An update

11 days ago I had another craniotomy. During my last routine check up at the beginning of July it was discovered that the brain tumor had returned. This was disappointing, frustrating and unbelievable news to say the least. It was very small in comparison to the tumor in December, which was why I didn't really feel anything this time. I will have radiation in 2 more weeks, then we will go from there.  I've always enjoyed social media and being very open and public with my story. For now, it feels better to pull back and be more private. I have taken a break from Facebook and will most likely not be updating this blog very often. If you would like to contact me my email is b_rogers60@hotmail.com.

Breast MRI

My breast MRI was clear. There is no nodule!!! It is likely that the nodule seen on the pet ct was benign and has resolved on it's own. I'm so relieved! I will follow up in 6 months with another breast MRI just to make sure things still look good.

Brain MRI and breast nodule

I had a brain MRI on Wednesday and everything is stable. The MRI showed that everything is healing up nicely from the surgery. I saw my clinical trial doctor and talked to my neurosurgeon over the phone. The mild headaches I have been having are normal and the right side facial swelling is from the surgery and will eventually go away. I saw the breast doctor and she was unable to feel the nodule so I will need to have a breast MRI. So this means that I will be heading back down to Anderson next week or the week after. I have a chest CT scheduled for the last week in February. I am going to try to get the MRI and CT scheduled at the same time so I only have to make one trip.

Mammogram/Ultrasound/ Biopsy.

Mammogram, check. Ultrasound- check. Biopsy- not done!

 It seems everyone is having a hard time finding the nodule that showed up on the pet ct. My mammogram was negative. I had 3 US done today, one by a US tech and 2 others by doctors. I was told at the end that this test was negative too. They didn't see anything to biopsy. I was told with a smile I could go home.

 As much as I wanted too I knew better and went to the sarcoma center to get in contact with my doctor. He is going to have me see a breast doctor next week.

Sooo more waiting. But I do feel better that it is either still really tiny or went away.

Schedule, getting off Keppra and last day of my 20s!

It takes at lot longer to get a breast biopsy at Anderson than we first thought. I will have a mammogram and biopsy at the beginning of next week. I will then have to wait 7-10 days for the results. But at least within that week I have my first clinical trial brain MRI so I have more results to obsess about to take my mind of the other ones.

Today is the last day I will be taking the anti seizure medication Keppra. I have been having a skin reaction to it and since I have not had a seizure, doctor said that I could take a half dose for 3 days then stop. I am very happy about this because it made me quite sleepy.

Today is the last day in my twenties!!! It's been a crazy decade. Though I have been dealing with this illness since 2 months after turning 20, I have had many more good times these past 10 years than bad times. I do a lot when I am in remission and feeling well. I have had 7 major surgeries and 2 years of chemo. It sounds like a lot but it was over 10 years, leaving lots of time for fun. During my 20s I was able to:

-return to college and graduate with my Bachelors in Nursing. And when I was feeling well I had a great time in college, sometimes probably a little too much fun : )
-I was able to travel a lot, the farthest being Singapore
-I worked at a few jobs and finally in 2011 found my area of nursing, moved back to TX, and now have the best job EVER!
 - I became a mama to the most handsome little chihuahua of all time named Toby.
-I met and married the love of my life!!
-I lived in Rhode Island for a little over a year and had the opportunity to experience another part of the country.

I learned so much in my 20s. Sometimes they were painful lessons, but I needed them to grow. I sometimes think what life would be like if I had never gotten cancer. I for sure wouldn't be who I am today and I wouldn't be where I am today. Having cancer calmed me down and bit and slowed me down, 2 things that I really needed ten years ago. Do I wish I could have gotten those lessons a different way, of course, but knowing me I probably wouldn't have learned what I needed to. If I could go back in time and was given a delete cancer button, I wouldn't press it. Are there some things I would change, of course! I would have gone to a different doctor initially, I would have a freezer full of my eggs locked down somewhere and I would most definitely delete a recurrence or two, maybe 3. But other than that, as painful as it sometimes was, I wouldn't trade it. Life just wouldn't be what it is now if I had taken a different path. Even though I'm going through it again, I am still so very grateful for all that I have in my life.


