Okay, so I'd officially been diagnosed with Dermatomyositis. This was back in late November of 2009. My doctors (rheumatologist and dermatologist) immediately put me on super doses of steroids as well as a couple antimalarials and immunosuppresants. (Just some other drugs that are supposed to be somewhat effective in treating the skin issues in these kinds of autoimmune diseseases). It provided relief within days. I still had a bad rash and had a hard time moving my legs, but the swelling had gone down and the muscle pain was all but gone. Most people have a love/hate relationship with Prednisone. It has some wicked side effects, but it sure does work its magic.
As the drugs were doing their thing, Dr. Koening began scheduling me for just about every Cancer screening known to man. All of them. Apparently there is some connection between Cancer and Dermatomyositis. They don't quite understand it but a significant percentage of Dermatomyositis patients are soon after diagnosed with some form of Cancer, so they do all the screenings just to be safe. I wasn't too concerned about it. It was just a formality. He was just being overly thorough.
The mammogram was one of the first screenings we did back in January of 2010. It was clean. I also underwent a CT scan of the abdomen to check for any unusual masses there. They found a small cyst like mass in my liver and wanted me to do a follow up MRI to make sure it wasn't anything more significant. My doctors even seemed sure that it was nothing so though they insisted I schedule the MRI, they didn't rush me. I didn't end up doing it until just a month ago. Dr. Koening called me a couple of days after and said that the mass in my liver was nothing, but the MRI happened to pick up the lower part of my breast revealing a 4 cm lump that didn't show on the mammogram last January. He wanted me to come in for an ultrasound and biopsy. We did them on the same day. Ultrasound confirmed that the mass wasn't just fluid. It had portions of tissue that were blood fed. The biopsy determined that the tissue was malignant and THAT is how this all started.
It's kind of odd the way it all worked. I never would have had the Cancer screenings if I hadn't first been diagnosed with Dermatomyositis. And they wouldn't have caught the lump in the breast if they hadn't inadvertantly shot a little high on MRI of the liver. Crazy thing is that the current theory among all my doctors now (dermatologist, rheumatologist, oncologist, yadda, yadda) is that the Cancer was there all along and has been growing for years now safely hidden away in my dense breast tissue (could hide a buick, remember?) but the Cancer kind of kick started the Dermatomyositis which revealed everything. AND, with successful treatment of the Cancer, the Dermatomyositis will just go away. Here's to hoping they are right.
Tuesday, November 16, 2010
Monday, November 15, 2010
It all started when...
So June of last year, about 6 weeks after the angel baby was born I got a little red spot on my nose. Looked like a zit except it didn't go away. Started to spread over my nose, cheeks, and chin. Got worse in the sun and was itchy. Went to a doctor and she said it was some sort of allergic reaction, threw some steroids at me and sent me on my way. After 3 weeks when it was back again (her drugs really never did much more than fade it a little) I went back to her she threw some more drugs at me and told me I should probably go see a dermatologist. Went to see a dermatologist. He wasn't sure what it was either. Gave me a script for some steroid cream. Went to see an allergist. He was determined to diagnose me with some sort of food allergy. I remember specifically asking him, "Is there any way that this could possibly be caused by something other than allergies?" "Oh, no," he said. "This is a textbook case of allergies." The big idiot.
So my brother suggested that I see a naturopath of sorts that had helped my sister in law with some food allergies. I was pretty desperate by that time so I went to see him. I don't remember what his actual title was but I will forever lovingly refer to him as my witch doctor. Not because he cured my "allergies," but because he was the first to even suggest that I have some blood work done to see if there were anything odd going on there. He mentioned that many autoimmune diseases first manifest themselves as a rash.
Well, at this point, I was far beyond the rash. My whole face was red, my eyes were swollen, arms and hands were red and patchy and I was starting to experience extreme muscle pain and weakness. I couldn't kneel down on the floor because it felt like my thighs were on fire. I couldn't push myself up from a sitting position because I had no strength in my legs. Oh, and my hair was falling out.
