Still on the Roller Coaster

After the first few big dips, we finally seem to be crawling up the other side of the roller coaster.  Unfortunately we cannot see around the next bend.  Seth is comfortable after having his breathing tube removed and is breathing easier than when it was in.  There are still other complications that are being actively addressed.  Seth was awake for a good period of time today and was able to recognize family and respond to voices and faces. He become very agitated when his MAC was threatened by his brother’s PC.  It was great to see that interaction.  Brothers will be brothers.  I can only imagine what the two of them will be up to in the coming days.

Filled with hope and prayers

Mom 

Roller Coaster

Since Seth’s surgery on June 14, he has been riding a roller coaster.  There were several good days but as the surgeons told us, the chance for infection could be a strong possibility after about a week.  It seems that possibility has become a reality and Seth is fighting a stubborn infection.  This has brought him to the Medical ICU for the best possible care and diagnosis of the problem.  It is frustrating not to have all the answers as to the cause but we are confident that this will be resolved.  He is getting all the best treatment and attention not only from an outstanding medical team but also from his brother, sister in law and the rest of the immediate family.  We look forward to having him respond himself via email, blackberry and blog just as soon as he is able.

Your prayers and love mean so much to all of us.

Mom

Day 6 Following Surgery

I know the title is getting a bit stale but it is the easiest way for me to try to keep track.  Seth is settling in to his room and beginning to feel more comfortable in his surroundings. The staff at the hospital have been amazing.  They are really special.  Seth is still feeling the after affects of the anesthesia and pain meds that he needed but each day he is making good progress.

As you know, your prayers and good wishes truly make the difference.  We appreciate all your good thoughts.

Mom

Day 5-Following Surgery

It is so nice to be able to share some good news with you.  Seth was moved out of ICU tonight to a regular room.  He was exhausted from the move but very happy to be taking the next step in his recovery.  Details to follow.

As always, your continued prayers and best wishes are the best medicine!

Mom

Day 4 Following Surgery

Seth is showing more and more strength each day.  Another tube was removed this morning.  He was out of bed and sitting in the chair before we even got there.   He was rather pleased with that!  It is good to see the progress Seth is making, but frustrating because we want it to go quickly; it is his body that is dictating the pace.

Your messages are bringing all of us added strength and encouragement.

Mom

Day 3 Following Surgery

Seth is still in ICU but is showing good signs of physical improvement.  Some tubes were removed today and they even got him to sit up in the chair for a short period of time. Post-surgery in ICU tends to be a very confusing time as day and night have no meaning, meds are bountiful and interruptions of all the staff continuous.  The doctors reassured us that once in a regular room this will quickly dissapate.

Thank you for your prayers, thoughts and kind words.  They are so helpful to all.

Mom

Day 2 Following surgery

The day started off quite well.  He insisted on having in Blackberry brought to him.  (Of course you know that happened). Seth was far more alert and asking lots of questions.  The surgeons came in to check on their work and were pleased with Seth’s progress.  He literally was at them with lots of questions and they were so honest and forthright with their responses.  I think it really made Seth feel so much better to be part of the discussion. All of his blood work was being very carefully monitored and it was discovered that there was a bacteria infection that needed to be checked out.  The strain of bacteria was resistant to the antibiotics that he was on.  There was  concern that the Hickman line was problematic and after careful consultation with surgery, oncology and infectious diseases the decision was made to remove the line to make sure that no infection remained in his system.  The Hickman will be reinstalled as needed to help him along the road to recovery.  This was done late tonight and he was fine.  I saw him and he said to please go home with Aunt BJ and Uncle Lenny and get some sleep and oh yes, please bring my computer tomorrow.

Please continue the love and prayers and they are an inspiration to all

Mom

Following Surgery

Just to let you know that Seth came through the surgery very well, all things considered.  He is in ICU, sedated and resting comfortably. He should be in ICU for another day or two.  They removed  the respirator  this morning.  His doctors said they are very encouraged, but were very clear that there is a long, tough road ahead for him.  With continue prayers filled with strength and love….

More tomorrow.

