Monday, April 29, 2013

One Month Later (Warning: Depressing Post)

Well, it's been a month. It's definitely getting harder. I can't believe how much I miss him, and how much he's the first thought on my mind. I'm so upset that he's not here to see Ryan grow up and to help me through these hard times. I'm so angry about the baby issue and the fact that I've been robbed of a lifetime of happiness with my best friend. I'm stuck in time right now, and can't seem to see anything past dealing with things that have come as a result of Jake's death. The other day I mentioned that I choose to live, and I'm doing that to the best of my ability on most days. The problem is, living is just not the same. There's not the same level of satisfaction in life anymore. Lately all I've been able to do is take a "fake it til you make it" approach, and even that's not working right now. It almost feels like nothing is working in my favor, and that makes any desire to progress even more difficult. I know that most won't be able to understand what I'm saying at all, but those who've lost their spouse will get it, at least to a point. I miss him desperately. Although I was not dependent on him for my happiness, he brought a level of satisfaction to my life that I never could have asked for, and it was beyond anything I could have hoped for. I don't know what to do without him, and my heart breaks more every day (if that's even possible). My kids give me my reason for living so I would never act on anything, but for the first time in my life, I understand the appeal of ending it. I'm desperately lost, and don't know what to do. I hope at some point this begins to get easier, and I hope it happens soon.

Monday, April 15, 2013

When the Numbness Wears Off...

You always hear about how difficult it is adjusting to life as a widow. What people don't really talk about (and maybe it's because everyone handles things differently), is that you go through a period of time where the numbness masks the real pain. From the time of Jake's passing to his funeral, my days were consumed with making plans and making sure my kids were well taken care of. After that, I was trying to accept the fact that he was gone, which was difficult because he spent nearly 3 months in the hospital, with 2 of those months existing in a state of altered consciousness in varying degrees. I haven't talked to him in what feels like forever, even though he's only been gone for just over 2 weeks. Now, I know he's gone, and the numbness has worn off. I feel extreme pain.

Even through the numbness, I cried for my loss. I knew I missed him, and I knew I wanted to smell him and talk to him and hug him again. But now that life is moving on and the expressed concern from others has worn off, I'm realizing just how much I'm affected by his death. I still experience 4 of the 5 stages of grief, sometimes several times in a day. I get so angry that he left me here picking up the pieces. I still sometimes am in denial over the fact that he's gone. Then there are the times I accept it and feel like I can "move on" (whatever that means). And then there are days like today where I am so sad and depressed by his absence that I end up not being very productive in my daily activities. I no longer am in a bargaining stage; I realize there's nothing to bargain about or with at this point. I did, however, dwell there during the last couple of months of his life, particularly during the final week.

Now that the numbness has worn off, I'm starting to realize what people mean about the sadness and tears creeping in at the most random moments. And I'm not talking about the little tear-out-of-the-corner-of-my-eye type cries, I'm talking full on sobbing-and-unable-to-breathe type cries. It's exhausting. I am realizing that when people are depressed and just want to sleep, sometimes it's because the emotion itself is just draining, and doesn't necessarily have anything to do with wanting to completely withdraw from life. I know I don't necessarily want to withdraw. Of course, there's a certain aspect of self-preservation that drives me to be a little bit reserved, but other than that, I want to be involved in my life. I know Jake would be disappointed if I didn't make that happen.

As the days go on, the harder it gets, at least for now. I pray every night for comfort and peace, but that peace is momentary. It requires a constant prayer and seeking for some sort of solace. It doesn't just come. That, in and of itself, is time consuming. And it definitely doesn't help with the exhaustion of everything else. So if I don't answer calls or texts, or just don't feel like going out, it's because I'm soooo beyond tired that I'm really just trying to recover. I know it's a slow process, but it will come.

On a different note, I've found some resources to help me toward my goal of home ownership. I'm hoping this will happen relatively soon as my children deserve stability and a sense of normalcy. I'm very excited about this, and between that and my religious goals (and of course my children), I should have something to live for and work toward for a while. I've always known goals were important, but now that I recognize how easy it would be to accept an early death, I know I have purpose here because of those goals. It's still lonely, but I also know that Jake is cheering me on and helping me where I can. I hope to make him proud of the life I'm creating for myself and the kids, and look forward to seeing him again knowing that I did everything I could to make this life the best it can be for me.

Devastating News

I realize that it's been a long time since I've written, but a lot has happened. On February 5 in the early morning hours, Jake suffered a cardiac arrest. Although CPR brought him back quickly, Jake spent the next several weeks in a coma. The arrest brought on seizure activity that was difficult to control, and he spent nearly 3 weeks in status epilepticus. Over the following 4 weeks, Jake was making miraculous improvements, and everything was really starting to look hopeful despite the neurologists' bleak prognosis. On March 23, Jake had some serious hemorrhaging within his lungs. Over the following six days, one organ after another began failing. On March 29th at 10:24 pm, Jake passed away. The organ failings are believed to be a result of complications from the transplant.

