Aortic Leakage and Irregular Heart Beats

Arrggghhh. Had to log back on to blog about all of these aortic arrhythmia attacks, I guess I am having tonight. I know that my heart got damaged by the AIM protocol I had with my first bout with cancer. I told the doctor on Thursday that I thought my aorta was leaking more, and that I thought that because I was having irregular heartbeats more and more. He asked when I got them, and generally, I am having them when I am resting, and tonight, after blogging and getting sick, I was laying down and they started up, probably over 8 times so far. Kind of scary. Note to self, make sure they pay attention to my worry about this issue.

I guess its not anything to worry about, since the beginner doctor didn't think it was worth worrying about. (I call him a beginner doctor because it wasn't Dr. Chawla that I talked to...it was one of the student doctor's that work in his office).

So, damn it. Another one, that's nine! I think I need a holter monitor to catch these in action.

I'll try to sleep. Maybe they will quit.

Sickness after Cycle Three

Today is day 3, well, the end of day 3 of the third infusion of Yondelis. I have reported to you that my tumors are "stable" at this time. I have ordered a copy of the CD so that I can view the scan myself. I got my infusion on Thursday in Santa Monica at Chawla's office. I took the first of my three Emend pills that combats nausea. The Emend makes a difference, but it is only three days worth. On day three, this morning, I put on the anti-nausea patch, which, according to the package, is supposed to last for seven days, however, it is not working as well as I thought.

I am sick now, as I am writing this. Not the upset stomach nausea, which I hate, but the nausea that sits in the back of your throat...I don't know which one is worse.

So, after a long day at work, I retreated to my nice clean apartment and immediately laid down to rest. I left this morning for work without any medications, so I in addition to the nausea, I was in pain, and feeling the effects of not taking the pain medication.

I took a pain pill and now, two hours later, I am feeling a little better. The back of the throat nausea is uncomfortable, but not unbearable, especially after I got sick about 30 minutes ago.

Tomorrow is the last day of my work schedule, for which I am so thankful. I know that I will probably be asked to fill in for work after July 5th, but if I am still as nauseous as I am today, without some other type of anti-emetic medication, I will probably have to decline.

Although I do not have plans for 4th of July at this writing, I am looking forward to having something to do, to celebrate not only our independence as a nation, but also to celebrate my intention of becoming independent of cancer and from the feeling of being unfulfilled at my career. I know that I can do more than what I am doing. I am not being the best that I can be. I know that I have the ability to achieve more, to earn more, to be a success, so as I pass this halfway point in my battle to survive this cancer, I have decided to create a new chapter in my life, and focus on a new ending. I don't want to have my days filled with despair and fear, I want each day to contain hope and survival again. To get to that point where cancer doesn't occupy my every thought, where cancer is not in every step I take, every trip I make in my car, every unoccupied moment of my life.

You, out there, you have the luxury of never having to worry about cancer. Maybe you do, because you are reading this, maybe my story will make you think about how fragile life is and how, in the moment it takes for a cell to divide incorrectly, you could be in my place.

My new goal is to consciously STOP thinking about my demise, but instead focus on my survival. I know it sounds strange to hear someone say they think about the end of their life too much, but when you are battling what I am, it is hard not to think about what will happen after I am gone.

How will my children and step children, parents, sisters, brother, friends, ex's handle the news? Will any part of my life have a profound impact on someone else? Although I know I made some particularly bad choices in my life, I think that I have also made some excellent choices. I love my kids and family and am truly sorry for the mistakes of my life, but we all make mistakes...some just make bigger ones than others (like me).

My youngest daughter wrote me a card on my birthday this year and said that she attributed her ability to write to me. I cannot put into words what that statement meant to me. She is who she is in her heart because of me.

I was raising myself while raising my oldest daughter, but she is a beautiful, thoughtful, caring, GOOD woman, and I like to think I had a little to do with that as well.

Oh, oh, oh. Sick again. I'll have to finish up these thoughts another day. I hope one of these other three meds for nausea will work right now.

Good night all. Thank you for stopping by.

