Jay and Lynn Baird

In his own words-Jay's contribution to the 'tales from the trenches:

Diagnosed 8/27/1999 (age 51) For me, with stage-4 bladder cancer, neither radiation or a cystectomy was deemed appropriate by the Docs. So, it was chemotherapy for me. As you've probably already heard, the types and severity of side effects can vary with each person (the first chemo treatment is very telling); but nonetheless, here's my story.

The initially preferred chemo was MVAC (methotrexate, vinblastine, doxorubicin [adriamycin], and cisplatin); however, when I was diagnosed, my kidneys were in bad shape; so, the Docs opted for taxol-carboplatin (one treatment each three weeks) which was supposedly less toxic for my kidneys.

The treatment side effects usually kicked in about 24 hours after each treatment. Key side effects for me were malaise (general discomfort), weakness, nausea, chills, dehydration, shortness of breath, and lowered blood counts. The nausea was easily kept in control with pills ("compazine"). Likewise, my red and white blood cell counts were kept in line with sub-q shots of Procrit/epoetin (for red) and Neupogen (for white). There is also a shot for low platelets, but its side effects (dizziness, shortness of breath, and malaise) were too much for me; plus, it didn't seem to have much positive affect on my platelets. The Docs gave me "oxycodone" for the malaise/pains, but I only rarely needed to take it. The chills were the most bothersome. I finally got a prescription for "lorazepam" which took 30 minutes to kick in, but did the most to comfort me when the chills got bad at home. For me, dehydration was also a big problem since I had to be put in the hospital several times because of it. I finally figure out that I needed to routinely drink at least two quarts of fluids each day and at least three quarts for 3-5 days after each chemo treatment. For me, one of those quarts each day is Gatorade. Other than the low blood counts, the intensity of most of the above side effects became notably reduced 3-5 days after each treatment.

Two cumulative-chemo side effects were hair loss and neuropathy (tingling feet and fingers). A few weeks after starting the chemo, my hair started falling out from all parts of my body (including eye lashes). The neuropathy began several weeks after starting chemo and got worse as chemo was continued, until about the 4-month point when the tingling intensity seemed to level off. At that point I would call the neuropathy pain at about a 4 (on a 10 scale), particularly when I first got up on my feet after being off them for a while. But, shortly after I walked around a bit, the pain subsided to a more tolerable level (a 2-3 on a 10 scale). The Docs gave me some Pyridoxine (B-6) and I'd heard that B-12 supplements have helped some people, but neither did anything for me. So...the neuropathy kept me in a more or less sedentary life style, but when I really wanted/needed to get up and about, a pair of loose-fitting shoes allowed me to fairly easily over rule the pain sensation and get around (just at a slow pace).

After a couple of months of taxol-carboplatin, the Docs changed me over to MVAC (my kidneys had notably improved and the taxol-carboplatin didn't seem to be producing the desired effect on the cancer). I had the same types of side effects, but they became a little worse/more frequent since the treatments were now three times each month (1st, 3rd, & 4th wks); plus, the cumulative building of the chemo effects on my body was becoming more apparent. At about the 4-month point, I think the chemo caused me to develop a blood clot in my leg which broke up and went into my lungs (I was hospitalized, etc. and a whole other story). The good news is that I recovered from the blood clot ordeal. Chills and neuropathy continued to be the worst comfort problems; but, my low platelet counts began to have a noticeable effect as well.

Luckily, I did not develop any bleeding problems because of the low platelets, but because the platelet marrow went so low and only slowly recovered, several of the chemo treatments had to be postponed/cancelled. To try and mitigate this problem, the Docs reduced the chemo drug strength in the treatments to 60%. Two noticeable things happened from the reduced strength/frequency of the treatments -- my hair started to grow again and I began feeling much better most of the time. It would seem that the hair systems make a fairly quick recovery from the chemo (i.e., within a few weeks). However, the neuropathy did not change much. As I've been told, it takes about 6-8 months for it to go slowly away after chemo is stopped. Throughout this reduced strength/frequency period, I was somewhat concerned about any reduced effectiveness of the chemo, but at least for me, test showed that there was no new cancer progression.

