Upper right quadrant pain

Today and for the last two days I have been suffering from upper right quadrant pain. I don't think it is a blockage, but it is hurting. I think it may be from throwing up so much from chemo. All I know if that I feel like crap...I liked my apartment until I got the internet guy here and he had me unload three bookcases and move them, to not have to have me move them at all. He cut a hole in my wall and I was afraid of spiders coming in, so a neighbor put silicone in the hole today. I ended up on the couch, with my messy apartment around me. I wish the internet guy would come back and put my bookcases back and then replace all the books back on them.

Well, one of my friends is going to get a cat scan. She has just found out she has cancer, so I am going with her to hold her hand...God knows I know about what she will be going through.

I have a re-certification for social security disability, which is more than 10 pages....dates, diagnosis, treatments, etc., how am I supposed to remember that crap?

Until later.

Chemo

Hello everyone.

I am here at Dr. Chawla's to get chemo. I always get a tummy ache before I come here...the morning of, actually and this morning was no different. They are running about trying to find my blood work results....acting as though they don't have them. Geeze...they are freaking me out.

I had an excellent visit with my darling grandkids yesterday. Brooke is such a character, she couldn't stop talking. She told me about halloween, and about her best friend Makayla. She also told me all of her teacher's names...she apparently loves preschool. Alyza came and sat on my lap, she is getting so big! When I was leaving she was fixing her hair in the mirror...it was poofy, but it was actually beautiful...she's so silly...she's growing up! Maddy came out briefly to say hello and give me a hug. The littlest guy, Chason has quite a personality. He was trying to do somersaults in the living room, making me laugh by scooting around on his head. He was a little wary of me at first, but warmed up quickly. It was so nice to see them all.

I got to see Shannon's photography. If you guys haven't already checked it out, please do. If you need professional photo's taken, see Shannon. She has honed her talents and does spectacular work! She had a client last night....at the beach at sunset. I am itching to see the shots she took.

I spent Thanksgiving with my parents, and then went to my sister, Diane's daughter's house. Nicole and Carlos had made their first turkey dinner and it was delicious. My dad made the turkey at Mom and Dad's house. We had some luscious sweet potatoes...one type with pecan's and brown sugar topping the baked goodness and another dish of sweet potatoes with a marshmallow topping. Dad also made stuffing inside the bird, which is my favorite, and Nicole had stuffing outside the bird. All in all, it was a wonderful Thanksgiving.

So, I am getting my chemo...God, I hate this. I will be sick tonight because I don't have a patch for nausea. I forgot it at home, but it falls off within a day or two anyway.

Sorry for the long span between postings. My internet connection will be hooked up later this week, so I will be better at it, I promise.

Here comes the icky chemo... watch it as it slides down the tubing into my body. Something from a sea squirt...that's what Yondelis is. I saw a sea squirt on a discovery channel yesterday....they are NOT pretty animals...they are brown and ugly, but I guess they have a property that keeps my tumors from growing, so I do what I must.

I guess this is all for now. I hate this part.

Another Scan

I had another scan today. I will find out the results later this week or early next week. I don't have time to worry this time because I am moving this week. I am moving 200 miles away from all family and friends. So, I won't know if it is the scan or the move that worries me the most.

Today I am renting a storage space just around the corner from the apartment and putting everything I don't have room for. I haven't moved in years, so this move is quite traumatic.

I have to rent a truck for Thursday and Friday and move all of my things by the weekend. Luckily, Wyatt is here to help me move, otherwise, I would have to hire a moving company...which I can't afford.

The only weird thing going on with my cancer is that I have a sore in my mouth. I haven't had one of those forever...I guess I have to call the doctor and let them know.

Busy packing...write more later.

Depression

Unfortunately, one of the major side effects of chemo treatments, or of having cancer is depression. I have been suffering from it much more this time than my last bout with cancer. Having to drive to the clinic every 21 days for chemo sucks, but also having to go back in for blood work and then the toughest is the scan appointments. The scans are difficult because I am claustrophobic, which makes the tube experience unnerving. I am also allergic to the contrast material, so I have to take meds ahead of time to combat that, but the hardest part is waiting afterwards...waiting to find out if my chemotherapy is keeping me stable, or...if it is no longer keeping me stable and I have to go on another regimen, much like my friend Adele just had happen. She was doing fine on Yondelis until last month, when she went for her scan as usual but this time she didn't get the expected news. She found out her cancer was growing like crazy. It's so sad, and hurts my heart.

You make these friends at the clinic. You make these friends and then you find out that they aren't responding to treatment. I know why I can't get a man to date me...as soon as I come clean with my medical history...they are gone quicker than you can say "uncle". Who wants to start a relationship with someone whose future is .... well, with someone who doesn't have a future, possibly. Who wants to take a chance with someone who is going through what I am? Employers don't want to take a chance with someone battling metastatic cancer. It's not hard to see why a potential suitor will hit the floor running when he finds out that the woman he is interested in has cancer. Relationships are difficult enough, but add to that mix cancer....ha! So yeah, you get the picture.

It would be so nice to have a man to hold me, to comfort me, to protect me, and yes, to love me. To love this body, despite the scars I have from battling this monster. What I wouldn't give to find a man who would love me, who would trace my scars with a finger and look into my eyes with love and tell me that without these scars, I wouldn't be there with him....to find a man who could look past the scars and see that there is still a woman inside, dying to share the love I have in my heart with that man.

So, I am depressed. Once again, I write this blog with tears running down my cheeks. What I wouldn't do to have tears of joy running down my cheeks.

I want to forget I have cancer. I want to be in remission so that I can get the scars I have fixed. I want reconstructive surgery to minimize the 17" healed incision in my hip. I want to live this life I have instead of spending every day behind the door of my apartment. I know why I haven't met anyone...how can I meet anyone if I never leave my apartment? I don't know how many women have met the man of their dreams sitting in their living rooms (save internet dating). I have joined those dating websites...but I end up just dating the website....I am afraid to meet because I feel insecure...I never used to feel this way. I was outgoing, sure of myself, confident, and would go out and pick up men...now I am terrified.

So I asked my doctor for antidepressants...see how that turns out. I'll let you know!

