Post Christmas Update

Hello all! I hope those of you who celebrate Christmas had a merry one, and those of you who don't, I hope you had a lovely December 25th.

I thought I would take some time to update you all on the past few days so as not to worry anyone any more than I already have.

The morning of Christmas Eve was similar to the day before, my love had a little confusion, though it was substantially less than Saturday afternoon and evening, and was still having a lot of trouble moving. My love's legs simply didn't seem to want to work. So we called the oncologist's office to see if they were open and see if there was anything they could suggest. They were open and my love's oncologist was even there when we called. We left a message stating what had been going on and asked what could be done. Over an hour later we got a call back from his nurse saying that she had spoken with him and he said there was nothing more he could do until after he saw the results of the MRI scheduled for Thursday. We told the nurse that we didn't have an MRI scheduled for Thursday, my love had a spinal tap scheduled for that morning, but the spinal MRI had already happened and the oncologist already had those reports. The nurse then said he must have been talking about the spinal tap and there was still nothing he could do until after that time, so he would see my love on Friday and go over the results of that test.

Needless to say, we were quite frustrated with that answer. It's easy for him to say there's nothing he can do until Friday, he isn't the one here watching my love struggle to move and having to support my love when my love's legs won't. We tried calling other members of my love's treatment team to see if anyone else had a better answer than see you Friday, but we weren't able to get a hold of anyone with the holiday. So we decided to call back and ask for the oncologist to speak to us directly rather than through the nurse. We waited a while, then got a call back from the nurse once again stating that the oncologist had already left for the day, but she had spoken with his physician's assistant and she had said that she didn't have time to see my love that day, so her suggestions were that if we felt it was an emergency situation we should go to the ER, otherwise, she would suggest upping the decadron (the steroid we'd be fighting so hard against because of negative side effects). We discussed these options and didn't feel like it was a life threatening emergency or anything and that if we went to the hospital, they'd likely try upping the decadron anyway, so we asked how much to increase the dosage. We were told to up it from 1 mg twice a day to 2 mg twice a day, which my love had been on a month or so ago.

So, that's what we did. We asked how soon we would notice a difference if the decadron was to help and the nurse said she thought we'd see a difference the next day most likely, but we weren't honestly sure how familiar she was with the drug. So my love struggled throughout the day on the 24th, sleeping a lot, not feeling well, and not moving well. My love really wanted to go to the Christmas Eve service at my love's church, but didn't feel well enough and didn't think it would be a good idea to push it. It was really sad and hard for my love to miss the service, but my love's mom and I tried to make up for it as best we could by staying home with my love and singing Christmas hymns and reading Christmas stories. We even baked some Christmas cookies as after the service they have cookies available.

Then came Christmas day. The morning started out fairly similarly, with my love being very tired, not feeling very good and such. But by late morning my love got up and sat in the wheelchair and played some cribbage with the family. My love had not been out of bed much the previous two days because my love didn't feel well enough, when sitting up the world spun and my love felt nauseous, so for my love to get up and play cribbage was fantastic. Sadly, that wore my love out a bit, so my love was a bit too tired to eat Christmas lunch with us when it was ready. But within an hour after we finished, my love was feeling better and got up and sat in the wheelchair and had a good sized Christmas lunch at the table! I cannot tell you how exciting this was. It was a fantastic Christmas gift to all of us to see my love have a better day. And things continued to be much better than the previous days. My love ended up eating at the table two more times on Christmas day.

Today has been a pretty good day for my love as well. My love has eaten at the table a few times and even did some occupational therapy exercises today. My love is so determined and persistent and I am very proud of my love. Early tomorrow morning is my love's spinal tap, which we are all dreading because the test itself is rather terrible to go through so I understand. My love had one in middle school and describes it as one of the worst experiences my love has gone through. So yeah, it sucks that my love has to go through it again. Hopefully they have somehow improved the process since our middle school years.

With everything that has been happening and is going to happen, I have a lot of fear and uncertainty, but I continue to hope and pray for the best. I love my love very very much and want to support my love no matter what, I just want the "no matter what" part to be painless for my love.

I will try to keep you all updated on the spinal tap results as we find out info. Feel free to contact me if you get concerned or don't get info as quickly as you'd like. Hugs and love to you all! And thank you for your continuing love and support. It means the world to me, my love, and my love's family.

Merry Christmas, Medication Issues - An Overdue Very Long Post

'Twas the week before Christmas and all through our house, stress, confusion, and issues abound.

That basically sums up what's been going on these last seven days (and possibly longer).

I'm very sorry that I have not been nearly as diligent in keeping everyone informed as I had planned on being. I will try to catch you all up at some point, but rather than try to cover several months worth of info right this moment, for my own sanity, I'm simply going to write about this last week in this post.

So, my love has been on a chemotherapy regimen of 5 days on 23 days off since ending radiation. This past Monday was the last day of the most recent round of chemo and started off a lot of the craziness. My love has been having some pretty serious dizziness and nausea for quite a while now, but this last round of chemo pushed it over the edge. On Monday the dizziness and nausea got so bad that my love threw up after readjusting from a seated to lying position. My love had been nauseous all morning so had eaten only a bit of toast and applesauce. Not good when things that bland don't even stay in your tummy. Between not feeling well (nausea and dizzy wise), especially when sitting or standing, and throwing up once daily from Monday to Wednesday, my love didn't get enough fluid or sustenance and we were worried that my love was becoming dehydrated.

By Wednesday, we were quite worried, so we called all of the doctors, and yes, I mean all. We called the oncologist, the palliative care doctor, and the case manager and expressed a variety of concerns including the dehydration and the dizziness and nausea being so bad. So, the oncologist's office squeezed us in to see the physician's assistant Thursday morning at 9:30. They did some blood work, talked to my love, my love's mom, and myself and determined that my love was indeed dehydrated and needed some IV fluids. The physicians assistant also told us to start a regular regimen of the nausea medication my love takes the days of chemo called zophran plus add another medication for nausea called marinol. So, we went to a little room in the infusions area and my love got to lay down and get some IV fluids as well as some ativan which they said was to help with both the nausea and to stimulate the appetite. They also wanted to give my love 10 mg of decadron (the steroid my love has been on since they found the tumor that we have been trying to wean off of as per the oncologist as it is causing an array of issues for my love), which is 5 times the amount my love currently takes in a day, and my love had already taken 1 mg that morning, so my love's mom and I fought against that and they did not give the decadron after all. So a little while after starting the IV fluids and giving my love the ativan, they got the blood work back and said that my love's potassium was low, so they wanted to do a potassium infusion which would take two hours as if you give someone a lot of potassium at once it can mess with the heart rhythm. So the appointment went from what we were hoping would take half an hour to an hour to lasting from 9:15 am (as my love had to come in early for labs) until after 2:30 in the afternoon. Needless today, stuff I was hoping to get done for work did not get done. Oh well, not a huge deal.

So, after getting the IV fluids and ativan, my love started feeling exponentially better. I'm talking very little nausea or dizziness and my love was hungry! I was very excited. My love even ate almost an entire ham and provolone sandwich from the cafe (that was a good size), which was probably more than my love had eaten in the past three days combined. The sandwich even had honey mustard, spinach, and tomato on it and it sat well in my love's stomach. The nurse saw how well my love did with the ativan and suggested that my love might start taking some regularly with the zophran and marinol. That evening, my love was still feeling somewhat dizzy and nauseous at times, but was able to come to the table and eat dinner with us, which hadn't happened all week (my love had only been eating from a TV tray on the couch because coming to the table made my love too dizzy and nauseous). So, we all ate dinner and it stayed put. We had instructions to make sure my love sipped on powerade or something with electrolytes every half an hour, and we hoped we were out of the woods.

