We have door #2

Posted by Becky

Leif's nurse came in and told us that she doesn't have to draw labs to send for blood typing (to ID proteins responsible for transfusion reactions), because the cultures came back with a definite ID of the microbe that the doctors now believe is causing his fevers. So they might change up his antibiotics, although he's getting pretty broad spectrum coverage already. Concern about transfusion reactions is off the table for now. Leif got a good nap this afternoon, and had an appetite for dinner -- salmon with miso sauce, carrots, and lemon meringue pie.

His fever popped up for a bit this afternoon, but is back down now. His pain levels are less, and he's feeling better, although his heart rate still gets into the low triple digits when he moves around much. His facial hair, which had grown in nicely, started falling out in earnest a couple of hours ago.

Good night to all, and we both wish you a happy 2013.  

Tests done for the day, we hope

Posted by Becky

This morning Leif got a CT scan of his backside. There was a small amount of fluid in there, and a surgeon was able to draw it out with a needle; there wasn't much, but enough to culture and make sure they are properly targeting the antibiotics. He also got the routine chest xray due to last night's fever.

Leif's parents drove out to visit him today, so he got to see them a little bit, although the new tests were all begun right after they arrived, so they had to spend a lot of their visit waiting for him to come back from the tests.

More fever, tests today

Posted by Becky

Sunday morning we thought Leif was in for a quiet day, but we were mistaken. The attending hematology doctor for this week, Dr. Danilov, came in to discuss why he wanted Leif to get a CT scan of his abdomen and pelvis. The last one he got was over a month ago, and they wanted to make sure there isn't a hidden bleed in his belly due to the low platelets. His red blood counts are staying low despite the transfusions. The results of the CT came through late last night or early this morning, and do not show any bleeding.

They decided to give him the CT contrast solution via IV rather than in a beverage, which Leif was glad about since that stuff is gross to drink. They can give it IV if his kidneys are in good shape.

Unfortunately, after the CT, his port was clogged, and his temperature started going up. Although everyone's immediate concern was that his port had gotten infected, it appears that the CT people had not flushed it properly after infusing the contrast solution; Leif's nurse was able to get it working again. But, all that messing around with his port made it sore and left Leif feeling pretty beat up, not to mention feeling bad because of the fever. He also got severe cramps in his calves and what felt like gas or stomach pain (not on the spleen side); nobody knows why. I had gone back to the apartment for the afternoon, and returned to a sad and sorry Leif.

Overnight, his fever spiked to 102 degrees F (38.8 C), and his heart rate was also very high. At one point when he stood up to go to the bathroom, his pulse got up to 160 beats per minute and brought a nurse running (he was hooked up to a pulse and oxygen monitor). For much of the night it ranged between 130 and 140. He had some belly pain that came and went, and felt headachey. It was a busy night with nurses and doctors coming in to check on things and ask vague questions that were confusing to Leif in his sleepy, feverish state.

This morning Leif's temperature was down to 98.8 F (37.1 C) and his pain was a bit better, though now he has a gigantic muscle knot in his back. His leg cramps have eased, though the muscles are sore from having been cramped. He didn't think he was hungry. But a fabulous nursing assistant that Leif has made friends with brought him a loaf of fresh home-made bread this morning, and he happily ate three slices with peanut butter. As he was finishing up the third slice of bread, the colorectal surgeon, Dr. Holubar, stopped in to tell Leif they were putting a stop on his eating and drinking for the day so they could do another MRI and then, if necessary, drain any abscess they find in his backside. He said that yesterday's CT showed a small accumulation of fluid somewhere in there, and he'd like to check it out more thoroughly, since he thinks that Leif's bottom is the most likely source of any new infection, possibly an abscess deep enough that it's not showing symptoms on the surface (where the signs are that things are improving).

After his bread, Leif had the energy to do a sitz bath, wash up, and change out of his sweaty clothes. The nursing assistant changed his sheets while he was doing that, and now he's sleeping soundly while getting some platelets. As long as he has a fever, they will keep his platelet levels over 10; they keep them over 5 when his temperature is normal. After the platelets are done, they'll give him some more red blood cells. He also got a unit of blood very early this morning (around 4am, if my memory serves me -  I woke up when it was almost finished).

Dr. Danilov and the new fellow, Dr. Mody, came in just now and outlined the plan of investigation. They think the two most likely possibilities for the fever are:

• A transfusion reaction. This would be caused if Leif's body has started reacting to certain proteins in the blood products he's been getting. His fevers are somewhat synchronized with receiving blood products; therefore, they could be an immune response to the transfusions. A sign this may be the case is that his bilirubin levels are elevated, an indicator of hemolysis, which is the breakdown of red blood cells. Another sign this might be the case is that although they have given him a lot of transfusions, his red blood cell levels are staying the same or dropping, indicating that his body could be destroying the new red blood cells as quickly as they get transfused. The doctors will work with the blood bank to determine which proteins could be causing the transfusion reaction, and then Leif will only get blood that has been screened for those proteins.
• An infection (presumably in his bottom) that has become resistant to the antibiotics Leif's been on, necessitating a change in antibiotics.

I'll try to keep everyone posted as the day goes on.

No new fevers

Posted by Becky

Thursday afternoon, the surgeon came by to check on Leif's butt. Other than the infection, he was pleased and enthusiastic about the amount of healing that has taken place. After Leif got a slug of fentanyl (strong painkiller), he drained a very small amount of pus, all he thought was likely to be in there due to Leif's neutropenia, and drew a line around the reddened area, so any changes would be noticeable. A resident came by later that evening to check it again, and the amount of redness was about the same. Leif got an MRI, to help decide whether the infection needed to be drained/cleaned up surgically, although the surgeon suspected that would not be necessary. By Thursday evening, Leif was feeling quite a bit better, sitting up and chatting. He enjoyed a big dinner, saved from Christmas.

On Friday, they drew a bunch more blood cultures, because the positive culture (of gram-negative bacteria) had been drawn from Leif's port. They always keep a sharp eye on anything that might indicate an infected port. The infectious disease doc came in and checked Leif's port for pain or any other sign of infection, and thought it looked good. He says that he thinks Leif quickly cleared the bloodstream infection, which likely originated from his troublesome butt, but could have originated from his port; at any rate, they will continue at least two weeks of IV antibiotics (Zosyn and Daptomycin) and do the aforementioned blood cultures.

Two infectious disease doctors visited again in the afternoon. Leif's bottom was hurting less, and the MRI did not show anything concerning, other than the inflammation we already knew about, so everyone agreed there was no need for surgery. They will give him a lot of antibiotics and watch and see what time brings, both in terms of an abscess and the blood cultures. The whole episode was not super-surprising based on Leif's suppressed immune system, but the infectious disease team will continue to watch Leif closely for the next few days. The fact that he hasn't had trouble with his port (clogging or anything like that) is one indicator that the bug in his bloodstream was more likely to have come from his bottom than his port.

Friday afternoon Leif got his second dose of Rituxan for this chemo cycle. In the middle of the dose, he had a sudden onset of severe pain in his abdomen, a feeling like a rash in his mouth, and sudden rawness in his throat. They stopped the Rituxan, gave him a dose of IV painkiller, and monitored him carefully. His vital signs (blood pressure, temperature, heart rate) were fine. The doctors discussed doing an xray of his belly to check for trouble there; but in an hour or two, Leif's pain simmered back down, his vital signs continued to look good, and they decided to restart the Rituxan. This was unlike either a classic Rituxan reaction, or Leif's previous Rituxan reactions. Leif was getting Reiki when the pain started; could this have been a side effect of that? There's no telling. At any rate, by the time the Rituxan dose was over, Leif was sitting up working on his computer, he was able to "pick away" at his dinner until the entire thing was gone, and his pain and energy levels were back to baseline for this week.

He looked so good, I decided to go back to the apartment for a good night's sleep and a shower, and did laundry and ran some errands this morning. The snowfall here has been crazy - we're getting a ton of really nice fluffy snow, and the weather is staying cold (high teens, low twenties) so the snow is piling up. It's gorgeous, although it makes for some slow traffic. Our new car and new snow tires are handling the messy roads great. I've been leaving the car in the parking garage, even though it's about a 10-minute walk through DHMC from the garage to Leif's room, because I'd rather spend 20 minutes walking to and from the car than 10 minutes digging the car out of a foot of snow.

Leif got two units of red blood cells today, and went for his usual walk. When I got here about 2:30, he was listening to music while getting his blood, and since then he's been napping. I expect that once the blood kicks in, he'll feel a bit more lively.

Fever last night, new antibiotics today

Posted by Becky

As was more or less expected based on yesterday's bottom soreness and elevated heart rate, Leif spiked a fever last night. They added an antibiotic - Zosyn - based on its broad-spectrum coverage. The blood cultures they took yesterday indicate that they're dealing with gram-negative bacteria. Leif's bottom, where the surgery was, has been more sore and red today and yesterday. The Infectious Disease doctor we've been seeing, Dr. Aoyagi, came by and checked things out, and said that he thinks Leif's on the appropriate antibiotic. He'll be bringing an ID doctor who specializes in immunosuppressed patients by to see Leif, later this afternoon.

