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.................