Colby & Zoe were there too... but apparently I didn't get many photos of them!
Saturday, March 10, 2018
Children's Museum
A few weeks back on February vacation we got out and went to the Children's Museum with Grammy and Grampy.
The Water Room is definitely the favorite!
The Water Room is definitely the favorite!
 |
| Baby Girl's first time in a big girl stroller. |
Hunter loved the dominos. He got bummed when it got knocked down on him, but he got back to it. :)
They loved the "Pirate" Ship. (It's not a pirate ship, but rather a ship that is supposed to resemble one that colonists would have taken when they came to settle in Rhode Island.
Hunter the builder.
I love this crazy crew.
And with me and my trusty gray hat.
The big kiddos and Grampy on the creepy lady.
Wednesday, March 7, 2018
Remission
Remission is a funny thing. It's the goal for cancer, right? You hear you have cancer and you look for the light at the end of the tunnel- that moment when you're free and clear and you're in remission. I know that was what we always looked forward to. The point when the cancer was gone and life could go on.
Only it's not really that easy I'm learning.
On January 11, 2018 I finished cancer treatments. I received my last dose of chemo and I was in remission. (Honestly though, Dr. Nathenson never used that word... I was told I had clear scans but I assume it's the same thing?)
Anyways, I expected things to get better quickly, but really, I'm in a holding pattern. I still feel exhausted and achey and I still have a feeding tube. I'm still waiting for the better. And I hate that I still feel so... sick. I still need help. I'm still not who I was before. (Will I ever be?)
When you're going through cancer treatments you expect to feel awful. Sleeping for days at a time is okay- sleep fights cancer. You're expected to lose weight. You're expected to be in pain. You're allowed that. Chemo is not only killing the cancer cells, but it's poisoning your body. The drugs effect everything. My fingertips and toes were constantly numb. My fingernails became brittle. My back constantly ached. I had awful heartburn. In the course of 10.5 months I took 6 different highly-toxic chemotherapy drugs. (Vincristine, doxorubicin, cyclophosphamide, irinotecan, ifosfamide, and eutopiside) I took drugs to combat the side effects of the chemo. And then I took drugs to combat the side effect of the side effect drugs. On top of all this, I spent 6 weeks receiving daily radiation treatments. I couldn't eat. I couldn't swallow. I had blisters on top of blisters in my mouth. I was on multiple narcotics to ease the pain. I was admitted inpatient 5 times in as many months to treat infections I developed due to my weakened state. This is when I had my "9s" and found myself unable to talk because of the pain. But it was all expected. It was okay that I spent 10 days in the hospital and hardly talked during any of it to avoid the pain. It was okay that I took narcotics every two hours and went through 24 ice packs a day to ease the pain. Because that's what happens when you have cancer. But it was okay because I was doing something to fight the cancer. It all had a purpose and it was killing the cancer cells.
But back to remission. After a year of doing something I find myself doing nothing- except not feeling great. It's hard to sit here each day and not receive chemo or radiation. I hated them, but they were doing something. What if as I sit here typing, those pesky cancer cells are multiplying in my lungs? Or on my liver? Remission is a chance to relax, but I'm not sure you ever can really relax. It's the end goal sure, but there's no guarantee that it's the end. I could go back to Dana in 2 weeks and learn that I have another tumor growing. And then I'd be three months behind because remission caused me to do nothing.
I googled alveolar rhabdomyosarcoma for the first time today. I waited over a year. Finally I decided that the numbers on the screen weren't going to change anything so I googled. I wanted to see how common it is. I already knew that sarcomas in general are rare. Rhabdomyosarcoma? About 250 cases a year. The majority of them children 1-10 years old. There is no real info about adult rhabdomyosarcoma because it is that rare. One in a million kids get it. The number is even smaller for adults. When we met with the OB who took me on when I was diagnosed she told me that I was probably the only pregnant person ever to be diagnosed with alveolar rhabdomyosarcoma. (I never wanted cancer to be my claim to fame!)
