Thursday, October 27, 2011

A Visit with Goswami

Mom had an appointment today at 12:15 with Dr. Goswami in Effingham for a checkup. Mom developed a rash on about Friday and she started running a slight temperature on Wednesday. She took some Tylenol, which reduced her temperature some. She also has had tachycardia (fast heart beat).

Dr. Goswami said he is unsure why she had a rash on her upper legs and running a temperature, so he ordered for blood work to check her white blood cell count. Blood work came back fine, and her platelets are now at 115,000. He said that a fever can cause tachycardia. Dr. Goswami told her to drink plenty of water, and monitor her pulse and temperature over the weekend, and then call him on Monday to let him know what her temperature and pulse rate is at that point.

Mom asked Dr. Goswami why she was still so weak, and he said maybe it was because she just came off of the steroids, which is good news.

Mom's been out walking and having coffee on the porch all week, feeling much better. Keep the prayers coming!

Written/posted by Samantha

Monday, October 24, 2011

Bound for Home

Donita stopped by Mom's room this morning. She is a constant breath of fresh air, and we are grateful to have her knowledge and friendship in our lives.

Dr. Goswami is back from vacation today and stopped by a bit ago. Mom's inferior vena cava, from the bottom of her xiphoid process (that little hangy-down between your ribs) to the top of her pelvis is 100% accluded. No blood or fluid is moving anywhere. Dr. Goswami says that the clot formed so slowly that Mom's body formed new/enlarged old vessels to return the blood and fluid, which is why she didn't have any edema in her legs. It is amazing what the human body can do - it sensed it's inability to return blood to the heart and formed new ways to get it there.

At this point, the benefits of doing surgery and removing the clots do not outweigh the risks. Many people live their entire lives with clots in their lower body (though most of them are in their legs). Mom will continue to give herself Lovenox (blood thinner) shots twice a day, but at a lower dose than before. She will go to Effingham or Olney for periodic blood tests (Anti-Xa) to monitor clotting factor ten. Hopefully, this will allow the doctors to keep her blood in a safe range of not too thin and not too thick.

She can resume her chemo whenever she's ready. If it starts causing more problems with her platelets (which are up to 108,000 today :), then she and Dr. Goswami will reassess.

Mom is headed home today. They should have discharge orders finished very soon. I know she is happy to go home, but still apprehensive. She has a list of symptoms to watch for that may indicate clotting/bleeding, so hopefully that will help catch these episodes quicker.

Thank you again for your prayers, thoughts, and good vibes. Please continue them as Mom regains her strength and sense of normalcy  in her life. We are so thankful for Dr. Goswami. His compassion and genuine care for Mom give her new hope each time she sees him.

Written/Posted by Jenn.

Sunday, October 23, 2011

Beautiful Day in the Neighborhood

Mom is doing well today. Her platelets are up to 89,000 and her blood sugar seems to be holding. It's still higher than normal, but that's expected. Her last dose of Dexamethasone will be tomorrow morning at 6:30, so we expect her glucose levels to continue improving.

She had a tiny ping of pain near her left temple yesterday morning, and a few more this morning. Dr. Shayuk felt a CT scan of her head was needed. We haven't officially heard the results from a doctor, but since no one came in to tell us, we finally asked a nurse. The results are negative, indicating no clotting or bleeding in her brain.

Dr. Goswami will be in tomorrow, and there's a good chance Mom will be going home soon. It will take some time for the clots in her abdomen/pelvis to be reabsorbed, but, at this point, the hospital isn't doing anything that she can't do at home. Mom is understandably apprehensive about going home. We are going to discuss a plan for managing her chronic thrombocytopenia (low platelet count) with Dr. Goswami in an effort to avoid these hospital stays.

Mom has been up and walking the halls since yesterday afternoon. Today, we walked outside and enjoyed the fresh air and warm temperatures for awhile. It was a beautiful day in Springfield.

Continue to pray for Mom and her team of doctors and nurses. We are so thankful for your prayers and good thoughts. Obviously, they are working. :)

Written/Posted by Jenn.

Saturday, October 22, 2011

Up & Walking!

Dr. Mishkal and Dr. Shayuk were in yesterday and today. Mom's platelets fell to 74,000 today. Her sugar is getting SO much better. No insulin was needed this morning!

