Filter

I view this blog as my cancer journal. Since it is shared there is a light filter which in turn makes me self-conscious at times about what I want to say. It makes me think about whether or not I'm being too repetitive or if what I want to say is going to affect someone else.

There are days when I care less about the filter and I think what I have to say reflects such. There are other days when I choose to write about something entirely different than what is really on my mind because of the filter. The reality though is that this is my place to choose what I want to talk about and when. My readers get to choose if they want to listen. I see it as a win-win.

In the real world we all know that it isn't this easy. People ask us all the time how we're doing. How I respond reflects how I really feel, but it is usually sugar-coated. I think Geoff pretty much does the same thing, except when people ask how he is doing.

I've watched him. He doesn't really know how to respond. He has a long pause and then tries to say something about being tired, but doing ok. He knows people care, but he also knows that most people don't want to know that he is "cooked." He just has a harder time hiding it.

He doesn't want to tell me because he thinks I have enough to deal with. I know it though and he knows I know. I try to do things to make his day easier and he responds by doing the same for me. We both stay up too late trying to lighten the load for the other one.

I'm constantly nagging him to get more sleep. He acknowledges me, but we both know that there is a finite number of things we have to get done each day and neither one of us can manage it all right now.

And this is how it begins...We talk. We talk all the time. But there are so many things that go unsaid between us. Things that neither of us want to say or talk about.

I finished a school project this afternoon so we planned to have a couch potato night. Ephraim used the potty all day so he and I had a deal that he could watch the Polar Express on one of our laptops while Geoff and I watched what we wanted from DVR on our tv.

After seeing footage of Sandy on the computer and on tv we both were wishing we could do more to help and overwhelmed by the intensity of it all. It was definitely a comedy night. At the end of the night we decided to finish up a show that we had watched part of the other night. It's a British show that is on PBS. It's really more of a mini-series that takes places in 1950's England.

One of the story-lines this week involved an older couple dealing with terminal cancer. We forgot about this when we decided to finish up the episode. Both of the couple were trying to protect the other one from the inevitable pain. When the man finally died we both looked at each other through our tears.

Ok, first of all...Geoff doesn't normally cry watching tv. Second of all, the story-line was sad, but really neither of us was that invested in it. Third of all, I'm not going to die!!! (you hear that cancer?!?!?). We know this, but we also don't talk about what if I did.

There have been times where I've said "if anything DOES happen to me, tell so-and-so this...or make sure the kids learn this..." We had one fall-apart conversation very early on when Geoff told me I have to live to go New Zealand with him and that he promises to get me a goat (eventually)...There was more, but you get the point.


It seems like ages since that conversation and I guess we were due. There were words tonight too, but not many. It was just more of us both acknowledging our emotions and our fears that we normally try to filter out. It didn't last long before Ella was demanding our attention and we were reassuring each other that everything is going to be just fine. Next thing you know we were swooping the kids off to bed and trying to finish up with our approximately 1 million things we need to do before we go to bed each night.

In reality I will be fine and we will be fine. We are fine. Geoff admits that he is "cooked" and I would agree. At the same time, we'll pull through it all and tonight we'll go to bed and just snuggle up a little closer and tighter.

Cancer chain quote of the day:

"Every evening I turn my worries over to God. He's going to be up all night anyway." -Mary C. Crowley

Overwhelmed

Things seem to have shifted since all of this began. I had anticipated that the worst of it all would be while I was getting treatments, but that hasn't necessarily held true.

I can't decide if I'm feeling better overall now, or during treatment. Probably now, but the hands/feet thing is still driving me nuts. I'm more exhausted than I was and I'm still nauseated plenty of the time. My food choices have changed and some things just don't taste the way they used to.

I really really want to live like I'm cancer free, but my body is still trying to heal from all the toxins and it frequently reminds me that it isn't ready to do all the things that I think it should be able to do.

With small kiddos, a zoo, and a torn apart house this makes things hard. Then factor in that I'm behind in school and trying desperately to catch up. People keep telling me to take time off, but this is all I have right now. I need to keep going or my chemo brain will take over.

It will all work out. It always does, but right now I can't always see the light at the end of the tunnel. I just want to sleep and I need to get homework done. I need to get caught up so I can start working ahead. It's the only way I can figure to manage surgery into the mix.

For now though, I'm going to prioritize that sleep.

