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.)
Sunday, August 13, 2017
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.
Thursday, July 27, 2017
Derailed and Pretty Devastated
I had my pre-op appointments on July 20. I had abdominal and pelvic ultrasounds, and then I had a general physical and bloodwork. I was also asked to join a research study regarding hormones from birth control and their potential in helping to delay or stop a woman from ever getting ovarian cancer. Of course I joined the study. And all seemed to go well that day.
Until I was on my way home.
As I was stuck in traffic while driving home, I got a call from Dr. P. (onc gyn). He informed me that a 1.5" mass/tumor had been found in my bladder. It is believed, though not yet confirmed, to be bladder cancer. He referred me to an oncological urologist (Dr. H.). He let me know that at this point, the tumor is priority. I still have surgery scheduled with him on August 4, but that may not happen, depending on what happens with Dr. H. and the tumor.
I have an appointment for a cystoscopy in Dr. H.'s clinic in Livonia tomorrow. This is done with a camera in your urethra. This will give her a good look at what's going on. She said that we'll most likely do surgery next week to scrape out the tumor. It will then be sent to pathology and we'll go from there. Dr. H. also believes it is likely bladder cancer. If you're keeping track, the radiologist believes it is too. So yeah, I most likely have cancer.
And I am scared and mad.
I had prepared myself for breast cancer and ovarian cancer as much as I could. No other type of cancer even crossed my mind. This is so from left field.
I have had some symptoms, but they're the same symptoms that made me think I may actually have ovarian cancer (some symptoms can indicate either of those cancers or completely different things). They're also the symptoms that have had me thinking that I'm starting to go into the early stages of menopause. So I have been brushing the symptoms off as those things, knowing I was either taking care of it already (ovarian cancer with my oophorectomy) or just going to have to deal with it as part of life (early menopause).
As mentioned, I'm still scheduled for my oophorectomy on the 4th. I'm truly prepared to beg Dr. H. to remove the tumor in the same surgery. Here's the thing: I might not be allowed to have two surgeries close together but would be allowed to at the same time. If Dr. H. decides to do surgery early next week, I may not be allowed to have surgery on Friday. Or if the pathology comes back showing that I do indeed have cancer, treatment for that may mean I can't have the oophorectomy until after that treatment is done. And that could be a short time or a long time. If it's a long time, I'm going to be scared to death constantly that ovarian cancer has developed and is unknown and untreated. I think my anxiety would be ridiculously overwhelming if that were the case. I'm already anxious about it.
So tomorrow is a big day. And I'm scared about it. My husband is going with me. We'll get through this. We have to.
I finally told my husband's parents what's going on; all of it. And while my sister was already aware of the BRCA1 stuff, I told her about the tumor too. Those were two of the hardest conversations I've ever had. Soon we'll have to tell my kids what's going on. That will likely be the hardest conversation I've ever had and likely ever will have.
Wish me luck. Pray. Whatever you do that makes good things happen, I'll take it.
Until I was on my way home.
As I was stuck in traffic while driving home, I got a call from Dr. P. (onc gyn). He informed me that a 1.5" mass/tumor had been found in my bladder. It is believed, though not yet confirmed, to be bladder cancer. He referred me to an oncological urologist (Dr. H.). He let me know that at this point, the tumor is priority. I still have surgery scheduled with him on August 4, but that may not happen, depending on what happens with Dr. H. and the tumor.
I have an appointment for a cystoscopy in Dr. H.'s clinic in Livonia tomorrow. This is done with a camera in your urethra. This will give her a good look at what's going on. She said that we'll most likely do surgery next week to scrape out the tumor. It will then be sent to pathology and we'll go from there. Dr. H. also believes it is likely bladder cancer. If you're keeping track, the radiologist believes it is too. So yeah, I most likely have cancer.
And I am scared and mad.
I had prepared myself for breast cancer and ovarian cancer as much as I could. No other type of cancer even crossed my mind. This is so from left field.
I have had some symptoms, but they're the same symptoms that made me think I may actually have ovarian cancer (some symptoms can indicate either of those cancers or completely different things). They're also the symptoms that have had me thinking that I'm starting to go into the early stages of menopause. So I have been brushing the symptoms off as those things, knowing I was either taking care of it already (ovarian cancer with my oophorectomy) or just going to have to deal with it as part of life (early menopause).
As mentioned, I'm still scheduled for my oophorectomy on the 4th. I'm truly prepared to beg Dr. H. to remove the tumor in the same surgery. Here's the thing: I might not be allowed to have two surgeries close together but would be allowed to at the same time. If Dr. H. decides to do surgery early next week, I may not be allowed to have surgery on Friday. Or if the pathology comes back showing that I do indeed have cancer, treatment for that may mean I can't have the oophorectomy until after that treatment is done. And that could be a short time or a long time. If it's a long time, I'm going to be scared to death constantly that ovarian cancer has developed and is unknown and untreated. I think my anxiety would be ridiculously overwhelming if that were the case. I'm already anxious about it.
So tomorrow is a big day. And I'm scared about it. My husband is going with me. We'll get through this. We have to.
I finally told my husband's parents what's going on; all of it. And while my sister was already aware of the BRCA1 stuff, I told her about the tumor too. Those were two of the hardest conversations I've ever had. Soon we'll have to tell my kids what's going on. That will likely be the hardest conversation I've ever had and likely ever will have.
Wish me luck. Pray. Whatever you do that makes good things happen, I'll take it.
Thursday, June 22, 2017
Onward
And we have progress.
