A Wedding of Sorts

Well, I did it. I finished my vows yesterday, early in the evening, and shared them with my love a few hours later. I don't know that anything about it was much like I had planned at any stage of the game, but I am really happy that it happened, that I was able to keep that extremely important promise.

So, for those of you who know me well, you will know that when I tell stories I tend to give a play-by-play, so here comes the play-by-play of our mini-wedding, vows and all....

Yesterday, Thursday, January 31, 2013 at around 5 pm, I finished writing my wedding vows to the love of my life. A couple of hours before that, I texted my love's dad, asking him to bring my white skirt and white blouse from our closet at the house and a bowler hat (I couldn't remember exactly what style hat I'd seen, I'd thought it was bowler-esque) from my love's room. I wanted to wait until he arrived to have the wedding so that I could kind of have my pretty white dress, and my love could kind of have a snazzy top hat.

Around six-thirty, my love started having excruciating leg pains. This had happened the night before as well, and, then, it lasted for several hours, during which my love had A LOT of medicine for pain that only scratched the surface in regard to helping with the pain until my love fell peacefully asleep hours later. So when my love started having the leg pain again last night, I thought that there was no way I would be sharing my vows that evening because I wanted it to be a good experience for everyone involved. So starting at six-thirty, my love's mom and I took turns massaging my love's legs, trying to relieve the pain, and pushing the bolus button on my love's pain pump every fifteen minutes and calling the nurse in to give my love a different medicine every thirty minutes. I can't begin to explain how hard it is to see someone you love so much in such agony.

Then, my love's dad arrived around 8 pm, pizza and things from the house in hand. Unfortunately, my love's dad was unable to find the things I had requested, I probably accidentally told him the wrong place to look or something, so all he brought with him was a white long-sleeved tee shirt. I figured, no big deal since this isn't going to happen tonight anyway, if I feel that strongly about things I can go to the house myself and get them. So I grabbed some pizza while my love's mom rubbed my love's legs. Once I finished, we switched off. As I was sitting there rubbing my love's legs, trying to relieve the pain in any way possible, I told my love that I had finished writing my wedding vows today and asked if my love would still like to have a mini-wedding. My love has been having a lot of trouble communicating lately. My love seems able, most of the time, to understand exactly what is being said, but seems to have trouble actually saying things, so we have gone to asking my love yes or no questions and having my love respond in various ways such as a thumbs-up or down, or squeezing someone's hand for yes. So, I was holding my love's hand when I asked this question, and my love firmly squeezed my hand. I then asked if my love would like to hear the vows right then, hoping that, if so, it might be a nice distraction from the pain, and my love gave me a thumbs-up.

So, without further ado, or any announcement of what I was doing, I grabbed my computer that I had written out the vows on, sat in a chair next to the bed with the computer in my lap, held my love's hand, and looked in my love's eyes as much as possible while reading the vows. I was wearing what I had worn all day, a purple long-sleeved tee shirt and yoga pants, my love was in the bed in a hospital-style gown without a top hat, and the only other people in the room were my love's parents, whom I didn't even tell what was going on before starting, but it was beautiful nonetheless. At one point toward the middle of the vows my love squeezed my hand, and I felt so close to my love and so happy.

So yeah, I don't know if my love's parents heard all I said or not, I know they at least heard some, but the person I wrote them for got to hear every word. I hope it was as meaningful to my love as it was to me; I'm just so thankful that I got to keep my promise to marry my love before my love's death, no matter what.

All in all, I think it was exactly what needed to happen. I was afraid that if I kept waiting for "the right time" or "a better time," that such a time would never come. I know there were many people who would have liked to be there, and that means so much. And if, miraculously, things turn around and my love feels substantially better and we decide to have a formal ceremony, we will get as many of those people to the wedding as possible.

The wedding was totally different from anything I ever imagined. There were no flowers, no cake, no music, no pictures or video recordings, no potluck, no top hat, and not even a pretty white dress, but it was still beautiful. It is a moment I will cherish forever.


And for those of you curious as to what I said, here are my wedding vows...