Cancer chain quote of the day:

"Don't tell God how big your mountain is...tell the mountain how big your God is." (weird how these quotes always seem to apply)

10,000

I've had this blog for about 3 months and by this time tomorrow I will have over 10,000 page views. I doubt that is very many in the world of blogs, but to me that seems like a lot. It definitely exceeds the expectations I had when I started all of this and all I can say is thank you. Thank you for taking the time to follow my (our) journey, thank you for caring, thank you for your time, or simply, thank you.

This weekend turned out to not be what I expected on many levels, but that seems to be my life lately. As Geoff mentioned I really didn't feel well Friday and even early Saturday.

This weekend was the annual Halloween party at Hound Huddle, the doggy daycare our pups go to (aka our pups' other family...Hound Huddle has been amazingly supportive of our pups and us and we don't know what we would do without them). I'm going to admit that this is one of my favorite events of the year because it is a celebration of one of my favorite holidays and we get to take our kids and pups in costume. We usually try to come up with some crazy family theme. A few years ago we did a Harry Potter theme. Geoff was Harry, I was Ginny Weasley (of course), E was Dobby, the house elf, Esther was Fluffy, the three-headed dog, and Jeffy (the greatest dog ever) was Hedwig, the owl. Last year we did an angry birds theme.

Geoff and I usually have a lot of fun planning and making our costumes and it's kind of our thing. It's our we don't go out and party anymore, adult/family thing. This year I came up with an idea that was lower key. We both thought it was funny and we were excited about it, but we knew we didn't have the energy to put into anything elaborate. This was the perfect idea. I planned to make the costume accessories that we needed Friday night, but instead I crashed. I hoped to make them Saturday morning, but I still just couldn't do it. The party was from 11-1 and we made it for the last 15 minutes.

We realized it was basically stupid to go by that point, but we just couldn't skip it all together. Our dogs didn't care that they didn't have costumes, they still ran around like nuts. The kids didn't care, either. E is always excited about any excuse to get to go to doggy daycare. They have climbing kid toys for the dogs outside and he gets to go inside and outside at will. We had to bribe him with M&M's to get him to leave. Ella wasn't quite as invested, but she enjoyed watching the dogs and she totally capitalized on the M&M's when she realized what E was getting (it doesn't take much).

After the party we took the pups back home and headed back up to Madison to check out some non-big box stores for flooring and bathroom renovations. Many of the bathroom stores had closed at 1 on Saturday which we found to be frustrating. Then we went to one of the big flooring stores and the person that came to help us obviously had no interest in "helping us." He gave us a few tile samples and sent us on our way. We wanted to ask questions about carpet vs. laminate floors for the living room, but he was long gone. So we left.

We went to the kitchen and bath store next door to peek and found the complete opposite. The person that helped us there asked us if it was ok with us if she showed our kids the play area and even put in a "m-o-v-i-e." It's not that we didn't see through what she was doing, but we appreciated it. She worked up an entire bathroom for us and sent us home with sample cupboards, tiles, counters, etc. She is also coming tomorrow to measure everything and give us an estimate. She'll be here a few hours after the adjuster is here. She was the surprise highlight of our weekend. She was so nice and helpful. Eventually we told her that I have cancer and she almost started crying. She shared with us that her daughter has cancer too, not the same kind, but she also has a little girl that is a few months younger than Ella. She also had to wean her daughter because of the cancer and there were a lot of other similarities. The bathroom mess has been overwhelming, but we know who has our business for fixing it and we feel confident that we will be taken care of.

The other highlight of our weekend was having Geoff's mom and grandmother come for a few hours today. Geoff's mom leaves to go home to Abu Dhabi in a few days, and Geoff's grandmother hasn't been to our house since well before Ella was born. They were only in Madison for a few hours, but it was enough time to get brunch and then gut pumpkins. We carved one while they were here and sent that one home with Grandma (we decided she needed a pumpkin and we wanted to share).

These really were the highlights of the weekend for us. Everything else just didn't seem to work out quite the way we needed it to. E didn't want to go to Sunday school today. We were late enough for the kids swimming lessons that we decided it wasn't worth it. I didn't finish as much homework as I needed to/wanted to. E seems like he isn't really feeling well again and I definitely am not. None of this was major, but it left us feeling like our weekend wasn't the productive weekend we had planned or that we feel pressured to have right now.

