More Air, More Better

Just very briefly, Rosina is responding to the treatment, and the oxygen percentage on the ventilator has been lowered to 30%, which is good, it means she is absorbing more oxygen. Her x-ray today was clearer. She's still out and on the ventilator. I was out there this evening and she's doing okay. On the transplant side of things, her White Blood Cell count is up to 10, so that's working. Thanks you all for the encouraging thoughts and words.
xo
ph

(unfortunately) More Woods

I guess this is why we were treading softly. Rosina had a tough night last night. She was coughing and by morning, having a hard time catching her breath. Her oxygen count dropped, her chest xray was less clear than yesterday, and by midday, they had done another bronchoscopy and then they put her back on the ventilator. "Intubated". It is the same Alveolar hemorrhage that she had last week. I'm not sure if it came back or it never went away. It's a diffuse layer of blood inside the lung that makes it hard to absorb oxygen. The ventilator delivers more concentrated oxygen into the lungs and gets your levels up. She is steady now. She's is taking a couple of meds that are aimed at stopping the bleeding so that the lungs can heal. The doctors would say that this is uncommon, but they have seen it before. Also as before, she is sedated and basically out of it. Ugh.

Sitting in the back of my mind is the fact that this is a symptom not of the illness, but of the treatment. That's a pebble in my shoe. No one has made any errors, it just is that way. The good part of the treatment is that her marrow is great and all her organs are fine and she has no infections. The transplant has been successful with that. The rest we have to deal with and ride out.

A friend was working with the Rolling Stones once and he asked Keith Richards if they had any demos of the songs so he could prepare for recording. Keith faxed him back: "Improvise, adapt, overcome".

Think positive! (and overcome)
xo
ph

Tread Softly

Day 18 since the transplant, 29 days in the hospital.
I spoke with Doctor Forman this morning. He is pleased with Rosina's progress, but is still cautious about her condition. He said that her marrow is doing really well and the numbers are way up, but this whole process must still be watched carefully. He wants her to stay in the ICU for now to make sure that her lungs are truly good, and stay on top of other things that need watching. So, tread softly.

Last night I sat on the edge of the bed at home, drank some water, pulled up the covers and adjusted the pillows. Right now, Rosina can't do any of these things. The six days that she spent "under" has made her very weak; she can't lift her arms. That's going to take some work to get that going, and she's having daily visits with a physical therapist. It's been difficult for her to talk, but that's getting stronger. Her new favorite activity is chewing ice, although she can't swallow the water. The doctor says that best case scenario, if all is going well, she'll be out in about three more weeks. We've always been told that there will be a big boring stretch of this hospital stay, let's hope it's starts soon!

Soon she'll be able to read the plethora of comments and notes and mail - thanks for all that.

xo
ph

Looking Up (with a ways to go)

This is like a moment in a movie where the hero has achieved his goal, but is still stuck in a coal mine, or on a runaway train, or has to land the damaged space ship safely. Rosina was taken off the ventilator this morning at nine, and her white blood cell count had risen to 4.9 by the end of the day, a huge leap. Both of these are good and a relief to those of us standing by, but for her, she's woken up into a difficult time. Her body is sore, she's very weak, she can barely speak, and is having a hard time getting comfortable in any position.

The first two things she said to me were "My back" and "I'm afraid". This will all pass, but I know that for her, looking up, it's a long way to the surface. I told her that things were going well, to think of every calm, positive image she could, and let all the other thoughts slip away. I encourage you to do the same. In fact, let's all do that - think of one simple smiling image of Rosina and keep it in your head. I have a bunch. They tend to be surrounded by green or ocean.

She will most likely stay in the ICU for another day and then go back up to the Bone Marrow Transplant floor. The care in the ICU has been excellent and the nurses there are fantastic, both with their skills and their patience. As crazy as it seems sometimes, this level of health care is so sophisticated and really a privilege.

Will keep you posted from the edge of the woods.

xo
ph

An Exhale

Yesterday I came down to see Rosina and all was basically the same. It's frustrating when there's really nothing you can do but wait. The hospital was pretty quiet. I went back up the hill.

I called in this morning and the nurse told me that they were planning to take her off the ventilator. I came down from Lake Arrowhead with my mother. Turns out they are going to wait until tomorrow (Sun) to take out the "vent" ("extubate" as it's called) but the news is generally good. Her eyes are open, she's squeezing my hand, and she can hear all the brazilian music I'm playing in the room. She has no bleeding, is doing more breathing by herself, and, very good news, her white blood cell count is beginning to rise. Today it's at 1.1. Two days ago it was at .2. We want it to get up to 4+. That's really why she's here - to see the donor white count go up. It's working. UPDATE: Later, same day - the white blood cell count is up to 1.6. Go white cells!


