Post Surgery

My post surgical visit with Dr. B, Dr. Wang and Dr. T went well. Dr. B was pleased with the surgery and I was released with the understanding I would take it easy until March. Dr. B gave us a surgical report. It was hard to read. I put it down once after they kept referring to tami as the "gigantic" tumor. I put it down a second time after reading the word "resuscitate". I think I finally read it through before my next trip to Kenner in late March. Dr. B or Dr. Wang found the primary tumor in my small intestine. The surgery was considered a success not only because i survived but because he removed quite a bit of tumor. The rest he fried. He prescribed scans for early March and a three month post surgery visit to Kenner to see what really happened after the dust settles.

Christmas and New Year were a blur. January and February were just Mozie and I walking, napping and watching movies most of the day. I had no desire for communicating (that's why you are getting the bulk of these posts all at once). This was probably depression which is normal after a big surgery. I don't think I ever imagined being so tired and weak, but every day I felt a little better. I made it back to work a couple of days before March.

So, I did finally make it out of the ICU "hole". When I got out of the hole, there was a hill to climb. Which I thought was funny. But I climbed it. I could not have done it by myself though. Thanks for your support.

Margaret = Greta

While I was in ICU, my friend Greta came to visit. She was visiting her Mom in Baton Rouge and drove over for the day. I think it was Saturday. I'm really foggy about some of these details so bear with me.

On day 3, The Dr. decided it was time to take me off the automatic pain killer. Really? No, really. The nurse thought I should use as much of it as I could before it was removed. She knew I was still pretty uncomfortable. The nurse was Nurse C, who was much more strict and in control than the previous nurse. At first it seemed Nurse C was crabby, but she wasn't. She was trying to stay on top of what I needed. It was time for me to sit up and move to the chair so I hit the pain button again. About that time "Margaret" came to the door. My back was to the door. I couldn't see her and everything was pain killer foggy. As far as I knew, I wasn't sure who "Margaret" was. Nurse got me in the chair after 30 minutes of trying to figure out my tubes and drains and unhooking me from certain things so I could sit down. Sharon came in and said, "Jan, Greta is here to see you." She asked Nurse if they could visit. Nurse gave them the stink eye, but let them in. I forgot I nicknamed my friend of almost 20 years "Greta". Short for Margaret. Sheesh, that damn morphine.

I was very foggy when they were in the room. I could see Greta and Sharon's mouths moving, but they forgot to turn the volume up. I didn't think they were talking to me. Maybe they are talking to each other? Greta is certified to practice Reiki. She was doing some Reiki with me to help with my healing. I kept seeing Nurse C walk by suspiciously giving stink eye. Time passed. I remember thinking Greta had on great earrings. Sharon looked tired. Their mouths kept moving. Goodness what were they saying? Surely they aren't still trying to talk to me. I needed to hold Greta's hand for awhile. I thought if I held her hand it would help me not be so afraid and maybe she could help pull me out of the hole I seemed to be in. For me, the six days in ICU was like being in a hole. A really deep hole I needed to climb out of. Everyone was cheering me on and telling me I could do it, but it was such a deep, dark hole. I did finally get out of it. Thanks you God.

Greta came by later that day. I remember that visit better. I was back in bed and I believe she did a bit more Reiki on me and I kept feeling better. I'm very thankful for Greta and her gifts and love, love, love. And not taking it personally that I forgot her real name for just a second. She helped me get a little bit further out of the hole I was in.

The next day, Nurse C came in bright and early. She checked my vitals and did other stuff. Before she left the room she asked if she could pray for me. I said, of course. So she did. I don't know if that happens very often with nurses and patients. Maybe it does, but for all the nurses I've had, she did some serious praying with her hands on my head. And she meant it. I am very grateful for that Nurse,. She always seemed to be crabby but she really wasn't. I laughed to myself later thinking maybe Nurse C was trying to undo some of the Reiki Greta had done with me the day before. I believe both worked. And all the other prayers, notes and calls to my family. It all worked. Thank you.

smak, pow tumor

The Surgery

December 1, 2011

Surgery: Sharon Adams

The 14-hour surgery went well. Dr. Boudreaux got the primary tumor out as well as two other small tumors. He also removed 75% of the large tumor in her liver. He was not able to remove the remaining 25% because the bleeding at this point became too dangerous to risk continuing. He used microwave ablation (he zapped the remaining part of the tumor just like you would cook something in the microwave) and a chemo wash. He is hoping all of this will kill the rest of tami tumor. 
The primary tumor sends out "daughters" that grow and by getting this tumor, no more daughters will be sent out to reek havoc on Jan. Dr. B. did explain that some undetectable "daughters" may have already been sent out and we will deal with those as they pop up. They will continue to do scans to monitor tami and any tumors. 
The parts of tami that were removed were sent away to be tested so we can learn more about the cancer and to try to figure out how to successfully kill others as they come up. 

