Tag Archives: Chromogenic Factor X

“Going Mobile”

Discharge day! We’re thrilled! The post title is an appropriate song by The Who. Today’s events went like this:

10:45 am: It sounds like the doctors are happier with her heparin blood level. The heparin IV could come out today. Because her Chromogenic Factor X test takes several hours, we will not know if she can go home. If she does stay, she will move to a different room on 8th floor. Fairview is stripping and cleaning the floors and performing maintenance checks on the rooms. “Hurry up and wait” is the theme for today.

2:00 pm: The expectation of a hospital stay is for the patient to focus on recovery. Fairview Southdale has been exceptional in that regard. Certain administrative obligations pop up detracting from recovery, like dealing with the short-term disability people. “Benefits coordination” is an oxymoron in that company. Lucy got passed to three people so far and each of them asked the same questions. They were just as clueless after her surgery nearly two years ago.

3:00 pm: Lucy’s Chromogenic Factor X result was at the midpoint of her therapeutic range. Her Coumadin dose is set and she has her instructions. The IV lines are removed and she is dressed. Everything is loaded and she has her walker. All that remains is waiting for the pharmacy to fill her prescriptions.

5:30 pm: The pharmacy finally asked for her prescription insurance card. She has a new drug plan this year and the old information was still on file, and there always is a delay when painkillers are involved. Lucy is moving with more confidence after the IV tree went away. Her friend Diane called while I was loading the vehicle. Lucy also called her siblings during the wait. The sunset was nice.

6:10 pm: Lucy headed home wondering what sort of mess waits after me having full run of the house for the past eleven days. She didn’t cringe after touring the house, so I think I did all right. I think the chicken strip dinner I picked up for her at Dairy Queen also helped.

Our house is a rambler with a basement. The basement has a rec room, a laundry room, an office, a ¾ bathroom, and a storage area. The bedrooms are on the main level. One of the guest rooms is now an office for her. She doesn’t need to go downstairs until her leg is better. Most of the main level has laminate flooring. She is navigating the walker quite well in the house.

I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.

Lucy’s next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her medical leave got extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.

We’re happy being home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!
I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.

Lucy’s next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her leave was extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.

We’re happy to be home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!

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“Sunday Sunday”

Lucy's birthday gifts

Lucy’s birthday gifts

The yellow bouquet is from Steve and Liz, the elephant is from Diane, and the pink rose bouquet is from Anh-Thu and Karen. And yes, the flash on my phone camera stinks. Motorola puts a 5-megapixel camera on the phone and uses a kid’s toy LED for the flash. Go figure.

Today’s post title is an obscure song by Blur.

Lucy had a chorus of nurses and nurse’s assistants come in and sing “Happy Birthday” to her this morning. That was really nice! Steve and Liz brought a strawberry tart cake. Julie and Suzy came by for a few hours, so Lucy had all her siblings here. Everyone got to see Lucy go for a walk with the Occupational Therapy person. Lucy also had someone from Physical Therapy come by. They worked on some exercises and Lucy has some new ones to add to the mix. Lucy’s dad called to wish her happy birthday and see how she was doing. Lucy didn’t wear a hat or scarf today so everyone got to see how much hair she has. I think that is the first time she went “topless” since she lost her hair in the first cycle of chemo.

Suzy and Julie did get to see Lucy’s leg uncovered and it may have been a bit unpleasant for them. Lucy assured them it was a lot worse and much more painful eleven days ago. Her leg looks like it had sunburn with a little peeling in a couple of areas. There are areas on her lower leg where the color is getting towards normal. Her leg is slightly warm to the touch rather than hot. She has full sensation in her leg and it is not painful to touch it.

Dr. Singh came by to check on Lucy’s progress. Lucy’s Chromogenic Factor X reading today was in therapeutic range. She will have the heparin drop through the night and will have blood drawn for another test tomorrow. The results will be back in the early afternoon. If the Chromogenic Factor X test is in the therapeutic range again, Lucy could get discharged. The transfusion last night took her hemoglobin up to 10.7. It’s been awhile since it was close to normal.

We will have some questions for the discharge meeting. There will need to be some appointments set up to test her blood. The hospital will lend her a walker for a week or two. We will also need a list of symptoms that would necessitate calling the doctor or a making a trip to the hospital. It is very possible Lucy will need to extend her disability leave another week.

