A Journey Through The Maze of Rare Illness

Sometimes it's never ending...

2011-05-08T19:30:00.000-07:00

Lately, I've had a lot of days where I'm tired of this life. I don't mean living life, I mean life with a sick spouse. I'm 43 and my weeks are spent going to work, raising kids and taking them to their activities, looking for a better paying job with more hours, struggling to pay bills and put food on the table, and just generally feeling as if I'm missing out on living life. I see my husband sleeping all the time, and feeling lousy. It pisses me off that he's always sleeping while I'm running around keeping our lives going. He can't work so I'm left having to do it all. I come home and I don't like being here...it's depressing and lonely, and honestly, just plain lame. I'm tired all the time. I wonder how much more of MY life do I have to spend living like this? I also feel like God's abandoned me and what I wanted for my life, and that my kids have been put into a situation they didn't ask for. And God is letting my husband suffer and waste his life sleeping and feeling lousy and being in pain. Why? What is the point?

Then I feel guilty to be complaining...I'm not sick, I'm not the one in pain. But I still have to live with the consequences of illness. How do I make my life fulfilling and satisfying? I watch friends and family members doing fun things and socializing, and going places...and I'm here...working, housecleaning, chauffering, cooking, and taking care of a sick husband. I feel like my life is passing me by and that's not what I want. When will it turn around? When will it stop? When will things ever get better? And how do I stay positive and live MY life through it all? And am I being selfish feeling this way?

*sigh*

Sometimes it feels like there's no light at the end of the tunnel....where is the light?

Blessings

2011-01-04T06:32:00.000-08:00

As a new year begins, I can't help but reflect on the year 2010. As we traveled through life last year, we literally felt like the poster children for Murphy's Law. Dave had numerous health problems including 2 months off last winter as he went through the hellish withdrawal from prednisone, treatments tried and failed, and finally a hospitalization and a nephrostomy for a failing kidney in October. In addition, we went through 3 cars, constantly struggled with financial issues, I had 2 surgeries within 5 weeks after a hip implant fractured my right femoral neck, and we've watched as our son has struggled with uncontrolled ADHD which has damaged his self-esteem and affected his performance and enjoyment of school. We lived in fear last year...in fact, it seemed like the theme of the year. Fear of losing our home, fear of Dave's death, fear of our child failing and hating himself, fear of our struggles never ending. But as the year came to a close, we were given abundant blessings, and with that came some hope for a better future.

We've had our share of disappointment in some of the people in our lives since Dave became sick...people who haven't bothered with us, people who are in denial, people who don't understand the hell we've been living and expect us to cater to them. However, the end of 2010 brought us angels we didn't expect, who taught us that when times get tough, people are there and people will help. I'd like to share some of the things people have done for us this holiday season that we will forever be grateful for:

My parents and inlaws chipped in and bought me a new car.

We received a large gift basket from Stew Leonard's a few days before Christmas. It was loaded with food items and when we opened it, we found a small green box with a note telling us to look inside. We looked inside and found $800 in cash. This basket was left anonymously one evening inside our back door in the mudroom.

We received a card from "Santa" in the mail that contained $125 in gift cards to the grocery store and a $125 gift card to Target.

Our children's school bought Christmas presents for our kids and gave us a Thanksgiving dinner, as well as $125 in gift cards to the grocery store.

My grandmother gave me the remainder of my uncle's bank account (he passed away a little over a year ago).

People have cooked us meals several times over the last couple of months.

Our inlaws have bought us 2 tanks of oil this winter.

These are just the bigger things people have done for us. Dave and I have both been out of work for the past couple of months due to medical issues, so these things were huge blessings at a time when life was the darkest it's ever been. What I learned is that people DO come through when you need them...and if you let them. We've always been the type of people who do these things for others, and karma has come back around to us. We are so incredibly grateful and blessed to have these angels in our life, and someday we hope to be angels to someone else. Even through the hardest of times in life, good things happen. It's given us a brighter outlook for 2011 and we look forward to paying it forward in whatever way we can.

