The results from the MRI/MRA was no new bleeds.......my visit with Dr. Goswami was great and he is changing my blood check to twice a month instead of weekly. Right now it is staying stable......
I have no chemo this week but I still feel tired and went to bed by 7 last night. The tiredness is just something I have to accept as it is a side effect of alot of the meds I take....not just the chemo drugs. I do not have any standing appointments with Dr. Goswami......I just wait on a phone call if my blood goes whacko on me and I need to change my dosage.
At about 3:30 on Monday, I had a piece of cranberry pie than Jenn had made for Christmas and about 2 hours later I was covered from the waist up with hives/red splotches. Pat got two Benedryl for me and within an hour or so, they were gone. The pie is the only thing out of the ordinary that I can think of that would have caused the reaction.
The highlights since my last post:
1. Christmas Mass at 6 p.m. Father Jerry's Homily was SO good I had tears in my eyes at the end.
2. Of course, all the good food!!
3. Watching my grandchildren and appreciating each and every minute I got to enjoy them.
4. Enjoying time with friends and family.
5. Not eating ANY hospital food as I was healthy enough to stay out of the hospital!
6. Having four days off in a row!
7. I received WAY too many gifts from family but it would be rude to decline receiving them, right? ;~)
8. I spent the majority of time just sitting upstairs looking outside at the many birds, squirrels, and chipmunks. I never appreciated them until I got the big C diagnosis.
So as this years comes to a close, I thank God for blessing me with my second grandchild, four of the best daughters who are there when I need them-day or night, a husband who is there to help cook, rub lotion where I can't reach, go to the store all the time and for just being a sounding block for me. I thank God for Father Jerry who has been an inspiration to me with his homilies......sometimes I think he is speaking to JUST ME....and I know he really isn't. I thank God for my mom and sisters who continually check on me or "get me out" to help build my strength.
No matter what happens in 2012, I know I will still have the support of my friends and family. But most importantly, I will keep the faith. I will keep leaning on, trusting, praying to, asking for strength, building on my faith, and just knowing that God has a plan for me.
God Bless and Happy 2012~
Hugs & Prayers;
Patty
Showing posts with label Goswami. Show all posts
Showing posts with label Goswami. Show all posts
Tuesday, December 27, 2011
Wednesday, December 21, 2011
2nd round of chemotherapy
Yesterday was a fun filled day at the Dr's office and St. Anthony's Hospital. I had a 10:30 appt for blood work before seeing the Dr at 11......I saw the Dr at 12:40.....then chemo was stat after I told him I had an MRI/MRA at 3:15 and 4:00. My blood work is still good. Some numbers were down a bit which is why I have felt tired but the Dr still thinks they are great. After the MRA/MRI, I asked the tech if I could see the calcifications they found the week before on a ct scan. They are so very small she said they are not anything to worry about at this stage. Alot of people get them. I have been getting the light headaches like I had with the cerebral hemorrhage and I was a little concerned for a new bleed. The tech said you cannot even see where the last bleed was.....she had to call and get the last scan showing the bleed to compare. She really wasn't suppose to tell me all of this but the radiologist will call Dr. Houston with the official results.. So....if I am not getting a brain bleed, the only thing I can figure is it is the Xeloda I am on. That is a side effect but it scares me to death because usually a second hemorrhage is more severe and could lead to death or severe disability.
Last time I had the "brain bleed" I made Pat help me with a shower before I would go to the ER in Olney.......I told him this time to kick my rear to the car if he has to....no shower! I can tell he is watching me with caution for any sign of a bleed by my actions.....just to catch it quick.....he thinks I don't notice....I do!
I go see Dr. Goswami tomorrow in Effingham. Just a checkup and also probably to discuss the Anti XA test that decides how much of a Lovenox shot I give myself morning and night to keep my blood from being too thick OR too thin. IF we would have did this in the beginning, I think we would have saved some hospital stays....he is not a cancer Dr but a cardiologist. So I am not really blaming him only thanking him for thinking we needed to start doing it!
