ANC’s are coming back (200), white blood cells are up to 1.0, hemoglobin is up to 9.3 and only my platelets slipped back (to 106 – but still within a good range). Oh – and did I mention I did 10 laps today (so far) and it’s just mid-day?! So I need to work on doing stairs. We just put an order in for a (real) physical therapist to help me with that. Hopefully, she’ll come by soon for my first stair-climbing in 2 months.
Woohoo! 192 ANCs just reported. Body on the mend. Maybe 420 was too high over the weekend, and I think yesterday’s zero was just wrong. 192 seems right.
I’ve been having terrible night sweats since yesterday – 4 times they needed to change my bedding last night after waking up sopping wet. I know I have some immune system fighting something! As a matter of fact, they took me off one of the anti-biotics but as of today, given the sweats, they put me back on the Vancomycin.
So I’m feeling encouraged today, but know that the ANC number can vary as I start to recover. So don’t expect a steady rise, necessarily; it’ll be an upward trend that we want to watch out for.
Don’t get too carried away – I’m not getting discharged from the hospital immediately, but soon-ish. We are watching my blood numbers for positive signs of recovery so that I can go home and get more rest – physical, spiritual and emotional.
Key indicators will be the return of my platelets which are progressing nicely on their own; stabilize the hemoglobin – which is coming along, but doesn’t show enough positive trend yet; I need ANCs to leave the hospital – that’s my immune system. Now, on Sunday, we got a count of 420 ANCs which was very encouraging, but then today it came back as 0. Inevitably, miscounts may happen, which is why we need to watch for trends. For the ANCs, over 500 and I’m no longer neutropenic; closer to 1,000 will give the hospital much more confidence to discharge me. Then there’s the white blood cells. They are starting to inch up but there’s no real trend yet.
This is going to take time – my doctor thinks that we’ll see things start to trend up this week so that hopefully next week there’ll be a point that I can return to my own apartment in Philadelphia and prepare for the next round of chemo.
I have seen a lot of family and friends over the past few days and have received many emails, voice mails, comments on the blog especially about the bone marrow transplant. Thank you everyone for getting the word out and for helping to save lives … I had little appreciation for what something like that truly meant until I was here; and when I get out, it will be my number one priority to continue to help other recover from this illness, whether through supporting bone marrow registry drives, visiting hospitals, or volunteering to help out through the American Cancer Society’s many support programs. (Did you know they have a free service called Road to Recovery? My dad’s friend, Gail, told me about this one. A volunteer will come and pick you up either at your house or when you’ve finished outpatient chemo and drive you home so that you don’t have to battle the side effects of chemo and get home? This is an incredible thing. And it’s meant for all cancer patients.)
More to come soon.
Strength and Love,
The last round of chemo knocked the leukemia down from 80% to 60% – a good improvement, but not what we were hoping for. Also, my brother, Alan, is not a compatible bone marrow donor.
The way forward is clear now:
- I will spend the next week to 10 days in hospital as some of my blood and physical strength recovers; specifically, we’re looking for my ANCs to get up to 500 (we were slightly encouraged today that my platelet count went up on its own as did my hemoglobin, but due to a processing error earlier this morning with my first bloods results in 6.6 for hemoglobin, I’m actually getting a transfusion today).
- When my numbers have sufficiently recovered, I will be able to return home! The length of the stay is still unknown right now and will depend on my numbers and the type and frequency of care I’ll need when I’m not in hospital.
- I return to the hospital for a month’s stay for a third round of chemo. This will involve the double dose of Ara-c.
- Then we have a break for a while – not sure how long, at least 4 weeks. I don’t know if I’ll be able to be at home for part of that.
- Then the bone marrow transplant. There are subsequent steps after that, but we can hold off on those details right now.
