Lucy was nervous about coming home. In the hospital, you can press a button and have someone there to help. At home, she has me. The people in the hospital obviously have had many hundred hours more patient care training care than I have had. However, her hospice care case manager met with us on Friday before she got discharged and covered everything very thoroughly. One of the hospice nurses met us at the house with her medications, gave me some charting forms, and walked me though each of the drugs.
Diane and my parents were with us at the hospital on Friday. Once we had a firm time set up for the equipment delivery, my parents went to our house to let the delivery people in. Lucy’s siblings came over to visit after she got home.
Today was a very busy day for Lucy. A hospice nurse, Ann, came by to check on Lucy. Ann’s father is in hospice battling gastroblastoma so Ann is aware of the hiccup problem Lucy is having. She also had some suggestions for Lucy and had a couple more prescriptions sent via courier to our house.
Lucy is getting a bathing and massage service twice per week. After Lindsay came by today, Lucy wants to increase it to three times per week. It was so nice for Lucy to get pampered for 45 minutes and she was beaming afterwards.
Lucy’s siblings and her dad visited her this afternoon. We had a very nice dinner together. Lucy had some spaghetti and some chocolate cake. We celebrated Steve’s birthday a couple of days early. Diane stopped by earlier in the afternoon for a bit. It was nice to help Diane celebrate her birthday today.
Lucy has not needed oxygen today. She wanted it on a very low setting tonight. She is still having issues with hiccups, so her Thorazine dose got adjusted upwards slightly. That is working. She has not had much abdominal pain today except for the hiccups.
Lucy is still really tired. Her throat is a little sore from being on oxygen in the hospital. She has been using Halls Breezers to help with that. She also has some Popsicles and Jell-O to help soothe her throat.
Thank you so much for caring for us! I hope these blog posts have helped show everyone what an amazing woman I married. She is the true embodiment of a life worth living. Her strength, courage, and dignity are an inspiration. My hope is when it is my time to transcend this existence that I will follow Lucy’s example.
Her home hospice care is getting set up today. She will be going home at 3:00 this afternoon. Lucy is tolerating her oral medications well. She slept about six hours last night. Her hospice nurse will meet us at home at 3:30.
Thank you for your caring during this difficult time.
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 went to Fairview Southdale by ambulance at 3:30 pm CDT. She is suffering from septic shock and the prognosis is not good. The next 24 hours will be touch and go.
Please keep her in your prayers. Her battle may be ending.
If you were to talk to anyone enduring a chronic disease, or to their caregiver, you will hear how valuable the small victories are. There are no Pyrrhic victories because winning means they are still here to fight.
Saturday was the toughest day Lucy has had since her surgery almost two years ago. She started having really painful stomach issues before going to bed Friday night. Several rounds of nausea later she started feeling less miserable. It’s a tough victory, but a victory nonetheless.
Lucy’s had two nights in a row that she has not had to get up. The Ativan seems to have helped her stomach a bit. One thing that has also helped is staggering her Pradaxa and Hexalen in the morning and evenings. Both drugs use quick dissolving capsules. Quick dissolving capsules are acidic and can cause stomach irritation. We’ll take this victory, too.
Her menu has expanded a bit. That’s a victory because Ensure and Activia get boring after a couple of weeks. We’re being careful with introducing foods that are more solid. She is finally able to take her SlowFe, which should help her anemia problem. To help with her stomach gurgling, we found that simethicone gel caps that work better than the Zantac.
Lucy still has very little energy. Her transfusion didn’t seem to help much with her energy level. This might be a cumulative effect of the Hexalen. She is as wiped out today as she was a couple of days after her Taxol round.
Lucy’s coworker Cathy stopped by tonight and dropped off a fun gift basket. Her coworkers have been so supportive and generous. Julie called tonight and helped cheer Lucy up some more.
It’s been a long month with the setbacks and slow recovery. She hasn’t been able to get out much. During our warm spell, she managed to get into the sun porch a couple of times. Today was actually below normal for temperature, with some light rain this morning and several hours of strong wind this afternoon. The forecast for tomorrow is warm, sunny, and windy. That might help with her energy level.
Your love and support help Lucy immensely! Thank you so much!
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.
Chi Coltrane could have sung about tonight. The Twin Cities set another record high today, the eighth in the past ten days. Late this afternoon a band of thunderstorms whipped through and we received some much-needed rain.
Lucy seems to have made a little progress today. She is still having stomach problems and is gamely drinking Ensure to keep from losing any more weight. Her stomach problems seem worse for a few hours after going to bed. She will have some tests performed tomorrow to see what might be the cause. We know it’s not a mechanical ileus (bowel obstruction). She’s had two so far, and they’re extremely unpleasant.
She has completed day three of her Hexalen treatment. Eleven more days, then she gets a fourteen-day break before the next cycle. Lather, rinse, and repeat.
Tomorrow will also be a bit challenging for me. I have a 2½-hour presentation tomorrow afternoon. Lucy can move around the house OK, but if Minnesota Oncology wants her in for more testing or they need to send her to Fairview for some reason, she’ll need me to drive.
Thank you for your time, and keep Lucy in your thoughts. Enjoy the first day of spring (Northern Hemisphere) or fall (Southern Hemisphere) tomorrow!