New voice--Meret Oppenheim here.

I live in New York and am a friend of Susan and Dan's. Susan asked me to act as a liaison to friends and relatives for the next few weeks so she can give all her energy and attention to Dan. Aside from posting health updates, my main function will be to act as a sort of traffic coordinator.

Dan would like visitors and the next two weeks will likely be the best time to see him, since he'll be too sick to see people after the upcoming round of chemo. But unannounced visits are tough on him. To get around that problem, if everyone could email their available visit times to me, I'll make sure that visits are spread out so Dan can handle them.

Visiting hours are from 8 a.m. to 8 p.m. If at all possible, try to allow at least an hour for your visit. Although actual face time with Dan will probably be short--5 to 10 minutes, maybe 15--he may be resting or undergoing a procedure when you arrive and unable to see you immediately. If you bring a book or laptop to pass the time, both Dan and Susan will feel more comfortable about not having to be "on" if the timing isn't perfect.

My phone number is 914.714.0217 if you'd like to call. Otherwise, send email to funwithmeret@hotmail.com and I'll do my best to set things up asap.

Post from Susan.

Well, just like Dan's disease, these posts don't get any easier to write. As has been the pattern these past few weeks, Dan was re-admitted to the hospital yesterday (Sunday the 29th) for dehydration and constant nausea. He feels a bit better now, but the news we did not expect came earlier today.

Although the preliminary result of his last bone marrow biopsy was good and showed Dan was still in remission, the final result showed more leukemia. This means Plan D (I think), which will be more intense than any of the previous chemos. Assuming he starts this round in the next few days, there will be about a 2-week period where Dan will feel ok/bad instead of terrible (so probably into the 2nd week of Jan.) It would be nice if people came to visit him to lift his spirits, but he is asking again that NO ONE drops by unannounced. There are so many factors--tests, napping, general feeling bad--that might make a visit bad timing.

So if you'd like to come for a small chunk of time (say 10 mins or so), please contact me, Susan, via email or cell. I have a Blackberry so I'm always able to get your emails or texts even if I can't pick up the phone. I will always let you know exactly what Dan wants and needs.

As one Nurse Practitioner said today, we are in "miracle" territory, so please put your thoughts and prayers into overdrive. It does not go unnoticed. I always read Dan your blog posts if he hasn't checked it, so write something good and I will pass it along.

With gratitude,
Susan
cell: 646-637-xxxx
email: susanmfritz@gmail.com
*emails/texts preferred

I've been feeling very sick since last I wrote, but the plan is still to move forward as planned with the transplant. Since the last post, I ended up back in the hospital for a few more days. It's difficult to stay hydrated and my hemoglobin (red blood cell) counts needed to be replenished, but they let me out of the hospital for Christmas Eve and Day. There are a few more details to iron out so I don't know the exact date yet, but I will soon. Susan and I visited the floor where I will be for the duration of the transplant and it looks very plush (as NYC hospital rooms go).

More to follow as I know it.
Happy Holidays

These next few weeks will be busy ones, filled with tests and preparation for my bone marrow transplant, which is still scheduled for the first week in January. I will not be seeing any guests this month, as I am trying to minimize the risk of infection of any kind. This is a serious problem for people in my situation.

The transplant hospitalization will last at least one month, including chemo, radiation, and the transplant. Following that is a very long period of recovery at home (up to nine months), during which time I will be seeing and doing very little outside of the apartment. In other words, see you all next fall.

Here are two sites that will direct you to information about the transplant.

*www.marrow.org
I am getting an "Allogeneic" Bone Marrow Transplant

*www.mskcc.org
Memorial Sloan-Kettering Cancer Center's site

Keep sending your comments to this blog or to Susan's email address. Thanks.

I'm back at home after 2 more weeks in the hospital (mostly due to dehydration and nausea). I have a busy month ahead of doctor appointments and tests in preparation for my bone marrow transplant, which will take place around the beginning-to-mid January. They have lined up the specific donor who will go through a 5-day donation period at Sloan-Kettering so that the doctors and hospital have full control over every aspect of the donation process.

Because I had one more round of chemo, my immune system will continue to be very weak. It's important that I limit my contact with people/germs for the next month.

Thanks to everyone for their continued thoughts and prayers. Dan

The results from the Bone Marrow test last week were very positive. The most recent chemo seems to have worked very well. I will most likely go directly into one last round of chemo and then into the Bone Marrow Transplant after recovery. There are a few specific donors lined up, so that part seems to be taken care of already.

For now, I am in the hospital for a little while fighting nausea and dehydration. That will sequey into the chemo and then I should be home for a short period of time.