The Rollercoaster

2010-09-29T20:03:00.000-07:00

One thing I've struggled with and learned the not-so-easy way is that when dealing with a chronically ill spouse, one has absolutely no control over how our lives go. We THINK we have control...we get up, go to work, take care of our children and spouse, maintain a household, try to socialize when possible, and maybe even try to plan something in our future. Just when we get somewhat comfortable with the way things are going... we "accept" what is going on and go on living life...we are thrown a curveball. In baseball, the batter knows the potential for a curve ball is always there, and yet it's still a surprise when the pitcher throws one. This is true of ECD as well, and we were thrown a curveball this week

Sunday morning, my husband told me that he didn't think his kidneys were working right. I asked him why he thought that and he said that even though he's been drinking plenty of water, he isn't peeing much. He's also had hot flashes and at the same time, he's cold and shivering. He's also been having a lot of lower back pain. I told him to call his doctor on Monday. His doctor had him go for a renal ultrasound, and today his doctor informed him that the tumor is pushing so far into his left kidney that it's folded in half and is barely functioning. The tumor is also now affecting his right kidney and it's starting to lose function as well. He's heading for kidney failure. Both kidneys look as if they are TRYING to function. He has to go Friday for a surgical procedure to insert stents in both kidneys. If the stents fail on the left, they may have to remove his kidney...if they both fail, then that is likely to be fatal.

We realize with this disease that nothing is ever set in stone, and we never know what each day will bring. We constantly feel as if we are on a never ending roller coaster ride. We WANT to get off, but we have to just keep going because getting off would mean the end of the ride and we aren't ready for that. When a crisis is staring you in the face, you realize how unprepared you are, and you find that no matter what you do, it's ultimately out of your hands. We can try to put on the brakes, and slow down the ride (an exercise in futility)...or we can just hold on tight and go where it takes us. I am scared that this is the beginning of the end, and I try to resist that possibility with all my might. But then I just have to fasten my seatbelt and hope for the best.

Left Behind

2010-08-24T21:11:00.000-07:00

Lately, as I spend time with family members or friends, I find myself feeling as if my husband and I are being left behind. We are the wounded or lame animals in the woods, left alone to meet whatever fate comes our way. Our friends and families move forward into the future, making plans, grabbing opportunities for new endeavors, and getting excited about their hopes and dreams for the future. Maybe it's just that I feel we can't plan for the future...we don't know what things will be like later today, or tomorrow, or this weekend. But we aren't given the option any more of turning down the invitation. I suppose it's just assumed that we'll say no, or won't be able to participate.

I go to some of these events, and leave feeling resentful. I watched my niece open her birthday presents this weekend, and couldn't help but be envious that she doesn't have to worry that this might be one of the last birthdays her father shares with her, when my kids may not get to spend a lot more birthdays with their Dad. I listened as my brother-in-law complained that he might have to take his kids on a daytrip with his parents, and he doesn't really want to. My husband can't walk around the block with the kids without feeling fatigued and exhausted, but he goes anyway and doesn't complain. I recently listened to my cousin tell us that she was a little stressed out planning a 40th birthday party for her sister, while she packs up her apartment to move to a huge, new house they bought. Really? That sounds like something exciting to me.

My best friend recently told a group of us at a party that she and another friend/neighbor are thinking of opening a book store together in our little town. We're all in a book club together and my friend and I love to go to the book store together...but she never told me about this bookstore until they had already planned it. I was clearly left out. I see family members or friends making plans with each other on facebook, and we are rarely included.

It's ironic that when you need companionship, friendship, and fellowship the most, is when people start leaving you out. Another cousin asks me frequently what she can do to help, and I told her a while ago that it would help me if she would just include me sometimes when she's getting together with her sisters, or invite me to hang out once in a while. It's a simple thing...provide some lighthearted company once in a while, give me a break from the stress, share some wine and laughter with me for a few hours. Just ask. Let ME say no, don't just assume I'll say no. Believe it or not, just the fact that someone ASKS for my/our company goes a long way. It's appreciated, it makes us feel included, and we just might say yes.

