Staying Moist, Getting Clear

We met with the onc last Tuesday for the usual check up and chemo and the good news is that my billies have trailed down a bit more to about 6 mg/dl. A very good sign but still not quite there. I am hoping that the dose I got Tuesday will be enough to push me clear and I will finally be done with this problem. An added benefit of Vectibix, though, is that it’s much milder on the body than the other things I’ve taken. No nausea or digestive issues – just the rash. And I have found that the antibiotics and the moisturizing do a pretty good job of keeping that at bay. I moisturize now more than a Swedish model…it’s part of my daily beauty regiment!!


Anyway, that’s all good and I hope it will all pay off with an “all clear” in two weeks. This past weekend, however, I did have a physical breakdown where my liver pain flared up as bad as it had ever been and I spent most of the day Monday exhausted in bed. I was worried that it was a sign that the Vectibix had stopped working. But Dr. S thinks that I have an “intratumoral bleed” which is to say that somehow I mashed one of the tumors and it’s acting up. He told me that the pain should subside in 3 to 5 days and that I should not curtail my physical activity – I thought perhaps I did it shoveling some snow last weekend or building a fire when we had no power. He said I could have done it then or by sneezing or rolling over in bed or any of a million other ways. So, I should stay the course on trying to push myself physically. And, I think he was right – the pain has dropped off significantly in the last couple of days.

So, we are still on course…just need to be patient (never my strong suit)…and keep eating, moving about and moisturizing! Hope you have all weathered the big October snows (if you got hit). We had a fair amount of tree damage but nothing major and even got our power back after just one day – much luckier than many friends and neighbors who have only come back online in the last day or so. Enjoy the weekend!

More Good Progress

Had another dose of Chinese hamster juice on Monday and another blood test.  My billies are down to 9!!.....8 more points and I will be clear!!!  Also, on the positive side of the ledger: I put on 4 pounds last week, my strength is better, my mental clarity has come back, my energy is much better, and my cancer pain has dropped so much that I'm not even taking my oxycodone anymore!  All excellent signs that I am going to get through this.  Not out of the woods yet, but I can see the light coming through the trees!!

So, I'm just gonna stick to my plan of rest, germophobia and eating like a Viking at a Smorgasbord!!  Thanks again to everyone for your good wishes.BB

All Hail the Chinese Hamster

I have some good news to report. My first dose of Vectibix has produced some excellent results! I am not out of the woods and frankly I have been whip-sawed so many times this past month by things I thought would work and then didn’t, that I am not yet able to say I know that I will get clear. But I am cautiously optimistic that – with another dose scheduled for the 17th and adherence to my other precautions – I may get there in a few weeks.


Here’s how “progress” is measured: My jaundice is the result of tumors pressing on the bile ducts in my liver. The severity of the obstruction is measured by the level of bilirubin in the blood. A normal bilirubin level is between 0 and 1 mg/dl. If it gets elevated, say to a 2 or a 3, a person will likely jaundice and issues arise, most importantly around getting sepses. When I first jaundiced in early September, my billies were at 8 – a level the doctors were very concerned about. My weekly readings since then were 13, 24 and 32. At 32, the doc switched me to the Vectibix and told me to prepare my family for a possible negative outcome.

This Tuesday, I went in for a consultation and blood work. I felt better and had a lot more energy over the weekend and so, I felt like I’d get a good result. To my great joy, my billies have dropped to 12!! Vectibix not only broke my horrific trend line up Jaundice Mountain but has made a major dent in getting me back to a safe landing. Robbie and I are very encouraged by this initial reaction and I hold out hope that it’s not just a one-time thing. So, I am not counting this as a home run yet, but the ball’s trajectory sure looks good!

As an aside, I did a little research into what Vectibix is. It is a monoclonal antibody, which means that it is engineered to only attack cancer cells. Most chemotherapy drugs attack fast growing cells generally, and since the fast growing/replacing cells of the body include hair, skin, digestive tract and the like, they have side effects like hair loss, rashes, mouth sores, nausea, constipation, etc. By comparison, Vectibix is easier on the side effects, other than the rash. Vectibix attacks the “epidermal growth factor receptors” (skin thingamajiggies?) of cancer so I guess that’s what produces the acne-like rash. But it’s not always easy for me to understand some of the medical jargon they put in the fine print – perhaps I can get my friend Ellen with her PhD in Pharmo-smartocology to explain it to me!

Notably, Vectibix is “produced” in – get this – Chinese Hamster ovaries! How they zeroed in on the Chinese Hamster, I will never know. But I suppose that in China – where I have heard that hamster ovaries are traditionally served with warm brie and a glass of chardonnay (I am told they have a succulent, slightly tangy flavor) – the dish must be known for it’s cancer fighting benefits. Of course, I am taking the Amgen-designed, weapons grade derivative which is a lot more concentrated but this blend of traditional and advanced bio-engineering seems to be working. So, all Hail the Chinese Hamster!! If they get me out of this mess, maybe I could get one as a pet – it might be good karma!