If you are interested in becoming a bone marrow donor — and who knows if we’ll be a match??? — please visit http://www.marrow.org. That is the national marrow donor program and has a wealth of information on what the program is and how typing and matching work. If you register online, they will send you a kit. You can also do it in person at a local donor center. Also, speak to your doctor about how to do this if you are otherwise unsure. To be blunt, I cannot survive without finding a donor so we need to get as many people registered as possible; my family are least likely matches, so I have to reach out more to friends, colleagues, clients, etc., and hope that somewhere out there there is a match for me.
The likelihood of me finding a match in the registry is 70-80% (the percentage is based on ethnicity).
I am finding all of this a lot to take in right now. While the road forward is now better known, we also now know better a number of the risks: outside of the hospital, it will be more difficult to control exposure to potential virii and other bacteria – I will have to be very careful. I still basically won’t have a life and the road to recovery is going to be much longer than we originally thought.
You know, when they told me the results of the 2nd bone marrow biopsy and it wasn’t good I was noticeably emotional with the doctor that night. Last night, my mom showed her emotions and she was crushed. But I have to tell you, that even though I still am of the belief that I didn’t come to Philadelphia to die, that I’m somewhat emotionally barren right now and not entirely moved by this news as I was the last time.
It’s very bizarre. I’m angry that I have leukemia. I’m angry that I’m just one big science experiment. I’m angry that I have to put my life on hold for a long time and don’t even know when I’ll get it back. I’m angry that I had to lose my father now of all times! But I think I’ve spent every other emotion of being sad and scared that all I have left is this lingering anger and animosity. That’s not good and I know I need to work on that.
Maybe I exaggerate a bit – I’m still sad. I’m rereading this entry and making edits and can’t help but be teary-eyed. The reality of the situation is just so extreme – you don’t expect or plan for something like this. You know – in the beginning, the attending physician used to say that I need to think of this as an episode of the The Outer Limits … where they control the horizontal, and they control the vertical. But I’m wondering who is the sadistic son of a bitch who’s writing the fucking script.
I did four laps around the floor today. G-d, how boring. But it started because I wanted more ice in my cup and as I passed the nursing station, one nurse told me I had a lot of mail. I couldn’t carry the cup, push the stick (I was getting an IV infusion of something this morning) and carry the mail so I told her I’d get her on the next lap.
So it was get ice, water, walk around the rest of the floor, drop off in my room, walk around again. Pick up the mail. Walk all the way around the floor and drop off at my place. So I figured I have to do 4 laps today in any case and I’m half way through it so I’ll just do the rest. It’s so boring. At least at the gym you can talk to someone, watch TV, listen to music (yeah yeah yeah – get an MP3 player, Seth — long story there and don’t anyone rush to get me one – I have several).
Whilst I was walking around the floor today, another “guest” on the floor was doing her laps and she was going in the opposite direction. It was weird that we kept bumping into each other twice per lap, and we were trying to figure out why each of us were comfortable walking in each of our directions. We couldn’t figure it out.
ENTs came by today to take a look at the growth in my lymph node. They tried to see if there was any puss they could push out of it (not an unpainful process) … to no avail. They said looks like it’s infected and inflamed but it’s not growing any more which is a good thing so we caught it early and we’re treating it with the right anti-biotics. It could take as long as 2 weeks for this thing to go away completely, but with my vanity, I’m going to hope for something much sooner.
Originally uploaded by sdpalmer.
For a week now, my good friend in Australia, Steve, has been asking me if “Russell” arrived. I had no idea what he was talking about and he was keeping it awfully cryptic. Well – Russell arrived today – a plush Rhino that’s been on Steve’s bed for many years. It’s big and cuddly (Steve too) and I’m enjoying having Russell here.
I’d like to make this an exchange program so it’s time for my teddy which has been on my bed for nearly 20 years to take a trip to stay with Steve. I am just overwhelmed and happy with such a thoughtful thing to have sent. It’s brought me a lot of happiness today and I am forever indebted to Steve as one of my best friends, closest confidants, and loves. I’m pretty sure having Russell here is going to start to change things a lot.
Thank you, Steve!
