Waiting in New York

We are still in a holding pattern for at least another week. Dr. B. is giving Maura's heart a chance rest and heal. For the first time in nine months, Maura's schedule showed no appointments for almost a week, so Lydia's friend arranged for her to fly to New York on a buddy pass! Thanks, JoAnne! Maura is freezing, but free. She's feeling pretty strong, given that it's been five weeks since her last chemo round. Not quite sure about what she's doing, but she and Lydia are having fun, and I believe Lydia has a few surprises planned.

Good News/ Bad News

Maura's most recent CT Scan showed that her tumors continue to shrink. However, her heart scan and lab work show that her heart muscle may be starting to weaken due to the toxic effects of one of the chemo drugs. She starts some heart medication today, and chemo will be delayed for a couple of weeks pending further evaluation. Platelets are still languishing.

MD Anderson Blood Drive

I haven't confirmed this yet, but I was told that Gateway Baptist Church in Spring (corner of Rayford and Fox Run Blvd.) is having an M D Anderson blood drive this Tuesday, January 6, from 10-4. If you donate at this blood drive or at another MD Anderson location, email me for Maura's medical record number.
And, again, if you can find the time, please think about making the extra effort to donate platelets. I know I sound like a broken record, but I was shocked last week when I observed first-hand the effects of a shortage of blood platelets at the hospital.

Donate Platelets or Whole Blood 713-792-7777

Here's my plug for blood donations, especially platelets, at M D Anderson:

     M D Anderson transfuses more blood and blood products than any hospital in the country. The need never declines, but the donations do.  Maura was lucky yesterday because she was able to get platelets when she needed them. Others weren't so lucky. One patient had already received his pre-transfusion drugs, but the blood bank postponed his order for platelets because he did not meet the criteria for critical need. Another man waited for hours, hoping that the blood bank would acquire more donated platelets, but finally gave up at about 8:00 at night.  

     Donating blood is easy and the pain is minimal. Sure, it hurts to get stuck with the needle, but that's it. The whole operation, from needle stick to band aid and free orange juice, takes 25 minutes. You can donate as often as once every eight weeks. 

     Donating platelets is a little more time consuming, but with no additional pain nor additional needle stick.  In about 60 to 90 minutes, they take your blood, separate out the platelets, and return your red blood cells and plasma to you. Your body makes platelets a lot faster than red blood cells. You can donate platelets as often as every other day. 

     Chemotherapy kills blood cells--red blood cells, white blood cells, platelets--all of them. But the most critical need at MDA is platelets. It takes the platelets of eight donations of whole blood to equal one donation of platelets alone. Low platelets can cause bleeding and bruising, which doesn't sound earth shattering until you realize that internal organs can spontaneously start hemorraging if the body is low in platelets. You can't just apply pressure to your brain to stop its bleeding. 

     So, if you can, please donate platelets or whole blood. If you can't donate, get other people to donate. MDA prefers that people make an appointment the day before donating platelets, since it takes longer. The number to call is 713 792-7777. If you can't get to an MDA donation site, please contact your local Blood Center.

     

Merry Christmas!

Maura had a great Christmas! First, both her sisters are here for Christmas and beyond. She loves to be with her sisters. We had to spend much of Christmas Eve at the hospital for lab work and lab review, but we were together, so we were happy. Missed church, though. Maura checked about returning on Christmas day, but the nurse said more than once that she did not have to come. We knew the nurse had made a mistake, but, we stayed home anyway--I mean, come on, it was Christmas!

Maura's cousins live mostly in California. They all stay in touch fairly regularly and draw names for their own Christmas gift exchange each year. The 2008 Hoggard Cousin Gift Exchange became the 2008 Let's Cheer Up Maura Gift Extravaganza. The cousins and sisters gave her a large boxful of presents of every kind, including a Wii game system and Rock Band. Maura was ecstatic. We drummed, strummed, hummed, and wailed away for hours yesterday. Today, we got home from the hospital at 11:30 pm and the family is rocking out again. Nice.
I love my nieces and nephews. I love their thoughtfulness and their willingness to give up their own present to make Maura happy and show her that they care about her.

