I miss my husband

That's all...

I miss my life

I used to have a live; a real one with some promise. I was an attorney and had dreams for the future of my career. I planned to change the world.

And then it all fell apart. Even when things were rough, there was always hope that the future would hold something better.

Now I've traded in suits and courtrooms for jeans and doctors' offices. My future consists of making it through one more day. And some days that can be a real challenge. I
used to have a man who adored me and now I'm alone every night.

I miss my old life. I miss my husband. I miss my career. I miss my health. I miss my future.

Back pain

For the past two weeks I've has pretty intense back pain. I've had this type of lower back pain before, but none of the "usual" fixes seem to be working. Of course, being the good patient I am, I reported this to my oncologist. And because he is the thorough oncologist that he is, he sent me for an MRI. I had the scan today and fortunately the results do not show cancer. Whew...

But the pain is still here and I need to figure out how to get rid of this pain. I have a massage tomorrow and I will get a copy of the MRI report on Monday and start the search for back pain relief. I really hope I can find a relatively easy way to get this episode under control so that I can enjoy my chemo-free week.

Pain has got to be one of the hardest issues I've dealt with on this cancer journey. Pain makes me crazy and makes everything else seem so much worse. I have been feeling good and so this pain thing is cramping my style. I just want a bit of relief so that I can enjoy my days. Is that too much to ask?

His arms

Today I watched a couple sitting across the room from me in the waiting room at the cancer institute. Like many who wait there, they looked tired, perhaps from a long day of tests and waiting for results. It was the woman who had cancer. You could see it in the wrinkles on her face and the weariness in her eyes. At first I thought that the man with her might be her son as he looked considerably younger than she. But all thoughts of that retreated when I saw the tenderness with which he held her. He had his arm draped again the back of the sofa, drawing her into his protective embrace. And she had a peaceful smile on her face as she closed her eyes and rested her head upon his shoulder. One that you might expect to see while relaxing on a sunny beach or when listening to moving music, but certain not in an oncologist's waiting room. I couldn't help but smile at them, thankful that the woman had at least those seeming moments of peace or those strong arms around her. But I also couldn't help feeling sad as I sat in the waiting room alone.

I was once a half of a couple like that. One part of a whole. I fit perfectly in the crook of his arm, even with my largeness compared to his sinewy frame. That crook was my safe place. A place that I could smile even while curled up next to him in a hospital bed. Our entwined fingers created a bond that held us together and would not be broken, except by the sneaky shadow of death. Together we were a force to be reckoned with, a firm foundation, with one of us being the stronger one when the other one needed to be vulnerable. We were a safe haven for each other, a home like no other, where love always won in the end. Well, until love was no longer enough to keep death from coming in, when all of the bargains and extensions had been traded in, when there was nothing left to hold but a lifeless hand that was no longer my husband.

Some nights when I can't sleep I imagine that he is there holding me. I recall the way that he liked to drape his right leg over my body and snuggle his head against my shoulder. I picture his hand cupping my cheek and his lips gently kissing away tears as they ran down my face. I try to replicate the way I held him in his hospital bed after I decided to take him off of life support. I close my eyes as tightly as I can abs try to strike a deal with God, with the Universe, with anyone that will listen. I'll do anything I plead, anything, to have him back. I tell myself that if I believe hard enough, that if I tell myself it will be so and believe it, I will wake up and find him there. But that doesn't happen. Maybe because it is simply impossible or maybe because I don't believe it enough. In the end it doesn't matter. He is gone, and at least for now, I'm still here. I admit it feels like a cruel joke sometimes--the love of my life is taken away and I am told that I must continue living and eventually move forward. Then only 5 months into the baby steps forward, I am diagnosed with cancer. At first it looked manageable--so I would just have to endure this with out him, but eventually I would move forward, have a new life, start over. Only to have that reality ripped out from under me with a stage IV diagnosis and decreasingly likelihood that my cancer is going to be receptive to anything we throw at it. So the story looks like it may end like this: girl loses love of her live, girl suffers through 2 years of cancer treatment without him. Then girl dies. Why couldn't someone have had mercy on me and just let me die with him so that I did not have to endure this suffering?

I don't know, so I do all that I know how to do (stolen from Sleepless in Seattle), get out of bed every morning [and] breath in and out all day...

If I die young

I have had this song in my head all day for the last couple of days.  I woke up with it in my head and then saw friends on Facebook talking about it.  It is sad, but beautiful to me for some reason.  It hits really close to home with both Gess and my prognosis.

Even though I knew that Gess had CF and would likely not make it to be an old man, I still never believed that he would die so young.  I wasn't ready for it and it broke my heart.  My heart is still broken. I think that it is healing bit by bit, but it still feels shattered.  I guess in some ways my prognosis gives me solace because I will be with him soon.  But at the same time, it is hard to think of what might have been.

I have given up trying to understand why all of this has happened.  It will never make sense to me and I guess that is okay.  It has to be.  I am focusing on today and trying to enjoy the days I have left.  It it is 1 or 10 or 20 years worth.

I love you Gess.