Cycle Three

On Tuesday,I was leaving to go see my doctor in Santa Monica, dreading the drive by myself. Surprisingly, I went out to my car, Charlie was there waiting for me, to make it so I could use the carpool lane, he said. I was speechless...he remembered that I had an appointment and he remembered that I had mentioned that it would be nice to have someone else in the car so I could carpool. So I left to see Dr. Chawla, my onocologist, well, that's not exactly true. I went to get a CT scan with contrast directly downstairs from my doctor first. After over 2 and 1/2 hours, I went up to the fourth floor and checked in with Chawla's office. The people in the office downstairs told me that my doctor's office would have the results in 30 minutes. I was impressed! I told Chawla's office I wanted to wait for the results.

Doctor's Chawla's office drew my blood and then poked my finger to check my white blood cell count. I figured I would wait for the blood and the scan and start chemo the same day. Yeah, that wasn't going to be the way it worked out. First, my white cell was 93, 7 points below the level required for me to have chemo, so I had to go home, the vial of blood they drew would be good until Thursday, so that was good. I reminded them I wanted to wait for the results of the scan. It was then that the office told me that many others were told that Dr. Chawla would have results in 30 minutes, and that the likelihood of that was close to impossible. They said I should call them and complain, but I didn't...I just went home.

On Wednesday, I went up to Lomita to look at some rentals, and while I was in the area, I visited my grandchildren and invited my Granddaughter to come spend the night with me. I went home and was delighted to have the company of my 16 year old granddaughter.
We went to get movie tickets at Costco and went to see Knight and Day. I'm not a movie critic, but it was an excellent movie to my granddaughter and I....we fully enjoyed it.

The next morning, we awoken and went to Santa Monica for my results and chemo. When we arrived I talked to Vicki and she told me my scan result was stable. Stable...I felt confused. Kind of good news, and not bad news. I was torn in my emotions until I talked to one of my best friends, Terry (he was the best friend of my dearly departed husband, Dan'l). Terry knows some physics and he asked me if I wanted to put my car to go backwards, what did I do. I said that I put the car in reverse. He reminded me that I first stop the car from moving forward, then, with my foot on the brake, I shifted into reverse. What he was saying was that my tumors were moving forward. The chemo has caused them to stop, or become stable...next, they will start reversing. I thanked Terry for the analogy and changing my feeling of despair to a feeling of elation....in other words, I have hope!

After chemo, I thanked Madeline for accompanying me to chemo, and sitting next to me during the process, for going to the movies with me, and being a delight to have as company. She makes me laugh, and I love to hear her stories. She recently got a report card of grades that are better than she has ever gotten, and she is making better choices in her life and tells me she is getting along better with her mother, which made me so happy.

I picked up my Emend after driving home and took my pill immediately. I put the patch on in three days. I stopped and visited with my friend, Charlotte before heading home. I'm home now...feeling sick, even with the medication. I have work tomorrow, and will have to take a long lunch hour to remove the port. I'm going to check to see if Dr. Fink can give me the infusion of anti nausea meds and then return the pump and bag to Dr. Chawla's office on Tuesday so I don't have to miss an hour of work tomorrow.

Keeping my fingers crossed that I don't get too sick this time. This bag represents my third cycle....HALF WAY! Woo Hoo! I'm going to survive this and make some positive differences in my changes in my life when I do!

Keep the thoughts and prayers directed my way...also, anyone with information on 1 bedroom and studio apartments in Huntington Beach, Garden Grove, Westminster, Fountain Valley, etc., or in the South Bay, such as Lomita, Torrance, San Pedro or Long Beach...please let me know, I'm not looking move immediately, but if my situation changes, I may need to do exactly that without too much time to do so. Thank you all.

Apartment Search

I have decided to put finding a cheaper apartment at the top of my list. I could survive on the money I get from SSI if I could find an apartment that was cheaper. My apartment is actually about 400 dollars more than I pay, but I work for the company, so I get a discount. After my doctor's "talk" to me the day I was released, and his suggestion that I make surviving sarcoma my priority, I figured it would be a good idea.

I worked the four days prior to going to the hospital. I knew I was really sick. Over 100 fever for several days, coughing like I was bring up a lung and a weird pain whenever I took in a breath on my right side, but I didn't want to get in trouble at work, so I went. Have you ever thought, wow, they will see that I will come to work no matter how sick I am because I care about my job?....well, stop thinking that because they don't think that. They don't.

Of course, I got out of the hospital yesterday and today, I went to work for 9 hours. My doctor was funny, he said he could give me a note for my boss....I grinned and asked if he could also give me a note for my rent...he couldn't.