Sadly, the next morning when getting up to go to the bathroom, my love threw up yet again (though there was practically nothing left in my love's belly to throw up as my love hadn't eaten since the night before). The dizziness and nausea continued throughout the day, though, thankfully, my love did not throw up again. We had instructions from the oncologist's PA to call the next day to check in. So later in the afternoon my love and my love's mom called and let them know what was going on. The physician's assistant called back a little while later and said that she felt my love should go back in to get more IV fluids, but that the cancer pavilion was closed by this point, so they should go the hospital's emergency room. So I get a text at 5:53 from my love's mom saying that after talking with the oncology office they wanted my love to get another IV for fluids, this time at the hospital. I am really tired of getting phone calls and texts that my love is in the emergency room, granted it has only happened twice lately, but it is still no fun! Anyway, so instead of driving home or to my love's church to attend the Winter Solstice concert that my love had been looking forward to for quite some time, I drove to the hospital.

My love was getting fluids and was feeling very tired, so my love's mom informed me that more blood work had been done to make sure things were looking good, as well as a urine analysis and that zophran had been given again. After a little while, my love needed to use the restroom and when my love sat up, my love said that on a scale from 1 to 10 both dizziness and nausea were non-existent. Boy was that exciting! So, the ER's physician's assistant that was taking care of my love came back after a while and said that my love was not dehydrated and that all the levels of stuff shown in the blood work looked really good, so that my love could go home if that was what we wished, or if we wanted, they could admit my love and try and figure out if there was something more going on since it had been 4 or 5 days of pretty severe nausea and dizziness. They said that if my love stayed, they would probably do another MRI, just to make sure nothing new was going on. My love just had an MRI in November and things looked very stable at that point, so my love was feeling pretty good and wanted to go home. When my love got up to go to the bathroom after being discharged, however, my love started feeling dizzy and nauseous again. My love was still pretty adamant about going home though, so that's what we did.

Now, before hearing back from the physician's assistant at the oncologist's office on Friday, we finally heard back from the palliative care doctor and he suggested that my love stop taking reglan (which my love was put on for nausea over Thanksgiving break) and change to Phenergan which is an older drug and helps some people more. So, if you are keeping track, three new medications were added in the course of two days in addition to one being changed from as needed to a regular regimen and one being dropped. We checked with the oncologist's office to see if they agreed with that suggestion and they said that would be fine to try.

So, that brings us to Saturday. On Saturday morning, my love was still feeling dizzy and nauseous. We made sure that my love got all of the new medications and breakfast by 10 am. By 1 pm, my love was feeling pretty good and wanted to go shopping for Christmas presents. I was supposed to have left to go to Iowa Saturday morning to visit my family for Christmas, but I wanted to make sure that my love wasn't going to end up back in the hospital or anything before heading out, so I stayed an extra day. So, my love and I went to the mall to look for Christmas presents. We first got some lunch around 2 at Panera and my love took all the medications that were supposed to be taken at lunch at that time (Marinol, Zophran, Meclizine, Decadron, and Phenergan). We then shopped around at various sports apparel stores looking for things for my love's siblings. Around 3:30 or 4 my love started seeming a little off. I asked if we should return home, and my love said that it was hard to go home after being out because at home my love felt everyone felt they could tell my love what to do. My love was pretty adamant about not going home. So I didn't think too much of it, we just kept shopping and at times my love seemed a bit agitated  but that's not terribly weird considering my love was in a wheelchair for quite a while and seemed a bit uncomfortable. At about 4:15 or 4:30 my love took the Ativan as prescribed. A little bit later my love started getting more and more confused and disoriented, but was still rather adamant about not wanting to go home. There were just little things my love was confused about, thinking that a red tag was the handicap parking pass on the floor, thinking the bag had fallen on the floor when it was sitting in a chair, just little stuff at first. We ate some sweets and hot chocolate at the Barnes and Noble cafe and then my love started realizing how confused my love was. After a little while my love agreed that it was time to go home. On the drive home my love was very confused and disoriented saying things like, "So you're okay with soft foods for dinner tonight, because you know when you get a filling or dental work they say not to eat for a half an hour and then once you start eating, to eat soft foods." In case you were wondering, I've not been to a dentist in over a year and my love hasn't been to one in over a month at least.

When we got home, my love continued to be disoriented and confused. My love did not want to get out of the car because my love thought we were leaving instead of coming home, and all sorts of things like that continued once my love was inside. So, obviously my love's parents and I were concerned. So we called the after hours line for the oncology office. We explained what was going on and they said the on call oncologist would call us back within a half an hour or we were to call back. A half an hour came and went with no phone call, so we called back. They then said that if we didn't hear back within 45 minutes to call back as they were trying to reach the doctor in other ways. So, within a half an hour, we got a phone call from the on call oncologist whom had been contacted the night before when my love was in the emergency room to see if he felt strongly one way or the other on my love being released. So, we told him what was going on and the three new medications my love had started in the past couple of days. He said that we should stop the Marinol as that frequently has a lot of negative side effects which can include confusion. We told him that we had read in the medication information for the Phenergan that it could also cause confusion (in the time that we were waiting for him to call back, we looked at the paperwork that came with the Phenergan and Ativan, I don't think we could find the Marinol's paperwork). He said that was not a common side effect of that medication, but that we could stop it and go back to the Reglan. So, that's what we did. We asked about what time frame we should be concerned if her condition did not improve, but he didn't really give a straight answer even though the question was asked at least three times. He did, however, recommend upping the decadron for a short time period, which we again fought against saying that the oncologist we work with has been trying to get my love off of the medication for quite some time, slowly tapering it down and that my love has had a lot of negative side effects from this medication.

So we stopped the two medications the oncologist suggested. After going to bed, I couldn't sleep, so I looked up the three new medications prescribed to my love and their side effects. What I learned blew my mind and kind of terrified me. The marinol, as I understand it from the reading I did, is basically a man-made cannabis and frequently has many negative side effects (as the on call oncologist said) that can include everything from confusion, hallucinations and feeling "high" to dizziness. What I read also said that you should avoid taking it if you are on other medication that affects the central nervous system, like antidepressants (which my love is on) as they can enhance the effects of marinol. We were told practically nothing about the medication when it was prescribed, just that it would hopefully help with the nausea. No information on side effects to look for or anything else was mentioned. I am extremely ticked off about this. Phenergan also listed confusion as a possible side effect, as did the Ativan. I also found out that the Ativan is actually a benzodiazapine (which can be addictive) and is most commonly used for anxiety. We were again given none of this information; all we were told was that it would help the nausea and stimulate my love's appetite. I am livid. I feel like shaking some medical "professionals" until their eyeballs fall out of their heads. When I am prescribed new medications, I always ask about side effects and try to get as much information as possible, but all the meds I am prescribed are for mental health issues and I've had a lot of negative side effects before from such medications. When I go to a doctor that isn't for mental health and they prescribe me something for nausea or a cold or an infection, I don't normally ask about side effects, I guess I just assume that the medication they are giving me is a) for the condition I am saying is ailing me, b) for what the doctor says it is for, and c) if there is any important information I should know regarding side effects and such, that the doctor will take the time to tell me about them. Apparently in the world of oncology, anything can be used for nausea and patients don't need to know anything about potential side effects or issues. Can you tell I'm angry?

Which brings us to today, Sunday, December 23. My love has still had some confusion throughout the day. Everything from thinking that my love was able to get up and walk across a room to the bathroom without help (which has not been possible for at least a month), to thinking my love had put pizza in the microwave (again thinking my love had gotten up and walked to the microwave alone), to having very little grasp on the passage of time, to thinking things were in my love's hand or lap that weren't there. Many times my love realized after a minute or two that my love was confused and things weren't there or were different than my love thought, while other times my love was adamant that my love was correct and got very frustrated and agitated. It's been a rough week in general, but these last 30 hours have been particularly hard. It reminds me of when I was a caregiver and worked with clients with dementia, and that is terrifying when it is your 23 year old partner whom you love and care about. It has also reminded me several times of when my love was in the hospital for the first surgery. At that time my love was on morphine and got really confused. It is really hard to watch as well as frustrating at times because what do you say when the person you love gets angry and raises their voice at you because you try to tell them that you put the pizza in the fridge, but they think that they just put it in the microwave. It probably sounds stupid and trivial, but it's hard to help someone who is yelling at you because they are sure they're right when really they have no clue what's going on.