I have sores in my mouth from the Xeloda but I have a swish and swallow mouthwash that tastes terrible and numbs your whole mouth....I am suppose to use it four times a day.....I try but am lucky to get it done 2-3 X day.
I have not wrapped any presents this year.....Samantha took a couple to work to wrap for me.... I have spent less on Christmas this year than EVER before. So....if you didn't get a gift from me, it went to my church as a donation....or to the senior center where I donated some money.
As the Christmas Season is upon us, there are so many things that come to mind to me this year.....but here is a quote I wanted to share.
My soul chooses to glorify the Lord, and my spirit rejoices in God my Savior, for He is always mindful of me and my situation.... The Mighty One has done great things for me....holy in His name. His mercy extends to all those who fear Him, from past generations, to me, and to those to come.
He has performed mighty deeds even for me....He continues to feed my hungry soul with good things. He has helped me, His Servant; He remains merciful to me even as He promised. Therefore today and all through this coming season of holy days, I stand quiet before Him, I STAND STILL; I KNOW THAT HE IS GOD!
I will post after seeing the Dr tomorrow and the official results from the MRI/MRA.
Happy Holidays!
Patty~~
Last time I had the "brain bleed" I made Pat help me with a shower before I would go to the ER in Olney.......I told him this time to kick my rear to the car if he has to....no shower! I can tell he is watching me with caution for any sign of a bleed by my actions.....just to catch it quick.....he thinks I don't notice....I do!
I go see Dr. Goswami tomorrow in Effingham. Just a checkup and also probably to discuss the Anti XA test that decides how much of a Lovenox shot I give myself morning and night to keep my blood from being too thick OR too thin. IF we would have did this in the beginning, I think we would have saved some hospital stays....he is not a cancer Dr but a cardiologist. So I am not really blaming him only thanking him for thinking we needed to start doing it!
I have sores in my mouth from the Xeloda but I have a swish and swallow mouthwash that tastes terrible and numbs your whole mouth....I am suppose to use it four times a day.....I try but am lucky to get it done 2-3 X day.
I have not wrapped any presents this year.....Samantha took a couple to work to wrap for me.... I have spent less on Christmas this year than EVER before. So....if you didn't get a gift from me, it went to my church as a donation....or to the senior center where I donated some money.
As the Christmas Season is upon us, there are so many things that come to mind to me this year.....but here is a quote I wanted to share.
My soul chooses to glorify the Lord, and my spirit rejoices in God my Savior, for He is always mindful of me and my situation.... The Mighty One has done great things for me....holy in His name. His mercy extends to all those who fear Him, from past generations, to me, and to those to come.
He has performed mighty deeds even for me....He continues to feed my hungry soul with good things. He has helped me, His Servant; He remains merciful to me even as He promised. Therefore today and all through this coming season of holy days, I stand quiet before Him, I STAND STILL; I KNOW THAT HE IS GOD!
I will post after seeing the Dr tomorrow and the official results from the MRI/MRA.
Happy Holidays!
Patty~~
Wednesday, December 14, 2011
Chemo days......
Yesterday was chemo day. Labwork was at 10:45 and my appoinment to see the dr was at 11:15. I was finally called at 1 p.m into a patient room. My labwork looks excellent with my platelets climbing from 114,000 last time to like 247,000 yesterday. My white count is good at 7.2......when you see clients daily like we do in our office, it is good to have an "in range" white count. Especially when the two people I work with are sick and had to go to the dr. Not as good of luck getting my IV in yesterday as it took three different spots and two different people to get it into a "good" vein. My mom actually had to leave the room as they just kept "poking" the needle inside my skin.....doesn't bother me for about 30 seconds then I tell them to give it up and go elsewhere.
I was really tired the week I was OFF chemo and couldn't figure out why until I was talking with Dr.Dy and he stated I should be taking the B-6 even when I am off the chemo....it boosts my energy and I was about out of gas to run on.
