And Here We Go Again...

...only smaller. We've been planning to remove a tumor in lymph nodes behind my left clavicle bone since May. The surgery is tomorrow in Kenner and both Julie and Sharon are here with me to have some fun. Dr. B., in our post op appointment today, assured me this surgery would be no big deal compared to my surgery in December. But I have to go under full anesthesia and spend the night because of the location of the lymph nodes. My 6 month scans look good. I still have the mysterious pain in my upper abdominal area which I made sure to tell him about. After much poking and prodding, Dr. B. found it and determined it was a hernia around my scar. He's going to fix it after he removes the lymph nodes. Sort of a two-for-one. He can cut into the scar tissue and will just have to determine when he gets in there if he needs to put wire mesh or stitches to hold it. It may extend my recovery time, but hopefully not by much. It seems it was a byproduct of surgery and healing. So the little surgery got a bit larger, but still nothing compared to the previous one.

All has been well since my last post. I've been adjusting to not thinking about cancer 24/7. It's weird making that switch from my every thought being consumed with it to sometimes not thinking about it until someone asks me if I want a tomato or a banana. It's the best kind of paradigm shift.

Dr. B. told me something funny today. And if you don't know, most surgeons aren't typically very funny.
Dr. B: Can I tell you something now that the big surgery is over and it was successful?
Me: Of course. (I would listen to him read War and Peace if he asked me to)
Dr. B: You're surgery scared the shit out of me.
Me: Smiling. It scared the shit out of me too. Before or after the surgery?
Dr. B: Both. I just kept thinking what in the hell have I gotten myself into?
Me: Big sigh. See? It all worked out. And I still would rather have died trying than just have that tumor squish my portal vein and die a slow and painful death thinking you weren't any braver or different than Mayo or MD Anderson. (he laughed) And there's no need for anymore of this kinda talk mister. Let's just get in there and get out tomorrow. Keep it short. Am I first this time?
Dr. B: Oh yes, you'll most likely delay someone else's surgery this time. (he rolls his eyes)

I'm happy to say Julie and Sharon have both experienced their first Johnny's muffaletta. It was a good day for them. They are busy puttering around Kenner and Metairie while I'm in our room doing an abdominal surgery prep. All is well and life is goooooooooooood.

pow smak,
jan

Whoooohooooo!

I had tons of questions for Dr. B. When I finally read the surgical report and the scan reports. The questions just kept coming. As usual I prepare the questions before the exam so Julie and I are ready for the discussion. I needed to know if there was still tumor on the vein we've been worried about all along. tami was squashing the vein, which should be as big as a thumb, until it was almost flat. Totally flat meant no blood supply to my body and it would have been fatal to me. I also wanted to understand other things like why does my abdomen still hurt? What's with the sciatica pain? Why is my hair so curly now? Why so much muscle and joint soreness, etc.

Dr. B looked at the scans while Julie and I waited in the exam room. Julie was really sick. She started feeling bad the night before in the hotel room. She stopped talking and was pale and nauseous sick. After Dr. B came in he noticed how sickly she looked gave her a prescription. I started with the questions. I asked him about the vein. He looked at us and said, there's nothing on the vein. He showed us the images and there just doesn't seem to be tumor there now. It just looks like a hole in my liver. Dr. W saw the scans right before he came into the room with us and you could hear him bellow "holy shit" all the way down the hall. He told the intern to get some slides ready for their next conference. I was no longer the "eggplant that ate Chicago". I was now the most improved patient who once had a "gigantic" tumor and did I know how lucky I was? The stuff Dr. B couldn't get out seems to have responded to the chemo and ablation. They can't actually say I am cancer free because of the nature of how this cancer grows. But it grows slowly so we may not have to worry about it for awhile. Dr. B asked me twice if I realized how much more time he bought me compared to what we thought I had.

Blink...blink

I blinked all the way home. Julie and I usually have time to review everything we discussed in the exam and rehash details. But this time, Julie had to be sedated because of her nausea. I was driving. I just had my thoughts to work through the news. I'm still in shock. But I understand I have so much more time than I thought I had. I understand winning the lottery. I understand a dream coming true and my prayers being answered. All that is quite clear to me.

