Sunday, December 30, 2012

EPOCH Done, Heading Home

Last night Phil finished his EPOCH. We asked to stay one more day and the Drs agreed. This Chemo experience was very different then the first one- much harsher. Phil has experienced constant vomiting, shaking, intense pain and depression. He has lost his hair, and is skinnier then ever. He was unable to get out for bed for weeks until today, with a few exceptions. The Drs encouraged him to get up and do laps, but his condition was too overwhelming to do so. Any movement or ingesting of food causes nausea. They have started him on Ativan which helps with the nausea best, but also causes him to sleep quite a bit and deeply. Thus he is quite upset when woken up over and over by the nurses.



Tomorrow we are to be sent home, with his pump, nausea medication, antibiotics for a supposed bacteria that showed up in one of the blood cultures and Neupogen injections (to build white blood cells). They will be teaching us how to do them before we go. Of course I will do the injections for him. It would just be too sad to see him puncturing his tummy alone. I am naturally freaked out by blood and pain, but have grown a thicker skin and now feel that I can face just about anything for Phil. It is amazing how love just lifts you up higher then you ever thought possible. I am thankful to Jehovah that he trusts I can adapt to this new life. It shows me he believes I am much stronger then I once thought I was. He never let's us be tested beyond what we can bear- and along with the suffering he always makes a way out.

Without his support through friends, family, the congregation and prayer I'm not sure I would be as resolute as I am now. There are moments I wonder if we will ever be able to get over. I can only shield Phil from so much- I must let him be sad, experience pain and the loneliness that Cancer dumps on him. That means I must let go of control, so that he can cope in the ways he naturally must. I also try to find the balance in pushing him gently in the right direction. With keeping distracted, making plans for visits and helping him to get up and move throughout the day. The latter being his hardest test of all. I am also trying to figure out how much to let him sleep, because laying flat day after day puts pressure on the lungs and also leaves room for infection. The body wants to move, even if it doesn't feel good in the moment.

Friends have been dropping by late at night with pizza, listening to my heart and getting me to laugh in the waiting rooms till 2 am. The boys come by to make Phil laugh, and just to be here. The girls take me out to enjoy shopping therapy ;)






Mom and Dad continually provide rides, food runs and endless support. There are always the texts, cards and emails from you all. I want you to know that although things have never been more traumatic, we are able to keep our heads above water. I put all of my energy into keeping Phil occupied, in better spirits, to deal with the nurses mixups and keep him fed, cozy and clean. It is working as he seems as comfortable as he could be. His main frustration is interrupted sleep all through the night and into the day. Of course the nurses are doing their jobs in checking up and giving him the medications and tests needed, but the lack of continuous sleep has really gotten to him. He is much more tearful and desperate when he has a bad night- so in that area, I think it will be good for him to sleep in his own bed at home.

As you can imagine, with the chest pain still around, the intense nausea, and our questions of just how okay is he- we are not ecstatic to head home tomorrow. I would be happy with returning in a few days when his chest pain subsides. They predict that the pain will lift a bit over time. We have gone through this over and over, where they keep us then send us home too soon. But they did let us stay an extra day today so I have to appreciate that. It is such a help when we are here because I can trust the staff to give Phil what he needs, meals are taken care of and I don't have to take care of the house stuff cause Mom and Dad have been staying there. They are leaving Monday and it will then just be the two of us at home. Although we will enjoy the alone time that we have not had in quite a while, it will be hard I think- for me to take care of everything.

Friends have offered to help in many ways and I will be accepting that as needed. I feel awful that our hardships are effecting our friends lives, but I can't let that worry me because that train of thought would cause us to isolate. I trust that they will say yes when they can help, and no when they can't. That is the key to this whole thing.  Kay has offered to come at the drop of a hat, and I will be seeing how things go while I am alone with Phil. She has been helpful with taking care of household stuff while I nurse Phil and she would be happy to be with us during this time. So I am trying to work out timing. People all over the world do it alone for their mate. We will have to see how it goes. I trust that Jehovah will help provide what we need, especially if we ask him for it.



There are many pros to going home including privacy, uninterrupted sleep, the comforts and familiarity of home, the kitties and the freedom to do as we please. We are focusing on these things and always trying to appreciate how many good things we still have in our life. He is alive, and on the healing path. That is a place where months ago, we weren't so sure we could be. Every day I thank Jehovah for Phil and the fact that I was the one blessed to be his wife. Though times are hard, our love remains and takes root further and further down. One day this will be over and it will all be okay. In the meantime we are trying to laugh more then cry- and we thank you all for helping us with that.

Time for me to hit the sack. Much love,
Hollie

Sunday, December 23, 2012

EPOCH Chemo-Time


The other day I decided to be honest about how hard this struggle with Phil's cancer has been on this blog. I was thinking it would be best to keep it light and just use the blog as a way to update you all with the latest news. But after all the comments I received, I have decided it is best to keep it real when the time calls for it. I want to thank each of you for your amazingly encouraging and supportive comments- you have no idea how much they comforted me and will continue to keep me from feeling alone!! Mom has continued to be an amazing friend and support through this ride. She's so beautiful through and through. I have never met someone so generous!



Friday we were blessed by an influx of visitors and it truly recharged my batteries. Though Phil was out of it by the afternoon, he was so happy to have the energy of good friends about him. And he is also happy for me to be laughing! The generosity continues to overflow. Even after all this time. The Thorslunds took the day off work and spent it hanging with us in the afternoon, and even picked up Phil a juicy burger and me a yummy burrito! Later on Dolans dropped by with pizza, pop and hugs- we watched Jeopardy and caught up as night fell. Just as they were about to leave Dan and Ashley, Vanessa and Travis walked in with anniversary gifts and treats, even a whole baked banana bread loaf for Phil made by Vanessa and Ashley's mom!!! Thank you so much for that, we are loving it!!! 