So many tremendous messages over thanksgiving, I read most of them to her. I know she'll read them all again. Thanks (for giving)!

xo
ph

Still on the Road - Day 13

Not much change. The x-ray of her chest showed that there was still some blood there. They did a second broncoscopy and saw that the condition hadn't improved with the steroid treatment. So they've added Novoseven, also known by the name Coagulant Factor VIIa (recombinant) which is a coagulant. She is calm and asleep. And they tell me she won't remember this part. I'm glad about that. I talk in her ear and I don't know if she can understand it, but it's certainly a familiar vibration.

We have received a cornucopia of Thanksgiving invitations and thanks to all for that. Many wonderful offers. I wish there was one every day and we could just keep going to them. But we'll be going up to Lake Arrowhead tomorrow for our tradition of the last few years at the McDonald's house. We met Chris and Lupe in a birthing class before our first kids were born, 17 years ago. Give thanks, and raise a glass to Rosina!
xo
ph

PS Went to see her today - Thanksgiving - and she was still pretty much the same. A slight fever, but they believe her lungs are a bit better.

Hang Loose, Hang Tight

Rosina is still in the ICU, and still on the ventilator. The results so far (that I know of) show that there was nothing in her lungs but the blood that had seeped in there, which means no infections - bacterial or fungal - which is good. It probably also means that she has Diffuse Aveolar Hemorrhage. It's a bleeding that occurs in the little sacks that take oxygen in to the blood. They don't know exactly what causes it, but it's certain that heavy duty chemo and radiation followed by an allogeneic bone marrow transplant make it happen. It occurs in about 5% of transplant patients and is one thing on a long list of possible complications that can follow a BMT. The treatment for it is steroids, and while it is a dangerous condition, it can be stopped and made to go away. Go away, says I. She is getting chest x-rays and they can see cloudy white indications that it is still there. As it clears up and she is getting enough oxygen by herself, they can start to remove the tube from her throat. This process takes about a day as you have to make sure the patient is gradually awoken and can breath by themselves before you remove the tube. I'm guessing it's not really comfortable, but it's also not uncommon.

She is sleeping peacefully. She was starting to get some redness like a rash on her arm which worried her a lot because she had a bad rash during her first round of chemo in July, but that redness seems to have faded away. That's good. She'll be happy about that. I was over there today and put on some music for her. It was one of her Brazilian music CDs from a few years ago, "Rosina's Sweet Brasil". Definitely comforting sounds for her. Play it if you got it.
My parents arrived here today to help out, it's great to see them. It'll be nice for Rosina when she wakes up. I imagine it's been hard for them to be so far away from us during all this. There are so many of us who drifted here to Los Angeles without much immediate family close by. In our case, it has been an incredible outpouring of friends and community and we are so grateful for all of it. By the way, I'm asked all the time about how I'm doing, and I'm doing fine! Busy, yes, but fine. Please direct your positive thoughts toward Rosina, she's the sweet little train going up the hill. All the comments and emails are great; thanks. Will keep you posted.

xo
ph

Day 10

This morning Rosina was moved to the ICU. As part of her “vitals” - temperature, blood pressure, pulse – they also measure her oxygen intake. It is normally around 100% or maybe 98%. This morning it was at 78%. Dr. Forman was there and they started by giving her an oxygen mask. It brought the levels up, but without the mask, they went back down, which meant something is wrong with her breathing. They brought her downstairs to the ICU. They gave her a tube in her throat and a ventilator – a breathing machine - the whole deal. They did a bronoscopy where they look inside the throat and lungs with a camera and take pictures. She has some bleeding in her lungs. They’re not sure yet what it is causing it yet, probably some kind of infection – bacterial, fungal, etc., but the test results aren’t in quite yet. Her heart is okay (another possible reason for weak oxygen intake). They just need to be extremely careful and diligent because her body has no defenses right now. She is basically knocked out as is normal for someone with a tube in their throat. For a while they keep your wrists secured to the side of the bed so you don’t accidentally wake up and pull at the tube. They took those off.

Okay, update, Dr. Forman just came by (I'm in her room). He said that this happens sometimes, but not often, as a symptom of a transplant. But they don’t really know why. Most likely there is an infection that is causing the bleeding. They send the info from the broncoscopy to several departments to assess. An infectious disease doctor has been by, a cardiologist, and the doctor who did the broncoscopy. Dr. Foreman said that she has been doing well today and they’ve been able to lower the amount of oxygen that they’re pushing down to the minimum level, which is good. She will probably be on the ventilator until Wednesday. It’s an odd machine – it breathes. In fact, if I’m sitting on a stool next to her bed holding her hand, the vent on the side on the machine exhales her breath right on me.

