22 4 / 2012
The other day (I assume this is because Chris got tired of my whining) he sent an email to my oncologist (as me) letting her know that my left hip has been aching every so often. She wrote back to say that she wanted a full removal of that mass that continually gets brighter on each pet scan - and that the surgeons office would be calling me by mid week to schedule a visit and an MRI - so those will be happening tomorrow. No one thinks that this spot is cancer (a few things wouldn’t line up if it were) however this is a check since it’s better to be safe than sorry. My doctor was confident enough that it wasn’t cancer to allow me to have the port taken out of my chest which is now all healed up! I figure that I’ll want to know what that mass is before having another child, etc. so the sooner the better I guess! I’ll keep my blog updated. For now - some type of autoimmune disorder or phenomenon seems most suspect. Tomorrow morning at 9:30 I’ll be getting blood work done and then I’ll have the MRI. I’ll be meeting with the sarcoma surgeon a few hours later to discuss surgery and removal.
05 12 / 2011
Message from my doctor:
“Hi Ms. Morgan,
It looks like skeletal tissue by the biopsy and aspirate (they do both), so that means NO MALIGNANCY. I have attached the reports. The lumbar puncture was also negative. I say we repeat the PET/CT within 3-4 months of the last one and continue to follow it very closely.
I am also going to have my heme pathologists take a look at the slides later this week, but I doubt they will change the diagnosis. I will keep you in the loop of course!”
*So there you have it! No chemo no radiation no anything! I also asked about any evidence of autoimmune issues, she says that the findings could be or could not be suggestive of that, and that I need to take the reports to a rheumatologist to be sure. She also doesn’t think a full excisional biopsy will be necessary - however that is the purpose of having the “heme pathologists” check further to be sure.
yes yes yes yes yes! THANK YOU GOD. Merry Christmas to me. I think I need a christmas cookie making party set up immediately. Let’s celebrate!
29 11 / 2011
Yesterday was a very long day at Moffitt. Chris and I arrived at 11 am and walked through the handicapped door to the lab. I check in and the woman is very friendly. She puts my wristband on the best I’ve ever seen (to me, my wrist band being on correctly is important (too many years at Stickyj trying to measure and fit bracelets)? They bring me back and ask me if I have a power port in my chest. I’m not completely sure of what this means. I have a flashback to two days before when Chris handed a small port identification card to me and asked me to put it in my wallet…and I put it on my nightstand (where it still sits at this moment). When he had handed it to me I sort of blew it off - no one ever asks what type of port I have. Yesterday no less than four people asked.
On to fun news - the night before the procedure my friend Jasmine that lives in DC came to visit (sort of a surprise but I had already figured it out) along with Nina and Michelle. It was awesome to see them especially Jaz who I hadn’t seen in a couple of months. Right before they arrived Cole took his first steps, while Chris and I watched. I was so so happy that Chris got to see it! No reenactments necessary this time.
Back to Moffitt. After my lab work I walk out and Chris is nowhere to be found. An elderly couple and another man point down the hall and tell me “he packed up and headed that direction”. I walk down the hall to find him purchasing a throw over sweater because I had mentioned that I was cold. The ladies behind the register seemed to love him…and rightfully so.
We head upstairs to radiology and sit down in the waiting room. Then we are sent to the gold waiting room. They bring me back and I put on a gown. We run into one of the chemo nurses that we chatted with a few months back. He had transferred to a different department and it was nice to see a familiar face. He brought me a small gown to change into instead of the xxl one I was given at first (hard to keep the back from flying open when you don’t know which part of the fabric you are holding). I was grateful for that. We had about 4 nurses with us before surgery that were really awesome. We talked a lot about FSU. They started an IV and I had an almost constant blood pressure monitor on my arm. I am wheeled back to the procedure room. They transfer me to a ct scan machine. The core needle is guided by the scan continually - they would do some work - slide me in - slide me out - more needles, etc. I was given many localized numbing medications as well as Versed which made me a little loopy. They are entering from my hip (basically my left cheek - always wanted to use the “pain in the a** “joke). The first time they slid me in I heard a loud speaker above me yelling in German. I laid there confused wondering if the Versed was making me crazy. More German. Another loud intercom clicks on, “Oops” I hear with some laughter in the background…and then the scan begins. Later the nurse explains that right below “none” on the automated message switch is a “do not swallow” message option in German. Oops.
The doctor walks out to speak with Chris and let’s him know that what they were sampling didn’t appear to be a tumor - it looked more like inflammation. Good news to my ears! However - we will know for sure within a week.
After this I’m brought back to the recovery room. They wait for an open room for a “LP” or lumbar puncture. I’m awake for this also. They wheel me in and have me lay face down.The doctor is really nice and we end up talking while he does the procedure. I asked if we could leave all the weird syringes in my back and go take a walk around Moffitt to scare some people. He liked the idea. He pulls out 6 cc’s of spinal fluid and let’s me look at it in the vials. It’s clear and looks like water. I thought it was really cool to be able to look at my spinal fluid up close. He said that usually if there is an infection it will be cloudy so I look safe there. He says they will simply examine to look for any abnormal cells. This procedure was x-ray guided (I was laying under a huge x-ray machine) and the doctor took continual x-rays while guiding in the needles to be sure they were placed correctly to pull spinal fluid. As soon as this test is over they transfer me back to the wheelie stretcher. I am told to lay flat on my back for two hours, otherwise I could get a headache that would last for days and not respond to meds. Didn’t have to tell me twice.
The nurses were really sweet and snagged some snickers and twix bars for me (and for Chris) from the LP office candy bowl. Love them. I hadn’t eaten since 11 the night before and it was now 4:15 pm. Nothing like being poked with needles all day on an empty stomach. Then they excitedly bring me a meal of a turkey sandwich, chips, and raisins. I immediately feel nauseated because this was the meal they always brought during chemo but I was also too hungry to care and they were so sweet to save it for me. Chris had to feed me small bites while I was laying flat and feed me from a straw sideways. He said what I was thinking “you look like Cole right now”….just open the mouth and wait for food or drinks to magically enter. Chris starts up hulu and we watch “up all night,” a show that a few people have recommended. It was pretty funny. Afterwards we head to whole foods because I NEEDED a bag of organic carrots. My body was rejecting everything processed and feeling pretty awful. I love whole foods - it’s like a wonderland of healthy / green items. It makes me so happy to be in those beautiful aisles. I also recommend reading the “anti cancer diet”. Lauren Munoz allowed us to borrow her book and it’s really informative and based on scientific studies. I’d prefer that my friends read this BEFORE getting cancer, I wish I had.
