Another uneventful trip to the Cancer Treatment Center in Atlanta! Actually, the most stressful part was wondering how our travel to ATL would be affected with Hurricane Dorian lingering off the coast. Fortunately, we really didn't see any delays due to weather and everything was pretty calm when we returned home afterwards. We are very grateful for the small victories when we get them.
Mom's tumor markers continue to decline (as revealed in her labs), so we press on with her immunotherapy/chemotherapy combination treatment since it's continuing to make a difference. I am constantly intrigued about what happens when things kind of plateau, because her numbers are getting lower (that's good), even venturing into the "normal" range. So, I'm wondering what happens when her numbers get as low as they're going to go. This type of treatment in breast cancer is so new, I think it's hard to really know what comes next, but we are happy that she is in a stable period now.
She's still battling side effects after treatment, but it is SO predictable with what to expect, down to the day and time of day she can expect to feel the worst. When she gets treatment on a Wednesday afternoon, you can expect Saturday night into Sunday morning to be her worst time. However, when she gets treatment on Thursday afternoon, it's Sunday night into Monday morning. By Sunday afternoon/Monday afternoon, she begins to rebound a bit and it gradually gets better as the week progresses.
That is also something to be grateful for, since she can start planning to try to have a normal life during the expected good periods before her next treatment. She currently has 2 trips planned for this month, and I know she's relieved to do something other than recover from a hip replacement, prep for a hurricane, or travel for cancer treatment. Things to look forward to are always a plus, so we will continue to make plans for her into the Fall season! I smell a Vegas trip in her future. 😛💸
Reminder: **If you plan to leave a comment on THIS blog, please make sure you sign your name with the comments because we can't tell who it's from if you don't! I'd love to relay your well wishes to her and it definitely lifts her spirits! 💞
Tuesday, September 10, 2019
Wednesday, August 28, 2019
Start of Cycle 3!
Another boring trip to ATL in the books! Those are the ones we like. We were able to meet with mom's same crew of doctors, except for her new oncologist - she is a new addition.
We got there on Tuesday morning (super early) and waited basically all day for mom to get her labs, and then get a CT. On Wednesday, she had her [now usual] echocardiogram to see if the effusion on her pericardium was any bigger. Her cardiologist, Dr. Glass, was pleased to see that it actually looked like it was possibly a bit smaller this time. Hayyyy! 🙌That was the first bit of good news for the trip (but wait, there's more..)!
After that appointment, we met with Dr. Parks, her pulmonary doctor. We cannot say enough good things about this doctor. He is SO thorough, so pleasant, and apparently very good at what he does because he has really helped mom's cough. 🎉He lets us see Mom's scans and will show us basically anything we want to see and takes as much time as we need. He also does his best to explain everything until we understand what he is saying. And this time, he showed us Mom's most recent CT and he said the nodules in her lungs do look to be a little smaller from the impromptu scan a month before. Not only that, but the fluid at the bottom of her lung was almost completely gone! When all of this started again in May, she had a lymph node that sits between her lungs and it was enlarged (because we found out there was a tumor), BUT now there is no evidence that is enlarged anymore. There still may be something in there, but it seems to have shrunk at the least.
So, what does all of this mean?!
Well, after hearing that her labs showed that 2 of her tumor markers had come down AGAIN, basically to normal levels, on top of everything else, I somehow got my hopes up that they would say to Mom, "Hey, you're probably exhausted after everything you've endured this summer - let's take a break and monitor." Looking back, that was not my smartest assumption, because the treatment is clearly working, so of course, they wouldn't just stop when it could possibly reduce her numbers and tumors even more. So, we met with her new oncologist, Dr. Pabatthi, and her recommendation was to stay the current course, and to do another CT in November. So, we told her that we were hoping there'd be a break sooner than that. She did say that if Mom decided she just needed to skip a treatment or 2 to regain her strength and a better mentality (if it got to that point because for now, she is actually feeling pretty good, considering), they said that they would gladly pause the treatment. But, it didn't sound like they would be recommending her to stop treatment, unless symptoms got worse, or unless there was evidence that the cancer began progressing again (probably indicative through labs).
My one disappointment this trip was in meeting her new oncologist. She was friendly and everything you'd want in an oncologist in that regard, but it seemed like she was literally reading mom's chart for the first time in front of us. We had to correct her several times on details, and it didn't do a lot for my confidence level. There was one thing she said when mom and I looked at each other in a panic because it went against everything that we heard in the previous appointment. It's early, but that really did put a damper on my first impression. Clearly there are worse things, so I'm just trying to be grateful for the good things that came from the trip.
She is still getting around pretty well on her hip, and I even noticed when I got to her house last week, that she was moving around considerably better. So really, it's progress all around. 😌
Here's hoping we have more boring trips to ATL in our future, that bring only good news. We do have a fun trip to New Orleans planned for the end of September with some cousins, so we have something to look forward to... and something for mom to work towards so that she is able to walk around and enjoy the bayou with ease. 🐊
We got there on Tuesday morning (super early) and waited basically all day for mom to get her labs, and then get a CT. On Wednesday, she had her [now usual] echocardiogram to see if the effusion on her pericardium was any bigger. Her cardiologist, Dr. Glass, was pleased to see that it actually looked like it was possibly a bit smaller this time. Hayyyy! 🙌That was the first bit of good news for the trip (but wait, there's more..)!
