Much delayed update

I started this blog post back in October and low and behold it is already January!!! I got busy with hockey, my kids and life. I finished my 16 weeks (8 treatments) of chemothearpy on December 4th. It went by very fast. The last four treatments were a different chemo drug called taxol. It brought with it a whole different set of side effects which were easier to tolerate. The main side effects were bone, muscle and joint pain. This was managed well with percocet and advil. The side effects started on the 3rd day (Sunday), peaked on Monday and subsided gradually on Tues. and Wed. I have a pretty high pain tolerance so it went well. Also, the drug took longer to administer so I got a mini-hospital room with a bed. There was a TV with free movies. I actually enjoyed the 4 hours with Mark watching movies and snoozing. December 4th brought with it some strange feelings. You would think that I would have been happy and excited to be done. I walked out of there feeling strange. I wasn't really happy or excited. The treatments had become part of my routine and I knew what to expect. The nurses were so nice and enjoyable to be around. Now that it was over it was on to the next group of unknowns.

I have been told that my hair should start growing back approximately 2 months following chemothearpy which puts it at early February. (Thank goodness because I only have around 4 eyelashes left and am getting sick of drawing on my eyebrows!) I know this sounds strange but I am actually looking forward to having my eyelashes and my eyebrows back more than the hair on my head. I have gotten used to wearing my hat and not having to do my hair in the morning. I also kind of like it when Jeffrey sits with me and rubs my head. As I write this today, I have peach fuzz growing on my head. Soon I will no longer look like uncle Fester. (For the young set who may be reading this he was a character on the Addams Family who I have to say right now I resemble a little too closely!!) My eyelashes are starting to grow back as well. Not enough for mascara but I can feel them just the same.

I had my surgery on January 13th. We were ecstatic to learn that all pathology reports came back negative. The chemotherapy, prayers and positive thinking worked. No more cancer!!!! Also, LB had shrunk to 2mm when it was removed. LB is no more!!!!!

There is more crap in the coming weeks but I am feeling so positive about my future. There is so much living to do. God has blessed me with so much; 4 great kids, a wonderful husband, great friends, a wonderful world to enjoy and many more fish to catch!!

The Side Effects

I find it ironic that a person like me, who could sleep through a freight train driving past my room is up at 3:30 in the morning writing on the computer. Yes I am talking about side effects today. Before all of this occurred, I would put the boys to bed and get my second wind around 10pm and wait up until 12am to have a conversation with my husbnad. I would crash into bed about 12:30 and get up around 6:45 after having smashed on my snooze button around 2-3 times. THIS HAS CHANGED! Now, I take either a couple ativan or an ambien and go to bed at around 9:30. If I am lucky, I can sleep until between 5:30-6. Who would have ever thought! Am I turning into my mother? When I wake up in the dark I peek one eye open to figure out what time it is not really wanting to know. I made an attempt to go back to sleep this morning with no such luck.

When I started chemotherapy, well meaning people told me what I was going to go through, ironically many of them not having gone through it themselves. Except for the hair loss, the side effects have been minimal and tolerable. I call the side effects more like a nusiance. Everyone has heard about nausea and vomitting. No vomitting for me. It reminds me of morning sickness a bit without the blowing chunks in the bathroom. I take compazine, ativan and Dex proactively for the first 3-4 days after treatment. I also try not to let myself get hungry and I eat smaller portions when I do eat so I won't get too full. The funny thing is that sometimes I forget that I should stop eating and then I am bloated and burp alot. Such the lady that I am.

The other nuisance side effect is watery eyes caused from dry eyes. I know it doesn't sound right. Dee explained this to me but I can't seem to explain it back. My eyes water all of the time. I AM NOT CRYING! I do use eye drops which has helped a lot. I bring my make-up bag to work and re-apply eye liner etc a few times a day so I dont' look like death warmed over.

Another nuisance side effect is the foggy brain from Monday through Thursday following my Friday treatment day. The good thing is that I am faking it pretty well at work. I can still function and speak normally. The bad thing is that I have to concentrate harder and I hate the feeling. I feel like I am on auto pilot at work. It would be interesting or maybe not so interesting to go back and read some of my notes at work on those days!!!

