Crystal Stites
Medical Update
TEESHIRTS: If you would like a Team Crystal Teeshirt, contact Whitney Breeding at: whitney.breeding@gmail.com
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http://www.aceweekly.com/coverstory070719.pdf
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June 24, 2010
February 10, 2010
January 22, 2010
December 10, 2009
December 7, 2009
June 26, 2009
July 23, 2008
April 30, 2008
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February 21, 2008
January 25,
2008
November 21,
2007
October 31, 2007
October 8, 2007
August 26
August 3
July 19
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March 7
March 6
March 2
February 22
February 13
February 6
June 24, 2010
Everything continues to be stable. At my second post-op appointment Dr. Ahmad told me that I could come back and monitor the tumor however i felt necessary. My condition seems to be stable most of the time. The only real problem I have ever had was this most recent episode. I have never been in pain from the tumor and i know that i need to go in immediately if abdominal pain begins. At this point I have not decided how i will continue my follow-up care. I may chose to only have blood work done this next year because of the large amount of scans that i have had this year. Every scan may tell me that i'm stable and nothing has grown, but it is radiation. If i have one or more scans every year, and these started in 2007, with a higher frequency than one a year i put myself in greater risk each year from the scans. So I think i may just have my C19-9 tested next year and then go from there. I'd also like to try to completely eliminate wheat and dairy from my diet for a year or so and see if it can make in difference in the size of tumor. The tumor is inflammation and wheat and dairy cause my body to become inflamed. It's just so hard though because i LOVE cheese and the dairy-free alternatives just don't cut it =( I've also heard a few other things that i may also try. I did the insane supplement regime before and it didn't make any difference, but i may try a few additional things as well.
I did get some really good news recently though! I have been accepted into DAAP at the University of Cincinnati. I will be stating school in the fall! I'm getting a degree in Interior Design. It is a five year program but i start working half the year as class credit (and get paid!) my third year. So I just have to make it through two years of working full time and going to school full time and then i will be a part-time student and working in my field for the last three years. I'm really excited!! This is what I gave everything in Lexington up for. This is my dream and goal and i went for it not even knowing if it would all come together or not and it IS!
February 10, 2010
My staples came out a few weeks ago and as of this past Monday I have no more restrictions and can start gradually adding in activity and exercise. At my follow-up appointment with Ahmad I found out that all the pathology from my tumor and spleen came back normal. I go back to work next week on Thursday, February 18. I have my next follow-up appointment with Ahmad on March 29.
Everything seems to be going well in the healing process. I'm feeling really good. Although I wish it was warm outside so I could go play since I have all this time off from work! I've been having some back pain the past week, and went to the chiropractor Monday for an adjustment. My back is getting better and I'll go back tomorrow for another adjustment. I think it's because I was sleeping on an air mattress in Lexington last week; and from being propped up for weeks after surgery, not being able to lay flat. I have got to go visit a bunch of friends since I have been feeling so good. Basically I went on a foodcation =D visiting friends and eating at places with awesome food all over Michigan and Lexington.
There really isn't much to add at this point. I'm not bleeding anymore, surgery was a success, no bad news, tumor is stable, i am getting disability pay, healing great, go back to work next week, and find out next month how often we will monitor the tumor this year.
Thanks everyone for all your love and support!
January 22, 2010
I'm a little behind on updates. It's been a crazy month. After i was released in December i packed, moved to a new apartment, painted the old apartment back to white, unpacked, did the holidays at home but with many out of town friends (and a little bit of family), had my 32nd birthday, and went back to the hospital Friday, January 8th for surgery. Because of all the things going on i did miss out on going to Michigan for my family's christmas and only made one holiday party. We did get a real christmas tree though, and even through all the chaos it did feel like christmas.
I was really scared going into surgery this time around. I did not want to wake up and find out they couldn't complete the surgery. I told Monica to tell them they were not allowed to wake me up until they did what they were supposed to do. No surgery for nothing this time around! I had my pre-op on January 7th. The anesthesiologist that day was called to the ER so i spent about 3 hours at my pre-op appointment, waiting for him most of it. He was supposed to run blood work for the epidural but only asked me questions. This ended up causing some problems the next morning at surgery. They can't do the epidural without my PT and some other test. They asked if they could do the epidural after surgery instead of before, however, i refused. I know what it felt like when i woke up in pain last time before they started the pain meds, and they want me to roll on my side after abdominal surgery--no way! So I made them run the blood work and wait for the results. I have to wait for them all the time and this time they were going to wait for me. Many of the doctors were not happy and kept asking me to go ahead, and i continued to refuse. They called Ahmad because they thought he would talk me into it, but he immediately agreed to wait and start surgery late. This is why HE is my doctor.
Surgery started about 30 minutes late, so around 8am. We arrived at the hospital at 5:30am. We being Dad, Slater, Monica, Tony, Rusty, Mom, and Charles. Surgery lasted about 3 hours. They ended up cutting me almost exactly the same as last time; across my belly and vertically. MY spleen was stuck to my stomach and that is why they had to make the vertical cut. The surgery was succesful. Dr. Ahmad told me afterwards that I really made him work, because all the verices it was very difficult. I did have to have blood transfusion during surgery, just one bag of blood this time though. Ahmad also said that the tumor looks exactly the same as last time, which is good news, and they went ahead and biopsied the tumor again since they were in there.
After surgery I was placed in ICU for a day. ICU is such a lonely place. They told everyone i would sleep all day and night, but i never do. I was awake the entire time all alone. They allow visiting hours but they are so limited. I got to see some people after surgery and then later that night i got to see Andy, Whitney, and Tony but only 2 at a time for 30 minutes total. They really should allow you to have visitors in ICU. Being alone after surgery is the worst and last time i never went in ICU so i thought i would have everyone with me that day and night and i didn't. The next afternoon I was moved to a room on the 9th floor. These are the good rooms-private, large, visitors allowed around the clock, furniture, large windows. I had a lot of visitors while I was in the hospital. They had me walk the day after my surgery but only a little outside my room and back. The next day I was doing laps, and by day 3 afterwards i was doing 6 laps a day or more. They left everything hooked up to me until Wednesday. On Tuesday, they took out the drain from the space where my spleen was. This was strange. They pulled out this tube and you could feel it weave through your gut. Wednesday they took out the epidural, then 6 hours later the cathedur and the iv morphine drip. I was finally able to take a real shower! Thursday I got to go home.
I've been well taken care of after surgery too. My dad stayed with me until Saturday. Monica stayed with me some. I stayed with my mom for a few days. I'm feeling really good. I have only taken one pain pill since i was released from the hospital. I did get sick for a day after i came home and had to have nausea pills prescribed to me after not being able to keep anything down for that day. However, my appetite came back a few days later in full force. I went from only being able to eat fruit, the only thing that tasted good, to never being able to eat enough! I'm getting around well, still can't stand straight, but getting there. I can lay on my side already, which last time this took months to be able to do comfortably.
