Some Thoughts

The next two weeks went as they had in the past. I was up to about ten to eleven days of Percocet and sleeping. Then I did start to feel better. Little bit by little bit. It is surprising how much strength you lose when you have slept through the better of four months. As I began to feel better, I was working in the yard in stretches of about 15 minutes. I was a real go getter! For every 15 minutes outside, it was about 30 minutes inside. Slowly I have built my strength back. I am still not up to speed, but am getting there.

Before I get into radiation, I want to share a couple of things that I put together for some friends that have been diagnosed and are in the process as I am. If nothing else, I hope I can educate on this journey. Keep in mind, every day more and more are diagnosed with cancer. And very few will get through life without cancer touching them in some way.

The other thing I want to say is everyone is different in how they choose to go through this, their reactions to treatments, and their decisions on what they are going to do. I have had many say, “well, my aunt (or uncle or brother or dad or good friend or . . . ) went through treatment and is was much worse for them (or better or didn’t bother them or . . . ). It is different for all.

I also want to say that you cannot make the choice for whoever is dealing with it. Just be there to listen. Don’t pressure them into making the choice to have or not have treatment. I had so many tell me I “HAD TO HAVE TREATMENT!” After having gone through this, I have regrets that I did. I have basically given up a year of my life to this. The medical profession is making great strides in managing cancer. Making your life have quality in dealing with this dreaded disease. I do know that should cancer ever cross my doorstep again, I will work with my doctor to manage it. I will not give up this kind of time again to a disease and a treatment that you don’t know if it has worked or not. On top of the fact that we don’t know how many years it may have or did not gain for me, the distress was more than I wish to see again.

That being said, here are some things I dealt with or got to think about in going through this. I have shared this with others and it has given them some idea of what may come. Not that it will or does for everyone, but I found being prepared for everything helped with some of the “what is to come.” And it will show you who have not gone through this some of “that which may occur” during the journey.

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My helps

Drink plenty of water. If you think you have had enough, have another. It really helps.

Munch some nuts, have a piece of cheese, eat a protein bar. Snacks help with protein. I had several quick snacks around. Sometimes I did not feel like eating, but protein is soooooo important for white blood cells.

Lotion, stock up! When you get dry, you get really dry. I was using a bottle a week. I was a crispy critter!

Have someone to call when you feel blue. Sometimes the chemo makes you feel depressed, when in fact it is just the therapy that is bringing you down. Have that someone to listen when you are here.

Know that no matter how you feel, or how you think, the therapy will come to an end. It just seems insurmountable sometimes. It really will get over!

Activia yogurt was a life saver. Diarrhea and constipation are both problems during chemo. This really helped. I started eating it one week before my first infusion.

Biotene toothpaste and mouthwash really were a blessing. The regular of these were too strong and minty. Burned my mouth.

Tell your doctor or nurse about any and all side effects. They may have something to help relieve them! What is a side effect? Anything that isn’t normally in your body actions.

Do NOT be afraid to talk to your doctor about anything to do with this. And that basically means everything. When you are in chemo treatment, it will get into every cell in your body. So, ask about anything you question, don’t be afraid. That is what your doctor is there for. Anything that bothers you, you should ask about.

I found my nurse navigator was a blessing. Also the doctor’s nurses are wonderful. The infusion nurse – a lifesaver! See if you can get their email address. This was great when I had questions in the middle of the night, or something hit me out of the blue. I could get it off to them, and they always came back with an answer. It wasn’t immediately, but usually in a day. However, if you have pain, or excessive diarrhea, or anything excessive, you need to talk to the doctor. I actually used the emergency room a couple of times when things got really bad.

If the doctor prescribes pain pills, take them. My doctor told me, “Don’t be a hero. Take the pills.” The sleep or rest you get with these pills helps your body deal with the chemo. This helps you heal. TAKE THE PILLS!!!

Some good websites:

www.breastcancer.org - keep in mind that there is much great information here. I got discouraged because those on the site were either just diagnosed or diagnosed for the second or third or fourth time. It took talking to my doctor to relieve my mind. The people cured leave the site when cured. The people on the site are in different stages. There is a whole wealth of people that are cured and going about life!

www.heavenlyhats.com – A great site that will send you a hat to help with hair loss. Very cool. Helped with the summer heat!

www.chemoangels.net – These are great people. They have an angel for you. Your angel sends words of encouragement. This was great to have those positive words. Sometimes it was hard to find any myself.

www.cancercare.org – Another site with good information and helps.

Financial Assistance –

http://www.chasehawks.org/
http://www.modestneeds.org
www.cancercare.org
www.cancer.org
http://national.unitedway.org

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The following was conpiled from a lot of different people on breastcancer.org and has a lot of useful things in it. Some of it may be too much information for some, but I think it all is good information so it is not edited from its original text.

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These are not cure all's for everyone but try them if you're having a problems and see if they work. If not contact your physician and get a remedy for your problem.

These are suggestions from all over the site not just mine or my opinions. They're just tips not cure alls.

Fruits and Vegetables
Do not eat anything from the fresh fruit or produce section of your supermarket that has not been cooked. For example: No raw vegetables of any kind, salads, fruits etc. Do not eat salsa's dips etc that have not come from a jar or can. Potatoes, onions etc. etc. If you can't cook them, don't buy them to make. All veggies and fruit they prefer we eat from a can while doing Chemo. Don't go to the salad bar at Sizzler or any other place and eat what did not come out of a can or jar. Reason being is bacterial infections. We take antibiotics for them usually for 7 days after chemo but just one infection can be detrimental to your health at this point and believe it or not you will be absolutely more prone to get one at this point than anytime before in your life. If you're not going to heed this warning then at least take all your fruits and wash them thoroughly and scrub with a vegetable brush and peel before eating. This will cut down your chances but I personally wouldn't take the risk right now. I'd rather eat from a can then get sick on top of being sick right now. It's your choice.

The advice you gave is excellent and everything you mentioned I've been told. Avoiding fresh fruits and veggies, especially from salad bars is very important on low WBC count days, which tend to begin around Days 5 - 6 on some treatment regimens. If the raw fruits and veggies are not thoroughly cleaned they can be very problematic for us. So I have been very careful to avoid them in those early days especially. Typically, veggies with thick skins such as oranges and bananas pose less of a risk.

My doctor said to only worry about fresh fruits and veggies if your white blood count was down. They say it’s lowest on days 10-14, so my intent was to avoid them during that time. However, she said it was not necessary unless your blood test indicated it was down.

Mouth Sores or Thrush
Don't forget your Biotene toothpaste and Mouthwash and use several times a day to cut down on getting mouth sores and keeping them at bay. Remember that Chemo will remove the saliva from your mouth. Sucking on popsicles throughout the day or homemade smoothies work well too. If you haven’t already done so before Chemo try to get to the Dentist and have your teeth cleaned.

Fluids
Drink a minimum of 64oz of fluids daily. This can be in the form of water, popsicles, Jell-O products etc. Don't think you have to bloat yourself on clear water itself.

Protein
I have been seeing a nutritionist and we met today to review my diet. She recommends that I eat 90 grams of protein a day during chemotherapy, as well as eat foods rich in antioxidants, and taking a multivitamin. She recommends shakes with about 25 g of protein, for those days when appetite diminishes. In addition, she told me that too much of a laxative is actually not good for the digestive tract, as it can become dependent on it. She says it is better to use a stool softener such as Colase, as it actually draws water into the small intestine. The key is definitely to drink 8 - 12 glasses of non-caffeinated, clear fluid per day to keep the system moving.


Metallic Taste in Mouth
For those with the metallic taste flavored waters seem to work better than clear water for that, but no food items have been mentioned here for that problem yet. Maybe some of you might have suggestions.

Breakdown of your Skin or Sores or Blisters
Chemo will break down your skin. Purchase bottles of Cytaphil lotion and not only use it on your hands, feet and elbows like we always do but your entire body after a bath from head to toe. This can avoid the dreaded rashes, itching, leg and arm blisters etc. Wal-Mart makes a generic version of the Cytaphil for about $5 a bottle as opposed to the $12-$15 normal price.

Anti-Nausea Meds and others
Remember to take your meds always as prescribed. Don't make the mistake of not taking something because you're feeling better and don't need them. Big Mistake! Especially when it comes to the anti-nausea meds. You'll pay for that one believe me.

Loss of Appetite
If you feel like you don't have much of an appetite and are worried about your protein intake buy some Vanilla Whey and start downing some protein shakes. You must keep your protein intake up.

Exercise
Remember that cancer doesn't like exercise, so the more you can do even if it's just walk the better.
Finally, I was told that for those who have had axillary node dissections, it is important to continue to do your exercises regularly. I had stopped once I obtained a full range of motion, and lately my arm began to get sore again. So it needs to be stretched some more and I had to start doing them again.

Scar Tissue and Stretching
Massages are good for scar tissue and try to stretch out those underarm muscles a bit to help relieve some of the after effects of surgery and the removal pain of those lymph nodes being taken out. Those with nerve damage I can tell you this. I have a lot of it under and around my arm, but after 2 months already it is about 1/3 back already so there's a light at the end of the tunnel.

Pain and Sleep Meds
If pain meds and sleep aids aren't working keep complaining till you find something or the Dr. prescribes something that works. We're our own worst patients. As women we sit back and take it and wait till the next appt. 2 weeks from now. Get on that phone and call for a new script. No need to suffer if we don't have to.

Headaches or Sinus Headaches
Headaches or Sinus headache feelings from either Decadron or Cytoxin take 2-3 Tylenol before Chemo. Keep taking them after if your headache continues. Ibuprofen works well too.
If that doesn't work try a pain pill. Other than that contact your Dr. for something stronger. Also you might want to have the Decadron or Cytoxin infused more slowly next time trying to avoid the effects a bit more.

Urinating
For those using the bathroom and only dribbling. I'm beginning to see that it's common here to go again once you stand. Maybe someone has suggestions on this one because I sure don't at present

Water Retention
Keep legs elevated as much as possible to prevent water retention.

Here's something good for that bad taste.....
Chocolate covered Altoids (strong and chocolaty!)

Diaharrea
Try Immodium - If that doesn't work talk to your Dr. about a script for something that does work.
Some of the posters on the Feb cruise, as well as the "getting ready for chemo" thread, recommend immodium.

Stomach Cramps
My info on side effects list stomach cramps as very, very serious. Contact your Dr. and go to the ER. This was what I was told upfront.


Urinary Tract Infections-or something that feels like it
My last chemo I had a terrible time with what I thought were urinary tract infections - that often couldn't be diagnosed. My onc would prescribe antibiotics as a precaution - but usually couldn't get anything to 'grow' in the tests. Now I realize it was irritation from the chemo. The tip I saw was to keep a squirt bottle of water in the bathroom to cleanse the area after you are done urinating. In the middle of the night last night the old familiar burn began - so I ran and got a water bottle and had immediate relief. I have used it ever since and it has made a huge difference. A real Godsend. I am going to have to get a little bottle to have in my purse so I can use it when I am out and about!