So tomorrow will be the start of a new chapter. I look forward to see what it holds.

Pet CT results

UGH......Pet ct is clear except for a very small nodule in my right breast.

Like so small I can't feel it and my doctor and his mid level provider had trouble feeling it.

But big enough to where we could see that the ugly little thing lit up on the pet ct, which is very concerning that it lit up.

SO...I am going to need a biopsy and most likely it will need to be removed.

Here is the part that makes me want to scream. I just assumed it was rhabdo, but because of it's location the doctor said it could be primary breast cancer. He said there is a 1/3 chance it's primary breast cancer, 1/3 of a chance rhabdo, 1/3 of a chance it's benign.

We really didn't discuss chemo today because we need to figure out what this is first.

Since they won't be able to biopsy until Monday or Tuesday, I'm going to fly home tomorrow. I miss my husband and I need a few days to pretend like none of this is happening.

Back in Houston

I'm back at my parents. I flew in on Thursday, my first day completely off of steroids. I felt really off the whole day and still don't fell right but that is to be expected coming off 4 weeks of dexamethasone. Fortunately that weird fuzzy brain feeling is getting better each day. Still swollen....I am drinking a lot of dandelion tea (natural diuretic), plenty of fresh green juice, and restricting my salt intake. I'm doing all I can to help my body get this swelling and fat off.

Yesterday I had a full body pet ct. I had the most amazing nurse. She has been a nurse for 36 years and was so sweet. She started an IV at a common place that people try on me, they never get it. Even when I tell them this, I still let them try sometimes. She is the first one ever to get it. We didn't even talk about it. She saw it, went for it and it was done. I think that was the easiest IV start that I have had in 10 years. I am a hard stick, I usually need the IV team. I wasn't worried about the scan when I went I was worried how many times I was going to get poked, because sometimes it can get a little crazy. Very thankful I had her for my nurse.

I had labs drawn yesterday. Thought it was so weird that a type and cross was ordered. This is normally done right before you receive some type of blood product. Come to find out steroids drop your platelet count and mine have DROPPED. No transfusion needed now. I used to get a lot lower when I was on chemo before I needed a tranfusion and would be fine so I'm not worried.  I just need to have more labs Wednesday and  make sure they are the same or going up before I go back home.

I won't get PET results until Wednesday when I see my medical oncologist and we will also discuss chemo at that time.

Cancer History

I was speaking with my friend for a few minutes last week ( hi Melissa!!!) and I realized that she did not know most of my cancer "history" I guess you can call it. And why would she, we just me when I started my new job in May. Then I started to realize most of my friends don't know the whole story. Of course my college friends do, because they were there from the beginning. I had to go over my medical history for the clinical trial team the other day and even I was getting confused.  Until a few years ago I had it down, but now it's been 10 years and I think it will just be better to have a compiled list. So for anyone who is interested on catching up, here it goes. I will elaborate more on this one than the one I will keep for myself.

This March will be 10 years since my initial cance diagnosis.

-In the fall of 2002 I was a college sophomore. I started playing flag football with my dorms team. During one game I was knocked down by a guy onto my butt. The fall did not cause the cancer. Over the next few days I noticed something that felt like a bruised area on my left buttock. For 5 months!!! I saw an idiot doctor who said it was a muscle contusion and was enjoying taking my money for physical therapy. I also saw another doctor in the winter who said it was just a muscle contusion. Fortunately in March 2003 my mom took me to a doctor who immediately did a biopsy.

-March 2003, 20 years old, still a sophmore. The same day I found out I was got an interview for nursing school was the same day I found out I had cancer. My parents were living in El Paso at the time because of my dad's job. I was in college in Arlington at UTA. My dad told me over the phone. I cried so loudly the the girl next door came over to see what was happening. I told her and she said that she would go with me to the doctor that I had been refereed to the next morning, My parents made it in the next evening.

-At diagnosis I had a grapefruit size tumor in my left buttock. It didn't seem that big to me, still seemed like a really big bruised area because most of the tumor was up in my lower pelvis. I found out it was cancer on Monday, Thursday learned that I had lung metastasis and Friday I had my first surgery ever, a thoracotomy to remove 2 lung lesions.