Woohoo! Results of the CAT scan are back. I have an inflammation/infection that we are going to continue to treat with a specialized anti-biotic and monitor progress. There is nothing to drain since the inflammation is in the muscle itself.
Did the bone marrow biopsy today. That went really well – got good samples today. Results should be back mid week so we can figure out next treatment steps.
I also learned today that there is no chromosomal damage! We’ve been waiting to hear this for a while. There are some chromosome effects that impede treatment. There are others that help it. Mine are not effected so my body’s natural youth and strength will have to take this on. Overall this is good news.
I did my physical therapy today – 2 laps around the floor. My new (personal) laptop has arrived and mom won’t hand it over to me until I do my exercises tomorrow. That sounds at least fair. At least worse than most physical therapists, but I’ll do it.
It’s late and I need to get to sleep but I wanted to publish the health update.
Strength and love,
So this thing growing in my lymph node under my jaw may be the mumps! It got worse overnight – I spiked a fever at 103.3 but a little Tylenol helped to bring that down. The growth is bigger this morning and is causing some annoying pain – will have to ask for Oxy later. So the doctors seem to feel it could be one of two things: 1) it could the mumps! in which case they give me sucking candies and wait for the thing to burst and drain on its own. or 2) it’s some other infection. If that’s the case, we’ll have to figure out whether draining or removing it is the right course. But we’re not going to know that until we get some pictures so I’m going for a CAT scan this morning.
Later today, we’re doing the bone marrow biopsy and I’m being put on a strict exercise regiment because my leg muscles are a little weak (mostly because I haven’t been out of bed much in the past couple of weeks.) I told the doctor to make sure she tells my mom — she’ll be more insistent than any physical therapist.
I just think it would be very funny if this turns out to be the mumps. After all I’ve been through, the last thing I would have thought I would have caught in a hospital would be mumps. At least it’s not a cancer malignancy.
I’m terribly behind in responding to emails, text messages and comments left at the blog. My energy level varies during the day and I try but I’m not always able to get back to everyone. It’s nothing personal.
Strength and Love,
I think some of the full force of the emotions around losing my dad finally hit yesterday. I was terribly depressed and sad and crying in the morning. The enormity of it was finally hitting me – not just the loss, but it’s the loss goes on when there are estate matters that need to be settled which aren’t going to be quick to resolve, which means constantly having to deal with the loss.
Then, I had some health complications yesterday. I’ve developed a lump in my lymph node. We’re not sure exactly what this is from, but I have been spiking fevers and there is some pain associated with this growth. The doctors aren’t quite sure what this is from just yet. There could be many causes and we’re monitoring it to determine next steps.
Then, there are some environmental issues. It is 80 degrees F in my room this morning! That’s just totally unreasonable. I just turned the thermostat all the way down – no wonder I’m feverish and sweating. So on top of wacky environmental controls, some brilliant person called last night at 10pm and let the phone ring 15 or 20 times. Let me assure you, that at 10pm at night, I am worthless with the amount of drugs I need to take, and given the pain and fevers from last night, that ringing was more annoying than anything else and I just couldn’t get the phone let alone talk on it. So we’re going to have some new phone rules:
1) Don’t call me after 9pm – I’m taking drugs by then to put me to sleep and I’m physically too tired to have a conversation.
2) If you call the hospital room line and I don’t answer after 4 or 5 rings, hang up – I’m not going to answer.
3) If it’s urgent, call my cell phone and leave a brief message. And speaking of cell phones – since everyone’s using that to call and leave messages, please limit the length of your message; I already have great intolerance for long, rambling messages – please keep it to 10 or 15 seconds at most (Hi, it’s XXX — give me a call back — that suffices.)
I know I’m in a bit of a cranky mood today, but I’m terribly uncomfortable and just need a little respect on the phone side of things so I don’t look at it as a curse but as a blessing to keep in touch.
Thanks, strength and love,
It’s funny – even though I’m off the chemo and feeling much stronger, there are times when I just get wiped. There was something important I really wanted to write about but my brain is just a little too “wet” tonight to write it, whatever it was … the thought has completely slipped by.