The point of all of this? Though remission is the goal, the uncertainty is so much harder than I thought it would be.
Only it's not really that easy I'm learning.
On January 11, 2018 I finished cancer treatments. I received my last dose of chemo and I was in remission. (Honestly though, Dr. Nathenson never used that word... I was told I had clear scans but I assume it's the same thing?)
Anyways, I expected things to get better quickly, but really, I'm in a holding pattern. I still feel exhausted and achey and I still have a feeding tube. I'm still waiting for the better. And I hate that I still feel so... sick. I still need help. I'm still not who I was before. (Will I ever be?)
When you're going through cancer treatments you expect to feel awful. Sleeping for days at a time is okay- sleep fights cancer. You're expected to lose weight. You're expected to be in pain. You're allowed that. Chemo is not only killing the cancer cells, but it's poisoning your body. The drugs effect everything. My fingertips and toes were constantly numb. My fingernails became brittle. My back constantly ached. I had awful heartburn. In the course of 10.5 months I took 6 different highly-toxic chemotherapy drugs. (Vincristine, doxorubicin, cyclophosphamide, irinotecan, ifosfamide, and eutopiside) I took drugs to combat the side effects of the chemo. And then I took drugs to combat the side effect of the side effect drugs. On top of all this, I spent 6 weeks receiving daily radiation treatments. I couldn't eat. I couldn't swallow. I had blisters on top of blisters in my mouth. I was on multiple narcotics to ease the pain. I was admitted inpatient 5 times in as many months to treat infections I developed due to my weakened state. This is when I had my "9s" and found myself unable to talk because of the pain. But it was all expected. It was okay that I spent 10 days in the hospital and hardly talked during any of it to avoid the pain. It was okay that I took narcotics every two hours and went through 24 ice packs a day to ease the pain. Because that's what happens when you have cancer. But it was okay because I was doing something to fight the cancer. It all had a purpose and it was killing the cancer cells.
But back to remission. After a year of doing something I find myself doing nothing- except not feeling great. It's hard to sit here each day and not receive chemo or radiation. I hated them, but they were doing something. What if as I sit here typing, those pesky cancer cells are multiplying in my lungs? Or on my liver? Remission is a chance to relax, but I'm not sure you ever can really relax. It's the end goal sure, but there's no guarantee that it's the end. I could go back to Dana in 2 weeks and learn that I have another tumor growing. And then I'd be three months behind because remission caused me to do nothing.
I googled alveolar rhabdomyosarcoma for the first time today. I waited over a year. Finally I decided that the numbers on the screen weren't going to change anything so I googled. I wanted to see how common it is. I already knew that sarcomas in general are rare. Rhabdomyosarcoma? About 250 cases a year. The majority of them children 1-10 years old. There is no real info about adult rhabdomyosarcoma because it is that rare. One in a million kids get it. The number is even smaller for adults. When we met with the OB who took me on when I was diagnosed she told me that I was probably the only pregnant person ever to be diagnosed with alveolar rhabdomyosarcoma. (I never wanted cancer to be my claim to fame!)
The point of all of this? Though remission is the goal, the uncertainty is so much harder than I thought it would be.
Wednesday, July 26, 2017
The people around me
Right after Connor passed away, one thing I noticed really early on was who was really there for us. It's easy to say you're there, but to actually be there is something different. I'm not going to lie- we were let down by a lot of people, but those that were there made all the difference. Fortunately I'm also a homebody who doesn't need a lot of people around me. I would much rather be at home with a few people I'm truly comfortable with than a whole bunch of people, so it was easy for me to shrug my shoulders, say "meh", and move on from the people who weren't there.
I have noticed this time around that it's exactly the same in some ways. There are people who are here that I knew would be here. There are people who I thought would at least reach out who I have never once heard from. Again... "meh" and move on.
