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.