Got platelets today. No worries about the frequency – I was concerned at first that I got them at the beginning of the week and needed them again at the end. These are the last to recover and the chemo is still working in my body so it’s not surprising or alarming.
My numbers are trending so that I’ll probably need blood tomorrow but I’m hoping that maybe the chemo is being so effective that the body will start to counter act that. That’s me trying to be positive. But generally, the trend in the numbers don’t show enough of an effective up-tick in the numbers for me to really be certain that I won’t need blood at some point this weekend.
It’s interesting also that I can feel when I need blood. Platelets, I can’t feel when I need; I just need to look at the numbers. But blood – that I can feel. And I’m starting to ‘feel’ that.
OK – so many people have asked what numbers are we actually looking for on the blood chart. I’ve been struggling with discussing this. Mostly because the target numbers we’re looking we’re not reaching and I don’t want people to freak out about this and think that I’m getting worse instead of better. I am documenting the numbers but really won’t discuss the thresholds we’re aiming for, but I will definitely let you know when the numbers start to trend in the positive way that we’re looking for. Right now, though, it’s still too early to expect the trend we want to see. This will take several months for my body to recover, but there is a road to recovery that is understood even if the specific next steps aren’t yet known. There are so many what-if scenarios, that to go through them all is just not practical, but I do understand them and truly believe in my doctors’ abilities for healing and treatment.
So I’m looking forward to getting out of here. Don’t know when that will be, but actually participated in a work conference call today and felt like I was able to do some work which was really important to me. The head of the Oncology division came by to visit today and she told me the more I can schedule to things like that – even if it is just 15-20 minutes a day right now – that’ll it will be good for my body too to turn from the general malaise that comes from physical exhaustion and mental retardation (don’t misunderstand me – I’m not brain damaged, but the chemo has effected, and continues to effect, certain coginitive abilities in terms of duration, but this recovers too — it’s just a little pronounced now.) Interestingly enough, I can still play gin and Scrabble with my mom from time to time and am still able to win (at Scrabble) and play competitively in gin (read, lose).
Soooo … this entry is a little longer than I thought it would be. That’s a good thing. Hope everyone is well and my deepest appreciation for all of your support.
Strength and love,
I know it’s been a while since I wrote last. It’s been a very difficult week. I cannot begin to explain what it’s been like getting through my father’s passing while still on chemo. It took every ounce of strength I had and I was so weak at the end of the last round. I had no ability to manage any of the details, no capacity to really talk to anyone but my mom, my brother, my sister-in-law and my uncle. And just my physical energy was so sapped by the jumble of emotions, I all but slept through the past few days.
But on Monday, I came off of the second round of chemo. Instantly, my strength was back. Night and day. Not all of my strength – both mentally and physically – but substantially so. It was amazing. Almost like switching on a light bulb. And then the enormity of my dad’s passing hit hard. We organized a gathering for the hospital on Wednesday. It was small and private with my friends giving me an opportunity to best observe shivah as I could, while also observing certain rituals.
I was out of bed yesterday for several hours – first time that had happened in weeks. Probably too much time out of bed because today I’m exhausted. I feel feint like I need blood. But hydration and eating sugars are helping but I’m still a little on the weak side. I can’t even make a lap down the floor today. But getting up from my bed to the chair I’ve done a couple of times and I think I just need to do things slowly. So I’m going to rest today, get back my strength, and restart doing laps around the ward tomorrow.
Enough of an update for now. Will write more tomorrow – I promise – so I can get back in to the routine.
Thank you for everyone’s emails and comments and DVDs and books and magazines. It’s making pass the time much more enjoyable.
Strength and love …
[NOTE: Please do not send condolence cards to the hospital - please only send get better cards to the hospital. All other correspondence can be sent to my home. If you need addresses, please let me know by email.]