We'll monitor my health with blood tests and scans. I'll always have to take Sandostatin shots and have regular scans. I also have to have a very small tumor (6mm) taken out of my lymph node in July or August. We haven't been concerned about such things before since the liver tumor was the danger. It's minor surgery so I'm not worried. I'm not worried about much anymore. And for some reason, not many things seem very scary...

Thank you. I'll continue to post. But for now, buh bye tami. Glad to see you go. BTW, Julie is feeling much better now.

This is an all skate!

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

It Really Was a Good Year

From Jan's Sunday Punch blog.

Happy New Year.

I'm happy to say today is year three since DX (diagnosis). I'm shooting for 20 to 25, but I'm always happy to have just one more. I've been busy testing and preparing for my next trip to New Orleans to see Dr. W. I've had two treatments of Sirspheres. If you remember, those are radioactive beads embedded in my tumor in an attempt to reduce it in size or kill it. Since the last treatment I've just been carrying on with my life while the medicine works. That's what you have to do. You have to forget you have cancer for awhile (as much as you can forget something like that) and do your life. It's gets a little easier each year. This year, no miserable, painful side effects from the chemo study. That made the holidays somewhat miserable last year. This year, it was pretty great. Some abdominal pains and the regular anxiety associated with "not" thinking about cancer. I almost had my head totally together during Christmas. My sisters might not agree, but we didn't ask them did we? I stopped having so many drama attacks around New Years Eve. I think. But I still have some focus and memory problems that might be caused by stress. Which might explain my losing streak in Phase 10 over the holidays. Even though you forget for awhile, you still experience cancer. I know, it sounds weird.

The initial reports back from my local doctor, Dr. BAH, is that there has been no new growth and the tumor stayed the same size, which is good. She gave me a multitude of things to think about and to ask the doctors at the clinic in New Orleans, so I'm all set. Now I just need for Dr. W. to review the reports and determine our next course of action. I'll keep you posted.

smak, smak

jan

“My job is to stay alive long enough for the medicine to outrun me and I am not going to be unnecessarily buoyed or unnecessarily depressed by someone else’s experience. I have my own fight to fight.” Elizabeth Edwards

Plan C Part Two

From Jan's Sunday Punch blog.

I've had both sides of my liver radiated with microspheres since I posted last. I was in Kenner, LA last week having the left side done after the right side was initially radiated in August. I struggled with the steroids, depression, night sweats, flushing and nausea, but eventually started feeling better when it was time to have the left side done. The doctors had me do a CT scan here in Austin so I could bring it with me. I picked up the results of that CT scan on Friday evening so I could have it when I left on Saturday morning. I read the radiologists report and the damn results of the scan showed the tumor had grown. Crap. (insert photo of me shaking clenched fists). It wasn't a huge amount of growth, but any little bit at this point sucks. And I couldn't talk to anyone about it until Monday at 8 am. Nice.

I did get to speak with a nurse at the NET clinic in Kenner on Monday morning. There are several reasons the test might have shown an increase in the tumor size and after talking to the doctor on Wednesday before the procedure we determined I needed to get through the whole treatment then we could do more extensive tests that are more comprehensive. The doctor initially said I would probably have an easier time with the left side. We talked about side-effects and how the instant the microspheres hit the tumor they start working so the tumor, as it dies off, gives off lots of gunk (hormones) causing the night sweats, flushing, etc. Not much to do about it but stick it out. After the procedure was over he mentioned he needed to speak to my cousins who were waiting for me. The hot doctor had decided at the last minute to give me a larger dose of the radiation. I responded with "so I won't really have an easier time with the left side after all?" and he replied "yeah, not so much" as he waved his surgical mask and rode off into the sunset. I was sedated so everything had this sort of ethereal, bad movie feel to it.

So I'm off again. I'm moody, crabby, sensitive, emotional and sometimes don't particularly care to be around other people. The nurse said it would pass and I'd probably feel better again by Christmas. Sounds great to me. I'm thankful for those patient folks I work with. The ones who are unsure they should step into my office, but do it anyway and usually with a big smile on their face. Thanks for making me feel normal when everything else isn't normal at all.

