She has some guests here at the hospital. Her brother and sister-in-law (Steve and Liz), her sisters (Julie and Suzy), my parents, Lucy’s friend Diane, and a friend of Lucy’s family, Barb, are here. I’ll be here for the duration.
The morphine is making her a bit groggy, but she is able to talk to people. She is alert and fully cognizant. Lucy knows that there is nothing more they can do for her.
Lucy is suffering from septic shock. There are indications her bowel perforated. She is too weak for surgery and her chest X-ray showed significant damage to her organs. At this point, she will be receiving pain medication and the hospital staff will make her as comfortable as possible while she transitions from this existence. The infection is too far advanced for containment by antibiotics. She is weak enough that we may be unable to move her into a hospice or get her back home for her final days. Her vital signs did improve after receiving two units of blood, but she will be anemic again quickly.
None of us knows how much longer Lucy will be with us. However, the end will probably come rather quickly, perhaps within a couple of days. While we will not get a long slow goodbye, she is getting a chance to be with her family. I know I wanted her journey to end with a happily ever after, but I am thankful for every day I had with her.
Please pray for Lucy. She has been incredibly brave through this ordeal. Thank you so much for all the love and support you have given us. I know that has been a recurring theme in my posts, but it helped us more than you can imagine.
Lucy’s stomach issues are a result of one of the cancer growths pressing against her small intestine. She has had a stubborn growth in her lower left abdomen since her debulking surgery. That growth has gotten a bit larger. So while she does not have a full mechanical ileus (intestinal blockage due to an object), she does have a partial ileus. The course of action is to keep on the Hexalen and see if it starts shrinking the tumor.
This setback is still not a reason to hit the panic button. It’s still too early to tell how this will resolve. We all need to stay positive for Lucy. She has the heart of a warrior and a lot of untapped sisu yet. Her clotting problem seems resolved, which is a huge step in the right direction.
Tomorrow she goes in for a two-unit transfusion because her hemoglobin was at 6.4. She has to be at Fairview Southdale at 8:00 am. She did not have to get one tonight because her hemoglobin was over 6.0. It’s nicer driving her home at 1:30 pm than 2:30 am.
Lab work shows no gastrointestinal infection, which is a good sign. She is still taking Pradaxa and Hexalen. After two rounds of nausea late last night and early this morning, Dr. Boente tried having Lucy take Compazine every four hours to see if that helped. It didn’t help much. She will be switching to Ativan, which should offer better relief for the stomach issues. Ativan was originally developed to alleviate nausea and has a bonus of being an anti-anxiety drug.
We tried a couple of simple home remedies that would not affect her medications. I found some ginger ale that has about 1 oz. of ginger per 12 oz. bottle called Reed’s Extra Ginger Brew at Byerly’s in Edina. Most ginger ales use a tiny fraction of that for flavoring. Ginger supposedly has properties that soothe stomach problems, but it seemed to make her even queasier. I like it so least it won’t go to waste.
She tried applesauce for lunch yesterday and wound up with a very rude and quick upset. Apple pectin is another foodstuff that supposedly helps with stomach upset. Ensure and Activia seem to be the only things at this time that don’t cause issues. She tried a couple of unsalted top saltines (sounds like an oxymoron, doesn’t it) and they do not seem to help though she tolerated them well. She is drinking about a pint of Gatorade or Powerade a day to keep her electrolytes up.
Yesterday and today were more the typical gray and slightly drizzly March days, albeit about 20°F warmer than average. Tonight should bring more rain. We are in a moderate drought now, so the rain is welcome. The frost is out of the ground and the rain can actually soak in. Most of the lakes in the Twin Cities metro are reporting “ice out” which is almost a month early. At least the flowering shrubs like the weather:
The warm weather and rain kicked our forsythia bush into gear.
That’s a great question to ask someone doing the limbo dance, but not for Lucy’s hemoglobin level. She had a port draw today and came in at 5.3. We knew she was getting low because her low energy level and pale color. That necessitated an immediate transfusion at Fairview Southdale. We arrived at 6:00 pm. It sounds like she will receive two units, and if all goes well, she’ll go home around 1:00 am. Her first unit started at 9:00 pm and each unit takes between 1½ – 2 hours.
Her stomach and intestinal problems greatly improved after the Augmentin completed. Her oncologist suggested she eat yogurt twice a day to help with the noise and slight queasiness. Antibiotics knock the helpful bacteria in the gut for an unfortunate loop. It will take a couple of days for her system to re-balance itself.
Lucy’s leg is almost normal sized again. We will have to lotion her leg a couple of times per day to help soften the skin. That will help with the tightness she feels. Both ankles are much less swollen and loosening up. Her walking speed is increasing though she still needs the walker.
At this point, she has not started her Hexalen yet (the oral chemotherapy). I think she wants to start it tomorrow depending on how her digestive issues are doing.
The extremely warm weather we are experiencing has been very beneficial to Lucy’s gardens. The east side gardens have irises, tulips and daffodils about 3″ tall. Her blue flax is back and some of it is 6″ tall already! No signs of the sqills, snowdrops, or crocuses yet, but they are buried under several inches of leaves. The lilacs and maple trees have leaf buds on them. She also has sedum popping up. A few of the forecasts are hinting at 80°F a couple times in the five-day forecast. That will drive the frost completely out of the soil.
We hope you are enjoying decent weather where you are. Thank you for making the time to support Lucy!
Pradaxa (the pills)!
