The last couple days of 2011 have been pretty slow. We spent a few days hustling about, searching the web, making a lot of phone calls and filling out form after form. The biggest thing weighing on my shoulders is child care. What will I do with my kids when I have to go in for treatment or am suffering from some of the lovely side effects that my treatment may bring. We believe we have secured a spot at the preschool on the joint base for Maddie, but we were still out of luck with Tommy. He's on the waiting list, but the wait list is 4-5 months long, not very helpful since my treatment starts next week. On Wednesday I got a call from one of my oncologist who asked if there was anything else she could help me with. I told her our biggest issue at the moment was child care. Day cares in our area are extremely expensive (one place was $340/week!) and the military care facilities all had waiting lists that were 4-5 months or over a year long, depending on the base. The very next morning I get a call from the care manager, Gail, at the oncology office. She spoke with the child care director at the army base (where I have my treatment done) and they agreed to bypass the waiting list, at least temporarily, and provide child care for Thomas! Ok so it is only a temporary fix. I spoke with the director myself later that day and she said that they could provide care for the next 6 weeks, but they may be able to extend it. My hope is that Tommy can be picked up at the joint base with Maddie, before his time runs out at the army base.
In other news, I had another meeting with the oncologist this week. The visit was to confirm the plan for treatment, fill out my exceptional family member program paperwork (EFMP is for family members of military personnel that have medical conditions that require special care or special services) and pick up my meds. Dr. D talked to us about the side effects of the chemo I would be receiving. Good news, I shouldn't lose any of my hair. Bad news, diarrhea, tiredness, nausea and weird sores on my palms and bottoms of my feet (really, sores?). I've heard the diarrhea thing several times now and I'm starting to get worried. Got on a support network and read how one lady was tethered to her house due to diarrhea! To get myself prepared, I've had several conversations with friends about Depends. Yes that's right Depends, the adult diaper. I've been told they are just like wearing granny panties. Grrr, granny panties, now those are sexy! Out of curiosity I wonder if they come with cartoon characters on them? Note to my friends who always like to say that I've gone crunchy granola because I choose to use cloth diapers on Tommy, no I do not plan on going that route if it becomes necessary. I draw the line between baby poo and my own!
After we talked about side effect, we went over the time line one more time. It was confirmed that I will have radiation in combination with low does chemo 5FU for 6 weeks, followed by some rest time. Then I will have the surgery to remove what is left of the cancer and then some. After a couple weeks of recovery I will have 4-6 months of chemotherapy, known as Folfox. Once that is all over, 9-12 months, I should be golden! I will require screens for the rest of my life, but hopefully the cancer will be gone for good. Before I left the office, Dr. D brought me my drugs. OMG are there a lot of them! 4 pills in the morning, 4 pills in the evening and that is for the low does chemo. Plus I got pills to mitigate the possible side effects. I was like a walking medicine cabinet.
So some things I'm not allowed to have with chemo. No vitamins or supplements. I personally thought that maybe vitamins would maybe help the way I feel, but I was told not to take them, the chemo needs to do its work. Best thing for me is a good diet. However, I was told that most chemo patients tend to take a bland diet to fight the nausea. More importantly....I'm not allowed to drink. Now I'm not an alcoholic by any means, but I'm known to have a glass of wine or a beer now and than. I like have something every once in awhile so I was a bit upset when I was told no alcohol. Doctor said that chemo changes the taste of it so I probably wouldn't like it anyways. She said it will make the beer taste like metal. As I sit here typing I am also sipping on my last alcoholic beverage. Next year (well next year-ish, when I wake up in the morning) I will be quitting cold turkey. Ugh....
Looking at my clock I see that 2011 has ended and 2012 is now upon us. I would be a liar if I said I was looking forward to this new year. Oh well, it's to late now! It is another year and even though it is going to be rough I need to stay positive. Cancer or not, I'm a lucky person. I've got a great family and some great friends, that's all you really need.
Saturday, December 31, 2011
Tuesday, December 27, 2011
Preps
Today I started prepping for my upcoming treatment. After the ultrasound last Friday, more information about my cancer was revealed. The cancer was originally believed to be less severe than what was later shown on the ultrasound photos. The ultrasound shows that the tumor has gone deeper into the rectal wall than previously suspected and that the lymph nodes still show cancerous characteristics. I realize that information is not all that good, but at least now my doctors are able to construct a plan for my treatment.
