgery or decide that my mom is not a candidate for surgery. If the oncologist decides to perform surgery on the 25th, then it’s a good sign because he feels the chemo did what it needed (ie, reduced the masses), so now he can go in and remove whatever else is lingering.
We meet with the oncologist on February 14th, who will review her CT scan and make a final call on the surgery. It’s possible that he’ll order another cycle of chemo before doing surgery or decide that my mom is not a candidate for surgery. If the oncologist decides to perform surgery on the 25th, then it’s a good sign because he feels the chemo did what it needed (ie, reduced the masses), so now he can go in and remove whatever else is lingering.
I’m
terrified of the surgery – not just the fear of complications, but the entire
process (the procedure itself and also the recovery). I just know it’s going to
be awful, so I suppose I’m preparing for the worst and hoping for the best. Mom
will have a complete hysterectomy and the surgeon (who is also the oncologist)
will inspect every organ for signs of cancer and remove what he can. Her
incision will be anywhere from 6-9 inches long across her abdomen, so the
recovery is a long and difficult one.
My
aunt is coming for the surgery and she will stay as long as needed. And if all
goes well, I’m going to sneak away the weekend of March 8th for a
wedding in DC. I have missed my DC people very much, so it’ll be nice to see as
many as I can during my short visit.
We’re
currently in Arizona for 10 days. I’m looking forward to relaxing, being
outside, and getting some much needed sun. My aunt is joining us for a few of
the days, so it’ll also be nice to have a break from the constant caretaking,
which is an exhausting job and one that is hard to describe. Surprisingly
though, I’m quite good at it, although there are days where I feel like nothing
I do is good enough to make my mom feel better. Luckily those days are
outnumbered.
I made
the decision to start back at work for a few hours each week, which has helped
my mental sanity. I’m so fortunate to be working for an organization that has
given me the space to do what I need to do and take the time I need before
returning. I’ve decided to make a short trip back to Uganda in late April for a
strategic planning retreat. So if all goes well with mom’s surgery, I’ll be
gone for 3-4 weeks. During this time, some of my mom’s best friends will come
and care for her. It’ll be nice to not only have a break, but also get back to
a place that I love.
Mentally,
I’m really hanging in there. I’m almost surprised by my own strength. I
definitely have my moments, but for the most part I’m making the best of an
awful situation.
I’ll
be sure to keep you guys posted after we meet with the oncologist on the 14th.
I hope
everyone is doing well and getting through this brutal winter.
February 19, 2014
Merry Christmas
12/25/13
Thank you all for the continued support, love, and strength.
I hope each of you have a wonderful holiday with your families and loved ones.
I'll keep this short...
We met with the
oncologist yesterday and received the news that mom's blood work is
headed in the right direction. At the end of each chemo cycle, they take
her CA-125, which is a cancer marker that gives a reliable indication
of whether her body is responding to the treatment. A normal CA-125 is
between 1-35. Mom's initial score was 867 and is now 439 (nearly 50%
drop). At this point, we can celebrate that her body is responding to
the chemo. However, the oncologist warned of placing too much emphasis
on the marker at this early stage since her score will undoubtedly
fluctuate throughout treatment. Also, he wanted to make it clear that we
will not know if her body fully responds to the chemo until she is in
remission for six months. Despite the oncologist's frankness, emotions
were high yesterday as we felt it was the first good news we've
received.
Treatment plan
12/4/13
I'd like to start by thanking everyone for all the wonderful messages of love and support -- they have really helped me get through the last three weeks.
A lot has happened since I've been wheels down in Chicago. We packed up my childhood home, moved into a new apartment in downtown Evanston, chose a treatment plan, hosted Thanksgiving, and my mom has completed two chemo sessions. To say I'm physically and emotionally exhausted does not even begin to explain my reality.
My mom decided to go with Rush University Medical Center because she felt a stronger connection to the medical team and she also thought the lead doctor was a bit more frank about her diagnosis. Since starting treatment, we have been amazed by the nursing staff and the overall quality of care that she has received.
After all her tests came back, it was revealed that she has late stage (stage IV) ovarian cancer with malignant pleural effusion (cancerous fluid build up in the chest cavity with a partially collapsed lung). A quick goggle search will reveal that we have quite a fight ahead of us -- and one we're prepared to give everything we've got.
Since having her lungs drained for the second time,
she has been pain-free, which is an absolute blessing. The side effects
of chemo are difficult, but she is managing them quite well. Her hair
has begun to thin and is expected to be gone by this weekend. It's
amazing how attached we are to our hair without even knowing it, so
we've been trying to mentally prepare for this change. My mom is taking
everything in strides and I'm amazed by her calmness and strength.