This morning after breakfast when my love was still having a lot of confusion, my love's parents and I were concerned because we didn't know how long the medication would be in my love's system and when we should be worried if the confusion hadn't ended. The pharmacy my love's family uses is closed until after the holidays, but I realized that the Walgreens by us is a 24 hour pharmacy, so I drove there and asked the pharmacist about the medications. I told him that my love was having confusion and he told me that, yes, all three of the medications can cause that and that by starting all three, the possibility of having confusion increased. I told him that my love had stopped two of the three, as per the on call oncologist, and asked how long those medications stay in one's system. He said that they can be in your system for a day or two, so if after two days my love was still having confusion to talk to the oncologist about stopping the third new medication. He also said that if it was one of the medications we stopped, that we would be seeing less confusion as it lessened in my love's system, which we have been. He didn't seem extremely concerned, especially when I told him that my love's confusion was less today after stopping the medication last night, which was encouraging to me and my love's parents. So yeah, hopefully we will see marked improvement in the morning. My love has also been very tired today and has slept a lot of the day, who knows if that's a side effect thing (I know the ativan can make you sleepy they said, which makes sense if it's an anti-anxiety med) or an overexertion thing or a combination of the two.

I am hoping and praying things are better tomorrow. If not, we'll probably call the doctor again. Blah, I think it is about time for things to get better instead of more challenging.

Again, I'll try to catch everyone up more later. If you have any questions, feel free to call me too.

Hugs and love to everyone!

One Chemo Down, Plus A Special Walk

Well, things have been rather busy and a little crazy here since I last posted.

We saw the neurosurgeon on July 26th and he said just about what the oncologist did (as far as the scan looked pretty good, some "signal changes" in some of the tissue (that could be from radiation, chemo, or cancer) that we will keep watching with additional scans), but he did actually show us the scans and showed us what the signal changes look like. So no major new info there, but still a nice appointment; good to see a visual of my love's brain. He also informed us that the visual changes my love has been having are most likely treatment related and that they will hopefully fix themselves in time. The neurosurgeon also agreed with the "maintenance chemo" plan the oncologist laid out, so my love started the first round of that the evening of July 26th.

The higher dosage, maintenance chemo round went pretty well, all in all. My love was quite tired throughout, which is to be expected, but had fairly minimal nausea which we are very thankful for. I was planning on trying to visit my family at the end of July, beginning of August, as my brother was in Iowa to see the family, but felt I was needed more here, so I stayed with my love. This turned out to be a good thing since my love's grandfather ended up being taken to the hospital on Sunday the 29th. He was in the hospital for just less than a week, during which my love's mother was very busy spending time at the hospital and taking care of things at her parents' home, while my love was exhausted and not feeling 100%, so it was good that I was able to help out with things here.

On Monday, though, while driving my love back from physical and speech therapies, I got a very flat tire (I think something in the construction zone on the way there snagged it as it had an ugly gash in it), so that was additional unneeded stress. Thankfully, I pulled into the parking lot of Wolverine Printing and a couple of their employees were extremely kind and generous and put my spare tire on for us. I was so grateful, since otherwise my love's dad would have had to come out to help after he got off work that evening and my love and I would have been without a car for the day. So yeah, the drama and stress has a tendency to never end apparently, but it could have certainly been worse. No one was hurt, and we were helped by some really nice people.

On Saturday, August 4th was the "Miles for Hope: Moving Towards A Cure" walk for brain tumor research, so Friday night my love's parents and I stayed up until midnight decorating t-shirts with one of my love's favorite quotes. The t-shirts were gray (the color for brain cancer awareness) and said "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not!" The quote is from Dr. Seuss' The Lorax, and we felt it was quite fitting in this situation as well. We had a few mishaps in making the t-shirts, but in the end, we all had gray shirts with matching quotes, which is what we were going for :). Below is a picture of me, my love, and my love's dad wearing our shirts at the walk. My love is trying to give my love's dad "bunny ears" with my love's troublesome left hand, you just can't see them as much from the angle the picture was taken at. Still a fun picture I think, and it gives you an idea of what the shirts looked like.

The walk itself was special, but rather exhausting, especially for my love. My love and I signed up to walk the one mile portion, but the halfway point for the one mile (where we were supposed to turn around) was not clearly marked, or if it was, we missed it, so we just kept walking. The 5k portion of the walk that my love's parents participated in, started in a different direction, but looped around and met up with our trail. Long story short, we walked a long way (not sure exactly how long, but we're pretty sure it was quite a bit more than a mile). We got to walk the last portion with my love's parents and some friends (both a new-found friend and a couple of people my love knew from teenage years). We crossed the finish line around an hour after we started and a bunch of people clapped and cheered as we finished. It was quite an accomplishment for my love. Afterward, my love was pretty much exhausted and it took a couple days to recuperate, but I think it was worth it. It was something my love looked forward to doing and was able to accomplish. A special thank you to all of you who supported us in this walk financially, as well as those who spread the word about it to others. It really means a lot to me, my love, and my love's family. More than anything we want to see a cure for this, and hopefully things like this can help us get closer to that goal.

So yeah, those are the main things that have been going on here. My love and I had been hoping to make it up to Milwaukee this weekend, but it's just not going to work out. Maybe we can sometime in the not too distant future.

Love and hugs to you all!

Update on Us

Some of you may know that today was a long awaited day for us; it was the first time we met with the oncologist after radiation ended and a new MRI was taken (on July 11th). I have been waiting for this appointment anxiously for over a month. So without further ado... here's what we know:

First of all, both radiation and the chemo drug, Temodar, change the way the brain looks on an MRI. With that being said, it is very difficult to know exactly what is what by just looking at an MRI. We do know, though, that the swelling and stuff near the site where the surgery took place has decreased since the last MRI which was taken the day after the second surgery, so that is good. We also know that there are some areas of my love's brain that look different than "normal." Again, this could be from radiation, chemo, scar tissue, or cancer. The oncologist we have isn't the greatest at understanding the actual MRI film/scan, so he has a radiologist look at it and then reads their report. Tomorrow, we see the neurosurgeon who is better at understanding the film/scan thing, so we may get additional information tomorrow. At this point, though, the plan is that my love will start taking a higher dose of the chemo drug every day for 5 days and then have 23 days off before starting up another cycle. This will start sometime soon after tomorrow's meeting with the neurosurgeon as long as the neurosurgeon agrees that this is the best course of action. So yeah, a little less than clear and definite, but we're thankful there is no obvious major growth or issues. The MRI that was taken on the 11th will serve as something to compare future MRIs to, in order to make sure no growth is occurring and that the stuff that looks "different" is really just from the radiation/chemo/surgery/etc.

So, that's the basics from this morning's meeting. In other news, my love and I signed up today to participate in the "Miles for Hope: Move Towards A Cure" event that will be taking place in Grand Rapids on August 4th. We will be doing the one mile walk event. The event is a fundraiser for brain tumor/cancer research. If you'd like to check out my website for that event, you can find it at http://www.braintumorevents.org/faf/donorReg/donorPledge.asp?ievent=1011144&supId=363468200. My love's parents will be participating in the 5k run/walk event.

Also, my love and I are hoping to make a trip to Milwaukee before the semester starts, so we're trying to work out those details and will hopefully have more info soon.

Sorry I've not been the greatest at keeping this blog updated, it's really been a bit of a waiting game recently.

Frozen Custard... Finally!

My love had been saying for quite a while now that once radiation ended, we should celebrate with frozen custard. For one reason or another this did not happen until today.


Sadly, frozen custard is not nearly as popular and prevalent here as it is in Milwaukee, but we made do as best we could by going to Culver's. The custard was quite tasty, made even sweeter by the knowledge that the hurdle of radiation is over.


So, if you're looking for a reason to enjoy the tasty treat of frozen custard, just tell yourself that you are joining in our celebration! :)

Let's Celebrate!

Today, June 26th, marks the last day of my love's radiation treatment and first round of chemotherapy. This is very exciting for everyone who loves and cares about the love of my life.

Daily chemotherapy mixed with five days a week of radiation for six weeks is far from easy. My love describes treatment as "uncomfortable." I can't imagine it being anything other than uncomfortable when one's head is squashed inside a mask that is bolted to a wooden board that you have to lay on without moving for 15 to 30 minutes per treatment. My love has been very strong and brave throughout this process and has complained minimally, always managing to find ways to look on the bright side of things. I've said it before, and it has certainly not changed; my love inspires me.