More bad news

I came home from vacation (more about that later) and jumped right back into cancer land. The day after I got back I had a scan to see if the chemo was working. I had an appointment with my oncologist a few hours later to get the results. Unfortunately my tumors continued to grow during the last rounds of chemo. This means that my cancer has grown through 5 different chemo cocktails! I have always been on overachiever, but this is one area where I wish I wasn't. My oncologist recommended that I try another type of chemo and I decided to go along with the recommendation (as long as the side effects are manageable). He said that after this type he is not as enthusiastic about recommending more chemo. So we asked the obvious question--what is the prognosis if this doesn't work. The verdict--less than a year. I'm still trying to remain optimistic about the new chemo, but also trying to wrap my head around the prognosis. I thought that Gess dying was the worst thing that could happen, but getting cancer 5 months later and having to go through this without him is much worse. I'm trying to make the most of the time I have, but honestly I'm not sure that I'm doing a very good job. I don't really know how to live in this limbo land. I've always gotten through rough times by looking forward to the future, but now I can't do that. I'm not sure what to do anymore.

18 months

It's been 18 months since Gessner died and honestly I thought that it would be easier by now. I'm amazed at the number of times I still think that I need to call him or I wake up and reach for him. The last couple of weeks have been particularly difficult--I cry myself to sleep almost every night. I think that part of it is because I need him so much right now. My friends are great, but they can't take his place. I'm often reminded of how lucky I was to have Gess and to have experienced the type of love that we did, but on these nights that is little consultation. In fact, it seems to make it worse. All I want right now is to curl up in his arms and let him take care of me. Instead I am left to take care of myself--and these days that is difficult. Everything is taking quite a toll on me.

Bench

Both Gess and I were against having a traditional cemetery plot, so he was cremated and his ashes have been in my closet ever since. I don't quite know what to do with them, but I'm not too worried about it. I figure that when the time is right, I will know it and I'll act then.

My best friend told me that one of the things that upset her when her foster parents died was that there was no place for her to go to "visit" them. I thought a lot about that and there were times when I thought that it would be nice to have a place to go for Gess too. After I got my cancer diagnosis, I decided that I wanted to do something about that for

my friend so that she will have a place to go to visit me and I didn't want to leave that to her or anyone else.

The city of Seattle will l let people buy benches in city parks and I bought one. The park I chose is one that is close to us and the last park that we visited together. He also took his mother there several times in the months before his death and she said that he seemed so there. It is a goregous park on the beach--Golden Garden Park in Ballard.

(the City doesn't allow "memorials" so the bench is dedicated to us).

Today was Gess's 35th birthday and also my 1 year cancer-versary. My good friend Sandy was in town to be with me and asked if I could show her the location. I wasn't exactly certain, but got out the map and we went looking for it. To my surprise, the bench was up! It really is beautiful bench and I look forward to spending time there while I can.

(view from the bench)

Happy Birthday Gessner!

New Tumors :(

I got the results from my PET Scan today and they found more tumors. They are in my breast bone. The bad news--more tumors. The good news, is that the doctors think that this is causing my horrible pain and they think that it can be fixed with radiation. I see the radiation oncologist tomorrow to get everything all set up. I am so glad that my team moves quickly all of this and takes my pain very seriously. I'm so excited about the prospect of being out of pain, but nervous about the whole process. I'll know a lot more tomorrow.

Update

I haven't updated in awhile, so here's a long over due one!

I've started a new chemo about a month ago and I we are waiting to see if it will work. So far it has been okay, but it makes me extremely tired. So, I am sleeping a lot.

The biggest issue going on right now is pain in my chest/lungs. At first it was only on my left side, which we attributed to the tumors in my lungs causing inflammation. But about a week ago, the pain moved to the right side too and has been excruciating. I'm on pain medication, but the pain is still nearly unbearable. This is certainly no way to live.

On Friday I had a PET Scan to see if we could locate a cause of the pain. I just heard back from my oncologist and he thinks that they have identified the cause--I have a couple of small tumors in my breast bone. He said that this would explain the pain and the movement of the pain into the right side. I am glad that a likely cause of the pain has been identified, because it means that we can treat it. The treatment will be with radiation. I am going to call my radiation oncologist tomorrow morning and will hopefully get that ball rolling ASAP. Radiation was pretty painful and not at all pleasant the last time, so I am not looking forward to the treatment, but I am excited that there may be relief from the pain. I leave for vacation in 24 days, so hopefully most of this can be resolved by then!

I will start my third cycle of the new chemo next Thursday. At some point, probably after my trip, we will rescan and see if the tumors are responding to the chemo. I can't really think about that right now. I just need to wait and hope for the best.

Chemo

I had a CT Scan to check the status of my tumors and to see if the chemo is working. The good news is that there are no new tumors showing up. The bad news is that the tumors I have are slightly bigger than they were a month ago, so the chemo is not working at least not well enough). So...moving on to the next chemo. I start the new one next Thursday.

CT Scan

In just over 12 hours I will be having a CT Scan to check the status of my cancer. The scan will be of my lungs, pelvis, and some other body part that I can't remember. The scans themselves are not too bad, I just have to lay there and stay still, but the waiting for the result is torture. I will see my oncologist on Wed. afternoon instead of waiting for a phone call, but that means waiting longer for the results. **sigh**

The Good, the Bad, and The Ugly

Today has certainly been a mixed bag.