My father was fortunate enough to have made it down to Philadelphia to see me last Friday before being admitted to the hospital on Saturday. My father was fortunate enough to have seen my brother yesterday just after Alan flew in from Israel. And I was fortunate enough to talk to my dad yesterday once he was out of critical care.
This morning, my father passed away. At least he held on for us all to see and speak with him. I am a little numb right now. A little unsure how I should feel. I am aware of the irony that my best friend’s father’s yarzheit was yesterday on the Jewish calendar and that my father’s will be so close. I am keenly aware of the other side of the who shall live and who shall die liturgy for Yom Kippur.
And I am ever grateful for the phone calls and emails and I’m sure all of the other media that will start flowing this way. I am a little overwhelmed. I cannot attend the funeral – the risks to my health are too great. But I will be present there somehow and will discuss with my brother and uncle how best to do that.
I can’t think of anything else to write right now except that I think you all for your love and support and understanding while I don’t respond or write as quickly or as often as I have or typically do.
Love and strength,
My hair is falling out, my counts are low and I’m getting a little more sluggish. I’ve been in touch with some long-lost friends and distant family and it’s all been helping. For the first time, the weather outside (frigid today here in PHL) seems to have seeped into my room a little and I can feel a little bit of a chill — or maybe it’s the lack of my hair.
So my brother is in town and I can’t wait to see him. He’s going to get typed and cross-matched as a possible bone marrow donor (but that’s still several steps away).
Allison, the dog sitter, told me Voodoo is sneaking onto furniture during the day and we have to do something about it. At first, Allison wanted the crate, but given Voodoo’s age and the trauma of this switch right now, I didn’t think that was a good idea. I suggested we put a sheet on the furniture for now, and I just saw a training blanket that let’s out a high pitch squeal should a pet venture onto it. So I think I’ll pick up a couple of those for Allison and send them over. Boy do I miss Voodoo though! I wish there was a cancer ward that could accept dogs on-site.
I know I need to plan for a home office for the near future. But I’m giving up on measured drawings. I was going nuts trying to lay things out by the inch or centimeter, but in the end, I know roughly what will fit where and just need to get a desk and some office supplies and bring the whole thing together when I get out of here. I just can’t do that level of planning now, and I certainly don’t think anyone can do it sitting, sick, in a hospital bed.
On the bright side, I got a letter from my insurance company that I’m being covered so far for my stay which is an enormous weight off of my shoulders. I never really needed insurance before, and boy, now I am very grateful.
I bought tickets for my mom and her sister to hear Gil Shaham play with the Philadelphia Orchestra at the Kimmel Center last night. My family has been so good to me and I wanted to express my thanks.
Amazing how in-tune with my body I’ve become. I woke up this morning feeling relatively good but then as the morning drew on I knew I needed some red blood today. And of course it’s coming. Like usual, I feel a little feint and not much like doing anything. I hope it comes before I get too irascible. (It usually doesn’t. ) But afterwards, I always feel better. And at least it’s not like platelets where I run the chance of the allergic reaction. So even as I’m writing this the blood is here – they just brought in a machine to take my blood pressure and stuff and monitor me during the transfusion so it’s time to go.
It was one of those amazingly quiet days yesterday. I think despite the move in the middle of the night, I was just having one of those exhausting days and I slept through most of the day. Late afternoon, finally woke up, had dinner, saw friends and spent time watching a few West Wing episodes. (Thanks, Mike)
Late last night, they had a transfer patient: 19 year old recently diagnosed with leukemia. I felt so badly. I volunteered to talk to him if he was up to it. Let’s see what happens.
Today, I’m feeling like I’m going to need either blood or platelets. Don’t know why – just intuition. Numbers aren’t in yet.
Finally saying thanks to mom and aunt BJ for being here nearly constantly and sending them to the Kimmel Center tonight to hear Gil Shaham and the Philadelphia Orchestra. That should be fun – wish I could go!
Breakfast is here. Let’s see what gloriousness is here today.
Talk again soon.