The radiology team at Ochsner was great and plenty funny. Lots of Cajun accents behind those masks which made it hysterical while I was in the twilight zone. One nurse asked if she could take a photo or two while I was being prepped for the procedure since the senior nurse was leaving in two days and trying to train everyone on how to do the prep for this type of procedure. Since I was already zinging along on sedatives I said, "sure, no problem..." I hope like hell I never see those photos on any social media sites because they were not a good look for me. That's all that needs to be said about that.

Thanks to Julie and Lee Ann for taking the trip with me and babysitting me while I came out of sedation. Thanks Karen for chauffering me to and from Fannett. And a special shout out to cousin Dana who brought butterfly bandages over so we could get the bleeding near my femoral artery to stop. Sounds a lot more dramatic than it really was. She has a cool head. Love love love to you all.

I'll keep you posted on any further developments, but really at this point I'm just a crabby cry-baby who can be seen laughing hysterically at times. This adventure does still slightly resemble a Fanny Flagg novel or maybe just a bad Lifetime Movie made for television.

smak
jan

Plan C Version VI

From Jan's Sunday Punch blog.

I'm happy to say we finally have a plan for now. Plan C version six. Yes, version six (embolization, study, surgery, chemo-embolization, transplant, oops no surgery—microspheres). I leave for Kenner, LA on Monday to have a procedure that will inject radiation in the form of microspheres into the arteries/veins that carry blood to the tumor. The spheres will hopefully create shrinkage havoc for the tumor. One similar to the Wicked Witch's demise in the Oz movie. The ideal result would be enough shrinkage that would allow a surgeon to consider resection. Most likely, this treatment will occur in two phases, six weeks apart.

Here's a little bit about microspheres: SIR-Spheres (brand name) are tiny polymer beads (about one third the diameter of a strand of hair) that are combined with yttrium-90, a radioisotope that emits pure beta radiation. Y90 (yttrium-90) has a “half life” of about 64 hours, that is, every 64 hours the level of radiation falls by one half until it is effectively gone after 2 weeks. The radiation from Y90 penetrates an average of only 2.5 mm (approximately 1/16 of an inch) in tissue. After injection into the artery supplying blood to the tumors, the spheres are trapped in the tumor’s vascular bed, where they destroy the tumor cells by delivering the beta radiation. The radiation is targeted to the tumor and after 14 days the majority of the radiation effect has occurred. SIR-Spheres are considered a regional treatment as the radiation is directed to the liver and does not affect other organs in the body (hopefully). Since the SIR-Spheres are biocompatible they can remain in the liver without posing any danger to the patient.

Unlike conventional external beam radiation, which can only be applied to limited areas of the body, SIR-Spheres selectively irradiate the tumors and therefore have the ability to deliver more potent doses of radiation directly to the cancer cells over a longer period of time.

So we, Cousin Julie, Dad, Bev and I, head to the Big Easy (Kenner is a suburb of NOLA) on Monday, August 16. The whole treatment process is a two-day outpatient experience (Aug. 17-18). We should be back in Winnie for recuperation by the 19th. If you're in the neighborhood, I'd be happy to whip you in a game of cards. But call first in case I'm in a crabby mood.

That's the plan. I'm excited about focusing on this strategy. I'm glad I learned tons this summer about my options, especially understanding what Plans D and E might be. I'm hoping for the best, again. Thanks for the support and the great notes.

I'll keep you posted and will publish photos. It ought to be an interesting adventure.

smack, jan

Many Opinions

From Jan's Sunday Punch blog.

Hey whatsup? I won't act innocent like it's okay I haven't posted in a long time. I know, I know, a blog is about timely communications... I truly appreciate all the the notes from folks checking on me since my last post.

I've spent the last few months researching and visiting specialists. I'm waiting on the third surgeon to determine if he can do surgery. If not, I've got to determine what the second best option will be. The scenarios: y90 Microspheres, bland embolization and the third is Peptide Radio-Receptor Nuclide Therapy (P.R.R.N.T) treatment in Europe. All have their benefits, and challenges in terms of side effects and insurance. When a treatment plan is determined, I hope to work in parallel with the Mayo clinic to determine if I qualify for a liver transplant.

I'm trying not to freak too much at the delays and the time it takes for everyone to weigh in. I'm also trying to keep it all straight in my head since everyone who weighed in has a different opinion or "idea". I'll keep you posted.