I go back on Monday, January 25th to get my staples out. Slater is taking me. I also have a prescription for 4 weeks of physical therapy this time. Monica and I finally got them to agree to give it to me. I want my core strength back. Last time i ran and did yoga and tried on my own but it never came back. This time i want to make sure i know how to get back the strength to sit up and lift my legs off the floor. I have a chiropractor who plans to help me with physical therapy but my insurance doesn't cover chiropractics, so i kinda needed help from someone who insurance covers. I'm also going to get some traveling in while i'm off work since i never am able to do so otherwise because of my work schedule. I cashed out my retirement for this move, car repairs, loss of work, and surgery so i have a little cash left to make a trip to Lexington to visit my friends i miss there dearly and Monica and i are making a weekend trip up to Michigan to visit also.
i'm healing well. I feel pretty good. Things seem to be happening faster this time around. I'm not sure why. I do have a physical job now so maybe my body is stronger. I take my supplements more regulary and in higher quantities now. I also did a homeopathic regime before and immediately after surgery this time to promote the helaing of surgical wounds and for bruising and swelling. I took probiotics in the hospital which i could tell made a big difference in my gut and bowel starting to work properly again. I also have a detox that i started but i only did one day, the detox just wasn't as bad this time around, which i am extremely thankful for--that is the worst part of all of it. I'm taking special supplements to help the healing process also. I'm feeling confident that i'm going to be my complete self to be able to go back to work February 18th. Last time i was still exhausted after 5 weeks and not really ready to go back to work. This time i'll go back after 6 weeks and i believe i'll be 100%.
Thank you everyone for your well wishes, calls, cards, flowers, prayers, healing energy, texts, messages, etc.
December 10, 2009
I went to Dr. Ahmad yesterday to discuss my surgery. In order for them to remove my spleen they will have to cut me open again. Because of all the varices created from the tumor and the blood clot (they are pretty much everywhere!) they cannot do the splenectomy laparoscopically. These varices that my body has created to overcome all the obstacles has changed my anatomy; makes me a high risk patient for bleeding out (i may need more blood transfusions during and/or after surgery); and complicates any procedures done on me. The incision will be the same size as the last one, so pretty much all the way across my belly. They will use the same incision and go over top of the old one, removing scar tissue. This incision will be a little further over to the left though, and may not have to go over to the right as far as the last incision. My spleen is twice the size it should be because the build up of blood created from the tumor blocking the vein, the varices cannot handle the blood flow, the pressure building in these varices is bursting them causing the internal bleeding. Ahmad said adults do not really need there spleens, and there is an immunization if you have it removed. I already got mine in 2007, so that is one thing i don't need again for 2 more years. You have to get it every 5 years. This surgery will last 2-3 hours. I will be in the hospital for about 1 week. I will be out of work for at least 5 weeks. I will be able to collect 60% of what i make on disability pay. I do have insurance through Whole Foods and I will have my job after all of this.
I feel like I need to have my spleen removed to prevent future trips to the hospital from internal bleeding. I know it has happened before too. This summer i had a few days where i experienced the same symptoms with the black stool. However that time it resolved itself after a few days and i didn't really know what was happening that time. So, as unhappy as i am to have to voluntarily put myself back through the worst experience of my life, i feel it necessary.
They will not be doing anything with the tumor. If i ever have to go down that road again, it will be a really tough choice because we know the tumor is practically impossible to remove. So unless there are some new breakthroughs in technology it may never be possible. So, they will only remove the spleen.
Surgery will be scheduled for January 2010. As of right now we do not have a date. My guess is Ahmad's nurse will get back to me within the week to schedule it. She should be giving me the choice of a few dates-- i'm hoping they don't all fall before my birthday. My birthday wish is not to be in the hospital, even if your 32nd birthday isn't a "big one" i'd rather be smiling and having fun than dealing with cold sweats and breathing machines and oxygen tanks and a liquid diet.
December 7, 2009
On Wednesday, December 2, 2009, I finally broke down and went to the ER because something was obviously not right. The Sunday before I had started to feel light headed with any assertion. I had the day off and nothing to do so i ended up laying around all day and it did not seem like much of a big deal. Monday as I was getting ready for work I was extremely short of breath from just showering and and getting dressed and the lightheadedness was really bad--off balance, muffled sound in my ears, pounding in my head. I started to panic cause i had to work and drive and stand all day and at that point there was no way i could do it. Slater convinced me I had to stay home so I called off work and rested and went to the Urgent Treatment Center a little later that day. The doctor there ran some tests but couldn't conclude any problems and at that point I was feeling a bit better. The biggest thing was my pulse would jump from 90 to 120 when I would stand up, but my blood pressure would stay steady at my typical low level. However, because of my medical history he asked me to make an appointment with my surgeon and to go to the ER if the symptoms persisted or intensified.
Tuesday I went to work. I had a short shift, 7 hours, and luckily a light day. It was not easy but I made it through the day. I just had to rest a lot, by standing still by our desk as much as I could. My symptoms weren't quite as bad Tuesday though either so that helped. I thought maybe they would be gone by Wednesday, so I still decided not to go to the ER Tuesday night. That night I started to try packing a few boxes and I would get winded packing a single box. As long as I stayed still I was okay so I just rested. Wednesday I was scheduled off work and I had a few other appointments that day. I went to my appointments, walking any amount was winding me, and my head just kept pounding harder and harder and finally at 7pm I decided it was time to go to the ER. We waited for three hours to get called back. Apparently I was extremely pale. They ran some blood work and found out my hemoglobin was 5, normal is 12, and according to my records i'm usually a 9-10. They told me i was going to need blood transfusions, and started them immediately. They also admitted me to the hospital. Apparently because of the flu season the hospital is full. I ended up getting two bags of blood that night, but never was moved to a room. I sat in the emergency room all night. That morning they moved me to a transitional room because there still were not any rooms. It was a small private room in the basement, and after the fact i rather wish they would have left me there! =) I was given more blood in this room and finally around 4pm Thursday I was moved to the ICU.
I continued to recieve blood transfusions in ICU (i think i ended up getting 7-8 bags of blood altogether). They put a scope down my throat to find out where the internal bleeding was coming from. They put me on medicines that would help compress the blood vessels to stop the bleeding. They finally put in a main line in ICU which removed the 3 IV's from my hands, wrists, and arms! IV's hurt, especially when they are pushing and pulling fluids from them constantly for days. It's Monday now and my arms still hurt from the IV's. Friday evening I was moved out of ICU into a regular room, which meant a roommate. I also finally had a CT scan done that night around midnight. Saturday they determined that the verices around my stomach were bursting and bleeding form the pressure of the blood inside of them. This is caused because the tumor is compressing a vein that supplies blood to or from the spleen and that was causing the pressure int hese other verices.
