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| Journal - August 2003 | |
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This page was last updated 10/26/2003 . |
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8/31 - Sunday Hi - its Joel. I have very little to say right now. Except the past two weeks have been transformational for both Jennifer and I. We touched the face of death, saw God show up in a huge way, and have been forever changed. What can I say after that experience? Its no longer my story simply about chemo, side-effects or how I'm feeling that day. This is now a life being lived with a new set of glasses on...somehow more different than before. My heart is so changed, my outlook so different. When you're at the end of your rope, at the edge of your cliff, when absolute dependency becomes something you take literally, in our case it was on Christ's healing power....on God's master plan...no longer on anything else...then your life has to change. It has to. You're not alive if it doesn't. Well it was at that point we discovered there is something more for me to do in this life. While at the bottom of our existence. While recovering from vomiting every 1-2 hours for 4 days...and going through more pain than I knew existed. My liver had been failing. They said it usually doesn't recover. There was no rational explanation for why its now normal. I believe in miracles....and am walking today feeling like one. How do you put that into words? You don't...you can't. It just changes you. I am closer to God than ever before, closer to Jen, family and closer to knowing my reason for being than ever before. I simply want to do things that matter in God's eyes. Not much else counts. To say each day is precious is now far too cliché. Add about 100 miles of depth to that statement and it begins to reach how I feel every morning. Like Lance's new book title, "Every Second Counts." Am I healed at this moment? Well, yes... and no. My heart has seen amazing things...but there are tumors in my body. And I've lost an incredible amount of weight (20+ lbs). In fact, despite a week of numb elation after the good liver news, I am again suffering mild tumor pain. The kind of pain that says something is going on in my abdomen...the tumors are growing, dying or just there in the way. But they are there and I must deal with them. Does that mean God won't or didn't heal me. No. I'm not sure what He's doing right now. I believe I'll get well. But I also know its still a day by day process...a journey...we're still learning more with each step...and learning what to do about it on all levels - spiritually, nutritionally, medically. It has been that way since day 1....I believe, I trust God, I take action to get better and I keep moving. He's still in control. That's how this thing works. You're prayers are my lifeline. Each one reaches God's ears...thank you. And I cannot describe how Jennifer and I have grown. Isn't she amazing? I hope you've glimpsed what an amazing spirit she has through her journal entries. Jen is the very embodiment of why I'm still here...such strength and inner determination...what a tender heart after God. I only discovered a few days ago she was keeping you all informed online. I've not even yet read all her entries... More soon. 8/28/03 - Thursday Still Jen...Just a quick update on the last two days. Yesterday we went over to our church (Calvary Chapel) to talk to the athletic director. Joel was vomiting (sorry) right up until the minute before we had to leave for the appointment and I tried to talk him into rescheduling, but he refused to let anything get in his way. His stomach is still very sensitive. So, we packed a basin and a couple towels in the car and took off. We met the athletic director and talked about Joel helping out with the team. I think he's going to start as soon as he gets a little stronger. We had a great talk with him and he finished up the meeting by praying for Joel. Joel was feeling pretty bad by this time and we were about to drive home but decided to stop in to see Pat and Joyce from Calvary. They are in the hospital ministry and helped us get through the last couple weeks. We really just wanted to say hi and thanks, but we ended up getting the VIP tour of the inner workings of this really amazing church. We had never met most of these people personally, but they invited us in to chat like we were old friends. You have to understand how huge this church is and we used to think it was too big to feel really at home, but yesterday, we felt as if these people were extensions of Christ's arms, reaching out to wrap us in love and comfort. We slept well last night. Joel felt much better today and was able to eat pretty well, although jello is the easiest thing on his sensitive stomach. He now weighs 160. Some people might not recognize him right now. He is bothered by how thin he is and is determined to gain back the weight. Joel will be officially retired as of Sept 1. We have been very busy working out the administrative details of the transition. He should be having a huge celebration. My parents will be here this weekend and it's their anniversary, so we will be having a small party. I will make a decorative jello surprise. (During Discovery channel's Shark Week, my shark scientist friends in the lab made shark attack jello for a Shark week party. I did not see it, but I heard it was a work of art: made of gummy sharks suspended in blue jello with some unfortunate attack victim floating