Did I mention that I received the pre-approval letter for my tentative surgery? Seeing it in writing made it seem more official and less tentative. We're still hoping and praying...

Cancer chain quote of the day:

"I like to tell everyone that God is not "putting" me through this --but He is "bringing" me through it."

C is for Unexpected

Hi, this is Geoff. You might be thinking that the title tonight is kind of stupid, and you would be right. It reflects the fact that we (Gin and I) are also kind of stupid sometimes. As Gin said last night, she wasn't feeling so hot. This is an early contender for understatement of the year. It was highly reminiscent of a bad chemo day. There are several theories as to what caused the regression. Most likely, it is due to aftershocks of chemo and/or radiation, as we were warned that would happen. However, it probably didn't help that Gin decided to spend most of her day yesterday running around Madison doing errands.

Don't get me wrong - you can definitely get a little cabin fever cooped up in our house right now. The dehumidifiers/blowers didn't help (good news on this front in just a minute). So, I can understand wanting to get out of the house. Funny thing is, we decided to basically repeat this today by going out and looking for bathroom stuff almost all day, and basically running ourselves in the ground doing that. Smart move, team.

Good news is, while Gin is a little run down, she is not doing nearly as bad as she was yesterday. More good news (eluded to earlier), the blowers/dehumidifier are gone. No more noise, no more terrible smell, and no more water. Good times, and time for a good night's sleep.

Cancer chain quote of the day:
Cancer is journey, but you walk the road alone. There are many places to stop along the way and get nourishment - you just have to be willing to take it. ~Emily Hollenberg

Today

I'm not feeling well tonight and all I care about is going back to sleep. I'm not going to write anything tonight, but I will include a cute pic of Ella.

Cancer chain quote of the day:

"Courage is being afraid but going on anyhow." -Dan Rather

Smile!

I have been trying to refocus on school today. Reading textbooks and journal articles and reminding myself that I only have 9 weeks of classes to go. Really. After this there are other classes, but mostly clinicals. This is my last didactic term of midwifery school.

I can do this.

The best part is...the more I read, the more I get sucked back in. I really love this and I get it (well, most of it). This is what I'm meant to do.

That's it. I have nothing more profound today. I have no thoughts on cancer right now and I'm just fine with that.

I saw a quote on Facebook today that I felt suites me:

"SMILE. Let everyone know that today, you're a lot stronger than you were yesterday."

It's true.

Cancer chain quote of the day:

"We must embrace pain and burn it as fuel for our journey." -Kenji Miyazawa

Better

Today was better.

Actually I'm not sure if it really was or I'm just over everything right now. I finally slept last night so that helped. I was also fortunate enough to get both kids to sleep at the same time this afternoon so I could take a much needed nap. I got a good hour or two before some political polling surveyor destroyed the magical sleeping ambiance.

The water damage people came and ripped out chunks of our house. We have no flooring in the one bathroom, but overall I don't think that room looks too bad. The living room below is missing a chunk of ceiling, insulation and all. Currently it looks like a quarantine facility out of a movie. The damaged part of the room is sectioned off with thick plastic (think Dexter-for those of you who know what I'm talking about) that has a zipper in the middle for entry. The carpet was ripped up in that area and actually the horrible carpet at the bottom of the steps suffered water damage too (I am a little pleased by this). The drywall has had holes drilled into it to air it out, but so far no drywall was removed. I think that's a good sign?

Overall it still looks terrible to me, but the water damage people say it's actually pretty mild. They said it only takes 3 days for mold damage, but since we caught it so fast and it was all contained we should be ok. We currently have two (each) industrial strength blowers and dehumidifiers going in our house. They are noisy and HOT, but it's only for a few days so really not a big deal.

Since the weather outside is so nice and our house is unusually warm we have all the windows open and window fans going everywhere. Our neighbors probably think we're nuts (and they are probably right).

The other exciting news of the day was that our wienie pup, Wilco, finally had his screening for doggie daycare. He has little dog syndrome and thinks he's a tough guy so I've been putting it off in fear of him failing. I wouldn't say he passed with flying colors, but he did well enough that we tried about an hour and a half of daycare today. Sounds like he did well. I'm pleased because he barks constantly when people are at our house and he needs an outlet for his energy right now. I don't have as much energy right for exercising him so this is a nice option for him and us.