Keeping blood counts up
Another tip for keeping blood counts up I read on another thread is to drink 100% Concord grape juice. Don't know if it works - but I bought a bottle - couldn't hurt!

Avoid fast food restaurants. You don’t know how long the food has been prepared.


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Now, I am done with this portion of the education part! lol Next, on to radiation. A whole different game in itself.

I was very sad. The fever meant I would not be able to have chemo. They want you in the best health when you get infusions. I had resigned myself to putting it off. To making this journey longer. I would call Katie and tell her I was ready to wait a week to get this fever under control.

I called Katie and told her my decision. She said she would call Dr. Hope and talk to him about it. This was Wednesday.

Soon she calls back. She has talked to the doctor and he wants me in Billings for my last infusion. Then he wants me to see a surgeon to have the port removed. He thinks it is infected and that is what is causing the fever.

Now I call Chris as Mary Lou is out. I explain what is going on and she is going to make appointments. She does what she can. I can get into the surgeon on Friday. So, I can get my infusion Friday and then go to the surgeon. Okay. I will get this done close to on time.

Off to Billings I go on Thursday. I am meeting Lynette for lunch. We will eat at the cafeteria in the hospital. I have a morning appointment to have a dexiscan. This is to determine my bone calcium density. If it is low enough, I can get into a trial for the hormones that will follow for five years. We are meeting her boyfriend and his parents.

Lunch was great. For some reason, I have found a place where I like her boyfriend. Am I becoming more forgiving of peoples’ traits? I don’t know. I do know his parents are a kick. His mom and I have good conversation. His dad is sweet. Lunch is, well, a meal.

On Friday, I go to get my infusion. Not happy. I hate them, can hardly wait for them to end. It goes okay. The doctor stops in at mid infusion and asks if I am ready to “graduate” off the chemo. I tell him it won’t be graduation until I am through the next two weeks of hell. He smiles and leaves.

This chemo has gone as all the rest of the Taxols have gone. Vitals more than frequently, too many drugs, too much time, just too much, too much. But this is it. The last. The final. May I never do this again. If cancer comes back, I will look at managing. I will not want to do this again. My patience wears thin, very thin.

Finally, I am done. Now off to the surgeon. He will remove this nail that has kept me tethered (in my mind anyway). It is late. 4:30 pm. Most sane people are going home. I am their last appointment for Friday.

The nurse takes me back to the room. We talk as she gets me ready. Then the door opens and there stands a . . . well . . . a babe in the woods. As I look up I say, “Oh my gawd, you’re 12.” He looks younger than Clenora’s oldest. He’s so young. I then say, “Everyone who does a good job gets candy. There are already three people in this hospital that have not received candy.” He asks who they are. I tell him its none of his business. He is charge of his own candy.

Now the game begins. I quiz him on his life. I quiz him on his experience. I quiz him on his family. He is married. No children. I ask about his wife, he says she likes horses, but he is not too keen on them. I say, if you want this marriage to last remember one thing. He says what. I say – when momma ain’t happy, ain’t no one happy. He laughs. He says he has kind of already figured that out. He also tells me that he is low man on the totem pole. That means he takes all surgery when everyone else want to do something. He gets the late night appointments. The problems like me. And I feel better about him the more we talk.

We get to a point where the lidocane is not keeping ahead of the knife. I let him know and he pours it on. Soon the port is out. They will send it to pathology and let me know the result. I ask that it be sent back to me. They say okay. He does a good job and I had a good conversation with him. As I get ready to leave, I give him candy, and a slinky, and bubbles. He smiles. I then ask the nurse how many are left in surgery. She says three. I leave candy and bubbles and slinkys for all. Smiles as I leave. We are finally done with chemo.

Life is looking better already. Even with the next two weeks of hell ahead of me. And they went just the way the rest did. Worse and awful. Too much pain, too much ache, too much tired. But it is over.

After having had the first Taxol infusion, I was actually doing quite well. Friday went well. I didn’t feel too awful. I stopped to pick up the dreaded Nuelasta. Then spent the day puttering. Things like watching grass grow, petting puppy heads. Nothing too serious. I was still dreading the shot, but not at the point of not going at all. This doctor has changed my thought process.

Saturday was spent visiting and deciding when to go to the hospital to actually get the shot. I knew there would be some pain but I wasn’t hating the thought of it. Finally, I felt I could put it off no longer. So, off I went. No problem.

After the shot, I was fine for a little while. But then I felt twinges of the pain to come. I remembered what the doctor said about the pain pills. I took one. It didn’t touch this pain. So, I took another. After about an hour, the pain started to subside. The pain was in my bones. It felt like knives scraping my ribs, my arms, my legs. My neck bones hurt. After the pain was reduced, all I could think of was sleep.

The next seven days were pretty much gone. I was up enough to get something to eat – keep up your protein, and something to drink – flush the chemo from my body, keep hydrated. I was starting to get worried at seven days of this. I was worried enough that I emailed Mary Lou and asked if this was normal.

At noon, my phone rang. It was the doctor. He wanted to call and let me know that what I was feeling was normal. What he said was, “I know this sucks. Just hang in there and you will get through this. We will get you cured.” Now I am in love. My feelings about this doctor were right. He has changed my attitude, and he has given me hope. Dr. Hope. He has a name. When I finally was over the pain for this round, I emailed Mary Lou and told her I finally felt I had a medical TEAM helping me through this horrid journey. And that’s how I felt. I was no longer alone on this journey. I knew then I could get through this.

I have been struggling with writing this portion of this journey. A lot of that is because I don’t remember much except the pain and percocet. I do know the steroids kicked in and I turned into an extremely mean person. I only know that as I was told. And I lost some friends (or maybe they weren’t) because of the “new ugly” me. I now know what “roid” rage is.

Ironically, around this time, Clenora had an accident and was put on steroids. They treated her as well as they treated me. I went to talk to her and she ripped me a new one. I was taken aback and then realized what had happened. I decided I would walk softly around her for a while. Well, she finally went off them and was her old self. I told her I understood what she was going through. Oh, and that her family had my utmost sympathy!

Some things that did happen in the last two months.

I contracted bacterial pneumonia. Ugly. The PA at my local hospital and I became fast friends. He and Dr. Hope both wanted me in the hospital. I told them both if they insisted on using the H word, I was done. They elected to let me heal at home. Then I ran into a time when I couldn’t breath – at all.

That was interesting. I was rushing at the pace of a snail. I called the hospital and told them I was coming. Now, I live three blocks away. When I didn’t get there in five minutes (I was really moving that slow), the front desk person called and offered to come get me. After I arrived she said she didn’t know if she should come to my house or not. I am a bit of a recluse and do not encourage company. She elected to wait another 10 minutes before coming. Finally I walked in the door, much to Pam’s relief. It was caused by my lungs holding in bad air and not being able to bring in much oxygen. So, it all ended with a laugh, but it was quite scary at the time.

Then the fever started. The week before the last infusion. They worry about that so much with chemo. With the chemo killing your white blood cells as well as everything else, it leaves you open to horrid infections of every type. I called Katie and told her what was going on. She said she would call Dr. Hope to see what he wanted to do. I told her that hospital was out of the question! She told him and he told her he was amazed at how much I didn’t want to go to the hospital. So he sent me back to Doug (the PA) and they arranged a battery of tests and poking and prodding to see what was wrong. An antibiotic was administered. Chest xrays, unltrasound, temps, blood tests, urine tests. I got to enjoy them all. Yet the high temp hung on.

Now I am on to Taxol. This must be some chemical. What I found out was that they change chemicals for a reason. The first chemical will kill most of the cancer cells. The second, well its there to get the cells that became cancer on steroids from the first set. Cool. This one must be a hummer.

We wait for the infusion nurses. The waiting room here has a puzzle table. The puzzle is about half finished. People spend a bunch of time here. It isn’t very long and the nurse comes to get us.

She takes us down a hallway to a room. It is small, but has enough chairs for Mary, Gloria and myself. There is a TV and magazines. Windows to look out at the street. The lights are off.

The nurses come in to start the infusion. I ask if we can start it and then let me wheel it with me to x-ray. They say no, they are afraid that I will have an allergic reaction. I say that I think it should be okay, we are in a hospital and I should be able to find someone to help if I do have a reaction. Besides, I have Gloria and Mary there to keep an eye on me. Alas, they are not going to let me do that. I really just want this to not be extended out any longer. The infusion will take four hours without the distractions. I don’t want to be here any longer than needed.

I then explain about the ativan. Explain that it is the best interest of both my well being and theirs. The ativan keeps my anxiety down - both for my nerves over the infusion and the lack of nicotine. I tell them they will like me more if they give it to me. They go ask the doctor, and he says okay. Then comes the lidocaine to numb me before they put the needle in the port. The nurse asks what size needle needs to be used – a 10, right. I agree. Later I learn that Katie uses a 4. The 10 are much, much larger. In goes the lidocaine. The needle is next and they have a hard time. She gets it inserted and says, “Boy, your skin is very tough.”

Next comes new stuff. First Benadryl, then anti-nausea drip, then ativan. They get these initial things done and tell me I can now go to radiology. I start to get up and just about fall over. I have not had this kind of problem before. Katie later told me the Benadryl is to prevent any swelling, but it also does the same thing ativan does. So, I am pleasantly stoned. I get my feet under me; the nurses ask if I want a wheel chair. No. I will fall over before I use a wheel chair. I have Mary and Gloria. They will save me. Off we go.

We get downstairs and they request that I change. Then onto ultrasound. It’s interesting to see what the tech is looking at in my leg. She really has to bear down on my leg to get the picture she wants. You can see the blood pulsing through the vein. She finds no clots. Off to x-ray for the chest film. That takes about five minutes. Everyone again gets candy. Sometimes it’s the only joy in the process. Smiles all around. One tech was hoping there were none others getting candy. He smiles and fakes a pout that everyone got some.

Back we go to the infusion center. They start the Taxol. As it will be a while, I send Gloria and Mary to go shopping. They leave and I settle in for a nap. I just get comfortable when they come in to take vitals. This will go on every 15 minutes through this process. I never get anything that resembles a nap. If they are not taking vitals, I am buzzing them because the IV has finished a bag. So much for a nap.

Soon Gloria and Mary are back. They have had fun. I am just about done. We sit and visit for a short while and it is finally time to go. Yeah! Finally some shopping. There are a couple of second hand stores we are going to check out. I need to stop at Walmart as well. I am looking for hats for the Positive Girls’ Club. We are going to have another party.

We get through the second hand stores and go have supper. My favorite. Fuddruckers. I have been craving a good burger. They have the best. They do not disappoint me. This is heaven. Grilled just the way I like – medium rare, lots of flavor. I eat until stuffed. Now to Walmart. It’s getting dark. We go in and start shopping. Mary says she has to go to the car. She is fading fast. She goes out while Gloria and I finish. I lose her, but know we will get together soon. As I check out she comes to find me.

There is a furious rain going on. We get wet going to the car. But we finally get on the road. Mary visits for a few minutes, but soon sleeps. Gloria and I visit on the way. Overall the day has been good. I have enjoyed having both of them with me. It has helped the day.