They told me as well that certain foods may not taste the same anytmore. This has been minimal. There is only less than one week from Sunday to Friday after treatment that I notice this. And get this. The food that doesn't taste right to me is my pop! Of all the things that I can't stand for that week is my pop. Go figure! My mom is happy about that actually because she hates watching me drink my Diet Mountain Dew.

The other more scarey side effect is loss of white blood cells. I had said in an earlier post that the chemotherapy drugs kill white blood cells and also cause anemia. The anemia has come on gradually and I haven't noticed anything real significant except I fall asleep sitting in my chair at home more often. (or is that a Rodde family trait?) On the Saturday after my treatment, I am given a shot of neulasta which does build up white blood cells. This is a protection for me but I am still at risk. The scarey thing about the white blood cell loss is that I am at risk for infection and little guard to fight it. If I get a fever, of over 100 I have to go to the hospital. Mark has purchased hand sanitizer and placed them strategically around the house. I have stopped sharing drinks with my family. (Mom can I have a sip of your pop?) They don't ask anymore but Jeffrey will ask if I am almost done and then ask to finish mine off. I have stopped kissing my kids goodnight but now we blow kisses instead. I still give my hugs no matter if they want it or not. (Actually it is Kathryn and Jim that I have to force my hugs on!) My kids are quite amazing and brighten my day everyday. The best thing about kids is that they keep enjoying life in between all of the crap!!! Take your day and enjoy everything in between all of the crap. There are too many other things to talk about than to talk about cancer all of the time!

The Hair

The most significant side effect of chemotherapy is hair loss. Chemotherapy drugs attack all fast growing cells but the drugs can't determine what is a "good" cell and what is a "bad" cell. Therefore every fast growing cell is destroyed including hair and white blood cells. Before I started my chemotherapy I was told that hair loss usually occurrs between 2-3 weeks from the first treatment. That was a very frustrating thought. That date was looming out there. I felt like I was constantly wondering when it would happen and how. Was it going to fall out all at once? Was it going to gradually fall out? It was hard to believe it would happen because my hair was normal and for the most part I didn't feel any different. Occassionally, the sensation in my scalp would feel like I had been wearing a pony tail too tight.

On August 28th Kathryn went with me to Erickson's to pick out some hair. I tried on a few and we picked out a wig. She matched the color and placed the order. I also purchased a few scarves and hats. I didn't leave there feeling really excited about the wig. It looked pretty fake to me. I knew I wasn't committed but a little concerned I wouldn't have it for the ominous day.

At work on Tuesday September 8th I was running my fingers through my long hair when I pulled out about 20 strands all at once. (I should back up a little. Every morning there was quite a bit of hair on my pillow and occassionally I would hear Mark spitting out my hair!) I decided this had to be the day. I called my interim hairdresser. (my usual hairdresser is on maternity leave.) The thing about the shop I go to as that there is less than 6 degrees of separation between me and any one of them. My interim hairdresser Dana happens to be the aunt of my oldest sons best friend who also lives on the next street and lives about three blocks from our house. So I called Dana right away and she could cut my hair in her garage. Before I left the house I cried a little in Mark's arms. He has always liked my long hair and so have I. I know it will grow back but it is nothing I have control over. It is not my choice to lose my long hair. I have a little control over how I lose it right? I decided to get it cut short so it isn't so dramatic. Although, I can't help but think that this is such a small price to pay for my life and my health.

So, Kathryn came with me to Dana's. There were no more tears. Dana started gradually cutting. In the mean time, her son TJ was riding his bike around the garage chatting with us and more neighbor kids showed up. It took the tension out of the room. The final result was actually cute and I may decide to have short hair when it starts growing back again. In the few days that I had the short hair it was fun. I just washed, flushed and left the house.

Following my second treatment on September 11th, Kyle, Jeffrey and I headed to mom and dad's for the weekend. I hadn't seen mom since my diagnosis and she still wanted to give me a hug. It was a good weekend. Mom and I did a little shopping and had a good weekend. On Sunday September 13th it started. (2 weeks and 2 days from my first treatment.) I combed my hair after my shower and clumps of hair were on my comb. I put it in a baggy. All the way home from mom and dad's I kept pulling it out more and more and putting in a baggy. Kyle was sitting next to me and helped me a little. When we got home and I got the kids to bed, I sat and watched TV. While I was sitting there, I just kept pulling out hair and putting it in the baggy. By the time the program was over, I had pulled out most of my hair . It was strange because the more I started pulling, I couldn't stop my self. It was such a surreal moment. There were no tears and I felt unusually calm. It was like the waiting was finally over. It may sound a little wierd but I still have the baggy of my hair. I don't know why. So, I shaved the rest of the hair which wasn't much. My face was still tan from summer and my scalp paper white. A sight to be hold.

