Well, I guess it is the official beginning of nasty side effect season here at my house. Saturday night, my tongue started feeling like a big sore throat. I honestly don’t know a better way to describe it. What is really amazing is it doesn’t really look too bad – kind of like there are now a couple of landing strip lights on both sides of the tongue. I know I’ve been having a hard time finding things that I can tolerate to eat maybe cancer is trying to help me to remember - Hello this is where food goes!
It also signaled a perfect time for another good cancer cry. This is real… this is happening… you can feel good for few days but I’m still here and the battle is going to be a fierce one. Nasty red stuff (Adriamycian) thanks for the mouth sores – I know you are coming for my hair. I guess I better start making some real plans; so, today I registered for the Look Good, Feel Better class provided by our local American Cancer Society.
Sunday, we took the kids to the mall for some back to school shopping. I grabbed my 20% coupon for Bed, Bath & Beyond and splurged on a beautiful satin pillowcase. I hear from the cancer blogs that it helps when your hair starts falling out. Back to School shopping is just about as much fun with cancer as it is without cancer. I went through 3 bottles of water keeping my sore mouth hydrated and then was happy to see that sore tongue or not I can still tolerate Olga's. The snackers weren't the best but my normal creme of broccoli soup with spinach pie was a nice treat, even if I did leave most of the phyllo behind.
Now it is Monday and life as normal is a wonderful treat. Zach to a Brandon Tennis Match, Shelby to volleyball practice and all of us trying to stay cool on a hot summer day. What a perfect reason for more ice chips!
Monday, August 30, 2010
Saturday, August 28, 2010
The 2010 CRIM: A Zombie finishes strong!
I had been really looking forward to running in this year's Crim 10 mile race. I ran the Crim for the first time last year and had a great time. Plus, this year my tempo and hill paces had been much faster than last summer so I was crossing my fingers for a personal best time. Then cancer called and training stopped. Crim fever was strong in Flint and I had been spending a lot of time there for tests and treatment. It was like rubbing salt in an open wound. I wanted my Crim Race!
Thursday during treatment I was whining and complaining about missing the race. One of the nurses encouraged me to go ahead and participate. She explained that my white count would still be good this weekend and if I felt up to it I should just go and run. She planted a seed. Why was I letting cancer call all the shots? I am the one living this life. What made me think I couldn't run the race if I couldn't run my best? I like to run and I know I'm never going to be the fastest. Sure I like to challenge myself but really it is just about the run.
The side effects from Chemo improved on Friday, possibly due to the shot of Neulasta to help stimulate the bone marrow to produce more white blood cells. I actually felt well enough to attend Shelby's first marching band football season performance. So the race was on.
My friend Laura had been having a difficult time training this summer. She wasn't happy with it and had been thinking about being a no show for race day. Well guess what, now she was going to be my running buddy. Despite the normal craziness of starting a race with 10,000 runners, we found each other shortly before crossing the start line. I'm pretty sure it was another one of those "God Things" either that or Laura is just a hard person not to miss ;-)
As I ran, I remembered learning that cancer doesn't like oxygen. So with each deep breath I envisioned the oxygen taking the powerful R-Chop Zombies to all the little spots where the Ninja cancers were hiding. Cancers cells were being destroyed with each breath.
At about the halfway point, we were doing quite well, all things considered. Running at about a 11.5 minute mile pace, when Laura hit the wall. She wasn't happy about holding me back but I tried to tell her it wouldn't hurt me a bit to just hang back and enjoy the run. Finally, she convinced me to just keep my pace and run. Well, that didn't last long. Maybe a mile more and my IT band decided to remind me that it likes a brace sometimes for a long run. I had worn one last year for my long runs but hadn't made it past 9 miles in my training runs so honestly I never thought about it. So I found a good spot off course to stretch and along comes Laura. She is looking better and I'm running a little like a Zombie, you know how they always seem to have one limp leg they drag behind them.
So we walked more than we ran those last 3 miles but we enjoyed every minute of it. At the back of the pack, the people talk and laugh and encourage each other. Not to mention, you can be passed by a woman dressed like wonder woman and man as Mr. Incredible, that definitely put a smile on my face. The best part after 2:24:39, we crossed the finish line.
Thursday during treatment I was whining and complaining about missing the race. One of the nurses encouraged me to go ahead and participate. She explained that my white count would still be good this weekend and if I felt up to it I should just go and run. She planted a seed. Why was I letting cancer call all the shots? I am the one living this life. What made me think I couldn't run the race if I couldn't run my best? I like to run and I know I'm never going to be the fastest. Sure I like to challenge myself but really it is just about the run.
The side effects from Chemo improved on Friday, possibly due to the shot of Neulasta to help stimulate the bone marrow to produce more white blood cells. I actually felt well enough to attend Shelby's first marching band football season performance. So the race was on.
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| My shirt for the race |
As I ran, I remembered learning that cancer doesn't like oxygen. So with each deep breath I envisioned the oxygen taking the powerful R-Chop Zombies to all the little spots where the Ninja cancers were hiding. Cancers cells were being destroyed with each breath.
At about the halfway point, we were doing quite well, all things considered. Running at about a 11.5 minute mile pace, when Laura hit the wall. She wasn't happy about holding me back but I tried to tell her it wouldn't hurt me a bit to just hang back and enjoy the run. Finally, she convinced me to just keep my pace and run. Well, that didn't last long. Maybe a mile more and my IT band decided to remind me that it likes a brace sometimes for a long run. I had worn one last year for my long runs but hadn't made it past 9 miles in my training runs so honestly I never thought about it. So I found a good spot off course to stretch and along comes Laura. She is looking better and I'm running a little like a Zombie, you know how they always seem to have one limp leg they drag behind them.
So we walked more than we ran those last 3 miles but we enjoyed every minute of it. At the back of the pack, the people talk and laugh and encourage each other. Not to mention, you can be passed by a woman dressed like wonder woman and man as Mr. Incredible, that definitely put a smile on my face. The best part after 2:24:39, we crossed the finish line.
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| The Crim Bricks Finish Line! |
The medal is nice but knowing that ninja cancer cells were destroyed in those 10 miles is even better!
Thursday, August 26, 2010
A Successful Round 1 of R-CHOP
What a long day at the cancer center. 8:50am-5:15pm is really too long to be reclining even if you are on a beautiful beach in the tropics.