We get to Mary’s and I decide to drive home. Moving stuff from vehicle to vehicle ends this day. Mary wants me to call when I get home to make sure I make it. An hour later I am home, call Mary, and decide all but the refrigerator stuff is going to wait until tomorrow. My bed is calling and the dogs are happy to see me.

I go to sleep with happy tails beside me.

So now I am at the end of the AC chemical, I am at the most horrid place. I know I can’t go on with the treatment. Man, it hurts, it makes me miserable, I have no trust or confidence in my doctor, I am just done.

I get a phone call from one of my angels. Yes, I can change doctors. There is a new doctor coming from California. He is a specialist in breast cancer. I can take one Taxol treatment, but he would not let me take another unless I meet with him. He won’t be in Miles until after the second treatment is scheduled. The nurse says that I could meet with him before the next treatment and have the treatment in Billings. I say sure, that way I won’t miss a treatment and extend this trip to Hell anymore than it already is.

I have asked Gloria and Mary to come enjoy the fun. They are happy to join me in this. We can go shopping, eat something good. And laugh, a lot! They live in Hardin, 70 miles away. I can get there early enough we can get to Billings, have breakfast, and then meet with the doctor. I am at the point that if I don’t like this doctor, I am done.

The day of the appointment I am up and on the road at 6 a.m. This way we will get to Billings in time for the appointment. I get to Mary’s and she is ready. We wait about two minutes for Gloria to get there. Gloria is driving so off we go.

We get to Billings in plenty of time to have breakfast. When we are done, its just minutes until the appointment. We go to the parking lot for the clinic and get ready. We need tiaras, candy, and all the other goodies I carry with me. I have presents for Mary Lou and Pat. Also, extra tiaras. You never know when you might need an extra. We don our tiaras and are ready.

I tell them as we walk to the clinic that they are welcome to ask any questions they might think of. I also tell them modesty is something I no longer have, so if the doctor wants me to undress, they should be ready.

We go to the desk for oncology and check in. We have been handing out candy on our way. I am glad I brought three gallon bags worth. There are many more people here than in Miles. Of course, the smiles are here as well. I am still amazed at how happy an adult can get when you give them a sucker, taffy or starburst. Definitely a way to find joy.

Finally, it’s our turn. As we go into the office, there is a woman there who you can see is fighting this deadly thing called cancer. She wants a tiara. Gloria and Mary give her one and help her put it on. She is so happy to have her own.

Now into the doctor office. They take us to a room toward the sunshine side. The sun is coming in the windows like smiles. We wait only briefly and the doctor comes in with a new nurse navigator. The appointment begins.

The doctor introduces himself. I hand him his candy. He answers questions, asks questions, inquires about treatment. I explain all the things that are going on in regard to side effects. I have been coughing since a week after treatment begins. He orders chest x-rays to check on this. In his exam he notices one ankle swollen. I explain that it has been that way since I started my high blood pressure med. He orders an ultra sound to check for clots. We talk about all the other things that are plaguing me. I ask about the sound of blood pumping through my ears and if it is normal, it is driving me nuts. He says it is. None of these things were even addressed by the first doctor when I spoke to him about them. I am really starting to feel good about this doctor. And I find he has a sense of humor. Really helps my attitude. We talk together. He never once talks down to me or ignores any of my questions or comments. He is getting points as the appointment goes on. We talk more and I learn he just recently arrived from California. He has a family and two children – 5 and 11. He really likes Montana so far, and so does his family.

When we are close to finished, he asks how I am doing with the percocet. I was prescribed percocet when I first started this journey. I took a couple, but quit when it made my brain detach from my skull and rattle around in there. I explain this to him and he said, “Don’t be a hero. You need to take them as it will make the pain less and help get through treatments.” He also pointed out this helps my healing process as well. I say okay.

I ask Gloria and Mary if they have any questions, they don’t. The doctor says he is changing the meds I am taking with chemo. One change I am not so thrilled with is the addition of steroids. I wonder about the effects of this, but I am feeling good about this doctor, I will do what he wants. So, now on to chemo. Chris, the nurse navigator, will make the needed appointments and meet us in chemo.

As we leave, the doctor says he is going to keep the candy as he likes that kind. I told him that was what he was supposed to do. And besides, he earned it!

As we wait to be called for chemo, Chris comes back with the times. I will have a short while until the appointments. We can get the chemo started and then have the appointments, then back to chemo. Chris then says she wondered what the appointment would be like with the doctor and me. She said when she walked in and saw three grown women with tiaras on, she knew it would be okay. I laugh. Then I wonder what is in my file that would make her wonder. Hmmmmmmm.

The first Taxol is next.

Okay – I didn’t drop off the face of the earth. The first chemo was the best, it went downhill from there.

Katie continually talked about cumulative effects. Well, that wasn’t an understatement. Everything got worse. I found nausea the second infusion. Then there were more and more SEs. When I got to the second chemical – Taxol – it was really bad!

I was ready to quit all of the treatment as Taxol got closer. I finally asked the nurses if I could change doctors. Maybe a new doctor would help. The times I met with Dr. Deaf, I received no answers to my questions, no empathy for what I was going through, no confirmation that what I was going through was normal, no nothing. I was ready to stop and he was not helping. I either got the lecture, “Breast cancer is systemic . . . “, or he would just stare at me. My last appointment with him I went in with no expectations from him whatsoever. What I got was him telling me what a hero he had been at a children’s hospital. Must have been because the kids are used to being told what to do. That was the final straw. I just can’t imagine him working with children.

Now I can’t even begin to say how hard chemo is. I also have to say, everyone experiences this differently. There were people having the same chemicals that took it well, or were worse than I. The whole cancer journey is a very personal one. It starts being different at diagnosis.

Let me tell you about side effects. I knew I would lose my hair, but no one told me your hair follicles hurt when they died. I would go to sleep and if I moved my head, it felt like someone was putting hundreds of pins into my head. OUCH!!!

When you lose your eyelashes, they seem to come out at night and fall into your eyes. Then when you wake up, it feels like glass in your eyes – and its not budging.

The chemo makes your body so tired, you feel like you are depressed. Naps are mandatory.

Food changes. The smell, the taste. All of it. Before I was very far into this, I was down to nuts, peanut butter, and hamburgers for things to eat. I forced myself to enjoy a smoothie with lots of fruit and yogurt in it for breakfast. But it tasted yucky. And forget spices, most of them were too much for me.

Smells were heightened. I could smell the pan getting hot if I was cooking. I could smell the burners heating up. It all smelled awful. Then you have the nose dead people that insist on using perfume. You know them, their noses are so plugged from the amount of perfume they put on that they put it on until they can smell it. Which means about a half bottle. These are the people that are keeping some of the perfume companies in business. I think mostly the bad companies.

My skin was so dry. I was using a bottle of lotion a week trying to make myself less than a crispy critter. I couldn’t slather enough on.

Chemo brain. You actually start losing your train of thought. At last I have an excuse. But it was not as fun as I would have hoped. I ended up writing down my pets’ names so I wouldn’t forget. I couldn’t remember who I talked to or why. I couldn’t remember where I put things, what the plot of the book I was reading was, who I talked to on the phone (thanks for caller ID – not that I remembered any of the conversation). Everything in my memory seemed to go.

On a personal note, when the chemicals finally got around to burning my uterus, I couldn’t believe the pain involved. Cramps had nothing on this. They said this would force me through menopause, I guess I didn’t believe them. Or maybe I was hoping for an easier time. No such luck.

One other thing. The nurse that administers the chemo wears a hazardous materials suit. This stuff is so toxic, that if it spills on them, it will burn and may actually start to eat away at their body. They were putting this stuff in my veins. Now doesn’t that sound fun???

The list goes on. That dreaded Nuelasta got worse and worse. This is the shot that makes my bone marrow produce white blood cells. It is amazing how your bones can hurt. When I was getting the shot the next day after chemo, it was about unbearable. I said something to the doctor, and he suggested it be done two days after. This made it a little easier to take. But it still was the pits. It got so bad that when I went to get the Nuelasta on the second, third and fourth infusions, I sat at home and cried. I sure didn’t want that pain again.

This was when I decided that I was about through with the whole shooting match. I would rather die than go through any more of this. I must say again, until you have been there, you can’t believe how horrid it can be. I knew I couldn’t take any more!

Next, I will tell you about my doctor. A change was coming.

Well, I thought it was time to update this journal. The chemo has not been treating me well. I needed a cancer break. So, no updates for a while. I am now half way through the chemo and it has been ugly. I will need to back up before getting into that as you need to know the rest of the story. As I recall, we left off just before the pizza and a buzz party.

Tina, Sara and I started the evening having some fun with my hair. Tina and Sara put my hair into small braids, with colored pipe cleaners woven in. They then used hair glue to make my braids go all over. Kind of a Pippy Longstocking thing. For the final touch- walah – Glitter colors were sprayed on. As we walked out the door, we grabbed tiaras. Everyone was getting one that came. As we walked in the restaurant with tiaras on, only a few looked at us oddly. I think everyone else was thinking, don’t look it will go away.



The party was wonderful fun. There were around 19 people there. They were all women except for Rocky, Kay’s love. He fit in perfectly and was a blast to have there. I say he is in touch with himself as he was the only man invited that dared to come. Attendees were Nancy, Clenora, Mona, Calene, Cheryl, Angie, Sharon, Caroline, Sharilyn, Mary, Gloria, Rocky, Kay, Dixie, Betty, Christy, Sara, Tina, and me. Pizza was on the table when everyone got there. We had the upstairs party room and it was a beautiful evening with the sun coming in.

Games were in order and we played some good ones. First everyone had to take at least one candy from a bowl, but not more than five. After everyone had their candy, they had to tell the group one thing about themselves for every candy they took. Most had taken two or three, but the thought of chocolate was too tempting for some that took five. No one knew what was coming with the candies, so it was interesting to see their faces when they found out what was going on after they had them. I thought this was a good ice breaker. It was also a way for everyone to kind of get to know each other.

For as small as this town is, it is amazing that many didn’t know each other, or didn’t know more than a person’s face. I am finding I have a very eclectic circle of friends and am proud to have all of them as friends. I have never really been in any particular part of the world – you know, a cowboy, or artist, or Ms. Got Rocks, or any type like that. So, my taste in friends shows that. What wonderful people.

We played a couple more games. The story game. You know where someone starts a story and everyone adds to it. I gave it a twist – you could only use 5 or 6 words on your turn. Turned out hilarious!

Then we moved onto “I have never.” Everyone started with three candies. Then we started around the circle. Each person had to tell the group “I have never – then whatever they have never done.” It was a hoot. There were a couple of mothers with teens there and the teens were honest. There were probably some conversations later that night! The game was won by the very last person, Nancy. She said “I have never been drunk.” Boy did she end up with a pile of candy! I don’t know if I could ever pull that game off again – well, at least with Nancy there.

Then we cut the hair. It was funny. I brought my dog clippers with the surgical blades. At first, everyone cut off the braids. Sweet Caroline actually took one home. I must say, though, this was her seventh cutting. She is still in high school. So, she really has a collection going. I must say with one in every seven women in the USA getting breast cancer, it isn’t that outrageous. I told everyone that at the party, and you could see them looking at each other. Wondering – who’s next. After the braids, it was down to shaving. Only a couple did not participate. But there were bad jokes all through.