For the good: it was a beautiful day in Seattle. I met up with a friend and got to meet his new pug Oscar. So cute! Then after that I met up with another friend and we explored a neighborhood I rarely visit, looking a cute shops, walking down the street, enjoying the weather, and ending with coffee and treats at Starbucks. It was a nice ending to my chemo day, which brings me to the bad:

Chemo days are by their nature bad. Pushing good ol' fashion poison through the veins is just never a good time. I got up early (too early for me) to go to chemo. Everything went fine--my counts looks good, I got my dose, etc. I have one more dose (next Thursday for this round). Then I'll have another scan to see if the chemo is working. I hate getting scans and the anxiety of waiting to hear the results. When I see my oncologist next week I'll ask about the possible outcomes and what we will do with each.

Then I went to cancer support group. I've been going to this group for 2 weeks now, and I don't think that it's for me. I committed to 3 weeks, so I'll go again next week, but I don't know if I'll continue. I'm just not sure it is for me.

And for the ugly: It's 3:30 am and I can't sleep. Thank you very much chemo and the pre-treatment steroids. I'm alone--an even bigger thank you to CF! I'm exhausted and all I want to do is sleep. I've tried. I took my sleeping pill. I did my sleep meditation. I waited. Nothing.

Right now I have the urge to deep clean my carpets, but I'm not sure that my downstairs neighbors would welcome that. I can't be sure that they can hear me (I rarely hear anything from my upstairs neighbors), but I don't want to risk it. So, I'm stuck with more quiet activities like blogging and shopping online.

The Last Year

I have been exhausted--physically, mentally, and emotionally--lately. I am struggling because I am so used to be able to do "everything" and find that now it takes a lot of effort just to get out of bed. For this, I beat myself up. I know that I shouldn't, but it is so hard for me to be gentle and forgiving with myself. I'm working on it, but it goes against my nature. I want to be Super Woman.

Yesterday when I was talking to a friend I made a statement about all that my body has been through this past year and how, considering that, it makes sense that I am tired. After the conversation, I really let that sink in. If I just look at the physical things that have happened in the past year, I am actually doing really well. Not to mention, the emotional and mental stresses. In the past year this is what has happened:

March 16th, 2011: Found a painful lump in my breast when I bumped into something.

March 17: Called to report lump, made appointment for when I returned from vacation.

March 31: Examination by nurse, confirming lump and referring me for an ultrasound

April 8: Mammogram and ultrasound. Told that it was likely a cyst and was scheduled for needle aspiration

April 12: Attempted aspiration-finding no fluid. Biopsy of lump taken

April 13: Diagnosed with breast cancer

April 18: Consultation with breast surgeon, reviewed pathology, referred to oncologist

April 19: Appointment with genetic counselor

April 26: Appointment with medical oncologist

April 28: Echocardiogram

May 2: PET Scan

May 3: Surgery to place port-a-cath

May 4: Start of hormone shots for egg harvest

May 4-16: Daily shots, blood draws and ultrasounds every other day

May 9: Biopsy

May 16: Egg retrieval

May 19: Bone Scan

May 23: Chemo (Taxol and study drug)

May 31: Chemo (Taxol and study drug)

June 6: Chemo (Taxol and study drug)

June 9: Scans and biopsy

June 13: Echo

June 13: Chemo (AC #1)

June 27: Chemo (AC #2)

July 11: Chemo (AC#3)

July 14: MRI (Brain)

July 21: Consult with breast surgeon

July 25: Chemo (AC #4)

August 16: Bilateral Mastectomy

September 2: Bone Scan

September 9: MRI

October 6: Radiation planning

October 11-November 30: Radiation (5 days per week), total of 35 treatments. Plus chemo (oral xeloda).

Nov 10: Chemo (5FU)

Nov 17: Chemo (5FU)

Nov 23: Chemo cancelled because counts too low

Jan 20: MRI

Jan 30: PET, CT, MRI

Feb 2: Chemo (navelbine)

Feb 9: Chemo (navelbine)

Feb 16: Chemo (navelbine)

Feb 27: CT Scan

Mar 1: Chemo (navelbine)

This list does not include several (sometimes 3 times per week) physical therapy appointments, blood draws, appointments to deal with fluid post-surgery, or mental health appointments. My oncologist said that my body hasn't had time to recover from the first set of chemo. And yet, the chemo continues.

I need to remember this and be more forgiving of myself. But how does one do that? How does one accept that life is no longer what you thought it would be and that you may be forever changed and unable to do what you used to do? My heart does not want to accept this. But my body doesn't seem to be giving me much of a choice right now.

Layers of Grief

There are so many layers of grief that I am currently wading through. Not just the obvious grief over the loss of my husband, but loss related to my cancer diagnosis, my career, and the dreams that I had for my future.

The grief over my husband is still fresh and there is a lot that I still have to work through. It has been 16 months since he died, but in a lot of ways it seems like it was just yesterday. There are so many things about him that I miss. I miss the way that he used to tuck strands of my hair behind my ear, how he always wanted to hold hands, how he would leave love notes for me around the house, and how we would always call just to check in on me. I met him when I was 19 and we had a connection that many people never find. We loved each other genuinely and fully. Our relationship was not perfect, we were both strong-willed and opinionated and we had some epic fights. But what we had was real.

