On the whole, I’ve had better weeks

Well, I’ve turned my profile picture purple for World Cancer Awareness day today on Facebook and my cover photo to the CC Foundation page for the month. Let’s make some noise and get some attention to this bloody beast of a cancer.

https://www.facebook.com/lisa.stegall

I can’t believe I haven’t posted since November. I’ve been reading, but sometimes that’s all I can do. I’ll admit to feeling pretty overwhelmed in November and even visited twice with a psychiatrist because I just felt so depressed and thought I might need some medication. I figured out fairly quickly that, as the dr put it, I was having a normal reaction to a crappy set of circumstances and decided I didn’t need therapy or anti-depressants.

So, here’s where I am in January. In October, I didn’t know what we were dealing with, but I was Stage IIIB (extrahepatic, perihiliar) at diagnosis. Active localized activity. One lymph node that was inconclusive for cancer cells. Although they were unable to biopsy the actual mass during my ERCP, all tests point to a classic klatskin tumor around both sides of common bile duct, unresectable at this point, as they think it has invaded both lobes of the liver.

The external PTC drains have worked very well. I’ve had them changed out three times now as they get a bit of grit in them and leak (generally a 6 week lifespan, but one leaked 3 days after replacement and they had to do it again), but they’ve brought my bilirubin level down from 15+ to 0.3. I’m back to a normal color skin tone (for me) and eyeballs. The dreadful itching is gone. We’re leaving the external drains at this point, rather than put in metal stints internally because there is some chance they could come out completely after radiation. I long for the day I can take a long, hot and deep bath or swim again. I hate that these tubes make those impossible.

I started chemo in November, right after my last post. Sounds like my gemcitibine/cisplatin regime is the pretty standard line of first attack. I’ll finish my 4th round on Friday. I’m on a 2 weeks on, one week off schedule. Baylor goes out of its way to make it as pleasant as possible.

I did my first post diagnosis MRI/CT two weeks ago. My oncologist said ‘scan is the best we could hope for’ because this blasted tumor is so hard to see on the scans. He says he is convinced the chemo is working well, though, because my blood work looks good and because all the little bile ducts within the liver look great, when they were all so inflamed on the initial MRI.

I’ve tolerated the chemo pretty well. I get tired and that seems to peak about day 3-4. I’ve had some nausea, but not bad. I haven’t had a huge appetite, but that’s improving. I’m slowly putting on some lbs – I lost 20 to start when I had the gastroj surgery in October. I’ve gained back about 8.

So, my oncologist presented me with the ‘bold’ plan – instead of finishing the full 8 rounds of chemo, move to IMRT now and see what we can nuke. I met with the radiation oncologist last week. The radiation guy has challenged me to try to gain at least 5 lbs before we start. I’m in on it, although I don’t love the idea of radiating my abdomen, but it seems my best odds to kill this off. While no one is saying never on resection, 3 opinions are that it is highly unlikely. I have my ‘mapping’ appointment set after my next chemo break. One of my friends thought I had a ‘napping’ appointment and was jealous. I’ll do some type of reduced chemo while doing IMRT. Will know more about that Friday. My radiation guy said the gemcitibine really reacts with the radiation, so don’t know if we will change drugs, reduce dosage or what.

So, that’s my update in a nutshell. I did start a caringbridge page and write there a lot more. I have a great group of supporters. I think that’s key. I really struggled early on with reconciling my image of myself as healthy and fit and active with my new reality as a cancer patient. While it was hard to admit, I was thinking the worst and mentally making a list of who gets what of my possessions. Now, I’m trying to reset my mind to having, as someone put it, a long term chronic condition and going about living with it. To that end, I’m signing up to ride my bike around Lake Tahoe in September. It’s a fundraiser for JDRF and it will my 3rd one. I started doing them after my brother died, at 48, of complications from diabetes. It gives me a target to shoot for and stay fit. Climbing the hills at Tahoe on your bike is no joke. I did it in 2012 and did a 100k in Nashville last year (in fact, two weeks before I was diagnosed). I have lost a lot of fitness since October, so this will be a challenge.

I’ll try to be a better (i.e., more active) forum member going forward. You guys make me think, nod my head in agreement, shake my head in frustration at how unfair this cancer is, laugh and cry.

LisaS

Heather, whatever I can tell you about Baylor or Dallas or anything, please let me know. I literally live about 8 blocks from main Baylor near downtown – no joke. I think my email is in my profile, but it’s steglaw [at] yahoo.com. Email me and I’ll send you my cell, which is best number to get me.

