It's time for some news... I wish it was the good kind!

In January I had some new symptoms that needed to get checked out. Unfortunately, those tests found 2 spots on my brain. One, they said was cancer, the other, wasn't clear enough to know for sure. My doctor referred me to Stanford, so off we went. That was about the middle of Jan. 2016.

As a returning patient, Stanford had an appointment for me right away. The first thing they did was look at the images we took here and ordered new ones because they weren't very good. From the poor images, they counted 10 spots and said that once the better images were taken to expect up to 12. They scheduled everything and kept things moving very quickly! Before I knew it, I was on the table getting CyberKnife for a few days in a row.

I'm home resting now. Relaxing and recovering. I feel tired and easily get nauseated. They kept me on my current chemo schedule and its been less than fabulous. I start my week off today and I'm very grateful for it!

The success of CyberKnife will take about 3 to 6 months to see. We will go back to Stanford to take images. Those will let us know if there are any new spots and to see if there has been any growth on the treated spots. Since CyberKnife is not expected to be 100%, and I had multiple spots, I will need further treatments. Until then, we pray that they stay small, treatable by CyberKnife, and that chemo will take care of the cancer in the rest of my body.

So much has happened!

I went to Stanford and got a lot of great news! There has been a lot of progress for my type of cancer recently. Some treatments don't even require chemo. I've done some like that before. They are usually much easier to live with and are just as successful. The best part of the Stanford trip was my doctor! She is amazing! Very personable and so informative. She was easy to talk to and didn't give false hope. She gave me her email so we can bounce ideas back and forth if a treatment stops working.

When we got back from Stanford we started a new treatment right away. It was a hormone blocking treatment. I would get very unpleasant shots in each hip and an IV bag of a bone strengthening chemo once a month. Then I would add an oral medication for 21 of the 28 days in a treatment month. I felt OK the first month. The second month, the side effects were a little harder to handle. My stomach was a mess and I had to eat every thing I saw. So by the third month the side effects were really bothering me and my tumor markers were getting higher each month. Needles to say, we stopped that treatment.

So now I'm on a new chemo that is a lot like taxol that I took in 2009. It's a very painful one and I hate that, but I need to be on something. The pain is in my joints, where they are working hard to make new clean cells. I've always been prone to sore joints in wet weather so this just makes it worse.  The nausea is manageable. There are about 2 days after each dose that I'm a little uncomfortable. So far, other than that, it's a pretty simple chemo to be on.

During all of this, one side effect of he hormone treatment was anemia. I'm always borderline but on that treatment I just couldn't keep my iron levels up. So last Wednesday when I went in for my first dose of chemo I also got to go to the hospital to get a blood transfusion. The regular girls had some family illnesses so I had to go to a regular hospital room. I hope they are ok and their families are doing well!  Working with my chemo port isn't something every nurse in comfortable with. They learn about them in school but they don't really have many opportunities to work with them after that. My chemo nurses know this and set them up with what's called a pig tail, it's just IV tubes coming out of the port on my chest.

Even with access to my vein and a vial to type my blood the transfusion took about 12 hours. During witch my hubby had to leave and take my mother in law to the emergency roo.  I was very confused and having a hard time understanding and staying awake to know everything that was happening but I do know Tony did such an amazing job juggling both of us in 2 different hospitals. They had to take his mom to Fresno and he still took care of both of us! Luckily my dad was able to stay with me and took me home when the never ending transfusion finally ended. I was still really confused for a few days after the transfusion. I'm hoping that it was all from the transfusion and not the chemo or something else.

My mother in law is doing better. From what I understand there were some heart issues, fluid being drained from her chest, a stroke  and even pneumonia. She is back in Visalia resting and building strength so she can go home and be with her family. I wish I could have been by her side more often while she in Fresno. My dad and I did make it one day but that was all I could manage.

That's all for now :) I'll keep you up to date as more things happen.