Last but not least were two other exercises. The first everyone got a long piece of paper. On that piece of paper they were to write their name. Then they were to hand it to the person to their left. That person had to write something positive about the person whose name was on the top. Everyone got to take home a list of good qualities and positive thoughts about each other. It was wonderful. And last but not least all signed the guest book, with words of encouragement and positive thoughts. A group photo was taken. They will be given to all participants. I haven’t had quite the energy to get them all done yet. But notice - tiaras all around!!



So, enough of this party. I will close for today. Hopefully, I will get to what was next in the next day or two.

So I wake and feel a minimal amount better. There was a little sleep for me last night. The aches are just a little duller. The headache not quite so pounding.

I call Katie. I tell her how bad it all feels. I tell her I took a shower and the skin on my body is turning to leather. She asks from what. I say I think it had something to do with the poison she put in me. She says that is probably so. She says what I felt was normal. Then she says we will see you tomorrow. Tomorrow? She says I have an appointment with the onc. I told her I didn’t know about that. She said someone had scheduled it. I am glad (I think) that I called.

Tuesday morning I get ready to go. It’s a nice day and a good day for a drive. There was moisture the night before and it had frozen in places, but I was traveling late morning and most areas were thawed. The appointment is for 11:45 and I am enjoying the drive. I feel better – not great but better.

I get to the Clinic in Miles City and check in. I make sure they know at the desk that when an appointment is made, they should let me know. The woman says they didn’t tell you. I said no. I also told her that I live in Forsyth and I have to have a little time to plan for this. She says she will let whoever scheduled know that they are not following up on their appointments.

I hand out suckers and see smiles again. Tink is with me as well. I sit. The nurse comes out and tells me the onc is behind. I tell her I am in no hurry.

Finally she comes to get me. She takes vitals. Lost five pounds since Friday. Blood pressure is lower, oxygen level is higher. She says these look good. I tell her that’s what happens when I am not rushed. She says when the onc comes in to take all the time I need to talk to him. I think, well maybe this will be different than my last meetings with him. She says the onc will be a little late, but he will come. I say okay. Then I wait.

Finally he comes in. He sits. I tell him about the pain. I tell him about the fact that my shins are aching. I tell him about a cough that has come in the last two days. He has me lay down, he knocks on bones and listens to my lungs. He says that he will move the day of the Nuelasta one more day out and this should take care of some of the pain. I said that would be Saturday, he said yes. He also says that after the third or fourth injection, my bone marrow should be so tired, it won’t hurt near as much. Oh, joy. I wonder where I can get a shot on the weekend when nothing is open. I explain to him that Katie has been kind enough to arrange those shots in Forsyth and it is convenient for me and does not cause further costs to me. He said he will talk to her about it. He also says that if this doesn’t help, he will put me on every three week infusions, which means another two months of this torrid journey. Then he asks how the roads were. I tell him good. For the first time in this meeting I feel he listened. He leaves. I am left in a fog. I was going to talk a little more about this with him. I hope he comes back.

Soon Katie comes in. She has her scheduling book. We talk about the Saturday shot. She doesn’t know if that can be arranged in Forsyth. If it can’t, my infusion days will be changed to Wednesday. Unless I want to drive back to Miles City on those Saturdays. She says she will call and let me know what will happen. I ask if the onc was coming back, she said she didn’t think so. I guess he determines how much time I need and what questions I need to ask.

From the beginning with this onc, he has not listened. He just seems to know what he wants done and how it will go. I decide three things that day. 1. I will continue to go to my doctor when I need questions answered. He has volunteered to help, and he will always answer my questions and get the information I need. 2. I will no longer say a word about the pain. I can’t afford another two months on this journey that is already going to take six. 3. The onc has earned his name. It is now Dr. Deaf. He either doesn’t or won’t listen.

I wonder if Dr. Deaf acts that way to distance himself from the people he “helps.” I wonder if he has built a wall that death and pain and suffering cannot go over. I just wonder what he thinks about the patients he sees. Has he elevated himself to a place where he thinks he is so much better because he cures people, saves them, gives them life they would otherwise not have had. I wish I knew what made him tick. It would help a little. Everyone believes he is a genius. He may well be. He has high recommendations. I rarely run into people I can’t talk to or relate to. But this man, I don’t have a clue. Because he is good at his job, I will continue to take his awful cure. I will, however, continually refer to No. 1 above. I know DD does not and has not listened to me. He continues to take time and travel from me. He didn’t listen when I told him time and money were both crucial in keeping me in my life.

Later in the day Katie calls and says she and Lucille (the nurse in Forsyth) have arranged for me to get my shot at the hospital on Saturdays. Thank you Katie. Less expense, less time from my work.

As it is now, it looks like seven days out of 14 that I will not be functional – at least functional enough to continue my working life. This is a far cry from the original plan with my doctor to miss only two days – one for the biopsy and one for the surgery. The days continue to add up. The medical profession does not seem to care. I have given most of my worries to God. He is going to have to take care of all of these worries. I have not enough energy to heal and worry, too. It will be amazing if I can get through this without losing everything I have. But we will see.

Date:	2007-04-04 11:49
Subject:	Three Days Into This
Security:	Public
Mood:	sick

I felt good the day of the infusion. I didn’t feel too bad the morning after. The next day I had to get a Nuelasta shot. This is the shot that increases my bone marrow’s production of white blood cells.

On Friday, the Nuelasta shot was trying to get to Forsyth. The pharmacist had ordered the shots, but because of the huge storm, his drug order was in Wyoming snowed in.

I was talking with Katie about the Nuelasta and she then asked if I had any pain killers. She had said the day before that the Nuelasta would make my legs and hips hurt. I looked through my newly accumulated drugs. Until this cancer journey, my idea of a well stocked medicine chest included Neosporin, gauze and vet wrap. That has changed significantly. The pain killer I have will be adequate for the job.

But I digress, the drug is not getting here from Wyoming. The hospital here in town does not have it. The options are to go to Miles City and get the shot. I am puny, don’t have anyone to drive, and am not wanting to go. The hospital then says they will send someone to get the shot.

The hospital finally calls. The shot is here. Off I go to get the shot. I walk in and they give me a pile of paperwork to fill out. Now I know this hospital is part of the same system I have been in all along this trip. You know, the one that has all the wonderful computer files to access from any of their locations. I say, why am I filling this out again when you already have this stuff ten times over. The nurse leaves. She is gone a long while. She comes back and says yes we have you in the system.

Now onto the shot. The shot comes in a beautiful cobalt blue square syringe. It is gorgeous. And it should be. Did I mention the cost of this shot??? $5,000 a pop. I am supposed to get these the day after chemo. My lord, what an expense. Some drug company is making a mint. They probably harvest the ingredients from the almost extinct dreaded white cell marmoset or some such thing.

So I get the shot. It goes in the back of my arm and hurts like the dickens! The nurse says the small shots with power always hurt more. So now I know, not only is this expensive, but its just drops of liquid. This nurse and I will also become friends. She is the one to give me this gorgeous blue container of liquid gold. I say thank you and leave. With what the future now holds, I may quit saying thank you.

I go home and within hours I have a migraine headache from H#%$! I can’t believe how bad it is. Then comes the bone pain. I have never had pain like this that didn’t at some point subside. It is continual and steady. Big and has me in its grip. Katie had said legs and hips, but this pain is in my upper torso. My ribs, shoulders, arms. They all ache. I feel like I am being crushed in a vise.

I think I will try and sleep. I have always been able to hide from pain in my sleep. I go to bed. Bad idea! The bed required lying down. Lying down on ribs, arms, shoulders. That was unsuccessful after about, oh, I would say 10 minutes. So up I go to my chair in the living room. I finally find a position I can sleep in. It is sitting up straight with only my bum touching anything. I am grateful for my hitch hiking in my youth. I learned to sleep standing up then and this skill is proving very helpful.

My night was fitful. My body did not quit hurting all night. I decide its time for the dreaded pain pill. So I take one. I hate pain pills, not that they don’t lessen the pain, but they make my brain come loose from my body and the next thing I know, its bouncing around in there making everything confused. This pill does not touch the pain either. This is a hummer. I decide to try another pill when time and see if I can’t get in front of this pain. It ain’t happening.

I call my friend Gloria. After two days of pain I need something to distract me from this. After a while she has me laughing, which doesn’t help the ribs, but helps my sense of humor. I told her I sure couldn’t see four months of this. It would drive anyone insane. Finally, I feel I can sleep. Last night was little, hopefully tonight will be better. So, I shore myself up in my chair, pop another pill and try to sleep.

I wake up throughout the night. It seems just tiny naps are all I can obtain. I tried at one point to sleep in bed, but that was far worse than the chair. So, back to the chair I went. When I finally have thrown in the towel on sleep, I think the pain is less. Or am I imagining it? Is the pain less, have I just gotten used to it? My head still feels like a truck ran over it. I can hardly stand the light and focusing is not a very good plan right now.

This is Sunday. I am so tired, so very tired. The dogs have been worrying about me. The cats have become blankets, everyone is concerned. I have to get out of the house for a while. After a time, even these walls I love drive me nuts. When you live alone and are feeling puny, you have no one to whine at. So, I go and bless Tina with this sleepless bad attitude person I am now.

When I walk in she asks what I would like. I would like coffee. And to sit at her table. She makes coffee and we talk, about what I could not tell you. However, I am finding the chair comfortable and think I could lean on the table and sleep for hours. And the coffee is good. I do finally go home. Home to my pain.

I try to find something to eat. My appetite is shot. Nothing sounds even remotely appealing. I try this and that. Finally settle on a piece of toast. This is not protein and not particularly great, but at least I get it down. Now to try and sleep. Again. This is more fun than I have had in quite a while.

Through this whole weekend I drink water. I must have between 10 and 12 – 12 ounce glasses a day. This is so we flush that chemo out of my body. Within 24 hours it should be out. But I must keep hydrating. This is crucial. It helps spread the toxic chemical throughout my body and keeps the chemo from pooling in my bladder. This could be deadly. It could damage my bladder.

Maybe Monday will bring relief. At the very least, I will call Katie and see if this is what I should be going through. At least I should get some answers and this will help me face another day.

I go off to my chair. It is fast becoming my best friend. If only I could sleep more than 30 minutes at a time.

Date:	2007-03-29 21:49
Subject:	A Short Post
Security:	Public
Mood:	relieved

Well, got it done. Its over. But let me start at the beginning.

I got very little sleep last night. Went to Tina’s and had a cup of coffee, forgot Tink so we needed to go back to my house. Tina asked how I felt. Told her the terror was unbelievable. I asked how she might feel in my shoes. She thinks about the same. This is a learning process for both of us. We also agreed there would be twice daily check ins. We will both keep track of where my mind and body are. Or aren’t.

