Monday, October 15, 2012

Back Home

After our ER visit we were admitted to the hospital for 2 days. We got home Saturday afternoon. Phil is now feeling fine and we are recooping. They are unsure what caused the attack, but he was given some morphine pills just in case. He's only had to use one so far. Apparently that last batch of bloodwork showed some improvement in his billirubin levels which we are choosing to be encouraged about. The 3 days he spent in hospital he was on a rehydration drip and that seemed to help alot, so were are making sure he drinks more water. 

Next step is Oct 31st Endoscopy. We will keep you updated if anything happens in the meantime. Much love, Hollie

Friday, October 12, 2012

More ER Fun!

Hello dear friends, I'm writing you on a comfy chair beside Phil is his hospital bed. He is doing fine, watching tv and there is no need to worry. Here are the details...

Last night around 7 Phil started to have bad pain, went into the bedroom with the heating pad and came back out 20 minutes later saying, "We have to go to the ER right now." I packed essentials and we were on our way. Once again the waiting, testing, bloodwork all takes at least an hour in a half. What infuriates me is that he went from a 7 on the pain meter to a 10 at the end of that hour and a half. No one was rushing and he was crying, and in the most pain imaginable. I had it and pulled the emergency cord, and I basically told the nurse in a very firm tone that he needs morphine RIGHT now and we won't take no for an answer. 5 minutes later he got his dose. I'm learning to be proactive, because nurses really don't realize the gravity of your situation until you put up a good enough fuss. Keep this in mind for the future!

We were given a room and a little later a second dosage of morphine. Finally the pain was gone and he could watch tv in a bit of peace. Hannah came in around midnight and she really made the whole experience great. She has a way! We were moved to another room before we were admitted. The room we are in now is quite comfortable with chairs, a nice bed, storage, window with a nice view and bathroom. There is another bed across the room, but no one there- which is bonus. Phil is able to watch his tv shows and keep his mind busy. He gets tested at least every hour and has already had two doses of morphine again today.

The Dr. said that she would like us to stay another night so they can keep tabs on his progress as they start to introduce food again. Today he is on fluids and is on a constant IV drip of fortified water to keep him hydrated. He is very tough and brave, it is amazing to me. Three elders from our hall came in this afternoon for a short visit, relating encouraging notes from a special assembly day and helping us to laugh. They also said a prayer for us before they left, which was very warm and unbelievably memorable. It was in that moment that I almost started bawling with appreciation but held it in. Now is not the time.

Obviously the Endoscopy was cancelled today that was to be taken place in SF. The Dr. admitted that it is a big sacrifice to postpone it once again, but more important to leave the pancreas alone for it to heal. It is in very bad shape and cannot handle any more shock for a while. I agree with their decision. The discussion of putting a stent in at some point has been brought up, but pushed aside because giving the pancreas a break is key. We will know more tomorrow when he starts to eat food if he is ready to back home to real life. In the meantime, I must admit it means the world that I can sit back and let the nurses take care of him for a bit. They are very sweet and helpful, and I am happy that we can stay another night. There is nothing more lonely then watching your loved one suffer in private. For me, it helps for the world to know and to be there in whatever way they can to keep us smiling.

At this point the Endoscopy has been postponed till Oct 31st, which in my mind is too far off- but hopefully there will be another cancellation and we will get in sooner. We are learning patience, let me tell you. There is nothing worse then not knowing what we are dealing with. It is so much easier to deal with a disease when it has a name. That time will come, we just pray for endurance in the meantime.

Our disability papers are in progress and it is expected to kick in within a month or so. Our pay ended a few wks ago and we are okay, but 60% of his normal paycheck coming in every month will help us to worry alot less. We are not big spenders, and find dignity and joy in keeping life simple. We have a roof over our head and food in the fridge, friends and family who love us and Jehovah, of course- it's all we need.

Tonight Hannah and Tori will be coming to be with us and are bringing me dinner. They are such dear friends, it just melt my heart. We thank you all for your texts and are sorry we can't respond to you right away. We appreciate every word and the fact that you are checking in!! I will continue to update you all here. Much love and thanks!!


Wednesday, October 10, 2012

Endoscopy Bumped To This Friday

Hello dear friends, here's more of an update.