Strength and love …
At 1am this morning, the nurse came to me and said that they had to change my room. The room I was in had a special feature called negative air flow which is sometimes needed for certain patients – not for me. Well – it was a nice run – almost a month in this nice big room. I moved just next door and it’s much smaller but without a special feature that future patients will need so I don’t think I’ll be moving. New address and phone are as follows beginning immediately:
Rhoads 7, Room 7006
rest of the address as always; only the last digit of the telephone number has changed – the last four are now 8117
If you need me to send you the full contact details at the hospital, please post a comment on the blog and I will email you the details directly – I hope everyone understands why I won’t post the full information here.
If you sent something to me prior to the move over the past few days, the staff here will re-direct all packages – no worries there. Just keep this on hand for future use.
What a pain. Not exactly what I wanted to be doing at 2am, but the staff was really good. 5-6 nurses helping me take everything off the walls, move my stuff – it went relatively quickly but I’m eager to get back to sleep and the adavan is trying to drip in but is having some problems. Hopefully back off to la-la-land soon.
Last night we started the 2nd round of chemo – that’s considered day 1 or 7; today was day 2 – I just got injected with the Daunarubicin. Cumulatively, this is day 21 on the chemo regiment and that’s how the blood chart reads. To minimize confusion, I will use that number. It’s day 24 in the hospital. < sigh >
Last night was the first time while on chemo that I actually felt nauseous, even having taken the anti-nausea drugs. So I rang for the nurse, explained the situation and they gave me some adavan and I was fine. That was the first direct drug-related discomfort. Hey – I really can’t complain … too much.
Overall today was a good day. Blood counts were good. I had good times and felt very up and made a few laps around the floor. I’m tired now, but it’s 10pm and that’s to be expected. I’m going to take the resterall and fall asleep watch a new DVD sent from my list. (Remember – you don’t have to buy off the list, if you think of something else, great. If you have something you want to lend or send, cool – go right ahead – this is just a guideline.)
Thanks for everyone’s well wishes, cards and pictures.
Strength and love …
Ever since this whole episode of my life started, my mind has zoomed in the Yom Kippur prayer that asks, in the new year, “Who shall live, and who shall die”, and then goes on to list all the various ways a person may die. The prayer concludes each section that prayer, attrition, and acts of loving kindness nullify the decree. I have always believed this quite literally. I grew up reciting it, singing it and truly believing that my fate was written to live or die and that how well I live and what I experience through the new year is guided by the depth of my conviction to repent my sins of the year before, to resolve to do better and to actually stick to that plan – that secret agreement with G-d. I have never thought of it as an onerous or outmoded way of thinking though many would say that it is. I believe and I simply don’t have to prove or demonstrate anything beyond that, because, as Douglas Adams (and I can’t believe I would actually bring one of the world’s best science fiction writers who had no bones with religion into this argument, but he wrote something so cogently that I can’t help but use it here) wrote, “proof denies faith and without faith [G-d] is nothing” (of course man gets run over in the next Zebra crossing, but that’s besides the point.).
My point here is that I have focussed on the death side of the Jewish equation. I was convinced I was on the list of who shall die. And while the love and will of my family wouldn’t let that happen (G-d forbid), I still had this moribund obsession with this. Then a few things happened that changed my mind.
First, after the bone marrow biopsy tests came back and were told the bad news that my marrow only went from 95% to 80% leukemic and that we were hoping for 5%, we started discussing treatment options and I requested an opportunity to seek a second opinion from outside of HUP (Hospital of University of Pennsylvania – this is where I’m being treated but it’s commonly referred to as HUP). The doctors agreed and we tried contacting three well known/qualified oncologists back in NYC. In general, I can sum up their comments like this: given my type of leukemia, I am in the best place possible to seek any opinion, and that generally, none of those other doctors were willing or qualified even though some are quite well known and respected in the medical community.
Second, I came to realize that though in my mind I knew I needed to move to Philadelphia for work, my heart was never really into it. But I had the good fortune (fate?) of meeting some wonderful people and getting acquainted to some neighborhoods and neighborhood institutions (i.e., food places of interest ) that started making me feel like Philadelphia’s still not my first choice, and I’ll probably run up to NYC quite a bit, but it could be livable.