Jan will be in ICU at least until Saturday. There are many tubes and drains coming out of her. She is in pain and is experiencing the carcinoid symptom of flushing. Dr. B. and the anesthesiologist had hoped to keep her sedated most of this morning but that didn't work out. They had to back off the sedation because it made her blood pressure get too low. Also, her oxygen levels are low, but they are monitoring this and managing it. They won't let her have any water or ice chips. Jan asked if they were aware that water has oxygen in it and that giving her water might help. She has also informed us that maybe if they would take this damn tube out of her right nostril she could take in more oxygen. She has to do lung exercises and when the nurse talked to her about an incentive to do this she tried to get the nurse to give up ice chips as an incentive. I think they are all afraid of her at this point, which makes me laugh because honestly she has not reached a high enough energy level to be scary. I keep telling Jan about all the love and support coming in for her.

Post Surgery Day 2: Sharon Adams

It was definitely a more difficult day for Jan. She is very sore and was running a fever earlier but it's better now. She sat on the edge of the bed and we hope she will be able to sit in a chair for a bit tomorrow. She is exhausted and they expect her to be in ICU for another 3-5 days at least. Her oxygen levels were a little better today. Everything she is experiencing seems to be expected after going through a 14-hour surgery so we all feel good about how things are going. Thank you all for your support.

Day 3: Julie Grammier

Jan had a good night. They used a Darth Vader style oxygen mask on her last night so she was able to rest easier. She’s sitting up more today. Breathing better, no fever. She wants water really bad or ice chips. Dr. B. and Dr. T. made a deal with her for every 10 blows on the breathing machine she can have one ice chip. For those that know Jan, how well do you think that went over? Dr. B. said she is right on track, for her healing and getting better. He comes in twice a day to check on her. They are letting a family member stay with her during the day even though she is still in ICU, so that is good. Keep the prayers coming for her healing.

Day 3: Greta Nardecchia

I visited Jan today. There was a new strict nurse so Sharon and I were limited to visiting hours. Jan sat in chair for first time for a few hours. When we returned in the afternoon she was very alert and looking improved. She was in bed intently watching the LSU game because the doctor told her she would get ice chips for each detail she could recount of the game. She is taking all the ice chip incentives very seriously (working diligently at her breathing exercises). When I left at 4 they were still waiting for her digestive system to wake up, so no water or food yet. They say she'll be in ICU probably until Monday. She is uncomfortable so please keep your prayers coming.

Day 4: Sharon Adams

Jan is doing well and is on the mend. She sits in a chair for 3 hours at a time, which is exhausting but has helped her, regain her strength significantly. I'm annoyed with the nurse that won't let me hang out in the ICU with Jan, but she is nice and very good with Jan so I'm getting over it. It doesn't feel good to be out in the waiting room and not able to help much. This was definitely harder than Jan ever imagined it would be. Her oxygen levels are still good and some other things have improved that I can't even begin to describe or explain. She still can't have water and they have stopped the ice chips because they were causing her to hurl. We still don't know how long she will be in the ICU. I don't imagine they will put her in a regular room before Wednesday. Thank you for all your positive thoughts and prayers.

Day 6: Sharon Adams

Just happy to say Jan is being moved upstairs to her own room (sometime this afternoon) after being in ICU for 6 days. She got the NG tube out last night (that's the tube/drain that went through her nose to her stomach) and she is off the oxygen. She is in good spirits. Her ICU staff were wonderful and we are hoping the 5th floor staff are just as awesome. I will be able to spend the night with her at the hospital now. Yeah!!!

Day 7: Sharon Adams

Jan has been moved to a private room and we no longer have to worry about me being kicked out. The ICU staff was absolutely wonderful. She was moved to a newly renovated room on the 5th floor and I get to spend the night with her now. Even though Jan is out of ICU and has many of the tubes out, she is still very focused on managing pain and getting her strength back. She’s not very communicative when she doesn’t feel well. I read her the text messages as they come in and the FB messages when we check it in the evenings. She is resting often and is still recovering physically. She probably won't be ready for visitors until she gets back to Winnie. Again, thank you all so much for your prayers and well wishes. She feels very loved and this has helped her recovery tremendously

Day 8: Sharon Adams

It took a while but Jan was discharged from the hospital this evening. She is settled in the hotel in Kenner until she sees Dr. B. again on Tuesday. She is continuing to rest and work through the soreness. It is a very large incision. Oschner was an incredible hospital with wonderful staff. Everyone there was very kind and compassionate.

buh bye tami tumor!