So, it’s not a panic time, but nobody wants to go to the ICU, patient or visitor. From day zero (November 9th) to around day seventeen (November 26th) you are walking through some dry dry land. But – everything seems to be okay.


xo
ph

Long Daze (day 9)

I was thinking that the last two entry titles were puns, but they're not, they're double entendres. All meanings are true for "The Weight" and "Long Daze". Those "days" have been tough, without much change. Rosina is still barely able to sip some water, has pains sort of like gas pains jab at her sides when she changes positions, and is still quite groggy from the meds. Unfortunately, she's not groggy enough to sleep very much. I spent the night in her room of Friday and she really only slept for ten or fifteen minutes at a time. It's a long night for all. Sandra was there last night (again) and it was the same. Rosina now has a standing order from the doctor that if none of us are staying there, she'll have a sitter who watches her all night and helps with whatever. I believe all this should start to taper off this week. So far there are no negative reactions to the transplant, but it will still be another week or five days before the white blood cells start appearing. That will be good. I will be out there tomorrow for the night. Keep you posted.
xo
ph

The Weight - Day 5 & 6

Everything is difficult, yet okay. Day 5 & 6 refers to the count of days since the marrow transplant, the day of getting it being "day zero". She's actually been in the hospital for 18 days so far. Rosina is riding it our right now, confined to her room with a white blood cell count of 0.01 (aka 0). The nasty mouth and throat thing is called mucositis and is common with chemo, more common with chemo and radiation, and very common with people who are having bone marrow transplant treatment. She is at "stage 4" which is qualified by the fact that you cannot swallow. At all. You cannot swallow a sip of water. Talking can be quite difficult. The whole thing lasts about ten days and she has about five more to go. It's obviously unpleasant, although it was worse a few days ago and the doctor says that her mouth looks pretty good, considering. Someone comes by every eight hours to do a mouth treatment which consists of swishing a bunch of medicines and then spraying some stuff in there. She still has the morphine drip, which is the normal pain medication for this, and it has evened things out for her, although it certainly makes you less than alert. Several of us are taking turns spending the night in her room mainly because she can fall alseep at any time, including when she's going to the bathroom. Extra double plus thanks to Sandra and Ann for taking on that duty.

A couple of nights ago at 3am she had a strong pain in her chest and they did an EKG and a chest x-ray there in the room, but it all turned out normal. It's hard to get more than a couple hours sleep at any one time, though. I was not feeling well yesterday morning and have not been out in the last two days; you have to be very cautious.

Nina and I went to see Caetano Veloso, a Brazilian singer, last night, and we called Rosina four times so she could hear the music over the phone. She sang along. All in all, she is hanging tough, forging ahead, and gaining ground in her road trip. Thanks all, for the support.
xo
ph

Inspiration for Rosina

I'm reprinting this Corcovado picture because I found the perfect companion for it - two things to look forward to seeing. love you m
ph

Today is Taking Forever

That's what Rosina said to me this morning around 11am. So far, everything is "normal", which means pretty unpleasant. There have been no signs of infection or toxicity which can occur with a transplant, but there is nausea and pain. The nausea has subsided a bit. Chemo and radiation affects fast growing cells which are cancerous cells, but also cells in your scalp, and your mouth and throat. Her mouth and throat are very painful as they take a hit from the treatment and then you don't have the white blood cells to repair them. It's a typical complication and lasts for about ten days. She has a morphine drip and is laying low. So many drugs! Sheesh. There are probably about ten or more active things going in her body during a typical day. She just needs to exhale and float down the river. Thanks for all the good thoughts.
xo
ph

Day Zero - November 9

This was earlier today when Rosina got to video chat with Brasil. Honestly, it was one of the few smiles of the morning. Lots of anxious tears surrounded it. Rosina is getting the bone marrow transfusion as I write.

The nurse went and got “the product” in this cooler labeled “BMT”. It’s a Coleman 8, which I think means that it can hold eight beers. It can also hold two bags of product. Without much fanfare, they did the two nurse crosscheck, which I like to call the “missile silo routine”, to make sure that she is who she is and it is for her, and then they plugged it in and it ran into her chest. She took a nap.