I was all finished with the Rituxan by about 3:30pm. When the angels in scrubs push, the next two you get a nice little time for talking to someone other than your hubby, Facebook, text, etc. Today, she pushed the red stuff first, Doxorubican (the H) and then the Oncovin (the O) and then I finished with the Cytoxan which seemed like a very slow drip but the nurses guaranteed me that the headache I had would only get much worse if they sped it up. Finally, at home I took my Prednisone, the P.
So now my army of zombies are not only super powered, they have an arsenal of weapons at their disposal. Guess what one thing zombies like to eat more than brains - Yep, it's nasty cancer cells, especially ones pretending to be ninjas. They will be victorious and even if it means I end up spending a small part of my life walking around looking like one of them - who cares! It sounds like a great excuse to visit the Zombie walk in Grand Rapids this year.
As for my reaction to Chemo - as I said before today has been a good day. Headache seems to be my biggest side effect. I have a little upset stomach this evening but I took an anti-nausea pill and am sipping tea. It could be from the Chemo or it could be a side effect of a DVR that decided not to tape Project Runway even though it was scheduled. Thank goodness, the Prednisone is keeping me awake.
Special thanks to all my chemo buddies today - Robin for the yummy food and the hands on prayer time; Jean and Patty for help with driving Zach; Laura for being the parent on call today; my family for helping when needed and all of you for the prayers, light and love sent my way. It was felt.
Today was a great Chemo Day. They started me off with Benadryl and Zantac. Next came a nice big dose of the wonder drug for nausea, Emend. Then, the biggie was started, the Rituxan. For my cancer attack visualization, this is the drug that wakes my army of zombies and prepares them to do battle with the ninjas. I've had this argument with Shelby and Zach and maybe even a couple of their friends. They say zombies cannot win against ninjas. Oh yes they can, all that they need is the super power that Rituxan gives them. Then watch out!
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| True Blood requires a nice corner chair :-) |
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| Cancer buddy/Cabana boy |
No adverse reactions to the Rituxan. The nurses only slowed it down once because I was having some back discomfort. At that point, I had been in the chair for over 4 hours. My hunky cancer buddy, Gary, found me a little pillow perfect for the small of my back and problem solved. Full speed ahead. He did an excellent job as cancer buddy and was even able to get a little work done. An hour long conference call in the cancer center isn't nearly as bad as you'd think. Worst part for him was the seating. My chair was definitely better.
So now my army of zombies are not only super powered, they have an arsenal of weapons at their disposal. Guess what one thing zombies like to eat more than brains - Yep, it's nasty cancer cells, especially ones pretending to be ninjas. They will be victorious and even if it means I end up spending a small part of my life walking around looking like one of them - who cares! It sounds like a great excuse to visit the Zombie walk in Grand Rapids this year.
As for my reaction to Chemo - as I said before today has been a good day. Headache seems to be my biggest side effect. I have a little upset stomach this evening but I took an anti-nausea pill and am sipping tea. It could be from the Chemo or it could be a side effect of a DVR that decided not to tape Project Runway even though it was scheduled. Thank goodness, the Prednisone is keeping me awake.
Special thanks to all my chemo buddies today - Robin for the yummy food and the hands on prayer time; Jean and Patty for help with driving Zach; Laura for being the parent on call today; my family for helping when needed and all of you for the prayers, light and love sent my way. It was felt.
Cancer Beware!
Wednesday, August 25, 2010
My treatment: R-CHOP
Tomorrow morning I will start Chemo. My treatment is called R-CHOP. I think it sounds like a 70s kung fu movie with cheesy English voice overs. Which is actually probably appropriate because I've decided cancer is like a Ninja. Oh so sneaky, you don't even see it coming. Give me Zombies any day. They are nice and slow. Hello! If you can't see them coming, it is your own fault. They are always moaning and probably stink like crazy since they are the undead. Sorry, a bit off topic I know but I love Zombies. Most of you already know that.
Drug Therapy Treatment R-Chop (courtesy of Leukemia and Lymphoma site)
Many drug combinations are used to treat NHL The drug choice depends on the type of NHL and the stage of treatment. A number of drug combinations include Rituxan - a monoclonal antibody therapy. Monoclonal antibody therapies kill certain types of cancer cells. They can cause side effects but do not cause many of the side effects caused by chemotherapy.
R-CHOP: Rituxan, cyclophosphamide, doxorubicin (hydroxydoxorubicin), Oncovin® (vincristine) and prednisone.
From what I understand from the wonderful chemo nurses, they will start with the Rituxan. It is administered very slowly due to some pretty nasty reactions that can occur the first time you receive it. It is because of the Rituxan that I will be at the cancer center pretty much all day. They push it slowly and carefully while doping you up on Bendryl and monitoring monitoring monitoring. The good news is that after the initial treatment of Rituxan subsequent treatment times will be cut in half.
I can't remember the exact timing of the next 3 drugs but I know that it isn't in the CHOP order.
C - Cytoxan it will take about 1.5 hours by IV and it's the one that requires me to drink a lot of water.
H- Doxorubicin (hydroxydoxorubicin) It's the red one and it is the reason I'm having a MUGA heart scan today. It can cause heart damage so they need a baseline heart function test to compare. Thank goodness, I've been running for almost 5 years now. Yeah! Strong heart! This is also the one that will more than likely be responsible for hair loss. I think they focus on the heart damage so when you see the Red you don't think stupid Doxorubicin you took my hair.
O-Oncovin It has its own set of side effects. I think mouth sores are the big one with this drug.
P- Prednisone - The steroids - this is the only one in pill form. I take it for 5 days following the IV chemo. I've dealt with prednisone in the past. It was part of my treatment for shingles and there was the experience of having a 4 year old on prednisone at WDW following a nasty asthma attack. Talk about crazy!
Dr. Black has also put me on Allopurinol because of my history with kidney stones and the involvement of my thyroid. It is a preventive measure to combat the levels of uric acid that can be produced from the dying cancer cells.
So now you all know about as much as me. I'm nervous about starting the first round but want to get this treatment started. The next blog entry will probably come from my recliner at the cancer treatment center. So please ignore typos, bad grammar and ramblings :-)
Drug Therapy Treatment R-Chop (courtesy of Leukemia and Lymphoma site)
Many drug combinations are used to treat NHL The drug choice depends on the type of NHL and the stage of treatment. A number of drug combinations include Rituxan - a monoclonal antibody therapy. Monoclonal antibody therapies kill certain types of cancer cells. They can cause side effects but do not cause many of the side effects caused by chemotherapy.
