Hair

I thought I was prepared. The thing most talked about since I found out I had cancer was the thing that happened today. I lost my hair. All of it. It had been coming out more and more and I had a few bald spots here and there, but today was almost like a horror movie for me. My scalp and my hair were hurting worse than normal. Yes! My hair actually hurt! Several days ago Tom and I actually had this conversation:

Me: This is driving me crazy! I can feel my hair (hair in my hands and I'm pulling on it lightly)

Tom: I can see you feeling your hair.

Me: NO! I mean my hair can feel!

Tom: (looking at me like I'm insane) Right...you are feeling your hair.

Me: My. Hair. Has. Feeling.

Tom: I have no idea what you are trying to say.

Me: Forget it.

Tom: I'll try. Believe me. I'll try.

Me: My hair hurts.

Tom: (Deeeeep long sighhhhhh)

Today I got in the shower and when I pulled my hands out from lathering my hair, it looked like most of my hair was attached to my hands. It didn't seem real. I kept rinsing my hands and putting them back in my hair and bringing them back out only to see more and more hair coming out. I rinsed my hair then reached up to lightly touch my head. It felt like all my hair was still there. Ok, maybe that was it, I thought. Maybe that's all that is going to come out today. I thought I'd test to see how fragile my hair situation was and pulled together small bunch of hair - about 20 or 30 strands. I gently tugged on the little ponytail of hair and the whole dang thing came free from my scalp.

I started crying. This was it. This was the next step in the process. I couldn't believe how easily my hair was falling out. The slightest touch would detach the hair from my head. I stayed in the shower as long as I could - crying and mourning the loss of my hair. I've always loved my hair. There was not a hairstyle I couldn't do with my hair. Even at it's longest I could curl it and it would hold curl. It was thick and dark and easy to take care of. I'm told when you finish chemo your hair will come back in differently than what you've had before. They say if you had straight hair, your new hair will come back in curly and perhaps a different color. I don't don't want curly or a different color. I want what I had.

Another reason I wasn't ready to lose my hair was simply because it will now become harder to hide the fact that I am a cancer patient when I go out in public. Unless I'm looking especially good that day, I don't want people staring at me. Plus, every time I look in the mirror I'll see a sick woman looking back.

Anyway...I got out of the shower and left behind a mound of hair. I got dressed then slowly started brushing my hair. I could see big bald spots forming and my hair was looking extremely thin in some places. I went downstairs in tears and told Tom I needed to get my head shaved. Thankfully I didn't cry the entire time I was getting my hair buzzed off. It was traumatic and terrible.

I wasn't sure how the kids would react, so I thought I'd make it as easy on them as possible. I had on a wig when they walked in the door. Jacob didn't pay much mind to it, but Allison was curious as to why I was wearing the wig. I bent my head down and told her to pull the wig off. She very carefully grabbed the wig and pulled it off. The look of sadness in her eyes almost got me crying again. I sat there a long time waiting for Jacob to notice. Finally I had to tell him to look at me. I believe his exact remark was "Oh wow, does this mean you started chemo today?" I laughed. I love that his 7 year old mind still isn't able to process exactly what is going on with me.

I'll now continue on my journey wearing wigs, scarves and silly hats. God has my hand.

The (Rear) End

Part 4

You know what the problem with cancer is? The problem for me anyway... I never felt sick. One day I think I'm fine - I have no pain, fatigue, blurry vision, loss of appetite, ingrown toenails - nothing! Then some doctor comes along and says the word cancer - your whole life changes forever. Because of two cancerous tumors in my left breast, I will live the rest of my life being called a breast cancer survivor. No finer group of women are there in the world than the breast cancer survivors I've met. But I don't want to join your group. Everyday I want to figure out how to mail back my membership card and say "forget this mess!"

I'm not whining, really, I'm angry. Though I smile knowing all the women whose lives I've touched just by telling my story so far. There are women out there getting mammograms because of me. How cool is that? The problem is, I'm just getting them to the doctor - if they have cancer the nightmare begins for them. All I can do is send people to the doctor to find out if they already have this horrid disease or not. I'd much rather someone call me up to tell me they read my story and got their "breast cancer prevention shield".

I hate this disease. I do. I hate it. I hate that every woman on the planet has to worry about this. No one is safe. You can't have this disease 'just a little bit'. Cancer has 4 stages. My cancer is only a stage 2 and I've lost both my breasts and I've got to go through chemotherapy. Imagine what it must be like for the stage 3 and 4 women. My point: go get a mammogram.

