Monday, July 31, 2006

Turning a corner today?

Today has been a very long and very exciting day. I met with my attending's resident today and he had some news. Apparently I was going to undergo a follow up CT scan to confirm that whatever minor problem came up with the MRI last week had gone away. Also, he repeated what trish said the day before: my original, botched LP may have been messed up so badly they didn't get enough fluid for the test. Hence, all the pain I'd been through all week was worthless.
A little later, Dr. Wetzler (my new attending) came into examine me. He said I would get a cat scan today, and unless there was something weird in it, he would forego the LP. He said that for some reason there was something about me that made for a difficult puncture.
That's when I let him have it. Nice guy, but he wasn't about to blame me for all this. I told him, look. The first time I had a spinal tap back home in Binghamton, the attending brought in a neurologist, and the whole procedure took about 10 minutes. My attending in bingo did this because, even though he could have completed the procedure, he wanted to go as smoothly as possible. Now when I came to roswell, for whatever Reason Dr. Wang permitted her "fellow" to attempt the procedure. He sure as hell didn't know what he was doing, as finally after a half-hour of poking, he hadn't been able to get in and Dr. Wang had to (apparently unsucessfully) finish the procedure. I was getting to resent feeling like this student's guinea pig. The problem, it seems to me, wasn't me. The problem, I said, was with letting this fellow attempt a procedure he wasn't capable of/wasn't ready for or whatever.
That certainly got Dr. Wetzlar's attention. He repeated that the LP probably wouldn't be necessary, that they were doing the CAT scan as a follow-up, and if the scan was clear they wouldn't do an LP. He added that I would be VERY well taken care of if a new LP was required.
It was apparently very busy down in radiology today. I spent most of the afternoon sleeping, getting new platelets and waiting for a spot to open up in the cat scan area. Finally one opened, and I was whisked pole and all down to the basement for the scan. It was rather anticlimactic. About 20 minutes and 3 pathetic little scans later I was back upstairs on 5E, my unit.
Didn't see Dr. Wetzlar again, but the asian Nurse Practitioner came in and said everything was cool with the scan, and I was still on track for the original study schedule. This is great. I can expect very possibly to be discharged next week by that rationale.
As I was eating dinner a little bit later, Dr Minood from the bone marrow team came in. He asked if I had heard the preliminary news about the blood donor search. Apparently there are 42 likely matches for me, which means two things: the odds of my finding an exact match are almost certain, and because there is such a good chance of finding a donor I will likely qualify for a grant to pay for all or nearly all of the donor search costs. Don't know if I'll even need a bone marrow transplant, but it's really nice to know the likelihood of it making us go bankrupt just got quite a bit lower!
Getting tired but am happy and wanted to share the good news with everyone. This is the best day yet, and I'm feeling good again about my prognosis. My headaches are pretty much gone; I think I will take one more dose tonight of Oxycodon before going to bed, but that's just so I don't wake up with a headache or something in the AM. Hope all of you are doing well, and thanks for reading.

Saturday, July 29, 2006

Holy greetings, Batman! ...and other roswell pics



None of the nurses, doctors or other visitors can believe the almalgamation of cards on my hospital room wall. This picture hardly does it justice. Thank you so much for all the pick-me ups. Your notes encourage me whenever I'm having a less-than-perfect day. I'm gonna need a new wall!



My bed is the command center of the kensey empire. I handle all email and blog postings from this comfy, air cushioned perch. Just beyond my left hand is the remote control. I change the channel, turn on the radio and call the nurses for more of just about anything with the red-and-white nurse button.





This big green easy chair reclines with an extended ottman for total comfort. I eat many of my meals here, especially when soup is involved and I don't want to muss up the sheets. It is also a great reading spot, as the chair is just firm enough to keep you from falling asleep ater 10 pages.







All of my blood counts are extremely low during chemotherapy. One ingredient in blood, platelets, is so low that if I get even a small cut it might not stop bleeding without specialized medical attention. Believe it or not, during toothbrushing it is quite common to end up bleeding from the gums in several locations. These green sponges glued to lolipop sticks are called toothettes, and they allow for bleed-free teeth cleaning when combined with a special mouthwash for Lukemia patients. A small sacrifice for the cause, but what would I give for a normal, FIRM toothbrus and minty crest.

