This is going to be the hardest blog ever to write. We have been delivered a severe blow and continue to real from it the evening. I am assuming the fact that the kids are here, that is why we can hold it together at this point.
My sister and I went to see Dr. Kortz. The news was not good. At this point the tumors are growing fingers with in the portal vein and hepatic artery....especially on the exit end. This renders the possibility of a surgery null and void. It will never happen. Interesting how Dr. Kortz kept saying that there are so many other great cards to play. I conveniently reminded him he was the Ace.
We are very, very scared at this point. Relying on God and each other to stay strong. Kortz recommended going back to Sir Spheres along with chemotherapy. I am afraid Nutting won't touch me with a ten foot pole after the burn episode. I hope I am wrong.
I am now very worried that the lymph nodes are active cancer and I WANT THEM OUT! Not all that attached to them....really. Good news is, when I do start chemo, my fevers should go away and I will have more energy on the alternate weeks of chemo. This will give me precious time with my girls, husband and friends.
Don't worry, I have not given up yet! This is just a very tall hurdle that I plan to crawl under to get to what needs to be done.
Thursday, September 23, 2010
Wednesday, September 22, 2010
CT results.....
Wow, what a day! I woke up early to snuggle with my seven year old while my ten year old was in the shower. I love moments like that! There is nothing better than her sweet little sleepy face so close to mine.
Ok, so for the good news. I went to the wound doctor yesterday (actually the wound nurse since the doctor tried to cancel) and had my wound repacked. It has healed soooooo very much! I am so impressed in the change of the wound! In one week it went from half inch deep and dime size to 3mm deep and pen size. Yay for me!!!!
The other good news is my tumors have not changed at all from the last CT. They believe they are going to remain inflamed for a while. Unfortunately, there are two lymph nodes that are inflamed as well. Is it cancer? Not sure yet. CEA results are in tomorrow. It is a huge possibility that they are inflamed from necrotic tissue or a stewing infection that we just don't know about. I will be seeing and infectious disease doctor on Friday just to make sure. It is now official......a doctors appointment every day this week. Yay for me!!
I get to see Dr. Jotte for a follow up next Friday....told him I just couldn't wait to see his bright shiny face so soon. Lucky me! He called me a liar. Hmmm.
Ok, so for the good news. I went to the wound doctor yesterday (actually the wound nurse since the doctor tried to cancel) and had my wound repacked. It has healed soooooo very much! I am so impressed in the change of the wound! In one week it went from half inch deep and dime size to 3mm deep and pen size. Yay for me!!!!
The other good news is my tumors have not changed at all from the last CT. They believe they are going to remain inflamed for a while. Unfortunately, there are two lymph nodes that are inflamed as well. Is it cancer? Not sure yet. CEA results are in tomorrow. It is a huge possibility that they are inflamed from necrotic tissue or a stewing infection that we just don't know about. I will be seeing and infectious disease doctor on Friday just to make sure. It is now official......a doctors appointment every day this week. Yay for me!!
I get to see Dr. Jotte for a follow up next Friday....told him I just couldn't wait to see his bright shiny face so soon. Lucky me! He called me a liar. Hmmm.
Tuesday, September 21, 2010
very tired.....
I am so very tired since I returned from the hospital. Not really sure what that is about. I could seriously sleep the day away if I didn't have other things that I have to get done. The pain is still there but is becoming more tolerable with less medication.
I have so much going on this week. Yesterday, I went in for a CT. Today I am going to the wound clinic to have my wound re-packed. Not really looking forward to that one. Tomorrow I meet with Dr. Jotte to go over the CT. A lot of emotions are going along with this one. I am so scared that I am going to receive bad news. Can't seem to stop thinking about it today. What if this burn damaged too much of the left lobe that they can't take out the right? I need some heavy duty praying from all of you. For healing and peace. I see the surgeon on Thursday. Not sure what he is going to say. I am also running temperatures again. Maybe this is why I feel like the life is being sucked out of me? They say the temperatures are from the necrotic tissues around my tumors. I don't know how much of that I believe.
On an up note, I am going to women of faith this weekend. I can't wait! Spending the whole weekend praising and worshiping, what more can I ask for?