Dr. Goswami ordered an antibody test to see if Mom had heparin induced thromocytopenia. In an effort to not sound extremely nerdy, I will just say that Mom doesn't have the antibody so it can be assumed that her low platelets and brain bleed were not directly attributed to the Lovenox shots. Dr. Mishkal discontinued the Bivalirudin about 30 minutes ago. Starting today, Mom will take low-dose Lovenox shots, twice a day.

It is likely that the swelling in her face is Cushing's Syndrome, which is caused by steroids. She has the characteristic 'moon-face' and a 'buffalo hump' on the back of her neck. All of this should subside in three to four weeks, since Mom's last Dexamethazone pills are tomorrow.

Bill and Deb Weiler drove up to see Mom yesterday. Mimi and Sarah drove up this morning, and Amy and Rylan will be here this afternoon. Though sometimtes tiring, the company of people definitely provides a break from the monotony of the hospital.

Mom's spirits and mood, in general, are much improved, even in the last 24 hours. She's still quite weak, but she and I walked around the neuro/cardiac wing twice this morning (about a quarter mile). All is going well. We are looking forward to Monday when Dr. Goswami gets back.

Written/Posted by Jenn.

Friday, October 21, 2011

A Quiet Morning

It's been a quiet, yet productive, morning in Springfield. Mom bathed and washed her hair. Dr. Shayuk (internal medicine) was in, as was Dr. Mink (oncology). The report from Mom's Echo yesterday showed no blood clots in her heart. Her platelets jumped from 66,000 yesterday to 79,000 this morning. :) And her glucose was lower than usual before breakfast.

The PTT test this morning had favorable results, so her Bivalirudin has been increased. They will do another PTT in two hours. Dr. Mishkal will be Dr. Goswami's temporary replacement today. He should be in soon.

I would like to reiterate that Mom's cancer is stable and has been responding well to treatment. The issues she is dealing with now will probably have to be dealt with indefinitely. Because of her cholangiocarcinoma, her clotting factors are unstable. Until the cancer is gone, she will have to battle clotting/thinning of her blood. :(

Thank you for your prayers, thoughts, and good vibes. Mom needs them and truly appreciates them.
Please continue to pray, think good thoughts, and send good vibes.

Written/Posted by Jenn.

Thursday, October 20, 2011

Decision Time

Dr. Goswami and Donita Schrey were in before noon to see Mom. CT scans from yesterday showed that the previous clot and hemorrhage in her brain are stable. Dr. Russell, her neurologist, cleared Dr. Goswami to do whatever he thought was needed. The scans also showed the large IVC clot in her abdomen and pelvis and a small clot in her lung. The clot in her lung was, most likely, a pulmonary embolism.  Dr. Goswami ordered an echocardiogram today to be sure no clots have made it to her heart or arterial system. We do not have those results yet.  Her platelets dropped from 68,000 yesterday to 66,000 today. Her sugar seems to be improving (which Samantha attributes to the unavailability of Milano cookies in the hospital :).

Dr. Goswami thought a long while today about his plan for Mom. Ultimately, he decided to start an IV drip of Bivalirudin (Andgiomax). It is a direct thrombin inhibitor, whereas heparin (what he used last time) is an indirect thrombin inhibitor. Bivalirudin should not affect her platelets as the heparin did. The obvious risk is that thinning her blood could cause another hemorrhage in her brain. It could also cause more pulmonary embolisms.

They started the Bivalirudin about an hour ago. Dr. Goswami has ordered that Mom have a PTT in four hours to check her blood's ability to clot. They will call him with results after the test tonight, and he will adjust the dosage of Bivalirudin appropriately. Donita, the nurses, and Dr. Russell will keep a close eye on Mom. Hopefully if her brain does start bleeding, they will catch it very early. At this point, the risk of hemorrhage nearly equals the risk of the clots; benefits of one mean risks of another. Six of one; half dozen of another.

Please pray for Mom's continued safety and recovery. Pray that her entire team of doctors and nurses are cognizant and diligent over the course of the coming days. She needs everyone to be on their 'A-game'.

Most notes taken by Samantha.
Written/Posted by Jenn.

Wednesday, October 19, 2011

Back to Prairie Heart

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.

Monday, October 17, 2011


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

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

Morning in The Garden

We had breakfast at The Rotary House and then enjoyed some time in the garden. We're in the waiting room now; Mom's appointment with Dr. Javle is at 10 a.m. Please pray for good news.

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 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~

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