SO.....I am taking two every morning and two every night like prescribed so hopefully I will atleast feel like I am running at half a tank even during treatment!!!
Pat has been gone since last Saturday to see Kate in Fredericksburg Virginia. He will be home later today (Wednesday). I am glad he took the trip and got to spend time with her and her fiance Phil.
Christmas is at my house this year with the ever popular prime rib ordered from Hartrich's. If you've never got one from there before....I recommend it. They season it and all you do is stick it in the oven. This will be our third year of having it plus Bret Baker is gifting us with a ham so we are in good shape for a feast this Christmas!!
I cannot thank people for the cards, prayers, and thoughts over the past 9 months of this battle. The drs are so amazed I am still not on any pain meds....I know God has a hand in this because most people at this stage ARE on pain meds. God has amazed me at how calm I feel about even having this cancer. I have always thought I was in control of my life....now, I know God is in control and I am SO thankful for Him. This Christmas Season has just meant more to me but in a different way. With God, everything is possible but without Him, I am nothing. Why did it take cancer for me to figure this out?
I will update next week after chemo and a visit with my favorite dr......the cardiologist-Dr. Goswami. He is the one tracking my blood clotting factor and I see him in Effingham on the 22nd.
Happy Holidays!!
Hugs and Prayers,
Patty
I was really tired the week I was OFF chemo and couldn't figure out why until I was talking with Dr.Dy and he stated I should be taking the B-6 even when I am off the chemo....it boosts my energy and I was about out of gas to run on.
SO.....I am taking two every morning and two every night like prescribed so hopefully I will atleast feel like I am running at half a tank even during treatment!!!
Pat has been gone since last Saturday to see Kate in Fredericksburg Virginia. He will be home later today (Wednesday). I am glad he took the trip and got to spend time with her and her fiance Phil.
Christmas is at my house this year with the ever popular prime rib ordered from Hartrich's. If you've never got one from there before....I recommend it. They season it and all you do is stick it in the oven. This will be our third year of having it plus Bret Baker is gifting us with a ham so we are in good shape for a feast this Christmas!!
I cannot thank people for the cards, prayers, and thoughts over the past 9 months of this battle. The drs are so amazed I am still not on any pain meds....I know God has a hand in this because most people at this stage ARE on pain meds. God has amazed me at how calm I feel about even having this cancer. I have always thought I was in control of my life....now, I know God is in control and I am SO thankful for Him. This Christmas Season has just meant more to me but in a different way. With God, everything is possible but without Him, I am nothing. Why did it take cancer for me to figure this out?
I will update next week after chemo and a visit with my favorite dr......the cardiologist-Dr. Goswami. He is the one tracking my blood clotting factor and I see him in Effingham on the 22nd.
Happy Holidays!!
Hugs and Prayers,
Patty
Wednesday, November 30, 2011
Where to begin......
I had my second week of chemo on Tuesday and my blood work looks good and the Gemzar went into my veins with no burning AND she got my vein on the first prick in a hard place to even find the vein so I was not only impressed with my nurse but happy with the results of no burning. No side effects yet.....that happens about Thursday/Friday which is just a little tiredness and belly burn from the poison (chemo) they inject into me.
I have no chemo next week and even get to stop the Xeloda chemo after another week. So....my body gets one week out of the month to rebuild and then do it all over again. I feel better than I have in AWHILE.
I also saw Dr. Goswami in the a.m. yesterday and he thinks all looks good. Blood is clotting at a safe level but not too thin to cause a brain bleed.....we hope. I will see him again in 30 days but I have my Anti XA (blood clotting test) checked every week. It determines if I need to up my Lovenox shot or lower it....or keep it at 50 mg which is where is has been for two weeks. I think we might have found the magic amount....lets hope.
I almost have my x-mas shopping done but we mostly do stocking stuffers and $$ so it is pretty easy. I kinda miss the days when Pat and I went whole hog the day after Thanksgiving and hit the malls/stores. Notice I said KINDA!