His temperature was back down to normal by this morning, but he was feeling pretty wrung out. He got a unit of platelets and one of blood, after which he felt enough better to get up, eat breakfast, and take a sitz bath. Then he lay down and listened to a book on tape until someone came to take him away for a chest xray. That's routine, to check for lung problems anytime he gets a fever.

He just came back from the chest xray, and is feeling energetic enough to investigate why he hasn't gotten a spinach frittata for breakfast yet during this stay (answer - he was on a low phosphorous diet last Frittatta Day). I promised him that if they didn't bring a frittata by Saturday, I'll make him one.

Not much to report

Posted by Becky

We had a good Christmas, though geographically circumscribed by the 4 walls of DHMC. My parents flew up from Texas, so we got to see them over the last few days. They had to leave a bit earlier than planned, switching to an earlier flight before an approaching snowtorm hits Boston. The hospital kitchen made a not-at-all-bad Christmas dinner for patients and their guests, so we had roast beef and pumpkin Bundt cake. More importantly, we talked with a good number of friends and family on the phone. On Christmas Day, Leif got a small refrigerator delivered to his room; the hospital has a few dorm-size fridges that are available to patients who request them. This should make our lives easier. No more scrambles to re-date-label the cheese and half-and-half before the nutrition team throws them away, and Leif can get a midnight yogurt snack without masking up to leave the room. We have a second set of Christmas dinners stashed in the new fridge, made by Prue's friends Richard and Pierre. Those are on the menu for tomorrow's lunch.

Leif's still holding up well; no fever or infection so far. This is Day 10 of this chemo round. He has another dose of Rituxan scheduled on Day 12. Typically on this regimen, patients' blood counts start coming up around Day 21. However, Leif's blood counts have not come up as quickly as the average patient's. All of which is to say, these are still early days for this chemo round, but so far, so good.

He did get a unit of blood this morning. Since his spleen soaks up the blood products they give him, rather than giving red blood cells based on his hemoglobin numbers, they're going to give them based on his symptoms. They will still give platelets based on his numbers. This morning he felt extra tired and had a slight headache, which the blood transfusion dispelled. So now he knows what symptoms to check for. His fatigue is increasing on a daily basis, which is to be expected. He took a decent walk just now, which is the best way he has found to combat the feelings of fatigue and general crappiness that accompany chemotherapy.

Done with chemo for a while

Posted by Becky

Leif's done with chemo until Day 12 (this is Day 6) when he gets one more dose of Rituxan.

This morning Leif found more precipitate in his etoposide line. He'd been checking it pretty compulsively since the snafu on Thursday. The line was clear when he checked it at 6am, but contained precipitate around 9am. The nurse stopped his drip and called the IV team, and the IV nurse tried changing the cap and flushing the line with no luck; the new PICC line, that he got Thursday afternoon, needed to come out. She kindly waited until they were able to get Leif his sedative, but it was still a stressful procedure for him. He doesn't need a new PICC for now; they can use his port, since he's done with his chemo regimen and is unlikely to need a large number of things infusing at once, like he has been getting. 

Since he'd gotten some extra etoposide from a new bag on Thursday before they decided it was OK to stop the infusion until his PICC was changed out, and there was a roughly equivalent amount left in the bag (his final bag) when they stopped it this morning, the doctor decided it was safe to call the entire dose done when the precipitate turned up.

The pharmacists said that the etoposide that precipitated was from the same manufacturing lot # as the doses Leif had received without problems for the previous 3 days. There is still no answer as to why this problem has cropped up. The pharmacy & nurses changed their procedures after Thurday, to mix the dose within an hour of starting to infuse it, so it won't sit for longer than 13 or 14 hours total (it's supposed to be stable for 24 hours); that was the case with this latest batch that precipitated. We were told that DHMC will probably infuse etoposide in 6-hour increments instead of 12-hour increments from now on, to prevent this from happening to other patients. Switching the infusion from a PICC line to an IV (which would obviate needing to remove an entire PICC in case of problems) was not an option, because etoposide is hard on the veins; it needs to go into a central line with a high volume of blood flow. And of course, they didn't want to risk gunking up Leif's port, which is more invasive to remove than a PICC.

After the PICC removal, Leif's mom, brother, and sister-in-law came in to visit him, after driving over from Maine last night. That was a nice way for him to relax and recover, seeing them one at a time since he's been getting fatigued easily. It was great to see them. He wasn't able to see much of his nephews since preschoolers are such active little germ vectors, but he at least got to say hi to them. Since he had company today, I spent a lot of the day out of the hospital doing a little shopping, eating good meals, and visiting my aunt. I'm staying at the apartment tonight, with a mystery book and a long winter's nap on the agenda.

Leif was looking good when I left. They've stopped the IV fluids, so the puffiness should start going down. The expectation is that his blood counts will continue to decrease from here on out, so they'll be giving him transfusions as necessary and monitoring him closely for infections. Nearly all patients on this regimen get infections because their neutrophil count goes to zero for so long that normally-benign microbes, already existing in their bodies, get out of hand. So the team will be watching Leif closely and treating whatever flares up. He's already on a lot of antibiotics, some prophylactic and others targeted toward the microbes that had been infecting his abscess. The surgery site continues to look okay; it's no longer oozing at all, and he is diligently taking sitz baths four times a day until the surgery team tells him it's okay to cut back.

A day full of argh, or all's well that ends well but some uneventful days would be nice

Posted by Becky

So far this round of chemo is going okay. Leif has nausea and loss of appetite, and needed a unit of blood today and yesterday. His neutrophil count is still good, thanks I suspect to last week's Neupogen shots.

Today an alert nurse started to disconnect one of Leif's IV lines at the end of a chemo dose, and saw that there were little crystals of white crud inside the line. She stopped the IV, didn't flush the line, and called in another nurse. They checked further, and there was some of the same stuff in the line he was getting blood through, too. Much discussion ensued, involving the IV team, hematologists, pharmacists, and nurses.

What they think happened is that one of his chemo drugs, etoposide, precipitated out of its solution. Etoposide has a tendency to do that at concentrations higher than 0.4 mg/mL, and Leif's doses are mixed at 0.395 mg/mL. The pharmacy follows the recommended protocols; the doses are supposed to be good for 24 hours, and they make 12-hour doses within the correct time window, but for some reason (manufacturing problem?) this batch precipitated under these conditions, sometime near the end of the dose. The nurses told us this issue hadn't been seen with etoposide at DHMC for quite a long time, but it isn't unheard of. This is a drug that he gets 24 hours a day for 4 days.

Anyway, the nurses had hung the next bag of etoposide on a different line in the meantime, because the initial reaction of the doctors was that it was important not to stop his chemo. They switched the blood transfusion to his trusty port, and ran the etoposide through a line on his PICC that had only been used for normal saline and didn't show any precipitate. Then the IV team weighed in, and expressed their concern that there could be more precipitate in the ~9 to 20 inches of the PICC that are inside Leif; so they stopped everything going through the PICC until it could be replaced. More conferencing. Finally his doctor came in and gave us the plan; once his blood transfusion was done, they would remove his PICC line and put in another one, then resume his chemo, fluids, etc. 

Fortunately the nurses did a good job giving him enough sedatives that he was OK through the process of putting the new line in. They had to put it in his left arm because he's had two in his right arm recently, and they need to give that side a rest. They didn't remove the old line, which they can do in his hospital room, for several more hours - the IV team was short-staffed today and very busy. As long as it was still in place, the idea of a PICC line in his vein that was full of crud was quite stressful for Leif; the sedatives were wearing off, he was experiencing extra nausea, and he had missed a couple of naps. Right about then, the awesome Mike Aaron called and distracted him for a while, which was the best medicine we could have asked for.

The doctor let us know that she doesn't think the precipitate is going to hurt him. Also, pausing the chemo for 6-8 hours is not going to be a problem. It will just run that much longer at the end of his dosing period. Only if they had to pause it for a couple of days would the effectiveness of the chemo be reduced.

Another new, fun thing Leif is discovering, as of Tuesday, is life as a diabetic. The dexamethasone steroid that they give him with his cytarabine chemo can trigger diabetes. They test his blood sugar 4 times a day, and give him insulin when necessary. Because, you know, the guy didn't have enough needles in his life.

His phosphorous levels are also high, which is caused by the lymphoma cells dying off quickly and creating a lot of crud for his kidneys to clear out of his bloodstream at once. He's been getting medication to protect his kidneys from this process (called tumor lysis) including a phosphorous binder, rasburicase (a synthetic enzyme that breaks down uric acid), allopurinol (which prevents uric acid formation), and calcium supplements, since in trying to get rid of the excess phosphorus, the body uses up a lot of calcium. They also give him lots and lots of IV fluids, and a diuretic to help flush them all out. The fluids make him look a bit puffy, but he doesn't have severe edema (swelling) in his legs like he's had in hospital visits past. He's once again wearing a sequential compression device (SCD), that inflates and deflates a pair of fancy white tyvek leg warmers.

A tall nurse helped me replace the ticking clock with our silent analog clock from home. Leif is finally getting some sleep, with music playing in his headphones. It's pretty quiet in here with only the heating pad (for his back), SCD, and a single IV pump running. His neighbors remain quiet, too, although they've changed out on either side.