I’ll have results within a week and will post then!
21 11 / 2011
So, I had a really long awesome post all typed up about 20 minutes ago - and then my computer died and I lost all of it. I am not surprised, actually. I was writing about God. About to hit send - computer dies. I start the computer back up, and it saved everything up until I began to talk about God. Interesting? Maybe good isn’t the only force in the world. If it was - I guess the whole world would probably be pink frilly and sickening. Way too many cookies.
Anyway - here’s the long story made short because I am not in the mood to re-type everything I just did.
1) Yesterday was the half marathon and it was INCREDIBLE! Thank you so much to everyone involved, I love each and every one of you and appreciate you so much. I am so flattered that you came out to support me and my team! Fun fact - my oncologist from Moffitt was also on my team for the half marathon and ran it on a hurt foot in a better time than me. My brother in law, Alex, also beat me on a sprained ankle - by more than an hour. I’ve heard rumors that the race was actually around 13.5 miles, not 13.1 (from some credible sources) so you all are REALLY rock stars. I had so much fun running/walking (when we saw cameras we would start running so we looked hardcore for photos)…another great moment was when Wes and Jeff decided that we should hold up our own team pace keeper sign, but instead of “1:30” on it or “2:15” it would simply say “Tomorrow”.
2) Went to see the surgeon today. He was great. His assistant did a leg strength test on me to see if this mass in my hip has affected anything. After yesterday I couldn’t even lift my leg, let alone keep it up with weight on it. The surgeon and I went through options, and suggested I at least try out the “core needle biopsy” to see if it finds something first. It’s much less invasive (no cutting through muscle, dodging sciatic nerves, and 5 inch scar down my hip). I guess it’s worth a shot - even though I don’t know what I’ll do or who I’ll take down if I hear the word “inconclusive” again. I was also relieved to hear that if it doesn’t work, the mass is still big enough that a core needle biopsy wont damage it so that the surgical (excisional) biopsy is inconclusive as well. I am scheduled for the core needle biopsy on Monday (a week from today) and they will be doing a lumbar puncture at the same time to remove some cerebrospinal fluid to be sure an infection isn’t causing the “Lhermitte’s sign”. My oncologist is pushing for a quick turnaround so hopefully we will have an answer soon! Chris went with me and got tea and water for me (I now have the horrible cold that Cole has) and was an amazing help and keeps my brain organized. We all know how much I love rambling.
3) While looking at the slides and scans of my insides, I couldn’t help but think “how could anyone deny the existence of God”? Our bodies are so intricate and incredible, and we are only beginning to truly understand it’s complex and perfect processes (even doctors have admitted this to me). I think we are doing ourselves a disservice in believing came into being via a combustion or random chance. I’ve heard that the chances of the complex humans as we are now coming into existence without being created by someone is comparable to taking a watch apart piece by piece and putting it into a box, shaking it around, and opening it to find it perfectly placed back together and ticking. Just something to think about, right? With all of the intelligence we have now, why can’t we create a life out of absolutely nothing? We can’t even recreate breast milk. We need the trees God made for paper. Seriously? Have you ever taken a step back and looked at your life. A time span of maybe 80-100 years if we are lucky. Were we put here to go to our jobs, chat with some people, drink some caramel frappuccinos, and then die, hopefully leaving the world a better place for the next generation that will do the same thing and come to the same sad end? Or were we created to live here, be watched, tested, and look forward to something past this life? To reunite with everyone we love that hopefully knows the truth? I find it extremely sad and hard to believe that this is it. We live, we die, the end. How pointless! Look at the world and how it works in PERFECT harmony. Perfect processes are everywhere. That not only are we here - but so are many other things that are made to sustain our bodies. Air, water, food (in many varieties that have nutrients and vitamins that are vital to our well being). Those all randomly showed up as well? Combusted and formed from cells that happened to keep us alive? What about a male and a female that can recreate children, and a mother than can sustain that child on her own? The fact that once the child is born, the body recognizes this and starts to make the perfect food for it is amazing. If we evolved from something, obviously there was a baby or infant form that needed to be cared for by SOMETHING to survive, how would that pan out for existence? The whole world screams “God made me” not “hey I got here by accident when some cells that came out of nowhere combusted”. If you threw paint on a canvas randomly - what are the odds that it would come out as perfection? A masterpiece? If you think those odds are low - think about the world around you. We struggle even to recreate the real thing on paper on purpose. More to come on this when I feel riled up again. :)
Love you all, goodnight!
17 11 / 2011
Hello everyone! So if you remember, I had said that a biopsy was scheduled for Monday morning of this week. They decided to cancel last minute in favor of a more invasive surgery, since the Sarcoma surgeon decided he would be able to get the mass out of my hip muscle (it is pretty deep in there). I now have an appointment this upcoming Monday to meet with the surgeon and discuss the surgery, then schedule it to take over in the following week. He only operates on Tuesdays and Thursdays, so this would mean the next day after the appointment or on Thanksgiving. Possibly the next Tuesday but I don’t want to wait any longer than that. What better way is there to celebrate Thanksgiving than being carved up like a Turkey?
