Tuesday, May 25, 2010

News We Can Use: Day +30 Marrow Biopsy: Leukemia-Free

The news that at last Gene’s bone marrow shows no signs of Leukemia could not have come at a better time. It is the reason he is, we all are, enduring this struggle and so we now know it has been worth it. I know he is savoring the news. He said yesterday, “We are not out of the woods yet. As far as turning the corner on the pain, we are not there, but I think I can see the bend in the road ahead.”

I have, as Gene of course has, completely lost track of time, except I do know that it is the end of May and I am amazed. The month of May has been a trial, to say the least. Thank you to all of you who’ve sent messages of hope and encouragement, I just haven’t been able to reply yet.

Gene is recovering from his most recent round of kidney failure, the numbers are trending in the right direction and that is huge. After an abdominal ultrasound Friday (I think) it was determined that he is now suffering from pancreatitis, an extremely painful inflammation of the pancreas, related to having “sludge” in his gall bladder (but not stones). He has not been able to eat or drink without it causing even more gastric and bowel distress. They originally gave him darvocet for the pain. They were worried about how loopy he’d been for so long on the morphine, unable to tell if that was a result of the damaged kidneys or from the morphine, or both. The darvocet only provided a few hours of relief and yesterday they put him back on the morphine. I now recognize Gene’s version of classic morphine behavior: deliriums (some of which provide the only humor in this situation), scratching and extreme restlessness. Gene can’t sleep on morphine, it’s weird, it stimulates him. A strange, strange drug, but it did provide the needed pain relief, relaxed the furrow in his brow.

The biopsy and associated chromosomal analysis also, incredibly, allowed the doctors to see that the tacrolimus, the drug given him for anti-rejection and anti-graft-versus-host-disease (the next big hurdle lurking on the horizon) did cause the kidney failure and perhaps the pancreatitis as well, so they know that they will not try it again, and will find another tool. Right now he is on prednisone (steroid) for that purpose but they say it is a short-term solution.

The second round of 20+ pounds of water weight has been coming off over the last few days and as good as it is to see that he has bones again, frightening to see that that seems to be all that is there. He basically hasn’t eaten in over a month. They’ve replaced his IV with a PICC line, this time in his right arm, most inconvenient but small in the scheme of things, so he is receiving fluids. As of last night even water was painful to drink.

When I spoke with Jim this morning he said that Gene reports feeling better and asked for tea and muffin, so that could be a huge turning point, we hope. He is still on 24-hour watch. I stayed one night (decided it was the second worst night of my life in terms of what Gene endured and I had supported him through, but it was also the night he most needed me, so that was fortunate), but mostly he just wants the hospital sitter from midnight to seven. Our hope is that he can progress to not needing 24 hour watch, get off the pain meds, start to eat, start to walk again…..and then we are on the path to home.

I’m taking the afternoon off to try to get some rest, maybe sun, maybe walk….definitely short on fresh air. We all talk about how the air in the room, though supposedly filtered, feels not right. Saturday we put Gene in the wheelchair and got the ok to wheel him outdoors for about 15 minutes. The sun was gone, marine layer in, but he said it felt good, but it wiped him out and he fell asleep immediately when we got back.

This weekend though, after I sent out that last plea for prayers and energy, I did feel a peace coming through. Friday I felt so desperate, but over the weekend I began to feel that we would survive. Although there was at that point no real change in Gene’s condition, just a slow movement of the numbers in the right direction, I think it was the power of prayer, the extra energy sent by all, so thank you. We are feeling the love, the concern, the care.

My team of angels continues to hold me aloft, even when I’m draggin’, they have been a miracle unto themselves. Gratitude also, knows no bounds.

