Catch us if you can!

Blake's counts were great over the weekend, so we caught up with our friends and family in the area and left Monday morning. We left so early, in fact, that Hopkins tried to keep us there because of the Seattle snow storm (afraid he wouldn't be able to get his meds) but we were already in Vegas by that point. Our flight was amazingly on time, though the Seattle streets were barely passable as methods of transportation. He is all set up at the clinic, so will go there daily until Friday and they'll pull the line then. Alden will be upset that the fun dangly things that he likes to tug on will be gone.

Blake continues to feel very well despite a bit of anemia. The fatigue and vertigo are gone and the blurred vision is already improved. He feels better than before starting this, so that is of course great news.

We hope everyone has a great holiday week and does not have to work much. We'll update this every few months or so when he gets his follow-up MRIs, but are hoping those will be uneventful and dreadfully boring posts. He'll be busy living his life and enjoying freedom from his symptoms!

Its a Boy!

Your eyes must be tired from my last post, so I'll keep this short. It seems official, Blake's fever was due to his medication and not the bacteria. Yea! All of that pain yesterday paid off big. Blake gave birth to a whole slew of Little Neuts (white cells), taking his number from 29 to an increadible 800! He is no longer at a huge risk for infection and with numbers that good, he can go home on Monday assuming things hold steady. They wanted him to stay until the day after Christmas "because that is easier" for us. Huh?? Did he not learn from our chat yesterday? If we found someone to do the same kind of monitoring in Seattle, then we could go on Monday. Five minutes later, his amazing doctor in Seattle agreed to do it and they have a great clinic associated with the hospital that is equipped to handle anything that could arise. I believe they were surprised at our efficiency. Blake was discharged home this afternoon, and will go to the clinic here Sat and Sunday. Before we left, however, I removed most of his remaining shedding hair using the tape in the hospital. Waxing is not limited to us girls. His nurse was increadibly impressed with this technique.

Alden has been having a blast at his cousins' place, playing with other kids, a dog, meeting other people, and going to school. He also cleaned out their food stores. Apparently, he gave Michelle eleven hugs after she fed him some chicken for dinner. That's graditude!

We're finally feeling a bit of holiday cheer and hope everyone else is too. I hope our next post is in the airport on our way home!

Free Lemberg Campaign Suffers Setback

As all noble crusaders encounter, we have hit a stumbling block. Blake was feeling good, then around 6 last night, felt feverish (although just a very low grade fever) and generally like he did when he had his blood infection. Back to the hospital we went. However, I had just enough time to do a literature search on the bug he is being treated for and the antibiotic. The first several entries say to NOT use this antibiotic because it can cultivate an uprising of resistance. Ironically, it also states this in my Johns Hopkins Antibiotic reference. They didn't even do a beta lactamase induction test- say that 5 times fast. My belated edification did not help things much, however. Blake was like a snarling pit bull. Very much unlike him-normally so trusting and calm. Because it is a new resident every time (such as myself), they like to experiment-I mean educate themselves- on the poor patients. He tried to tell Blake that since he had a dull headache and was feeling feverish, that they would need to do a spinal tap, another cat scan to rule out pneumonia and a whole slew of other tests. He said no thanks to the spinal tap (transcription reads: "you will stay 10 feet away from my back") , but that the headache was simply due to his intense frustration. The final scream of indignation ended with "and my wife is a doctor!". Cat comes out of the bag. I had been trying to keep this on the down-low, but it seems, things happen more quickly and with more deference when the cat is dancing upon the bag. I wasn't actually present last night, but today, the nurse clearly remembered his rebellion and told me he was in a "baaaad moood" yesterday but that they all understand. Very well then, hopefully they don't spit into that wonderful hospital food.

Actually, the 'deference' is more like they have a sighted target. I was called into the Principal's office this afternoon. His attending doctor called me personally. I think he did this because he hadn't had a frustrating or stubborn interaction in awhile. I could go into great length, but the essence is that they think this might just be the medication reaction, although we spoiled their fun of doing all those extra tests.

He did get the blood cultures taken, which have actually been negative so far. He also has not had a fever while there. It is possible, the doctors think, that this could be the fluish reaction to the immune system stimulant. That would be fantastic. He is in a lot of pain from the stimulant- Blake described, "I feel like I'm giving birth through my back." Ouch! Should end tomorrow.