Well, folks, another post that helps you to understand why minute-to-minute updates are impossible. As hoped for in the last post, Dan was able to go home this past weekend for a day and an evening. It was wonderful to have him home. Both of us slept most of that time. I also did some piled-up laundry. It was nice while it lasted.

Today was a scheduled checkup that found Dan dehydrated and short-of-breath. Although the doctor was reluctant to tell us, he said Dan would not be going home in such a condition. So, after carting home a suitcase and more 2 days ago, Dan is again checked into Hotel Sloan. Perhaps he'll get to go home soon again, perhaps later. We'll have to see.

It's Dan's 30th birthday on Wednesday, and as one nurse said, "there's nothing to say" about the unfortunate timing, but the point is to get him well, so he'll be sleeping most of his birthday at the hospital instead of at home. I am guessing he still won't be up for phone calls, but I think it would be great to leave him a message wishing him well or singing "Happy Birthday" in the key of your choosing. You could also send him an email or reply to this blog. Believe me when I say he doesn't want anything in particular for his birthday, but it does mean a lot for him to know people are thinking about him and he'll be happy to talk once that's possible energy-wise.

Thanks again for passing along this blog to friends/relatives who'd like to know what's going on. If Dan still doesn't feel up to posting, I promise to update it more often. xoxo Susan

Good news coming from "guardedly optimistic" people: Dan might be lucky enough to go home sometime this weekend or next week...(perhaps in time for his birthday)!

This latest round of chemotherapy worked some magic on those pesky "blast" or leukemia cells. Since we are fortunate enough to live a cab ride away from Sloan-Kettering, the doctors agree that 2 months is enough time in the hospital/jail and Dan should be able to safely receive whatever treatment, transfusion, etc. he needs outpatient. Then, yes, it's still on to the required bone marrow transplant. I will let him write more when he feels up to it, but this news was too good to keep to myself!

Thanks as always...
Susan

From the fingers of Dan: Long time, no typing.

Rule number one: listen to everything Susan says.
Rule number two: Susan is once again the conduit for all back-and-forth information. If you don't have the Internet (read: about three of you), you'll have to wait for your updates by camel back as usual. Step up to the 21st century, please.

My condition is poor and unpredictable. That's why I insist that no one makes any surprise visits (exempting the old TF bunch). Surprise visits do no work with the hospital, and I don't like them. I don't want to throw up on your Barney's parka but...well maybe yes I do...but either way, it's easier for you to give Susan a quick ring. I also expend a lot of energy doing easy stuff like standing. No offense, but I am not going to waste the rest of it talking to you (unless your name is Susan).

Recent summary of my condition:
1) lots of nausea and vomiting
2) complete loss of appetite (I had some Ensure today)
3) lots of physical unsteadiness (I fell down once)
4) I can't even count how many days I have spent in bed

As Susan describes in the chemo regimen, it shouldn't take "too" long timewise, but it's just abother thing to get in the way of finishing this ordeal.

Thanks again to everyone who has expressed their care and well wishes.

Dan

Thank you all for your outpouring of support--kind thoughts, well wishes, and brilliant writing. I have saved all of these messages and even read a few aloud to Dan.

He just finished his first day of chemo a few minutes ago. It will go as expected: 5 days with a 2-hour drip on days 1, 3, and 5. Then 2-3 weeks in-between before they test his bone marrow again. He may need another round of chemo and/or another type of chemo after that, but we'll have to see how he responds to this first.

Since I'm a "one day at a time" kind of gal, the goal today is to make it to the Halloween edition of bingo on the recreational floor. There are prizes! So far during this 6-week stay Dan has won a Ralph Lauren bath robe, 2 Brooks Brothers ties, Tommy Hilfiger cologne, and various nick-knacks like a tie-dyed Rubik's cube and soap. I used the soap. Like he said to me, only at Sloan would you get a designer bathrobe...more later.

Susan

It's Susan again.

I am writing to update all of you with the most recent news. Dan's scheduled bone marrow biopsy came back showing that there is still a significant amount of "blast" cells in the marrow. In other words, the chemo was not effective in treating his leukemia. I just spoke with the team of doctors here at Sloan and they will be turning to a "Plan B" round of chemotherapy, using a drug designed specifically to treating resistant ALL. Don't ask me what it's called or how to spell it since I have yet to get those details...it's possible it starts with "l". There will be 5 days of treatment followed by recovery (I don't know how long yet, but it will depend on a bunch of factors). By the way, there is at least a "Plan C" as well.