We have heard a little more about the clinical trial with Dr. Chapman at Barnes Jewish in St. Louis. Still need to wait and see 100% what it consists of but they called Jenn and said I would have to be off ALL chemo for 6 months. I don't think I could do that to my body and I would really worry about metastasis. The drug for the clinical trial is the liquid form of Xeloda. I take 3000 mg a day of the pill form. The BIG difference is it would pump the drug right into the tumor and hopefully cause enough shrinkage to remove it. You are kind of a lab rat in these studies. No one knows if it will work or not. Then you have a pump they will surgically implant under your skin and attach it to your inside to keep it in place. Then I would have the liquid chemo injected....I think it is slowly released over a period of time and they fill it back up again. I should know more by the end of January. I am not ruling it out but my dr in Houston says since I am stable, my tumor had NOT grown, and the chemo is slowly killing the tumor....why change something that is working. It's alot to ponder on but it is also the Christmas Season so I am going to try and enjoy the Reason For The Season as I hope all of you do, too!! I would ask that if you have enough money for gifts, Christmas dinner, gas money to get to the malls, cigarettes......find that extra $10 for a donation to a worthy not for profit charity....Salvation Army, Toys for Tots, a local food pantry.......even giving extra at church to help out with poinsettia's, etc. It should be the first thing you do before budgeting for X-mas but I can guess for alot of people, it is not. It is never to late to change!! Pat and I are doing it this year and we give to charities/church all year long.....but we have not always did a little extra at X-mas like we are this year!!
Happy Holidays to all of you and may God keep you safe and WARM!!
Hugs!
Patty
I have no chemo next week and even get to stop the Xeloda chemo after another week. So....my body gets one week out of the month to rebuild and then do it all over again. I feel better than I have in AWHILE.
I also saw Dr. Goswami in the a.m. yesterday and he thinks all looks good. Blood is clotting at a safe level but not too thin to cause a brain bleed.....we hope. I will see him again in 30 days but I have my Anti XA (blood clotting test) checked every week. It determines if I need to up my Lovenox shot or lower it....or keep it at 50 mg which is where is has been for two weeks. I think we might have found the magic amount....lets hope.
I almost have my x-mas shopping done but we mostly do stocking stuffers and $$ so it is pretty easy. I kinda miss the days when Pat and I went whole hog the day after Thanksgiving and hit the malls/stores. Notice I said KINDA!
We have heard a little more about the clinical trial with Dr. Chapman at Barnes Jewish in St. Louis. Still need to wait and see 100% what it consists of but they called Jenn and said I would have to be off ALL chemo for 6 months. I don't think I could do that to my body and I would really worry about metastasis. The drug for the clinical trial is the liquid form of Xeloda. I take 3000 mg a day of the pill form. The BIG difference is it would pump the drug right into the tumor and hopefully cause enough shrinkage to remove it. You are kind of a lab rat in these studies. No one knows if it will work or not. Then you have a pump they will surgically implant under your skin and attach it to your inside to keep it in place. Then I would have the liquid chemo injected....I think it is slowly released over a period of time and they fill it back up again. I should know more by the end of January. I am not ruling it out but my dr in Houston says since I am stable, my tumor had NOT grown, and the chemo is slowly killing the tumor....why change something that is working. It's alot to ponder on but it is also the Christmas Season so I am going to try and enjoy the Reason For The Season as I hope all of you do, too!! I would ask that if you have enough money for gifts, Christmas dinner, gas money to get to the malls, cigarettes......find that extra $10 for a donation to a worthy not for profit charity....Salvation Army, Toys for Tots, a local food pantry.......even giving extra at church to help out with poinsettia's, etc. It should be the first thing you do before budgeting for X-mas but I can guess for alot of people, it is not. It is never to late to change!! Pat and I are doing it this year and we give to charities/church all year long.....but we have not always did a little extra at X-mas like we are this year!!
