You're going to have to deal with a substitute blogger for today. Laurie would love to be writing this herself, but she's busy resting and trying to get healthy enough to escape from the hospital. I'll get to that later in the post....
The TACE procedure went smoothly. They ran behind schedule due to an emergency earlier in the day, so we were about an hour or so delayed. Laurie got changed and some of you have seen her stylish display of the gown on FB. Eventually a nurse came and took Laurie away to get her ready for the procedure. I headed off to get snack and to drop off her things at the car. Much to my surprise I ended up joining Dr. Komlos and his PA on the way down. I just happened to get in while they were going down to grab a bite before they were called in to perform the procedure. I grabbed Laurie's overnight bag and pillow and settled into the waiting room.
Some 90 minutes or so later Dr. Komlos came back and said the procedure was successfully completed and she would be taken up to her room in the next 30 minutes or so. He also was somewhat apologetic in saying that Laurie was going to be in some discomfort and they would keep her here possibly a second night if the pain wasn't being managed. He also said once she was home that a few days after the procedure she'd start to get fairly fatigued from the chemo that was inserted. I could tell by what he was saying that this was going to be tougher than what we originally believed. What I'd heard from my GP was that it was really painful and now I was starting to believe that it was going to be more towards that spectrum than we expected. Laurie's a trooper, but she does have her limits.
Eventually, someone came by to get me and direct me to Laurie's room (they forgot to pick me up on the way). When I got to Laurie's room she was in a lot of discomfort. Her stomach felt like it was cramping and it was extremely painful. They'd given her a dose of dilaudid before bringing her up, but it didn't seem to be doing enough. They ordered a PCA pump, but it wasn't there yet. Laurie seemed to be fading in and out and I believe it was because of the pain. Eventually I went hunting for the nurse. While at the nurses station I also saw Dr. Dormady. About the time I chatted with him the nurse showed up with the pump in hand. Dr. D said he'd come by later to check on things.
The pain pump with PCA was setup, but things didn't seem to get better. I talked to the nurse about it, but I didn't get anywhere with increasing the medication. After about 45 minutes, Dr D showed up and when he saw the pain level and medication rate he had them change the PCA amount 4x. Sure enough, within an hour Laurie was feeling better and was actually more aware of things. She began talking and asking me to read her the FB messages/posts (she just couldn't read well on her own). We really like Dr D and so much appreciate his activism in managing Laurie's care.
Around 9:30 she seemed to be resting well, so I headed home.
This morning I arrived around 9:15 (can you say an hour commute for what took 15 mins last night?). She seems to be pain free and the pain pump is currently off (we're hoping to start the pill form soon). Laurie's not able to keep anything down, so she'll be here until she's mobile and can keep food down. Hopefully that will be later today, but we'll see. They're giving her stuff to help with the nausea. Most of the nausea is the side effect of the pain medication, so by reducing the pain medication we should also be moving towards stability. Dr Komlos' PA dropped by and checked on Laurie while I was here. Dr. D was by just before I got here. So they are keeping an eye on Laurie and she's being well cared for.
That's about it for now. I want to thank everyone that has been sending her wishes via FB, email and thought. It helps us both to know we have such a supportive community around us.
As a side note, I know the dogs are puzzled by us not being around. Theo watched the door last night after I came in, I suspect he was waiting for Laurie to come through. Both dogs hung out with me all night and were never very far away. They'll be very happy when their mommy is home.....
Thursday, April 25, 2013
Monday, April 22, 2013
MRI, CEA, and TACE status
MRI
On April 10th I had an MRI to verify the findings from the CT scan and also to check to see if there was any additional activity that the CT scan missed. It did not find anything other than the little tumor that was found previously. The copy that was faxed to me is poor quality but I here it is anyway. I think you can still read it. If you hold down your "CTRL" key and scroll the mouse you can make it larger, but it will still be a little fuzzy. Sorry, that's how it came to me on the fax.
TACE
I have been trying since the middle of last week to find out if the TACE procedure has made it through the pre-authorization process at Cigna. Last Wednesday they said it would be completed on Friday. On Friday they said it wasn't finished yet. Today they told me it's been escalated but should be completed within 24 hours. They are supposed to finalize these within 5 business days but are now beyond that. So, at this point I still don't know if I will have the procedure this Wednesday or not. Hopefully I will know by tomorrow.
[TACE UPDATE]
I just got word that the authorization and been finalized and the procedure has been approved. Therefore I will go to the hospital on Wednesday for this procedure and will have one overnight stay.
CEA
My CEA from last Friday is 14.3, down just a smidgen from the previous reading which was 14.6. That's actually good since it's been 4 weeks since my last chemo infusion.
Thursday, April 11, 2013
What Keeps Me Going
I posted this to someone in a message on Facebook, then I thought that everyone else would appreciate this...