The donor bag is hanging on the left side of the IV stand. It's the big one with the red stuff. There are actually two bags for a total of about 1000mls, or four units of blood. An hour or so before it started I told our friend Jim that when they do it, light would shoot out her fingertips and a golden fan would appear behind her head, and he replied, “Doesn’t she do that already?” Yeah, she does.

Her white blood cell count is at zero right now. With her previous chemo, they got knocked to zero and then came back up. This time, her own cells cannot come back up, but the new ones will. It will take a couple of weeks just to start coming up.

I was looking at the label on the bag and noticed a couple things. One, the identity of the donor is not shared for a year, but – clue - I see that this marrow is from the British Bone Marrow Registry, and two, below the “O” blood type, it says “Rh Positive”, which is nice when your initials are “RH”!

Thanks everyone for sending your positive thoughts, prayers, juju and mojo!
xo
ph

Not Quite Day Zero After All

It's Thursday at 2pm and the bone marrow transplant had been scheduled for today. Due to travel time for the delivery of the "product" as they call it, Rosina was told that the transfusion/transplant would take place at 2am Friday morning. Now we have just heard that due to a flight delay, the transplant won't be arriving until tomorrow morning at 9 or 10am, so the transfusion should happen sometime around mid-day. It's kind of uneventful, it's truly like getting a transfusion, but Rosina's ready to do it. She hasn't been feeling too great and is just laying low, hanging out right now.
xo
ph

Minus Two

This was ten days ago. I cut my hair three days ago after an entire year. Phew!

Just a quick update. Rosina has finished her chemo and her radiation in preparation for her BMT. She's been feeling a little better but has this lingering nausea and really hasn't eaten much at all for the past week. They have her getting all kinds of liquids and stuff so that's not a big problem. So in any case, she hasn't had any complaints about the food. There have been visitors, and thanks to all of you who've trekked out there. A got a call today from the blood donor place that she tested positive for antibodies which means that she can't get platelets from just anybody, it has to be a type match. Because she has no local blood relatives, they will call in regular donors who have that type as well as buying it from the Red Cross. If you are interested in donating platelets, it's unlikely you would match her, and they don't even check your type until the 3rd time you've donated, but they can always use both blood and platelets. there's a link up on the right.

Here's a picture of the sign that greets you when you get off on Rosina's floor. I'll be out there all day thursday and friday as well. Thanks for the mail, email, notes and comments, all are appreciated.
xo
Ph

Day -7 (minus seven)

Rosina is getting a radiation treatment called TMI and I couldn’t remember what it stood for, so I googled “radiation TMI” and what came up was a whole lot about Three Mile Island. I don’t think she’s getting Three Mile Island radiation. It actually stands for Total Marrow Irradiation. Unlike Total Body Radiation, which is a common treatment in preparation for a Bone Marrow Transplant, this treatment pinpoints the areas that it needs to hit, and takes it easy on other parts of your body, like your organs. It uses the 3D map of your body that’s created by a CT scan to program where all the thousands of radiation “beamlets” are focused. You know how when you get an x-ray at the dentist they put a lead blanket on your chest and then the assistant goes behind some kind of Superman-proof wall for safety and they take a snap shot for 1/125th of a second? Here you’re getting that x-ray for an hour and a half - twice a day. However effective, like most cancer treatment, it stinks.

Rosina has been through two sessions a day for the last three days with one more day to go. She’s also getting chemo. It’s making her feel nauseous and achy. She hasn’t been eating, and she’s disappointed as the last two times with the chemo were much easier. This treatment is much stronger.

There is a plethora of drugs for allergies, sleep, pain, nausea etc., and frankly, when you’re doing this, sleeping through it isn’t such a bad idea. She’s hanging tough and will blow through this thing!

The nurses have been nice, you see the same ones much more than at Cedars. There are a lot of people at City of Hope who have been through some kind of cancer treatment there and they are loyal.

Visiting is a bit more sanitary – you need to wears a mask and gloves when you go into rooms on her floor. If you are interested in visiting, the best thing is to give her a call on her cell phone. But, just so you know, she could be sleeping while you’re there – no promises. The visit still counts. There is a link to visiting COH up on the right as well as maps etc.

Thanks as always for all the nice words and notes!

xo
ph

Cry Cry Cry

We had so much stuff to do yesterday to get ready to come to the hospital that we did the obvious - went to the beach! And if you are about to spend 45 days in the hospital, I recommend it highly. Bella and John instigated it and we followed. It was a bit windy but refreshing as always. We ducked behind the dunes at our friend Susan's house and had a picnic. And finally we were rewarded with an amazing sunset as the low low tide left shallow pools of water that reflected the sky brilliantly.