- One month after that I started chemo, this would last for a year with one break for surgery. I had to leave college and move home.

-June 2003, left buttock tumor is removed after a few months of chemo. Chemo worked well and most of the tumor was dead. This was my hardest surgery to date, I was in the hospital for weeks and had to relearn how to walk.

- Spring 2004, finished chemo, went back to college. Reapplied to nursing school and got in.

-at this point I'm being scanned, buttock and lungs every 3 months. Later in 2004, there is a new lung nodule on my left lung. I have thoracotomy #2

-2005 another lung nodule on my right side. I have thoracotomy #3. I am able to stay in school through all of these. My fastest turn around time was surgery on Friday, back in class by Tuesday. It was hard and I was sore, but worth it. I wanted to graduate!

2007- another lesion is seen on the right lung. Thoracotomy #4

2008- this was a scary one. I had a softball size tumor show up under my sternum with in 3 months. At the time of finding it is not operable because it's so close to my heart. I immediately start chemo. This chemo will last for one year with a break for surgery. The chemo is successful in shrinking the tumor making it operable.

-July 2009 While looking at the tumor during a ct it is hard for the radiologist to find my right coronary artery. It is discovered that I have had a heart defect since birth. Absolutely asympotomatic, I did sports all through high school. The tumor is removed and the heart defect are fixed in one 8 hour surgery at Texas Children's. I needed to be there because of the cardiologist.

Oct 2009- finished chemo and went back to working

Feb 2010- met the love of my life and married him exactly one year later in 2011 : )

Dec 2012- Thought I had a sinus infection.....

Dec 27- Right side brain tumor removal

Watch and wait

I have been accepted into the clinical trial and was chosen by the computer for watch and wait. So for now (hopefully never) no radiation. I will get my first MRI with the trial in a few weeks.

At first I didn't care which one was picked, I really liked that I did not have to decide. But as soon as I heard "observation" from the nurse I just melted into the couch. I hadn't been that relaxed in weeks. I started to have a much harder time with the steroids on Thursday than I thought might happen. And the idea that I may have to have radiation in a few days involving more steroids was making me a little nervous.

On Thursday I flew back to Dallas. I was a little nervous to be by myself that long, I guess because I have had someone with me for almost 4 weeks now. But I just tried to relax and read. Everything was fine on the flight. I was worried how my head would feel with the pressure. I had no pain. Definitely some weird pressure and gurgling still going up in there, but it was a very comfortable flight.

 About mid day before I left I noticed my swelling start to increase. Even though I'm tapering off the cumulative effects of being on dexamethasone for 4 weeks just caught up with me and it's like overnight the swelling was everywhere and worse. Extended steroid use also causes your body to start transferring fat pockets to weird places, like you torso. I was pretty uncomfortable, the worst being my abdomen because I felt like I wasn't able to take a deep breath and that just makes me feel anxious. I have a pretty small frame so I just felt like I had so much weight on me. I have also started to have muscle atrophy. I knew this could happen with long term use but I guess with me it's at 4 weeks. My legs felt so heavy Thursday and everyday since it just gets harder and harder to use my legs. I can still walk and do everything I need to do but it's definitely a noticeable difference, especially trying to get up or kneel. The increase in the taper caused horrible joint pain. I had no idea that this was something that happened and woke up Friday morning around 3am feeling like I had been hit in the knees with hammers. It's worse at night, I'm not sure what it is about 3-4am that it wants to kick in. But I can usually get it to ease up by getting up and walking around. I was so scared when it happened, I was thinking all kind of crazy reasons why I would be having joint pain. Fortunately I found a great on line forum of patients using dexamethasone. It had a lot of helpful information and a lot of people have this joint pain when they are tapering so that made me feel better.

I've been really surprised that I have been feeling worse 2 weeks after surgery than right after, it's normally the opposite for me.

Other than all the craziness from the steroids I have REALLY enjoyed being at home with Melvinn. We had a really nice weekend.

I will go back to Houston later this week for my Pet ct and then the next week meet with my oncologist. We still need to discuss if chemo is an option. Hopefully we will be discussing this over negative pet ct results!