I went in to see my radiation oncologist Dr. K. We started off by discussing what I should expect for the next couple weeks. The doctors believe that chemo-radiation therapy is the best thing for me right now. I will need 6 weeks of radiation therapy in company with low dose chemotherapy. They have decided to forgo administering the chemo intravenously and instead have it administered orally (mmm fun pills!). Now I was reassured that there is really no difference in how the chemo is administered, at least not in terms of effectiveness. There may be differences in side effects. To be honest I would rather take the pills instead of having a catheter placed. Personally I think it would be a logistical nightmare to have a catheter and subsequent fanny pack (to constantly administer the chemo) with a 15 month old that likes to pull and tug at everything.
To get ready for the radiation I had to take a special CT scan. I don't think I've been more uneasy about a medical procedure in my life. Well at least if I'm ever abducted by aliens I will be prepared. After the scan was done I received my first tattoos. Thats right almost 5 years in the Navy and I never remotely had the urge to get any ink, but no choice today. Ok so the tattoos are just little dots. They use the tattoos to position me correctly for the radiation therapy. The scans today are used to make a 3D image of my insides so the radiation can target the tumor with little exposure as possible to the other areas in my body. My radiation therapy starts next Tuesday!
Outside of therapy my biggest issue is childcare. I have been a stay at home mother since Maddie was born almost 4 years ago, a decision that I am very proud of. Maddie is now in preschool and she loves her school, so her care is not so concerning to me. However, I have a lot of reservations when it comes to sending Tommy to day care. For starters he sees a physical therapist every week. He's not walking and his therapy is very important to his development. I haven't quite figured how all of that will work. Can his therapist see him at the day care center? Can they do it on the weekend or in the evenings? Secondly, childcare is very expensive in this area. We are looking into the military CDCs, but even with my current medical situation we are in the last category for care (i.e. the bottom of the wait list). For the CDC at Ft Belvoir, it could months before we could get the kids in the center there. We are going up to Anacostia (Joint Base) tomorrow to see what is available there. Lastly, I love having that time with my kids. They are only young once. I love taking Maddie to dance class and spending time with her in the afternoons after school. Tommy is finally at an age where he's getting very interactive, his language is exploding and he's working so hard on trying to get moving. I feel awful having to send them away. Why now? Yes I realize it is for the best, I know that during my treatment I may need some help with the kids, but that doesn't mean I have to like it. I feel like my purpose in life is to take care of my family, my kids and now that is being taken away from me.
I went in to see my radiation oncologist Dr. K. We started off by discussing what I should expect for the next couple weeks. The doctors believe that chemo-radiation therapy is the best thing for me right now. I will need 6 weeks of radiation therapy in company with low dose chemotherapy. They have decided to forgo administering the chemo intravenously and instead have it administered orally (mmm fun pills!). Now I was reassured that there is really no difference in how the chemo is administered, at least not in terms of effectiveness. There may be differences in side effects. To be honest I would rather take the pills instead of having a catheter placed. Personally I think it would be a logistical nightmare to have a catheter and subsequent fanny pack (to constantly administer the chemo) with a 15 month old that likes to pull and tug at everything.
To get ready for the radiation I had to take a special CT scan. I don't think I've been more uneasy about a medical procedure in my life. Well at least if I'm ever abducted by aliens I will be prepared. After the scan was done I received my first tattoos. Thats right almost 5 years in the Navy and I never remotely had the urge to get any ink, but no choice today. Ok so the tattoos are just little dots. They use the tattoos to position me correctly for the radiation therapy. The scans today are used to make a 3D image of my insides so the radiation can target the tumor with little exposure as possible to the other areas in my body. My radiation therapy starts next Tuesday!