Anyway! When last we left off, it was Friday night at the emergency room. My ER doctor (Sue as she wanted to be called) tells me she's going to check everything possible to figure out what is causing my fever. As I've been in the ER, my temp has steadily climbed. I was shivering, I was so cold, but my nurse Jason wouldn't let me have any blankets, because he said my shivering was from my high fever. I was miserable, but hopeful of going home that night. Each test they ran kept coming back negative. Finally Sue came in and announced they were going to admit me to the hospital. Crap!

They couldn't figure out what was causing the fever, which continued to climb and my blood pressure continued to drop. I'm going by memory here, but I believe when they were wheeling me upstairs to my room my temp was 102.5 and blood pressure was something like 85/50.

When they got me to the patient rooms, they realized there just wasn't any room for me. I got stuck in the hallway for what seemed forever before they finally found a room for me. My new room was lovely, but they told me not to get too comfortable - I was supposed to be in an isolation room - there just were none available at that moment. They said they were getting one ready and would move me as soon as they possibly could. Meanwhile I continued to feel worse. They were able to slowly get my blood pressure to go back up, but it was taking awhile. Due to my low blood pressure they were unable to give me anything for pain. They were also struggling to get my fever down. It would go down for a moment, but then pop right back up again.

It was after midnight and Tom and the kids were still with me in my little temporary room. Tom wanted to stay until I got settled in my new room, but I finally talked him into taking the kids home. I said I would call in the morning to let him know my new room number. Right after they left 3 nurses came in and said an isolation room was ready, but they were going to move me to the ICU first. I stayed in the ICU all that night and until mid morning when my fever finally started dropping and staying down. My blood pressure had gone back up to it's normal 115/80, so I got to finally move into my isolation room. It was an exhausting night.

I really thought they were going to release me that day. They were sending up a doctor who specialized in butt problems to confirm my fissure diagnoses. My fever was gone and blood pressure was steady. If it weren't for the wicked pain in my rear, I would have felt great. And then the diarrhea hit. With each bout of diarrhea it felt like fire was ripping through me. I was begging for pain meds, but the butt doctor said no. He gave me a bottle of numbing ointment and told me he could numb me up or I could do it myself. I painfully did it myself. It took about 5 minutes and I felt amazingly better! Which meant time for him to give me a thoroughly good exam. But! by doing so he found my nasty fissure.

I asked him what I should do about it, because there wasn't much I could do to control my diarrhea. I explained about the chemo destroying my digestive system. Surgery, he said, I needed surgery to have it repaired. This just keeps getting better. He did know of a cream though that would help until I could get the needed surgery, but it would take a day or two to get it mixed up special for me. The cream ended up working famously! Dr Young said I could have the surgery, but I would have to pause chemo while I did that. No thanks! I want to get chemo finished!

Ok, so butt problem taken care of, all I needed was to get out of the hospital. I had already spent one night there and was ready to go. They had told me that they thought the fever was brought on only because of my white blood cell count dropping so low. It didn't appear I had any infection anywhere. When the doctor came to visit me Saturday, I expected him to tell me I was going home. Nope. He wanted to keep me another day. Sunday though, he kept his word and released me around 4pm that afternoon.

I was never so grateful to be home.

Chills!

Part 3

Friday

March 20, 2009

I was home from the hospital, but unable to get out of bed. I was either extremely hot or cold and unable to stay awake for longer than half an hour at a time. The pain in my rear wasn't getting any better either. Tom was home, thankfully, so whenever I needed anything I would call his cell phone and he would run upstairs with my ginger ale or medication. He kept trying to get me to eat something, but I absolutely couldn't. I figured it was just the pain that was making me feel so sick.

After the third time or so of shaking chills, I decide to take my temperature. When you are receiving chemo they tell you time and again to check for a fever. Chemo meds kill your white blood cells which fight off infection. Without those white blood cells your body has a tough time increasing your body temperature - so when you do get a fever it means something bad could be going on. I believe my doctor told me that a regular person's 100.5 temp is equal to 103 in a cancer patient. With that being said, I was instructed to call the doctor's office anytime my temp hit 100.5 and stayed there for an hour OR call instantly should it get as high as 101.