We talked and laughed and got to know each other a little more, as we are new'ish friends with all of them. It touched our hearts when Dan asked in a text that he would like to come more often to see us. I find it hard to imagine you all wanting to spend your evening in a hospital, but I must say it truly does keep us strong!!

Dad arrived late Friday night on a backed up plane. You can imagine the traffic. Yesterday we changed rooms to Oncology and things are quieter over here. Phil woke up with his hair falling out, so we decided it was time to buzz his head. That they did! Many thanks to his personal barber, Tom! We all agree, he has a great shaped head :) After I gave Phil a nice shower to wash the day away, he snuggled up in a freshly changed bed for the night. He looks so cute with his bald head, so vulnerable. So far he hasn't been cold, but I would like to get him some beanies for the future. Dinnertime was frustrating as the nurse was busy and forgot to give Phil his nausea meds in time. He ate dinner but it came back up. Thankfully he always has the Boosts around for nights like that. The rest of the night he was fine and we just hung out.





This morning Linda brought me breaky and we hung out with mom and dad while we watched tv. Afternoon we listened into the meeting. Phil slept the afternoon away, as did I. We are all exhausted. As of today there is talk of Phil's chemo starting tonight. It would be the Rotuxin IV which lasts about an hr. He has never really had bad side effects from that part. The rest of the mix would be administered over a few days, continuously. Afterward they will keep him here for a few days to watch him for infections and provide the support he needs. I am very happy about that, as I have realized this edited chemo concoction is extra yucky and intense. However, we are 100% onboard and ready to face the storm.

Mom and Dad will be going back Monday and will be missed!. I'm not sure how he will be feeling mid-chemo, but sometimes it's just nice to have friends around in the backround while he sleeps. We will be here in the hospital for at least another week. We would love to see you :)

Dad had an in depth conversation with one of the Drs and he made this up to share with you all:

































Phil Update – Sunday December 23rd 

Q.  What caused the fluid around his heart?
A.  There are a number of reasons for fluid build-up, but the specific cause in this case is unknown. The fact that the fluid receded on its own, and is almost completely gone, is good news.

Q.  Did the first round of chemotherapy produce the intended results?
A.  It’s impossible to gauge success by 1st round results. It’s only after multiple rounds that doctors are able to determine success.

Q.  How would you describe Phil’s current condition?
A.  The current strategy for treatment is not palliative. In other words, it has not been designed for the purpose of relieving or soothing symptoms without effecting a cure. The strategy is to aggressively fight the disease with full recovery and remission as the intended outcome.

Q.  How dangerous is the new, more aggressive chemotherapy?
A.  The greatest danger is the possibility of infection due to reduced white blood cells caused by the chemo drugs. However by keeping Phil in hospital, all of the resources needed to fight potential infections are available in-house. Because doctors and nurses can monitor his condition around the clock, the team feels more confident about introducing 2 additional highly aggressive drugs into Phil’s chemo cocktail. He likely will stay in hospital until the New Year.

Now for information on the new Chemo regimen for those of you who like the details:

EPOCH, dose adjusted for Non Hodgkin's Lymphoma. Here's what's in it:
-Etoposide
-Vincristine
-Doxorubicin
-Cyclophosphamide
-Prednisone

I will tell you more about it when I know more about it, lol!
Apparently his white blood cell count is back up as is his hemoglobin, so it looks like he's on track for a best case scenario Chemo-ride!

Let us know what you're doing over the holidays, we'd love to see you :)
Much love and more dets soon!
Hollie

Thursday, December 20, 2012

We're Here To Stay, For A While

After our main Drs had a final discussion, they have agreed that it is best to keep us here, but move to Oncology. Phil is not in good shape and they want to monitor him closely. They will continue to give him help with Neupogen to produce more white blood cells. As soon as he reaches the number that's healthy enough for Chemo, they will start it. She sat down with us and basically said, I'm sorry but RCHOP is not cutting it. The cancer is not going away and we have to do something drastic. So they will edit the Chemo mix for a more intense approach. I'm not sure of the exact name for the mixture, but I will be getting the paperwork sometime today so I can tell you a bit more about it.

The stronger the Chemo, the faster we can move on with our lives. The Drs are pretty sure that the fluid around the heart is cancer related, as he has not shown symptoms of a virus at all. The fluid has decreased a bit and he is able to breathe a bit better- but far from breathing great. Yesterday when he took a shower, by the time he was done he was shivering uncontrollably. I thought he was just cold, but he was actually having a hard time breathing. I got him into bed and dried his hair and bundled him up with blankets and pillows surrounding him. What else can I do.

I love this man more then I can handle, and I can't take the pain and suffering away. I can be there to hold the bucket as he vomits, to open his pudding, to wake him up when he is having a bad dream. If I could do one thing on earth it would be to switch places. Every day I watch the nurses puncture his pale, fragile skin with needles- but his eyes glaze over and he barely twitches because this has become our normal. All I can think about is us dancing together- when he can stand up tall like he used to, with his eyes sparkling and youthful again. That is my happy place. It will be dark out with twinkle lights on around us- and we would be with friends. Good food and wine being enjoyed by all. How could we ever have prepared for all of this? It is only with Jehovah's strength and comfort that we can keep our sanity.

We don't want you to feel overly sad for us, but we do want you to hear how hard things are. It is too hard to carry on our own in a secret bubble. That is why I keep updating this blog, so you can be let in and understand what Cancer means. There is one thing I keep saying to everyone around me: Please enjoy every day that is good. Recognize how amazing "good" is. Life is hard for sure, but it is mostly good. Realize how huge health is, how unbelievably special true love is- and cherish these things with all of your might. You can't control what happens tomorrow, but you can pray for appreciation of today.

Let go of pride, high expectations and baggage that will poison your relationships, your growth as a couple, as friends, as a family, as a human being. Focus on how many amazing things we have each day. Talk about them, and make plans to do more innocent and simple things like going to the beach, going on a picnic at the park, or even playing a board game together. Laugh as much as you can, and give to your loved ones in the ways you do best. Life is amazing. Love is a blessing. Friendship is priceless- give all of your heart into everything beautiful around you.