Outside of therapy my biggest issue is childcare. I have been a stay at home mother since Maddie was born almost 4 years ago, a decision that I am very proud of. Maddie is now in preschool and she loves her school, so her care is not so concerning to me. However, I have a lot of reservations when it comes to sending Tommy to day care. For starters he sees a physical therapist every week. He's not walking and his therapy is very important to his development. I haven't quite figured how all of that will work. Can his therapist see him at the day care center? Can they do it on the weekend or in the evenings? Secondly, childcare is very expensive in this area. We are looking into the military CDCs, but even with my current medical situation we are in the last category for care (i.e. the bottom of the wait list). For the CDC at Ft Belvoir, it could months before we could get the kids in the center there. We are going up to Anacostia (Joint Base) tomorrow to see what is available there. Lastly, I love having that time with my kids. They are only young once. I love taking Maddie to dance class and spending time with her in the afternoons after school. Tommy is finally at an age where he's getting very interactive, his language is exploding and he's working so hard on trying to get moving. I feel awful having to send them away. Why now? Yes I realize it is for the best, I know that during my treatment I may need some help with the kids, but that doesn't mean I have to like it. I feel like my purpose in life is to take care of my family, my kids and now that is being taken away from me.
Saturday, December 24, 2011
Second Opinion
So you always hear people tell you to get a second opinion before you do anything drastic. We talk a lot of talk, but when time and emotions get strained that doesn't always happen. With Tommy, we just didn't have the time to get a second opinion. Luckily we had the best doctors in our area to perform his procedure and save his life. I know that the cancer in my body needs to be dealt with swiftly but on Thursday night I told my doctor that I wanted a second opinion. I just am not ready for such a drastic surgery that would require a permanent colostomy and a permanent lifestyle change. My doctor seemed a bit hesitant at first, her main concern is time. She stated that the longer it takes to get a second opinion the longer it will take to start treatment and thus giving the cancer a chance to spread. However, she also said that she would have a referral put in on Friday and recommended a place in Fairfax that she was familiar with. She said don't worry about Tricare for the moment, make the appointment and we'll figure out the insurance side later. She also said she would call the place in Fairfax and make sure that they have all the information necessary to formulate their opinion, MRIs, CT results, etc.
Next morning, before I even had the chance to wipe the sleep out of my eyes, Dr. H calls. She has already talked to Dr. S in Fairfax. Not only can he squeeze me in today for a consult, but he can also do a rectal ultrasound there (instead of waiting to do it on Tuesday in the military hospital). I should mention here that the place in Fairfax is called Fairfax Colon and Rectal Surgeries; this is their specialty they deal with cases like mine all the time. So I gave them a call and scheduled the appointment. Couple hours later I'm in the office for my second opinion! I've never seen military medicine move so quickly!
When I arrived at the clinic, first thing I had to do was sign a waiver for my insurance. Since my referral for care wasn't quite thru the system yet, the waiver pretty much said if my insurance doesn't approve the visit than I will have to pay for it myself out of pocket. Whatever, I would like my insurance to cover this visit, but if they don't well we will figure it out. After the paperwork was done I went in to see the doctor. He talked to me a bit and said that he had talked to Dr H about my case. He said the the big determining factors for treatment was a. the location of the tumor and b. the stage (i.e. how deep it is and if it has spread). After that little chat, you can imagine there was yet another digital exam. I don't think I can count how many times I have one of those this week. Way to many fingers up my butt this week! Next they did the ultrasound. Sorry folks no sedation. I will say that compared to the scope Dr. H used the day before, which seriously was the size of a baseball bat, the ultrasound was a walk in the park.
So on to the important stuff, the doctors findings. Dr. S showed me the ultra sound photos, he explained that my tumor was fairly deep and actually butted up to vaginal wall. That isn't great, because if they did surgery now, he said it would be likely they would have to take out part of the vaginal wall as well. (WTF! Sorry, but really? We are going to have to mess with that too?) He also showed me the two enlarged lymph nodes that were also suspect on the MRI. The nodes are still indeterminate, but to be honest with you I don't think they will be able to say my lymph nodes positive for cancer until they take them out and test them.
So what does all this mean? Here is his recommended plan of action:
1. Chemo-Radiation for 6 weeks. There was no question in his mind about this one. All the tests show that in cases like mine, chemo-radation would save my life and give me the best possible chance of beating this thing once and for all.