Today is also a little scary. It marks the end of one of the first battles, but we won't know until late July what exactly we still have to face to win the war. Which means that the next month will be a nerve-wracking waiting game. My love stops taking the chemo pill after tonight and, as far as we know, will not start a new chemo regimen until after we see the oncologist on July 25th. Of course, the radiation and chemo stay in one's system for a while, so it will still be fighting the cancer cells, and my love will continue getting stronger through various therapies, rest, and eating, allowing the body to continue to heal. Yet, it is still hard at times to know we will have more time on our hands because we won't be going to daily radiation appointments. With radiation, we had a routine, it was exhausting and at times hectic, but still a sense of normal. Now we have to find a new normal, a waiting normal, as we wait for the results of the MRI and know what else we're facing and are given a new plan of action. I know we can find a new normal, it just may take a little adjusting.

In the midst of trying to find this new normal, I am taking some time to visit my family in Iowa. I had originally planned to do this at the end of July, but I now think that time period may not be the best, so I will leave tomorrow and return before the fourth. It is extremely hard for me to leave my love, but I know I want and need to see my family and that my love is in very good and capable hands with her family. It's just weird to think about missing physical/occupational/speech therapy sessions and not being physically there for several days. I am trying to quell the "what-ifs" though and let go so I can enjoy my family.

One more interesting thing we found out about yesterday... there is going to be a 5k walk/run in support of brain tumor/cancer research in Grand Rapids on August 4th. I am planning on signing up soon to participate. I have to talk with my love and my love's family, but I'm hoping we can form a "Team Sundheimer" in honor of my love and the fight my love is waging against this disease. I know my love intends to be there and participate as well, which is really awesome! I will post more information about it and how to get involved, if you so desire, as soon as we figure out what exactly we're doing.

But yeah, most important thing today is the celebration of the end of a significant battle in this war. A celebration of my love's strength and positive attitude. Bring on the frozen custard!

Movin' Right Along

Well, I have been slacking with updates once again!

Things are continuing to go pretty well. Yes, there are some days with more pain and/or fatigue and/or nausea than others, but overall, my love has been feeling fairly well and hanging in there marvelously.

We are down to 7 more radiation treatments, with the last day of treatment still scheduled for June 26th. Can anyone say "Party!"? An MRI is scheduled for July 11th to find out how the radiation went, but we won't hear about the results until we meet with the oncologist 2 weeks later on the 25th. So that will be a couple of nerve wracking weeks, but I'm sure it will be fine.

My love's poor incision seems to be infected a little. My love hasn't been running a fever or anything. But there was greenish oozing stuff coming out of part of it yesterday. So today a nurse and a doctor looked at it today and prescribed an antibiotic, so that should nip any problems in the bud.

So yeah, lots of stuff coming up, but we're keeping busy in the meantime between 6 hours worth of physical/speech/occupational therapy appointments each week and radiation every weekday, plus other appointments and meetings and stuff periodically.

Sorry this is kind of a quick update, but my love and I are off to Gilda's for a 20's and 30's Social Night at Gilda's Club consisting of a barbecue, games, and socializing with other young people in similar situations. So yeah, should be fun! I'll try to update more often.

Starting to Find a Routine... Hopefully

Sorry I've not written lately. I guess in some ways that is a good sign, nothing too drastic to report.

Anyway, this last week or so has been quite busy, but in a way where things seem to be fairly regularly scheduled and expected. Yes, some days are better for my love than others, both physically and emotionally, but overall we seem to be doing alright.

My love, my love's parents, and I all had the opportunity to attend a brain tumor support/networking group at Gilda's Club last Monday. It was really neat and helpful, I think, as well as a bit difficult. It was certainly inspiring to hear stories of people that had brain tumors and are now cancer free and doing well, but scary to hear of those who have had recurrences after doing well. It was nice, though, to talk with people who really understand what you are going through because they have gone through it or are going through it now. It was really neat too to have "cancer warriors" (I saw that term on a shirt and really liked it) as well as those supporting the cancer warriors all in a group together. Overall, I really appreciated the group and I'm sad it only meets once a month.

Last week my love was also evaluated for occupational, physical, and speech/cognitive therapies with the outpatient program my love is going through. Many of the evaluation activities were quite tough, I don't think I would have done much better, if any better, than my love did, especially on the speech/cognitive stuff. We still haven't heard back from the outpatient program for the schedule, but they suggested 8-12 weeks, 2 times per week for each of the therapies. They suggested doing all three therapies back to back twice a week, but my love would rather not have OT and PT on the same day because of a lack of energy right now, which I think is very smart. You don't want to be so tried for one of the hours of therapy that you get nothing out of it or push yourself to hard.

We did lots of stuff with my love's family (immediate and extended) over the holiday weekend. My love's aunt, uncle, and cousin came in from Iowa, so we were around the family a lot eating delicious food, playing games, and otherwise have a good time.

Now we're getting ready for another busy week of appointments and life. Hopefully we'll be able to continue in a somewhat scheduled and regular routine.

A Great Day All Around

Well, as many of you know, yesterday was my birthday. I was a little apprehensive about how things would be this year since I'm in Michigan, away from most of my friends and family and we're all dealing with the stress of a lot of unknowns. It really turned out to be fantastic, though, thanks to lots of love and kindness from my family and my love's family.

On Sunday, my love's extended family got together and celebrated Mother's Day as well as my love's grandfather's birthday and they included my birthday in with the celebration. The day before, my love and I made my favorite birthday dessert (strawberry pie), and we enjoyed that along with cake after a delicious lunch of ribs. They even gave me birthday cards and gifts. I felt so included, which really meant the world to me.

Then yesterday, on my actual birthday, I got a call first thing in the morning from my sweet momma. Then my love and I got to go to Naked Plates (an unfinished pottery painting place) and painted a picture frame together. I'm excited to see how it turns out.  While there, my grandfather called me and wished me a happy birthday. Then I came home to cards from my grandmother and the choir I was a part of in Milwaukee. I got to talk with my grandmother as well. Then, after my love's radiation, my love's mom made us a delicious pasta alfredo dinner (which is one of my very favorite things). After dinner I went to my support meeting at Gilda's Club. This week's meeting was much better for me personally. Not only did I not have to deal with people telling me that I should be grateful for what I have and focus on the positive rather than feeling sad and scared and angry (which are perfectly valid emotions), but we also had a nice discussion and I felt like I could relate with a lot of the people in the group and that they could relate to me. After the meeting, I came home to freshly baked and iced, filled cupcakes that my love and my love's mom made for me. My love and my love's parents gave me really great and meaningful gifts and sang happy birthday to me. I also got to talk with my brother and sister in the evening, which was really wonderful as well. And several great people from Milwaukee texted me throughout the day to wish me a happy birthday as well. Not to mention all the well wishes from friends on Facebook. I felt so spoiled and special and included and well remembered all day.

I know it's probably kind of a silly and trivial thing, especially with everything else we all have going on right now with my love's illness, but it really meant the world to me to have a great birthday.

So thanks to each and every one of you that helped make my day great, and to those who are sending good thoughts and vibes my way all the time, I really appreciate it.

A New Countdown

My love started both radiation therapy and chemotherapy yesterday to attempt to get rid of any residual tumor cells. My love will undergo 30 treatments of radiation, scheduled at this time to end on June 26. During that time, my love will take a chemo pill each day for a total of around 42 days (it may be a little longer because of the Memorial Day holiday during which the Cancer Center is closed).

My love and I were both a bit nervous about potential side effects to the therapies, especially the chemo pill. I am happy to report that my love has had relatively few side effects thus far. So far the side effects from radiation have been headaches (possibly from the mask my love has to wear which is quite tight) and a metallic taste in my love's mouth after each treatment session. The chemo pill has caused my love's throat to be quite dry. We're very thankful that my love has not had issues with nausea as of yet, and hope and pray that the lack of nausea will continue. The majority of side effects from radiation usually occur 2-3 weeks after the start of treatment as the radiation builds up in the body, and I am unsure when the side effects from the chemo are usually seen, but I would guess that as it builds up in the body as well, there could be more side effects, but that is just me guessing. I certainly hope that the process will go smoothly with minimal side effects.