I'm doing okay. I think the shock is slowly wearing off. It's amazing how quickly the mind and body switches into survival mode. I'm not at the point where I have good and bad days, it's still hour by hour -- I'll have a few good hours, followed by absolute devastation and sadness. I continue to wake up and hope this was all a bad dream...this cannot be my life. I'd be lying if I said it's getting easier, perhaps the better way to express it is that I'm beginning to accept the situation, but the reality of what is to come is still hard to digest. It is very much day by day here.
I'd like to start by thanking everyone for all the wonderful messages of love and support -- they have really helped me get through the last three weeks.
A lot has happened since I've been wheels down in Chicago. We packed up my childhood home, moved into a new apartment in downtown Evanston, chose a treatment plan, hosted Thanksgiving, and my mom has completed two chemo sessions. To say I'm physically and emotionally exhausted does not even begin to explain my reality.
My mom decided to go with Rush University Medical Center because she felt a stronger connection to the medical team and she also thought the lead doctor was a bit more frank about her diagnosis. Since starting treatment, we have been amazed by the nursing staff and the overall quality of care that she has received.
After all her tests came back, it was revealed that she has late stage (stage IV) ovarian cancer with malignant pleural effusion (cancerous fluid build up in the chest cavity with a partially collapsed lung). A quick goggle search will reveal that we have quite a fight ahead of us -- and one we're prepared to give everything we've got.
The treatment plan is as follows: 9-weekly sessions of
chemo, followed by surgery in mid-February, followed by 18-weeks of
chemo. This takes us to early August, so this is truly a marathon. The
first round of chemo uses a combination of the two most aggressive drugs
available, so they are hitting her body hard. Our mind is focused on
Dec. 23rd because this is the day when we'll find out if the chemo is
working.
I'm doing okay. I think the shock is slowly wearing off. It's amazing how quickly the mind and body switches into survival mode. I'm not at the point where I have good and bad days, it's still hour by hour -- I'll have a few good hours, followed by absolute devastation and sadness. I continue to wake up and hope this was all a bad dream...this cannot be my life. I'd be lying if I said it's getting easier, perhaps the better way to express it is that I'm beginning to accept the situation, but the reality of what is to come is still hard to digest. It is very much day by day here.
Please continue to keep us in your thoughts.
Sharing the news
11/13/13
Thank you so much for all of your love and support over the past few days.
Now
that I'm back in Evanston and have a better idea of the situation, I
wanted to send an email so that you all know what's going on (and for
those of you who are hearing from me for the first time, I wanted to
bring you up to speed). This email is just like me -- honest and direct,
so I apologize for catching anyone off guard.Thank you so much for all of your love and support over the past few days.
My mom has stage 4 metastatic cancer of the genital tract. This
diagnosis came as quite a shock, but we have come to learn that there is little
advance warning that would have allowed this disease to be
caught in its early stages, even for the most conscientious.
The
reality is that no time is ever enough with our loved ones and this is
what I continue to struggle with daily. The thought that my mom may not
be here to see me get married or meet my children brings me to my knees.
At times the pain is unbearable and I have to remind myself to breathe.
I have never felt pain like this and there have been moments when I'm
unsure how I will proceed.
For my mom's sake, I must stop dwelling on the time and instead focus on her treatment and make sure that the details of her daily living are covered. We are going to do everything in our power to compliment the treatment with healthy eating, herbal supplements, and other non traditional approaches. My mom is not going to give-up without a fight.
For my mom's sake, I must stop dwelling on the time and instead focus on her treatment and make sure that the details of her daily living are covered. We are going to do everything in our power to compliment the treatment with healthy eating, herbal supplements, and other non traditional approaches. My mom is not going to give-up without a fight.
The
immediate change coming is that we are moving into a condo in downtown
Evanston because my mom needs to be on a single level and we also need
to get the house ready to go on the market in the spring. So for now we
are busy packing and getting ready to move.
My
aunt is here from Austin, which is an absolute blessing, and my uncle
and aunt from DC are coming for Thanksgiving. The family has taken the
news quite hard, but we're leaning on one another to make sense of the
situation and bring comfort to my mom.
The
good news is that my mom is not in much pain right now, so that brings
some relief, although the fear of what is to come is incredibly
difficult for me to digest.
I'm not sure when/if I'll return to Uganda, but for now I'm taking it one day at a time and I will at least be here until the spring. I feel very fortunate that this has come at a time when I can drop everything and be by her side.
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