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.

Routine

Today is Day 4 of Cycle 7. It's so strange to have a routine that centers around chemotherapy. It is strange that chemotherapy has become routine. Not easy, not fun, but, to a certain extent, routine. Five days before the cycle starts, Maura gets a shot. Three days out, a different shot. Then it's chemo week: Day 1, another shot. Each day I count off the pre-meds and the chemo that hang on the IV poles. Check. Check. Check. Check. Three days of a pill. Check. Pumps working in the chemo backpack. Check. Check. Two days with the red chemo in the backpack. Check. Four days with the two-liter bag. Check. Another shot on Day 5. Five days of drugs. Checkcheckcheckcheckcheck. CBC on Day 4. Check. Blood work every other day. Check. I chart the results. Check. CT-scans, x-rays, appointments. Check. Check. Check. Heparin nightly in both lines. Check. Check. Dressing change. Check.

Laying Low

It has been a pretty good week. Maura's sisters were in town for the weekend, so they had some good sister time together. She misses them very much.
It's been over a week since the transfusions. Her red blood cell count has stayed high (for her) while her platelets dipped again, but not too much. She has since turned the corner and the platelet count is on it's way up. White cells, too. Therefore, plans have resumed for Chemo Cycle 7. Injections on Wednesday and Friday and Chemo starting on Monday.

More Blood

Platelets. Despite the very new (FDA approved only as of late August) producemoreplatelets injections, Maura's platelets are once again down to transfusion level. So, after being here until about 11:00 last night for red blood cells, we are once again awaiting a transfusion of a different blood product. It's worth it. We don't want her to bleed to death. She has no symptoms, but her level is 8 (normal is at least 140), so she needs to be here.  Pray for the platelet drug to kick in over the next few days and for her levels to come back up on their own so chemo won't be delayed again.

Blood

Since the hurricane, we haven't had internet/cable, so I can't update as often as I might like. Today we've been at the hospital since this morning. Low blood counts meant weekend bloodwork. Hemoglobin of 6.4 (roughly half the normal level for a woman, and the lowest she's ever had)meant transfusion of red blood cells today. Mmm, yum. It takes about five or six hours for the transfusion, once we get in a room.  Still, even with such low blood counts, she is in good spirits, but very tired. 

Giggles

Chemo Days for Cycle 6 are finished! Hurray!! Maura tolerated them okay, and her blood counts yesterday were pretty good. She has platelets (yes!); she has white blood cells (yes!). She's still pretty anemic, but we're working on that. The hurricane caused some delays in her schedule and confusion about her treatment, but everything is straightened out now and we're back on track.
Ten days without power, and not seeing much else besides the house and the hospital can get to anyone, and Maura was a bit down. Last week, before chemo, when Maura found out she didn't have to show up at the hospital for a whopping two days in a row, and I found out that there was still no electricity at work, we took advantage of the free time and set out to visit Kara in Austin. That sure chased Maura's blues away! The girls giggled and laughed and played and talked and talked. And when we got back home, we had electricity!!! The perfect end to a perfect outing.

Platelets and Ike, Part 3

Ike has come and gone, and we are all fine. Still no electricity, and we lost our fence and banana tree, but the damage is so very minor compared to those on the coast who lost everything, or even to others in our neighborhood with trees that slammed into their houses. We saw pine trees snapped in half and large oak trees completely uprooted. It's a miracle that our flimsy windows did not break.

On the night of the hurricane, Joel had to stay at the hospital to work, so Maura and I laid up supplies in the bathroom and put our mattresses in the hallway before trying to sleep. We waited in total darkness, not wanting to use up our precious flashlight batteries. The hurricane brought such weird noises. We could hear the wind bending the windows and walls. We could hear the cracking of the pine trees--a bit like the creaking of stiff joints, but a lot louder. We heard branches, pine cones, and unidentified objects hitting our roof and rolling down. And, of course, we heard the howling wind and rain. When the eye passed overhead, it was quiet for awhile, and then the winds started from the opposite direction. Early on, Maura decided that the hallway wasn't where she wanted to be, so she took up her spot in the bathroom for the night.

The hospital's outpatient services were closed for four days, so the transfusion of platelets before the hurricane was a very good thing. During our visit with the doctor last Tuesday, he recommended a new drug to combat thrombocytopenia, a big word meaning that Maura has low platelets, in this case induced by chemotherapy. The drug, administered several days before chemo and immediately after, should help her platelet level return to normal faster, allowing her to stay on her chemo schedule without the delay caused by low blood counts.
So, in preparation for round Six, Maura had the helpherplatelets shot on Friday, and the preventmouthsores shot on Sunday, and chemo starts on Wednesday.

And we continue to be blessed, especially in Ike's wake.