And then it was gone. We knew that he would likely die at a younger age. He had cystic fibrosis and his health started to go downhill. But even with that knowledge, his death was still a shock--in some ways, it still is. I still wake up some mornings and reach out to touch him only to be reminded that he is gone. I still want to call him and tell him about something that happened. This doesn't happen as often as before, but it still does, and each time it's like the wound is reopened.

I'm not sure when I am going to be "done" with this grief process, but it feels like that is far off. So much has happened in the past 16 months that has required my attention that I feel like grieving has been postponed to some extent. In other ways, the grief has been accentuated by what is going on. Along with the loss of the person, you lose the life that you had imagined together. Although Gess had CF, we still had hope that he would beat the odds and we would have a long life together. We had dreams of trips, children, a house, and growing old together. We had so many things that we wanted to do together and with his death, all of those dreams died too.

The cancer diagnosis--especially the stage IV diagnosis--has added another big blow. I am grieving the loss of my health and my future health. There were so many things that I wanted to do and now those things aren't possible. I even went through the expense and difficult of having my eggs harvested in case I could try to have children again someday. Now, I will never be cured of this cancer and will never have children. I will never be a mother. I will never feel a baby kick inside me. At the time I harvested the eggs because I couldn't handle another loss, but that loss is real now.

I also have had big physrical losses. DDs to be exact. Nearly 10 pounds worth of flesh amputated from my body. I've heard people say "they 're just boobs," but clearly those people have never lost theirs. I also lost my hair, which was a big part of my physical identity. I feel mutilated and deformed. I feel ugly. And the one person who loved me no matter what is gone. Gess loved me and he would have loved me even without my boobs. I thought that I would get reconstruction and at least get a nice new set out of this cancer crap. But stage IV has changed that. If I'm going to die soon, it doesn't make sense to go through the numerous difficult surgeries. So, I'll live out the rest of my life without breasts.

I can't believe that I am going to die in the next few years. I will be dead. Gone. Just a memory. And I worry that I will have not left any sort of legacy. I grieve over what I could have done and how I could have made a difference.

This cancer diagnosis has also ruined my chances of having a successful career. I planned to take just a bit of time off to deal with all of these issues and then make a career move--possibly teaching or getting a PhD. But now those doors are closed. I will likely never practice law again. That is a sobering thought. I worked hard to get my law degree and to make my place in the profession. I care about the law and had dreams of making a difference and helping others. Now those dreams are gone. All of the hard work down the drain.

And these are just some of the issues that I am trying to navigate. Some days, like today, the grief is overwhelming. On other days, I feel like I can manage. But the days are hard and I feel like I can't get my head above water for any significant period of time.

Bucket List

Well, I'm working on my bucket list...I got to cross "San Fran" off recently. What else should I add?

• Visit France
• Visit Hawaii
• Take a girls' trip
• Writing my memoir
• Write a novel
• Finish a marathon
• Quilt for Grandma
• Record song for grandma
• Swim for 1 mile
• Go white water rafting
• Learn to surf
• See the grand canyon
• Alaskan Cruise
• Learn French
• Get a CF Patient Advisory Group started at UW

I realize that some of these are pretty physical so I am not sure if they are actually doable for me, but I'm going to keep them there and see! Hawaii and a girls' trip are on the horizon.

Pain pain go away

So my newest issue is pain. I've been having a lot of pain in my left shoulder/mid-back. This has been going on for awhile and I've been working with my physical therapist and massage therapist to address the issue. Well, the pain has been getting increasingly worse. My chest started to hurt too and then the pain seemed to radiate from my the front to the back, with it coming from my left lung. The pain kept getting worse and worse, to the point where I had to take pain medication just to get comfortable enough to try to sleep.

Finally I decided that I needed to call, because the pain couldn't wait for my Thursday chemo appointment. I called my PT, thinking that it might be a muscular issue. After describing the pain, she suggested that I call my oncologist so I called his office and talked to a nurse. She consulted with him and asked me to come in. I cancelled a voice lesson (that's a whole other story) and went in for the appointment. Dr. K said that it could be caused by many things and the pain seemed to be coming from the general area of my lung tumors. So, he sent me to get a CT scan. He order the scan to look at my heart too and rule out a pulmonary embolism. The waiting was torture, but I eventually heard back from Dr. K--the CT really didn't show anything. The tumors looked similar, with one looking slightly better and another looking worse, but nothing significant to tell us anything. So, the prescription was to wait and see and continue to take pain meds as needed.

The next day I saw my therapist and explained what had happened. She said that anxiety could also be causing the pain or contributing to it. So she suggested some relaxation exercises and visualization exercises. I'll try these because I definitely have issue with stress and anxiety.

Then, today I went to my rolfing therapist. Her thought is that the pain could be from my very, very tight chest muscles. So, she spent an hour working on that area and ouch! The area is still hurting, but I do feel like I can breath a bit easier.

I think that there is still something wrong and I'm not sure how we are going to figure it out, but I'll keep trying things to try to get this pain under control. I am taking the pain medications because my body does not need that stress.

I see Dr. K tomorrow for chemo, so we will definitely discuss the pain and hopefully come up with a plan for managing it.

I am also going to talk to him about the results of the CT Scan. I am glad that there wasn't a lot of new growth, but it is also discouraging that there wasn't significant shrinkage. I've only done 1 cycle (3 total infusions) and our original plan was to rescan after 2 cycles. I'm going to ask if that plan will change at all based on this new scan.