On that note, I'm going to attempt another night of good sleep to boost my energy and morale.

Cancer chain quote of the day:

"To fear is one thing. To let fear grab you by the tail and swing you around is another." -Katherine Paterson

No more happy place

So yesterday I mentioned that one of our toilets flooded while we were gone for a night over the weekend. We have never had any problems with any of our toilets before, and even now, no problems. Geoff called the insurance company yesterday to file a claim and before they could get an adjustor here they suggested having a contractor come to see there is still water under the floorboards to stop any more damage from happening.

She had a special tool that she aimed at the floor in the bathroom and the ceiling in the living room below the bathroom. Initially she said there was no standing water under the bathroom but then realized her meter was on the wrong setting. She rechecked the bathroom and soon after I was swearing profusely in my head. Then we went downstairs and the news didn't get any better.

So tomorrow morning she and her team will be back. First they are going to rip the flooring out of the bathroom and pull up the "kick boards" under the vanity. They will drill holes along the edge of the vanity and use some other "equipment" to dry everything out. This equipment will inhabit our bathroom for a few days.

We won't really know the extent of the damage until they start ripping everything apart, but what I do know is that we only have one bathtub. Our master bath has a shower and the other bath is just a half bath, so the kids will have to adjust to showers for the time being.

Ok, so will I. Well, I mean I take showers everyday, but baths are what I do to relax. Baths have been my one constant through all this. Chemo days I would come home and soak in the tub until I was forced to get out from being physically ill. Usually in the middle of the night everything would start to settle back down and I would soak again. I also have to admit I lost a high percentage of radiation stickers to soaking in the tub. Now I don't even get my bathtub. (enter more cuss words)

I can't verbalize how ticked off I am right now and that's only the bathroom...

In our living room we have a nook that we have turned into a playroom space. That is toast too. We finally got around to painting it at the end of July just as all of this cancer stuff started and now a good chunk of the drywall will have to come out. We can't use the lights in the area, because they might be soaking in water and an approximately 6 foot section of the ceiling is going to have to be ripped out. Of course the water didn't stop with the ceiling, it soaked through and now the carpet in this region has to be pulled up and all the foam padding underneath needs to be removed.

The person wasn't sure, but because the carpet continues throughout the rest of the room and to the stairs going upstairs she predicts the insurance company won't pay to replace the carpet. (more swear words)

To add insult to injury I was working on the bathroom in question. I have most of the painting done and I had wanted to change the flooring anyway, but now wasn't the time. If I was going to change the flooring I really wanted to change the vanity/sink too and in my dream world I would put in a different tub. Something just a little deeper and maybe a titch bigger for soaking.

My other priority home improvement project was to replace the carpet in the living room. The carpet on the stairs is gross and the carpet at the bottom of the stairs is beyond gross.

I'm trying to be happy that I'll probably get a new bathroom floor, but today I'm frustrated. Retail therapy is my favorite kind of therapy and right now when I really need it, I can't. We had to stop at Menards tonight for some bungy cords and I tortured myself by walking through the bathroom section. I added up how much it would cost to make the changes I want and it wasn't that much (for working Gin).

Menards is not my first choice for a bathroom makeover, but since I enjoy the hunt of finding deals/sales at some of the more unique and local shops I figure these prices aren't too far off. It doesn't help anything, but my initial reaction is to smack my head against the wall because none of this would have been so terrible if I been working and could afford to make the extra changes, but right now that is not an option.

I don't want to fix things now and then pay to tear it all apart again in a year. More importantly, I have been working like crazy to clean and organize the household and now significant portions of our household are going to be torn apart. I have no idea how I'm going to keep the kids out away from these messes, but we'll figure that out later. On a more selfish note, I do not want to loose my happy place right now.

My potential hysterectomy is only 3 weeks from today. I get tired of all the uncertainty and radical acceptance that my current health situation imposes. Now I don't even know if I'll get to soak in my  bath before then (and if I do have to have surgery it will be awhile before I get to soak again).

I'm sure I'm overreacting and I know I sound ridiculous, but this was another one of those things that I just never expected. I will get over it. I'm sick of my bad luck and right now I don't feel like being a good sport.

