Kevin here. In our previous update, JoAnne had come through Chemo Round 2 and the ensuing weekend reasonably well with some adjustments to dosing and support medications. On Day 6 post-chemo, things started to go downhill as she became extremely fatigued to the point of barely able to get out of bed. Her nasty cough and lung congestion also increased markedly.
On Day 9 she went in for blood tests, as we suspected that her hemoglobin (oxygen carrying capacity of the blood) might have dropped necessitating a transfusion. Fortunately or unfortunately depending on your point of view, her numbers were all acceptable and yet, she felt as bad as she has ever felt. Emotionally, she was exhibiting Sybil-esque tendencies (editorial comment :-)) and was pretty despondent over the rapid turn of events.
On Day 10 we returned to the center for a meeting with the oncologist. He was taken aback by her condition as she could barely sit in the chair. He suggested that because of the complications JoAnne was experiencing, it might be wise to discontinue chemo. She did not take that well.
At this point, the oncologist wanted her to be seen by her pulmonary specialist and an Ear, Nose and Throat specialist in hopes of palliating her lung and throat congestion. Unfortunately neither of them were going to be available until the end of October which was discouraging given the state of her cough and wheezing. The oncologist said that he would be prescribing some steroids. He explained that when you are getting high doses of steroids, which JoAnne does with each round of chemo, the body can stop producing its own. When you discontinue steroid therapy, rather harsh symptoms can occur. That is when the little light went on for JoAnne and she remembered, "That is what's going on! I've been down this road before! The fatigue and emotional turbulence; it's from stopping steroid therapy too abruptly." How much was side effects from chemo and how much from steroid withdrawal is difficult to tell, but the long and the short of it was that giving her some steroids improved her quality of life immensely over the next few days. It is not a long-term solution, but she at least has found temporary relief.
And then occurred a serendipitous turn of events. Her pulmonologist's office called, said that the Drs. travel schedule had been altered, she would have an unscheduled day in the clinic and if JoAnne was available there would be time to see her. If you have heard JoAnne at her wheezing, coughing peak, you would understand the importance of that call. It is these experiences that lead one to ponder the existence of miracles and/or divine intervention. At the very least, those who have been praying hard for JoAnne can lay claim to succeeding in their endeavors. She met with the pulmonologist who has answered a number of questions, prescribed some additional meds and scheduled a CAT scan to see if they can get a better handle on the respiratory issues. That was last Friday and JoAnne is much more functional both physical and emotionally.
On Monday it was back to the oncologist where we discussed the possible role of steroids in the last visit. JoAnne then managed to convince him that she was up for another round of chemo. Today was the CAT scan. And next Tuesday she will begin Round 3 assuming that there is nothing untoward on the scan. She is a bit unsettled from the 5 cups of tasty coconut chalky contrast medium she had to drink this morning for the scan, but with beautiful weather and feeling better, the coming week should be pretty good.
So somewhere along the line over the last few weeks, JoAnne and I are listening to the nurse extol the virtues of controlling her exposure to bacteria. What with her very low immunities, we must be careful about hand washing, exposure to others with coughs and colds or other infectious diseases, antiseptic cleaning habits, etc. When its time for questions, JoAnne immediately pipes up, "What about kissing and hugging?" I think, "That is a very good question Sweetheart." It could probably go without saying that JoAnne may have been thinking of it in terms of kissing and hugging our grandson while I may have been thinking of it in terms of more complex derivatives of said kissing and hugging. The nurse looks at me and says rather sternly, "No kissing when her ANC (advance neutrophil count) is below 1.5!!" My instinctive response would have been "What are you looking at me for? She asked the question!" Instead, I took the high road and demurely muttered, "Yes, Nurse Ratchett. No kissing under 1.5"
Over the years as JoAnne's support person, chauffeur and all around kept man, I have made a conscious choice not to get too wrapped up in all the numbers relating to her cancer. However, this ANC number has now got my attention!! It would be a significant exaggeration to characterize ourselves as being on par with a couple of rutting newlyweds, but it is an interesting phenomenon of human nature well illustrated as I observe one's mindset when companionship is tied to a specific number. I liken it to a dieter standing on a scale. You hit your number and its, "Yippee!!! I get Haagen Daz!!" Or you miss the number and its, "Aarrgghhh! Not another week of rice cakes!!" It brings a new dynamic to the exercise of waiting for the test results as we sit together holding hands awaiting the news. We have also learned that there is an inverse correlation between the ANC and household chores/yardwork completed.
Sadly, this week we are getting a lot done as JoAnne's ANC came through at .6. A deflated Kevin whined to the Dr., "How can she go from 1.7 to .6 in less than a week?!" There was a logical explanation as the ANC boosting Neulasta shot she receives with each round had worn off. So if you see me lurking in seedy neighborhoods trying to transact business with a drug dealer specializing in black market Neulasta, you won't be left to wonder why. I can't imagine what the street value is on something like that :-)
I send this via JoAnne's email so that you can easily reply directly to her. She very much appreciates your thoughts and prayers. As you can tell from the message, she rides a roller coaster and there are frequently times when she is just not up to talking. If you get her voice mail via cell, please don't be offended.
Recently, we have started to encounter nurses, support personnel, patients and families sporting buttons or t-shirts which are emblazoned with a concise, eloquent, 2 word characterization of this disease that affects all of our lives. JoAnne has her shirt and the words are an appropriate way to end this update.......
Cancer Sucks
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