Yesterday, my sister, Fiona, who lives in Spain, flew in for a visit! I have not seen her for years, and it was a nice surprise that she was able to visit. She had some business state-side, and was able to fly up from Louisiana. I am so glad to be able to see her. She made me some lentil soup today which was delicious, and is helping look in on me as Becky is still sick with some sort of virus.

Today I had my double bone marrow biopsy. They thankfully put me completely under for that procedure, so it was not as painful as it sounds. I occasionally forget and scratch those places, or bump them into the wall, or otherwise touch them slightly and then I get a good taste of the pain. On Hyperbole and a half's pain scale it jumps up to an easy "6" which is described as "Ow! My pain is super legit now."

The pain from my infected and cut rear end is calming down, and while I still can not sit on it, I can sit on a cushion that presses near it, which I was unable to do a few days ago. It often has a pain level of "8" which Hyperbole and a half describes as "I am in a disturbing amount of pain, I might actually be dying. Please help." Fortunately I am hooked up to a device that allows me to have a dose of fentanyl whenever I need it. Fentanyl is like morphine on .... well, morphine.

Fentanyl:
Mmm, beautiful benzene rings.

Fentanyl is about 100 times stronger than morphine, although, of course they give me a lower dose. I can have a 25 mcg dose every 5 minutes up to 300 mcg every 12 hours. I never get close to 300 mcg though - 2 doses and I feel fine.

I have a lung biopsy on Thursday, which will be guided by the CT scan, which means that they have me in the CT scanner, and put the biopsy needle in a little way, check on the CT scan to see where it is exactly in my body, move it a little more, and repeat. There are some nodules that were found the last time I had a CT scan, and they want to check to see what they are. The possibilities are: lymphoma, infection, or inflammation. If it is lymphoma or inflammation then we will not worry about it, but if it is an infection it will be cultured and I will get some more antibiotic. I am currently on 5 different antibiotics / antifungals / antivirals. I think - I may have lost track. You would think that ought to do it, but some of these bacteria and fungi are very specific and resistant to everything except a specific drug.

In good news, my neutophils are back up, climbing every day now, and nearly normal. My platelets and hemoglobin is also climbing towards normal. My stem cell transplant is tentatively scheduled for January 28th. It depends on how the biopsies come out and whether the infection in my bottom gets under control. We will go ahead even if I have some infection left, but would be nice for it to be substantially better than it is now. 

Parainfluenza

Posted by Becky

Leif and I both got what I would call a cold, but which is apparently a virus called parainfluenza. It causes colds in healthy people, and may or may not turn into something more serious in an immune suppressed person.

Leif was going to have the seton (drain) removed from his former abscess site this morning. He was in pretty good spirits yesterday, especially since his sister Fiona is visiting from Spain, but tired because of the virus. He slept a lot of the weekend. I am mostly staying away from the hospital since I don't want to infect anyone else in Leif's ward (it's a hematology/oncology ward, so many of them are immune suppressed). The flu is also a serious problem in the hospital. I am trying not to worry, but the hospital is full of flu patients.

In general, as of yesterday afternoon, Leif's condition was the same as it has been for a while; many causes for worry, no clear "good news" or "bad news," and lots of firefighting going on.

Just a reminder, Leif does not get a good cell phone signal in his room, so please call his room phone, 603-650-2108 to reach him. He will not answer if it's not a good time to talk.

Busy couple of days. High fatigue, and I have been healing from the surgery on my bottom. It still hurts more than is reasonable, and it is taking a while to heal. I can't really sit, and standing up uses that muscle as well, so it is constantly being abused. I have been doing a lot of sleeping.

I had an MRI and a CT scan yesterday, and today I had a PET scan and an hour in a hyperbaric chamber. The MRI is loud and sounds like somewhat tuneful hammers interspersed with slightly tuneful buzzing, not unlike a thermion. The whole thing sounds reminiscent of avant-guarde techno rave music. Including the importance of wearing earplugs.