Today (well, actually yesterday, since it's after midnight) we spent about thirteen hours at the hospital only to leave without receiving the transfusion of red blood cells that she needed. It was the perfect storm of delays and mishaps. First, it took four hours just to get the lab work results, which showed that Maura needed both plenty of platelets and red blood cells. Then it took hours to get a slot in the transfusion center. She almost didn't get her platelets because of an acute shortage. Their were only 15 bags of platelets in the whole hospital. Only those with platelet numbers under 10 (low normal is 140) or active bleeding were considered critical. Maura's platelets were at 6 today, so she got one bag of the precious golden liquid (okay, it's not golden--it's more of a pukey yellow, but it IS precious). Finally, the lab neglected to do a type and cross, a necessary test before a red blood cell transfusion. Okay. fine. Send a phlebotomist to draw more blood from her torn up veins. The phlebotomist forgot to immediately send the blood to the blood bank. More delays. Our nurse figured that there was no way at this point to get six hours' worth of red blood cells transfused before closing. Duh. By the time the blood bank had finished its protocol and sent the two units of rbc upstairs, we had already been rescheduled for the next morning and were walking out the door.

Our faith in the Promise of Christmas has carried us through these last eight months. My favorite Christmas card received this year is one with the following written on the inside: "This Christmas season and in the new year may you rest in the deep assurance that in knowing Him you have everything."

Food

The five days of chemo in Cycle Nine seemed more difficult than usual. More fatigue, more nausea. Last night the nurse disconnected her from the chemo pump and we celebrated with Taco Bell after the nausea subsided a bit. Most of us would not eat if we were feeling nauseous. Maura has learned to eat despite the nausea, which doesn't go away completely. Her doctor says she is on a seafood diet, or rather, a "see food" diet--if she sees food she wants, then she should eat it. During active chemo days, that means she eats very little, if anything, but then her appetite returns, despite the upset stomach, and she begins to eat normally for the rest of the cycle.

Mystery Shoulder

Someone asked me who belongs to the shirtsleeve in the picture of Maura . It's an Astros shirt and shoulder belonging to former Astro ballplayer Luke Scott. The picture was taken before a game last year. I cut Luke out of the picture for the purposes of this blog. Sorry, Luke.

Night and Day

The perfect time to start chemo is 1:00 in the afternoon. Starting in the morning means dragging Maura out of bed, denying her sleep and rest. Starting in the late afternoon means returning home after midnight, denying me sleep and rest. But, said Goldilocks, starting at 1:00 is just right. We avoid the morning rush both at home and on the freeway. We usually return home close to a normal bedtime, so Maura can more easily fall asleep and avoid the worst of the bleh.
I think I'll start requesting 1:00 and see what happens.

Nine

Maura has had a great week--really, a great round. She has felt strong and energetic. She has recklessly and wonderfully spent fun time with friends and family, stayed up way too late, and possibly done too much, but always with an eye toward Cycle Nine, knowing she would have plenty of enforced down time. So, Nine is here, starting tomorrow, Monday through Friday.

TGIF

Maura has the weekend free! Hurray! We are off transfusion watch for the time being and don't have to return to the hospital until Monday. Platelets were at 57 today--an 18 point jump from yesterday--still quite low, but above the threshold for daily monitoring. The plan to delay treatment remains unchanged, despite the good platelet news, so Maura will have an extra week for her bone marrow to get back up to speed and do what it's supposed to do.

Delay

Maura's next chemo cycle will be delayed because of low platelets. She will have one of the fancy boostherplatelets injections tomorrow and another one next week. Then Dr. B. will re-evaluate.
I understand the importance of getting those platelets up to a level where she won't be in danger of bleeding to death; nevertheless, every time there is a delay in her treatment, I feel a flutter of panic. So, I go back to the concordance at the back of my Bible and start looking up all the verses that have the word trust in them. It's the only thing that calms me when I wake up at 3 a.m. in a cold sweat.