Today I met with a Neuro Oncologist (Neurologist specializing in the Oncological sector of this field). I ran late to this appointment because hurricane force winds and rain torrents showed up as I was about to exit the interstate, causing traffic jams. I brought Cole with me and he was very upset the whole time. He is usually such a good baby but there’s something about doctors’ offices that he just doesn’t like. As soon as I stepped on the scale to be weighed he started shrieking. I looked at the screen, told him I feel the same way, and stepped off the scale. We met two women nurses that work under the doctor. They were very sweet and understanding. One played with Cole while the other ran many tests on me that were somewhat like sobriety tests when you get pulled over (not that I would know what these look like). Seriously though, I haven’t been pulled over for drunk driving or anything - don’t worry. The doctor comes in and tells me this strange thing I’ve been dealing with (looking down and body going numb) is called “Lhermitte’s sign”. I am so excited there is a name for it!! I thought that maybe I was just going crazy or this was going to be another one of those “well that’s strange, don’t know what it could be, I’ll run some more tests”…If you notice by clicking on the link, it says that radiation myelopathy can cause this sign or phenomenon. The neurologist follows this up by saying that it could also be lymphoma that has spread to my spinal column, and it can also be a few other things. He wants to do a spinal tap (just like the one I had for my c-section). They would need a sample of spinal fluid to be able to check for lymphoma and rule it out. I’m pretty sure the next time I sneeze they’ll want a sample of my nose to test it for lymphoma.
Cole is really sick right now with a horrible smokers cough (trying to get him to lay off the cigs) so please pray that he feels better soon. It’s heart breaking to hear him.
Next up is the appointment Monday - so I’ll write the date of the biopsy then! Thanks for checking in :)
14 11 / 2011
I received a follow up e-mail from my Oncologist this morning. She says there is a small nodule corresponding to the hot spot on the PET scan. It could possibly be caused by a trauma to the area which caused scarring in the muscle fibers. The only way to know what it is for certain is a biopsy. My radiation oncologist agrees with her original thought that the non-excisional (core needle) biopsy may end up inconclusive. She has sent a message to the “sarcoma” team requesting that they review my MRI and let her know if they can remove it surgically. She also sent me the actual MRI report linked in an email, because she knows we are nosy and want to research to figure out what all of the doctor speak means. So, on Wednesday morning I’ll either be in a procedure or I’ll be meeting with a surgeon - prayers are requested, as usual. :) If this is clear, I get to have the port taken out of my chest next! I was talking with Carolyn the other night and told her that they might be able to take the port out right before Christmas if this all turns out ok. She responded with, “so you’ll be deported for Christmas? Wait…that wasn’t right…but I like it” …she is great.
Also, some friends and family are hesitant to talk about it around me or think that I am very upset about this. I’m sorry if I gave anyone this impression. I do not mind talking about it at all! I think all of this medical stuff is extremely interesting - I just tend not to talk about it in crowds because it’s either boring or a downer. Please don’t think you’ll offend me by bringing it up! Also - I am not upset about it at all. I was actually starting to miss all of my friends at Moffitt. :)
Thanks everyone for checking in!
12 11 / 2011
Well hello everyone. Since the medical saga continues - the blog will continue. I thought I had reached my quota of strange medical issues for the year - but as always, God’s schedule doesn’t seem to sync with mine. As my first post in the blog said “everything up to this point” … I am going to have to be unoriginal and use the same line again. Since I am very tired - this probably won’t be the usual, fun, light hearted post. Just relaying facts. Hopefully next time I’ll be more awake.
So, here’s everything that has happened up to this point, since my last radiation treatment.
I have decided to re-vamp my tumblr blog colors - I figure it’s been a while, let’s start new right? You guys have to be bored of the blue.
A while after the last treatment (actually while we were in Italy celebrating the end of strange illnesses to give a time frame) I began to feel strange sensations in my arms, back, etc. and they were extremely extremely sensitive to the touch. To the point that I didn’t like to be brushed up against. A light poke felt like a hammer. Soon after, my hands began to hurt. It felt like arthritis (or what I would assume arthritis would feel like). This happened while the sensitivity continued. I could barely turn my steering wheel. I decided to call up that same original doctor I had visited and referenced in my first ever blog post (the one that said I had one of three things..) He thought it might be a side effect from ABVD chemotherapy (V stands for vinblastine, a drug that can cause nerve damage). I thought that sounded annoying, yet likely. I called Moffitt to tell them about it, and they said it wouldn’t usually happen that far after chemo. Strange. So, what was it? My doctor ran a series of blood tests. First of all, my white blood cell counts were below the normal range (not that strange within one year of chemo). One test came back positive, called an “ANA titer” test, which can suggest an auto immune disease. It was only slightly positive, and apparently 25% of the population will have this test come back positive without having Lupus or any other autoimmune disease during their lifetime. He refers me to a rheumatologist. She is nice, checks me over, and says to play it safe she wants to run some tests. She says “I am expecting them all to come back negative, but you never know”. I test positive for a Lupus anticoagulant and DRVVT ( Dilute Russell Viper Venom Test, cool right?) Yet again, this test is deemed “inconclusive”. By this point I feel as though my life in general is usually inconclusive. Lupus is a very tough disease to diagnose (it can take up to two years and you have to have a certain number of symptoms to “qualify”). I meet the doctor and she says we will meet again in a few months and re-test to see if the findings of the tests are still active. Lupus can come and go, sometimes not showing itself for years until you have a “flare up” or it can be an every day extremely debilitating issue. So on this one for now - we’re just playing it by ear.
After this - I experience some fun new symptoms. I can cause the bottom half of my body to fall asleep/tingle on command by looking down. When I pick Cole up off of the floor or out of the car I get an intense fatigue/pain in my hips and upper thighs that will not go away until I sit down. Once I sit - it goes away within seconds. A couple of days ago I went rock climbing and never felt a thing. I’m a walking anomaly.
I call my oncologist and ask for an early meeting. We had a meet up and PET scan scheduled for December (as the first check to see if cancer has returned). When I meet with her she says she would like to schedule a PET sooner - as well as perform an MRI of my brain and entire spine to check for pinched nerves as a cause of the tingling/numbness when I look down. She says she assumes it is damage to the lower spine, which would be the area responsible for feeling within the legs.