I have so much going on this week. Yesterday, I went in for a CT. Today I am going to the wound clinic to have my wound re-packed. Not really looking forward to that one. Tomorrow I meet with Dr. Jotte to go over the CT. A lot of emotions are going along with this one. I am so scared that I am going to receive bad news. Can't seem to stop thinking about it today. What if this burn damaged too much of the left lobe that they can't take out the right? I need some heavy duty praying from all of you. For healing and peace. I see the surgeon on Thursday. Not sure what he is going to say. I am also running temperatures again. Maybe this is why I feel like the life is being sucked out of me? They say the temperatures are from the necrotic tissues around my tumors. I don't know how much of that I believe.
On an up note, I am going to women of faith this weekend. I can't wait! Spending the whole weekend praising and worshiping, what more can I ask for?
Saturday, September 11, 2010
Hell week....
This was officially a week from hell. It started out with my burn wound going down hill....quickly to being hospitalized for pain control. Monday I called my doctor to get the ball rolling on the burn. Within just a few days it went from being covered by a healthy scab to puss, slough and possible tunneling. Later on Monday I opened a bottle of nail polish and felt a distinct POP in my left upper quadrant. This is the same area I had pain after the ablation. At that time it was blamed on a hematoma on my liver. When I went to bed that night, that exact pain returned with a vengeance. I was able to get it to chill out with a couple of percocet, unfortunately to wake at 1:15am with the same pain....only intensified. By 2:00am I couldn't take it anymore so I woke my husband to take me to the ER. I was in histerics.
I spent the rest of the night in the S.W Swedish ER only to be discharged in the morning with 10/10 pain, nausea and vomiting. Unfortunately (yet fortunately) my CT didn't show anything, therefore there was no reason for me to be in pain. From that point I was treated as a drug seeker and a nuisance. Did they not hear my history? Did they not hear my husband specifically say he has never seen me like this even through all the crud that I have been through? When they shoved dilaudid (still in the package) into my husbands hand and told us how to show ourselves out, I vowed I would never use that ER again....ever.
That afternoon I went to Sky Ridge to have my wound and pain re-evaluated. I was ultimately admitted for pain management and wound care. The wound doctor scooped out all the fibroid tissue and puss. Then he cut away at the old dead tissue and slough, finishing up with scooping away the bottom of the wound with what I call a miniature ice cream scooper. That was really gross. It hurt pretty bad too....but it was really, really gross! We are now packing the wound. On Thursday my pain was to a point I could handle at home. The wound nurse came to re stuff the wound (which unfortunately developed new slough in just a few days) and sent me home.
I am still hurting but I am truly focused on healing and very glad to be in my own home and bed. I have decided I need to heal, get that crazy surgery, heal from that and go roller blading! Can't wait!
I spent the rest of the night in the S.W Swedish ER only to be discharged in the morning with 10/10 pain, nausea and vomiting. Unfortunately (yet fortunately) my CT didn't show anything, therefore there was no reason for me to be in pain. From that point I was treated as a drug seeker and a nuisance. Did they not hear my history? Did they not hear my husband specifically say he has never seen me like this even through all the crud that I have been through? When they shoved dilaudid (still in the package) into my husbands hand and told us how to show ourselves out, I vowed I would never use that ER again....ever.
That afternoon I went to Sky Ridge to have my wound and pain re-evaluated. I was ultimately admitted for pain management and wound care. The wound doctor scooped out all the fibroid tissue and puss. Then he cut away at the old dead tissue and slough, finishing up with scooping away the bottom of the wound with what I call a miniature ice cream scooper. That was really gross. It hurt pretty bad too....but it was really, really gross! We are now packing the wound. On Thursday my pain was to a point I could handle at home. The wound nurse came to re stuff the wound (which unfortunately developed new slough in just a few days) and sent me home.
I am still hurting but I am truly focused on healing and very glad to be in my own home and bed. I have decided I need to heal, get that crazy surgery, heal from that and go roller blading! Can't wait!