But this time around I have also realized how amazingly lucky I am to be where I am because SO many people have reached out and I have been so deeply touched and overwhelmed and grateful.
My school/work community has truly been the most amazing thing to come out of this. At school I keep to myself, get my work done... I'm me and I'm quiet. I didn't feel like an outsider, but I didn't feel like I'd really weaseled myself in yet. I knew everyone, but besides some "hi"s and "how are you"s we were busy.
But oh my word.
Once I was diagnosed in February my entire school community immediately rallied around me and I have been so amazingly grateful (and awful at sending Thank Yous). A collection was set up to help offset some expenses (gas and parking and such). A card drive was organized and bins were set up and when I picked up H from preschool (which is attached to my school) there would be cards and gifts waiting in the bins. Once huge bins were filled with summery toys- one for each of my kiddos. I received cookies and books and so many wonderful things from people I knew, but I had no idea really knew me. My amazing class set up a dinner delivery for me. We'd come home to amazing meals waiting for us twice a week. We still have delicious dinners waiting in the freezer. Old families from past years delivered their own meals and cards and "thinking of you"s. Coworkers managed to get four full scholarships for my kiddos to attend summer camp while I'm at chemo and radiation-- something I never even considered, but has been such an amazing and wonderful opportunity for my kids. Early on I received a huge email put together by staff members who had "been there" filled with tips and groups and places to contact that help families dealing with cancer.
I just have felt so wrapped in love. And I'm so very grateful (I've used that word a lot!) that I get to work with such an amazing and wonderful group of people.
I have noticed this time around that it's exactly the same in some ways. There are people who are here that I knew would be here. There are people who I thought would at least reach out who I have never once heard from. Again... "meh" and move on.
But this time around I have also realized how amazingly lucky I am to be where I am because SO many people have reached out and I have been so deeply touched and overwhelmed and grateful.
My school/work community has truly been the most amazing thing to come out of this. At school I keep to myself, get my work done... I'm me and I'm quiet. I didn't feel like an outsider, but I didn't feel like I'd really weaseled myself in yet. I knew everyone, but besides some "hi"s and "how are you"s we were busy.
But oh my word.
Once I was diagnosed in February my entire school community immediately rallied around me and I have been so amazingly grateful (and awful at sending Thank Yous). A collection was set up to help offset some expenses (gas and parking and such). A card drive was organized and bins were set up and when I picked up H from preschool (which is attached to my school) there would be cards and gifts waiting in the bins. Once huge bins were filled with summery toys- one for each of my kiddos. I received cookies and books and so many wonderful things from people I knew, but I had no idea really knew me. My amazing class set up a dinner delivery for me. We'd come home to amazing meals waiting for us twice a week. We still have delicious dinners waiting in the freezer. Old families from past years delivered their own meals and cards and "thinking of you"s. Coworkers managed to get four full scholarships for my kiddos to attend summer camp while I'm at chemo and radiation-- something I never even considered, but has been such an amazing and wonderful opportunity for my kids. Early on I received a huge email put together by staff members who had "been there" filled with tips and groups and places to contact that help families dealing with cancer.
I just have felt so wrapped in love. And I'm so very grateful (I've used that word a lot!) that I get to work with such an amazing and wonderful group of people.
Thursday, July 6, 2017
Not what I expected
By and large, having cancer has not been what I expected. In a good way.
When I found out I had cancer, it was scary for sure. The "what if's" and the thought of scarring the kids was at the front of my mind. But I only had time to worry about that for about a millisecond before the ball got rolling. You have to remember that it was a week later that I had surgery to have a port placed and less than 2 weeks after my diagnosis before my chemo started. There wasn't really much time to worry.