The solution at this time is to remove the spleen (which they were suppossed to remove last time!) and eliminate the blood flow from this area. As of Monday morning I am being released form the hospital, but i do not have my surgery scheduled yet. I and/or Tony will continue to make updates to this website as information becomes available and as the surgery progresses and i recover.
June
26, 2009
So I had my annual CT scan done this month, June 10th.
I got the results on Monday, June 22, 2009. The results were the same again
this year--no change. This is the longest I have gone between scans since the
beginning of all of this. We are going to wait another year to do another scan.
He also checked some blood work for pancreatic function, but I don't have those
results yet. My symptoms are not any different than the past though, it has
just been 18 months since I’ve had any blood work and they wanted to
check. So as it stands I'll just be going in once a year for a ct scan to
monitor the tumor.
I have moved to
Cincinnati
in the past year which makes my doctor visits a lot easier now, dealing with
everything locally and I only live 5 minutes from the hospital. The reason for
my move was to go back to school. After getting sick it really changed my
perspective on life and making sure you are doing what you love. There is no
time to waste in this life. I had been thinking a lot about what my passions
were and what career I really wanted. Although I enjoyed my work at the co-op,
I fell into that job, but it wasn't what I wanted to do with my life. I learned
a lot from that place though and it helped me realize where I did want to go.
I'll still use a lot of what I learned there in the future also, just a
different angle. I want to do interior design and focus on commercial brand
development. One of the best interior design schools in the country is in
Cincinnati
, and since I
grew up close to there and have family and friends there it seemed like an
obvious decision to move there to go to school. So I gave up my job and house
and moved here to gain my residency and to apply to school in a year. It has
been a big change with a lot of adjustments. Things seem to be falling into
place finally, but it did not happen fast or like I had planned. I'm working
two jobs, one at the
Cincinnati
museum center at union terminal. I was hired on last month as an assistant
manager and have applied for a promotion as a manager for visitor services.
So until next year!
July 23, 2008
Sorry
it has taken me awhile to get an update out to everyone. Some things had
to be sorted out with management of the website, but now Tony will be able to
help me make the posts. Yea Tony! And yea Becky for doing it for
over a year!
Anyways. I went to the doctor fully armed with support this time around. Monica
and Whitney both went with me, and this time when Dr. Ahmad walked in he was
alone! He actually step a step back when he walked through the
door. It made me smile because now he knows how I feel when he walks in,
me all alone, and him with four doctors.
Let me just start by saying this was the MOST positive doctor's appointment I
have had in a looong time. The scan revealed
that nothing has changed. So again the same news. We all wish it
would shrink, especially with all the time, money, and pills I have been
pouring into my body. And no news is good news in this case. So a
year and a half and no change. Dr. Ahmad finally admitted i do not have cancer. I mean, obviously. We
have all known that for awhile, but he has not admitted to it yet that i know of. So THAT ALONE was a HUGE accomplishment in
my eyes! AND to top it off this is the first time i
have gone to see Ahmad in a year where i did not have
to have my C-19-9 tested. That's the blood marker for pancreatic
cancer. I actually got to walk out of there without getting poked and
prodded =)
We talked for awhile. It was nice having Moni
and Whit with me to talk for me and ask questions. I mean, I asked
questions but they asked WAY more than i ever would
have. We talked about the blood thinners, which he decided to take me
off! GREAT NEWS! Every little bite makes me feel more human and more
normal. When you go through your day taking pills 6 to 7 times a day and
a handful each time--you get funny looks. When you go on trips and half
your suitcase is pills a pill cases--you get searched. I already have to
forewarn people of my medical history now for all sorts of things and I have
this wonderful scar and numb spot on my stomach. So being off Coumadin was a
very welcomed relief! Basically, since the blood clot hasn't changed in the
year I've been on blood thinners, it is not going anywhere. It's
stable. My body has adjusted tot he clot with the additional varices and that's that. One day, many years from now
he says it could go away, but the varices are there
and they aren't going to go away if the clot does. My body is functioning as
properly as possible as it is, and I’m not loosing function of anything,
so keeping me on the blood thinners puts me at high risk and the risk out
weighs any benefit. With me running and even driving I'm at high
risk. What if I fall or get in a car accident. I could bleed to
death. So no more blood thinners!
We talked about the tumor. He said it isn't cancer and that it just seems
to be there and not affecting me since I have no symptoms. My only to
options are to try surgery to remove it again or watch it. Obviously I'm
going to watch it. Questions and answers went something like this.
Q: Have you seen anyone my age with a tumor like this that never turned to
cancer?
A: Yes, but nothing as large as Crystal
Q: Is the tumor going to turn to cancer?
A: It could and it could not. It could go either way. Some people
with cystic tumors live there whole life fine.
Q: Have you had other patients try alternate medicine before and if so what
happened with them?
A: No
Q: What did the other patients who lived with it do differently?
A: Nothing, they just went on with their lives/business.
I'm sure there were more but it's been awhile and now I forget.
I walked away from this appointment for the first time with a positive
outlook. I feel like I am human again. That I can live a moderately
normal life. I don't have to go back for another CT scan now for a full
year. I joke that it's just enough to make sure I have to pay my annual
deductible. I was kind of disappointed after this appointment because I
feel like I was pushed in to the surgery now. I could have avoided the
most horrible experience of my life and a huge scar, and the loss of all my
stomach muscles and tone. Not to mention the worry and fear. If I
would have held tight a bit longer maybe the whole thing could have been
avoided. Hind sight is 20/20, and I think many people put in my position
probably would have ended up right here where I am right now. I am alive though
and life is looking better each day! I appreciate everything so much more
and I am finally taking steps to change the course of my life and do the things
that I really want to do, and have been afraid to make the sacrifices that I
need to make in order to get there. It's going to take a year or two but
I'm going to be living the life I want soon and I can't wait! College
here I come!
April 30, 2008
I had a CT scan last week. I'm leaving for
There hasn't been much to report for awhile because it's been 6 months since the last scan. I kinda hate having to wait so long to get the results but at least i have a lot going on in May to keep my mind off it. I get to see Brooke and Tony and i finally have a friend to room with at my conference, instead of a stranger!
A year has passed since surgery and nothing has changed which is fabulous and disappointing at the same time, but the truth will be told after 13 months and the CT results. Hitting the anniversary date was kind of hard emotionally. To look back and remember what i have gone through, how my life has changed, and the reality of what i try not to dwell on most days-I'm still sick. It was a mixture of emotions. I kinda had a freak out. A few days later sitting in my bosses office we cried about the fact that i am alive and vibrant one year after all this happened to me, after a year where my future was so unknown and not diagnosed. I, we, are happy to be here right now!