The hyperbaric chamber is this almost perfectly clear acrylic tube. It gets pressurized to 2 atmospheres of oxygen, which is about 10x the amount of oxygen that we normally get. The idea is that it allows a lot of oxygen to infection sites and most bacteria like low-oxygen environments. Other than having a little trouble getting my ear and sinuses cleared today, being in the chamber was sort of fun and quite relaxing. The only downside is that it is clear, and so I felt a bit like a hamster. There is a nurse that sits next to the chamber, watches the instruments and keeps an eye on me. It is not like a CT scan where if something goes wrong they can instantly stop and pull you out - it takes about 10 minutes to depressurize. You can not take anything into the chamber, so no reading or listening to my books on tape. There is a television that will play DVDs, but I decided to nap as opposed to watching a movie.  I have 8 more sessions.

We will start my stem cell treatment in about 2 weeks. I am just waiting for the infection in my butt to get taken care of. It does not have to be completely healed to continue, but it should be more under control than it is now. My neutrophil count is back into the normal range, so I think that I should see some decent improvement over the next 2 weeks. It already feels better today than it did yesterday, so it  seems to be moving in the right direction. 

Fighting infections

Posted  by Becky

The update below is actually written by my sister Stephanie, who's visiting. I am staying at the apartment today and resting up after a draining few weeks. I don't want to get sick! Yesterday Leif had another surgery on yet another abscess on his butt. This time the surgeon put in a seton, to prevent the formation of any more fistulas or abscesses.

The big task this week is clearing up the infections Leif has, due to the immune suppression from this latest round of chemotherapy.

• Dr. Hill, the attending oncologist this week, came in and discussed the merits of giving Leif intravenous Ig (immunoglobulin) treatment; apparently this will provide a boost to his immune system, and potentially bond any antibodies he might be producing which prevent other blood products, like platelets, from helping as much as they might. It sounded low-risk and potentially helpful.

• An infectious disease doctor came in and examined his butt and his bumps. I left the room for the butt examination, so I don't know what the conclusions were, but it seems to be doing as well as can be expected. The bumps have not increased and most of them are getting smaller and less painful, with the exception of the one under his shoulder blade, which is still extremely painful. You can't see the place where they biopsied it, however, which to my mind indicates that it's not getting worse, particularly as his temperature is still near normal.

• Another doctor came in to discuss giving him hyperbaric oxygen treatments, which purport to speed healing by forcing oxygen into his body at double the normal atmospheric pressure, for about 1.5 hours a day. Leif and I both thought this sounded a bit like snake oil, but probably won't hurt him, particularly if he gets to stay in a quiet room with nobody bothering him for two hours every day. ;-)

I went with Leif on his daily walk; he walked a long way and I could hardly keep up with him. This brought his blood pressure up almost exactly as much as he had told the nurses it would, so he induced them to slow down his fluid drip so that his legs would stop swelling. He then talked with all these doctors and had energy left over to wear out his helicopter and read for awhile. Then he went to take a nap while I caught up on various odds and ends.

Where are we in the plan?

Posted by Becky

Leif's pain is under better control today, though he has a ways to go before it is back down into an acceptable range. The anesthesia/acute pain doctor came by this morning to see how things are going. The goal is to see how much Dilaudid (hydromorphone) painkiller Leif needs from his PCA, then convert that into an oral medication.

There are plans to put in a new PICC line today. Currently, because Leif only has his port, they can only run compatible drugs together; so, for for example, he can get antibiotic and IV pain medicine together. But nothing is compatible with blood products, so every time Leif needs a transfusion (like this morning), they have to unhook him from the PCA and stop the blood every so often to give him an extra dose of Dilaudid. The PICC line will fix that.

They added ciprofloxacin to his antibiotic regimen last night.

Taking a step back from the day-to-day, where is Leif in the overall plan? He's received his second dose of "hard" chemo now, the last one they will give of this regimen. The immediate goal is to get Leif through these infections. Once his infections are controlled, they will assess the status of the lymphoma via a PET scan. They need a window during which Leif has "minimal residual disease" and infections under control, in order to do the transplant. So we're in a wait-and-see period.