2. 4-6 weeks recovery. During that time I would see the surgeons again, either Dr. H or himself to determine if they would have to do an abdominal perineal resection and give me a permanent colostomy or if they would be able to do a low anterior resection and save my ass (or in this case my asshole). He did tell me there was a chance that he would be able to stitch me back together, but it will depend on how the tumor reacts to the radiation. He also warned me that nothing will be certain until he is actually performing the surgery. He could get in there and find that it just isn't possible to save my hind end.
3. Next would be the surgery itself and recovery. Recovery time is about 4-6 weeks. Depending on the type of the surgery they do I will either have a temporary or permanent ostomy.
4. After I recover from surgery I will need full dose chemotherapy for 4- 6 months! This had not been mentioned before (or at least I don't remember it being mentioned) so that news was a bit shocking. At the end of chemo, if I had a temporary ostomy, than it will be removed at that time.
Full length of treatment: 9-12 months
Some other things he mentioned. Dr. S said that with rectal cancer you have to attack it aggressively, if you don't it will most likely have a local recurrence that will kill you. He said with radiation therapy I could drop my chances of a recurrence from 30-50% down to about 3%. I asked about the chemo after surgery and he said, yes that is absolutely imperative in order to treat the rest of my body. If I make it 5 years after treatment without a cancer recurrence that I will have officially beaten this.
After our visit he talked to Dr H and discussed his findings and his recommendations for treatment. She than called me just to let me know she was aware of his recommendations. The ultrasound findings pretty much confirmed her suspicions about the lymph nodes and her recommendations for chemo-radation. On Tuesday she will be talking to my oncologists to go over my case again. She said to be "on call" because she will be pulling me in at some point to have another consult and if possible she will arrange for general surgery to have my catheter put in place for chemo. She also said that she would continue to send me out for second opinions if necessary to get the answers we need (chemo-radation upfront gives us a little more time for this) and that when it does come time for surgery that if she was not comfortable performing a particular procedure that she would send me back to Dr S to do the surgery. All sounded great to me....ok well maybe not "great" but it was nice to know that I had such an aggressive advocate in my corner.
So until next week I am going to spend my time in denial. It is Christmas after all and I want it to be a joyful holiday. On Monday we will return to the issue of my treatment, but until than Merry Christmas everyone.
Next morning, before I even had the chance to wipe the sleep out of my eyes, Dr. H calls. She has already talked to Dr. S in Fairfax. Not only can he squeeze me in today for a consult, but he can also do a rectal ultrasound there (instead of waiting to do it on Tuesday in the military hospital). I should mention here that the place in Fairfax is called Fairfax Colon and Rectal Surgeries; this is their specialty they deal with cases like mine all the time. So I gave them a call and scheduled the appointment. Couple hours later I'm in the office for my second opinion! I've never seen military medicine move so quickly!
When I arrived at the clinic, first thing I had to do was sign a waiver for my insurance. Since my referral for care wasn't quite thru the system yet, the waiver pretty much said if my insurance doesn't approve the visit than I will have to pay for it myself out of pocket. Whatever, I would like my insurance to cover this visit, but if they don't well we will figure it out. After the paperwork was done I went in to see the doctor. He talked to me a bit and said that he had talked to Dr H about my case. He said the the big determining factors for treatment was a. the location of the tumor and b. the stage (i.e. how deep it is and if it has spread). After that little chat, you can imagine there was yet another digital exam. I don't think I can count how many times I have one of those this week. Way to many fingers up my butt this week! Next they did the ultrasound. Sorry folks no sedation. I will say that compared to the scope Dr. H used the day before, which seriously was the size of a baseball bat, the ultrasound was a walk in the park.
So on to the important stuff, the doctors findings. Dr. S showed me the ultra sound photos, he explained that my tumor was fairly deep and actually butted up to vaginal wall. That isn't great, because if they did surgery now, he said it would be likely they would have to take out part of the vaginal wall as well. (WTF! Sorry, but really? We are going to have to mess with that too?) He also showed me the two enlarged lymph nodes that were also suspect on the MRI. The nodes are still indeterminate, but to be honest with you I don't think they will be able to say my lymph nodes positive for cancer until they take them out and test them.
So what does all this mean? Here is his recommended plan of action:
1. Chemo-Radiation for 6 weeks. There was no question in his mind about this one. All the tests show that in cases like mine, chemo-radation would save my life and give me the best possible chance of beating this thing once and for all.