Please don't leave us behind.

Fear Comes Out as Anger

2010-08-11T07:29:00.000-07:00

Update: Dave's first chemo treatment was postponed until Tuesday, the 17th due to an issue with the insurance company. So, now we wait another week...waiting is what we've become most used to with this saga.

One of the frustrating issues I've had to deal with recently is the moodiness Dave goes through. He is usually a pretty happy-go-lucky guy, but lately he's had days where he's been very critical of me and what I'm doing or not doing "correctly" according to him. Granted, we are both extremely stressed, not only due to this disease constantly hanging over our heads and an unknown future, but to CONSTANT financial struggle. We are living paycheck to paycheck or not even making it to the next paycheck. It's exhausting for both of us. It doesn't help that I'm out of work for the summer...I work for a school system. I've been looking for a full time job with benefits and good money all summer. Dave and I know this will help our financial situation, but there aren't a whole lot of jobs out there.

There is a job opening at one of the schools in town, but it's working for a principal who has a TERRIBLE reputation with her staff and the parents. She is extremely rude, unpleasant, and impossible to please. There have been no internal applicants, and I will not apply. I don't need to add an extremely stressful job to an already extremely stressful situation. Dave "doesn't understand this." He told me that he's worked for obnoxious bosses and why can't I? He wants me to go for it just for the money. To me, it's not worth the money to be in a situation like that.

He recently flew off the handle when I told him that I had gotten a new credit card. We had cut all of ours up a few years ago and we've been paying them off. I wanted a new one to start re-establishing credit. I don't know if/when this disease will take him, and I need some financial things in place ahead of time...for my own peace of mind. He didn't think it was right for me to do that without talking to him about it first. He treated me like his teenage child, rather than his wife, telling me that I lied to him and that he could no longer trust me. I was shocked. I have my own job, and I need credit for future endeavors. I've always been financially responsible. If anyone spends irresponsibly, it's him. He was also offended that I said that "I" need to reestablish "my" credit. Then he said that "he just wants to have everything paid for and taken care of so that if he dies, he leaves us in a better financial situation."

When he said that, a little bell went off in my head. He gets angry at me when I don't jump at every opportunity to make money, or when he thinks I'm doing something that might set us back. He didn't like that I was thinking about my own credit because he felt like I was leaving him out. Clearly...at least now it's clear...he's living with fear. It's not surprising, but I figured he'd just SAY he's scared of what will happen, not get angry at ME for what I'm doing. He told me that he understands my reasoning for not going for this other job, but he wants me to be settled in case he dies. I wish he would just SAY that, instead of putting me down, or getting angry. I don't think he thinks about the stress that I'm under. His disease affects me in a huge way and I'm doing all of this for him and our children and his reactions are offensive.

Fortunately, I've learned from these experiences. When he gets angry about these things, it's because he's scared. I have to stop and ask myself what he's afraid of at that moment when he gets angry. It's not always obvious to me in the heat of the moment. I can only imagine what he worries about, but when it becomes clear to me that he's worried about US, I assure him that we will be okay. We have life insurance that will pay off the house and bills, we will get social security death benefits, and I will be working full time. We will be okay. I know I can't take those fears away from him, and he has every right to be scared and angry, but as a caregiver, it helps to be aware of what REALLY lies underneath that anger. It gives me more patience and compassion for the person I love and what he is dealing with.

Here we go!

2010-08-03T09:26:00.000-07:00

My husband made an appointment today to start his chemotherapy next Tuesday morning! I feel as if we should be buckling our seatbelts and holding on because we have NO IDEA what this ride will be like. Dave is happy to be starting it...he's had a rough few days with pain. He's been getting up during the night for the past couple of nights and has had pain in his back from the hips up. So, hopefully, this chemo will do SOMETHING to help him. I am naturally worried about side effects and how sick he might feel. We were told by the chemo nurse that this drug isn't as harsh as some of the other chemo meds. We expect fatigue...which he has anyway...and constipation is apparently pretty common. We've stocked up on fiber supplements and stool softeners...we know how to party!

