Three cycles down and now I'm in the midst of where I feel the worst. I had chemo Tuesday and Wednesday so I'm feeling the aftereffects of the bone pain and throat pain. Last night was hard to sleep but another day closer to being done with the pain. :)
On Thursday I had an MRI of my face and neck and we went back on Friday for the results. I didn't look at the initial MRI back in February because I was too nervous when we first met with the oncologist, so I saw my February MRI and my new MRI for the first time on Friday. The MRI taken in February was 2.5 weeks pre-treatment so it wasn't even at my "worst". So I saw that MRI for the first time on Friday... the tumor was huge. It was invading my whole cheek, nose, eye... my lymph nodes were completely swollen. It wasn't a pretty sight. But looking at my newest MRI- about two months later from the initial- everything around my nose, eyes, and lymph nodes is completely gone. I still have some residual tumor on the soft tissue of my sinus, but things are looking pretty good. I still have 11 cycles and 30ish radiation treatments, but it's nice to see the progress in black and white.
I do tend to make myself nervous though... after the first cycle I had a lot of success, but by about the 3rd week I convinced myself that my eye was beginning to swell again. In my second cycle I had more success, but I convinced myself that there was regrowth because I had some different numbness by my nose and lip. And now in my third cycle I've convinced myself that I have a lot of regrowth right where it all started. It sounds ridiculous because I just got the great MRI plus things react to the chemo in different ways, but I feel like there's a new lump again. But I also know- just like the past two cycles- I'm probably being overly worrisome.
On another note... the baby is doing great. Our scan last week showed a baby at about 1lb 12oz. I was just under 25 weeks at that point. The baby is a mover and a shaker. :) I took my glucose tolerance test too and bombed it. That was on Tuesday last week and I haven't heard back from my doctor, so I'm wondering if they're letting it slide for a little out of pity? Ha. I was 40 points over the maximum, but I also take several doses of steroids during my Week 1 of every cycle which can impact the levels.
Either way, I have about 9 weeks until delivery day. We have zero done for this baby. As in I haven't taken a single belly picture, we haven't thought about names, the crib is in the attic, we have no car seat... we can't even fit 5 seats in the van until we by new boosters for the big kids. It stinks to go through the pregnancy like this, but we're really in survival mode right now.
Sunday, April 23
Tuesday, April 4
Let's Talk Baby
So the silver lining in life right now is that I'm pregnant. (Winded, heartburned, back-aching blissfully pregnant)
This baby, like Hunter, was non-IVF and a happy surprise. We wanted to be pregnant. I never went on any birth control after H, but my expectations weren't exactly high. I daydreamed about another miracle like H, but statistics weren't in my favor. Blood work still showed it was unlikely, we tried for over 3 years, etc. But then again, I'm learning that statistics aren't usually in my favor, so...
We talked on and off for those 3.5 years between H and the good news about IVF, but I was reluctant. I wanted to do it, but I couldn't wrap my head around the logistics of the drive in the mornings for blood work and monitoring before school. When we were trying for the boys and girls with IVF either we were kid-free or we had a nanny at the house bright and early so I could sneak out for my appointments and then run to work. Timing would be trickier and I wasn't eager to enter the world of needles again. Still, we talked about it and were planning on trying IVF again this spring hoping to be pregnant by the summer.
Trying, but not expecting, but hoping led to lots of single-line pregnancy test and silent disappointment. It's hard to share your sadness of not being pregnant when you already had 4 healthy, happy, thriving kids. So it was always on my radar, but not front-and-center.
In early December we had parent conferences so my kids all had a few half days of school, but I'd stay late for conferences. My parents would take them those afternoons and I'd run to pick them up. The last morning of conferences I couldn't get my favorite jeans to button correctly and the sweater looked atrocious. I was feeling a little sick- non-specific tired-icky- so my mind drifted to the idea of being pregnant, but I figured the odds were slim. But... I had to pick up the kids and there was a Target on the way, so I made a quick stop at Target and grabbed a 3-pack of tests before getting the gang and heading back home.
With all of the other kids Johnny has always known right away when I was pregnant. With IVF he knew the test dates so I couldn't keep that a secret and with H he picked up the tests for me. I had always planned on a big elaborate "share" for him if and when I ever got pregnant. I hadn't figured out the "share" but I knew I wanted it to be big and surprising.
Fast forward to me taking the test in secret that night. The second line came up fast and I was in shock and shaking so badly. I don't think the lines fully finished setting before I called Johnny in and told him. So much for the surprise! After he confirmed the test one of his first questions was "What about the surprise?!" Whoops.