So yeah, my love has had 2 radiation treatments thus far, so 28 more to go! The countdown is on again!

Diligent, Dedicated, and Determined

I know I've said it before, but I have to say it again: my love inspires me!

Even though my love was frustrated and somewhat intimidated by all of the physical, occupational, and (especially) speech/language/cognitive therapy activities my love had to do in the hospital, and felt that the therapists did not get an accurate picture of my love's current capabilities, my love is still showing incredible diligence, dedication, and determination by faithfully doing the homework exercises given by the therapists.

Yesterday, my love did specific exercises to help with balance as well as quite a bit of walking for physical therapy. On top of that my love completed a speech/language/cognitive therapy activity that was very visually challenging with only one mistake (which is awesome because I probably would have missed more than that). My love also played bananagrams which is a great cognitive challenge for anyone, as well as an occupational challenge to pick up all of the little tiles. And my love not only played the game, but almost won (while I lost miserably :-P).

Today, my love has already done the standing balance exercises the physical therapist gave, as well as played a bit with the occupational therapy "thera-putty" and it's not even 11 am yet.

I am so proud of my love as I know the exercises are tiring and can be frustrating. My love is totally rocking it though and I know that my love will only continue to get better with such diligence and such a great attitude.

How Rude!

This is my second post in a row where I am ticked off with people... maybe I need more sleep, or maybe people are just rude... maybe both!

So my love and I just went to the grocery store to pick up a few items for a pie we're going to make and tonight's dinner. My love thought it would be nice to get out of the house and do some walking, which I think is totally awesome seeing as my love just had brain surgery less than a week ago. Way to get in some physical therapy my love!

Anyway, my love is currently using a walker to help get around as my love's balance is a little off right now. My love has previously expressed discomfort with going out in public using a walker, so I was doubly proud of my love for getting out and going to the store.

My love is amazing and always strikes a wonderful balance between being who my love is while still striving not to make people too uncomfortable. I don't know if it was because my love didn't want to make others uncomfortable or if my love's head was just cold, but my love wore a hat to the store.

So with hat and walker we made our way to the produce section and this kid who was probably around 8 years old gave my love this rude, kind of mean stare. Now this frustrated me quite a bit, but I tried to ignore it, especially since he was fairly young and maybe didn't know the appropriate response to something he wasn't used to seeing. Yes, probably a stretch and giving him too much benefit of the doubt, but yeah, I tried to get what we needed and move away quickly. But then, I saw that this kid's mother was staring at my love rather rudely as well! UGH!! And, to me at least, these stares didn't seem just rude (which is bad enough), but they seemed almost condescending. I seriously felt like punching them. I had hoped my love might have missed the stares, but of course that didn't happen because when we got to the car my love said that the degree of staring was unexpected. Knowing the jerks had made my love uncomfortable made me want to find them and punch them even more.

It just really makes me angry when people stare at those that are different, and maybe it upsets me so much because I know I've done it and I always feel terrible for doing so. I'd like to think that I do my best not to be condescending even if something does catch me by surprise, though. I don't know, I guess it just really frustrates me. Those people had no idea what my love has been and continues to go through, they just saw a young person with a walker. It is none of their business either. People are people, can't we start treating one another as such?!?

So yeah, next time you see someone or something a little out of the ordinary, please try not to stare. I personally think a smile doesn't hurt either. Maybe some people would disagree, and maybe I will change my mind in time, but I think encouragement in the form of a smile is a whole heck of a lot better than rude stares. I know that when we were in the hospital, it seemed to mean something in my love when people would give a smile as my love walked in the halls with the walker or said something encouraging. Yes, hospitals are a different setting, but I think we should treat people well and encourage each other no matter what!

Some Days Are Better Than Others

I like to think of myself as a fairly nice person most of the time...

Other times, maybe not so much! Like today, I seriously wanted to trip and/or yell at the physical, occupational, and speech/language therapists.... Probably not so nice.... But I'm sorry, when you test my love and it makes my love cry, it's frustrating to me.... Yes, the tears were because my love was unable to do things that were once easy, but seriously, you make my love cry, I want to make you cry....

So yeah, all three therapists suggested that my love go to an intensive inpatient rehab to work on more therapy stuff. I'm not so sure how I feel about that.... I know my love just wants to go home. We all want what's best for my love, we just have differing opinions of what that looks like I suppose. I'm just worried about it because my love is starting chemo and radiation Monday, and would be at this therapy rehab place for one to two weeks, and we have no idea how my love will react to to the treatment. Ugh! I just wish I could wave my magic wand and make everything better.

Tumor-Free Tuesday

Before going in for surgery, my love felt it was very important to keep positive energy around. With this in mind, my love looked forward to the day after surgery, saying it would be "Tumor-Free Tuesday."

I hate to say it, but I had my doubts. I didn't know if the surgeon would really be able to remove the entire mass as the last surgeon mentioned some obstacles. Thankfully, the surgeon is much more skilled and knowledgeable than I am and was able to remove the entire mass as well as some surrounding tissue in each direction around where the tumor had been without causing damage to my love's motor functioning. (For those of you who don't know, the tumor was situated very close to the motor strip on the right side of the brain, which affects the left side of the body's motor functioning.)

It is important to understand that the type of cancer my love has is one that has a tendency to project out from tumors into surrounding tissues (kind of like fingers), so there may be some tumor/cancer cells left. The doctor said we probably removed about 99.9% of the cells between the two surgeries, but we still have to be aware of the other .1% that may be lingering. This is why my love will still have to undergo radiation therapy and chemotherapy treatment and have frequent MRI's to see if anything tries to grow back. Basically, the goal is to kick the bad cells in the pants so hard that they go away and don't come back.

Anyway, today will forever be Tumor-Free Tuesday in my book. We are all so thankful to be going into treatment without a large mass that needs to be shrunk in order to go away.

Just to further update everyone and brag some more about my love, the surgeon said yesterday that my love was very helpful during the surgery. I think I mentioned in a previous post that my love had to be awake for part of the surgery. Well, of the 3 1/2 to 4 hours that the surgery took, the surgeon said my love needed to be awake for about an hour of it. During the time my love was awake, my love was asked to do things like smile and wiggle fingers on the left hand so that the surgeon knew he wasn't impairing my love's functioning. The surgeon said that many people stop responding and helping about half way through, but my love was a total trooper and was helpful the entire time my love's help was needed. I am so proud of my love and admire my love's strength and courage so much. My love inspires me!

So yeah, Happy Tumor-Free Tuesday to everyone!

Good Omens

I was talking with my love last night as it was storming outside (something that scares me a lot, but my love really loves and finds calming), and my love said that the rainstorm was a good omen.

I feel that my love was right, as usual. We just received word from the nurse in surgery that they were able to ressect all of the tumor and a little bit around it in each direction and that they are now just closing up my love's head. I'm so thankful that everything has gone really smoothly thus far. Granted, it's not done yet, but everything has gone well so far. I thank my higher power and all of those that were petitioning their higher powers or sending good thoughts or vibes or whatever you do.

It's still raining by the way, has been all morning and afternoon, maybe my feelings about rain will change after this :).

Slightly Overdue Rant

This post really should have happened last night when I was feeling particularly upset and angry, but it didn't. I still feel it is important to write about though, so that people might learn from the experience and just to blow off a little more steam.

So, last night at Gilda's Club, I attended the Family and Friends Support Group for the second time. The format of the evening was that we first went around and introduced ourselves and our situation, then the facilitator passed out cards that each had a question or sentence to finish on them for each of us to answer. My card said, "I am angry because...." Now, this whole process has been very emotional for me, and the past few days I have been particularly emotional due to hormones and stuff, so yeah, by the time I started talking about why I am angry in all of this, I was crying. My answer to the statement was something to the effect of: "I am angry because none of this is fair. It's not fair to be not quite 23 and have the love of my life diagnosed with serious brain cancer. I realize the situation isn't fair at any age, but that is why I am angry right now, because it's not fair." So yeah, I was crying pretty hard saying all of this, just angry and frustrated and scared, and one of the other people in the group has the audacity to tell me that really, I should be grateful for what I have and frame it in the positive. He said that some people don't even make it to 23 and a lot of people have to deal with stuff like this younger than 23, so I should be grateful for how good I've had it. 