So, here we go...the next phase is about to start. What it will bring, we can only imagine. But we've made it through everything so far and I believe this will be no exception. It might not be easy, but if nothing else, it'll be a step down the next road.

But What About US???

2010-07-31T21:05:00.000-07:00

One thing that has surprised me since we've been going through this is the level of selfishness some people have displayed. I'm not talking about acquaintances or friends...I mean FAMILY. We have close family members that not only never call Dave to see how he's feeling, or how he made out at a doctor's appointment or test, but when he talks to them, they want to know why HE hasn't done this or that for THEM. Why hasn't he called? Why hasn't he answered an email? Why aren't we visiting them? Why aren't we including them in our lives by inviting them over or making an effort to go see them?

My theory...other than that they are selfish...is that they are living in the fantasy land known as Denial. They are as frustrated as the rest of us that it took so long to get a diagnosis, but they talks about it as if it was the incompetency of the doctors. They don't understand...or want to understand...the seriousness of this disease and the impact it will have on Dave's life. I've explained to them several times that this is a PROGRESSIVE disease, and that there is no cure. When I told them that the interferon didn't work and that he would be going on chemo, they said, "Oh good. Hopefully, this will take care of it once and for all." Clearly, they're just not getting it...and I don't think they want to.

People just don't get what we're going through...the daily struggle of making ends meet, the pain and fatigue Dave deals with all the time, the fear of the unknown we deal with every day, the constant worry about our kids and how they will do with Dave's disease, the struggle to accept that our lives have completely changed in a way we never wanted or expected. Then there is the ever-present fear of how sick Dave will get, how much he'll suffer, and how long he'll live.

I've told Dave that we just cannot take on the responsibility of catering to other people. We just CAN'T give them the time and attention they want. We have enough on our plates, and there is no more room for their issues. We just can't make them a priority, and we shouldn't have to.

"Have you cried about this yet?"

2010-07-19T20:25:00.000-07:00

I was at a family gathering this weekend when this question was posed to me by someone who really cares a lot about me and my husband. I was really surprised at the question for a couple of reasons.

One, this has been going on for two years. It's been one hell of an emotional roller coaster ride. Our lives have been invaded by a disease so far beyond our control that even tomorrow is a complete unknown. I can't count how many times I've cried about it. I've cried for my husband, my children, and myself...many, many times. I've cried for the life he may lose, the life I won't have, and the lives my children will have to endure through this hell. I think I'd be completely inhuman not to have cried.

Two, I wondered WHY this question would be posed. Do I appear to be unfeeling, unfazed and unaffected by this? I discuss it matter of factly with people who show a sincere interest in what's going on. Nobody understands this disease...they've never even HEARD of it. They wonder why it took so long to get a diagnosis, why the doctors don't know how to treat it, and they want to know how it'll be "cured." So, I explain the disease, and the poor outlook, so people will understand that this is a serious and relentless, poorly understood disease. I don't sugarcoat it. Maybe that makes me appear unemotional. I don't know.

Anyway, I explained to this family member that I have indeed cried many times. BUT, I am not going to become a useless blob of tears every time I talk about it. I HAVE to be strong. I have a sick husband to be strong for, and 3 children whose lives I'm trying to keep as normal as possible. I have to go to work full time to help support us when the day comes that he can no longer work. I have a huge responsibility.

I don't have the time or the desire to let emotions take me over. When I feel emotional, it's a private moment, and I have my moment and move on. I don't want to be judged for how I handle this emotionally, and I got the impression that this person thought I wasn't doing it "normally." It amazes me how many people think I SHOULD be doing this and SHOULD be doing that, when they have NO clue what I'm going through. I'm still figuring out how to go through this. I don't need pressure from other people to do it "right."

