Monday, July 31, 2006

How would you like to spend your Saturday evening at your parent's home on the floor doubled over in pain? I did. I have this knot in my stomach that just will not go away. Doctor directed meds like magnesuim citrate, senekot, prune juice weren't helping with the constipation. I am up all night running to the bathroom. yuck. Little relief on Sunday morning, same knot, same pain, same discomfort. I managed to get through most of the day with some sleep, little fluids, and waning energy. By evening, I had no energy left, couldn't sit, stand, eat. A call to the clinic, some brief questions and a directive to go to the emergency room. Dad and I headed to St Lukes. After getting checked in, reviewed by the nurse, we waited, waited, waited. Finally the Doctor appeared and did a thorough examination. He believed I either had severe constipation, or blockage. Xrays and rectal exam showed no sign of constipation, in fact, my bowels were clear. He explained I do not have an obstruction either, but trapped gas. I didn't understand. He told me about the effects of chemo in the intestine and needed to see a CT scan. I was given intravenious fluids, which was fascinating to watch it spread through my veins. Morphine to ease the pain and discomfort, then expected to drink 24 ounces of ooze. An hour or so later I was carted off to the CT scan. Results will be in today as I head off to the Doctor's office once again.

Saturday, July 29, 2006

Friday was my first lab appointment. My white cell count is very low. I have to get Neupogen shots Friday, Saturday and Sunday. They are to boost the white cells. I have a lab appointment on Monday. I haven't been sleeping, so I got a prescription of Ambien. It was recommended that I stay secluded from public places and small children. I decided to stay by Mom and Dad's for the weekend. They have been so kind and good to me. I am tired, achy from the shots, and now constipated. It never ends.

Thursday, July 27, 2006

I called the clinic promptly at 8:30am. The nurse took my information and told me that she would talk to the doctor and call me back. Mind you my mouth has been burning non-stop since Tuesday. 11:30am and no phone call. I called back. The doctor wouldn't be in until 1:00pm. I would be first priority. I tried to go to the grocery store with my dad, but it got to be too much. Finally I got the call about 1:15pm. They wanted me to come to the clinic for a check up and urine sample. Dad and I got there by 2:00pm. I had several exams and four new prescriptions and was out the door about 3:30pm. Walgreens didn't have the one prescription I needed and a storm was raging outside. The pharmacists did an admirable job tracking down the prescription to 76th and Cold Spring Rd. more driving, more burning. We stopped back by mom to let her know what was happening. Ending up eating some food before heading out. The freeway was backed up. I finally got to Walgreens around 5:00pm and had to wait 20 minutes for the prescriptions. I finally made it home a little after 6:00pm. Mouth is soothed. It was a long miserable day.
7:05am no sleep, no work. I tried. Drove about two blocks and had to turn around. I need some kind of help. I will be calling the clinic first thing when it opens.
2:10am no sleep yet. my eyelids hurt. I just got out of the shower, let the water run over me. I believed it made me feel good. I want to thank Jill and the boys, Steve, Aunt Gail and Uncle Wayne, and Christopher for making me smile and really feeling good for a while. I'm off to the couch. more later.

Wednesday, July 26, 2006

I left work about 11:30 yesterday, my mouth hurt too much. I called the clinic, talked to the nurse, and she told me to come in. I went, waited, waited, waited, finally they called my name. I was given some triple elixir to combat the sores. It numbs my mouth for about 5 minutes. I went home, tried to sleep some, didn't happen. I started cramping in the early evening around 7:00pm. Constipation. With the help of Barb, Dad, and Milk of Magnesia, bless them all, I was able to go to the bathroom. For several hours. I haven't slept much, so I'm staying home from work today. My mouth is still sore. Every two hours I rinse with the elixir alternating with the salt water rinse.

Tuesday, July 25, 2006

I've been wondering when the reality of all this would sink in and I realized it's been there from the beginning. The realities are the strange, infuriating, uncomfortable, aggrevating side effects that can certainly push one to the edge of insanity. One mouthful of oatmeal, followed by an ice cube. Cold things are good. Hot food not so good. I know these are all just things to deal with while going through chemotherapy, but sometimes it is just a bit much. Maybe it's the lack of sleep today or the fact I'm at work when I would rather be miserable at home. I'll get by, good days bad days. My reality.
Mouth is on fire. I am developing sores. I am drooling constantly. I can not sleep because my mouth is burning. This is going to be a rough day.