2. 4-6 weeks recovery. During that time I would see the surgeons again, either Dr. H or himself to determine if they would have to do an abdominal perineal resection and give me a permanent colostomy or if they would be able to do a low anterior resection and save my ass (or in this case my asshole). He did tell me there was a chance that he would be able to stitch me back together, but it will depend on how the tumor reacts to the radiation. He also warned me that nothing will be certain until he is actually performing the surgery. He could get in there and find that it just isn't possible to save my hind end.
3. Next would be the surgery itself and recovery. Recovery time is about 4-6 weeks. Depending on the type of the surgery they do I will either have a temporary or permanent ostomy.
4. After I recover from surgery I will need full dose chemotherapy for 4- 6 months! This had not been mentioned before (or at least I don't remember it being mentioned) so that news was a bit shocking. At the end of chemo, if I had a temporary ostomy, than it will be removed at that time.
Full length of treatment: 9-12 months
Some other things he mentioned. Dr. S said that with rectal cancer you have to attack it aggressively, if you don't it will most likely have a local recurrence that will kill you. He said with radiation therapy I could drop my chances of a recurrence from 30-50% down to about 3%. I asked about the chemo after surgery and he said, yes that is absolutely imperative in order to treat the rest of my body. If I make it 5 years after treatment without a cancer recurrence that I will have officially beaten this.
After our visit he talked to Dr H and discussed his findings and his recommendations for treatment. She than called me just to let me know she was aware of his recommendations. The ultrasound findings pretty much confirmed her suspicions about the lymph nodes and her recommendations for chemo-radation. On Tuesday she will be talking to my oncologists to go over my case again. She said to be "on call" because she will be pulling me in at some point to have another consult and if possible she will arrange for general surgery to have my catheter put in place for chemo. She also said that she would continue to send me out for second opinions if necessary to get the answers we need (chemo-radation upfront gives us a little more time for this) and that when it does come time for surgery that if she was not comfortable performing a particular procedure that she would send me back to Dr S to do the surgery. All sounded great to me....ok well maybe not "great" but it was nice to know that I had such an aggressive advocate in my corner.
So until next week I am going to spend my time in denial. It is Christmas after all and I want it to be a joyful holiday. On Monday we will return to the issue of my treatment, but until than Merry Christmas everyone.
Thursday, December 22, 2011
A Whirlwind Of Information
So last night I did a slew of tests, namely an MRI and CT scan. Both of which included some sort of dye being ingested and/or injected. Now I have had a lot of poking a proving over the years, but never an MRI. Lying there for 45 minutes reminded me of crawling around in the torpedo tubes of a submarine when I was a midshipman back in college. Besides prepping for the tests, the scans went by quickly and without major incident. I didn't receive any results last night so I came home to play the waiting game.
Last night I didn't sleep well. I'm not sure if it was from worrying about the results of the scans or that my 15 month old was also not sleeping well. I had a full day ahead of me; appointments and consults with Colon-rectal Surgery followed by Hematology-Oncology and than Radiation Oncology. I arrived at the hospital before 8 AM. My appointment was so early that the radiologist hadn't even had the time to read my scans yet. They placed me in the exam room and I waited and waited and waited. After 30-40 minutes passed the Colon-rectal surgeon Dr. H came in and started to go thru my case with me.
First the good news, my cancer is not metastatic which means it hasn't spread to any other organs. The bad news is that I have what appears to be two lymph nodes that are suspect. This means that the cancer may have spread to my lymph nodes, but they aren't certain. If the nodes are positive or if they aren't able to determine that those lymph nodes are in fact cancer free, than I will most likely have to endure chemo-radaition therapy before surgery. If the nodes are negative for cancer, I will just need to have surgery to remove the tumor. Unless of course they find something during the surgery and than I will have to do chemo-radiation after the surgery. Fun, fun, fun! Now the ugly, I am told that I have rectal cancer in the lowest possible point of my rectum. For the doctors to surgically remove the tumor they must also remove enough healthy tissue around the tumor to achieve what is called positive margins. Because of where my tumor sits and how much healthy tissue they will have to remove, they will also remove my ability to control my own bowels. Long story short I have an almost certain chance of having a colostomy for the rest of my life.