I didn't know the dating so I did blood work and then for early ultrasounds. Since we didn't know the exact age, my doctor didn't know exactly when to schedule me for the ultrasound. We went for our first one and the sac was empty. It could be too early or it could be a blighted ovum. It was a long week to wait. I had convinced myself that I wasn't pregnant anymore and that we'd go back the following week for another empty sac, but on the second ultrasound we had a healthy beating heart and I was given a due date of August 3rd. Talk about relief!
This baby, like Hunter, was non-IVF and a happy surprise. We wanted to be pregnant. I never went on any birth control after H, but my expectations weren't exactly high. I daydreamed about another miracle like H, but statistics weren't in my favor. Blood work still showed it was unlikely, we tried for over 3 years, etc. But then again, I'm learning that statistics aren't usually in my favor, so...
We talked on and off for those 3.5 years between H and the good news about IVF, but I was reluctant. I wanted to do it, but I couldn't wrap my head around the logistics of the drive in the mornings for blood work and monitoring before school. When we were trying for the boys and girls with IVF either we were kid-free or we had a nanny at the house bright and early so I could sneak out for my appointments and then run to work. Timing would be trickier and I wasn't eager to enter the world of needles again. Still, we talked about it and were planning on trying IVF again this spring hoping to be pregnant by the summer.
Trying, but not expecting, but hoping led to lots of single-line pregnancy test and silent disappointment. It's hard to share your sadness of not being pregnant when you already had 4 healthy, happy, thriving kids. So it was always on my radar, but not front-and-center.
In early December we had parent conferences so my kids all had a few half days of school, but I'd stay late for conferences. My parents would take them those afternoons and I'd run to pick them up. The last morning of conferences I couldn't get my favorite jeans to button correctly and the sweater looked atrocious. I was feeling a little sick- non-specific tired-icky- so my mind drifted to the idea of being pregnant, but I figured the odds were slim. But... I had to pick up the kids and there was a Target on the way, so I made a quick stop at Target and grabbed a 3-pack of tests before getting the gang and heading back home.
With all of the other kids Johnny has always known right away when I was pregnant. With IVF he knew the test dates so I couldn't keep that a secret and with H he picked up the tests for me. I had always planned on a big elaborate "share" for him if and when I ever got pregnant. I hadn't figured out the "share" but I knew I wanted it to be big and surprising.
Fast forward to me taking the test in secret that night. The second line came up fast and I was in shock and shaking so badly. I don't think the lines fully finished setting before I called Johnny in and told him. So much for the surprise! After he confirmed the test one of his first questions was "What about the surprise?!" Whoops.
I didn't know the dating so I did blood work and then for early ultrasounds. Since we didn't know the exact age, my doctor didn't know exactly when to schedule me for the ultrasound. We went for our first one and the sac was empty. It could be too early or it could be a blighted ovum. It was a long week to wait. I had convinced myself that I wasn't pregnant anymore and that we'd go back the following week for another empty sac, but on the second ultrasound we had a healthy beating heart and I was given a due date of August 3rd. Talk about relief!
Saturday, April 1
I'm Back
I don't really know where to start. It's been almost four years since I was on here. I had another blog as well that I started, but I don't know the password. I just need to chronicle the here and now because it's so crazy right now.
To backtrack, we moved two summers ago and bought a new house in the town I now teach. I get to bring all of the kiddos to school with me which is great. Colby is in second grade and rocking it. The girls are in kindergarten. Sydney continues to be my social butterfly and Zoe is my sensitive little soccer player. They're so different in personality and it's so fun to watch. Hunter is four already and in preschool. He loves it- although he'll tell you he hates nap time. He's our comedian. He likes to be in to be in control of me in every way possible.
They're exhausting but perfect. Were so busy with sports and scouts and everything else going on.
And we have a new baby due in August although he or she will make their debut in June. We're thrilled and overwhelmed. The pregnancy has gone pretty well so far. I'm 22 weeks and the baby is a mover and a shaker. The kids are thrilled and can't wait to meet the new member of our family.
But things are complicated, which brings me to why I'm back.
So now to add to everything else, I have cancer. In February I was diagnosed with a really rare, aggressive sarcoma. I was 17 weeks pregnant when I got the news. Suddenly the knowns of our life became so unknown- and it remains that way.