Fast times at Roswell High

Friday started as good day but turned not so good in a hurry. I had been taking my pain meds consistently, amd by the morning had started to feel like sitting up, doing emails etc. So I did just that. No one had told me to do otherwise. Made it fine through breakfast, fine through lunch, and fine through rounds with Dr Wang. She seemed pleased that I was improving, and Dr. Wang never seems pleasd.
So I continued the afternoon much like the morning: some sitting up, some lying, showering etc. About 2 p.m. My headaches just started to return. So I called for Marima the nurse and she got me more oxycodon. An hour later though, my head regained it's former achy fury. Sigh. So I laid back down, and rested, and of course it went away while I was on my back. Meanwhile, Marima was really encouraging me to walk laps around the unit after seeing how well I did in the AM. So finally, even with the gritty headache, I started to walk with Marima around the unit. Walking was OK, but my head hurt so bad that I had to get back inside and in bed after just one lap. I could barely keep my eyes open.
Marima, concerned, called the doctor. This is when things started to get wierd.
About an hour later, a usually nice nurse practitioner came in, aplogizing that she hadn't gotten my page earlier. Without even questioning me, this formerly unserstanding NP lit into me about how "you need to slow down, and "We don't want you to be walking around the unit. You are really sick; we want you to rest." She basically blamed me for the ongoing headache problems. I pointed out that I hadn't had the problems until the botched-up lumbar puncture, to which she argued was a separate issue. She then said I was right and to report the new symptoms.
How, exactly, should I report problem if when I do I get flak and blame for reporting new symptoms? GRR
So I just wanted that NP to get out of my face. After stewing in my own anger for a few hours, at 6 p.m. Dr Wang showed up at marima's request and asked what heppened. I told her about the new symptoms, and she kind of minimized them saying that "you'r really sick. You need to rest on your back for several days.
Meanwhile DI chimed in, pointed holes in Dr. Wang's cheesy argument that I was at fault, not the mized message nurses and physicians kept giving me for the past 3 days.
Dr. Wang, taken aback, acutally explained what the problem might have been, that I was probably a bit sensitive to the LP, plus my blood counts were almost at thier minimum. The combination of the two, she thought, was the reson for my crappy achy headaches and general phyiscal state. We left it with me promising to rest, seriousy rest, all weekend long, as she finally acknowledged some wrongdoing on her and her staff's part.
My figety, glasses-flicking ass, just wanted to get her the HELL out of my room!

Thursday, July 27, 2006

Bruised lumbar, bad headaches and 100 miles an hour

To recap the past couple of days:
Tuesday
Dr. Wang wanted to give me a lumbar puncture (spinal tap) due to some blurry vision and slight headachyiness I had been having. One of her fellows -- kind of like a fancy resident -- started the procedure. He really botched it. After a bout a half hour of him poking into my spinal column, missing, and poking again, sense took over and Dr. Wang finished the procedure. A spinal tap isn't all that comfortable of a job to begin with. The doctors poke a big needle into your spinal column and suck out spinal fluid. By the end of all the poking and prodding, I was pretty sore in my lower back, and seriously pissed off that I was some advanced student's guinea pig.

Wednesday
About 3 a.m., my nurse came in and told me I needed to have a platelet transfusion. For those of you who have ever been in the hospital, you will understand that these middle-of the-night interruptions are fairly routine. I've had platelets before, so it was no big deal. The nurse hooked me up, and, in about 10 minutes my central line area started to itch. Then my chest started to break out. And my legs, knees, feet, my face, everywhere. Bright red and white hives, hives so thick on my kneecap there were peaks and valleys and craters. I buzzed the nurse in, and he rather freaked. The charge nurse came in and said she would page a doctor. They knew exactly what to give to stop the breakouts, but couldn't administer it without a prescription. The nurse had to page the on call doctor THREE TIMES before getting a response. Meanwhile, I was really suffering. Big red welts and hives all over my body. itching and itching and itching like hundreds of bug bites. FINALLY, a half hour after I buzzed the nurse, they finally brought in intravenous benadryl, and the hives went away within 10 minutes.
How does this happen? Even though I have had platelets before, sometimes something in someone elses blood, even something they ate, will react with the donee, causing breakouts. For all future platelet transfusions I will be given both benadryl and hydrocortzone before hand, to prevent any possibility of reaction happening again.