I feel better today, but I am still hot, coughing and it's 10:30, so I am hitting the hay. I do have an appointment with Chawla tomorrow morning, check my blood and ask him some hard questions. Wish I had someone to go with me...I hate facing this all by my lonesome!

Reality Strikes

I am waiting to get some food before I go home from my extended stay at Chez St. John's and I suddenly have this uncomfortable feeling about what has transpired these last couple days. My doctor came over to talk to me before I was released and I asked him why they couldn't just remove the tumors, after all, they remove the breasts when they have tumors. He told me he didn't think I knew the "gravity" of my situation, that they can't remove my tumors because they are systemic, not just tumors growing in different places. He said if they try to cut into them now, they would just spread quicker.

He said that they have to get the tumors to stop growing first, then they can consider removing them and that right now, I am not at that point right now.

I also have to go home to meet up with a home health care person who will be bringing me a breathing machine that will help with the crap going on in my lungs.

The doctor had that look in his eyes like he felt sorry for me, because I was stupid and don't get how sick I am. I am going to talk to Dr. Chawla on Monday and see what my true health condition is right now. I know I have to get that scan done before they really know, but the doctor said he felt I should be taking it easier, that work shouldn't be my focus, that surviving this sarcoma should be.

I can't lie, I am scared now. More than I was. I think everyone thinks they are invincible, including me...apparently, I'm not invincible.

I am home now, and waiting for my health care person to show up. I stopped and picked up all my prescriptions. Cori stopped by to say hello. I think I'll just lay down for a little while. Crazy how exhausted you can get from just driving home from Santa Monica.

Not again!?

Once again I thought I was going home. My doctor and the respiratory doctor both gave me the thumbs up on going home, but when Dr. Goldstein came in and examined me, he stated unequivocally "no". He didn't give me an option, he just said no. My white cell count had gone down (which could have been from the prednisone, the steroid I got the day before) and when he examined my ribs on the right side, asked me to take a deep breath, it did just that, it took my breath away. It wasn't alarmingly painful, but make no mistake, it definitely hurt.

So, here I am. Stuck for another night. I cried a few tears while I called my parents. I hate to admit it but now I feel lonely. The only visitor has been Cori, and that was for maybe 5 to 7 minutes, to move my car. My sister Karen is my advocate and she was a little angry that the people that are close enough to visit, haven't. She felt I should say something to them, and, as much as I hate making people feel beholden (it that the word, beholden?...you know what I mean) to me, or to feel guilty, I took a few minutes and wrote a message to Jackie, Charlie and Shannon and stated how I felt. The bottom line here is that I just feel sad and depressed and lonely.

The entertainment here is certainly lacking. I have some of the local stations, and about 5 other channels, including two "live" feeds from the chapel, with nothing happening and another "art" channel, which is just a powerpoint presentation of random works (in someone's mind) of art.

I did surf a few other blogs and came across one with some amazing recipes from some southern gal, recipes that are so good that you can taste them by just reading them. She has an uncanny ability to assemble her blog and her recipes so that they are as tasteful to the eye as well as to (I am assuming) to the palate. She also is a very talented photographer and as she details the instructions with charm and humor, she also includes pictures of the recipes as they should look while you are preparing them. She even includes a recipe on how "not" to make french toast, complete with pictures. I have bookmarked this blog and some of you reading this will, I am sure, be receiving a pleasure to your palettes, once I get out of here.

I look at the clock and it is almost midnight. I asked for my pain injection a little while ago and was kind of surprised when the nurse put it into my IV and I did not feel the tail tale "rush" of narcotic into my system. Every time I get this injection, I brace myself for the weird feeling it sends down my arms, but it didn't happen. Normally, I would just keep this to myself, but because it is so painful to sit in these beds for days on end, and sit on these tumors, I look forward to the brief respite from the pain. I wait for the lull that I typically feel about 10 minutes into the injection, but it didn't happen. I elected to call the charge nurse, Hannah (name changed to protect identity) to let her know...after all, I wouldn't want a nurse on my watch possibly taking the injections himself. She, of course, did what any manager would do and she assured me that this never happens and that maybe my body suddenly became accustomed to the injection. That the nurses want you to be pain free. Yada yada yada. Fred (again...name changed, because I don't want to implicate anyone without a blood test to say I did not get medication) seems like a sweet nurse, but without knowing him personally, I don't know what he is capable of. Here I am an hour into what should be a pain free existence, and I feel no relief from pain, so I know what I know. I even asked Hannah, the charge nurse if there was a test they could do real quick to see if indeed I got the injection or not, but she said no, there wasn't. I kind of doubt this. I would think there is a test, she just didn't want to get in the middle of something over 1 ml of delaudid. Unfortunately I am just going to have to be uncomfortable for the next two hours. I am really hopeful that he comes in the thirty minutes early.