A long day

Posted by Becky

The good news is, the doripenem seems to be getting the Klebsiella under control. Leif's blood cultures from January 1 are still negative and he hasn't had an "official" fever (over 100 F or 38 C) in a day. He says that except for the places he hurts, he's feeling good - no feverishness or general crappiness.

The exception is the issue, though. The spot that the doctors started checking out in earnest yesterday still hurts, and quite a few places where Leif was feeling muscle cramp-like pain yesterday have popped up in similar-looking and similarly excruciating nodules. Those plus the soreness on his butt - worse since they drew the sample out of it a couple of days ago - make it hard for Leif to move, change position, sit, stand, etc. He has been getting around as much as possible anyway, since it's so important to maintain his conditioning, take deep breaths to keep his lungs clear, etc. He's been powerfully motivated by a remote-controlled helicopter that Karen and Beth sent him earlier this week. He took it out to the visitor's room this morning and flew it around a lot, charged the battery up and flew it around the room again this evening.

The Infectious Disease doctor thinks that the nodules on his shoulder and leg feel like the same thing. She's not convinced it is the superficial bacterial infection that the dermatology guys think it is. This kind of nodular appearance can indicate a fungal infection, and it seems to be spreading. She feels like we have some time to get it under control since Leif's fevers are reducing, but of course she doesn't want to potentially miss something that could be getting worse. She noted that a bloodstream infection is much more serious, so she is glad to get the Klebsiella under control. Fungal skin infections would normally be associated with a scratch or something, but there could have been something dormant in his skin from an earlier exposure, that is only causing a problem now that his immune system is suppressed. She asked about Leif's potential for fungal exposure - before he got sick, was he a gardener, did he dig in the dirt, spend time in the ocean, get exposed to moldy areas or construction, anything like that? Um, yes, all of the above and then some. If there was a fungus in his blood, it would have turned up in the blood cultures already. She said she'd talk to the hematology/oncology team (Leif's main doctors) about her thoughts.

So this afternoon, the Surgery team did a biopsy of Leif's shoulder site. They loaded him up on platelets before and during the biopsy. They also loaded him up on pain killers, but it was still an extremely painful procedure for him on top of all the other pain he was already feeling. I had gone to the post office, but Leif's nurse for today brought him some more painkillers while he was down there, and stayed with him through the procedure. When he got back, a team of nurses and doctors put together a quick plan for treating his pain. They gave him a Patient-Controlled Analgesia (PCA) pump with a continuous flow of morphine, plus extra morphine dosed out to him when he presses a button. After an hour when his pain wasn't controlled, they increased his continuous dose and the size of his extra doses. Part of the difficulty is that his pain was inconsistent - it subsided when he was still, but was intense when he moved at all. So the information the nurses and doctors were getting about how close he was to his pain limit was not accurate. Now the biopsy site is extra painful, too, and he has no comfortable position to sleep in.

They have changed his antifungal medicine from fluconazole to voriconazole, a stronger antifungal that Leif has had before. I am hopeful that tomorrow they'll start getting results from the biopsy and will be able to target the treatment even more if appropriate.

It's been about an hour and a half since they increased the dosing in his PCA, and that is not getting ahead of the pain, so the doctor just prescribed switching from morphine to Dilaudid, which is a stronger pain medication.

Please send good thoughts Leif's way; this has been a really tough couple of days for him. He's still been conscientious about doing all his self-care activities; mouth rinses, dental care, sitz baths, meals, and as much physical activity as he can stand.

More answers

Posted by Becky

The attending doctor came in right after I posted my last update, so we have some more answers.

Magnesium and potassium supplementation is because Leif's electrolytes are low. This could be because the chemo affected his kidneys, so he's peeing out more electrolytes than usual. This low electrolyte level could be responsible for the leg cramps. Also, what with the fevers and so forth, he might be a bit dehydrated, which can also cause cramping. Leif's getting some extra IV fluids, drinking plenty of water, tea, & lemonade, and maybe the supplements will also help soon. His blood pressure has been running a bit low - not super low for Leif, who tends to run low anyway, but low enough that some extra fluids can't hurt.