So.... I went back to my primary care, demanded a blood test and a whole load of steroids for the road. A few days later they called me and said I had elevated levels of ANA antibodies in my blood. Simply put, something was wrong and I needed to see a rhuematologist, but oh, by the way, the local rheumys were booked out 6 months.
I have learned over the last 10 years that fear is a pretty powerful motivator and you can move mountains when you're scared enough. So I went into research mode and had pretty much diagnosed myself with Lupus. I went back to the local dermatologist I had seen earlier, who was very nice, but unable to help, and asked him to give me what is called a Lupus Band Test. It is a diagnositic procedure that would get me one step closer to knowing if Lupus was actually my problem. If I could determine that, I would know where to go next. He told me that he didn't have the equipment to do that kind of sophisticated test but would refer me to a collegue who could see me in about 8 weeks. Okay, better than 6 months, but after about 2 weeks I was so miserable and could barely drag myself out of bed in the mornings. My eyes were horribly swollen and hair was thinning quickly. I called the receptionist for this new dermatologist and basically cried over the phone telling her that I wasn't sure I would make it another month. She said there was no way possible she could get me in, but she did some calling and found an opening with another dermatologist, who specialized in autoimmune diseases up at the University of Utah in two days. I took it.
Two days later I went up to the University Hospital in all my glory, no makeup to cover up the leprosy, no glasses to cover up the swollen eyes. I was some kind of hottie, that's for sure. Anyway, they took me into an examining room where I told my whole history to a medical assistant and then told him that I thought I had Lupus and wanted to be tested for Lupus. He went out to "discuss" with the dermatologist that I was waiting to see. About 15 minutes later, Dr. Sontheimer walks in, pulls up chair and says right away, "It's not lupus."
Well, I am just staring at him thinking, "If you even mention the word 'allergies,' I'm am going postal this very second and you are going to see a fit of violence unlike any other." Lucky for him he didn't. He said, "You have an autoimmune disease called Dermatomyositis." Well that stopped me for a second. If I hadn't been so miserable, I might have been amused by the fact that he almost seemed excited about my diagnosis. I found out later that he actually was fairly interested in this particular condition, he's done a bit of research and has contributed to the medical literature in this area. He even whipped out a camera and said, "You know, we are a teaching hospital, would you mind if I took some photos for my students?" Fine. Whatever.
Long story short, it is a condition very similar to Lupus. Don't really know what causes it, but basically one day my immune system up and decided it hated me and started attacking healthy skin and muscle tissue. I asked him if I still needed to see a rheumatologist and he said, "Well, as a matter of fact, we are doing a combined clinic today and I have a collegue working with me who is a rheumatologist and I'd love to bring him in to meet you." I just about started crying. Ten minutes later Dr. Koening walked in. Between the three of us we figured out what my treatment should be to give me some immediate relief and then where to go from there. And even better, they set up regular appointments with me (no more 6 month waiting periods)and different tests to monitor my progress. Dr. Koening especially called me after each test and spent a good 20 to 30 minutes on the phone with me explaining what the results meant, how he thought we should proceed and asked how I felt about the progress of my treatment. I'm sure I'm sounding a little melodramatic, but these two men saved me and I will be forever endebted to them. Thank God for good doctors. There truly are so few of them.
So I'm about 5000 words into my explanation of how this all started and I haven't even gotten to the part that has to do with cancer, but I'm getting there. Just will have to wait. Going to bed.
So my brother suggested that I see a naturopath of sorts that had helped my sister in law with some food allergies. I was pretty desperate by that time so I went to see him. I don't remember what his actual title was but I will forever lovingly refer to him as my witch doctor. Not because he cured my "allergies," but because he was the first to even suggest that I have some blood work done to see if there were anything odd going on there. He mentioned that many autoimmune diseases first manifest themselves as a rash.