Tipping Point

Well, I have reached a tipping point in my cancer treatment. In short, my health has deteriorated rapidly over the past month. My jaundice continues to worsen as my liver function declines. The drugs I was taking no longer work and the location of my bile duct obstruction relative to the tumors rules out both potential surgical options. Last Tuesday, we stopped my FOLFOX chemo protocol and switched to a drug called Vectibix. It is my final option. If Vectibix cannot shrink the tumors enough to relieve the obstruction, I will be done with the treatment phase of my disease. On the other hand, if it works, the obstruction will clear and that will make me eligible to use a second drug that I have never taken before (but cannot in my current condition.) If that happens, I should have the opportunity to get some effective chemo and (hopefully) a new extension of life. So, there is still a path out of this mess, if I can catch a break. If not, I am uncertain how long it will be before my liver fails. It probably won’t be a lot of time.

So, hope is not lost, but I’m right at the edge of the chasm with one last chance to pull myself back. As a result, the Onc suggested that I prepare my family with the news since any breakdown, fever, failure or other complication may occur on very short notice and have dire consequences. We’ve done that and we are all ready for whatever comes.

I really hope it works. I really want to believe that this will all be a near miss we can laugh about later. But, I have to be practical and so I’m letting you all know as well. And I look forward to the opportunity to write a new entry sometime soon to say “Nevermind!”

On the good news front, after dropping 20 pounds in the last month, my appetite is re-emerging and with a lot of prompting and doting by Rob, I think I’ve got it leveled off. I’m going to work on gaining some of it back. Also, the last two days have been much better in the energy department - probably because of the high calorie food - so I feel much better. The uptick in energy is also very encouraging in that I think, maybe, it’s a sign that I have seen the worst of it.

In any event, the next 2 to 4 weeks are make-or-break. If the Vectibix works, I’m told I should break out in a big acne-like rash over my head, face and torso. So unlike my teenage years, I check desperately every day in hope of finding some pimples! Other than that – and barring any new, unexpected downward event – I just need to be patient and give this stuff a chance to work some magic for me. I meet weekly with the Onc now, with treatment every other visit, and just blood work to monitor my progress on the off weeks.

So that’s my story – any good vibes or pull you have with the Gods of Biochemistry are much appreciated. I hope to write again in coming weeks to let you know its working and this episode was just a scary, near miss. Thanks again for all your support and good wishes.

Update & My Wonderful Wife

I’ve having a slightly energetic interval from this jaundice thing so I thought I would post an update. The side effects from last week’s chemo have pretty much worn off and that is a big help in terms of comfort, but the jaundice really saps me off all my energy. I’m as low on mojo as I have been for years. All I can do is continue to rest and try to eat as rich a diet as I can to get some calories into the system. In the two weeks since I turned yellow, I’ve lost 11 pounds but I have the advantage of deliberately having porked up for the chemo, so I’ve mostly just shed the extra weight I put on as a cushion. If I can get stable where I am right now, it’ll all work out – assuming the J-Train leaves the station sometime soon. I don’t expect to lose my sheen though for at least two weeks – basing that on another round of chemo next Thursday. If I give that round a week to make some tumor progress, maybe things will ease. The hardest thing about all this exhaustion is that you can’t even think clearly enough to get your head around an idea complex enough to occupy a compound sentence. That makes concentrating on even a basic novel a tiring event.

In any case, like I said, I’m having a little lucid time now each day – an hour here or there – and it’s a great feeling!

Most notably, however, yesterday was Robbie and my 20th anniversary! We weren’t able to celebrate it but our trip to Maine last July was our gift to ourselves and it was a terrific time. Marrying Robbie was the single, best decision I ever made in my life. She is the most purely good natured, caring person I have ever known and she has taught me, through her actions, a lot about how to live a happy and fulfilling life. Her energy, patience, kindness, thoughtfulness and (above all) forgiveness are incredible. And you should realize, that living with me certainly requires a high threshold for patience and forgiveness! Everything positive I’ve done since we’ve been together could not have happened without her and my failings are entirely my own. I love her dearly and am only sad that my “condition” has brought us to this often bitter place. She deserves much better.  But when I say to her “I am the lemon in your lemonade”, she replies “Yeah, but the lemon gives the drink it’s flavor!” She is simply the best.