Friday, May 21, 2010

Gene's Update: Day +27. 5-21-10. All Hands On Deck

Gene’s update: Day +27 May 21, 2010

We are in a challenging place and I just wanted to ask you to renew your positive energy, thoughts and prayers in Gene’s direction. As I’ve mentioned, it feels like it has been 2-3 weeks of lurching from crisis to crisis. At the moment, Gene is fighting on a couple of fronts. His kidney numbers are improving slowly, and that is most encouraging. He still however has a significant amount of water weight (size large pj bottoms purchased yesterday) and that has many associated problems including discomfort/pain and high blood pressure. His liver numbers are now high as well and I’ve not been able to discuss that with the docs yet but expect to today. For about 4 days now he has had extreme gastric distress, abdominal pain that comes in waves. They are not sure what it is, could be related to going off the morphine and he was not feeling that pain previously. His confusion level is much improved but between the kidney problems and the confusion they are reluctant to give him any more narcotic. He is extremely weak, needing help to sit up. Obviously not walking, a bit in the room after a lot of cajoling, and most worrisome, he is hardly eating. After pulling his central catheter for fear of that causing his 104 temp (which has resolved, now normal), he had an IV for a week. The other night they tried five painful times to replace it when it blew and finally gave up, they successfully placed a new picc line in his arm yesterday. They’ve discovered that the spots on his lung most likely are a fungal infection, aspergillis, the one they feared back in January, but say the good news is that between his new white blood cells and the anti-fungal medication they can target, he has a really good shot of knocking that out.

It is just a huge list of things not good……the good news is that his transplant seems to be successful he is making neutrophils and white blood cells and those numbers are all in the normal range.

He might be getting discouraged. He sleeps most of the time and getting him to eat 4 ounces of food takes about an hour. We are working our brains to come up with solutions. Patty and Esther are cooking up things to tempt him, and Esther’s Rice Pudding from the Cancer Cookbook was a success. Today I’m going to see if we can take him outside for air and sun.

Last night / this morning when I left at 1:00 AM I thought we were turning a corner, but have not yet arrived at hospital to see if that is the case. He did not sleep well and is getting platelet transfusion now and Jim is with him. We have him covered 18 hours a day and the hospital has some one sitting with him from midnight to 7 when we are not there, so that he doesn’t fall….without platelets that could be very dangerous. I’m on my way in and seem to be successful in badgering him to eat and walk, we bargain, bites, nap, bites, nap.

It is not that he doesn’t know how many people love him and are rooting for him, but if you could just let him know on an energy level, send him encouraging thoughts, redouble your prayers if possible. “Time to call in the troops and get that boy rockin’ and rollin’ again” says Patty. Thank you for your web of love and caring and prayer.

Sunday, May 16, 2010

Gene's Update: Day +22, May 16, 2010

Gene’s update: Sunday May 16, 2010, Day +22

It has been a really hard week. I keep thinking it is going to get better, easier. On the neutrophil front things are looking great. His neutrophil count is up to 6.2, and some lymphocytes (about 25% of the white blood cells) are just starting to fill in as well. If that was all there was we could break out the champagne. Doctors say he is in recovery, that it will take 4-6 weeks for him to start making his own red blood cells, and platelets could take a few months. And that part is in the normal range. His mucositis, mouth and throat sores are much better. He is able to eat some soft foods and rates his pain scale at a 3 out of 10, down from 7 or 8. He still has access to the morphine but uses it much less.

Just when we wanted to take a breather, he spiked a fever early in the week, started at 102 and went to 104. Doctor decided to take his central catheter line out thinking that there may have been a staph infection on it. They took it out, but it tested negative for infection. The infectious disease doctor that did such a great job keeping him infection-free for 3 months before transplant, Dr. Redfield, was called in and zeroed in on his lungs again, they ordered a lung CT scan, saw some new areas of concern, “nodules”, and did a bronchoscopy on Wednesday. So far nothing has been identified from everything they cultured but his fever is gone, in fact in the last two days his body temp has gone as low as 95.1. Weird to me, but doc said it is okay. That whole process has been extremely high anxiety, we’d gone through it in January and it is not without risk, but once again went smoothly, he was pretty drugged up for that day. The down side is that without the central catheter he has to be poked for blood draws once a day, and the IV has to be changed every four days. The IV inserts, twice now, have not gone smoothly as they say his veins are weak. Not sure what will happen on that front since it was originally scheduled to remain in place for about 3 months.

