Home Again

Dr. McGregor released Mom from the hospital yesterday afternoon upon seeing that there were no significant changes on the MRI. Mom will stay on Decadron (Dexamethasone) for 26 days at home to continue decreasing the swelling/fluid in her brain. Because it is a steroid, she will be checking her blood sugar and giving herself insulin shots. She will also be on blood pressure medicine for a while (hopefully not long). Her dizziness is much improved but still present when she stands up or moves quickly.

All things considered, Mom's doing really well. I know she is happy to be home. We are all happy to be home and to have her here. Thank you again for all your prayers and good thoughts. Keep 'em coming!

Written/Posted by Jenn

Getting Released...??

Occupational therapy and physical therapy stopped in Mom's room this morning. Upon seeing that she could walk, tie her shoes, put on her pants, stack coins, etc., they both released her. Her attending physician was also here this morning and released her.

Dr. McGregor was here this afternoon and ordered a MRI for tomorrow. Pending good results, she will also release Mom this week (no promises on a specific day). Assuming the clot hasn't changed or moved, she may release Mom tomorrow night or Wednesday.

Obviously, fantastic news! She is up and around, getting sassy, smiling a lot, and ready to go home! :)  All of this is made even better by the fact that Amy will be having her baby girl late this week.

Pray that the clot is continues to be stable, that Mom is released in the next few days, and for a continued speedy recovery. Thank you so much for all your prayers; they are working!!

Written/Posted by Jenn

No News

This morning finds Mom in a new room since the last post. She had lots of visitors over the weekend, which I know she enjoyed. No real news since Friday. Hoping for a better idea of a release date after Dr. McGregor comes today. She will also have a MRI today to assess the swelling/fluid in her brain.
She's currently eating breakfast, hoping physical therapy gets here soon. We will post this evening with any new news...

Continue to pray... And please pray that Mom is released early this week, as Amy may be having Ruskita (her baby) soon! :)

Written/Posted by Jenn

Things are looking up. . .

Dr. McGregor came by mom's room at 4 p.m.

She said that she is still relatively unsure of whether the blood is from a stroke or just a brain hemorrhage.  After the CT scan yesterday, she believes that mom is improving all around. The hydrocephalus in her brain is improved drastically, the pathways are opening up even more, etc. 

Dr. McGregor is going to start weaning mom off of the decadrol and  mannitol (anti-inflammatory drugs that reduces the swelling and decrease the pressure). Hoping to have dosages on these meds down to nothing by Monday. As of now, mom is taking half the dosage from when she first got here.

The physical therapist came by today and said mom was off to a great start. They want to be sure mom can walk down the hallway and up and down stairs before she leaves.  Occupational therapy will be coming by on Monday to make sure mom can tie her shoes, get dressed, etc., by herself.

As far as we know, we are still making the trip to MD Anderson on October 4th, and Dr. McGregor said that the blood will be mostly, if not all the way gone by then.  YAY! Houston here we come!

Written/posted by Samantha

Long Road Ahead

Leslie brought McKenna up to see Mom today. This is their 'lovies' before bed.

Dr. Goswami came in to see Mom this morning before he left for the weekend. I know he came by to reiterate “no filters”, but I think he also comes to say hi and see Mom. Saying we’re ‘huge fans’ doesn’t even come close. At one point, Mom was asking what happens if she gets a clot somewhere, since she’s off the blood-thinners. His response? “There’s nowhere in the book, that you show up. Cases like yours don’t happen often. We just have to think about it and do what makes the most sense.”

He asked Mom what would happen if we go to Houston, and the tumor has shrank to their magic 30% reduction. She told him that they would seriously consider resection (cutting it out), or Mom may try to get on the transplant list in St. Louis. His reply then? “You go to Houston, bring back great news, and when you see me on October 26^th, be smiling and hopeful.” Do you see why we’re fans? J

Anyway, Dr. McGregor came in around 1:30 p.m. She sent orders for Mom to get a CT scan of her chest, abdomen, and pelvis to rule out any cancer metastases. If she can rule out that the cancer has spread somewhere else, then she can be certain that the cause of the clot in Mom’s brain was her hyper-coagulable blood.  

The clot volume is about the same as it was on Monday. The fluid-fill pathways in Mom’s brain have opened more, though there is still a lot of fluid and swelling in her brain. She will start physical therapy tomorrow to get moving, and hopefully, decrease the volume of the fluid and clot.