Nothing deep here today, just a report about how I'm doing.

Accepting Unknowing

I cannot understand why I have cancer. I don't understand why my husband died. I don't understand why there are millions of people starving in this world. I don't know why evil people are allowed to prosper while good people suffer. I don't understand this and that is hard for me. I hate to hear "everything happens for a reason" because it is so hard to see what that reason could possibly be. These things simply do not make sense. And I have to accept that I am not going to know and try to find some sort of peace that with unknowing.

I think. A lot. I think about the same things over and over. I take not knowing as a challenge. I do research. I make charts and spreadsheets. I search for the answers. This is the way that I work. And in a lot of ways it has served me well. This way of thinking made me a good student and made me a good lawyer. But it doesn't make me a good widow or a good cancer patient. I have searched and search for the "answers" and they are not out there. So I know that I need to find a way to sit with this unknowing and not obsess about trying to figure out what I did wrong or how I could have done things differently to get a different result. I need to remind myself that I did not give my husband CF. I did not make him die. I could not save him. I did everything that I could to be a good wife and give him a good life while he was here. I did what I could and that has to be enough. I have to remind myself of this whenever I doubt myself.

I must remind myself that I cannot understand why this happened and that there is no way that I can. I have to remind myself that it is okay if I don't know. It happened. Maybe there is some sort of knowing that I will have after death, but for now I have to accept that I don't know. This is not going to be easy for me and it will likely require daily attention on my part. But I am going to try to embrace the unknowing and stop fighting against it. Maybe that will help give my mind a rest and let me have a little more peace surrounding the issue.

Dark Days

The last few weeks have been difficult. I feel like I am slipping into a depression and that always scares me. I am seeing a therapist and working on it, but it is still so very hard. It is hard because I have so much grief that I am still processing or haven't even begun to process. Losing a spouse is not easy and even under the best of circumstances, the grief process is long and difficult. My cancer diagnosis has thrown a wrench into all of that. There are days when I struggle to get out of bed. Fortunately, Beauty needs to go outside a few times a day so I have to get up and get outside for a least a little bit. If it wasn't for her, I think that I might really struggle to get out of bed.

I miss Gessner so much these days and it seems like I am encountering more triggers. I still can't believe that he is gone. There are still mornings when I wake up and reach to the other side of the bed, only to be reminded that he is not there. Those are horrible mornings. Last night I had a rare happy dream where I just saw his smiling face. It was just what I needed after some very rough days.

I think a lot about where he is and what happens after a person dies. I grew up believing in heaven and being told that everyone will have a mansion in the sky. Now, it is so much more difficult to picture that. There are days that I definitely feel Gess's presence. Whether this is real, or just my imagination giving me what I need I don't know. But it is comforting. I wish that I felt him more. I wish that he could be here to hold me. That is something that I miss the most--having someone to just wrap his arms around me and pet my hair. In those times, it felt like no matter what, everything would be alright as long as we were together. Somehow having someone who loves you unconditionally and with so much passion, makes everything else seem more doable. Now, on those lonely nights, I am alone and there is no one to hold me and tell me that it will be alright. There is no one that loves me the way that Gess did and that leaves a huge hole in my heart.

And these are dangerous times. When I have a bad night and feel alone, I spiral to a place where I believe that I am unloveable and no matter what my "logical" brain tells me, I cannot accept it on an emotional level. On an emotional level I feel like I am hurting people more than I am helping them I worry that I am just hurting people by being here and my instinct is to run away. I know that is not the answer and that it would in fact hurt my loved ones more, but there are times when the pain is so severe that running seeming like the only option.

This process is exhausting and I am worn out. I take it one breath at a time and am some how holding it together--if only by a very thin string. I think that I might need some duct take soon :)

Four

It's been a long time since I have updated my blog, mostly because I don't have any good news to report, only more bad. Usually I write to help process through the emotions, but have avoided writing for weeks, even though I actually have a lot to say. I think that it is a protective measure--the mind and body can only handle so much at one time. The mind regulates the amount of pain that it can take at one time to protect itself. So I think that my lack of writing has been, at least in part, self-preservation.

Since I was first diagnosed in April 2011, there was a suspicious spot on one of my ribs. I had been skiing--and falling a lot--just a few weeks before diagnosis and the spot was consistent with a bruise. The location of the spot made it difficult to biospy and the treatment plan would not change regardless of the results, so we went ahead with treatment and hoped that it was a bruise. After lots of chemo an my bilateral mastetcomy the spot on the rib was still there, ruling out the bruise theory. Still it was a bit of a mystery because the spot hadn't changed much during the chemo. The spot looked slightly brighter on the images, but not so much that it was conclusive. So, we decided to irradiate the area while doing the radiation to my chest wall and lymph nodes. Thanks to a fancy new radiation machine and a great radiation oncologist, they were able to do this without damaging my heart and with very little impact on my left lung.

I did a total of 38 radiation treatments, along with more chemo. I finished that round a treatment at the end of Novembr and took a much needed break from treatment. The radiation really wore me out and did a number on my skin. I try not to take pain medication, but by the end of radation I need narcotics to ease the pain.