Admitted to a not-pink room at DHMC

Posted by Becky
Leif's been admitted to a room at DHMC and is scheduled to start his chemotherapy at 9pm. It's 10pm now, and the pharmacy hasn't sent it up yet, so we're clearly on hospital time. So far, his nurses and aides are all ones he's had before, which is nice. They like how he looks with facial hair. (Me too.)

His phone # is 603-650-2108. You can call between about 8am to 7pm; if he's asleep or occupied, he won't answer.

His first appointment was to get cleared by the surgeon for chemo. Ordinarily they'd want to wait longer, but we're trying to balance healing with Leif's need to get back on chemotherapy, and Leif appears to be healing up well. Then we met with Dr. Meehan. Leif's spleen has enlarged from where it was earlier in his recovery from this chemo round, and that plus the suppressed blood count implies that the lymphoma is still pretty active. He briefly considered putting Leif on a different chemo regimen, but after doing some calculations, decided to stick with the same one as last time after all. The plan is still to go straight to transplant from this chemo round; whether a full or mini transplant will depend on how Leif tolerates this chemo. Dr. Meehan is concerned about the toxicities involved with a full transplant. However, that's a decision for another day.

His heart test and pulmonary test fell within acceptable parameters for transplant. There is some work the dentist would like to do (one deep cavity, wisdom teeth removal) but that is a lower priority/risk than the lymphoma or the former abscess site.

Then it was out to the infusion center to get a blood draw. Once the labs came back, they tanked him up with some platelets so they could put a PICC line in. The transplant coordinator walked us to the department to get the PICC line; since Leif hadn't officially been admitted yet and therefore was operating as an outpatient, there was no friendly aide to wheel him off to the correct location. I'm glad she helped, because we had to go to three different places before we found the right one. Also because of the outpatient issue, the PICC line staff hadn't received the orders to give Leif a sedative first due to his needle phobia. Having one of these put in is particularly stressful for him, since it's a long needle that goes in quite a ways, and part of his phobia is anxiety that a needle will break off underneath his skin (he knows that's not rational ... thus the term phobia). Anyway, that was a stressful experience, and he got lots of apologies and a slug of Ativan afterwards. By this time it was about 5pm; we went back to the infusion suite to wait until his room was ready, and then got moved in.

His room is peach colored, not pink, which is a relief. It seems to be in a relatively peaceful location, with quiet neighbors, near where he was before. Fortunately I think Leif is designated to always get private rooms, due to the expectation that he will soon be neutropenic (low white blood cell counts). The clock ticks loudly, though; I need to bring in our silent clock from home since ticking clocks make it difficult for Leif to sleep or concentrate.

I'll be staying here with Leif tonight; they brought in a cot for me, and we got all the furniture rearranged to suit our preferences. There was a nice snowstorm last night, and the drive into the hospital was quite pretty.

Doctor visits this week

Posted by Becky

So today is a week of waiting while Leif heals up from Friday's surgery. The plan is to have the surgeon check the site on Monday morning, and if he gives the OK, admit Leif immediatly afterward and start chemo that afternoon. He'll be getting the same high Ara-C, Etoposide, and Rituxan regimen as last time. It's stressful to wait a week since he needs to get back on chemo pronto, but the surgeon was adamant about giving him time to heal at least until next Monday.

At yesterday's clinic visit, Leif's blood counts were down. This could be due to infection (although there are no other signs of that), the antibiotics he's taking, or the disease. They'll do another bone marrow biopsy next Tuesday after he's in the hospital. If they did a biopsy now, the results wouldn't be back by Monday anyway, so they will not hold off on chemo. In the meantime, he got some platelets today to help with clotting at his surgical site.

The other thing going on this week is getting as much of the pre-transplant workup done as possible, since we're not expecting any free time between this round of chemo and the transplant. This morning Leif got a dental exam and a pulmonary function test, both of which look okay, and got some paperwork out of the way. Tomorrow he's getting an ECG and chest Xray. He's also been getting Neupogen shots, to keep his neutrophil count up to prevent infection at the surgical site while it heals.

Our expectation is that Leif will be admitted to the hospital on Monday for chemo and recovery from that, which will take about six weeks, and then immediately begin the transplant process, which will take at least another four weeks.

Done with surgery, went well

Posted by Becky

Leif is out of surgery. I haven't seen him yet, but I spoke to the surgeon. Once he got a good look at what was going on, the plan changed. The possible fissure was not a fissure after all. Instead, the surgeon found a small "zit" type gland/opening, with a fistula (tunnel) going to the former abscess incision site. Rather than put in a Seton drain, he decided to cut the fistula to the outside of Leif's skin, and make a small cut in the muscle that was creating the tighness. He spoke with Dr. Meehan from the operating roomm, and feels that this is a better solution to get Leif ready for the bone marrow transplant. This is a "definitinve" treatment, not a stop-gap measure. Once it has healed, it should not need any further treatment.

This surgery will need at least a week to heal before Leif can get chemo; we'll see this doctor again Monday morning (he's coming in from vacation to see Leif) and again the Monday afterwards. In the meantime, lots of antibiotics and sitz baths to keep the incision clean and healing. The incision did not bleed excessively; Leif didn't need any platelets during the procedure. His platelets are low, but I guess the ones he has are champs.

New surgery today

Posted by Becky
Yesterday's ultrasound did not identify any pus buildup or fistulas in the area of Leif's butt that's been infected. However, the surgeon did see an anal fissure, and he strongly suspects that it has formed a fistula, which is an open tube going away from the fissure toward the former abscess site. This combination is a serious infection risk when Leif gets more chemo.

There isn't time before Leif needs chemotherapy to do the surgery that would allow the fissure to heal up. The colorectal surgeon and transplant specialist discussed the options last night, have decided that the best course of action is to put in a Seton drain. This is a small, soft tube that will loop through the fistula and out of the body. Think of a hoop earring, in a very unglamorous location.

So, today the doctor is putting that in. The surgery is scheduled for about 3:00 today; Leif's in the patient prep room now. We have no word on how long this will delay Leif's next chemo treatment, although he can't wait for long.

Since Leif had to fast today prior to anaesthesia, he stayed up rather late last night eating all the healthy leftovers in the fridge before the midnight deadline, in order to keep his weight and energy levels up. Then he slept for most of this morning. Although the surgery and risk of infection are stressful, to say the least, his energy level on the way into the hospital today was pretty good. He was walking close to his "normal" pace - i.e. faster than me.

Doctor Visits Today

Posted by Becky
Today Leif saw a lot of doctors. And yes, they all wanted to look at his butt. He wore his "It's all fun and games until the flying monkeys attack" t-shirt (thanks, Karen!). By this metric, oncologists have better senses of humor than Infectious Disease or Surgery specialists. On the other hand, maybe that's just because we saw the oncologists later in the day.

We started with Infectious Disease. The chief doc there is overall pleased with how Leif is healing up, but concerned about a "boggy" spot near the former abscess. He'd like to do an ultrasound, and maybe a sigmoidoscopy, to check whether there is a spot of fluid buildup or a fistula (pathway for infection to enter) that could be of concern once Leif starts chemotherapy and his neutrophil levels plummet again.

After a drive-by blood draw in Oncology, we visited the Surgery department where Leif met with a nurse practitioner. She did the requisite surgeon's Q-tip jab in all the tender spots, and told Leif she'd talk with Dr. Meehan. Then I took Leif home for a nap, and late in the afternoon we went back to DHMC to meet with Dr. Meehan. He thinks that Leif is in good enough condition to start the next round of chemotherapy. He's trying to get an ultrasound scheduled for Leif tomorrow, and wants to start chemo as soon as possible after evaluating the results. He's on board with doing a sigmoidoscopy, but doesn't want to wait if it takes too long to schedule.

In general, Leif does not feel like his energy level is as high as it was in October before he went into the hospital for the last stay. But, Dr. Meehan feels that he's strong enough, and there's a need to kick the lymphoma while it's down. So we're still thinking that he'll be admitted for the next round of chemo on either Friday or Monday.

December/January Treatment Plan

Posted by Becky
I apologize for the long silence - Leif and I have been enjoying some much-appreciated time off from hospitals, doctors, and blogging. Leif's been getting a little bit stronger every day, going for a daily 40 minute walk, eating as much good healthy food as he can, and getting plenty of rest. He's been reading and working on a few little projects, but feeling pretty fatigued.

Last Wednesday, we had a meeting with Dr. Meehan, the transplant specialist, about the plans for his upcoming treatment.

The goal is for Leif to get an allogenetic stem cell transplant; that means they will give him a new immune system in the form of bone marrow stem cells from a healthy adult volunteer donor. A donor has been identified and is in the process of going through qualification. They are also contacting additional potential donors as backups. The transplant coordinator has assured us that there are plenty of good (ten-out-of-ten) matches for Leif in the donor database.

Before transplant, though, Dr. Meehan thinks Leif needs some more chemo. He tolerated the most recent chemo regimen, which is nearly transplant-level chemo in terms of its strength, relatively well. The recent biopsy showed that Leif's marrow had a "great" response, but there is still mantle cell lymphoma present, so they'd like to hit it again. 