Dan has been feeling nothing less than terrible, but I know him well enough to know that at his core he still has hope. Just as it's difficult for me to watch him in pain, I know it's also difficult for those of you who are far away or feel a sense of helplessness. All I can say is that help comes in many forms. Reading this blog and staying informed helps; sending cards or messages helps; keeping us in your thoughts helps. I would like to thank all of you for this and more. You have enabled me to sit with Dan for entire days, to be his personal nurse/clown, and to do so without fear of eviction and while appropriately caffeinated!

I will be updating this blog periodically until Dan feels like doing it himself. In the meantime, please check this blog and encourage others to do so if they would like updates. It is designed to help both of us focus on his recovery and expend a little less energy keeping friends and family updated. It seems that every patient on the floor has a similar blog or website and they have all found it to be an invaluable resource. Also, don't panic, it's not like I'll be out of contact--just know I have a Blackberry so I'll be checking emails/text messages a lot.

Much love and appreciation,
Susan

Susan is dictating for me:
I am still in the hospital. These last two weeks have been the worst two weeks of my life in the hospital. That doesn't leave much time for phone calls to chit chat. My blood counts are slowly coming up which hopefully means I will be leaving sooner rather than later. In the meantime please do not visit me right now since I spend most of my day resting. For some happier news, I'd like to wish Grant a happy 30th birthday...celebrations to come.

I am very fatigued by the stay in the hospital, but all else is relatively postive. My blood counts should start rising within the week, at which point the doctors will be able to start testing to see whether the chemo was effective.

The past week has had its ups and downs. I receive a variety of antibiotics every day to fight and prevent infection. I've had a cold for some time now, but that is not much of a problem at the moment. My biggest issue currently is probably some pain in my legs due to the fact that I have been off of the steroids since being admitted. That kind of pain can linger for about a month, but I have plenty of pain medication to help with that.

I will be in the hospital about another two weeks, after which (assuming all goes well) I will return home for a brief recovery period. So, for those in the neighborhood, feel free to continue to stop by. I may have a homemade trinket from the arts and crafts center that you can take home and cherish.

I had a cold that developed into a nasty fever of about 103 degrees, but some antibiotics and lots of cold packs beat it down. It was actually quite amazing how quickly I was able to recover. And so this is exactly why I need to be in the hospital for recovery as long as I do.

I actually finished 13 rounds of radiation (last Tuesday) and went back to the hospital for chemo. It was slightly premature, as I was checked into urgent care in the middle of the night on Wednesday morning in the AM. I was experiencing a severe amount of pain due to a massive upswing in my blast cells. Translation: the cancer was giving me lots of unprecedented grief, so I came in early and got lots and lots and lots of pain medication. I started chemo last Thursday and finished 5 days of that just the other day. I will be recovering in the hospital from here on out. It is almost inevitable that I will get a fever/infection during this time, which is why I must remain in the hospital under close supervision. I will also be undergoing various tests, including more bone marrow tests and spinal taps. When it has been confirmed that that cancer is in an acceptable state (remission), I will move on to the bone marrow transplantation.

The side effects of the chemo have been very manageable this time around, and I am incredibly grateful for that. So, if anyone is interested in stopping by and saying hi during the next few weeks, then please do so by all means. I am in 1232A (12th floor) and will likely remain there the whole time. I get around the floor, so just give me a ring if I'm not in my room (646 637 3402). Sloan-Kettering is located at 67th/68th and First Avenue/York Avenue.

I will be sending out a "blood drive" request via the coordinators here at Sloan very soon. For those of you in the New York area, this is a good opportunity to give blood directly to me, if you wish. I will be getting many transfusions (red cells and platelets) this month. My red cell type is A- and platelet type matching doesn't really matter. If you are interested, please stop by when the email goes out to you. At the very least, even if you don't match me someone else on my floor will be in need of your help. For everyone else in the country, blood is always needed at your local bank/hospital.

As for bone marrow transplantation, I will try to get more information if you are interested in joining one of the registries. I am already pre-screened and match plenty of potential donors, so anything you would do would be strictly for the public good. It would be a big commitment, but of course, you people are nice, so that's expected of you by now!

Radiation is scheduled to be completed 9/15, and I will return to the hospital for one month on 9/17 if all goes according to plan.

HLA (Bone Marrow) matching was not successful for my brother and sister, so I will be matching to an unrelated donor for my anticipated bone marrow transplant. Initial searches show multiple 10/10 donor matches out there, which is very encouraging--it's just a matter of coordinating the whole complicated process. The donor has to be healthy, available, still willing, etc., and I have to be ready to receive the transplant after successful treatments. There are also complications with insurance regarding the matching process, but I am confident that we will be able to address that. (Oddly, the very costly process of finding the donor is not typically covered, but the actual transplant is. There is grant money we have already applied for to help.)

