I've had another setback in this. Due to doctors' schedules, coordinating two surgeons, and required wait time between two surgeries, I literally cannot get everything done this year. A cancellation won't fix it because of the required wait time (even though they did lessen it for me from what it originally was) and the fact that the first date I'd be eligible for the biggest surgery would be December 29, when neither of the surgeons is doing surgeries due to the holidays.
So I've decided to focus on the positive. That last surgery is huge, risky, and long. It is on average a 12-hour surgery. The better health I'm in, the less risks there are to me and the easier recovery will be for me. So I'm going to focus on weight loss and getting into shape between now and then. Then again, I also have two surgeries between now and then, so I'll focus on healing well too. And truly, this puts at their ideal wait time between surgeries, so it's probably better for me anyway.
As for the bladder cancer, I'm feeling fine. Two weeks until my CT urogram and then three days after that until my repeat TURBT. Still hoping and praying that they find nothing.
And hey... I should be healed enough that week to go to my son's football game on take him on a college visit at the end of the week. Life goes on (because it has to).
Tuesday, August 29, 2017
Tuesday, August 22, 2017
Stupid BRCA Mutations
Just feeling emotional and sad today.
One of my coworkers just got the news yesterday that she's positive for the BRCA2 mutation. A friend of mine is waiting for her appointment with a geneticist to schedule her testing, as her mom is positive for the BRCA2 mutation.
Prior to Angelina Jolie's experience, I had never heard of BRCA mutations. Prior to finding out that's what made cancer so rampant in my dad's family, I had no clue I was at risk for this. Prior to my BRCA1 mutation diagnosis, I had no clue anyone in "my circle" was affected by it. Now I know that many of my relatives are positive, some of my husband's cousins are positive (it runs on the other side of the family so my kids don't have a double whammy), and some of my friends are positive or at risk.
And it just makes me sick. Sick to my stomach, sick in my heart. I'm so glad we have the chance to find out about the mutation before it's too late, but I wish we didn't have to deal with this.
Life is really unfair sometimes.
One of my coworkers just got the news yesterday that she's positive for the BRCA2 mutation. A friend of mine is waiting for her appointment with a geneticist to schedule her testing, as her mom is positive for the BRCA2 mutation.
Prior to Angelina Jolie's experience, I had never heard of BRCA mutations. Prior to finding out that's what made cancer so rampant in my dad's family, I had no clue I was at risk for this. Prior to my BRCA1 mutation diagnosis, I had no clue anyone in "my circle" was affected by it. Now I know that many of my relatives are positive, some of my husband's cousins are positive (it runs on the other side of the family so my kids don't have a double whammy), and some of my friends are positive or at risk.
And it just makes me sick. Sick to my stomach, sick in my heart. I'm so glad we have the chance to find out about the mutation before it's too late, but I wish we didn't have to deal with this.
Life is really unfair sometimes.
Monday, August 21, 2017
The Diagnosis and Updates
Caught up in life, I haven't posted in a while. The good news is that there's good news. :)
I was officially diagnosed with low-grade papillary carcinoma. So yes, I have bladder cancer. But the doctor thinks she got it all out during the TURBT. Because of an "unusual inverted growth pattern", she is planning to do a repeat TURBT. If there is no regrowth then, we'll move on to monitoring endoscopically in the office (through cystoscopies, I assume) as long as need be. In her words "we'll be seeing a lot of each other for a long time." I'm okay with that. The reassurances will be good, as bladder cancer is one that often reoccurs.
Dr. H. said she expected from the beginning that she'd have bad news for me at this point. She really thought it was much worse, as did I. I cried when she gave me my diagnosis, but they were 100% tears of relief. I was prepared to be told I have cancer (I knew it in my heart and my head); the actual status of my cancer was a complete relief. I was prepared for and expecting the worst.
I am scheduled for a CT urogram (to see if the cancer has spread at all) on September 15 and the repeat TURBT on September 18.
Dr. H.'s scheduler initially wanted to do both the CT urogram and TURBT on October 16. I asked if we can do it earlier due to the other surgeries (oophorectomy and mastectomy with reconstruction) I hope to get done this year. I got the call today that everything was able to be moved up a month. Dr. H. is incredible and understanding.
We did tell the kids I have cancer. We apparently prepared them well, as literally none of them cried when I told them. I had good news and a solid plan to share, so they are basically just supportive and relieved. I'm so grateful for that.
So on we go. A little peace until September 15.
I have a message into Dr. P.'s office, asking him to call me. I'm hoping he'll be willing to let me get on his schedule for October 13 for my oophorectomy. And then I'm hoping for my mastectomy and reconstruction between November 24 and December 1. Getting it all done this year will be a HUGE financial relief and not waiting and worrying longer will be a huge emotional/mental relief.
