My Cancer Journey

The Day After the Day After

2005-08-04T22:10:00.000-07:00

Last night was a little better, but not much. I had the T.V. on all night. At least the room wasn't dark. I was still having nightmares but not as bad as the night before.

At 4:30 A.M. the doctors come in. What day is it? Where are you? Who is the president? (That's a new one.)

I get to have a nice breakfast. There's just one problem. My jaw on the left side killing me! I can hardly open it let alone chew anything. The drill went in on that side about an inch above my jaw.

The aide comes in and I get to get up and try to clean up a bit and get a new gown. I feel a little better but I still need a shower. Then I get to sit up in a chair for awhile. The therapists start coming in. First the physical therapist. She puts a belt on me and we go for a little walk. Then the speech therapist. He gives me a test to see where I'm at. He shows me pictures and I have to tell him what they are. I felt like I was on Jeopardy. If I came up with an answer that was close but not quite right he was quiet. The guy was anal anyway. One of them I said was a boat and the right answer was canoe. That was splitting hairs. The occupational therapist came in. We talked a little bit and I just didn't see that I would need any her services. My sister and the speech therapist agree that I could benefit from some ongoing speech therapy.

The doctors pronounce me fit to be released from intensive care to a regular bed as soon as a bed becomes available. Tomorrow I will have surgery to implant a port-a-cath in my upper chest. This is a device to receive the chemotherapy without having to poke me in the arm every time.

So now we wait for a regular room.

Wait...Wait...Wait

The Morning After

2005-08-03T23:51:00.000-07:00

I wish I could say that I slept well last night. First, I have to have an MRI in the middle of the night. "Hold your breath; Hold still; Are you in pain?" Then back in my bed and back in my room I try to sleep. It was the longest night of my life. Every time I fell asleep, I would have a nightmare. I would wake up about every 15 minutes all night long. I tried to figure out the meaning of my dreams and why they were so scary. I guess it was just because I was alone and scared in them and alone and scared in my hospital room.

Finally, the doctors start making their rounds. The hustle and bustle on the floor picks up and the nightmares stop, even though I drift in and out of sleep. "What day is it?" August 3rd. "Where are you?" The hospital.

My favorite nurse, Kim W. is on duty. She asks me if I feel like eating something. "I'm starving," I said. She seems a little skeptical but orders some semi-liquid breakfast. I get some kind of real thin Malto-Meal in a cup. Everything is going good until she gives me a big pill to swallow. I wouldn't be able to swallow that on a good day. I take it and within seconds, "I'm getting sick!" She gets the pan in time for me hurl. So much for that. All I want now is ice chips.

Next thing I know, I have speech therapists, physical therapists and occupational therapists coming in with me curled up in the bed ready to hurl up my ice chips. My sister, being an occupational therapist, told them to get out, there wouldn't be any therapy going on today.

Doctor Smith returns and since my family is all present, gives them the news. He takes them out to the nurses station where he can show them the slides of the MRI. To make a long story short, they were able to get most of it out. There was a small portion that was in a fissure that wasn't able to come out because he was afraid of doing more damage than good. The tumor was basically encapsulated and it didn't have any fingers or roots spreading out. Hopefully, with the Gamma Knife radiation, they will be able to kill what is left of the tumor.

Dr. Brachman had scheduled me for a PET/CT scan for that afternoon. This was about noon. They come to get me in kind of a wheel chair and take me to radiology where they "park" me between two curtains. Hunched over in my chair, I watch the girl in the office return with her lunch. She must be filling in over the lunch hour because when the phone rings, either she doesn't answer or she doesn't know anything and has to take a message. I sat there for what seemed like an eternity. I wanted to yell at the girl but didn't know if I could yell loud enough or even put together a coherent sentence. Finally, a tech comes out and tells me that the doctor didn't fill out the paperwork correctly because he doesn't know if he wants a PET scan or a CT scan. So now I have to wait for someone to come and get me to take me back to my room. Wait, wait, wait........

Overall, it was a lousy day.

Surgery Day

2005-08-02T23:30:00.000-07:00

Good Morning!!! "Can you tell me what day it is? Where are you? What's your name? Why are you here?"
"Tuesday, August 2. Ummmm, the hospital. Rebecca. I've got a umm ttttumor in my head."