Although we do not celebrate Christmas we will enjoy the time off everyone else can enjoy. Dad is flying in tomorrow and he is always the perfect person to make us laugh for hours. We will be here for a while, it could be weeks but we will see. We do miss home, but we understand how important it is to keep still and reserve energy. It is very hard for me to get my head around going home at night to sleep, but I really should once in a while. I just feel that there are things that happen in the night that Phil needs help with, that Nurses just couldn't provide for him. It is so different to always have your loved one nearby to help you.

We would enjoy visits from you, especially later in the day. Unfortunately we cannot really plan too far ahead because he can feel fine one minute and horrible the next. The best thing you can do if you would like to visit is text me and we will try to make it happen. We love and miss the congregation so much, being able to see all the friends weekly. But we listen in through the phone to the meetings and so enjoy hearing your voices and receiving encouragement through that channel. We appreciate your care and interest in our struggles and I thank you for reading my words, even when a little emotional.

We hope to see you very soon,
Hollie

Staying Overnight Again

We are still here in the hospital, they decided to keep us overnight again because they will be doing the heart echo tomorrow (Thur). We will then see if the fluid around Phil's heart has decreased, or increased. From there they will decide on whether it was just a virus or indeed something more serious that we should look into further. That would include sticking a needle into the fluid to test it. That wouldn't be fun. So we are hoping it's just the virus. Another good thing about us staying here today is that they were able to give Phil Neupogen.

Neupogen is a white blood cell builder, which targets the bone marrow where blood is made. It is simply given via needle, which went smoothly and caused little pain for Phil. The main side effect is sore bones, or skin around the area punctured- but he has not experienced that yet. The most painful thing Phil has each day is the shot in his stomach to prevent blood clots. He is very brave, let me tell you. The most he will show is a flinch in his eyes. The nurses are always impressed. With what he has gone through physically, a needle is a piece of cake.



Phil ate pretty well today, and enjoys his Boost drinks. This is great because I have heard that they can be a lifesaver for cancer patients with little appetite. The drinks aren't super healthy, but full of calories and protein which are the most important thing of all. Like I said before raw vegetables and extra healthy foods are actually hard on his system, and right now vegetables are actually dangerous - because of his non-existent immunity. The best things he can eat are cooked well, starchy and high in carbs. Right now he is loving tater tots, chocolate ice cream, mac n cheese, Boost, pudding, banana bread, milk, sandwiches and cereal. He seems to be over McDonalds at the moment, lol!

I'm not sure if we will be staying another night tomorrow, but Phil is anxious to sleep in his own bed. We trust that the Drs will do what's best for us. I know I miss the kitties, cooking real food and of course, our bed. The nurses are wearing masks when they come in to be safe. We really have to be careful that Phil doesn't catch ANYthing.

Tonight I was able to escape to girly land as I colored with Tori. Coloring is one of my fav past times, it's just  so easy and pleasing to the senses. Especially with all the crayons Dolans bought me!!



Dad is coming in Friday and I can't wait! I talked to Kay today and she will be coming up the second week of January to help us and finally see her son. We have such amazing support. I know we could do it on our own, but it would be so so hard. So we are thankful every day, for family and friends' generosity. You guys never give up on us!!

P.S. The Dr said Phil's hair would fall out this week, but we're pulling on it and nothing comes out! When it starts to we will just buzz it off. Phil has a good shaped head ;)

I will keep you posted tomorrow.
Much love, Hollie

Tuesday, December 18, 2012

ER Visit and diagnosis for Chest Pain

It has been a few days since my last update because there's been another crazy bump in in the road. It is very hard to keep track of time, and to explain what days we are in and out of hospital so I will just include the important stuff.

This past Friday we went in for a pain management assessment. Phil had been taking medications by mouth for breakthrough pain in his chest and it was very obvious to us that it wasn't cutting it. After an emotional appt. the Dr could see that Phil's pain was a huge problem that needed to be aided with something that acted faster. Since his chest pain came on like a wave out of nowhere, it would take him at least half an hour to an hour to feel relief- so he would suffer a 9 or 10 pain level until then. Absolutely horrible. Thankfully we agreed that a pain pump would be best. A pain pump is a "cassette" like box that houses a bag of liquid pain medication. It runs through an IV into Phil's arm and acts much quicker then pills. The pump has a button to press when he needs a dose, and that way he can be in control of his pain. They brought us in that night as impatient and tested the pump to see how much he would need. The next day we were all ready to go home and put the pump to good use.

When we got home Phil vomited right away, as the strength of the medication is strong and causes nausea, ALONG with the side effects of chemo. That was the first time Phil really experienced the nausea I have been reading about. It has continued to be an issue, but is treated with 2 medications that work about as best as we could hope for. Another side effect of the pain medication is that he feels extremely tired. He sleeps most of the day, with moments of clarity. The less Dilauded he needs, the more awake he can be to enjoy his day.





Saturday and Sunday were fine, but overshadowed with extreme fatigue, as the pain in his chest increased and more medication was needed. By Sunday night around 10, we were in the middle of the Survivor finale and Phil just looked at me with alarm and asked for his heart rate monitor. He tested it, and the number was 131. A minute later is was 143. He felt his heart, all of a sudden go into palpitations and he knew it wasn't right. We threw on our shoes and mom drove us to the ER. If you are not sure what a healthy heart rate number is, 60-90 is normal. By the time we got to the ER and tested his blood pressure again, it was around 150. By this point Phil was shivering with panic and I was trying to calm him down. After a few tests we finally got a room in the ER. Every moment feels like a century.