We got to City of Hope at nine this morning and Rosina did a Red Cell Exchange. She was hooked up to a machine that took about 1200 milliliters of A+ blood out of her body, and replaced it with six units (about a pint each) of O+. This is to make the transition easier to the new blood she'll be making, after the marrow transplant, which will be O+. The O+ is shown in the two bags in front, the bag in back is all the blood they took from her skinny body! By the way, by using her height, weight and gender, they calculated that her body holds 3,333 milliliters of blood. Using this same formula, I believe I am holding about nineteen gallons. I'm like a keg of blood. A blood sausage. How come my wife who has Leukemia looks ten times better than me? And thank God she does.

After that she was admitted and we went up to her room. It's on the sixth floor of the Helford Hospital building and looks north toward the mountains. As I sit here now by the window, the sun is going down and it looks pretty nice. The other side of the building looks at concrete freeway structures and giant power lines, so we lucked out.

Along with Chemo, Radiation begins early tomorrow, the very same radiation that created the Fantastic Four, the Incredible Shrinking Man, Spiderman, and a lot of other amazing people who were strong, unique, and wore colorful garments. Rosina already is all this, so I'm trying to imagine how astounding she'll be coming out of there.

re: Cry Cry Cry. I think I put that there more in the tone of a bittersweet song title than an active verb. But it does come and it waves through you and little things can trigger it. Last week, Rosina was talking to Dr. Forman and he asked how she was doing. She said she'd been a little teary, and then he slid his chair just a little closer which made her burst into tears. It don't take much. I think we all need to slide our chairs a little closer!

xo
ph

PS See below for blood donor info.
PPS Visiting info next post

I Want to Suck Your Blood (Halloween edition)

Here's some info about donating blood and platelets for Rosina and City of Hope.

1) City of Hope uses 30,000 units of blood a year and only 58% of that is actually donated at City of Hope. The rest is purchased or comes from the Red Cross. So they always need blood donors of all types.

2) Because of the blood type of Rosina's marrow donor, her blood type is changing from A+ to O+. This means that a "directed donor" for her should be O+. If you would like to donate blood for her, you need to be on her directed donor list, which contains your name, phone, and blood type. Being on the list doesn't mean you have to donate, though. You would also need to do the donation at City of Hope itself. (See link on right for directions and map). Whole blood is good for 35 days. If you want to be on the list, you can email either one of us, or if you don't have those addresses, my email for this blog is whatsupblood@gmail.com.

3) Donating platelets is not related to blood types and any type is a match. If you want to donate platelets for Rosina, know that the shelf life of platelets is only five days, two after they do the tests, so getting the timing right is difficult. Know that you would be helping the cause in general just as someone else is for Rosina. Also, donating platelets can take two hours.

There is a link up on the right side of the page for giving blood at City of Hope as well as the directions. City of Hope is east of Pasadena in Duarte. It's about 40 minutes from our house Hollywood.

The phone number for the Donor center is (626) 471-7171
xo
PH

This thing is used to warm up the blood before it goes in your body. The tube the blood travels through is wrapped around the outside. I believe it's Hammacher Schlemmer's "World's Best Blood Warmer"

Getting Closer

This is not California wildfire smoke, it's the Corcovado statue in Rio peeking above the clouds. We have not been anywhere near the fires that burned this week. They are getting under control now. But as I drove home tonight over Mulholland Highway, a full moon rose over the hills, orange like a pumpkin through the distant smoke. That sounds like a sentence from a tenth grade english essay. Not that I ever completed one. Here's what I wrote earlier this week:

Tuesday, the 23rd
Not much new news. We’re sitting in a doctor’s office right now at City of Hope. Rosina is getting the dressing changed on her arm and talking to the Brazilian Nurse about the difficulties of learning medicine in another language. She had a hard time learning “Chicken Pox”. It was too bizarre.

Rosina has to do a bunch of tests that she already did, since her admitting was pushed a month. Today is Tuesday, she needs to come back on Friday for some things, and then Monday the 29th she comes to stay for a while. That is referred to as Day –10 (minus ten). Day zero, Nov 8, is the infusion of ”fresh donor marrow” (it’s organic!), delivered as a transfusion. Before that, radiation and chemo to create a clean slate for the new bone marrow. I know we all think of bone marrow as the spongy stuff inside a bone (which it is) but the transplant is really a stem cell transplant. This particular treatment for Leukemia is one of the leading treatments using stem cells. (see primer below)