Thankfully my skin healed relatively quickly after the stop of radiation and chemo--it's amazing what happens when they stop pumping you full of poison and burning you with radiation! Unfortunately, you have to wait for awhile to let the body recovery from the radiation to rescan and see if it worked. My oncologist decided that about 6 weeks was a good time to rescan. So I took off and visited my dad in Florida and Gess's sister, niece, mom, and grandma in Colorado. The trips were great and it was a good way to keep my mind off the cancer. The Florida sun was also incredible for my mood. I loved spending time at the beach and just relaxing.

When I got back from vacation I saw my oncologist who said that my blood counts looked good and thought that I could take another month or so off to let my body get even stronger and recover more fully from the barage of treatment I had been through. My oncologist explained to me that my body had not had a chance to recover from even the first round of chemotherapy because of the continual course of treatment. Needless to say, I was pretty excited. A month of life without treatment sounds like heaven! The only caveat was that I need to have an MRI to check the status of the spot on the rib.

I had my MRI on January 20th, a Friday morning. I felt guardly optimistic and was nearly giddy about my continued "cancer vacation." I also had my first post-chemo haircut...meaning I had enough hair to actually have a cut. I saw a great stylist who cleaned up my curls and also gave me a little sassy red. I walked out of the stylist's chair feeling good. As I walked into the changing room to get ready to leave, I checked my phone to see a message from my oncologist on my phone. I checked it and my heart sank. My oncologist apologized for leaving the news on my voicemail, but knew that I was anxious to get the MRI results and he had to step out of the office. The news was bad--the MRI showed a spot on my lung. It could be an infection, he cautioned. But it could also be the cancer spreading. The spot on the rib also looked somewhat improved, again, not good news but still inconclusive because of the radiation side-effects. I immediately called my oncologist back and talked to him briefly. He said that I needed a needle biopsy of the spot on my lung and we scheduled that for the following week.

The next week the full MRI report was in and I saw a copy when I had a follow-up with my radiation oncologist. He also showed me the MRI films and I saw the tumors. There was not just one as was noted with the radiologist's preliminary telephone report, but at least five--four in the left lung, one in the right lung. I asked my radiation oncologist if an infection coiuld present with this many spots and with them in both lungs. He said that it was possible, but not extremely likley. I could tell from his face that he thought that it was cancer. My friend Sandy thought it was cancer too. She arranged to be at my next oncology appointment.

I had the lung biopsy--not a fun procedure--and then played the waiting game yet again. I knew thta my oncologist would call immediately if the pathology came back negative, so by the time I walked into his office, I knew that the result was positive and he immediately confirmed my intuition. The cancer had spread to my lungs. It is stage IV. The oncologist also said that rib lesion was cancer--so I was stage IV from the beginning.

The statistics for stage IV breast cancer are not good. The median survival is about 2 years. And I've already spent 10 of those months, meaning I could have about 14 months left. The range for survival is wide, however, with people living longer or shorter. My oncologist said that there is a chance that I could live for awhile with the disease if we find the right chemo. But the reality is that the prognosis is not good. My cancer has proven to be very aggressive and has continued to grow despite aggressive chemo treatment. There are still some more drugs that we can try, but there is a good chance that they won't work. I'm not giving up hope, but I am also realistic about my options. I do not want to live the rest of my life being sick from the chemo. I want to enjoy the time that I have left with my loved ones, but I'm also a fighter.

For now that means that I am going through chemo. It does make me sick, but it is bearable for now. I had 3 weeks of treatment and now have one week off. Next week I start another cycle. After that I will have another scan to see if the chemo has worked.

New Painting

Having one of those days

Maybe it is because the first part of my vacation is over or because I have been penting up my emotions, but I'm having a rough afternoon and feel like I'm going to start crying at any moment. I'm pretty sure that is not what the couple in 7b and c had in mind for their trip to LA. But there is a kid crying behind me, so maybe I'll just blend in.

Anyway, Florida was great. I really enjoyed spending time with Tom and exploring south Florida. He kept me pretty busy, but also let me sleep in, which is pretty important to me these days. Physically I feel better. I really think that being exposed to all of the sun is good for me.

While I was in Florida my wedding anniversary passed. I cried a little, but mostly tried to stay distracted. It's hard though, if I sit still for too long, my mind starts to race and it is filled with lots of sadness, anxiety, and fear. I have a lot on my mind and just a lot of issues up in the air.

I've tried to be okay with the idea of taking care of myself as my "job," but on many days that is not working. I am tired of my life being on hold, but also terrified of having to make big decisions. Sometimes I think that I could have done all of this if Gess was by my side, but he isn't. And I'm not sure that I can do this, or even if I want to. Of course I'll do what I always do: put on my big girl panties and go through the motions. I'll do what is expected of me and what I should do. And I'll try to do it without completely losing it. But for right now, on this bumpy airplane ride I am going to feel sad and wallow.

Florida For Christmas

And it's about 80 degrees :)

I've been thinking a lot about all of the losses I've experienced lately and it's pretty overwhelming. But today I was reminded that I survived this last year. I survived. It wasn't pretty, but I made it. There were times when I was sure that the pain of grief would kill me, but it didn't. I made it through my diagnosis and 7 months of treatment. I'm not completely on the other side of either of these journeys, but I am on that road.