Over the years, you've been known by a variety of names… Alicia Ann Sundheimer, Isaac A. Sundheimer, Fred, Carter, Suds, Blueberry, just to name a few. Each of these names brings different memories to mind for me that I deeply cherish. I've called you a variety of things as well – my soul mate, my angel, my best friend, my love, my sweetheart, my knight in shining armor, my partner, and even, at times, my edamame.  You are all these things to me, and so much more. You have helped me learn so much in the time we have known each other. You have helped me find the strength to get through times I was sure would break me beyond repair. You've taught me to look for the positive in everything and everyone. You have helped me learn that things don’t always have to be perfect or planned; that some days it’s best to let my hair down and fly by the seat of my pants. You've helped me tone down my competitive side and learn to simply enjoy the game instead of focusing on winning. You have reminded me to follow my heart and be true to myself. You've reminded me to seize the day and dance, rather than sit out, at every opportunity. You have shown me how to be strong – physically, mentally, and emotionally, and that sometimes the most strength is shown when you’re vulnerable. You inspire me. You have not only saved my life multiple times, you have also enriched it in ways I never knew possible and you continue to do so.

Alicia, I love you with every fiber of my being, and I promise that I always will, no matter what, forever and ever amen. I promise to love, cherish, and support you all of your days. I promise to hold you in my arms when we are physically together and to hold you in my heart when we are apart. I promise to respect and honor you and your desires. I promise to be physically and emotionally present whenever you need me. I promise to take care of myself so that I can have the ability to be there for you in every way that I possibly can.

I have believed for a very long time that love is eternal; loving you has confirmed that for me beyond a shadow of a doubt. My love for you has grown exponentially over the years and I know that it will never fade. I love, cherish, and adore every part of who you are, even the parts you may not be as fond of, because they have helped you become the amazing person you are today.

I love you, Isaac. And with this kiss, I thee wed.

Vows

I was just looking over some of the blog posts I wrote at the beginning of this journey, and I was reminded of some details I had forgotten. One post in particular, "Promises to Keep," really hit me just now. I remembered that I had promised my love many times that we would get married before my love died, and I've been struggling since the second tumor was found and my love has been struggling and declining so much with how to go about keeping that promise. There have been several times where I feared it was too late, that my love was declining too fast and that a wedding wouldn't be beneficial or make sense. I know that I will struggle significantly if I leave that very important promise unkept, but I want it to be meaningful for all involved as well. There have been several times where I've felt I've missed that opportunity. Then today, I went back and read that post, and through it I was reminded that I not only promised to marry my love before my love died, but that I promised to do so "no matter what." Remembering that, I feel that even though it will most likely not be exactly how we had imagined, I need to keep that promise.

A few months ago, my love asked me if my love was unable to walk, if I would push my love down the aisle at our wedding in a wheelchair. I said of course I would, and that I had actually been thinking about that and that I would want a chair placed by my love, so we could sit across from one another and look in each other's eyes. Now, my love will most likely not leave the bed, but I still intend to sit beside my love and hold my love's hands while I bear my soul through my vows.

Which is where the next challenge arises.... I've known all along that our wedding would not be all that traditional. I never hammered down many of the details of the ceremony, I figured that we would talk about all of that in time and decide together what it should look like. My love is now having more and more trouble communicating, and is awake less and less each day, so sitting down and talking about it, isn't all that plausible. I do know, though, that the idea of vows was quite important to my love. One day, when we were still living in Milwaukee, my love told me that my love had just begun writing one day, and realized part of the way through that what my love was writing were my love's vows to me. My love, unfortunately, then lost the random piece of paper that they were written on, and we haven't been able to find them since (although I was told that if I did find them, I was NOT allowed to read them). So, the task that lies before me is to write vows to my love.

The trouble is that I am having trouble knowing where to begin. I've never liked the idea of traditional vows that end in "'til death do us part" because I have always believed that love is eternal and that the promises I make at marriage should last forever. Now that death could physically part us more quickly than I had ever imagined, the idea of vows of eternal love are even more important. Sadly, knowing that is what I want is still not giving my creative process the kick in the pants I want it to. I suppose that, perhaps, this is one more area that really probably doesn't have to be perfect, even if I would like for it to be so. I probably need to just let go of the pressure I put on myself, and just say what I feel, though I imagine that will be somewhat easier said than done.

So yeah, any ideas would be appreciated, though please do not get offended if I don't necessarily incorporate all ideas I receive, these are my personal vows to the love of my life after all :).