My fan club shows up: Larry, Jan, John and Jeff. I think my niece (Larry's niece) Suzie was there also. It might have been yesterday. I mention this because she is a nurse and spent most of her career in the Maricopa County Hospital emergency room. If you know anything about county hospitals, they are very, very busy: Gunshot and stabbing victims, drug overdoses etc. She had intelligent questions to ask the doctors and we appreciated her input.

All morning is taken up with small talk. Everyone seems a little nervous except for me. Once again, looking back on this, I was like a lamb being led to slaughter. It didn't occur to me that I could die on the table, or be permanently brain damaged. But even at that, I would have made the decision to have the surgery. Anything would have been better than the way I was.

I don't remember them coming to get me to take me to surgery. I was asleep for the surgery. Many people have asked about that because for certain types of brain surgery you have to be awake. My head was held in place with a "halo". They didn't even shave my head! The surgery took about eight hours. The first thing I remember was being wheeled back to my room and the nurse or doctor was telling me to wake up. We stopped by the waiting room and my family was there. I sensed that I had been through a big thunderstorm with lots of lightning similar to a Frankenstein movie. Come to find out there was a huge storm that night so I must have been aware at some point. My family was happy and said that everything was okay. It was late and they went home.

I would like to say that I went to my room and slept peacefully for the rest night; but, you have to remember this is a hospital and you don't get a lot of sleep there. They were soon wheeling me off to get a CT scan-hitting every bump along the way. Can you believe there was a waiting line when I got there?

When I get back to my room, the nurse asks me if I am in pain. "YES!" "How bad on a scale of 1 to 10?" "10." I get a shot of morphine. Now maybe I can get some sleep.

Next Stop-BNI

2005-08-01T17:05:00.000-07:00

I woke up bright and early on Monday morning in Barrow's Neurological Institute (BNI) intensive care unit. When I say bright and early, I mean it. Doctors start making rounds at 4:30 A.M. SHARP! It was the usual parade; neurologists, pulmonary specialist and surgeons. Then it was off to radiology for CAT scans, X-rays, and MRI’s. Larry and Jeff made it in around 9:00 A.M. My brother John from Kansas and my sister Jan from Arkansas would be coming in this morning.

Whenever a doctor or nurse comes into my room first thing in the morning, they always ask, "What day is it? Tell me where you are. What's your name? Do you know why your are here?" This is going to get really old; especially since I can't remember the name of the hospital.

My pulmonary specialist comes into the room. He tells us that I have non-small cell cancer. He asked if we were of northern European descent. Well, I had a great-grandmother named Lindquist. Everyone else is from England and France, and that was over 200 years ago. The doctor says that this type of cancer and the location of it is not necessarily smoking related. It is often associated with women of northern European descent. I stick my tongue out at my husband, “See, it’s not from smoking.” The doctor also wanted to know if I had some kind of life changing event within the past three or four years. Ohhhhhhhhhhhhhhhhhhh, Yeh! A couple of them. He said often times that triggers the cancer and allows it to take hold. He also tells us that the tumor on my lung is less than 3 mm. in size, did not involve any nodes, is regular in shape and is on my right side in the top portion of the lung. Since there weren’t any nodes involved, it must have spread through the blood.

My neurosurgeon is Kris Smith. I like him right off the bat. He is pleasant and professional looking and always has a smile on his face. He wants to do the surgery right away to remove the tumor on my brain. They aren’t wasting any time here. We tell him that we want to do it tomorrow since my family is just coming in. Jeff still has some reservations about this. He thinks it’s too risky. I try to listen to everything but I finally give up because I can’t concentrate anymore. I tell Luanne to not pay any attention to them and just talk to me. Dr. Smith takes every one (except me) out of the room and shows them the MRI or CAT scan (whatever). He shows them the tumor and his procedure for removing it. It is on the left, above my ear and just to the front. This is the part of the brain that controls speech. There is a lot of swelling and edema there and that is why I am having trouble with speech and math. Basically, he is going to drill into the side of my head, insert a camera and whatever tool he's going to work with, fold the tumor over like taco and slip that baby out of there. Furthermore, he's going to do all this watching it on a TV!!! The ultimate Nintendo game!

Dr. Smith's shadow is Dr. David Brachman. I say shadow only because Dr. Brachman is shorter. He is every bit as proffesional, knowledgable and pleasant as Dr. Smith. Dr. Brachman is a oncology radiologist. I like him alot too and I will talk more about him later.