All of this commotion has really interfered with our holiday plans, aghh! They initially told us that we'd have to stay at least 14 more days. They then agreed to transfer some of his care when he's definitely stable and with some semblance of an immune system. It is somewhat up again, so this may happen over the weekend if his cultures stay negative.

We had to do some rearranging, and I had a xanax, but in the end our support group here, Blake's cousin's family and his aunt and several others put their heads together and we worked out a way for Alden to be taken care of while I tend to Blake. I'll now come home on Monday, barring additional 'adverse events' and if we all cross our fingers, he may come home before Christmas. Otherwise, my family will celebrate Christmas by themselves in our home and my co-residents will put a horse's head on my pillow.

It seems from the terrific comments, that Christmas will wait for us this year. I love that! Only crusades with many determined people can accomplish such feats.

Let the Free Lemberg! crusade continue!

Fly Guy

So, I know it's time for Blake to be discharged when all of his nurses are telling him and his mother that he is "fly" and has "gorgeous eyes". Thankfully, the doctors agreed- with the discharge plan that is. He got another central line, although this one is through his arm, and will follow-up daily at the clinic. Turns out, his numbers are slightly up today, and should be recovered enough to go home on Friday perhaps! He was very happy to be at home last night and eating food not produced for NASA or in China. We had tacos, and Alden loves them too to the extent that he turned into a taco colored baby.

His white count was bottomed out for 4 days, socking it to the immune system. We want to have killed as many of his aberrant cells as possible so that it will behave from now on. Today, it's up to 100 with an ANC of 10. It rises exponentially, so on Friday it may be ready for us to leave. Apparently, they came down on Blake because I was not present at the clinic, but I had to stay with Alden and Blake is running laps around the building without difficulty. He even helped to bring in groceries! Once they realized just how well he is doing, they calmed down.

He is shedding hair like crazy, so he shaved it off at the clinic and got a comfy cotton chemo-hat. His chesthair, stubs on his head, and eyebrows have bald spots and I'm washing the sheets quite often. I can't imagine him without eyebrows, although, since he is so fly he'll rock it without a problem.

We had another bit of good news yesterday. I had been having blurry vision in one eye for a few weeks, though without other symptoms. This of course freaked us both out thinking that it might be optic neuritis and I was terrified to haul myself to the opthamologist's. But, they have an Eye ER (who has that??) and the lovely resident dilated my eyes to the point they are STILL dilated 2 days later, and informed me that I have dry eye and that my makeup is "shiny". (A particle was on my eye), but that my optic nerves are just fine. Whew!

Below is a poem Blake spontaneously came up with:

Waiting In Baltimore
Oh what a bore it would be
if it weren't for our Friends and our dear Family
When it's as cold as the doctors are bold
I just can't take any more
I've got to get home to 6th Avenue
for some time with our Friends and a Christmas brew
And as the days pass
and the holidays lapse
what a Gift we will find it to be
That Time in Baltimore

-Fly Guy
Wow, look at that white guy- just imagine his eyebrows are gone!

The White Cells are Dead

As I have warned others, the only thing worse than a patient who is a physician is the patient's spouse being a doctor. Blake informed me that I might want to tone down my, ah, intensity. I think of it as being an advocate. I was concerned at first that his white count wouldn't go as low as we needed because they started the immune stimulating factor a whole 12 HOURS early. I of course then charted all the other patient's blogs' lab values, and figured the average time until the counts rise is at the 4 day mark. So, I was hopeful we'd get another full drop. I need not have worried, as his counts went to our goal count today, 40 with NO neutrophils. My OCD knows no boundaries :). So now that we've achieved our goal, we are aiming for his counts to go back up so that we can get back home soon for Christmas.

Blake is yelling "Free Lemberg!" It is a chant that is being heard throughout the hallways. He also thanks everyone for staying in touch and making his imprisonment more bearable. He also would like plenty of yummy non-hospital food for christmas. This is the one thing Hopkins has let us down on. We think the food comes from the melamine factories in China- not good. See for yourself...