Praying for poop

Yes, I am quite aware that the title of this post is strange and not very politically correct or socially acceptable, but it fits. The medical professionals caring for my love are pretty certain that my poor love has a bowel obstruction. My poor darling has choked down just about every laxitive and stool softener known to humankind over the last few weeks with little results. Since being admitted to the hospital on the fourth, my love has had four enemas and a suppository, no fun. The first three enemas and the suppository produced results, but there has not been a return to normal bowel activity after any of them. Our fear is that all of those just cleared out the lower bowel and left the upper part obstructed. My poor darling has been in excruciating pain from this obstruction, especially the night before last. Yesterday they started my love on a medication to try to draw the fluid out of the bowels as kind of a last resort. They are hoping getting fluid out of the way will allow things to pass through. So yeah, we're praying for poop to pass on through. Probably a strange prayer for God's ears, but I think if anyone can help it's God and I'm sure it's not the first strange request God has gotten. So yeah, the doctor said that if this medication is going to work it will make a difference in 24-36 hours. The medication was first given yesterday at 2:30 in the afternoon, so we're praying extra hard. They said that if this doesn't work the only other thing that would fix the obstruction would be surgery, which they say my love is too weak for surgery. So yeah, scary stuff. It seems like having brain cancer should be enough to deal with, whatever twist of fate that added a bowel obstruction to the mix is just plain cruel.

Weariness

I apologize now that this post is probably not going to be as positive and hopeful as I have been striving to be of late.

I haven't written in a few days simply because I haven't had a lot of super positive things to say. I have been tired and grumpy, sad and scared. Part of me feels broken, but I feel unable to attend to that part, so it just sits there, not really getting worse, but not getting better either. It's kind of like a broken side mirror on a car, just hanging there limply, not causing any more direct damage, but much like not having money to fix a broken side mirror, I feel I do not have the resources to attend to this broken part of myself. Perhaps resources is the wrong word. Maybe it is more of a lack of energy, motivation, or mental clarity, but I guess those are types of resource as well.

People have asked me lately how I am doing and at times my answer has been that I feel weary. This is a weariness I have never experienced, one that affects my body, mind, and soul. Each day has some ups and downs to be sure, I just wish the ratio of ups to downs was much more in favor of the ups.

Sleeping in yet another different "bed"

I just realized after writing that title that it could be taken a few different ways.... Hopefully anyone who knows me would know that I have been sleeping on "beds" of chairs and couches quite a bit over the last few months, and that I mean that I am going to be sleeping on another this evening. Why am I not sleeping in my bed at home? Because this morning my love moved to the hospice facility Trillium Woods, at least for the time being. My love's nausea came back in full force yesterday and brought along its friend, excruciating pain. My poor love was miserable at home, but also rather stubborn and was reluctant to take additional medications or try other methods of managing the nausea and pain. My love was interested in coming to Trillium yesterday for symptom management, but sadly there were no open beds at the facility. Luckily, one opened up today and my love was here at Trillium by 10:30 this morning. By changing the dosage of one medication and adding a different med for pain, my love's pain and nausea decreased this afternoon. So yeah, that's where we are, so I'll be sleeping either in a recliner or on a pull-out sofa this evening. As far as how things are going, it is hard to say. My love's pain is being persistant and it is agonizing to see someone you love so much suffer and not be able to do much to help. I can call the nurse, and they can try to tame it with medication but sadly it tends to put up a fight.

The chaplain asked me a question today, and I had real appreciation for how he phrased it. He said, "I realize this is kind of like saying, 'Aside from all that, Mrs. Lincoln, how was the play?' But how are you doing?" I felt that it was a really great way to ask that right now, and of course the Lincoln reference was appreciated :). When he asked that question, this morning as I was on my way out the door to pick up a mushroom and cheese pizza that sounded good to my love, I was able to answer him honestly that I was doing well. Tonight my answer would be more along the lines of "I'm hanging in there..." but I suppose that's pretty normal. I'm tired and stressed, but hanging in there. Looking forward to my therapy session tomorrow.

Life is a whirlwind

Less than a month ago, my love and I spent some time discussing the fact that we wanted to have a wedding in this coming year. About a week later, we found out about the new tumor and my love was admitted to the hospital. About a week after that, my love was released from the hospital with hospice care, Sunday a nurse from hospice told us my love appeared to be declining and might have just a matter of days left, Monday things turned around and my love is no longer showing those signs of decline. I can't begin to express how grateful I am for Monday's turnaround. Such a blessing that has restored a bit of the faith I'd been struggling with.

It probably goes without saying that I have been on an emotion roller coaster lately. In the last week alone, I have felt so much. There were times I have found great joy and laughed so hard it made my stomach sore. There have been times of great sorrow and pain and fear where I cried so long and so hard that my head throbbed, my eyes burned, and my stomach was sore from bawling. There have been times of great depression and irrationality, and times of peace and comfort and clarity of mind. And these times only scratch the surface of what I have felt this last week alone.