I was officially diagnosed with low-grade papillary carcinoma. So yes, I have bladder cancer. But the doctor thinks she got it all out during the TURBT. Because of an "unusual inverted growth pattern", she is planning to do a repeat TURBT. If there is no regrowth then, we'll move on to monitoring endoscopically in the office (through cystoscopies, I assume) as long as need be. In her words "we'll be seeing a lot of each other for a long time." I'm okay with that. The reassurances will be good, as bladder cancer is one that often reoccurs.
Dr. H. said she expected from the beginning that she'd have bad news for me at this point. She really thought it was much worse, as did I. I cried when she gave me my diagnosis, but they were 100% tears of relief. I was prepared to be told I have cancer (I knew it in my heart and my head); the actual status of my cancer was a complete relief. I was prepared for and expecting the worst.
I am scheduled for a CT urogram (to see if the cancer has spread at all) on September 15 and the repeat TURBT on September 18.
Dr. H.'s scheduler initially wanted to do both the CT urogram and TURBT on October 16. I asked if we can do it earlier due to the other surgeries (oophorectomy and mastectomy with reconstruction) I hope to get done this year. I got the call today that everything was able to be moved up a month. Dr. H. is incredible and understanding.
We did tell the kids I have cancer. We apparently prepared them well, as literally none of them cried when I told them. I had good news and a solid plan to share, so they are basically just supportive and relieved. I'm so grateful for that.
So on we go. A little peace until September 15.
I have a message into Dr. P.'s office, asking him to call me. I'm hoping he'll be willing to let me get on his schedule for October 13 for my oophorectomy. And then I'm hoping for my mastectomy and reconstruction between November 24 and December 1. Getting it all done this year will be a HUGE financial relief and not waiting and worrying longer will be a huge emotional/mental relief.
Sunday, August 13, 2017
Tomorrow is the day
I have two doctor appointments tomorrow. At 9am, I meet with my urologist to get the pathology from my TURBT. At 10:30am, I meet with the new geneticist.
I am anxious. But as I think about what to type, I don't even know what I think any more.
I am fully expecting bad news from Dr. H. Bad news as in "You have bladder cancer." I think I'm even expecting really bad news, as in "You need your bladder out very soon." If I have to have my bladder removed, I am wondering if it will involve chemo at all. Some have chemo beforehand, some have it after. I'm wondering if it would result in a neobladder (part of your intestine is used to make a new bladder) or a stoma/urostomy (external bag that collects urine when you don't have a bladder). I'm wondering when any and/or all of those things would happen. I'm wondering how this will affect me working (two jobs, so not much down time). I'm wondering how it'll make me feel physically and emotionally. I'm wondering how it will affect me being able to attend my kids' events (football, cheer, back-to-school events). I'm wondering how it will affect my family.
I am hoping for a miracle. I am hoping for "We got everything out during the TURBT and it's a grade that hadn't spread." I am hoping for "We'll just keep an eye on things through ultrasound or cystoscopy."
At this point, I just want answers. I can handle anything. I have prepared my older two children for a cancer diagnosis. I am ready to fight. We just need to get moving.
I'm finding it hard to think about anything else. I keep unintentionally trying to read into things. My TURBT was quick and my recovery was easy compared to many of the stories I read online. Is that because it was easy to get out or is that because it was so bad, they didn't take it all out and figured it will come out when they remove the bladder? But I try to stop thinking about it because I won't have answers to those questions until tomorrow.
Tomorrow.
The day everything will change.
One way or another. Either I'll be celebrating a miracle or I'll be planning the biggest battle I've ever fought.
Tomorrow.
(As for the geneticist appointment, it just feels like an afterthought. I need to talk to her, mostly to ask about other risks with my mutation and about when my kids should be tested. I have no worries or hesitation about this appointment; it's just one to check off the to-do list in this BRCA journey.)
I am anxious. But as I think about what to type, I don't even know what I think any more.
I am fully expecting bad news from Dr. H. Bad news as in "You have bladder cancer." I think I'm even expecting really bad news, as in "You need your bladder out very soon." If I have to have my bladder removed, I am wondering if it will involve chemo at all. Some have chemo beforehand, some have it after. I'm wondering if it would result in a neobladder (part of your intestine is used to make a new bladder) or a stoma/urostomy (external bag that collects urine when you don't have a bladder). I'm wondering when any and/or all of those things would happen. I'm wondering how this will affect me working (two jobs, so not much down time). I'm wondering how it'll make me feel physically and emotionally. I'm wondering how it will affect me being able to attend my kids' events (football, cheer, back-to-school events). I'm wondering how it will affect my family.
I am hoping for a miracle. I am hoping for "We got everything out during the TURBT and it's a grade that hadn't spread." I am hoping for "We'll just keep an eye on things through ultrasound or cystoscopy."