I had a great time today laughing with friends. I've made new friends this year and for that I am extremely grateful. My friends are who are going to help get me through this.

I know that the next few weeks will be difficult with Christmas, New Years, and our anniversary, but I also know that I can get through it. Which is sometimes enough.

Photo Card

Retro Ornaments Red Christmas

Click here to browse our Christmas photo card designs.

View the entire collection of cards.

Finished with Radiation

I finished radiation today and I know that I should be happy, no ecstatic, that I made it through another treatment step. But today has been one of the worst days that I've had in awhile. I cried through my entire treatment, wishing so much that my husband was there with me. That I didn't have to make that trek to treatment everyday alone or at least that I didn't have to sit in an empty apartment every night. I do have amazing friends and do not want to trivialize the great support that they have been, but at the end of the day I there is a loneliness in my soul that I can't shake. I ache for Gessner, for his touch, for his voice, for his love. He loved me so much and I just want that back. No matter how hard things got, we always had each other and our love. I know that it is cliche, but at the end of the day, love is enough sometimes.

"They" say that grieving takes at least a year. A year is a nice round time and lets you go through every season and most major events. It is logical that if you get through the first year of grief (or anything really), that you will be okay. But I don't feel okay. Right now I don't feel better than I did this time last year. Right now I want to bury my head in the blankets and scream. I want my husband to come back and anything besides him coming back is not an acceptable existence for me. I don't want this life. I don't want to go through another year like this without him. I don't want to be without him. I am tired of trying to "make the most of it" and hope that it will get better. I've had a year of it and I can say, that it hasn't gotten better. My life is not better than it was a year ago. It's actually worse. On top of not having my husband, I have cancer. I have no breasts. My body is mutilated and ugly. I don't have a job and I feel like my career is slipping away. I have lost friends. And I can't move forward because I am stuck in cancer-treatment.

I am so tired of being this person who is sad and complaining. I don't want to be negative or whiny, but I feel like I am at a breaking point where I cannot take any more of this. Or that I don't want to. It is a like a business doing a cost-benefit analysis. Right now the costs are outweighing the benefits of life. And the worst part about it is I feel so helpless to change anything. I know old saying (and clever flow chart) about "if you are unhappy, make a different choice," but I don't know how to do that (and I'm really not looking for advice on how to do it because there isn't anything that I haven't thought of...I'm just using my blog to get this stuff out of my head).

I hope that most of this is just because I do not feel good at all. I'm at the end of a treatment cycle, which means that I am about as beat up as I am going to get. They are giving me a break so that my body can recover. I think that I might have a bug or my body might be trying to fight one or something. As my friend said today, I've heard that cancer and cancer treatment make you feel like shit. Yep, it can.

The Pressure to Be Positive

In our society there is an incredible pressure to have a positive attitude, especially for people who are dealing with illness or loss. I can't count the number of time that news of my loss or my health have been followed by the words "but at least..." and then some attempt to put a silver lining on my situation. Some of them have been incredibly insensitive, like "at least you don't have kids" or "at least you are young so you can start over" and all of them have the effect of trivializing the pain I am going through. I know that people do not intend to be harmful, in fact, they likely think that their platitudes are helpful, but that doesn't mean that they are not hurtful. One girl told me that I should watch The Secret and it would change my life. I've read the book and so I guess her message to me was that if I believed that I didn't have cancer, I wouldn't or that I attracted cancer to myself. Let's not even think about what The Secret's answer would be to Gess's death.

I agree that it is harmful to have a negative attitude all of the time. For illnesses and cancer particularly, there is evidence that feelings of hopelessness correlate with poorer outcomes. I am a big proponent for trying to find hope in life or at least for the day, especially when life is hard. But, that doesn't mean that you have to be happy and positive all of the time. Life is not all positive and pretending that it is does not make it so.

I am a widow and I have cancer. That sucks. Period. No way around it. And I should not feel compelled to act positive about it all of the time. In fact, if I start acting positive all of the time, you should be concerned. At the same time, I can have good days (and yes, I've had people actually respond negatively to me when I said I was doing well). There are ups and there are downs. There are days when I feel so sick that it is a struggle to get out of bed. And then there are days when I feel pretty good and try to have a little fun. There are days when I am positive about my prognosis and there are days when I am negative about my prognosis. This is life. And you know what? It's perfect normal to have both of these types of days, especially when you are dealing with issues like cancer and widowhood.

So, the next time you find yourself trying to offer a friend the "bright side" when he or she is talking about a rough patch, resist the urge and offer a hug instead.

The Stages of Grief

The Kubler-Ross model of grief describes it in five stages: denial, anger, bargaining, depression, and acceptance. These stages aren't necessarily experienced chronologically, but I can say that I have experienced all of them. And all of them more than once. They aren't distinct states, exclusive of each other either, they meld together and are often intertwined. I think that there is a common idea, as well that grief takes one year and that once that magic one year mark passed, the grieving is over and it is time to move on. I can tell you that one year is not a magic mark. No lights went on and I did not suddenly feel better. If anything, I am feeling worse these days than I had recently.