Now that I finished my rant over the pain medication, I'll get back to the reason I have to stay. I researched a little on gallbladders and what they do and why we need them, What happens when they quit working and how they take them out and even read up on a few people that had theirs removed unnecessarily. There is something wrong with my gallbladder. I have noticed for several months now that when I take a deep breath, there is an unexplainable pain under my ribs on the right side. When I was first admitted, it was the first time I have been examined there, in that area, though I have often wondered what organ was under my ribs in the past. The gallbladder helps the body get rid of excess fat in the stool, from what I understand. It is the stuff I threw up in 2007 that caused me to think I was dying. The gallbladder has green slime in it, and people with high cholesterol have a tendency to have problems with their gallbladders...hello! I manufacture cholesterol, thanks to my genes. I'm guessing that one day, I will hear from a doctor that I should have it removed, mark my words.

So, its 12:30 and my bottom is hurting. I know there was nothing in that injection. I know it. I am kind of angry that they didn't take the time to just test my system and see that I did not get anything in that vial. Now I have to be in pain for another hour...I can do it, I've done it before, but I wish I didn't have to do this tonight.

Another Day in the Hospital

The doctor decided NOT to let me go home today, but did promise I could go tomorrow and take home oral antibiotics.

I just got one more unit of blood so a total of three units. I also received three shots of Neupogen (a white cell growth agent). I got my IV antibiotics and my last pain shot.

Dinner is on its way. I can't wait to get out of the hospital! I hope my animals are okay!

Blood Transfusions

My blood pressure was 80 over 50, which is dramatically lower than it is supposed to be. After making sure it wasn't medications causing the drop, they elected to type and cross-match me and order up two units of whole blood. Apparently, my bone marrow has dropped its production of blood because of the chemo. Getting pneumonia and a lung infection didn't help matters. Add to that me being bull-headed and stubborn and continuing to go to work when I was very obviously extremely ill and the end result is just what happened...I got put in the hospital.

I have gotten five or six breathing treatments since I arrived. I hate getting them, but I can tell they are working. At least they no longer do the back percussions that they used to do years ago...I don't think I could handle that right now. Guillermo is my CNA. Nurses and their assistants truly are heroes. Guillermo stops in almost every hour to see if there is anything I need, anything he can do for me. He gets me juice, crackers, helped me get into the shower and he just brought me a popsicle. I like Guillermo.

I am going to try to download pictures of my IV tree. It has seven bags and blood hanging from it. I have gotten two or three types of antibiotics and saline for hydration. In addition to my lung infection and blood levels tanking, I also have something going on with my gallbladder or liver, so that is under investigation.

Even though I have all of this going on, I feel better today. My cough is productive now and there isn't a lot of rumbling in my lungs when I breathe.

My step-daughter Cori is on her way to visit me and move my car. For some stupid reason, I elected to park on the street in a parking meter spot because my handicap allows me to park there without time limits. I thought I got lucky, but then I started remembering that if you park anywhere for more than two days without moving it, they tow in Santa Monica, so I tried to get my son to come and move my car, but he was worried about his car, so I called Cori and since her boyfriend lives out here, she agreed to come and move it for me.

I love her.

I hope I can talk my doctor into letting me out of the hospital tomorrow. I feel well enough to go so I want to go. He comes in at 7 or 8, so keep your fingers crossed for me!

Blood Pressure Issues

First night in the hospital wasn't as comfortable as I would have liked. Since the tumors are in my bottom, I am laying on them for 12 hours now and I have been in pretty much constant pain. In the morning they took my blood pressure and assumed it was the very small amount of pain medication they gave me, so they left me without any meds at all for about 4 and a half hours. When that didn't resolve the blood pressure issues, they called my doctor. He ordered a fluid bolus, which is just an extra bag of saline. While that was being administered another nurse came in and told me I needed to be typed and cross matched for a blood transfusion.