Here are a few observations from the last few months:

1. This tumor takes up 60% of my liver. Fortunately this has not changed much since my diagnosis in 2008. My expectation until this statistic was presented to me by Dr. O'Do at University of Iowa was 40%...tops. Imagine my surprise.
2. My brother David is a wimp about bland food and believes this is the only thing all restaurants in the midwest serve . Next time we'll need to pack a bottle of cayenne pepper sauce for him to have when the whining starts.
3. Midwestern folks refer to parking garages as ramps. Sure, I knew about stuff like pop meaning soda, but it would have been good to know this before we tried to find a place to park at U of I. Not to mention the added drama of David trying to maneuver a minivan. (Thanks for going with me Dave)
4. Not every CT scan requires an enema so it's a good idea not to keep asking "am I going to have to have an enema" every time you have a scan. People look at you funny and say stuff like "do you really want one Ms. Kiker?"
5. The people I met in Minnesota were some of the nicest. Sharon and I were certain the Mayo Clinic was heaven. (not really heaven, but you know what I mean...impressive)
   
6. On several occasions at Mayo, Sharon had to be retrieved from the rotating doors used in every building at the facility. I thought she had become more sophisticated about moving doors since her move to Austin back in 85, but maybe she's reverted back to her country ways after moving to Kyle? (thanks again sister for going with me to MN)
7. Being trapped in a room or car with my dog after he farts. If the the noxious gas he produces was some sort of miracle tumor shrinking treatment, I'd be cured. If there had only been a warning label on his little dog ass before I...
8. I am the 2010 World Cup Phase 10 Champion.

I'll keep you posted when that final surgical opinion comes in. Thanks again for the notes, calls and prayers.

love, love, love,

jan

ps. Thank you Carolyn and Minarovics for insisting (guidance, suggestion, hammer?) on a trip to Mayo. You were right. They are willing to consider a transplant. Thanks again.

Blogpost: Oh the Possibilities...

From Jan's Sunday Punch blog.

Sheesh. I know it's been a long time since I've posted. It's not because things have been boring. Quite the opposite this time. I'll try to shorthand the events of the last three months. I saw a neuroendocrine/carcinoid cancer specialist in Kenner, LA. Recommended "debulking" the tumor in my liver by taking out as much as possible. What? Surgery back on the table? Really? "Yeah it's risky and yes there may be complications, but your best chance at any shot of resetting your clock is to take the damn thing out. Oops, we can't take it out, so let's take out as much as possible and treat the rest with chemo on the spot. We'll take out your gall bladder, the other little tumor you never talk about, and feel around for the primary tumor while we're there. And by the way, this thing is huge."

Wow.

I went back to Houston and talked to my docs at MD Anderson. The recommendation was still, no surgery. No way. Chemo-emobolization or a study to "slow down" the tumor growth, but no surgery. They didn't seem to be supporters of debulking.

Shit. That's quite a difference of opinion. One of the top specialists in neuroendocrine tumors versus the number one cancer hospital in the world. Who the hell's going to make this decision? I opt to see another specialist. Not necessarily a tie-breaker, but to reinforce the recommendation of surgery. I leave for the University of Iowa in Iowa City to visit this specialist in early June.

Meanwhile, more testing to determine the logistics of a possible liver surgery. Not quite a done deal yet. For instance, how much liver must be left for me to survive? What are the vessels like? What type of strain is the tumor having on my liver? Is surgery really feasible? The answers to all these questions, and more, will be determined by any number of 64-slice CT scans, MRIs, etc. I've also been to a couple of support/awareness meetings and met other folks with this type of cancer and even some that have had debulking liver surgeries and more. Great people with plenty of good advice.

And that's where I'm at now. Teetering on the brink of information overload. Testing and waiting. I think, either waiting for a time to make a very hard decision or maybe I won't have to make a decision after all. Maybe there really is only one option after all the testing is done. Nothing happens very fast except the speed at which my mind can produce irrational and desperate thoughts. So for now, I'm willing a tumor to stop growing, drinking wheatgrass again and trying not to think too much. I also see Dr. BAH frequently for much needed advice. I'll try not to wait so long to update the blog again. Thanks, as always, for the constant support and prayers.

pow,

jan

oh shizzle.

From Jan's Sunday Punch blog posting.