Now, I realize there is some truth to what the man said. Yes, framing things in the positive is important. Yes, there are people who have dealt with this or other scary or tragic things at younger ages. But really, really!! My question was why I was angry; I answered it honestly. The absolute last thing I needed in that moment was some sort of guilt trip about how other people have it worse than me, so I shouldn't feel the way I feel. I'm sorry, but that is crap! I have every right to feel that this isn't fair. Guess what, it's not fair! Amazing people suffering isn't fair. Life isn't fair, I'm not saying it's supposed to be, but I should have the right to express my feelings. I have every right to feel angry and scared in all of this. Guess what, it's scary and it's hard and it sucks! Anyone who tells you differently is lying! That's how I feel, deal with it! 

Just so you all know, the facilitator did try to frame things differently, saying that it is possible to be both grateful and angry, and stuff like that. But yeah, I still feel the guy was totally out of line. I don't feel like he made the environment particularly welcoming. 

So, long story short, if ever you feel like telling someone who is going through a rough time that they should be grateful because there are people out there that have it worse than they do, please bite your tongue. If that mindset happens to work for you, by all means utilize it, but don't try and guilt trip me into feeling something other than my true feelings. Feelings happen, they are part of the process. There are many things I am grateful about, and I express those as well, but when I feel angry, I need to express that too. 

Anyway, I wish you all a day full of whatever emotions you need to feel, and the courage to express them, and a lack of stupid people that try to tell you to feel otherwise.

Just In Case I Thought I Knew What Was Going On... Surprise!

I really don't know why I think I can predict or depend on anything going as planned.

As you may or may not already know, my love is now scheduled for another surgery on next Monday, May 7th. The goal of the surgery is to remove more of the brain tumor. The idea of going through surgery again is frightening for all of us, but the idea of less, or hopefully, no tumor keeps us positive and hopeful. This surgery will be different from the last as my love will be awake for part of it, which is causing my love to be quite nervous and have bad dreams about it, which is no fun.

As of right now, radiation and chemo are still supposed to start on the 14th, which seems really fast to me, especially since last time my love had surgery the oncologist said they like to wait 3 to 4 weeks after surgery to start that stuff. Now the oncologist wants to stay on the same treatment plan, so I really don't understand. We have a meeting with him again on Thursday, so hopefully things will be explained more clearly then. I often wish I knew more about this stuff so I could know for sure that people are making decisions that are in the best interest of my love. I know my love feels like it's all happening really fast, I mean, we all do, but my love is the one going through the procedures and stuff, so it feels really fast for my love. I wish there was more I could do to make the process easier, but my love assures me that my presence is at least very appreciated.

Many times in my life, I've wished that someone could tell me clearly what things would be like and what would happen when. Some days, I feel like that more than ever right now, especially when things like surgery get thrown in the mix seemingly out of nowhere. At the same time, maybe it's best not to know, it gives me less time to worry then I guess.

So yeah, surgery is scheduled for Monday afternoon, sorry I didn't get this posted sooner, but we had to make sure that various family members heard about it from family first rather than from running across it on the internet.

Meeting Another Specialist

We got a call today that we've got an appointment with a Neurosurgeon this afternoon. We knew we were going to have a meeting with one, but didn't know when, so it was kind of a surprise.

I don't know why, but for me surgery is the treatment option that scares me the most. Maybe because I'm not the one that has to go through it, or maybe because we've been through it once and it was tough to handle. I can't erase from my mind what the night of the last surgery was like. Feeling like pacing the halls every moment my love was in the operating room. Afterward, my love crying out in pain and fear, with me feeling so helpless. Watching my love each day struggle to regain full control of movement. The late nights, the nightmares my love had, negative reactions to medications. It was just not an easy time. Selfishly, I don't want to go through that again. I also don't want my love to have to go through that again. Plus, there is always risk involved, risks I'm not a huge fan of.

So much of me wishes I could just wake up from this nightmare, that I could go back in time and somehow prevent this mess. Alas, here we are with no way of doing so, so I guess "if wishes were horses, we'd all be eating steak." I just don't feel ready for all of this.

"The Countdown is On"

17 days... seems like both an eternity and the blink of an eye. In 17 days I will be 3 days from turning 23 years old and my love will start radiation and chemotherapy treatments for brain cancer. I still can't believe I'm writing those words. I'm still in shock, yet in 17 days it will happen whether we're ready or not.

We went to the simulation appointment today that was set up by the radiology oncologist. Radiology therapists explained the process, showed us around, made a mask of my love's head to hold it completely still during treatment, took a CT scan, and gave my love a little dot tattoo so that everything will be lined up perfectly each time. I had the opportunity to go into the simulation room with my love for all but the CT scan and tattoo. It was really intense for me. According to my love I acted "awkward," but I don't know how else to act but kind of shocked and scared because that's how I feel. Apparently it wasn't as big of a deal for my love as it was for me, at least that is what my love says. 

After all that, we met with scheduling and they said treatment will start at 2:30 on May 14th. We know that the Oncologist wants it to happen sooner, so maybe it will be less than 17 days, it's hard to know for sure. But 17 days at the latest. 

In my love's words, "The countdown is on...."

Support Groups and Mohawks

Well, yesterday was a bit of a long day. I really wasn't at the house much at all.

In the morning, I went to Gilda's Club hoping to attend the kickboxing class they had on the schedule. Sadly, the instructor wasn't there, so I ended up doing an "open exercise" group thing where myself and a handful of middle aged to older women worked with weights and exercise balls and such. It was fine, but not what I had been hoping for.

I then came back, showered, ate lunch, and then it was off to the Oncologist appointment. Unlike the Radiology Oncologist appointment, which was very specific, the meeting seemed rather vague, like all of these things related to chemo are going to happen, but we don't know when exactly and we want to move the radiation up as soon as possible instead of waiting the two weeks. The oncologist is just kind of different personality wise.... Oh well I guess. He also didn't really explain what to expect with chemo, while the Radiology Oncologist did a really good job of explaining what to expect and the risks of radiation. He also seems like he's in a hurry all the time, which is frustrating for me.

Anyway, after that I went back to Gilda's Club and hung out for a while before supper and the support group started. I can't really tell you what I was expecting from the support group, but somehow it was different from whatever I was expecting. I guess it was really weird because people were all in different stages of supporting loved ones through cancer. Some people weren't in the group this week and will be moving to a grief group because their child just died of cancer. Others were supporting people who were dying. That was really intense and scary for me. I mean, we are so new to all of this, I guess I try not to let myself think of the disease as potentially fatal most of the time. Others were supporting people who were doing quite well, so that was nice to hear, others were more in limbo of waiting to see what effect the treatments would have. The one thing I really took from group, though, is that this first month is really hard and what I'm feeling is normal, just being stressed and overwhelmed and all that, which I appreciated hearing. I do hope and pray that as treatments start that it will be easier in some ways, at least that there will be a regular schedule and hopefully things will get continually better. Maybe I'm too optimistic, but at this point I don't care if that's the case.

When I returned home after the meeting, I got to snuggle and watch Princess Bride with my love and my love's family. Now, Princess Bride is one of those movies that I strongly associate with sleepovers with my love and our friends when we were younger. I had never even seen the movie until I met my love. So it was wonderful, but made me feel a lot of longing for times when life was simpler, or at least now it seems that it was simpler. So yeah, it was bittersweet.

Today my love finally got the Mohawk that my love has been wanting. Apparently my love posted pictures on Facebook, so if you are friends, you should check it out. My love looks pretty bad @$$ if I do say so myself :). The Mohawk was also bittersweet. My love has wanted one pretty much forever, but is sad that it will most likely fall out with the radiation and chemo. It's also sad that it has taken cancer for my love to say to heck with everyone else's opinion and get it done. It's also a bit weird because now you can see the scar from surgery really well, which just makes things feel a little more real. Regardless, though, my love looks good and enjoys it I think, which is great.