I've been continuously fighting the $4,000 medical claim that Humana continues to deny. I have what i think is my final dispute in the mail.
I've been sticking with the supplement regime. After the current bottle of Neprinol and the one in the "extra" box I'm going
to have to quit taking it. I just can't afford the $150 a bottle (per month)
anymore. I'm going to try to continue with all the other supplements at this
point. We'll see. I'll stock up again at the May ODD at work when i get my extra 10% discount and that will last me 3 months.
August is when i'll have to review my finances and
make the next decision. To keep the blood thinning effect without the Neprinol I'm going to increase my
I picked up a second job a few months ago and was working around 16 hours a week. I had to cut back though to Saturday's only. I was working two week nights and it kept me up too late and i wasn't sleeping well or working out. So I'm back on track. Going to bed around 10pm and getting up at 5am. The 5am thing is new but i feel wonderful! I also am not drinking coffee during the week most days. I think this helps me sleep better too. I'm trying to get back on a work out and yoga schedule and figuring out what i'm going to do for my spiritual side. I'm looking into meditation styles and writing a lot. One day I'll be all zen and well rounded mentally and physically =)
Did i ever tell you guys that i figured out from the elimination diet that wheat and dairy are what cause my eczema break outs? Well, if not that's what causes it. So I'm avoiding those foods. It's really hard sometimes though! Especially lately. The hardest part is eating out, but at least i'm not allergic and so sensitive i can't have any. So I tend to eat asian foods out since they are rice heavy and don't use much dairy--and i can handle the little bit of wheat in the soy sauce.
I'll get my results posted after my May 28th appointment!
March 4, 2008
This morning I got a call from Dr. Foxx (Lexington Fam
Doctor). He told me that my blood platelet counts are still low (they tested
them twice since getting back from
This is great news! It means that all this natural stuff is working and
paying off! I think the recent drastic change is due to the addition of Bromelain, Carnivora, and
February 21, 2008
I got a rash in
I was kind of worried about my rash since it was not raised or itchy. It seemed to get worse once i was home. I called my doctor and they said to go in immediately to my family doctor. So I did. my rash is busted capillaries. They did blood work and it is probably related to flying on the blood thinners. Just to make sure they are checking my liver function, kidney function, and blood platelet counts. I get results tomorrow. As long as it starts to go away i'm fine. I'll find out more tomorrow.
January 24, 2008
I celebrated my 30th birthday last weekend. I had all the things I can't have - wine, chocolate, cheese, and wheat. We had a tasting party with tons of different types of everything. There were plates of pairings (fruit, bread, cheese, chocolate, crackers) for each wine, and then many other types of cheeses and chocolates to try. It was delicious and a lot of fun.
On Monday I started the elimination diet. This diet is to try to discover what causes my eczema, the original problem that unveiled all of this. I cannot eat--oranges, corn, peanuts, wheat, wheat-gluten, soy, dairy, eggs, caffeine, chocolate, coffee, meat (by choice although many meats are excluded), honey, sugar, alcohol, and condiments (except some oils and vinegar). It's been 4 days on the diet and it has been surprisingly easy. Not that my sweets and coffee cravings have gone away, but i have been able to find food to eat. Working at the co-op defiantly helps. We sell one cracker/chip that I can eat. So I've been eating a lot of rice crackers with hummus, smoothies with almond butter, fruit, beans, salads, and i can eat sushi without soy sauce. I got sick this week though. I'm not sure if it is because of the diet change or because everyone at work is sick. I'm taking it easy and hopefully I'll be myself again by Monday. The good news is that my eczema is already healing! It has been really bad lately so it looks really bad still, but to me i can tell that it will be gone in a few more days. It's mostly just pink (compared to bright red normally) and flaky now, and it is shrinking in size. This is very exciting because it does mean that food is causing my eczema. In another week I will begin consuming each of the prohibited foods one-at-a-time to determine which one(s) irritate me and cause my eczema. Each food I will eat three times a day for a few days while recording any changes in my skin, digestion, bowl, emotions, etc. Then I will eliminate all foods again for a few days to allow my body to heal before repeating this same procedure with the next food on the list. I think I'm going to test soy first because it would be nice to be able to eat it if it does not irritate me. Although, I can't actually eat any of the banned foods until I've tested each food with a clean slate.
Once, I've completed this experiment I'll know what foods I can and cannot eat. this will fix my eczema problem (for good hopefully!) I already use all natural and mostly organic body care and many household cleaners that are also natural. Those are my other irritants. My doctor believes that if we can clear up the inflammation of my eczema that it could also clear up other inflammations (the tumor). My body will be working properly and this can allow my body to focus on and heal the other medical problems i have.
Financially things are still looking okay from the benefit. We are still disputing the $4,000 test my insurance won't cover, and we'll see how things go with that--i think a final decision will occur this year because we are running out of disputes. Money is slowly running out as i buy large amounts of supplements to aid in the healing of my body, i do buy them in bulk and when i get extra discounts at work and that helps save money. I'm working two jobs too so that is helping with my other debt and i'm hopeful to have my credit cards paid off by the end of the year which puts me in a position to have extra money and be able to afford my supplements without help. i'm also going to be able to fix my roof this year from my bonus at work and from my tax return, so that puts me in a position to be able to refinance my house this year also which again means i'll be able to handle my upcoming medical expenses on my own. so things are defiantly looking up. i could have never done it without all the help from all of you!
i do feel so much better than i used to on the supplements and with the changes i already made, i've joined a gym and am working out (more regularly now that the holidays are over), my assistant Joy and I have signed up to run a 5K for charity March 1st so we are training for that, plus i'm doing yoga (through the gym membership), and with the new dietary changes i am very hopeful that in the next year we will see results. it is very probable that the fluid that causes this tumor is related to my food allergy. keep me in your thoughts in prayers because this year is the year things are going to get better - it's 200great - so it has to get better, right?
November 21
So this morning I got the results from my
He asked me what I want to continue doing. He said he also now feels like it
is not cancer we are dealing with, but a pancreatic cyst. He says the only
thing that worries him is with a cyst you do not know what it will do. He
wanted to discuss where we are and what we are going to do - a direction and he
said we can try the surgery again or keep monitoring it as options. I said I'd
rather not have surgery again, and he agrees and said he doesn't want to have to
do surgery on me either. So we are going to wait 6 months before the
It was still really hard on the drive home. No news is good news, and it is so hard to accept that nothing is changing. I try to be so positive all the time and i convince myself that the tumor is going to go away. Then, when it doesn't it just knocks me down with disappointment and anger and worry. Each time that i go in and what I'm hoping for doesn't happen it is a slap in the face and it is hard to get over it and start all over again.