I don't have to say that I am devastated; that should be apparent. My heart hurts that I will not be able to continue on in this life with my companion. It's only been just over 2 weeks since he passed, and it's so fresh that I really don't know how to go on. Life has definitely changed dramatically.

My method of healing involves writing. I have many writings that I intend to make public (writings that many have already read), but I'm unsure at this point if I want to continue using this blog or begin another. This blog title no longer seems appropriate, but it might be nice to have everything from the beginning to current in one place. If I open a new one, I will post it. In the meantime, I will continue to post on Facebook.

Tuesday, January 22, 2013

A Letter to the Donor

To the Person Who Gave My Husband a Second Chance,

I don't think you understand what you have done for Jake and my family. I have no idea how rough the medications have been on you or anything you've been through to give us this precious gift, but I thank you with everything that I am. You probably know that you're saving a life, but you don't know that without your stem cells, my husband would not have much of a chance of living past a year. We would likely not see another anniversary, or celebrate another Christmas together. His baby would not have a chance to know his daddy. You have provided us with hope and that second chance that will hopefully be successful and provide us with a lifetime of opportunity.

Your selflessness is something I will never forget, nor will I ever be able to repay you for this very precious gift. I hope you know in your heart that what you did is so good and beautiful, and your generosity inspires me to want to be a better person.

I pray that you will be blessed in your life in the ways that are needed for you. I pray also that you will know how grateful we are for this part of you that you are giving to us. We are forever indebted and grateful.

God Bless,

The Newrens


To my readers:

You may not know this, but we aren't allowed any information about our donor, and aren't allowed contact for a year or more. We may send letters through the transplant/donation center, but they will ensure that no identifying information is provided. It's actually an extremely hard thing to not be able to express gratitude directly, so this will have to do.

I can't believe tomorrow is T-day. It seemed like this day would take forever, and now it's here and it's real. It still scares me, but for tonight, I'm just grateful. What an amazing gift to be able to give to someone, and an incredibly precious gift to receive. I will cherish this gift for as long as God will allow me, and look forward to spending many years with my husband.

Wish us luck!

Rough Days

I have so many things running through my mind right now, I don't even know where to start. Unfortunately, this post will probably end up as unorganized as those racing thoughts. But I think I need to get it out on "paper."

I never expected this to be easy for Jake. I think I just hoped it based on how well he tolerated the first round. Each round proves harder and harder, though, and I'm constantly surprised at how strong I'm not. It's no secret that I've been nervous for the transplant round since we realized that was the road we needed to take, and I can't say it's getting any better. I really feel that I'm being tested beyond what I was prepared for, and I'm struggling to maintain a sense of feeling grounded.

Radiation began Jan 13th, and lasted for 6 days. Nausea hit hard within a couple of hours of his first round. Each day's side effects got progressively worse, and the doctors had a hard time getting his nausea under control. (Side note: It's been interesting to see the use of psych meds in nausea control. From a psych nurse perspective, it really threw me off). On Friday, he finally had a day that was much more tolerable than days past.

Following radiation, he had 2 days of chemo. Jake was quite nervous for those days, but they turned out to be a bit of a reprieve and those 2 days he was able to spend doing things he enjoys, such as working on dj mixes and playing video games. It was great to see him doing so much better. But that relief was short-lived.

This morning, he was started on an anti-rejection medication, and it really messed with him. His blood pressure went from normal, to 190/100, to 80/42. His heart rate spiked up to the 130's. He had tremors and a high temperature, and he was really reacting poorly to this medication. After nearly an entire day of trying to fix these problems, his providers finally decided that the best course of action is to transfer him to the ICU.

I can't begin to describe the things that start going through your mind when this kind of information is received. I've been struggling with the poor prognosis and long-term survival rates as it is, and then to have him transferred to a higher level of care was incredibly stressful and scary. I took comfort in the fact, however, that I was able to call and speak to Jake through all of this, so I knew that while he was talking he was mostly ok.

Jake remains in the ICU for tonight, and will likely stay there for the majority of the day tomorrow. He is stable now with a BP of about 110/70 and his heart rate is hovering between 100-110 (which is fairly normal for him). His temperature is also back to normal. So he's looking really good for tonight. He receives another dose of the anti-rejection medication, and so they'll monitor him more closely due to the reaction that he had today. We're hoping that he'll be back in his room on BMT tomorrow evening. Transplant is still on for Wednesday, so that's another thing to look forward to. We were hoping that transplant would be the start of the downhill part, but we have learned that the week after transplant tends to be the hardest. We are told that we can look forward to more nausea, mouth sores, body aches, fevers, and all kinds of fun things. I'm really not looking forward to the next week to week-and-a-half of hell.

