A little over a week ago, we noticed Mom's face swelling a bit. It got worse over the past 4-5 days, so I talked with her yesterday afternoon about seeing Dr. Houston (her general physician) to be sure nothing else was going on. I called Dr. Houston's office yesterday, and he agreed that a visit would be a good idea. Mom, Pat and I went to his office at 8:30 this morning. He thought that the swelling might be due to the steroids, but since her dosage has been dropping, and her swelling has been getting worse, he wasn't sure. He also thought the swelling could be due to her extremely irregular glucose levels. He suggested an ultrasound at the hospital to rule out any clots or other issues.
By 10:30 a.m., Mom had gotten the phone call: a large clot in her inferior vena cava and renal vein. She was instructed to get to Prairie Heart Institute in Springfield immediately, report to the ER, and wait for a room. Dr. Goswami is on vacation this week, and so Mom would be assigned a fill-in cardiologist when she arrived. I talked to Mom, and we decided to call Dr. Goswami on his cell to be sure he didn't want a specific doctor assigned. He seemed quite happy that I called and said that he would take care of everything. No 8-hour ER waiting period needed; he would call and set up her admission. She would have a room waiting on her when she got to Springfield. He called Donita Schrey and Dr. Shayuk (Internal Medicine), and despite a little confusion, Mom was in her room within 20 minutes of arriving at the hospital. Again: THIS is why Mom is lucky to have Dr. Goswami in her life.
Mom will have a CT scan of her head and a CT with venous dye of her chest, abdomen, and pelvis tonight. The dye helps to see where clots are. Right now, we are waiting on her labs to come back to be sure she has high function in her kidneys (the dye is hard on her kidneys). Mom's neurologist, Dr. McGregor, is out of the country, so one of her partners, Dr. Russell (sp?), will be the 'main man' in determining where things go from here. If Mom hadn't just had a hemorrhage in her brain, the next step might be to start her on heparin (clot-busters). Dr. Russell will review the CT of Mom's head tomorrow to determine whether or not that's an option. If it is, she will start immediately. If it isn't, Mom's team of doctors will have to decide on another course of treatment. Hopefully the CT shows what is causing the swelling in her face and neck, since the IVC clot probably wouldn't cause it.
Dr. Goswami is, indeed, on vacation this week, but he is in Springfield, so he will be stopping by to see Mom tomorrow. Donita has been in twice tonight and will be back tomorrow. It is so nice to have a friend here. Dr. Mink, the oncologist at St. John's/Memorial has been in. As well as Dr. Russell. It has been a crazy evening.
Unfortunately, the craziness is leading to some miscommunication/lack of communication between staff tonight. Mom's dinner was delivered, but she had to wait over 30 minutes to eat it since they hadn't checked her glucose yet. Someone came in to take her blood for labs, but the nurse didn't know all the correct labs needed, so 10 minutes later, someone else had to come in and stick her twice more. A nurse put Mom's IV in when we got here, but now she needs a larger gauge so they will have to put a new IV in tonight (and nearly EVERY nurse has to try more than three times to get a vein).
The good news (good, I think) is that Mom will be transferred to Intermediate Care after her CT scans. That means more care than she's getting now and a private room! Mom isn't a fan of shared rooms - who is, really?
So, no real news tonight. Hopefully we will know much more in the morning. Mom needs all the prayers/good thoughts/vibes she can get, so send them up and this way.
Written/Posted by Jenn.
Wednesday, October 19, 2011
Monday, October 17, 2011
Healing
After we returned from Houston, Mom had a busy weekend at Berryville Vineyard's Harvestfest. The Claremont Rec Center made food on Saturday and Sunday for the more than 2000 people in attendance. Mom spent Saturday soaking up a little sun and visiting with friends.
Wednesday, she went to Effingham for her chemo appointment. Her platelets had fallen below 60,000, so no chemo. She did get cleared to begin taking Tarceva again, as it doesn't interfere with her blood.
Thursday, Mom had another MRI and an appointment with Dr. McGregor in Springfield. The MRI looked great. The fluid in Mom's brain is nearly gone, and the clot is being reabsorbed. Dr. McGregor was very happy, but will see Mom again in a month or so.