My next task was to figure out what to wear on my head for work. All of a sudden dressing in the morning creats a whole new challenge. You see, I have spent most of the money I make on my children so my wardrobe leaves much to be desired. So now on top of my usuall wardrobe challenges, now I have to match something for my head!!

The first day at work was difficult for me. Residents and family members had no knowledge of the war I was in. So the first day was a day of answering many quesitons. Each day after has gotten a little better. I still find it difficult because I continue to see family members everyday I haven't seen since the war began and the hair fell out. It gets tiresome but getting better. Following an unusually difficult care conference, I was talking to a co-worker and I said, "I would pull out my hair after that meeting except I don't have any!!" Thankfully some laughter!!

I wanted to end on a more positive note today. I wasn't sure how to handle the hair loss and the children. I had been worried that they would be bothered by my white, bald head. So, to that point I had always kept a hat on around the house. Jeffrey said to me one day, "I am sad." I asked him why. He said, "I am sad because you are sad." He thought I was sad about being bald. So I asked if he wanted to see. He gave me that wonderful shy smile with his big dimple and nodded. So, that was the end of wearing hats around the house. Kyle and Jeffrey rub my head every once in awhile. Our home is open now and I am most comfortable in my baldness. I have even started going bald around Kathryn's boyfriend Travis. He has become like family anyway as he is, much to my happiness, at hour house everyday.

So, on Friday October 9th I finally picked out the wig I liked. It seems more natural and it has highlights!!! It isn't itchy like I expected either. The boys are dying to wear it for Halloween over their scarey masks. Not going to happen!!!

So, as I have said before, there is so much living in between all of the crap going on so whoever is reading this, keep living. I went to a conference last week for the Minnestoa Nursing Home Social Worker's Associaltion. The last speaker was an uplifting speaker talking about adultitis and having fun in your life. Learn to find joy in the small stuff and find an excuse to celebrate and have a party!!

So today, Mark and the boys are hunting and I am still curled up in bed with my dog, a movie and my computer. (It is 10:45 am) I played hooky from church today. (Glad mom doesn't have a computer. If she sees this sorry mom!)

The Treatments

I had planned to write about each treatment separately but I got busy with homework and living life I ran out of time. So, here is another synopsis.

Treatment #1

My first chemotherapy treatment was August 28th. To tell you that I was nervous was an understatement. I was provided with a book on information about chemotherapy treatments including potential side effects. Of course I read the book, not cover to cover but enough to make me nervous. The nurses on the chemo unit are quite wonderful and pretty much suggested I not read "the book" anymore!!!

I have a total of 8 treatments scheduled over the next 16 weeks. The first four are 2 hour treatments. During the treatments, there are two different chemotherapy drugs that are administered. Prior to the first drug, I am given Dex (for short). This is an anti-nausea drug. I take 5 of them at this time and then continue taking, tapering the amount over the next 4 days after treatment. The chemotherapy drugs are given through IV in addition to ativan (given for nausea as well). When that part of the treatment is done it is on to the next through same IV. I am given 3-4 popsicles to suck on. This prevents mouth sores. The second chemo drug looks like cherry kool-aid. I have visions of these drugs attacking LB when I watch the liquid go into my vein. It is especially easy to visualize the red drug attacking LB.

The Chemo unit has several rooms in it. There are two large rooms with 8 chairs. The chairs are electric recliners. There are also mini-TV's and the auxiliary volunteers come around with snacks and drinks. On the other side of the unit are small hospital rooms with beds. Those rooms are for people who are there for several hours and are more comfortable.

Getting back to treatment #1. I brought my book thinking that it would be a nice time to relax and read. But actually, the atmoshere is quite relaxing. It is almost like going to the beauty shop. People are chatting with the nurses and it is easy to get caught up in the conversation. People in this world are quite amazing. I feel so humbled to be in the same category of cancer patients with some of these people. One man travels from Michigan every week to get his treatment!!!!