The folic acid supplementation is because his hemoglobin has been so low. They've ruled out bleeding, and think it's mostly because his bone marrow is so suppressed by the chemotherapy. He may also have a small amount of autoimmune hemolysis taking place; that means that his body could be breaking down red blood cells (not just the transfused ones, but his own, too), which can happen with lymphomas. His Direct Antiglobulin Test was positive, but he doctor says he's not experiencing "brisk hemolysis" - his LDH level, which is used as a marker for hemolysis, is normal. Anyway, the folic acid is to support Leif's bone marrow in cranking out red blood cells as well as it can.

They have not been giving him Neupogen shots to boost white blood cell production, because they don't want to risk making his spleen leak or rupture. However, his monocyte count is above zero today. Monocytes are the first type of white blood cell to start coming back, so this could be an indication that his bone marrow is starting to recover. If so, that would be quicker than he recovered last time he got this chemo regimen.

He's cleared to get celery with peanut butter snacks if I wash the celery really well for him, and we're getting him a donut cushion to sit on. The surgeon recommends not using those, but Leif found his donut more comfortable than the surgeon's recommended soft pillow. His butt soreness is worse since they drew the fluid out a couple of days ago.

The doctor also gave us a pep talk, told Leif that he's looking good, and that the whole team is really pulling for him. After a trying few days, it was nice to hear some rah-rah-rah. Now Leif's winding down to an audio book of our old favorite, Mrs. Frisby and the Rats of NIMH.

One answer and many questions

Posted by Becky

Today was a day with one answer and many questions. The answer is, the new bug in his bloodstream is Klebsiella pneumoniae, a gut bacteria. I'm not linking to the wikipedia entry, because that's mostly about how dire it is to have multi-drug resistant Klebsiella in your lungs, and Leif does not have it in his lungs, just his butt and his bloodstream. The "flavor" of microbe Leif has is resistant to Zosyn, but they expect it to respond to the doripenem. Doripenem also covers the other enterobacter (gut bacteria) that caused the infection of Dec. 26.

The concern now is his port. If the new blood cultures don't show the infection clearing, they will need to take his port out, because all the antibiotics in the world won't clear it up if there's a secondary infection in the port. Blood cultures over the next few days will guide the doctors in that decision.

Last night's nurse told us the blood bank did find that Leif has antibodies to some blood proteins, so they're doing additional screening on his blood now before transfusions. The screened blood should give Leif a better boost from each transfusion than he's been getting lately.

Leif got an ultrasound this morning on the painful knot-like spot on his back. Over the last couple of days, he's gotten a round lump there, not like a muscle knot, and it and the skin around it is rather red. The ultrasound showed there's something there, but not much information on what it could be. It doesn't look like fluid. The Infectious Disease team would like a biopsy; their concern is that it might be fungal. The Infectious Disease doctor who met with us today notes that it's a weird place to spontaneously develop an abscess, so she thinks it's less likely to be this same Klebsiella infection. She doesn't think it's lymphoma or a drug rash. She contacted the dermatology department to come take a look and do a biopsy.

Leif went out for a short walk about 3:45, and while he was doing some gentle stretching, he felt and heard a "pop," the muscle tension around that spot released, he felt increased blood flow into his arm on that side, and the pain level dropped. The swelling is still there, and it's still sore to the touch, but less so.

Late this afternoon, a guy from Dermatology stopped by and looked at the spot, poked and prodded it some more. He and one of the higher-up Dermatology docs decided that it's too deep under the skin to be a good candidate for the type of biopsy they would do. Also, Leif's platelets are low. They therefore recommended that someone load Leif up on platelets, and have General Surgery do the biopsy instead. They opined that it does not look fungal to them, and thought it was likely to be an infection that isn't forming a fluid-filled abscess because Leif's white blood cell count is so low (as happened with his butt the first time it got infected), or possibly a cyst. They feel like since the pain is less, maybe it's responding to the antibiotic Leif is on, and that the swelling will take time to resolve.

