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

Bob is still in Brigham and Women’s with a fever. They are doing a number of tests to determine why, and it looks like he won’t be home by Wednesday as we originally expected. I think we all thought that once his WBC was in the normal range (as of yesterday) he’d fight the infection. He is on antibiotics but he hasn’t gotten any better.

The last couple of stays in the hospital have been hard on him – his spirit seems broken. His doctor said that the phase from the last round of chemo to baseline testing is often compared to initial diagnosis. During chemo you have treatment to focus on – now we worry and wonder about whether the treatment worked. It has already started to be a very emotional and anxious time. By the end of March Dana Farber will do baseline testing to determine if he is indeed cancer free – the start of remission. The next 6 weeks will be difficult but I am hoping that once Bob is home we’ll all be able to recover together. As one of his friends from work said – this sucks, but it will not suck forever.

Miranda also has a fever this week – hers broke out after Bob was admitted. They are comparing their temps – Miranda’s was over 103 last night and Bob’s reached 101.5. Next week she has winter vacation. It would be so nice if we all have a healthy week together.

Bob cancelled dial-up on his laptop – he was so sure he was finished with inpatient and now he’s lost interest. I’ll let you know if anything changes. I’m off to walk Diggy and then visit Bob for our Valentine’s hug and kiss!

Maureen

Maureen’s entry: Bob ran a temp of close to 102 last night. Dr. Jacobsen put him on antibiotics at Dana Farber in the morning – he will be admitted to Brigham and Women’s this afternoon. This is day 10 after the start of Round 4. He was admitted on day 10 the last time he had this chemo. This time we really thought he’d make it through recovery without being admitted. I expect him to come home by Tuesday, Wednesday at the latest.