on the surface). Maybe I can make some kind of patriotic jello. Dr N. stopped by tonight. He brought Joel's lab results so we could see for ourselves how the liver function indicators normalized. He told us that he had never seen someone's liver recover from the degree of dysfunction it was suffering from on the 15th. We talked about where we should go from here as far as treating the cancer conventionally and some of the strange alternative therapies we had heard about...everything from electromagnetic shock machines you can buy in Mexico to eating apricot pits to doing nothing at all. He offered a reasonable suggestion of taking Methotrexate in pill form because it was the only different drug in this last mix and it has virtually no side effects that one would notice. We will pray about this and consider it along with the list of alternative therapies we have chosen to investigate (don't worry the electric shock machine is not on the list). 8/26/03 - Tuesday Jen for Joel...Big day today. Joel continues to improve but is really feeling exhausted due to the anemia. He constantly amazes me. He actually monitored a meeting in DC via web cam and net meeting (whatever that is). It was some big Coast Guard project he was invited to participate in but was too sick to travel. He also managed to get a meeting with the athletic director at our church's school to discuss a part time coaching position to keep him busy after retirement. On top of all that, his liver function tests have all but normalized. One liver enzyme is still about twice the upper limit of normal, but the rest have dropped back in to the normal range. We got the call from Dr. Niederman this afternoon and he really could not give a logical medical explanation. We feel the supernatural is at work and that God just has more that he wants Joel to do here on earth. By medical reasoning it is probably a short term response to chemo, but we are learning to rely less and less on how things appear to be and more on what we know by Faith. We are both so emotionally drained from the past weeks that we are just numb and do not know how to respond to good news. Is this the beginning of the miracle we've been waiting for, or just a fluke response to chemo? There is no way to know. We finally decided just to pray together to thank God for giving us another day. We are awed by His Power. When people ask Joel how he continues to beat the odds, he always replies "I serve an awesome God". Dr Niederman has kindly offered to come to our house Thursday to check on us and talk (Joel is still unable to even say "Cleveland Clinic" without nausea, so going for an appointment is out of the question). We've always known that he's a brilliant doctor and scientist, but we see more and more that he is a wonderful human being. Cancer is awful, but it has brought some wonderful people into our lives and we are richer for knowing them. It has also brought us closer to our family and friends in ways we never dreamed. And of course it always warms my heart to see our cat 'Fang' curled up on Joel's dad's lap fast asleep. Those of you who have had the pleasure of meeting 'Fang', understand the significance of that. (Just thought I needed to end on a lighter note). 8/25/03 - Monday It's Jen...Joel is feeling much better today. He has an appetite but still very weak and fatigued. His blood test results explain the fatigue (hemoglobin is down to 8.4). I think this is the lowest it's ever been. He'll get a Procrit shot from the home nurse to help boost it back up. The liver function tests will not be back until tomorrow, argh. I'm not very patient with waiting for test results. Joel's parents left yesterday and my brother left today. We were pretty lonely after they left. Joel's parents are such prayer warriors that we feel out lives have an extra layer of heavenly blessing and protection when they are around. We also had a visit this morning from the Coast Guard Chaplain. He spent some time just talking and reflecting on Joel's journey and closed the visit with a prayer. We spent the rest of the day working on his retirement paper work. Usually it is a cause to celebrate and plan parties, but this just does not have that feel. The whole thing can be very sobering and depressing if you let it. We are trying to look at this as starting a whole new life: no chemo, no Coast Guard...It's a little scary but we prayed that as we journey into some of the biggest unknown territory so far, that God would guide us to take the right actions and lead us in the right direction. Joel has already had some clarity as to what he wants to do for the rest of his retired life, but I'll save that for him to talk about. I have a feeling he'll be pushing me out of his computer chair very soon. 8/23/03 - Saturday Still Jen...I'm getting in the habit of updating the journal now. Joel will have a hard time taking back control when he feels better! Today was kind of up and down. Joel is learning that he needs to be careful of how much volume he puts in his stomach. He tried to drink a whole glass of Gatorade and it just came right back up. That kind of set him back for most of the day, but by late afternoon, he was up and sitting on the edge of the bed. We did some exercises together; leg extensions, stretching, some arm and upper body strengthening using my hands as resistance. I knew my fitness training would come in handy one day. We had the first visit from a home care nurse. She took blood (she was surprised she could find good veins), did