The CAT scan taken the week previously showed that his spleen and enlarged nodes are about the same size as before. During the physical exam, it looked like his spleen had gotten smaller since the CAT scan.

The plan is to give Leif the same chemo regimen as before. It would be ideal to give him a different regimen, but they're running out of regimens. In Dr. Meehan's experience, patients do relatively well if they're given this regimen twice, so he's comfortable doing it again.

Leif's experience with this chemo regimen is that it's not super bad while he's getting it; the nausea and neurological effects are not as bad as some other regimens he's gotten. The challenge is that afterwards, it takes his body a long time to recover, during which time he's susceptible to infection, bleeding, etc. However, the doctors believe that the benefits of this second round of strong chemo outweigh the risks.

The confounding issue is the wound where Leif had the abscess; they only want to give him this chemo once it's as healed as possible. They'll want to start the chemo as soon as it's safe to do so, though. Leif has a meeting with three sets of doctors (Infectious Disease, Surgery, and Hematology Oncology) on Wednesday, when they will evaluate how he looks and decide when to admit him for the next chemo round, possibly by the end of this week. He's still taking antibiotics and cleaning the incision twice a day with a warm epsom-salts bath. A surgeon checked it on Friday and was pleased with how it looks. He also gave Leif a nice compliment. Leif commented that he needs the abscess to heal because he's going to be getting more chemo soon, and the surgeon did a double-take and said, "I didn't know you had cancer - I thought you were just going for the bald look!" I appreciate that Leif is looking pretty good, although I think that doctor should spend a little more time with patients' charts before seeing them.

After the next round of chemo, Leif will get the transplant. Timing will depend on how the next round of chemo goes. If things are stable and they can give Leif a 2-week mental-health break before the transplant, they will. But, they won't compromise his outcome to do so; so if the next hospital stay runs long, Leif may wind up staying as an inpatient until after the transplant.

There are two types of allogenetic transplants that they will choose between, when they review how Leif is doing after this next chemo round.

• A full transplant is more challenging up-front. If they go that route, they'll give Leif enough chemotherapy and radiation to completely obliterate his bone marrow, then infuse the donor cells. The chemo and radiation have some intense side effects including mucositis (injury to the inside of his GI tract, basically; sometimes this is so severe that they need to administer IV hydration), high risk for infection, and the need for platelet and blood transfusions. The entire transplant procedure will involve about 4 weeks in the hospital.
• A reduced intensity transplant (also called a mini transplant) involves gentler chemotherapy and radiation to start with, just enough to suppress his immune system. Then they infuse the donor cells, and basically let the donor immune system do a cleanup of his remaining immune cells. They will choose this option if they're concerned about Leif's ability to tolerate the severe chemo involved in a full transplant. The chemo and radiation for a reduced-intensity transplant are so gentle that they are sometimes given during outpatient visits instead of in the hospital. The donor stem cells take over the bone marrow space, and doctors rely on the new immune system to take out the remaining cancer cells via what is called a graft vs. disease effect. A healthy immune system normally recognizes cancer cells and destroys them. So in a reduced-intensity transplant, instead of taking out the cancer with chemotherapy and "rescuing" the patient with a donor immune system, they give the patient a donor immune system and rely on it to take out the cancer.

Again, they will make a decision between these options after the next round of chemotherapy, based on which approach has the best risk vs. beneft ratio based on Leif's health at that time.

After meeting with Dr. Meehan, we met with the transplant coordinator again. She updated us on the donor status, and told us that they're rescheduling stem cell collection for the early/mid January timeframe.

She gave us a little information about what to expect from the transplant. We're not looking too far ahead into the future, since we don't want to get overwhelmed. But, the doctors recommend that we stay in the area for the first 100 days post-transplant. The reason is that after Leif gets out of the hospital, the transplant team will want to see him for a full day once a week during that time period. If we go back to Maine, we'd be looking at a full day in the hospital, with 3.5 hours of driving time (early and late, through the mountains, in the winter) on each end, every week. We think that it will be healthier to stay here rather than doing all that driving during a time when Leif will probably not be feeling great. At any rate, we'll stay here at least until mid-March, and then start thinking about transitioning home (or, rather, to Brunswick) depending on how Leif is doing at that time.

Out of the hospital!

Posted by Becky

On Friday, Leif's neutrophil count was 920! We credit Steph and Prue's duck dinner; the doctors credit their Neupogen shot. At any rate, they started making noises about letting Leif out of the hospital; the low neutrophil count was the main factor keeping him in. So they started coordinating amongst the many specialists, scheduling doctor's appointments, etc. On Saturday morning at 10am Leif got the news that his neutrophil count was up to 1280 (1500 is normal), and by 1pm he was on the way home!

We stopped to pick up 10 prescriptions, had some lunch at the apartment, then drove to Brunswick last night. We're here visiting Leif's parents and his nephews. His brother and sister-in-law will arrive later this morning, and this afternoon we're on our way to Belfast. We have to be back at DHMC on Wednesday, when Leif has a doctor's appointment and a PET scan, and they'll discuss the plan for the next step of treatment.

Even though it's last-minute, we thought it was better to fit our trip to Maine in now, when Leif has three days free of doctor's appointments, rather than planning to go after his Wednesday appointments, when for all we know, the plan may involve starting more treatment immediately.

About a week ago the doctors gave me permission to leave the hospital for a couple hours to have Thanksgiving dinner at the apartment. Of course, during the intervening week, I have been very excited to get out of here, even for a little while and look at something other than pink walls while I eat institutional food. During the week the doctor team changed over and a different attending physician was in charge. At 11:00am, just as everything was set to go, the doctor team came in and Dr. Orstein, the Attending, sat down on my bed and told me that she was not going to give me permission to go. I was stunned because I thought that it had all been approved a week ago with the doctors, but each Attending really has to go with their own best judgement.

A couple of years ago I would have folded and been really hurt for the rest of the day, but I have been practicing negotiation skills, and I really put them to work. It certainly did not hurt to have my wife and nurse there, both close to tears that I could not go. I discussed the matter with the Attending for about half an hour, and at the end of the time, she grudgingly relented. I was out of there SO FAST before some other hitch came up.

Becky's sister, Stephanie, had come up for the holidays, which was so sweet of her, seeing as she has her own family now. She spent most of Wednesday and Thursday cooking the most amazing Thanksgiving dinner imaginable. We had roasted duck, mashed potatoes and rutabagas, brussels sprouts, cranberry sauce with orange and pecan, delicious stuffing, mincemeat pie, and my Aunt-in-law, Pru, brought those little onions with mushrooms, and blueberry pie. I could not believe how much food I ate, and it was all delicious. I am looking forward to leftovers today.

Today, whether from the neuprogen shot (which stimulates the growth of neutrophils) that I had yesterday, or my 3 hours of freedom and feasting, my neutrophils went from 240 yesterday to 940 today. 500 is the official number that they need to be for me to get out of here, so things are looking good. I still have the surgery that I am healing from, and I am not sure if they are going to keep me here until that heals, or whether they will just have me come in for Outpatient visits. My red blood cell count and platelet count are technically ok, but they are not all that. They are both just a little above the minimum needed before I get a transfusion, but again, that is something that can be done Outpatient. I am also on a lot of pills - painkillers, anti-nausea, anti-biotics, and some random ones. Some of them IV drip, so I am not sure what is going to happen there. When the team comes in today, we will see what they think. It would be pretty nice to be able to go "home" for a couple weeks or so.

When I get back from healing up, and building up some strength, then there will be a decision made on whether to have one more round of hard chemo to try to get rid of the remaining lymphoma in my bone marrow, or whether to go directly into my stem-cell transplant therapy. So, currently, no one knows what the next session will hold for me, or how long I will be here next time. If it is another round of Chemo, then I will be here about 4 to 6 weeks again. If it is the stem-cell transplant, then I will be here for more like 2 to 4 months. In some ways, I would rather get that over with sooner than later, spending winter inside seems a lot less onerous than spending spring inside, but I want to do whatever gives me the best chance over all, and I suspect that hard chemo, and then the stem cell transplant will be the way that they choose. If so, I will be out between March and May if everything goes well. 

Bone marrow biopsy results today

Posted by Becky

The results of yesterday's bone marrow biopsy are back. This morning, the doctors were concerned because Leif's spleen and lymph nodes had not shrunk, per the CT scan. However, the biopsy shows that the lymphoma in his marrow has decreased.

Normal bone marrow in a person Leif's age contains about 60% cells and 40% fat. In the biopsy last month, Leif's marrow was packed with lymphoma cells, about 90%. Now there are about 15-20% cells overall, which is better. There are spots of lymphoma cells (about 10%) but it's considerably improved. There are also normal-appearing early-stage cells, which shows that his healthy marrow is regenerating.

Now the doctors will circle up and have a discussion about what to do next. The question is, how little lymphoma do they want to see before going to transplant? They might want to do another round of chemo. I asked whether they are likely to use the same regimen as Leif just got; the doctor said that in light of the fact that the remaining cells appear to be resistant to that regimen, they could choose a different one instead.

In the immediate future, once Leif's neutrophil count hits 500 (it was 240 today) they want to give him a break from the hospital, to go home and recuperate physically and mentally for about a week before either getting more chemo or starting the transplant process, whichever comes next. They will likely make the final plan/decision while he's home. We'd like to go to Belfast and Brunswick at least briefly during that time so Leif can see as many friends & family as possible.