Jan 9th Dr. Appointment update

Hello!! Thank you to everyone who has called or text today. I'm so sorry that I was not able to explain everything to text for everyone but it is just really too much information to text and for my mental health, it really is best for me to just say it once. That's why I love this blog!

The staples are out. It was easy, painless and I feel so much better, The scar is so nice and thin, it's not going to be noticeable once my hair comes back, which it has already started to grow in. I knew I could wash my hair tomorrow, but was very disappointed to learn that I can only use baby shampoo for two weeks. This will be interesting, but at least my hair will be clean. I seriously feel like Willow Smith with my asymmetric haircut. I'm so happy it's not as bad as I thought it would be! I have most of my hair.

The pathology report shows that it was rhabdomyosarcoma, meaning same thing I had before. So I guess good news.... it's not a weird new cancer!

Treatment options: Since rhabdo normally doesnt go to the brain, there is not a clear cut treatment protocol. Whole brain radiation is an option. The thinking behind that is if there is one tumor there may be other cancer cells in the brain lurking, nuke them all. But with that you are also risking life long cognitive issues. For now this is not an option. Especially at MD Anderson. Outside of MDA it's standard, but the highly skilled surgeons at MDA have better succcess rates than outside so luckily for me this option has been taken off the table.

The other options are watch/wait or gamma knife radiation to empty cavity. Because the tumor was in the brain, there is no way to get really nice big clean margins because then you are taking brain tissue. So there is always a risk of there being a few cells left behind. Do you wait and see if another tumor starts to grow, or radiate the tiny area, possibly causing problems when not needed. There is no clear answer. But fortunately MDA has a clinical trial focusing on that right now that I am almost accepted into pending one or two more things. I met the team today and I love them! I have always heard such great things about clinical trials from other patients. You are followed so closely. Best part about it for me is I don't have to make the decision. A computer will decide if I get radiation or watch and wait. Either way I will be very closely monitored. If I do radiation, it will be next week, one day treatment. If I do watch and wait I will have MRI in one month. And if I am on the watch and wait, this does not remove me from treatment. If ever they suspect something may be growing, I get the gamma radiation. I'm sure that would drive some people crazy not getting to choose, but it's good for me.

I did not get to see my medical oncologist today. I have a PET ct next Friday, just to be sure nothing else is going on. I will then meet with him the next week to see what he thinks about chemo. We have been basically told that chemo is really not best for this because many don't cross the blood brain barrier. But he did have some ideas last time, so I'm very interested to see what he has to say.

As soon as my neuro surgeon saw me he said something about my "chipmunk cheeks" and then said I could speed up the taper on my steroids. So I will be off 3 days earlier and he said all this puffiness should go away with in a week or two after stopping. I still have to take seizure meds for 3 more months. I have been cleared for most activity, but still need to remember I just had surgery 2 weeks ago. And I have been cleared for yoga!!! Of course I got the listen to my body talk and I will. If all I can do is a few postures and then lay in the hot room for 60 minutes on my towel, then that's all I will do, happily and without shame! I'm just happy I'm cleared to go.

Because January is filled with so many what ifs and scans I will not be attempting to come back to work this month. I need to get all of this cleared up first.

I have been cleared to fly and will be coming home tomorrow. It may only be for a few days but I'm so happy! I really need a few days to just act like this isn't happening, clean my house (yes, yes, light cleaning, i know), watch all my dvr shows (Dexter and Homeland finales!!!!))))  and spend time with my best friend, I've really missed him.

Apologies now if I'm not my usual social self when I'm at home. I am so embarrassed by how I look. Seriously, I look like I have Cushings!!! And I need to rest. Also, steroids greatly depress your immunity so if you want to see me and I quiz you, which i will, about your health history over the last 2 weeks don't be offended. The last thing I need is a cold right now.

I really hope I can stay at least through Tuesday. I have been trying to see a new gyn and I have had an appointment waiting for almost 3 months!! 3 months!!! I would hate to have to re schedule, but if I'm picked for radiation it may have to be that day.

Again, thank you to everyone who checked on me today. I am feeling a little overwhelmed from today but I think a visit home will be just what I need to feel better.

Just waiting....