My appointment with the most amazing BRCA-specialist oncological gynecologist ever could not have gone better. I know I'm doing the right thing and am in the best of hands. Dr. Pearlman is literally one of the pioneers in BRCA detection and treatment. He was the doctor of the first family in which the BRCA1 mutation was discovered. He literally writes the national recommendations on what to do for this gene mutation treatment. He used to work side by side with Dr. Francis Collins, leader of the Human Genome Project and current head of the NIH. Good hands, people, miracle hands.
So my BSO is scheduled for August 4. Recovery *should* only be a week. I got to pick the date. I have it scheduled at a time that still allowed us to take our summer vacation, still pick my daughter up from camp and watch her orchestra perform at camp, and heal in time to go to the fundraiser walk to Joana's scholarship and not miss any of Josh's football games or the games Meghan will be cheering at. I know things could go awry, but they likely won't and this schedule works great for my family :)
It's still surgery, so I'm still nervous, but I don't have even an ounce of doubt that it's the right thing to do and I know that I couldn't be in better hands.
Soon, likely early next week, I'll call both my breast surgeon and plastic surgeon again to talk about scheduling my PBMX and (likely) DIEP flap reconstruction. I'll have those procedures after the BSO. If the schedule works out to my preference, I'll have the PBMX yet this year so I don't have to pay another year of my (stupid high) deductible. But I may decide to wait until spring so I get paid for my time off of work. Decisions I'll make later (but soon).
Now on to my personal mission to lose as much weight as safely possible before August 4.
My appointment with the most amazing BRCA-specialist oncological gynecologist ever could not have gone better. I know I'm doing the right thing and am in the best of hands. Dr. Pearlman is literally one of the pioneers in BRCA detection and treatment. He was the doctor of the first family in which the BRCA1 mutation was discovered. He literally writes the national recommendations on what to do for this gene mutation treatment. He used to work side by side with Dr. Francis Collins, leader of the Human Genome Project and current head of the NIH. Good hands, people, miracle hands.
So my BSO is scheduled for August 4. Recovery *should* only be a week. I got to pick the date. I have it scheduled at a time that still allowed us to take our summer vacation, still pick my daughter up from camp and watch her orchestra perform at camp, and heal in time to go to the fundraiser walk to Joana's scholarship and not miss any of Josh's football games or the games Meghan will be cheering at. I know things could go awry, but they likely won't and this schedule works great for my family :)
It's still surgery, so I'm still nervous, but I don't have even an ounce of doubt that it's the right thing to do and I know that I couldn't be in better hands.
Soon, likely early next week, I'll call both my breast surgeon and plastic surgeon again to talk about scheduling my PBMX and (likely) DIEP flap reconstruction. I'll have those procedures after the BSO. If the schedule works out to my preference, I'll have the PBMX yet this year so I don't have to pay another year of my (stupid high) deductible. But I may decide to wait until spring so I get paid for my time off of work. Decisions I'll make later (but soon).
Now on to my personal mission to lose as much weight as safely possible before August 4.
Today's the day
My appointment with the oncological gynecologist is this afternoon. And my anxiety is pretty high about it.
I want to go. I've heard great things about this doctor (two of my husband's cousins have gone to him and had him do their oophorectomies, both being BRCA1+). He specializes in BRCA mutations.
And I'm scared too. I finally know, thanks to my MRI, that I don't have breast cancer (yet). But I don't know that about ovarian cancer. And ovarian cancer is harder to "monitor for" and harder to treat if you do have it.
So today, I'm praying that I don't have ovarian cancer and that the doc has a recommendation (oophorectomy or hysterectomy) and that we can get it scheduled.
My sister is going to my appointment with me today. I have very mixed feelings about this. It's a gyn visit, which is always best attended alone in my mind, BUT... I may get bad news today. And my sister is a busy person who I don't get to see often. So I feel like the fact that she is available to go and asked me if she can go with me means that maybe she's meant to be there today. Maybe there's a reason it's working out that way.
So yeah. Back to anxiety and fear. And hope and planning.
This journey is no fun at all.
I want to go. I've heard great things about this doctor (two of my husband's cousins have gone to him and had him do their oophorectomies, both being BRCA1+). He specializes in BRCA mutations.
And I'm scared too. I finally know, thanks to my MRI, that I don't have breast cancer (yet). But I don't know that about ovarian cancer. And ovarian cancer is harder to "monitor for" and harder to treat if you do have it.
So today, I'm praying that I don't have ovarian cancer and that the doc has a recommendation (oophorectomy or hysterectomy) and that we can get it scheduled.
My sister is going to my appointment with me today. I have very mixed feelings about this. It's a gyn visit, which is always best attended alone in my mind, BUT... I may get bad news today. And my sister is a busy person who I don't get to see often. So I feel like the fact that she is available to go and asked me if she can go with me means that maybe she's meant to be there today. Maybe there's a reason it's working out that way.
So yeah. Back to anxiety and fear. And hope and planning.
This journey is no fun at all.
Friday, May 5, 2017
Nightmares
I thought this would be a quiet time. I don't have another appointment related to this BRCA1+ nonsense until June 22. I was looking forward to being able to just "be" for a while.
But I've been having nightmares.
I haven't had a nightmare in a really long time. But as of last week, they're back. All very specifically related to this whole process, as the nightmares feature the surgery for the mastectomy and reconstruction. Last night's nightmare literally made me hyperventilate and sob. I woke up crying hard and having trouble breathing.
Even when you think it's not on your mind, it is. And it's horrible.
But I've been having nightmares.
I haven't had a nightmare in a really long time. But as of last week, they're back. All very specifically related to this whole process, as the nightmares feature the surgery for the mastectomy and reconstruction. Last night's nightmare literally made me hyperventilate and sob. I woke up crying hard and having trouble breathing.
Even when you think it's not on your mind, it is. And it's horrible.
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