R-CHOP: Rituxan, cyclophosphamide, doxorubicin (hydroxydoxorubicin), Oncovin® (vincristine) and prednisone.
From what I understand from the wonderful chemo nurses, they will start with the Rituxan. It is administered very slowly due to some pretty nasty reactions that can occur the first time you receive it. It is because of the Rituxan that I will be at the cancer center pretty much all day. They push it slowly and carefully while doping you up on Bendryl and monitoring monitoring monitoring. The good news is that after the initial treatment of Rituxan subsequent treatment times will be cut in half.
I can't remember the exact timing of the next 3 drugs but I know that it isn't in the CHOP order.
C - Cytoxan it will take about 1.5 hours by IV and it's the one that requires me to drink a lot of water.
H- Doxorubicin (hydroxydoxorubicin) It's the red one and it is the reason I'm having a MUGA heart scan today. It can cause heart damage so they need a baseline heart function test to compare. Thank goodness, I've been running for almost 5 years now. Yeah! Strong heart! This is also the one that will more than likely be responsible for hair loss. I think they focus on the heart damage so when you see the Red you don't think stupid Doxorubicin you took my hair.
O-Oncovin It has its own set of side effects. I think mouth sores are the big one with this drug.
P- Prednisone - The steroids - this is the only one in pill form. I take it for 5 days following the IV chemo. I've dealt with prednisone in the past. It was part of my treatment for shingles and there was the experience of having a 4 year old on prednisone at WDW following a nasty asthma attack. Talk about crazy!
Dr. Black has also put me on Allopurinol because of my history with kidney stones and the involvement of my thyroid. It is a preventive measure to combat the levels of uric acid that can be produced from the dying cancer cells.
So now you all know about as much as me. I'm nervous about starting the first round but want to get this treatment started. The next blog entry will probably come from my recliner at the cancer treatment center. So please ignore typos, bad grammar and ramblings :-)
Tuesday, August 24, 2010
I should probably start looking both ways before crossing the street - darn buses!
August 23, 2010-After a calm relaxing Sunday, the medical journey began again Monday morning. First, life happened. Zach needed to be dropped off in Clarkston for a tennis tournament. I needed to be the one to do it. I guess it is no different than any cancer patient continuing to work during their treatment. Not only am I a mom but it is also my job. It is a choice that I have been blessed enough to make. It was a good morning. I was able to share my diagnosis with some of the other tennis moms and meet one of Shelby's all time favorite moms, who *God thing* has been coping with a mother with cancer herself.
So I may or may not have been speeding from Clarkston to Flint. Thankfully, it was still the morning commute and I never had to take the lead ;-) Gary was waiting in the parking lot of the cancer center and was happy to note that it was only 8 minutes from the plant. That is really going to be a blessing. We headed inside and guess what - More Paperwork. I'm sure this is the generic form I will see everytime I have an appointment with Dr. Black. The front is a huge list of yes or no questions about your current health. I loved the mental health questions toward the end. "How satisfied are you with your life?" Well, I was extremely satisfied until I got cancer. So the giggles are starting from the Duffs and then I flip the page over and at the top Chief Complaint Today? Now we are almost rolling on the floor, so I write PAPERWORK - oh yeah and Cancer. I wonder if anyone has ever been thrown out of the cancer center? I guess I'll find out when I start watching "True Blood" in the Chemo room.
Not too much chit chat with Dr. Black this morning. The test results are in and my bone marrow does not have lymphoma present. The PET Scan results show multiple hypermetabolic deposits above and below the diaphragm. The conclusion is Stage IV Lymphoma. Dr. Black's plan for treatment is 6 cycles of R-CHOP spaced 3 weeks apart with a repeat of the PET Scan after my 4th cycle. I will do a blog entry on what exactly R-CHOP is next.
Praise the Lord - I had to return to the tennis tournament. It really kept my mind in a good place while I tried to handle Stage IV. Even though I had read enough about Lymphoma to know that Staging isn't quite the same as with other cancers, it still knocked the wind out of me for a bit. At least, I know that there are lots of health benefits to a good cry. So I should be very healthy today. It also helped that I came across a blog of a man battling Stage IV Lymphoma who was cancer free after only 3 cycles. Now my focus is a cancer free Christmas.
So I may or may not have been speeding from Clarkston to Flint. Thankfully, it was still the morning commute and I never had to take the lead ;-) Gary was waiting in the parking lot of the cancer center and was happy to note that it was only 8 minutes from the plant. That is really going to be a blessing. We headed inside and guess what - More Paperwork. I'm sure this is the generic form I will see everytime I have an appointment with Dr. Black. The front is a huge list of yes or no questions about your current health. I loved the mental health questions toward the end. "How satisfied are you with your life?" Well, I was extremely satisfied until I got cancer. So the giggles are starting from the Duffs and then I flip the page over and at the top Chief Complaint Today? Now we are almost rolling on the floor, so I write PAPERWORK - oh yeah and Cancer. I wonder if anyone has ever been thrown out of the cancer center? I guess I'll find out when I start watching "True Blood" in the Chemo room.
Not too much chit chat with Dr. Black this morning. The test results are in and my bone marrow does not have lymphoma present. The PET Scan results show multiple hypermetabolic deposits above and below the diaphragm. The conclusion is Stage IV Lymphoma. Dr. Black's plan for treatment is 6 cycles of R-CHOP spaced 3 weeks apart with a repeat of the PET Scan after my 4th cycle. I will do a blog entry on what exactly R-CHOP is next.
Praise the Lord - I had to return to the tennis tournament. It really kept my mind in a good place while I tried to handle Stage IV. Even though I had read enough about Lymphoma to know that Staging isn't quite the same as with other cancers, it still knocked the wind out of me for a bit. At least, I know that there are lots of health benefits to a good cry. So I should be very healthy today. It also helped that I came across a blog of a man battling Stage IV Lymphoma who was cancer free after only 3 cycles. Now my focus is a cancer free Christmas.
Sunday, August 22, 2010
Lymphomaniac Weekend Update
Sport filled weekend for the Duff family. Thank the Lord. Zach and Gary spent Saturday in Romeo avoiding rain drops. Unfortunately, after many hours the tournament was finally called for rain and Zach only completed one full match in that long day. As for the Brandon Volleyball team, I think it is going to be a long season. But let me tell you after a spring full of Volleyball tournaments, kudos to the staff for running a well organized event.