For those out there who are feeling especially altruistic, as always you have the ability to get your blood tested and join the national donor registry. Do not bother trying to match to me--the chances are extremely remote and more trouble than it would be worth. However, I have been positively overwhelmed by the show of support from everyone willing to help save my life this way. What is probably easiest for everyone wanting to help in some way is to simply donate blood at their local blood bank. It is quick and easy (15 mins), and blood is always needed everywhere around the country. Donate platelets if you have the time (about an hour). As for me personally, send me your positive vibes. And send Susan Starbucks cards (we like Whole Foods, too)!

Radiation treatments are moving along. I have at least another 6 (once a day, all during weekdays), and then I should be ready to proceed to do more chemo. Until then, I have been feeling very energized by my medications (constant dosages of steriods), even though I continue to experience sub-normal blood levels, which normally keeps me off my feet. It's been a very pleasant artificial boost while I deal with the radiation issue.

Here's a quick example of how the steriods have been affecting my appetite by showing you what I ate yesterday. (As a point of comparison, the only thing I might eat for one week during chemo might be a bagel and some french fries):
1) 1/2 bag Fritos
2) 1/2 pumpkin muffin
3) 1 giant chicken Indian dosa
4) 5 hot dogs
5) 3 plums
6) 4 pineapple wedges
7) 1/2 large mushroom and olive pizza
8) 10 chocolate chip cookies, 2 glasses milk
9) 1/2 caesar salad

I am lucky enough to be able to do the next 10 treatments of radiation as outpatient, once a day for the next couple of weeks. That will allow me to go home every day when I'm done as long as my health remains in decent shape (no fevers, infections, etc.). This plan may change, of course, but it will be nice to stay home as long as possible before my next, rigorous regimen of chemo after the radiation is done. So, for now, I'm checked out of Sloan until later this month.

I have completed numerous additional nervous system tests this week and am prepared for brain radition for the next 2-3 weeks (10-15 cycles at 5 per week). The side affects should be largely manageable. The reason for the radiation treatment is to remove a thin film of leukemia that has developed around the brain. Leukemia does very poorly against radiation, so the treatment should be very successful. The dosage I will be receiving is roughly half of someone with brain cancer, so there is very little risk in getting more than the brain can handle. It's just enough radiation to enhance my superpowers.

I will be taking (and already am taking) drugs to shrink and stall the growth of the rest of the cancer until I can proceed with the previously scheduled chemo. Once radiation is done, the high-dose chemo plan will be happening right after that.

My news changes quite a bit these days, but the basics are this: I will be in the hospital for all of September, probably most of October too, getting treatment to prepare for a bone marrow transplant. My brother and sister have been tested, but I am still waiting to see if they are a match. Each has a 25% chance of matching, and the match has entirely to do with white cell matching (as opposed to red cell, like AB+). If they do not match, I will be receiving bone marrow from an unrelated donor pool.

I will be receiving a very heavy dose of chemo and likely doses of radiation (12) to prepare for the transplant. Then I recover in the hospital and at home, followed by the transplant, which will take many weeks in the hospital (mainly due to immune system recovery time).

All treatment is now through Sloan-Kettering, one of the best cancer centers in the country. I have a good room and lots of space compared to NYU, so that's the good news. That's all for now.

I suffered a major setback in my treatments during my most recent round (last week). According to several tests and scans, such as a nuclear medicine scan called a Gallium scan, the cancer shows a recurrence in my bones, meaning that there is now a strain resistant to my current treatment plan. That means that my treatment plan doesn't work anymore, and I will need to consult with my oncologist and several other doctors at Sloan-Kettering (and anywhere else) to determine an alternative approach. I will probably require a bone marrow transplant--details to follow when I know more. While this is bad news, there are still options and other kinds of chemo that could do the trick. This is surprising to me after all of the success up to this point, but considering the size of my tumor when treatment started, it's actually not all that unusual to have difficulty wiping out all of the cancer cells. So, for now we're back to an uncertain place, but it will make for a more interesting made-for-tv movie when all is said and done.

I feel like writing another substantive post. I will start with a simple bit of news: my brother's apartment nearly burned to the ground yesterday. He lives on the second floor of a three-story building, and the third story no longer exists. When he called me yesterday and told me this, I couldn't help but wonder what other fun news will be in store in the second half of this year. Luckily, everyone (save someone's pet bird) is fine, but seriously, I'm wondering who is playing all these jokes lately. It upsets me to think about it, which is sad because he's the one who just had his apartment destroyed.

On the cancer front, I feel okay. Sometimes it feels like my body is running on burnt garbage, and other times I find a comfortable spot in bed and just stay still as long as possible, savoring that position as though I'm just having a normal nap on a normal day home from work. It doesn't last long, but it lasts long enough, and I'm glad when it's not drug-induced comfort.