I took my temperature and it was 100.5. I went downstairs and show Tom the thermometer. He stares speechless at it then goes shuffling around in a cabinet until he finds another thermometer and has me take my temp again. The second reading came back as 100.9. Tom put that thermometer back and decides he liked the first one better. Since I have to wait an hour before taking my temp again, I decide to go back to bed. When I woke up my temperature was 101.2. Time to call the doctor.

I talked to my doctor's partner who gave me an option of going to the emergency room or she could just call in a prescription for an antibiotic. Remember now, I'm nervous girl...I'm scared of making the wrong decision and it affecting the outcome of my life. My LIFE is what I'm dealing with here. I tell the doctor I want to go to the hospital and play it safe - plus, I really did feel awful. And my butt hurt. Unfortunately, Tom disagreed with my decision immensely. I was too tired to fight about it, and just had the doctor call in the prescription while I went back to sleep.

Tom left to go pick up the antibiotic. While he was gone the doctor found my chart and called back. Seems when I left the hospital the day before, they did blood work on me and my white blood cell count was extremely low. Since my white blood cell count was so low and my temp was continuing to rise, she told me I had to go to the ER.

Frustration was written all over Tom's face. I had just been released from the hospital the day before and now here I was about to get admitted again less than 24 hours later. He was tired and this time we didn't have family in town to help out with our children. I let him choose which St Luke's we should go to. He likes the one in Overland Park which is much smaller and much closer to our house, so that is where we went. This time, though, their emergency room was busy and I was sure I was going to have to wait forever to be seen. They checked me in pretty quickly; put a mask over my face; sent me to the waiting room and made me wait almost 5 minutes. I got called back ahead of everyone else in the joint.

Once back in my little patient room I met Jason - another amazingly great nurse at St Luke's Hospital. He was funny, nice, understanding and knew how to use a chemo port. I told Jason about the last time I was in that ER and how my nurse didn't know how to use my port. I said she ended up being made fun of by another nurse. Shortly after telling him this story, the nurse from that night came in my room! She said she saw my name and came running in to tell me hello and share her good news. Last time I was there I had told her about the miracle of my cancer being caught so early. I could tell it kind of freaked her out, because she's the same age as me. She said she had to come in my room when she saw I was back to let me know she went right out and got a mammogram. It came back clear. Praise God!

God has given me a most horrible disease, but by doing so He's led me to meet some of the most wonderful people. Another example would be the doctor who treated me in the ER that night. Her name was Sue (I'm really trying to remember names now.) Sue and I bonded instantly over our displeasure of having to live in a city without a Jack in the Box restaurant. Of course, after that talk, Sue decided she wanted to see what was causing so much pain in my bottom. I'll just say that was an unpleasant exam and leave it at that. It was too painful for me for her to do a full exam, but her best guess was a fissure. And... they were going to have to admit me to the hospital... Sigh.

Part 4 tomorrow...

Well.... Poop!

My butt, pt 2 (giggling)
Monday
March 16, 2009 4:30pm

Off I went to the hospital to get the nausea and vomiting and diarrhea taken care of. Living with that kind of sickness was out of the question. I couldn't do it. I wouldn't do it, I mean. I could, I suppose - once there was a time people didn't have a choice. Dr Young assured me I didn't have to be sick. Funny the whole ride to the hospital I wondered how much of that sickness was my own fault for choosing the more aggressive treatment. There were many reasons Tom was displeased about having me admitted into the hospital, and I decided it was my own best interest not to ask what they were specifically.

Even though we were heading into downtown and away from the heaviest traffic, we were still driving into the big city at rush hour. I was so afraid I wasn't going to be able to make it to the hospital without having to stop somewhere along the way. Somehow, someway, we made it to the hospital in one piece. What we didn't know, though, was where we were supposed to check in. We knew "cancer center" "patient short stay" "5th floor". This hospital is huge! It's three massive buildings attached together with sky walks. We've no clue. When you don't know where to go... you guess. First building, 5th floor? Wrong. Ok, so we'll try another building and its 5th floor. And we were going to do just that...as soon as we found the sky walks. We had literally walked in circles by the time we found the sky walks.

Looking down those sky walks was like looking into a great abyss. I couldn't make it. I really couldn't! Tom found a hallway waiting area and told me to have a seat while he ran off and grabbed a wheelchair. My legs were like rubber bands; my head was foggy and I thought I could pass out soon; I had nausea; my diarrhea had returned - but I looked down at those waiting room chairs and decided, maybe I'm not feeling that bad after all - I'd stand. Tom was relatively quick with the chair and we had no problem finding the cancer center after that.