After that appointment, we met with Dr. Parks, her pulmonary doctor. We cannot say enough good things about this doctor. He is SO thorough, so pleasant, and apparently very good at what he does because he has really helped mom's cough. 🎉He lets us see Mom's scans and will show us basically anything we want to see and takes as much time as we need. He also does his best to explain everything until we understand what he is saying. And this time, he showed us Mom's most recent CT and he said the nodules in her lungs do look to be a little smaller from the impromptu scan a month before. Not only that, but the fluid at the bottom of her lung was almost completely gone! When all of this started again in May, she had a lymph node that sits between her lungs and it was enlarged (because we found out there was a tumor), BUT now there is no evidence that is enlarged anymore. There still may be something in there, but it seems to have shrunk at the least.
So, what does all of this mean?!
Well, after hearing that her labs showed that 2 of her tumor markers had come down AGAIN, basically to normal levels, on top of everything else, I somehow got my hopes up that they would say to Mom, "Hey, you're probably exhausted after everything you've endured this summer - let's take a break and monitor." Looking back, that was not my smartest assumption, because the treatment is clearly working, so of course, they wouldn't just stop when it could possibly reduce her numbers and tumors even more. So, we met with her new oncologist, Dr. Pabatthi, and her recommendation was to stay the current course, and to do another CT in November. So, we told her that we were hoping there'd be a break sooner than that. She did say that if Mom decided she just needed to skip a treatment or 2 to regain her strength and a better mentality (if it got to that point because for now, she is actually feeling pretty good, considering), they said that they would gladly pause the treatment. But, it didn't sound like they would be recommending her to stop treatment, unless symptoms got worse, or unless there was evidence that the cancer began progressing again (probably indicative through labs).
My one disappointment this trip was in meeting her new oncologist. She was friendly and everything you'd want in an oncologist in that regard, but it seemed like she was literally reading mom's chart for the first time in front of us. We had to correct her several times on details, and it didn't do a lot for my confidence level. There was one thing she said when mom and I looked at each other in a panic because it went against everything that we heard in the previous appointment. It's early, but that really did put a damper on my first impression. Clearly there are worse things, so I'm just trying to be grateful for the good things that came from the trip.
She is still getting around pretty well on her hip, and I even noticed when I got to her house last week, that she was moving around considerably better. So really, it's progress all around. 😌
Here's hoping we have more boring trips to ATL in our future, that bring only good news. We do have a fun trip to New Orleans planned for the end of September with some cousins, so we have something to look forward to... and something for mom to work towards so that she is able to walk around and enjoy the bayou with ease. 🐊
Thursday, August 15, 2019
2nd Treatment - 2nd Cycle Complete
I'm late with an update, but that can be seen as good news -- not much to report and things have been relatively "normal." Well, as normal as can be under these circumstances. Her tumor markers have continued to come down as of last week, as evidenced by her lab work (more good news!). We will get the routine CT scan next week, since she'll have completed 2 whole cycles, to see what progress has been made in size and number of tumors. As long as the tumors seem to be responding (in a positive way), she will continue to get both the immunotherapy and chemotherapy. We were told they will likely only stop if she stops responding or her health gets worse.
She has slowly started to adapt to the side effects and it's very uniform in the way that it affects her. She gets her treatment on Wednesday, and usually by Saturday night, she's feeling her worst. By Sunday night into Monday, she can tell she's over the hump and starting to feel better. The only real obstacle at that point is getting her hip to cooperate. She still has good days and bad days with regard to progress there. She's noticed that once she can get up and get moving, she moves pretty well! She still is on the slow side, because her breathing can give her problems, but we are slowly seeing improvements there as well -- thanks to the excellent care she's getting from her pulmonary doctor at CTCA. She only uses a cane when we go to ATL, and she doesn't really use it much. She likes to carry it though because she says it lets people know that she's got something going on, and she isn't just dilly-dallying through the airport and other places (for you non-southerners that read this and may not be familiar with the term, dilly-dallying means fiddle-farting, mosying, lolly-gagging, etc)😜. I told mom she should just get a little orange flag to dangle behind her to let people know to "CAUTION." 😂 #beepbeepbeep
So, the best case scenario from this point is that the tumors can't be seen anymore in the CT and we can take a break from the chemo (and they would continue the immunotherapy alone -- which means she ideally wouldn't feel as bad, and she may even get her hair back!). To be clear -- we aren't expecting this outcome at this point, but miracles do happen from time to time. A step down from that would be that the tumors are getting smaller and they think they can still do better by getting them even smaller with more chemo and immunotherapy, and we continue on as we have been. I'm not sure if there's a point when they would suggest she not do anything at all, but there's always that hope (assuming that doesn't implicate that things are going south, of course).
Another thing that's changed is that she gets a new oncologist next week. Her previous doctor (Dr. Alvarez, aka - Dr. Ricky 😂) took another job back in Houston to continue his ongoing research in the metastatic breast cancer field. We will miss him so much as he has been a constant in our lives for the last 2 years in some capacity, but the work he is doing will help so many people like Mom. We definitely encourage him to press on in that line of work!
But that's it for the most part. She's still chugging along like she always has and she's just as fiesty as ever! 😉The little things that family and friends have done to help, have meant a lot to all of us, and especially her. Everything from the odd jobs around the house, the meals and food that have been brought by, the visits, and the cards and messages of support have been lovely. Thank y'all so much! 💗
She has slowly started to adapt to the side effects and it's very uniform in the way that it affects her. She gets her treatment on Wednesday, and usually by Saturday night, she's feeling her worst. By Sunday night into Monday, she can tell she's over the hump and starting to feel better. The only real obstacle at that point is getting her hip to cooperate. She still has good days and bad days with regard to progress there. She's noticed that once she can get up and get moving, she moves pretty well! She still is on the slow side, because her breathing can give her problems, but we are slowly seeing improvements there as well -- thanks to the excellent care she's getting from her pulmonary doctor at CTCA. She only uses a cane when we go to ATL, and she doesn't really use it much. She likes to carry it though because she says it lets people know that she's got something going on, and she isn't just dilly-dallying through the airport and other places (for you non-southerners that read this and may not be familiar with the term, dilly-dallying means fiddle-farting, mosying, lolly-gagging, etc)😜. I told mom she should just get a little orange flag to dangle behind her to let people know to "CAUTION." 😂 #beepbeepbeep
So, the best case scenario from this point is that the tumors can't be seen anymore in the CT and we can take a break from the chemo (and they would continue the immunotherapy alone -- which means she ideally wouldn't feel as bad, and she may even get her hair back!). To be clear -- we aren't expecting this outcome at this point, but miracles do happen from time to time. A step down from that would be that the tumors are getting smaller and they think they can still do better by getting them even smaller with more chemo and immunotherapy, and we continue on as we have been. I'm not sure if there's a point when they would suggest she not do anything at all, but there's always that hope (assuming that doesn't implicate that things are going south, of course).