10 days out from Chemo

I am 10 days out from my last chemo and back at the docs to get my blood work and a few shots in the tummy to boost red and white blood cells.

Yesterday I spent the day at ER because I have been steadily losing weight because I feel sick when I eat. They said I had an ulcer...wow, really? Probably from worrying about this "C" word stuff. When I got home I read up on ulcers...you don't avoid spicy food now...the capstacin in the spicy foods actually protects the stomach lining.

I want to ask the doctor about anti-depressants. I hate admitting that I need them, but I do. I am sad. I am tired of this life, centered around chemo appointments. I can't find a job...I want my life to go back to the way it was!

Thursday - MRI and Chemo

Today I arrived to have my chemo discontinued until 3 more weeks. I also had an exam by Dr. Chawla and he sent me down immediately for an MRI to see if I fractured my spine or if I have mets to my spine or upper left thigh. I am severely claustrophobic so it was very traumatic for me. They ended up giving me some medications....valium and xanax so that I didn't freak out in the tube...I ended up crying through the whole thing. I don't know why those tubey exams freak me out so much, but they do.

I'm back up in Chawla's office now. They hooked me back up to the hydration and willl give me a shot of Neulasta before I leave. I guess I'll have the results of the MRI tomorrow.

The doctor said to go straight home and go straight to bed, so that's my plan. Thank God I have Jackie here to drive me home. Michael was here today, my chemo buddy. He called the place I am moving to and she said come Monday and she would finish up my apartment rental for me and Jackie....I'm so happy about that. I hate my bank. They gave me back the money someone named Terika Worthy took out of my account (600) and when the shisters put 49.50 back in, the bank thought they would put it all back in so they took back the 550 back out....so I am so broke....now I have to wait for the bank to finish their investigation before they put the money back in.....I can't believe someone would rip off a person who has almost nothing in their account. You'd think they would go for the person who has thousands of dollars to rip off, but no....they chose me.

Oh well, the doctor is heading over to talk to me...more later.

Wednesday : (

So I arrived at Dr. Chawla's office bright and early. Jackie dropped me off downstairs at the street entrance and left to a friends house. I thought everything would be perfect...I had dropped off my blood on Monday so I didn't have to wait hours, I just needed a quick finger prick to make sure the platelets were up to par....but they weren't. I was three points off and they wouldn't budge. I had to leave and go back home...so here it is Wednesday and the finger prick today was good enough to do chemo so we started.

I forgot my Emend so I told them I would promise to start it as soon as I got home, but apparently there was an update and the Emend and it makes the chemo drug stronger than it is, which might be why I had the problem with my liver, pancreas and the other organ (chemo brain)....so they said for me to just take the compazine, which didn't work for me or to try the suppository. The only other drug is one that is the one I think I'll go with....again, chemo prevents me from remembering the name, but I will edit this blog and put it in tomorrow.

The worst part of my day was when the doc asked me why I wasn't wearing my glasses. I told him it was hurting on the right side when I wore them, so I searched and searched and found an old pair of contacts....they are not a current prescription, so I have a headache that is really irritating, but when he checked out the lump, he said he thought it was another tumor....my heart dropped. Once another doctor came in to confirm his thought, they decided to do a physical and found another lump on my right shin....and both docs.. agreed it too was a tumor. I begged to put off the biopsy of both and they reluctantly agreed to wait....so if they grow even just a tiny bit, I have to have the biopsy immediately. I do have to have another opinion on the one behind my ear. They think the headache might be from the tumor, not from wearing glasses that are an incorrect prescription. It sucks because for the coverage I have from the government....Medi-Medi, it covers everything except a co pay for medications, but it does not cover any portion of vision. No vision exam, no contact lens exam, no frames and no lenses for transition....they also don't cover anything for teeth. No x rays, no cleaning, no fillings...for those of you who have coverage but are afraid to go, trust me....GO! I put off my teeth cleaning and the work I needed, and I put off contact lens exams because I had no idea how much those things cost.

Anyway...my appointment tomorrow is mid morning and I will be there....I told Jackie I could go alone, but she said absolutely not. She is going with me. I'm afraid of the part to discuss the surgery for the tumor's....the new ones, but also the consult that is to discuss why I can't lift my left leg to go up stairs....I don't know if Dr.Brien can do that or if I have to go to someone skilled with muscle and nerve damage...it's gotten significantly worse in the last month.

I guess my best news is that I didn't get kicked off the clinical trial today. The scariest part of this entry today is that I have a deep fear that I'm not doing as well as I used to think I was....and my emotional state isn't as optimistic as I used to believe. I asked for anti-depressants because I have noticed my temper is short. My kids, my grandkids, friends, sisters, everyone have been getting on my nerves, and I take it out on them....and I am so sorry....you know who you are....I love you, please remember its the cancer, not you. I love all of you...unconditionally.....xoxoxoxox

I hate the "C" word!

Today I went to get chemo but I was three points below what I needed to get it. If it is not up by Wednesday I may get kicked off my trial, which sucks...but what sucks even more is that everytime I go the doctor's give me a quick check up. That wasn't the part that sucked...the part that sucked was when he noticed two lumps, one on my right shin and the other behind my ear. I quit wearing my glasses because something was bothering me there...I'm hoping it is a bug bite or mosquito bite.

When he found the other lump, I started crying and he patted my back and said it wasn't "unexpected" at this stage of my disease. Of course it's unexpected! I didn't fucking expect it, nor did I want it (pardon my language). I was still crying when they finished drawing blood so he prescribed me some xanax, which I just said last night I didn't take....well, I'm taking it today, but I told him to only write a week or so worth, which is what he did.

I think I'm going to go lay down now...I'm sad and depressed and just want to rest for a little while.

I'll write more later...keep your prayers and thoughts and good wishes coming!

Time for Chemo....