So, the surgery is set for tomorrow, Tuesday at about 1:00 P.M. Time for everyone to go home and get a good nights sleep.

Rest Stop 1: Denial

2005-07-31T20:43:00.000-07:00

Saturday July 30, I awoke in my own bed in my own house. Wow, does that feel good. My oldest son, Nick drove from San Diego and Jeff spent most of the weekend here.

Larry is freaking out because there are tax reports that need to be filed for the end of the quarter. I already had done most of them several weeks ago, but I hadn't finished the federal. We sat down at my computer. I showed him how to pay the bills and enter it in the accounting program. Then we tried to work out the federal 941. Talk about the blind leading the blind! My accounting program pretty much does everything for you. The problem is, Larry had never done one before and I acted like I had never done one before. I kept telling him it didn't matter and what I meant to say is that it would wait because there isn't any money due so there is no penalty for filing late. Anyway, it didn't get done.

Luanne brought groceries over. Once again, she saved the day since my refrigerator was pretty bare.

Larry, Nick, Jeff and I were talking about my predicament. Nick said I shouldn't be surprised about getting lung cancer since my dad had died of it. "Well, first of all, other than my dad, no one dies of cancer in my family," I said. "Everyone dies from strokes or heart attacks," I continued. "At the very least, I thought if I did get cancer, it would be when I was in my 70's. I certainly didn't think I would get cancer at age 51." "That was my reasoning. I took a gamble and I lost."

Later in the evening, Larry and I were talking. I don't even remember what we were talking about, but he told me that this was terminal cancer. I had never thought about that. Briefly, for a few seconds, I cried. I'm not afraid to die. I just don't want to yet. I want to see my grandson grow up. I want him to know me. I want a granddaughter. I want to see my kids establish their careers and see how they develop. I want to see if some young lady captures Jeff's heart and he gets married.

Sunday July 31: Here is the plan for the day. We are going to go the St. Joseph’s hospital to the emergency room. That is were Barrow's Neurological Institute is located. The reasoning behind this is that when you go to the emergency room, they have to accept you without a referring physician.

I talk to my brother and sister. They are planning on flying in to Phoenix tomorrow. I must be dying!!! I also call my mom. She knows I am going to the hospital but I don't know how many details she knows. I just can't bring myself to tell her the sobering news. So I figure it's best to let her believe what she wants to believe. Later I would find out that she knew pretty much everything.

About 1:30 we get into the car and head out to St. Joe's. Everything went fine and we just had to wait for a bed in the Intensive Care Unit.

The Journey Continues

2005-07-29T20:30:00.000-07:00

Tuesday, July 26 thru Friday, July 29

I wish I could tell you that upon awaking in Good Sam I felt better and started improving. It was quite the opposite. In fact, it was almost like I didn't have to try to act "normal" anymore and I gave up trying. Anyone who knows me, knows that the word submissive is not in my vocabulary; but, if someone had opened a window and told me to jump out, I probably would have. That should give you some idea of the affect the tumor had on my personality.

The first order of business for the doctors was to see if they could get the swelling down on my brain. They started me on decadron, a steroid. To keep me from going into seizures, they started me on dilantin. That takes care of my brain for now.

The next thing was to see if they could figure out what was going on in the lung. They kept calling it a "lesion." Sometime during the first day they took a biopsy. Now, for a person who HATES needles, you would think that I would remember this. That needle would have to be pretty darn long to go from my shoulder into the lung, but I blessedly don't remember a thing.

Luanne came to see me in the hospital every day. One day, before the medicine kicked in, she brought an old friend that I used to work with, Chris. Luanne acted as interpreter. When Chris would ask me a question, I looked at Luanne and said, "Tell her." Thank goodness I had someone who knows me so well. Tina came to see me also. By that time, I was able to talk a little better. It's funny that I am able to remember everyone who came to see me but I hardly remember the nurses, doctors, or the procedures.

Now, I don't know what took so long with the lung thing. They took two CAT scans, three chest x-rays and a biopsy. You would think we would have a verdict by Thursday.