Sunday, September 5, 2010
Chemo 101
Ok fellow blog followers! I need your help today and everyday till the end of September. The Pepsi challenge is underway for new ideas. This is where people submit new ideas, the public vote for there favorite and then they receive 250,000 dollars toward their idea to make it happen.
Chemo 101 is a web site being developed by a woman, KG is what I know her by, that will be designed to help newly diagnosed cancer patients. This web site will help them understand treatment options, obtain financial assistance if needed, and find a support group with in their area. I wish I had this available to me when I was newly diagnosed!
You can go to Chemo101.com and vote up to 3 times a day till the end of September. Please. This is so important to me. It will be so beneficial to so many people effected by this crummy disease.
In the mean time, I am just trying to stay focused on what needs to be done to get healthy. My hands and feet hurt tremendously and my burn seems to be taking FOREVER to heal. This is not preventing me from doing my prescribed walking. I am up to 3 miles a day! This does not help my feet at all but it sure does lift my spirit! I plan on calling my oncologist on Tuesday and getting started on Neurontin at least for the night time. Falling asleep and staying asleep is becoming impossible. So, if I seem forgetful or loopy......it's the neurontin. Just remember it's temporary!
Chemo 101 is a web site being developed by a woman, KG is what I know her by, that will be designed to help newly diagnosed cancer patients. This web site will help them understand treatment options, obtain financial assistance if needed, and find a support group with in their area. I wish I had this available to me when I was newly diagnosed!
You can go to Chemo101.com and vote up to 3 times a day till the end of September. Please. This is so important to me. It will be so beneficial to so many people effected by this crummy disease.
In the mean time, I am just trying to stay focused on what needs to be done to get healthy. My hands and feet hurt tremendously and my burn seems to be taking FOREVER to heal. This is not preventing me from doing my prescribed walking. I am up to 3 miles a day! This does not help my feet at all but it sure does lift my spirit! I plan on calling my oncologist on Tuesday and getting started on Neurontin at least for the night time. Falling asleep and staying asleep is becoming impossible. So, if I seem forgetful or loopy......it's the neurontin. Just remember it's temporary!
Thursday, September 2, 2010
met with Dr. Kortz
I met with Dr. Kortz today and he said he was not sharpening any knives yet. I told him I will now forever picture him in the OR sharpening knives with Mozart as background music! What a kook! Unfortunately, I didn't bring my CT scan cd with me, assuming that he should be able to retrieve it. It was done at a sister hospital for crying out loud! Apparently they use different servers for imaging results. Grrrr! Did HCA consult with me on this? NOOOO! Use the same server you big dummies! So I went home after our meeting, retrieved my cd and ran it back to him. He will view it today and call me tomorrow.
In the mean time, regardless of what the CT says, he wants to wait four weeks for another round of CEA's and another triple phase CT for comparison. Never mind the fact that we both agree my body needs more time to heal. I am at peace with this. Thanks for the prayers!
I would like to enlist a specific prayer from all my warriors. The neuropathy in my feet and hands is worsening and really making simple things miserable. I drop everything because of the numbness in my fingers yet it hurts to type (hence the blogging stall), and grocery shopping is a nightmare because of the cold. My feet hurt so bad by the time i go to bed, I can hardly fall asleep and I wake because of stabbing pain through my toes and the top of my feet. I am trying not to wine, but it has become such a focus of everything I do and there is only so much pain a person can take! Please pray for ease of this pain. Love you all!
In the mean time, regardless of what the CT says, he wants to wait four weeks for another round of CEA's and another triple phase CT for comparison. Never mind the fact that we both agree my body needs more time to heal. I am at peace with this. Thanks for the prayers!
I would like to enlist a specific prayer from all my warriors. The neuropathy in my feet and hands is worsening and really making simple things miserable. I drop everything because of the numbness in my fingers yet it hurts to type (hence the blogging stall), and grocery shopping is a nightmare because of the cold. My feet hurt so bad by the time i go to bed, I can hardly fall asleep and I wake because of stabbing pain through my toes and the top of my feet. I am trying not to wine, but it has become such a focus of everything I do and there is only so much pain a person can take! Please pray for ease of this pain. Love you all!
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