From the many, many comments I get from people, I see that people see me following this path with a great positive attitude, courage, grace, etc. But the truth is, I wouldn't know any other way. It's just the way I live life. Part of it may stem from my early years. Many people don't know this, but as a child I suffered much abuse from my step-mother. I left home at 17, I was a junior in high school. I made my way by working and paying rent while keeping my straight-A status. I just focused on the positive parts of life and did what I had to do to get through the struggles. Anyway, though all of this, I had a vision in my mind of what I'd like my life to be like. When I met and married David, I finally achieved that vision. Then 2 1/2 years after we got married I was diagnosed with colon cancer. I am so unwilling to give up what I struggled so long to attain: The life that I have. I appreciate it so much that I strive to live in that vision any moment that I can. So, when I'm tired I take a break and do what I have to do, but as soon as I can bounce back up into the life that I have, I do. I want as much of it that I can absorb. That keeps me going.
Our Visit with Dr. Komlos
Today David and I had our consultation with Dr. Komlos, the Interventional Radiologist who will perform my TACE procedure. Dr. Dormady really holds Dr. Komlos in the highest regard. And as a side note, I'm lucky to have Dr. Dormady on my side. Dr. Komlos was on vacation last week until today. While he was away I called to schedule my appointment with him and was told that he was booked for two weeks. So, I scheduled for April 23rd and let Dr. Dormady know. Behind the scenes, Dr. Dormady called Dr. Komlos and the next thing I know I got a phone call saying that Dr. Komlos called and said for them to move me to April 11th. What an awesome team of doctors.
Dr. Komlos described the procedure to me, most of which I already knew since I looked it up online. He said that I have two options at this point: the chemoembolization which is the procedure I have described in a previous post. A catheter will be inserted in my femoral artery and will be threaded up to my liver and then Irinotecan-saturated beads will be inserted into my liver which will then emit chemotherapy into my liver for two weeks. There's another very similar procedure that could be done, but instead of chemotherapy-saturated beads, the beads would emit radiation. But he thinks that in my case (where only one lesion is present) the chemoembolization is the better choice so that we can save additional radiation procedures for later when it may be needed more.
The procedure will be a 30-minute procedure done while sedated. I will stay in the hospital overnight for observation and to make sure any pain is controlled. He said I would then be fatigued and have a decreased appetite for 2-3 weeks. I can handle that.
Dr. Komlos said he doesn't think this procedure will completely get rid of the current lesion that I have and that I may need to CyberKnife it at a later date. The purpose of this procedure is to knock down additional tumor cells that are trying to rally, preventing lesions that are not present now but would be in the future. That will allow us to then focus on this one that is present without having additional ones pop up right afterwards.
The procedure is scheduled for Wednesday April 24th, and will proceed as long as the insurance authorization does not get in the way. So far the insurance has been mostly cooperative, so hopefully they will continue to be so.
I was hoping that I would have the MRI report from yesterday but it isn't completed yet. When I have that I will post it.
Dr. Komlos described the procedure to me, most of which I already knew since I looked it up online. He said that I have two options at this point: the chemoembolization which is the procedure I have described in a previous post. A catheter will be inserted in my femoral artery and will be threaded up to my liver and then Irinotecan-saturated beads will be inserted into my liver which will then emit chemotherapy into my liver for two weeks. There's another very similar procedure that could be done, but instead of chemotherapy-saturated beads, the beads would emit radiation. But he thinks that in my case (where only one lesion is present) the chemoembolization is the better choice so that we can save additional radiation procedures for later when it may be needed more.
The procedure will be a 30-minute procedure done while sedated. I will stay in the hospital overnight for observation and to make sure any pain is controlled. He said I would then be fatigued and have a decreased appetite for 2-3 weeks. I can handle that.
Dr. Komlos said he doesn't think this procedure will completely get rid of the current lesion that I have and that I may need to CyberKnife it at a later date. The purpose of this procedure is to knock down additional tumor cells that are trying to rally, preventing lesions that are not present now but would be in the future. That will allow us to then focus on this one that is present without having additional ones pop up right afterwards.
The procedure is scheduled for Wednesday April 24th, and will proceed as long as the insurance authorization does not get in the way. So far the insurance has been mostly cooperative, so hopefully they will continue to be so.
I was hoping that I would have the MRI report from yesterday but it isn't completed yet. When I have that I will post it.
Friday, April 5, 2013
TACE (Transarterial Chemo Embolization)
Here's the update I promised today on Facebook. First of all, the CEA from yesterday is 14.6, down from 16.7 two weeks ago. So, that does show that the 4 rounds of chemotherapy has been doing its job. But the side effects have been building up and I'd like to give my body (and my psyche) and break from the systemic treatment. I've been on some form of chemotherapy since July 2011. Most of that time I was taking Xeloda and Avastin which have caused some side effects that aren't pleasant. The Avastin has caused ulcerations inside my nose which are painful and cause nosebleeds. The xeloda has taken its toll on my gums. The chemotherapy I've been on for the past two months have increased these effects plus have cause discomfort with my hands and feet as described in a recent post.