Another thing that's changed is that she gets a new oncologist next week. Her previous doctor (Dr. Alvarez, aka - Dr. Ricky 😂) took another job back in Houston to continue his ongoing research in the metastatic breast cancer field. We will miss him so much as he has been a constant in our lives for the last 2 years in some capacity, but the work he is doing will help so many people like Mom. We definitely encourage him to press on in that line of work!
But that's it for the most part. She's still chugging along like she always has and she's just as fiesty as ever! 😉The little things that family and friends have done to help, have meant a lot to all of us, and especially her. Everything from the odd jobs around the house, the meals and food that have been brought by, the visits, and the cards and messages of support have been lovely. Thank y'all so much! 💗
Saturday, July 27, 2019
3rd Treatment - Starting 2nd Cycle!
Like the superhero that mom is, she finished up her in-patient rehab therapy for her hip in record time! So I had to scoot on back to Atlanta on Monday afternoon, but I wasn't able to get there in time to help the staff actually move her to the one of the CTCA hotels unfortunately. So, by the time I got to her, she was completely worn out. I also think being down there last week, without anyone she knew took a toll on her as well (as it would anyone)! Before I left, she insisted she didn't need anyone down there while she was working so hard on getting to walk again, but sometimes, there's something to be said for just having someone there, if nothing else, to advocate for you.
Anyway, she made it through regardless, but lesson learned. So on Tuesday we headed to see her oncologist -- good ol' Dr. Ricky. His name is actually Ricardo Alvarez, but mom and I get a kick out of calling him "Dr. Ricky" (not to his face, although we have resigned ourselves to the fact that we will probably slip up and call him that one day). Back to the story - mom was still reeling from the previous week, tired and just overall not feeling well. Something else to note is that mom has been having significant breathing issues. When we saw Dr. Ricky on Tuesday, he noted her weakness, and the fact that she had lost 10 lbs since all of this started 2 weeks ago. So he decided postpone chemo for that day, and to run a CT that night to make sure nothing significant was going on that x-rays weren't picking up. She was too weak for a chemo treatment since it will take you down a notch, which isn't good when you are already down in the pits. But, the CT of her lungs showed well surprisingly, but it did reveal an effusion around her heart.
He called us after 9pm that night to tell us those results, but didn't seem overly concerned. But hindsight, I think he just didn't want to worry us so we could rest well before the next day began. As soon as we made it to the CTCA the next morning, we get a phone call that she is to report to the cardiology department ASAP, and to push all other appointments to the side. So we rushed to cardiology and they did an echocardiogram immediately with a cardiologist and determined that while there is fluid, it doesn't seem to impacting her heart function. Something to keep an eye on, but it doesn't appear to be the culprit for her breathing issues. A relief but we were frustrated that we still couldn't get to the bottom of the breathing issue. They have scanned her I-don't-know-how-many times to make sure nothing crazy is going on, and there isn't any major issue that they can find (and I am so thankful for their diligence in this). What they THINK is happening, per her pulmonary doctor at CTCA, is that there is inflammation in the lungs occurring, due to her immunotherapy, which we knew was a risk. It was a very low risk, but leave it to mom to defy the odds! 😉
So, there were a couple options, and they decided (pulmonary and oncology together) to continue with treatment, but with a low-dose steroid to combat the inflammation, while also not offsetting the immunotherapy... which is targeting her cancer directly, via the PD-L1 biomarker. The GOOD news in all of this is that looking at her tumor marker from her labs, as well as the the impromptu CT that she wasn't supposed to get until after 2 more treatments, is that she seems to responding well to treatment! If she could just continue to get stronger with her walking and get her breathing under control, we are hoping it means she will get a treatment break once she is done with this next month's cycle (consists of 2 treatments, with 1 of those completed on Wednesday).
Wednesday and Thursday were significantly better with regard to her demeanor and just overall feeling better, and she was finally eating. So she got her chemo treatment on Wednesday, we had a follow-up visit with ortho, and she got her stitches out of her hip, and we went straight to the airport to GET HER HOME! Y'all I was worried on Monday. I mean, truly scared, because mom just seemed so worn out and defeated. I had no idea how I was going to get her around to these appointments, much less back to Wilmington with her feeling so bad. I am so grateful that she bounced back the way she did. Like I said - superhero! 💪💪💪 #stronglikemama
Anyway, she made it through regardless, but lesson learned. So on Tuesday we headed to see her oncologist -- good ol' Dr. Ricky. His name is actually Ricardo Alvarez, but mom and I get a kick out of calling him "Dr. Ricky" (not to his face, although we have resigned ourselves to the fact that we will probably slip up and call him that one day). Back to the story - mom was still reeling from the previous week, tired and just overall not feeling well. Something else to note is that mom has been having significant breathing issues. When we saw Dr. Ricky on Tuesday, he noted her weakness, and the fact that she had lost 10 lbs since all of this started 2 weeks ago. So he decided postpone chemo for that day, and to run a CT that night to make sure nothing significant was going on that x-rays weren't picking up. She was too weak for a chemo treatment since it will take you down a notch, which isn't good when you are already down in the pits. But, the CT of her lungs showed well surprisingly, but it did reveal an effusion around her heart.