The extra month that she has had at home has been nice, but the gap in her treatment has made the anticipation about getting back into it a bit greater. And this is the toughest part coming up. The support from all of you has been great, all our carpools etc. have been working well, and the never-ending help from Sonia (who turned 40 today [the 23rd]) makes it all work. I’ll have some more regular posts as we move forward and thanks for all.

xo
ph



*********************************
PS What’s the deal with stem cells you ask? Cells in your body have particular tasks – skin cells, cells around your heart, blood cells etc. Stem cells are cells that have not received an assignment yet - "undifferentiated" - which is what makes them so powerful. The potential is to be able to program them to do specific tasks, like grow new heart tissue, or repair the coating around a damaged spinal cord, treat diabetes and all kinds of things. Stem cells can also reproduce without end. It’s a pretty amazing tool. The controversy is not about stem cells themselves or the treatments, it’s because the most robust stem cells, needed for research, are produced by embryos - fertilized eggs. They are undifferentiated cells. Once you have the stem cells, they keep reproducing by themselves, and with enough stem cells, you don’t need to use more embryos. Ethical issues aside, there are legal/political inconsistencies as fertility clinics, for example, are permitted to discard thousands and thousands of embryos, but they are not available for research. Anyway before I ask you to attend a march and let you crash on my futon, Rosina’s stem cell treatment is not controversial but simply a medical miracle, difficult as it is. She will rock the house.

An Apology to All Husbands (and Update)

Of course you love your wife. Of course you want to help her if she's in need. NO, YOU DO NOT NEED TO DO A BLOG TO PROVE YOU CARE. Please make sure your wife sees this before I get into more trouble with Husbands of the World. I like writing (unless I'm getting paid for it and then it's torture), I like taking photographs, and yes, I love my wife. I also like all our friends and family members who just want to know what's going on. Hence, the blog. Anyways...

This is the first week since early June where Rosina has not had a single doctor appointment, although treatment continues. [ed. note: Wrong! She has an appointment on Friday.] Last week, she had three consecutive days at City of Hope. Monday, she met with the pulmonary doctor and with the infectious disease doctor. She also spoke with a social worker who wanted to make sure that Rosina had a circle of support - I think so. Tuesday, we both took a class in taking care of the Hickman catheter that is going to be placed in her chest. It's a tube that goes into a major artery near your heart that gets used for IVs, medication, drawing blood, etc. Unlike the PICC line she currently has, it requires more maintenance. The whole process sort of reminded me of when I helped my father bleed the brakes on his '52 MG TD. You just don't have to get on a car creeper to do it. We also had a visit with Dr. Forman who decided to postpone Rosina's bone marrow biopsy until she was closer to being admitted for the transplant. That was kind of a relief. Rosina appreciated it as she'd already taken the ativan and vicodin on the way there. The donor has committed and will do his part on November 7th. Rosina will get the transplant on November 8th. On Wednesday she had to go in for an outpatient Broncoscopy because of some spotty things that showed up on her lungs in both her CT scan and an X-Ray. That was a four hour visit with general anesthesia. They think that it might be a fungal infection, but so far the tests haven't shown anything. When your white blood counts are low, it's easy to get stuff like that. So far, no alarm. She is, however, taking a medication for it that messes with your vision temporarily. BTW - please check out Steve Martin's essay on side effects. If you've ever taken medication, and I know that you have, you'll enjoy it.

The next big visit is on October 16, another day of assorted poking and prodding. It'll be the same thing the following week and then getting ready to be admitted for about six weeks. So, a little free time here, probably not much blog activity, and the opportunity to relax and even go out to a restaurant while the counts are up. Rosina is feeling okay, taking it easy, and appearing here and there. People ask if I need anything, all I can say is "red wine".

While Rosina is out there with her fuzzy little head, I haven't gotten my hair cut since last Thanksgiving, when the kids buzzed it off on camera while we were making a movie in Lake Arrowhead - an annual tradition with our friends the McDonalds. So I offer this picture of my wife's beautiful noggin, and my scary one.


xo
ph

Back at City Of Hope

It's starting to feel like Astronaut Training Camp. Rosina was out at City of Hope yesterday and today getting "labs", "consults', "pre-op" and being fitted for a custom body cushion that will hold her perfectly still while she gets radiation. That alone took about an hour and a half, which was pretty good because they said it would be two and a half hours of lying on some silicone inflatable with her face covered with mesh material to keep her head from moving and at the same time giving her four permanant pin-point tatoos to use as reference points for the radiation. That's when I start wondering when are they going to put her in a centrifuge to measure how well she takes the G's during liftoff. Rosina is doing a clinical trial, of which they do a lot at City of Hope, with a type of radiation treatment, called TMI, or "timmy" as I like to say, that doesn't irradiate your whole body, it pinpoints where it needs to work. It's a new treatment and is less brutal on your body. She did have a consult with Dr. Wong, who is the boss of radiation who told her all about it. And if you've ever had surgical treatment, you know that they always do this worst case scenario talk which in your mind becomes Very Likely Case Scenario even though you know it's not, but it scares the crap out of you. The great one about radiation treatment is - it can give you cancer! Anyway, I'm just purging that thought here, because we don't think Rosina is anywhere near any of the worst case scenarios, and in fact, expect her treatment to go well.