Later Wednesday, I woke up with a splitting headache. What I found out is that this headache was from the lumbar puncture the day before. The doctor explained that this sometimes happens, and I should lie flat in bed all day long. FUN. True to her word, the minute I got op, sat up or went to the bathroom, I started to get headachy again. Though i took pain pills, they didn't seem to help...the only thing that helped was lying down.

Meanwhile, the doctors were actively pursuing a Bone Marrow donor for me, even though they aren't sure I will actually need a bone marrow transplant. It is quite a long process finding a donor, and if they waited to start searching for a donor when I needed one, it would be too late. I met with a financial counselor from the hospital, who explained a crappy thing about insurance companies. Though insurance will fully cover a bone marrow transplant (a couple of hundred thousand dollars), it would NOT cover the required testing of donors in the nationwide databank of typed bone marrow donors. Cost of finding a good match, the lady said with a straight face, are between $3000 and $30000. That's quite a range. So in the meantime the financial counselor lady gave me a financial aid package, which i need to fill out and hopefully will help me get grants and stuff to pay and discount for the search. The doctors have stressed that they will make a decision about the transplant before they start all the expensive testing on donors, and will narrow the search as much as possible so the costs are minimal. It's still a bit scary, and not something I really wanted to have to deal with when I was already feeling crappy.

Thursday
The same headaches and bed rest apply today. Trish, the nurse practitioner who is a good patient advocate, met with me, and I gave her an earful about the spinal tap. I told her that no one but an attending doctor or neurologist will be doing any spinal taps on me. I feel like my headaches must be related to the "fellow"'s botched job. Though she said that probably wasn't the case, Trish said she understood and my wishes would be shared with Dr. Wang.
Later on I met with Dr. Wang. She apologized for the botched job on tuesday, and said that she had thought the fellow would have been able to do better than he did. She guaranteed me that no one but an attending doctor or a surgeon would do the spinal tap in the future. This made me feel better. She also said part of my issue with the headaches is that I kind of gave up on the pain medication. I am supposed to now take my 10 mg of oxycodon every four hours, and the cumulative effect of those doses should knock out the headaches. She also said that right now my blood counts are SUPER low, so the headaches are a combination of the crappiness I should be feeling, and the lumbar puncture to which I am apparently very sensitive. Her orders were to "stop going 100 miles and hour" relax and lay flat for another day. That is really really hard for me to do!

Holy cow, that is a long entry. It's been a wierd couple of days. Hope everyone is doing ok at home. All in all, I am fine, but this headache crap has made me quite cranky.

Tuesday, July 25, 2006

I can use your help!

It seems like every time someone sends a letter, email or calls me on the phone, they want to know how they can help. Well today I found a real way people can help, if you're interested. I require platelets, the part of blood that helps clotting, on a regular basis as long as I am on chemo. If you like, you can donate platelets here at Roswell Park. The process takes about two hours from soup to nuts, and the good news is if you are an eligible donor, your platelets would be assigned to me for up to 2.5 days. If it turns out I didn't need any platelets during that time, the donated platelets would be given to another cancer patient. No platelets will be wasted, as they only have a shelf life of 5 days altogether, and they are a precious commodity especially here at the cancer center.

The donation does require that you visit Roswell; you cannot donate back home and have the platelets transferred here. However, you can be pre-screened by calling or emailing Patrick McGuinness, donor recruiter here at Roswell. His phone number is 716-845-8282 and you can email him at patrickmcguinness@roswellpark.org

Otherwise today was kind of a wierd day. I had a lumbar puncture (spinal tap) this morning. That left me feeling kind of headachy and lethargic most of the day. The good news is they are 95% sure there is no lukemia in my central nervous system. This was a concern because of the headaches and the blurry vision I have had. All signs point to good things, however, so I am happy about that.

Anyway, thanks everyone for your emails and phone calls and letters, and I look forward to talking to you soon.

Monday, July 24, 2006

High school biology lessons and chicken salad

Kind of a wierd day today. Woke up with a pretty bad headache and the blurred vision again, which was kind of wierd because I hadn't been reading or anything. The nurse gave me some oxycontin which helped with the headache and soon after my vision improved, which is good. Talked to the nurse practitioner and she wanted to consult with my attending-doctor-on-rotation, Dr. Wang. Dr. Wang has ordered an MRI for me today just to rule a few factors out. Apparently they just want to make sure there's no bleeding. Also I'll get a lumbar puncture sometime today or tomorrow just to confirm there's no lukemia inside the nervous system. They did that before at wilson but I guess they just want to make double sure, because of the new symptoms in the past couple of days.