In late January I thought I had developed a sinus infection in my right maxillary sinus. I went to the doctor and was given antibiotics and told to wait. Over the next few weeks the swelling got worse, the pain increased, my lymphnodes got huge... I was a mess. I was in constant pain and I was taking so much tylenol just to function. My girls knew not to hug me too hard on my right side because I as in pain. While all this was going on I was told by several doctors that it was just a sinus infection.
Finally, at about three and a half weeks, I went back to the doctors and they finally sent me to the ER to have a scan done. I thought I was going to be admitted for huge doses of antibiotics. There wasn't really a question in my mind-- I thought I just had an awful, impacted infection. Little did I know the CT Scan in the ER would reveal a mass in my sinus, invading the one, pushing on my eye... it was bad. It was way past the ER doctor's shift, but he stayed late that night so he could explain to me that they really didn't know, but it was likely a tumor. I was then admitted for the night so I could have another scan done and we could figure out what to do from there.
The MRI confirmed what we already knew-- I had a mass, but the scan doesn't tell you what it is. It could be benign, it could be cancerous, it could still be a bad infection. A biopsy was performed and then we just had to wait. So after 2 days I went home from the hospital just to wait. The swelling increased, I started to get awful pain in my face and eye that was severe enough to keep me awake at night. I thought I was losing my eye sight. It was scary for sure.
Finally a week later I got the call from the not-so-great Eye, Nose, and Throat doctor who casually on the phone told me "So, yeah, it's looking like a malignancy. We're going to refer you to another department..." I knew it was coming, but he was so nonchalant about it. I'm so glad I'm not dealing with him. The next day the Oncologist called me and gave me the official title of the cancer. It's long and it's scary and honestly I haven't even looked it up yet because I don't want to see what the internet says about my odds and such.
The end of February we were referred to Dana Farber Cancer Center in Boston and I met the start of my team. At this point I was about 18 weeks pregnant and I thought for sure that my consults would end with the need to terminate the pregnancy. We met with my Sarcoma doctor who explained everything in technical jargon and left me feeling very frazzled. He's great, but there was just SO much information coming at us. But that is where I learned that chemo can be "safe" while pregnant. I had no idea. We then met with an MFM who specializes in chemo and pregnancy and she gave us the "okay" to continue.
Now I know I may be taking risks but continuing the pregnancy while doing chemo but the thought of terminating was so heartbreaking. I couldn't lose my health and my baby in one fell swoop. We are "switching" one chemotherapy agent (I get 5 total) for another one due to the pregnancy, so that could hurt my odds. We're also delaying radiation by a few weeks which could hurt my odds. And I'm on a pediatric course because there isn't an adult course for the cancer I have, which could hurt my odds. What it comes down to is that we just don't know.
But here I am at just over 22 weeks pregnant. I have completed two courses of chemo- 3 weeks apart. I go on Monday and Tuesday for a four hour infusion each day. I get a cocktail of 3 different drugs right now-- we'll add the next two in the coming rounds. On Wednesday I get an injection to boost my white blood cell count. So far I'm feeling pretty good.
We break my treatment into 3 weeks: Week 1 is chemo week and I feel the most nauseous, tired, and get severe bone pain due to the white blood cell booster. That's where I am right now and I don't get out of bed or off the couch from Thursday - Sunday or so. Week 2 is my quarantine week where my white blood cells are at zero and I have to avoid sickness at all costs. I feel good, but I can't do much. Week 3 is my bounce back week. My cells are finally up high enough that I can get out of the house a little bit and feel like a fully functioning mother.
So there's still so much more, but right now I'm reacting to the treatments. I feel so much better. My pain is gone and the swelling is gone and I feel optimistic. At no point did I ever think I wouldn't beat this. I don't have a choice. I have my four kiddos (soon to be 5!) who need me there for them.
Right now I'm off of work for a year as I tackle this. If all goes exactly to plan, I should be done with chemo, radiation, and surgery come January. We're expecting setbacks and hospitalizations, but I'm hoping we can get through like rockstars.
To backtrack, we moved two summers ago and bought a new house in the town I now teach. I get to bring all of the kiddos to school with me which is great. Colby is in second grade and rocking it. The girls are in kindergarten. Sydney continues to be my social butterfly and Zoe is my sensitive little soccer player. They're so different in personality and it's so fun to watch. Hunter is four already and in preschool. He loves it- although he'll tell you he hates nap time. He's our comedian. He likes to be in to be in control of me in every way possible.
They're exhausting but perfect. Were so busy with sports and scouts and everything else going on.