Leif's first question was, if they can get his bone marrow clean with more chemo, will they revisit the decision to use his own stem cells (called an autologous transplant) vs. donor cells (called an allogeneic transplant)? Naturally we are concerned about the risks associated with a donor transplant. The doctor said that while the risk of Graft vs. Host Disease is higher with donor cells, the risk of relapse (i.e. the cancer coming back) is higher using Leif's own cells. So those are the risks they will be weighing as they make a decision. As of now, they still plan on going for a donor transplant.

Busy Day

Posted by BeckyToday was really busy, starting at 7am with a bone marrow biopsy, continuing through a dressing change on Leif's surgical incison at 10, various antibiotics running at various times, doctor visits and a CT scan at 4pm. The pain from the incision is still pretty serious when Leif stands up. He doesn't have to get his incision re-packed after today, so that's a relief. He's been continuing to walk as much as he can, despite the pain, because it's important for him to maintain his conditioning. The docs agree that he isn't damaging anything in the incision by exercising.

His red blood cells and platelets have been basically stable but not really moving much. His neutrophil count has gone up a bit. In other words, there's a whole lot of waiting going on. No fevers, though. They have changed his antibiotics to target the bugs turning up in the cultured samples taken from his abscess. The idea is that the most targeted antibiotics will knock down the bad bugs, without unduly hurting populations of the good bugs.

The bone marrow biopsy and CT scan are to do a check on how Leif's disease has responded to the most recent chemo regimen, and to assist the doctors' decision-making going forward. There are a lot of options they are weighing, including going directly to (donor) stem cell transplant, or more chemotherapy. Sometime toward the middle of next week, they should have begun to formulate a plan.

In case they decide to go straight to transplant, the transplant team here at DHMC has identified a donor and is going through the process of evaluating him/her for safety (both the donor's safety and Leif's safety), suitability, etc. If this donor doesn't pan out, the database contains a good number of other potential matches, so there isn't any worry regarding being able to locate a suitable donor for Leif. Using his own stem cells is no longer an option due to the way his disease has been behaving.

If any of you between the ages of 18 and 44 have not signed up to be a bone marrow/blood stem cell donor yet, you can start the process right away at http://marrow.org/Join/Join_the_Registry.aspx. The need is especially great in the US for donors who belong to a racial/ethnic minority or are mixed-race. I signed up to be a donor a couple of years ago; they send you a kit, you rub a Q-tip on the inside of your cheek and mail it back to them, and then they contact you occasionally to make sure you're still available to donate. It's easy to do, and you could save somebody's life.

Sunday, no blood or platelets needed

One of the surgeons showed up this morning to re-pack my wound (formally, my abscess.) I took a couple of morphine pushes, but shoving cotton gauze into a raw wound still hurts like mad. Luckily, it stops hurting (mostly) as soon as the procedure is done. It still hurts a lot to stand, but not too bad sitting, and laying down, it does not hurt at all. So I can get relief from the pain whenever I need to. This is very nice, and actually makes it feel like it hurts less, because I am not trapped with the pain. This surgeon was also very nice when he bandaged it up, as he left an opening for my anus. The previous surgeon had to be reminded and then cut an opening. Surgeons, more than other doctors seem to get overly focused on their task and don't consider other aspects of what they are doing. The surgeon who lanced my abscess originally was quick to recommend procedures that were overly painful. For example he said that it ought to be repacked 4 times a day, and I told him I was not doing that, there was no way it was going to heal if I am shoving gauze into the wound that often. And he said that he wanted to make sure it stayed clean. He thought for a moment and then told me that 2x a day would be fine. Why did he not say 2x a day the first time around? I think it was because he was focused on the wound being clean and had lost sight of the wound healing.

Anyway, I got permission from my surgeon to continue walking. He thought it would aid in the healing even though it hurts. After Becky's aunt, Pru, stopped by today, Becky and I walked out to the car, and she drove me around for a while. I got to see some things that were not attached to the hospital, so that was very nice for me.

It has mostly been a relaxing day for me. I have not had to have any blood or platelets. I have to be hooked to the pole for my antibiotics, but those only take 1/2 hour to pump in. So most of my time has been off the pole.

I did have some blood in my stool this evening, and the nurse let the doctors know, but came back and said that the doctors were not too worried about it. It came from my dressing, and it will only be a problem if I get considerably more, or that it continues for a while.

I am going to take a sponge bath, which is easier than a shower now that I have two things to cover up because they can't get wet. Then I am going to go to bed early. It has been a relatively quiet and easy day, but I am still beat.

Leif

Post-op

It has been a crazy day. I know that Becky has kept everyone pretty well informed as events happened, but starting at 5am, it has been a constant stream of doctors and nurses in and out of this room. There have probably been more than 50 different individual who came into my room today. Most of them wanted to look at my butt. I should have just walked around without pants today.

I will skip to surgery so that this post is not too long and I can go to bed early. Down in surgery, there were a number of people who "were glad to meet" me. I am not sure what this is about. Did they know my case history and it has been a big topic of discussion? Do they know something personal about me that they like? Is this just something that they say to all surgery patients to help calm them? I have no idea. Anyway, before surgery there was a lot of friendly chatting and people sitting around. I think that if I had a deck of cards on me, I could have gotten a game going. They did all the official paperwork too, of course, but it seemed very social.

The anesthesiologist came by and explained that they were going to put me completely under with some sort of gas, and after I was out, that they would have to put a tube down my throat so that I could breath while I was under. I said that would be fine - whatever is needed, signed his form. As they were getting me ready to be rolled into the operating room, one of the younger guys opened his lab coat and from the inside pocket, pulled out a couple of syringes, and asked if I wanted anything, you know, to help you relax. It just felt so much like a illegal drug transaction that I found it very funny. I suppose most people are pretty stressed going into surgery, but I was actually quite relaxed, so I said that I was all set.

They gave me some pure oxygen and then changed over the gas to something else. I complained that it was hard to breath but my voice was really muffled by the mask and the anesthesiologist said "What?". That is the last thing I remember.

I had mentioned to the anesthesiologist that I typically shake off anesthetics much faster than most people, and that he ought to give me the maximum safe dose, so that I do not wake up during surgery.
When I woke up, I was back out in the waiting area, but startled the woman that was watching me. Here, people who are put completely under have some med student physically watch them until they wake up to make sure that they are still breathing, etc. She was not expecting me to be conscious for another hour or so. I had JUST come out of surgery. Within a few minutes, I was asking for my glasses and a drink, and sitting up talking.

In general, I was in not too much pain. My butt hurt quite a bit, of course, but also my throat was quite raw and my voice was hoarse. I was clearly on some good pain killers, and they gave me more while I was sitting there. I was soon wheeled back up to my room and given two pushes (which means a syringe full push directly into one of my IVs) of morphine.

The people kept coming though. Several people from the surgery team came by to check on how my wound was doing, and then there was a long discussion of whether I needed more platelets or not. However, my platelet count was 27, which is fantastic (for me), so it was eventually decided against, although it will be closely monitored. Another big win for me today is that my neutrophil count, which was 0.0 yesterday, and the day before, etc popped up to 110! It is clearly on the way up and while it will probably waver a bit 500 is the magic number for going home. I want to see what it is tomorrow.

Bedtime now.
Love you all,
Leif

Back from surgery, walking around

Posted by Becky
Leif is back from surgery. They did lance an abscess, so they did not do a bone marrow biopsy. He shook off the anaesthesia about 20 minutes ago; he tends to do that before anybody expects him to, but fortunately he stayed under for the duration of the surgery. As soon as he got back, he got up and went to the bathroom and is changing his clothes. I'm heading out to pick up some food; he couldn't eat before the surgery, now he's hungry, and the hospital lunches are wretched. His temperature is 98.8F.

More later as we hear more, but I wanted to let everybody know that he came through fine and is up and talking.

Off to the OR

Posted  by Becky
We got some more info from the doctors before they wheeled Leif off to the operating room.

Although they got some information from the CT scan, it's not clear whether there is an actual pocket of fluid in there, or just generalized inflammation and swelling. They'll use an ultrasound in the OR to see for sure. If there is no pocket of fluid to drain, they won't cut anything, just send him back upstairs and hope for the antibiotics to take effect. If there is fluid, they'll drain it and take a sample to culture, to see if they can determine the specific bugs causing the trouble; that will help them target the infection with the most effective antibiotics.

Speaking of antibiotics, it turns out they're giving Leif daptomycin after all; his IV antibiotics are daptomycin for skin flora every 12 hours, and meropenem for gastrointestinal flora every 8 hours. They figure he's most likely infected with either skin or gastrointestinal bugs (or both) due to the location. These new antibiotics have not had time to take effect yet. They have stopped the Zosyn since it was not controlling the infection. He's still getting acylcovir and voriconazole, although not specifically for this infection; they're preventative treament since he's been immune suppressed for so long.