As far as high school biology, I had a consult with the bone marrow transplant Dr. this afternoon. Apparently I do have an unusual "risky" genetic trait in the white cells. I guess it's 47 chromosomes instead of the 46 that I am supposed to have, plus some other random genetic fuzz. So the long and the short of it is they are going to get me on the list for bone marrow transplant just in case I might need it. The doctor said they don't really know if I need it now or not, but it's good to get on the list because it can take up to 3 months to line up a donor. If for some reason my ALL doesn't respond correctly to the chemo, they'll dump that plan and do the marrow transplant instead.
The good news is, as a white caucasian male, finding an exact match should be a snap. Interestingly enough, my parents can't donate, as they would have only half the match that my chromosomes would need.
Frankly, the bone marrow transplant procedure at first blush doesn't sound so terrible. Apparently it's even anticlimactic. They do a different kind of chemo on me for about a week, then they just hang a bag of donor blood and connect me up, and eventually it works its way into the marrow and hopefully will start growing the new stuff. I'd be in the hospital another 4-6 weeks, then have to stay in buffalo for another 100 days at minimum. The wierd part is, let's say a female donates to me, my bone marrow chromosomes will be XX, but the rest of my chromosomes will be XY. Apparently my blood type would change too, because that's where the blood is made (inside the bone marrow.)

Oh, and I had a really yummy chicken salad sandwich for lunch today. That's where the chicken salad reference came from. I know, a little random!

Sunday, July 23, 2006

Friends, family and a little blurriness

Hey all!

Today was a very busy day. Doug Camin and Kim Leonard came up last night, and then spent most of the day with DI and I. Doug and kim even took DI on a jaunt to niagra falls hard rock cafe, over which I am really jealous as the food sounded fantastic! It was good to see them anyhow.

In the meantime, I am fine. I am having some more blurry vision, especially when I use the commputer. Dr. Wang, who is my dr. while Dr. Baer is off rotation, says that this is normal due to the chemo I am getting. It's a little weird though, as I am a very visual person. Not much to do but rest my eyes when it starts to happen. In other news, they put me on potassium drip for a few hours today, as the chemo I got yesterday made my potassium levels low. Kind of a bummer, but I'm unhooked now and sitting very comfortably in my bed.

Did two stints on the treadmill today, 20 mins apiece. In general feeling good so long as I keep good and hydrated. Tomorrow is monday and things will go by more quickly, as somehow here there is more activity during the weekdays.

That's all for now. Oh, and I found out the ANCHOR BAR is only a few blocks away from the hospital here. My own special kind of torture: I am just JONESIN' for some yummy wings. In a few weeks, perhaps.

Saturday, July 22, 2006

My Bald head!





So here, by popular demand, I am in all my baldy goodness. What do you think? Apparently the word is I look good. It's a good day today. I'm getting platelets and blood clotting stuff and then chemo later in the afternoon. Vincristine is the nasty one which they push through my IV with a needle. But usually it hasn't bothered me too much.

Di is here today along with mom, and dad and the Jakester are on their way. I'm feeling really good today. I did have some blurry vision earlier, which can happen from all this stuff, but my vision is better now. All the better to watch golf, type on the computer and talk to my guests. Apparently my new temporary Dr., Dr. Wang, thinks I am doing too much at one time. She doesn't know what my usual day is like outside the hospital.

Anyway, I should get going 'cause lunch is coming soon and I want to be ready. Enjoy the day.

Matt

Friday, July 21, 2006

Boston creme pie and chicken fingers for the soul.