Clinically, Mom looks 100% better. She looks better, feels better, talks better. She’s even remembering much more than yesterday morning. However, as Dr. McGregor pointed out, “the photos show she’s still a pretty sick chick.” McGregor said, Mom’s “clearly far from being out of the woods.”

When Mom asked Dr. McGregor if she had an idea of how long Mom would be in the hospital, McGregor said she wasn’t even thinking about it. She hopes that Mom will be out by the time we are scheduled to go to Houston (October 4-6).

So please, continue to pray. Mom has a long road ahead of her, both in the hospital and out.

Written/Posted by Jenn

P.S. Connie West (who works with Mom) has knitted Mom over 15 hats. She also made McKenna the hat below, which was a HUGE hit with the nursing staff in the SICU.

Dr. McGregor's News

Dr. McGregor came by the room around 12:40 p.m.

From the MRV last night, both she and the neuro-radiologist agree that Mom probably suffered from a veinous stroke. She will have a CT Scan today with a little contrast to look at the veinous phase more thoroughly. The photos last night show that the swelling in her brain has improved a lot.

Dr. McGregor is "leaning toward not" in terms of the spot being cancerous. Mom's clotting issue is probably the cause of the stroke. The clotting issue is caused by her cancer or genetics. At this point, a stroke is the best news we could hope for. No radiation, no cancer so we will ride it out.  

After the CT Scan, she will be moved out of her room to intermediate care. We have no indication of how long Mom will be here or what will happen tomorrow.

The only changes we've seen so far are that Mom's really dizzy and has little short-term memory. The dizziness will probably subside after a few weeks. When I asked Dr. McGregor about Mom's memory improving, she replied "probably not". Obviously, this is upsetting to Mom, but as Dr. McGregor said, the more she stresses out about it, the longer it will take to potentially get it back.

Mom said "I'll take some memory loss over brain cancer any day".

That is all for today. Spirits are high and Mom's doing really well. God is good.

Continue your prayers, please and thank you :)

Written/Posted by Jennifer

A Morning Visit

Samantha, Leslie and I left the hotel early to get to the hospital, hoping not to miss Dr. McGregor's morning report. We arrived at the same time as Pat (who stayed with a friend in Springfield last night) to find Mom's SICU on lock-down. A gun-shot wound patient was placed in her Unit last night, and apparently, there is some concern re: gang activity and a second attack. Because of the lock-down, visitors are allowed only to enter SICU every even hour, on the hour.

After some waiting for security, we did make it into Mom's room at 8 a.m. She's pretty dizzy, but feeling well, and in a good mood. Eating an omelet, fruit, and yogurt for breakfast.

Donita Schrey (from Olney and a NP at Prarie Heart) visited mom yesterday and told Dr. Goswami that Mom was here. Dr. Goswami walked up to the SICU while we were waiting to get in. He is Mom's cardiologist from Prairie Heart Institute when she was here in June. It goes without saying, we were all very excited to see him. He had read Mom's chart today and wanted to make sure we didn't let anyone put a filter in her stomach (which was discussed yesterday with the oncologist). He gave us his cell phone number in case we had any questions or problems.

I'm not sure how Mom got so lucky as to be randomly assigned to Dr. Goswami when she came to Springfield in June. Maybe all the cardiologists at Prarie Heart are as great as Dr. Goswami. Either way, we are lucky to have met such a caring, genuine, and professional person. We continue to be impressed.

No real, new information. We are still waiting for Dr. McGregor to come in and discuss the MRV from last night. Hopefully she will have a plan on where we go from here. I will try to post when we know more.

Written/Posted by Jennifer

A Precarious Waiting Game

Wednesday began a series of long days for Mom, as her headache began then. By Friday, she called Dr. Dy (her oncologist) to see if it could be a side-effect of her chemo regimen. He told her that because her headache was so sharp, he didn’t think it was associated with her cancer; call her general practitioner. She called Dr. Houston, who was out of town, so she scheduled an appointment for Saturday morning with a nurse practitioner in town.

By Saturday morning her headache was worse. Mom went to her appointment where the NP told her that it was “probably your sinuses”, gave Mom antibiotics, and sent her home. By Sunday, she was in too much pain to move and could barely talk. Monday morning, Pat and Jenn took her to the Emergency Department at RMH in Olney. Dr. Paulsha was the ER doc on call. He was fabulous. They immediately started a morphine drip to ease Mom’s pain, and after she was feeling a bit better, she was taken down for a MRI.