You may have noticed I've added a widget or gadget (I'm still learning all the blog lingo) with one of my favorite songs. "God Speaking" by Mandisa (yes, the girl from American Idol). This song has really been on my mind this weekend. I just have had many of those God moments. Finding out strange coincidences of Zach's MST@MSU camp culminated in a cancer connection, a nice lady asking me for help with her windshield wipers at the gas station, an unexpected thank you, and kindness from acquaintances at just the right moment. I heard Him speaking this weekend.
The pain from the bilateral bone marrow biopsy improved a little each day. Although why the bandages had to be duct taped to such an extreme, I'll never know - "OUCH!!!!" I did have a revelation of sort - just another God speaking moment. I had been having a real hard time with acceptance. Just one of those pesky grief stages. Example, when I was at Rite Aid to pick a prescription for antibotics, I broke down when the tech informed me that all my prescriptions for chemo treatment were also ready. I knew it was coming I just really didn't want to think about it. I refused to take them. It is hard to accept the idea of Chemo and all of its effects when you feel great and healthy. All the tests and procedures really wore me out. I actually felt crappy and it was easier for me accept the fact that not only is the diagnosis real, the treatment is a fact.
You may have noticed I've added a widget or gadget (I'm still learning all the blog lingo) with one of my favorite songs. "God Speaking" by Mandisa (yes, the girl from American Idol). This song has really been on my mind this weekend. I just have had many of those God moments. Finding out strange coincidences of Zach's MST@MSU camp culminated in a cancer connection, a nice lady asking me for help with her windshield wipers at the gas station, an unexpected thank you, and kindness from acquaintances at just the right moment. I heard Him speaking this weekend.
The pain from the bilateral bone marrow biopsy improved a little each day. Although why the bandages had to be duct taped to such an extreme, I'll never know - "OUCH!!!!" I did have a revelation of sort - just another God speaking moment. I had been having a real hard time with acceptance. Just one of those pesky grief stages. Example, when I was at Rite Aid to pick a prescription for antibotics, I broke down when the tech informed me that all my prescriptions for chemo treatment were also ready. I knew it was coming I just really didn't want to think about it. I refused to take them. It is hard to accept the idea of Chemo and all of its effects when you feel great and healthy. All the tests and procedures really wore me out. I actually felt crappy and it was easier for me accept the fact that not only is the diagnosis real, the treatment is a fact.
Friday, August 20, 2010
"All the world's a stage" wonder what mine is?
The diagnosis of Non Hodgkin's Lymphoma is only the beginning. In order to determine the exact treatment needed, you have to be tested to determine the Lymphoma Stage.
Non-Hodgkin Lymphoma Stages
Stage I: Involvement of one lymph node group
Stage IE: Involvement of one area or organ other than the lymph nodes ("E" stands for "extranodal," meaning that NHL is found in an area or organ other than the lymph nodes or has spread to tissues beyond, but near, the major lymphatic areas) - We knew for sure that I was at least a IE because of the pathology of the Breast Mass but more likely a IIE since there was also a mass on my thyroid.
Stage II: Involvement of two or more lymph node groups on the same side of the diaphragm (a thin muscle below the lungs)
Stage IIE: Involvement of an area or organ other than the lymph nodes and of lymph nodes near that area or organ, and possibly including other lymph node groups on the same side of the diaphragm
Stage III: Involvement of lymph node groups on both sides of the diaphragm
Stage IIIE: Involvement of lymph node groups on both sides of the diaphragm and in an area or organ other than the lymph nodes
Stage IV: Involvement of one or more organs other than the lymph nodes and possibly of the lymph nodes.
Patients are also divided into either "A" or "B" categories.
"A" patients don't have fever, excessive sweating and weight loss.
"B" patients have fever, a lot of sweating and weight loss. I had none of these symptoms so I was an "A"
The tests I would be having to determine stage would be a PET Scan and a Bone Marrow Biopsy. Before testing could even begin, I decided to go ahead and get my preChemo haircut. Gary initially suggested it and then I found the same suggestion in the Chemo literature. My friend Lesley provided me with several hairstyle magazines and thankfully Amedae was able to get me in right away. I was thrilled with the result and it really lifted my spirits.
Non-Hodgkin Lymphoma Stages
Stage I: Involvement of one lymph node group
Stage IE: Involvement of one area or organ other than the lymph nodes ("E" stands for "extranodal," meaning that NHL is found in an area or organ other than the lymph nodes or has spread to tissues beyond, but near, the major lymphatic areas) - We knew for sure that I was at least a IE because of the pathology of the Breast Mass but more likely a IIE since there was also a mass on my thyroid.
Stage II: Involvement of two or more lymph node groups on the same side of the diaphragm (a thin muscle below the lungs)
Stage IIE: Involvement of an area or organ other than the lymph nodes and of lymph nodes near that area or organ, and possibly including other lymph node groups on the same side of the diaphragm
Stage III: Involvement of lymph node groups on both sides of the diaphragm
Stage IIIE: Involvement of lymph node groups on both sides of the diaphragm and in an area or organ other than the lymph nodes
Stage IV: Involvement of one or more organs other than the lymph nodes and possibly of the lymph nodes.
Patients are also divided into either "A" or "B" categories.
"A" patients don't have fever, excessive sweating and weight loss.
"B" patients have fever, a lot of sweating and weight loss. I had none of these symptoms so I was an "A"
The tests I would be having to determine stage would be a PET Scan and a Bone Marrow Biopsy. Before testing could even begin, I decided to go ahead and get my preChemo haircut. Gary initially suggested it and then I found the same suggestion in the Chemo literature. My friend Lesley provided me with several hairstyle magazines and thankfully Amedae was able to get me in right away. I was thrilled with the result and it really lifted my spirits.August 17, 2010 - PET Scan - The only bad part of this test was the timing. I was scheduled for 6:30 pm and it requires a 4-6 hour fast. It is one thing to deal with no food from midnight till your morning procedure but I was very hungry by the time I was brought back to the semi. I loved the fact that I was having a test that was so radioactive they don't even allow you in the building. They send you out back into a semi trailer. What a PET Scan does is sends sugar with a radioactive marker into your body. Cancer cells love sugar and so they have a real party with it trying to eat as much as they can. After you are injected with the radioactive solution, you sit for about a half hour in the semi and then I guess you are safe enough to enter to the building because then you sit inside for another half and hour. By this point the cancer cells have gorged themselves and you head back to the semi for a series of scans. This machine is nice and quiet. Not nearly as bad as a MRI machine. It took about 20 minutes for them to get all my scans. I guess it depends on your size. All and all not a bad experience. Plus, I could stop at Arby's on my way home.