So, who knows. Meanwhile, the day was so busy that Leif did not get to nap at all. He's taking his third and probably final sitz bath of the day now and hopes to go to bed for the night shortly (6:30 pm). The nurses will need to come in and switch out his antibiotic and give him some blood, but he can somewhat sleep through those activities. He was able to eat a small breakfast, a nearly-normal size lunch, and a decent size dinner today, after two days of only having the stomach for two meals per day. He also got more activity today; although he doesn't hurt if he sits still, and hurts quite a bit if he moves around, he went for a couple of short walks today and spent more time moving around the room, doing personal maintenance and also playing with his fun new remote-controlled helicopter. He continues to feel a lot of soreness in his legs and butt. The leg soreness feels like he ran a long distance without training for it first.

Leif punked one of the nurses pretty well today. She was giving him a bunch of big yellow potassium pills, and one landed on the floor. When she went out to get another one, he slipped a nearly identical-looking yellow M&M into the pill cup. She was perplexed by the new pill, until she saw him grinning. It sounds like that story has made the rounds, out in the pod.

The attending physician (main hematology doctor) switched out today. The new doc assigned to Leif is one he's had before, who tends to do his rounds quite late in the evening. I was hoping to go back to the apartment after work today to take a shower and switch out the clothes in my overnight bag. But I have questions for the attending (about the leg cramps, and an explanation for some new minerals and vitamins Leif started getting today -- maybe they are related?), and after a pain-filled day that included discussion of port removal, peripheral IVs, and needle biopsies, with no naps, Leif is much too tired to ask questions or grasp answers. So it looks like I'll be staying here this evening, unless by some miracle the attending shows up before 9:00.

New antibiotic

Posted by Becky

The doctors have switched out the Zosyn Leif has been getting for a new antibiotic, doripenem.

Some of the interns also came by to discuss Leif's shoulder blade pain. He has a very sore spot that we've been thinking is a pulled muscle or other knot-type pain source near his right shoulder blade. It's been really bothering him, and that combined with his sore butt makes it hard for him to get up out of bed and move around much, since he can't compensate for soreness in the one area by leaning on the other area. And of course, staying as active as possible is important. It sounds like they are going to do an ultrasound tomorrow, to see if the knot is possibly fluid buildup.  

Low-grade fever

Posted by Becky

Leif has had a low-grade fever off and on, last night and this morning. The nurses have been giving him Tylenol to keep it somewhat suppressed. He's up and about, but not feeling too great, still has a fairly high pulse rate and feeling headachey. He was able to get a pretty good night's sleep last night. They're experimenting with a new pain management approach; a low dose of fentanyl seems to help more with the low-level "crappy" feeling than the morphine or oxycodone do; those two drugs seem to help more with sharp pain from a definite source. If small doses of IV fentanyl continue to work well, they can put him on a patch that releases small amounts over the course of several days. Fentanyl is a strong painkiller and can make a person loopy, so Leif will work with the Palliative Care team to work out the details.

The doctors are now pretty sure that he's just dealing with one infection, the source of which is his bottom. They believe that removing (aspirating) the purulent fluid from his bottom yesterday helped remove the source of infection. The blood cultures and the aspirate are both growing the same microbe, bacteria that can be generally described as gram-negative rods. They hope to have a more definite identification later today, at which point they'll talk with Infectious Disease about whether to change or add any antibiotics. Meanwhile, the take-home is that the bacteria in his blood is being seeded by the infection in his bottom and causing the fevers. It looks like the trend of his fevers is downward, so if Infectious Disease thinks he's on the right antibiotics, they may watchfully wait and expect the downward trend to continue.

He's getting a unit of platelets this morning; they're still trying to keep his platelets at a higher level because of the fevers. The unit of blood he got yesterday evening bumped his hemoglobin level up one point, and it held steady through this morning. They will check it again later this morning, but as of now he's not scheduled to get any blood today.