October 31
I've sent my files to
I've also decided to try out this treatment of brain-state conditioning. It is
a modality built upon the science of neurofeedback.
Check out their website for information - www.tuntechnologies.com
- i'm not completely versed on it yet, but will meet
with him on Sunday (11/4) and will then be more able to better explain
things.
I'm making an effort to do walk three days a week for an hour and do yoga a few
times a week and get regular massages to help me deal with stress better.
I thrive on stress so I need to learn to live without it =) I'm also
going to bed at 10 or 10:30 at night and am making sure that I get 8 hours of
sleep so my body has time to rest, repair, and heal. I keep on trying to
eat better nad eat more veggies every week. I
feel like I'm getting better at it and then Halloween happens and Thanksgiving
is next month and then Christmas cookies, and so on. So I'm doing my
best!
I had my
October 8
I've been following my enzyme program and have done a pretty decent
job at remembering to take all my pills every day. Sometimes I forget
to take the last ones of the day if I'm really tired and pass out on
the couch, and weekends get tricky without the structure of the
weekday schedule. My coumadin levels were never
altered from the
addition of the neprinol however my inr is more in range of the 2-3
that they want it in. It registered 2.3 for a few weeks in a row and
now that I'm on my full dosage of the neprinol i'm only going in once
a month. My next inr check is October 17.
My
of this month or early November. I have my appointment with Dr. Ahmad in Cincy for November 14. I have some questions for him
this time. I want to find out how come draining it is not an option.
I've had a
few people tell me about other people being told this for benign
tumors, and a doctor of a friend looked at my files and also suggested
this. I'm also going to ask about REXIN-G, which seems like a cancer
only medicine from my research but it can't hurt to see where trials
are on this treatment and what it entails. I'm also going to ask if
there are other options with the blood clot and if a specialist would
be more beneficial for my treatment with this. I've asked my family
doctor about other options and he said there isn't. It just seems
crazy that there is nothing else they can do. I'm also considering
adding yet another doctor to my list so I can have more natural
treatments. There is a local doctor who specializes in natural
medicine and i'm beginning to think it may be helpful
to get more
general testing done to see if someone can't figure out what the real
problem is that resulted in this tumor. Guess I'll do that after this
feel like i've run out of options if this does not
work, and i just
don't know where else to go or what else to do.
August 26
My dad has been in town this past week and I've been
working two jobs so life has been a bit busy. I started week two of the Neprinol
yesterday and have been doing really well at remembering to
take my
meds every day. I have a seven slot pill box for each
day. This way
I can fill them up on the weekends and can just grab a box
each day.
It has worked really well to make sure I have time to take
them and
remeber tham and can carry the 20 or 30 something different types
of
pills with me at all times. So far it has not
decreased the coumadin
dosage I'm taking, but I'm getting tested every week for 6
weeks to be
safe. I also had additional blood work last week to
send to my
medical researcher. Once he gets those results we will
be talking
again about what I'm doing and possibly still adding a few
more things
to my regimine. I feel good
though and my dad did an awesome job
finishing the remodel. So after 2 years it is finally
finished!
(well besides the touch up painting and staining we have to
do
still--we are saving that for the cold winter months though
when there
is nothing to do).
I also have a final count from the benefit--$3,915.10!
Thank all of
you for your love and support. We exceeded the goal by
almost one
thousand dollars and if you add in the t-shirts we did
exceed the goal
by over a thousand dollars! This takes a lot of
pressure of me by
knowing that I can afford to follow through with the natural
medicine
treatments that insurance does not pay for, and increases my
chances
of recovery. I was able to buy almost all the
supplements I need this
past week to fully be on the regime suggested. I
just have a few
other items to get. Thank you all so very much who we able
to help!
August 3
Basically there is no update from my appointment in Cincy
with Dr. Ahmad yesterday. Basically I waited for an hour for them to come
into the room and say they didn't have my CT, after i
asked if a week between the scan and appointment was enough time and assured it
was. However, I am smarter than them and brought my copy of the CT with
me. I left it in the car though, hopeful they would have it. So I
hiked to my car and vrought it in for them. Dr.
Ahmad says everything looks the same. He kept my scans wit the promise of
returning them to me. I told them they had to go back to
I was also told that I will never regain the feeling in my stomach from the
nerves being cut from surgery. I will always have a spot above my belly
button and below the incision that is numb. =(
Also, Mayo clinic called me back yesterday and offered no additional
options. They just want to cut me open because they are certain they can
remove it. Not sure I'm willing to be a game of operation just yet.
I feel good, I have my energy, and no pain. It's not worth going through
it all over again on their word they can remove it, Dr. Ahmad was certain he
could remove it also.
I'll talk to the guy in San Fran next week and try his protocal
for awhile. Hopefully it will work to reduce the tumor.
July 19
Last night I talked to the medical researcher in San Fran. He does have some protocols to suggest, however anything he puts me on will amplify the blood thinners I am on. This will necessitate me being monitored every week for awhile. He is concerned about this and wants to wait and see what happens after I get my CT results on the 30th before moving forward. He is hopeful that the blood clot will be absorbed and i will be taken off the blood thinners (as am I!). So at this point we are going to wait until I get my results, I'll be mailing him those results, and we will have another phone conference on August 7 to move forward with a plan of action. I will more than likely try out his protocol - so let's hope it isn't insanely expensive!
July 12
Today I had an interview for an article on me for one of our local community papers - ACE Weekly. They will be running a story on me and also running an ad to advertise the benefit. This is awesome and will definitely help spread the word!
I also picked up Jason and I's engagement pictures today. They turned out really good and when you come over for our open house august 11 you can see them.
Then I called Mayo Clinic and Johns Hopkins to see if they got my records. Mayo clinic has them and they are still reviewing them in the pancreatic clinic. they said they will call me after they are finished reviewing them. Johns Hopkins has no record of receiving them and then in a very confusing manner told me they will not even record my records and scans until they receive the actual biopsy slides. So I called my doctor in cincy and requested that slides from all three biopsies be sent to John Hopkins. It would have been nice if they would have told me from the beginning but i should know better by now.
That's all for now. I'll keep everyone updates as I learn things.
Please help spread the word about the benefit and to buy benefit tickets in advance because it will ensure there is enough food! Help me spread the word - this benefit needs to raise thousands of dollars to help ensure i can pursue care.