Now, in my last month of chemo treatments, I believe I would probably be in pretty bad shape from the side effects if my low platelets hadn't become a driving factor in the treatment. Hence, a summary point -- based on my experience, chemo is not an all or nothing deal...if the side effects become too much, the option always exists to ask the Dr to reduce the strength/proportion of the chemo drugs a bit, in the interest of life quality (patient's decision).

Jay's contribution to the Storyboard
BACKGROUND
US Air Force pilot for 29 years. Married, one daughter (late teens).

DIAGNOSIS
Unfortunately, my cancer was not diagnosed at an early stage. My initial diagnosis in Sept 99 was stage-4 bladder cancer -- transitional cell carcinoma (TCC) with metastasis (spread) to the liver. I did have some symptoms a couple of years prior to the diagnosis that might have been early warning signs (urgent and/or burning urine) but they were infrequent/fleeting; however, I never had the classic warning sign of hematuria (blood in the urine). The cancer was actually found because my abdomen/kidneys began hurting.
From a CAT scan and cystoscopy (urinary track look-see), the doctors found that the tubes between my kidneys and my bladder had been swollen closed by the cancer tumors and were producing over-toxicity problems in the kidneys. Subsequent total abdomen CAT scan and biopsy of the liver showed that the cancer had spread beyond the bladder. With stage-4 bladder cancer, neither radiation or cystectomy surgery to take out my bladder was deemed appropriate by the Docs; so, it was chemotherapy for me.

INITIAL CHEMOTHERAPY
The initially preferred chemo was MVAC (methotrexate, vinblastine, doxorubicin [adriamycin], and cisplatin); however, since my kidneys were still in bad shape (1 and 1/3 function with high creatine [a measure of kidney function]), the Docs opted for taxol-carboplatin (one treatment each three weeks) which was supposedly less toxic for my kidneys.
As you've probably already heard, the types and severity of chemo side effects can vary with each person (the first chemo treatment is very telling). For me, the treatment side effects usually kicked in about 24 hours after each treatment. Key side effects were malaise (general discomfort), weakness, nausea, chills, dehydration, shortness of breath, and lowered blood counts. The nausea was easily kept in control with pills ("compazine"). Likewise, my red and white blood cell counts were kept in line with sub-q shots of Procrit/epoetin (for red) and Neupogen (for white). There is also a shot for low platelets, but its side effects (dizziness, shortness of breath, and malaise) were too much for me; plus, it didn't seem to have much positive affect on my platelets.
The Docs also gave me “oxycodone” for the malaise/pains, but I only rarely needed to take it. The chills were the most bothersome. In addition to chills from being slightly cold, I developed a near-continuous case of chills across and between my shoulders that was not comforted by more blankets. It seemed to be more of a false neurological thing. I finally got a prescription for “lorazepam” which took 30 minutes to kick in, but did the most to comfort me when the false chills got bad at home.
For me, dehydration was also a big problem since I had to be put in the hospital several times because of it. I finally figured out that I needed to routinely drink at least two quarts of fluids each day and at least three quarts during the 3-5 days after each chemo treatment. For me, one of those quarts each day was Gatorade. Other than the false chills and low blood counts, the intensity of most of the above side effects became notably reduced 3-5 days after each treatment. The low blood counts usually bottomed out about 7-9 days after each treatment.
Two cumulative-chemo side effects were hair loss and neuropathy (tingling feet and fingers). A few weeks after starting the chemo, my hair started falling out from all parts of my body (including my eye lashes). The neuropathy began several weeks after starting chemo and got worse as chemo was continued, until about the 4-month point when the tingling intensity seemed to level off. At that point I would call the neuropathy pain at about a 4 (on a 10 scale), particularly when I first got up on my feet after being off them for a while. But, shortly after I walked around a bit, the pain usually subsided to a more tolerable level (a 2-3 on a 10 scale). The Docs gave me some “pyridoxine” (B-6) and I'd heard that B-12 supplements have helped some people, but neither did anything for me. So, the neuropathy kept me in a more-or-less continuous sedentary life style, but when I really wanted/needed to get up and about, a pair of loose-fitting shoes allowed me to fairly easily over rule the pain sensation and get around (just at a slow pace).