Tomorrow I am heading back to Santa Monica to get my next dose of chemo...I hate chemo. Part of me wants to fail the blood levels so that I can return home without the "purse" of chemotherapy on my shoulder, but the sensible side of me knows that if I don't have the blood levels to continue my chemo tomorrow, I risk the possibility of being dropped from the clinical trial. If that happens I have to go back to standard protocol chemo. I will lose my hair, spend seven days in the hospital every 21 days with harsher drugs being injected into my system. I remember the last time I went though chemo, barely. I took every drug they prescribed, xanax, ambien, morphine, norco, lexipro, etc., etc., etc...yeah, even that list is daunting, and that isn't all of the crap they gave me. I even had an implanted morphine pump.

In the middle of that standard treatment, I also had radiation and because of all the medications they had me on, I got into a collision, on my way to a radiation session...a collision I have almost no memory of. My son came in one evening and said "Mom, what happened to the car?". When I walked out to the car, I was horrified. The hood was held closed with a couple bungee cords. I could only remember fragments, like film clips. A guy running up and saying he saw the whole thing, that's it, that's all I remembered. Luckily, I did give the person my information and obviously, made it home safely, but I still wonder how I made it the rest of the way to my appointment, which required a couple miles on the freeway, with a hood that was smashed, unable to latch and then how I made it back home. I had no memory because I was under the influence of the above-mentioned drugs, it is also why I keep this journal this time and also why I do not take whatever the doctors feel like prescribing.

I think I took all of those drugs because I was afraid. I am probably more afraid this time, but I am also trying to be more responsible this time. I take pain meds as needed, not because I want to mask my fear. I don't take anti-depressants (although I think I might need them at times). I did take xanax every now and then in the first month or so of my re-diagnosis, but then stopped. I take sleeping pills every now and then, maybe once or twice a week.

I think the best change I made was deciding to write this blog. I will now have a permanent record of what I am going through...hopefully to read many years from now.

Okay, I got way off track, so tomorrow is chemo...I hate it, but I don't. but I'm just putting one foot in front of the other, and hope that I get to do that for a very long time.

That's all for tonight...

Couple Quarts Low....Again!

I went to get chemo yesterday and they did one of those finger prick tests to see how my blood was. Apparently, it was not so good because instead of them just giving me a shot or two and sending me home, they wanted to admit me. I convinced them that I would head straight to the hospital, get the units of blood and if my blood pressure did not get significantly better that I would stay, as requested.

My blood hemocrit was not even 8, which was what prompted them to insist on the blood transfusion. I had been feeling a little tired, but it wasn't like I was exhausted...I just felt sleepy, really sleepy!

My day started at 7:00am, or actually earlier, but I headed out to my doctor's in Santa Monica first thing in the morning, and by the time they finished their testing and wanted me to have some blood it was around 9:30am. I arrived at St. John's at 10:00 am. They did the type and cross match thing and told me (like I don't already know)...that I was AB+. They ordered the blood, had me sign the consent forms and about two hours later the blood arrived. It takes about two and a half hours to get one unit of blood...then you have to wait for the next unit to come from the blood bank place, so by the time I was done with the second unit of blood it was almost 7:00 pm. I had left home at about 7:00 am, so my day was definitely full.

I headed home and was exhausted by the time I arrived, so I just watched a little TV and collapsed. The doctor said to check back on Monday, so that's when I will go back.

Grand Canyon

When we sit and think about the beauty of our country, I don't think we actually are prepared for the jaw-dropping awe that you are in when you are standing in front of sights like the Grand Canyon. I saw the Grand Canyon yesterday morning. I watched as the sun rose over it and slowly revealed the beauty of the canyon. How did God create this masterpiece?

The park is undergoing some reconstruction and had some fences up to keep us out of some areas, but of course, I didn't let that keep me from entering. We were there so early in the morning, that no workers were there, so we slid in around the fence and got some other views of the majestic beauty of the Grand Canyon, that others cannot see, so I was smiling.

I was with Jackie and Miranda, so I should have expected them to surprise me, but I wasn't ready for Jackie jumping over the fence that goes around the perimeter of the canyon. She and Miranda ventured out onto this boulder that appeared to me to drop straight off, and a fall from which would have killed them, but there was another level just below her that would have easily caught her had she fallen...before I knew, however, I was begging her to come back to the safety of the other side of the fence. Before I knew, she dangled her feet over the edge of this boulder and before I knew, she was dancing on the boulder...scaring me and being frightened, I was crying, begging her to return to where I was. I finally calmed down and took pictures of the girls and I will post those to this website, and replace the blood transfusion pictures!

So today I am back at Dr. Chawla's, reality takes it's place back in my life. The nurse is here to take my blood and I am forced to remember that I have cancer. While I was on my trip, I was in pain almost constantly, but it was okay because I was seeing America. We went through California, Arizona, New Mexico, Texas, Oklahoma and finally, Missouri. We saw the petrified forest and the Grand Canyon while on the trip, but while in Missouri, oh my goodness...Jackie made it her job to make sure I saw as much as Missouri as I could in the short time there. We went to the St. Louis Zoo...FREE! Free! It is free everyday! It is huge! I got a couple videos while there, including one of two endangered wild horses that decided to try to make some babies while I taped them....funny! She also took me to Sculpture Park, this amazing park with a trail to walk on and these beautiful sculptures that were apparently donated to the park by different artists. I got pictures of those too.

Jackie also took me to Viviano's. If you ever go to St. Louis, be sure to stop in at this little Italian diner. I got Jackie's favorite, Pasta con Broccoli. It was delicious! It is family owned and it isn't one of those places where you take a seat and then order. You order at the counter and then take a seat and they yell out your order number....I wasn't ready for the explosion of taste that made it's home on my palate. I think they used a vodka sauce, the pasta was small shells, with broccoli and mushrooms and then it was topped with a healthy sprinkling of romano and parmesan cheeses. I am going to try to re-create it at home this week.

Okay, so the nurse said my platelets were extremely low, which justifies all the bruises I have seen on my body as of late. I have to get a shot to increase my levels and return on Thursday to hopefully get better results and receive my monthly dose of chemo.

I also have some more homework to do. I don't want my life to be a life of chemo every 21 days, so I have been told to check into a gamma knife with a radiologist to explore the possibility of removing my tumors without cutting me! Imagine that! I don't know how it is done, but it sounds like a plan to me!

So, no chemo today. Waiting on the doctor to give me prescriptions for pain and sleep...and back home, to rest from my week of exploring the sites of America.