Today I found myself in the bargaining phase again...a phase that I have always been uncomfortable with and one that I never believed that I would actually experience. I always that it was strange to try to change things by promising to do something or not do something. But, tonight I found myself saying that I would do anything to have my husband back. It was bargaining at my best--but of course there is no sense in that. And when I realize that I fall into the despair of hopelessness again. Perhaps that is the depression stage beginning anew.

Very alone

There are days when I feel very lonely, days like today. I realize that I have friends and I don't want to dismiss them, but my soul is lonely. And I realize that it is going to be this way for a long time because I am alone and am not exactly a catch right now. I had my love and my partner. I had my chance. Now I'm sick and alone, and I feel like I'm destined to stay this way.

It's been a year...

...a missing you every day.

A medical team that works

It is no secret that Gessner and I had many struggles with our medical teams throughout his life. It seemed like the clinic systems we visited were so broken in so many ways and we found ourselves fighting to get the care the we thought was necessary. I have many, many examples of times when that medical system failed Gessner, including failures that put his life in danger. My experience with the medical system was stained by trauma and a seemingly adversarial process.

So, when I was diagnosed with cancer and knew that I would be interacting with a medical team on a regular basis, I was nearly as scared of that prospect as I was of the cancer itself. I remember having so much anxiety related to talking to my surgeon about my decision regarding surgery--I was afraid that he was going to disagree with me and that I was going to have to fight for myself. This was not because of anything my surgeon said or did, but rather because of my experience with Gessner's CF-related care.

My cancer team has been amazing and I think that my story is an example of how medical care can and should work. It gives me hope that for future patients and support networks. I hope to take what I have learned in this journey and advocate for changes to the CF care paradigm, at least as it relates to care of adults with CF. Of course, I have to focus on surviving myself right now, but I am excited about the possibility of sparking some change in the CF community.

One of the things that makes my team so amazing is so very simple and fundamental: The doctors interact with each other. I have many different practitioners on my team, each with his or her own specialty. My doctors actual read the notes from each other and if appropriate, speak with each other about my care. This seems so basic, but it is quite the opposite of what I experienced with Gessner. We would often show up to an appointment with a new specialist only to be asked why we were visiting, with the doctor knowing next to nothing about Gessner's situation. Thankfully we were informed and usually knew why we were seeing a particular specialist, but I am sure that is not always the case. When Gessner was evaluated for a lung transplant, his team of doctors did sit down and speak, but I know that more discussions could have been useful at other times. I understand that logistics and sheer volume of patients can make this different, but it is critical that the doctors who are caring for a patient work together and to do that, there must be good communication.

Today I received a telephone call from one of my doctors to check in with me since I had missed our appointment last week. But before she called she looked at the notes in my file and saw that I was having a lot of problems with nausea. So, when she called, she already knew some of what was going on. The fact that she 1) called to check on me and 2) took the steps to investigate before calling amazed me, again, because of my prior experience. This communicated to me that my doctor actually cares about me and my well-being and that she has an active role in my care. Again, I know that there are a lot of reasons that this sort of thing might not happen in other arenas, but I think that it is something that should happen, especially when someone is dealing with a serious, life-threatening disease.

I love my cancer team and find that working with them is helping me heal from some of the trauma of my prior experiences. Too bad I had to get cancer to do this, but for today, that will be my silver lining.

That call

A year ago today I got a call from the hospital. I had stayed with Gessner overnight and his father came to the hospital in the morning to take over so that I could get a bit of sleep at home. I went home, showered, and got into bed. Just as I had fallen asleep, my phone rang and it was my father-in-law, saying that Gessner's doctor wanted to talk to me. I felt like someone had kicked me in the stomach. Dr. T. wouldn't call and wake me up if it wasn't something serious. And it was a Sunday morning, so again, it had to be something serious. I got up and made my way back to the hospital--a seven miles that I could drive in my sleep.

When I arrived at the hospital the nurse paged Dr. T. to let him know that I was there. Tom and I exchanged pleasantries, both knowing that something bad was happening, but neither wanting to voice it. Perhaps if we didn't say what we were thinking, it wouldn't be true.

Dr. T and one of his interns came to the room and walked Tom and I down a long, long hallway to a "family conference room." It was a small room with mismatched furniture thrown in. A small sofa on one side of the room and a round table with stiff, classroom-style chairs. There was a book shelf with nutrition books and pamphlets, along with plastic replicas of food, likely used to counsel patients on the nutritional components of diabetes. The room was beige and bland, unremarkable in all aspects, but because of what happened next, the image will be forever etched into my memory.

Dr. T motioned for us to sit down, so Tom and I sat in two chairs facing the door. Dr. T and the intern took chairs opposite us. A heavy pause, and then the news. Gessner is not getting better, his kidneys are starting to fail, he cannot remain on the vent for much longer, with each day that passes the chances of him getting off of the vent are smaller. We ask how long. A week at most. I felt like vomiting. I tried to hold back my tears and ask the necessary questions. Dr. T. ended by telling us that he had to go out of town for a conference but that he would be in touch with the new attending and would be back on Tuesday. He assured me that the new attending physician was good would be able to get in touch with him if anything changed.

I thanked Dr. T and the intern for their time and then we walked out of the room, back to Gessner's room. As I walked back into his room I tried to keep my tears in check, not wanting to signal any distress to Gessner if he could tell what was going on. I held his hand and told him I loved him, begging him in my heart to keep fighting.