However, between the time my BI Oncologist gave me the name of the cancer and the day of my consult with Dr. N. I had time to research the cancer. I know I said I haven't even typed in the name... that's because I originally thought I was told I had a very different version of cancer. One with a 91% cure rate at Dana Farber. One with no chemo on the docket. One that, once I told Dr. N. what I thought I had, he hesitated before gently letting me know that I was wrong. I had a very different sarcoma. One with bigger hurdles and a lot more to it. So that day at Dana Farber I let the worry get to me. I was afraid of getting really sick with the chemo. I was afraid of losing Harper or being forced to terminate all together.
Since then, it's been go go go. I have completed 5 full cycles of chemo and I am feeling really good. I have about a week and a half each cycle where I am exhausted and have an awful sore throat, but those side effects are minor. I did have about 2 days my very first cycle where I was laying in bed, exhausted and pregnant and wondering how on Earth I would ever care for a newborn while being so exhausted, but I've figured out how to deal with it and get moving, so I think I'll be fine.
Overall I feel pretty good each cycle. I can take the kids to school & camp. I can sit and watch them swim in the pool. I can tuck them in and read bedtime stories. I can make lunches and cook dinner. It's not what I expected, that's for sure. Life just goes on. A few weeks ago a friend posted a Huffington Post story that was so perfect and accurate.
So I've completed 5 cycles. I started cycle 6 today. I have 8 full cycles left. I have 6 weeks of radiation ahead of me. (Not looking forward to that!) But we're also planning day trips and fun for the kids for the summer. Because life goes on. And I'm a Mama.
When I found out I had cancer, it was scary for sure. The "what if's" and the thought of scarring the kids was at the front of my mind. But I only had time to worry about that for about a millisecond before the ball got rolling. You have to remember that it was a week later that I had surgery to have a port placed and less than 2 weeks after my diagnosis before my chemo started. There wasn't really much time to worry.
However, between the time my BI Oncologist gave me the name of the cancer and the day of my consult with Dr. N. I had time to research the cancer. I know I said I haven't even typed in the name... that's because I originally thought I was told I had a very different version of cancer. One with a 91% cure rate at Dana Farber. One with no chemo on the docket. One that, once I told Dr. N. what I thought I had, he hesitated before gently letting me know that I was wrong. I had a very different sarcoma. One with bigger hurdles and a lot more to it. So that day at Dana Farber I let the worry get to me. I was afraid of getting really sick with the chemo. I was afraid of losing Harper or being forced to terminate all together.
Since then, it's been go go go. I have completed 5 full cycles of chemo and I am feeling really good. I have about a week and a half each cycle where I am exhausted and have an awful sore throat, but those side effects are minor. I did have about 2 days my very first cycle where I was laying in bed, exhausted and pregnant and wondering how on Earth I would ever care for a newborn while being so exhausted, but I've figured out how to deal with it and get moving, so I think I'll be fine.
Overall I feel pretty good each cycle. I can take the kids to school & camp. I can sit and watch them swim in the pool. I can tuck them in and read bedtime stories. I can make lunches and cook dinner. It's not what I expected, that's for sure. Life just goes on. A few weeks ago a friend posted a Huffington Post story that was so perfect and accurate.
So I've completed 5 cycles. I started cycle 6 today. I have 8 full cycles left. I have 6 weeks of radiation ahead of me. (Not looking forward to that!) But we're also planning day trips and fun for the kids for the summer. Because life goes on. And I'm a Mama.
Tuesday, June 27, 2017
Amazing Doctors
Miss Harper was born on June 23rd at 34 weeks 1 day. She's perfect and doing well in the NICU and we can't wait to have her home! Everything went well and I avoided any complications during surgery-- which was a great surprise because everyone assumed we'd be faced with some complication between blood loss or scarring or any number of scary things- both due to my cancer treatments and due to having 4 c-sections.
I don't understand how medical rankings go, but I had a high-risk OB (Dr. E.) and under her I was also followed by another high-risk OB- Dr. H. As luck would have it, Dr. E. was in France at the time of my delivery. Therefore, Dr. H. was still doing my c-section, but now under the supervision of another doctor. Again, it all went well and things were great. But I was most impressed with the fact that Dr. E. called from France to check in with Dr. H. after the delivery to make sure things were fine.