They hooked him up to a saline drip for instant hydration, took blood tests, an xray and cat scan. His heart rate went down into the late 120s by around 2 am. There were no answers. All that they said was that Phil should give himself pain medication as needed. At this point it hurt just to breath, let alone a deep breath. He just tried to rest and sleep a bit until we knew what would happen next. One thing that we have had to muster up through the last few months is patience. Most of Phil's episodes happen in the night, and that is when all the great Drs we work with are home, cozy in their beds. So we have to wait and wait and wait until a Dr somewhere can help. It is unfair, but unfortunately that's just the way hospitals work. Kaiser has really been amazing, so we try very hard not to be rude or frustrated in those long hours. But, it is the hardest thing on earth for me to do. We are so scarred from that ER.


With no concrete answers they admitted us to Telepathy (heart problems), which is just down the hall from Oncology (cancer), where we were 2 days before. I tell you, I know this hospital like the back of my hand. It has been more of a home to us then our own in the past months. That said, it is a comfort being here where our fears are shared and aided by professionals. Phil sleeps like a baby here and my body has adapted to the chair-beds next to him. Though I must say my neck and back are shot and my eyes constantly bloodshot from lack of undisturbed sleep. Unfortunately this particular night, we had to share a room...

The moment we got settled in, we heard a disturbing and painful moaning behind the curtain on the other side of the room. A curtain is not a wall at all, not even close. You may not see what's going on, but sometimes hearing things going on are even more scary. That night, we basically flew right into the Cuckoo's nest. The moaning gradually raised in volume until he was uttering muffled words. One nurse kept trying to keep his oxygen mask on as well as, I'm guessing...multiple IV's or something attached to his arms that were keeping him alive and stable. At first she was nice, encouraging and comforting even. But as he kept pulling everything off over and over she had to be firm. This went on for 45 minutes. How do nurses do it? At this point he was now saying, "no, I don't want to, no! I have to go to the Christmas party!" ???

Gradually more and more nurses came to help keep him under control, as he was trying to get off the bed and fighting against the staff physically. Finally two drs came in one after the other and they basically tied him down. They used restraints of some sort because he was definitely angry and confused. Over the course of the entire night, the nurses were coming in and out of the room turning overhead lights on and off, trying to yell over his words to keep him under control. Over and over we would hear, "WHO IS THE PRESIDENT OF THE UNITED STATES? WHAT CITY ARE WE IN? DO YOU KNOW WHERE WE ARE? STICK OUT YOUR TONGUE- GOOD, NOW YOUR FOOT, NOW THE OTHER ONE! WHAT YEAR IS IT? WHO IS THE PRESIDENT OF THE UNITED STATES?!!!!

We looked at each other a few times without words, our eyes saying it all. "This is torture, this is a nightmare, when will it end?" Phil's heart rate kept going up and down according to the noise, the slamming, the lights. I have never seen him so desperate and frustrated. If that wasn't enough, Phil would press the button for assistance from the nurse and she just wouldn't come at all. We waited an hour at one point, until finally he said over the monitor that it was getting ridiculous. When the nurse came, she wasn't happy - most likely overworked, but not apologetic about her absence. Everything was so wrong!

I was able to catch a few winks somehow, but I highly doubt Phil caught any. By the morning his nerves were shot and he requested we get a separate room. Thankfully later that day, they moved us. The guy behind the curtain gradually settled down and surprisingly, spoke normal words and didn't seem that crazy after all. He was complaining to the day staff that he was mistreated and that everything was unfair. What I found out through listening is that he was on some kind of medication that night, and it made him disoriented and confused. I could tell by the way he was talking later on that there definitely was something off with him mentally, but I was amazed that a medication could go so wrong. I wish I felt sorry for him, I kind of do. But mostly I have NO idea why the hospital put us in that room at all?! For someone who needs to bring down their heart rate, that was just about the worst case scenario you could come up with.



When we were moved to a new room, everything changed. We felt safe and okay again. It was a big room, and it was getting dark out so we could both get some sleep. More discussions were had between the Drs, a heart echo was done and a blood clot was ruled out. Phil slept the rest of the day and ate nothing. This morning he woke up, drank a Boost and has been eating little bits throughout the day. Thankfully, the hospital provides free food, that is usually very tasty and you can order it at any point up until 7 pm. I got Phil a bunch of snacky stuff and he definitely got more cals today. That is so encouraging. His pain was much lower today, as was the pressure in his chest. He could carry on a bit of conversation and even laughed once. Here is the current verdict on Phil's diagnosis:

The Current Diagnoses For Pain In Chest
The Drs are sure now of one thing: there is fluid around the heart.  At this point it is not limiting movement of the heart which is very good. The reason he was doing better today is because his heart adapted to it's new environment. The question is what IS the fluid. They said it could be a virus which would go away on it's own (and it is most likely that). Or it could be malignant, as part of the lymphoma. The only way to deal with that is already being done - Chemo. They are going to do a secondary heart echo on Friday. If the fluid has lessened, it is the virus. If it has increased or is the same they will most likely stick a needle into it and get enough of the fluid to test it. That in itself is risky, especially with Phil's very low white blood cell count. But, the Drs know best, and I trust they will do what is right for Phil.

We are going home tmrw (wed) aft most likely. It is a high risk to keep Phil here with basically NO immune system abilities. It will be safer for him at home. We will go back in Friday and go from there. As far as visitors go, we must make sure that friends are not sick and have not been sick for a few weeks- just to be safe. It is evident that he could not fight an infection and we must take that seriously. I will be glad to get Phil home into his bed and in an environment where he is more likely to move around a bit more.

Now for some positive stuff! Mom and Hannah came with some Chipotle for me today, as well as Greyson!! This is a little baby boy Hannah babysits, along with his sister Keira. They are like a nephew and niece to us and it just made our day to see him. Mom has always loved boys, and always talks about wanting to have some of her own :) She has an amazing way with babies and kids! Mom's saying, "he looks like an otter!" Hannah is an amazing babysitter and overall child whisperer. Anyone she babysits for could vouch for it!


