I am now officially, probably, in remission. Yesterday, I had a PET scan and a CAT scan and discussed the results with Dr. Zuckerman. The good news is that there is no indication of the lymphoma from either scan. For good measure, he did a bone marrow biopsy today, the results of which should come through on Friday. Now for the not so good news:

1. The PET scan showed a “…moderately intense focal uptake of tracer [in a location that corresponds to] the sigmoid colon. The report says it’s probably spurious, but since I haven’t had a colonoscopy for a while I’m now scheduled for one next week, with an endoscopy thrown in for good measure.
2. I managed to fracture some of my ribs since they last checked me in November. This is curious since I’d have thought I’d have remembered doing so –it may have happened when I was vomiting one time. Either that or I did it in the excitement of watching “Cinderella Man.” No immediate cause for alarm though.
3. There are patchy sub-centimeter blobs in my lungs which are probably indication of an inflammation, but perhaps not. They’re just going to monitor it for now.

My next set of tests is scheduled for three months from now.

o The PET scan stands for Positron Emission Tomography, and involves being injected with radioactive glucose, relaxing for an hour, and then being slowly scanned though a donut tube. The worst part of this is having to keep still for so long.

o The CAT scan stands for Computerized Axial Tomography, and involves having to drink Crystal Lite spiked with a dye for an hour and a half before the scan, and then being injected with more contrast dye during the procedure from a huge syringe. Unlike the PET scan, the actual scanning is over in seconds.

o The Bone Marrow Biopsy involves being stuck with a large bore needle with such force that it penetrates the bone. You lie on your belly and the doctor numbs the area with lidocaine. It hurts a bit but only for a few short periods.

My neuropathy is no better. I’m perhaps getting used to it, but it still hurts a lot at times. I’m very unsteady on my feet and have very little lateral stability. Exercise however seems to be paying off in giving me some increased agility and it has been nice to have some good weather recently, allowing me to take Diggory for two-mile walks in the town forest. I’m not much good on upgrades, but can basically manage to stagger my way around the “short walk” (red-orange-white-blue) and have so far managed to survive the hazards of tree roots, mud, and the like. Maureen walked with me a couple of times, and today, Miranda walked with me. I begin a new medication today, Neurontin, (aka Gabapentin) which Dr. Zuckerman prescribed. It’s supposed to help with the pain.

I’m also allowed to drink in moderation, and I just finished off a scotch and ginger, which tasted pretty good. That also helps with the pain, though not at the same time!

Cedric and Ginny are totally at home now and playing with Diggory, and Diggory with them. We had our scares with Ginny – for a while she was having a hard time keeping her food down, but she seems to be over that now. She’s a little shy, but once she settles down on your lap she’s perfectly content to stay there. Cedric is much more rambunctious, he likes to explore and investigate whatever it is you’re doing. It’s nice having cats in the home once again!

Another long week dominated by trying to find out how to deal with the neuropathy in my feet. The iSqueeze wasn’t doing any good; rather it was actually hurting my feet, so we returned it. What does seem to work is exercise. I’ve been doing the treadmill most days, even though it is hard on my feet. Today and yesterday were both warm enough that I could take short walks in the town forest. I realize that what I need to do is to build up my leg and calf muscles – not that it reduces the pain, but it helps my balance. A heating pad on my feet does reduce the pain, but I can only use it when I’m lying on the couch.

Another side effect which I’m blaming on the chemo is listlessness. I go to bed early and get up late. I seem to have lost my urge to do stuff, and I must admit to occasional bouts of depression. It’s not clear that my body will ever get back to normal. From one day to the next, one week to the next, any improvement in my physical status is minor, at best. I am hoping that these feelings will dissipate when the weather gets better, which it is supposed to do later this week. I’ve already ordered plants for the garden and am looking forward to be able to spend more time outside in the yard.

The other big news in the Doutch household this week is the arrival of two new kittens. Staying with the Harry Potter theme we’ve named them Cedric and Ginny. Diggory is slowly getting used to them, and vice versa. You can see pictures of them in the photo area.

I see it’s been a week since I posted to the blog. It seems longer. Now that that chemotherapy is over there’s nothing more to do to treat the disease. I am hopeful that the chemotherapy has had the desired effect and knocked out all the Burkitt’s cells. I will know more mid-March when I go back in for tests, including taking a sample of my bone marrow. In the meantime, I have been left with peripheral neuropathy in my feet, and to some extent in my fingers.