Monday, July 24, 2006

well, my sense of taste has gone, everything is blah. another gradual side effect to contend with. I also noticed how tired I get through the day. I left work about 2:00pm, went to my parents and took a nap before having dinner. They have been so good to me. Spaghetti and meatballs, garlic toast. Of course it all tasted the same. Yet, I can taste the salt in the salt water rinse I have to do four times daily. Figures. I'm going to see the movie Clerks II tonight with Mike and Erin. Hopefully I won't get the hiccup outbreak during the movie.
This morning I am feeling fine. I am at work, day dreaming, waiting for 3:30 so I can head home. I had a good evening, nothing too dramatic happening. I have a rash on the side of my face and neck, the erratic hiccup, and the tip of my tongue is now sensitive to hot and cold food and liquids. Weird little side effects or my own imagination?

Sunday, July 23, 2006

Last night was filled with random, erractic outbursts of hiccups. If I yawned, I would hiccup. If I took a drink of water, I would hiccup. As a matter of fact, I have them now. Sometimes it is one hiccup. Sometimes it is numerous. Side effect? I'll add it to my list. Other than that I am feeling fine. The weather is nice today so I'm going to get out for a while, go for a walk. Enjoy the day.

Saturday, July 22, 2006

it's about 5:35pm. I am feeling fine. There has been no signs of effects on me to this point. I had lunch with Mom and Dad, then dinner with Brian, Ellen, Heidi and Thomas. I am going to take a nap now, rest up a bit, since I took my medicine like a good patient. If anything occurs, you'll be reading about it.
Early Saturday morning. So far the side effects have been limited. I did have some intestinal discomfort Friday evening and a few bouts of diarrhea. I have been documenting these effects in a small notebook to show the doctor/nurses. I'm keeping myself hydrated and am going to start reading the pack of information provided by the clinic. I feel all right at the moment, no aches or pains, no noticable effects. I will post updates throughout the day.

Friday, July 21, 2006

Get ready for a long posting. much has happened, much to talk about. First off, I have Hodgkin's Lymphoma Stage IIB nodular. In stage II, cancer is found in two or more lymph node groups on the same side of the diaphragm. My treatment will be ABVD, a standard chemotherapy treatment for Hodgkin's. I will receive chemotherapy once every two weeks. Standard treatment is four to six cycles (which equals two chemotherapy sessions). ABVD stands for the four drug combo treatment. Adriamycin, which is red; Bleomycin; Vinblastine/Velban; and Dacarbazine/DTIC. All of these have side effects that range from hair loss, loss of appetite, nausea, fatigue, aches, rashes, fevers. I have been prescribed a number of drugs to counteract the side effects. Emend, to prevent nausea, taken on the day of chemotherapy and the two days following; Allopurinal, to clear out my system all the waste product from the chemotherapy (ie: dead cancer cells); Bactrim DS, an antibiotic; Diffucan, an antifungal; and Compazine, for nausea. My Dad picked me up at 11:10am. The appointment was scheduled for 12:00pm. The drive took about 20 minutes. We arrived in plenty of time. Too early. I checked in and began to wait. wait, wait, wait. Soon it was 12:25pm and I had watched the waiting room clear out. Glad I had my Dad to converse with. I was getting agitated, anxious. I checked at the front desk and the receptionist informed me I was scheduled for 12:15pm and I arrived early. I just didn't want to be lost in the shuffle. about 12:40pm I was called. The nurse took my vitals and said the doctor would be with me shortly. He came to see me about 1:00pm. He wanted to explain things and get me into treatment immediately. I was taken into the treatment room about 1:30pm. I don't know what I was expecting, but I didn't expect to see a wide open space with recliners and chairs. Patients sitting next to each other getting treatments. My head was thinking sterile empty rooms, radiation suits, and big needles. This was much more relaxed. The nurse came over and started my IV, commenting on how nice my veins were! I was given an intravenous nausea medicine before I started with a test dose of the Bleomycin, which some patients could have severe reactions to. I didn't react. Then I was given the rest of the medications. While this was going on, the nurse explained the medications, the prescriptions, and provided me with a notebook with detailed information about the drugs, side effects, ways to treat them, dietary, and contacts. lots of information for me to read. Dad reviewed and pointed out things to me. He also got me a fruit cup and a muffin from the cafeteria to munch on. The whole thing took about three and a half hours. I haven't noticed any effects yet. While I was waiting in the main lobby, I noticed a man of a different ethnic background wearing a proud tshirt. His cell phone rang. He answered it. He had a robot voice. I was intrigued, fascinated, but I didn't want to stare at him. I did eavesdrop though, just to hear the robot voice. Amazing technology. Everyone say "Yo" in a metallic robot voice. Truly amazing.