Dr. Thurmes told us that Lucy is going on Pradaxa twice per day for her clotting problems. He wanted something with a shorter half-life in case she starts getting the serious nosebleeds again. Pradaxa has approval for DVT therapy in cancer patients in Europe. FDA approval is pending, but Pradaxa can be legally prescribed for Lucy’s situation.
Lucy’s hemoglobin was at 7.2 and she received a one unit transfusion. Her IVs are disconnected. She had two long walks today while still tethered to the IV tree. Her longest walk came after untethering.
As of now, the only thing that would keep her in the hospital is a fever spike higher than 101.5°F tonight. Her pain management is fine. She started her oral antibiotic. That will be twice per day for a week starting tomorrow. The pills are very large uncoated capsules, so we will split them so she has an easier time swallowing them.
Lucy heard from Steve, Julie, and Suzy today so she told them about her imminent release. The nice thing is the pace here has slowed down.
Lucy had a very busy day with all the people in and out to check on her.
Dr. Dettis (infectious disease) was by and told her he was better than 90% certain her fevers and leg redness were solely from the clots, but he wants her to be on antibiotics for another day or two. That was reassuring for her to hear.
One of the hospital chaplains stopped by, and then Dr. Thurmes (hematologist) was by to see how she was doing. Unfortunately, her hemoglobin was at 7.1 so she received one unit of blood just before going to IR. He feels the Coumadin and Lovenox are not working and had two other anticoagulants in mind. One is Pradaxa, which is a pill. The other is a once per day injection which she couldn’t remember. We are hoping Pradaxa is a workable solution. Dr. Thurmes had a couple of areas he needed to research first.
Her TPA procedure got delayed because of a couple higher priority cases. She was originally scheduled for 8:30 and finally went down at 12:45. The procedure completed by 1:15. She no longer is on TPA and they can stop doing the neurological tests in another four hours. She should get more sleep tonight and have fewer interruptions.
She did have to have her arm IV access changed. Getting a different one in was very problematic. Her arms have really been poked. Certain drugs cannot be administered into a port, and her antibiotics are all incompatible with heparin.
Julie called tonight and like last night didn’t get much time to talk to Lucy. The arm access IV adventure was just beginning then.
Lucy got to sit on the edge of the bed for over a half hour. She even managed to stand up before getting back into bed. Tomorrow she will get out of bed and go for some short walks.
Getting the TPA catheter removed is a step towards going home. The next two steps are getting her off IV heparin and letting her leg heal a bit more. Getting the heparin level in line will probably be the most difficult given her experiences. We still don’t have a firm release date.
Keep your fingers crossed, and thank you for all the thoughts, prayers, positive energy, and good wishes!
So much for Lucy’s heparin staying in the therapeutic range. She has had two adjustments and boluses today and will have a re-test at 9:30 pm tonight. It sounds like she is close to where they want her. The tricky part is having her stay in the therapeutic range for a couple of days.
Her nosebleeds have stopped, but Dr. Thurmes is very reluctant to run a TPA catheter in her leg. The TPA would speed up getting rid of the thigh clot. Right now, she has to stay the course. Perhaps that could change the longer she goes without a nosebleed. She is dabbing saline gel in her nostrils every four hours and so far, that is working.
The two-unit transfusion helped a little, but Lucy’s hemoglobin was only at 7.9 today. She will probably need a transfusion tomorrow or Wednesday. We have not heard how her white count or platelet count was faring.
She has still been having fever spikes today. Her worst one was 102.8°F, which went down with Tylenol and cool washcloths on the forehead. There is still no indication of an infection. The fevers break within 30 minutes.
One nice thing was she used the shower today. The disposable washcloths are nice, but having some independence is nicer. She also received a birthday rose from one of the floral shops today. That was a nice present.
It’s still a “wait and see” situation. A lot depends on how fast her body starts wearing down that clot in the thigh. We have no idea how soon she will be going home. It’s frustrating, but it is what it is.
Thank you so much for caring! Your comments are like her getting a Get Well card without having to wait for mail delivery.
Lucy’s hemoglobin was at 6.0 and her platelets were at 50,000. Dr. Nashawaty had rounds this weekend and he mentioned the irony of keeping Lucy on heparin but also having to transfuse platelets. Her Alimta treatment probably caused the platelet count drop and to her low hemoglobin level.
On the plus side, her heparin is in therapeutic range. She will be in the hospital until at least tomorrow. One of the criteria for release is getting her off IV heparin. Our guess is they would also like to see any risk of infection in her leg eliminated and a noticeable improvement in her leg. It appears her leg is getting a little better. Like her last hospital stay, this will be a day-by-day event.
Today saw a steady stream of nurses and nurse’s assistants in and out of her room. Lucy said one of her arm blood draws was at 3:00 am this morning. Her port has heparin in it so certain blood tests must be done via her arm.
Lucy’s appetite is still good. I went to the cafeteria and picked up a grilled chicken sandwich for lunch. She asked to sample it and wound up eating the whole thing.
Steve and Liz came by this morning and brought cookies. Suzy was by this afternoon and left a stuffed snowy owl and a couple of magazines. Julie called to see how Lucy is doing. We also appreciated all the great notes from everyone. Lucy and I do read the comments left in the group or in the blog, and we thank everyone for their words of encouragement.
We’re hoping her heparin stays in therapeutic range tomorrow. That will put her one step closer to going home.
I found this scrub top in the gift shop. Lucy wants to see it when she is more mobile. I’m sure she will get one.
Suzy brought along a new friend for Lucy