<Rant>
I'm ok with the radiation and chemo, I can come to terms with that. My hold up is the colostomy.....really a poo bag for the rest of my life! I'm only 31! How do I do all the things I like to do, like go to the beach, swim, travel etc when I have no control over my bowels? I realize I'm no Cindy Crawford, but how do you feel sexy with a poo bag attached??
<Rant Complete>
So after a long discussion about the specifics of my cancer I had to get examined. For those of you who have never endured the such an invasion of privacy, I hope you never do. I lost a lot of care about these matters when I was pregnant, but even all the prodding that comes with pregnancy did not prepare me for this. I will spare you the specifics.
After the meeting with Dr. H, I was shuttled off to see Dr. L, my hematology-oncology doctor. Another overview of the findings followed by another exam. Then off to Dr. K from radiation-oncology...guess what another overview of the findings and...wait for it....an exam!
Seriously though, it was a lot of information to take in today. I got a lot of questions answered, but there are still some outlying questions to be addressed before we proceed with therapy. To start off I have to get a rectal ultrasound so that the doctors have a better idea of what they are dealing with, like how deep the tumor may go and hopefully they will get a better look at the lymph nodes that appear suspect on my MRI. The ultrasound is scheduled for next Tuesday. Thankfully I will be somewhat sedated for this procedure (images of alien abductions just flashed into my head). I know that my doctors, especially my colon-rectal surgeon has been working with her colleagues up in Bethesda to get their professional opinion on how to address the removal of the tumor (they all agree that there isn't much hope for saving my ass....literally), but I have also requested for a second opinion if time allows. I am tentatively (depending on the results of the ultrasound) scheduled for surgery on Thursday. If the civilians (I get seen at a military hospital) can't get to me within a week or so we may have to readdress the situation, as cancer is a somewhat time sensitive disease.
Needless to say, today has been a day of information overload. I think now I will grab myself a glass of wine and go into denial for at least a little while. Tomorrow is another day.
Last night I didn't sleep well. I'm not sure if it was from worrying about the results of the scans or that my 15 month old was also not sleeping well. I had a full day ahead of me; appointments and consults with Colon-rectal Surgery followed by Hematology-Oncology and than Radiation Oncology. I arrived at the hospital before 8 AM. My appointment was so early that the radiologist hadn't even had the time to read my scans yet. They placed me in the exam room and I waited and waited and waited. After 30-40 minutes passed the Colon-rectal surgeon Dr. H came in and started to go thru my case with me.
First the good news, my cancer is not metastatic which means it hasn't spread to any other organs. The bad news is that I have what appears to be two lymph nodes that are suspect. This means that the cancer may have spread to my lymph nodes, but they aren't certain. If the nodes are positive or if they aren't able to determine that those lymph nodes are in fact cancer free, than I will most likely have to endure chemo-radaition therapy before surgery. If the nodes are negative for cancer, I will just need to have surgery to remove the tumor. Unless of course they find something during the surgery and than I will have to do chemo-radiation after the surgery. Fun, fun, fun! Now the ugly, I am told that I have rectal cancer in the lowest possible point of my rectum. For the doctors to surgically remove the tumor they must also remove enough healthy tissue around the tumor to achieve what is called positive margins. Because of where my tumor sits and how much healthy tissue they will have to remove, they will also remove my ability to control my own bowels. Long story short I have an almost certain chance of having a colostomy for the rest of my life.
<Rant>
I'm ok with the radiation and chemo, I can come to terms with that. My hold up is the colostomy.....really a poo bag for the rest of my life! I'm only 31! How do I do all the things I like to do, like go to the beach, swim, travel etc when I have no control over my bowels? I realize I'm no Cindy Crawford, but how do you feel sexy with a poo bag attached??
<Rant Complete>
So after a long discussion about the specifics of my cancer I had to get examined. For those of you who have never endured the such an invasion of privacy, I hope you never do. I lost a lot of care about these matters when I was pregnant, but even all the prodding that comes with pregnancy did not prepare me for this. I will spare you the specifics.
After the meeting with Dr. H, I was shuttled off to see Dr. L, my hematology-oncology doctor. Another overview of the findings followed by another exam. Then off to Dr. K from radiation-oncology...guess what another overview of the findings and...wait for it....an exam!
