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. 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!!

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's you. I thought you died when you had the brain were really bad!  I was like....well, thank you very you get paid to say that to patients?  I don't remember much of my "brain bleed"...."cerebral hemmorage" or just plain 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 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 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 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'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 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 day at a time!!  You all have a blessed Thanksgiving and pick out something even small you are Thankful for this of the things I will list is of course, is all of YOU! Peace be with you all~

Monday, November 21, 2011

The Most Wonderful Time of the Year

We decorated mom's house for Christmas and put up her tree about a week and a half ago. Everyone was there to help decorate, eat veggie soup, and drink hot spiced tea. Enjoy the pictures of our wonderful day together!
 Braeda watching Rylan and I put together the tree.
 Stealy Dan loves this time of year!! So many boxes and paper to hide in.

I stuck as many stuffed animals as I could into McKenna's bibs. She acted like they were really heavy and she had her arms around them as if she was holding them all. Too funny!

Written/Posted by Amy

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.

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.

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.

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.

Wednesday, November 16, 2011

JaJa and Braeda

Amy went back to work this week, and I will be hanging out with Braeda on Tuesdays. 
Mom came over yesterday for awhile. Obviously, she cracks Braeda up. :)

Mom is feeling well and hoping to restart her chemo very soon. She is even entertaining the thought of going back to work this week (for half-days, probably).

I am confident that Barnes-Jewish Hospital is fantastic (my mother-in-law is a testament to that). However, their lack of calling when they say they will is INCREDIBLY frustrating. The Clinical Trial Team has not called back. I called yesterday, talked to about eight different people, was promised three different returned phone calls, and still got nowhere (and no returned calls). Our fingers are crossed that they will call today. I know Mom is more than ready to make a decision on her treatment plan and move forward.

Written/Posted by Jenn.

Monday, November 14, 2011

The Roller Coaster Continues

I think it's fair to say that we've all (Mom, Me, Amy, Samantha, Pat, Leslie, etc.) been dreading writing on the blog this afternoon/evening.

Dr. Chapman's office called around 3 p.m. today. He is not willing to perform a resection due to the involvement of Mom's hepatic artery in her tumor. In addition to the occlusion in her vena cava, the clotting is extensive in the veins through her liver.

Mom may still be a candidate for the clinical trial of a chemo pump on cholangiocarcinoma patients. Dr. Chapman's office said that the Trial Team would be calling Mom today, but no call came in. The trial has not begun yet, but will soon. We don't have much more information on the pump, but hopefully when the Team calls back, we will. There is a possibility that the pump and/or the chemo regimen Mom was on before will shrink the tumor. If that happens, then she might be a candidate for resection at that time. 

My Mom is one of the strongest, bravest people I know. She is coping with the hand that has been dealt her extremely well. However, it is incredibly hard for her to entertain the notion that she might soon be cancer-free, only to quickly realize that 'cancer-free' is further away than she hoped. Please keep her in your prayers tonight and in the coming days, as she attempts to regain her footing. If you have time, please drop her an email, send her a card, message her on Facebook, etc. A little sunshine on a gloomy day goes a long way. 

Thank you, thank you, thank you for all your prayers. We know they are being heard. Surgery just isn't in God's plans right now. 

Written/Posted by Jenn.

Friday, November 11, 2011

Of course we don't mind waiting...

Dr. Chapman's office called Mom this afternoon around 3:30. He hasn't had enough time to review Mom's scan with the radiologist and doesn't want to be the only one to read it. Mom must wait until Monday (a LONG 60 or so hours from now) to hear his decision.

On the upside, we have 60 additional hours to pray. Go on. Get going! :)

Written/Posted by Jenn.

Thursday, November 10, 2011

Potential Resection

In an effort to describe our anxiousness yesterday, allow me to tell you about our first encounter with Dr. Chapman. After an hour or so of waiting, the nurse finally called Mom's name. We walked down a long hall and turned a corner. Samantha ran into the phone on the wall, knocking it to the floor. A very nice man walks up smiling, says "It happens to the best of us", and picked up the phone. Turns out, the man was Dr. Chapman.

Dr. Chapman is an incredibly straight-forward, genuine man. He reviewed Mom's history and began discussing her options. Mom has intrahepatic cholangiocarcinoma. There are two other types: extrahepatic and hilar. Intrahepatic is incredibly rare. It starts in the center of the liver, so it involves many of the critical structures (veins and arteries). Intrahepatic cholangiocarcinoma is the only type that is not eligible for a transplant. The recurrence rate is unfortunately high. Mom would have to be on anti-rejection medications, and if the cancer did come back her body would be unable to fight it off. Essentially, they could be wasting a transplant liver.

The next option is a liver resection. A resection would involve removing the tumor. Mom had a volume MRI yesterday afternoon at Barnes-Jewish. This type of MRI will allow Dr. Chapman to ensure Mom has enough healthy liver remaining if he can remove the tumor. Judging by the scans he's seen so far, he said it was 'borderline'. He will also have to make sure that she has an artery that is not too involved in the tumor. He thinks that her right hepatic artery may be spared, but until he see the MRI from yesterday he can't say if resection is possible. The resection surgery is quite risky for intrahepatic cholangiocarcinoma. It isn't uncommon that Dr. Chapman actually clamps off all major arteries/veins, removes the liver completely, takes it to the back table to remove the tumor, and puts it back in. Mom will know by tomorrow afternoon if Dr. Chapman is willing to do the resection. If so, it looks as though the surgery would occur fairly soon. The other complicating factor in a resection is that Mom's inferior vena cava is 100% occluded (clotted). If the resection occurs, he would probably remove the entire occluded portion (about 10 inches) of her vena cava and reconstruct it. Even with a resection, due to the size of her tumor, Dr. Chapman believes Mom has a 50% chance of the cancer recurring. There are many unknowns at this point, but we obviously hope that she is eligible for the resection.

The last option, if she can't have a resection, is a clinical trial that Dr. Chapman recently got approved for. It is specifically for intrahepatic cholangiocarcinoma patients and would involve placing a pump just under Mom's skin that would pump chemo through an artery directly into her tumor. It has less side-effects than the chemo she has been receiving, would affect her blood less, and has a better response. It sounds as if Dr. Chapman can't do the resection, then the chemo pump is what he would recommend Mom doing.

It was an overwhelmingly hopeful appointment. Dr. Chapman is the first doctor Mom has seen that has said "Yes, I think there's a legitimate chance I can take the tumor out". And even a 50% chance of recurrence is a 50% chance of her being cancer-free. I think she would take those odds without hesitation.

Mom continues to feel more like herself. She has been walking every day and walked almost a mile yesterday. Her smart-ass witty banter has returned in full force and is a welcome reminder that she is feeling much better. Please pray that she continues to feel well and has enough healthy liver and uninvolved arteries that Dr. Chapman will feel comfortable doing a resection.

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.

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.

Written/Posted by Jenn