Boy they sure like to feed a guy good here. Had chicken fingers for lunch today and they were fantastic. Lots of barbeque sauce. It's been a pretty uneventful day today, except I have gotten a whole lot of mail. It's surprising who is sending mail, but is very welcome indeed.
Really emjoyed PT today. Kevin said I have the record for step-ups on the unit, which is encouraging. I think I'm encouraging my doctors because they seem to be reflecting back with smiles and words of encouragement. Would really like to get out of the hospital and onto outpatient care quickly as possible. All signs are going the right way as of now.
Well, if something else comes up I'll post again, but it's been kind of a quiet day. Diane's coming to visit tonight so that will be something to look forward to. I am eager to see her new haircut.
OH I forgot to tell you all: I cut my hair off last night. Actually Marima, the german nurse, cut it off for ms right down to the scalp. As soon as I can get a picture uploaded (waiting for a cord from home) I will try to post a picture of my bald noggin. It's really not that uncomfortable or embarassing. Feels like I have a little tiny-napped brush on top of my head. Wierd!
Anyway, a good but slightly boring day. I'll post again if anything else comes up.

Thursday, July 20, 2006

Free at last (from the IV machine)

Good day today. Doctors told me I could go off the IV machine as long as I don't have any medicines that need to go through it. For those of you unfamiliar, the IV machine is a pole on wheels with these fancy-looking motors on it that pump and infuse chemicals into me. It also gives me a saline solution (24-7) and has been tied to me since I've been here. Everywhere I went, it went. Had my workout with Kevin the PT guy and didn't have to be attached to the machine---felt great. Walked around the hall (6 laps) at a good clip without the machine after the workout -- felt great. I will do 20 minutes on the treadmill tonight before dinner and should sleep well. Just gotta keep drinking water to make sure I don't have to have fluids all the time. No problem as far as I am concerned.
As far as treatment goes, I just get another subcutaneous hormone today--no chemo. This is the stuff that helps the good cells grow inside of me, so that's a good thing. Got a lot of cards in the mail today, one from my former editor at the Express-Times in Easton. He sent it to me while he was on vacation with his kids and wife. Wow!
Thanks again to everyone for sending stuff. It's really encouraging.
Tiger has made a strong showing today at the British Open. Been watching since he teed off. Looks like a great course this year, dry and crusty and british and tough. Haven't been able ever to watch all four rounds of the British, so this should be fun (as long as TW stays in it) Way better than movies!
Anyhow, will talk to some of you tomorrow or today and will definitely write again in the blog. Keep posting!

P.S. Tiger just made an eagle putt at 18 to put him 1 within the lead after 18 holes. Awesome!

Wednesday, July 19, 2006

Subcutaneous Homesick Blues

Well, I'm not really homesick but am missing Diane, who left for home today. She'll be back on friday. Treatment today was kind of sparse. Two shots, one in each arm just inside the skin (Subcutaneous). One was a chemo drug, the other one a hormone to help the dying cells in the bone marrow regenerate. A steroid! That'a what it was. No trying out for major league sports for me right now!!!
Not a lot of side effects. Been working out twice a day, once with the awesome PT guy Kevin and once on the treadmill for 20 minutes. Keeps me going. Only thing I notice is my mouth is quite dry. Apparently the chemo affects how these short-term cells regenerate--again it kills the good with the bad. Don't have much of a sense of taste because of it.
Got a lot of emails today from the letter dad sent out from all ready. Amazing to see how many people care, even random customers one wouldn't think would take all that much of an interest. Must be a benefit of living in a small town. The steady stream of emails has been encouraging for sure, so thanks everyone and keep it up!

Tuesday, July 18, 2006

Donated blood makes chemo patients happy!

So, gotta tell you, getting two pints of blood in a day is really great! I'm feeling really good today due to two people's fine donations. Thanks people! Today was a good day...no chemo, but the blood and some other funky medications. My nausea is gone due to a patch behind my ear, so I've been eating steadily along. The physical therapist came in today and we did a bunch of things usually reserved for the outdoors. We threw a basketball inside, climbed stairs and lifted weights. That felt really good. Later today I'm going to try out the new swanky pair of black and white airwalks my mom sent. Di and I will use the treadmill to try them out.
Otherwise, i've been reading all afternoon. I got a new dressing for my central line: the other one was itching like a bastard and I'm really glad it got changed, though it did hurt at the time. And It seems like all the nurses here have a name derived from laura: Laura, laurie, lauren, leslie, etc. Too many l's! A temporary nurse for right now is named Mary but she just told me my night nurse may be one of the "L"s. Fun!
Saw Dr. Baer today (my head doctor) and she said I am doing great on paper: a textbook case. That sure made me feel good, too!