Patience has never been a virtue of mine and the waiting this past week coupled with all these meds has been hard. Honestly I'm just really bored too. I'm used to moving around a lot and being busy. Fortunately I have been able to get out a little, went to Barnes and Noble to get some books, ordered some from Amazon that got here really fast. I have always loved learning about nutrition but have definitely become a little obsessed these last few days, finding new blogs and books on certain diets....paleo/primal vs. vegan. It's just all so interesting how everyone thinks they are right! I've just decided  to read, enjoy and take what information I need for myself and family to make smart eating choices.

Saturday was hard. For some reason I thought it would be a good idea to take my AM steroid dose with a big glass of fresh veggie juice instead of my normal protein/carb including meal. BIG MISTAKE. I don't believe that I received any of that dose and seemed to be having withdrawal symptoms all day. It was terrible! Lesson learned. I'm being much more careful at how I take my medicine.

Other than that things have been ok. Not much pain, sleeping better and continuing to taper off meds. I even did a little light exercise this morning. Went up and down the stairs about 10 times. It felt really good. May go out for a walk later today.

New years eve

Well, this is definitely not how I had planned to spend today but I'm happy to at least be home and not in the hospital.

Let me first start off by saying thank you to you all. I have felt every single beam of love that has been sent my way. I have not been alone once since the start of this. My husband, parents, in laws, and sister have gone above and beyond to care for me and make sure I have wanted for nothing. Friends I am so blessed. I am exploding with gratitude right now.  Thank you. Thank you for supporting me.

I'm going to try to answer a few questions I've gotten in the last 2 days in one place. I know my sister and honey have been ministers of info so hopefully this is just a second update.

- physically: mild to no pain. I'm on very high doses of steroids to help prevent brain swelling. This is making me feel the most uncomfortable. Facial swelling, abdominal swelling, huge increase in appetite, mood swings and the not sleeping. Sleep is usually my refuge so it's been hard to not be able to escape. And sleep aides don't work. The steroids are too high at this point. I do have a xanax but the effect is really laughable at this point. They prepared me for this, it's just going to be uncomfortable for a while. But I'll take it. I do know there are a lot of people who would love to only have some steroid discomfort post op. My dose tomorrow will start a slow taper through jan 19

-Emotionally: it still hasn't completely kicked in what is really happening. It was less than 2 weeks from discovery to surgery so I didn't really have time to process it. I've been very hard on myself. Last night when I was awake I laid very quietly in bed and basically mentally beat myself up for a few hours. Maybe if I had eaten this, tried this eating plan, taken this supplement, not eaten that cupcake, used only natural cleansers in the house, done more yoga, been nicer, had better karma. blah, blah, blah. At the end of it I had decided that I just didn't do enough, i failed and obviously i didn't deserve it. Which is terrible and crazy and I know it's not true but my head just went there last night. So i cried a little this morning, just got all that crap out of my system and decided I'm not doing that again. I'm going to leave a book out in the kitchen for when I can't sleep and I will get up and read.

-Mel is still here with me at my parents in Houston. He will most likely be going back tomorrow to Dallas because he needs to work. His job allows for me to have insurance, so this is very necessary for him to get back. The thought of him leaving makes me want to just throw myself down and start crying and whining but I'm not going to. No tears tomorrow, I'm not going to make him leaving any harder than necessary. I know that when dealing with stuff like this we have to maximize PTO and vacation hours. Houston friends have asked when they can come visit. This is week. This is the week I will need to see your beautiful faces. Anytime just text me first. SWSC friends: if y'all are going to have a drink or anything fun after work or on the weekend, would you all please invite my honey. He loves y'all and I hate to think of him being up there all by himself. Just text me and I will send his number.

-I have no info on further treatment. I do know that the prelim look at tumor in the OR did look like what I had before. Official report will not be back until jan 9ish. The tumor was completely removed and had not tried to attach to skull so the surgeon was able to take it out with great care, touching no other part of my brain. Therefor lessening the spread of cells. Treatment could include chemo, radiation, watch and wait. I should have a better idea about what will happen by mid January. I have apparently said something that have caused concern over the last few years involving chemo. I am not going to refuse treatment but really who is ever excited to get back on chemo. So no worries, if I need treatment I will get it.