Another thing that really impressed me was that on Monday, my oncologist, Dr. N. came to visit me at B&W to check in. He didn't need to do that. I wasn't under his care at that moment, but he stopped by my room to see how everything had gone. He already knew we had a girl and that she was doing well-- he had touched base with Dr. E. as well. There was definitely a look of relief on his face when we talked. I'm not sure if I mentioned it, but, not only is my cancer extremely rare-- especially in people over 10-- I'm also probably the only person diagnosed with it while pregnant. Everyone was making educated decisions about chemo drugs to use and the course of treatment, but they were also flying by the seat of their pants and blazing their own path. (Fortunately one that has worked so far and also got a beautiful girl here safely.)
I know that there is nothing guaranteed about my treatment right now. I am so lucky to be responding and so lucky to be able to fight it like I am, but I am also so lucky to be cared for my such amazing doctors who seem to know that they're dealing with a person and not just another patient.
I don't understand how medical rankings go, but I had a high-risk OB (Dr. E.) and under her I was also followed by another high-risk OB- Dr. H. As luck would have it, Dr. E. was in France at the time of my delivery. Therefore, Dr. H. was still doing my c-section, but now under the supervision of another doctor. Again, it all went well and things were great. But I was most impressed with the fact that Dr. E. called from France to check in with Dr. H. after the delivery to make sure things were fine.
Another thing that really impressed me was that on Monday, my oncologist, Dr. N. came to visit me at B&W to check in. He didn't need to do that. I wasn't under his care at that moment, but he stopped by my room to see how everything had gone. He already knew we had a girl and that she was doing well-- he had touched base with Dr. E. as well. There was definitely a look of relief on his face when we talked. I'm not sure if I mentioned it, but, not only is my cancer extremely rare-- especially in people over 10-- I'm also probably the only person diagnosed with it while pregnant. Everyone was making educated decisions about chemo drugs to use and the course of treatment, but they were also flying by the seat of their pants and blazing their own path. (Fortunately one that has worked so far and also got a beautiful girl here safely.)
I know that there is nothing guaranteed about my treatment right now. I am so lucky to be responding and so lucky to be able to fight it like I am, but I am also so lucky to be cared for my such amazing doctors who seem to know that they're dealing with a person and not just another patient.
Cancer Backstory
Way back in January 2017 I was about 12 weeks pregnant. I had spent the better part of late December and early January sick... the kids had passed around colds, the stomach bug and a variety of odd viruses with fevers and sore throats. In mid January I noticed swelling and pain in my right sinus and assumed that the cold I had earlier had morphed into a sinus infection. I couldn't take anything other than some Tylenol when I was sick, so I figured I hadn't been able to properly clear my sinuses. When I first noticed the swelling in my sinus (and also in the lymph node in front of my right ear) I googled it and sinus infection was one of the first things to come up. The second was Maxillary Sinus Cancer. But that was only usually seen in men over 60 so I didn't really consider it. I did tell my mom one morning while dropping off H that I had cancer in my sinus. A joke... I was looking for her to affirm my suspicion that it was really a sinus infection. She agreed.
A week or so after the swelling started I was in a bit of pain from the swelling and headaches. My eye was constantly tearing from the "infection" so I headed to the Walk In on a Monday night. I had a procedur for the pregnancy scheduled for that Thursday so I really wanted to clear the infection before that. At the Walk In they wanted to give me an X-ray to check things out but they decided against it, agreed it sounded like an infection and gave me some antibiotics and sent me on my way.