Stability didn't last as long as I'd hoped. I was going for 25-30 years, but obviously not on that particular drug study. The tumor increased a bit in size on my last scan Feb 26. I was promptly removed from the study and the search for Plan C is currently underway.

Dr. F initially suggested a bland embolization. It's invasive and one I'd hoped we'd use as a fallback plan. Dr. F found a couple of drug studies as well. The studies are testing drugs to see if they effectively slow the growth of tumors while controlling the two main side effects of carcinoid syndrome. This time not so much about shrinkage, but control or slowing down the rate of growth. All are good options.

Cousin Julie and I are scheduled to see a Neuroendocrine Specialist in Louisiana today. We made the trip last night after a couple of weeks of mad shuffling to get biopsies, scans and test results to the offices here in Kenner, LA.

I'm not sure what the day will bring, but I'm hopeful and thankful I have options. It's been difficult to get my head around not being stable. "Hopeful" was harder to get to this time. It may be because there doesn't seem to be any interesting drug studies right now that could produce the shrinkage I need without risking growth. The options start being embolizations or other procedures I don't fully understand or haven't researched yet. But that's okay, that's what I'm doing now. "Hopeful" is back. It never actually left, but just needed to move out from under frustration and fear.

I understand there may not be a "silver bullet" out there for me yet, but I'll take a few strategically aimed pezzizles at this point.

I'll keep you posted. smak,
jan

Blogpost: Happy in the New Year

From Jan's Sunday Punch blog posting.

Happy New Year. Everything's been going fine. Or at least everything I'm going to write about in this blog. (see explanation of gastrointestinal tract from Benched blog) No, no new tumors, just occasional discomfort. I had to skip one dose of Avastin in January because of a gnarly sinus infection, but I did get back on track in February.

Still stable. Feeling fine. We are restaging at the end of February to determine if the tumor is indeed staying the same size. My postings have been less frequent because I'm quite boring as far as the cancer goes and that's a good thing.

What's been going on? I traveled to Scotland for the New Year and had a great time. Lot's of castles, beaches and snow. No problems with meds or angina while there. Enjoyed a Scottish beer for New Years and later in the trip a vegetarian haggis. Not for the faint of heart. Very soon after my trip in mid January, I adopted a dog named Mozes. Or maybe he adopted me? He's beautiful and brilliant. He keeps me busy, entertained, and he doesn't seem to give a shit about cancer. I quite often imagine his internal voice saying, "What do you mean you don't feel well? Getupgetupgetup, let's go, it's time for our walk m'lady." (This happens at 5:30 am every morning.)

I'm busy at work, pottery class and always, always trying to win a lottery. Whether it's the one with the big money or the one where the doctor says "it's gone." That sums it up. I'll check in after my restaging/measurement.

smak,

jan

Stable for the Holidays.

sta⋅ble

 [stey-buhl] adj. exhibiting no significant change

Happy Holidays. I was at MD Anderson in Houston on Tuesday and Wednesday before Christmas for my regular 9 week restaging. My test results were good. Another stable. I'll take it. We (Team Jan) are pretty happy (read relieved) about the news.

The CT scans, blood tests and chest x-rays on Tuesday went fine. Julie was with me as usual. The nausea during the CT scan iodine blast unfortunately permeated my peppermint armor, but I held it together. There have been no real issues with any new symptoms from the Avastin, Rad 001 or the angina.

On Wednesday, Dad and I met with Dr. F, Carmen and various other medical staff. After our discussion about the status of my tumor, my next question (in my head) was, so what happens with stable? How long will it last and what does it mean? Those are hard questions to answer. I looked the word up in the dictionary and frankly, I only really like three of the definitions. The one above and a building for the lodging and feeding of horses, cattle, etc. My personal favorite is the place where Baby Jesus was born, but technically that was a manger (a box or trough in a stable or barn from which horses or cows eat). I talked with Carmen about it for a bit (the stable part, not the horses or Baby Jesus part), and will continue talking about it with Dr. F. in future appointments. Nurse Carmen, if I haven't already mentioned, is in charge of the drug study I'm currently on. She also gave me the 28-day Sandostatin shot. Her motto for the shot: if it doesn't hurt, it isn't working. And she means it, but not in a bad way.