Despite the whirlwind of the last week (and really the last month or even year), today I feel grateful. One thing that I have always admired about my love is my love's ability to find the positive, often even in very difficult situations; I am trying to do the same. I say that I am trying because I am far from mastering this, but you've caught me at a good moment on a good day. Today I am grateful that my love's nausea is finally under control. I am thankful that I have been able to have some important conversations with several important people in my life including my love as well as family members and friends. I am thankful that my moments of irrational thinking, depression, and anguish have been outweighed by love, support, and clarity and that I have been able to discuss those darker moments with people in my support system and actively plan for what needs to happen if I am overcome by such moments. I am so grateful for each moment I have with my love and for all that we have shared throughout our relationship both as friends and as partners. I am feeling grateful for all of this and much more.

I want to share something with all of you, that I hope if I ever lose sight of, that those of you who love and support me can lovingly remind me of and guide me back to. Quite some time ago, I honestly can't even remember when, my love and I were talking about death. This may seem a strange topic, but we have both dealt with a lot over the years, especially with depression, and so we discussed how difficult it would be for either of us if we were to lose the other. I felt very strongly at that time that if my love were to die, that I would want to die as well, that it would be too difficult to be without my love and I would likely commit suicide. What my love said next wasso amazing and wise and enlightened, as things my love has really thought about often are. My love looked at me and said that if my love was ever to lose me to death, that it would be extremelydifficult, but that my love would want to live to try and do the things I would never have the chance to do. That has always stuck with me over the years and I have thought about it a lot lately, and on Sunday, I reminded my love of that conversation and said that my love's wise desire was my new goal. That whenever my love's time on this Earth is finished, that I will hold my love's memory and spirit close and I will do my best to do the things my love won't get to do. I don't know exactly what that will look like, but it is my goal.

Well, it is rather late, so I am going ti close. Thank you all for being part of our support system. Best wishes!

(p.s. - please excuse any grammatical errors as I am writing this on my pgone which has a touchytoch screen keyboard that doesn't always do what I want it ti.)

Sometimes You Surprise Yourself

There have been many times in my life when I have said things like, "I'd never.." and then had to eat my words. I have surprised myself a lot over the years with how my life has gone. Today, I'm surprising myself once again.

I don't know that I have actually ever said, "I'd never have a day where my only goal was to get a hold of some marijuana" in fact, quite frankly I think I thought that was so far out of the realm of possibility, that I never even thought to make such a statement. Well, as life so has it, that is indeed my only goal for today.

No, I have not become suddenly rebellious or whatever, and no, the marijuana would not be for me, it would be for my love to try and combat my love's untouchable severe nausea. My love is miserable. In fact, those were exactly the words my love used the other day to describe how my love felt, miserable. It is heartbreaking to watch someone I love and care about so deeply suffer so. We have exhausted every other feasible option as far as I know. The doctors are rather stumped. Granted, the medical marijuana might not even help at this point, we don't know, but we have to try. We are hoping that my love might be able to tolerate having it made into a tea or some form of an edible something or other. Of course, though, I can't just stroll down to Walgreens and pick some up like I can with everything else we've tried. So I (you know, the one who grew up the straight-laced good little Mormon girl) have been making phone calls like a mad woman trying to get more information on how to obtain this alternative treatment. If someone ran my phone log today, they probably would think that I am actually a desperate drug-addict, instead of a loving partner, but I don't really care what it looks like, I just want to help my love feel better.

So yeah, I have called clinics that specialize in helping people get med cards, I've called dispensaries, I've called people who know people who use marijuana for medical purposes, and so far, no luck, but I am not giving up. I keep running into a ten to twenty-one day waiting period for the med card to be active or whatever so that we could legally purchase the marijuana. This is terribly frustrating to me, for a number of reasons. First, my love's doctors are totally on board, they just want my love to feel better. One of the doctors even said that if there was a way for her to write my love a temporary prescription kind of thing, that she would be happy to do so. They know my love has brain cancer, they know that my love isn't making it up, or trying to screw with the system or what not, my love just wants relief from the ever present severe nausea that this stupid new tumor is causing. Second, I feel like this waiting period is almost a punishment for being a "good, law-abiding citizen" that only turns to illicit substances as a last resort. Can't they come up with a "fast-track" system if a doctor signs off that their patient has exhausted other avenues. My love is way too miserable to wait ten to twenty-one days for relief. I'd like the idiotic government officials that created this stupid waiting period to feel the way my love feels for ten to twenty-one days and then come back and tell me how a waiting period makes sense in all circumstances. I get that people will try to take advantage of any system, but if someone is diagnosed with a serious illness like cancer and are terribly uncomfortable, they should not have to twiddle their thumbs for up to three weeks before getting relief.