Another week went by and the swelling continue to increase, and moved to a lymph node right under my jaw. It was super painful, my eye was beginning to swell in the corner near my tear ducts and I was living one extra strength Tylenol. I knew something wasn't right but I thought it was just a very deep seated infection. So a week after my first Walk in visit I went back. By now it was about 2.5 weeks that I was dealing with the symptoms with no end in sight. At the Walk In I explained the symptoms of the swelling and spreading. By this time my jaw was so painful and swollen I couldn't open it properly. My eye was swollen. My teeth on the right side hurt so badly because of the pressure. (Interestingly, according to google these are all possible sinus infection symptoms). This time at the Walk In the doctor didn't even touch my face. Instead he seemed annoyed that I was there-- it had only been a week since I was there last. Instead I was told that I probably had a viral sinus infection. Basically I'd have to suck it up and wait 8-12 weeks for it to clear up on its own. The thought of waiting that long and being in that much agony was pretty devastating but I left to wait.
But I couldn't wait long. The following weekend I noticed that my face was beginning to go numb-- my gums were numb when I brushed, the lip on my right side and all the way up to my right nostril. It was annoying, but again, could have been the sinus infection if it was pressing on a nerve. This compounded by the huge visible swelling on my cheek, the constant pain and Tylenol to combat the headaches were getting to be too much. I showed my mom again on Monday and after feeling the area which was hard and huge, she told me I needed to be seen asap. With the kiddos schedule the earliest I could get to the doctors was Wednesday the 15th of February. Thankfully this doctor didn't dismiss me in an annoyed fashion. Instead he sent me to the ER at Beth Israel to have a CT Scan done.
We waited in the ER for awhile, but finally were taken in. After the CT Tech looked at me (and asked "are you sur it's not just a pimple." 😳🙄) they finally gave me the scan. A little while later, just after midnight the doctor came in to tell me I was being admitted because the scan had found a mass in my cheek. They didn't know what it was at that point, all they knew was that it was serious.
The next morning I was transported to the other BI campus where I was admitted to the antepartum unit so they could watch me and the baby. Thursday was uneventful, but they gave me an MRI that night which only served to confirm that there was something in my sinus. The next day I was given a bedside biopsy to remove any of the mass they could. (Spoiler alert, having lidocaine injected into your nostril and then having huge tools shoved into your nostril to cut away as much tissue as possible is about as much fun as it sounds.)
Then I was sent home to wait. I was told that I would hear from the ENT doctor by Tuesday or Wednesday at the latest. At that point, they would schedule a consult so we could go over the results. So I waited... my lymph nodes continued to swell, my cheek continued to swell, my eye continued to swell, my nose was visibly deformed due to the pressure of the mass. I began to get intense, throbbing pain throughout my cheek, nose, and eye every night at which point tylenol couldn't combat it. The only thing I could do was wait out the throbbing for a few hours. Luckily it always went away eventually.
By Wednesday I was getting impatient because I hadn't heard anything so I called ENT and was told that they still didn't have results and that I'd be called on Thursday. Thursday came and I still hadn't heard so I called again. This time I got to talk to the ENT doctor... who very casually informed me that the mass indeed appeared to be malignant. They didn't know what it was exactly yet, but did I want to begin my cancer care at Dana Farber or Mass Eye and Ear? And that was it... he would contact me when he knew more (he never called back). So, that was it. Thursday, February 23rd I learned I had cancer.
The next day the Oncologist I had met at BI called me to give me the official name of my cancer. I was officially referred to Dana Farber to meet with the sarcoma team the following week.
The following week was a whirlwind. Thank goodness for Grammy and Grampy who took the helm and took care of everything as I went to a million appointments.
Tuesday 2/28 I met with my head Oncologist, Dr. Nathensen. It was the more overwhelming appointment of my entire life. He tossed around so many facts and chemotherapies and numbers my head was spinning. It was scary for sure, but he definitely knew what he was talking about- even if it made no sense to me. After meeting with Dr. Nathensen we met with Dr. Economy and Dr. Holland- high risk OBs who "specializes" in material cancers. It was at that point that we learned there was a chance we could continue the pregnancy while treating me. In that instant I immediately saw that we could get though it all. I knew it wasn't a sure thing-- any number of things could go wrong in the coming months, but the possibility that was could keep the baby was enough to keep me going. That same afternoon I was sent for an Echo to ensure my heart was okay because chemo can be damaging to the muscles of the heart.