Following that first treatment Kathryn and I went to pick out my new hair. That will be a story for another day. We then went to Victorias for lunch. Aside from the whole having cancer thing and getting chemotherapy, it was actually a fun day.

Treatment #2

My second treatment was scheduled for Friday September 11th. Following initial treatment, blood work to check hemoglobin and white blood cells is done prior to all other treatments. I also met with my oncology nurse practioner, Dee. I will be with her for the next 10 years. We talk about the side effects and effectiveness of the medications. She is concerned not only for the cancer and treatment but also concerned about me as a person. My ability to stay as stress free as posible effects the success of the treatment. The last part of my visit with her is to examine LB. Very good news today. After only one treatment, LB is smaller!!! So, between the treatment, prayers, my positive thinking and my husband doting on me, it is all working!

Again, I bring my book but again I got caught up in the conversations going on. I am awestruck by some of the people sitting in the chairs. Just like every cancer is different, each plan of attack is different. I didn't know this before I started, but there are different types of chemo drugs catered to each kind of cancer. It's amazing how quickly the 2 hours go in that atmosphere. Unfortunately, the room is usually filled with 8 people.

Treatment #3

I had my third treatment on September 25th. I had my blood drawn as usual. Dee was away for this treatment so I saw a fellow and an oncologist instead. Let me just say, I miss Dee!! That's all I will say about that!! Because the fellow and physician don't know me they were not able to determine if LB was smaller or not. I left feeling a little bummed. But, I was meeting a good friend for lunch so I soon got over it.

Again the chairs were full. Again I brought my book. Again, didn't get much read.

Treatment #4

Today is October 9th and I am heading to the Mayo Clinic in a little bit for my 4th treatment. This will be the halfway mark. The time has actually gone by pretty fast. I don't know who I will meet today. I am looking forward to seeing Dee and finding out if we are still making progress. Again, I have my book in my purse ready to go!!!

The Tests

Although all of the testing I went through, when I think back, the tests were only over a span of a week. Actually in retrospect, some of it is a little funny.

My initial mammogram at my primary clinic was nothing out of the ordinary. As I had said before, I knew this was likely very bad so I was relatively calm. Waiting in the ladies waiting room in between the mammogram and ultrasound, there was tons of literature about the "journey of breast cancer". That's when it hit me about the word journey and how annoying it is to me. For right now anyway, I can't look at this as a journey. This is a still a war to me. (I know this war will likely last the better part of 10 years.)

Beginning in the middle of the week beginning on Wed. 19th. I had several mammograms and another ultrasound. After, the first on the 19th, was the day Dr. Ghosh told me "this is worrisome." So, I had the second mammogram after Dr. Ghosh had shared this with me. I held it together during the mammogram pretty well. The technician had finished the scan but was finishing her work on the other side. The machine had released but my boob was still sitting in the machine. At this point I just started sobbing. I had already cried with Dr Ghosh but this was different. It was me alone (sort of) and it was hitting me liking a ton of bricks. The technician was very kind. She grabbed me a bunch of tissue and found me a room to myself.

I dropped Mark at home and I went to the grocery store. While at the grocery store, I received a call that they had squeezed me in (no pun intended) for an MRI in two hours from now. I had never had an MRI before and didn't have time to ask any questions. (sometimes ignorance is bliss isn't it?) I knew very little other than Mark told me to keep my eyes shut or put a cloth over my face. When I got back to room where they were to install the IV, there was a sign that some patients need ativan prior to the test. So, not knowing much I asked for some. Well, it was too late in the day so no such luck!!! The other thing is that on with most MRI's, the said patient will lay on their back. With an MRI to scan the breast, I laid on my stomach with my boobs hanging through these holes. It was like they were hanging in the breeze, very weird. The other thing is that when I got on the table, I didn't look back into the tube. (again, ignorance is bliss) I also didn't realize what close quarters this was until I took a deep breath every once in awhile. The technician also gave me a panic button in the event I couldn't stand it anymore. Knowing there was a panic button almost made me more panicked. Each scan would last around 5-7 minutes with a total of between 30-40 mintues. Before each scan the technician would say how long the next would last. I tried to think of things to distract me. I needed to stay distracted because I needed to stay entirely still. Whenever I thought about the kids I started to cry, that didn't work. I tried to think of our last vacation and that made me well up as well. I tried to go to Sannibel Beach in Florida and that had the same effect. Finally, I thought about work and a conversation I had had with one of my nurses earlier in the week. That finally did the trick. The rest of the scans went very quickly.