On To The Next Treatment

2010-07-13T07:36:00.000-07:00

We received word from the oncologist that Dave's brain is clear! They think that his visual disturbances were due to the Interferon. His optic nerves looked good and his vision has been better since being off the Interferon.

The next treatment will be Vinblastine, once a week. The oncologist had to order some so treatment will possibly start next week. Although, Dave has to work another 3 weeks in order to have enough hours for FMLA. That way if he is sick with the chemo, he can take days off from work and they'll hold his position for him. So, he may wait the 3 weeks before starting treatment.

This has been a bit of a rough week for me...and it's only Tuesday! I dread what this disease will do to Dave. How much deterioration will he go through, and how fast? How much will he suffer? I also dread the idea of spending endless years of my life being a slave to a disease. I feel like a prisoner with no chance of parole. The unknown is so hard to deal with. I want to be here for him, but I want my life, too. I only have one, and I wonder how many decades I'll spend dealing with this. I feel selfish for thinking this way. After all, HE is the one truly suffering. HE is the one who will be sick and maybe not survive. How can I be worried about myself? How can I NOT be? I'm still trying to figure this out.

Boston

2010-07-12T21:36:00.000-07:00

Our first trip to Boston in April 2009, was to see a doctor at Mass General who had authored a paper on Mesenteric Panniculitis. It was a rather uneventful visit...just the usual narrative of events that led us to this doctor's office. He basically thought it sounded like it could be M.P., but he wanted Yale to send up the tissue samples it had from the previous biopsies so that they could be tested and confirmed as M.P. The doctor told us that he wanted to consult with a doctor at Harvard who was very knowledgable on M.P. We came home with, once again, no answers. We had hoped that we would have some sort of game plan for treatment at this point. But, as we have learned time and time again, there is no easy answer in this saga. A few weeks later, after the tissue samples had been tested at Mass General, the doctor called and said that the tissue was fibrotic material and inflammation and that the best course of treatment to start with was prednisone. So, last July, my husband started taking 40 mg. of prednisone a day.

For my husband, prednisone made him feel great! The constant fatigue he felt was replaced by a lot of energy and he was able to actually enjoy life a bit. He stayed on prednisone for several months, and the doctor in Boston did some research and consultations with some other doctors up there. Apparently one of the doctors wanted to do some more testing of the biopsied tissues, so Yale sent some more up there. At this point, things get a little vague simply because I don't recall exact dates, etc. I suppose it doesn't matter.

At some point last fall, we got a call from Dave's oncologist here in CT telling us that a pathologist in Boston had retested his tissue and had a diagnosis. Dave had something called Erdheim-Chester Disease. His oncologist had never heard of it, and it took him several months and lots of consultations and research to convince himself that one of his patient's had such a rare and unusual disease. There were a couple of months of not knowing what to do, and trips back and forth to Boston. I am an internet research junkie, so as soon as I had a name for his disease, I was online reading articles and trying to find information. There was very little out there, but what I found wasn't good news.

You would think that having a diagnosis would make life easier. Not so, with EDC. Last December, they started weaning my husband off of prednisone because they didn't want him on it long term. He spent a month at home, so sick that he barely ever got out of bed. Meanwhile, during that time, I found a doctor on the ECD Global Alliance website, named Dr. Eric Jacobsen. He has treated several ECD patients, so we went back to Boston to meet with him. He suggested Dave start treatment with Interferon. So, at the end of January of this year, he started Interferon, 3 mu, 3xweek.

At this point, I guess I'll give a synopsis of how this disease has affected Dave. He has a large tumor near his left kidney that has encased his left ureter, causing hydronephrosis. The doctor suspects that it may also be compressing his renal artery because Dave has very high blood pressure that isn't being well-controlled by blood pressure meds. His high B.P. is causing his heart to thicken which is a dangerous scenario. The tumor also encases his abdominal aorta. He also has the disease in both femurs, both hips, his sacrum, and his sinuses. After 5 months of Interferon treatment, a pet scan two weeks ago showed that his tumor had grown, and was now starting to encase his right ureter, and had spread to his cervical vertebrae as well. Dave has had some visual disturbances in the past several months, so he had a brain MRI this past Friday evening. We are still awaiting results on that.