There is a minor issue with pain management that still needs a resolution. Lucy knows that she will not be totally pain-free tomorrow. It will take a week or two for her leg to get back to normal. Her pain increases when she puts weight on her ankle. After she sits down, the pain starts subsiding. It sounds like the pain increase is not much. She describes it as annoying when she walks. It does not keep her awake at night and it does not distract her when she is sitting with her leg propped up. Lucy has been fortunate to have never required hospitalization until her surgery in April 2010. She has never broken a bone or needed stitches. All the stuff she is going through is uncharted waters to her. It’s hard for her to describe what type of pain, or how much pain she feels. Now that she has told them when she feels an increase in pain and when it starts to diminish, some of the concerns have abated.

We’re cautiously optimistic about her going home tomorrow. It really depends on the blood test. Please keep your fingers crossed for her!

Thank you for all the birthday wishes today for Lucy! Lucy is lucky to have such an amazing group of supporters!

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“The ankle bone is connected to the shin bone…”

The ankle is more complex than a single bone and “Dry Bones” was not intended as an anatomy lesson in song. It is somewhat applicable because Lucy is walking better. Her ankle is pointing forward (12 o’clock) instead of away from her body (2 o’clock). Yesterday she would walk mostly on the ball of her right foot. Today she can get her foot flat and bend it forward towards the ball. She is getting the hang of it. Today she managed to use the bathroom. Two days ago, she couldn’t walk but half that distance. The walker will be temporary.

Her hemoglobin went up from yesterday. It is now at 8.7. It’s been a couple of months since her hemoglobin has stayed steady or has risen a couple of days after a transfusion. Her platelets were 212,000 and her white count was at 5.6. Those counts have vastly improved from when she arrived nine days ago. It sounds like she is in “therapeutic range” for her INR. The Chromogenic Factor X test result was not quite in therapeutic range. Dr. Thurmes came by and explained the results. His feeling is Lucy will be in the hospital until at least Sunday now. Lovenox injections might have been an option, but Lucy was on those for her clots. The heparin is working and they monitor and adjust the dosage as needed.

Lucy managed a walk of about 100 feet tonight with only a small stop to turn her walker around. The Physical Therapy people commented on how pleased they were with the distance. She got her exercise in tonight. There is a Meditation Sanctuary on this floor that she wants to see because of the water feature.

In addition to the various hospital staff in and out of her room today, Lucy had some visitors. Her supervisor and supervisor’s supervisor came by for about 45 minutes. Anh-Thu brought in a beautiful flower arrangement that she had designed. Lucy has some really great co-workers!

Lucy’s sister Julie came by tonight for a couple of hours and brought us some lemon chicken from Leeann Chin. The hospital food is all right, but has a limited menu selection. Lucy does not have dietary restrictions. It was really nice seeing Julie!

Lucy is staying positive. She does get frustrated at times, and so do I. We know this journey will be a battle and there will always be unknowns. That is why the victories both large and small are cause for celebration.

Thank you, everyone!

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Slowly becoming untethered

Lucy is continuing to make progress. Her calf diameter is another ½ cm. (0.2″) smaller. She no longer needs her pain pump and is taking oral pain medication. Her hemoglobin dropped very slightly from 8.1 to 7.8. However, her white count is now in the normal range. She still needs assistance getting out of bed and cannot walk more than a couple of steps on her right leg. Physical Therapy will be by tomorrow to see what else they can do. Lucy would like more mobility. She has always enjoyed walking for recreation and exercise.

Lucy’s friend Diane visited us this afternoon and brought a little stuffed “Hug Me” elephant. That really brightened Lucy’s day. Yesterday’s delay in Lucy’s procedure precluded her sister Julie from coming to visit. Julie and Lucy have been on the phone a few times. Those calls also brighten her day. We know her sister Suzy is under the weather and we hope she feels better soon.

We don’t have a firm idea of when Lucy can go home. The two main milestones are getting her off IV heparin and they would like to see her calf less swollen and red. Her Coumadin restarted yesterday. Since the INR test will not be accurate, they are using a Chromogenic Factor X test instead.

Molly and Dr. Nashawaty from Minnesota Oncology checked in on Lucy this afternoon.

Lucy has a “Braden risk” bracelet. That means she is at risk for pressure ulcers (“bed sores” is the archaic term). She tries to change her position in bed regularly and so far has no signs of pressure ulcers. The risk will vanish when she is more mobile. It is not a cause for alarm.

Cellulitis is a concern. She is still getting Levaquin once per day as a preventative. And yes, the medical term for “preventative” is “prophylactic”. Lucy is not showing any symptoms of cellulitis.

That’s all for tonight. We’re very touched by the number of people reading the blog. It means the world to us!

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