Update on back, hernia surgery and general how I am feeling

Thank you so very much. I went Monday to get an epidural shot for my back pain (I get them about every five months or so I guess) They usually don't hurt but this time it felt like the pain management Dr. put an ice pick in my back, broke it off and left it in there, that was Monday night, yesterday a bit better, today a bit better still but a little "achy" which will go away and then no more spasms in my back so YEAH!


My Surgeon called me Monday evening and we went over everything I was worried about over the phone. She said she still cannot tell me for sure but she is going to try the hernia repair laparoscopically, she wanted me to make sure I knew that she might get in there and find she has to open me up and I told her I understand. Regarding my throwing up after general anaesthetic she said she works with a great team of anesthesiologists and they have some killer anti nausea stuff, way better and more advanced than the ones I had back in 2008, so we are going to wait and see about the tube down the throat for vomiting until it becomes an issue. She can give me both the epidural and the pain drains so we are going with both (YEAH again) to keep my pain as under control as possible, she does not think drainage tubes will be an issue but before I go home myself and Tom will be thoroughly "trained" on how to deal with them as with the pain tubes. So September 10th is the day and she thinks a one night stay should do the trick although as will all things medical she put the disclaimer "unless there are complications" (grins) I like her.

I am feeling like I have never had chemotherapy. I have no fatigue, okay maybe a little here and there but it could be the hernia (I am telling everyone I am having my alien baby on September 10th, then have to explain it to them he he he), no diarrhea, no nausea, no chills, fevers, no throwing up, no general aches and pains, no eyes hurting when I cry because the chemo comes out in my tears, no neuropathy at all. Except for my back (which the ache should end tomorrow) and the hernia (which for the past three days has stayed pain free) and the ankle (darn arthritis set in) I feel pretty good.

While I was checking in for my epidural for my back pain, Tom went down to my Oncologist's office to get a refill of my beta blocker and find out my CEA. He ran into Kristin, (my Oncologist's PA) and they talked for a bit. She told him the clinical trial my Oncologist would like me to take part in is not the same one that was closed by the FDA but from the same company and actually closer to me. She recommends it and I value her advice so when I heal from the hernia surgery I will contact my Oncologist, He wants to get PET scan and other things at that time (end of September/beginning of October) and then I guess we see if I am eligible for the clinical trial and if feasible I start it. (Oh no CEA level available yet, Kristin is worried they did not do it or lost it so she is going to raise hedoublehockeysticks to see if she can find it and call me with it.)


So things are good with me and Tom, it has finally become hot here in Northern San Diego county so I am inside most of the time with the A/C on as I cannot take the heat. I still don't leave the house often but that is no longer because of the chemotherapy, it's mostly the heat, the hernia and I just don't feel like going anywhere unless I have to.

So that's my update and I am leaning on God as He has seen me through much in my life and will see me through this, when the time comes He will be there with open arms saying "Welcome Home" and all my fear will be gone, because I think the end is two fold hard on us. 1. Leaving loved ones and friends behind and 2. Having to go forward alone with faith but with some fear because we walk that path at the end alone except for God who awaits us.

So anyways I am getting way beyond myself, I am not going to beat this but I sure am going to live and love my life until God says "It is time" and I have the best man I could have ever prayed for by my side, Tom.

And the bestest group of people to help in anyway needed here, you all. Thank you.

Hernia my main concern right now

I am hoping I don't have to go to the ER before the 10th. My hernia has really lumped up and no amount of massaging (well as much as I can stand without screaming) will make it go down again. I also am having what seems to be muscle spasms right above the hernia but below my lungs all the way around (front, sides and back) and pain in both shoulders and chest. and nausea. All bad signs when you have a hernia. I have been taking vicodin almost on a constant one pill per four hours. I don't think I have a fever but don't know as we still have not replaced the thermometer that got broken. I am just trying to make it until September 10th.


I don't think I am going to do any clinical trial my Oncologist refers me to as we caught him in another lie, saying that the one he wants me to start after I head from surgery is not the same one put on clinical hold by the FDA. (BTW FDA clinical hold means that the FDA went in and did an audit and found a reason to stop the clinical trial for an indeterminate amount of time or stop it all together). Right now the cancer is not even in my mind as I go in Monday to get an epidural shot for my back pain then Sep 10th I go in for surgery for the hernia. AFTER I heal from the hernia and we get a PET scan then I will see where we stand and what might my options be or what I might want to do but I still have nightmares about the chemotherapy and do not want anything to do with it again.

I hope all are well and happy and I keep each and every one of you in my thoughts and prayers.

I wish

I wish I had never found out I had cancer, I would give anything to not know and to just be oblivious to it until the end.

I wish I had never started chemotherapy.  I don't think it has appreciably added any time to my time here on earth and I have gone through really bad times.

I wish I had been a better daughter to my adoptive parents and that they were still alive and that I had family and friends around me in my times of need.

