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.

Gratitude

I am reminded daily of the value of friends and family as we wade through this difficult time. Thank you. Okay, this is not a substitute for thank you notes. I know Miss Manners would never accept a blogged thank you note, and, quite frankly, I can't even begin to count the gestures of kindness that we have received. Visits, cards, vegetables, meals, miracles in envelopes, brownies and other treats, prayers, loaned dvds, books, cheer in a box, home-made posters, photos, agghhh...I shouldn't have started because there is no way I'll remember them all. It's not like wedding gifts , which are all opened at the same time, and are all tangible, and, while the bride and groom ooh and aah over each crystal candleholder, there's someone sitting behind them with a tablet and pen, writing down all the names and what was given. This isn't that organized--I'm not that organized. This is as random as the gifts we receive. I want to say thank you to the older couple that sends Maura a card almost every week. You should see how it puts a smile on her face. I want to thank her friends who would think I'm weird for thanking them just for hanging out at our house. I want to thank the friend who left my washed and ironed blouse hanging on my front door...I think I know how you got a hold of it, but I'm not sure. I want to thank the young friend who was so moved when she saw Maura in so much pain, that she actually bought and offered me...um...an illegal substance...in the hopes that Maura would take it to relieve her suffering. I want to thank that colleague at the college who understands that I just don't care about anything at work like I used to and who understands that it's a temporary condition. I want to thank the colleague who said that my newfound perspective is an improvement. I want to thank strangers who let us know that they are praying for Maura. I want to thank the young friend who, just a few weeks into remission herself, committed to be a friend to Maura (and all of us) and has been an amazing and steadfast source of knowledge and strength and black bean burritos. I want to thank those who can handle "bald in the land of big hair", and those who at least try. I want to thank God because he sends these hundreds of wonderful people as proof of his love.

Chemo Days for Cycle 5 are behind us. No life-threatening issues, although Maura did get a transfusion of two units of red blood cells yesterday. Fortunately, it was not under the same scary circumstances as at the end of chemo in Cycle 3. Nevertheless, it's disturbing that her red blood cell count is not recovering quickly. The transfusion has not perked her up as we might have liked--no burst of energy today. Instead, she is very quiet, too tired to engage in conversation.

My God, how I love this person.

Tired

We arrived home at 1:30 a.m. following Day 2 of chemo. The chemo units were very busy today, so we waited several hours past our appointment time before they could get us a room. In the meantime the pump beeped to let us know that the chemo bags were empty. I took care of it myself in the waiting room. Since Tropical Storm Edouard, I've become an expert at disconnecting her from the pump when needed. And that beeping sound...when this is over, I never want to hear that beep beep beep again. Maura came home exhausted, somewhat nauseated, but otherwise, okay.
She is losing her eyelashes. She has a single bottom lash left, and the top ones are thinned out. Small price to pay for tumor termination.

Amen

Today Maura had CT scans and a visit with her oncologist, Dr. Benjamin, chair of the Sarcoma Center of M D Anderson--a guy who's seen more sarcoma than almost anyone in the world. Today, Dr. B. told Maura that, in disease as extensive as hers, she is having one of the best responses to chemo that he has ever seen.
Thank you, God.
Amen. :)
p.s. Cycle 5 starts on Sunday.

By Popular Demand

Maura's chili recipe will be at the end of this post.

 It's been a quiet week.  Blood counts have been very low as expected, but they are starting to climb back up now.  The week has been predictable, which is good. When she felt bad, we knew why and we also knew that it was temporary. 

Here is Maura's vegetarian chili recipe:

1/2 medium onion, diced

1 can diced tomatoes

1 can tomato sauce (same size as the diced tomatoes)

1 can beans (red or black or kidney or your favorite)

1 pkg. Morning Star Meal Starter Crumbles (in the vegetarian frozen food section...looks like ground beef)

1 pkg chili seasoning

Sautee crumbles and onion on medium heat in a large frying pan.

Add other ingredients.   Stir over medium heat until hot. Serve. 

Optional: Serve with sour cream and grated cheddar cheese

Tastes good with a side of corn bread.

Wasn't that easy?

Just A Touch Of Bleh

There are reasons for taking anti-nausea meds.

Nice

Chemo days of Cycle Four are over. Hurray! This cycle went very smoothly, with the exception of the one-day delay due to Tropical Storm Edouard. Maura refused all the hospital-administered ant-nausea meds on Friday and some of them on Thursday. She felt pretty good, under the circumstances. Her blood pressure and heart rate have been "acceptable." Nice not to have any scares like last cycle. Thanks again to all for the cards and visits. They mean a lot to her-to us.

Cancellation

Day 3 of Chemotherapy is cancelled for Tuesday because of the impending arrival of Hurricane Edouard in the morning. Maura is hooked up to the pump. When the pump beeps tomorrow (when the chemo bags are empty), we will be at home instead of at the hospital. They gave her a quick lesson in how to disconnect from the pump, and then she has the rest of the day off. Chemo resumes on Wednesday(Day 3), both the pump and the "in hospital" drugs.  

Pretty in Pink

Maura and her friends having fun with wild wigs. Don't they look awesome?