He called us after 9pm that night to tell us those results, but didn't seem overly concerned. But hindsight, I think he just didn't want to worry us so we could rest well before the next day began. As soon as we made it to the CTCA the next morning, we get a phone call that she is to report to the cardiology department ASAP, and to push all other appointments to the side. So we rushed to cardiology and they did an echocardiogram immediately with a cardiologist and determined that while there is fluid, it doesn't seem to impacting her heart function. Something to keep an eye on, but it doesn't appear to be the culprit for her breathing issues. A relief but we were frustrated that we still couldn't get to the bottom of the breathing issue. They have scanned her I-don't-know-how-many times to make sure nothing crazy is going on, and there isn't any major issue that they can find (and I am so thankful for their diligence in this). What they THINK is happening, per her pulmonary doctor at CTCA, is that there is inflammation in the lungs occurring, due to her immunotherapy, which we knew was a risk. It was a very low risk, but leave it to mom to defy the odds! 😉
So, there were a couple options, and they decided (pulmonary and oncology together) to continue with treatment, but with a low-dose steroid to combat the inflammation, while also not offsetting the immunotherapy... which is targeting her cancer directly, via the PD-L1 biomarker. The GOOD news in all of this is that looking at her tumor marker from her labs, as well as the the impromptu CT that she wasn't supposed to get until after 2 more treatments, is that she seems to responding well to treatment! If she could just continue to get stronger with her walking and get her breathing under control, we are hoping it means she will get a treatment break once she is done with this next month's cycle (consists of 2 treatments, with 1 of those completed on Wednesday).
Wednesday and Thursday were significantly better with regard to her demeanor and just overall feeling better, and she was finally eating. So she got her chemo treatment on Wednesday, we had a follow-up visit with ortho, and she got her stitches out of her hip, and we went straight to the airport to GET HER HOME! Y'all I was worried on Monday. I mean, truly scared, because mom just seemed so worn out and defeated. I had no idea how I was going to get her around to these appointments, much less back to Wilmington with her feeling so bad. I am so grateful that she bounced back the way she did. Like I said - superhero! 💪💪💪 #stronglikemama
Wednesday, July 17, 2019
Where to Start?
So much has happened since I last updated, it's hard to know where to start. If you'll remember in my last update, I mentioned that mom was having a terrible time walking. She couldn't put any weight on her right leg to get around, and was using a walker all of the time, and a wheelchair when we were going through airports and in ATL. Her primary care physician (PCP) in Wilmington had diagnosed her with bursitis several weeks ago, and given her a shot in her hip, and some anti-inflammatory medication to help with the pain, but NOTHING was giving her relief. They also tried to give her a steroid but that would negate the immunotherapy treatment that she's undergoing, so we refused that medication.
When we last saw the oncologist a couple weeks ago, I begged him to look further, because the PCP's diagnosis of bursitis just didn't make sense anymore. He agreed, but they couldn't fit her in for an MRI until we returned for her next treatment. I tried to get her into a local clinic in Wilmington, but couldn't get it worked out since you can't just walk in somewhere and ask for an MRI and the hoops to jump through were never-ending and by the time, I could've got it worked out - it was time to go to ATL. Long story, but she decided to wait until we went back to ATL last week and an MRI revealed that her hip was actually FRACTURED -- completely in half from what they said the x-ray revealed. It was at the neck of the femur where it meets the socket. It was no wonder, at that point, why she was experiencing so much pain without any relief whatsoever.
So, chemo/immunotherapy was postponed and she was admitted to the hospital that night (Tuesday night), and we waited for 3 days for them to finally get surgery lined up on Friday afternoon. They completely replaced her right hip. She was extremely foggy coming out of that surgery/the anesthesia and we had to recap for her what was going on -- it scared the daylights out of me when she saw us and just started crying! She was so confused, but we got her straightened out. Jeremy was able to come down for a couple days and be with us while we waited for surgery, and it was nice to have someone to eat with and talk to, since mom was resting pretty well with the pain meds they were giving her during those days (hence the humorous Facebook post that prompted a lot of discussion about an unbelievable pimple popping trend that apparently warrants a TV show -- GROSS🙅🙅). Nonetheless, I know she was exhausted after not having any pain relief over the last month.
I finally came home on Sunday, and her cousin Chris decided to drop in and take my place, to help keep her company while she waited for discharge. I would've stayed longer but Millie started Kindergarten on Monday, and I was quite teary at the thoughts of missing it. I would like to think that all of this going on was a big contributing factor to my being a ball of tears as I walked out of Millie's classroom on Monday... and at drop off the next day, and the next day, but I know for a fact that I was going to be a mess regardless. No sense in blaming it on mom. 😉
Mom was finally discharged yesterday, and sent to a rehab facility close to the Cancer Treatment Center. She will have 3 hrs of rehab a day, and just stay there at the facility to make sure that she is getting all of the help she needs. Especially since I can't be there this week, with Craig traveling for work. I think they have her scheduled to be in the rehab facility for almost 2 weeks, but we're hoping she'll heal quickly and be released sooner so she can continue to get her chemo/immunotherapy treatment. We don't know how this break in treatment will affect things, but we can't control it so there's no need in worrying, I suppose. (But honestly, who are we kidding... I worry over everything. #ownit)
Mom is also trying to get her strength and energy back, since she hasn't been able to do anything since the pain started on her birthday June 14, of all days. So she's building up her breathing/lung strength again (she gets very winded when she does any sort of activity). We are hoping for a full recovery on all fronts, so that we can get treatment, and life in general, back on track. Thank you to everyone who caught wind of what's going on and checked in on us and my sanity as we navigated a VERY long week. She's doing well so far in this recovery stage and I hope to get back down there soon to get her to chemo, and back home again.