The treatment itself, however, has been postponed for a month. There are a lot of timing issues that go in to a Bone Marrow Transplant. Radiation has to be done at specific intervals, and the machines that are doing this specific treatment can get booked up. Also, a CT showed something that could possibly be an infection in Rosina's lung, and that has to be declared clear, and the other big timing issue is the marrow donor himself. Once the stem cells are "harvested" from the donor, they need to get into the recipient within around 24 hours. And in this case, that includes flying it from europe (we think). So you need to be ready for that and your prior treament (radiation and chemo) has to be timed just right so you are ready. Basically, you get a date from the donor and then back up ten days to start the treatment. And they could change their minds and/or plans. As of today, the long City of Hope stay is scheduled to commence October 29th.

Next week she's back to City of Hope for more prep stuff. Meet with the lung person, take a class in how to care for the Hickman catheter that has to be installed in her chest, see the doctor, and get a bone marrow biopsy to check on the leukemia remission status. Every one of those things is a big deal in itself and she has to do about fifteen of them just to get ready for the BMT. I say, I say, damn, girl! How'd you get so fly? It's a bit overwhelming, but she's hanging tough. The schedule change is a drag as that will now take her treatment up close to Christmas, but without any other schedule changes, she'll be home then. Thanks everyone for the kind words on locating a donor. That's a big step.
Please excuse the joke, but it's pretty true. Z - I'm very proud of you and how you're going through this, and you look bithcin', by the way. Keep it up, I'm with you.
xo
ph

Fall Colors

I remember one point during this process, during a week of fear and joy, a week of intensity and closeness, a week of mortality, that I thought to myself: I love feeling these emotions – when I’m watching a movie! Honestly there are many times that I am reminded of a headline I saw in the satirical newspaper, The Onion, right after 9/11 which read “Shattered Nation Longs to Return to Meaningless Bullshit”. We don’t really long for that, but I certainly understand the feeling. Two things happen though: you decide that you don’t want the stupid stuff you used to occupy yourself with, and, maybe some of it wasn’t so stupid after all. Hose it down. In any case, it’s rich.

Things have started picking up. I am sitting right now at City of Hope. We are here for a full day of testing and doctor visits – ECO, EKG, blood, lung test, chest x-ray, doctor visit, consent forms, CAT scan. I told Rosina she’s getting more medical treatment in one day than I’ve had in ten years. She said “I want your marrow.” I want your marrow? Is that hot or what? I wanted to French kiss her right through the face mask she’s wearing. The good news is that all of this is in prep for getting a bone marrow transplant, for a donor has been located! All we know is that a 44 year old male somewhere out in the world has a tissue type and stem cells that closely matches Rosina’s and he's willing to share. Wherever he is, he has come in to give blood and to continue the testing, so it looks like we’re on. Yea. (and) Holy crap.

Here’s the schedule. Because we’ve located a donor, Rosina can skip the next round of consolidation chemotherapy that we were planning on. She still has to do chemo before the transplant, though. She will need to come out here for two or three more visits for various things, and then on September 30, she will check in at City of Hope and begin radiation and chemo. Ten days after that begins (after her own body’s ability to make blood cells has been wiped out!), on October 10, she would receive the transplant. This is referred to as Day Zero. From that point you’re looking at 4-5 weeks in the hospital. As she told me on the phone yesterday, “I go in September 30, and I come home before Thanksgiving”. It's a long and intense stay. We saw the rooms at the hospital at COH where she'll be staying. It's really nice and in fact so is everyone we dealt with. You get the feeling that they really want to work at that specific place.