Well, at this point, I was far beyond the rash. My whole face was red, my eyes were swollen, arms and hands were red and patchy and I was starting to experience extreme muscle pain and weakness. I couldn't kneel down on the floor because it felt like my thighs were on fire. I couldn't push myself up from a sitting position because I had no strength in my legs. Oh, and my hair was falling out.
So.... I went back to my primary care, demanded a blood test and a whole load of steroids for the road. A few days later they called me and said I had elevated levels of ANA antibodies in my blood. Simply put, something was wrong and I needed to see a rhuematologist, but oh, by the way, the local rheumys were booked out 6 months.
I have learned over the last 10 years that fear is a pretty powerful motivator and you can move mountains when you're scared enough. So I went into research mode and had pretty much diagnosed myself with Lupus. I went back to the local dermatologist I had seen earlier, who was very nice, but unable to help, and asked him to give me what is called a Lupus Band Test. It is a diagnositic procedure that would get me one step closer to knowing if Lupus was actually my problem. If I could determine that, I would know where to go next. He told me that he didn't have the equipment to do that kind of sophisticated test but would refer me to a collegue who could see me in about 8 weeks. Okay, better than 6 months, but after about 2 weeks I was so miserable and could barely drag myself out of bed in the mornings. My eyes were horribly swollen and hair was thinning quickly. I called the receptionist for this new dermatologist and basically cried over the phone telling her that I wasn't sure I would make it another month. She said there was no way possible she could get me in, but she did some calling and found an opening with another dermatologist, who specialized in autoimmune diseases up at the University of Utah in two days. I took it.
Two days later I went up to the University Hospital in all my glory, no makeup to cover up the leprosy, no glasses to cover up the swollen eyes. I was some kind of hottie, that's for sure. Anyway, they took me into an examining room where I told my whole history to a medical assistant and then told him that I thought I had Lupus and wanted to be tested for Lupus. He went out to "discuss" with the dermatologist that I was waiting to see. About 15 minutes later, Dr. Sontheimer walks in, pulls up chair and says right away, "It's not lupus."
Well, I am just staring at him thinking, "If you even mention the word 'allergies,' I'm am going postal this very second and you are going to see a fit of violence unlike any other." Lucky for him he didn't. He said, "You have an autoimmune disease called Dermatomyositis." Well that stopped me for a second. If I hadn't been so miserable, I might have been amused by the fact that he almost seemed excited about my diagnosis. I found out later that he actually was fairly interested in this particular condition, he's done a bit of research and has contributed to the medical literature in this area. He even whipped out a camera and said, "You know, we are a teaching hospital, would you mind if I took some photos for my students?" Fine. Whatever.
Long story short, it is a condition very similar to Lupus. Don't really know what causes it, but basically one day my immune system up and decided it hated me and started attacking healthy skin and muscle tissue. I asked him if I still needed to see a rheumatologist and he said, "Well, as a matter of fact, we are doing a combined clinic today and I have a collegue working with me who is a rheumatologist and I'd love to bring him in to meet you." I just about started crying. Ten minutes later Dr. Koening walked in. Between the three of us we figured out what my treatment should be to give me some immediate relief and then where to go from there. And even better, they set up regular appointments with me (no more 6 month waiting periods)and different tests to monitor my progress. Dr. Koening especially called me after each test and spent a good 20 to 30 minutes on the phone with me explaining what the results meant, how he thought we should proceed and asked how I felt about the progress of my treatment. I'm sure I'm sounding a little melodramatic, but these two men saved me and I will be forever endebted to them. Thank God for good doctors. There truly are so few of them.
So I'm about 5000 words into my explanation of how this all started and I haven't even gotten to the part that has to do with cancer, but I'm getting there. Just will have to wait. Going to bed.
Sunday, November 14, 2010
Easy does it.
So today was okay. Hopefully it was the worst of my "bad" days after infusion. If not, tomorrow back at work should be pretty interesting. I was pretty tired the whole day today but popped an anti-nausea pill everytime I started feeling sick and they worked quite well.