Monday, July 17, 2006

Hiccup* Hiccup*

Feeling great today,except I am fighting a case of the hiccups that I belive is due to some of the medication that I have been taking. They mostly affect me when I am sitting or standing up, but not while lying in bed. They have offered me meds, but it's not really uncomfortable or anything so I think I'm going to skip them for now.
Had another round of chemo today, the same I have been getting. Daunorubicin. It's a thickish red fluid that fights the cancer and turns my pee bright red. Kinda creepy.
Met with the occupational therapist today and she says I'm doing well, gave me some stretchy rubber band stuff to help with my muscles and a hand grabby thingy so I can chase after all the nurses...I mean keep my grip strength up.
Thanks to all of you who have been sending cards, emails and packages. Note diane will be starting to only be here on weekends beginning next week, so if you want to email her try her at msdibutterfly@hotmail.com or call her on her cellular phone.

Thanks again to all!

Sunday, July 16, 2006

Works like a dream

Feeling much better today. The doctor allowed me to have Ambien, a sleeping pill that really does "work like a dream," as the commercials say. This allowed me to sleep all night long without any problems, except the normal visit or two from a nurse wanting vital signs or drawing blood.

Spent another 20 minutes on the treadmill today. It really feels good to get up out of my room and get some excercise. Shorly after the treadmill Mike and Kathy Malloy (Father in law and Mother in Law) came up and took diane out shopping in buffalo. She's going to have a haircut, have lunch, and buy me some more button down short sleeved shirts. The short sleeved shirts are most convienient as I have the central line in my right chest and we can run the IV right up through the shirt.

Getting used to being here. Kind of waiting for the regular week when the weekday staff is here. They are noticeably better, even though the weekend people have been great.

Missing Star already, though my mom says she is doing well with the dog and the other kitties at Clover Dr.

Dr Baer met with me today and apologized for the debacle with the drugs yesterday. She thinks I will do very well and should be out of the hospital between 3-4 weeks. I had just one bag of chemo today, the drip only took about 10 minutes. Haven't had much of a reaction to it at all yet, though they say the drugs they are giving me have a lot to do with that.

Saturday, July 15, 2006

Agitation over chemo

Today about 3 p.m. I started chemo. There was a delay overnight due to some complications, so I met with Dr. Behr this morning and she gave the order. When they gave me the premedication for the chemo it gave me a funny feeling. As the feeling continued I began to get agitated in a ADD kind of way. Wasn't able to sit still focus etc. This continued for about 5-6 hours and is still lingering even after they gave me medication to fight it. They will change the meds tomorrow so I don't have this problem again. I will take a sleeping pill tonight so I can sleep, and hopefully I will feel better in the A.M.

Staff is very helpful except for my day nurse today who was very abrupt and quick to leave the room. I think I will request a different nurse the next time I talk to DR. Behr.

Very glad to hear from everyone as I had several e-mails today. Nice to have friends. Meanwhile Diane is an absolute Rock and I just don't know what I'd do without her. Guess I picked the right girl!

Email sent to friends and family

Hi all!

I'm guessing some of you have been wondering where I am and why I have been unavailable for the past few days. Here's the deal:
I have Acute Lymphocytic Lukemia, T-cell variety. This is a cancer that attacks young white blood cells in my bone marrow. I was originally diagnosed at Wilson Hospital in Johnson city after I first visited the UMA walk-in on Monday. I later went to the Wilson ER and was admitted. After 3 days of testing I was diagnosed by Dr. Khan as having this disease. He reccomended coming to Roswell Cancer Center here in Buffalo as they specialize in this disease. I could have been treated in Binghamton, but he said it would be much more effective for me to be treated here in buffalo, a National Cancer Institute.
Dr. Marie Baer is starting me on intravenous chemotherapy tonight, and it will continue for 3-4 weeks. After chemotherapy is complete I will be in remission. During remission I will continue to undergo chemotherapy on an outpatient basis, but will remain living in buffalo as it is important to be close to the hospital here if there are any complications. I will likely live in a long-term facility for cancer patients and their families called Kevin Guest House, where I will have my own apartment and an assigned caregiver.
Phew. Enough with the fun stuff.
I am feeling great and am very focused on getting the treatment started, getting better and getting on with my life. The staff here is as friendly as they are incredibly competent, and I feel I am in the right place for best outcome. I learned today that I will probably not require a bone marrow transplant, which has further heightened my spirits.
I miss you all already and would love to hear from you. Also, Diane has really been a rock to me and if you can think of any way you could help her I would really appreciate it. My parents will work at the business and I'm sure they could use some help too. Feel free to talk more to me about anything you feel comfortable doing.
Thanks again everyone, and don't worry too much about me. I am in good hands here and will turn out fine, God willing. It would be great if any of you could visit but I understand the distance is a bit of an obstacle. You may reach me by email here and I also have my cell phone (607)725-3910. I am starting a blog and when I have it ready I will advise you all of the location.