The transplant itself is pretty simple. It’s delivered as a transfusion. Then the new stem cells have to find their way around, get comfortable, and start making more cells. Basically you are getting a new facility for making new blood. It can even change your blood type. And in this case, it will. Rosina is A+, and the donor is O+. That means that Rosina’s blood type will change to O+. In fact, before the transplant itself, they will begin to change her blood over to O+ to make the transition smoother. They’ll literally swap out her blood for some O+. Additionally, it will change her chromosomes from XXY (female) to XY (male)! This has no symptom or effect on a person, it’s like changing a tag on a shirt. However, in some way I suppose it will mean I'm married to a man and gay, which is good, because i'm kind of a slob right now.
Rosina is being strong, she is doing well, and as tough and scary as all this is, things are progressing. We’ve received so many good thoughts and wishes for Rosina since school started and tremendous offers for help, thanks to everyone for that, you may be called! So here's to enjoying the next couple weeks while she's at home and I'll keep you posted.
Thanks
xo
ph

Late Sunday night

Rosina has been recuperating at home this week and her blood numbers have been dropping. On Wednesday, she needed a blood transfusion (she got my blood), and on Friday, she needed a transfusion of platelets. On Sunday she went in to get blood drawn and she did not need to get another transfusion. All this is done via a PICC line in her arm. It's a tube that stays in your arm and has two small valves on it. She's had it since the end of June. They can they use the valves to draw blood, and give you IVs of just about anything - chemo, antibiotics, liquids - as it's a direct line into your bloodstream.

She has been doing well. My brother and sister-in-law, David and Mary, came out for the weekend and have been a big help, especially because I had an overnight trip for work - to Hawaii(!) - and couldn't be here.

Tuesday we may have some info on a possible bone marrow donor. Don't know the details yet, but some things may be moving forward.

xo
ph

How I Spent My Summer Vacation

School is starting for our three kids and I'm guessing that many people will just be finding out about Rosina's condition, so I thought I'd make a little recap of the summer for those who aren't up for reading the whole blog. Newer news is following.

Big Chunky Emotionless Version of the Story:
Toward the end of the last school year, Rosina had a pain in her side and went to get it checked out. It turned out to be nothing, but in the course of getting a normal blood test, it was revealed that her white blood count was very low. A series of blood tests and other stuff followed and on June 5th, she was diagnosed with Myelodysplasia, which was rapidly becoming AML or Acute Myeloid Leukemia. This is a type of fast growing leukemia that requires quick action. She went into Cedars on June 25 and stayed there for 31 days getting induction chemotherapy. She then came home for one month, then returned to Cedars for five days for a round of consolidation chemo. She has now been at home for week. She is looking at another round of consolidation chemo at City of Hope in Duarte, and then after that, the plan is to do a Bone Marrow Transplant which is a month to six week treatment also at the City of Hope. She is generally feeling fine and the treatment is going well. Now, for all the details, and my own little Leukemia tutorial, I invite you to read the posts below. They are in reverse order, though, so for the full reading experience, go all the way to the bottom and click on "old posts" and start from there. I promise that you will learn some things about leukemia, Rosina, and me. It's been quite a summer.


On the new news front, we went yesterday to the cancer clinic at Cedar's for blood work and all the numbers that we follow are going down, which is bad for you, but that's what the treatment is. White blood cells, hemoglobin, platelets, neutrophils, all dropping but she didn't require a transfusion which was nice so we didn't have to stick around. The best news of this past chemo round was that the dreaded rash that she got during induction didn't return. This time she was given some steroids which seemed to keep it away. There was a lot of trepidation about that rash as it was easily the toughest part of the chemo, and it hasn't reappeared. Unfotunately, due to the steroids, Rosina is ineligible for the Tour de France and her shot at the home run record is also out the window. She can, however, bench press 180. It has been super hot here in Los Angeles so everything has been slow and that's been okay. Everyone is getting ready for school by denying it completely. The carpool to Santa Monica has been tricky as Rosina can't be driving around, but our carpooling friends and neighbors have been picking up the slack - thanks so much for that, it's huge! We didn't really have a single day of regular summer activity, certainly no traveling or anything, but we have been able to see a tremendous amount of friends and family, all of whom have been very helpful.

Tomorrow she goes back for more blood work and possible transfusions. Tuesday the 11th, it's back to City of Hope for an appointment with Dr. Forman.

Thanks all for the comments, calls, emails etc.

xo
ph

...and Back Out Again

Rosina left the hospital yesterday night, about 12 hours after her last chemo treatment. She is now doing a home recovery. The real effects of the chemo start to kick in after you've actually finished getting the drugs, so she'll be recuperating at home and then going into the doctor's office almost daily for blood tests, transfusions and stuff like that. Her white blood cell count is dropping, then it will stay low for a bit, and then come back up. There will be some recovery from this and then most likely back to the hospital, this time City of Hope, around the second or third week of September.
More later
xo
ph