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Update: 27 December 2011 Email, 19 January 2009 It was 4 am on a brutally cold and windy day, Tim was sitting on the curb guarding our perfect spot to watch the Rose Parade. With the rain beginning to pour Tim complained about his backside hurting. I thought he was just cold which was unusual since he grew up in Iowa (people from the mid west don't know what real cold means). An hour into the parade, ankles submerged in freezing water, we decide to go back to the hotel and watch the rest of the parade on tv. That afternoon we drove back to San Diego, Tim's shooting pain started to get worst. Still he ignored it and thought it was caused by the cold weather. Two days later I drove up to Arizona to visit friends. As soon as I got there Tim called and told me that he found a rash on the left side on his ribs that reached all the way to the front of his stomach. I told him it could be an allergic reaction to the therma heat he applied the night before and suggested he apply baking soda to help with the itching. The next day he called early and said that the rash had a blister on top of it and was even more painful. In my mind I knew it was shingles but until I could see it with my own eyes, I couldn't be 100% sure. As soon as I got home from the trip I had Tim show me his rash and I was appalled by how awful and painful it looked. Working at a retirement home where our patients frequently get shingles frankly I had never seen anything like it. I told Tim that it was shingles and that he needed to go to the doctor in which he of course declined. He thought he'd be okay, that it would clear up on its own. Only it didn't. He couldn't bear the pain any longer so off to the doctor we went who confirmed my suspicion. Gave Tim anti viral and pain pills. It took about two weeks for the rash to clear and I told Tim to slow down, take a break, his body is telling him something is wrong. No 45 year old healthy man gets shingles for nothing but running his own business means that he had to work 10-12 hours a day. October came, Tim stayed as busy, stressed and sleep deprived as ever. He had also gained an unhealthy weight that all went to his stomach. He was concerned about his growing belly and tried a 9-day cleansing regimen of absolutely no food. He drank a liter of green icky fluid every day and lived off apples and nuts. He lost about 10 lbs but looked pale. His brother also came to visit and gave him a bottle of Lipitor since high cholesterol runs in the family. Tim took the pills for a few days and noticed that he was sweating at night. I told him to discontinue taking Lipitor and see what happens- maybe he was getting a reaction. We traveled two more times, Tim's night sweat persisted and he seemed to be losing more weight and looking even paler. Finally in mid-December Tim flew back to Iowa to pick up a car his dad gave him. Hours after he landed Tim was overcome with fever, chills and nausea. He was sick in bed the two days he was in Iowa. When he felt slightly better he forced himself to get on a flight back to San Diego. When I picked him up from the airport my heart sank by the way he looked. Tim assumed that it was the FLU he usually gets every 10 years, the only time he gets sick and he hadn't gotten sick in a while. So no doctors, no check ups, no nothing. Though this time, he never got better. The night sweats are constant, zero appetite and the fatigue was so severe that by January, he could hardly drive himself back home from job sites. A dry irritating cough also started. I was getting really worried, asked Tim to go to the doctor, which he again refused, partly because of having no insurance. (Canceled the insurance days before he got sick back in October due to the fact that he never gets sick. How ironic) Needless to say that Tim's symptoms only turned for the worst. He'd already lost 30 lbs from 215 to 185 lbs, then he noticed two pea sized lumps at the side of his left cheek. The headstrong Tim finally went to get checked. The doctor thought he had a severe case of infection, ordered a blood workup (which he never did) and prescribed a strong antibiotic, which took care of the two lumps. He felt better for a few days but the symptoms only got aggressive and the lumps came back with vengeance. Now we were really scared and went back to the doctor who told Tim that based on his symptoms, he might have tuberculosis, a new and stronger strain of tuberculosis. Although the chest x-rays were clear, he went to a lung specialist who ordered TB antibiotics to take for 21 days. The pills were brutal with no resolution. He was still ill and the symptoms threatening. At this point we were desperate and helpless so we decided to go to another doctor hoping that he could tell us what was wrong with Tim. Having no insurance we were forced to go a community clinic and saw a nurse practitioner who diagnosed Tim with severe sinus infection and prescribed some more antibiotics. I was frustrated by the disregard of the gravity of Tim's condition and there was nothing I could do. He did not have any insurance and finances were limited. We were confined to the services rendered by the clinic no matter how incapable we felt the facilities were for Tim's circumstances. We had nowhere to go. Concerned about exposure to tuberculosis, I saw my lung specialist and told him about the situation at home. He was floored and confused as the TB diagnosis and the chest X-ray were clear. He told me that Tim's symptoms are all associated with Lymphoma. He explained briefly what Lymphoma was. I rushed home to share what my specialist told me but before I said anything, I went and researched Lymphoma online only to be hit with the word CANCER. I guess I wasn't paying much attention to what my doctor was saying and I just never heard cancer. I was overcome with fear but I had to tell Tim. He didn't take it well. He finally broke down and said he was sick of being sick and not knowing what it has. We went back to the community clinic saw a different doctor who finally paid attention to his symptoms. She held Tim's hand and told him he had malignant cancer and there was nothing they can do for him from then on. The next day I sat Tim down, talked to him about getting an insurance no matter what the