Jailed in the Hospital

Thankfully, Blake's infection seems to have resolved quickly with the antibiotics. He has not had any more fevers and is feeling pretty good. AND his MS symptoms have gotten better now that the infection is gone. His mind feels pretty sharp without that dirty film of MS fatigue and slowing. He does feel kind of anemic today, a bit short of breath, but it is to be expected. His white count went down to 80 and his Neutrophil count is too low to be counted. Looking at all the other blogs, it seems like his white count may still come down tonight and go up the following days from the growth factor. We want the counts to get as low as possible, I'll continue to harass everyone for those numbers. He is switching his antibiotic today, and will be able to leave the hospital once he has a picc line in his arm for the IV medications. Unfortunately, it's Saturday, so this cannot be done over the weekend and he'll have to stay until monday. He's pretty bummed about that. We have not been harassing them enough, apparently, to make them motivated to discharge us. If anyone has ideas, let us know!

Invasion

So after Blake had been feeling pretty well for a couple of days, yesterday he started to have a fever to 101 and chills with some nausea. Must have been caused by his zealous patriotism from Fort McHenry. We had planned to see a friend from college, but unfortunately, B's body had other plans for the day. So, we hiked it back to the clinic and he got a whole slew of tests including another CT scan, blood cultures, and started some heavy duty antibiotics (vanc and zosyn). I got caught up on every fashion do and don't during this time. Red plaid is apparently the IT thing now. Personally, reminds me of my jumper from when I was 5 years old. I suppose I was ahead of my time.

We returned home with IV antibiotics to give at home through his port, and watched the new batman movie, which was pretty good. He continued to have a worsening fever, so I called the doctor and they said to continue to keep an eye on how he was doing. But by halfway through the movie and after the second dose of antibiotics, his fever was trending downward, which was a relief. By the morning, he did not have a fever, but we did receive a phone call saying his blood cultures grew gram negative rods bacteria, which can be pretty serious. So, back to the clinic we went, but he's continuing to feel well without a fever, so the antibiotics appear to be covering him. The doctor came by and although he hadn't bothered to speak directly with us before (through the nurse practitioner prior to this), accused us of under-reporting his symptoms. Excuse me? We didn't so much as move without letting them know and I was taking his temp and pulse like every few minutes. He just kept talking about endotoxins repeatedly, which, yes, I understand are very bad. So, our egos bumped a bit, although I know he's just trying to keep Blake as safe as possible and is just probably upset that the nurse practitioner didn't give him the full picture. Now that that's off my chest.... They admitted him to the hospital and are going to take his port out to prevent the infection from restarting. He'll have to have a few extra pokes, but most of the medications that required a port have been finished. He can likely have a different kind of IV access in a day or two that will allow him to return home. He's still doing well and has not had a fever all day- yea! Although he is sleepy from staying up so late watching the movie.

All of this has kind of scared us, although, again, we got to it very quickly and the antibiotics seem to be making quick work of the infection- all excellent things. His white count plummeted last night and he's officially neutropenic, with a WBC at 400 and ANC of 350. Tomorrow, he will probably hit zero, which is our target. He'll get the factor probably tomorrow that will make his immune system come back faster than it would left on its own.

Thankfully, Blake's mom arrived yesterday to relieve my parents as this would be an impossible journey without the help. Another big thanks to everyone!

Sightseeing in a Mask!

Today I am feeling really good, I am happy to report. They gave me the day off from IPOP, the daily clinic for the neutropenic (those without an immune system). Ralph offered to take care of Alden and let Mary and I off on a date! We went to the American Visionary Museum of Art, which I must highly recommend. They have a whole floor dedicated to OCD artists! And I thought chemo was a sensory overload . . . http://www.avam.org/

Then we went to Fort McHenry:Birthplace of the National Anthem whose valiant defense of the fort by 1,000 dedicated Americans inspired Francis Scott Key to write “The Star-Spangled Banner.” I must say, with all the cannons and per the descriptions, it is the root of our national mojo.

Taking a walk, even with the mask, was great and the weather was nice and mild. I hope for a couple days like this before the full anemia sets in. Anyhow, most likely I will be headed home in 10 days so a little anemia doesn't concern me at present!

Day 2 Status Post HiCy

Here are a couple of pictures that we snagged from my mom's camera. Alden is faithfully brushing the apt with my hairbrush to keep it clean. Blake is putting his best 'I'm not ill" look on. He is thankfully better, and home now.