To keep things exciting; if the timing works out, they find they don't have to cut him open, and the right doctor (Dr. Manda, a hematologist/oncologist) is still available, he will do a bone marrow biopsy in the operating room while Leif is there and conveniently knocked out. If Leif's blood counts haven't come up by Monday they have been planning do a bone marrow biopsy then or Tuesday, to see if they can determine the cause. If it works out, it makes sense to take the opportunity to do it today instead.

Leif's neutrophil count went from 0.000, where it's been since finishing his chemo, to 0.110 this morning. His total white blood cell count has been and remains 0.2; now slightly more than half of those are neutrophils, which are the good/functional guys. If his counts start coming up nicely, they won't do a biopsy on Monday after all.

Surgery this morning

Posted by Becky
It's been a busy morning. The surgeons plan to treat Leif's potential abscess (there doesn't seem to be a lot of fluid, but they want to open it up and drain it) sometime this morning. Currently they're doing some setup in the OR, and tanking Leif up with a unit of blood and two of platelets. He already got one unit of platelets, and they will run another while Leif is getting the surgery. They are going to anaesthetize him for this one.

Although it is higher risk to do the surgery when his platelets and neutrophils are so low, the risks of this infection getting worse outweigh the surgical risks.

Leif's had an intermittent fever (they're keeping it down with Tylenol) and feels pretty blah this morning. His butt only hurts badly when he stands up; it's hardly painful at all when he's lying down or, oddly, sitting. He's napping while he gets his blood.

The new IV antibiotic they're giving him is not Daptomycin, but Merrem (meropenem), which targets bacterial infections.  

Infection acting up

Posted by Becky
The infection on Leif's butt is acting up again. He had a mild fever for a lot of today (around 100F), and it's increasingly sore. He got a CT scan to see whether there is swelling inside, and there is. The hematology team ordered an additional antibiotic - daptomycin - which he's had before. They'll start that after today's unit of blood has finished infusing. Some infectious disease doctors have also been by; their recommendation is to drain the abscess surgically. They would have expected the antibiotics he's currently on to take care of this infection, and would like to get a culture of the fluid in there. Generally there are multiple bugs in an infection like this. But a surgeon hasn't been by for a visit yet. With his low platelets and immune suppression, surgery will involve some risks.

Leif's done with his radiation treatment. He asked the hematology team and radiation oncologist whether it makes sense to get all 9 treatments considering the first six have not seemed to have much effect on his spleen. The doctors said they had a long discussion about the question today. The papers about using radiation in similar circumstances are focused on reducing pain or improving blood counts. The radiation oncologist says that he's comfortable with what's been done so far. It may still have have an effect, a few weeks from now.

The other purpose of today's CT scan was to see whether he has any internal bleeding again, since his hemoglobin continues to go down. It could till be going into Leif's spleen.

They discussed the various reasons his blood counts have not started coming up yet. It could be the lymphoma, or infection, or antibiotics, or that his healthy bone marrow stem cells are few and far between because of all the chemo, etc. At some point soon, they will start investigating this issue.

Leif has some swollen, tender lymph nodes in his groin that he just noticed yesterday. They could be due to the infection.

Hanging in there

Posted by Becky
Leif got radiation and another unit of blood today, both of which made him feel crappy. Not nausea, and not pain, but a bad feeling that resembles nausea except that his stomach's not involved. The scan yesterday showed that his spleen has not gotten smaller since the radiation started. I was surprised by that, since his belly is definitely smaller, as measured by my highly scientific Hug Test. Anyway, that's disappoining.

But, as one of his doctors says every morning, "forward!"

Below is a photo of Leif with his new hospital room art, a beautiful collage put together by some of his Belfast friends and admirers. Since Leif has prosopagnosia (face blindness), he finds photographs of family and friends rather annoying; he can't tell who the people in the picture are, except via contextual clues, clothing, etc. Thus unlike most people, he doesn't get an emotional boost from looking at photos of loved ones. So his friends sent images of things besides themselves, instead. 

Leif and a few missives from Moonbat Kingdom -- "We're three times as crazy as your town."

Waiting uneventfully

Posted by Becky
We're still waiting for Leif's blood counts to come back up. They are still low; he got a platelet transfusion yesterday. His red blood cells were low this morning, but not so low that he needed a transfusion. He hadn't gotten any transfusions for several days before yesterday's platelets, so he's almost holding his own, but not gaining yet.

In the meantime, he's still getting radiation on Mondays, Wednesdays, and Fridays. His belly is noticeably flatter, although the edge of his spleen has not retreated noticeably compared to his belly button. The radiation makes him a bit more nauseated each time he gets it, so he does not look forward to it. They are able to control the worst of the nausea with medication, but the nausea plus pressure on his stomach from his spleen has been keeping Leif's appetite suppresed. He eats as much as he can, but has been losing some weight.

We were both happy to get a lot of visitors this weekend; Leif's parents, Kristen J, Abby, Ryan, and Skye made our week and brought much-anticipated pots, pans, clothing, food, and art - including an awesome collage put together through a group effort in Belfast - to us from home. It was a delight to see them. We also both greatly appreciate the cards, phone calls, books, etc. that people have sent.

Here is how our days have mostly been going: this morning starting about 6, Leif got his usual blood draws, meds, breakfast, and IV antibiotic.* Leif took a walk around the building, spent some time in the nearby family/patient lounge working on a puzzle, then did some work on the computer while getting his second IV antibiotic dose of the day, before going to radiation at noon. After the radiation (about 2:00) he took a big slug of antinausea meds, made and ate a tomato sandwich, and then the medication - which is also a sedative - kicked in and he's been napping ever since. He just started his 3rd dose of antibiotic and took his scheduled painkiller and antinausea pills more or less in his sleep. Later he'll probably get up, ride the exercise bike to wake up a bit, then do some more computer work until bedtime. He gets another IV antibiotic dose at midnight.

Last night after a fun and social weekend, I fell asleep in the recliner at 7pm, got up briefly in order to pull out the cot and fall back asleep at about 11. This morning at 6:30 I woke up, ran some quick errands before work, worked from the recliner in Leif's hospital room, went for a walk around the hospital grounds at lunch, finished my workday, and will probably do some reading this evening. I've mostly been staying on a cot in Leif's room at the hospital, with trips to the apartment to shower, change clothes, and cook.


*In terms of antibiotics, Leif's currently on Zosyn, a broad-spectrum antibiotic that he gets as an IV every 6 hours, oral acyclovir (an antiviral), and oral voriconazole (an antifungal). These are all strong antibiotics used for patients with suppressed immune systems. I am sure we have them to thank for Leif's avoidance of fever since the one he had for half a day over a week ago. 

Moved to a new room at DHMC

Posted by Becky
This morning I saw signs that there had been a mouse in Leif's room. We've been keeping bread and crackers and chocolate in there, and Mr. Mousie found it. So a few hours later, Leif's in a new room and I need to buy new groceries, and a tightly sealing container to put them in.

His new phone # is 603-650-2109. His room # is 109.

The new room is not as nice or as big, but we've fit everything in, and mouse-free is a good thing.

Today's doctor visit update:
Leif's hemoglobin was stable or might have gone up a bit overnight without a transfusion, and his platelets are holding steady. So they suspect that the internal bleeding has really and truly stopped. They have taken him off the Amicar (a drug that assists clotting) and are holding off on any more platelet transfusions unless his levels drop again.

Leif has radiation today and Friday. He feels like although is spleen is still as long (across the front of his belly) as it was before, it seems to be less deep; he doesn't feel so over-full after eating a meal, and it's less uncomfortable for him to bend forward. He got some Reiki this morning from one of the volunteers, and his energy level is higher than it was last week.

2nd dose of radiation.

Good news, my red blood cell count did not drop last night, which probably means the internal bleeding has stopped. Also, my platelet count was 13 this morning, which is the highest it has been in a month, and anything over 10 is acceptable. They gave me another dose of platelets this evening because a normal count is up around 200 to 400, so they are planning on continuing to give me platelets until the count is above 50.

I had my second dose of irradiation today. I learned more about the machine. Doug asked me what it used as a source for the gamma radiation. It turns out that it is a linear accelerator, so it does not use a source at all. A linear accelerator takes electrons and accelerates them to very high speeds. Even my non-sciency friends may have heard about the linear accelerator at CERN where they recently discovered the Higgs Boson. This is a bit smaller, but the same idea. The electrons then hit a metal target, which changes them to photons. The photons are filtered to wavelengths that are wanted. When people talk about gamma radiation, they are talking about the wavelength. Gamma radiation are photons, just as visible light is, but because the wavelength is different, they have different energies. After it passes the filters, there are number of reflectors, called leaves, which shape the beam and bounce it toward the target organ. The leaves can move to change the shape of the beam dynamically, as the whole thing rotates around the person. This focuses the correct amount of radiation in the target organ while keeping the amount of radiation in the nearby organs low enough so as not to damage them. Because my spleen is pretty large and there is not much in the way from the front and the back, they just do two half-doses and do not do a dose from the side, where they might hit my kidneys.

My dose (per treatment) is one grey (Gy) and I have 9 treatments scheduled, but we may not do all the treatments depending on how my spleen responds. 1 Gy equals 100 rad, and rad stands for radiation absorbed dose. This is a pretty large dose, in that you would not want this much radiation if you were not getting treatment - it is about the radiation in 5 million bananas, or 20 times the safe limit for a radiation worker. However, as a treatment dose, it is about as low as you can have, with typical treatment doses going up to 60-80 Gy.