We need to get the show on the road because she has a busy agenda that includes grandbabies to play with, who are very eager to see their AnnaAnna (or NanaAnna, to the older grandbabies). My kids are very jealous when they hear I'm with Anna, and constantly ask when they get to come with me. Every.Time. When I FaceTimed with them while I was gone last week, they'd say "MOMMY!! HEY! .... WHERE'S ANNA?!" Well, dang. 😭 But all kidding aside, although that really is exactly what happens and I'm not exaggerating at all, we will be making arrangements very soon to make that reunion happen! Every time I go to her house without the kids, it's so sad to just see their toys put away, and their beds empty. I feel like I'm betraying them by being with the great ANNA without them. Oh well - she was MY Anna first! 😂 #stilllearningtoshare
**Also, if you plan to leave a comment on THIS blog, please make sure you sign your name with the comments because we can't tell who it's from if you don't! I'd love to relay your well wishes to her and it definitely lifts her spirits! 💞
When we last saw the oncologist a couple weeks ago, I begged him to look further, because the PCP's diagnosis of bursitis just didn't make sense anymore. He agreed, but they couldn't fit her in for an MRI until we returned for her next treatment. I tried to get her into a local clinic in Wilmington, but couldn't get it worked out since you can't just walk in somewhere and ask for an MRI and the hoops to jump through were never-ending and by the time, I could've got it worked out - it was time to go to ATL. Long story, but she decided to wait until we went back to ATL last week and an MRI revealed that her hip was actually FRACTURED -- completely in half from what they said the x-ray revealed. It was at the neck of the femur where it meets the socket. It was no wonder, at that point, why she was experiencing so much pain without any relief whatsoever.
So, chemo/immunotherapy was postponed and she was admitted to the hospital that night (Tuesday night), and we waited for 3 days for them to finally get surgery lined up on Friday afternoon. They completely replaced her right hip. She was extremely foggy coming out of that surgery/the anesthesia and we had to recap for her what was going on -- it scared the daylights out of me when she saw us and just started crying! She was so confused, but we got her straightened out. Jeremy was able to come down for a couple days and be with us while we waited for surgery, and it was nice to have someone to eat with and talk to, since mom was resting pretty well with the pain meds they were giving her during those days (hence the humorous Facebook post that prompted a lot of discussion about an unbelievable pimple popping trend that apparently warrants a TV show -- GROSS🙅🙅). Nonetheless, I know she was exhausted after not having any pain relief over the last month.
I finally came home on Sunday, and her cousin Chris decided to drop in and take my place, to help keep her company while she waited for discharge. I would've stayed longer but Millie started Kindergarten on Monday, and I was quite teary at the thoughts of missing it. I would like to think that all of this going on was a big contributing factor to my being a ball of tears as I walked out of Millie's classroom on Monday... and at drop off the next day, and the next day, but I know for a fact that I was going to be a mess regardless. No sense in blaming it on mom. 😉
Mom was finally discharged yesterday, and sent to a rehab facility close to the Cancer Treatment Center. She will have 3 hrs of rehab a day, and just stay there at the facility to make sure that she is getting all of the help she needs. Especially since I can't be there this week, with Craig traveling for work. I think they have her scheduled to be in the rehab facility for almost 2 weeks, but we're hoping she'll heal quickly and be released sooner so she can continue to get her chemo/immunotherapy treatment. We don't know how this break in treatment will affect things, but we can't control it so there's no need in worrying, I suppose. (But honestly, who are we kidding... I worry over everything. #ownit)
Mom is also trying to get her strength and energy back, since she hasn't been able to do anything since the pain started on her birthday June 14, of all days. So she's building up her breathing/lung strength again (she gets very winded when she does any sort of activity). We are hoping for a full recovery on all fronts, so that we can get treatment, and life in general, back on track. Thank you to everyone who caught wind of what's going on and checked in on us and my sanity as we navigated a VERY long week. She's doing well so far in this recovery stage and I hope to get back down there soon to get her to chemo, and back home again.
We need to get the show on the road because she has a busy agenda that includes grandbabies to play with, who are very eager to see their AnnaAnna (or NanaAnna, to the older grandbabies). My kids are very jealous when they hear I'm with Anna, and constantly ask when they get to come with me. Every.Time. When I FaceTimed with them while I was gone last week, they'd say "MOMMY!! HEY! .... WHERE'S ANNA?!" Well, dang. 😭 But all kidding aside, although that really is exactly what happens and I'm not exaggerating at all, we will be making arrangements very soon to make that reunion happen! Every time I go to her house without the kids, it's so sad to just see their toys put away, and their beds empty. I feel like I'm betraying them by being with the great ANNA without them. Oh well - she was MY Anna first! 😂 #stilllearningtoshare
**Also, if you plan to leave a comment on THIS blog, please make sure you sign your name with the comments because we can't tell who it's from if you don't! I'd love to relay your well wishes to her and it definitely lifts her spirits! 💞
Thursday, June 27, 2019
2nd Treatment -- 1st Cycle
Medically speaking, this trip was uneventful (which is a good thing). She had her normal check-in with her oncologist, and then chemo/immunotherapy, and we also tried to get her scheduled for an MRI while we were in ATL, but they couldn’t squeeze her in. The MRI is for an issue that she’s having with her hip, since her last treatment. She’s had bursitis in the couple of months preceding her being diagnosed, so when she went to be checked at her PCP, they chalked it up to bursitis again. The problem with that is that none of the treatment seems to be giving her much relief at all(cortisone shot plus meloxicam), and she’s having a lot of trouble walking or getting around at all. She uses a walker almost all of the time at home now, and has been managing with just a cane and wheelchair on this trip. It has been eventful in that respect just because this is the first time mom hasn’t been totally mobile on her own.