On the upside of it all...we gave the kids baths tonight and after Ella's bath she toddled over to E's potty chair and very intentionally peed (this is not the first time she has done this). E was very annoyed when we made it into a big deal and gave her a prize from the treasure box. It took him all of 10 seconds to use the potty once she vacated it-he needed to ensure she didn't get all the good prizes. They obviously inherited their ridiculousness from Geoff :)

Cancer chain quote of the day:

But sometimes it is necessary to do that which is too much. -Pope John Paul II

Waiting game

So I had my big appointments today.

As usual I was running later than I would have liked, but I still had time to have my labs drawn before my appointment as scheduled. Unfortunately the valet parking line was ridiculous (I let Geoff deal with the car and we met up in the cancer center/lab waiting room) and the wait for the cancer center lab was even worse. By the time I finally got in to have my labs drawn I was almost a half hour late for my appointment. This led to someone hunting me down while I was having my port accessed so they could figure out how to handle my appointments.

In the end it was decided that both of my appointments would be combined in the gyn oncology department. This meant we only had to go to one place and more importantly I only had to have one pelvic exam (still one too many).

As usual, lab had difficulty with my port. I'm not sure that it was actually the port this time or if it was the phlebotomist I had. She is super sweet, but definitely not as comfortable with ports, or my port, or maybe it's me. Whatever. In the end, I still had to have another person come and take a look at my port and then all was ok. It drew back (aka they were able to get blood samples via the port) and then it flushed and then I was done with it for now.

Once I was done with lab Geoff and I hurried downstairs. We arrived just before 11:30, the originally scheduled time of my second appointment. We were taken back to a room right away. Once my vitals were taken and I answered the usual million questions we were on our own for about 15-20 minutes. First to arrive to our party was my radiation oncologist and her resident (he has been with her through all of my internal radiation treatments and Geoff and I like him).

We spent a few minutes talking about the fact that I am having some issues with numbness and tingling in my extremities, mostly my hands. It is driving me nuts and waking me up at night. I know it is a potential side effect of my chemo, but I wasn't expecting that it would happen this late. Apparently this is completely typical and hopefully it will go away but it might go away as quick as it appeared or it might take a few months (d8%mit!!!!). If it gets worse then I'm supposed to let them know. There are meds I can take, but even though it is driving me nuts right now I really don't want to at this time.

While I was going through a run-down of neuro checks with the resident the rest of my party arrived. So now it was Geoff and myself with my radiation oncologist, the resident, the gyn oncologist, and our super hero NP. It was decided that everything would get tabled temporarily so they could do the necessary exam and we could go from there. I was given a few minutes to change and then the whole party group came back.

So let me be clear...it was great that I only had to have one exam, BUT that one exam was with a whole party in the room. Everyone in the room has already seen all there was to see, but it still didn't make me at all happy. I tried to have a good attitude about it and I thought about an episode of one of E's favorite shows...instead of party in my tummy, I giggled that there was a party in my pants...

http://www.youtube.com/watch?v=6Os-CACRwM8

Really it wasn't funny though.

I did what I usually do during these exams and tried to ignore the exam part by playing on my iPad and halfheartedly listening to the words that are being said. In the end both oncologists did their own exams and everyone else but Geoff had a peak. My radiation oncologist decided the spot in question has shrunk again, but it still isn't gone. She asked my gyn oncologist what he thought about more chemo and he immediately responded with something along the lines of I think it would be a good idea. Then the tears started to well up in my eyes and the NP shooed all the doctors out of the room for me to get dressed.

While I got dressed and regained some composure they pow-wowed in the hall. Meanwhile I freaked out. The next round of chemo is another set of 6 doses, but this time they would be 3 weeks apart. In other words it would be 18 weeks of chemo. I would lose my hair. It is another platinum-based chemo so it is very likely I would continue to have similar adverse reactions.

I have no idea how I would go back to work since I technically don't have a position anymore. How can I apply or take a job and say well, I will be happy to work, but every 3 weeks I'm going to need some time off for my sick days. At the same time, it would difficult for us to financially handle another 18 weeks+ of me not working.

I didn't mention it yesterday because I didn't realize it at the time, but one of our bathrooms flooded into our living room while we were gone for the weekend. The ceiling in the area is damaged, the carpet is soaked, and beyond that we don't know if there is more damage. No matter what, it's frustrating. We have called our home owner's insurance and initiated a claim, but unfortunately it seems things like this never stop...A few weeks ago it was our bed. Now we are sleeping like college kids with our mattress on the floor. Not the end of the world. Actually it works better with Ella, but at the same time it looks pretty ghetto. Oh well, it's only temporary.