Thursday 3/2 I met with a surgical oncologist and a radiation oncologist. They are later steps in the whole process, but they would be important down the road. I learned that I'd be scheduled for about 6 weeks of daily (M-F) radiation after the baby was born. I also learned that the end goal was to avoid surgery if we could. That same afternoon I had a port placed to make chemo infusions easier.
The last "big" thing before starting chemo on Monday was my MRIs on Friday. I was given MRIs of my head, neck, chest, abdomen, and pelvis. The nature of the cancer, my age, and a few other factors put my cancer at Stage 3. I have a "childhood" cancer, so the staging was inevitable simply because I'm so much "older" than typical. The hope, however, was that we could get out without it being Stage 4 so we had to ensure it hadn't spread. The MRI results were the ones I was most nervous about and thankfully we learned that it hadn't spread yet.
With all of the information and things in place, I was ready to start chemo on Monday, March 6th.
A week or so after the swelling started I was in a bit of pain from the swelling and headaches. My eye was constantly tearing from the "infection" so I headed to the Walk In on a Monday night. I had a procedur for the pregnancy scheduled for that Thursday so I really wanted to clear the infection before that. At the Walk In they wanted to give me an X-ray to check things out but they decided against it, agreed it sounded like an infection and gave me some antibiotics and sent me on my way.
Another week went by and the swelling continue to increase, and moved to a lymph node right under my jaw. It was super painful, my eye was beginning to swell in the corner near my tear ducts and I was living one extra strength Tylenol. I knew something wasn't right but I thought it was just a very deep seated infection. So a week after my first Walk in visit I went back. By now it was about 2.5 weeks that I was dealing with the symptoms with no end in sight. At the Walk In I explained the symptoms of the swelling and spreading. By this time my jaw was so painful and swollen I couldn't open it properly. My eye was swollen. My teeth on the right side hurt so badly because of the pressure. (Interestingly, according to google these are all possible sinus infection symptoms). This time at the Walk In the doctor didn't even touch my face. Instead he seemed annoyed that I was there-- it had only been a week since I was there last. Instead I was told that I probably had a viral sinus infection. Basically I'd have to suck it up and wait 8-12 weeks for it to clear up on its own. The thought of waiting that long and being in that much agony was pretty devastating but I left to wait.
But I couldn't wait long. The following weekend I noticed that my face was beginning to go numb-- my gums were numb when I brushed, the lip on my right side and all the way up to my right nostril. It was annoying, but again, could have been the sinus infection if it was pressing on a nerve. This compounded by the huge visible swelling on my cheek, the constant pain and Tylenol to combat the headaches were getting to be too much. I showed my mom again on Monday and after feeling the area which was hard and huge, she told me I needed to be seen asap. With the kiddos schedule the earliest I could get to the doctors was Wednesday the 15th of February. Thankfully this doctor didn't dismiss me in an annoyed fashion. Instead he sent me to the ER at Beth Israel to have a CT Scan done.
We waited in the ER for awhile, but finally were taken in. After the CT Tech looked at me (and asked "are you sur it's not just a pimple." 😳🙄) they finally gave me the scan. A little while later, just after midnight the doctor came in to tell me I was being admitted because the scan had found a mass in my cheek. They didn't know what it was at that point, all they knew was that it was serious.
The next morning I was transported to the other BI campus where I was admitted to the antepartum unit so they could watch me and the baby. Thursday was uneventful, but they gave me an MRI that night which only served to confirm that there was something in my sinus. The next day I was given a bedside biopsy to remove any of the mass they could. (Spoiler alert, having lidocaine injected into your nostril and then having huge tools shoved into your nostril to cut away as much tissue as possible is about as much fun as it sounds.)