At this point, I just want answers. I can handle anything. I have prepared my older two children for a cancer diagnosis. I am ready to fight. We just need to get moving.
I'm finding it hard to think about anything else. I keep unintentionally trying to read into things. My TURBT was quick and my recovery was easy compared to many of the stories I read online. Is that because it was easy to get out or is that because it was so bad, they didn't take it all out and figured it will come out when they remove the bladder? But I try to stop thinking about it because I won't have answers to those questions until tomorrow.
Tomorrow.
The day everything will change.
One way or another. Either I'll be celebrating a miracle or I'll be planning the biggest battle I've ever fought.
Tomorrow.
(As for the geneticist appointment, it just feels like an afterthought. I need to talk to her, mostly to ask about other risks with my mutation and about when my kids should be tested. I have no worries or hesitation about this appointment; it's just one to check off the to-do list in this BRCA journey.)
Tuesday, August 8, 2017
So much running through my head...
So we told the older two kids on Saturday what's going on. My second oldest, M, left for camp on Sunday so I needed to let her process it before she left. We told them pretty much everything about the bladder issue but didn't talk about the BRCA stuff yet. I told my younger two kids on Sunday. They were concerned, but that was quickly forgotten as they got excited that they were going to get to sleep over at my friend's house on Monday.
Because Monday was surgery day.
My appointment with the new geneticist was supposed to be yesterday. But I had to reschedule it due to surgery now being the same day. I rescheduled the geneticist for August 14 (fortunately for me, she had a cancellation).
So I had my TURBT yesterday.
My husband and his mom went with me. Everything went as well as I could have asked for. I cried less than I thought I would, my nurses were fantastic, my doctor was as awesome as expected, the surgery was supposed to take two hours but only took about 45 minutes. I came out of anesthesia easily. I didn't have to come home with a catheter. As soon as they took the catheter out, I needed to use the bathroom. I did and had no pain or blood. All really did go well.
Before the surgery, I asked Dr. H. when the pathology report would be back. She said it'd be a week so she'd see me in clinic on Tuesday. Since I have to be in Ann Arbor on Monday for the geneticist appointment, I asked if there's any way we can meet Monday instead. She literally pulled out her phone, looked at her calendar, and said "We'll make it happen." She is that amazing. This afternoon, I messaged her office through the hospital's online portal. I asked if a time had been scheduled for Monday yet. Twenty minutes later, I got this reply from her (directly from her, not someone in her office):
"Hi Deanna,
We are still working on it but will get back to you ASAP. Hope you're feeling ok. See you Monday (time TBD).
Lindsey"
She is simply wonderful. And I know that in her care, I will be okay.
But this is all still damn scary. I've told a few more people as they've asked questions. But now I'm feeling overwhelmed with all of the questions and the sorrow from people, so I'm starting to retreat. I think I'm more comfortable keeping things to myself for the most part. I've never been one to share much personal stuff and I don't think this is the time to start.
I've felt pretty good since my surgery. I haven't taken a pain med since I was in the hospital (by my choice). I have been urinating fine and have been eating. I have some pain today but it's bearable so it's okay. It hurts my back and my abdomen (where I'm assuming my bladder is located) to sit straight up for more than a few minutes. But it's bearable so it's okay.
I worked from home today and have the option to do that as long as I feel I need to. I'm going to try to work in my office tomorrow. Keeping up the norm, as my doctor recommended.
My head is a mess, or at least it feels that way to me. So much going on, so much to think about, so much I wish I could stop thinking about. In all of this, waiting is one of the hardest parts.
But now we wait, for six. long. days.
Because Monday was surgery day.
My appointment with the new geneticist was supposed to be yesterday. But I had to reschedule it due to surgery now being the same day. I rescheduled the geneticist for August 14 (fortunately for me, she had a cancellation).
So I had my TURBT yesterday.
My husband and his mom went with me. Everything went as well as I could have asked for. I cried less than I thought I would, my nurses were fantastic, my doctor was as awesome as expected, the surgery was supposed to take two hours but only took about 45 minutes. I came out of anesthesia easily. I didn't have to come home with a catheter. As soon as they took the catheter out, I needed to use the bathroom. I did and had no pain or blood. All really did go well.
Before the surgery, I asked Dr. H. when the pathology report would be back. She said it'd be a week so she'd see me in clinic on Tuesday. Since I have to be in Ann Arbor on Monday for the geneticist appointment, I asked if there's any way we can meet Monday instead. She literally pulled out her phone, looked at her calendar, and said "We'll make it happen." She is that amazing. This afternoon, I messaged her office through the hospital's online portal. I asked if a time had been scheduled for Monday yet. Twenty minutes later, I got this reply from her (directly from her, not someone in her office):
"Hi Deanna,
We are still working on it but will get back to you ASAP. Hope you're feeling ok. See you Monday (time TBD).