After I was dressed, my radiation oncologist and the resident came back in to talk with us. She explained that everyone came to a consensus. The plan is that I will come back in two weeks from tomorrow, Nov. 6th. I will have another MRI and another physical exam/pelvic exam with my radiation oncologist. Then the results from the 6th will be discussed on the 8th at another Tumor Board Review which is when a final decision about the plan will be made.

Although the spot on my cervix has shrunk considerably it is still there, and if there continues to be there or there is any other residual effect I will have a completion hysterectomy on Nov. 13th (3 weeks from tomorrow). It is already scheduled. Actually it was scheduled a few weeks ago.

This was what I was anticipating hearing today. I'm actually surprised that they are giving me a few more weeks. Geoff and I figured I would no longer have a uterus by Thanksgiving and we are still guessing that will be the case. I promise I'm staying positive, but this is my reality.

Tumor board review will be the deciding factor for everything. I don't want the surgery and I really don't want the chemo, but once again I'll do what I have to do. Fortunately at this time they have decided to lean towards just the surgery, but we will play the waiting game and see how things go in a few weeks.

After we were done with all these discussions our NP stayed with us for over an hour talking in more detail about sexuality. I love her, and what she needed to discuss with us is very important, but it is about as comfortable as having a two-on-one high school sex education class. I mean I'm married and in a monogamous relationship. I really never thought we would have to discuss anything related to our intimacy we didn't want to.

Much of this has been discussed extensively with us at this point. I've toyed with whether I wanted to put any of this on the blog before, and today I decided I would. (note: this isn't details about us...this is related to cervical cancer and sexuality). Unfortunately pelvic radiation can cause the vagina to shrink. Throughout treatment the importance of using a vaginal dilator/vibrator is discussed. At the end of therapy I was given a vaginal dilator. Vibrators actually are better for reducing vaginal shrinkage and encourage increased blood flow (I'm sure you really wanted to know this), but the practitioners are not allowed to bill for the vibrators so they sell them in the UW pharmacy and/or UW works collaboratively with a local store.

http://www.thedailypage.com/isthmus/article.php?article=37561

My NP decided that we should see the selection of vibrators and talk about them. She also brought samples of lubricants and basically kept talking until we reluctantly participated in the conversation. She is awesome, but it was so uncomfortable. At the same time, it was invaluable. She was very helpful as was the information she gave us.

The reason I finally caved and put the info about the sexuality discussion on the blog is two-fold. Number one, there are an amazing amount of nurses/doctors and other healthcare professionals that read this blog. It is important for everyone to know that no matter how painful those discussion are and how unresponsive the patient(s) may seem, what you are doing is important and most likely, appreciated. Reason number two is possibly the most important. When I started this blog I wanted to share what this experience is like. There is no way I can give a full perspective of this experience, but there are things I can share. All of it is hard. There is a lot on our minds.

These are the things I think about. I was originally the one that wanted three kids. I talked Geoff into three kids and now I can't have three. I'm only 35 and I'm going through menopause. None of our friends that are our age have any idea what this is like. Then we have doctor appointments where we have to discuss sexuality and vibrators and lubricants and all sorts of stuff that we shouldn't have to worry about at this age unless we want to "spice things up." Geoff is awesome as always, but I feel broken. I can't help but worry that this isn't what Geoff signed up for or that I'm going to be a let down. Eventually all this will settle down and we will be able to adjust to whatever our "new normal" will be in relation to all this too.

Cancer chain quote of the day:

"Courage is fear that has said its prayers." -Dorothy Bernard

Big day or not...

Ella raided her uncle's "party beads."

There was no post last night because we were at Geoff's parent's house in Iowa. Since they don't really live in the US they have don't have wifi. Geoff's cell phone can be used as a mobile hotspot which was our intention, but we didn't set it up. In the end it all worked out alright because our kids were not cooperative about going to bed. Neither one has ever spend the night at Geoff's parent's house and I'm not even sure if either of them even remembers ever being there before (they have been there once before for a day trip...E maybe twice if you count stopping for a bathroom break).

Geoff's dad marking E on the height chart (E measures about a half inch taller than his uncle at a similar age).

