Kevin here. Today is our 34th wedding anniversary and for the 34th consecutive year, JoAnne is not inspired with my "When we are together, everyday is a celebration so why make a big deal over one day" shtick. In the final analysis, we must be doing something right, because we keep waking up every morning next to each other. Happy Anniversary to my true companion!
And more good news. JoAnne just got back from the oncologist and they have decided to suspend chemo for a while. There has been some positive response to the treatments, but it has been a bit treacherous in getting there. Dr. Wilkowske thinks it would be a good idea to enjoy the gains that have been made and take a break from some of the complications. This is the artistic part of treating JoAnne's type of cancer. All the scientific evidence says that CLL is not curable, but it can be managed for long periods of time. And she is evidence of that. The goal is to maintain a reasonable quality of life. When the cancer becomes too burdensome, chemo is attempted with the hope of pushing it back some. And hopefully that can be accomplished without too much in the way of untoward or irreversible side effects/complications. That goal gets more challenging as time goes on and this round has had its share of tough days. For now it looks like at least the coming holiday season will be "chemo free". And with a new Christmas grandchild due, we have much to look forward to. JoAnne will go back in a couple of months for a PETscan to see what those little nodes are up to.
I started out early in the week with an update, but JoAnne kept adding doctor visits. You already know how the story ends for now, but I hate to waste all my creative prose so I will send it along. I will hold off on further updates until there is something new to report. We are all hoping it will be quiet for the next couple of months at least.
The suffix of the week is "itis" or med-speak for inflammation. You start out with a little sinusitis which works its way into otitis, travels the eustachean tubes to bronchitis and before you know it you've got a case of spousitis; med-speak for inflamed co-habiter. As our 4 year old grandson has taken to beginning sentences lately.........."Actually"....JoAnne is holding her own although she has a mammoth ear, nose and throat inflammation with a painful cough to match. It has been gradually increasing in intensity while they were trying to figure out a solution. The pulmonologist gave the lungs a thorough check up and determined that the previous pneumonia was mostly controlled. An ear, nose and throat specialist was on the schedule for the second week in November but the discomfort has gotten unmanageable.
Steroids, antibiotics, Tylenol and Percocet have helped at times, but not resolved the issue for her. Chronic pain tends to put a hitch in one's giddyup, but she's hanging in there. As for me, I rely on 4 oz. red wine tid. In Latin that's ter in die or three times a day. Much more of this and I will self prescribe 4 oz. red wine ad lib. That's ad libitum or use as much as one desires; freely. And you all thought I came by my sunny disposition naturally. Although she has no fever, thus likely no infection, she still overheats and feels like her head and ears are ready to explode. She thinks this may be what Chernobyl felt like before the meltdown.
A patient/spouse using the word "meltdown" is a red flag. If there is one thing I have learned in many years of dealing with JoAnne's cancer, it is to more quickly recognize the point when you call in reinforcements. I used to try and help her solve these issues until I learned the two sentences that have quelled and derailed much potential angst. "You must feel terrible sweetheart**. Let me put in a call to John for you." John is the triage nurse who resides in the bowels of the cancer center. Come to think of it, neither of us has actually ever seen John, so for all we know we could be outsourcing our needs to a phone center located in some strip mall in New Delhi. Actually.....he is a man with the heart and soul of a saint who JoAnne has gotten to know quite well over the years. It is his mission in life to be the first point of contact for all the many cancer patients who daily call in with between doctor visit issues. How one does that for any extended length of time escapes my powers of comprehension. As you might expect, these calls often come from patients who are struggling with their health and may be, shall we say, emotionally unhinged to varying degrees. In our house we also call that a non-linear state. But John is like a horse whisperer for oncology patients. He can gently and patiently talk even the most anxious off the ledge and help them find solutions to their problems. I mentioned to another nurse how much we/I appreciated John and she noted that he is highly regarded as an extraordinary practitioner. The world can never have too many people like John.
So first thing this past Monday, call John we did. And in a matter of a few hours they had a Tuesday CTscan scheduled and a Wednesday appointment with the ENT who 2 weeks ago didn't have even a slight opening until the second week of November. I guess it's all in whom you know and John's unique ability to accurately assess and position a patient on the Pain and Desperation Scale. Prior to the Wednesday appointment, JoAnne had a throat culture that returned heavy infection with pseudomonas. That was the bug that put her in the hospital with pneumonia in September. It can be difficult to eradicate so it has likely been festering since then. More of the antibiotic Cipro will attack that.
The Wednesday appointment with the ENT was interesting. The CT scan showed the ears and sinuses to be pretty clear. So why the cough and pain? It probably all traces back to the pseudomonas in the lungs which has left the throat sensitive and irritated. That creates a feed back loop where coughing begets more irritation begets more coughing and it is tough to stop. He also thought that much of the discomfort in her ears and sinuses was actually facial pain related to temporo-mandibular joint (TMJ) issues. Both of us were a little skeptical until he demonstrated. He pressed on JoAnne's jaw and said, "Does that hurt?" "No." Then her cheekbone. "No." And then a spot under her ear. "Yeowch!" And she almost jumped out of the chair. "That's your TMJ and it seems a little sensitive. Sorry for hurting you." Point taken.
The upshot is that she will go on more antibiotics with some other magic potions in an attempt to stifle the coughing while undergoing some physical therapy to ease the TMJ discomfort. And today it is back to the oncologist to see about the next round of chemo. Nothing is simple. And now if everyone has pencil and paper in hand we will begin the review quiz :-)
That will do it for now. Thanks to all for your support and prayer. We are truly blessed.
Cancer Sucks
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