an exam, and took vitals. She did not think he was significantly dehydrated considering all he'd been through. We'll get the results some time Monday. Until then we'll be praying for improving liver function. Joel was so happy to get care at home. He hopes he never has to step foot in the chemo room again. We just wish we could have our chemo nurses from the Cleveland Clinic take care of him at home. We were spoiled by them all. Tonight, we had a funny dinner with Joel all of us in the bed! Joel's parents, me and my brother and one of our cats, Fang. Everyone used cookie sheets for trays and just had a nice normal family meal! Watermelon and grapes were the big hit of the night for Joel. He looks better today and was a little grouchy so I think he's improving for sure. He's starting to prepare himself for the battle ahead. We continue to be amazed at how laundry and dishes have been magically disappearing and reappearing clean and put away. There must be a grocery elf, because as soon as something runs out, it is replaced within hours. There is no longer a broken anything in my house. We can now perform surgery in our garage because of the new shop light Joel's dad and my brother put up today. Joel and I wondered how people in his situation would handle this if they did not have the support we have had. I can not even begin to think what I would have done if I had been alone all week. I even had a chance to get out on my bike today and blow off some steam. I came back feeling ready to handle whatever this disease was going to throw at me next. 8/22/03 - Friday Jen here...I asked Joel if there was anything he wanted me to say in his journal to everyone and he said to tell everyone he's on the way back! Joel is a lot better, eating a bit more and staying well hydrated. He even walked outside in the rain just to feel it on his face and it was one of those strange Florida days where the sun was shining and rain falling at the same time. He was supposed to go in to see the oncologist, have blood drawn and liver tests, but he just felt that being upright for that long would cause the nausea to return. I get the feeling from him that it is crucial to his mental state to avoid further vomiting at all costs. So, we spoke to the doctor by phone and he arranged home nursing care starting tomorrow. They can draw blood, do an exam and report back to our doctor and he'll call us with any news. They can hook him up to get IV fluids if he needs them, but I really don't think he's dehydrated any more. He's gone through 4 liters of Gatorade since Saturday and drinks about 16 oz of plain water every four hours or so. I do not expect to hear any liver function results until Monday. Of course, as Joel improves, so do I. 8/21/03 - Thursday Jen for Joel...24 hours without vomiting, woo hoo! Today was a little better. Joel got decent sleep last night and this morning. He ate pretty well at lunch and dinner and kept everything down. He's very weak and now weighs only 165. I hope that is the low point and now he can start slowly adding the pounds back. I have found I need to keep a journal of all the medications and foods he eats because I was starting to get confused about when he took what and ate what and how much. I am probably operating a little beyond my capabilities right now, but getting guidance from Dr Niederman's awesome nurse, Joanne. We are supposed to go to the clinic tomorrow for blood work to check for dehydration and liver function. Joel says he feels that he is not up to handling that much activity right now and he wants to avoid more vomiting at all costs. We'll talk to the office in the morning and see what other options are available to keep him home and still be checked out. Yesterday we had a visitor. I probably should not say who because of security reasons (it was not George W, Lance Armstrong, or the Crocodile Hunter) but it was someone who is very high up in the Coast Guard. He took time out of an incredibly busy schedule to come by and spend some time with us. We were very touched by his kindness and obvious fondness for Joel. I've gotten lots of great ideas for natural treatments and supplements from a stomach cancer support list I monitor. I have a lot of leads to follow and research to do. Thanks to everyone who responded from the list. That's all for tonight. I'll update the journal with the news from the doctor tomorrow. 8/20/03 - Wednesday Jen for Joel...today was not as good as yesterday. The nausea and vomiting is back and Joel is back on the anti nausea drugs. It's so frustrating that he is suffering almost a week after the chemo session. He is so sick, we are definitely calling the doctor in the morning. He just took some pain meds and anti nausea meds that make him sleepy so he feels like he can get some rest now. Today for me was pretty busy taking care of Joel and dealing with some house maintenance. Thank goodness Joel's dad is here to help with that stuff. We had to order a broken part on the washer, get a roofer out to give an estimate on 2 leaks, and crawl around in the attic putting baits in an ant nest that we found up there. Joel's dad was only interested in causing mass mortality in the colony while I, on the other hand, was fascinated watching them do their ant thing and felt really bad that they have to be killed (cant we just relocate them to a suitable habitat with less human interaction?). That's the conservationist in me. That was the most time I've spent in my own attic since we moved in the house in 