Well, we're about to be off to another appointment. This time to get prep work done for radiation. I'll try to continue to keep ya'll posted. Until then though, live each moment to the fullest!

Shell Shock, Laughter, and Butterflies

The past couple of days have been a bit of a strange combination of emotions.

Yesterday afternoon, we had our first meeting with the Radiology Oncologist and it was quite intense. He did a very good job of better explaining information about the tumor (the type and what all that means) as well as the radiation portion of treatment. It was just a lot of tough information for me to swallow. I mean, I guess I felt like I had some understanding of stuff, but I specifically hadn't gone looking for a lot of information in part because I didn't know what I'd find and how accurate it would be, especially in my love's specific case. Yesterday's meeting provided clarification, but I left feeling much like I would expect someone to feel with shell shock. Hearing things like grade 4 tumor, stage 4 cancer is stressful and scary. I am one that when I hear stressful and scary information, I just want to be held and I need to talk about it and cry. My love is not that way all the time. Yes, my love appreciates physical touch and hugs and all that, but often needs space with difficult things. So yeah, I just felt really scared and kind of stuck.

When we got home, my love wanted to watch some old Saturday Night Live featuring Gilda (Gilda's Club's namesake), and throughout that I just felt more and more distant, overwhelmed, and uncomfortable. After watching several clips, I planned on going to make some phone calls to process things, but my love didn't want that either as it makes my love feel uncomfortable knowing people are going off and talking about my love's situation. So, instead of getting to go upstairs and talk and cry, it was requested that I would watch Back to the Future with my love and my love's parents. I'd never seen this movie before and we had been talking about watching it for some time. Thankfully, my love and I talked a bit before the movie and my love felt comfortable sitting close and snuggling. I needed that comfort and closeness, so I was really glad my love wasn't needing as much space as originally thought. Back to the Future is also quite amusing, I found, which I thoroughly appreciated. It was just a nice distraction and it was good to laugh.

Today, we went to the Meijer Gardens. It was quite lovely. We walked outside through the sculpture park, me and my love's mom taking turns pushing my love in a wheelchair. It was somewhat relaxing looking at the flowers and sculptures and hearing the birds. My favorite two sculptures were "Torso of Summer" and "Aria" though there were many that were very neat. The butterfly exhibit was also going on right now at the Gardens. When we lived in MI, my sister got to go to the exhibit on a school field trip, but I hadn't gotten to see them. It was really neat to finally see them and enjoy the beauty of the butterflies. I've always loved butterflies, but since getting that journal from my love and making this blog, they mean even more to me than before.

So yeah, from shell shock to laughter to butterflies, on continues the roller coaster ride that is my present state. I'm half terrified and half excited to see what tomorrow will bring. Until then, I guess I'll enjoy the ride as best I can.

Introduction to Gilda's Club

Well, thanks to some great people in my life, the move out of the apartment went smoothly. I'm so thankful to my family and friends for all the help provided. It was certainly sad to move out of our first home, but I am sure there will be more to come. 

I'm now back safely in Michigan. Last night, my love, my love's parents, and I went to the Gilda's Club that is here in the area for the new member meeting. It was really nice. I am very much looking forward to getting involved with the support groups and activities that they have available. We all signed up to attend the group that meets once monthly specifically for those affected by brain cancer. Sadly, it just happened last week, so it will be a few weeks before the next meeting. I personally intend to attend a weekly support group, but as I am unsure of our schedule at the moment, I have not signed up for anything specific yet. I hope to have a more concrete idea of when things will take place by the end of the week after meeting with the oncologist and radiology oncologist so that I can start getting involved in a group. I know that support groups have been very helpful for me in the past, so I am looking forward to having that sort of support through this as well. The actual house and grounds of Gilda's Club are really beautiful and comforting to me personally. I look forward to it being a place of comfort and healing. 

We meet with the Radiology Oncologist today, so we are all a bit nervous about that, but hopefully it will provide us all with a better picture of what is to come. 

One more tidbit of info... my love is set to get a Mohawk on Friday. My love seems pretty excited :).

Going Home... or At Least the Place We Used to Call Home

In less than an hour, I will start my drive back to Milwaukee from Michigan to pack up the place my love and I called home for 10 months. Let me preface all of this with the statement: I hate moving! My family moved 10 times before I turned 18 and I've sworn several times that I am going to settle down and stay in one place. I seem to keep breaking that promise to myself. But yeah, this time I really thought we'd stay at least in Milwaukee, even if not in that exact apartment, for quite a while. Surprise! Certainly my love's health comes first, and I will go wherever needed, but it is always weird and hard to move. Packing all your possessions into boxes is just emotional, especially when you don't know when you will see them next. It's also going to be really weird to be home alone. When I arrive today, my family won't be in town yet, and my cat is already gone, so yeah, it will be weird. Anyway, I've got to hit the road... bring on the weirdness I suppose.

Tying Up Loose Ends

Emergencies are kind of a pain.... With this whole situation there was very little time to prepare for my life to completely be altered. I'm really not trying to complain, it's just frustrating when you uproot yourself abruptly as it has a tendency to leave loose ends. I'm trying to tie some of those loose ends up today and this weekend.

I called Alverno today and left a message for the program director who is also my professor. I wrote her an email not too long after all this started asking about taking incompletes for the semester, but I still haven't heard back from her, which is stressful as I really don't want to flunk out of the program because of a family emergency.

I'm also trying to figure out everything that needs to happen for moving this weekend. My wonderful parents and sister are coming up to help me move, so we'll have 3 cars, but the biggest one is a small SUV (Ford Escape), so I don't think it will fit a lot of the furniture that needs to be moved (not that we have tons, but it is kind of bulky stuff). So I'm trying to get quotes for various moving equipment which is a bit stressful and expensive, but probably worth it. My mom is really concerned about having enough strong people there to help as she does not want my dad killing himself trying to carry heavy furniture. I'm considering hiring the "Two Men and a Truck" moving company as we would then have professional movers to take some of the pressure off my family and friends and our backs, but I don't know if that's the best option. Blah, decision making.... So anyway, if ya'll have any suggestions, let me know. Yes, my family has done our fair share of moving, but it was typically with professional movers paid for by my dad's new company, and I've never had to be the organizer of stuff, so yeah, it's a bit of a new experience.

24 Hours of More "Firsts"

Last night at 5 pm my love and I and my love's parents attended our first meeting with an Oncologist. I was so nervous all day waiting for the appointment, unsure of what it would consist of. I made sure to take some notes as it was quite emotional and needed to get the information straight. The Oncologist explained about the difference between a glioma and a glioblastoma and that he is requesting the actual tissue to have his own pathologists look at it and make sure they come up with the same results as to what kind of tumor it is. I thought that was interesting and good that they are being so thorough. The Oncologist also said that they normally shoot to start radiation 3 weeks to a month after surgery, so it sounds like they will try and start radiation in about two weeks. The radiation will happen over 6 to 7 weeks getting up to a fairly high dose. My love will also need chemotherapy, taken in pill form. It sounds like the chemo will start sometime during the radiation treatment and will be once a day with radiation, then five days a week every four weeks for up to a year after radiation. They are going to have my love go for another MRI on Friday evening to get a baseline and see what it looks like after surgery. We're also scheduled to see a Radiology Oncologist next Tuesday to talk more about treatment and what that will look like. My love will also meet with a neurosurgeon here in the area in case additional surgery is needed at some point, though it does not sound like that will be the first course of attack. It's a lot of scary and intense information that is hard for me to type even now.

Another first today, I met for the first time with my new therapist. She seems okay. We didn't have any sort of immediate connection, but sometimes when you need someone at the last minute, you take what you can. I didn't have any major aversion to her either, which is good. Hopefully she will be able to help me through this journey. I really just need a place to go and talk and sort things out. She made some good points, so I'm hopeful about our therapeutic relationship.

Anyway, a couple firsts in the last 24 hours.