Seriously though, it was a lot of information to take in today. I got a lot of questions answered, but there are still some outlying questions to be addressed before we proceed with therapy. To start off I have to get a rectal ultrasound so that the doctors have a better idea of what they are dealing with, like how deep the tumor may go and hopefully they will get a better look at the lymph nodes that appear suspect on my MRI. The ultrasound is scheduled for next Tuesday. Thankfully I will be somewhat sedated for this procedure (images of alien abductions just flashed into my head). I know that my doctors, especially my colon-rectal surgeon has been working with her colleagues up in Bethesda to get their professional opinion on how to address the removal of the tumor (they all agree that there isn't much hope for saving my ass....literally), but I have also requested for a second opinion if time allows. I am tentatively (depending on the results of the ultrasound) scheduled for surgery on Thursday. If the civilians (I get seen at a military hospital) can't get to me within a week or so we may have to readdress the situation, as cancer is a somewhat time sensitive disease.
Needless to say, today has been a day of information overload. I think now I will grab myself a glass of wine and go into denial for at least a little while. Tomorrow is another day.
Tuesday, December 20, 2011
My Roller Coaster
My life for the last 3 years has been a constant medical roller coaster. It all started back in August of 2009, my husband was deployed to Bahrain when he called to tell me he was diagnosed with skin cancer. Unfortunately it wasn't the kind of skin cancer that you could just burn off and be done with it; it was melanoma and it was deep in his lymphatic tissue. He was medivacced back state side and they began the staging process and treatment. Thankfully the cancer had stayed in his arm and after several surgeries the doctors believed that he was cancer free. He also started in a clinical trial early the following year. Surgery and screening is really the only treatment for melanoma.
When the dust had settled from Dennis' cancer we decided to try for our second child. I know it sounds crazy, but we wanted two kids and we weren't about to live our lives in fear of the cancer or what may or may not happen. In September of 2010 I gave birth to a healthy 9 lb 12 oz baby boy, Thomas. All was right with the world or so we thought. At 6 months Tommy started showing signs of gross motor delays; the doctors gave me the line "babies progress at different times." At 9 months I brought him again and finally someone took notice. About a month or so later he was scheduled for a MRI of his brain. He was diagnosed with a very rare (by rare I mean 25-30 cases in the US each year) AVM known as a Vein of Galen Malformation (VOG or VGM) and hydrocephalus. It was the worst day of my life.
Now you may be wondering "What in the world is VOG?" Google it, it is really not the easiest thing to explain. I will say that 20 some years ago they weren't able to save kids with VOG, now a days they can save 70% of babies born with this. Of that 70% some of those babies still have lasting problems, seizures, strokes, cerebral palsy and mental delays. Tommy was lucky though, he seems to be one of the milder cases. On the 12th of July he had his first and hopefully his last embolization. He is showing no lasting effects from his VOG and has been in physical therapy to address his gross motor delay. He will continued to be monitored to ensure he does not need future treatment.
It has been just over six months since our last medical catastrophe. Seriously, what else could possibly go wrong. Well a lot I guess. Over the past couple of years I had been suffering from what I thought was internal hemorrhoids. I know, it's not a glamorous thing to be afflicted with, but lets face it shit happens. When Dennis was deployed I had them checked out and was told that they were hemorrhoids and I could have them removed if I wish. Well as explained above life happened and removal of said hemorrhoids was postponed.
Fast forward to present day. Last month I decided to go and see a colorectal specialist and she was suspect to what this "hemorrhoid" really was and requested I have a colonoscopy done. So I did, yesterday in fact. Not a very fun thing to do and something I never expected I would do at the ripe old age of 31. When all was said and done the doctor told me about the mass they found, but that she didn't believe it was a hemorrhoid. She had taken a biopsy of the mass, but she felt given my age and the consistency of the mass that it most likely wasn't cancer. Well today I get called not once but twice by the doctors office saying that they want to talk to me today about the biopsy results. I knew immediately that it was bad news. Sure enough I was right, Cancer.