1995. My brother John is here to visit Joel and take care of me. He and Joel have become great friends over the past few years. We also had a very special visit from someone else this morning, but I'll have to tell the story tomorrow. I'm too wiped out to write the usual book. 8/19/03 - Tuesday Still Jen standing in temporarily for Joel...today was a better day. Joel has been really resting and sleeping much better. The nausea is subsiding little by little and he's on a pain patch that controls chronic pain over 24 hours. He takes dilaudid every 4 hours for more acute pain. This combination seems to work well for him and does not make him too 'fuzzy'. He says his head is remarkably clear right now. He's off the anti-nausea medication and probably has a pretty good hang over from all the drugs we were giving him to control the vomiting. It literally takes an ounce at a time to regain lost strength. An ounce of gatorade, then an ounce of boost, then an ounce of jello, then an ounce of protein shake. I almost gave him an ounce of my morning green shake, but I figured that was pushing it for now. We are still praying over his liver...the urine remains a scary orange color. Joel's parents helped with my 'honey do' list, since my honey is excused from all chores for now. They spruced up the yard and cleaned the house and did about 16 loads of laundry. As soon as Joel heard his Dad out in our back yard, he staggered out of bed and sat on the patio giving orders for about 20 minutes. Of course this was the perfect opportunity for me to slip him an ounce of boost and some watermelon! This poor man, any time he opens his eyes, the first thing he sees is me standing by the bed with a shot glass of strawberry Boost Plus or just lying next to him staring at his face. But instead of complaining, he says softly "I thought an angel was watching me". Our cats take shifts sleeping next to Joel. They have been thrilled to have a nap buddy for the past few days. Last night we all prayed as a family in our big bed and all three cats were sprawled out among the blankets. After we were finished I asked Joel's Dad if that was the first time he had ever held a prayer session with cats. Tonight Joel and I had dinner together in bed...like breakfast in bed, only later. We had mashed potatoes, chicken broth and iced tea. We had candles lit on the dresser and gardenias from our garden on the table (my sister bought him this great bed tray table to eat and read on). Outside was a typical Florida thunder storm so we turned off the music and just listened to the rain. I think it was the most romantic date we've ever been on. 8/18/03 - Monday It's Jen here today...I'm
updating the journal for Joel. I asked Joel what he wanted me to say in
this journal entry, and he told me to pour my heart out. So...here goes. At this point I could not speak. My sister (now you know why that was important how she just 'happened' to be here) just grabbed my hand and squeezed to let me know she was there. I grabbed Joel's leg and squeezed to let him know I was with him. Joel and I prayed, as we have before every decision, and agreed to go ahead with the chemo plus methotrexate plan in hopes that it would do enough damage to the tumors to keep him out of full liver failure. Joel made it through the chemo session but he was very sick, much sicker than usual. He began to throw up blood and tissue and digestive secretions (sorry, this is why I don't write on Joel's site much...I'm just to detail oriented and wordy). This continued every 2-3 hours Friday night, all day Saturday and into Sunday. Sunday, Joel's parents arrived and spent most of the evening with him in quiet prayer. They told me later that they laid their hands on their son's abdomen where he felt the tumor pain and prayed for a very long time (this will be important later). Joel continued to worsen as time went on. I was in touch with Dr. Niederman several times and we finally decided to take him to the ER Sunday night. The concern was that there was severe dehydration, an obstruction somewhere in the GI tract or liver failure. Everyone was so wonderful in the ER. They got him settled and hooked up to fluids in record time. An x-ray series showed that there were no blockages. A big sigh of relief! Also, his blood tests indicated that he was not severely dehydrated, hard to believe after all the vomiting. Then the real shocker...his liver tests showed astounding improvement...miraculous improvement. They were still abnormal, but not as dangerously so. Chemo can work that fast and dramatically, but I think there was more to it (remember back to the previous night spent in prayer with his parents). The ER staff called Dr. Niederman and made it worth his while to answer the phone at 3 AM. He was thrilled. Joel finished up two bags of IV fluids and got home at 4 AM. I feel so much gratitude towards everyone that has taken care of Joel since Friday. They have shown us so much kindness and compassion. Today (Monday) has been a little better and Joel is keeping down jello, green tea, gatorade, strawberry boost and water. He has spent the last few days in a very personal, intimate conversation with God. Joel feels His presence more now than he has in his entire life. As much as he is suffering right now, be assured that he is at peace. I have been spending as much time with Joel as he can tolerate, just whispering to him about how much I love him and how proud I am of him. My heart is so full of love. I am doing everything in my power to help keep him comfortable until the horrible chemo side effects pass. My sister Sandy has taken care of