Posted from Jan's Sunday Punch Blog.

Oncologist W: You know what, we just need to stop f*cking around with this. Let's just get it out.

Me: blink blink. (turning red) I can't stop blinking (you know that thing I do when I start blinking too hard). I keep trying to blink myself out of this. It's not working. I give Julie a blank, get me out of here look. Julie does this laughing, oh shit thing with her face when she's surprised. I think she wants out, too. (silent scream while I hover over the whole shitshow) But what about the other radiation treatment?

Oncologist W: Let's just quit f*cking with it. I'll get Boudreaux. (Yes, the surgeon's name is really Dr. Boudreaux and he's really good so don't even think about any Boudreaux jokes.)

I did another CT 3D scan in Kenner and a day later we were talking with the surgeon.

Surgeon B: (After betting Julie the surgeon would say no again. Or maybe she bet me.) Mhmmm. Mmhhmmm. Yeah (sigh and serious look as he shows us the scan). Well, do you have anything big planned for the next couple of months? We can plan around any vacations or trips....? We just need to get it out. We'll do a central hep..bwa wa bwaaa" ...sounds I can no longer hear...

Me: Me shaking my head, but I can't make a sound. (blinking again)

Julie: No, nothing planned.

Surgeon: Okay, then enjoy Thanksgiving. We'll do it November 30th here at Ochsner and you should be feeling better by Christmas.

He hugged me or some other sort of physical contact while asking me, who is not breathing at this point, if I was going to be okay. Julie just kept talking and asking questions.

So there you go. After many discussions, questions, logistics and calls to the nurse, tami is leaving the station. What she doesn't pack up and take with her to the bin, will either be radiated or chemo-gelled on the spot. Also, they'll do an extensive search for the primary cancer while I'm on the table.

Surgery, recovery, adjusting to new habits, diets and growing more liver. I'm not sure sometimes if I'm smiling, screaming, laughing or crying. I had no idea I'd be so terrified of the thing I most wanted—surgery. (DON'T GET ME WRONG, I'M VERY HAPPY ABOUT THIS.) For now, I'm generally calm. It gets easier every day to visualize little or no tumor.

tami tumor didn't get much smaller, but judging from the position, I'm not sure there was ever an amount that was going to make it easy. stupid cancer picked the middle of my liver to build her apartment with a winding staircase around my vein. The surgical procedure is called a central hepatectomy. My family and I will be in Kenner, LA (NOLA) for 7-10 days at or near Ochsner Medical Center. I head back to Winnie for a short while, then to Austin. Our plans are flexible.

November 30. buh bye tami.

bam, pow, smak, whhheeeeeeeeeeee!

jan

Okay, Okay, So I Took the Summer Off.

Published from Jan's Sunday Punch Blog.

I tried to take the summer off from cancer. (Insert LYAO) Here is an update since my last post. As many of you have kindly pointed out, the last time I posted was April 13. At least it was in 2011.

Last May, my doctors in NOLA reviewed test results from earlier that month, and were surprised and delighted at my 1cm reduction in tumor size. I was pretty damn happy about it, too. They suggested waiting until October to test again. I said no. We compromised by having me take a 5HIAA test which measures tumor markers over a 24 hour period and some blood tests. Those tests, taken in July, came back consistent with results of similar tests. What does that mean? It means I've been stable since April. My next scheduled measurement testing (CT and Octreoscan) was last week. I travel to NOLA again next week to discuss results and options for moving forward. I suspect it will be some sort of radiation treatment again, but slightly different than the Sirspheres.

In May, my local oncologist suggested or "wished for me" the ability to take the summer off from cancer. I laughed at her and questioned her sanity. She said, "I know, it's not possible, but wouldn't it be great if you could just turn it off in your head for the summer?" It was a great idea, and I gave it a good shot. For awhile I found myself thinking about things like crazy deadlines, stupid hackberry trees, non stop heat, appropriate water levels for tubing, the mom and baby giraffes as YO Ranch, missing fireworks on the fourth of July, Mozes and the endless amount of squirrels he chased, SPF ratings for the beach at Surfside and that crazy Labor Day Phase 10 tournament. I won.

It wasn't possible to totally forget about this big ass tumor or whether a transplant is really a viable option or integrating more supplements and increasing acupuncture sessions, and so on and on and on.

It was a busy, fun summer. Cancer or no cancer. I can't make any promises, but you're due an update next week after my trip to the Big Easy. Thanks for the continued support.

smack pow, jan

PS. Goodnight Steve

Someone Else’s Liver.