-I will be down here until at least jan 10. As much as I would love to roll back to Plano tomorrow, I know its best to be somewhere where there is someone at home at all times at least for the the first week post op.

-I don't do certain things like numbers or talk about prognosis. I know that is how a lot of people operate, but it drives me crazy. So if you ask me anything like that and I just look at you blankly that is why. I don't have a date stamp on the bottom of my foot and so I don't act like it. And I know that is never what is being meant by anyone who asks about chances and numbers and such, this is just how my brain works. You will never catch me going over numbers with my doctor like that. I've always admired people who can get in there look at clinical trials, crunch out all these percentages that it may work, it may not, get in there and look at the prognosis and not have it freak them out. I'm not one of those people. I can get all the information I need without having to talk about certain things. I'm not in denial, this is just how I process things and for me there are just certain words that make me feel the need to get out of the room. If you find some numbers you want to share by all means tell me and I will give you my dads email. He loves that stuff. And please don't ever be afraid to ask me anything. I just wanted to explain why some questions may get a certain response from me.

-It's OK to not know what to say. Hell, I don't even know what to say about all this. And that's OK.

Today has been good so far. I made Melvinn breakfast this morning. Nothing special just some eggs but it just felt so normal and therapeutic to cook something. Its really the most normal I have felt in several days. I'm off to feed the steroid monster again. I swear I have never eaten this much in my life!!!

there is no place like home

I was just discharged and I'm now at my parents. The tumor has been removed. It does appear to be a met but still waiting on full path. This was very hard to hear, as I always had hope it was benign. But the initial look does look like rhabdo, but I will just have to be patient and wait until about Jan 9.

Feeling fuzzy, will update more later.

Twas the night before surgery...

Of course I should be sleeping but I'm so nervous! Mel and I had a great date night. I had the most delicious lobster tail and oysters and creme brule. I decided to eat every single thing I wanted. Just had my last delicious sips of water and now I am npo until tomorrow. I know I'm not really hungry right now but just thinking I can't eat and I'm already craving a snack.

Thank you all for the huge outpouring of love. I can feel it, I really can.

Merry Christmas!

Though my holiday looked completely different from what I had planned I'm still happy to report that we all had a great Christmas. I decided on Christmas eve that I was going to choose Joy. Just that simple. I was going to look around, see all the awesome in my life and be happy. And you know what friends, really wasn't hard at all! I have so much to be thankful for. My parents made a delicious dinner including fried turkey. I loaded up on food, napped then all of us, my family and in laws went to see a movie. It was really a pretty fun day we all had yesterday. And I got some reallly great presents, my favorite being a juicing book from sister I plan to read during my recovery. Thanks Camille!

I am up early trying to get prepped for surgery tomorrow. Reading some hospital info, getting a bag packed. In a few hours my honey will be taking me to get my hair done from my favorite stylists who has been so gracious to come in on her off day to make me pretty. Then we will be having a pre surgery date night and staying closer into town to make it easier to be up bright and early for surgery.

I'm so ready to get this thing out of my head tomorrow!!

Surgery is next Thursday!

Yesterday I met with my neuro surgeon. The tumor is in my right temporal lobe, cherry tomato size and is operable. Good news! It will be biopsied after. It of course may be metastsis from previous cancer but I'm still hopeful its benign.

I am feeling well. Little pain thanks to the sterioids but they do make me feel very off. Especially the anti seizure meds. They make me so tired. Appetite continues to be good, probably due to the steroids.

Tomorrow I will meet with cardio and anesthesia for pre op eval. A little annoyed by this because I was just cleared for surgery tomorrow- a few fun cosmetic procedures, which of course at this point are not happening. But I completely understand the need for the re evaluation.

In Houston

I am in Houston now. We arrived last night. I needed to get my ct/mri cds to Anderson. We could have overnight fed exed but hubby is a genius and felt we could beat fed ex plus we wouldnt risk them getting lost with all the holiday mail, so we drove down last night and dropped them off this morning. Well Mel drove. I still on seizure precautions until further notice. I have not had a seizure and am on seizure meds but of course better to be safe.

I feel a lot better than I did last week when I thought I had a sinus infection. My head doesn't hurt anymore thanks to the steroids but I do feel quite off. I'm not used to taking this much medicine.