Navigating the airport and riding around in the shuttles were more difficult than our previous trips, just because there’s a lot of her getting up and down, and different paths we have to take due to accessibility — we’ve felt a little out of sorts just because it’s not our normal routine, and we realize now that we need to allow more time to get places.
Other than that, mom has been feeling pretty good and in good spirits. Everyone has been so nice about checking in on her and helping when possible, especially since I’m 2 hours away — y’all don’t know how much it helps and relieves stress for her and I both! The first few days after the last treatment brought on a lot of body aches and overall unpleasantness, but she seemed to get over that fairly quickly (roughly 4-5 days). The biggest ordeal was and is her mobility after that. Her oncologist prescribed some Tramadol, in hopes that it gives her some relief until we can figure out what’s going on.
Despite all of that, we managed to make the best of it and we buzzed around the treatment center laughing, as I would make car noises while pushing her in the wheelchair (to her amusement). Mom would also critique my wheelchair driving abilities (still a mom through and through), and she’d constantly comment about how fast we were going, and that she needed goggles and a scarf to fly behind her (all I could picture was snoopy). 😂 We laughed uncontrollably over that for a solid 5 minutes — I could not get the image out of my head! There were a couple times I’d forget that she wasn’t just sitting in a chair beside me, and when we I would get up to make our next move, I’d walk off… and then remember that I have to push her, and quickly would run back and fetch her. #oops 🙎
There are also a couple times when she’d tell me to stop at the trashcan so she could throw something away, and I’d forget, and run right past it, and she’d say “YEEEEEAAAAAAWN.” 🚗💨 This never got old (unfortunately) and I’m sure that the people who don’t understand our humor (basically everyone) think we’re crazy and probably quietly say, “Bless their hearts..” under their breath. The demeanor in the cancer treatment center is pretty quiet and solemn as you can imagine, so we are a bit… um, different. Oh well — sorry, not sorry. Here’s hoping her hip pain eases up and she has minimal side effects this time around. 🍻
Thursday, June 13, 2019
Chemo & Immunotherapy -- 1st Treatment, 1st Cycle
We had a busy week in Atlanta. Mom had some breathing tests completed that showed a wide variety of things with regard to her lung capacity and function. I wish she would've let me get a video of these tests because they were truly something to behold! It was quite a workout for mom (I swear, I think she had to put her eyeballs back in a few times) and she was sore afterwards. The tests make you use your lungs in ways that you wouldn't normally. She did great and the test results produced nothing surprising, according to the pulmonologist. We will take that as good news!
She also got an echocardiogram that was standard for starting chemo. They said it provides a sort of baseline to reference, if problems arise later as she goes through treatment. The test results for her heart were good!
Her labs were great, with exception to her potassium, which they just gave her a few tablets to get those levels up a bit. Also, her labs returned an elevated level with regard to tumor markers, but that wasn't surprising since we know she has cancer already. But those levels will tell us as we go, if the treatment is helping or not. Obviously, we are hoping those levels go down in the future. Beyond that, we won't know much about how the treatments are going until we see the CT scan results in 2 months, after 2 cycles. We do hope that her breathing gets easier, as the chemo and immunotherapy help to shrink whatever is present in her lungs.
We knew what to expect with the chemo process, so no big surprises there. They gave her all her pre-meds, and she was already pretty tired from the anesthesia from her port surgery earlier. So it came as no surprise that she was ready for a nap when the benadryl hit her system. Both the immunotherapy and chemotherapy took only 2-3 hours with everything. And then we were done!
We came back to the hotel and it took me almost 2 hours to get take out from a local restaurant while she rested in the room. That was a fiasco and a long story that basically equates to the CTCA needing to get their transportation department in order. It is a BIG frustration recently when we go. Things are already stressful enough, so it is really disappointing when even getting food is complicated.
Aside from that, it was a quiet night, but mom didn't sleep well. She was really sore from her port surgery and I think she had a hard time getting comfortable. Not to mention, the chemo pumping through her veins probably didn't help.
Today, she woke up and felt pretty good aside from being tired, and then as the day went on, she started feeling worse. I also noticed that she's getting more winded as she walks. One of the side effects of the immunotherapy is shortness of breath, so to pair that with her already having shortness of breath, isn't totally surprising. She went to bed fairly early and said she feels generally yucky. I'm hoping tomorrow she feels better, because tomorrow is her birthday! 💝
We go back in 2 weeks, instead of weekly like we first thought. Her doctor said he can double the chemo dose every 2 weeks with her immunotherapy, instead of spacing it out and having her come every week. No reason to believe that doing so will be less effective, so we are going with it!
She also got an echocardiogram that was standard for starting chemo. They said it provides a sort of baseline to reference, if problems arise later as she goes through treatment. The test results for her heart were good!
Her labs were great, with exception to her potassium, which they just gave her a few tablets to get those levels up a bit. Also, her labs returned an elevated level with regard to tumor markers, but that wasn't surprising since we know she has cancer already. But those levels will tell us as we go, if the treatment is helping or not. Obviously, we are hoping those levels go down in the future. Beyond that, we won't know much about how the treatments are going until we see the CT scan results in 2 months, after 2 cycles. We do hope that her breathing gets easier, as the chemo and immunotherapy help to shrink whatever is present in her lungs.