8 Days a Week

Today marked eight days in a row that Maura had to go to MD Anderson for blood work. Tomorrow will be nine. Actually, out of 18 days in this cycle so far, she has not gone to the hospital on only three of them. I'm not complaining, but rather, just pointing out how time-consuming this is. At the beginning of this experience I wrote that taking care of Maura would be a full-time commitment for her and for me, and it has been just that. Friends have helped in so many ways. I'm thankful that Jessica has sometimes taken Maura to the hospital or just come to the house to stay with her so I could go to work.
So, Maura's blood counts are still teetering and we are still on "transfusion watch". But Maura did not take the boosttheredbloodcells injection this cycle, and she has not yet needed a transfusion of red blood cells due to critically low hemoglobin. Her body seems to be maintaining on its own. Nice. And, although she needed a transfusion of platelets again this cycle, she seems to be turning the corner, and her platelets should be going up tomorrow.
Well, that was boring news, wasn't it! More exciting is that Maura has done exceptionally well this cycle. She has felt good, and has enjoyed the company of both her sisters over the Thanksgiving weekend. She cooked the pumpkin pies, the cherry pie, and a banana pudding thingy. Maura also made beer bread for Thanksgiving. It was all delicious and I was surprised to see the burst of energy throughout the holiday weekend, which fell during what should have been difficult days in her chemo cycle. I don't know what helped her more---Bianca (the new dog) or her sisters' presence?
We've seen one of our hospital buddies twice this week. Linda is a woman from the Hill Country who has been living in a hotel across the street from MD Anderson for eight months. when we met her she was confined to a wheel chair. This week she was walking! It is such an encouragement to us to see such progress!
This Thanksgiving has been especially meaningful for us. We have so very much to be thankful for and are blessed beyond measure. Most of the time we are quite happy, despite our concern. And when we are stuck in the muck because of doubt or sadness or confusion, God just tucks us under his arm and carries us across and away from the mud.

Low Blood

After such stellar blood counts on Friday, Maura's blood counts tanked on Monday. Low white blood cell count--0.1--led the way for a 101 fever that came down a bit after drinking plenty of fluids. She was miserable all day, but the fever broke overnight.
Her platelets were at 14 today, only slightly above mandatory transfusion, so they went ahead and scheduled her transfusion for tomorrow anyway. That's a good idea, so we know she'll be okay on Thanksgiving and the day after. In fact, I'm kind of hoping they go ahead and give her a bag of red blood cells while they're at it, so she'll have some energy for the holiday. We'll see how things go tomorrow.
The fever, fatigue, and the low blood counts are to be expected. Nothing out of the ordinary.

Good Blood

Maura had an uneventful 8th cycle (Thank heaven!) and is recovering. Her blood levels were pretty good Friday; so good, in fact, that I began to doubt that they were even hers!
Bianca has been the focus of Maura's energy and attention this week. She sits with Maura for hours and follows her everywhere.

Chemo Puppy

Chemo Cycle 8, Day 1.
Maura slept through chemo and came home to sleep some more. That, by the way, is the best way to go through chemo--wish it could be like that each time.
While she slept, both at the hospital and at home, Joel took a trip to Mesquite (east of Dallas) to pick up a rescued one-year-old Maltese/Poodle mix we'd picked out online. Originally, we were going to get her a dog for Christmas, but we both felt we had found the perfect match for Maura, so, why wait?
The rescue people shaved her coat when they took her in a few weeks ago, so, although she has beautiful blond, wavy hair, she is currently mostly bald. Hmm...sounds familiar.
Maura was surprised to see the dog when she woke up and even more astonished when she realized the dog wasn't just a visitor but her new companion. Bianca (newly named) padded straight to Maura, whose eyes welled up with tears as she hugged Bianca to her chest.
Perfect.