July 7
It seems like nothing has been happening lately, but that is far from the truth. I have been seeing my family doctor regularly to monitor my coumadin. I've also been following the natural path and looking into sending my records to Johns Hopkins and the Mayo Clinic. Monday I shipped three fat packages of my records off. In two weeks, I have a phone conference with the medical researcher in San Fran, and I'll follow up with Johns Hopkins and Mayo in a few weeks to see if they think they can offer any more than the doctors in Cincy. On July 23rd I have another CT scan and on July 30 I go back to see Dr. Ahmad in cincy. He will check the status of the blood clot and the size of the tumor from the CT and give me those results on the 30th.
I'm also working on my dinner benefit and trying to find a space for the
night club benefit both in
There are also t-shirts that you can buy to help support. Thanks to
Jason and I are almost done with the basement and 2nd floor remodels. Jason still has insulation to hang in the attic, and we have tile to put down in one and one third of the bathrooms, and two half walls to paint. Then there is all the trim in the whole house to paint! Then we are on hold until we can save some money and dad comes back down to finish the basement. Hopefully it will be done soon! We're already looking at two summers of working on this project.
I'm working a full schedule at work again - 42 hours a week - even with the doctor appointments and half day to work on medical and benefit stuff. So that equals some long days at the office 4 days a week. We are getting close to really starting the remodel there too so I'm having to spend lots of work time on that too. I'm also hiring an assistant so lots of interviews now and training time to come. I'll be packing up my office in a few months to move it and then to move back into a nice, new office in the fall - so that's exciting!
I'm planning on starting a mini-second job in the next few months. It's short term and hopefully starts after the benefit. It will take lots of after-work time and weekend time for a few months, but then it will be over and it is some extra cash to help with all the house expenses of this remodel we started before we knew about all the medical problems and especially with the roof needing to be done within the next year, and with the possibility of the furnance not starting this winter (cross your fingers it lasts another year, or even better - two!). So that will be good for me and then maybe I'll be able to go back to cleaning in the evenings to help pay for everything too. I can't do that though unless I can commit 100% to being there my days. So any trips for doctor visits will have to be ruled out at that point to go back.
As you can tell it has been a busy past few months. We've had some
out-of-town visitors lately, and I'm looking forward to some upcoming trips and
getting to have some fun this summer. We are going camping with friends
in a few weekends and i'm going to
So even though it seems like things have
been quiet - that is far from the truth!
July 4
Expenses
Natropath $200
Supplements $150
IUD $430
Daniel Chapter One Supplements $430
Private Blood Work $306
Jan 1 - June 19 uncivered medical expenses from
insurance $3,087.78
Lost Wages from surgery $556
Travel Expenses $262.40
Total = $5,422.18
Donations
Louisville Benefit $523
Personal Donations $760
Website Donations as of 4/20 $300
Southland Association Board Member Donation $1750.00
t-shirts
Oleika Benefit
Total = $3,333.00
June 17
So I heard back from the lady in
May 11
First, I'm back to work full-time this week. It was easy Monday and
Tuesday but after an 8 a.m. training i had to teach
Wednesday and another 8a.m. meeteing Thursday - I AM
exhausted! Life as usual is hard work after 5 weeks of nothing.
My pancreatic cancer marker blood test can back in the normal range. My
oncologist does not want to administer chemo (good because without prrof of cancer i'm not doing it and
i'm getting my hair cut now that i
know it isn't going to all fall out). My blood platelets are low (i don't know why - every blood test i've
had during all this has given these results, even before all the meds), which
puts me at higher risk during chemo anyways, and he said if it isn't cancer
then chemo won't work. Even if it is low grade cancer that they can't
detect, he said it wouldn't work. The plan of action from Cincy now is to wait and to monitor me. They don't
know what else to do. So in July I will have another CT scan and another
blood test to test this cancer marker. Until then they wait, and
hopefully keep talking about me to other hospitals.
In the meantime, I'm taking my own actions. That is I have talked to the
lady in
Also, next week I am having a mamogram done as
requested by my oncologist to rule out breast cancer that has spread to my
pancreas. If it is breast cancer it will not show up in blood work for
pancreatic cancer, the reason for this test. Hopefully insurance pays for
the mammogram because they don't cover them for anyone under 35.
I also get my IUD inserted next week (this is because i
cannot take hormonal birth control because of the blood clot). Insurance
has agreed to pay for half because of my condition.
And just to make sure i maximixe
doctor visits in one week I have scheduled my follow up dental appointment i need and have been putting off because of everything
else. So I have 4 appointmetns on
Tuesday! Yeah i love being stabbed and prodded
at =( at least it will all be over with in one day.
If this lady does not think she can help me I'll be making an appointment with
John Hopkins in
May 5, 2007
Editor's note: The doctor called Crystal
yesterday and her markers for pancreatic cancer were all in the normal range,
i.e. negative for cancer...more will be posted on this later as we find out,
but right now there is no treatment planned as
I'm going back to work on Monday, May 7! Kinda
glad to get a schedule back, and hope i can wake up
early and handle a day without naps. I'm kinda
tired of being home though. Although once i'm
fully healed i'd love to be at home again so i can paint, and paint some more. oh well, no
vacations for the rest of this year. Maybe i'll
get those curtains done over the weekend. With all this time i have successfully procrastinated in not finishing them,
typical me! Give me time and nothing will get done, give me a few days
and it will all be done.
Also, Jason is moving to
Today i called a doctor that does pretty much the
same thing as Dr. Gonzales, pancreatic enzyme therapy. I'm waiting to
hear back from her and hopefully she will accept me as a patient. (and
hopefully she is cheaper than Dr. Gonzales!) She is in
My friends and I are also working on a dinner benefit for this summer. We
are accepting donations for the raffle of art, jewlry,
gift baskets, gift certificates, etc. If you would like to donate you may
contact me or Becky (who is managing the website). We will pass on
information to whoever is handling it. There will be more information on
the benefit page as we know it. If i see the
doctor in
May 4, 2007
Yesterday I met with both Dr. Ahmad and Dr. Safa
(an oncologist in cincy that specializes in
pancreatic chemo). My test results from the last biopsy also came back
inconclusive, this makes three times. On Monday they ordered some more blood
work from me to test the pancreatic cancer marker in my blood. We are still
waiting on these results.
Dr. Ahmad said basically at this point it is up to me and an oncologist of what
i will do next. Since i
have no real proof of cancer other than Dr. Ahmad believing it looked like it
from surgery, most oncologists will not want to do chemo. It is my choice at
this point to do chemo or to monitor the tumor with Dr. Ahmad.
During my appointment with Dr. Safa he suggested i get a mammogram to rule out breast cancer than has spread
to my pancreas. This is because my situation is so rare in someone my age. So,
I’ll have that done soon. He also told me another reason people will not
want to administer chemo to me is that my blood platelet counts are low. They
have been tested twice, both times being low. They tested them again yesterday.