We knew what to expect with the chemo process, so no big surprises there. They gave her all her pre-meds, and she was already pretty tired from the anesthesia from her port surgery earlier. So it came as no surprise that she was ready for a nap when the benadryl hit her system. Both the immunotherapy and chemotherapy took only 2-3 hours with everything. And then we were done!
We came back to the hotel and it took me almost 2 hours to get take out from a local restaurant while she rested in the room. That was a fiasco and a long story that basically equates to the CTCA needing to get their transportation department in order. It is a BIG frustration recently when we go. Things are already stressful enough, so it is really disappointing when even getting food is complicated.
Aside from that, it was a quiet night, but mom didn't sleep well. She was really sore from her port surgery and I think she had a hard time getting comfortable. Not to mention, the chemo pumping through her veins probably didn't help.
Today, she woke up and felt pretty good aside from being tired, and then as the day went on, she started feeling worse. I also noticed that she's getting more winded as she walks. One of the side effects of the immunotherapy is shortness of breath, so to pair that with her already having shortness of breath, isn't totally surprising. She went to bed fairly early and said she feels generally yucky. I'm hoping tomorrow she feels better, because tomorrow is her birthday! 💝
We go back in 2 weeks, instead of weekly like we first thought. Her doctor said he can double the chemo dose every 2 weeks with her immunotherapy, instead of spacing it out and having her come every week. No reason to believe that doing so will be less effective, so we are going with it!
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Mom -- fresh out of surgery. She was happy about her pink wheelchair! 💟
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Thursday, May 30, 2019
Mom's Health Update
It's been a little over a month since my brother and I confided in each other that we both had a really awful feeling something was going on with Mom. I was on a boat off the coast of Italy and suddenly had a sinking feeling in my stomach that things were wrong. So in the middle of the Mediterranean, I frantically began texting mom, Jeremy and her cousin Debbie to see if she had returned from a doctor's appointment yet, and if anything new had come up. Long story, short - a procedure to remove fluid from her lungs back in April (the day before we left for Spain/Italy) left us all (doctors included) perplexed on what caused the fluid to be there in the first place. Original thoughts of pneumonia or some sort of respiratory infection were ruled out, so we feared the worst, and apparently those fears were justified.
Yesterday, mom was officially diagnosed again with triple negative breast cancer (this time, metastatic) that has spread to her lungs, lymph nodes, and bones. It has been a month or more getting to this diagnosis, and we've had a lot of time to process each new revelation as we got closer to the official diagnosis that we received yesterday from her oncologist in ATL. As you can imagine, a lot of tears have been cried but we are at a point now where we are ready to tackle this cancer again (for those that don't know, she was originally diagnosed and treated in 2017 for a lump in her breast, treatment was completed April 2018). Her oncologist was surprised her cancer had returned so quickly, as her type of cancer typically returns (if it does) around the 2-3 year mark. She last had a mammogram in September, and a physical exam in March, which of course came back clear, and still is as far as we can tell. It's really a shame that scans, other than mammograms, aren't approved by insurance for cancer patients. I can't help but wonder if this could have been caught sooner. But honestly, her insurance recently denied coverage for that mammogram, saying it was unnecessary. Talk about infuriating..
Anyway, if you know anything about metastatic breast cancer, you probably know that it is advanced and not curable, only treatable to extend quality of life. You are also likely wondering about life expectancy and survival rates. Honestly, those statistics are not good (generally speaking). However, everyone is different and we just don't know anything specific regarding that. In my eyes, there is no sense in dwelling on an estimated time frame that we may or may not have. For now, mom is feeling good, but just has a hard time moving around, since she has shortness of breath very easily. We found out this morning from the pulmonologist here in ATL that only treatment will help to ease that breathing problem. BUT we did find out that there seems to be only a minimal amount of fluid in her lungs since the fluid extraction (1.5 liters!) on April 23rd. This is good news for now, since that means another extraction is not needed at this time, and the fluid buildup is very slow going.
Treatment for stage 4 triple negative breast cancer is a little complicated at the moment. We had hoped that our trip down to ATL this week would have resulted in immediate treatment. However, her oncologist is working hard to find out if she has a certain biomarker, called PD-L1, that would make her eligible to receive a new treatment for triple negative breast cancer, called Immunotherapy (it was just approved by the FDA in MARCH!) It would actually be combined with chemotherapy... 3 weeks on, 1 week off and then repeat another cycle. They will then take a CT to see how everything has responded after the 2nd cycle, and repeat as necessary. If the cancer responds well enough, mom could take a break from treatment and would be scanned again in 3 months to see where things stand, unless symptoms ramp up. If the cancer looks to have progressed, then the cycles start again to try to control and maintain, and hopefully shrink what is there. This will likely be an indefinite process.
On the flip side, if the testing comes back negative for PD-L1 and she is not able to get the Immunotherapy, she will just have chemo. I'm not sure if she would follow the same or a similar schedule with just the chemo alone, or if it would be different. We are just hoping she gets the Immunotherapy and we'll cross that bridge when we get to it, if she can't. Unfortunately, that comes with more waiting and we have learned a lot about patience these last 3 weeks. When I typed that it's been 3 weeks, I said to myself, "Has it really only been 3 weeks?!" It feels like it was an eternity ago since I went with her to the doctor that Tuesday, right after we returned from Italy. Her Wilmington Pulmonologist was about 90% sure she had cancer again, at least in her lungs and lymph node between her lungs. When Iasked begged the doctor to tell me something else it could possibly be, he had nothing. Devastation does not properly convey that feeling, but we still had to get through the biopsy to know for certain because we knew 90% did not mean 100%..