Yesterday was nice. Blake got to come home and our friends, Adrienne and James came to visit. We had to be good around my dad, though we had fun and got to discuss our girls weekend in greater detail. James and Blake are soo excited for this.
Last night was full of excitement. I woke up to Blake whispering " I have blood in my urine" in my ear in the middle of the night. I do not like to hear this, especially while sleeping. I am a certified MD, so we of course, called the doctor on call, who was fairly blase with our news. Blake had fears of having his bladder electrocaudered, but in reality, he just needed to drink more water. And so he did. He drank nearly a gallon while watching Lord of the Rings. Just after I fell asleep for a bit, Alden awoke, full of life and vigor. It was 5:30 or 6, and he had been sleeping essentially since 2pm yesterday. He thinks he is on London time, though I don't have an explanation for that. We went into the clinic, where we confirmed that Blake is fine, although his counts are appropriately dropping. His white count is in the 4,000s from 8900, so he has a day or two to enjoy Baltimore with his cool N95 face mask.For those of you in the know, this mask blocks spores and other nasty stuff from entering the body. It does its job so well, that it even blocks most air from entering. I took him shopping at Safeway today in it, and we got through the line in no time. Probably, by this weekend, he'll be at the lowest count, 0, and then the only way up is, well, up. Blake is feeling well today, and would write this entry, but since he stayed up all night, is now sleeping. I will be following now.

Home

Today was a very interesting day. It actually started last night when I requested this little medication called Ambien to help me sleep. After waking a few times to get my vitals taken, I fell into a deep deep Ambien nightmare. In this nightmare I was a child trapped inside the upstairs of a very tiny room in a home, but managed to finally break free of this by falling down the stairs and being unable to move in my bed. I then woke to the ill feelings and felt terribly alone, as mary was not there yet. Just when I finished kissing the porcelin throne, (actually a plastic bucket), Mary entered to rub my back and make some tea. It was a rough day because the nurses were overworked and unable to attend to my every request. But getting an anti-nausea drug 1 hour late is WAAAAY too late. It was almost too much to bear, because I was afraid I wasn't going to be able to leave the hospital today. BUT, I felt better in a short bit, and they released me in the afternoon after I ate my way through popsicles, crackers, and tea. Now, I'm feeling pretty good, and very grateful the chemo part is over. AND I got to see Alden for the first time in almost 5 days, who I had missed so much. From now on, we will go to the clinic each morning to check my blood and give any needed medications.

Now the hard part begins for mary, as I no longer have all those nurses and will be ringing my little bell frequently. Oop, that's actually me, Mary writing, although Blake is denying this. Well, hope everyone has a good Monday tomorrow and has had a nice weekend.

Nausea Begone

Attention everyone, we have found the magic combo of anti-nausea drugs! Too bad it took this long. Seems an antipsychotic - haldol (and another variation of anti-emetic) was what was needed. I KNEW there was something off! Because of this, Blake is hungry for what else, Hot Wings! He's taking a walk and will be writing most of the post today. We're missing the grand wedding of Cheryl and Adam today, and are quite sad about this- we know it will be quite the night.

The person you know as blake is typing here. All I can think about (when not wretching) is how great it will be to feel normal again - like ya'll. Not eating for 4 days and puking more than Sarah, and having to fly across a 1/4 of the globe, and even, even being apart from Alden for so long is going to be worth it.

I will be able to hold onto the intertube a little longer , type without looking, and get by without naps or getting so medicated even the We channel is funny.

We are nearing the top of the hill and Mary is right behind me unfurling the flag of Freedom From MS! As my blood counts continue to drop the disease is slowly dissapating. Hurray!

I can't believe we have made it so far without eating for so long :)

All of my thanks to our many friends who have helped along the way.

Sincerely,

Blake

Day 3 of Chemo- only One More

One could say this trip has been sort of like a second honeymoon. His hosptalization began with me scrubbing his stark naked body with Chlorhexidine the night before to sterilize his skin while he sang the Outkast version of 'So fresh and so clean with that Chlorhexidine, so fresh and so clean.' It was at that moment that my father came out of his bedroom asking us to read his freshly minted Christmas Newsletter. There's always time for late-breaking photo journalism additions, Dad.
His first dose of chemo did not sit well with him, he was seeing double, throwing up, and barely conscious, asking me things like "what day is it?" Not good. Turns out it was a antinausea drug (among 3 given to him) that was responsible for this. Since then, he has been pretty good except for the hour afterwards he feels kind of sick. So the final dose tomorrow seems like not a huge deal. All the ativan they give him, though, makes him have dreams like he is in Aladdin's palace flying on a magic carpet ride. Today, I made him take a shower, and we walked around a little bit. The IV pole must come everywhere he does like a bad third wheel, but hey, it's giving him the good stuff. It also doubles as a convenient little shelf. I wonder if they would sell a version alongside the portable stool in the geriatric section of the airplane catalogue. Blake is ready to go to the nursing home afterwards, as he loves the hospital bed, all the great nursing staff, and relaxing medications. Really, in seriousness, he is handling all of this like a rock star.