I wish I had a car and could still drive so I could take myself to the ER when needed.  I need to go but because I put everyone else in front of me, I told my Oncologist when I called him this morning because I have been in pain for about 24 hours now that I could not go to the ER because Tom had to go to work.

I wish I knew where this pain is coming from and that it would stop.  It is like a band around upper abdomen, sides and back and feels like the muscles are spasming and now it is starting to hurt when I breathe like before.  I hurt and yet there is nothing Tom can do for me and I am helpless to do for myself except take Vicodin all day and night.

I wish ............  a lot of things.

Oncologists Visit

So I went in yesterday for a two week follow up and instead of seeing my Oncologists PA guess who I saw? Yes my Oncologist (dang it)

So went in and had my blood drawn (through my arm again) then got weight, temp and BP taken and waited about 15 minutes for the Onocologist.

We actually spoke and I am not kidding you for .... FIVE MINUTES.

I gave him my paperwork for my hernia surgery, he glanced at it, gave it back and said;

"Well the clinical trial is willing to take you on even though you reported them to the FDA, they've passed and are going to start doing treatments so once you get done with the surgery and are recovering contact me and we will start to get you in to get treatments and they will waive the $15,000 fee."

I was so stunned I said "Ah huh"

He then said "The only side effects are fevers and night sweats".

Then he hustled us out of there.

First. I did NOT report this place http://www.immunocare.net to the FDA, I "called" the FDA and asked about the clinical trials and them wanting $15,000 up front.

Second, I checked the website of the clinical trial, it's an Immunovative treatment, not a chemotherapy and since there was no phone number on their website I called one of the related links http://www.biomedirb.com/ which happens to oversee the clinical trial for the first place.

This is what I found from the woman I talked to at the second place:

Immunovative Clinical Research, Inc. (The first place) is on clinical hold by the FDA (she has no idea why) so no new patients are being accepted and indeed no patients at all are going forward through the clinical trial.

The side effects indeed are fevers, some high and night sweats.

She then gave me the actual phone number for the first place and I called and had to leave a message for someone to call me back. I am going to try to call the San Diego FDA office tomorrow to find out why they are put on clinical hold as like I said the woman from the second place could not tell me why and could not assure me that once I am done with surgery and healed that they would have certification to continue the "trials" as they are still in the trial phase and not the "treatment" phase as my Oncologist would have had me believe.

So just another day in my life. Oh Tom had his 45th birthday on Saturday but since He worked we celebrated on Sunday, I bought him about 13th presents (all T-shirt and long sleeved fleece shirts from BigDog.com as he loves their shirts) got a musical card and baked him a birthday cake (i did okay with the baking and frosting but I SUCK at writing "Happy Birthday Tom" in piped frosting LOL) He loved it all and we had a great weekend (His of Sunday and Monday) together.

I am feeling better week by week but now having weird muscle aches and have to take aleve or something and use the hot pad, I wonder if it's just arthritis but it hurts!. And I can't wait till September 10th to have this alien baby (my hernia) fixed LOL. I am serious it looks weird, imagine a pudgy stomach with one side lumped up to what a full stomach would look like with a eight month pregnancy and since part of my colon goes through the hernia? OMG, I jumped when it felt like what would be a baby kicking but was gas going through that exact spot of my colon.  Sick jokes from Tom all the way around.

So will know my CEA levels probably late next week and I am about two 1/2 weeks away from hernia surgery.

(((((((((((((((hugs))))))))))))) to all.

To my wonderful Tom

HAPPY BIRTHDAY

Thank you for all the wonderful things you have brought into my life, the most wonderful being

YOU!

Happy Birthday my last and greatest love and may you have many many more.

And for something cute and funny

We live in an area with a beautiful view, and lots of birds and squirrels.  We feed the birds and the squirrels and Tom went and bought two wrist rockets (sling shots) that we use to sling peanuts out to the bush near enough to us to view the squirrels but not near enough for us to just throw peanuts from the balcony.  (No animals or birds are harmed in this process)

Seems a few blue jays like peanuts and as fast as we shoot them out on the lawn the blue jays appear and pick them up and fly off with them.  It is fast becoming a running war with Tom and the blue jays.  He will shoot one peanut and immediately take up another and wait for a blue jay to make a run at the one he shot, he will then shoot the one he has in the slingshot near to the blue jay or over the blue jay's head to either make it drop the peanut it has or at least squawk at him as it flies away.

As we sit on the balcony and drink coffee and read the newspaper together it is always sure to bring a smile to my face when I see the first blue jay appear and I will now run to get a wrist rocket and the peanuts and egg Tom on (grins)

Just a little upbeat something for a smile :)

Recent CEA Level

Most recent CEA Level: 08/02/10: 163.7 down from 07/19/10: 176.6

Also my headache has gone away although other joint aches and pains and mild diarrhea continue to hang around.