Getting Away

I did something that was on my bucket list. One of my friends from my support group passed away and about a month before she passed she told me to be certain to take the time to do the things I put on my bucket list...so I did. I went on a little road trip and have to say that I am having a great time. Yes, I am in more pain than I am ever in at home, but it's totally worth it.

My daughter decided to move home, probably because of my diagnosis, so I drove to her Dad's to pick her up and get her personal items...i.e., books and clothes. Her dear friend, Miranda came along for the ride and to help with the driving. We went to the zoo today and had an amazing day. I was so sore from the walking, but oh my God!

I still have the drive home, but plan on stopping to see some sights on the way home. Miranda is not enjoying the trip and wishes she was home now, but I hope to change that on the way home...by stopping frequently and actually seeing some awesome, jaw dropping, american treasures. She has never been to a cave dwelling, a cavern, the Grand Canyon, Crater Lake.

Loving this week! I feel like I am living instead of just surviving.

Getting Away

I did something that was on my bucket list. One of my friends from my support group passed away and about a month before she passed she told me to be certain to take the time to do the things I put on my bucket list...so I did. I went on a little road trip and have to say that I am having a great time. Yes, I am in more pain than I am ever in at home, but it's totally worth it.

My daughter decided to move home, probably because of my diagnosis, so I drove to her Dad's to pick her up and get her personal items...i.e., books and clothes. Her dear friend, Miranda came along for the ride and to help with the driving. We went to the zoo today and had an amazing day. I was so sore from the walking, but oh my God!

I still have the drive home, but plan on stopping to see some sights on the way home. Miranda is not enjoying the trip and wishes she was home now, but I hope to change that on the way home...by stopping frequently and actually seeing some awesome, jaw dropping, american treasures. She has never been to a cave dwelling, a cavern, the Grand Canyon, Crater Lake.

Loving this week! I feel like I am living instead of just surviving.

Bone Biopsy

When I went in for my CT guided biopsy, it was not what I thought. I took a look at my bracelet that they put on you when you get checked in for a procedure. It said "bone biopsy". I freaked out. It was not a pleasant procedure. I am still awaiting the results. Each day I call my doctor and his secretary promises he will call, but he hasn't. I will call tomorrow until she can't stand the sound of my voice. Until she recognizes my voice! I am afraid, but Christina, his other assistant said "usually, if it is bad news, the doctor would have called sooner". So I am banking on that statement.

I am due for chemotherapy on Monday, so I have to have another blood test to see how tanked my RBC are...they aren't good enough yet for chemo so I have to wait a week more, but I have to have an injection in my tummy this week to stimulate my bone marrow to create red blood cells.

I will write tomorrow when I get the results. Keep your fingers crossed for me!

I'm Back!

I am sorry for not writing for so long. I got to a place that wasn't good to be in. I was depressed, overwhelmed, sad, afraid...and putting that down in print would have made it even more real, so I let my emotions take over. I should have known that putting in down in words probably would have been therapeutic, like it always has been, but I couldn't see that far.

Let's see, what did you miss? Well, I had another round of chemo which, as always, wreaked havoc on my blood counts, but I survived. I am due on Thursday for my next round of chemo, so I'll have to go pick up the Emend pills, which help me keep from being nauseous.

As for my emotional health, well, it has been less than desireable. I have found myself crying a lot more. I think the bulk of my problem is that I feel like everything is falling apart. I haven't worked for over a month because of the side effects of chemo, so my financial health has also suffered greatly. When you don't know where you will hang your hat two months from now, it makes even the healthiest of people stress.

I had to have another scan. Everytime I get a scan I freak out. I never know what they will tell me, and even though I try not to worry, I can't help it.

I have had another tumor on my left side, the site of the original tumor. This tumor has remained stable, along with the other tumors on the right side, which means it hasn't grown...well it hadn't grown. It did this time. At the request of my chemo doctor, I made an appointment with Dr. Brien, my orthopedic onocologist. He said he wanted to do a CT guided biopsy, as soon as possible.

I know it's crazy, but I am frightened. The scan also showed a very small growth on or in one of my kidneys. The chemo has kept all stable, except for the two I mentioned. The CT guided biopsy will take care of the new problem, or prove that it is nothing...which is what I am hoping to hear.

Well, I am whipped. I will write tomorrow and promise to keep my blog updated from now on.

In the End

In the end, my doctor told me that my blood counts sucked. They ended up dropping again, which made my RBC 8 and my platelets 30. I got a shot of Arenesp (I think that's what it is called), it is a shot to increase my ANC. They wanted to give me a shot of Neumega, a drug designed to increase my platelets, but they weren't sure my insurance would cover it, so I have to call back today to find out if I can get it...if I can, I will go back tomorrow.

I think Chawla is worried about my survival on this chemo. He seems concerned about the situation with my blood. He always talks to all of the other nurses and doctors about me when I am there...kind of secretively..just whispers you can kind of make out, but not really.

I know one thing. He won't let me go back to work until at least Wednesday. I asked and he was like....yeah...NO.

Sandy

Crap

The doctor just told me my blood has once again dipped below what it was 2 days ago...even after the transfusions....he is checking into giving me Neumega, an injection for boosting platelets...he is checking to see if it is covered by insurance. I'm freaking out right now.

What's next?

Today, my car broke down on the way to Doctor Chawla's office. It started overheating and when I stopped to put water in it, it poured out from underneath...I couldn't put water in fast enough to make a difference. I ended up contacting my good friend, Terry, who came to my rescue. Has taken me to Doctor Chawla's and will help me get my car to the mechanic when I get done here.

Sometimes it just overwhelms me and I end up crying like today, thinking...geeze, what else can go wrong? I am in danger of losing my job, am in and out of the hospital, my organs are crapping out on me, I may lose my apartment and have to move in a short period of time...AND to top it off, I am battling cancer, and now my car decides to break down...how can I not be overwhelmed by it

all?

So I am at Chawla's, my temp is 98.8, good, no low grade fever. My blood pressure..hey, I didn't get my blood pressure when they did it, I'll get it when they come back.

Terry will take me by the hospital to get everything I left there...its only a few blocks away, so no reason not to get it today.