I have felt pretty good all day, and no nausea from the radiation. Also, I got lemon meringue pie for dessert, so life is just fine.

Irradiated on Friday, quite Sunday afternoon.

I had radiation on Friday. After a ton of consent forms and photos and timestamps, they lay you down on this bag of styrofoam beads that they contour around you and then suck all the air out of, so that it makes a form that holds you rigid. They do this once, and keep the form throughout your therapy. They then take a CT scan of the target area - in my case my spleen, and build up the 3D model. After the model is done, the skin is marked so that everything can be aligned on the radiation table. I was told that I was going to be tattooed for that, but they ended just drawing on me with a sharpie and then putting clear stickers over the ink because my platelets were so low that they were worried that I might not stop bleeding and that it would be an infection risk.

The radiation took about 20 minutes and consisted of a big square paddle which hovered over me and buzzed for a little while, then went underneath me and buzzed for a little while. Doug asked some questions about it which I am going to find out about, because I am sure that it is a fascinating process behind the scenes. I just did not know what to ask while I was there. I will be going in for radiation on Monday, Wednesday, and Friday. There were no ill effects. There was the possibility that the spleen would release too much dead material, called tumor lysis, and my kidneys would have a problem, so they have been giving me extra fluid to mitigate that possibility, but from my blood work, it looks like that has not happened. I might have slightly elevated nausea, but it is hard to tell, since I have nausea from the chemo.

I have been slowly recovering. I still need 2 units of blood and 2 or 3 units of platelets a day, but the amount that I am retaining is slowly increasing. I also recently have been able to taste food again. Somewhat fitting is the fact that the first food that I could really enjoy was potatoes. Today I had saag paneer that Becky brought back from me from an Indian restaurant in Hannover that she and her Texas friends went to last night. It was delicious, and some of the first food that I have really enjoyed. Last night I had the hospital's chicken pot pie, and was surprised with how good it was. The biscuits were freshly made and it was full of freshly cooked vegetables cooked just right. I guess I had not realized that all the good vegetables were hiding out in the meat dishes, because the vegetarian dishes here are just cheese-based with very few veggies. Tonight's meal is fresh crab cake on spinach, which, after the pot pie experience, I am tentatively looking forward to checking out.

Radiation Tomorrow

Posted by Becky

Leif got a red blood cell scan today, in an attempt to determine where the blood leakage is in his abdomen. They injected him with some red blood cells tagged with an isotope, and then scanned to see where the blood went. However, while they checked him in the machine for over an hour, they did not see anything that provided useful information. This was not a completely unexpected result; the technique is most effective for somewhat rapid bleeding.

So in a way, the inconclusive results are good news; the leak must be quite slow, or has possibly clotted. His blood counts (plasma and hemoglobin) were up during the check he got right before the scan. They now look good enough that the nurses are no longer going to automatically give him platelets every 6 hours; instead they will check his blood levels every 8 hours, and transfuse blood/platelets only as needed.

It also means that the contraindication for radiation treatment - bleeding from his spleen - is not a concern. Therefore, starting tomorrow, they are going to do radiation therapy on his spleen. The goal of this is twofold; first, to knock back the lymphoma in his spleen (lymphoma is sensitive to radiation) and second, to halt some of the suspected sequestration of healthy blood cells in the spleen. The risk is that the radiation could actually lower his blood counts if it takes out a lot of these healthy cells. Although, as the doctor pointed out, his counts are so low already, they don't have that far to drop.

Anyway, early tomorrow morning they will do a scan to target exactly where they should send the radiation, in order to hit his spleen but minimize radiation to his nearby organs, such as his lung and kidney. Then in the late afternoon/early evening, he will get his first dose of radiation therapy. Tomorrow and Sunday they will check his blood levels and see how things look. If he looks good, they'll give him another dose on Monday. The doctor thinks that a couple of doses, maybe a few more, will be sufficient since lymphoma is so responsive to radiation. The dose they will be giving him is relatively low compared to typical radiation cancer therapy.

Leif is feeling better and has more energy today. He went for a nice long walk (20 minutes or so) around the hospital this morning, and did a gentle workout on the exercise bike this afternoon. His appetite is increasing - food doesn't taste very good to him, but it doesn't taste bad either, which is a real improvement. He continues to make a good effort to eat, even when he doesn't feel like it. He has lost quite a bit of fluid weight, which is a good thing; the swelling in his legs has just about gone away. He is methodical and diligent about following all doctor's orders; keeping moving, wearing his Sequential Compression leg wraps, keeping a warm compress on his sore butt to encourage healing, etc. Said butt is looking good - the redness is gone, and the soreness is diminishing.

I started back to work yesterday (I had been on leave for the move etc.); it is nice to get back into a normal routine. Three of my friends from Texas arrived this evening for a weekend visit, which I have been looking forward to very much. 

Halloween Update, Vampire Edition

Posted by Becky
Leif's got another dose of Rituxan today. He had some shortness of breath right off the bat, so they dialed the rate back slower. They give him a ton of Benadryl beforehand (standard procedure) so he gets very sleepy, and although he hasn't had a severe reaction lately, it still makes him feel rotten. He got some Reiki during the dose from one of the hospital bodywork volunteers. which he enjoys, and which always relaxes him.

The big worry today is that the blood leak hasn't stopped yet. The doctors said during morning rounds that a radiation oncologist and an intervention radiologist would come by to see him today, in case they need quick options tomorrow if the current treatments (platelets and aminocaproic acid, which encourages clotting) don't control the bleeding. The believe it is a venous leak from his spleen, since the blood loss is relatively slow. The radition people didn't turn up today, so maybe tomorrow. It is possible to radiate the spleen, or go through an artery in his leg and stick a "clot" into his spleen. Scary. Of course they don't want to do anything surgical with his platelets so low.


The sore on his butt is a bit less painful today; still looks red and angry, but no fever. It was draining but now seems to have stopped. They feel they have him on the right antibiotics, and no surgical intervention is necessary, or at any rate would be a bad idea at the moment. His neutrophils are still zero. He just got a unit of platelets and is about to get one of blood; he also got a unit of each this morning before the Rituxan dose (which, since it runs so slowly, takes about 6 hours to go in). They are continuing to check his blood levels every six hours, which will help them tell whether the internal bleeding has clotted, as well as whether he needs additional blood or platelets.

The swelling in his legs and feet has gone down a lot. The Sequential Compression Device (which I described yesterday) and compression stockings seem to be helping that, but it's also going down in his knees and upper legs, which are not being squeezed. No fever today.

He has continued to take walks at least twice a day; one long walk (15-20 minutes) around the hospital building for a change of scene, and at least one short one around the "pod" where his room is. Unfortunately, he can't go outside with his neutrophils so low, which as you can imagine, is stressful for Leif since he loves to be outdoors. No exercise bike today since he was feeling so wiped out from the Benedryl and Rituxan.  We have bread, jam, peanut butter, yogurt etc. for snacks, so he tries to get out to the pod kitchen to prepare his own snack at least once a day. He's careful to wear a mask anytime he leaves his room. They also had a bowl of Halloween candy at a nursing station, so he was able to get some mini candy bars.

Our new contact information

Posted by Becky
Here are the ways to reach us now:

Leif: 603-650-2106. The best time to call him is in the afternoon. Bedtime can be as early as 8pm. If he's sleepy or fatigued, he won't answer, so don't worry about disturbing him as long as you keep calls relatively short. Now that we're so far away from friends and family, phone calls have become really important to keeping Leif's spirits up.

Mailing address: PO Box 939, Lebanon, NH 03766

My physical address (for FedEx etc; there is no mailbox at this address):
Barron Hill Alpacas
3223 County Rd.
Windsor, VT 05089

Our mail will get forwarded from the Brooks address to the PO box; my last couple weeks' worth of mail should be arriving here relatively soon.

Survived a mild fever, leaking blood. Otherwise doing well.

These last few days, other than some back pain, have been relatively good. I have been exhausted, but I had also forgotten that during this period, they usually send me home and I do nearly nothing other than crash on the futon for most of the day. Here, because the routine is the same, I did not get the psychological break that comes from going home. On the other hand, they caught my fever immediately, switched up my anti-biotics, and got it under control in under 12 hrs. Our previous schedule would have been me denying that I "really" had a fever, and 99 degrees was just an outlier, and we could go to the hospital tomorrow if it had gotten any worse during the night. (For unknown reasons, fevers seem to hit in the wee hours of the morning).

Inevitably, I would be sick, and Becky would drag my sorry carcass into Waldo General where they would stand around and look serious for 8 hours before sending me on an ambulance to Midcoast Maine, down in Brunswick. And then I would be stuck there for a week while they treat my now serious fever, and the high pain that comes with it. (although the pain would never seem to be connected directly to the fever  - like now, my pain is in my pulled back. Go figure).

I got 4 units of blood today, as well as getting a unit of platelets. Thank all of you that donate blood and blood products. You, and people like you are literally keeping me alive. The gods only know what I can possibly be doing with needing 4 units of blood though? Where does it go? The human body only has about 10 units of blood total. Clearly there is some sort of leak. I try not to think about it too much.