Lindsey"
She is simply wonderful. And I know that in her care, I will be okay.
But this is all still damn scary. I've told a few more people as they've asked questions. But now I'm feeling overwhelmed with all of the questions and the sorrow from people, so I'm starting to retreat. I think I'm more comfortable keeping things to myself for the most part. I've never been one to share much personal stuff and I don't think this is the time to start.
I've felt pretty good since my surgery. I haven't taken a pain med since I was in the hospital (by my choice). I have been urinating fine and have been eating. I have some pain today but it's bearable so it's okay. It hurts my back and my abdomen (where I'm assuming my bladder is located) to sit straight up for more than a few minutes. But it's bearable so it's okay.
I worked from home today and have the option to do that as long as I feel I need to. I'm going to try to work in my office tomorrow. Keeping up the norm, as my doctor recommended.
My head is a mess, or at least it feels that way to me. So much going on, so much to think about, so much I wish I could stop thinking about. In all of this, waiting is one of the hardest parts.
But now we wait, for six. long. days.
Friday, August 4, 2017
No surgery today. An update...
The cystoscopy almost didn't happen. I had to give a urine sample and it showed that I have a UTI. But Dr. H. gave me some Bactrim and went ahead with the cystoscopy anyway. I could hear them talking outside my door about how they needed to because of what the ultrasound showed.
I was able to watch the monitor during the cystoscopy. It's weird seeing inside your urethra and bladder. Things I never imagined I'd see. And there are two tumors. Also things I never imagined I'd have or see. I have to have the tumors removed and sent to pathology.
So, yeah... no surgery today. Dr. H. didn't want Dr. P. doing the oophorectomy at the same time as the removal of the tumors (TURBT). The oophorectomy requires inflating my abdomen with gas; the TURBT does not. In case I need a bigger surgery (such as having my bladder removed) soon, she doesn't want that being messed with for now. If I don't need my bladder removed, Dr. P. says we can do the oophorectomy three to four weeks after the TURBT.
And I'm having the TURBT on Monday.
Which means I'll likely have pathology back on the tumors by the end of next week.
I'm glad things are moving quickly, because I'll know for sure whether or not I have cancer and I'll know what the treatment plan is if I do and we can get started on that treatment plan. But it's all still really scary.
I have told a couple more people what's going on and am finding it hard but comforting. I have always known that I have awesome family and friends, and I love that I'm seeing it so strongly right now.
We haven't told the kids yet. I'm waiting for a call back today from the pre-op department with my surgery time. We'll tell the kids tomorrow. One of my daughters, M, leaves for camp on Sunday and I know she's going to be upset. We're telling J (age 17) and M (age 14) separately from L (age 11) and C (age 7) because of how we think they'll react. And then once we tell the kids, I'll be sending an email to some family members and friends who I want to know at this point. After pathology comes back, I'm sure I'll be sending an email to others who need to be filled in. Telling people any of this is one of the hardest parts. I appreciate the support but the sadness and pity gets tough and awkward.
So now we wait until Monday.
I was able to watch the monitor during the cystoscopy. It's weird seeing inside your urethra and bladder. Things I never imagined I'd see. And there are two tumors. Also things I never imagined I'd have or see. I have to have the tumors removed and sent to pathology.
So, yeah... no surgery today. Dr. H. didn't want Dr. P. doing the oophorectomy at the same time as the removal of the tumors (TURBT). The oophorectomy requires inflating my abdomen with gas; the TURBT does not. In case I need a bigger surgery (such as having my bladder removed) soon, she doesn't want that being messed with for now. If I don't need my bladder removed, Dr. P. says we can do the oophorectomy three to four weeks after the TURBT.
And I'm having the TURBT on Monday.
Which means I'll likely have pathology back on the tumors by the end of next week.
I'm glad things are moving quickly, because I'll know for sure whether or not I have cancer and I'll know what the treatment plan is if I do and we can get started on that treatment plan. But it's all still really scary.
I have told a couple more people what's going on and am finding it hard but comforting. I have always known that I have awesome family and friends, and I love that I'm seeing it so strongly right now.
We haven't told the kids yet. I'm waiting for a call back today from the pre-op department with my surgery time. We'll tell the kids tomorrow. One of my daughters, M, leaves for camp on Sunday and I know she's going to be upset. We're telling J (age 17) and M (age 14) separately from L (age 11) and C (age 7) because of how we think they'll react. And then once we tell the kids, I'll be sending an email to some family members and friends who I want to know at this point. After pathology comes back, I'm sure I'll be sending an email to others who need to be filled in. Telling people any of this is one of the hardest parts. I appreciate the support but the sadness and pity gets tough and awkward.
So now we wait until Monday.
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