Mom started the last dosage drop of Dexamethasone today. She will take one pill, four times daily until Sunday. We're hoping that her severe dizziness, sugar checks, insulin shots and facial swelling will ALL go away after the steriods are stopped. She is still very weak, but has started eating more red meat, which seems to be helping.
She is having her blood checked every few days to monitor her platelets, and she will return to Effingham on Wednesday to see Dr. Dy. It seems unlikely that Mom will start chemo this week, but she's hoping that by next week, her platelets will be stable and she will be stronger.
If no results are noticed after the steroids are stopped, then Mom will see Dr. Houston to assess what may be causing all these seemingly minor issues. Dr. Houston has been fantastic, and Mom is fortunate to have him in her corner.
Please pray for Mom's renewed strength. I know she looks forward to feeling 'like herself' again soon.
Written/Posted by Jenn
Wednesday, she went to Effingham for her chemo appointment. Her platelets had fallen below 60,000, so no chemo. She did get cleared to begin taking Tarceva again, as it doesn't interfere with her blood.
Thursday, Mom had another MRI and an appointment with Dr. McGregor in Springfield. The MRI looked great. The fluid in Mom's brain is nearly gone, and the clot is being reabsorbed. Dr. McGregor was very happy, but will see Mom again in a month or so.
Mom started the last dosage drop of Dexamethasone today. She will take one pill, four times daily until Sunday. We're hoping that her severe dizziness, sugar checks, insulin shots and facial swelling will ALL go away after the steriods are stopped. She is still very weak, but has started eating more red meat, which seems to be helping.
She is having her blood checked every few days to monitor her platelets, and she will return to Effingham on Wednesday to see Dr. Dy. It seems unlikely that Mom will start chemo this week, but she's hoping that by next week, her platelets will be stable and she will be stronger.
If no results are noticed after the steroids are stopped, then Mom will see Dr. Houston to assess what may be causing all these seemingly minor issues. Dr. Houston has been fantastic, and Mom is fortunate to have him in her corner.
Please pray for Mom's renewed strength. I know she looks forward to feeling 'like herself' again soon.
Written/Posted by Jenn
Thursday, October 6, 2011
News from MD Anderson
Mom's appointment with Dr. Javle and his P.A. Jackie was today at 10 a.m. Mom's tumor is the same size as it was in June, but the brightness has decreased from 13.1 to 6.2. Brightness in color on a PET Scan indicates metabolic activity. When the brightness decreases, it means that the cells have less metabolic activity (energy) and are probably dying. There is no metastates present anywhere. :) Obviously, this is fantastic news.
Mom's white count is high (31.2), but that could be a result of the Decadron (dexamethazone) she takes for swelling/fluid in her brain. She will be on it 2.5 weeks longer, then hopefully the glucose counts, insulin, and blood pressure medicine can be stopped and her WBCs will return to normal.
Dr. Javle recommends restarting Mom's chemo as soon as possible. She will resume the regimen she was on before (Tarceva pill (every day), Xoloda pills (every day for two weeks, then one week off), Gemzar (IV once a week for two weeks, then a week off)). He would like to keep a close eye on Mom's platelets, hopefully keeping her clotting/bleeding under control better.
In terms of other treatments, Mom is not a candidate for Proton Therapy. The proximity of her tumor to her stomach and esophagus, combined with the strength of the radiation used in Proton Therapy disqualifies her. If the chemo stops working, then Dr. Javle recommends Mom undergo Intensity-Modulated Radiation Therapy at MD Anderson for six weeks. It's a more typical type of radiation that can sometimes produce results. She is also still eligible for Radioembolization, though it is more invasive and, therefore, not a preferred method of treatment.
All in all, very good news. Dr. Javle is "very happy, since it's been seven months since diagnosis and the cancer is better."
Mom, Samantha, and I are in Bush Intercontinental Airport in Houston now, awaiting our return flight to Indianapolis. Though filled with good news, trips to MD Anderson are almost always draining. We are tired and ready for our own beds! :)
Thank you for your prayers. The cab driver today commented that "lifting up prayers is the biggest, most important thing any person can do for another." You have no idea how much we appreciate them!
Written/Posted by Jenn
Mom's white count is high (31.2), but that could be a result of the Decadron (dexamethazone) she takes for swelling/fluid in her brain. She will be on it 2.5 weeks longer, then hopefully the glucose counts, insulin, and blood pressure medicine can be stopped and her WBCs will return to normal.