I have my 2nd round of Rituxan tomorrow morning, but I am not too worried about it. It seems as though they have the routine down. Slow and steady has been the key. I will be fatigued again after the procedure  and spend the next couple days mostly sleeping, but that is my primary job, and like almost every job, it sucks more than it is rewarding. And like a normal job, I have about 8 bosses (here they are called "the Team", which are my doctors.) They typically agree about 4/5th of the time, and so my treatment goes forward, but I never know what is coming up next. We have daily meetings in the morning, and I hear about what the plan is going to be, but typically the plan has changed by noon. Partly because of new blood work, but partly because there are so many people involved and it takes a little while for all the information and ramifications to come through - messages from the pharmacy and nurses for example. 

Watching carefully & waiting

Posted by Becky
Leif's neutrophil (white blood cells, i.e. his immune system) count is still zero, so they're watching carefully for signs of infection. No fever yet, though.

His hemoglobin count dropped quite a bit between yesterday and today, so today after he got a unit of blood and one of platelets, he got a CT scan. They wanted to check his butt, and also see if he had any internal bleeding. They did find some extra fluid in his abdomen that is likely to be blood plus other fluid. There is no way to tell where it might be coming from. The amount that's currently there is not a dangerous amount, but they don't want there to be any more. So, they're discontinuing his Neupogen shots for the moment. That is the shot that stimulates his bone marrow to produce neutrophils, but it can also lead to a ruptured spleen - which of course would be very bad. So no Neupogen for now. They are also going to put him on some aminocaproic acid (Amicar). That's a drug that will encourage clotting.

Aminocaproic acid can also increase the risk of deep vein thrombosis. That's the problem that people can get on flights to New Zealand if they don't stand up and move around often enough; basically a blood clot. So Leif will need to stay active while he's on this drug. They're also going to give him compression socks and a Sequential Compression Device for his legs. An SED inflates and deflates and sort of massages his legs. The doctor says that people say it feels good.

He doesn't have any symptoms of abdominal bleeding, like abdominal pain or dizziness. We will be watching for anything like that.

Despite all this and a lot of drowsiness due to the painkillers Leif is on for his back pain, he feels as good as he's felt in a while. His appetite is returning after a number of days of not feeling hungry. They are going to check his blood levels every 6 hours to watch for signs of more blood loss, and they also check his temperature frequently since he is at such high risk of infection/fever.

Although the CT scan was supposed to check his butt, the radiologist didn't say anything about it. It is hurting a bit more, though and is swelling up a bit. For a while you couldn't really tell where the incision was, but now it's visible again. They're treating it by starting him on Zosym, an additional antibiotic. If he gets a fever, they will add yet another antibiotic.

I got through my Rituxan yesterday, as Becky said. I am unhooked from all the pumps and fluids, which is so nice. I went for a couple of walks today to celebrate. The walks are tiring, but the exercise is good, and I need to get out of this little room once in a while. I think that space travelers are going to have much more difficult psychological problems than most people think. I know that nuclear subs stay down for months at a time, but frankly, they are huge compared to anything I can imagine putting up in a space capsule.

I have been in the hospital for 3 weeks on Sunday, and I am looking at least another 3 weeks, and possibly many, many more. I have to wait for my neutrophils come back up to a reasonable level, because infection is the most dangerous part of the treatment. I have another Rituxan session coming up, but I have not looked to see when, exactly it will be. Sometimes it is better to just go along day by day. After all, it is not like a Rituxan day is something to look forward to.

This last chemo treatment has done good things though, my spleen is the smallest it has been since I went in to the hospital back in May. The doctors are hoping that with another series of this treatment, I might go into remission and be able to harvest my stem cells for use. This would be great. Donor stem cells are pretty dangerous (because the donated white blood cells are in a foreign environment and can perceive everything as a possible source of infection). My own stem cells would produce white blood cells that recognize my antibodies and proteins.

So, there is a lot to stay upbeat for, even though each treatment is psychologically harder. No one likes to be poisoned, and I am currently on something like 37 different medicines, many of which come at different times, so I have been woken constantly during the night every 2 to 4 hours for the past 2 weeks or so. It is tiring in a way that is hard to describe. Some of the medicines, too, have emotional effects, and I have been a little weepy for no good reasons. Sure the chemo is hard, and the room is tiny, but other people get through this fine, and I am stubborn as hell, so I can't see that I am going to be taken down by some single-celled organism. Life is still amazing.

I have been thinking about my friends, and while I wish that I could see them, there are a few things to consider. One is that it is a long haul from Belfast to Dartmouth, and that I do not have the energy for more than a couple hours of visits. Another part of that is that because I am tired so much, I can not hang out with too many people at a time. Two people or so is pretty much all that I can handle, before I get overwhelmed. The third part is that I am neutropenic, and have to be careful of infection. Becky and I were thinking that if people wanted to road-trip out to see me at some point, the thing to do would be to see me for a while, and then hang out with Becky at her rental, and then perhaps see me again in the morning before you leave.

I do enjoy phone calls, and my number here is (603) 650-2106. If I am asleep, or wiped out, I simply don't answer the phone, but I am usually up to a conversation in the late afternoon.

Chemo cycle done

Posted by Becky
This chemo cycle is now done. The Rituxan went okay; they took it very slowly and Leif didn't have any reaction, except a bit of shortness of breath. When he got that, they slowed the dose down for a while, it cleared up, and then they raised the dose a bit again. He also got two units of blood and one of platelets yesterday.

This chemo regimen will drop Leif's already-low blood counts, and keep them down for about three weeks. Patients therefore generally get infections on this regimen. Since Leif has been prone to infections in the past, they're going to keep him in the hospital the entire time his blood counts are low, so they can monitor him closely and treat fevers, etc. immediately.

Rituxan today

Posted by Becky
Today will be day 5 of Leif's new chemo regimen. So far he's had few side effects from the chemo. Today he's going to get Rituxan, which he's reacted to in the past, so we have our fingers crossed. His blood counts have started going down already - he got a blood transfusion yesterday - and are expected to stay down for about 3 weeks, which is longer than any previous regimen. He will be at very high risk for infection over that period of time, so they're going to keep him in the hospital until his blood counts come back up. He can still have visitors, unless you have anything like a cough or cold, since he's susceptible to everything.

I have rented a furnished apartment in Windsor, VT - actually, a guest house on a small alpaca farm. It's quite lovely. We're looking for a secondhand futon so I can put up people who want to come visit Leif. The drawback is that it's about 25 minutes from DHMC, but the bonus is that it's near my aunt's apartment in Hartland. 

If anyone is coming to visit this weekend from the Belfast area, please get in touch with me. I'd love for someone to bring the stuff I packed (like warm clothing) for this trip when I was expecting to be back in Brooks before heading out this way. And now I have a place to put it!

Lead-lined room.

One of the crazy things about this particular room in Dartmouth, is that it used to be used for radiation therapy, and all the walls have 3/8" of lead under the sheetrock. This is true of the doors as well, you can see the thick lead panels in the middle of the doors. Not surprisingly the doors weigh a ton. Ok, not literally a ton, but the lead in the 4 foot door weighs 532 lbs, and in the 3 foot door it is 399 lbs. The doors have these massive hinges and are nicely balanced, but there is definitely some time that goes by between when you start pushing on the door and it begins to move. The addition of having access to pumped air and oxygen, a private bathroom, and a first rate, research hospital, with its own generators and water supply makes this an unusually good room to be in if there is suddenly a zombie apocalypse. I just need a $2 wedge to jamb the door with, and I will have plenty of time to work out the details of the next steps. If you are reading this in Waldo county, and you think that the Waldo County General Hospital would work, let me just say, that I have evaluated those rooms and they will not hold up, for a number of reasons. Your best bet is to get to one of the remaining box cars with your emergency overnight bag (make sure to grab your winter weather kit), food, chains, padlocks and lock yourself in. That gives you 1/4" of steel for the zombies to get through and should give you enough time to come up with more detailed plans.

My feeling is that if the zombies shrug and go grab welding equipment then clearly they have not lost very much of their ability to think or fine motor skills. Which seem to be the downsides of being a zombie. The upside, of course is the whole (apparent) immortality thing that they seem to have going on for them. If they were really dead, they would rot and stink and fall apart in a couple days. They also apparently don't need to eat, although they enjoy feasting on brains. Just about any zombie movie that I can think of, the zombies have been around, or last for months or years. Oh, and in you zombie survival kit put in a bunch of decent hospital-style masks and anti-bacterial soap. it may just be an infectious disease. On the same note, don't kill the suckers in a way that sprays their potentially infected blood all over the place. That just seems like asking for trouble.

Got my hard chemo started today, which is good since we need to smack down these infected white blood cells before they get even more uppity. I am on etoposide and cytarabine as my chemo drugs.

Cytarabine

Etoposide

Etoposide works by causing errors in DNA synthesis and promotes apoptosis in fast growing cells, especially including agressive cancer cells. Cytarabine is an antimetabolic agent which inhibits one of te phases of DNA replication. These hit all my cells, but the faster dividing the cell, the harder it hits it. My normal cells basically lose the ones that were going through division right then, but the bulk of them are unaffected.

Leif