I really wish Jake didn't have to go through this all. It's hard to watch and know that there's really nothing I can do for him. I just hope that once it's done, we'll be able to have a relatively normal life together, and experience the things we talk about so much. I miss him deeply while he's gone, and am hoping the next 5 or so weeks go by quickly.

Thank you to all of you who were willing to include Jake in your prayers when he requested it; I know those prayers and your faith helped him through this and have peace tonight.


Sunday, January 6, 2013

Bring Him Home

One benefit of living in Utah County is that you can almost bet that Sunday will be a day to avoid crowds. This turns out to be a huge deal to those who are immunocompromised and have to stay out of heavily populated areas. The movie theater is luckily not an exception to this rule.

We knew we wanted to see Les Miserables in the theater since we learned it was coming out. Jake's diagnosis threatened those plans. So we let a few weeks go by, and chose a Sunday matinee to attend (I know. I can already hear the judgement ;) ). I'm so glad we did! I loved the deeper story that the film version brought to the musical, and it added some things that I didn't recognize in the stage version.

As we draw closer to admission to start the transplant process, my emotions are very much on the surface. I found myself sobbing as Jean Valjean sang "Bring Him Home" and recognized the pleas of my heart to be that of the same. I could feel myself begging to God to just let Jake come home; he's so young. I feel comfort in knowing that the many blessings we have received have said that God will take care of him, but sometimes I wonder how it is that God sees fit to take care of him.

I hope for a future of happiness, and even welcome the sorrows if it means continued life together. I have dreams of building a house with Jake, of having another baby, and of experiencing more travel and family vacations. I pray that life continues and we are allowed such blessings.

About transplant: we are so far on schedule to be admitted on 1/13. This gives us a week to get everything together and to enjoy our time with Jake at home. We have not heard anything contradicting these plans as of yet, so this is what we are anticipating.

I can't believe how nervous I can get. I'm just trying to look ahead and to find things to look forward to in the future. In the meantime, I'll continue my pleas of "Bring Him Home".

Monday, December 31, 2012

Lessons of 2012 (Jake update at the end)

It's the end of the year. It's the time for people to discuss how next year is going to be so much better than the last, or to make promises to themselves that rarely last more than a couple of months (I know. I've been there). I find myself in a much different position this year than in years past. I still have goals, and I still have things that I plan to improve upon, but I find the attitude behind it is so much different than it has been in the past.

Since Jake's diagnosis, the biggest thing that has changed with me is a deeper appreciation for people in general, and an attitude of gratitude. Those of you who know me personally know that I'm almost an expert at keeping people at arms length (or even greater distance). There's a huge back story with that, but this isn't the place. What it comes down to is that I just couldn't trust people and their intentions. As a result, I had a really hard time trusting that people genuinely wanted to help. It has been such a hard thing for me to let people in with this, but I am ever so grateful for what everyone has done for us. Basic tasks such as cooking and cleaning (which is more necessary than ever now) have become difficult for me, and I'm so grateful for those people who are willing and able to help out, and to do so with a smile.

I also have greater compassion for people, and a better understanding that everyone has their own struggles. You'd think that as a nurse, the compassion part should have been innate. It wasn't. I thought I had it, but it's been something I've struggled with for a while. Since the diagnosis, I find myself wanting to give help wherever I can. I get turned down a lot, but I'm always glad that I've been in a position to lend a hand. And I also find I'm more willing to give my spare change to the beggar on the street. I've decided that it's not my business what he does with it, at least my heart was in the right place when I decided to give him that money, and it was done with a sincere desire to help.

I feel like this is turning into a braggart post, and that is not my intention. I guess my intention is to recognize that even challenging years can turn into good ones if we let ourselves absorb the lessons that are available to us. This year--although not my most challenging ever-- has been a difficult one, but I'm amazed at how much I have been able to learn from it. I am so grateful for all of you, for your patience with me and for your willingness to help out without so much as a grumble (at least not that I've seen ;) ). I'm still learning, and probably will for the rest of my life, but it's getting there.

As far as an update on Jake goes: He is doing better now than I've seen him in a long time. I think last time I blogged, we anticipated the transplant process to begin 12/30. Well, that didn't happen. For those of you who have not heard, I will start at the beginning.

After Jake had his appendix out, a few days went by before we received a phone call from the surgeon. He told Jake that the pathologist could not identify any appendix cells in the "mass" that they removed. As a result, they wanted to get a CT scan to verify removal of the appendix. That was done on a very busy day of meetings and tests to prepare for transplant. (Odd side note; Jake still has his appendix. The "mass" was just infection on the lining of the gut. Obviously, this doesn't happen often and so Jake is a bit of a medical oddity.)

The next day, we received a phone call from the oncologist, and she said that they were concerned about the inflammation in his gut, and felt it best to take him off one of the medications and give his body time to heal before doing the transplant. We have pushed back the time of transplant for 2 weeks, though we have not received verification of the date. We will keep you all posted, though. For now, life is good, and we're just enjoying the time off! We wish you a Happy New Year, and hope all is well.