Checklist for Myself

One thing I've learned over the years (often the hard way) is that I have to take care of myself or I cannot be of any help to anyone else. Thankfully, through the last couple of weeks I've had a lot of people who care about me help me take care of myself. It's wonderful to know there are those kind of people in your life.

Since moving up to Michigan late last Wednesday, I've been wanting to get some things together for my personal mental health. Today I accomplished part of that checklist, which feels really great.

First, I found out about a resource for people affected by cancer in the Grand Rapids area through the mother of a friend of mine. It's called Gilda's Club and it looks amazing! Not only do they offer weekly support meetings for both cancer patients and family members, they offer tons of other classes and groups as well, everything from watercolors and other art classes, to craft classes, to exercise classes and it's all free of charge for members. The best part of it is that there are no membership fees, it's more a commitment to try out some of the groups for a while that makes you a member. I could just cry I am so grateful! I was specifically thinking about looking for some sort of exercise classes and maybe art classes to get involved with, and now they are right in front of me and I don't have to figure out how to afford them. So I'm all signed up for the "New Members Meeting" next Monday, which I'm really excited about.

Second, I set up an appointment with a therapist today. Sadly, the person that someone gave me a referral for is booked until at least May. I know myself, and I just can't wait that long at the moment. So I asked the receptionist if there was someone else with similar specialties that I could see, and I now have an appointment for tomorrow, which I'm hoping will be really good for me.

Last major checklist item I completed today was putting in my 2 weeks notice at work. I'm really just thankful I'm not trying to be a caregiver for anyone but my love right now, as I would probably be an emotional wreck and not very helpful to my clients.

So yeah, pretty good day all in all, important to take care of me through all this.

Peace Be With You

Yesterday we went to the church my love grew up in for Sunday service. It was lovely, but somewhat difficult too. I know it was awkward for my love a bit as the prayer list included my love's name.

I thought going to church might be rather weird for me as I am still trying to figure out what I believe after distancing myself from the church of my childhood. One thing that I have always connected to, though, are hymns. I love hymns. I think they are beautiful. Yesterday, there were quite a few musical numbers as part of the service. One was sung by a soprano as a solo. I know I have heard the hymn before, but I particularly appreciated it yesterday. It is called "O Rest in the Lord" by Felix Mendelssohn. The words struck me the most, they said "O rest in the Lord, wait patiently for him, and he shall give thee thy heart's desires. Commit thy way unto him, and trust in him...." (emphasis added by me). It's hard for me to trust sometimes, and hard for me to wait patiently, but I definitely have important desires in my heart that I want heard, so I guess I need to try a little harder with the trusting and waiting. Another hymn I appreciated was called "Savior, Like a Shepherd Lead Us" from the United Methodist Hymnal. The first verse says, "Savior, like a shepherd lead us, much we need thy tender care; in thy pleasant pastures feed us, for our use thy fold prepare. Blessed Jesus, blessed Jesus! Thou has bought us, thine we are." I don't know, I guess I've just always liked the idea of Jesus as a shepherd, watching over us and caring for each one of us, and I can certainly use tender care right now.

The sermon itself was all about peace. The topic was "Peace Be With You," which I could use at the moment. As part of the "Children's Time" the pastor talked about different words for peace. One of the words he mentioned was "shalom" and he said something to the affect that shalom not only means peace, but also completeness. I wish I had written down exactly what he said, but it really touched me. I guess it reminded me that I believe everything happens for a reason, and that through a higher power I can feel peace and completeness and that maybe, just maybe, for some reason we're where we're supposed to be right now and everything will be alright.

Anyway, it was just kind of good to go to church. I wish for peace to be with each of you, and with me as well.

Promises to Keep

A few weeks ago, my love and I were laying in bed talking before going to sleep and my love asked me a question. My love said "Will you marry me before I die?" Now, this was not a particularly unique question, as my love likes to ask me "Will you marry me?" and "When?" I, of course, always respond in the affirmative and tell my love we can get married any time, but that I want a pretty dress when it happens. This particular night, though, my love asked, "Will you marry me before I die?" and when I said yes, my love said, "Promise?" I said of course and my love said, "No matter what happens?" I of course reassured my love that no matter what happened we would marry before my love died. At the time, I thought very little of it, after all we're in our early 20's, death seemed so far away from the realm of possibility. Through the last week and a half, I've been thinking about that promise, though. I still have no doubt we will get married, me in a pretty dress and my love in a top hat with a pot luck reception just like we each have wanted. I just pray every moment of every day that it doesn't have to be soon, I'd love for it to be soon, I just don't want it to have to be.

In the hospital, right after the surgery, my love was having a really rough time, a combination of anesthesia, medications, brain surgery, pain, and who knows what else. That night, I sang to my love for several hours straight, the same two lullabies over and over again, nonstop, it was one of the only things that helped keep my love more calm. During that time my love looked at me and said, "This is why I want to marry you." It was so sweet. My love later asked, "Will you marry me?" I of course said yes as I always do. My response made my love, who was a bit out of it, very happy, and throughout the night my love informed parents, nurses, and friends (basically anyone we came in contact with) that we were going to get married. My love also asked about having a potluck reception. My love has wanted this for a long time, but I've kind of been hesitant as many of our guests will have to travel. With all that happened those couple days, I realized how silly I was being, and how all that really matters is our happiness, so I promised my love that a potluck would be in order. So yeah, it will be amazing. Anyway, I still have no idea when or where this wedding will happen, but if anyone finds great deals on wedding stuff, keep me posted, and remember, I want a pretty dress :).

Themes in Life

I was talking to my love on the drive up to Michigan about a certain theme in my life. I realized that a kind of sad theme from my life is not realizing how good I have things until I move away.

I'm really not trying to be depressing or anything, quite the opposite, I really am trying to say thank you.

A little back story on this theme, my family has moved 10 times while I was still living at home, and with every move from the time I moved from Michigan I realized only after I moved just how amazing things had been. I enjoyed my time in Michigan, don't get me wrong, but I didn't realize just how much I loved everyone and how good of friends I had until I had to leave them. The same thing happened when I moved from Illinois to Texas, and so on.

Well, that happened this last week as well. During my time in Milwaukee, I felt a little out of place at times. I felt like I didn't really have friends of my own at times, just friends of my love who were also kind of my friends. This last week I realized just how true of friends that not only my love had in Milwaukee, but also how true and amazing my friends are, and that my love's friends were also truly my friends. The fact that I could call someone at one-o-clock in the morning to go to my apartment and bring me my medications was amazing. People who would come and just sit in the waiting room, not even getting to go into the room, but still coming just to support made me cry grateful tears. People providing food, and love, and support throughout this week from Hell, made everything a bit more bearable.

When we drove out of Milwaukee on Wednesday, I really felt like crying just because I realized once again how good things were a little later than I had hoped. More than anything, though, this post is a thank you to everyone, people near and far that have supported me, but also especially to those in Milwaukee, thanks for being such amazing friends. I look forward to seeing you all again soon. Now I know how blessed I am and what good friends I have, both near and far.

Still in Shock

It's amazing how much can change in a week, a day, an instant. The past 8 days have been some of the longest and most challenging of my life, and they sadly only mark the beginning of a long journey yet to come.

A few years ago, I honestly can't even remember exactly when, Alicia gave me a journal. It was a blue hardcover book that had white writing on the cover. The writing said something to the affect of "Just when the caterpillar thought the world was ending, it changed into a butterfly." It was very special then as I was going through some tough times in my life and needed that reminder, but I honestly feel I've never needed that message more than now. I am praying now more than ever to see that transformation happen in my life and his, to be able to find beauty and peace on the other side of this. So yeah, that's where the blog title comes from.

I apologize to anyone who reads this, as it may be very disjointed, but that's just how things are going at the moment.

Last week Wednesday I heard some of the scariest words come out of a doctor's mouth that exist: "we found a tumor." It took almost a full 24 hours for those words to actually hit me. Up until that point, it felt like a terrible dream, like it couldn't be real. How could my 23 year old fiancee have a brain tumor? It just didn't seem possible. In some ways it still doesn't.

Well, I will write more in a bit, I can only handle so much at once.