MVAC CHEMOTHERAPY
After a couple of months of taxol-carboplatin, the Docs changed me over to MVAC (my kidneys had notably improved and the taxol-carboplatin didn't seem to be producing the desired effect on the liver cancer). I had the same types of side effects, but they became a little worse/more frequent since the treatments were now three times each month (1st, 3rd, & 4th wks); plus, the cumulative building of the chemo effects on my body was becoming more apparent.
At the 4-month point (Dec 99), I developed a blood clot in my leg (swollen calf muscle and near continuous mild cramp)(I think the chemo caused it). The clot broke up and went into my lungs. I was hospitalized for two weeks and given “heparin” (IV), then “coumadine” (pills), to help desolve the blood clots. However, my oncology Docs decided that the interaction between the chemo and the coumadine would make it nearly impossible to keep the coumadine levels (blood coagulation times) within the required limits; so, they shifted me over to “lovenox” shots. The twice daily sub-q shots were an annoyance, but at least I didn’t have to have my blood counts tested 2-3 times a week for the coumadine level. After 4 months of lovenox, the Docs took me off of it because it was hampering the post-treatment recovery of my blood platelets.
After 3 months of MVAC (Feb 00), the chills and neuropathy continued to be the worst comfort problems; but, my low platelet counts began to have a noticeable effect. Luckily, I never developed any bleeding problems because of the low platelets, but because the platelet marrow went so low and only slowly recovered, several of the chemo treatments had to be postponed/cancelled. To try and mitigate this problem, the Docs reduced the chemo drug strength in the treatments to 60%. Two noticeable things happened from the reduced strength/frequency of the treatments -- my hair started to grow again and except for the neuropathy I began feeling much better. It would seem that the hair systems make a fairly quick recovery from the chemo (i.e., within a few weeks).
However, as I said, the neuropathy did not change much. As I've been told, it takes about 6-8 months for it to slowly go away after chemo is stopped. Throughout this reduced strength/frequency period, I was somewhat concerned about any reduced effectiveness of the chemo, but at least for me, the tests showed that there was no new cancer progression.
In my last month of MVAC treatments (Jun 00), I believe I would have been in pretty bad shape from the side effects if my low platelets hadn't become a driving factor in the treatment. Hence, a summary point -- based on my experience, chemo is not an all or nothing deal...if the side effects become too much, the option always exists for the Dr to reduce the strength/proportion of the chemo drugs a bit, in the interest of life quality (the patient's prime input).
Completed the 6th monthly cycle of MVAC. Latest MRI (Jul 00) has shown no new progression (i.e., no new leisions, but no remission either). Doc's plan is to not start anymore chemo for a while to let my body recover from the MVAC drugs.
The future plan is to wait three months (Sept 00) to do another MRI...hopefully the beast will stay dormant (no new progression) for several months past then! However, if notable new progression is detected, Doc will probably start chemo again (Gemzar?) Big picture plan is to hope (and pray) for a cure before I run out of chemo options. Notwithstanding all, am feeling very well (except for the neuropathy).

CURRENT STATUS
Sept 00 MRI showed several new lesions on my liver; plus several of the liver-function parameters in the blood tests showed reduced liver function. Had personal plans to go home and visit family so I asked for no treatments until later that month when I returned. The Docs accepted my request and said to return to see them on 3 Oct. As Sept wore on I increasing was tired out and the blood tests showed that the liver function was still decreasing.
The 3 Oct 00, meeting with the Oncology Doc (and associated blood tests) showed that the liver function was getting worse at an agressive rate; such that, the Doc predicted liver failure (and death) within 2-3 weeks. This was a BIG slam in the stomach...I guess we had hoped for another 2-3 months at least.
Nonetheless, am currently (4 Oct) freely fairly well except that my appetite is next to nothing and I'm very tired, even with several naps during the day. The Doc said that as my liver fails, I'll increasingly be tired and need to nap. One day, I just won't wake up from my nap. Hospice is coming out to help Lynn and I through the period.
God bless, Jay

On October 21, Jay wife Lynn sent us this message;

Hello,
Jay passed away at home yesterday morning surrounded by his family. He was not in any pain and had been sleeping very peacefully since Thursday evening. There will be a military funeral with Pastor Charles Crutchfield conducting the service.Jay will be greatly missed by all of us. Thank you for your prayers, cards, calls visits and friendship.
Love,
Lynn

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