The next day Thursday the 20th, was more tests and procedures. In prepartation for posttible surgery, I had a chest x-ray and fasting blood tests. I have to tell you that Thursdays in the summer in downtown Rochester we have "Thursdays on 1st" This includes blocks and blocks of food vendors from local restaurants, booths with peoples' veggies and otherthings people like to sell. OK, like I said, I was doing a fasting blood test later prior to the needle biospy and I couldn't eat anything!!!!

Another mammogram was done on the day of my needle biopsy on Thursday the 20th. The needle biopsy was guided wih ultrasound. The radiologist was from a southern state and had never heard of the nursing home where I work. That was a helpful sign for me. Because if he had, he probably would know someone. (I usually can't go anywhere without knowing someone I have worked with and end up talking about it.) My friend Amy and I (we used to work together) ALWAYS run into someone when we are together. Anyway, I told the nurse before the doctor got there that I didn't want a play by play. If I can keed my mind on something else I don't have to think of about what is actually going on. (huge needle going into a very sensitive part of my boby) This strategy has always worked well for me. So, the radiologist was very understanding. There were 5 samples taken. For each sample taken, he only told me because there is a loud click with each sample. During the biopsy, the doctor placed a tiny bead next to the tumor for future assistance in locating the tumor for surgery. So, I had to endure one more mammogram to have record of the exact location.

On Thursday August 27th would be my final test. I met with my oncologist on Wed. and he wanted to do a PET scan to determine if the cancer had spread anywhere. I was given the instructions and headed on to work a few hours on Wed. I got home around 7 pm and popped in the beef stroganoff over rice that my wonderful husband had made. While it was cooking I got the intstructions out for the test. It said: low/no carb diet, high protein. Well, guess what. No rice for me. The only high protein no carb foods available in the house was eggs. Ok, I like eggs once in awhile. I like a good omelet with hashbrowns on the side and some fresh fruit. All of these would not be incdluded!! So, the only thing I could drink is water. (All other drinks were banned as well) I choked around 3-4 eggs down and the required 48 oz of water before bed. Also guess what!!! The test wasn't until around 1:00 pm and guess what else? It was Thursdays on 1st again!!!! The test itself wasn't a big deal. I sit in a chair for about an hour with a sugar compound injected. The sugar compound attaches itself to any cancer cells. So I sat in a chair for an hour. I couldn't read my book because they needed me to sit very still. I put my headphones on and tried to sleep. Unfortunately I couldn't sleep. The woman next to me was snoring so loud, over my music that she could have raised the roof! The pet scan itself wasn't bad. Another tube but not so small and more relaxing.

I have spoken already on the the results of all of the tests. I know there will be more tests of the same when the chemotherapy is done. I am slso hopeful that the next MRI and mammogram will show a smaller and less visible LB!!!!!

Of course one thing that I have to say is that my wonderful husband has been at my side during this whole ordeal. I wouldn't have expected it to be anyway else. However, we have been together for 20 years and having teenagers has certainly taken it's toll on us. He has been quite wonderful and helping with normal parts of life even though I don't feel like I need the help yet. (it is nice to have the break!)

The Synopsis

I have always been a private person and as well do not like calling attention to myself. Anyone I work with and who knows me well can confrim that. Creating a blog to talk about myself is a bit of an oxymoron isn't it?! My dear Marianna told me that everyone is going to want to know how I am doing and how things are progressing. Unfortunately, everyone knows someone that has or has had breast cancer. Of all of the amazing women that have experienced this, every woman has their own story. Just like each woman is unique, each story and experience is unique. My story and my experience are unique as well. This is my story.

I have heard over the years people referring to the breast cancer war as a journey. When I hear the word journey I think of something positive. I think of a journey of self discovery or a long trip somewhere. Certainly I am in this for the long haul. However, I look at this as a war. I am waging this war with the help of Adriamycin, Cytoxan, surgery and radiation. My first battle in this long war is with Adriamycin and Cytoxan (chemotherapy). A war is something I can win but a journey never really ends. I intend to win this war. I refuse to give LB the satisfaction!!!!