Unfortunately, cancer was preliminarily confirmed that Friday right after an endobronchial ultrasound and biopsy, but we still weren't sure if it was the breast cancer that had spread or if it was new lung cancer that had also spread. That was what was confirmed yesterday - in her lungs and lymph node and a PET scan prior to the biopsy also highlighted another lymph node, and a couple bones. Those areas were not biopsied.
So, here we are. Scared about the uncertainty and it's implications, but more than ready to get this process rolling so we can continue going to Vegas and wherever else she wants to go, as treatments allow. If you know my mom, not much slows her down when it comes to her travels. During her initial treatment cycle and after one of her chemo appointments, she went to Vegas to visit family (and to go to the casinos, let's be real) and she was a trooper! She has plenty of scarves to keep her looking fly (she loves that term, for some reason💁), and she feels confident in that she halfway knows what to expect with regard to chemo. She is tentatively set up to go back to ATL around June 11/12th to either start treatment or map out next steps, and closely monitor her COPD (so that there isn't confusion between cancer symptoms and COPD symptoms).
Mom is in pretty good spirits, considering what's going on. She's still the same Anne Marie though, so don't get all mushy and say nice things because that makes us cry. Making us laugh to the point of crying is preferred and also appreciated. 😊
Yesterday, mom was officially diagnosed again with triple negative breast cancer (this time, metastatic) that has spread to her lungs, lymph nodes, and bones. It has been a month or more getting to this diagnosis, and we've had a lot of time to process each new revelation as we got closer to the official diagnosis that we received yesterday from her oncologist in ATL. As you can imagine, a lot of tears have been cried but we are at a point now where we are ready to tackle this cancer again (for those that don't know, she was originally diagnosed and treated in 2017 for a lump in her breast, treatment was completed April 2018). Her oncologist was surprised her cancer had returned so quickly, as her type of cancer typically returns (if it does) around the 2-3 year mark. She last had a mammogram in September, and a physical exam in March, which of course came back clear, and still is as far as we can tell. It's really a shame that scans, other than mammograms, aren't approved by insurance for cancer patients. I can't help but wonder if this could have been caught sooner. But honestly, her insurance recently denied coverage for that mammogram, saying it was unnecessary. Talk about infuriating..
Anyway, if you know anything about metastatic breast cancer, you probably know that it is advanced and not curable, only treatable to extend quality of life. You are also likely wondering about life expectancy and survival rates. Honestly, those statistics are not good (generally speaking). However, everyone is different and we just don't know anything specific regarding that. In my eyes, there is no sense in dwelling on an estimated time frame that we may or may not have. For now, mom is feeling good, but just has a hard time moving around, since she has shortness of breath very easily. We found out this morning from the pulmonologist here in ATL that only treatment will help to ease that breathing problem. BUT we did find out that there seems to be only a minimal amount of fluid in her lungs since the fluid extraction (1.5 liters!) on April 23rd. This is good news for now, since that means another extraction is not needed at this time, and the fluid buildup is very slow going.
Treatment for stage 4 triple negative breast cancer is a little complicated at the moment. We had hoped that our trip down to ATL this week would have resulted in immediate treatment. However, her oncologist is working hard to find out if she has a certain biomarker, called PD-L1, that would make her eligible to receive a new treatment for triple negative breast cancer, called Immunotherapy (it was just approved by the FDA in MARCH!) It would actually be combined with chemotherapy... 3 weeks on, 1 week off and then repeat another cycle. They will then take a CT to see how everything has responded after the 2nd cycle, and repeat as necessary. If the cancer responds well enough, mom could take a break from treatment and would be scanned again in 3 months to see where things stand, unless symptoms ramp up. If the cancer looks to have progressed, then the cycles start again to try to control and maintain, and hopefully shrink what is there. This will likely be an indefinite process.
On the flip side, if the testing comes back negative for PD-L1 and she is not able to get the Immunotherapy, she will just have chemo. I'm not sure if she would follow the same or a similar schedule with just the chemo alone, or if it would be different. We are just hoping she gets the Immunotherapy and we'll cross that bridge when we get to it, if she can't. Unfortunately, that comes with more waiting and we have learned a lot about patience these last 3 weeks. When I typed that it's been 3 weeks, I said to myself, "Has it really only been 3 weeks?!" It feels like it was an eternity ago since I went with her to the doctor that Tuesday, right after we returned from Italy. Her Wilmington Pulmonologist was about 90% sure she had cancer again, at least in her lungs and lymph node between her lungs. When I
Unfortunately, cancer was preliminarily confirmed that Friday right after an endobronchial ultrasound and biopsy, but we still weren't sure if it was the breast cancer that had spread or if it was new lung cancer that had also spread. That was what was confirmed yesterday - in her lungs and lymph node and a PET scan prior to the biopsy also highlighted another lymph node, and a couple bones. Those areas were not biopsied.
So, here we are. Scared about the uncertainty and it's implications, but more than ready to get this process rolling so we can continue going to Vegas and wherever else she wants to go, as treatments allow. If you know my mom, not much slows her down when it comes to her travels. During her initial treatment cycle and after one of her chemo appointments, she went to Vegas to visit family (and to go to the casinos, let's be real) and she was a trooper! She has plenty of scarves to keep her looking fly (she loves that term, for some reason💁), and she feels confident in that she halfway knows what to expect with regard to chemo. She is tentatively set up to go back to ATL around June 11/12th to either start treatment or map out next steps, and closely monitor her COPD (so that there isn't confusion between cancer symptoms and COPD symptoms).
Mom is in pretty good spirits, considering what's going on. She's still the same Anne Marie though, so don't get all mushy and say nice things because that makes us cry. Making us laugh to the point of crying is preferred and also appreciated. 😊
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