So off we go to Miles City. Went to have breakfast at the 600 (a nice little farmer rancher diner). I figured I would make this good. I am unsure when I will want to eat again and these last meals may have to tide me over a while. So, chicken fried stead and eggs. A big cold milk to go with it. As we sit at our window table I look and there is a flyer for the Benefit Auction. My little workers have been here.

I look at the time and I am almost late to see my counselor. Off we fly and I call and say I will be a few minutes late. Tina is going to pick up some roses to plant while I am in with Aliceann.

The appointment goes well with Aliceann. It always does. She has kept me from digging a hole too deep to get out of. She has made me look at my life and see some life there. We talk and finally I ask what I should look for in depression with this chemo. She said sometimes what I might feel is depression is actually fatigue my body is feeling from the chemo. So, I need to evaluate there first. But if I find myself running a mobius strip with a decision or problem, and can’t cut the strip, I should call. That’s good to know. I will share with Tina.

I get done with Aliceann and Tina is waiting in the parking lot. I need ice and water. We go to McDonalds and they mess up the order. It must have been the iced coffee Tina got. We get it straightened out and go to the clinic. The infusion center is to the rear of the clinic. We park in back. TINA WEARS HER TIARA. I just love her for that.

This poses a problem. I MUST deliver suckers. All the people are in front. So, I leave my stuff in the center and go to the front through the building. That’s better, I can hand out suckers. Now the mission is complete – back to the center. I walk through Doctor’s office on the way. Shelly gives me a hug. Suckers all around. Meredith gives me a hug and tells me these are hard choices. Here come the tears. She walks me back to the center. I think she too is afraid I will bolt. I do think she knows I won’t. We go back and then she leaves.

So, I ask Katie what needs to be done. I also told her a shot of anti-anxiety meds would be worthwhile. I feel full blown terror at the back of my head. I wonder if I will start shaking. She gets a doctor’s okay so we are ready. Then she explains the procedure. First the flush, then anti-nausea meds (mainline ativan comes here), then a flush, then the Adriamycin (this is an IV push and its red.), then flush, then Cytoxan, then flush again.

It didn’t take long for the ativan to kick in. I felt a whole lot calmer. Was able to ask questions. We have a long discussion about life, family, and just stuff. I told Katie the book that she gave me was great. She gave me a couple more to read and a DVD. Will review and let her know how I thought they were. The appointment went well, did not have problems with the port. The needle that goes into the port is HUGE. I won’t look at that again. No headaches, no other side effects. Felt well. Actually hungry.

We bid Katie goodbye and off we go. We will see her in another two weeks. I am trying to keep my mind on reactions, none of the SEs (or very few). Katie said tomorrow would be when I started feeling anything.

I was starved. We went to KFC and had a good lunch. We also drove around town a little to see what people were doing in their yards. Some neat things are being done.

Will get a Nuelasta shot tomorrow. This will help keep my white blood cell count up. Will see how that goes.

But now, I am going to pop an ativan and try to catch up on the sleep I didn’t get last night.

Sweet dreams all.

Date:	2007-03-28 23:27
Subject:	ok
Security:	Public
Mood:	scared

Okay. Here it is. The final before chemo post.

I am f(*&^*&^$*& terrified. I didn’t realize this would affect me like this. We are having the storm of the century here and my chemo is 45 miles away from here. I would easily totally quit this sumbich if there is no way to get there tomorrow. They say 2 to 3 feet. I don’t know. Now Tina says, (with Pollyanna hat) we have 4 wheel drive, it’s only 45 miles, and we can do it. Yeah, right.

I discussed with some on breastcancer.org. I will probably be taking my ativan tomorrow morning (first time). At least I will go in calm. And sleep has not been here the last three days. My head is having the life from hell, I am almost to migraine. Haven’t had that since I left my stressful job.

I would like to say something cute or amusing, but there is nothing in my heart right now. I am praying I am strong enough. I talked with Becky today, she is one of my oldest friends. She had a totally sunshine attitude about it. I am tolerant of this, but I am not sure for how long. As a matter of fact, Tina said she is going to wear her Pollyanna hat now, too. BS. I hope I don’t kill them both. OK, I am kidding, but I might hurt them. lol

I appreciate all of the prayers, good thoughts, and vibes from all of you. I know its all to help. I just can't stop the panic. I have been praying myself. 1Peter is my solace now. I really need to let go and let God. One toenail isn't even helping right now. UGH!

Until tomorrow (I hope I can update, if not, be patient!!!)

Just two days. Final efforts are being made.

I had my blood test done today. In the future it will be done the day before chemo. This week I had another appointment the day before, so they consented to two days before.

I picked up my anti-nausea drug. Prochlorp. This too has side effects. The title is Possible Side Effects. Not selected. Some are drowsiness, dizziness, nasal congestion, blurred vision, dry mouth or constipation. If you have any of the following, contact your doctor as soon as possible: sore throat, inability to move eyes, muscle spasm of face, neck or back, difficulty swallowing, mask like face, tremors of hands, shuffling walk, lip smacking or puckering, twisting, twitching, or weakness of arms and legs. Now in combination with the Selected Side Effects list with the chemo chemicals, we are about down to anything that happens to me could be a side effect. Are we having fun yet or what????

Oh, well, two more days.

In reviewing this story, I find that I have given most participants names of one variety or another. I feel I have neglected the most wonderful persons involved in this. That would be the nurses. I wouldn’t have gotten this far without Pat, Mary Lou, Meredith, Shelly, and Katie. So, from this point on, I am officially naming them my “Authentic Angels.”

These wonderful people have been those that have brought sanity to this whole journey. They have listened when the doctors have not. They have calmed my terrors when the shakes and tremors have about knocked me down. They have answered questions that were steady for a while. They have done all of this when I have been a less than fun person. And they have all had a smile or a word to encourage me. They helped me remember anything along this path was my choice. Not anyone elses’. I feel blessed that I have this team of people helping me. They have all been authentic with me on my journey.

Another Note:

I am having the beginnings of panic today. Started with a headache. I know that I have chosen this path, but the unknowns that are coming yet still can terrify me. The fact that I will be putting chemicals into my body that would probably clean a toilet is frightening on its own, but I will be starting with two. Whoa doggies.

It is thought provoking to consider that when I start chemo, they want you to drink lots and lots of water. The purpose of this is to “flush” the chemo chemicals from your body. Then, prior to the infusion, they “flush” the mediport. (And yes, it is still a pain in the patoot!) Then two weeks later, we get to:”flush” “flush” again. Maybe it IS to clean my toilet. Best I can do with this one.

Oh, well. Will keep you posted. I hope to make one more prior chemo post. But until then – One Toenail At A Time!

Tina and I made it to Miles City and found my treasures! What a great thing. And I also picked up all the things recommended for this chemo journey – something for constipation, something for diarrhea, something for sore mouth or thrush, plastic silverware, knit beanies for sleeping, heartburn medicine, protein drinks, yogurt with protein, frozen pops, and this list too goes on.

We are late getting home and I have to leave tomorrow early. I do contract work which consists of checking machinery, equipment and chattels for a lender. I have a long drive to get to where I need to be in the morning. Early up. So I throw my purchases on the table and I go to bed.

I beat the alarm. I usually do. I had a fitful sleep as I was worried I would not get up in time. I need to be north of Ryegate by 10 a.m. I am up at 5, feed the dogs, give them outside time, get my copies made, check my camera, bring in the dogs and off I go. The sun is not yet up and I need to get gas and coffee. Finally I am on the road just as the sun is peaking over the horizon.

I decide to take the north route to get there. This is two-lane road and not heavily traveled. From Forsyth to Roundup it is 101 miles. There have been many times I have traveled this road and not met another vehicle. I will see this morning.

This route takes me through country I love. The first 10 miles are on the river bottom. Irrigated crops and small pastures filled with cattle either with calf, getting ready to calve, or calving as I drive by. A wonder. This circle of life gives hope for a better year. Every year this circle gives hope.

The sun has not yet made it to this bottom and there is a soft grey look to the world. I look ahead and there is a corn field that is being grazed by cows. They look like ghosts walking through the corn stalks in this light.

A little further up the road is a big old cottonwood in the ditch. At the top are two Bald Eagles. The sun is just hitting them at the top of the tree like a spotlight. They play their roles well. They are content and slightly puffed letting the sun warm them.

Off in the pastures to either side of the road are antelope. They look so majestic as they graze, but I know they are not any bigger than a sheep. Looks are deceiving. They have not yet started to drop babies, but the grass here is turning green and they are looking in good shape. They can easily overtake these areas as they are prolific like rabbits, always seem to have at least two and there doesn’t seem to be quite the death loss as deer.

I am now driving up out of the river bottom. This is where I drive into country that humbles and amazes me. High desert plains. You can look and it goes on forever. So many people don’t like Eastern Montana, they say it’s flat. Well, it is flatter than the mountains. I have lived in the mountains for a good part of my early years. Yes, they are pretty. That is if you like up and down and green. And they don’t really have a lot of personality compared to these plains. It looks flat at first glance, but there are rolling hills, soft coulees, cliffs that rise on the edges of creeks in the bottoms. And the vista changes with the weather and season. This country was formed by a huge lake back in the day of the dinosaur. There were four major drainages that worked to form this country. This is hard country, many miles between people, many more between towns. This road is one you really don’t want to have a breakdown on or get in trouble on. Not that you can’t find help. Help will show up eventually. There are just not many people that travel this road, and there are not many farms or ranches to walk to. And cell service is not always reliable.

Just as I break the crest to drive out of the creek bottom, I see the first town, well ghost town. - Vananda. This was a major metropolis back in history. There are two families that live here now. And the old red brick three story schoolhouse still stands in regal majesty, almost guarding the plains from invaders.

Here the sun is out in full force. The morning sun is the one I like best. As it works it way to afternoon it seems to tire and get more harsh. It has a hard light to it. The morning sun looks as if it is just a little gentler, trying out its strength. Off on the plains I see bright white spots. These are antelope. While their bodies are tan, their butts are white and seem almost fluorescent in the sunshine. You can find them easily in the sun if you just look for those white lights on the prairie. The prairie right now is still fall colors, oranges, browns, grays. The green has not yet started. And those white lights show like beacons on these plains.

As I pass Vananda, a Golden Eagle crosses my path. Now, Bald Eagles are wonderful to watch. But a Golden Eagle will take your breath away. They are larger by a good measure than Bald Eagles. Because of their size, they seem to fly with more power and grace. I am always in awe of these huge hunters.

I continue on this journey. As I drive I watch the plains. They change with every trip and there is always something going on out there. Antelope, birds, reservoir changes. The last snow storm has filled every hole and low spot I see. This is good as water in this area is an asset, and with the drought we have had the last seven years, it has become an asset greater than gold. Water is what makes things work out. Keeps all the animals healthy, keeps the prairie green. Every water hole is a haven for the birds and animals in this heartless prairie.

As I look across the plains now, I see the toll this drought has taken on the country. There is no carryover grass to be seen. The ground, which is normally sparse, shows nothing but sagebrush. It is dirt flat in most places. Grazing will continue only if there are spring rains to refresh this area. I worry that the damage already done has taken most of the grasses’ energy for regrowth. I worry that soon this will be dirt flat with no growth. Time will tell. The spring is still young.