The best part of the trip? Seeing Mrs. Z Huddleston smile after her rigorous 3 week chemo treatment for Acute Lymphocytic Leukemia (ALL). I met her and her daughter, Robin, when I was in Houston at the first of December. She had just been diagnosed by her family doctor and moved her treatment to MDA. We watched the blizzard in Houston that day and talked about computers, resources, cancer, faith, and other stuff. They are great folks from Alabama and I really enjoyed and am inspired by her resilience after 3 grueling weeks of not only getting her head around having cancer, but dealing with being in isolation and the highly toxic drugs. She is a very strong woman with a very strong family to support her. GO Mrs. H GO! You can do it!

Happy New Year. Thanks for your constant support, prayers and confidence that I'll keep on keeping on. I'm looking forward to an awesome 2010.

smack,

jan

PS. To cousin Julie, my Dad, sisters, brothers, family, and friends who take the time to call, email or go to these appointments with me and shower me with a moon full of support. Thank you. One day I'll figure out a way to make those words bigger or at least as big as they feel. I couldn't do this without you. I know I'm not always a ray of sunshine and I tend to lose my sense of humor at times. But thank you from the parts of my heart not experiencing angina. The best parts.

Saved by a Starlight Mint

Great news. All went well during my cancer restaging/measurement last week at MD Anderson. Even with skipping a dose of Avastin (chemo), I had a minuscule amount of tumor shrinkage and no additional spreading. Onward with another 9 weeks on the drug study.

And yes, it was a Starlight Mint that saved me from the perils and embarrassment of iodine nausea and vomiting.

Each CT scan requires that I drink a substantial amount of mixed berry flavored barium. It's a chalky white, milk of magnesia-like drink that I sip slowly for 1.5 hours so it will light up my gastrointestinal system like a football field when it contrasts with the rush of iodine being pushed through my system by IV. Each time the iodine is pushed through the IV a tidal wave of nausea hits me like a mac truck. (Think New Years Eve drunk. You have to keep one foot on the floor while you are in bed so you'll stop spinning.) I get dizzy, my mouth and nose both wreak of metal.

I've tried different things so I'll stop gagging (and occassionally spewing) while in the CT tube. First I tried smelling alcohol during the scan. Next I tried a wet towel around my neck. At last, one very smart IV RN gave me three Starlight Mints and told me to keep one in my mouth and I wouldn't get sick. I gave one to Julie because she deserved one for dealing with my neurosis during restaging scans. I popped one into my mouth before the scan and it worked. I say saved. The radiologist kept reminding me not to accidentally inhale the damn thing while I held my breath during the scan. Me choking on a mint would mess up her scans. I'm going to give that big needle using IV RN a hug next time I see her.

My Dad went with me for the results discussion on Friday and patiently waited with me for my chemo appointment. It was a long day, but he managed to find a quiet spot with a good chair for at least two naps. I finally heard one of my favorite words from a very professional RN. She said "oops" very quietly while she was trying to put the first chemo IV in my arm...it was awesome. No really, it was terribly funny because you never expect them to actually say it.

happy healing,
jan

PS. The third Starlight Mint went to the chest x-ray guy because I put them in the front pocket of my scrubs and it messed up two of my chest x-rays. I thought it was the least I could do. I suspect he may not have eaten the mint since it was radioactive at that point.

Back in the Saddle-Blogpost

Back in the Avastin (intravenous chemo) saddle again. I received my 17th dose on Friday. Feels a little like starting over again after skipping a dose, but it's good to feel the awesome healing sting. I also received a flu shot. Nothing special about that except that I now feel impervious to those contagious folks who still come into work anyway, but still vulnerable to H1N1 until Dr. F decides it's a good thing for me. Thank goodness he's big on research.

Good times with Elise on the drive to Houston and back except when the chocolate on her granola bar looked funky. It's the little things that bug us not the big-ass ones. One would expect a brand spanking new chocolate covered granola bar to have grade A chocolate, but maybe our expectations are too high for an Exxon station.

Here are my two favorite quotes for the week in doctor visits. And yes they are absolutely taken out of context:

"Can you turn and face the other direction, I'm right-handed."

"Jan, we don't actually get extra points for killing you. After we've spent all this time and research getting the tumor small enough for resection, there are no extra points for killing you during the surgery."

Peaceful healing,

jan