Happy Holidays to all of you and may God keep you safe and WARM!!
Hugs!
Patty
Wednesday, November 23, 2011
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
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
Monday, November 21, 2011
Getting Back to Normal
Mom was released from the hospital yesterday afternoon. No surgery, but a higher dose of Lovenox to help prevent more clotting. Dr. Goswami also gave Mom some Lasix to help get rid of the swelling in her face and chest. Her liver is a bit inflamed, which is probably why she's been feeling so much pressure in her abdomen. She will, hopefully, resume chemo this week, and that should help with the inflammation. Her platelets are around 140,000, and the rest of her numbers look good.
Mom has had a bit of a headache since last night, but otherwise she feels good. She's back to work all day today. :) I know she's looking forward to Thanksgiving this year - probably because for the first time in a long time it's not at her house (no cleaning!)!
Thank you for all your cards and hopeful messages. So many great people, many of whom we don't know that well, are praying and sending good thoughts Mom's way. It is an overwhelming feeling to know so many people care.
Please pray that Mom's headache disappears and isn't a bleeding issue, and pray that her bloodwork looks good enough to receive chemo this week.
Written/Posted by Jenn.
Mom has had a bit of a headache since last night, but otherwise she feels good. She's back to work all day today. :) I know she's looking forward to Thanksgiving this year - probably because for the first time in a long time it's not at her house (no cleaning!)!
Thank you for all your cards and hopeful messages. So many great people, many of whom we don't know that well, are praying and sending good thoughts Mom's way. It is an overwhelming feeling to know so many people care.
Please pray that Mom's headache disappears and isn't a bleeding issue, and pray that her bloodwork looks good enough to receive chemo this week.
Written/Posted by Jenn.
Saturday, November 19, 2011
Change of Plans
Plans have changed once again. Pending a few more tests, there will be no surgery on Monday. After reviewing Mom's scans and doing an ultrasound yesterday, Dr. Goswami thinks that Mom's clotting may not be any worse than it was when she was in the hospital a month ago. He has upped her dosage of Lovenox a bit, and will do and Anti-Xa test tomorrow to see how thick her blood is. If that test comes back ok, then Mom will likely come home tomorrow.
We will keep you posted. :)
Written/Posted by Jenn.
We will keep you posted. :)
Written/Posted by Jenn.
Friday, November 18, 2011
Surgery Monday Morning
Mom is in a private room at St. John's. There will be no surgery tomorrow.
You may remember discussion in June of a surgery involving a surgeon from New York and a transfusion team. That surgery will occur Monday morning. Essentially, from what I understand at this point, the surgeon from New York will fly in for the surgery. It involves pumping all of the blood out of Mom's body, filtering it through a machine, and pumping it back into her body. In a typical person with no clots, the procedure takes 30 seconds. For Mom, Dr. Goswami thinks it will take about an hour for Mom. They will access her veins\arteries through her neck or groin. Obviously, it involves some risk, but the good news is that after this surgery, all the clots will (theoretically) be gone.
More testament to Dr. Goswami's awesomeness: Mom was lamenting staying in the hospital to him tonight. Last time, the nurses wouldnt let her walk around. So Dr. Goswami told Mom tonight that if anyone says she cant walk by herself, to call him on his cell phone, and he would call the nurse. Mom also told him that last time she was in the hospital, she and I went down to the coffee shop to get coffee. I had been taking coffee up to her, twice a day, for about 4 days. But the second she stepped into the shop, the barista said "We cant serve coffee to patients." Dr. Goswami's reply? "What do you want? I'm bringing you coffee in the morning."
We will keep you posted as we know more information. Mom's in good spirits, as Dr. Goswami thinks she will likely be home Tuesday with no clots!!!!!!
Please continue your prayers. This may turn out to be the best Thanksgiving yet. :)
Written\Posted by Jenn.