Also, our morning nurse walked into our room just as I was waking up. So basically he is from Jersey Shore... amazingly, he was so nice to Phil! He was giving him a cancer pep talk saying things like, "It's gonna suck but you just gotta fight! Don't give up, you're young and you can totally beat it, man!" I just thought it was cute that this guy chose nursing as a profession and that he really does it well :) His hair was way higher then this picture shows..


Mom has cleaned the house up and made us some nice chicken fried rice and has said the words, APPLE CRISP in passing so we have something nice to look forward to when we go home. She has been such an amazing friend and rock even though she is in pain for us too. She is made of some special stuff, and I am so fortunate to have her here beside me during this time of our life. Her and dad text and chat all day, like kids with crushes in the schoolyard. As you can imagine, this warms my heart and makes me feel so deeply happy.

Kay will be coming soon to see her dear son, and I have been in touch with Laurence throughout the past few days so everyone can be in the loop. It is so hard for the family to be so far away and helpless. But they do support with calls and texts and of course prayers so we couldn't ask for more. In a few months this will all be over. A distant memory that ultimately will have strengthened our love, our faith and trust in Jehovah. I must think of it like that. That is is just for a while and that it will get better. Why worry, why spend a second on it. Worrying today robs tomorrow of it's joy.

I will update as news comes in. We thank you again for all of your support.
Much love
Hollie

Thursday, December 13, 2012

Taking it Easy

We have been home for a few days now and Phil is still doing good considering. Up until last night Phil hadn't had any symptoms other then fatigue and pain. He got a little bit of nausea before bed but mostly slept it off. He woke this morning with a little bit of it, but not too bad. We have the right medication to take care of it. He is all snuggled up cozy on the couch with Jeopardy and tea. This was him two nights ago :) ...



As you can imagine it is hard for a man to live without work for long. It has been about 4 or 5 months now, but I can't be sure- I'm so lost as to where we are in the year. December, how did that happen. I would say that he is being very strong in battling feelings of desperation and deep frustration as regards to physical limitations. I'm so proud of him, he is such a warrior.

He still has a good appetite but only for certain flavors. Carbs always work well with his stomach. It will be a week tomorrow since he started chemo. He will have ups and downs, so we are trying to enjoy the time now where he is at least okay. We are encouraging him to get out of the house and walk every day. According to the drs we should gradually up his exercise. It is so easy to fall into a place where you never really get out of bed, but this would be bad in every respect.

If you want to take him out for coffee, dinner, or even just to spend some time at your place this would do wonders for him. The best thing you could talk about is spiritual things, as this is when he is most excited and up in spirits. Also if you are interested in being a part of our weekly family study, just let me know- we love to include new friends. We are also thinking of doing a potluck, game night, things like this so his atmosphere is cozy and full of life. What could be better?

Here is a picture of the moment they started him on chemo... He really felt fine through the whole thing. In fact we had friends visit through the whole thing. Everyone's reaction is truly different!


I want to thank you all for supporting me as well. I never feel alone, with all of your texts and visits. While I was in the hospital and Phil had friends with him I was able to slip out for some alone time. This is something I have been encouraged to do by a few different friends with experience in the Cancer dept. A huge part of me being a good caregiver is that I can get away a little each day. It is also good for Phil and I to have time apart, even if for an hour. We always meet up again with sparkles in our eyes and a refreshed soul.

JW House has been a dream for taking a step out of the hospital to spend some time with friends. Here is a picture of my dearest Linda who brought McDonalds breaky for her and I to enjoy. We talked, ate, laughed and cried. I am constantly blown away by our friends generosity and empathy!


Nadine brought Cottage Pie with a bunch of other gifts to the hospital the night Phil started Chemo. It was AMAZING. Cottage Pie is the South African version of Shepherd's Pie :) I tell you, there is NOTHING better then home cooked dinner after weeks in hospital

There are so many more people to thank but I don't have pictures of them at the moment. Becky and Mike for coming by with my amazing gift bag of wonders, Joe Schorr, Steve Lane, and all the elders for coming by so many times to encourage us as well as make us laugh in the hospital. Tori and Jon for always doing so much for us, even taking me out for coffee or a sundae- you guys are like a brother and sister to me! I could go on for hours thanking you all. We still get cards and texts, none of you have forgotten about us!

We also got an amazing card from Phil's childhood congregation in Coral Springs with a bunch of notes and signed names of his good friends! There is a constant influx of this kind of stuff!! And then mom, always here and going for food runs according to Phil's cravings. She is amazing in ways I could never explain.



More updates and pics to come, now that I am home with the laptop. Much love to Phil's family as well, as I know it's so hard to be far away from him. Thank you for your texts and calls, you are never out of our thoughts. Please be comforted to know he is doing remarkably well so far and has tons of love surrounding him. Thank you for your support from wherever you are!

Tuesday, December 11, 2012

Back Home

We have been discharged and are home! Phil has been given some effective pain medication and is pretty relaxed and cozy on the couch. We trusted the drs and it seems we can take care of his pain at home. It will be amazing to sleep in our own bed again! We enjoyed dinner at JW House and he still has a great appetite and no nausea. He is very tired, which is to be expected. We will be encouraging him to exercise daily to regain some muscle mass, as well as helping him eat more so he can maintain a healthy weight.

So far, we are relieved by his lack of side effects. He is such a fighter :) I will keep u updated. Much love, Hollie

Monday, December 10, 2012

Chemo begins

Day 3 since Chemo started! Phil is doing very well side effects wise! We hear the beginning isn't as bad as two wks in, so we are enjoying this time now. Some are amazed by his lack of nausea, I have to agree! We have decided not to talk too much about what he will go through with this process but instead, expect the best. There is no need to let Cancer rule over us as a constant storm cloud.

He is very tired and sleeps a lot and deeply. I love seeing him that way, so at peace- His body heals slowly with his eyes closed. He is eating very well and that too, is rare. All good surprises thus far. The main issue is pain control. The pancreas tumor rarely bothers him, but the one above his heart does.