He has his good days and his bad days physically. There are days he walks like a 90 year old man, and has enough pain that he needs oxycodone for relief. He gets wicked headaches, nausea, and suffers from almost constant fatigue. There are days he looks pale or even has a yellowish sallow cast to his skin.

This is the basic gist of how we got to diagnosis and where he is physically as of today. Going forward, I will update his condition as necessary, but I really want to concentrate on how this disease affects our life and emotions. I never imagined such a range of emotions, and I think it would be helpful to others to share my emotions, and I also think it would be therapeutic for me to share our story. Any words of advice or support are very welcome.

A false sense of relief

2010-07-11T07:38:00.000-07:00

Okay, so the surgeon who did the biopsy told us that he believed Dave had Mesenteric panniculitis and that he's never seen it cause anyone any problems. We left his office and figured life would just get back to normal after this little speed bump. No harm, no foul. We move on.

That feeling lasted about 5 months until the beginning of June, 2008. I was at work and got a call from Dave saying that he had horrible abdominal pain and that he thought he had kidney stones again. He was heading over to the clinic at the hospital, hoping for some pain relief to help him get through passing the stone. Once again, they did a cat scan and found that the tumor looked as if it had grown. They wanted him to go back to his oncologist to see what he thought. He was told that he should probably have another biopsy because the oncologist was still worried that it could be some type of lymphoma. Dave decided to get an opinion from a different surgeon as the last one had led us to believe that he wouldn't have any problems. This time, the surgeon decided to do needle biopsies of several parts of the tumor. The results came back basically the same as the first time. There was no game plan given because they still weren't sure what it was that he had.

The following several months are a bit of a blur, but I'll try to remember the sequence of events as best I can. Dave went back to the oncologist in the fall of 2008 because he was starting to have unusual symptoms. He was up numerous times during the night to pee...it was at the ridiculous point. During the day, he would suddenly have to pee and would barely make it to the toilet. One night near Christmas, he jumped out of bed and told me to quickly move because he had just wet the bed. He was also having pain in his lower back, and the left side of his abdomen. The oncologist decided to send him to a urologist and a gastroenterologist...he thought he may have a problem with the kidney/ureter due to the tumor being so close to it, and he wanted to make sure there was no blockage of the colon or intestines.

The urologist found that his ureter was being partially compressed and that was causing hydronephrosis (water being held by the kidney causing swelling), which in turn was causing him to urinate so urgently and frequently. The gastroenterologist did a colonoscopy and an endoscopy, but as I recall, he found no problems. At this point, Dave was being sent from doctor to doctor and back, and we were on an emotional rollercoaster. Nobody knew what they were dealing with. Any cancer possibility never panned out.

Around this time, the oncologist ordered a petscan, I believe. I think we asked for one because we thought it would show hotspots and if there was tumor anywhere else. The petscan came back showing hotspots in his hips and spine as well as the tumor. So, Dave had to undergo a bone biopsy. At this point, the doctors were naturally thinking that it HAD to be a cancer, and that it must have spread to his bones. This, of course, was hell for us to hear. The doctors had gone back and forth for over a year on whether this was cancer or not. Now, with these hotspots, cancer was a diagnosis that was back on the table. We were wrecks thinking that IF this was cancer, he now had had it in his body for over a year and it had now metastasized!!! We were seriously scared, and extremely frustrated. We were also in doubt of these doctors and we didn't know what to believe from them.