For those of you who are wondering, hair is still there. Typically starts coming off anywhere between days 10 and 16 of first infusion. I'd rather not wait for it to slowly fall out on my pillow or clog up the shower drain so we'll be having a head shaving party sometime this week at my house. I think I've even gotten Elijah willing to get it started.
There's a bunch of things I've been wanting to get down on the blog. Questions I don't want to have to answer over and over again like how this all got started, how they found the lump, what is myositis, what is the dark corner in the back of your head. It will all get down here eventually, but not tonight. Tonight I'm tired and hopefully have taken enough drugs to knock me out cold until exactly 5 am.
For those of you who are wondering, hair is still there. Typically starts coming off anywhere between days 10 and 16 of first infusion. I'd rather not wait for it to slowly fall out on my pillow or clog up the shower drain so we'll be having a head shaving party sometime this week at my house. I think I've even gotten Elijah willing to get it started.
There's a bunch of things I've been wanting to get down on the blog. Questions I don't want to have to answer over and over again like how this all got started, how they found the lump, what is myositis, what is the dark corner in the back of your head. It will all get down here eventually, but not tonight. Tonight I'm tired and hopefully have taken enough drugs to knock me out cold until exactly 5 am.
Saturday, November 13, 2010
One down, seven to go.
So results of the last CT scan were done to check out the abnormality on my spine and/or lung. It is nothing, so onward and upward from here out.
Most everything I've done so far since the first day of dignosis has been for a clinical study I participated in. I have had a bunch of tests done, a needle biospy of the tumor and breast MRI. Then I start taking increased dosages of a drug called Valproic Acid (nice name isn't it?) over a regimin of ten days with blood work interspersed to see how the drug was affecting the cancer cells. After I finished with the drugs, I had another needle biospy and breast MRI and then was done with the study. Woohooo! Now I finally get to start my own treatment. (A different guy called me a couple of days ago to tell me that I was eligible to participate in another study. I told him I was all studied out. That last breast MRI tapped me of all altruistic juices for a while.)
So, that was the morning part of the day yesterday. In the afternoon I meet with my oncologist and little group of nurses to go over the chemo schedule, the types of chemo drugs, what to expect in the way of side affects, what to do to help alleviate certain side affects etc. They loaded me up with prescriptions and went over in great detail how and when I should take them.
Then Neil and I headed over to the infusion room. By that time I was exhausted. It was about 4 pm. They got my "suite" all ready and then brought me in to choose my easy chair, covered me up with warm blankets and got me something to drink. Neil went up to our new favorite bistro to bring us down a sandwich since we hadn't eaten since breakfast. About 5:45, my little buzzer started going off and they unhooked me and let me go home. I slept like the dead last night. Apparently they are pretty free with the sleepy drugs. I think I'm going to love my infusion team
We got home about 7 and found that my angel neice and her husband had picked up my kids and had them all fed (thanks to a wonderful neighbor who had brought over dinner). Thank you Meagan, Zeb and the Deckers.
Today I went back over for my Neulasta. The day after each chemo treatment I will go back for my injection of this drug. Since the chemo drugs are killing off a lot of white blood cells, and they are the cells that help keep you from getting sick, the purpose of the Neulasta is to stimulate the bone cells where the white bood cells are made to get them to produce more than the usual amount of white blood cells. Hopefully this will keep risk of infection in the midst of flu season to a minimum. But, I think I am becoming a bit of a germophobe regardless. Lily will probaby not be making her official entrance to the nursery until next spring, my church attendence will be sporadic at best, and at work, I may just become somewhat of an office hermit.... for the second time this year.
Well, that's it for today. I've been told that the worst of each chemo treatment comes within the first or second day after chemo so we'll just have to wait out tomorrow to get a good idea on how this particular drug cocktail is going to go over the next couple of months. I feel better though knowing that I'm on my way. The unknown and anticipation is always worse for me. So one treatment down, seven more to go!!