Dr. Safa is willing to administer the chemo because
he has worked with Ahmad so much and trusts his opinion, however, he is worried
about my platelets. The chemo they would administer is intervenous
and weekly doses for about 6 weeks, with a small break and four more doses.
At this point i am looking into other doctors. I
still have not spoke with Melinda's cousin who has worked with many pancreatic
specialists throughout the country, that will be tonight. I'm considering
trying to get an appointment at John Hopkins or with a lady in
We'll wait to see what these few results we are waiting for are at this point
though. Blood work and another CT if they order it next.
April 30, 2007
The benefit in
April 26, 2007
I get my biopsy results back next week. My appointment is Wednesday, May 2 at 11:30a.m. I will get results to Becky as soon as i can to post on the website. I may also meet with the oncologist there at UC that day after i meet with Dr. Ahmad to discuss any future chemo treatments. So don't call me, I'll get the word out as soon as I can.
April 25, 2007
I went in this morning to UC hospital to have another scope/ biopsy done. I'm fine, just a little groggy from the sedation. I also have a pinched nerve or tight muscle in my butt and it hurts to walk. I can't stand up straight, even worse than normal. So that kinda sucks. They took lots of different biopsy's today and i'm on antibiotics. I should find out the results some time next week.
April 17, 2007
We (Sarci, Monica, me) went to
My biopsy results came back inconclusive from the samples they took from
surgery. This is common because the cyst/tumor creates scar tissue
as it grows. They are pretty sure it is cancer although they do not have
enough evidence to prove it at this point. So I go in next week, don't
know when yet, for a scope down my throat into my stomach and they will biopsy
it through my stomach. Last time they took fluid, this time they will
scrape cells. If these results come back inconclusive then i will have another CT scan to see if it has grown from the
They are also making an appointment for me to talk to an oncologist so i may ask questions about chemo. I'm scared to do
chemo. I'm glad that i have more time to educate
myself about it and ask questions before they are ready to start with it.
I'm also doing all sorts of natural stuff now on my own through diet and
supplements, and I'm glad i have a little more time
to let it work first. So if you have chemo knowledge please pass it on my
way. I'll be on-line searching for information over the next few weeks.
I asked about radiation treatment verses chemo and Dr. Ahmad said he has had
better results with chemo. He said by not doing radiation they are able
to do higher doses of chemo and get results quicker. He prefers the chemo
only route.
I also asked about natural methods through actual MD's, specifically Dr.
Gonzales in NYC. I was answered with a very medical opinion and
explanation of the items discussed in the excerpt i
had him read. Obviously their is bias on both sides, but i wanted to see if the enzyme therapy Dr. Gonzales does is
anything that Dr. Ahmad has heard of or explored. I'm going to call Dr.
Gonzales and see what happens. The enzyme therapy i
can somewhat recreate on my own, however i cannot be
on the coumadin to do it. I'm on coumadin for at least three months before they do a CT scan
to see the progress of the blood clot thinning.
I can drive now too! As long as I'm not on pain meds, and i rarely take them. Only if I'm really hurting and at
night. It's been about three days since I've taken any. My cold
sweats have also gone away. That makes me very happy. Waking up
freezing in a pool of sweat is gross and very uncomfortable! I still
can't sleep on my stomach that, that is what I'm looking forward to the most
now. Sleep just isn't the same on your back.
Oh and my house looks so awesome! Thanks to my dad who stayed about two
and a half weeks. Mom comes next week and she's gonna
help with my flower beds, so this cold weather better go away! Plus i need some good book and porch time before i go back to work, time is running out.
April 11, 2007
I'm Home!
So my week in the hospital is over and i'm finally
home on my bed with my kitties and finally some myspace!
Thank you all for your love, positive energy and prayers.
I definitely had a fan club at the hospital and all the staff was so impressed
by how many people came to support me and visit me. i
guess i set record. =)
i got lots of flowers and cards and many messages of
love and support through my friends who were there.
i also got to come home to my own extreme makeover
home edition. my dad and step mom have been slaving away at my
house. my basement remodel is now done with new windows to boot! i also got all kinds off small jobs done around the
house. once i can paint - i
can start in 6 weeks. i'll have people
over. health permitting of course.
So surgery was unsuccessful although my healing is awesome. i'm very upbeat and have all my spunk back. i just can't lift anything over a gallon a milk for 6
weeks. i'm on coumadin
to work out my blood clot and i go monday to talk about chemo. We go to that after i'm healed from surgery. healing is number one right
now.
April 10, 2007
1:45 PM:
10 AM:
April 6, 2007
Yesterday
April 3, 2007
8:10 AM --
We should have a few updates as the day goes by, but for now all we know is
that she made it in. There are 15 people in the waiting room -- so the support
is there. I'll post things as I hear them.
10:00 AM -- The team just let everyone know that they are still looking around in surgery, and that nothing has been removed yet. They will check back with the waiting room folks in an hour or two.
1:00 PM --
I will post more information as I have it. But
March 20, 2007
All my blood tests came back from the Hematologist at
The Hematologist upped my Lovonx shots to two a day. I'm starting to get a huge bruise across my entire tummy from the injections, and it hasn't gotten any easier to give myself shots. I get to stop the shots after April 1.
I will be getting an IUD to get me off pills still and have permission from my surgeon to do that as soon as I'm home from surgery and can schedule it.
Everything else is still on track and I'm in my final weeks before surgery, still pretty positive, only have had one really bad day last week. Those days are usually intensified by doctor visits, and two in one day last week nudged me over the top. I talked to my boss the next day and then felt myself again. She is really great to talk to and calms me and make s me feel better every time.
Oh, I also found out that people here at work have donated to me their vacation time, enough that I will not go without pay the two weeks before my disability pay kicks in. This is great news! I really appreciate all who are helping make this so much easier than it could be.
March 13, 2007
Update from Hematologist at
They put me on Lovinox shots. So I have to give myself a shot once a day (well, I’m making Sarci do it as much as I can - I’m really freaked out about doing it myself). The needle doesn't hurt, but the drugs sting and it leaves bruises. So no one is beating me =) just the doctor's making me stab myself all the time. Sarci may enjoy it though revenge for me rearranging the house and making coffee at 5a.m. =) Oh and i have my own biohazard box. (i think that's funny) The Hematologist plans to put me a Cumadin pills after my surgery. I back to him on April 13 if i can make it.
Other than that it was a bunch of what if's. I do have to talk to my Gynocologist (yeah another doctor!) about alternative forms of birth control though because any hormonal birth control is a coagulative (sp?). So everyone tell Jason how much more of a man he would be to get a vasectomy because he's scared. Maybe we'll both just be infertile - that'd be a lot easier!
March 7, 2007
(Editor's note: Sorry this wasn't up sooner. I was on vacation.)