Well, I'm going to rest a little now, and report back after this appointment with the good or bad news.

:) I'm thinking good thoughts!

Results

The doctor said that my gallbladder doesn't function and will have to be removed, but that can't happen until I am better. They may have to do it the old way, called open surgery. Open surgery means that they make the old incision, like a big straight line cut into my upper abdomen, so if something goes wrong they can get in there quick and stop bleeding, etc.

I go see Doctor Chawla tomorrow morning. I have several questions for him, one particularly about this surgery and about me possibly hitchhiking or piggy backing a clinical trial in Boston.

I didn't want to think about other clinical trials, but I guess I will have too. I want to be around to see all of my kids become successful in their lives...and that might take awhile, so I am going to have to figure out a way to stick around so that I can do just that.

More later.

Gastroenterology Doctor's Thoughts

This morning I had a visit from the doctor who will eventually end up doing whatever final surgery is done to the "stent" that is in my biliary duct now (from the last hospitalization in Fountain Valley). He told me that he was the one who had ordered the tests this morning and that they are designed specifically to figure out not only what the doctor in Fountain Valley used to unblock the duct, but also, and most importantly....what caused the duct to become blocked.

He discussed what he thought the reasons might be...and his discussion shocked me. He said it was either caused by a gallstone, which I already know not to be the case.... his other explanation for the blockage was that my cancer has metastasized to my liver. These words spilled so easily from his lips. He was matter of fact, to the point, stoic almost. I waited for him to exit my room before I allowed my emotions to escape, and as my tears flowed, I thought of that commercial where the girl says she was informed she had cancer...like it was a grocery list.

I know this doctor is a good doctor, and maybe I make it seem that I can take the information in stride, I know I try to seem knowledgeable and I want them to be honest with me.

I now await the next pain medication shot, to numb the emotions that are so raw at this moment. To go then to get the test so that I know the reason my organs shut down.

Of course, I will report the information back here...so until then!

Scans

They truly don't know what is wrong with me, so the testing will now commence. Tomorrow morning I will get an MRI, MRA and a HIDA scan. The first one, I have had many times. But I have never heard of an MRA or HIDA...so I looked them up.

I got two units of blood last night.

An MRI shows bone and soft tissue...and MRA shows deeper into the bone and blood vessels, and a HIDA scan is to see what is up with my gall bladder, or the entrance to it that the doctor did last week...the tube or stent he installed.

I also have a consult with a surgeon tomorrow also, to try to plan and schedule my surgery to either remove the gallbladder or to open it up.

I am very uncomfortable here in the hospital. I am sad, confused and worried about my future. I wasn't ready for this. I felt absolutely fine the other day when I arrived at the doctor's office. I expected to talk to my doctor and either go forward with chemo or not. I did not expect to have a host of nurses and doctor's hovering and scurrying about, getting blood and making calls, discussing me, just out of ear shot. It's scary.

Doctor Chawla came up and put his arm around me yesterday, swearing to take care of me. Once again, I am sicker than I thought. I immediately got a myriad of blood tests.

I begin and end each day the same way...laying in this hospital bed, staring at the television or posting on facebook. I worry about my apartment and Molly, at home wondering why I am not coming home.

Pain control is an issue. Laying on the tumors is painful, yet there is nothing they can do about it. I walk after meals and snacks, I try to walk to the outskirts of where they allow me to go. It's about time for pain meds now. I will call for it when I can't handle the pain anymore.

I'll try a nap now. Thanks for stopping by to read my blog!

Admission...again

I am being admitted, again. My blood counts plummeted again, maybe a reaction to the blood?
They are "critically" low. I also have a fever, suggesting perhaps infection. Anyway you look at it, I am screwed. I have to have several units of blood, they have to run a battery of tests....I'm in for at least a few days. I hate the beds there at St. Johns....not comfy at all.

Damn it.

Cycle Four?

I am here at Dr. Chawla's today to try to talk to him about my concerns, but even though they said he would have time, he barely talked to me before he moved on to the next person...admittedly, they are very busy today. I am now waiting on a blood draw and then I will wait two hours for the all clear as long as my platelets are okay. I've been here over a half an hour and still no blood draw. I guess I am just going to have to wait.

Tired and done...

I haven't written my "feelings" lately, kind of afraid to put into words what I am feeling, but here goes:

I am feeling overwhelmed with chemo, hospitalizations, blood levels plummeting, being blindsided by bizarre random organ failures that hurt more than giving birth. Having to endure surgeries, blood transfusions, platelet transfusions, shots, antiobiotics, it's all too much. I want to stop. I am a strong person, but I can't do this anymore. It's killing me. What's next? I think I am feeling better, but I get hit from the back of my head by something else. I've had pneumonia, pancreatitus...which in and of itself was the worse hospitalization ever.

I want to stop. I want to stop...with tears streaming down my face, I want to STOP. I am done. I am not strong enough. I can't work, get chemo, go to the hospital, get surgery, go to work, get chemo, get shots, get blood, get fluids...it is never ending! I always thought myself a strong individual, but I obviously am weak when it comes to this...so a trip to my doctor's office on Tuesday will end up in me talking to Dr. Chawla about what my real prognosis at this time is and what stopping will do...at least for awhile, until I am healthier.

I heard from Dr. Fink's office that "after" this clinical trial I can piggyback or hitchhike to another...which got me thinking...so this clinical trial isn't it. I am not going to be done. I am going to have to do this for a long time. How do people do this? I am spent. I need to find an apartment that I can afford on my measly social security disability payment and get it, quit my job and just do this...which makes me even sadder. This will be my life...chemo home rest chemo home rest...new trial, home rest. Will it end? What kind of quality of life is that?

Not a good week for me.

Why?

Today I am finally feeling better. I am still in pain, but it is decidedly less. I have decided to be at my doctor's office tomorrow morning, first thing. I want to get my liver functions done and I want to get a blood test done that tells definitively whether or not the problem I had was caused by some freak blockage or because it is in someway related to cancer. I looked up my symptoms and there are some indications that this type of problem can be caused by several things, the two that stuck out were bile duct cancer, or tumors, causing a blockage, and the other is that it can be caused by a immune deficiency problem. Obviously, I am hoping that mine has been caused by the immune deficiency.