We meet again. The MRI is completely clean, no pinched nerves or anything. She is still going to send me to a neurologist to run some nerve tests with him (this meeting will take place in a week or so). The PET however, is not as clean as we had hoped. If you remember in an earlier post, I mentioned a spot that faintly lit up in my hip. We had all written it off as a bruise, but this time it was more than twice as bright on the scan than it was on the last test. My doctor says it is unlikely that it is Lymphoma (although still possible) and could also be an auto immune phenomenon. She says the latter seems more plausible. She also mentions that there are many more things that it could be, and only a biopsy will help. She wants to run another MRI on my left hip to see if this lit up area is a mass that can be removed or not. If it is - it will be a major surgery (but the sample will be more accurate) and if it is not a visible tumor they will simply knock me out and stick a large hollow needle into the area to take a sample. This can cause some crushed artifact and it may be harder to truly identify the cells that they’re looking at. The biopsy can actually tell them if it is in fact autoimmune, lymphoma, or something else. Thank you modern technology. Incredible. During this meet up Cole decides to reach his hand into a tupperware of pasta and take out a handful and shove it in his mouth, spilling it on the floor. Then he cries for the next hour.
Yesterday I ran after the doctors appointment to the other Moffitt for a last second MRI. usually I know that they will be putting me in a gown and helping me tie the back, so I come prepared. Today I had leopard print underwear and some loud halloween socks on. I’m sure the nurse enjoyed that. They start up an IV in my left arm. They wrap it and tell me not to bend it. They then bring me some forms to fill out. This ends up being an interesting experience as I am left handed and short, so I end up having to fill out the papers on my tip toes with my arms straight. They take me back to the MRI room. The technician looked at me like I was crazy for coming back for more. We had JUST missed the hip area in the MRI the day before by going to the bottom of the spine - so we had to go again just a bit farther. This MRI is better than the last one. In the first one, they have a plastic cage over my head and a big mat strapped to my chest. There are loud banging noises, and I am pushed into a small tube. I hold an “emergency bulb” that I can squeeze. I don’t know what else to do, so I listen to the banging noises and find a pattern. Six knocks, seven bangs, seven knocks, seven bangs, six knocks, seven bangs, etc. I realize that doing this for an hour and a half might make me crazy, so I start to sing christmas carols in my head. This made me so much happier and excited for Christmas, my second favorite holiday. After this first scan a nurse tells me she will lead me back to the dressing room. She gets lost and I help her find the way back - this is my area of expertise because we end up by the radiation rooms). I bring her in and the other nurse asks if they can hire me to give tours of the new facility. This made me proud. :)
In the second MRI (only hip) I still have a mat strapped to my chest (reminds me for the infant sushi roll costume that I thought about forcing on Cole this year). This one doesn’t roll me all the way in, and I get to wear head phones and listen to Adele since they’re not scanning my brain, instead of having ear plugs in my ears (MRI’s are notoriously very loud). I accidentally forgot to take my ring off (no metal can be worn in an MRI) and it begins rattling and shaking on my hand - crazy sensation). After this Chris takes me to international mall (sweet of him because he hates malls) and then we get home and collapse on the couch with Harry Potter and the Deathly Hallows : Part 2. This was a nice end to the day. Go Harry.
I will be getting a call from my oncologist on Monday to let me know what type of Biopsy I’ll be doing, so there will probably be another post that day. Now we wait. My doctor should have the results of the MRI on Monday, and then we will know how serious the biopsy coming up this Wednesday will be! Thanks for tuning in, once again. :) Join us at the same time next week.
03 8 / 2011
Yesterday was my last day of radiation! It was great. The rush that ran through my body when they unlocked my mask from the radiation table for the last time was indescribable. I have had an unbearable sore throat for the last few days because of the radiation (unable to eat or drink without severe pain) so that made this final day even better. There was only one downside to finishing radiation…I am really going to miss everyone there. After going every single day you begin to make friends in every department - and by the end you’re on a first name basis with all of the nurses and technicians and even know a bit about their kids, nieces, pet birds that they like to take showers with, etc. They have also all seen you at your worst (partially nude and bald with a netted mask smushed on to your entire upper body). Chris and I brought in some pastries on the last day and it seemed to lighten everyone’s mood. Juliet went to a few of my radiation appointments with me or watched Cole while I went -thank you Juliet you made the last few treatments so much better! I have now decided I am going out on the town without a wig. My hair has grown back a bit - I like to think it looks somewhat like Emma Watson’s (hermione granger)’s recent super short hair cut. I am tired of wigs. They’re too hot and too fake. This last Sunday was Chris’ and my second anniversary. We stayed for a night in Anna Maria island and it was perfect. Loved our hotel, and it was right next to “The Beach House” restaurant where we ate dinner on our last anniversary. The weather was perfect and the water was turquoise and warm. Our hotel was unable to let us check in early - so we left all of our things in the car and headed to the beach. When we got everything upstairs later that night, I realized that my wig (the only one I brought) had melted in the car (it was synthetic so this can happen). I cried a little because my fake hair was like my safety net, or a wall I could hide behind. I am proud of myself though - I got ready and went out with my crazy hermione granger hair. No one even seemed to notice anything strange. Wesley suggested I just act like a European model who chose the haircut. Hmm…I am 5’3, I don’t think I’m fooling anyone.
Now that treatment is done the worst is over - now I will just need to have my port flushed (very painful - huge thumbtack pricks on each side of the port) every six weeks and I’ll have scans every three months (the radioactive kind) to be sure the cancer hasn’t returned. After two years the odds of the cancer coming back are very low- so at that point there are fewer scans and checks. I also get to try to have more kids at that point (they want us to wait at least two years so that there is not much risk if having to do chemo during pregnancy - wheeew).
Thanks to all of my amazing friends - you all have been so sweet and supportive. I wish I could thank everyone individually on here but it would be virtually impossible - we have been so blessed with wonderful friends. Chris and I were talking last night about some of the pros and cons of going through this experience. I noted that I would do it all over again. I wouldn’t trade any of my experiences, realization about true friendships, or conversations that came about because of it. I know with complete certainty that God used this to better me, not to hurt me. It was easily one of the best experiences of my life. Thank you for reading my blog and being a part of it.
