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.
The old Lovin’ Spoonful song from the mid-1960’s is very appropriate for the weather we have experienced the past ten days. Temperatures have run 25°F – 35°F above our average of 42°F. Yesterday was the earliest 80°F reading the Twin Cities has had since official records started in 1871 (but only by six days) and we were flirting with 80°F again today.
Our forsythia bush has started to bloom even before the squills, snowdrops and crocuses have poked up. The maple trees are quite messy now that they are shedding their red fuzzy flowers because the leaf buds are opening. We have already had a bluebird in the birdbath, the grass is getting green, and the lilacs have leaves forming. Our gentle March breeze isn’t gentle because we were dealing with 20 – 30 mph wind gusts today.
Lucy is still having stomach issues. She is managing with Ensure, Activia yogurt, and an occasional Immodium. The stomach noises are quieting down gradually but the noise keeps her awake at night. She still has some stomach cramping, but they are lessening.
Her legs are back to normal size and she shows no sign of clot formation. She has tolerated the Pradaxa well. Once her stomach problems abate and she starts walking more, her ankle stiffness will subside. Lucy also started her Hexalen oral chemotherapy yesterday. We’re a bit worried about the Hexalen since stomach problems are a common side effect. It’s only the second day, so it is too early to tell how well she is tolerating it.
Diane called yesterday and helped Lucy’s mood improve. She heard from Steve and Julie this morning.
For my Northern California cousins, stay warm and enjoy your snow. For our Upper Midwest readers, enjoy summer in March, and for all of you, remember Lucy and I are blessed to have you supporting her!
The Alimta is not working as well as it should and is discontinued. Her CA125 level has been slowly increasing and the PET scan showed signs of increased growth. Her blood clots and the anticoagulation factor discovered in a previous blood test are a direct result of her cancer. The hope is to find a drug or drug combination that will stop her cancer from progressing. Lucy still has chemotherapy options available.
The new drug is Hexalen, an oral chemotherapy drug. Lucy will be taking it every day for two weeks, then get two weeks off. She will need weekly blood tests because of her clotting problem and the fact her blood counts were generally low because of the previous rounds of chemo. Her next blood test is a week from today, and it can be a port draw. That will give her arms a chance to recover from all the pokes she received in the hospital.
Her hemoglobin was still at 8.1, so that was a good sign. Her white count and platelet count were in the normal range. Her legs are slowly getting less swollen, she is having less discomfort, and she has not had a fever spike since leaving the hospital.
We still don’t know if the Pradaxa is working. There is no slam-dunk blood test that will help. The drug waiting in the wings is Arixtra, the injection drug mentioned a few posts back. The challenge will be trying to figure out if she has a clot forming. Both legs are still pink and have peeling skin on them. It will be tough to spot the tell-tale erythema (rash) or streaks from a forming blood clot. As I have mentioned, Homans’ sign is wrong a lot, and Pratt’s sign is not any better. If Lucy’s leg pain starts increasing or if she starts having fever spikes, we’re going to get her in for an ultrasound.
We’re both frustrated and disappointed at this time. It’s been hard trying to find the bright spots in today’s events. The biggest bright spot we have is your compassion. Thank you for that, it helps us through these rough patches.
We were concerned Lucy would have to be held another day. She had a fever spike last night of 101.4°F, which took about an hour to break even with Tylenol. That was the last spike. This morning she took her antibiotic (Augmentin) and her Pradaxa on an empty stomach. After some mild nausea and a shot of Zofran she was fine.
Dr. Dittes came by to tell Lucy that he was confident her symptoms were clot related and not infection related. He wants her on Augmentin for 10 days and saw no reason for her to spend more time in the hospital.
Dr. Weinshel was rounding for Dr. Thurmes and he was delayed. Lucy’s hemoglobin was at 8.6, her pain was manageable, and she had no fever spikes today. He saw no reason to keep her in the hospital any longer.
The only snag came when Fairview’s pharmacy thought they would be filling the Pradaxa prescription even though it was called into our local Walgreens. That took a while to straighten out. Fairview’s pharmacy is out of network so there is a higher co-pay.
Lucy will get a couple of days of downtime. Her next oncologist appointment and Alimta treatment is Thursday. I believe she will also be due for a vitamin B12 injection.
We’re both hoping for a quiet boring week for Lucy. She will need a couple of days to decompress. For the first time in nine nights, she gets to sleep in her own bed. She won’t be awakened every two hours and won’t listen to medical equipment.
Thank you for your love, thoughts, and prayers! It helps get us through the rough spots. There may not be another post until Thursday.
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.
She still hasn’t had the giant leap towards going home. Dr. Rousey (hematologist) stopped by this morning. He and Dr. Thurmes are still digging though research studies to see if Pradaxa will be the drug of choice, with Arixtra as the runner-up. Pradaxa apparently has a shorter half-life, which is helpful in case of a complication. Lucy likes the fact that it is oral and not an injection (OK, so do I!). Neither drug will need as frequent blood testing as Coumadin requires. I think it is because both drugs manage specific coagulation factors while Coumadin takes more of a “scorched earth” approach.
The IV antibiotics are still going. Right now, she gets Vancocin (vancomycin) and ampicillin, and both are available orally. While the hematologists are researching Pradaxa, Lucy is still on IV heparin. She has not needed a blood test because she hit the therapeutic range.
Julie stopped by this afternoon and really made Lucy’s day! It was nice having nearly no interruptions while Julie was here.
Lucy took two walks today. The first was about 50 feet. Her second was close to 150 feet. She would go farther when they finally disconnect the damned IVs. Her left ankle is loosening up a little. On her second walk, she was able to get her heel on the floor while walking, at least for a few steps. There was still discomfort walking, but she was not wiped out afterwards. Like last time, her pain started decreasing when she sat down.
Dr. Thurmes will be on rounds tomorrow and said he will stop by. He’s been so good to Lucy through this ordeal. He might have the home care anticoagulant and antibiotic choices tomorrow. If so, she could be released tomorrow.