Thursday, July 20, 2006

I am taking it easy today. Trying to rest up, but the phone keeps ringing. It was Christmas in July at work today. The company provided shredded beef and rolls. Employees brought in lots of other food. There were three different queso/salsa dips, taco roll ups, crab salad, potato salad (which I provided), cheese tortellini, chicken tandoori, and lots of chocolate desserts. Food days at work are great. I stopped at Target on the way home and bought new underwear, socks, shorts, and t-shirts. I figure the clothes I wear during treatment will be chemo-clothes and after it's all over with, I will not wear them again. Tonight I am going to lounge on the couch and relax. I'll watch Big Brother and read. Tomorrow will be filled with many adventures and activities and needles.

Wednesday, July 19, 2006

The one thing that has overwhelmed me this whole time is how much people care. Janice, a woman I work with brought me a Tinker Bell knapsack and good wishes. Judy, another woman here at work brought me Bamboo plants. My brother Brian and his wife Ellen brought me part of his birthday dinner, complete with dessert. Mom and Dad often send watermelon home with me, often treat me to Blizzards and Shakes, Cards from My Aunt Sandy and Uncle Fred, Tim and Julia, Pat and Toni. My friend Mark gave me a beautiful crotcheted afghan. Kent has gotten me a large insulated mug so I keep myself hydrated. The list goes on, the hugs, the well wishes, the prayers, the support.

Tuesday, July 18, 2006

I am RADIOACTIVE. Thanks to the CT and PET scans. They were rather interesting tests. The technician first tested my glucose level. 94 mg. Normal is between 80 and 120. She inserted an IV to give me the PET scan liquid. I also had to drink this sugary lemony tasting liquid. Then I had to wait about 35 minutes to wait for the liquid to circulate. I almost dozed off. Then she came and told me the test would begin. The CT scan was first. I was hooked up to an IV containing a dye. The machine was like two large donuts with a bed that moved through the donut holes. The machine rattled and hummed and made noise while I moved through the scanner. I imagined it being a futuristic Disney ride. The technician told me the dye might make me feel flush when administered. It did. My crotch got all warm. Geez. I was expecting my face, neck. The test took about 15 minutes. Then it was the PET scan. The machine was quiet and I just moved through the machine for about 30 minutes. The technician played Genesis. I had to have my arms over my head the entire time. It seemed to go fast, it was over and I could head home. Now the wait begins until Friday.

Monday, July 17, 2006

I need to prepare for tomorrow's PET Scan. The rules are as follows:

24 hours prior - No exercise or heavy lifting.
12 hours prior - No caffiene or smoking.
4 hours prior - No food.
Drink water, keep hydrated.

I kind of like the 24 hour rule. Not liking the rest of the rules much.
It's 4:10am CDT. I am miserable. Night sweats, fevers, aching lymph nodes, little sleep. This is what I go through most nights, but not so bad as tonight. I fell asleep around 11:00pm, was awake by 12:30am, drenched and achy. Took some Excedrin and tried to get some more sleep. Tossed and turned and got some sleep until about 3:00am. I've been up since, covered in a sheen of sweat. I'll drag myself into work this morning and see how long I last. There's not much else I can do. Keep myself hydrated, get rest and sleep when I can. On nights like this, not even popsicles help. Today is going to be a rough one. I'm definitely going to be cranky.

Sunday, July 16, 2006

Today I'm all about staying cool and resting. I've been reading a book, watching some Disney favorites; The Lion King; Beauty and the Beast; Fun and Fancy Free, and napping. I'm going to try and conserve my energy much of the next week for treatment. I know this isn't the most exciting post, but I'm going to have days where not much is happening. Yesterday I went to Bastille Days downtown for a number of hours, walked around, saw the air show, ate good food, and enjoyed myself. When I got home, I was beat, exhausted. So today is a lounge day. Tomorrow I'm back to work after a few days off. Funny how I'm not looking forward to it! Well, I'm off to the couch again, going to throw in Peter Pan and have me a dreamsicle.

Saturday, July 15, 2006

Having time to rest and relax gives me opportunity to think about things. I've been thinking a lot about Carol, a woman I had the pleasure to work with until she retired. Carol was the general housekeeper at work. She was the kindest, sweetest, and one of the nicest persons I have ever met. Through the years as I got to know her, we became good friends. We talked about our lives, the world. I am one of the first people to arrive at work in the morning. This always gave Carol and I the chance to converse before the day got to hectic. When the weather was nice, we would go sit on the loading dock, coffee in hand, and just appreciate the morning. It was a simple pleasure that we both enjoyed and shared together. Carol had battled cancer throughout her life and one day she informed me her cancer had returned. She would be going for treatment and working part time. This went on for a number of months. While the treatment was rough, she handled it with grace and dignity. Her cancer had spread and she was terminal. She was given a matter of time. She decided to retire from the job and continue with treatments. On her last day at work, the company gave her a huge luncheon. I bought her a gift, a book to write about her life, her memories. Everyone has a story worth telling. I saw her several times after she retired, and we always shared a smile, a laugh, and a hug. She past away last fall. I was out of town on business and I missed the funeral. Carol touched my life, taught me to enjoy the smallest moments. On the day of her retirement, I was lucky to have one of those moments caught on film. The picture of Carol and I still stands on my desk.