I don't know much more information than that I have it. I don't know if it is localized or if it has spread. At first I was terrified but my terror has quickly turned into anger. I'm pissed! I have been dealt more shit in the last 3 year than some people see in a lifetime. I am an otherwise healthy 31 year old with a wonderful husband and two small children. I live a very low risk type of lifestyle. What the hell have I done and who the hell did I piss off to deserve all this? Who knows; it is what it is and now it is time to deal with it. To turn my anger into something productive I'm starting this blog for a couple of reasons. First being to keep friends and family updated on our state of being. I feel like Facebook is not the environment in which I want to share this type of information. Secondly I'm using this blog as a way to push out all that negative energy. I'm hoping that writing about my day to day trials may help me cope with all of this stuff that keeps falling into my lap. Who knows, maybe my ramblings will become of use to another family dealing with similar issues.
I will do my best to continue to update my blog with what is going on with my crazy family. I'm sure as I go thru the staging process I will have more to share. Until then, wish us luck.
When the dust had settled from Dennis' cancer we decided to try for our second child. I know it sounds crazy, but we wanted two kids and we weren't about to live our lives in fear of the cancer or what may or may not happen. In September of 2010 I gave birth to a healthy 9 lb 12 oz baby boy, Thomas. All was right with the world or so we thought. At 6 months Tommy started showing signs of gross motor delays; the doctors gave me the line "babies progress at different times." At 9 months I brought him again and finally someone took notice. About a month or so later he was scheduled for a MRI of his brain. He was diagnosed with a very rare (by rare I mean 25-30 cases in the US each year) AVM known as a Vein of Galen Malformation (VOG or VGM) and hydrocephalus. It was the worst day of my life.
Now you may be wondering "What in the world is VOG?" Google it, it is really not the easiest thing to explain. I will say that 20 some years ago they weren't able to save kids with VOG, now a days they can save 70% of babies born with this. Of that 70% some of those babies still have lasting problems, seizures, strokes, cerebral palsy and mental delays. Tommy was lucky though, he seems to be one of the milder cases. On the 12th of July he had his first and hopefully his last embolization. He is showing no lasting effects from his VOG and has been in physical therapy to address his gross motor delay. He will continued to be monitored to ensure he does not need future treatment.
It has been just over six months since our last medical catastrophe. Seriously, what else could possibly go wrong. Well a lot I guess. Over the past couple of years I had been suffering from what I thought was internal hemorrhoids. I know, it's not a glamorous thing to be afflicted with, but lets face it shit happens. When Dennis was deployed I had them checked out and was told that they were hemorrhoids and I could have them removed if I wish. Well as explained above life happened and removal of said hemorrhoids was postponed.
Fast forward to present day. Last month I decided to go and see a colorectal specialist and she was suspect to what this "hemorrhoid" really was and requested I have a colonoscopy done. So I did, yesterday in fact. Not a very fun thing to do and something I never expected I would do at the ripe old age of 31. When all was said and done the doctor told me about the mass they found, but that she didn't believe it was a hemorrhoid. She had taken a biopsy of the mass, but she felt given my age and the consistency of the mass that it most likely wasn't cancer. Well today I get called not once but twice by the doctors office saying that they want to talk to me today about the biopsy results. I knew immediately that it was bad news. Sure enough I was right, Cancer.
I don't know much more information than that I have it. I don't know if it is localized or if it has spread. At first I was terrified but my terror has quickly turned into anger. I'm pissed! I have been dealt more shit in the last 3 year than some people see in a lifetime. I am an otherwise healthy 31 year old with a wonderful husband and two small children. I live a very low risk type of lifestyle. What the hell have I done and who the hell did I piss off to deserve all this? Who knows; it is what it is and now it is time to deal with it. To turn my anger into something productive I'm starting this blog for a couple of reasons. First being to keep friends and family updated on our state of being. I feel like Facebook is not the environment in which I want to share this type of information. Secondly I'm using this blog as a way to push out all that negative energy. I'm hoping that writing about my day to day trials may help me cope with all of this stuff that keeps falling into my lap. Who knows, maybe my ramblings will become of use to another family dealing with similar issues.
I will do my best to continue to update my blog with what is going on with my crazy family. I'm sure as I go thru the staging process I will have more to share. Until then, wish us luck.
Subscribe to:
Posts (Atom)