We are not by any means giving up on this battle though, we are just changing the strategy. While I am taking a break I will undergo a procedure called TACE which stands for "Transarterial Chemo Embolization" Here is a link that describes this procedure: TACE. Basically an Interventional Radiologist will insert a catheter through a femoral artery and place Irinotecan-saturated beads into my liver, which will supply a dose of the chemotherapy directly to the tumor for two weeks. This should kill it. Also the liver will be saturated with the beads as well so if there are any micro-tumors (too small to detect) that are gearing up for battle, the TACE will also take care of them.
After this (probably in a couple of months) we will likely continue the systemic treatments to make sure and kill (hopefully) any additional tumor cells that are elsewhere in my body.
I don't have the details on when this procedure will take place, I would guess within the next couple of weeks. I will have an MRI before then to double check and see if there are any additional sites in the liver that have activity. Any tumor sites that are found will get a direct hit of these beads.
Here is the CT scan report:
We are not by any means giving up on this battle though, we are just changing the strategy. While I am taking a break I will undergo a procedure called TACE which stands for "Transarterial Chemo Embolization" Here is a link that describes this procedure: TACE. Basically an Interventional Radiologist will insert a catheter through a femoral artery and place Irinotecan-saturated beads into my liver, which will supply a dose of the chemotherapy directly to the tumor for two weeks. This should kill it. Also the liver will be saturated with the beads as well so if there are any micro-tumors (too small to detect) that are gearing up for battle, the TACE will also take care of them.
After this (probably in a couple of months) we will likely continue the systemic treatments to make sure and kill (hopefully) any additional tumor cells that are elsewhere in my body.
I don't have the details on when this procedure will take place, I would guess within the next couple of weeks. I will have an MRI before then to double check and see if there are any additional sites in the liver that have activity. Any tumor sites that are found will get a direct hit of these beads.
Here is the CT scan report:
Monday, April 1, 2013
My Husband
I wanted to take a few moments to write about my husband, David. Anyone who knows him will already know everything that I have to say, but I want to say it anyway. When we got married 7 1/2 years ago, he believed we'd get married, build a house big enough to raise two kids, and live a long, happy life together. Well, we got married, built the house, and then instead of the planned path, he has taken on the job of caring for and supporting me through this sometimes difficult journey that we are on. And it is touching that he can do it so well considering that he also lost his mother to cancer when he was in high school. This disease of mine has been been more unfair to him than to me in some ways.
Despite having to take on a burden that he didn't expect, he has taken it on in stellar fashion. I try not to make things too hard on him, but when needed, he has shouldered "my" tasks as well as his own. He is still working, but luckily he is able to work from home often. So, in addition to his regular job, he is now preparing food and drinks for me on treatment weeks, fetching drugs, feeding the dogs, walking the dogs on his own, going to the store, sometimes more than once a day, to get whatever my shifting whims have dictated. While undergoing treatment, I take nourishment and calories in whatever form I can, and what I can eat/drink/tolerate seems to change a bit each time. And David is right on top of it all. He is even doing "my" garden tasks when asked. :-)
He is doing an amazing job without any complaints. According to the doctors, there's little chance of a cure for me, but we keep fighting each battle to try, and to at least give me long periods of peace and good health. Since David didn't sign up for a life with a wife with cancer, who cannot work outside the home, and who sometimes needs a lot of help, my goal is to give him as many breaks as I can by earning periods of remission that are as long as possible.
I love David very much, and I couldn't have asked for a better partner though this.
Despite having to take on a burden that he didn't expect, he has taken it on in stellar fashion. I try not to make things too hard on him, but when needed, he has shouldered "my" tasks as well as his own. He is still working, but luckily he is able to work from home often. So, in addition to his regular job, he is now preparing food and drinks for me on treatment weeks, fetching drugs, feeding the dogs, walking the dogs on his own, going to the store, sometimes more than once a day, to get whatever my shifting whims have dictated. While undergoing treatment, I take nourishment and calories in whatever form I can, and what I can eat/drink/tolerate seems to change a bit each time. And David is right on top of it all. He is even doing "my" garden tasks when asked. :-)
He is doing an amazing job without any complaints. According to the doctors, there's little chance of a cure for me, but we keep fighting each battle to try, and to at least give me long periods of peace and good health. Since David didn't sign up for a life with a wife with cancer, who cannot work outside the home, and who sometimes needs a lot of help, my goal is to give him as many breaks as I can by earning periods of remission that are as long as possible.
I love David very much, and I couldn't have asked for a better partner though this.
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