Dr. Javle recommends restarting Mom's chemo as soon as possible. She will resume the regimen she was on before (Tarceva pill (every day), Xoloda pills (every day for two weeks, then one week off), Gemzar (IV once a week for two weeks, then a week off)). He would like to keep a close eye on Mom's platelets, hopefully keeping her clotting/bleeding under control better.
In terms of other treatments, Mom is not a candidate for Proton Therapy. The proximity of her tumor to her stomach and esophagus, combined with the strength of the radiation used in Proton Therapy disqualifies her. If the chemo stops working, then Dr. Javle recommends Mom undergo Intensity-Modulated Radiation Therapy at MD Anderson for six weeks. It's a more typical type of radiation that can sometimes produce results. She is also still eligible for Radioembolization, though it is more invasive and, therefore, not a preferred method of treatment.
All in all, very good news. Dr. Javle is "very happy, since it's been seven months since diagnosis and the cancer is better."
Mom, Samantha, and I are in Bush Intercontinental Airport in Houston now, awaiting our return flight to Indianapolis. Though filled with good news, trips to MD Anderson are almost always draining. We are tired and ready for our own beds! :)
Thank you for your prayers. The cab driver today commented that "lifting up prayers is the biggest, most important thing any person can do for another." You have no idea how much we appreciate them!
Written/Posted by Jenn
Morning in The Garden
Written/Posted by Jenn
Wednesday, October 5, 2011
In Houston, Texas....
I had my PET scan this a.m. and all went fine. I will know the results in the morning at my appointment with Dr. Javle and his Physician's Assistant, Jackie. I look for good results or, at least, no big change.....it is more an issue with my blood clotting/not clotting which resulted in the brain bleed (which sent me to Springfield in the first place). MD Anderson doesn't really care about the brain bleed....they just want the chemo/cancer regime to get started again so we can move on with this battle of cholangiocarcinoma. I AM totally on board with that, but I also know my blood is a separate issue. But, my physician in Olney is on board to keep a closer eye on me to catch an issue before it becomes a BIG issue, so that makes me feel better!! I will keep you all posted no matter the results tomorrow...good or bad~
HUGS AND PRAYERS!!
Patty
HUGS AND PRAYERS!!
Patty
Braeda Lynn Rusk
Rylan and Amy had their baby Friday, September 30th at 8:17am. Braeda Lynn weighed 9 pounds 2 ounces and was 19 inches long. Everyone is home and doing great!
Tuesday, October 4, 2011
Houston Bound
Mom has spent the past six days resting and spending time with Amy, Rylan, and their new baby, Braeda Lynn. Getting used to 'steroid-induced diabetes' has taken some time, but Mom's sugar is slowly getting more stable. The week has been pretty quiet; Pat is in Wyoming hunting pronghorn and Mom has been fortunate to have dinner brought over a few nights.
Samantha, Mom, and I left this morning for Mom's quarterly trip to MD Anderson Cancer Center in Houston, Texas. We have had an uneventful but tiring day driving, flying, and shuttling from Olney to Indianapolis to Houston. We arrived at The Rotary House about 20 minutes ago. It is a fabulous hotel, connected to the hospital, with great restaurants and bars. Mom is getting her packet of information for the next two days and they are doing her labs now.
Mom's Pet Scan is tomorrow morning at 9 a.m. Her appointment with Dr. Javle is Thursday morning at 9:30. We will fly home around 2 on Thursday. A quick trip, hopefully filled with LOTS of good news. We will keep you posted :)
Written/Posted by Jenn
Samantha, Mom, and I left this morning for Mom's quarterly trip to MD Anderson Cancer Center in Houston, Texas. We have had an uneventful but tiring day driving, flying, and shuttling from Olney to Indianapolis to Houston. We arrived at The Rotary House about 20 minutes ago. It is a fabulous hotel, connected to the hospital, with great restaurants and bars. Mom is getting her packet of information for the next two days and they are doing her labs now.
Mom's Pet Scan is tomorrow morning at 9 a.m. Her appointment with Dr. Javle is Thursday morning at 9:30. We will fly home around 2 on Thursday. A quick trip, hopefully filled with LOTS of good news. We will keep you posted :)
Written/Posted by Jenn
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