September 2015 Results

After 7 months of being on the same chemo my oncologist has ordered a CT or cat scan to see how well or if the chemo has been working. While on chemo we have been checking tumor markers and noting my symptoms. Neither have been one way or the other very telling. The CT scan or cat scan, was done on September 9th. I got the results the other day and they aren't the best. Not the worst, but not what I was hoping to hear. There is a pretty big tumor in my liver. Last time we looked, there was a tiny tiny spot on my liver. After months of this chemo not working, that tiny spot has grown to a tumor that has taken over what looks like a third of my liver. I haven't gotten a copy of the report yet to know the exact size of the tumor, I just remember seeing how big it was on the screen as the doctor was reviewing the results.
As always, I didn't let my mind stay on the results very long. I immediately want to know what we can do about it. There are a few things we need to know before we can select a treatment. That means we need to go in for a biopsy. The radiologist decided that the best place to biopsy is the liver, so I will go in for surgery on September 30th for that. One of the things we are looking for, is to see if any of the receptors have changed. We are also checking another part of the pathology report that has not been checked since I was first diagnosed in 2008! (Gosh that was a long time ago!) If any of those things come back in my favor, we will have some easier treatment options to chose from. Possibly even multiple treatments at the same time. So it's important to get that done. Even if there are favorable results, there are only so many chemos available to me and then there are so many that I have already done and can not do again. Once you have been on a certain chemo, you build a tolerance to it and possible others. So the ones that have worked before aren't an option now. Choosing a chemo seems to be such a big deal and only getting more difficult as there are less and less to chose from as the years of treatment have gone on. So after the biopsy results arrive, I am going to Stanford to see what treatments and chemos they recommend. While we wait for that, I started a chemo that my doctor felt would prevent things from progressing and wouldn't eliminate too many good options later. That way we are not letting the cancer grow like crazy while we wait for tests and appointments. He said it is one that will knock my hair out.
Funny how so many chemos have worked before and the one that knocked my hair out this last time is the one that hasn't been working! I said along the way that I would be mad if I lost my hair and it wasn't working. But now that I know that's exactly what happened, I don't really mind. I've never really been bothered by loosing my hair. It's always been really long when I lost it too. The first time I lost it, I thought it would be so difficult, so I cut it short before I even started chemo. I was worried I would be so upset and I was scared about chemo and not feeling well and then being even more upset. So I went from short hair to a shaved head before my first treatment. This last time I lost it, I waited for it to fall out and then I cut it short. Only because it was a pain to clean up longer hair than shorter hair. Once it really fell out and looked really bad, I shaved it. It has started growing back in. It is about an inch long and really light. There is also a ton of gray! Last time it grew back in, it was curly and really dark. There was a lot of gray then too, but there is more now!
I will post again when I have news or a funny story to share, or really any story to share! Happy Fall and thank you for all of the birthday wishes and prayers for good health! I have been feeling very loved!

Tumor Marker History

    Here are my tumor markers since April of 2014. 

                 CA15-3(0-31.3)    CEA(0-4.6)

5/13/15              28.7               3.4

3/24/15              40.3               9.5

2/6/15                36.8               7.0

1/8/15                34.8               7.4 

12/11/14            28.7               6.9

11/3/14              29                  7.4

10/16/14           30.2               7.7

8/8/14               36.9               7.1

7/24/14             40.3               7.1

6/26/14             36.9               3.7

6/3/14               33.4               3.7

5/6/14               26.8               3.1

4/8/14               27.3               2.4

Tumor Markers are not absolute proof of what the cancer is doing or if it's growing or not. It is one indicator of what could be going on. This test is used with other information to guide my treatments and decisions. 

Life on Halaven

I have been on this chemo, Halaven, for a while now, but I haven't had very many full treatments and I didn't know if it was working. A full treatment means to receive both doses one week a part. So the first dose is on a Wednesday and the second dose is on the following Wednesday. The next week is a break and I don't get any chemo while I rest up and get ready for another round to kick my butt again. For one reason or another, many of the treatments have been interrupted and so the effectiveness of this particular chemo has not been determined and since I lost my hair for it, I would like it to be highly effective! Aside from loosing my hair, it has been one of the hardest treatments I have had. My legs are weak, numb and tingly. I am nauseated most days, I have headaches, and every tastes terrible. Except Reese's Puffs Cereal! I missed treatments because my blood tests would show I wasn't healthy enough, once I had to get a blood transfusion, that worked and I haven't needed another one since! Thanks again for all of the support and blood donations!! You guys are amazing! Other times I just didn't have a tumor marker test because the new doctor that came and went didn't believe in basing treatment on markers so much so that he rarely would test them. (I never let treatment stop or slow down with him, but he did over rule my requests to test the markers. Ironic since testing was the one thing many thought he did way too much of.) Anyway, I either didn't get enough consecutive treatments to test, or I wasn't getting a test to see if this chemo was effective. After talking with Dr. Hsu, he is substituting for himself :), we made it through enough treatments and then got the tests! I was pretty nervous but cried real tears of joy when I got the results! . My CA-15-3 went from 40.3 to 28.7, normal is 0-31.1. My CEA went from 9.5 to 3.4, normal is 0-4.6. You can see I went from off the charts to "normal". So I will continue to take this chemo until I am "normal" long enough for the doctors to determine I will stay there without the treatment. Until then I will happily be bald and feel like crap.