Living Yellow

My long, enjoyable break from chemo came to an abrupt conclusion this week and I jumped back in to the deep end of the chemo pool. I was prepared to get going again and, other than some pain issues, was feeling alright about it. In fact, I put on a few pounds of “cushion” to help stave off the initial weight loss. As it turned out, however, over my last weekend of freedom, I jaundiced – and that has made it quite a bit less pleasant. Doctor S had always warned about the possibility of jaundice and I guess we really did push this thing as far as we could. But, as a result, I was in and out of the hospital from Friday until Wednesday, which has been a strain on everyone. I’m also not out of the woods yet, but with some luck, it will clear and I will just get back to my old chemo regiment.


I did learn a few things about jaundice during all the doctor consultations. Here’s a quick lowdown on what it’s all about. Jaundice is the yellowing of the eyes and skin caused by an increase in the level of bilirubin in your blood. Simply put, when the bile ducts in your liver get clogged and the bile can’t flow, your blood bilirubin elevates and you turn yellow. In my case, the bile duct clog(s) is being caused by the tumor(s) pressing against the ducts. The biggest danger of jaundice is the risk of infection in the liver and blood.

The three options we discussed with the doctors this week to alleviate the problem were a) an endoscopy – where a scope is put down your throat to the base of the liver and a stent put in to open up the bottom of the bile duct, if that’s where the clog is b) a more invasive technique where a needle is put in through your side and a drain inserted to siphon off bile externally, if the blockage is high up in the liver or c) chemotherapy to reduce the tumor size and relieve the pressure. In my case, the blockage(s) appear to be high up in the liver, but their placement, relative to the location of the tumors made it “technically difficult” to insert a drain. The endoscopy docs were willing to try to reach it from the bottom but said upfront that it would be “technically difficult” to reach up the ducts that far with their instruments. Thus, my treatment course is to immediately get chemo and hope that some quick shrinkage of the tumor(s) will open up the ducts.

In the meantime, I need to be very careful about getting an infection – although I am not entirely sure what I can do about that except to stay away from public places. The combination of chemo and jaundice really saps all my energy anyway, so it’s not that big of a sacrifice.

So at the end of the day, I actually did start chemo, as originally planned, on Tuesday. The only change is that I was going to switch to a new drug – Irinotecan – rather than the Oxaliplatin I started with last time. Irinotecan cannot be given to a person with jaundice. So, Oxi it is and I have immediately felt its major side effect – extreme cold sensitivity. As I get more and more of it in the coming months, I will lose feeling in my fingers and toes, just like last time. But – if we can shrink the tumors and I regain a human hue, it’ll be well worth it.

As an aside, to gauge my progress, David and I have been analyzing my color using the Martha Stewart color chart we had left over from painting the den last year. I am a rather attractive shade now, somewhere in the neighborhood of “Ginger Root” and “Tahini.” Somehow I doubt it would sell if she had one called “Jaundice!”

Mother-in-law

It has been a while since I have blogged – mostly because it has been a busy and, frankly, rather stressful end to the summer. Despite late August’s little earthquake and hurricane, which would have made good blogging material, our attentions here have been on my mother-in-law, Pat.

During those little outbursts from Mother Nature, Pat was diagnosed with uterine cancer. She had surgery, which went well. However, the incision site soon became infected and the care for it has been a troublesome complication. She is improving steadily but it is still an issue. Once that problem is suitably put to rest, she will need to start chemotherapy, as the cancer is Stage IV, having spread at the cellular level to some internal tissue.

Pat’s spirits are holding up well, I think, and I am sure that the support she has gotten from her family and many friends has been a tremendous source of strength for her. Every bit counts in times like these.

Pat has always been a terrific mother-in-law to me and a fantastic grandmother for the kids. Her help and support, in particular during these last few years when my health has been sub-par, is appreciated beyond description. I hope that we can provide her with something close to that assistance as she starts her own cancer journey. With a few good breaks, there are still many reasons to believe that things will go well, but there will no doubt be some tough days ahead.

And, like with so many stressful things in life, a little humor goes a long way and we have had some good laughs at the predicament. My favorite so far is a quote from my 8 year old nephew, Nolan. His mom explained the hysterectomy surgery to him by going over the illustrations of the reproductive system in the health textbook he had from school. When Nolan later saw his grandmother, he wanted to be supportive and said “Grandma, I’m so sorry that you’re having trouble with your organ.” Couldn’t have said it better – those pesky organs!

Also – as a goof, Vicki had asked if there was such a thing as a “plush, uterus-shaped pillow” to get for grandma - like the plush heart-shaped pillow my father got from the hospital last year after his open-heart surgery. I scoffed at the idea, but evidently there is! See the picture above….go figure!!

In the future, I plan to blog, from time to time, about how she is doing. As I am coming up shortly on the 3rd anniversary of my diagnosis, I hope that three years from now, I will be sitting here blogging about her 3rd anniversary.