Life Unafraid - Metastatic Cholangiocarcinoma

ICU Update - September 18th, 2012

Moms still in ICU. She's having a lot of pain and can't talk too often because of coughing and sore throat. I just saw her now. She can take visitors but only for short periods because she needs rest and shouldn't talk too much.

She's on complete bed rest because of the blood clot in her leg. I briefly spoke with the Pulmonary doctor. We're waiting on biopsy results of the blood clot in the lung. I'm not sure what they are looking for. Pain medication is being modified to a continuous supply for right now.

With love, Mike.

Another Blood Clot

Doctors found a third blood clot today, this one is in the right leg. They seriously considered doing another surgery tonight but it was called off. This surgery would have been to install a filter/screen type device in the leg artery to prevent the clot from rushing to brain or heart, I'm not sure which one. Whereas the other two clots (right lung and portacath tip in chest) run straight to those vital organs and not in any location where a filter type device should be installed due to blood traffic/direction.

The reason it was called off is because the current plan is already to continue the Heparin and introduce Coumadin (blood thinning medications to dissolve clots). This will work on all clots simultaneously in her system.

Overall everyone seems to think the procedures went well today. There were small complications but none that are significant to mention. Right now the doctors and nurses have a lot of monitoring to do. Let's pray mom gets rest, to relieve pain, and complete healing.

Tomorrow my mom should be out of ICU and back into her room on the third floor. I will update tomorrow when we know more. Thank you all so much for your kind words, prayers and everything that you do for us.

With love, Mike.

ICU Update

Moms doing okay. She's really groggy from the medication and now it's time for rest. Family is there with her now as I left. Hold off on any visits for today. I'll give an update later this evening.

From Recovery to ICU Bed 1

Mom just got transferred to ICU and we're waiting to see her while the nurses setup. There will be a great deal of pain she will be dealing with while breathing and especially coughing. She is on a lot of pain medication right now. Will update more as we find or out.

Out of Surgery, In Recovery Room

Mom made it through the procedure. Her hemoglobin is dropping and the surgeon said the other doctors need to make a call on these blood clots. No cancer was found in lung area and the ascites build up is not from the cancer in that location. The surgeon said its coming from somewhere else - he visually and verbally described it as coming from the stomach area, low and center, some sort of fat producing tubes. He talked too fast and ran off before I could get more details. Waiting for her to get out of recovery room and into ICU.

-Mike

Surgery Now - September 17, 2012

Moms in surgery right now. The main reason for the surgery is the ascites build up in the lung. Apparently it's filled back up to about where it was before it was drained.

Right now they are doing various things, but mainly they are opening up a spot between the rib cage on her right side. There will be a lot of poking around, biopsies, draining, and fusing the lung to the pleural cavity - essentially the wall of the rib cage to prevent more fluid build up.

They will leave a drainage tube hanging out of her chest for about a few days because the fusion takes time and is not immediate. They may move the tube after a day or so. Once the drainage slows down to about 3oz in a 24 hour period they will remove the tube.

This procedure is very complex and there will be a lot of pain. We must continue to pray boldly for my mom and the surgeons.

I will update when she gets out.

-Mike

Likely Surgery Tomorrow - September 16th 2012

My mom is likely to have surgery tomorrow along with other procedures. I'm not going to go into a lot of details on this post and I will update tomorrow throughout the day.

Basically this blood clot in the right lung is the biggest risk and the doctors want to do a biopsy there and possibly some other things. Additionally, the ascites appears to be building back up in the right lung area, so they want to do a major operation and open her up, sort-of detach the lung from the walls and reposition and/or medically glue down in a way that would help prevent more fluid build up. This is all based on current blood loss situation for another minor side effect and other things that need to be monitored every some hours throughout the days.

Timing sounds very important in all of this. The doctors want to do the surgery tomorrow before they start the next type of blood thinning medication. It all sounds like its happening too fast. I read up a little on the list of procedures and surgeries for tomorrow. They don't sound easy by any means. It sounds really intense to me. I have some questions lined up for the doctors tomorrow. We all need a clear understanding before we move forward with this. We meet the doctors tomorrow in the morning, sometime before noon. We'll know more then for the plan. Please keep my mom in your prayers.

With love, Mike

Short Update - September 15th, 2012

Not too much to update for today. Keeping this update simple. MRA results did not reveal any problems from the heart arteries to the brain. No results on the chest X-ray but she just went in for another X-ray as I'm updating here. Pain is lessening from the fluid removal procedure. Heparin seems to be doing its job by thinning out the blood - we can see that clearly with minor complications and bleeding. I missed out on the doctors update regarding the mass behind the heart, but my understanding from my mom is that it may not be a significant issue at the moment and is most likely a blood clot.

My moms spirits are pretty good. Just going through all the motions is very challenging everyday. She's not getting as much rest as she needs - but that's what the next few days will most likely be... more rest, monitoring and waiting. The doctors will be watching things closely and we should have an idea when my mom will be out of here by early/mid next week.