Mom

Not a good day at all

Today Seth had a CAT scan of his abdominal area to find out what was causing all the problems and they found it.  They really did.  As I write this he is in emergency surgery to repair some type of damage in the intestines.  The doctors are not exactly sure what they are going to find.  It could be a variety of different issues.  All of this is most upsetting.  His oncologist agreed that the best thing to do was the surgery as the benefits outweighed the risks. Doing nothing would be a disaster.  As you know he is not a good candidate for any surgery with his counts so low but they are giving him platets and will do everything possible.  I ask for your prayers tonight and know that the power we all put in them will give Seth strength to beat this.

I wil post an update tomorrow

Mom

Post Chemo

Seth has completed latest round of chemo.  That was easy.  The post chemo complications are what is really hard.  He is on so many meds that are needed to counter the side affects that he and I find it overwhelming.  Everyone keeps reassuring us that this will get better but going through it is terrible.  I know that as soon as Seth is able to he will be on the blog himself.  That will be great! We all need to keep the faith.

Mom

Confirmation…Seth is full of..

sh…

This has not been the best of days for Seth but he is about to get the 11th of the 12 doses of chemo.  One more tomorrow morning and this round of chemo will be done.  I am sure that Seth will have a few thoughts to add to the blog very soon but for now lots of love and strength.

Mom

Treatment update

We are now in day 5 of treatment. 6 bags of high doses of Ara-C. At first, it wasn’t so bad, it seemed pretty normal. Then Saturday afternoon it just hit me hard: fatigue. Been sleeping a lot. Also been depressed about the lack of internet and phone connectivity in my room, but thankfully the Internet part is solved. Still, though, a lot of fatigue from the chemotherapy. However, I’m hoping it’s working. A lot of the nurses here are of the opinion that if anything is going to bring down the levels of Leukemia in my bones, it’s this course of treatment.

Made some new nursing friends on the floor, altough I think I was secretly harboring not to inorder to return to the comfort of those I know and came to love on Rhoads 7, but there are a few here on 6 that I’ve absolutely come to really adore already. I also met my first patient here! A guy and his fiance – in their mid-20′s. He has lymphoma which has been successfully treated and he’s supposed to be discharged today. I’m wishing him well while I’m also jealous as all get-up.

So … after investing a few hundred dollars in a Sling box so I can be cheap in the hospital and not pay $8 / day to watch their lousy TV, I watched the conclusion of the Sopranos last night and was sadly disappointed. Maybe my investment wasn’t worth it after all But there’s always the Food Network all day now

Will write more when I can – it’s basically a very uneventful stay. A little nauseau but no vomiting, a lot of fatigue but nothing dramatic. I’m walking around the hall trying to keep my exercise up, but not really my stamina. Mom’s here doing needlepoint and I’m often dreaming of moving to Paris when this is all over.

Strength and love …

The Only Thing Worse Than School Administration is Hospital Administration – or – The Drama of the Return … an epic tale in 11 1/2 parts

( For those who know, this is where we insert the < drama > slide into the presentation … )

Part The First: Remember last week when I needed to do a bone marrow biopsy in order to determine how much leukemia was left in my bones? We needed to do this in order to determine if I needed another round of chemotherapy before the bone marrow transplant. After the last BMB in the hospital 14 days after my 2nd round of induction chemo, we were at 70%. Doing a transplant with that much chemo still in the bones isn’t a good thing so we decided to test the waters (as it were) to see where we’re at today.

Process was the same at the outpatient clinic as it was in hospital. Atavan, numbing, stick, pull, scrape, done. Bandage and sit on your butt. No biggie. Of course when my oncologist told me that we needed to this procedure, she called on a Thursday and told me I could do it on Friday (the next day) or Monday. Always wanting to attack this thing and not wait, I opted for Friday. Of course doing it on Friday gave me absolutely no time advantage whatsoever and adding a few days of waiting in angst was not thought out very well.