Then on Thursday his kidney numbers started going in the wrong directions again, including weight gain. This time the water that he is retaining is mostly in his lower extremities. The last time they thought it was the anti-rejection drug, tacrolimus, so they stopped it, then restarted it at a lower dose. They’ve now stopped it again, substituted a steroid instead temporarily, and are trying to figure out what is going on. After 3 days in which he seems to be getting worse, a nephrologist finally came in today, but they are not responding as aggressively as it seems they did the last time. No diuretics, some water restriction and adding a blood protein, albumin. Gene has most of the same symptoms as last time, except that he feels much worse, his legs so heavy and feet so swollen. His sodium levels are low and he has a bit of the confusion / delerium that he had but the levels aren’t as low and that part isn’t as bad. But he has no appetite, and mostly wants to sleep. Unfortunately he has developed bed sores on his feet and back from being down for over a week.

Another good friend from New Mexico, Terry Hennigan, one of our original partners in No Cattle Company, flew in Tuesday for 24 hours, to see Gene. We’d planned it, thinking that since it was day +17 and the worst was supposed to be over by day +14, that it would be okay. Even though it was the start of his fever, Gene was glad to see Terry, but tired very easily, even though Terry paced his visits. My sister Esther arrived from North Carolina this week and has joined the caregiving team, learning the ropes, already covering shifts. I’ve been there until midnight and Jim has been great about doing the early morning shift and Patty filling in and keeping us all fed and organized. I’m really, really tired. It feels like the last week has been non-stop high alert. The Bone Marrow Transplant unit seems to have almost twice as many patients as earlier this winter, so all staff are busier and more stressed, and there have been more temporary workers, including nurses, which is very scary for me when the nurse is not really trained in that specialty. Fortunately these last three days, we’ve had outstanding nurses.

Gene seems more ill, more fragile, more uncomfortable, to me, than he has at any time since this started, exactly four months ago. It feels more stressful, but part of that is certainly the cumulative effect. His spirits have remained strong and he tries to comply with all requests. Today, he seemed very taxed, not so happy. Needless to say, we are not out of the woods yet.

Wednesday, May 12, 2010

Muffin Recipe for Gene from The Cancer-Fighting Kitchen Cookbook


Almond Muffin Mania

Makes 24 mini muffins

1 1/2 cups almond meal
1/2 cup spelt flour
1 Tablespoon baking powder
1/8 teaspoon sea salt
1/3 cup agave nectar
1/2 cup mashed banana
1/4 cup organic milk, almond milk, rice milk, or soy milk
2 organic eggs
1/4 cup unrefined virgin coconut oil, or neutral flavored extra-virgin olive oil
1 1/2 teaspoon almond extract
1/2 teaspoon vanilla extract

Preheat oven to 350°F
Prepare mini muffin tin by generously oiling each cup.
Combine the almond meal, spelt flour, baking powder and salt in a bowl and stir with a wisk until very well combined. Separately, combine the agave nectar, mashed bananas, milk, eggs, oil , almond extract and vanilla and wisk until smooth. Add the wet mixture to the dry and mix well with rubber spatula.
Spoon batter into the muffin cups, filling each about three-quarters full.
Bake for 13 to 15 minutes, until a muffin springs back when touched in the center.
Let cool on wire rack for 15 minutes, then gently run a knife around the sides of the muffins to loosen them before turning them out.

Variations: To make chocolate orange muffins, replace 1/4 cup of the flour with 1/4 cup unsweetened cocoa powder. Omit the extracts and instead add 1 Tablespoon orange zest and 1 teaspoon orange oil (not orange extract) to the wet ingredients. Fold 1/3 cup chocolate or mini-chocolate chips into the batter once it’s mixed.
For ginger lemon muffins, add 1 teaspoon of ground ginger to the dry ingredients. Omit the extracts , and instead add 3 Tablespoons of finely chopped peeled fresh ginger, 2 to 3 Tablespoons of lemon zest and 1 Tablespoon of freshly squeezed lemon juice to the wet ingredients.