Blake wanted me to tell everyone that he thanks you all for sharing your love and compassion with us. Obviously, he is way better at writing our anniversary card notes.

His immune system is still intact, and we won't see the drop in counts until 2-3 more days. So, we continue on our journey and hope it continues as well as it has so far.

Here We Go

We survived our red-eye flight to Baltimore with our 1-year old- he actually got 6 hours of sleep, and we got about one. We got in on Monday and Blake had 13 vials of blood drawn and a full body fat percentage profile completed as an outpatient. It wasn't all work, though. Our friend, Adrienne came up to visit and we also met up with his cousin and family, so we've been pretty social. They all brought toys for Alden, and his grandparents are taking care of him, so he thinks we've taken him on a wonderful vacation.
Today, we went in to get his Hickman catheter placed and were admitted for his first chemo dose this evening. The catheter is inserted into the big vessel near his heart so they can draw blood and give medications without needing IVs, etc. They used a pretty hefty dose of medications to knock him out, as when I met him in recovery he was very relaxed and has no memory of the procedure. What can I say, when Hopkins' people do something, they do it well. That was the scariest thing for him, so he's glad that's over and done with. Now, we're hanging out in his room and giving him tons of fluids before the chemo dose, but he should tolerate the first one OK. Especially as they are giving him tons of ativan and oxycodone and anti-nausea medications- he'll end up thinking the week was pretty fun! We left several of our technology crutches at home, but they are being shipped shortly and can post some pictures when it gets here. So far he's not delirious, so the later pics should be more entertaining anways. "Honey, there are not little people in the corner." It should take about 8 days or a bit longer for the immune cells to get as low as they are going to go, so it's a bit of a waiting game. We will at least be able to be at the apt after the 4th day here, so that'll be nice, although our room here is quite nice. We're in a single room and it's pretty comfortable with big windows and decent chairs. I'll just end by saying a huge THANK YOU to everyone for all your support. It has made all of this so much easier. Till tomorrow.

Getting Ready

Hi everyone, this is our way to let you know about our trip to Baltimore. I think this should be more entertaining and readable than my grade school diary, but then again, who knows. We are not going on vacation, but rather, Blake is getting a course of chemotherapy that will hopefully deliver a knock-out punch to his MS. His crazy and obsessed wife, which would be me, wanted to find something better than the 16-30% improvement that the current standard of care meds offer. I am now a supplement-MS-emerging treatment massive collection of statistics- anything for my awesome husband. If you get me talking about it at a party, you will likely find yourself in a deep comatose state. Here's a link to the Hopkins newsletter article that described the treatment in a pretty easy to read way. It's also from where I blatently plagerized the title of this blog.

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

Unfortunately, his MS has not been well behaved, but fortunately, it is therefore more likely to respond to this therapy. So far, half of the patients without taking medications afterwards have a sustained remission. Now, patients are taking Copaxone afterwards, which can act like a vaccine against MS, at least in mice and monkeys. In those patients, ALL are in a sustained remission at the 2 year mark.

He'll be getting 4 days of cyclophosphamide, a chemo drug, and it'll kill all (or at least 99.9999%) the immune cells that have been made during his life so far. It'll leave his stem cells intact, and they will reconstitute his immune system from scratch.

So this is where I fit in- I'll be cleaning like crazy, (which btw, is against my innate nature), giving meds and making whatever food sounds palatable. I will even give foot rubs, but this is a special occasion. We'll have the help of many people, of course, including our families who are coming to help out, and our local area friends, Adrienne and James, who got us our sweet diggs and are loaning their car. THANKS GUYS!

So, this week, I will be anticipating any childproofing needs (outlet plugs, thick padding, etc.) and getting packed. We'll get in on Monday, and will start the procedure on Wednesday. I'll keep this updated, so that you too can feel sympathy for nausea and vomiting, but also feel jealous of his sweet medications.