Part the Second: Regardless of when the bone marrow sample was taken, when I went to see the oncologist on Wednesday, we learned that despite the fact that pathology had the sample for several days nothing was done with it! Nothing! So the evaluation had to be rushed. However, I was still scheduled for hospital admission on Thursday. We discussed threshholds again – if the BMB results showed around 30%, I wouldn’t need to go back in. Of course we were going to have to quibble if the results were 35%

Partial path off of the Second part: Had a great time spending time with my cousin, James, this afternoon. Despite our constantly ringing, vibrating, beeping, hounding phones, it was just the two of us, food, and only one call from James’ brother (and another cousin), Kevin! What a treat!!!!

Part the Third: Around 4:30 in the afternoon the same day I saw the oncologist, I got a call from the hospital’s admissions office. They told me that I should be at the hospital at 9am. They asked if I could be there at that time and I told them I wans’t sure since we were waiting on final test results to confirm. Admissions didn’t seem to care – they just run a script that says this person is scheduled for admissions, they need to arrive at a certain time and any deviation from the script just isn’t allowed.

Part the Third through the Fifth: Hours go by after the call from admissions and I still haven’t heard from the oncologist with the pathology report. Five thirty, six, six-thirty I page the doctor. Nothing. Finally, around 7:30, the oncologist called: 50%. OK – 50% is much better than the 70% we thought was still in my bones after the last biopsy, but it’s still high enough above the threshhold to send me back to the hospital for another round of induction chemo.

This round is using a different cocktail mixture: this time it’s double Ara-C. On the down side, there are physical, motor control and some cognitive side effects that are more pronounced than with the last round. So on top of the Zofran and another medication that I’m taking to prevent nausea, I’m also taking steroids for my eyes. Drops. I hate eye drops. But more on that later.

Part the Sixth: Hospital admissions called around 9pm on Wednesday to say that my previously reserved bed for 9am the next day was no longer available and that I would have to wait at home until they called me with a bed / availability. Can I blame them? I’m just not a procrastinator when it comes to treating my illness and the sense, once again, over the loss of control over time, timing and what-have-you is just so profound.

Part the Seventh: Thursday. Waiting. Having gone through an extended stay at the hospital once before, I pretty much knew what to expect and the items I wanted from home. So I spent a good part of Thursday packing – not much – but there are all of the pictures, keepsakes and stuffed animals (yes, Russell is with me) that you want to take. Did a few chores to close out some open stuff for my dad’s estate, paid some bills, and just idled.

Part the Eighth: Not bearing the idletime very well, I go out for a walk. It was a gorgeous day in Philadelphia. There’s a beautiful new apartment building right on the Skuykill River not too far from where I live right now. Living in a loft setting when you need regular care isn’t easy and I’ve been thinking about moving and finding a more traditional kind of set up. I saw some really beautiful places and maybe the timing will work out just right. Just as we’re finishing viewing the second to last unit for the day, I got the call from the hospital, “Your room is ready when will you be able to come in?” I told them in about an hour.

Part the Ninth: Sure enough, an hour later, we’re at the hospital admissions room, where there are about a dozen people, about 4 checking in, the rest relatives/friends, one person at the reception desk and one person doing admissions. Can we say molasses? ‘Nuff said? NO — of course not …

Part the Tenth: turns out my room isn’t ready after all! In fact, the room we thought I was getting on Rhoads 7 was not the right kind of room for me, so they were scrambling to find me another room in the hospital. They had one on 6 which isn’t bad, but I knew the nurses on 7 (and I will talk about this in a future post), but there was just something that seemed off about putting me in a room on 6.

Parth the Eleventh: The room on six is ready. It’s just before 9pm They weren’t going to get started on my treatment because the chemo pharmacist leaves at 9. I was IRATE! I told them to find the doctor on duty and that I wanted to be discharged. If was going to have to wait 12 hours to be treated, I wanted to be medivac’d to NYC and get treated at Memorial Sloane Kettering. My mom, of course, was irate, but I was dead serious. It made absolutely no fucking sense at all to make me wait to come to the hospital all day just to sleep there for a night when I could have done the same thing at lesser risk of infection by being at home.

It took a lot of hemming and hawing, but the chemo chemist stayed late, mixed my cocktail and around 1am this morning, I started treatement. Technically, it’s day 2. And here we go.