 I went to bikram yoga yesterday. I was a little anxious because the doctor didn't think it was the best idea but as long as I promised to tell the teacher what was happening I was allowed. I felt so supported through class. Definitely wasn't my best class but I did it. My nausea and anxiety have decreased. Appetite continues to get better. I cant wait to get back to the hot room.

Tomorrow morning I will meet with neuro. Hoping to hear some good news.

Dissapointing News

I have been having off and on sinus infection symptoms since early 2011. They have always resolved with antibiotics ans/or steroids. Until theses last few weeks. I woke up on Thanksgiving day with a headache. Assumed it was sinus related and went to the doctor 3 days later and received antibiotics and steroids. After the course of antibiotics I didn't feel any better. Steroids helped but shortly after stopping them I felt worse. I received a different type of antibiotic from another doc. No improvement. On Friday night my head hurt so bad that my husband drove me to an urgent care facility. After a quick CT scan it was revealed that there is a tumor in my head. I was given some medication, steroids to help with the swelling and transferred by ambulance to a hospital nearby to be admitted to be stabilized. I was released today and will followup with doctors at MD Anderson on Wednesday. I am heart broken. I thought that 3 years was far enough out from the cancer to not have to worry about anything like this. Good news is that it is a solitary nodule, small and operable, possibly benign because it seems to be slow growing. It has possibly been there since 2011. While I am beyond disappointed and heartbroken I am still so blessed. A lot of people in the country got horrible news on Friday. When I got mine I got to be comforted by my wonderful husband. So many on Friday never got that hug from there loved ones. I have a good feeling about this. I just need some more time to adjust. I will keep everyone posted. Thank you for the the thoughts, prayers and positive energy. I feel it.

Stable CT scan

Yummy gumbo and bbq I had while at home. Can't get good versions of these in New England.

Last month I traveled to Houston for my 3 month chest ct scan. I am happy to report that my ct scan remains stable! I also saw my cardiologist and I am good from that standpoint too. It has been determined that the chest pain was musculoskeletal. I really think a lot of it was from anxiety too, because now that I know there is not a tumor causing the pain it's almost all gone away. This scan marked two years of stable ct scans so for the first time ever I have been moved from 3 month check ups to 4 months. One month may not sound like a lot but this is huge in the sarcoma world. I was happy and nervous all at this same time. This will be the longest time in almost 9 years I will go without seeing a doctor, but I'm ready for it. I've been waiting for this good news for a long time!

A little scare...

This was taken a few weeks ago at a Kool and the Gang Concert. We had so much fun and I was fortunately able to ignore the pain for this night with the help of some ibuprofen.

Well actually a kind of big scare. A few weeks ago I started to have some occasional left chest pain, right around my heart. I have had post surgical pain from the chest tumor removal (sternotomy, the one smack dab in the middle of my chest) in 2009 but it has always been concentrated to the right side of my chest. Imagine my panic when I started to feel pain else where. I tried to ignore it, sure that I had pushed to hard in my bikram yoga class. After all we do some crazy things in there and I was sure that I had just gone to far. Fast forward two week and the pain in increasing and now radiating to my neck, jaw and arm. Sounds kind of scary right, kind of like a heart attack scary. By this point I was so anxious that I was sure I was making what I was feeling even worse. I have had my heart monitored since the last round of chemo in 2010 because I received a chemo call adriamycin that can be very toxic to the heart. All of my tests have been good since then and some have even improved, so I really didn't think it was my heart but at this point I knew I had to get checked out. One family practice doctor, a cardiologist, chest x ray and an echo cardiogram later I am cleared on my heart. I am soooo relieved but also a little nervous about what may be causing the pain. I find that as being someone who has dealt with cancer, recurrence is always in the back of my mind. I'm constantly hoping for the best. My chest x-ray was clear so that makes me feel a lot better. I will have CT scans in Houston in a few weeks. I always get a little restless around this time but I just try to stay focused on what I need to do and look at all of the blessings I have in my life. My hubby will be going with me this time. No matter how crazy and nervous I get he can always calm me down and make me laugh. I am a lucky girl and so thankful for him.