About ten minutes later, Dr. Paulsha came in while mom was sleeping and asked to talk to Pat and I. His first words were, “You should know: it’s bad.” He read the report which basically said that mom has a 1” x 1” mass in the right cerebellum that had hemorrhaged and was bleeding in a 2” x 2” area. He asked us which neurologist we would like to life-flight her to. We have had no experience with neurologists. Dr. Paulsha said there were reputable neurologists in St. Louis, Louisville, Indianapolis, and Springfield.

 We chose Springfield because of the fantastic experience Mom had at Prairie Heart Institute in June.  The weather was bad, so she was taken to St. John’s by ambulance. Lisa Stoltz-Syfert (Mom’s sister) left Effingham when the ambulance left Olney so she was waiting in St. John’s ER when Mom got there. Leslie, Samantha, and Jenn went home to pack a bag, while Pat went home to meet Bill Weiler for the drive up to Springfield. Amy (being 38 weeks pregnant) decided to stay home.

St. John’s Emergency Department is a Trauma 1 ER right now, so it was overwhelming and hectic. Mom waited 45 minutes for a room, and, even then, we were watching gun-shot wounds and craziness around us. Dr. Maragaret McGregor (neurologist) was called in and read Mom’s CT Scan from RMH. She showed the scan photos to us, pointing out the mass and subsequent bleeding. She decided to transfer mom to Memorial Hospital, because St. John’s didn’t have any ICU beds available, and, as she said, “the quality of care at St. John’s, when it’s this crazy, is not something I’m comfortable leaving you in. Your condition is too serious.”

While they were waiting to transfer Mom, the nurse started her on Mannitol - a drug to decrease the swelling and fluid in her brain. She had a slight reaction to the drug, but a new IV and a filter later, and she was back on track. Unfortunately, St. John’s was so crazy that her pain medication was less of a priority, so she was in quite a bit of pain until they got her to Memorial.

Mom’s room at Memorial is in Surgical Intensive Care. They performed at MRI around 11 p.m. Dr. McGregor visited this morning to discuss the results. She does not think it is metastases of Mom’s cholangiocarcincoma, though it is hard to tell. It may be a blood vessel that burst and then bled. McGregor made sure to emphasize last night and this morning how serious Mom’s situation is. There aren’t many medical scenarios more serious than hemorrhage in her brain. At this point, Mom is getting Mannitol and another anti-inflammatory drug to continue decreasing the pressure in her brain. If it is determined that the suspicious spot in her brain is not cancerous, the course of treatment will be very different than if it is determined that it is cancerous.  

Even if the doctors decide that the spot is not cancerous, the risk for Mom is still far from over. The possibility of brain surgery has not been eliminated, though at this point, we’re hoping that the medication and her body will reabsorb the clot and the residual blood. If the spot continues to raise suspicion, Mom may undergo ten rounds of radiation to (hopefully) eliminate any cancer cells. There have been many other hiccups since Friday, but this is the notable stuff.

Much is unknown right now. Mom will have an MRV to assess the flow in her veins later today. Hopefully, a course of treatment will be better known tomorrow. For now, it’s a waiting game.

Please pray that the swelling decreases and the blood and clot/mass are absorbed.  Pray for the doctors to use their knowledge to discern what course of treatment to use. Pray for the nurses to have patience with our highly involved and worried family. And pray for those who couldn’t come up to Springfield that they will be comforted being so far away in such a worried time.

Thank you for all the prayers you’ve already sent. Mom needs them.

Thank you, Bill Weiler, for driving up with Pat last night, and thank you, Lisa for being here when Mom got here. Mom is blessed with great friends and family.

Written/posted by Jennifer, Samantha, & Leslie in Springfield                                                                                                                      

Still calm...sort of...

Well.....Monday evening was kind of scary as I had the scoots 3 times in 35 minutes, took two Immodiums, and it stopped. Whew!  My belly was all achy the next day and I really thought I'd have the scoots last night. Nope....all was good. I was tired and in bed by 7:30 but I must have needed the sleep as I was off to la-la land in no time. I woke up at 3 to go to the bathroom, then went back to bed. When I awoke at 5:20, I had the most terrible headache ever. I took 1000mg of Ibuprophen and it dulled it but it is still there. Jenn asked if I have been drinking enough water.....I think so.....
So....today I am drinking alot of water although the headache is still dull in my head. It hurts to sneeze. If it is not gone by Friday am, I will call the dr.
Thursday is my last day on the chemo pills (I thought it would be Wednesday but I calculated wrong).....so then I will wait to see if I have any side effects from it. Pat thinks maybe the last bout of scoots was a viral thing that was going around next door at the sr center.
I go to Houston in less than a month and have some anxiety about going this time. Some cholangio patients call it scanxiety. God has always been there beside me even when there were bumps in the road.....so no matter what the results, we will tackle it together! Cancer really does suck and I wouldn't wish it on my worst enemy.........
I'll post later in the week after going off the chemo pills to update my side effects.....if I even have any....pray for NO side effects please!!
HUGS & PRAYERS!
Patty