Good news- Phil will be able to get in a week early- this Friday, for his endoscopy because a fellow patient cancelled their appointment and opened it up for us. It will make the waiting period so much less, and will get us that much closer to a final diagnoses. Tori has offered to take us into San Francisco Friday and keep me company while he is under, then drive us back. Phil wakes up with a very sore throat and slow motor skills. It is so helpful on many levels to have close friends around during these times.

Today Phil went in for his weekly blood work. He met with an oncologist this time and she did more of an examination and provided us with a few things to think about. She is thinking that because the tumor has not shrunk and that his bilirubin levels don't change much at all, that it could be lymphoma after all. This would explain the small lymphoma in his stomach and explain why the Predisone is helping him feel better. Prednisone keeps lymphoma controlled and at bay, and thus his boosted energy. Believe it or not, lymphoma would be a much better diagnosis than anything else because it takes simply radiation to cure it. This would be WAY better than Whipple surgery.

We know now not to take anyone's word as law, but are also learning to be open minded and take in different people's suggestions and opinions. She is going to get in touch with our Dr. and recommend a labrascopic biopsy for Phil instead of an endoscopy. This would mean putting him under, making a small incision  above the tumor, and taking a larger biopsy for testing. If it turns out to be lymphoma they would then need to take a bone marrow biopsy as a precaution to see if it has spread to his bones. Once again, a painful procedure but a lesser evil to Whipple.

This Friday will determine a lot, and in the weeks to follow I will continue to keep you all updated and in the loop. In the past few days Phil has looked more jaundice and has lost more weight. He is basically skin and bones. I am going to feed him healthy carbs for the next two days because he will lose more weight after the biopsy as he will need to be on fluids for a day or two. We so appreciate your cards and warm words. I'm hanging on for dear life- without you we would be in bad shape. Thanks again.

Friday, October 5, 2012

Secondary Endoscopy

Quick update: Phil's bloodwork revealed that nothing has changed. Unfortunately he will have to go in for a secondary endoscopy on October 19th and we will know more afterward. It's frustrating that we have to wait till then, since Phil is experiencing some pretty intense pain in his back. He has had this pain on a smaller scale in the past few wks, but he is really suffering right now. We are waiting for a call from our Dr. to see if there is some kind of medication Phil can take to ease the discomfort. It is becoming unbearable. I have heard that aches and pains can be a side effect of Steroids, but since it has progressively gotten worse, we want to check up on it.

It will just be about getting through till the 19th. Soon thereafter we will know what to do next. I am feeling sick over the whole thing, especially because I let myself believe everything was solved and over. I knew I shouldn't have done that, but that's all we want for our loved ones. I am home supporting Phil, making him warm teas and keeping his heating pad warm on his back. All we can do is wait. Much love, Hollie

Monday, October 1, 2012

Important update

Hello dear friends, I'd like to update you all with today's news. For the past few weeks Phil has been doing much better. Eating alot more, having lots of energy and very little pain. It has been so good to see. Today was his secondary CT scan to check on the size of the tumor. Here are the results:

The CT scan does not show any reduction in the size of the mass. But it may be too premature to say the Prednisone is not working. The time frame between the first CT scan and the beginning of treatment was a month so the mass may have grown in that month then shrunk back to its current size with the medication. This could account for it not looking any smaller. The blood tests indicate that the levels have stopped rising and have slightly decreased, which is a good sign.

The original biopsy didn't show any cancer cells, which is good. If it turns out to be a benign tumor and not Autoimmune Pancreatitis then he will still need to have Whipple surgery to remove it after all. But it would have a much better prognosis then if it was cancerous. They will most likely have another endoscopy performed and take another biopsy before proceeding with surgery. If they don't find any cancer cells the second time around they will feel much more comfortable holding off on surgery for a while to see if the Steroid treatment works. On Wednesday I will have another blood test and hopefully it will show the levels continue to drop.

Phil has been advised not to return to work until we know for sure the treatment is working. We will have to file for disability.

All in all we are happy that the tumor hasn't gotten bigger and that he feels good overall. It is scary that we have to do further research and that the word Whipple and Cancer are back in our conversation, but we're choosing to not worry. We expect that the tumor is taking a long time to shrink and that it will all be okay. Worrying doesn't change the outcome. Positive attitudes can do wonders for overall health.

We love you all and thank you again for your support.
Hollie and Phil