I just signed off on the blood transfusion. Scary stuff.

Hospitalization

Well, its off to the hospital. I went to my doctor's and they listened to my lungs, I have broncho pneumonia, which is compounded due to my low platelet and white blood cell counts. They pricked my finger and the blood squirted out across the room...a sure sign of very low platelets.

I noticed that my breathing continues to rumble in my chest after I breathe. I suppose that should have been a sign that I had fluid in my lungs, but I've never had pneumonia in my life, so how was I to know.

I do have a screaming headache, am coughing and generally feel like death warmed over, so I am a little relieved that I get to take it easy in the hospital for a few days.

Sick, sick, sick

Today I am finally feeling better. Since Tuesday I have been sicker than I have been in a very long time. The night before last, I was very, very close to calling an ambulance.

It started with a slight cough and headache, but within 12 hours it turned into fevers of up to 102, nausea and vomiting, horrible chest pains and relentless stomach pains. Every time I took even the smallest bite of food the stomach pains would cause me to curl up into the fetal position and writhe in pain. I took all three types of nausea medications I had and the nausea and vomiting would ease up, but the minute I swallowed anything, the cramps would return. That continued for three days and nights.

My daughter said that she thought I should try Thieves Essential Oils. She drove to my sister's house and dropped off this miracle oil. I don't know if it worked or if I had suffered through the worst of it, but after one night of applying the oil, I actually feel better. I am still coughing horribly, but I only have a low grade fever and I just had some homemade chicken soup and did not get stomach cramps afterward.

Because I couldn't take a chance and not work, I continued to go to work through the worst chest/stomach flu I have ever had. I don't know if it was the chemo that made my experience with this bug worse than what everyone else has experienced, but I am so thankful that I am now past the worst of it.

Still, a days work takes everything I've got, so to bed I go.

Angels Walk The Earth

Have you ever known people that literally are angels on earth? They are people that listen when you need to talk, show up when you need a friend, lend a hand when you need help, are there for you, in every way they epitomize the description of friend?

I have known two people that have truly been friends to me, through thick and thin, from years before I was ever diagnosed. They have accepted me as I am, without pause, they have again and again been a shining light in my life. They have loved me as family, taken care of me when I was ill, been frank and honest when I was making bad decisions, been the best of friends through good times and bad.

They are the kind of people that will turn to you when necessary and with poise and grace, read you the riot act about how stupid you are being, without making you feel stupid or ignorant. They are the kind of people that we all should be. They should trademark their ability to be kind and giving.

I just spent two days with them at their home and I wasn't the greatest guest to have. I was suffering the after effects of my chemo, felt sick to my stomach and on top of that, I felt like I was coming down with something. I had headaches, was coughing and just wasn't the greatest company. But somehow, they made me feel better, even though I was actually getting sicker.

I was welcomed with smiles and hugs, spent Memorial Day enjoying their home-made BBQ'd ribs, salad and corn on the cob, sitting on their back patio with two other friends, soaking up the sun, laughing and talking, and somehow, someway, they once again did something miraculous...they made me forget I had cancer. I had a little vacation from my reality, which is painfully evident to me every day, every hour since I was re-diagnosed on April 15th.

So many times I have sat and wondered how I have been so blessed to have friends like Laura and Paul. I wonder how I would have gotten through to where I am now had I not had them as friends. I don't want to even think of a life that does not include them.

My two friends are my angels on earth. If I could, I would dedicate a special holiday to honor them. I love them. They are as much a part of my family as my parents, siblings, children and grandchildren are.

The amazing part of their friendship with me is...that I know I am not the only one who thinks of them in this way. Being true and courageous friends is part of the fabric of who they are. They aren't fake, or pretentious, they aren't boastful or stuck up, they are from their very core good and kind people, and I somehow did something in my life that warranted them calling me their friend.

So, to you, my dear, dear friends, I thank you for everything that you have done for me. I know I don't deserve friends like you, but I am and forever will be grateful that I have been blessed and honored to have and call you my friends.

So my Memorial Day, was memorable. On a day where everyone was giving thanks to the men and women who serve our country and protect us from harm, I gave thanks to Laura and Paul, who in their own way, protect me, take care of me and gave me a few days off from my life and protect me from harm. I love you. Thank you for being you. Thank you.