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.