20 7 / 2011
A week ago I went back up to the USF Moffitt to have heart and lung function tests done (similar to the ones done before treatment - compared to originals to see if the chemo has damaged my organs at all). The lung function test was about the same (locked in a glass phonebooth…panting into tubes)…the heart function test was a little different though. This time, instead of an ECHO (which I thought I was having) this test is called a MUGA. They start an IV and draw some blood from you, mix the blood they’ve drawn with a radioactive marker, and then infuse the blood back into your body to watch as it moves through the heart. Once again I was radioactive and was unable to go near Cole for 24 hours. It’s nice that he is so young while I am going through this so that he has no idea what is going on, but it’s also frustrating because I can’t tell him why I’m not going near him while we’re both in the same house.
This past weekend Chris, Cole and I went down to Boca to visit the Munoz family and go see the premier of Harry Potter 7. It was a great movie, and we all wanted to see it again immediately after. I loved spending time with them. They have a 3 year old daughter named Ella, and a 4.5 month old baby girl named Sloan. They’re such awesome kids. Ella asked me why I don’t have any hair. Knowing that she is in love with the movie “tangled” which is about Rapunzel, I told her that it my hair was magical and used to glow and that strangers came and cut it off to steal it. Needless to say she has a healthy fear of strangers now. Her little sister, Sloan, is a beautiful baby girl who has a wonderful disposition. She is always smiling and happy.
Today I went to “Moffitt South”, also known as “Moffitt International Plaza”. I walked through the sliding glass doors to a relatively quiet room filled mostly with employees. (This is such a great change from Moffitt north, which is always very busy and overwhelming - which means longer wait times). I learned how to use the touch screen check in. I put my hand on the scanner and it immediately brought up all of my information and appointment times. I verified everything and was immediately escorted upstairs to a waiting room. About a minute later I was called back to begin radiation. I was slightly nervous about it - but not too much. The girl met me by the changing rooms and lockers. (They give you a locker to place all of your belongings in after you change into a beautiful blue gown). They lead me back and I am greeted by four technicians that will be operating my radiation machine. One of them tells me that his son saw my mask and asked if it was spider man. They pull out my torso mold (now it’s a party, the photo was posted in my last entry) and ask me to lay down on the table. They pull the gown off of my shoulders and place the mask over me. I hear some loud snaps and then realize I’m completely immobile. They pull something out and say that they need to make marks and measurements on my mask. They take more pictures. I hear two of the technicians talking over my body - only numbers. “Nine…six…six…” My feet are again flat on something that I am pulling up tightly in both hands. They tell me that they are first getting x rays to be sure I am positioned correctly. I lay there. The room is quiet for a while, then it goes dark, I hear mechanical noises. The lights come on, and the technician comes out. She says the doctor needs to review all scans and placements and then we can begin the actual treatment. I wait another five minutes. They tell me over a loud intercom that treatment will begin. The machine moves and revolves. I hear a beeping noise, which means they’re radiating. I try to stay perfectly still. This is the only part that made me nervous, because I realized that if I moved at all they could be radiating other areas. The beeping ends and the technicians come out and unsnap me. That wasn’t so bad. I walk out and run into a large group of people in dressy business outfits that are obviously on a tour and have to squeeze through all of them. I go to the bathroom and realize that I have marks all over my face from the mask pushing on so tightly, now I look like spider man. I change back into my clothes and a woman escorts me up to see my oncologist. I meet with a nurse who tells me all about his love for diet mountain dew. I ask him why I have to see the doctor today. He says it’s probably a typical thing - just checking in to see how today went. I say OK. A moment later the doctor and two other people in white coats walk in. He says he heard that I “didn’t want to see him today”. Nice, thanks nurse! He tells me that the scan went very well. One of the main concerns of radiation is secondary cancers caused by contact with other non-cancerous tissues. He tells me that they’re happy if they can get the amount of excess exposure down to 10%. He says that they managed to get mine all the way down to 4% which is not common, which only further reduces my risk of future breast cancer. Thank you God! I ask how they can perfectly pinpoint the cancer spots to radiate while I’m breathing, since it causes movement. He tells me that during the set-up process they actually watch my breathing patterns and are able to cover the area of movement while radiating. I thought that was a pretty cool fact. He asks if there is anything that they can get for me. That’s a strange question, usually it’s “is there anything we can DO for you”. I think for a moment, and say “maybe a mansion and a couple of horses”. He smiles really big and says “horses! you like horses? I used to have horses” and begins to tell me about his equestrian days. I was not expecting that. If you met my doctor, you probably wouldn’t either. I say “sure, I wouldn’t mind a couple of horses”.
I head to check out and the girl at the desk looks at my name on the screen and excitedly asks if I am a Mets fan. I smile and say “no, my parents found my name on movie credits”. She looks slightly disappointed, and says that she is a Mets fan. I have to go back for radiation for two weeks - and then I am done! (although I have to go back for scans and “port flushes” since I can’t take get this crazy device out of my chest for a little while (maybe 4-6 months with clean scans and I will be allowed to…just another surgery…what the heck)).
I left Moffitt and thought to myself - “wow, that wasn’t bad at all”. The doctor had told me that possible side effects of radiation are sunburn, fatigue, and a sore throat. Well then, all I will need are aloe, starbucks, and some cough drops. Easy.