According to the newest cat scan that tumor has grown since his last scan in Nov. It is not a circle like a imagined but rather weird shaped, flattened almost and spreading out sideways. It is hard not to be mad that the misdiagnoses combined with our waiting on the drs schedules has caused time to pass and just NOW the Cancer has been dealt with. It really has been so hard to patient. Especially because everyday that passes the Cancer spreads a bit more. But we get such amazing care here! So although the waiting was horrible, at least now we are taken such good care of. Now the chemo is in him and further growth has been nipped in the bud.

Like I said we choose not to worry or view things dramatically. It is a choice to give into fear, and we don't see it as an option. Phil doesn't care to do research or even know details about Lymphoma. He feels that the more he knows the more he will worry. I do the research and share what I think is important. The main thing we know is that chemo is the answer and that its finally started.

The drs want him back home but the pain he has is extreme and unbearable if not regularly relieved via IV. They were trying to send us home today until we put our foot down and explained how serious this is. The pain above the heart he's experiencing is new, in fact it started the day before we came in for the stent last week. We would've come into the ER even if he hadn't been admitted, the pain was that bad.

So after a long discussion the Dr understood and agreed with the help of our explaining things in detail, that its not time just yet. She figured out the meds he could take orally so we could wean off IV Dilaudid and simulate a home environment. This is a trial and error period. They start with the lowest dosage and add more bang as needed. Problem is the amount she scheduled for Phil didn't come close to cutting it.

He needed breakthrough pain relief at least 4 times tonight. I am determined not to go home until he has 100% control over his pain. It is unsafe for Phil to suffer that much and for such a scary reason. The drs do want to get it right, so we will work together to meet in the middle. I'm sure it is possible to come up with the right amounts he needs.

Dad went home tonight after a nice weekend of just hanging at the hospital and sharing encouragement and laughter. Mom is still here, as we agree we need each other at this time. I can be a rock with her support. As Phil's main caretaker that is key to my sanity. We all know how to give each other space and she always gives me and Phil alone time. She cooks, cleans, does the running around. Although I keep giving her an out she said there's no where she'd rather be.

Friends have been dropping off home cooked meals, treats, goodie bags with stuff for us to play with. It continues to warm my heart with how much everyone still helps and cares. Coming to this hospital is a complete sacrifice. The parking, trying to find our room, passing by open doors of countless suffering souls - laying all alone. I've lived here for weeks at a time, I know how it feels to enter this world we all try to not think about. So I thank you once again, for taking the time and spending the energy to come and see us. It REALLY keeps us going!!

The next Chemo round is in 3 wks. It is 10 hrs long and most likely an outpatient procedure. Until then we will manage pain, any new side effects and do our best to keep Phil comfortable. So far, VERY good. Phil will most likely lose his hair in about two wks, so we will buzz his head before then ;) Thankfully its a lot less traumatic for men then women. Hes a tough cookie, we will take it all with stride. We will need to get him some cozy hats!

If you would like to visit us just text me, he's loving company in the afternoons. Dinnertime too and later in evening. If you're not sure what he likes to do here are a few things:

-Family study with a small group
-Play board games
-Watch Jeopardy at 7, Survivor on Wed nights, 60 minutes on Sundays, David Letterman and Jimmy Fallon, nature shows and documentaries.
-He loves to just sit and talk about spiritual things while enjoying snacks and tea.
-Service from home like letter writing and phone witnessing.
-Going to friends houses for dinner or just to hang out.


The list goes on but it is usually things he can do while lounging or lying down. He likes a quiet environment but loves to laugh at the same time. We look forward to spending time with all of you <3

As far as discharging and progress on Phil's chemo regiment I will keep you updated. Much love and thanks for your continued interest and support, Hollie


Friday, December 7, 2012

Success!

After a heart echo test and xrays, the drs said we were good to do stent. It was done at 130 pm and finished around 430 today. He took a long time to come out of the post anesthesia fog but within a few hours he was shoveling back jello, ice cream and even a burger! The advice from everyone that I have talked to who's gone through cancer is to let him eat whatever he wants, whenever, as much as he wants.

Fact is he can't digest most foods or even stand the taste of them. He has lost around 50-60 lbs in the last few months and would continue to if we limited his diet to only organic and healthy. Basically whatever calories he can stomach, we get excited about! Never did I think I would be okay with him eating ice cream or a McDonalds burger during this time, but the fact is cancer wastes you away and u must obey any cravings that come along. So I have decided not to worry too much about what he eats but more that he eats a lot when he can.

Once chemo starts he will battle with daily nausea and possibly vomiting. Also an overwhelming amount of fatigue- both mean more weight loss. So we have been told and I've learned through research, when hunger strikes get as much in as possible because u have to beat nausea before it comes. Your taste also changes and everything tastes like metal. There is a chemical aftertaste you can't get rid of. So if he wants a hamburger at 2 am, he gets one. once he is well that is when we will heal BOTH of us w good healthy food.

As usual Phil fights like a pro, coming out with his dry jokes when you least expect it, and being polite and patient w us and the staff. Though hes a toothpick, his skin is mostly back to a normal color and he still looks handsome! He does not volunteer his frustrations, pain or sadness, but instead smiles and keeps his brave face. I do the same. When we talk, exchange looks, it is always w strength. We have moments of despair but don't let them last more then a few minutes. There is no point in wasting energy losing it.

We pray daily to think of the big picture and how everyone is struggling with something big these days. That this won't last forever. That Jehovah has overflowed our cup with little and extremely big blessings. Everyday something life changing happens. Everyday we get a text or an email that comes just when we need it.

Today a Dr came in and said hello, noticed our bible on the nighttable and said "are you witnesses?" And we all laughed, yes! Turns out her husband, a little older then Phil had pancreatic non hodgkins lymphoma! Better yet he's been in remission for 6 yrs. I have been praying to connect with someone my age who's been through all this. How could we ever feel desperate or completely lost with all of the congregation praying for us, keeping in touch and offering help?