Friday, things started to pick up. Neurosurgeons, pulmonary specialists and oncologists paraded in and out of my room. I listened to what they had to say, which consisted of me sitting up in bed smiling. I listened but didn't comprehend. Larry and Jeff were my eyes, ears, brain and mouth. Basically, here is what they had to say. I had lung cancer which had spread to the brain. It was inoperable. They would start radiation and chemotherapy. The radiation to my brain would leave me with dementia after about six months and if I made it to 1 year I would pretty much be a vegetable.

Now, I want to emphasize. Either of these tumors, in and of itself (although serious), would be a Stage 1. In other words, they were fairly small, no lymph nodes had been involved and probably would have been operable. But because the lung cancer had spread to the brain, it was now a Stage 4 and this is the protocol for Stage 4 cancer.

Again, thank God for Larry. He took each doctor in turn out to the hallway and asked them this question: "If this was your wife, what would you do?" Two of them said, "I would take her to Barrows Neurological Institute." They felt that if anyone could remove the brain tumor, they could. This wasn't exactly for a cure, but for a better quality of life.

Larry asked for me to be discharged and for copies of my medical records.

Lesson 2: Doctors aren't Gods. Question what they have to say.

The Journey Begins

2005-07-25T23:25:00.000-07:00

"You have a tumor in your brain." That's about the only thing I remember the doctor saying in the emergency room on July 25, 2005.

Not that I didn't know that something was wrong. "I don't know what is wrong with me," was something that I had been saying for about six weeks before this. I noticed about mid-June that my handwriting was changing to a scrawl. I remember wondering if it was a sign of old-age.

On June 20, I had an interview with USAA. I prepared for it knowing they put an emphasis on outstanding customer service. I called my best friend, Luanne, to see if she had any training material she could loan me. I picked it up at her house and studied it all weekend for my interview on Monday. I totally blew the interview. I couldn't remember a thing. After the interview walking to my car, I was going over everything in my mind. That's when it hit me; that was the worst interview I had ever done in my life. I wouldn't hire me. I called Luanne. "I don't know what it wrong with me. I blew it!"

The following weekend, I was cleaning Jeff's (my son) condo. It's not something that I normally do, but I was hosting a very special party at his condo that week. I was carrying clothes baskets up and down his stairs and I was getting winded. "Huh, I guess I need to get back to the gym," I thought. Little did I know it would go steadily down hill from there.

My oldest son Nick and his wife Elizabeth were coming for the party with my brand new Grandson Jadyn. This was to be my first look at him and I was so excited. Everything went fine as far as I remember.

My sister Jan called me from Arkansas the weekend of July 4th. She had a two-month-old Shiz Tzu that had been rescued and she wanted to know if I wanted it. The rescue always calls her because she can't say no and they know that she treats animals like they are people. She had already taken two from the rescue and I told her if she ever came across another to let me know. I told her yes after begging and pleading with my husband, Larry.

The next obstacle was getting the dog from Arkansas to Phoenix. Sometimes they are able to hitch a ride across country, but no one was coming west, so we were on our own to get "Macy" out here. It dawned on me that the rodeo in Attica, Kansas (my home town) was the last weekend in July. Jan had mentioned that she was planning to go to that because a lot of her classmates would be there. After laying out a plan to fly into Oklahoma City and driving to Attica, Larry gave the plan his blessing. I called Jan to tell her my plan. I got the answering machine. I began to tell her what I was planning. I couldn't find the words and it came out a garbled mess. Finally I blurted, "Oh, just call me." Later she would tell me that she just thought I had one glass of wine too many.

Around mid-July Larry came across an office chair at Office Max. Since his has been falling apart for a couple of years, he decided to buy it. When we got it home and out of the box, he assigned the task of putting it together to me. Usually an easy enough chore for me. I just sat there and looked at it. I couldn't figure out what to do with it. I just laughed it off. I still didn't think anything was wrong with me even though at this point I was really having problems with my speech.

Also about this time, we went out to eat with our son, Jeff. I always pay for the meal because I am the only one who carries the credit card. I had the bill and was trying to figure out the tip. I just sat there and looked at it. Larry told me what to leave so I wrote it down. When I added it up, it came to less than what the meal was! "Give me that!" Larry said, "What in the world is the matter with you?"

July 23rd we had lunch with Jeff again and now my behavior was the subject of conversation. "Look at her," Larry said. "Do you think she looks right?" I smiled at Jeff. "I don't know," he said. "Her mouth looks like it is drooping on this (right) side." Later he would tell Larry I wasn't walking right either. I was kind of stooped over and walking with kind of a shuffle.