It all started actually on the day before my parents 54th wedding anniversary. I knew in my gut when I found the lump that it was bad. I had no belief that it was a cyst or anything else others may try to pretend it may be. I also knew that my life would never be the same. I decided that I was going to enjoy the weekend with my kids. I took the boys to the beach and we went for a bike ride. We had a great weekend. Not knowing what my future held, I also cleaned out the storage. I got the hunting and hockey equipment ready to go for the men in my life.

The next 2 weeks would be the most difficult 2 weeks of my life. I had my first mammogram and ultrasound on August 17th at our primary clinic. That afternoon, a meer 2 hours after I left the office, my np called and they were referring me to the Mayo Clinic for more testing and biopsy. I got the call while at work at my desk. Liz (my friend and boss) and I have shared so much while sitting at our respective desks. We have both overheard each other way too many times hearing bad news and crying for each other. I don't know what I would have done without her during those 2 weeks. She kept this secret for me for over 2 weeks until I was ready to share with everyone. I know this was difficult for her. Everyone at work was asking what was going on. You see, I haven't taken a sick day in probably 5 or more years or maybe since I was on maternity leave with Jeffrey. I had been gone for 3 days out of each week and Liz and Ashley had taken over most of my work. For this I am eternally grateful. Even though I knew in my gut that is was bad, each time it was reinforced, it brought realization and terror. There were moments that a sense of panic would overtake me.

I officially began my war with LB on August 19th when I met with Dr. Ghosh at the breast clinic. The last half of the week was filled with multiple mammograms, ultrasound, an MRI, blood tests and chest x-ray (in preparation for possible surgery) and then the ultimate needle biopsy. While I was about to go in for a second mammogram Dr. Ghosh took me into her office. She did not mince words and in the kindest way possible she told me what she thought. She took both my hands in hers and said, "This is worrisome". She took me in her arms and let me cry and sob on her shoulder.

Monday, August 24th was the day we got the official results of the biopsy. We had already known so it was just a formality and to know what kind of cancer it is. LB is powered by estrogen and is HER2 negative. In the great scheme of breast cancer it is the best kind of breast cancer to have and it means that it will be the most responsive to treatment. In other words, LB doesn't have a shot. So finally some good news! More good news the next week after a PET scan tells me that it has not spread anywhere. Actually, before the biopsy was done, the Mayo Clinic had already put me on both surgery schedule and chemotherapy schedule one of which would occur on August 28th.

Monday, August 24th was the day that we had to share this news with the kids. Most difficult to do. Kyle and Jeffrey are young enough that everything is matter of fact. Kyle and Jeffrey were very non-chalant. So you're getting medicine and then you will be ok. Can I go play now? kind of attitude. Telling Kathryn and Jim is more difficult. They are smarter and know more about the world. That is all I will say about that!

Monday, August 24th was also the day that I had to call my mom and tell her. I was quite nervous about that. I have always admired her more than anyone in the world. I admire her not just because of how she handled her own cancer but the childhood she gave me and the constant love she gives. She had breast cancer at age 49. I, as an 11 or 12 year old, didn't have a clue what she was going through. As an adult, she told me once that she never said "why me?" but she said "why not me?". Remembering that statement has helped me deal with this the most. It helped me to face this head on rather than sit and feel sorry for myself. My mother is an amazing woman!!

Later in the week I met with the oncologist and surgeon to develop our war strategy. It was decided that the most aggresive strategy was to start immediately with chemotherapy followed with surgery and then radiation. The thing is is that once a plan was in place and knowing that it would start immediately, I immediately had a sense of peace. Every ache and pain I felt from stress disappeared. Sure I was still scared but I was now calm and could take on a positive outlook.

Now I am sure whoever might be reading this is wondering what LB stands for. Liz, Sue (our administrator) and I were chatting on the Wednesday before my treatment was to start. We were talking about the cancer, the tumor and what may be happening on Friday. (I still didn't know if I was going to have surgery or chemotherapy) I think it was Liz who under her breath said "The bastard" in reference to the tumor. Pretty soon the three of us are laughing and calling it Little Bastard. We haven't called it that since but I have.

So, the war is on!!!!!