I guess I can understand why some people become dependant on their medications, but for me the medications are a sign that something is terribly wrong. Even something as benign as a glass of wine is a drug I avoid, because I want to feel better, not worse. The last thing I want is to induce sick feelings. That being said, I sometimes have a glass when I can stomach it. Some people talk to me about doing rounds of shots when this is all over. Well, I won't be doing that, but I will watch while sipping a margarita. Probably a frozen margarita with an umbrella.

Now for some hypothetical questions and answers:
Q) Would you rather have a finger stick, a peripheral blood lab (from your arm), IV blood draws, or blood drawn from your Mediport?
A) Excellent question--I've had all of these done countless times. If the Mediport is already being accessed (meaning there is a one-inch needle already in my chest), that is the best. The pain is already over at that point.

Q) What is the worst food you've had in the hospital?
A) Tough call--I don't really eat the hospital food anymore, because I prefer to keep my stomach's contents in my stomach. I would have to say the fish in marinara sauce ranks up there.

Q) What is your preferred brand of ginger ale?
A) Easy--White Rock, sometimes diet sometimes regular, though that may be a little too sweet for me anymore.

I am about a week behind on my treatment schedule due to low platelet counts last week, but I feel relatively well even after having just gotten out of treatment last night. I survived a roommate who spoke frequently on the phone about "the Feds" and "snitches." Luckily, no black cars showed up after he left.

A recent PET scan showed residule scar tissue and dead cancerous tissue in my body. This is apparently normal and can show up for quite some time (even years). No causes for alarm.

I look forward to seeing the Dark Knight when my blood counts are back up. If it's as good as Wall-E, I will be satisfied.

I'm doing fairly well after about a week out of the hospital, though I just spent 8 hours getting a blood transfusion. This cycle is going much better than the last one. Not much else to report. Luckily, I will be in good shape and out of the hospital for the 4th of July.

Where to begin....

Treatment was more unpleasant than usual, simply because I lost my appetite immediately. But the worst (and still continuing) struggle has been recovery this time. I was in the hospital for three days this week on hydration, nausea medication, and lots of pain killers. This was all a direct result of my second lumbar puncture from the most recent treatment. So, what again is a lumbar puncture? It's the spinal tap I've referred to previously. The doctor takes a big needle and injects chemo into the nervous system via the lower back, while also taking a sample of fluid to make sure everything is still cancer-free. Sometimes, there is an imperceptible "leak" of fluid from that puncture. This causes more--and more severe-consequences than you might imagine. It caused severe headaches and back/neck pain for me a couple months back. That's especially true when anyone with this problem is more vertical than completely flat. This time, think instant stomach flu in addition to that. I'm back home now and eating normally again -- anyone need some spare painkillers? I'll cut you a deal. So, the next time you want to crush your enemies without them really knowing what hit them, knock them out and give them a spinal tap. They will be bedridden for a week and won't be able to figure out why.

What else can I relate? How about a little Q&A:

What shouldn't you say to someone with cancer.
One of the guys who works the desk downstairs has a wife with cancer. He is clearly concerned about it and asks about my situation all the time, too. But he made the mistake of being completely misguide on this issue: he asked Susan the question, "Did Dan work out before this?" Susan replied that I actually did a little bit, "Sure, why?" "Because I told my wife that maybe she wouldn't be so wiped out from the chemo if she had already been in shape before she got cancer." Wrong. Chemo is incredibly harsh chemical treatment. It's essentially poison that brings you to the brink of destruction in order to kill something your body won't kill on its own. Don't ever tell someone with cancer that they are essentially ill-prepared because they didn't use the Stairmaster enough. It's just not true. And don't tell them that anyway.

What should you say?
You should say, "how can I help?" and then help them when they give you the answer. I met a guy in my most recent treatment session who was very appreciate of his well-wishers but who wasn't interested in their "I know what you're going through speeches." He liked me, however, because I actually did know what he was going through. Incidentally, this guy was from what I'll call a "very" Jewish family from Brooklyn, which made it difficult to understand his "yinglish" (yiddish-english) at times. Anyway, they brought so much food for Shabbos dinner on Friday night, I didn't know whether to laugh or cry for him. He took it pretty well, though, and ate a fair amount. No one in chemo will ever ask you for lots of food--maybe afterwards but not during.

That's all for now. Have a good weekend!