everything in my life since Friday and kept me from falling apart when Joel
needed me to be strong. My parents, with all their own crazy medical problems, have been so strong for me. They love Joel so much and will be here to spend some time with us in the next couple weeks. My brother is coming down Wednesday to take over for my sister, so I am well taken care of. We feel surrounded by the love of our families and friends. We feel the presence of God, his loving arms around us. We are so overwhelmed. 8/10 - Sunday Church today. Made it through driving and sitting up for a few hours. It was a small test to see where I was physically. It also felt good emotionally. Felt good to get out and about some more. Eating a bit more each day. I'm allowed to start solid foods this week. Good news. 8/09 - Saturday Jen ran another triathlon. She's been doing those for a few years, but got the bug again after watching Lance in the Tour de France. She's a great swimmer and biker, but wants to work on her running. Today she got 4th in her age group. I'm happy it is an outlet for her. It brings just one more degree of normalcy to our lives. Every little bit helps. I said I'd join her out there again soon. 8/08 - Friday I got medically discharged from the Coast Guard today. The discharge had been pending since this all started in March 2002, but my supervisors allowed me to decide when it was time to "pull the trigger". I asked to push the paperwork through about two weeks ago - and it just became final. I got retired with medical benefits. I'm thankful...God provides. There will be a significant amount of belt tightening in the family. But its enough to cover the basics and not force Jen to quit school and work just yet. Her scholarship continues to be a God-send. I'm an old-fashioned guy in that respect, and will always feel the need to provide for my family...sick or not. This retirement helps me do that a little bit. I'll use some part-time work to fill the gaps...but am most happy to have medical benefits covered so I can focus on getting well and not have to worry about how the chemo bills will be paid. God keeps showing up for me. This was a hidden burden I had not shared with many people. Never wanted a handout, pity or anything like that to come up in a conversation. It worked out just fine. I might do contract work for the Coast Guard...might coach at our church high school...not sure yet. Taking it slow...praying about it. One thing at a time...next chemo in a week...need to put back on some weight from that liquid diet. I'm still down 15 lbs. 8/07 - Thursday Working from home. Sitting up becoming easier - pains meds are balancing things out a bit more. Stent pain persists - doc said it would be like a surgical would healing - up to two weeks time. The liquid diet is giving in to things like oatmeal and mashed potatoes...which they said was o.k. About time. I was hitting the low 170's...need to add back a few more pounds to handle next Friday's chemo well. Trying to get back on that enjoyable but productive daily routine. It adds a sense of normalcy. My perspective is forever changed, but carrying on and moving ahead make me feel good. No, I don't live life by feelings anymore - that got shot a long time ago. But still doing normal things in a normal way - routine perhaps - brings comfort. And I think in timees of need God is all about bringing comfort for the weary. Thanks for your prayers. The weather is nice...sunny...warm. Things are good today. 8/05 - Tuesday Jen and I were visited by the new hospital minister from our church. He prayed with us and brought some material he thought we'd enjoy. Its nice to be connected despite being 'stuck' in the house sometimes. I appreciated his visit...and think we'll see more of him. 8/03 - Sunday I can't explain the past 5 days very well. Lots of pain, lots of new feelings, lots of misguided information from doctors we had to sort out ourselves. In short, the stent allows me to swallow more solid food. It opens the lower third of my esophagus by pushing out from the inside. It does that by pressing outward directly on the tumors that are blocking the way. What they didn't tell me was how unbelievable it was going to hurt and that I'd be on a liquid diet for 2 weeks. I was hanging at 185 lbs, now down to 172. I last hit that weight in 10th grade. I can only sit up for a few minutes at a time. I have to sleep with a wedge pillow otherwise the contents of my stomach drains right up my throat. The stent covered up the valve that stops my stomach acid from flowing wherever gravity takes it. I'm on pain medication regularly. Jen was with me through it all. Sleeping in the hospital room and everything. I can't write any more now...need to lay down. I'll give the details of last Wednesday's procedure later when I feel better. Its not for the faint of heart. All I can say is thanks for your prayers. I'm getting better each day...one day at a time. Thanks for coming down, John (Jen's Dad). And to Captain Grant, for hanging by the hospital bed. I understand there were more that wanted to stop by - but I'm not much for talking these days, and I'd like to recover a bit before I get any new visitors. Thanks. I'm just able to sit up today enough to read e-mail...thanks for sending it. Tasha, the camera is wonderful. I'll post some photos online as soon as I can.
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