They were expecting me. Zipped me right into one of the ugliest hospital rooms in the world. Two nurses were working on me at once. One was asking questions while the other was getting ready to shove some giant needles into my port-o-cath. I tell them I need to go to the bathroom so could they please hurry this along? They were very understanding - in fact one nurse was so darn sweet she came into the bathroom with me to place some toilet inserts in my potty. Two of them. I was honestly confused. I had to do one of those "pssstt.. um, uh, yeah, your insert is blocking where my poop is supposed to land."

"No, Sheri. THAT is where your poop is supposed to land"

"Nuh uh." I think was my clever response.

Nurse leaves and I'm left on my own. I knew what they wanted and why, but I was not going to do it. I calmly walk over to the toilet, reached down and removed their nifty little inserts, did my business, replaced the inserts, washed my hands, and crawled back into my hospital bed.

After I was back in bed one nurse acted like it was Christmas morning and went galloping into the restroom to see what magical things had been left for her. I almost felt bad for ruining her Poopfest. "You couldn't go?" She asked me.

"No, I did." I told her " I just couldn't go in your bucket. I'm not going to poop in your bucket." Nurse tried to cut me off so she could explain why this was so important and I cut her off. "Listen" I explained "that is a shallow plastic bucket thing and what I have can only be described as explosive." I left her speechless.

It was decided that now wasn't the best time to force this issue on me. One nurse was still trying to get all tubes, hoses, needles, monitors and whatnot attached when there was a knock on the door. My nurse told them to go away, because she was busy. A little voice called out that it was Dr Young. My nurse actually told her to go away and come back later when I wasn't so busy. And she did. I was most impressed that Dr Young showed up so quickly after I arrived at the hospital. She has completely won my approval again.

When Dr Young returned we talked for a long time about all the different medications that were out there and how she will do whatever I need her to do to make this as pain-free as possible. I told her I was exhausted and needed the vomiting and nausea to stop so I could sleep. With that said, Dr Young called in the nurse who pumped my IV line full of three different medications. I don't remember much else until later that night when they brought in my dinner.

My dinner tray consisted of roast hen, stuffing, broccoli, salad, and pie. I looked up at the nurse...seriously? Were they trying to kill me? She said she ordered me the wrong type of meal. Duh. The nurse let Tom have that tray of food while I got to enjoy my lukewarm broth and jello. Tom announced it was the best hospital food he'd ever eaten. That actually made me happy. Anyone who knows Tom, knows he loves food, so I knew he wasn't completely miserable.

As the night wore on, I got sicker. I felt horrible guilt about leaving Abby and Lola to babysit my children. I called her and apologized, but she assured me the children were all getting along famously and was happy to be there to help out. What else could she say, really? Admit that this did suck for her and tell me to get my butt home? I told Tom to go on home. He said no, he wanted to stay and make sure I was ok. They brought in a cot for him, but he ended up sleeping in a chair while I was up sick most of the night.

My stomach was cramping so much that the pain was almost unbearable at times. They kept offering me pain meds, but I told them to stop worrying so much about my pain and deal with what brought me there - the diarrhea and nausea. Besides, I told them, if they gave me anything for pain, it was only going to make me that much more nauseous. Nurse change happened and I met my favorite nurse at that hospital. Kim.

Kim walked into my room that night and announced that I was in extreme pain. She looked at my chart and told me Dr Young had approved pain meds whenever I needed them. I knew that, I told her, but... Kim didn't let me finish. She left only to return with a shot of morphine, which I got before I could protest. I had suffered all day needlessly. That shot did multiple things: eased my pain, stopped the diarrhea and calmed my nausea. Thank you, God. And thank you, Kim for being a nurse for 18 years and knowing more than me about what I needed.

Each day in the hospital was spent tweaking different anti-nausea medicines so we could find the perfect combination to use after my next chemotherapy treatment. It wasn't an easy process and anytime it got too rough for me, I went back to my old friend Mr. Morphine. On Thursday, Dr. Young did tell me she was pretty pleased with the drug cocktail we'd finally put together for the nausea, but sadly, there was nothing she could do for the diarrhea. It appeared the chemo had totally destroyed my digestive system. It happens, she said, and sometimes it does correct its self after you finish chemo. Lovely. Simply lovely.