Most everything I've done so far since the first day of dignosis has been for a clinical study I participated in. I have had a bunch of tests done, a needle biospy of the tumor and breast MRI. Then I start taking increased dosages of a drug called Valproic Acid (nice name isn't it?) over a regimin of ten days with blood work interspersed to see how the drug was affecting the cancer cells. After I finished with the drugs, I had another needle biospy and breast MRI and then was done with the study. Woohooo! Now I finally get to start my own treatment. (A different guy called me a couple of days ago to tell me that I was eligible to participate in another study. I told him I was all studied out. That last breast MRI tapped me of all altruistic juices for a while.)
So, that was the morning part of the day yesterday. In the afternoon I meet with my oncologist and little group of nurses to go over the chemo schedule, the types of chemo drugs, what to expect in the way of side affects, what to do to help alleviate certain side affects etc. They loaded me up with prescriptions and went over in great detail how and when I should take them.
Then Neil and I headed over to the infusion room. By that time I was exhausted. It was about 4 pm. They got my "suite" all ready and then brought me in to choose my easy chair, covered me up with warm blankets and got me something to drink. Neil went up to our new favorite bistro to bring us down a sandwich since we hadn't eaten since breakfast. About 5:45, my little buzzer started going off and they unhooked me and let me go home. I slept like the dead last night. Apparently they are pretty free with the sleepy drugs. I think I'm going to love my infusion team
We got home about 7 and found that my angel neice and her husband had picked up my kids and had them all fed (thanks to a wonderful neighbor who had brought over dinner). Thank you Meagan, Zeb and the Deckers.
Today I went back over for my Neulasta. The day after each chemo treatment I will go back for my injection of this drug. Since the chemo drugs are killing off a lot of white blood cells, and they are the cells that help keep you from getting sick, the purpose of the Neulasta is to stimulate the bone cells where the white bood cells are made to get them to produce more than the usual amount of white blood cells. Hopefully this will keep risk of infection in the midst of flu season to a minimum. But, I think I am becoming a bit of a germophobe regardless. Lily will probaby not be making her official entrance to the nursery until next spring, my church attendence will be sporadic at best, and at work, I may just become somewhat of an office hermit.... for the second time this year.
Well, that's it for today. I've been told that the worst of each chemo treatment comes within the first or second day after chemo so we'll just have to wait out tomorrow to get a good idea on how this particular drug cocktail is going to go over the next couple of months. I feel better though knowing that I'm on my way. The unknown and anticipation is always worse for me. So one treatment down, seven more to go!!
Tuesday, November 9, 2010
"We're pretty certain it is nothing to worry about."
Got results back from the 2nd needle biopsy and bone scan. Needle biopsy I didn't care too much about, it was just to give them the information they needed to confirm that I really was an eligible candidate for their research study. It was the bone scan that I was particularly interested in. I went up to Huntsman yesterday for more bloodwork and checked to see what the results said. Remember, with that scan the radioactive agent will accumulate around any fast growing or abnormal cells. The radiologist report says, "Mild asymmetric uptake of tracer involving the L4 vertebral body." That's just fancy doctor speak for the radioactive stuff was having a little party on the lower part of my spine OR part of my left lung, they're not sure exactly. That's not necessarily good. We want them to be a little more anti-social, more evenly distributed throughout the body. So, they thought we should make sure we know what that is before we start chemo. I am NOT putting off chemo so I'm going up tomorrow for another CT scan to see if they can get more information on the radioactive party at the lower end of my spine. They should have the results by Thursday so I can go ahead with chemo on Friday.
When my nurse told me about the scan results she said, "We're pretty certain it is nothing to worry about." Well, by my count, I've already heard that three times in the last several months and yet here I am, undergoing every test known to man about to start chemo therapy in a few days. I think she was a little confused when I started to laugh.
When my nurse told me about the scan results she said, "We're pretty certain it is nothing to worry about." Well, by my count, I've already heard that three times in the last several months and yet here I am, undergoing every test known to man about to start chemo therapy in a few days. I think she was a little confused when I started to laugh.