You may remember discussion in June of a surgery involving a surgeon from New York and a transfusion team. That surgery will occur Monday morning. Essentially, from what I understand at this point, the surgeon from New York will fly in for the surgery. It involves pumping all of the blood out of Mom's body, filtering it through a machine, and pumping it back into her body. In a typical person with no clots, the procedure takes 30 seconds. For Mom, Dr. Goswami thinks it will take about an hour for Mom. They will access her veins\arteries through her neck or groin. Obviously, it involves some risk, but the good news is that after this surgery, all the clots will (theoretically) be gone.
More testament to Dr. Goswami's awesomeness: Mom was lamenting staying in the hospital to him tonight. Last time, the nurses wouldnt let her walk around. So Dr. Goswami told Mom tonight that if anyone says she cant walk by herself, to call him on his cell phone, and he would call the nurse. Mom also told him that last time she was in the hospital, she and I went down to the coffee shop to get coffee. I had been taking coffee up to her, twice a day, for about 4 days. But the second she stepped into the shop, the barista said "We cant serve coffee to patients." Dr. Goswami's reply? "What do you want? I'm bringing you coffee in the morning."
We will keep you posted as we know more information. Mom's in good spirits, as Dr. Goswami thinks she will likely be home Tuesday with no clots!!!!!!
Please continue your prayers. This may turn out to be the best Thanksgiving yet. :)
Written\Posted by Jenn.
Another Bump in the Road
Mom's edema is back; not as bad as before, but it's getting worse in her chest, under her arms, and in her face. She's also been having some sharp pains in her chest. She called Dr. Goswami this morning. He told her to go to the Emergency Department ASAP for a CT Scan. As most people do, Mom loathes the ER. So, I called Dr. Houston and asked him to order the CT. He agreed, and Mom and I drove over to the hospital. After lots of waiting, RMH did her scan, and Dr. Houston called with the results. It appears that the clots in Mom's vena cava are worse. Dr. Houston and Dr. Goswami REALLY wanted Mom to go to Springfield by ambulance. But, as most people do, Mom loathes ambulances. So, she and Pat left for Springfield shortly thereafter in Mom's car.
On the drive up, Dr. Goswami's office called Mom's cell phone to alert her to their plan. Mom will have surgery to remove the clots tomorrow morning. Please pray for a safe and productive surgery and a fast recovery. I will post more in the morning.
Written/Posted by Jenn.
On the drive up, Dr. Goswami's office called Mom's cell phone to alert her to their plan. Mom will have surgery to remove the clots tomorrow morning. Please pray for a safe and productive surgery and a fast recovery. I will post more in the morning.
Written/Posted by Jenn.
Friday, November 4, 2011
Newfound Hope
First off, I would like to apologize for our lack of consistent posting. It seems as though we post only when Mom has doctor appointments. We hope to start posting more frequent updates.
Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.
This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that swelling dissipates.
Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.
Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.
While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.
Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.
Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.
Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.
Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.
http://newsblog.barnesjewish.org/tag/dr-william-chapman/
http://transplantblog.barnesjewish.org/tag/dr-william-chapman/
Written/Posted by Jenn
Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.
This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that swelling dissipates.
Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.
Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.
While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.
Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.
Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.
Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.
Momma and Braeda enjoying an afternoon nap at home.
Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.
http://newsblog.barnesjewish.org/tag/dr-william-chapman/
http://transplantblog.barnesjewish.org/tag/dr-william-chapman/
Written/Posted by Jenn
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
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.
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.
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.
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.
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.
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.
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.
Thursday, September 22, 2011
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 26th, 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.
Wednesday, September 21, 2011
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
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
Thursday, July 7, 2011
A visit with Dr. Goswami
Today was my dr. visit with Dr. Goswami in Effingham (the heart specialist from Prairie Cardiovascular Health Institute). I had an echo cardiogram to make sure the chemo had not damaged my heart (doesn't happen alot but he wants to keep an eye on me). He just could not believe the difference from day 1 when he saw me all swelled in the face/neck area. He again...didn't recognize me because I looked 150% better than the first day we met. He also...again....took my picture to show his colleagues the difference from day 1 to today.