Could be a few more days....

Chemo was short and sweet....labwork looked good. Platelets are up but white count is down but nothing to stop the chemo over. I gained .2 lbs.
Dr. Dy says I will not see the screaming scoots until the week that I am off the chemo pills....that will be Thursday of next week (the 15th). I started using a nasty mouth swish and swallow med for the mouth sore that is starting in the back of my throat (they can travel clear down my esophagus so that is why I swallow it). The pharmacist says customers say it is the miracle potion for mouth sores. He stated it was kind of expensive....I said....well...HOW MUCH?  He stated it was $11. I said Bryson (pharmacists name)...I have Lovenox shots that are $4000, Tarceva pill I take once a day that is $4000, the new chemo pill is $2500 for a two week supply, chemo drugs in Effingham is $5700......and you think $11 is ALOT?  He just laughed at me. I paid $76 yesterday for 4 drugs. If it wasn't for our insurance plans.....I'd just have to not get treatments and probably be close to dead by now.
So......IF I do not get the scoots next week, the dr might consider upping the dosage. He started me on somewhat of a smaller dose due to the Tarceva I take. My Dr at MD Anderson has never had a patient on these three meds at the same time nor has Dr. Dy so they do not know what to expect totally. I am a guinea pig.... sort of.  
It is less than a month that I will travel to Houston and we will see good results of all these drugs being pushed through my system!
Alot of times when I am praying at night...or in the morning, I get so busy praying for everyone else...I forget to ask God to shrink my tumor for me. So I have to pray again and say BTW...if it is in your plan, can you heal my tumor or atleast shrink it....Or even just keep it stable (as it has been since I found out I had cancer). 
Short and sweet....I am doing great and working everyday until I cannot. Sam and I walked this morning.....

HUGS & PRAYERS!
Patty

Too early for side effects......

Well....it has been 6 days since I started to chemo pills...so far I have peeling hands in places but nothing major. Wearing gloves and socks to bed  have helped alot! I have had slight nausea but have only taken one nausea pill throughout this week....so I'll take that!  The dreaded screaming scoots should start anytime between the next few days or it could make me wait in anticipation of how bad it will be and not happen for 4-6 weeks....  If you think it seems odd I call it the screaming scoots......you envision going to the restroom up to 40-60 times (worst case scenario) a day and you will understand. IF it is going to happen, I wish it woud just get on with it so I know how to plan my day at work. There is a chance it will NOT happen but boy did the dr mention the scoots over and over. Mouth sores will be another concern he will check for every week. Never had the but I guess they are unpleasant enough that you don't want to eat....never NOT wanted to eat but hope this also stays away from me!!
We had a BIG program at work start last week although it really never got CRAZY until today. Another reason I just wish I would know what to expect as far as side effects....tick tock....it is a waiting game. Anyone who knows me knows I a NOT a patient person in any way shape or form.
I had the most superiffic fabuwonderful weekend with my four girls over Labor Day Weekend. We went to Brown County Indiana and just spent some good quality time together that was LONG overdue. We promised to do it next year only in October when the leaves are changing. We went this year during Labor Day due to Amy's due date being Oct. 8.
So....tomorrow is chemo day again and I am interested to see what the dr says about my labwork....with being on the new pill.....and to see if he has anymore insight to the side effects and when the ticking time bomb is going to go off. Maybe it will be like the Tarceva (which was suppose to cause severe dairhea ) and I never got that!
I thank the good Lord for keeping us safe over the weekend, for keeping my health so good that I was able to enjoy the weekend, and for the beautiful scenery He created in Nashville Indiana. I also thank Him for my daughters that are always there for me at a moments notice! I love you girls to pieces!!
I ask God to guide and direct so many people struggling financially, with family problems, health problems, and everyday life problems.
Hugs & Prayers!
Patty