Wednesday, November 3, 2010
I'm radioactive!
Today was the bone scan. Early this morning I was injected with the radioactive agent and let loose to roam throughout the hospital while it circulated. I was told to drink tons of water to flush it out of my bladder. I guess if you let even small amounts of radioactive chemicals sit in your bladder, that can be bad. Go figure... Neil and I hung out in the Cancer Wellness Center and I made arrangements to meet with a dietician during my first chemo treatment. She's going to help with with food ideas that will help me alleviate chemo side effects.
While we had time to burn I also contacted my insurance company to ask a few questions about anything that needed to be preauthorized, coverage, etc. They assigned me to a nurse who was going to follow my treatment and act as my consultant as I was arranging treatment, working with providers and organizing bills and claims. I love my insurance agency. Really. Love.
Next was the breast MRI. If any of you have been in an MRI machine you'll know how fun it can be, but this time I was lying on my stomach with the girls hanging through two little holes in the bed thing. Well, really they were actually MEDIUM sized holes. (As I'm writing this, I'm remembering that I gave this blog address to my bishop and relief society president to distribute to friends in the ward....hmmm. Oh well.) So anyway, I was expecting the unusual MRI position. What I wasn't expecting was to walk into the MRI room and see three big guys standing there waiting for me and I'm thinking, "Oh come on!!!! You couldn't find one woman in the whole radiology department to do this???" I guess not. I've lost all sense of dignity.
So that's it for a few days. After I get the results from the last needle biopsy I will start the two week research trial for the new drug and then be ready to start chemo on the 12th of this month.
While we had time to burn I also contacted my insurance company to ask a few questions about anything that needed to be preauthorized, coverage, etc. They assigned me to a nurse who was going to follow my treatment and act as my consultant as I was arranging treatment, working with providers and organizing bills and claims. I love my insurance agency. Really. Love.
Next was the breast MRI. If any of you have been in an MRI machine you'll know how fun it can be, but this time I was lying on my stomach with the girls hanging through two little holes in the bed thing. Well, really they were actually MEDIUM sized holes. (As I'm writing this, I'm remembering that I gave this blog address to my bishop and relief society president to distribute to friends in the ward....hmmm. Oh well.) So anyway, I was expecting the unusual MRI position. What I wasn't expecting was to walk into the MRI room and see three big guys standing there waiting for me and I'm thinking, "Oh come on!!!! You couldn't find one woman in the whole radiology department to do this???" I guess not. I've lost all sense of dignity.
So that's it for a few days. After I get the results from the last needle biopsy I will start the two week research trial for the new drug and then be ready to start chemo on the 12th of this month.
Tuesday, November 2, 2010
Anethstesia is my friend.
Well, today was a fun day. Bright and early we headed up to the University Hospital for a little surgery. They inserted a Port-a-Cath in my chest just under the skin above my heart. They will use this port for my chemo treatments. I opted for this rather than to have them insert an IV every time I had treatment. The IV in the hand was such a hideous experience during both of my c-section surgeries. It took the nurses 10-12 pokes before they got it in. By the time they actually found the vein the towels were soaked with blood and there was a puddle on the floor. Literally. At least with Elijah there was. Anyway so that is why I went for the port. However, the little anesthesiologist that inserted my pre-operative IV (who looked like she was 16) did a beautiful job. I barely even felt it. Could of hugged her right there. The biggest difference was that she took a tiny little needle and injected an even tinier bit of numbing agent so I didn't feel the big needle even go in. Brilliant. AND, she got it on the FIRST POKE!!! So, why don't they do that when you have a c-section? After she was done, I was starting to second guess the whole port decision but... oh well. We did it. I officially have a breast implant. Well kind of. The surgery went well. They didn't put me completely out. They gave me just enough of the sleepy drugs to make me happy about the fact they were cutting me open and inserting a foreign device in my chest. I love anethstesia.