Sunday, July 24th I was having lunch with my three best friends, Luanne, Dena and Tina. It was a reunion of the cabin buddy's. Every year, we used to go up to my cabin in Heber for a weekend until Dena moved and Tina got married. At lunch, I tried not to talk. Just sit there and smile. That in itself was enough to send up a red flag because I always have something to say. Luanne told everyone that I had a new Grandson. They wanted to know what his name was. "It's uhmmmmmmmmmmmmm, well I don't know, it's a weird name." No one said anything but I got a few blank stares. After lunch, Tina left to show houses and Dena went to the bathroom. Luanne looked at me and asked, "What is wrong with you? What are you taking?" "Nothing," I said, "I've just been having trouble finding the words for the past couple of weeks." She asked me to follow her and Dena back to her house. I said I would drop by but I had to go over to Ross Department store to get a "thing". "What kind of a thing?" she asked. "A thing, to go on my trip. You know it's square, to put my clothes in." "A suitcase?" "yeah."

The next day, July 25, a day I will never forget but that I hardly remember. Luanne called, she decided to take the day off. I told her I would come over that afternoon to bring her book back. When I got there, she tried to talk me into going to the doctor. "I will go when I get back to Kansas if I still am not feeling well." "I think you have had a stroke." "No, I'm going to Kansas," I said. I left to go to the bank. Our bank is located in a grocery store. I took my deposit in. I needed to get some batteries, so I picked them up and proceeded to the self check-out line. OOOOOOps! No car keys and that is where my frequent shopper's card is. "Dang! Left the keys in the car again," I thought. I throw back the batteries and proceeded to the car to retrieve my keys. When I got to the car, there are no keys. So I back-track, looking on the ground and all around. Still no keys. I go to the customer service counter and try to convey to the young man there my dilemma. I'm sure he thought this old bat was either drunk or taking drugs, but finally I was able to get it across. No one had turned them in. I continued to wander around the grocery store. By that time, I was starting to get a little scared. I realized that as goofy as I had been acting, if I had to call Larry to come and get me, my trip to Kansas would be in serious jeopardy. I ask the person customer service again if anyone had turned in my keys. Then he came up with a brilliant idea. Had I been anywhere else in the store? The bank!!!!! Gosh, why didn't I think of that? I went to the teller and after giving a vague description of the keys, I received my reward. My keys! No sooner than the keys were in my hand, my cell phone rings. It was Larry. "Where are you and what are you doing?" I explained that I had just finished my errands and was on my way home.

Now, somewhere between the time I left Luanne's and the time I got home, (about 2-3 hours), Larry and Luanne got together on the phone. Larry asked if she thought there was something wrong with me. Luanne said there was definitely something wrong with me, that I had a stroke or something and I needed to get to a doctor. Well, that was all Larry needed to hear, someone else to confirm his suspicions. As I walked through the door when I got home, he was waiting for me. "We are going to the emergency room," he said. "Oh, no I'm not!" "I just talked to Luanne and she thinks there is something wrong with you too. Either you are going with me to the emergency room or you aren't going to Kansas." What could I do?

So we load up and go to the emergency room at Arrowhead Hospital, sign in and wait. After about an hour we are escorted to a room. A doctor comes in and Larry explains that he thinks I have had a stroke because the right side of my face is drooping and I am confused and having trouble talking. The doctor asks me my version of the story. I tell him that there is nothing wrong with me but my husband made me come in before I left on vacation for Kansas, anyway that's what I meant to say; I don't know what came out. So I told the doctor, "Now that you've seen me, we'll just go." The doctor said, "You may as well forget about Kansas. You're not going anywhere." He orders a CAT scan. When it comes back, he orders chest X-rays. Finally, he comes back about 8:00 P.M. "Well," he said, "You haven't had a stroke, you have a mass on your brain. You also have a mass on your lung, although we can't tell if the two are related. Have you ever had valley fever." "Nope." The doctor continues, "Nevertheless, we can't treat you here. We have checked with Barrows Neurological Institute and they don't have any beds. Banner Good Samaritan has room. We have ordered an ambulance to take you there."

"Well isn't this special?" I'm thinking.

I call Luanne. "Well, it wasn't a stroke or TIA. I have a tumor on my brain."

Lesson 1: Listen to your body and your friends and family.