If you want to donate blood for my blood transfusions. Direct Donations are very difficult. I have to have a doctor order, you have to be a match in blood type, and there is a $100 charge. So that is kinda crazy.
You can make donations in my name to replace the blood supply from my use. So it doesn't go to me, and you can be any blood type. It's like a blood drive, when you go and donate in the name of your business.
If you want to donate just go to your local blood center. Tell them you
are donating in the name of Crystal Stites and the
main donation center is the
March 6, 2007
My pre-op appointment is Monday, April 2.
Surgery will begin around 7:30 - 8 a.m. on April 2. I have to be there at 6a.m.
I am the only surgery scheduled that day for the doctors involved in my procedure.
Surgery is a minimum of 4 hours and because of my bleeding risks will probably be a few hours longer.
I will be in ICU for a day after surgery.
It will be a few days before i go on fluids and then a little longer before foods. I can have you guys bring me good vegetarian food though! Vegetarian hospital food - just saying it makes me want to yak.
I will be able to go back to
March 6, 2007
So I did end up having to go to the doctor yesterday. The nurse called back Friday and left me a message i got that night. She said she spoke too soon and Dr. Ahmad did want to see me Monday. So I went alone expecting this to be nothing more than him making sure i understood what she told me over the phone.
Not so much.
He wants to do surgery immediately. He scheduled my surgery for April 3rd at the University of Cincinnati Hospital. I will be in the hospital for one week and off work for a month total.
I start Cumadin this Friday and will be on that for two weeks. Then i will be on some shot for a week. I'm also going to my Naturopath and getting the natural blood thinners for a week or two. If the blood clot is gone or thinned it will reduce my risk at surgery. I may need blood transfusions from the clot and resulting varices. My risk of dying from bleeding out is less than 5%. I will find out about friends and family donating blood in my name for the surgery.
Surgery Details:
* The incision will be an upside down smiley face.
* I will loose my spleen. I will have to get an immunization shot every
five years for the rest of my life for losing my spleen.
* I will loose at least 50% of my pancreas.
Surgery Risks:
* Infection of wound
* Bleeding
* Pancreatic leakage 20% risk
* I may have to take pancreatic enzymes for the rest of my life.
* I may be diabetic after surgery. This could mean insulin.
I still have many questions to ask because I was in shock to hear this yesterday. I will post info as i learn it. I still have my appointment Friday for the blood work-up and will have a pre-op appointment too.
I do have disability pay starting the 15th day, but will not have enough vacation to pay me for the two weeks before disability kicks in. Disability pays me 60% of my salary. I have people helping me though. People at work are donating their vacation time to me, and i get three checks in March which will help. Also Jason is giving me about half my salary every other week from his pocket. Then there are all your donations for the medical bills. So things should be okay to pay the minimum bills while I’m out of work!
March 2, 2007
So biopsy results. There is no cancer but they did find the mucinex (?) in it that it could become cancer in the
future. So I will definitely be having surgery later this year. We
have to take care of the blood clot here at
February 22, 2007
Today brought more good news and more doctor appointments.
First I see a Natureopath on Friday which I scheduled
myself. Doctor Appointment # 1.Dr. Ahmad is Cincy
says that the options of vascular surgery are not needed and will not help the
situation. He strongly recommends I do not have that done.
Dr. Ahmad believes the vein blockage is a blood clot. He said that the mass is not close enough to it to push on it and block the vein. In Cincy they have seen similar cases, but not to this magnitude. If it is a clot I will be put on medication to thin my blood and break it up.
Since the
Next Monday I go in to have another scope. This one will be an
ultrasound scope that will go down my throat and into my stomach. The
stomach being close to the mass will give them a clearer look at
things. They will also biopsy the mass during this procedure. So
Monday I will be knocked out for this procedure in
Then on March 5 I go back in to meet with Dr. Ahmad again for a plan of action. Doctor Appointment #4.
Basically at this point this is how
So as long as results come back as they suspect (one type of cyst or the
other) my life will not be changing for awhile. At this point we are
planning on going to
So overall good news, and again not really knowing the plan. I'm glad I went to cincy and I’m glad there is someone who specializes in pancreatic masses so close to home.
Let the doctor visits begin....
February 13, 2007
Today I saw Dr. McGrath at
From these results they are pretty sure that the mass has been there for a long time. The mass does have to be removed. They are not going to biopsy. It isn't going to spread to other parts of my body but it will continue to grow.
The vein that is blocked leading to my liver has caused a backup of blood
below my pancreas and my body has created hundreds of small veins to take blood
to my liver. These veins are what make surgery dangerous. The
solution at
First they need to get rid of these veins. They want to do a vein bypass surgery that would take the blood away from feeding these veins and redirect it to another vein. This could cause liver function problems but it would allow for them to remove the mass. This surgery could also cause me to have mental changes like when they do heart surgery - the crazies for a few days or weeks.
Second, they will look to see if the vein bypass worked. If it does the hundreds of little veins will be dried up and they can safely go in and remove the mass. I still can lose part to all of my pancreas and will probably loose my spleen.
I have been told by my surgeon to get a second opinion because the
complexity and rarity of my situation. He has talked to doctors at
If I loose all my pancreas I will be diabetic. If I loose liver function I will have to control my diet even m ore. The good thing as that with the help and support of my friends and family I will be able to control a lot of the problems I develop through a disciplined diet. This is going to be hard and I will not be able to do it alone but I’m in a good place for anything diet related. I will no longer be able to go out to the dame and mia's every weekend though because temptation leads to failure. So this means i may have to make some serious changes to my lifestyle. It will not be fun or easy, but living is worth it.
So what is happening right now is more waiting. I am trying to get into UC next week, the week after at the latest. I'm keeping my surgeon here up to date with anything that happens there. If UC is more skilled/ experienced with such cases and is more confident in their success and less loss of organs and organ functions then I will have my surgeries there. If they are equal then I will probably stay here so I am close to home.
February 6, 2007
I went in today and found out more bad news. The tumor, it will now be called, is 8.5 cm. It has completely blocked two major veins. Blood is baking up in my spleen causing it to be swollen. Blood to my liver is also restricted. The blood vessels that would normally be minor are now enlarged and pose a greater threat for surgery by increasing my chances of bleeding out.\
The doctors are somewhat stumped by my lack of symptoms (no jaundice or pain). They have not decided if they are going to do surgery or not because surgery is going to be dangerous. I go back again next Tuesday to see what options they have come up with. If i have surgery there are chances that I will lose my spleen, part of my pancreas that my liver may be damaged, and could need reconstructive vein surgery. I will definitely be out of commission for some time if this happens and in the hospital for a week or so.
My other option mentioned at this point is radiation therapy or chemo.