After the little surgical experience we went and had lunch at the hosptial restaurant. Just so you know, the Huntsman Cancer Hospital has a pretty hip little bistro. Neil had the stroganoff and I opted for the stir fry. Very tasty. And speaking food, the University Hospital has a pretty decent cafeteria. I'm a regular patron. I'm addicted to their brownies.
Okay, so after lunch we had a little blood drawn (and by little, I mean about 3 quarts), and went off for my needle biopsy. I'm participating in a clinical study. They're doing research on a particular medication (normally used to treat seizure patients) to see how it changes the cancer cells. So as part of that, I got to throw in a few extra needle biopsies and blood tests, yadda, yadda. The needle biopsy is all sorts of fun. This was my second. One more to go after a couple weeks on the study drug. The doctor's name who does the biopsy is Joanna. We're good friends now.
So that was it for today. Oh, in between our lovely little medical procedures, we meandered over to the Cancer Learning Center. I couldn't resist. I'm a librarian. I had to check out the cancer library. We found a couple of children's books about kids whose moms have cancer and used them as a way of trying to help Elijah understand a little of what was going on. I think it hit him this time. He got a little weepy. The first time we talked to him about it, he just said, "Yay! We get to get your wig out again!" Hmmmm. Either he's coping just fine or we need to do a little more explaining.....
So tomorrow we will be up at the hospital again for most of the day (yay, brownies!!). I'll start with a bone scan. For those of you who aren't familiar with those (and I truly hope you're not, at least by experience), they inject a small amount of radioactive chemicals into your blood stream. You hang out for a couple of hours (hmm, maybe neil and I will have time for a free acupuncture session and the Wellness Center) and then they do a full body scan after the chemicals have had time to completely distribute themselves throughout your body. The chemicals attach themselves to unusually fast growing cells (cancer cells). On the film, those portions appear as bright spots, so they can tell if there is cancer in other places in the body. They will be focusing on the bones.
After that, we have a breast MRI. Stay tuned. I'm sure I'll have a few stories after that one.
After the little surgical experience we went and had lunch at the hosptial restaurant. Just so you know, the Huntsman Cancer Hospital has a pretty hip little bistro. Neil had the stroganoff and I opted for the stir fry. Very tasty. And speaking food, the University Hospital has a pretty decent cafeteria. I'm a regular patron. I'm addicted to their brownies.
Okay, so after lunch we had a little blood drawn (and by little, I mean about 3 quarts), and went off for my needle biopsy. I'm participating in a clinical study. They're doing research on a particular medication (normally used to treat seizure patients) to see how it changes the cancer cells. So as part of that, I got to throw in a few extra needle biopsies and blood tests, yadda, yadda. The needle biopsy is all sorts of fun. This was my second. One more to go after a couple weeks on the study drug. The doctor's name who does the biopsy is Joanna. We're good friends now.
So that was it for today. Oh, in between our lovely little medical procedures, we meandered over to the Cancer Learning Center. I couldn't resist. I'm a librarian. I had to check out the cancer library. We found a couple of children's books about kids whose moms have cancer and used them as a way of trying to help Elijah understand a little of what was going on. I think it hit him this time. He got a little weepy. The first time we talked to him about it, he just said, "Yay! We get to get your wig out again!" Hmmmm. Either he's coping just fine or we need to do a little more explaining.....
So tomorrow we will be up at the hospital again for most of the day (yay, brownies!!). I'll start with a bone scan. For those of you who aren't familiar with those (and I truly hope you're not, at least by experience), they inject a small amount of radioactive chemicals into your blood stream. You hang out for a couple of hours (hmm, maybe neil and I will have time for a free acupuncture session and the Wellness Center) and then they do a full body scan after the chemicals have had time to completely distribute themselves throughout your body. The chemicals attach themselves to unusually fast growing cells (cancer cells). On the film, those portions appear as bright spots, so they can tell if there is cancer in other places in the body. They will be focusing on the bones.
After that, we have a breast MRI. Stay tuned. I'm sure I'll have a few stories after that one.
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