13 7 / 2011
A few days ago, I received a call from my radiation oncologist’s office asking if I would like to do my “SIM” and radiation plan at the new Moffitt facility that is right next to international mall. It opened about 2 weeks ago, and is a state of the art new facility. Uh, YEAH. No more 45 minute drive to the USF Moffitt, only have to drive 20-25 minutes, and it’s NEXT TO INTERNATIONAL MALL. Perfect. Today Chris and I show up at 10 am. They have a whole new check in system. They put my name in and have us sit in a waiting room. There is a flat screen with the first three letters of your last name, and when they’re ready for you a desk number pops up. Chris thinks it looks like the flight time screens at the airport. I agree. I ask when my flight is. I walk over to desk #1 and chat with the receptionist. She asks me to place my palm over a small black device. It scans my palm, which is how they’ll check me in now for every visit. (Apparently your “palm vein print” is just as unique as a finger print). She then wraps a tracking device around my wrist, so that they know exactly where I am within the facility at all times. (A doctor can simply look at a computer screen and see exactly which patients are in their waiting room or elsewhere, so cool, and privacy violating…”Oh looks like Shea Morgan is in the bathroom…I’ll call her back in a minute…”) Chris says that he wants to bring a hamster in next time and give him some caffeine and then attach my tracking device to it and set it loose in the building, maybe duct work. This made me laugh for a while - and I kept laughing throughout the day as I thought about how hilarious it would be to watch the Moffitt employees reactions to my beacon running all over Moffitt through walls. “The computer says that Shea Morgan is inside our air conditioning unit in the basement, can you explain this”? We tell our oncologist our plan, and he thinks it would be funny. He’s a good sport, most people would find our scenarios a little scary. The last scenario we came up with after sitting far too long in a waiting room with nothing to do was to paint a dragon on the wall and name it Cancer. Don’t ask. We seriously would have had plenty of time to do it though. I’m glad I have such an awesome friend to sit there with me, thanks Chris. This would be so much harder without you.
They get my IV started. The nurse tells Chris he has to take me to the mall after this. He looks a little sick. Then they make me undress from the waist up and put a gown on backwards. They take me back to a room with a machine that looks remarkably similar to all of the other scanner machines I’ve been so privileged to lay on. They ask me to lay on my back and turn my head to the side. They pull my gown down to my stomach (they need a FULL bust mold, luckily it was just two girls in the room) and put a warm wet gooey netted plastic sheet over my body, and mold it to fit to my body perfectly, while my head is turned awkwardly to the side. It squashes my nostril in on one side which makes breathing awkward, and I can only imagine how attractive I looked. They lock the net on to the table I’m laying on so that it will dry and be able to hold me to the table in the same position next time. They hand me two “jump ropes” to hold in each hand that braces something to my feet. They put me in to the scanner and inject that contrast dye again that makes you feel very warm (like you’re peeing yourself) and it tastes like I am licking a door knob. (Not that I would know what that tastes like…)
No panic this time like the PET scan - even though I am wearing only a wet net on my torso and can’t breathe out of one side of my nose or open my eyes. At least I knew I couldn’t screw anything up. Hard to do when you can’t move, talk, or blink, but if anyone could manage — it’s me. The scan finishes and the technician takes pictures of me from all angles. (Keep in mind I have ONLY a plastic net over my upper body). I wonder to myself if they’re going to submit it to radiation patients gone wild. Strange to think people have pictures of you like that. She shows me the photos she has taken later, and I realize they had put a blanket over my chest, I just couldn’t see or feel it when they did it. Thank goodness. Here is a photo of my finished mask sitting on top of the scanner machine, I told the nurse when this is over I’m going to take it home and decorate it. I ask if I can see the pictures she had taken. From far away in one of her photos it looks just like I’m in a morgue with a sheet over my body, (because they cover the rest of my body that is not covered by the mask with a blanket). Freaky. I ask her if she enjoys working in a morgue. She laughs.
If you look closely, the small piece of tape with writing to the left may at first glance look like it says “death” but in fact says “depth”. My mistake, my mind was on morgues. After this they release me and I am calm. I change and meet Chris in the waiting room. The nurse comes out with my radiation schedule. I start next Wednesday July 20th, and will be going every day for two weeks, and I am off on weekends. It’s so nice that I only have to travel 25 minutes instead of 45! After that we head out to international mall for lunch, because I have a nice husband. What a happy ending. :)
Thank you, mom, for watching Cole and cleaning!!
29 6 / 2011
Today was another full day at the lovely Moffit Cancer Center. Woke up at 5:30 am to be able to get there nice and early to fix my messed up schedule (I do now have radioactive superpowers but I can’t be in two places at once). We got that sorted out, and had a little extra time to run to Panera and grab breakfast. I was extremely excited about this, because I had a dream about the frozen caramel coffee drink they have and thought about it all morning, but didn’t think I’d be able to go. That made it that much more delicious.
I return for my 9:30 am appointment to have the MRI done of my hip, to double check on the spot that “lit up”. Spoiler alert: to anyone who is soon having or ever plans to have an MRI you may not want to read this, I might unintentionally scare you with my descriptions. I tend to have an overactive imagination.
They take me back and access my port. They flush it (horrible taste in the mouth but I was prepared with some very strong gum this time)…
Shea - 1, Evil port flush substance - 0.
Before I can get the words out they stick the horrible tape on the port that always tears my top layer of skin off. You probably didn’t need to know that part.
A woman with no sense of humor leads me back to the MRI room. Either she has no sense of humor, or I have no sense of humor. I like to think it’s her.
They ask me to remove all jewelry and my shoes and lay on a thin table. They ask me if I am claustrophobic, and if I have ever had an MRI. No, and no. However, I have had many scans and did pretty well so I am not concerned. They ask me what type of music I would like to listen to. I choose classical. (Pops are you proud? I think it’s all of the days when I had no choice but to listen to NPR). I don’t know where that came from, I wouldn’t even say I like classical music all that much. Maybe I thought it would be soothing, or that they would approve. He tells me I am the second person by 9:30 am to choose classical. I wonder if they panicked and chose classical too.
They access the port and then he brings out the strange colored gauzy stuff (the type they wrap around your arm after you donate blood) and asks me if I am allergic to it. I say no. They start to bind my feet with it just beneath my toes (This is getting a little weird…) They put a blanket between my legs so my knees can’t touch. They cross my hands over my chest, over a small bulb that I am supposed to squeeze if I need the scan to stop for any reason. They put my headphones on with loud classical music, and continue to talk to me. I stare at them blankly because I can’t hear them and I am not allowed to move my hands (I tried to but was told to stay still…I think…) I have plastic tubes all over me and I have no idea what any of them are connected to. They scoot me into the little cylinder and I glance up to read a sign that says not to look into the laser, it may cause blindness. This sign is right next to the laser…
I lay there for a while trying to figure out what the machine sounds like. Then it hits me - it is exactly like being trapped inside of a copying machine that is buried under a construction site. This is too much like being buried alive, with my feet bound and a blanket over me with my hands crossed over my chest holding an emergency bulb. I start to panic slightly, then try to think about other things to occupy my mind. I only had 4 hours of sleep the night before, so at some point I drift off. I wake up in shock to a loud beeping buzzer noise going off and I panic because I assume I squeezed the emergency bulb in my sleep (I tend to jerk around a lot). I try to listen over the classical music. Nothing. I realize this is a sound the machine normally makes. I wish I would have told them I was claustrophobic and taken the sedative. Honestly, to any normal person this scan wouldn’t be that bad. As I said earlier, I have a very active imagination, and the people at Moffitt really are caring and wonderful.