I pass a road going north. There are several ranchers on this road. A sign marks the road. It says “Hardy cattle from hard grass.” And that is true. A cow has to be hardy to exist on these plains, even in good years. Put survival with raising calves, and you realize how hardy they must be.

The country is slightly rolling now. The deserted rail line is to my left. Old barbed wire fence lines the road. Falling posts and downed barbed wire. Then suddenly there is new fence. A good four strand barbed wire fence. I watch an antelope consider this fence. I have watched them run at top speed (40 mph) and hit those fences dead on to get through. They slip through the wires like they are air. If an antelope has to go over the fence, he ain’t going. Always through. They either can’t or won’t jump. But they are a streak on the plains when they run. Occasionally you will see them hit the fence and leave some fur behind. I always thought it looked like a puff of smoke behind them.

I come over a hill and there is Ingomar. Another town, this one is inhabited. Ingomar hides in a coulee and you don’t really see it until you are on top of it. There was a time in the past when over a million sheep went through this town every year. It was a major hub for shipping. That was when the rail line was in operation. There are not a lot of people in this town, but it is still a major attraction in this area. All the people from the ranches congregate here. Pinochle parties are mandatory.

The Jersey Lily has the best meals. You have a choice of seven entrée meals. All meals come with beans, fried potatoes and bread. They bring the beans in a pot and you can serve yourself. As much as you want. And the beans are good. I have been here in the morning about 5:30 when they are cooking the beans. What a wonderful smell. I have brought people out for dinner and they eat so many beans that they forget they still have a meal coming! You can order sheepherder hors d'oeuvres as well. A delightful combination of onion pieces, orange sections and cheese, with crackers.

The morning sun is starting to bring more variety to the prairie. Still there are antelope. Everywhere. When you look directly at the prairie, you see the browns, tans and oranges. Yet when you look at it from the corner of your eye, you see a slight tinge of green. Yes, the prairie is trying to come back. One of the reasons I love this country is that you can get the most minimal amount of moisture and sit and watch it turn green. Amazing.

Ten miles more brings me to Sumatra. It isn’t quite a ghost town. It’s a post office and one residence. But if it has a post office, it’s a town. A reservoir that has not had water in the last five years has water right now. It is a bustle of activity, geese and ducks. It’s nice to see water here again. I hope it holds out.

There once was a time Vananda, Sumatra and Ingomar were called the tri-cities. There were many more people here then. It would have been something to see. Now, there is nothing much more than open, empty prairie. I see homesteads falling and rotting away. I always imagine the character and perseverance you needed to come through here on foot, in a wagon, on horseback. It would have been an adventure. I know there are different outfits that run wagon trains today, but back then there was no easy out. You were committed when you took on this journey. With nothing that even resembled a rescue squad.

On across the prairie I go. I can see the Bull Mountains in the distance. Not a large range, but they are mountains. First I must go through Melstone. Now this is a thriving metropolis. Gas station, café, bar and hardware store can all be found here. But don’t drink the water, or the coffee. They have the worst water. UGH! They have both a grade school and high school, however.

Lo and behold – there it is – the first for the year – can it really be? - please sing. A Western Meadowlark. It must be spring!!! The sound of these birds, also our state bird, is famous. It always comes when we are sure there is no more winter, well, nothing that will stay. A smile crosses my face. A serendipity. I thought I wouldn’t see one for a while yet.

I have come to the foothills of the Bulls. The road snakes around the hills and travels along with the Musselshell River. I look and there in a meadow near the river is a herd of about 20 Whitetail deer. Munching along happily.

In the tops of the cottonwoods here are hundreds of nests at the very top. A Blue Heron rookery. I see small bird heads peeking out with mature adults flying around these nests. This is the only time you really see them associate with each other. I have always called them sentinels, as they stand lonely guard on the creeks, springs and rivers around the state.

Ever onward, to Roundup I go. It’s a nice town, slightly depressed, but a nice town. I only saw two other cars on my drive here. Roundup is called that for one of two reasons, they are not sure if it was because the valley near the Musselshell River was a natural place to "round up" their cattle in the fall of the year. Or was it named because it was the ending point of the Texas Trail cattle drives into Montana. Both stories are good ones.

Roundup has all the conveniences, even an A&W. I stop to get coffee and use the facilities. There is a bulletin board showing the big events in town. Dogs for sale, Will do ironing, Need your walk shoveled?, Handyman work wanted. All the small town classifieds in one place. Everyone in here knows each other and its fun to listen to the banter. But, I can’t stay, must keep going. That 10 a.m. appointment.

As I drive out of Roundup I notice a change. In my part of the country, you see black cattle. Black Angus. They are the breed. You occasionally see a white face in the bunch. For the most part, its black. Here are the Herefords. These will always be my favorite. They aren’t all that popular, but I love them for the memories of cattle herds in my past. They were bred for this country and do well in this country – calve easy, find feed when you don’t think there is much, fairly good natured. Beautiful red cows with white faces and stomachs. There are herds of them. I smile at the memories of herds of the past, of being young and moving cattle, feeling the horse under me and smelling the odor of grass, horse sweat, cattle and the wind. Those white faces in the black herds? That is from Herefords. A little remembrance. The calves are red and white spots, most still curled in a ball on the ground, the sun not quite warming them enough for them to get up and frolic.

There are Magpies everywhere here. Home does not show this many, or maybe I have been too distracted to have noticed. The Native Americans believe that if you have Magpies, you will never go hungry. I think the Magpie should be our state bird. The Meadowlarks are nice, but they desert us in the winter. The Magpie on the other hand sticks it out no matter what the weather.

In one pasture I see the leftovers from feeding time. There are several Sandhill Cranes enjoying those leftovers. They are majestic plains birds and are fun to watch in their social circle. With pecking and shoving you can see the hierarchy.

There are Ring Necked Pheasant everywhere. They are a hazard here on the road as right now is the time they try to impress each other. The roosters' heads are so red, they want to get the prettiest hen. It’s at this time when they are so stupid. All that energy being put into mating, and little energy or brains left for survival. I know at anytime one may jump right in front of the car and give me a dent or a smashed windshield. It’s a driving test. With me not knowing all the rules. I drive carefully.

I haven’t seen a pheasant for a while so I speed up. I am running out of time. I come over the top of a hill and there in the middle of the road is a herd of Whitetail deer. I think I am going to have meat for the freezer. I stand on the brakes. Just as I think I am a goner, I look as my bumper lightly taps a doe’s hind foot. Someone is looking out for me today.

The road flattens for a piece. I look out over a meadow and see a prairie dog town. I see the destruction they have caused. The ground is unusable. It is like a mine field for cows. To farm is difficult, you can’t be sure you have gotten them all. They are grossly misnamed. They should be called what they are – prairie rats. They destroy everything, the ground, the vegetation. Those that don’t have to deal with them think they are cute, they want to save them. One rancher I know figures he loses two to five acres of ground to them a year. When it takes 25 to 30 acres of ground to feed one cow, it doesn’t take them long to eat up anything that looks like a profit.

The country is changing again. I look over at sandstone formations through this area. They are beautiful. Kind of looks like a castle playground. Lots of spires and tunnels and lookouts. When I was a kid we spent hours playing in areas like this. Hide and seek was a must here. So many places to hide.

I pass just north of Lavina. Only a few miles to go until Ryegate. And then miles of country roads. I am unsure exactly where to go. I stop in Ryegate at the local store and gas station. I ask and a man who looks like he probably does not get to town much tells me how to get where I ask. I say I am going to the T. He says that I need a direction after that, but I do not want him knowing where I am going, it’s none of his business and I really don’t need that much help. I say good bye and get in the car.

Off I go, North. The road is paved and I think this is too good to be true. It can’t be. It isn’t. Four miles out it turns to gravel. In this country the bedrock is barely under the surface. You kind of want to call this a gravel road, but in many places it is nothing but bedrock showing. I drive at a moderate speed. 23 miles to the T. On this. On bedrock.

As I drive I see the Snowy Mountains coming more into view. Then I see Killdeer playing in the fields. I have always loved Killdeer. The way they run and fly. The way they try and lure you away from their nest when they have eggs or babies. They think they are so much smarter than you. Maybe they are.

Soon, I drive through a farmstead. It is not uncommon for a road to go through a farm or ranch. Always surprises me though. This is a neat farm. I drive. 23 miles is a long way on this kind of road.

I look off into the distance, the road seems to go on forever. At what seems the base of the mountains, it looks like the end. By the time I get there, I have traveled almost 10 miles. Finally, at the T. Left at the T. On I go. Three roads up, is my right. Cross three cattle guards, it’s the next left. I look north and see the Snowys with snow still on them. To the south I see the Bulls. To the southwest, there are the Crazys. To the west, the Belts. Mountains all around.

I go down the lane. There are rocks everywhere. As I get closer to the place, stumps litter the pasture. I wonder, but go on. I hit a crest and there it is. A nice little place in the bottom. I get to the house – there is a note on the door. We are down pulling a calf at the shed below the house. I walk down there and meet these people. The people at the end of the road. This may not be the end of the road, but you can almost see it from here.

I end up seeing the new babies, calves and lambs. I pay close attention to the lambs. My dead ex-husband and I raised sheep and I have an amazing fondness for them. The lambs are sweet. There is nothing better than feeding ewes and lambs and then sitting with them. The gentle baahhss from the mamas. The crunch of eating feed. The little bahs of the lambs. They have four bums and there are no little bahs coming from them. They are giving huge BAHS to the world. It is nice. I love the smell of a corral full of animals, the sound, and the peacefulness.

We go to the house to review some paperwork. This is a good couple. They are in their 60’s and are relative newlyweds. They are wonderful to be around as there is great affection, love and respect between them. We talk of their life together and their grandchildren. They have 19 between them, but they are all both of theirs’. How wonderful. Too soon the visit is over and time to move on. I bid them farewell and move onto my drive home.

I return the way I came. The sun is harsher as it is now afternoon. It does not have the same magical quality the early day does. It is still a beautiful day, but not the same.

I get to the highway, and then I remember. I remember I forgot. I forgot the cancer, I forgot the depression, I forgot the trials to come, I just forgot everything bad.

There is something in the early morning sun that takes every problem away.

But now I remember - its four days to blast off.

Well, its seven days away. The day I start infusions (that’s what they call the chemo IV’s). That was what I had the mediport put in for. Still not used to it. Oh, well, after the 4th month and they can finally take it out, maybe it won’t bother me.

Some information of interest:

Tina had been asking about a dent. You know the tumor was actually way larger than originally thought – pathology had it measured at 4.5 cm. So, it was large enough it should have left a dent. Well, everyday when I got out of the shower, I would look. Since the incision was on the right breast, underneath, toward my arm, I would stand sideways and look. No dent. Isn’t that interesting? After several days of this I told Tina no dent.