August 18, 2010 - More fasting. No food or drinks after midnight. I should probably mention here that I am a breakfast eater. I know there are people that don't but I am always hungry when I wake up. Not to mention the lack of my morning coffee, I was pretty cranky when my friend Jean picked me up at 6:15am to head to the hospital for my Medi Port insertion. Zach was having his first Varisity tennis outing and we really wanted him to have a parent there.
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| Before surgery |
A Medi Port is an internally installed accessible device that is typically used for patients that need long term IV access. It is surgically placed, usually by creating a false pocket somewhere in the upper chest wall under the skin on top of the ribs. An internal tube is then attached to a nipple on the device, with the other end of the tube then sewn into a nearby large vein (usually one of the subclavians). The best part of it is no more IV starts for me!
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| After Port insertion |
I am smiling after the port insertion because they finally brought me food. I had a couple yummy muffins and a cranberry juice. We were at the hospital from 7 am till about 11 am. The procedure itself took about an hour and half. It wasn't really painful more strange than anything. It felt like maybe a little thread making its way around your veins. Just strange. When I got home and the sedation wore off it, was painful but more like a dull ache. Jean dropped me off and I slept for a few hours and then woke up with a spliting headache. Oh yes, no coffee today it all made sense so I made myself a giant iced latte and took Duffy for a walk. By the time we got back, I felt much better. Well enough to attend the kids fall sports parenting meeting. Life as normal feels so good right now. One of the other tennis parents had just finished her chemo and it was nice to talk to a chemo sister. But probably the best part of the evening was all the compliments for my new haircut. I'm going to enjoy this hairdo as long as I can!
August 19, 2010 - Bone Marrow Biopsy day and another morning of fasting. Cranky may not be a strong enough word. Gary is my cancer buddy today and it is such a blessing that Shelby now has her license because she is being a really big help by getting Zach to tennis practice bright and early. We are at the hospital at 7 am. Today's procedure is not in the outpatient center but upstairs in the general cancer procedure area. Lots of great nurses today. I really felt cared for and one of the nurses even ran to get me information on a house cleaning service for women undergoing chemo: talk about above and beyond the call of duty. The nurses were able to access my mediport so not pokes for me. The twilight sedation today seemed much stronger than yesterday. I am guessing that is a good thing. Gary and I were home by 10:15am but I could barely walk myself up to bed. My bone marrow biopsy was bilateral which means I really can't get comfortable on either side. I understand that moving helps and have been trying to fit in little periods of walking.
By evening, I still felt lousy which unfortunately meant I'd be missing Shelby's first volleyball scrimmage of the year. I guess it was a good thing I decided to stay home because by 7pm I had a fever and chills. A call to the doctor's service and now I had to head to the cancer center bright and early the next morning for some blood cultures. There goes my chance for a doctor and test free day this week. Bah Humbug!
August 23, 2010 - My next appointment with Dr. Black. All the staging test results should be in and we will be able to get the plan for treatment.
Thursday, August 19, 2010
Telling Loved Ones: The Hardest Part
When you've been hit by a bus, the last thing you want to do is get behind the wheel of that bus and drive around looking for all of your loved ones. The first day I was so very emotional that I was terrified to say the diagnosis out loud. I sent my best friend Lisa a message on Facebook because I knew that if I had to talk to her on the phone I would start crying and might not be able to stop. Heck, I cried typing the message.
Luckily, while walking Duffy I ran into my friend and neighbor, Lesley. She had recently been a great cancer buddy for one of her friends and I knew she could handle the news. It felt very good to talk about it with her. I realized at that point that I really would feel much better if I could talk about my diagnosis as much as possible.
My first phone call was to my cousin, Jenni (she's the one that came up with the name Lymphomaniac). Jenni is an amazing, strong, and smart woman. But when I first called her, I chickened out and hung up the phone. Moments later I had a text from her wondering if I had butt called her. Well, I saw that as a sign I really should open up to her. We've been there for each other through many huge life events and it seemed right that she should be call #1. After finishing the call I felt much better, she really could make a living as a life coach.
Call #2 was to an old family friend who had battled Hodgkin's Lymphoma. Thanks Arnie for all the practical advice and all the great funny cancer stories.
All the talking was making me feel much better but I knew that I would need a lot of help dealing with the reality of being a cancer patient. I'm lucky that years ago I underwent some excellent talk therapy with an amazing therapist. Thank goodness we have unlimited long distance to Canada. Now I can access her for phone sessions and maybe if I ever figure out all the bells and whistles of my computer we could do Skype therapy. Just for random or not random viewers let me just really stress my belief in therapy. If you are depressed, please seek help. I battled depression for years and talk therapy really changed my life.
You can all probably imagine that telling the kids was making me extremely anxious. In "Jaws" style, I was thinking "We're going to need a bigger Xanax!" We had a family celebration dinner planned to celebrate their success in fall sports tryouts. Both kids made Varsity and we needed to celebrate. That was Friday night. When we got home that night, I had my biggest breakdown yet. I want nothing but the best for my kids and to know that I was going to be the cause of heartache for them breaks my heart. I had a really good cry, did the it isn't fair pitty party, and wished it was any time of the year but Fall because we have Tennis, Volleyball and Marching Band. It really was very similar to the "Monk" episode where Adrian is cycling through the stages of grief only maybe not that fast.
August 14, 2010 - Telling the kids was one of the hardest things I've ever experienced. But as difficult as it was, the relief was almost immediate. Both kids took it as well as can be expected. I'm sure it is because they are such smart and strong kids. I could brag about them from sunrise to sunset and it would all be well deserved.
The next big hurtle would be telling my mom. Just another inconvenience of living away from family. Plus, she had a triple bypass several years ago and lives alone. I sought the advice of my Aunt Jane and my baby brother and we all agreed that Mom's best friend Jackie would be the right person to contact. Unfortunately, Jackie was out of town for the weekend. So I took the weekend off from worrying and enjoyed a nice run on Sunday. My friend Lorrie sent me a text in the afternoon to see if the results were back. So we had a nice long bad news phone call. Here's a shout out to nurses everywhere. I'm just saying everyone needs at least one good friend that is a nurse: the more, the better. Though our discussion I was able to really process the specifics of my diagnosis and the possible treatment. It really helped me move closer toward acceptance.