Thank you all for your visits, phone calls and prayers. We'll post another update tomorrow.

With love, Mike.

Are We There Yet? - September 14, 2012

Hi friends and family. I see all of the activity on this blog and I hear about all the prayers, thank you always. We are so grateful to have you near. If I were to give an astronomical analogy of what you all mean to us - it would go something like this; You are the Dark Matter to the Galaxy of our family. Our gravity alone is not suffice to bind us together.

I'd like to help by answering some questions about visitation and contact. My mom absolutely loves visitors... we all do so much. If you would please comment on the blog posts when you plan to visit so we can know when to expect visitors. My mom is asking for phone calls. Her vision is not up to par for reading her cell phone texts and emails. So please feel free to call her instead. Often times she can't answer, but she will call back when she can. Again, thank you all for what you do for us.

As for the blood clots, we learned that there is a high risk blood clot at the tip (and caused by) the chest portacath. This is in addition to the very high risk blood clot in the lung. The doctors don't want to remove the portacath just yet, because they don't want to dislodge and/or disrupt the blood clot there. The plan is to stay on Heparin blood thinning medication and also ramp it up in the near future with Coumadin, another medication which will further thin out the blood. But I think the doctors want things to settle for a few days and do some monitoring before starting Coumadin. As for the mass behind the heart - we still don't know all that is going on with that. It "may" be a blood clot, but we don't have 100% confirmation.

Today my mom had quite a few tests. We don't have results from any of them yet. The cheat X-ray is to examine why there is still pain in her chest, behind the right lung. We assume this is because the huge needle required to drain the fluid. The MRA was done today. This test was done to examine the arteries from the heart to brain. No results there as well. On a good note, coughing has improved from the fluid drain in the lung. Going back on the portacath thought - the plan there is to perhaps add a PICC-line portacath through the arm. For those that don't know what this is; the portacath is kind of an easy access plastic thing close to the heart, attached via tubing, which allows access to veins without frequent pokes at the arm so often. It's somewhat a necessity for chemo patients and all of the frequent needle access.

We're not sure of the future chemo plans and other hospital and doctor visits at the moment. We're taking things one thing at a time.

With Love, Mike.

Busy Days and New Challenges - September 13th, 2012

First, please forgive me for being vague with doctor terminology. It's sometimes challenging to keep up with the differences of an oncologist, ophthalmologist, cardiologist, nephrologist, pulmonary doctor and all the things they do and say. I wish they would use more acronyms - I'm good with those. So I will continue to update in high level terms.

The photo you see is a liter of fluid drained from the right lung... I'll describe that in more detail later in your read.

Last few days have been incredibly busy around here. It was so nice to have friends and family come visit and pray over my mom, and for the ones who could not be here but prayed anyways - thank you all.

My moms been through quite a bit... We're faced with new challenges in this battle. But over the past few days of tests (MRI's/CAT-Scans/Ultra-Sounds/Blood-Work/etc...), we've learned so much more is going on in her body that we didn't know before.

There are more tests to follow tomorrow. But here is what we do know. My mom has blood clot in her right lung. The doctor referred to it as a life threatening situation and started immediate action. The doctors also observed her lungs are being filled with ascites, the same fluid that has been building up in her abdomen. This fluid build up has been compressing her lungs - this wasn't there back in June when we had a CAT scan then. The doctors referred to her lungs or the fluid there being pacified - the right lung was compressed half or shortened about 50% and the left lung a bit less; a third. This is why she has been short of breath and coughing over the months.

The doctors removed a liter of fluid from her right lung as they needed to take action right away. They chose the right lung because it is impacted more. And the follow up question is why don't they do both? That's because it's too high risk if there is a complication with the lung expanding once again. So they drained one lung this evening because the blood clot needs to be cleared or prevented from further strokes. Strokes are dangerous as you may already know.

Removing the fluid doesn't directly help the blood clot, but it had to be done before starting the really strong medication for blood thinning. This is called Heparin. It's far beyond your regular prescribed medications and my mom won't be able to be poked nor cut open as the bleeding is very difficult to stop or control when your blood is this thin. I hope I explain the details in a manner that you may understand. I'm still digesting and learning myself. Oh and the fluid drain should also help her breathing as you can imagine.

As for the stroke, my mom will be seeing a heart doctor, brain doctor (I think), ... Physical Therapist , eye doctor... And I think that's it. And this is on top of the cancer doctor, lung doctor, kidney doctor, primary care physician and anyone else that I forgot. We could really use a single point of contact doctor... I say that sarcastically, but it's true sometimes.

Tomorrow will be another day of tests - specifically high density contrast while in a CAT scan. This one will be focused on arteries. We're also waiting on results of the investigation of a mass behind her heart.

That's all for now. Please keep praying.

With love, Mike.