Well, I got out of the shower one morning and paid attention to a straight on shot. There was the reason there was not dent. At last it is clear to me. While the nipple on the left was pointing at the mirror, the one on the right where the surgery was was looking at the floor. Oh, my, he under tucked. Made the breast smooth, but not even with the other. Well, I had read that when you had radiation, the breast that received radiation becomes “perkier” (not my word for it). Maybe he did it that way because after radiation it will perk up and look like the other. Who knows, but for now, from the side it looks good, from the front a little weird!

Onto another thing I want to mention. I haven’t really talked about the actual chemo and drugs used. I am amazed that they give you chemicals that are so strong they actually do things to your whole body while killing cancer cells. I want to explain a little about the process.

The port I had put in will be used to put in the chemicals. They have to flush it, and then they put in anti-nausea meds. I have also read it needs to be infused slowly to prevent headache.

So, I will be having the infusions every other week for 16 weeks. A total of eight infusions. The first Tina is driving, I am hoping that I can drive myself after, but we will see. Chemo was originally given once every three weeks. The regimen I am on is called “dose dense”, which means every two weeks. They have found those on dose dense schedules tend to do better. We will see.

For the first 4 infusions, I will have a cocktail made up of two different chemicals. The first being Doxorubicin, also know as Adriamycin. This is red and is generally given over 3 to 5 minutes. The sheet on this drug has an area called “Selected Side Effects”. Now I wonder which side effects they didn’t select. The ones listed are enough to drive you nuts – a decrease in blood cell count, a decrease in white blood cell count, nausea, mouth soreness, hair loss, diarrhea, darkening of your skin (maybe it will look like a tan), skin sensitivity, changes in heart function, sexual problems. Not much left out, but it still makes me curious about the non-selected side effects.

The second chemical is Cyciophosohamide, also called Cytoxin. This one will be put through my port and is given over 30 to 120 minutes. Now its selected side effects include all of the ones listed above, plus decreased appetite (now this may be a good thing for my Rubinesque body!), burning sensation of nose and sinuses during infusion. So, as you can see both have the capability of making my life YUCKY! But we will see.

Those on breastcancer.org have a variety of SE (side effects). Many have none of the symptoms, some have a few. It’s all different for everyone, so we will see.

Now this that I have described will look like this 4 X AC, dose dense.

On to the last 8 weeks. Every other week I will be infused with just one chemical. Pacitaxel, more commonly know as Taxol. These infusions will last longer, 1 to 3 hours, but Katie (the chemo nurse) said about 4 hours.

Now the side effect – oops I mean Selected Side Effects – include all of the above plus numbness, tingling, burning, or pain in your hands, arms, feet, or legs and facial flushing. Is this getting better or what? As this is also four infusions this will look like 4 X T.

So, my total treatment reads 4XAC, 4XT, dose dense. The redeeming factor here is that it is just 16 weeks. Were it not dose dense it would be 24 weeks. What a redeeming factor.

Enough for now. I need to get my mind around this treatment. Every time I think of it, I shudder. Seven days till blast off.

And the pizza and a buzz party is taking shape. Tina and I will be looking for the cheap tiaras when we are in Miles City. We both feel that everyone attending should have one to share the fun with us. (this will be April 6). I am shaving so I don’t have to deal with clumps. A small way to control the cancer.

And the auction, well it is building steam. We are now up to two calves, three cows dogs, and a horse, among many other items. I love small towns!!!

More later . . .

Today was a wonderful day, surprisingly cancer free. Well not entirely.

I made the reservations for the room for the "Pizza and a Buzz" party. I have one friend that does not understand why I would want to shave my head. I would much rather do that than wake up to hair clumps, or go to wash my hair and have the clumps clog the drain. And this chemo that I am going to be on does not have a hair loss optional clause. And its kind of a defiant move to prove the cancer WILL NOT control me. And my plans are to "Go Commando" after its done.

A good part of my day was spent grooming dogs. I find that they are more therapeutic for me now than when I started. Most of them love me in spite of the cancer. None have deserted me because of it. There is something very satisfying in making a matted mess look like a dog again.

Clenora, who I work with at the Vet's office where I rent space, has been working on an auction and dinner for me. She is a bulldog at getting people to donate things. I love to listen to her tell her victories and her determined attitude to get people to donate. I have been humbled by the amount of support for the auction. I really didn't realize I had touched so many lives.

This community has reminded me why I have always wanted to stay here. Sometimes it can really rally up. And like I said, I am humbled.

I have been working with The Healing Companion that the chemo nurse gave me. Depression is something they say can overtake you through this process. The book is really helpful. One of the exercises is having people who know you write down something they admire about you. That way when depression hits you can read through them and be reminded of how important you are to people, what you have done for them, what you mean to them.

I have so many friends that I only talk to on email anymore and they are scattered far and wide. I sent a request to have them put their opinions in an email and send to me. This too has humbled me. I think I am truly blessed. And amazed at some of the things people think about me. Things I would not have considered and have not looked at as anything that big. I am more blessed than I ever thought. Thank you all. These words will surely help me when I have those blue days.

Enough for tonite. Sweet dreams to all!

(Nine days to the first infusion)

You know I am finding this cancer is really all about me. And not necessarily in a good way. But it is mine and I have to do what I feel is right for me. I need to hate or be angry or rage or laugh or cry. Its mine. Whether I like it or not. My dogs are mine, but I don’t feel this way about them. My friends are mine. And I don’t feel these feelings about them. Its mine.

Everyone has a point of view on this. And they all have their feelings. But fortunately, none in my circle right now has my cancer. And even if they did have cancer, it would be their’s and it would be their decisions to make and their feelings.

Tina has reached a point that she just sits and listens. She has lost two to this disease, and she wants badly to influence me, help me with these decisions. But she has made a choice to just listen. I think she has seen how this eats at you, how you feel about things that influence this. She has seen me fight the doctors. She has seen me at my very worst. But she will just listen and listen to my rage, or my decisions, or my tears or my heart. I am very blessed to have such a friend. I have many and one special friend from a job I worked with the government that has taken this same stance. I am blessed for her as well. She said she wanted so badly to help me make the right decision, but knew she should not. I am blessed. Jeannie, thank you.

One of the ladies Tina knew that this disease took from her is named Val. She said the other day Val would have liked how I have treated this. I have forcefully made sure these decisions are mine. I was thankful for that comment.

Now an update. My rage has abated. Ever have a light bulb moment? Well, I had one last week. And it was brought on by a very nice lady on breastcancer.org. I was in the chat room and one of them asked what was wrong. Well, I told them about the rage, and the hating the decision I had made, and that I felt that it was wrong, and I did it for the wrong reasons. And that I was regretting this decision.

And then one of the women said, “I know what your problem is. It’s the same as mine. You need to control everything.” Wow, this girl is good! Then she says, “I am the same, I need to know I control all of my life. But this is not something I can control. I can’t do a thing about it. So, for this thing, this one thing, I am going to let the experts control this. I will give up control, but it will be one toenail at a time!”

And it was like light bulbs, a huge TA DAAAA, an epiphany times 20, a realization that she was right. How great is that? I pondered this for a while and was in total agreement. And by giving them control, I have retained control. Bless this woman. She put my whole life back in perspective.

That night, for the first night since this roller coaster started, I slept. I slept seven hours. Doesn’t sound like much, but after a month and half of three hours, it was like a vacation. And I have slept like that since. What an epiphany!

More thoughts tomorrow. I have caught up on this journey, and now you will get it as it happens, not as history. Thanks so much for listening. I appreciate the comments that have been made. If you are taking the time to read this horrid journey story, please let me know on the comments, and I would appreciate if you gave at least your first name. I can’t tell you how this feedback is good for me.

It’s Monday. Doctor was right when he said he made my weekend better. Very little swelling. And no fever. It did make it better.

Today, time to go to see Aliceann. My counselor. I haven’t been to see her since - - - well December? November? Too long ago. Especially with all the things happening in my life right now. I continually teeter on depression. And I could fall in the hole and stay there with this. But I am smart enough to realize this and I made the appointment.

I go into talk to her. She is ready. We have a good discussion. We discuss the fact that I have such a low opinion of myself that she understands why I would not make the decision to have treatment. And I am not sure it’s a low opinion of myself so much as an indifferent feeling I have about my life. We discuss why the treatment would be good. I know this but we review again. We discuss all that has been happening. We talk about the fact that a year ago, I would not have recognized where I was with this or why.

I tell her how I hate this. I don’t want to go through treatment to find I am a hateful horrid woman on the other end. She says she doesn’t think that will happen. I tell her how much hate I have – I can’t say it enough. I hate this disease, I hate my body for betraying me, I hate most of the doctors, I hate the treatment, I hate it, I hate it, I hate it, I hate . . . She says, that my reactions are common. I won’t say normal – normal is a setting on your clothes dryer. Are any of us normal?

Time is up. Must go. I tell her I will let her know what I decide.

Now off to see Katie. I was not going to go in the back door on this, but today I feel I want to. And I do have the tiara on. There is no one in the center. It’s quiet. Katie is happy to see me. She says, let’s look around. She shows me the infusion areas. We sit and talk. We talk about the drugs, the anti-nausea drugs, the infusions, the timing, and the need for a MUGA scan (a test that measures your heart strength. You want your heart pumping enough to move the chemo without damaging the heart). We talk about her surprise to see I had a port. She knew I was adverse to this course, and she was very surprised I had consented to that. I told her what doctor said.

She tells me that when a patient of doctor’s finally gets done with chemo, she, Shelly and Meredith have a party. Not that that’s a perk on this road, but I do finally tell her I want to schedule the first treatment. I don’t know why. Maybe it’s because I can still quit that decision. Maybe – well, I don’t know. We have scheduled for March 29. We then discuss blood tests, MUGA scans, anti-nausea meds, and what else I need to worry about.

The center itself is comfortable. There are easy chairs, televisions, and places for friends to sit with you. We talk about whether or not I can drive myself. After the first treatment I should know. She says she will talk to the onc about tests, etc. and will get back to me.

As I am getting ready to leave, she asks if I would like a book she has. It is called My Healing Companion. It was put together by a woman who has already been down this path. And Katie would like me to see how it is. After Pat, the first nurse-navigator, gave me books that were really helpful, I think I will look through this one. Anything to help, nothing can hurt. I tell her I will let her know what I think.

And Katie, like all the other nurses, says, you can quit anytime. She also says she has had people quit in the middle of chemo. As always, this reassures me that someone has listened. Someone wants me to know, it’s okay if I am hateful about this. If I am unsure, if I want to make my decision based on me.

I leave, I am hateful. Hateful I made this decision. Hateful again about this disease, what it’s done to my mind, what is it doing to my body, hateful that I have made this choice? Will I ever get rid of this hate?

I woke on Thursday. My underarm hurt like the dickens. I reach around and feel. There is a lump there the size of a grapefruit. And it hurts. And it’s hot.

I call the doctor. I speak with Shelly and tell her what is going on. She says she will talk with doctor. Meredith calls back and asks me to tell her what is going on. I explain about the lump and the fever. She calls back and says to come in tomorrow at 2. And bring something that will occupy you for a while if needed. Friday is surgery day and doctor may be later getting in the office than 2.