Hopefully the < drama > slide ends here. But because I have an interior room in the building, I have no cell service, except a scant one bar from time to time, if I’m sitting in the right way, with my body curled around the phone, arm extended toward the window, the window shades open, the sun above a certain azimuthal height, etc. …

To make things even worse (could they be, Seth … could they be?) the wireless internet access is down on this floor. I’ve been typing this entry most of the day on Friday and came to the family room which is on the other side of the floor, hoping that the wireless acess would be up and running here – but it’s not. So I stole the ethernet cable from the computer in the family room and am using that now.

It’s so frustrating feeling this sense of total loss of control over time and communication. Time I can’t help, but communication … there’s just no excuse any more.

Truly, that’s all for now. If you want to get a play by play of my, when I can I can send short text messages to Twitter where you can follow me along at http://www.twitter.com/sdpalmer. I will try to integrate a twitter widget here. These are just brief messages about what I’m thinking or doing. It’s a very vicarious way to broadcast and follow one’s life.

Strength and love …

Getting the room

Well,Seth is finally in a room.  As nothing ever goes easy this did not either.  And the orders for the meds were not OK’d.  Not the 7th floor, no cell service, and to boot internet was down.  So you can imagine just how this all sat with us.  The good news is that the meds were corrected and chemo was started.  As soon as Seth has internet service he will fill you in with one of his more memorable disertations.
And so the next step has started. Love and faith will be the watchwords for tonight.

Mom

Waiting for the room

Well as things go, hurry up and wait is the norm.  Being a personal assistant, I am here to do what is needed and wouldn’t you know it, Seth found something that he needs, so he is sending me on a “shopping mission”.  I am so glad that for a first task,  it is a task that I excell in..Off to the store.  Selfishly, it is a good thing as I just hate waiting and it is a far better thing for me to be out for a bit, rather than add my angst to Seth’s.

More later.

Mom

50% solution

Visiting the oncologist today was unlike any other visit: it was actually not just busy, but crowded! And it seemed like quite a social gathering. After a couple of false starts to get my bloods drawn and get in to the the doctor (with my chart missing, nonetheless), we finally heard that the bone marrow biopsy done last Friday looked like it hadn’t been analyzed yet. < shock! > < horror! > We were going to have to wait for an analysis to come back this afternoon from pathology.

The wait was almost agonizing had it not been for a great visit with my cousin, James.

Finally around 7:30pm tonight, we heard that the bone marrow biopsy was showing 50% blasts in the marrow. On the one hand this was an improvement over the 70% we thought we saw after the last round of chemo, but it still was not near the 30% threshold that we set that would keep me out of the hospital for another round of chemo. So, I am going back for another round of chemo before the transplant.

We need to reduce the amount of chemo in my bones – this will help the transplant process.
This round of chemo will be unlike the previous two induction rounds: this will be a double dose of Ara-C, for one hour, every twelve hours, over the course of 6 days. I hear this is a significantly strongly dosage of chemtherapy and it will hopefully work more effectively. The side effects can be severe: everything from fine motor coordination to short-term memory loss is expected and I will be tested every 4 hours for side-effects and administered appropriate treatment or we will cease chemotherapy treatments until some capabilities are restored. This may prolong the actual treatment cycle, but I’m hoping that my body will be strong enough to weather the storm. I did hear that I will most likely receive steroids for my eyes during this round of treatment as a preventative measure.

Funny part is to this whole scenario that last Friday we planned my return to hospital and the doctor even made a reservation for me to return this coming Thursday. Admissions called today and asked me to be at the hospital by 9am and they will give me a temporary bed and then later move me to my permanent room. I am not about that at all: when I go back to the hospital, I want to be put into my room, change my clothes, don the gown, put on my iPod and let them start the chemo right away – no waiting around bullshit for hospital administrators to get their collective acts together.

Then this evening, after I spoke with my oncologist, admissions called back to say they won’t have a bed for me at 9am and I should be in standby mode: they will call me when they’re ready for me. I can already tell this is going to be a horror to go through.

In the mean time, I have my iPod synching, my clothes a-packing, my pictures, computer, etc., ready to go so I could just leave when I’m told to come to hospital, but I am dead-set (uh … bad use of words) on getting right to treatment and I will be noticeably and vocally annoyed if that doesn’t happen.