I keep hearing that congregations all over the map are keenly interested in our situation. Its gotten back to bethel, to old friends in Canada who provide daily support even after all this time apart. Phil's friends in Florida, and friends of friends all over. It is rare I look in an oncology room and see the patient laying beside a friend. This fact might be the hardest part of this whole experience. Just realizing the sheer number of people who have no support, who wake up every day feeling alone. All I can do is smile as I walk by. I could never express to you all how much your concern and support changes our daily lives!!!
Amazingly, dear friends meet me for breakfast or dinner, making me laugh and helping me get a change of scenery for a bit. The best part though is that I can cry. I am not one to complain or victimize my situation in any way throughout my life. Its my nightmare to be a burden or a downer. But at this time I have let my walls down because I need the listening ear and embraces close friends offer. When I have talked about my feelings I am able to laugh again and return strong and positive for Phil. I have realized how huge it is for me to get out everyday. It always helps me keep proper perspective and regroup.

Phil and I try to do little things together that bring in a normalcy to our days. Yesterday I crawled into bed w him and we did a crossword, giggling like we used to. It is so important to laugh together. I miss sleeping beside him and just being able to cozy up while we watch jeopardy every night. But the bed is too small and my arm falls asleep if I hold his hand too long. Nothing is normal. But we work on it and above all keep what we have always had- our sense of humor.

Mostly he sleeps, but that makes me happy because then he's at peace and resting his soul. Maybe even healing a bit. We always remember this isn't forever, its only for a while. As you all know too, each day makes us anxious! you too can get through your own battle. With prayer for strength to endure and requests for wisdom to know how to cope, along with daily bible reading you really can't feel hopeless at the end of the day. Throw all your burden on Jehovah, he wants to make our load lighter. the ball is in our court to throw it over to him.

Back to chemo...they plan it for tmrw or over the wknd. All depends on how his body reacts to stent and how bad inflammation is. It WILL happen very soon. Once again thank you for your care and I will keep u posted!! Its 3 am, time to zonk out!
Hollie



Wednesday, December 5, 2012

Actually...

Stent postponed. Anesthesiologist says its risky to go under w chest problems because anesthesia puts pressure on organs and relaxes lungs which could be bad. As a team they will do more xrays, ct scans, tests to find out whats going on. Then we can move onto the next step. The roller coaster is quite a ride!

A Stent It Is

Bilirubin up again today, tumor above heart causing issues- so after discussions they will put a stent in so we can start chemo asap. Endoscopy will be done around 130, 2 this aft. We will stay overnight so they can watch him. Stents can be tricky. More news to come

Tuesday, December 4, 2012

Quick Update

Stent not needed today as Bilirubin is down to 2.3. That is for now. There will be further discussions tomorrow on when to start chemo and move ahead. We r being kept overnight because Phil has some chest pain, most likely from mass above his heart. It is not unbearable, but being dealt with thanks to Dilaudid. No need to worry about it, drs are taking care of it.

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Here is a friendly note to friends and family. Although we appreciate your continued concern and desire to know how things are going as soon as they happen, it is very hard to keep up with everyone esp with the stress and lack of sleep we experience. We are surrounded by people constantly, rarely with any privacy or time on our own. If we haven't been in touch its probably because we are relishing some peace and quiet together. These moments are rare but key to our stability.

This really is the place to look if you want up to date information, and I will try my best to fill u in as soon as I can. I can't guarantee I will update the moment after a procedure but just as soon as I have the emotional energy and time free.

If you would like to talk to one of us, definitely text me and not Phil. He panics when the phone rings because he can't find energy to explain things over and over. I'm sure you can all imagine. So please text me and I will reply when I can. I will rarely pick up calls because I am running around or talking to drs most of the time. So you can leave a message also, as a second option. We want to receive your love and concern, as we are all in this together.

For Phil's family, I keep in touch with Kay, and she is the one to call for updates. This relieves me even more. For my family you all have been communicating through Facebook which is perfect. For friends, you know to check blog, text and look on IG.

If you text me or leave a msg I will get back to you. But first check the blog. If its not updated yet, hang in there a day or two it will be. I also update on Instagram (thewovenwolf) and sometimes Facebook. If you need my number just comment below with your email address and I will send it to you. thank you so much for understanding, we love you all!

Sunday, December 2, 2012

Stent Or No Stent, That Is The Question

So it looks like things are moving ahead after a week of rest and time outside the hospital. A few days ago we had an appt. with a physical therapist, who helped access Phil's shape and what exercises he will need to be himself again. He will start very small as his energy is non-existent and he is quite weak. At this point he can take a 10 minute walk at the most, then he will come home and crash. So we keep it to 5 minutes at this point. He needs to lay down for most of the day, but we encourage him to get fresh air, even for a bit.

After that appt. we consulted with Dr. Vempati, our Oncologist Dr. about where we should go from here. I will try to explain her words as best as I can. I have had to do a lot of listening and reading to understand everything that has happened and will happen. So here we go:



Phil has a few malignant tumors as you know. At this point the lymphoma resides in his pancreas opening and bile duct, one large one above his heart and two in his lower back lymph nodes. The pet scan taken a few weeks ago lit up the spots on his 3D XRAY where we should be concerned. That is how we were surprised, along with the Drs, that it wasn't just in his GI tract. The best way to cure B-Cell non-Hodgkins Lymphoma is with a combination of radiation and Chemotherapy. His radiation is all finished up and it is what ultimately stopped the bleeding from continuing. We went every morning at 8:30, and he even received a diploma at the end of it with all of the Drs signatures :)

Dr. Vempati however, informed us that his Bilirubin levels have not dropped all that much from the beginning of radiation. But we can be thankful it took care of stopping the tumor from growing more, which was pushing against friable tissue in the pancreatic regions. Radiation basically decomposes or kills cells. The tumor in his GI is about the size of a golf ball, and though it has not shrunk a lot, it is kept in a reasonably good state right now. This will only last for so long though. We really have to start Chemo. Note the picture below. I have added circles to show you where the tumor is...