Lots of people ask me what I do with my free time these days. I tend to avoid going into detail when I answer this question, but since I haven't written a substantive post in a long time, I would like to give you a "Day in the Life" of Dan Fritz. It's challenging for me to talk about how I am doing in terms of physical condition day to day as opposed to what my prognosis is, since my physical condition is very rarely anything approaching pleasant. Ever since my fourth hospitalization for treatment (i.e. the second full "cycle"), my prognosis has been very positive. This is something for which I am indescribably thankful. The chemo therapy has been effective at combating the cancer, and I am confident that I will (to put it bluntly) survive and recover fully, never to deal with this type of cancer again. But while saying that, I don't want to give the false impression that I actually feel well on a daily basis. This is merely being straight forward about what it's like every day. You can see why I might not want to rehash that when talking to someone--I don't really want to think about it, and I don't want to kill the conversation by repeatedly reporting unpleasant things. Nevertheless, the following is my life these days. Maybe it will give you an idea of what chemo therapy is actually like.

My treatment works in three-week "cycles" (not to be confused with the treatment cycles, which are two hospitalizations, lasting about six weeks total). For all intents of purposes, part A of my treatment is no different than part B. Both last four days at a minimum, and the remaining two weeks+ are recovery. I feel horrendous by the fourth day in the hospital, and I can't get home fast enough. I usually haven't eaten anything (maybe some jello or pudding) for two days. I actively block all thoughts of what just occurred, because the thought of having to repeat that every three weeks is horrifying to me. I spend the next few days focusing on feeling better and being able to--say--drink water normally. What does "focusing on feeling better" mean? It means that I could literally lie in bed for six hours concentrating all of my energy on combating my physical condition (fatigue, gastro-intestinal trauma, nausea) and thinking positively. I also sleep/nap quite a bit at this point. Many times I don't even feel like watching television. As proven by my online Word Twist scores, my ability to focus and my hand-eye coordination is compromised for a while, in addition to simply having no excess energy to spend. My blood levels continue to decline for another week to a week-and-a-half after leaving the hospital, so it's not abnormal for me to actually feel worse with each progressive day of recovery during that time period. Blood transfusions are the only way to counteract that feeling, and I get those on a regular basis anymore. After blood transfusions--which could easily take 8-10 hours--I feel relatively good. Before transfusions, it can be difficult to get up and take a shower. If I am lucky, and I actually do feel well (relatively), I cannot leave the house, because my immune system is compromised. I stay inside and turn on my air filter. Even though my outlook is good and I am who I am, I sometimes suffer from anxiety in the middle of the night. I wake up sweating profusely, and I have negative dreams. I sometimes try to pre-emptively strike this by taking full, deep breaths before going to sleep. Other times, I simply wake up at 3:oo am and cannot get back to sleep for as much as five hours. This is not because I'm not tired but rather because I usually have something on my mind. Susan wakes up much of the time and it turns into a (generally comedic) middle of the night slumber party. Ironically, I count myself lucky when this happens. Some other problems I face: severe upper back tension, lower back pain and throbbing (from tests and a medication called Neulasta), headaches, bla bla bla. I tell you this simply because many people actually want to know this.

By the middle of my second full week of recovery, I feel able to get out of the house, and my immune system is good enough to allow me to do that. I meet with some people and grab some Starbucks. I do almost all of my book reading during this time, and I catch up on emails much more vigorously. I get winded if I walk very far due to deconditioning, but I still maximize my mobility at that time. I start getting ideas about pet projects I want to continue working on from months prior, and I even white board a few ideas. Like Word Twist, I play a lot more online words games and Sudoku to sharpen my mind. I eat almost whatever I wish, though I still typically avoid uncooked foods, including salads. During this week, I still have to go to the doctor a couple of times, but at least I don't have mid-cycle chemo at that point (that's usually the week prior if at all). And then...and then...I have to go back for another round of treatment. It's unavoidable for me to feel bad about this, like someone who is about to be whipped yet again. I engage in a tough mental battle on the Sunday night before re-entering the hospital, but I take solace in knowing that the treatment is curative. I then go through the hospital motions again and the cycle repeats itself. So, I don't recover over the months in the usual sense. I recover for three weeks at a time and start from square one over and over again.

Unfortunately, there's not much usable "free time" in what I just described. There is a constant physical and mental struggle, which I engage with as much vigor as possible without being foolish or needing to prove my strength of will to anyone. I relate this to you simply to inform. It can be said of this whole ordeal that "it is what it is," not good or bad but merely temporarily unlucky. Life-threatening, yes--but ultimately providing some clarity of thought and a little perspective.

So, how am I doing? I'm fine.

It's been a while since I posted, but there is nothing big to report. I just returned from a 4-day stint at the hospital, which means I have a good two weeks of recovery starting now. I received 4 units of blood, which should help prop me up for the next week or so.