My best to you all
Matt Kensey

Wednesday, July 12, 2006

From Wilson Hospital 7.10.06 in review

Well, this is kind of wierd. I'm sitting here in Wilson Hospital writing out a blog. I've tried to do a blog before because (sorry Laura Roth...everyone else but you) I always thought blogs were for people who had nothing else better to do. Guess what: I now, truly, absolutely, inextricably have nothing better to do!
Monday I felt like crap. I had been feeling like crap: lethargic, slow to get up, tired all the time, only wanting to watch TV and sleep for awhile. You want an example? Sunday Diane was trying to finish her lovely planting work for the year. We still had this pile of dirt in the driveway. I had promised to try and help her get rid of the dirt, so after returning from some errands I started shoveling. The stuff seemed heavy, I was sweating in two or three shovelfuls, and DI eventually took over leaving me to cart the stuff back with my wheelbarrow. After a trip or two in back. I couldnt even do that.
It came to a head Monday, the first day back from our weeklong vacation. Symptoms of fatigue continued. Tiredness standing up for more than a couple of minutes. Tiredness walking. Tiredness lifting. Tiredness waking up. Tiredness everything. I went to work early that day to go through my emails, and left before the morning meeting. Why? Tiredness. It was time to go to the doctor, so about 12:00 p.m. off I went.
UMA's endicott Walk-in was pretty efficient. I got in and saw a doctor within about half an hour. After two blood tests and about an hour, she came back into the room. She said the blood test results were wierd. Low red blood cell count, she called it anemia. Super high white blood cell count, and low platelets. She told me if I were to get cut I might not stop bleeding!. She said the anemia could explain my tired spells.
This doctor looked confused, and I guess you can't expect much from a confused doctor. She didn't offer a diagnosis. She didn't offer a treatment. She DID say I should see a hematologist and made an appointment with one for Friday at 3 p.m.
The doctor also said if my symptoms got worse I should go to an emergency room. She kept confusing the words "hematologist" and "oncologist."
I asked for a copy of the bloodwork results and left. I was feeling a bit better symptom wise but had been feeling better even when I got there. On my way to Wendy's I called DI. She had never heard of such wierd bloodwork and sounded nervous.
I was eager to use my new grill and had bought some Lupo's Spedies and marinated chicken breasts the night before. It was shiny and new and, after some fussing with the gas tank started up right away. The grill got so hot, and the heat made me tired. I had to sit down three times during the 20-minute grilling session because I just couldn't stand up in front of the hot grill. The tiredness of outside followed me inside. Sweat dampened my back on the couch. My head ached. I climbed the stairs and the headache slammed around inside my head. I went into our bedroom and laid down. I turned on the AC and lied in front of it on the bed. My head pounded, I was coughing a weezy cough, I still was hot and I was very tired.
It didn't take Diane very long to convince me to go to the Wilson ER.
We had made a list of symptoms and paired it with the bloodwork from the UMA walk-in. We showed them that list at check-in and started to wait for a bed in Wilson's gawdawful waiting room. My symptoms had slightly improved and I was worried they would think I was faking. There was quite an assortment of people in the waiting room, the most memorable of this was a blonde single mother so proud of raising her strollered one-year-old herself she told an unfortunately pregnant 16-year-old girl how terrible and irresponsible the pot smoking, pot dealing, absent father was. She then told the same 16-year old her baby and the room how she was "so fucking pissed off" about how long she had been waiting and how it was "so fucking unfair" and how she was going to "fucking show them how to treat people" by filling out the UHS comment card in full.
Anyway, we finally got an ER room about midnight. I was going to be there for awhile.