The man who did the echo stated he would love to trade hearts with me (I guess all that bike riding/walking has atleast gave me a heart of steel) as he just had heart surgery 3 months ago.....I told him I would trade him hearts if he traded me livers and that I guaranteed I would live longer with his heart than he would with my liver!!!
Dr. Goswami reassured us (Pat, Jennifer, and I) that there should not be a problem again with blood clots since I am on the blood thinner.
While I was in Springfield for 8 days, I was reaquainted with an old schoolmate from high school who is now a Physician's Assistant or Nurse Practioner (can't remember which) and she was
on the same floor at St. Johns that I was on. Her name was Donita Polk Schrey (who married Mike Schrey). She graciously let Jenn spend the night at her house one night instead of the couch at St John's. Donita and Jenn talked and Jenn found out Dr. Goswami loved the Dallas Cowboys......so Jenn ordered him a hooded sweatshirt (from all the girls) as a small "Thank You" for saving their moms life. He loved it when we gave it to him today! If all doctors had the bedside manor of Dr. Goswami, there would be alot less people who put off going to the dr.
I want to give a big shout out loud THANK YOU to Donita for checking in on me everyday...sometimes several times a day and gave us her home number so if we needed anything we could call her.
It has been a good week so far and I have worked everyday (only two hours today due to dr. appt). Chemo on Wednesday and we will see how hard it hits me this time. Amy, Samantha, and I have upped our miles to 3 miles per day......I just pray God gives me the strength to keep walking as the chemo gets more saturated throughout my body in the weeks/months to come. My Tarceva rash is just starting to "bloom" on my face but I do think the meds MD Anderson gave me are working better than the Effingham oncologist gave me.
Healing of the body is promised in both testaments of the holy Scriptures.....so I will pray extra hard for not only more healing, but also thanks to the Lord for healing me and having a good report today with Dr. Goswami. I have a long way to go but all is stable at this point and I will take that any day!
Hugs & Prayers,
Patty
The man who did the echo stated he would love to trade hearts with me (I guess all that bike riding/walking has atleast gave me a heart of steel) as he just had heart surgery 3 months ago.....I told him I would trade him hearts if he traded me livers and that I guaranteed I would live longer with his heart than he would with my liver!!!
Dr. Goswami reassured us (Pat, Jennifer, and I) that there should not be a problem again with blood clots since I am on the blood thinner.
While I was in Springfield for 8 days, I was reaquainted with an old schoolmate from high school who is now a Physician's Assistant or Nurse Practioner (can't remember which) and she was
on the same floor at St. Johns that I was on. Her name was Donita Polk Schrey (who married Mike Schrey). She graciously let Jenn spend the night at her house one night instead of the couch at St John's. Donita and Jenn talked and Jenn found out Dr. Goswami loved the Dallas Cowboys......so Jenn ordered him a hooded sweatshirt (from all the girls) as a small "Thank You" for saving their moms life. He loved it when we gave it to him today! If all doctors had the bedside manor of Dr. Goswami, there would be alot less people who put off going to the dr.
I want to give a big shout out loud THANK YOU to Donita for checking in on me everyday...sometimes several times a day and gave us her home number so if we needed anything we could call her.
It has been a good week so far and I have worked everyday (only two hours today due to dr. appt). Chemo on Wednesday and we will see how hard it hits me this time. Amy, Samantha, and I have upped our miles to 3 miles per day......I just pray God gives me the strength to keep walking as the chemo gets more saturated throughout my body in the weeks/months to come. My Tarceva rash is just starting to "bloom" on my face but I do think the meds MD Anderson gave me are working better than the Effingham oncologist gave me.
Healing of the body is promised in both testaments of the holy Scriptures.....so I will pray extra hard for not only more healing, but also thanks to the Lord for healing me and having a good report today with Dr. Goswami. I have a long way to go but all is stable at this point and I will take that any day!
Hugs & Prayers,
Patty
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