Since my last post, I traveled back to Rochester, MN for a follow-up visit to the Mayo Clinic. I followed up on the surgeon's suggestion to speak with the transplant team. Last summer, they were the doctors who suggested that while they didn't think I'd have much shrinkage with radiation or chemo, I might be a good candidate for a liver transplant. And in fact, the doctor I met with thought I was a good candidate for transplant. He suggested I do this sooner rather than waiting until later. He said he believed a transplant would benefit me rather than make things worse. They were ready to order the slew of tests to try to find a primary and to make sure I could be approved transplant.

The caveat, to me, seemed to be that I needed to identify a living donor. Someone who is a tissue match who can donate a portion of their own healthy liver. The portion of their liver would then replace my entire tumorous liver. In both patients, the remaining liver would increase in mass to accommodate what our bodies needed. In cases like mine the doctor been more successful in getting approvals for living donors as opposed to a deceased donor. It would be almost impossible for me to qualify to be on the list to receive a deceased donor liver for too many reasons to list in this post. I’ve not been a fan of the living donor. It's risky for the donor and difficult to ask anyone to go through that surgery. The doctor spoke with me about my concerns. He was understanding but didn't agree.

I let him know I would like to continue pursuing other options as long as they didn’t disqualify me for transplant in the future. (MIBG and PPRT) He supported me and wants me to keep in touch. He said I should wait until I'm ready to go through the transplant testing approval process since it is an expensive and extensive process.

I left understanding that he will be presenting my case to the transplant board at Mayo and I should call him when I’m ready. He did caution that waiting longer often means disease progression, but not in every case. It was a great experience talking with him and his team, and the Mayo Clinic is just an awesome facility.

So here is the funny part, in case you were actually waiting for the humor in this post. I brought my family up-to-speed on the appointment in an email later that afternoon. I've included some of the banter between my siblings and cousins.

David (brother 2): "So if I offered you my liver does that mean I wouldn't have one? Or will they just take part of it? I'm not really using it for anything constructive so if some of it would help you out I would be glad to give some up. It would probably mean I would lose some weight and I'm all for that."

Julie (cousin): "Hold on. I think we need to look at how much that liver (David's) has been through. On the other hand mine is pure and I could use a weight loss program. So you could take some of mine, but if you need the whole thing go with David."

Lee Ann G. (cousin): "Maybe we could all just give a hunk. I'm certainly not as pure as Julie, but possibly in better shape than Dave. So if you want to go middle of the road, I'm in."

Chuck (brother 1): "Jan, would you really put Dave's liver in your body? Do we need to talk about some of his history? He started drinking gin and tonic in junior high! I probably have more liver than any of you and there are no transmittable diseases coursing through my veins. You might (and this is my favorite part) even become a little more personable and definitely friendlier if you had a little more Chuck influence. Of course, you might eat a little more too."

Sisters (1 &2): crickets chirping...

In defense of my sisters, Karen and I have discussed our plan. She needs to be able to help take care of Mozie and I if I go through this and Sharon only reads email once in awhile so by the time she reads that I need part of a liver, I will have already found a donor.

I'm moving forward with trying to figure out how to move forward. There are no half ass opinions here. For the past year every doctor or team I've met with believes their way is the way to go. And I've asked the best doctors who treat this type of cancer. My next trip to New Orleans will probably be in May and I believe I will try the next step radiation treatments there. After that, I have lots to think about. And now I have another option which is a good thing.

Thanks to my family for being a constant source of love, support and laughter.

smak and pow,
jan

A Quick Trip to the Big Easy

From Jan's Sunday Punch blog.

My trip to New Orleans went well. Cousin Julie, sister Karen and I went in a little early to enjoy some good food and then gambling later at Harrah's. Not my usual night in NOLA, but we were celebrating Karen's birthday. Karen did well at the machines. Julie and I just sort of broke even.

I did slightly better than break even at the clinic. There was a small amount of reduction. I decided we would measure again in three months to see if I experience any additional reduction from the Sirspheres. If the size of the tumor stays the same or gets larger, then I'll go back to Kenner to have an intra arterial MIBG treatment. And hopefully go to Jazzfest 2011. I haven't found a good description of this treatment or analogy for it so I'll leave it at being similar, but not the same, as Sirspheres. No spheres are involved. But the doctor will deliver a blast of radioactive material to my tumor through my femoral artery.

My next steps, besides continuing to "reduce", are to revisit a doctor at the Mayo clinic to determine if there's any chance in hell I'm a candidate for a transplant should I eventually need it. I've heard Rochester Minnesota is nice in the spring. I visited the clinic there last summer with Sharon, so I suspect it could actually be cold. Looking forward to those nice folks there.

Thanks for your continued support, hugs and prayers.

jan