Friday, July 14, 2006

The bone marrow biopsy was definitely an interesting experience. It really didn't hurt, but there were some wild sensations. I woke up this morning not feeling very good so I wasn't looking forward to having the test done. Dad picked me up promptly at 9:00 and we were on our way. We got to the office, I checked in, and we sat in the waiting area. We had coffee, talked, and waited. I noticed a woman who looked familiar but I couldn't place her. She looked at me the same way. It wasn't until I was laying in the room after the test did it come to me. The nurse called my name, took me back to the room where the bone marrow biopsy would be done and administered a shot of Demerol to relax me. About 20-25 minutes later the technician came in. I was relaxed and the procedure started. she numbed my right hip area and began collecting samples. I felt no pain. I could feel pressure at times. The technician explained what she was doing as she went along. First she collected fluid samples, which created an icy prickly sensation that ran from my hip, down my buttocks, into my thigh. very interesting. Then she collected bone samples. That created a warm rippling prickly sensation that went straight though my groin area. Another interesting sensation. The test was over. I was bandaged up and had to lay on my back. The office had also scheduled an echocardiogram for today. That technician came in, set up his equipment and ran his test. It was pretty much an ultrasound of the heart. It took about 15 minutes. The echocardiogram was done to have a record of the function of my heart because treatment may cause damage to the heart and the doctors needed a reference point to monitor the effects. After the technician left, I started thinking about the woman in the waiting area and tried to figure out where I knew her from. The first mental image that came to me was of Club Marilyn happy hour buffet late 1980s. That was it, her name was Vanessa and I worked with her at Kemper. The nurse came in told me I was all done for the day, I could get dressed and head out. The woman was gone from the waiting area so I didn't get a chance to say hello. Now I have a few days rest before the next test. I am tired so I'm going to take a nap.

Thursday, July 13, 2006

Today I had my appointment with the Oncologist. Lots of information to convey. First Impressions are good. He was very thorough about explaining what Hodgkins Lymphoma is. In basic terms it is the uncontrolled growth of abnormal blood cells. He went on to explain the Stages I, II, III, and IV. Stage I involves one lymph node area primarily. Stage II involves two or more lymph node areas below the diaphragm. Stage III involves lymph nodes above and below the diaphragm. Stage IV involves lymph nodes and bone marrow. Mind you, I am not a doctor and could have the staging too simplified. The stages can be categorized as standard or 'B' if symptoms include fevers, night sweats, and weight loss. My symptoms include these. Then there is grading within the stages. they include Lymphacyte, Modular, Mixed Cellularity, and Lymphacyte Depletion. The array of tests with determine my stage and grade. He then explained treatment as Chemotherapy +/- Radiation; ABMT/Allogenic; Stem Cell transplant. Treatment depends on the staging process. The staging process includes a number of tests which have been scheduled. Today I had a hell of a lot of blood drawn. 11 tubes full. They are for a complete blood work up. Tomorrow I will be having a Bone Marrow Biopsy. Next Tuesday I will be having a PET Scan. I am scheduled for my next doctor's appointment and first treatment next week Friday. They move fast. I am ready though.

Aside from all the information I am digesting, I just want to say thanks to my entire family for your love and support. It means everything to me. My friends have been incredible themselves and I love each and everyone of you. You've all made an impact and difference in my life and I am grateful for having you in my life.

The first thing the Doctor said after introducing himself was "my goal for treatment is to cure you". I liked hearing that. He made me feel confident. Good impression. After all explanations, I had a complete exam. Stats: 97.9 temperature; 139 lbs (I gained some weight back!) 100/60 Blood Pressure and my pulse was 80bpm. All good. Lungs clear. He then checked all lymph node regions, liver, and spleen. Without the bloodwork or scan to confirm, the doctor believes I am either Stage I B or early Stage II B. The resulting test will confirm my stage. That is promising, but we will wait for test results. Overall, I feel good about things after meeting with the doctor. I needed to sit with him.

I now feel I am walking the path to recovery, to being well. It may be an arduous journey, but I am on my way.

Wednesday, July 12, 2006

Tomorrow is my first appointment with the oncologist. I am set. I have a notebook with a list of questions. I am exhausted by my symptoms, can not wait for them to fade. Swollen lymph nodes, fevers, night sweats. I change shirts and pillow cases once a night, sometimes more.

Tuesday, July 11, 2006

07/03 I received the results of my biopsy. Hodgkin's Lymphoma. I have cancer.