Anyway, tomorrow is the next big day in our saga. I have labs first and then I will meet with my radiation oncologist. An hour later I have an appointment with my gyn oncologist and my favorite NP (something to look forward to). I have ideas about what the next step is going to be, but we will wait and see what they actually say.

I can't say I am actually looking forward to tomorrow, but as usual I am still looking forward to finding out what they have to say. The other highlight of tomorrow is that assuming I can bank enough milk tonight I will submit a milk sample to have it checked for it's platinum content (the chemotherapy I had was a platinum based chemo). In other words, after this sample is tested I will know if it is safe to attempt to nurse Ella again.

Either way I'm not sure it will happen. I'm not sure she is going to be interested, but I've come this far so I'm going to see it through.

Not a great photo but this is the last time I nursed Ella...right before we dropped her off at daycare so I could go to my first chemo treatment...There are not words to describe how painful this was for me (and my pain was nothing compared to Ella's)

 

Cancer chain quote of the day for yesterday:

"I don't think of all the misery but of the beauty that still remains." -Anne Frank

Cancer chain quote of the day for today:

"Do not be afraid of tomorrow; for God is already there."  (Couldn't have said it better myself).

Peaked

After careful consideration I have decided to not get into the Lance Armstrong discussion at this time. Geoff and I are still passionate bikers at heart and the discussion is too deep and intense for me to convey in a few sentences. In order to for me to discuss Lance, there needs to be discussions about other the players and the sport of cycling in general. Not really something I want to use my precious blog time for at this time...The one thing I have to say is that despite anything else that may have or may have not happened, what Lance has done for cancer patients with his "Livestrong" Foundation will always make him a hero.

Moving on...

There was a day this week that I felt almost normal. This one day convinced me that I was doing much better and that I could resume normal activities. It was the next day that I made 10 dozen cupcakes (some were mixes and some were made from scratch) including 2 double batches of homemade fudge frosting.

I have also laundered just about everything I could find this week. All our clothes, sheets, pet beds/blankets, rugs, throw pillows, some bed pillows, and I don't know what else. I have been on a mission. I know what I haven't been able to do these past months and I'm afraid there is more coming. I had no chance to be prepared before, but this time I have convinced myself there are things I can do.

Our kitchen island is always cluttered. It drives me nuts, but I still put things there just like everyone else. This week I have attacked the clutter and removed more than half of it. I set a goal of by next week making 90% of it disappear.

I have set goals like this for just about every room of the house and just about every aspect of my life. I had every intention of cleaning everything, catching up on all my schoolwork while being super mom to the kids and the pets and superwife to Geoff. Yesterday all of this was starting to catch up on me, but I decided I could tough through this.

Then last night one of our dogs claimed my spot in the bed. She doesn't usually sleep with us, but she tore a toenail recently and she thinks she is dying so we have taken pity on her and let her snuggle with us. The problem is, Esther is about 90 lbs and spreads out to be at least 200. Then Ella decided to sleep horizontally across the bed and Geoff spread out too. So much for having a king sized bed. They left me a horizontal space that was just wide enough to sneak inbetween Ella and Esther and only the upper 2/3 of my body fit on the bed. I convinced myself that I was too tired to care and that I didn't want to disturb anyone. It was really stupid of me. I didn't sleep. This morning when Geoff got up to go to work, I needed to get up to get E ready for preschool, but I snuck into his spot for a 15 minute catnap. It didn't really help.

I was exhausted and sore all day. I was crabby and easily frustrated, but I kept going. I told myself I would take it easy, but like an addict I kept going at the same pace I have set for myself all week. Ella and I got a bunch done around the house while E was at preschool, then we ran errands. We picked him up, and Ella was asleep by the time we got home. I made lunch for E and myself and I finally sat down to relax. Then it all caught up with me. I ended up sick in the bathroom. Not once or twice either...

I decided to lay down while Ella was sleeping and E was playing quietly in his room. As usual E was fine and would let me know if he needed anything. Ella on the other hand, woke up and crawled out of bed while I was sleeping and I didn't even know. Thankfully E woke me up to let me know.

I got back up. I took meds and got E down for a nap. Ella was being great, but I realized that despite everything I couldn't do it. I couldn't stay warm. I couldn't get comfortable. I couldn't take care of myself, much less Ella, so I called Geoff. He left work a few hours early and came home to rescue me/us.