August 16, 2010 - Breakfast with my good friend, Jean. Telling friends face to face is much easier than by phone, email, text etc. I think it is because you can see the love in their face and it calms you. I even enjoyed the breakfast.
I reached Jackie and she headed to mom's house to be with her after my phone call. This family has always been there for us and Jackie did it again. We are blessed to have their family in our lives.
Finally, the telling was done. Now, I needed to prepare myself for all the tests that I would need to determine the stage the lymphoma.
Luckily, while walking Duffy I ran into my friend and neighbor, Lesley. She had recently been a great cancer buddy for one of her friends and I knew she could handle the news. It felt very good to talk about it with her. I realized at that point that I really would feel much better if I could talk about my diagnosis as much as possible.
My first phone call was to my cousin, Jenni (she's the one that came up with the name Lymphomaniac). Jenni is an amazing, strong, and smart woman. But when I first called her, I chickened out and hung up the phone. Moments later I had a text from her wondering if I had butt called her. Well, I saw that as a sign I really should open up to her. We've been there for each other through many huge life events and it seemed right that she should be call #1. After finishing the call I felt much better, she really could make a living as a life coach.
Call #2 was to an old family friend who had battled Hodgkin's Lymphoma. Thanks Arnie for all the practical advice and all the great funny cancer stories.
All the talking was making me feel much better but I knew that I would need a lot of help dealing with the reality of being a cancer patient. I'm lucky that years ago I underwent some excellent talk therapy with an amazing therapist. Thank goodness we have unlimited long distance to Canada. Now I can access her for phone sessions and maybe if I ever figure out all the bells and whistles of my computer we could do Skype therapy. Just for random or not random viewers let me just really stress my belief in therapy. If you are depressed, please seek help. I battled depression for years and talk therapy really changed my life.
You can all probably imagine that telling the kids was making me extremely anxious. In "Jaws" style, I was thinking "We're going to need a bigger Xanax!" We had a family celebration dinner planned to celebrate their success in fall sports tryouts. Both kids made Varsity and we needed to celebrate. That was Friday night. When we got home that night, I had my biggest breakdown yet. I want nothing but the best for my kids and to know that I was going to be the cause of heartache for them breaks my heart. I had a really good cry, did the it isn't fair pitty party, and wished it was any time of the year but Fall because we have Tennis, Volleyball and Marching Band. It really was very similar to the "Monk" episode where Adrian is cycling through the stages of grief only maybe not that fast.
August 14, 2010 - Telling the kids was one of the hardest things I've ever experienced. But as difficult as it was, the relief was almost immediate. Both kids took it as well as can be expected. I'm sure it is because they are such smart and strong kids. I could brag about them from sunrise to sunset and it would all be well deserved.
The next big hurtle would be telling my mom. Just another inconvenience of living away from family. Plus, she had a triple bypass several years ago and lives alone. I sought the advice of my Aunt Jane and my baby brother and we all agreed that Mom's best friend Jackie would be the right person to contact. Unfortunately, Jackie was out of town for the weekend. So I took the weekend off from worrying and enjoyed a nice run on Sunday. My friend Lorrie sent me a text in the afternoon to see if the results were back. So we had a nice long bad news phone call. Here's a shout out to nurses everywhere. I'm just saying everyone needs at least one good friend that is a nurse: the more, the better. Though our discussion I was able to really process the specifics of my diagnosis and the possible treatment. It really helped me move closer toward acceptance.
August 16, 2010 - Breakfast with my good friend, Jean. Telling friends face to face is much easier than by phone, email, text etc. I think it is because you can see the love in their face and it calms you. I even enjoyed the breakfast.
I reached Jackie and she headed to mom's house to be with her after my phone call. This family has always been there for us and Jackie did it again. We are blessed to have their family in our lives.
Finally, the telling was done. Now, I needed to prepare myself for all the tests that I would need to determine the stage the lymphoma.
Wednesday, August 18, 2010
The bus that hit me: B Cell Lymphoma
You know the saying "You could get hit by a bus tomorrow." Well that is pretty much how I felt. The phone call actually knocked the wind out of me. I headed back to the family and our big comfy couch. I'm not even sure if I can tell you how that episode of "Covert Affairs" ended. My head was spinning. Gary was trying to figure from my expression what the news had been. We had been hoping and praying for a call saying "It's not breast cancer." I didn't even really know what B Cell Lymphoma was but Dr. Gold also told me that I wouldn't need a surgeon because Lymphoma responds well to drug therapy and I knew what that meant CHEMO.
Thankfully, that night was the Finale of "So You Think You Can Dance" and I'm a huge fan. So big I can tell you that Lauren Sanchez was the first host of SYTYCD. Just a sign that God is always there to help you in times of need. I was needing and SYTYCD was helping. First off, a huge smile when I noticed that Neil Patrick Harris was in the audience. If NPH is in anything, I will watch it. He is a genius. It was nice to lose myself for awhile in the best of the best from the season. It also gave me the opportunity to shed a few tears. Early in the 2nd hour they announced that Robert was 3rd (he was my favorite). So, I decided to surf the web and see what I could find out about B Cell Lymphoma. I ended up at http://www.lls.org/ - the Leukemia and Lymphoma site. Now I was really starting to freak out. Just as the anxiety was really starting to build, the surprise guest appeared - Ellen dancing with Twitch. It was just what I needed. Happy Happy Happy Tears. Thanks to SYTYCD, I was able to go to bed and actually sleep that night.
August 12, 2010 - Norma called first thing in the morning to see if I could come in a little later for my appointment. It worked out well for me because it gave me time to start a three ring binder in which to keep all my research, insurance papers, orders for tests, results, and support numbers. You can take the attorney out of the practice but not out of the person. I knew Dr. Estrellas was wanting me in the office during lunch so that I would be the only patient. I think she was as shocked with the news as I was. I knew she had been praying for me and that really made me feel wonderful. She explained that I would need to see a Hematologist/Oncologist and she wanted that to happen ASAP. Before I even reached home, Norma was on my cell telling me she had an appointment for the next morning at 8am. When I made it home from my appointment, I learned Shelby had made the Varsity volleyball team. I knew it would all work out because the blessings were still coming our way.