Neuropathic pain does not respond to painkillers. It feels like constant pins and needles in my feet. Walking is painful, like walking on broken glass, so I find that I am discouraged from moving around much. I have been religiously doing the exercises that the physiotherapist drew up for me at the hospital, and today I began gentle exercise on the treadmill (20 minutes @ 2.1 mph, 1 degree grade). It hurts to exercise but I’m impatient to regain some strength in my calves so I will try to keep it up. We also bought an automatic foot and calf massager, the iSqueeze, which I use several times a day. I have no idea if any of this will speed up my recovery at all; by all accounts it takes several months for the neuropathy brought on by chemotherapy drugs (mainly Oncovin) to subside, and even then, it may never go away totally.

The weather in New England has been merciless this last week. It was just warm enough on a couple of days last week that I could take a stroll around the yard, but today, with subzero temperatures outside, that’s out of the question. I can’t wait for this winter to end!

The last week in hospital was definitely the worst. For the first few days I was running high temperatures fairly frequently. I could feel them start to come on – first it would start with muscle pains in my sides and shivering, then about an hour later the high temperature would come on. I found eventually that 10mg of oxycodone would take care of the muscle cramp, but then I’d need to wait until the high temperature before they’d give me Tylenol. After a few days the swelling went down on my coccyx and they were pumping me full of antibiotics, and the fevers went away. I still spent most of my time hooked up to the IV pole and felt most comfortable in bed. A lot of the time in hospital was spent waiting. It takes 48 hours after they take a blood sample for them to come up with a preliminary diagnosis, and another 24 for specific diagnosis. Then there was the MRI. Initially they scheduled me for an MRI then they cancelled it, then they rescheduled it. After rescheduling it took three days before I actually got the test, then another day before the doctors looked at the results and determined that it was negative. In the end, everything happened at once, and they made the decision to remove the portacath, which happened 8am on Friday (2/17) and to discharge me the same day.

I’m so happy to be home again, but naturally after so much bed time my muscles have atrophied, particularly the ankles. I have almost no feeling in my feet and walking feels like I’m balancing on blocks of wood. I duly do my physiotherapy exercises every day, but it’s early days yet to report any improvement. I’m looking forward to the weather improving a bit so that I can get outside.

Good Morning Everyone,

Bob came home last night after a week in the hospital. His fever broke mid week, but his medical team continued to do testing to determine its cause. The team felt that the portacath was the main reason for the fever, but he also had some abscesses on his back. He had a MRI on Thursday to determine if the abscesses were also internal. His portacath was removed Friday morning. We are relieved to have it out – especially since this is the second time he’s had infected blood from one of the ports. The MRI was analyzed and they did see some drainage, but no internal abscesses that required surgery. I was with him after surgery for awhile – we assumed he wouldn’t be coming home until Saturday so I went home to meet Miranda after school. Fifteen minutes after I got home Bob called and said the hospital was discharging him. By the time I got to Boston, his discharge papers were signed, his scripts written, and transport had him waiting in the lobby. After almost three months, we have never had a discharge go this smoothly!

So now he starts to heal. He had cereal, two boiled eggs, toast, 2 juices, and 2 cups of coffee this morning. He lost a lot of weight in the hospital last week. He realized that he wasn’t taking one of the anti-nauseas meds while he was there. He started them again last night after he returned home. I think a combination of the meds and home cooking will get him back on his feet again soon. I told him that he enjoyed the eggs so much because his wife cooked them for him – he didn’t seem convinced!

Miranda went back to school on Friday. She hasn’t missed this much school due to illness since she was in kindergarten when her tonsils and adenoids were removed. She bounced back enough to return for the last day before vacation, and was disappointed that skiing was cancelled in the afternoon due to the rain. On Wed/Thurs she was able to catch up on some of her missed work and study for a big math test. In between caring for our friends’ cats, a couple of play dates, a birthday party, and playing lots of games with Bob she should have a pretty good vacation.

Diggory entertained Bob with his whining and barking– he really demands his walk in the morning. He’s even more vocal when I’m on the phone with a friend discussing the time of his walk. When I see Bob smile in amusement over Diggory I know he’ll bounce back soon.

I’m sure he’ll be writing in his blog in a day or two. I’m glad I could update it for you all – you can see why he’s the analyst in the family. He spends 2 hours on his entries – I spend 15-20 minutes. Thank you for all your support and positive thoughts in your entries and separate emails to us.

Maureen