From: The Cancer Fighting Kitchen, Rebecca Katz, 2009, page 192

Friday, May 7, 2010

Great News!: Engraftment has happened!

Gene’s update: Friday, May 7, 2010, Day +13

Good news and great news. The good news is that Gene’s sodium levels are adjusting and even a few digits of difference has cleared up his confusion. Last night was a much better night….not just because they found a cot for me, but because Gene was more himself, and not up quite so much at night. We both got several naps in over the course of the night.

Then, right after I left this morning, Jim called to tell me that Dr. Miller reported that they have been able to determine that Engraftment ( the process of the cells settling into the marrow and beginning to make new cells, especially right now, new neutrophils) has happened. They looked at the samples by hand under the microscope (rather than the machine-based read-out usually given) and that 80 out of the 100 cells were neutrophils. So that means that the transplant appears to be working and that the cells will shortly be on the job repairing his mouth, and kidneys too, I’d imagine.

YeAAAAAA! Prayers of Gratitude!

And so the roller coaster ride continues! But this is the second giant step we’ve been waiting for, and right now it seems like anything is possible. So, he still has the water weight…this morning down to 63 kg, coming off much more slowly than the last time, I guess because of the kidney damage, but they are working, and will recover. He is talking more over the course of the day, Jim said, compared to the last few days where talking was painful and hand signals were needed. He never really lost his sense of humor even in the worst moments, but he was definitely giving both me and the doctor a good-natured hard time this morning. He is ready to move from chicken broth to possibly a protein shake, not quite ready for mashed potatoes. His nurse today said that once the mouth starts to heal, it happens pretty quickly. They also said that he is one of the few patients they’ve seen that was able to eat throughout the ordeal, if you consider a few bites of oatmeal and chicken broth eating. He definitely has kept his appetite. Yesterday he told me that he never really got to have lunch or dinner….guess chicken broth just didn’t count for him!

So, thanks for being on the roller coaster ride with me, thanks for all your messages of encouragement and love, they really sustain me and I want to reply to each one. There will be more obstacles on the road ahead, but we’ve got the right tools for the job…..not the least of which is all of your continuing support! Gracias a Dios.

Thursday, May 6, 2010

Day +12: Not for the Faint of Heart

Gene’s update: Day +12, May 6, 2010

Synopsis: Really awful. Some complications they say are reversible. Gene is very confused. His mouth and throat are horrible, he can’t really talk and not sure how much longer they’ll even let him try to eat, though he is trying. He has a morphine pump which can give him 1 mg. every six minutes if desired, a very generous prescription. It will get better and the best news, he shouldn’t remember this part. That’s the summary, read on only if you want the gory detail.

I spent my first night in the hospital last night. They couldn’t find a cot despite 5 requests, so I put three chairs together with some pillows and caught a few naps. Gene was up a lot. His weight had been going back up for the last few days (up to 65 kg after going down to 53 after being back up at 69 the week before), as had some of the blood numbers that indicate kidney function concerns. He wasn’t really getting rid of any water despite being given fairly large doses of diuretics. And he has been really confused, including hallucinations, and nodding off frequently, kind of like a junkie would do, very scary to watch. When he wakes up he continues a strand of conversation (in his barely audible, painfully sore voice), that really didn’t exist. Two days ago when I expressed concern they said it was the morphine as they’d moved him from vicodin (which was also causing a great deal of confusion and “vivid dreaming”) to morphine in his IV to yesterday the morphine pump. Even after 24 hours on the pump he has had a hard time understanding how it works, but we’ve tried to convince him to just push it when it’s green and we’ll explain the details later. But yesterday they decided it was more than the morphine, it was very low sodium levels due to the water retention. Once again, I tended to take “electrolyte balance” kind of for granted but boy is it critical.