Problem: We cannot start Chemo until his Bilirubin levels are down to 3. He is at 5.3, and it has been that level for a while now. When Bilirubin levels are high, this means that the bile duct is obstructed an unable to filter toxins properly throughout digestive tract and liver. As you know, Chemotherapy is toxic soup that just about kills you but not quite. If we were to flood his body with it right now, that means that the toxins will not be able to flush and filter properly- that is life-threatening. Think of this: He has jaundice, which is a sign that his body is not filtering well NOW. He has to filter well before we add more toxins. So we have 2 choices, and neither of them come without risks. Here they are:

#1 Choice: Put a stent in the bile duct/pancreas area where the tumor is. This is a little thing that pushes the bile duct open, even though it's squished closed by the tumor. This enables the bile to flow freely, resulting is a cure for the jaundice, and then bringing the Bilirubin levels down. With stent in, the Drs get the R-Chop Chemotherapy started straight away. This is the best case scenario for nipping the spread of Lymphoma in the bud faster and more efficiently.

The downside: Putting a stent in this sensitive area could start the bleeding all over again. Remember that the kind of tumors Phil has are ultimately balls of teeny tiny blood vessels, all mixing together into a messy mass. If you try to touch or even cut into it, the tumor will bleed and it is very hard to stop. We were told time and time again that burning a tumor to stop bleeding doesn't usually last more then a few hours. But this was proven wrong a few times, because that is how they stopped Phil's hemorrhaging. It does work for the most part, and is there as an option.

The stent is put in place by means of Endoscopy. That's where they put you to sleep and stick a scope (camera) down your throat and do their work from there. It is very detailed work. But Phil has had at least 3 or four of them done now, and they are a breeze compared to anything else Phil has gone through. First they will look around with the camera and see what shape the tumor is in. They can tell if it has improved with the radiation or if it is still too risky to mess with. If it is too messy, they pull back out and go onto plan #2.

#2 Choice: This part is hard to explain but I will try my best. Basically, the Drs would have to come up with a custom mix of perfect levels, kinds and amounts of Chemo made just for Phil. They would get it through his body in a way that bypasses the liver altogether. I am not sure how they do this. I am pretty sure it is through infusion, but I will get back to you on it. In Dr. Vempati's words: "it's not fun". But I trust the Drs. They have saved Phil's life at least 4 times in the hospital, under the most intense moments you could imagine. They know his case very well and will work together to come up with the best help possible. Phil's case is big in the hospital at this point and the Drs realize what is at stake, esp because he is so young to get this kind of cancer. They want to win this thing as much as we do.

With the #2 Choice, they would start with very small doses, as the bilirubin is too high to mess with. Slowly but surely the tumors would shrink, and when the bilirubin is down to 3, they can go in with R-Chop full boar. I have asked many, many questions, even suggesting some reasonable things that amazingly, the Drs have agreed with and are taking action to get done. First and foremost another pet scan to see in detail how the body is looking as far as the spread or even the shrinkage of the lymphoma. Also the continuation of Rotuxin, one quarter of the R-Chop Chemo mix that does not cause any negative effects to Phil's body, but does a small part in keeping everything at bay.

Now that you know the options, here is the plan for next week:

The Plan-
Monday night Phil goes in as inpatient and sleeps over. I am hoping they will do a pet scan while he is there. Early Tuesday morning Phil goes in for Endoscopy with intent of putting in stent. If it looks good, they put it in. He would be on close watch as he came to, and went through the day. If he is fine, he is free to go home Tuesday night. I would like to stay overnight once again, just to be safe - mostly because I know how quickly that bleeding can get out of control.

Thankfully all of our bloodless alternatives for raising his hemoglobin have succeeded. When he was at his lowest, around 3 or 4 a few weeks ago, he is now up to 14! That is the average number for a healthy man! Everyone at the hospital is in shock, and so are we. It is pretty amazing. The hospital spared no expense so that he could get the special nutrition and EPO he needed to survive. So if he begins to bleed, and the Drs go in and stop it, we don't have to worry like we used to, as much. We are so thankful and impressed with Kaiser Permanente.

Wednesday he starts Rotuxin chemo, which takes about 5 hours. This can be done as outpatient via infusion, and last time Phil had it done, he had no side effects- he was simply tired afterward. He will also be getting his iron infusion, maybe at the same time. We always have JW House for meals and comforting time away from the hospital when we need it...easily one of the biggest blessings of this whole experience.



As far as the rest of the week goes, it all depends on how he reacts to the stent, or if they go for choice #2. I will keep you updated. Dad flies in Friday night for the weekend, and will be able to give mom some much needed cuddles and encouragement. She has been a huge help and I'm definitely unsure of how I would be surviving without her. All of you and your texts, prayers and concern are keeping us going as they have been for months now. Hopefully this week goes smoothly and we can get this whole nightmare overwith and get back to life as twenty-somethin lovers ;)

Note: Phil is loving his carbs right now. He finds that when he eats white food he doesn't experience pain while digesting. He enjoys subs, pizza, pasta, cereal and shakes. I would rather him eat more veggies, but he is getting SOME and fruit too. Most importantly he is gaining weight, and that is HUGE before Chemo starts. He needs strength and fat on him to battle through it. I have read that those undergoing Chemo have no appetite at all. Now is the time to get him ready. If you feel like dropping in to say hi and drop him off a treat, you can look here for his current food favs. Be sure to text me before dropping in, because sometimes we are out, in an extra bad mood, or sleeping LOL. We love you and would love company so don't give up trying to get in touch even if we are seemingly busy all the time. Phil does best when his friends are around him! It's pretty amazing!




Hugs and love to you all. Hope you are all hanging in there yourselves.
Hollie