So yeah, I am still searching and trying to get a hold of this stuff. Hopefully once we have it, it will work. If not, at least no one will be able to say we didn't try absolutely everything. Ugh!

Moral of the story, never say (or even think) "I'd never...." It will come back and bite you in the butt!

Update from the Hospital

So, the other day I started writing a post that was going to focus on being thankful to say goodbye to last year and hoping that this year would bring tremendous improvement for my love, but I didn't have time to finish it. Sadly, that is not what this post is about today exactly (hopefully I will get back to the other post another time). Instead this post is an update from my love's room at the hospital.

I feel a bit overwhelmed with everything that has happened in the last week or so, so I will probably forget things and leave stuff out, so if you have any questions, don't hesitate to contact me, either here in the comments, by email, or by phone.

So, I am going to start with the most important info, that way if you don't have time to read a ridiculously long post, you can at least be updated. This past Thursday (Jan. 3) my love had another MRI. We were at the two month point and the oncologist felt it was important to do it sooner rather than later, which we all agreed about. The following afternoon we had an appointment with the oncologist and we were informed that the MRI showed new tumor growth, this time right around the brain stem. The oncologist was rather concerned and felt my love should be admitted to the hospital. He told us that the tumor was most likely inoperable, but that, because of it's new location, could most likely be treated with radiation, Avastin, and a different chemotherapy drug (as it grew while my love was on the other chemo drug, so that one obviously wasn't doing the job). He said they would bump up my love's steroids as the area of the new tumor is quite sensitive and was causing swelling that needed to be brought down. He said most likely nothing treatment wise would start until Monday as the radiology people didn't work on the weekends, but that it would be a good idea for my love to be in the hospital anyway to get things moving as quickly as possible and to be monitored, especially with the swelling.

This all happened very quickly, so quickly that I felt my love was hardly getting a word in edgewise and I felt that decisions were being made without actually asking my love. So, for better or worse, I went on defense mode. I guess I have just felt that in various situations throughout this process that my love has been treated more as a child than an adult, which I am not okay with, so I have been trying to open my mouth more and make sure that my love's voice is heard, probably more of a personal issue than anything else, but yeah, I feel it's important that my love has a say in every step along the way, whether a doctor thinks something is best or not. I have also been rather frustrated with the oncologist lately, so I have been on the defensive with him anyway, so yeah, for better or worse, I asked a lot of questions.

So, my love, as well as my love's family, and I (but most important my love) felt that being admitted to the hospital was a good idea and that we want to get things moving as quickly as possible to treat this. So we were taken from the cancer pavilion through a tunnel across the street to the hospital. Now, I must say that as much as I am pissed with the oncologist, I really appreciate a lot of the staff in his office, especially the people in scheduling. One woman in particular really likes my love and is always really kind and helpful. Luckily she was the one that called over and set up my love's room and stuff, so, thanks to her, though we had to be admitted to a double room for a short time, she made sure my love was put at the top of the list for the single room that was to open up a little later that evening when another patient was discharged. This was really helpful as when my love is in the hospital neither my love's mom nor I have a tendency to leave the hospital for much of anything. My love's mom is rather adamant about not leaving whatsoever, and I only leave if it is absolutely necessary for taking care of myself or my love, so we sleep in chairs in my love's room every night and that is difficult in a double room. Also, my love's "room buddy" in the first room had the television on rather noisily, and my love has had a fair amount of headaches, dizziness, and nausea which often gets worse with increased commotion, so a single room where my love could rest in peace and quiet is definitely ideal.

So, that first night they really upped my love's Decadron (the steroid), which we expressed concern with and I kind of questioned/fought, but the RN from my love's oncology office that was at the hospital was adamant about giving my love a "loading dose" of 10 mg. and then proceeding with 4 mg. every four hours. She said that the swelling my love was having was "potentially life-threatening," and then I shut up pretty quick. Whether that was true or not and she just wanted me off her back, I may never know. I certainly want the best for my love, whether the RN sees that or not, and my concern was with how difficult it is for my love to handle that much steroid, and the RN said it would probably just be that high for a day or two, so my concern was the extreme joint pain my love has every time the dose is lowered.

Anyway, we've been at the hospital now for almost two full days. They seem to be taking pretty good care of my love, the nurses and aides are particularly great. I am tired and don't feel like typing any more at the moment, but at least now there is an update, even if it is kind of a partial one.

Keep us in your thoughts/prayers/whatever if you can. Thanks!