Yesterday they called in a nephrologist (kidney specialist), did a CT Scan of his kidneys, and analyzed his urine. She said he has developed a condition called acute tubular necrosis, death of some cells in the vessels in the kidneys. The “casts” in the microscopic analysis were in a state that is better than worse case and leads them to say that it is reversible, the kidneys will recover. In the meantime, his sodium levels are very low, leading to the confusion, the nodding off and those are such a delicate balance that they must be brought up slowly….so this may take three or four more days to resolve the sodium imbalances and resulting confusion and, I honestly don’t remember how long she said for the kidneys to heal. His numbers on kidney function were not any better today, a little worse, but the sodium levels are improving and so that is the good news.

His mouth, throat look so awful. I really couldn’t look, just looking at his lips was more than I could take. But last night he was convinced that there were noodles inside the blisters from the broth with a little bit of noodles that Patty made for him. So I looked with the flashlight as he asked me to, and reassured him that was not the case, but he even asked the nurse this morning to look again. Pobrecito.

And he is itching all over, scratching, scratching, putting on lotion in the middle of the night…I’m worried that he’ll create infection from scratching his skin raw. So for the time being Jim is covering the early shift, he got there at 7 yesterday and today, Patty is doing the cooking for all of us, laundry, sewing sleeves back on pj’s and hemming, AND the midday shift and last night and tonight I have the night shift. It is amazing how unattentive they were to Gene in the night. And it was the student nurse who is finishing a 2-year degree who was doing all his vitals, blood draws, etc. She was great but still….this feels so critical to me, more critical than it has ever been, that I wanted him to get more attention. The regular nurse did do her regular assessment, but as Patty, Jim and I have discovered, his “self-reporting” is no longer accurate. So this is why the caregiver role is so very critical. And why I am so very blessed to be able to share it, I can’t imagine doing this alone. And yet even some patients, let along caregivers, are alone.

I knew this time would be rough but we kept telling ourselves better by day 14, as they’d originally told us. With day 14 only 2 days away, and the doctor now saying (once again) “or a little bit longer”, and it seeming more dangerous, more critical then ever…..I could not have truly anticipated how very, very, hard this would be. And it is compounded by the fact that this is a complication out of the norm. Apparently, as explained by the nephrologist, the kidney damage was caused by an interaction of two of the (many many) drugs he is on, the antifungal and the tacrolimus, anti-rejection. A “very rare” occurrence….but we got it. And because of his confused state and extreme challenges in communicating (we are getting some hand signals going on), its not like it is really Gene, but of course it is. It is just so hard to watch him hurting so much and being so out of it. And in all of this, he really isn’t sleeping that much. He was up every hour from midnight when we shut it down, sort of, to 4 AM when they did vitals and blood. Then he actually slept, based on his breathing, from about 4:30 to 6:30 and then he hadn’t gone back to sleep when I left around 9. And I think that is more the norm than not, but he says he slept well. Again, self-reporting not accurate. How would they (nurses and doctors) know that if someone were not there to counter his claims?

Anyway….tonight they’ve promised me an air mattress to go on the chairs, and I’ll bring my own pillow. Patty and Jim are just incredible in the level of support they are providing to both Gene and I…..I can’t imagine being able to leave him alone and I can’t imagine not being able to step away for a bit. So this part of the ride is taking a toll on them as well….but my sister Esther is on her way across country to join the team and then take over…..they’ll be ready for the break! Breezy is actually hanging out in Patty and Jim’s room with them, and making sure I sit still when I’m home. So that is more than enough detail and time for a shower. Sorry to make you worry….but I know so many of you have been wondering. I was thinking I’d save some of these details until they were more past tense, but I’ve been repeating them so thought I’d put it out there. It’s a scary, sad and tenuous time, but we will cross these badlands, el malpais, and make it to the other side.