You finally get to hear from the patient for a change!!

It seems I have been in the hospital for so many of the last posts that Jenn or Amy have done them for me. Or, I just didn't feel up to posting due to my blood clots or brain bleed.
Well.....I'm back and here goes with my first "new post in awhile".
A few weeks ago, I had to get my blood tested for how fast it clotted and the guy that was at the er who took my info/insurance info was like....OH MY GOSH....it's you. I thought you died when you had the brain bleed.....you were really bad!  I was like....well, thank you very much......do you get paid to say that to patients?  I don't remember much of my "brain bleed"...."cerebral hemmorage" or just plain talk....it is called a stroke. But when I got the bill with all the morphine charges ....I see WHY I don't remember much. I had the most wonderful neurosurgeon who Pat just found out is a niece-in-law to Rod & Sarah Kelley. She is married to Rod Kelley's brother. I know alot of people know the Kelley's from Olney and what wonderful people they are.....but she was wonderful also......her name was Margaret McGregor. She was patient and my bleed was not bad enough to have my scull capped open to relieve the pressure. She was patient and knew to wait it out. But she straight up told Pat and the girls I was one sick chick with a bleeding brain! It has taken a bit to recover from the brain bleed but I feel I am get closer every day!! That was over a month ago and I have went from not being able to get out of a car to now driving and back to work. I can get dressed without sitting down to dress my lower body....my platelets have more than doubled from then and I am also walking some up to 1 1/2 miles. This is the first winter I am not joining the gym for the winter months....;-{  For someone who exercised whether it was summer, fall, winter, or spring, I was exercising...it is kind of like an addiction I have had to give up.
I was feeling a little odd last Friday at work so I called Dr Goswami (my #1 cardiologist in Springfield) and Jenn has touched base on that in an earlier post about what all happened that day. I am here to tell you this cardiologist is the most top notch guy I have met. I could die tomorrow and all of my family would know that my whole team of Dr's including Dr. Houston did everything they could to save me.
So.....I had good bloodwork today and I feel at about 85% well again. I got chemo and all went well. I think I could go out tomorrow and catch my own turkey for Thanksgiving but then I'd have to clean it....who likes wet feathers........but there is a turkey farm close by.......  I get chemo on the 29th AND I get to see Dr. Goswami at St. Anthony's Hospital that morning. I will have my blood checked weekly now to see how fast it is clotting to stop a brain bleed BEFORE it happens. I am back on my chemo pill called Xeloda which I take for two weeks, off a week, then do it all over again. I had one round of it before my brain bleed and had no side effects....they can get ugly but we shall wait it out and see. Most commonly you get something called hand and foot syndrome where your palms and soles peel deep layers off and it gets very painful....I wear gloves to bed and cake my hands with Udder Cream or Aquafor. My feet are slathered also and I wear socks to keep the lotion from getting all over my sheets!  I am also back on a drug called Tarceva which kills new cancer cells from producing in other parts of my body and by golly for the past 6 or 7 months it has worked!
I am heading into work today and then to Greenup to take some paperwork. It will be the first time my co-workers in Greenup have seen me since the brain bleed.....so it will be nice to see them. I want to give a shout out to my momma who had a warm coconut cream pie on my counter when I got home from supper at Jon & Lisa Cummins house for Samantha & Leslie's 24th birthday on the 23rd of November. 24.........oh how things have changed so much for me through the past 24 years.
MY Get Well cards are coming in again from alot of people I don't think about even sending me a card....and I love them....whether they have a poem written inside or just an "I am praying for you" note, they are ALL appreciated and sometimes what lifts my spirits back up to fight this another day.            
One last thing. While Pat & I were at Neimergs yesterday, I received a call from Donita Polk Schrey who works at Prairie Heart in Springfield but also sees patients in Olney on a monthly basis (I think it is monthly). She called to see why I hadn't called her to let her know I was in the hospital all weekend.
She is always volunteering living quarters if the girls need somewhere to stay. I am not even a patient of Donita's but she was a year older in school at ERHS and we briefly remember/knew each other back then. She is just such a genuine person  who God sent my way to help look after me. She was actually in Olney all weekend due to an aunt dying but she STILL expected a call. She is also at the VERY top of our favorite Nurse Practioners list but more important she has shown how much of a truly genuine person she is who cares about our family when we are not even a patient.....she works with Dr. G (same building) and used to live in Olney as her parents/and mother-in-law still do.
I am truly Thankful this Thanksgiving for my husband, Pat, who is always there for whatever is thrown our way, my girls who have shown me they are older and wiser than I give them credit for and are also ALWAYS there for me. I am thankful to see my grandaughter Braeda Lynn smile and coo at me at (seven weeks old) or grandaughter McKenna Grace say Ja~Ja for the first time) which is what she calls me. I am thankful for my housekeeper Connie, who I could not live without. I am thankful for each leaf that falls and I get to see it float to the ground...I am thankful for my fireplace which I hope to be able to use very soon. I cannot wait to see that first snowflake. It is the little things that mean so much to me right now. I am SOOO thankful for Jean at my office and I would also have to mention Terri (from Weatherization and to Denny for loaning her to me) and Lauren who work there. I am thankful for my family (mother, sisters, brothers, aunts, cousins, etc.) who call or think I have to get out on the weekends to shop/eat lunch,  just take a drive, or coe over for coffee and good conversation. I do think it is what has helped build my strength back up.
I am saving the MOST important for last.
God has been with me through all of this cancer......He has spoken to me three times since I have gotten the monster tumor. He told me He will be there for me and He is right beside me. IT has taken the fear right out of me! The best thing, I have had no daily pain or even monthly pain. My lab numbers are mostly all good and even my liver numbers are normal but one. My oncologist said yesterday he talked to my Dr in Houston and they cannot believe I am stable/and that my tumor is slowly necrotic (means it is dying slowly) at level 4 cancer. I am not in the books at stage four cancer of intra-hepatic cholangiocarcenoma......God is the reason. He kept me going to the gym and in good health (well...30 pounds over weight but who's counting) and it helped ward off symptoms for the appr. 4 years I had cancer and didn't even know it. I may not be eligible for a re-section....but I am still stable....nothing has changed.  Thank you God because He truly is with me.
Will it always be peaches and roses....it's not now...but oh it could be so much worse if you know anythng about this disease. My priest asked me (before I got the word if I could have a resection or not) and this was a Saturday night at Mass. I was to find out on Monday the answer. Well.....the call came and as most of us know, I am not a candidate. I told him I would do what God guided me to do....so whether at this point I just keep tugging along fighting off clots and stopping brain bleeds BUT I am stable and feel better daily....or if I consider the clinical trial at Barnes Jewish...we shall see. The clinical trial may start as soon as January but I will also consult God first, then all my drs and make a decision from there.......One day at a time......one day at a time!!  You all have a blessed Thanksgiving and pick out something even small you are Thankful for this Thanksgiving....one of the things I will list is of course, is all of YOU! Peace be with you all~
Patty

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.

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

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