There are tumor markers that the doctor can test for, so I will ask that they test for those first thing tomorrow morning.

I didn't fall asleep last night until almost 3 am. I couldn't lay down on my left or right side, I couldn't lay on my back, or on my stomach...the only choice I had was sitting up on the couch. I was low on pain medication because I hadn't filled my Rx for awhile, but luckily, I found an old script that was from May and was able to get that one filled.

I don't work till Friday, so I know that I will have some excellent opportunities to rest and relax before it is time to get back to work.

I need to take a break from this, so, I will get back to this subject maybe later tonight.

Step right up and pick one, any one...gall bladder, liver or pancreas....

While I had been in the hospital, you might remember that I spoke of a pain on my right side, up around my ribs. Well on Sunday I got a stabbing pain on my right side again. Even the day before it had prevented me from eating with just slight crampy type pains....that was Saturday. Sunday, I had the sharp stabbing pain that took my breath away. I remember thinking, feeeeewwwwwwwwww, that HURT. I even wrote myself a note and put it in my purse to share with the doc at Chawla's office. It happened again.....so I knew something was up. I went home and went straight to the couch, no food, just tv.

On Tuesday I got up and wasn't feeling great, but had promised Mom and Dad I was coming to visit, so after feeding a playing with my baby Molly, and giving Cowboy some attention, I drove out to Corona. I ended up laying on the couch after drinking some coffee. After a trip to Sams Club, I ended up on the floor in the bedroom I knew I was in trouble. I figured I would try to make it home with my groceries. I made it home but felt like I was dying. I called a few people and texted to get some help to the hospital.

Cori said she could make it, so she dropped what she was doing and raced to the rescue. She had to stop for gas and unfortunately, in her rush, hit a white pole across the back side quarter panel of her car, but she still came, and took me to the emergency room of Orange Coast Memorial, and after only a few hours in the ER, I was admitted to a room.

They ordered a CT with contrast. It took several days to get a doctor to come see me....I was in severe pain and basically was threatening to check myself out to that I could leave and go back to St. John's, where they knew me and I could be attended to by the staff that I trusted. That brings me to now. I had a ERC today, a Endoscopic Retrograde Cholangiopancreatography Exam Image done by a doctor Surinder Saini. They put in a shunt. My nurse when I returned was horrible. She started out nice, but became a walking disaster.

She first said she wanted to make sure I was comfortable, but then when I questioned her about my pain medication, she became very defensive. Luckily, my sister was here visiting to witness it all. She first came in and gave me my first shot of pain med and I didn't feel it, and she didn't empty the entire vial, she said she didn't want to put a lot of air into my line.....but once I complained, she was very happy to put the rest. I told her I didn't feel it and she said she did not give me the whole 2 ml because she was holding it for later, she didn't think I needed it. That was at 11:30. About 15 minutes later she came back in to give me the medication she missed and told me she was holding for later. I told her about my problem with another hospital and that I was happy I didn't have anything in my system so I could have my blood tested, and that I had called the charge nurse in that case, etc., etc., etc. .... Anyway, after giving me the remainder, she came in a little while later and I told her, since Debbie was leaving, that I was clear on the next time. She stated it would be later than I thought. I was upset and told her it should be at 1:30 and she said no, it will be 2:00. Even Debbie chimmed in and said that it would have been 12:30 had she not decided to "save" some for later. This was around 1:15....I knew I would be in pain by 1:30, especially after the recent procedure. She asked if I wanted her to call DR. FINK about the issue and get it approved. I told her that I have known Dr. Fink since 2007 and did NOT want her to wake up Dr. Fink in the middle of the night, that althought I was upset, I would deal with it until morning. She cam back at 1:30 with "good news", that she called Dr. Fink and asked anyway. I was so mad. I specifically asked her not to call and bother Dr. Fink and she did it anyway. She said it is good though. Dr. Fink said I could have 2 ml every 2 hours till 12:30 the next day, 6 more times, but then it was going to be 1 ml every 3 hours. I was still reeling from her calling Fink.

I told her not to call, and she did. I who does that? Unless she had something up her sleeve, this woman acting weird.

I just woke up for my 4:30 shot and she once again reminded me how good it was that Dr. Fink had agreed to what she said....nothing good is going to happen from that conversation she had....I'll write more later because I got a shot and I am still goofy, so this post will be edited later today when I am not so squinty eyed.

Brief Reprise

After my granddaughter came to visit, I had a very brief reprise from my nausea. I was so thrilled that my nausea medications were working! I had gone from feeling like death warmed over to having a day where I felt like cleaning the apartment, making cookings and just had a general sense that everything was going to be great. I was even thinking about trying to find some 4th of July plans...like going up to my sister's in Grass Valley, or visiting some friends in Oakland, perhaps even going up to see Casey and Holli and their children, but, like I said, it was a brief reprise.

Who do I think I am making some hifalutin plans like that? It wasn't "old home week"! I guess maybe I thought it was....silly, silly me.

Funny, how plans can change in the BLINK of an eye.................

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.

Cycle Two of Yondelis

I woke up yesterday and found my son asleep in the living room, he showed up to accompany me to chemo so I wouldn't have to fight traffic and could get in the carpool lane to shorten the trip. I was so thankful to have him along to keep me company.

Upon my arrival the doctor was a little angry that I didn't show up Monday as scheduled. I explained I would lose my job if I missed anymore time and that I had called on Monday morning to explain my need to change my schedule to today, and they acquiesced.

I barely passed the finger stick test so I had to do a blood draw and that test took two hours to get results. It showed my liver function as being off the charts but my white cells and platelets were still low so they elected to reduce the amount of Yondelis I am getting, and proceeded with my infusion.

I had to get an infusion of nausea medication first, and then take my Emend pill to keep the nausea away. I found out that the three pills DO NOT last 21 days, they only last the days I take them, so I am going to try to get approval for the patch that lasts the remainder of the days between cycles.