The rest of the day is miserable. The fever is making me ache in my joints and I have a headache. Finally, I decide to take some Tylenol. It reduces the fever and I sleep through the night.

When I wake on Friday, my fever is down. But the swelling feels larger. And it’s hot. I can’t put my arm down to my side. I am ready to go to the doctor. I am uncomfortable. And feeling testy. I have been resting the arm on Tinkerbelle to help ease the pressure.

I leave and go early to Miles City. It’s early, but I am unable to sit at home and wait. At least I can stop and get lunch. And there is a second hand store I love to wander in. And St. Vincent de Paul’s second hand store will be open.

I get to Miles and go window shopping in the second hand stores. Then I have a nice lunch at Hole in the Wall. Its quiet and I read the paper – something I rarely do. The news is soooo depressing.

I want to pick up a couple things at Walmart, but I have played around too long and must get to the doctor. I put on the crown, grab my Tinkerbelle pillow, and grab my game bag and suckers. I go in a check in, then hand out suckers all around. Again smiles. I really don’t think much about it, but I guess a 50year old woman in a tiara handing out suckers would probably make me smile, too.

I tell Meredith and Shelly I am here. Then I sit in the waiting area. I rest my arm on Tink, turn the TV on to something I can ignore, get out my puzzle book and wait. After an hour a girl I have never seen comes to get me. In I go with Tinkerbelle bag of games, Tinkerbelle pillow and the tiara.

We go into one of the rooms and she takes the vitals. Then she goes to give me a paper gown and I say, “Don’t bother. He’s seen it all before.” She smiles and thinks about it and says, “You’re right.” She leaves and I try to get comfortable with Tink.

Doctor comes in and asks to look. He says to get on the exam table and lay down. I am hanging on to Tink like she will really save me. I lay down and lift my arm. Doctor asks me when I grew this third breast. I laugh, but that tells me it is a problem.

He says he will draw the liquid out. He will deaden the area first. That he does, then he brings out the largest syringe I have seen in a human doctor’s office. It takes four times, but he drains the liquid out. On the last drain, he works the incision to make sure as much liquid as possible comes out. 155cc's - a lot. He tells me that this will make my weekend much more bearable.

After I have put my shirt back on, I sit at the desk with him and talk. It is the end of the week and he has nothing pressing now. And we talk about treatment. We talk about the odds that I am cured right now – 70 percent. We talk about the fact that those around me are wanting to pressure me to take the treatment. We talk about time investment, and money lost, and all those things I want the other doctors to get. And he gets it. Why do they miss it?

I get ready to leave. Doctor asks if I want to know what he thinks. I say sure. He tells me he wants me to take the treatment, and he wants me to do it for him, not for me. He wants me to take it so he can be my doctor in the future. He wants to be my doctor in ten, twenty years. And he smiles. I smile and tell him okay. I hand out suckers all around. And I leave. I still don’t know what I will do, what decision I will make. But I still have time. I really hate this decision. I hate again what this cancer is doing to my life.

I was feeling pretty good and thought I would go back to work at one of my stable incomes. I clean and supervise a cleaning crew at the power plant. I would go back to work on Monday. The work is in the evening and I thought it would work fine with making an appointment with the onc.

So, I went to work Monday. A little sore, no big deal. The appointment was scheduled for Tuesday. I didn’t want to miss anything in the appointment, so I had my next door neighbor come to listen with me. She was more than happy to help. The appointment is in Miles City and she will just be getting out of classes (she is taking nursing classes) when it is scheduled. The timing will be good.

I meet Lisa in the parking lot. I tell her that I am not modest and if she wants to stay in the room if they want to check incisions, she is more than welcome. I adjust my crown and fill my pockets with suckers. Since I started this tradition, I would keep it up. We go into the waiting room.

I check in at the desk and she says have a seat. There were about 15 people waiting, and I got up and started handing out suckers. There is some joy to find there when you give an older cowboy a sucker and he smiles like you have given him something he has been waiting for for years. There were several older ladies that had the same reaction. I have placed some smiles for my torrid journey. This makes that journey a little more bearable.

Here comes the nurse. She is funny and happy. A great deal of optimism in this girl. We get the prelims out of the way. Oxygen level, blood pressure (in the arm opposite the surgery), temperature. That stuff. She did such a good job – a sucker for her! Another smile. And she tells us the doctor will be in in a minute.

We wait and chat. And just as I was going to reveal some deep dark secret, in he comes. He is a very serious man. I handed him a sucker right away, that way if this sucks, he still gets his.

And then he starts to talk. He talks about this being a systemic disease, he talks about the chance for 100 percent cure; he talks about 16 weeks of chemo, 6 weeks of radiation, and follow-up hormone therapy. At one point Lisa told me that I was breathing too hard. And I took a bigger breath and started to breathe a little like normal.

Lisa has been taking notes. And she asks several questions, good questions. And she rephrases them a couple of times. Making sure she understands the answers. I look at the doctor and say, “I am not doing this cure to end up on the street.” He looks at me like I am crazy. The cure will take too much time. It will cut my earning time in half through chemo and a lot more during radiation (which has to be done in Billings – which means living in Billings 5 days a week). I am not going to end up without my life. I would rather die at home than live in a ditch somewhere. This is not something most people understand. The cure is everything. But it is not to me. Then, we won’t mention the 6 months of feeling like sh$t.

And I explain to the doctor that all the people – friends and relatives - around me who have had cancer and had treatment are okay for a couple of years. And then – WHAM – the cancer comes back like a vengeance and they die. Just die. With only two more years to show for all the pain, suffering, feeling crappy and going through the torture that is called the cure. He tells me that statistics do not support that theory.

I tell the doctor that I will let him know next week. I am defiant and unsure and mad and angry, and hating my body, and hating this disease, and hating the doctors. And I won’t do breast self exams any more and even if I find something, no one will ever know. It will be my little secret to die with.

Then Lisa goes over the information again with me. Not that it will change my mind or thoughts. But she is hopeful, I think, that she can give me something positive about the treatment.

The doctor then asks if we would like to see the infusion center and meet the infusion nurse - Katie. I say okay. We go to the back of the building and there is an area that has a hospital type desk area, with four areas sectioned off for infusions. They are all full. And Katie is very busy. She asks us to sit down and then comes back and asks if I would like the information on the chemo meds to review. I say okay and she goes to copy them. The room is very busy. And there are TVs on and people all around. Katie asks if I was going to do treatment, was I going to do it through IVs or did I know. I showed her the port. She looked at me funny, but didn’t say anything. Katie says she would show me around a little better but because it is so busy, she would like to do it another time. I understand. I say okay and we leave.

As we go, we go through the area where my doctor is located. He has two wonderful nurses – Meredith and Shelly. They have been absolute lifesavers in my meltdowns over this whole affair. Meredith asks if I am okay with everything – that’s all it took. I am crying yet again. We go into another room and she shuts the door so I can cry on her shoulder. I go through the whole appointment and tell her I just don’t know how I am going to do it. I am not going to lose my house and my life just to get treatment. Meredith says what every nurse (not the doctors – well, except mine) has said. It is your choice, you don’t have to do this if you don’t want to. I cry some more. Then we leave the room and are standing by their main desk talking. My underarm is sore and swollen. And I ask Meredith if she would feel it and tell me if she thinks there is a concern. She doesn’t think so. My doctor’s associate is there and Meredith asks her to look.

As modesty has gone out the window with this disease, I was ready to whip off my shirt right then. But she pulled me into a room and looked at my underarm. She says its looks okay and the swelling should go down. Be patient.

I am calm now, calm enough to leave. Lisa had left when I started crying on Meredith’s shoulder. And now I can drive home. So much to consider. Too much.

When I get home, I call and schedule an appointment with my counselor, Aliceann. I think I need some balance and she will help with that. I can get in next Monday. I tell Pearl, please if you have any cancellations, please get me in.

And I go to work that night. The work has rubbed my underarm raw and I leave early. It is very uncomfortable. And when I go to sleep it bothers me.

I wake up and it hurts like the devil. I call and tell my boss that I won’t be in for the next couple of nights as I want to rest that underarm. See if I can get the swelling under control.

The phone rings. Its Katie. She is calling because she felt bad about yesterday. She asks if I am coming to Miles City soon. I say Monday. She asks if I will stop in, she would like to give me a better idea of what is going on. I say I will be there.

Now I am back to waiting. The pathology report needs to come back so a plan of attack can be put together. I don’t like any attack at all, but the most complete knowledge of what I am up against is needed. And there were only some of the necessary tests done in surgery. The rest needed to be completed in the lab.

Wait, wait, wait, wait. I spend the next few days trying to distract my mind from this. There is too much waiting for results, tests, and procedures. Too much time to think about it.

Thursday morning the phone rings. It is Attila’s office. The nurse says, “You have to make an appointment for follow-up.” I asked her why? It’s funny, but through this whole ordeal, no one knows how to answer if you don’t do what they want. And any one of you that knows me well knows that if it’s a standard practice or accepted reactions, I am probably going to break that mold. So, you could hear the quiet as she thought of an answer. After about a minute she says, “Because you had surgery.” I said I know, but I had met with my doctor for swelling and he had examined the incisions and said they were healing well. He said he would note it in the file and would make an appointment to meet with the oncologist when the pathology was in.

Another quick side note. The hospital where I had surgery and the biopsy done are in Billings. 100 miles from here to the west. And my doctor is in Miles City, 45 miles in the other direction. They are both a part of the same health care system. They have all the files computerized and have access to all the information except films on the computer. In fact, that is one of the big advertising pushes they have. Your file is easily accessible to all.

Now, I don’t know if she didn’t look in the file for this note, but after a minute she says, you are closer to Miles City, aren’t you? I said yes. She said your doctor said you were healing well. I said yes. She said that she would note that my doctor would now take care of it. I really don’t think she even looked in the file. And for what it’s worth, it is less expense for me to go to Miles City. She realized that and said it would cheaper for me to go to Miles City. (light bulb moment)

Oh, and by the way, she said. Your tests were clean. Happy Dance! What a wonderful thing. YEA!

I didn’t think anything of it. I went about my business. I knew that my doctor’s office would call when it was time to schedule.

The next morning my doctor’s office called. Now, my doctor is not in the office on Fridays. I think this is because he is doing surgical procedures. But his associate called. She said they got the pathology and she wanted to talk to me about it. I wasn’t worried because of the call the day before. But what she told me was 180 degrees away from what I had heard yesterday.

There were tumor cells loose in my body. The tumor was extremely large. That is all I heard. My mind went blank. She said she was going to call the surgeon and oncologist and see what else she could find out. I hung up. Why would this test be so much different from what the surgeon’s office said? What was going on? Panic, terror, panic, terror, panic, terror. It’s all going on again.

I spend a good portion of that day in mental limbo. When the doctor’s office finally calls back, she says all of the information was not in the file and there was no note that further tests were being done. She had contacted the surgeon’s office and it was clarified for her and the tests were clean like originally thought. I am doing the happy dance again. But, I am disappointed that the information did not all get in the file. There needs to be a safeguard against this. How many people have this happen?

Now, I can have a peaceful weekend. I can relax. I can be calm. Enough.