Overall, the revelation is this: I have this life-threatening disease and I have to believe that there was more than a little divine intervention to get me to Philadelphia and to these doctors who are probably the best qualified in the world to treat me. I am on a floor with 28 other patients. At times, between doctors, fellows, residents, interns, nurses, CNAs and other staff, the patients are the minority on the floor. We get excellent care that we most likely wouldn’t get anywhere else.
So now I am convinced that I am on Who shall live side of the equation. Look – this diagnosis of where I’m at with my leukemia levels ain’t great. A second round of chemo is not uncommon but it is also what we were hoping to avoid. To be frank, if it doesn’t go into remission after this round there are still options open but they all carry very high risks and mortality rates. But after crying to my oncologist yesterday that “I didn’t come to Philadelphia to die” she assured me that whatever it takes, however long it takes, that I will get through this. It won’t be easy, but I will live through it and go on with my life.
I think I’m so anxious to get on with my life that I want to see that light at that end of the proverbial tunnel a little closer and I don’t want it to be a year out which is an outside likely chance. But if it takes a year to save my life, then I’ll take the time.
So my first round of chemo didn’t get the results we were hoping for and I need to have a second round of chemo to try to bring my counts down even lower. Until we get the results of this second round of chemo, we won’t know if I’ll need a bone marrow transplant, and the doctors are only planning two weeks out right now. However, in anticipation of that transplant need, they have already started typing me. At this point, no one needs to do anything along those lines. We still have to get through the next round of chemo, which will last 7 days, and then another 7 days of rest at which time they’ll do the bone marrow biopsy to determine how effective the treatment was.
This is going to prolong my stay here in the hospital a little more than I had hoped. And when we first got the news of the results of the first round of chemo, I was crushed. But I’ve taken the past few days to get myself together and get ready. I’ve tried reaching out to other oncologists in NYC to seek some objectivity and a 2nd opinion (not that I don’t trust my own doctors here, but I don’t know what I don’t know so I don’t know all the questions I need and want to ask and I’m overwhelmed with anger and frustration). Overall, most doctors have to specialize in this kind of leukemia before they give an opinion, and from what we heard, I am in the best possible place for that and there really isn’t anyone else I could seek out outside of this place that would know more or better how to treat this. And that has greatly reassured me.
I have my up and down moments. In the morning, I’m up, awake, vivid and can accomplish quite a bit. From about 6 until 9, I’m great. At 9, I start to wind down a little and I coast through most of the day. By 2 or 3, I need to rest. Dinner time, I’m good, I eat, I’m able to do some stuff, but it really has to be mindless. But by 9pm, I’m done. And it’s usually at this point that I feel saddest or most depressed or most anxious or most worried. At 10, I take the sleeping pills and that lulls me to sleep and the cycle starts again. I think it’s important that I realize this cycle and share it because now you’ll know the best time(s) to try to catch me by phone or online.
Today my hemoglobin is low so I’m getting a transfusion. I’m already feeling the effects of the low blood this morning – it’s a dizzying kind of effect on the whole body. Makes my head swirl a bit. Unlike getting platelets, though, I won’t need Benedryl to knock me out for the transfusion. So I’m just waiting on the blood and will need to stop writing soon because I feel other effects coming on now also – spots in my eyes, irascibility (or is that just part of my normal personality? )
So that’s all for today’s update and the update on next steps. I’m enjoying reading everyone’s comments on the blog and getting emails and the pictures and cards and notes and postcards. Please keep ‘em coming, it’s what really gives me my strength. And if you’re itching to send something more to help me pass the time – magazines are good – travel, gadgets, technology … I wish I could get through the Atlantic Monthly or Harpers but my concentration just isn’t there. Also, I posted an entry right before this one with a link to a list of DVDs that I would like to have.
Love and strength to you all, and many many thanks.