After this scan we have an hour break. We find the “art therapy” room and paint some water colors. I see this on a magnetic table where you can mix and match words, and find it inspiring:
Chris paints my name and it ends up blurring together and turning grey. He names it “Shea in a storm”. Fitting. I painted a safari scene…
Chris and I head up to the infusion center, for the last time (God willing). We check in. I am called back to do vitals. I weigh close to what I did in high school, and this makes my day. I tell all of the nurses my good news. They were happy for me, but slightly concerned because of the weight loss. I go back to the waiting room, with my buzzer. We run down to the cafeteria and grab lunch while they get my chemo ready. (Chris now pronounces it “chemeaux” instead of “chemo” to make it sound classy or desirable, love him). We are called back and they sit me in the exact same chair as last time (keep in mind this place is BIG). The nurse that was with me on my first day of chemo was my nurse again for my last day. She is really sweet. Everything goes very well. We meet a couple of people, chat it up, the usual. One man is at Moffitt for masses in his lung from smoking, and is trying to see if chemo will work before they remove another part of his lungs. I remember my original oncologist being unable to answer specifics about my cancer, and he followed his lack of knowledge with the fact that my cancer is pretty rare. He then said “lung cancer, for example, I have a new patient at least once a week. Don’t smoke”.
I watch the minutes tick down on my monitor, and feel building anxiety (felt anxious since I was about 10 minutes away from Moffitt in the morning…anticipatory nausea). Chris and I plan our anniversary weekend and book a hotel (per his suggestion, he is great at figuring out how to take my mind off of things…usually he asks me what I think Tessa (our dog) is doing right now. That makes me laugh and think of how ridiculous the question is…and it works)! I finally finish, they unhook me, I hug and say goodbye to all of the nurses and schedulers that I have met and love.
We drive home to relieve Chris’ mom who watched Cole all day for us, and did laundry and brought gifts on top of that. She is absolutely wonderful. Thanks also to my dad who came at 6:30 am until 7 so we could run out to Moffitt early. Thanks to my mom too who has been great about taking Cole so I can get things done (she cleans too…I am spoiled).
Updates in our lives:
Cole is trying so hard to crawl. He gets on his hands and knees and rocks back and forth, but still tends to rely on the “army crawl/scoot” across the floor. He is such a beautiful little light in all of this. I come home to Cole, who knows nothing about Cancer or evil things in the world. He only knows love and hugs and laughter. He makes me smile and reminds me that there are still such beautiful things in this life that are SO worth living for. He also reminds me that chemo is still better than pooping your pants.
I am going wedding dress shopping with Alex’s fiancee Jovanna tomorrow, and I am a little too excited about it. I love this type of thing.
My wonderful friend Carolyn (who I have been friends with since 6th or 7th grade) is in India on a mission trip working in the red light district. She has a beautiful blog, if anyone would like to read it! www.carolinajune.blogspot.com … it’s an eye opener.
A few things I have learned/found valuable (mostly about child raising) over the last few days that I would like to share with you:
Don’t feed your baby “vegetable beef puree,” they’ll hate you. Don’t assume your baby’s diaper is clean, ever. Raising a child is about the art of distraction, given the right tools you can stop a child from crying. Don’t feed your child and then put them in a bouncer. While feeding a baby in a highchair, don’t put baby food on a spoon and then look the other direction. Sippy cups are weapons. No matter how desperate you are, don’t hand your baby an iphone. Don’t take diaper off baby until they’re almost in the bath water, your walls will thank you. Don’t get an MRI. Don’t wear an FSU shirt to Moffitt. Don’t get cancer, it’s inconvenient.
Just some things I have found valuable.
As usual though and on a more serious note, I see how God is using this in our lives, and it is a beautiful thing. Everything He does amazes me, because He makes our lives perfect in ways we couldn’t have achieved. We can’t see the full scope of our decisions. Once you give control of your life and choices over to him, you can sit back and watch a beautiful masterpiece create itself.
“…pursue righteousness, godliness, faith, love, perseverance and gentleness. Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made the good confession in the presence of many witnesses. In the sight of God, who gives life to everything, and of Christ Jesus, who while testifying before Pontius Pilate made the good confession, I charge you to keep this command without spot or blame until the appearing of our Lord Jesus Christ, which God will bring about in his own time—God, the blessed and only Ruler, the King of kings and Lord of lords, who alone is immortal and who lives in unapproachable light, whom no one has seen or can see. To him be honor and might forever. Amen.”