On Thursday, I was so happy to be going home from the hospital I failed to mention to Dr Young that I had suddenly developed a wicked pain in my butt with my diarrhea. I just wanted to go home. I just wanted to be with my children. That pain would go away, I was sure. Once home, though, things only got worse. I was away from my precious morphine shots and all it took was that first trip to the restroom for things to come crashing down again. It was like someone had taken a butcher's knife and sliced it into my rear end then sadistically started pouring jalapeno juice into the wound. The pain hit me so hard it caused me to throw up.

I was able to get off the toilet, barely, and fill my bathtub up with hot water. The pain was insane. I would only get out of the tub long enough to go to the restroom before practically leaping back in to soak. No clue how long I was in there, but finally Tom came in to check on me. I told him what was going on and he left to go get me hemorrhoid cream. Finally relief was on the way. If there is anyone out there who has ever had a fissure, you know how bad things are about to get, right? Don't put hemorrhoid cream into an open wound. You've just added lemon juice and salt to your jalapeno juice.

Screams could be heard around the world!

Part 3 tomorrow

What Were We Talking About Last?

Where were we?

Let's see:

Friday: Chemo

Saturday: Head in toilet; sister-in-law in town with my nieces and her mother. Hi, Abby, Ashley, Christa, and Lola!

Sunday: Head in toilet; guests still here, but they're spending their vacation by cleaning my house. Thank you. Thank you. Thank you. Thank you.

Monday: Head deeper in toilet; admitted to hospital; guests at my house babysitting my kids.

Tuesday: Still in hospital; guests still babysitting.

Wednesday: Still in hospital; guests heading home. Bye, Abby, Ashley, Christa, and Lola! I love you! When you get home, don't forget to tell my brother hello and that I love him.

Thursday: Home from hospital, but have sore throat. Suddenly have developed a wicked pain in my butt (more on this later).

Friday: In bed all day sleeping, sick or in pain. Started running a fever so had to call oncologist. Back in hospital.

Saturday: In hospital

Sunday: HOME!

I'm home. You can't know how happy I am to be home. This level of happiness is matched only by the amount of pain I'm feeling in my bottom right now. This past week's hospital stays and pains and sickness will be reported, but first I give you the story of my butt and the things that have happened to it since I last posted.

(This is for you, Jeneil)...

It's Monday and I have eaten something I shouldn't have eaten (food) and I'm running to the bathroom about every 15 or so minutes. Tom was at work and Abby had taken the 4 kids out for ice cream and toys. It was just Lola and me in the house. The bathroom on my first floor where Lola and I were watching TV is near the living room, so I was opting to run upstairs every time I needed to go. If I just had diarrhea I would have used the downstairs bath, but since I was never sure if I was going to vomit - up I would go to my master bathroom. (I can't handle listening to anyone throw up, therefore I wasn't going to subject Lola to that either.)

Each jog upstairs had me feeling weaker and wobblier, so I was trying to make each trip count by staying as long as I could. Spike, my dog, followed me each trip. It is Spike's job in this house to keep people from breaking in and killing me. He is 7 pounds of pure Maltese terror. Spike was tired, too, from the up and down bathroom trips so while I was going to the restroom, he would nap. Spike hates the tile floors in the bathrooms, but still refuses to let me out of his sight. This day he found a work around for his tile issue.

One of my last trips up, I'm there sitting on the potty for an extended amount of time. By the time I go to stand it almost cost me my life. I was so weak and so exhausted, I hadn't realized that Spike had made his bed in my pajama bottoms between my feet. When I stood up I lost my balance. I almost fell face first onto the hard tile floor. I'm not sure how I kept myself from falling, I just remember hopping around and accidentally kicking the dog halfway across the bathroom. A child shouldn't have to tell people their mom died because she didn't notice the family dog nested in her pants while she sat on the toilet for half an hour.

It was after that trip to the restroom, I called my oncologist - begging for help. They said the best way they could help me was to go to the hospital - they'd have a room waiting for me. By Thursday what they finally managed to do was stop the vomiting, but not the diarrhea, which by the way, had caused my colon to finally surrender. A tiny little thing called a fissure had formed. That fissure is the thing that nightmares are made of.

Part 2 tomorrow.

(Yes, there was going to be so much more to this, but I am unable to think clearly enough to write. The fissure pain is truly severe and the pain meds I'm taking for it are powerful. I've great stories to tell, I'm just unable to get them written tonight. But I will! I promise!)