August 13, 2010 - Gary and I headed to Genesys Hurley Cancer Center for our meeting with Dr. Black. By this point, I knew a lot about Diffuse B Cell Lymphoma. I had a list of questions and I was prepared. It made me feel much better to feel prepared for this meeting. My first impression is I like Dr. Black. He asked a lot of questions, gauged my knowledge of my diagnosis and moved on from that point. He could tell I was an informed patient and probably could also tell that information made me feel good. He gave me copies of all of my lab work, pathology results and the accepted treatment information for my cancer. He even suggested the http://www.nccn.org/ site. He explained that depending on the stage of my lymphoma I would need anywhere from 4-8 chemo treatments and possibly radiation. In order to determine the Stage of Lymphoma, I was scheduled for a PET Scan and Bone Marrow Biopsy.
At the end of our appointment he gave me a tour of the treatment center and introduced me to the nurses that would be administering the chemotherapy. It reminded me of an Orthodontist office with the doctor in the front and in the back there are recliners and pretty girls.
The hardest part comes next - the telling.
Tuesday, August 17, 2010
How do you study for this test? and I don't like waiting!
As you can imagine, you don't make it through law school and passing the bar without developing some serious issues with test taking. Okay, so maybe it is more of a control issue but darn it I like control. My July was full of tests.
July 26, 2010 - Bright and early I head to Genesys Diagnostic Center for my thyroid ultrasound, breast ultrasound and mammogram. Let me take this time for another shout out to the amazing medical staff at both my primary physicians and at Genesys. I was let into the office even before normal office hours just so that these tests could be done ASAP.
After receiving the results from the radiologist, my doctor scheduled me to have an immediate FNA (fine needle aspiration) biopsy on the thyroid and scheduled me to see a breast surgeon, surprisingly enough it is a woman. See guys women like boobs too ;-)
July 29, 2010 - Another early appointment this one as an outpatient at the hospital. The Physician's Assistant, who performed the biopsy, informed me that special arrangements had been made to do my FNA at this time. Another thank you thank you thank you Norma and Dr. Estrellas.. This was not a bad procedure at all. Then the waiting for results.
July 31, 2010 - Dr. Estrellas calls me on her cell from the treadmill to let me know that the initial report is benign on the thyroid biopsy but there are increased lymphoid cells and I need to keep my appointment with the Endocrinologist.
August 2, 2010 - Praise the Lord Shelby heads off to band camp and Zach is off to camp Mamaw and Papaw. So much easier to handle medical issues when you are not trying to avoid the inquisitive minds of teenagers. My mantra during this period was "It's all fine until someone tells me otherwise."
August 3 - 4, 2010 - Chaperoning at band camp - AMEN - nothing takes your mind of your own troubles like trying to keep the boys out of the girls cabins.
August 4, 2010 - My appointment with the Endocrinologist is made so much better by the fact that I was able to have lunch with my dear friend, Lorrie. We were married the same summer, pregnant with our first babies at the same time and now happily we live only 30 minutes apart. Her husband and Gary were fraternity brothers so we also have many great stories. The Endocrinologist recommended that I have my thyroid removed. I guess that silly butterfly organ is really hard to get a real clear biopsy otherwise.
August 5, 2010 - BOOB DAY! Remember what I said about the FNA being nothing - A vacuum assisted core needle biopsy is not. It is OUCH - Thank goodness I have Tylenol with codeine left over from my neck surgery. Dr. Gold is smart, funny and positive. She informed me that the lump would most likely be nothing. She inserted this really cool looking titanium marker for future mammograms and I was home napping by lunch time. 5-7 days was how long she said it would take it get the pathology results.
August 6, 2010 - August 10, 2010 WAITING - I will say the worst part for me about the waiting was my breast was very bruised and sore. My first run sucked! I tried to run and hold my arm up to keep my boob from bouncing. I know I know Crazy runner! So the next scheduled run - I pulled out my very smallest sports bra and all was good.
August 11, 2010 - Watching an episode of "Covert Affairs" on the DVR with the family. 7:26pm I get the phone call from Dr. Gold. It is not breast cancer. The pathology report is Diffuse B-Cell Lymphoma.
LymphoWHAT?
July 26, 2010 - Bright and early I head to Genesys Diagnostic Center for my thyroid ultrasound, breast ultrasound and mammogram. Let me take this time for another shout out to the amazing medical staff at both my primary physicians and at Genesys. I was let into the office even before normal office hours just so that these tests could be done ASAP.
After receiving the results from the radiologist, my doctor scheduled me to have an immediate FNA (fine needle aspiration) biopsy on the thyroid and scheduled me to see a breast surgeon, surprisingly enough it is a woman. See guys women like boobs too ;-)
July 29, 2010 - Another early appointment this one as an outpatient at the hospital. The Physician's Assistant, who performed the biopsy, informed me that special arrangements had been made to do my FNA at this time. Another thank you thank you thank you Norma and Dr. Estrellas.. This was not a bad procedure at all. Then the waiting for results.
July 31, 2010 - Dr. Estrellas calls me on her cell from the treadmill to let me know that the initial report is benign on the thyroid biopsy but there are increased lymphoid cells and I need to keep my appointment with the Endocrinologist.
August 2, 2010 - Praise the Lord Shelby heads off to band camp and Zach is off to camp Mamaw and Papaw. So much easier to handle medical issues when you are not trying to avoid the inquisitive minds of teenagers. My mantra during this period was "It's all fine until someone tells me otherwise."
August 3 - 4, 2010 - Chaperoning at band camp - AMEN - nothing takes your mind of your own troubles like trying to keep the boys out of the girls cabins.
August 4, 2010 - My appointment with the Endocrinologist is made so much better by the fact that I was able to have lunch with my dear friend, Lorrie. We were married the same summer, pregnant with our first babies at the same time and now happily we live only 30 minutes apart. Her husband and Gary were fraternity brothers so we also have many great stories. The Endocrinologist recommended that I have my thyroid removed. I guess that silly butterfly organ is really hard to get a real clear biopsy otherwise.
August 5, 2010 - BOOB DAY! Remember what I said about the FNA being nothing - A vacuum assisted core needle biopsy is not. It is OUCH - Thank goodness I have Tylenol with codeine left over from my neck surgery. Dr. Gold is smart, funny and positive. She informed me that the lump would most likely be nothing. She inserted this really cool looking titanium marker for future mammograms and I was home napping by lunch time. 5-7 days was how long she said it would take it get the pathology results.