I went home with the Yondelis infusion and went straight to the couch to rest and fell asleep. I woke up and went to pick up my soup order from Mother's Kitchen, (my absolute favorite vegetarian place to eat) and they told me my soup order of Vegetable Soup with soy meat...with the wheat bread (about 2 inches thick and also a vegetarian/vegan recipe) with Earth Balance spread and jelly was ON THE HOUSE! Granted this is fairly inexpensive anyway at 3 or 4 dollars, I was still thrilled at getting a deal...only because they noticed that I was getting infused and asked about it.

I woke up at 1, a little sick but not nearly as sick as I was the last time. Today, I am feeling amazingly normal. I have not thrown up, which is a welcome change from the last time. I will be receiving my shot of Neulasta again, and next week I will again have to take home my Neupogen to give myself, which stresses me a bit, but I'll get over it.

I also got word that I have to have another scan next week...to see if the Yondelis is working. If the tumors have grown, they will have to change my chemo to the Ifosfamide protocol, which will mean that my job will go away, I will lose my apartment and will have to find a place to live within five days of being let go, which sucks. I put a message into the cancer hotline to see what, if any help I can get from them.

I am patiently waiting to get out of here. I only have a little more time to go and then my shot and I get to go see my wonderful daughter and her gorgeous four children.

I'm going to get a copy of my blood work so that I can start educating myself on levels and how my blood plummets and how it recovers after medicines. I asked about a sample of a naturally derived vitamin that helps white blood cell recovery from Mothers. It's called Wellmune WGP, or gluco polysaccharide, derived from Saccharomyces cerevisiae.

Here comes my nurse! Yeah! Almost done!

Tumor Troubles

Lately, as I lay down at night, I have been imagining that I could feel the tumor on the right side. I decided I was imagining things. Then, I started believing I could feel that tumor during the day, and found myself leaning to the left to take pressure off. For the last two and a half years, I have over-reacted at every visit. I kept being paranoid that it was back, but time and time again, I was proven wrong. So, when the doctor asked me today why I didn't tell him sooner that I felt a tumor growing, I told him...I figured I was just paranoid.

I was taken to an examination room where the doctor felt my right buttock and confirmed that the tumor was palatable, and about the size of a golf ball. On the scan, it was minuscule. Not even a month later, it has grown rapidly. I'm afraid that the other tumors are growing too, now.

The doctor said that the Yondelis hasn't had enough time to work and it was too soon to give up on it, so I will go back Thursday and hopefully my blood will be acceptable enough for me to go forward with the second cycle.

I want to go in Thursday and ask the doctor to just take them out, whatever size they are, just cut them out of my body.

So if I go forward with chemo on Thursday, I know that I will be sicker than sick for the next week, especially the first few days. They will do another scan about 10 days into the second cycle. If it does prove to be not working, I will be switched to MAID protocol, most likely, says Dr. Chawla. The other doctor told me that my hair will fall out after the first cycle of that chemo. It is similar to my old cocktail, so if I go back to that, I will go back to Dr. Fink and let her administer the chemo from the comfort of a hospital room and my local hospital.

I'm scared...

Injections

I have done three injections of Neupogen. Tomorrow the doctor will check to see if they did what they are supposed to do. I keep my fingers crossed.

Today I am going to church. I haven't been to church on Sunday since January. I am looking forward to getting a dash of hope. That's what church does for me. It fills me with hope. Hope that I'll beat this, hope that I'll beat this, hope that I will beat this...

I cry all the time now. Tears stream down my face because I don't like thinking about surviving. I already survived? It isn't supposed to happened again, I am in major denial. I can't imagine having something worse that cancer, yet one of my brother in law (my favorite) is battling or trying to survive ALS, I have no room to cry.

I hear the honk of a horn....Terry is here to get me for church....more later.

Injection Frustration

As I sit on my couch and peer at the contents of the bag given to me by my doctor, I heave a sigh. I'm scared. I know I have to do this, and many of you may think it silly of me to be scared of something I have done countless times before. But yet, I am frightened.

I take out the cold little glass vial containing the Neupogen out of the refrigerator and roll it between my palms to warm it before I inject it into my skin. It takes several minutes for the vial to warm. I assemble the necessary parts on the coffee table and examine each one. Two alcohol wipes, check. One 25mm needle, check. One 20mm needle, check. One sterile syringe, check. One warmed vial of Neupogen, check. Bandaid, check.

Another heavy sigh leaves my mouth making an audible sound. How can this be again? How can I do this all over again? Tears stream down my face. Fuck Cancer. I hate you. I hate what you do, I hate that you invaded my body. I think I can feel tumors growing, which you caused. I looked up the word cancer. This is the description:

Cancer /ˈkænsər/ ( listen) (medical term: malignant neoplasm) is a class of diseases in which a group of cells display uncontrolled growth (division beyond the normal limits), invasion (intrusion on and destruction of adjacent tissues), and sometimes metastasis (spread to other locations in the body via lymph or blood). These three malignant properties of cancers differentiate them from benign tumors, which are self-limited, and do not invade or metastasize. Most cancers form a tumor but some, like leukemia, do not. The branch of medicine concerned with the study, diagnosis, treatment, and prevention of cancer is oncology.

Cancer affects people at all ages with the risk for most types increasing with age.^[1] Cancer caused about 13% of all human deaths in 2007^[2] (7.6 million).^[3]

Invasion. That's whats happened to me. I have been invaded by a malignant tumor. One day I will be one of those statistics. This I have accepted. I won't get to die an old woman of "natural causes". I am mad at cancer for what it has done to my body.

I direct my attention back to the table. Neupogen is good for me, it builds white and red blood cells, or helps them build. I wash my hands until they are a little red from the heat of the water, because I don't want to chance infection. I pick up the 20mm needle and peel back the wrapping just enough to expose the end of the connection to the syringe. I pick up the syringe and take it out of its plastic case and attach the end to the exposed end of the needle and pull off the cap. I pull back on the plunger to about half way so I can inject some air into the vial...I pause and stop to think where I might pick up some clean air, and I chuckle...who thinks of that?

I pace a bit staring at the table and the debris from the items I am using. I have to give myself a shot. Deep breath and sit. I grab the first alcohol swab and with one thumb I confidently pop the metal cap off the neupogen...ha! I feel like I'm a professional doing that! I wipe the sterile rubber thing in the center...just in case.