Meanwhile, the results from the bone biopsy came back and showed exactly the same fibrotic material that the tumor was made up of. Everyone was baffled at this point. Still no cancer cells, and still no diagnosis. The oncologist wanted us to go back to the original surgeon because he felt this was likely some type of cancer/lymphoma. In April of 2009, we went back to see the surgeon. He told us that this HAS to be some type of cancer. He wanted to do another laparascopic biopsy and this time he "was going to keep Dave open on the table and just keep cutting until he had a diagnosis." He was adamant that this was a cancer, and he was uninterested in Dave's opinion, impatient with his questions, and frankly, rude, cocky and obnoxious. We felt VERY uncomfortable with him doing another surgery and really had NO trust in him. We left and never went back. Dave went on to consult with another surgeon, who said he didn't believe another biopsy was necessary since Dave had already had two and they showed the same thing.

I should probably mention that after the first biopsy, we did ask the surgeon if he could remove the tumor. Unfortunately, this is impossible. Every surgeon we've consulted throughout this saga, has told us that the tumor has not only infiltrated whatever available space it can find with its finger-like projections, but that it's being fed by the same blood vessels that feed his intestines, and that it's wrapped around his aorta. We were ultimately told that "no sane surgeon would attempt to remove any of it."

At this point, with nowhere else to go here in CT, and the doctors being baffled by what they were dealing with, the oncologist did some research and suggested that we go to Mass General in Boston to see a doctor there. The oncologist thought that maybe this WAS in fact Mesenteric Panniculitis, and this doctor at Mass General had authored a paper on the disease.

So, in May 2009, off to Boston we went.

First, let's play "catch up"

2010-07-03T19:42:00.000-07:00

My journey started almost 3 years ago in November of 2007. I was home cooking dinner for my husband, Dave, and our 3 kids when he called me from the shower to tell me he had horrible abdominal pain. He thought it was kidney stones...he had had them once before. He decided to go over to the walk-in medical clinic at our local community hospital. Hours later after I had put my kids to bed, the phone rang, and my husband told me he did, in fact, have a kidney stone. His next words, muttered in only a few seconds, have changed the course of our lives in such a profound way that I still can't believe that this is OUR life. "They did a cat scan and found a tumor. They think it might be lymphoma." Those are words you don't expect to hear from your 36 year old husband, and they are words that nobody should ever have to hear. My children, ages 9, 7 and 5, at the time, were upstairs blissfully asleep, as the lives of me and Dave started to crumble around us.

The next weeks were spent in a fog. I had just returned to the workforce after 9 years at home with my children, and we had just gutted our kitchen so we could remodel, and the holidays were coming. I was already dealing with change...a new part-time job, my kitchen was torn apart, and now my husband was sick. The doctors wanted him to have a biopsy of the tumor as soon as possible so that treatment could begin. Dave met with an oncologist who had treated my father for Lymphoma a couple of years earlier, and he thought it was likely Lymphoma, and he wanted a biopsy. About 2 weeks before Christmas, he was scheduled for a laparoscopic biopsy. As I waited in the waiting room for him to be finished, the surgeon came out and told me his tumor was about the size of a softball and that he had taken several pieces to be tested. We would have results in a few days.

About a week later, we were told that it was not lymphoma, that it was a lot of inflammatory material. The surgeon wanted to do a little research and speak to a few colleagues, and the plan was that we would meet with him after the holidays. So, after New Year's, we met with the surgeon in his office. He told us that he thought Dave had a disease called Mesenteric Panniculitis. This was good news! He said that he'd never seen it cause anyone any problems, and that it didn't need to be treated, just monitored. We left his office feeling a sense of relief and ready to move on from this apparently false scare. Life went back to normal for while, but didn't stay that way for long.

This blog is my story about our journey to diagnosis, treatment attempts, and what it's like to live with an ill spouse. It will also be about the experience I've had dealing with his illness, and all the emotions, fears, and the huge unknown that a rare illness forced into my life. I've learned things about myself and other people in my life that have surprised me, disappointed me, educated me, and made me a stronger person. I've learned how to have hope even in the darkest of times. My wish is that this blog will help other caregivers of spouses with illness know that they aren't alone and that those of us who have been in this position really do understand what it's like to go on this journey.