After a rough round of treament and recovery this week, I am feeling a bit better and was enjoying some of the sun outside today. The tulips are out, and I would recommend a look. Tomorrow brings another blood transfusion and mid-recovery dose of chemo (just one day of treatment). This weekend should be pretty good once my blood levels stabilize.

By the way, it should say "4/14" below...

After another two units of blood last Monday, my condition improved late in the week. This weekend was very enjoyable, especially with the good weather, and tomorrow (3/14) starts my next round in the hospital.

The second half of my week was less than desirable, prompting a blood transfusion of three units of red bloods cells and some platelets on Saturday. After that all day episode, I have another unit or two on Monday (4/06). I am hoping to feel better thereafter.

I have completed two full cycles of chemo treatment (four visits), and all of the news is positive. Additionally, I may hold the hospital record for consecutive number of times to get the window spot. That's better luck than you might think....

This round of chemo involved no additional testing or scans, so my stay was relatively uneventful in a good way. I received two units of blood before leaving the hospital, so my recovery is going better than ususal. Again, the main help there is to combat the anemia that results from treatment.

Some notable roommates thus far: 1) High school English teacher who lived in French West Africa for three years, 2) Psychiatrist from Montreal, and 3) Hispanic Roman Catholics with 20 simultaneous visitors.

More good news -- PET scan results showed that the treatment is working very effectively against the remaining cancer. I'm feeling fairly well, with the exception of some sleeping trouble and loss of taste. I have a blood test on Monday (3/17) to determine my next hospital visit.

Good news - the cancer is no longer present in my bones. That's a fantastic sign that the treatment is working as planned.

I received another three units of blood before I left the hospital last week, which is really boosting my recovery and preventing further anemia. My energy level is much better than after the second round of chemo, and I have no massive headaches from the spinal tap this time.

I will be in the hospital for four to five days starting on Monday (3/3). I'm crossing my fingers for the spot next to the window....

Today is one of the good days. I had a severe headache for about 1.5 weeks as a result of the spinal tap I received during treatment. That has finally subsided, and I am able to walk around the apartment without any trouble.

I also had another blood transfusion on Tuesday to increase my red cell counts and get me out of the anemic zone. White cell counts are good, which means that I should be returning for round three of chemo soon. The current estimate is that I will need six rounds of chemo, which puts me at the halfway mark. We'll see.

It turns out that the second round of chemo left me anemic (low red blood cell count), so I needed a blood transfusion yesterday when I went to the doctor. This is not unusual, considering the aggressive administration of the chemo. The transfusion seems have gone well, which will not only help me feel better but will also allow me to get back into the hospital for treatment on schedule. I have a follow up with the doctor on Monday (2/25) to reassess blood levels.

I underwent a pretty rough second round of treatment last week, staying in the hospital for four days. I keep getting old men as roommates, all of whom are incredibly needy and lack a basic understanding of their own illnesses. This has been a challenge in and of itself.

Recovery has been slow and difficult. Until today, I was incapable of sitting upright for any prolonged period of time without developing an epic headache. Even now it's tough, but if recovery goes anything like last time, I should be feeling much better in a couple of days. Susan aided my recovery today by breaking the rules and giving me some Coke (not even diet). It's probably the best Coke I've ever had, though two days ago I wouldn't have even wanted a sip.

Only a bit of fuzz remains on my head -- maybe I'll upload an image soon.

I randomly started losing hair today. If I'm lucky, I won't have to shave for a while....

2/8/08, Friday - My blood results are positive, including my white cell count, which means that I am ready to go back to the hospital for round two of chemo next Tuesday (2/12). I will be there at least three days. The second round includes different drugs than the first, and the main one is called methotrexate, a drug that basically stops yor DNA from replicating.

Hello friends and family,

The sad news I have to report this past month is that I have been diagnosed with Lymphoma, a “blood” cancer that originates in the lymphatic system. This type of cancer is very serious, but it’s also very treatable relative to some other cancers. This news came out of the blue when I went to the doctor to be treated for a cold recently—it’s certainly not something I would have anticipated. It’s also a cancer with unknown origins, so I am unsure how this happened or if it could have been prevented. Nevertheless, I am fortunate to have good health insurance and a short-term disability plan through work, as treatment for this cancer will require a significant amount of hospital time, in addition to all of my (and Susan’s) strength and energy. Treatment will likely take months.

Again, the prognosis is upbeat, and I am optimistic about the success of the treatment (chemo therapy). I have a fantastic oncologist (Dr. Perry Cook at the NYU Cancer Institute), and we have been moving forward appropriately against this aggressive cancer.

Thank you for your thoughts and prayers as Susan and I tackle this issue. It will surely change our lives, and I am looking forward to the flip side when this is behind us. Your good wishes are appreciated.