My friend’s husband who told me I was in the best place is a former UT Southwestern Med School prof, pediatric critical care guy, former Chief Medical Officer at Children’s Dallas and was recently named to head Texas A&M’s Health Science Schools. He’s a smart dude and I’m so glad that his wife shares him with us.

Lisa

Gosh, I can’t believe I haven’t been online here since October 17! So sorry – there is much going on in my world. My oncologist and surgeon here felt I needed the PTC procedure immediately, as I was extremely jaundiced, itchy and full of, well, bile that wasn’t going where it needed to go. I did that procedure here at Baylor in Dallas 10/14. It went well. I spent 2 nights instead of one in the hospital because I had nausea (so we thought). I was sent home on Wednesday, 10/16 and that’s about where I stopped posting. I couldn’t keep anything down and by Friday, I was back at Baylor in acute shape with severe dehydration. We spent the weekend getting me hydrated and then lost a day or so when the young internist assigned to me just kept treating me like I had nausea and not looking elsewhere. Finally, my husband said, well, what does Dr. Goldstein say (my surgeon – although he didn’t actually do the PTC)? Long pause…. who is Dr. Goldstein? Um, head of Liver Transplant and big dog at Baylor. Well, once Goldstein got involved, things happened and they figured out that I had two blockages preventing anything from going in or coming out my digestsive tract. One was a plump lymph node (although no sign of cancer cells in it) and the other was where the tumor was wrapping itself around my duodenum (?SP?) and basically choking it off. Before I knew that, I was worried the PTC was going to kill me, I felt so bad (it actually turned out to have gone so well, they took the external drains out way early).

So, I was back in Baylor for 9 days and I had a procedure called a gastrojejunostomy (gastro J), which is, in essence, part of what they do in a gastric bypass surgery. They rerouted and attached my stomach to avoid the blockages, which couldn’t be removed. So, I missed 2 weeks in the hospital and home recovering. While they were doing that, they went ahead and put in my chemo port and a feeding tube to use as a back up in case I had trouble recovering from that surgery or from the upcoming chemo.

I’m learning a lot (not that it was stuff I wanted to know) and I’ve lost all sense of modesty at this point.

I go back to the surgeon Thursday to check his work, but I think I’m healing well.

In the meantime, Dr. Chapman at Wash U did review all my scans, reports, etc. and was in full agreement with the folks at Baylor that my tumor is not, at this point, resectable. He was in agreement with chemo course we have planned. And, in the best news of all, my insurance only billed me $9 for his consult. Best money ever spent. Thank you to all who recommended him. Once we see if this is shrinking, I plan to have him take a look again. I want it to shrink enough to be removed, but placement is another sticky issue – mine is wrapped tightly around both sides of the biliary tree. It hasn’t spread, but it’s just in the worst possible location.

I go to chemo class this afternoon, whatever that is. I am supposed to start chemo Friday, but am still waiting on approval from Blue Cross. Really? I just spent 12 days hospitalized, had every alphabet test known to man and they drag their feet on approving chemo?????

So, all in all, I’m hanging in there right now. I lost about 15 lbs over October and it was weight I did not have to lose. So, I’m moving slow and in very baggy pants. My husband has been an amazing caregiver. I am trying not to overwhelm him with being needy, but I don’t always succeed.

I was told by several medical friends in high places that they felt I was in a better place at Baylor than MDA for this particular cancer because of Baylor’s top liver transplant program. And, it’s 8 blocks from my house. I am very happy with my oncologist, he’s kind, but no nonsense and isn’t going to blow smoke up my skirt needlessly. He’s anal retentive and I like that in a guy whose job requires it. All my primary care doctors (and my surgeon) said he was the best and the surgeon said he brought his own brother down from Tennessee to have him treated by Dr. McCollum.

Anyway, that’s my rest of October/into November. I went back to work yesterday for the first time. I’m working from home today and tomorrow.

Hope you are all hanging in there,

Lisa

Thank you Mark. You know, that was brother’s name.

I’m waiting to hear fr radiology re what I need to do for pct Monday. Honestly , it will be the first time I’m ever spent a night at a hospital.

Spoke to dr goldstein’s assistant and she getting all my records ready to ship to dr chapman.

Things are moving fast. I’m just trying to stay above water for most of it. I’m gonna take the weekend to go hang out with old college friends.