And we have a new baby due in August although he or she will make their debut in June. We're thrilled and overwhelmed. The pregnancy has gone pretty well so far. I'm 22 weeks and the baby is a mover and a shaker. The kids are thrilled and can't wait to meet the new member of our family.
But things are complicated, which brings me to why I'm back.
So now to add to everything else, I have cancer. In February I was diagnosed with a really rare, aggressive sarcoma. I was 17 weeks pregnant when I got the news. Suddenly the knowns of our life became so unknown- and it remains that way.
In late January I thought I had developed a sinus infection in my right maxillary sinus. I went to the doctor and was given antibiotics and told to wait. Over the next few weeks the swelling got worse, the pain increased, my lymphnodes got huge... I was a mess. I was in constant pain and I was taking so much tylenol just to function. My girls knew not to hug me too hard on my right side because I as in pain. While all this was going on I was told by several doctors that it was just a sinus infection.
Finally, at about three and a half weeks, I went back to the doctors and they finally sent me to the ER to have a scan done. I thought I was going to be admitted for huge doses of antibiotics. There wasn't really a question in my mind-- I thought I just had an awful, impacted infection. Little did I know the CT Scan in the ER would reveal a mass in my sinus, invading the one, pushing on my eye... it was bad. It was way past the ER doctor's shift, but he stayed late that night so he could explain to me that they really didn't know, but it was likely a tumor. I was then admitted for the night so I could have another scan done and we could figure out what to do from there.
The MRI confirmed what we already knew-- I had a mass, but the scan doesn't tell you what it is. It could be benign, it could be cancerous, it could still be a bad infection. A biopsy was performed and then we just had to wait. So after 2 days I went home from the hospital just to wait. The swelling increased, I started to get awful pain in my face and eye that was severe enough to keep me awake at night. I thought I was losing my eye sight. It was scary for sure.
Finally a week later I got the call from the not-so-great Eye, Nose, and Throat doctor who casually on the phone told me "So, yeah, it's looking like a malignancy. We're going to refer you to another department..." I knew it was coming, but he was so nonchalant about it. I'm so glad I'm not dealing with him. The next day the Oncologist called me and gave me the official title of the cancer. It's long and it's scary and honestly I haven't even looked it up yet because I don't want to see what the internet says about my odds and such.
The end of February we were referred to Dana Farber Cancer Center in Boston and I met the start of my team. At this point I was about 18 weeks pregnant and I thought for sure that my consults would end with the need to terminate the pregnancy. We met with my Sarcoma doctor who explained everything in technical jargon and left me feeling very frazzled. He's great, but there was just SO much information coming at us. But that is where I learned that chemo can be "safe" while pregnant. I had no idea. We then met with an MFM who specializes in chemo and pregnancy and she gave us the "okay" to continue.
Now I know I may be taking risks but continuing the pregnancy while doing chemo but the thought of terminating was so heartbreaking. I couldn't lose my health and my baby in one fell swoop. We are "switching" one chemotherapy agent (I get 5 total) for another one due to the pregnancy, so that could hurt my odds. We're also delaying radiation by a few weeks which could hurt my odds. And I'm on a pediatric course because there isn't an adult course for the cancer I have, which could hurt my odds. What it comes down to is that we just don't know.
But here I am at just over 22 weeks pregnant. I have completed two courses of chemo- 3 weeks apart. I go on Monday and Tuesday for a four hour infusion each day. I get a cocktail of 3 different drugs right now-- we'll add the next two in the coming rounds. On Wednesday I get an injection to boost my white blood cell count. So far I'm feeling pretty good.
We break my treatment into 3 weeks: Week 1 is chemo week and I feel the most nauseous, tired, and get severe bone pain due to the white blood cell booster. That's where I am right now and I don't get out of bed or off the couch from Thursday - Sunday or so. Week 2 is my quarantine week where my white blood cells are at zero and I have to avoid sickness at all costs. I feel good, but I can't do much. Week 3 is my bounce back week. My cells are finally up high enough that I can get out of the house a little bit and feel like a fully functioning mother.
So there's still so much more, but right now I'm reacting to the treatments. I feel so much better. My pain is gone and the swelling is gone and I feel optimistic. At no point did I ever think I wouldn't beat this. I don't have a choice. I have my four kiddos (soon to be 5!) who need me there for them.
Right now I'm off of work for a year as I tackle this. If all goes exactly to plan, I should be done with chemo, radiation, and surgery come January. We're expecting setbacks and hospitalizations, but I'm hoping we can get through like rockstars.
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