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.