cost was. It's your life were talking about here I said. He agreed and called his broker to somehow get him in. Fortunately he owns his own business, was able to join a union and got insurance where pre-existing conditions are covered. Pricey but basically they take all types of insurance. We had to wait for a month in order for the coverage to kick in. It was the longest month of our lives. The very first day Tim finally had insurance, we saw a doctor who ordered a barrage of test from ultra sound to MRI, multiple X-rays and upper and lower endoscopies. (His hemoglobin was 8. The doctor thought he was bleeding internally) The lump had grown to a size of a walnut by now; MRI confirmed a sizable tumor, which needed to be biopsied. We were referred to ENT doctor who performed a needle biopsy with inconclusive results. He needed to do an open neck biopsy. After the surgery it was certain that Tim had lymphoma, both follicular and the aggressive type, possibly stage 4 Non Hodgkin's Lymphoma. Finally a diagnosis but he had gone for so long without treatment that it was dire that Tim got treatment as soon as possible. Three weeks post operation; we were sitting in front of an oncologist at UCSD cancer center. He ordered a pet scan to see the extent of Tim's cancer. The result came and back and it was alarming. Tumors too numerous to count was the report. His liver and kidneys were covered with masses. Some were as big as lemons, the spleen was enlarged and the bone marrow biopsy came back with 10% involvement. Tim was to receive RCHOP immediately, 6x for 3 months. The first infusion was a week later and was uneventful. Tim slept the entire 8 hrs. It was an out-patient procedure so we drove 30 min home at the end of the time. The next two days were pretty vague Tim slept most of the day other than when I had to drag him back to the cancer center for his Neulasta shot to help boost his white blood count. After the 2nd chemo Tim's hair started to fall out. He didn't want his head blotchy so I shaved his hair off and I cried the whole time. He also had a severe reaction from Vincristine so they had to remove the drug from the chemo cocktail. 3rd chemo was great, Tim was tired but had enough strength to wake me up at 4 am to show off his dance move. He also seemed to have more energy in-between chemo, was eating and regained some of his weight back. He was also back to working in his office at least 5 hours a day. 4th chemo was a breeze but after the 5th infusion that's when problems arose. Tim was in pain 24/7. He was weak, he laid on the couch from sun up to sun down. I was simply his arms and legs, he was in so much pain his whole gut was literally raw from all the poison infused in him to kill cancer. I was ready for chemo to be over. I ached for Tim and I wanted all his pain to end. Eventually Tim finished the treatment, relieved and alive. Never knowing that the side effects are there to stay for months more.
Two weeks after the end of his chemo, Tim had a pet scan. There was a tumor left on right side of his chest 11mm down from the original size of 17mm. The oncologist assured us that it would be taken care of since the chemo continues to work months later. If it did not resolve in 3 months Tim will have to do radiation. The typical lymphoma symptoms had come back within days, Tim's neck swelled like a balloon so we rushed to his new oncologist who found two small nodes, assumed that it was an infection, did nothing and sent us home. In a matter of days the swelling subsided but the two nodes grew to the size of lemons. I was afraid... for Tim, how he just got over the side effects of his first chemo and how he's finally starting to bounce back in health... now this. I was extremely afraid that he wouldn't make it this time. I'd seen with my own eyes what chemo had done to him physically and emotionally. I said to myself never again will I let him go through that hell but who am I to declare that it will never happen ever again. We went back to UCSD and found another oncologist hoping that he would agree to administer Bexxar instead of the conventional treatment. Needless to say that the oncologist was not only against Bexxar but was defiant as well, that we the patient had anything to say about what type of treatment Tim was to receive. He wanted Tim to participate in a clinical trial with Bexxar plus stem cell transplant which consist of 7 days of very high doses of chemo basically eliminating his immune system to nothing hoping that Tim's own harvested stem cell will bring them back to normal free of cancer. A possible cure he said and for a moment we considered but the thought of intense chemo and complete isolation for 3 months. We declined and promised ourselves not to come back until he agrees with Bexxar and Bexxar only. With Tim's health declining fast, I was determined. Days and nights were spent online searching for something that could somehow treat Tim without ravaging his body. In desperation I wrote to a (scientist/MD) good friend of ours who has been a Godsend and told her that Tim had relapsed. She wrote back and told me about DCA. I researched the pros and cons, anything and everything that I could ever read up on DCA, I was concerned about the negative articles written about this drug but we don't have anything to loose I told myself. After reading all that I have to know about this drug, I realize I am taking a risk for Tim but I didn't care, I was desperate for him to be better. I found Jim, contacted and informed him of Tim's condition. A few days later we received our first supply, 20g of this cocaine looking substance. I instructed Tim to take 900mg along with caffeine and Vit B1. After only 2 days... Tim kept asking for food, he said he was hungry. Then he wasn't napping every 2 hours anymore, he was sleeping with ease without the drenching night sweats. We were crossing our fingers and toes. Luine Pacheco
Email 4 May 2009 See also posts in the chat room by "Lulu" additional web links: http://pages.teamintraining.org/sd/carlsbad09/lbincal http://www.facebook.com/topic.php?uid=10228719652&topic=9188 Update December 2011 Tim and Lulu came to visit Ilene and I after Christmas 2011. As Lulu says, "Tim does look absolutely dashing thanks to DCA."
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