With love,
Dan

Some info:
Since the cancer is part of a system that circulates throughout the body, the cancer can show up anywhere at any time. This makes surgical treatment essentially impossible, which is why I am engaged instead in a very significant amount of chemo therapy. The chemo requires hospitalization for several days straight every few weeks. In between treatments, my body recovers from the damage that the chemo does, particularly to my blood. During this time, my blood counts are low and I am susceptible to disease and infection, so aside from the standard side-effects of the treatment, I must also pay special attention to avoid getting sick. One way I do this is to only eat cooked foods and avoid too much sugar, which can weaken the immune system. I also avoid dry foods (like chips) and drink plenty of fluids.

Currently, the cancer is present in my bones in several places and in the middle of my chest as a 12cm tumor. Treatment should contain that and eventually send the cancer into remission. However, my current treatment can just as easily target the cancer if it manages to spread.

How you can help:
The best way to help is to send me your good wishes. My physical condition changes quickly depending on what’s going on, so it’s difficult for me to call people or see anyone in person with any predictability. Just the fact that you drop me a line means a lot to me. I don’t expect anyone to try to relate to this situation, and I actually hope that you never can. Susan is my head nurse and Chief Operating Officer, so if you ever have any questions, just ask her what to do.

Brief Timeline:
1/11/08, Friday – I go to the doctor to get some antibiotics for a cough that hasn’t gone away in one month. Some people at work have had bronchitis, so it seems likely that I have something similar to that. I had actually had bronchitis as a kid, so I figure this is different, but I still hope for a magical antibiotic to help out.

1/15/08, Tuesday – My five-day antibiotic pack runs out, and I still have a cough. I’m very tired (physically) after a month of being sick. I have lost weight and am feeling generally depressed.

1/17/08, Thursday – Waking up exhausted, I call in sick and go to the NY Downtown Hospital ER to see another doctor. They bring me in pretty quickly since it’s not busy. They screen me and give me a face mask, thinking I might have TB. This is quickly determined to be inaccurate once a doctor comes in and starts asking questions. However, the doctor doesn’t know what’s wrong, so he orders a series of X-rays and a traditional CT scan, all of which takes several hours to complete. The X-rays show a mass in my chest and the CT scan confirms what the doctors now believe: I have lymphoma. The doctor refers me to the NYU Tisch Hospital in Midtown to see a surgeon about the fist-sized tumor in my chest. I go ahead and take the subway up to Midtown.

After a brief conversation with the surgeon, I am admitted to the hospital for surgery, a biopsy in my chest. I call Susan to let her know where I am, and she gets to hear the news upon arriving at my hospital room.

1/18/08, Friday – I have my surgery, which involves the surgeon taking a sample of my tumor directly out of my chest. They also install a “Mediport” (a device that essentially makes IVs easier) and a tube to drain fluid from my right lung.

Next Several Days – I also have a number of other tests over the next several days (both in and out of the hospital) in order to help diagnose the exact type of cancer. The fact that I sweat profusely at night leads them to think it might be Hodgkin’s Lymphoma, but after numerous tests and blood work, the doctors determine that it is an aggressive T-Cell Non-Hodgkin’s Lymphoma. Luckily, this type of cancer is very treatable. Unluckily, it requires a significant amount of chemo, administered over the course of several days straight each time.

1/25/08, Friday – My blood tests dramatically worsen, causing fears of major liver problems or other severe issues that could escalate beyond treatment very rapidly. A PET scan from earlier in the week also shows the presence of the cancer in my bones, which was unexpected. This prompts the beginning of treatment the next day.

1/26/08 – 1/30/08 – In the hospital, I undergo four straight days of chemo therapy, including the administration of Cytoxan for three hours every twelve hours and various other drugs. The fifth day, I remain in the hospital since I am suffering from nausea and generally feel terrible. The tube installed on 1/18 is taken out of my lung before I leave, since I no longer require the painful draining of fluid.

I undergo a series of further tests during this time: 1) bone marrow test, 2) spinal tap, 3) echocardiogram and MUGA scans (heart tests), etc. The cancer is not present in my spinal fluid/brain, and I receive a preventative dose of chemo to make sure it stays that way.

1/31/08 – 2/5/08 – Recovery from the chemo was very shaky at first. I am practically bedridden for four days. By 2/4 and 2/5, I am feeling much better and capable of doing things like check my email and take a walk down the street.

2/6/08, Wednesday – A trip to the oncologist shows that my blood levels appear to be improving. I am in pretty good shape and feeling almost normal. A further blood test on Friday will determine if I have recovered sufficiently to receive a second round of chemo.

Links:
http://www.leukemia-lymphoma.org
http://www.lymphoma.com
http://www.lymphoma.org