August 6, 2010 - August 10, 2010 WAITING - I will say the worst part for me about the waiting was my breast was very bruised and sore. My first run sucked! I tried to run and hold my arm up to keep my boob from bouncing. I know I know Crazy runner! So the next scheduled run - I pulled out my very smallest sports bra and all was good.
August 11, 2010 - Watching an episode of "Covert Affairs" on the DVR with the family. 7:26pm I get the phone call from Dr. Gold. It is not breast cancer. The pathology report is Diffuse B-Cell Lymphoma.
LymphoWHAT?
Something is not right - Listening to your body
The timeline of discovery:
July 4, 2010 - I woke up with a sore throat. Not like a scratchy sore throat, I actually joked that maybe Gary had rolled over in the night and hit me. The throat was really sore for 3 days. I started to wonder if the plate used in my cervical fusion last year had somehow broken loose and was pushing on my windpipe. After 3 days of soreness, it got a lot better and became just an annoyance.
July 21, 2010 - Shelby had a scheduled doctor's appointment for her sports physical so I called to see if they could fit me in too. My primary care physician felt the strange lump on my thyroid and agreed it had not been there in May. She put me on a course of antibotics and scheduled me for a thyroid ultrasound.
July 22, 2010 - Relaxing at home after delivering Shelby to MSU for volleyball camp, I decided to check my lymph nodes. My lymph nodes didn't feel any different to me but as I continued on to a breast self exam I felt a marble sized lump in my right breast. It kind of freaked me out but I told myself I bet when I check in the morning it will be gone.
July 23, 2010 - No such luck. The lump was still there in the morning. Luckily, I have an awesome primary care physician, Dr. Stephanie Estrellas and her staff quite honestly kicks butt. I called at 8am and was in her office by 8:30 that morning. We both decided this was definitely weird. Thanks to Norma in her office, my Thyroid ultrasound was rescheduled for first thing Monday morning and the great staff at Genesys Diagnostic agreed to also squeeze in a breast ultrasound and diagnostic mammogram. Sorry for using squeeze and mammogram in the same sentence - I just couldn't help myself.
Let the testing begin!
July 4, 2010 - I woke up with a sore throat. Not like a scratchy sore throat, I actually joked that maybe Gary had rolled over in the night and hit me. The throat was really sore for 3 days. I started to wonder if the plate used in my cervical fusion last year had somehow broken loose and was pushing on my windpipe. After 3 days of soreness, it got a lot better and became just an annoyance.
July 21, 2010 - Shelby had a scheduled doctor's appointment for her sports physical so I called to see if they could fit me in too. My primary care physician felt the strange lump on my thyroid and agreed it had not been there in May. She put me on a course of antibotics and scheduled me for a thyroid ultrasound.
July 22, 2010 - Relaxing at home after delivering Shelby to MSU for volleyball camp, I decided to check my lymph nodes. My lymph nodes didn't feel any different to me but as I continued on to a breast self exam I felt a marble sized lump in my right breast. It kind of freaked me out but I told myself I bet when I check in the morning it will be gone.
July 23, 2010 - No such luck. The lump was still there in the morning. Luckily, I have an awesome primary care physician, Dr. Stephanie Estrellas and her staff quite honestly kicks butt. I called at 8am and was in her office by 8:30 that morning. We both decided this was definitely weird. Thanks to Norma in her office, my Thyroid ultrasound was rescheduled for first thing Monday morning and the great staff at Genesys Diagnostic agreed to also squeeze in a breast ultrasound and diagnostic mammogram. Sorry for using squeeze and mammogram in the same sentence - I just couldn't help myself.
Let the testing begin!
Prologue: A Picture of Health
So I figure that I really should start this blog at the beginning: a prologue of sort - pre-diagnosis. Mainly because friends have already questioned how I can have cancer when I'm a picture of good health. And honestly I am. Not only do I live a very healthy lifestyle but I'm also a rule follower. That means I see the doctor and follow their recommendations.
December 2009 was my 2nd Annual Mammogram. No problems.
June 11, 2010, it was time to start Half Marathon training. I registered for the CRIM 10 mile race scheduled for August 28th in Flint, MI. This is a fun race. Anything bad you hear about Flint, this race proves them wrong. The community comes out in full force and really cheers for the runners. I also registered for the Brooksie Way Half Marathon set for October 3rd. I ran this race last fall and had a personal best preformance.
June 19, 2010 as part of the Brandon/Ortonville Relay for Life event, I registered for the American Cancer Society's Cancer Prevention Study (CPS-3). Because I was in good health and had only ever dealt with Basal Cell Skin Cancer, I was a good candidate.
June/July Half Marathon training was going awesome. After spending a lot of time this winter on strength training (I love my ChaLean Extreme), my running paces were much faster than last summer.
Next up - I guess if you can't judge a book by it's cover, a picture of health may not be healthy.
December 2009 was my 2nd Annual Mammogram. No problems.
May 2010 was my yearly physical with my primary care physician. No problems. I even got some nice comments about my EKG. You know things like you can really tell your a runner your resting heart rate is nice and low.
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| Picture of Health Right? |
In May, I joined http://www.sparkpeople.com/ a great website for helping you keep track of your nutrition and fitness goals. I had really been trying to eat a very clean and healthy diet: whole grains, more fruits and veggies, and choosing healthy fat options. At the end of May, Gary and I headed to Secret's Silversands in Mexico for a very relaxing vacation. If you have cancer, bikini pictures are a must ;-)
June 11, 2010, it was time to start Half Marathon training. I registered for the CRIM 10 mile race scheduled for August 28th in Flint, MI. This is a fun race. Anything bad you hear about Flint, this race proves them wrong. The community comes out in full force and really cheers for the runners. I also registered for the Brooksie Way Half Marathon set for October 3rd. I ran this race last fall and had a personal best preformance.
June 19, 2010 as part of the Brandon/Ortonville Relay for Life event, I registered for the American Cancer Society's Cancer Prevention Study (CPS-3). Because I was in good health and had only ever dealt with Basal Cell Skin Cancer, I was a good candidate.
June/July Half Marathon training was going awesome. After spending a lot of time this winter on strength training (I love my ChaLean Extreme), my running paces were much faster than last summer.
Next up - I guess if you can't judge a book by it's cover, a picture of health may not be healthy.
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