Platelets and Ike Part 2

Yesterday, the decision about bloodwork was made for us. Dr. Benjamin told Maura that she had to go to MDAnderson regardless of how long it took us to return. As we drove south to the medical center in the morning, we saw that the northbound lanes of I-45 were already filled with the bumper to bumper traffic of evacuees. Oh, well--we would soon be part of that mess. Still, it was a good thing we made the trip in. Maura's platelets had dropped to 12. Since outpatient services at the hospital would be closed on Friday and Saturday due to Hurricane Ike, Dr. B ordered a platelet transfusion just to be safe (10 is the normal threshhold). We prepared for the long ride back to Spring after the transfusion, about 7 pm, and, to our surprise, I-45 was clear. Yippee!

We are prepared for the worst hurricane to hit Houston in at least the 21 years that we have lived here. Water, duct tape, food supplies, flashlights, gas in the car, Maura's medical supplies, a couple of good books. Joel has already gone to work at the hospital. Since Tropical Storm-force winds and rain are expected in our area tonight, about the time he gets off work, it's pretty certain he won't come home tonight. Maura and I would be allowed to stay at the hospital, but her white blood cell count is so low, that the hospital isn't necessarily the safest environment for her. If we get scared, this afternoon, we might go anyway. I'm very thankful that we are prepared, that we have close friends and neighbors to run to, if the need arises.
Of course, Danielle and Lydia's flights were cancelled. They were both in tears, not being able to come home to see Maura. And it's never fun to be far away when those you love are facing a crisis.
Pray for Houston and the surrounding area. Pray for the people with medical conditions that are compromised because of the storm. It's going to be a long weekend and a long recovery season.

Platelets and Hurricane Ike

Low platelets.  Even after her platelet transfusion last week, she still has a low platelet count--14 at last check, just 4 points away from transfusion levels. 

 The bad news is that, because of low platelets,chemo has been delayed for a few days.

The good news is that, because of low platelets, chemo has been delayed for a few days.

I've been doing a little research, trying to find foods that increase platelet counts, as well as hemoglobin and white blood cells.  thank God that we all love salad! Leafy greens, spinach, broccoli, and beans all seem to be on the list of great foods. Yum yum. Really, we do love those good foods and, frankly, I am the best salad-maker that I know. I can't cook worth a darn, but, oh, my salads are really tasty, if I do say so myself.  If you ever invite me to a pot luck, ask me to make a green salad.  For your own sake don't ask me to make a casserole--my brand of creativity and casseroles are not a good match.

But I digress...

Folic acid and vitamin K are the only things I've found that might (notice the italics) increase platelet count. Most sites seems to say there is nothing that can be done to increase platelets. What a sucky attitude-nothing can be done==of course something can be done. I may not know what it is yet, but, duh. 

So Ike is in the Gulf and flooding in Houston is an almost certainty. Sigh. So we have to figure out if we need to get Maura for her daily blood test today. We can get to MD Anderson without too much trouble today, but returning, we would be in the midst of heavy traffic due to coastal evacuations. We're not sure how bad it will be today. We don't want to get stuck on the freeway or risk getting in an accident (low platelets means no clotting which means bleeding to death) and we don't want to add to the congestion. So, decisions, decisions, how badly does Maura need that blood work today? At least we know that her chemo will not be interrupted this time because of a hurricane.

For those of you who live far away, know that we have never flooded or needed to evacuate. We don't live that close to the coast or in a low-lying area. So, don't worry about us in a hurricane. We just hunker down and wait for the electricity to go out, which it will. We're fine.

The hurricane itself will only be an inconvenience for us. Maura's two sisters were supposed to fly in for the weekend. Their flights may be cancelled. Bummer. And Joel is scheduled to work this weekend, but during a natural disaster of this kind, he usually has to stay overnight at the hospital, so we may not see him for two days. Double bummer.

 

Stand Up to Cancer

This evening the three major networks will jointly sponsor Stand Up to Cancer to benefit cancer research.  My only frustration is that I did not see sarcoma mentioned even once in the advertising for the event. It's just too rare--most people have never heard of it. Unfortunately for Maura and those also afflicted by this disease, the bulk of the funding for cancer research goes to the biggies: breast, colon, lung, prostate-carcinomas and lymphoma.  Nevertheless, I encourage anyone who reads this to watch the show. 

Transfusions

Maura had a couple of different transfusions over the last week or so. On the last day of chemo they gave her two units of red blood cells. Then, yesterday, her platelet count was so low (7) that they gave her 6 units of platelets.  Maura needs to go in for extra days of bloodwork until her counts come back up.  Platelets gave Maura an allergic reaction--not uncommon. Despite medication to prevent such reactions, she broke out in hives, her eyes puffed up, and she used a box of kleenex. 

You Know You Are Sick When...

You know you are sick when they put you to the head of the line in the emergency room.
Yesterday we spent about eight hours in the E.R. bececause Maura's fever spiked to 101.4. Once it hits 101 the MD Anderson protocol is "get thee to the hospital." I got to admit that I was a little nervous that they gave her a room so quickly. After all, the waiting room was full of people who had been there for much longer than the 15 minutes or so that we waited. To Maura's great joy, they discharged her at around midnight, allowing us to treat her with oral antibiotics. Blood cultures won't come back until tomorrow, but, until then, she'll sleep better at home than in the hospital.