Then I was sent home to wait. I was told that I would hear from the ENT doctor by Tuesday or Wednesday at the latest. At that point, they would schedule a consult so we could go over the results. So I waited... my lymph nodes continued to swell, my cheek continued to swell, my eye continued to swell, my nose was visibly deformed due to the pressure of the mass. I began to get intense, throbbing pain throughout my cheek, nose, and eye every night at which point tylenol couldn't combat it. The only thing I could do was wait out the throbbing for a few hours. Luckily it always went away eventually.
By Wednesday I was getting impatient because I hadn't heard anything so I called ENT and was told that they still didn't have results and that I'd be called on Thursday. Thursday came and I still hadn't heard so I called again. This time I got to talk to the ENT doctor... who very casually informed me that the mass indeed appeared to be malignant. They didn't know what it was exactly yet, but did I want to begin my cancer care at Dana Farber or Mass Eye and Ear? And that was it... he would contact me when he knew more (he never called back). So, that was it. Thursday, February 23rd I learned I had cancer.
The next day the Oncologist I had met at BI called me to give me the official name of my cancer. I was officially referred to Dana Farber to meet with the sarcoma team the following week.
The following week was a whirlwind. Thank goodness for Grammy and Grampy who took the helm and took care of everything as I went to a million appointments.
Tuesday 2/28 I met with my head Oncologist, Dr. Nathensen. It was the more overwhelming appointment of my entire life. He tossed around so many facts and chemotherapies and numbers my head was spinning. It was scary for sure, but he definitely knew what he was talking about- even if it made no sense to me. After meeting with Dr. Nathensen we met with Dr. Economy and Dr. Holland- high risk OBs who "specializes" in material cancers. It was at that point that we learned there was a chance we could continue the pregnancy while treating me. In that instant I immediately saw that we could get though it all. I knew it wasn't a sure thing-- any number of things could go wrong in the coming months, but the possibility that was could keep the baby was enough to keep me going. That same afternoon I was sent for an Echo to ensure my heart was okay because chemo can be damaging to the muscles of the heart.
Thursday 3/2 I met with a surgical oncologist and a radiation oncologist. They are later steps in the whole process, but they would be important down the road. I learned that I'd be scheduled for about 6 weeks of daily (M-F) radiation after the baby was born. I also learned that the end goal was to avoid surgery if we could. That same afternoon I had a port placed to make chemo infusions easier.
The last "big" thing before starting chemo on Monday was my MRIs on Friday. I was given MRIs of my head, neck, chest, abdomen, and pelvis. The nature of the cancer, my age, and a few other factors put my cancer at Stage 3. I have a "childhood" cancer, so the staging was inevitable simply because I'm so much "older" than typical. The hope, however, was that we could get out without it being Stage 4 so we had to ensure it hadn't spread. The MRI results were the ones I was most nervous about and thankfully we learned that it hadn't spread yet.
With all of the information and things in place, I was ready to start chemo on Monday, March 6th.
Friday, May 26, 2017
Welcome!
Once upon a time I had several kid related blogs. And then they all disappeared. (That was a sad day!). Now we're waiting for baby #6 and I have a whole lot of time on my hands. :)
I get asked constantly how I am feeling... I never know how to answer. So I always say "good!" I really do feel good pretty much of the time, but I know people want to know more so I'll use this. I purposely don't want my life to be about cancer and I try hard not to make it that way, but unfortunately right now the reality is that it's a pretty important part and so we have this. 😀
I get asked constantly how I am feeling... I never know how to answer. So I always say "good!" I really do feel good pretty much of the time, but I know people want to know more so I'll use this. I purposely don't want my life to be about cancer and I try hard not to make it that way, but unfortunately right now the reality is that it's a pretty important part and so we have this. 😀
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Playing Outside
Back when we had that one beautiful day on February vacation... Colby & Zoe were there too... b...