I stick the needle into the vial and push in the dirty air from my apartment and draw out the liquid, slowly pulling the needle out to draw out all that I can. I replace the cover to the huge needle and twist it to remove it from the syringe and pull back the plastic sheath from the other needle, the smaller, shorter, thinner needle that will next go into my body. I twist it on and pull it out of its protective sheath and put it down.

The next alcohol swab is for me, for my skin, and I wipe it well. I have selected a chubby part of my tummy and pop off the plastic covering the needle. I slowly push up on the plunger until a little fluid escapes the tip of the needle and without hesitation I grab my skin with one hand and inject the needle in quickly with the other. The fluid sits in the syringe. I pull back slightly, no blood, good deal, in with the neupogen. It burns and is still cold! I leave the needle in for a second because I want it to disperse before I pull out the needle. I pull it out and the tiniest dot of blood and clear liquid escape. I press down with my alcohol swab and put on the bandaid.

I gather all the trash and items used and look in my closet, there is my "sharps" container. I deposit both needles into the container and remember when I put that container in my closet years ago. I wanted to throw it away, but you just never know, you know? I didn't know. I didn't think it would come back. No one thinks its going to be them. It's going to happen to someone else...not me, not me.

I was going on a hike. I was going to raise money for cancer. My cancer. I was going to walk the PCT. It was a big dream, but it was mine. I was walking everyday.

It's all so distant now. My dream. It's not going to happen for me. I won't walk down an aisle with the man of my dreams with my dad standing there. I won't be in a wedding...anyone's. Crazy, huh? Never been in anyone's wedding. No one ever....

Oh well, oh well, oh fucking well. No sense crying over spilled milk.

Blood Levels

Went to see Dr. Chawla this morning with the help of my almost daughter. The doctors gave me a finger stick, which hurt more than anything else they have done. Bad news. Platelet count is 36 and white blood cell is .9. Bad enough to cause me to get the choice that I was expecting. Hospital or stay home, stay away from people and no shaving, no falling, no driving, no interaction with pets. It's hard to stay away from pets, especially my Molly.

So I have neupogen for the next three days. Injections to the tummy, by me....owwwweeeee!

Back to the clinic on Monday to re-check. If my levels are still bad, I am going to have to be hospitalized....I won't get a choice.

Luckily, I am supposed to have an answer on my anti nausea drug tomorrow morning.

Tired....one thing that this chemo does do is make me feel as though I have worked out hard and am suffering the following day. My leg muscles hurt the most, I have bruising everywhere, big ugly bruises from the blood problems.

Going to bed....going to nap.

Surviving Nausea

It is 3:54 am in the morning, but I am up and sick. This is every night now. I have an appointment to check my blood in a couple hours, I'm going to ask them once again about Sunduco, a patch or Emend, a 3 pill system.

Blood Work and Bleeding

Apparently, the Yondelis has caused my blood levels to tank. I was at work on Mother's Day and got the smallest littlest tiniest papercut on my arm. I am talking a quarter of an inch cut. I bled, and then I bled some more. Then I got a paper towel and soaked it (talking a quarter inch long cut...tiny). Bled through several band aids. I called the doctor and he said to to come in, and if it didn't stop bleeding in the next half hour to go to the hospital.

Well, my blood level was 24, or was it 34. It's supposed to be in the 100 or 200 range, so I got three injections to give myself over the next couple days of Neupogen. I haven't had to give myself a shot in my tummy for over 3 years so I am a little nervous.

Other than the continuing nausea and vomiting, I actually feel just tired...like I ran a couple miles when I woke up and then did some jumping jacks and then stretched. My muscles hurt, like I have worked out. Also a side effect of Yondelis. I am day 12 or 13 now, so another IV infusion in 9 days. I have to go back to get another blood test on Thursday.

I called my old oncologist that is local. Dr. Marsha Fink. I was going to change doctors, but after my run in with an oncologist that said wait six to eight weeks and check back to see if the tumors had grown and dismissed me as inconsequential, I decided to go back to Dr. Chawla, who directed my care last time through Dr. Fink. I am growing tired of using a half tank of gas plus parking charges of 26 dollars every time I have to go to the docs office...so I called and talked to Dr. Fink. She has agreed to "talk" to me on May 20th at 2:30, so I will go see if she can help out locally with tests, visits, hospitalizations, so I do not have to travel quite so far to have something checked out.

I am officially "neutropenic" again! The doctor said..."no raw food, no salad, no fruit, no raw veggies, just no". I was aghast! How am I supposed to survive? No good food? Everything has to be cooked to kill bacteria. I can't see a dentist until my chemo is done.

Merck, who dispenses Emend, the anti-nausea drug says in an ad to call them if I need help paying for the prescription. Guess who I am calling tomorrow?

I am heading out to walk around the main street beach street faire. Need exercise!

More later!

After awhile, you learn
the subtle difference between
holding a hand and chaining a soul.
And you learn that love
doesn't mean leaning
and company doesn't always mean
security, and you begin to learn
that kisses aren't contracts
and presents aren't promises.
And you begin to accept your defeats
with your head up and your eyes ahead,
with the grace of a woman,
not the grief of a child
And you learn
to build all your roads on today
because tomorrows ground
is too uncertain for plans
and futures have a way of
falling down mid-flight.
After a while, you learn
that even sunshine burns
if you get too much.
So, you plant your own garden
and decorate your own soul,
instead of waiting on someone
to bring you flowers.
You learn that you really can endure
You really are strong
Your really do have worth
You learn and learn and learn
with every goodbye, you learn.

I got this from my daughter...although I have read it a hundred times before, today....just now, it touched a part of me that it hadn't before. It had meaning that was always there, but I just didn't need it then, or wasn't ready for it then. These words give me strength, hope and courage. I shall print them large on put them at work, in the chemo center, on my morning mirror where I get ready, so I can read these words each day and grow from them.

I love you my child of total wisdom...you bring me such great joy with your selections and choices of words....and that I had even the smallest part to do with making you you, makes me incredibly proud as a mother. You are wise beyond your years!