Also, I’m trying to get back onto the same floor that I was on the last time. I already know and love the nurses there and really want to be under their care and treatment again. (Uh, hello, Kathy … where you been?)

So aside from some anxiety-driven sleeplessness (even with some serious sleeping drugs), I do feel a bit more leukemia fatigued than usual and the lack of sleep is starting to catch up to me. (Be forewarned, HUP, interruptions every 18 minutes will not be tolerated as nicely this time around.) Hence, I am eager to start treatment and get back to “normal” as soon as I can.

It was a bit of tear-jerker to leave the office on Tuesday. There were some people who didn’t know I was fighting Leukemia who were visibly shaken and concerned – and I very much appreciate their concern, and as this is probably the first posting they’re reading since they found out, I want to say thank you and don’t worry about not knowing what to say — there’s very little you can say that’s wrong, and a whole lot that’s right.

So, once again, strength and love, and be talking to you soon from the hospital!

Love,
Seth

Seth’s Personal Assistant

Some things never change. I wanted a temporary, part time job that was challenging, exciting and creative. Leave it to Seth to make sure that this position meets all the requirements. However the pay is not what I think I am worth!

So when the tone of the blog changes and the phrasing is not quite what you expect, attribute that to his new assistant.

Mom

Bone Marrow Biopsy no. 4

Friday I had my fourth bone marrow biopsy. We were testing to find out how much leukemia is still in my bones. Above a certain threshhold, and I’ll need to go back for another round of chemo before the transplant. This will improve my chances with the transplant. Of course, such a circumstance may also set back the date of the transplant. Now as I am often reminded by my friend/survivor, Gail, timing really sucks with cancer and you are nearly helpless to do anything about it. And this, in particular, could really suck – on several levels: 1) the next round of chemo is stronger than what I’ve received before, and 2) I just want the transplant so I work towards recovery and not put it off anymore.

So this weekend, while a lot fun seeing Voodoo, was particularly stressful. I chose to have the procedure on Friday because when presented with the option of Friday or Monday, I decided on Friday so I can just get started – no reason to put off the inevitable. But it was a whole two additional days of angst waiting for the results, which probably won’t come back until Tuesday or Wednesday.

Last time, the biopsy showed close to 70% leukemia in my bones. We have to get that number down. If there’s anything over 30%, it’s back for another round. And I’m tentatively scheduled to enter the hospital Thursday. And being the type-A personality that I am, I’m going to draw bloods Thursday morning at the oncologist’s clinic so we can do the blood cross-typing and matching so that after I get into my room we can start treatment right away — I just don’t want to wait. My impatience to move towards “cure” is becoming obsessive.

Anyway, my doctor told me I may not be on the same floor as I was the last time. To be honest, that really pisses me off. I really want to be in the same place … I never thought I’d feel that way … but the prospect of having to get accustomed to a whole new floor and staff just isn’t palatable. Send me back to Rhoads 7! We’ll see how that goes.

Update coming soon. Until then, strength and love …

Kisses for Daddy – Another joyous Voodoo visit

Kisses for Daddy – the best version

Originally uploaded by sdpalmer.

Lenna and Brian came to visit on Saturday with Voodoo. This time, there was no mistaking the daddy! Lots of kisses. I took Voodoo for a walk just the two of the us up the Skuykill River and we were both panting from the heat. A bottle of water and a quick walk back and we were both tired after about 45 minutes out in the heat and the sun, hence the resting pictures. Full set available at Flick.

Healthier today …

than I was when I was admitted in to the hospital. Take a at my blook numbers from the day I went to emergency room on February 9th, with those from this past Thursday.

Date	Day	WBC	ANC	Hgb	PLT	Transfusions
10 Feb	Day -3	4.9	147	10.8	25	–
31 May	Today	1.1	264	11.2	68

Admittedly, I had a few more white blood cells back then, but remember that nearly every blood cell was a leukemia blast. And while they’re been showing up in minuscule amounts in my blood now, we’re not talking about anywhere near the amount when we started.