1 Timothy 6:12-16
27 6 / 2011
25 6 / 2011
Yesterday was the big day! Headed to Moffitt at 7 am, and was scheduled for the PET scan at 8 am. A nurse came back to get me pretty quickly and Chris staying in the waiting room to read. She lead me back to a small room with lots of needles. Sat me in the chair, dropped the little bar down in front of me (my first thought is “what are those there for? do they think I’ll try to run for it? Not a bad idea”…) then she started up an IV. She was really sweet. Her nurse friend came in a few seconds later and told me she didn’t like my shirt. (Had a FSU shirt on and apparently she likes the Gators, at least I hope that was it, otherwise she just really didn’t like my shirt). My nurse injects something in to “flush” the tubing that stings my nose and makes me taste salty alcohol in my mouth. Then she injects the “dye/sugar mix” into me and the clock starts ticking. I have to wait in a chair for 90 minutes until it has worked it’s magic. On the way to the chair I apprehensively ask if they are going to make me watch a video about birds mating. She looked at me like I was crazy, then laughed and said “well, we have magazines, where did you go for your first scan”!? I sit in the chair and she brings me a warm blanket. I fell asleep in the recliner, as did five other patients in chairs around me. I had to be careful not to move, if you strain your muscles too much they’ll eat the sugar that the cancer cells are supposed to eat so that the test shows it properly. A nurse comes back to get me and takes me to a room with the huge PET scanner machine. One wall is completely glass, and I can see computers and technicians working on them with doctors in white coats staring stiffly over their shoulders with hands clasped behind their backs. “This is classic” was my first thought, then it made me nervous because I realized they may be looking at my insides in real time while I was laying there, and I felt a bit like the dead animals I dissected in high school. For whatever reason it was also slightly comforting. Maybe that was because I knew they were going to have an answer for me soon. The technician has me lay on the table, puts a blanket over me, and tells me to stay perfectly still and breathe normally, it will only take 20 minutes. This is half the time that it took the first place to do it. She tells me they have state of the art machines, and they work very quickly. Comforting. I lay there while the revolving funnel scans up and down. I can hear little mechanical whooshing noises, and my body jerks as the machine scoots over me to scan different parts. The technician comes back, takes off the blanket, and tells me she doesn’t like my shirt. Lovely, looks like we’re in Gator country. I tell her she isn’t the first, and walk back to find Chris. We head out into Tampa to explore, because it will be a few hours until my next appointment. We try to decide what to do, and end up getting food at Panera and terrorizing Target. We play with bouncy balls and have a sword fight in the children’s pool section, and then try on all of their hats. We buy a couple of soft pretzels and head out. I walk into the lab section, and they check me in. We sit in the waiting room and observe an adorable 1 year old boy, who is flirting with all of the girls in the room. I couldn’t believe Cole would be like that in just 4 months. He tried to share his truck with everyone and gave coy smirks to anyone that would look at him long enough. They call me back. My numbing cream has worn off, so I can feel everything the nurse is doing. Big needle/thumb tack into the chest to access the port under my skin. My port used to sit horizontally and now it sits vertically, thanks to little Cole bear’s curiosity and newfound ability to climb over me to get to our window blinds. They take all the blood they want (ports work two ways by the way, they can draw blood from them and also infuse chemo or whatever they want into them). The nurse I get for this blood draw is the same one I had last time, and she was in a much better mood this time. She pulls the thumb tack out of my chest and then comes at me with wads of gauze and says “wow, that is bleeding a lot”. I feel slightly faint and manage to stand up and walk out with gauze taped all over my chest.
I head out to the waiting room and find Chris, and we head off to the Hematology clinic to visit with my oncologist. We get to see my lab work results. They have standard “reference ranges” so you can tell if anything is too high or too low. My white blood cell counts are double what the highest end of the reference range is. I am a super infection fighting machine! The doctor comes in and sits down with some papers in her hand. She says “well I got your PET scan results back, and they look perfect. However…” (uh oh…) “you have a spot that lit up in the muscle by your left hip. It’s very unlikely that this is lymphoma, however we are going to need to do an MRI just to be sure it isn’t anything we need to treat”. She tells me it could be caused by infection, bruise, blood clot, basically anything. She doesn’t seem too concerned, just wanted to get it checked out. I am on cloud nine though, because she then shows us the actual PET scan and tells me she can’t see ANY TRACES of the cancer that they saw on the last scan. This means that ABVD worked on me, and now I am allowed to switch to radiation (yes!!! no side effects!!). I should be starting radiation within the next few weeks. In the mean time, I have to have ONE more Rituxan infusion on Wednesday (I am OK with this, I don’t tend to have side effects from it) an then the MRI will be done later that day. After this I meet with the radiation oncologist to plan my schedule! Thank you Lord, no more chemo. I have started to get “anticipatory nausea” whenever I am headed to Moffitt. About 20 minutes before I actually make myself sick because I don’t want to go back, even though I know they’re only helping me. Hopefully this will go away once I know I’m not going back to the infusion center!
24 6 / 2011
Just wanted to touch base with you awesome runners and walkers concerning the Women’s Half Marathon. Below is the link with a coupon code to save $10 off the registration. The fee does increase the closer we get to Nov. 20th, so if you haven’t registered yet, this is a great opportunity.
Be sure to register under the name “Team Shea”
- go to active.com (or just click below on “register now”)
- click on “register now”
- select “Team Member” Category
- Select team name (Team Shea) from the drop down list.
Please forward this to any of your friends who would like to participate. We’re going to have a blast!
If you have any questions, please feel free to email me or call @ 941-400-5958.
23 6 / 2011
Today is Chris’ birthday! I am so excited to celebrate with him! He is 27 now, and still the best husband and dad for Cole that I could have hoped for. Luckily I was able to trick him into thinking I was having coffee with Crystal and snuck into his office at work to decorate, and half of the decor was on the floor by this morning. Oh well. Thought that counts! Happy birthday, love of my life!
Tomorrow is the big day for me, PET scan (get to be radioactive for 24 hours again so I’ll be snuggling and kissing Cole all day until he can’t stand me anymore) and a visit with the doctor a couple of hours after the test to discuss the results. I am not worried. Thanks to everyone who has sent encouraging messages or texts about tomorrow, I love you guys!
By the way for anyone that has seen saving private Ryan - whew! Goriest movie ever, if Cole or Chris ever try to join the army I’m going to chain them to the bathtub for the rest of their lives. (I figure it’s humane because they can take baths and drink water, right)?
Will post results of the test tomorrow - PRAY!!!!!
Ps. I had been staring at the sky the other night for about 15 minutes, then thought to myself “I haven’t seen a shooting star in years” then asked God to see a shooting star and it immediately happened and it was the exact star that I was looking at. I think it was just his way of saying “I’m still listening”. :) This made me think of Melinda Aberman (I adore her), because she talks about a book she loves called “When God Winks” which I still really need to read.