Answers

Maura had a great weekend and a very newsy doctor visit on Monday.
She hung out with her friends most of the weekend, going out as much as possible, knowing that next week she'd be feeling pretty lousy again. it was great to see her feeling so well and energetic.
On Monday, the doctor let us know that she was scheduled for chemo to start this Saturday. That's good because most of the bad days will be over by Thanksgiving.
Maura learned that the Heart Scan showed that her heart is in great shape, which means that she can continue to receive chemo. That's good news.
She also learned that her tumors--the ones that were once called "too numerous to count' are now probably countable. In fact, the doctor took a few minutes right then and there to start counting and he only came up with five. Just five. From "too numerous to count " to "count on one hand" in only six months.
He also said not to get worried about the marker tumors (the ones that are tracked from scan to scan--I think I made up that term, but it's a good term) not decreasing much in size this time. He said that as long as they are decreasing at all, that it is good, and that we should remember that a lot of the total tumor mass is dead tumor, not live tumor. He did add, however, that if they were to open her up, they would find more than five--the buggers hide.
That brought up another subject. We now understand that the ultimate goal is for the tumors to get to a point of containment where they are 100% resectable (removable, operable). So now we know what the goal is: surgery to get rid of the last traces of Toby's evil spawn. When we tell you that Maura is scheduled for surgery, that will be great news.

Hmm...

Well, we didn't exactly get heart scan results. The nurse called and told Maura that she could skip one day of lab work. Yippee! She seemed a bit confused when Maura asked about the heart scan results, but came back saying they were fine and blah blah blah (a bunch of stuff that Maura didn't understand). We figure that's not bad news, but we'll have to call to make sure.

Heart Scan

Maura had an early morning heart scan, which turned out to be a much simpler procedure than a CT-scan--mostly just waiting. The nurse injected her with a special dye, hooked her up to electrodes like an EKG, and then tried to point out different parts of the heart on the screen. Maura said she couldn't identify anything she was seeing as "heart."
Tomorrow evening we will get the results, we think. The scan is necessary to check for signs of damage to the heart muscle, caused by the cumulative dose of the doxirubicin. The scan and the obligatory "transfusion watch" routine were all finished by noon, giving us a short hospital day.

Flu Shots

Maura's doctor has told Maura not to get a flu shot, but he has recommended that those in contact with her get one.

Busy Week

We have an internet connection--hooray! It's been an eventful week.
Sunday-Maura was in a lot of pain. She didn't sleep because of abdominal pain.
Monday- We went to the emergency room early in the morning. They quickly admitted her to an E.R. bed and ordered tests. Thankfully, her tests showed that the pain was from stomach ulcers, caused by the chemo and aggravated by too much stomach acid. A prescription and a couple liters of fluids did the trick and she was released that night.
Wednesday--CT Scan and other tests
Thursday- The doctor told her that the tumors are still shrinking. Yippee!! Blood levels have been low, so she is again under "transfusion watch" (my term, not theirs) which requires daily blood work and consultation with a nurse until further notice.
Friday--Transfusion of platelets, but she got home in time to pass out candy to the trick-or-treaters
Saturday--Feeling pretty good, she and Kara went to see the opera at Sam and attended a Halloween party afterward. She dressed as a Golden Fairy. Kara and Matt ran interference, keeping away all those who looked like they might be carrying germs. And the party's host made everyone use hand sanitizer. Way to go, Colin!
Sunday--None of us expected that her hemoglobin count would go too low today, so we came to the hospital for her lab work and consultation, fully expecting to be able to leave in an hour or two. Oops. Surprise! Instead, she was given two units of blood, and we got home about 9:00 pm.
Tomorrow--a heart scan is scheduled. One of the chemo drugs begins to damage the heart after awhile. It is time to start monitoring her heart for signs of such damage.