Radiation? Check!

Today was my 10th and final day of radiation. I'm exhausted! The cancer in my bones had gone into my right shoulder and was causing a lot of pain. It was hard to unload the dishwasher or even pour a glass of tea. After about 5 sessions of radiation, I could already feel a difference. Now it feels better than I can remember. My dad drove me to all of my appointments and I loved speeding the time with him. At first I thought I would just drive myself, but I'm glad he took me. There were so many days that I was too tired to drive. That's one thing about radiation, you might see positive results quickly, but it makes you tired just as fast. There have been a number of days that I took a nap for 6-7 hours. My brain is like mud. It's hard to concentrate on reading, even texts! But it's all up from here! I've finished my last session and will continue to feel better and will hopefully be able to stay awake longer than a newborn baby.

My First Blood Transfusion

Lately it seems that something has always come up to pause the chemo treatments, I need these treatments and want to get this new chemo started and at least make it worth loosing my hair! So this week I was finally able to get both rounds, making this my first full chemo treatment in about 5 to 6 weeks. While my white blood cells drop frequently and a simple shot will boost them, my reds have always remained borderline healthy. Until now. I was still able to get treatment but they sent me in for a blood transfusion as soon as the infusion center could get me in. I didn't know what  to expect. In fact I didn't even know they let me keep my old blood. I thought they swapped it all out. Thankfully they do not, they just add a few pints to your existing blood. In my case they only added red blood cells. Not iron, or platelets or anything fancy, just red blood cells. I needed 2 bags and they said to plan on staying there for 2 hours per bag. I packed a backpack full of books, notebooks for list making and doodeling, and apple gadgets with accessories to get me though 4 hours of just sitting. The first thing they did when I got there was give me a Benadryl, negating all of my packing and any need to do anything that requires opening my eyes and thinking at the same time. I don't remember much. My dad took me and stayed with me most of the time, and Tony stopped by when he got out of work. I know my dad left for a walk, or at least he claims to have taken a walk, I don't recall him being anywhere expect for the chair next to my bed. When it was over, (in only 3 hours!) one of the nurses fixed my port! For the past month or so my port has only been working one way. Thankfully it was taking fluids but it would not draw (give) fluids, i.e. blood. So every visit to the cancer center lately has been a chemo push in my port and a blood draw from my arm. They have to draw a lot and often, which is why I got the port in the first place. My chemo nurse spent so much time trying to fix it and pushing fluids to de-clog whatever was stuck in it. When I checked in today they said they would fix it before I left, I tried to not get my hopes up just in case, but she was able to fix it!! I love it!!! When she was done she mentioned I got my color back, she wasn't joking! I didn't realize how pale I had been looking. When I went to look in the mirror, my foundation looked like a white clown face! My entire body is warm and pink again! I didn't realize how bad it was until they fixed it! I hope I won't have to do transfusions often, but at least I had a positive experience and if I do need more, I know to where better clothes for it, I wore jeans in my bed today :) I also know that I will be sleeping the majority of the time so there is no need for iPads, headphones, a list of youtube videos, 2 books and a notebook.
If you donate blood and don't already have someone you donate for, please consider donating in my name, Janice Bardone. I only used 2 pints today, but I know there may be a need for more in the future. And if I end up not needing it someone else will! Thank you!
And now I am going back to bed to enjoy the last remaining effects of the Benadryl.