He picked up the pace and took over where I left off. He helped me to get comfortable and rest. E had a fall family fun night at preschool tonight that we have talked up/promised all week and Geoff vowed to take both kids by himself and go. I had planned to attend with them and then go up to Madison for a farewell dinner for a friend of mine that is moving back home (her husband finished his PhD). I messaged my friend that I wasn't going to be able to make it tonight and that I would find another time to see her before she leaves.

In the end I went to the family fun night. Preschool is only a few blocks from our house and there was no time obligation. E wanted me to go and doesn't understand or deserve me not going because I don't feel well. Both kids had a blast and I was able to park myself in a chair or stand next to the bouncy house and take pics and talk to another mom/friend. Other than that I have stayed up with the kids, taken a bath and made sure that Esther has the most comfortable bed in the house tonight. Seriously.

Cancer chain quote of the day:

"I will bless the Lord who guides me; even at night my heart instructs me. I know the Lord is always with me. I will not be shaken, for He is right beside me." -King David

Blessings

Something I have learned through all of this is that each day really is a blessing. Of course there are times I loose sight of this or need gentle redirection. Fortunately for me gentle redirection frequently comes in the forms of phone calls, mail, and visits.

I have always liked getting mail. Don't we all? Christmas cards have always been a favorite for me. This is ironic because I am notoriously terrible at getting ours sent out (that being said I am great at getting them done...I have the cards that I meant to send from the last couple years still here...thinking I might send them with this years). Cancer sucks, but one of the perks of all this is that I have an amazing network of family and friends who support me with mail of all kinds.

I check the mail each day with great enthusiasm. Today there were two cards. One was from one of my greatest all-time friends and one was from one of my former co-workers at UW. Both cards gave me such happiness. Yesterday another friend of mine sent a package filled with candy (in case I needed something to stimulate my appetite or if Geoff needed a pick-me-up) and a Halloween book for the kids and a non-school, fiction, fun-to-read book for me. One of my classmates has been sending cards to Geoff and I through this whole process. Enough that I have actually lost track of how many cards she has sent overall.

I think back to all the money people wasted on cards when I was kid. All the birthday cards that I only looked at because my parents made me look at the cards before I opened the presents. Now as an adult, I treasure each and everyone of the cards. My cancer cards are one of my most cherished possessions. I have sat with Geoff and my mom and a few other people who are able to appreciate the thoughtfulness and shown them each of my cards.

These cards currently reside in a decorated mailer envelope next to my bed. I think I'm going to have to upgrade to a memory box. I feel a like a hoarder for keeping all of them, but I can't help it. They are wonderful. There is so much love and support in each and every card. The words that people have written give me strength to keep going and to know that eventually life will have a new normal. These little pieces of paper remind me that I'm not alone in all of this. I never have been.

This week has been both easy and hard if that is possible. It has been easy in that I haven't had to go to the hospital. I haven't had to juggle appointments and kids. I haven't had to deal with port issues or get tattoos I never wanted. The hard part is that I'm not actively doing anything to kill cancer anymore. I'm waiting. I have never been a patient person or a good patient, and now I have to be a patient patient. Even though there is a part of me that wants to know what is going to happen on Monday morning, there is more of me that thinks no, thank you, I have enjoyed this week.

Initially I started this week sick from residual effects of treatment. I am run down and tired, but the freedom from treatments really brought my spirits up. The last few days my energy levels have been up too. Yesterday was Geoff's birthday and inbetween trying to do a million loads of laundry, catch up on school work, make birthday cards with the kids and everything else, I baked about 10 dozen cupcakes. Some for Geoff's work. Some for preschool and daycare. Some for our housekeepers that came today and our vet who was kind enough to make a house-call. Today I had a similar personal schedule and I am officially exhausted and I hurt.

Tomorrow Ella is home all day with me and E is home after am preschool. I am looking forward to sitting and playing with my kids. I am going to take it easy and enjoy each blessing of the day. Hopefully we'll have time to send mail to some people to brighten their days. I definitely planning to take a nap if at all possible too...a blessing that I frequently forget to take advantage of.

Cancer chain quote of the day from yesterday (I fell asleep before writing my blog post) and today:

"We have two options, medically and emotionally: give up, or Fight like Hell."  -Lance Armstrong (ironic that this is the one that came up for yesterday...might have to have more words about this tomorrow)

"Be nice to to people, you never know what they may be going through. Be kinder than necessary, for everyone you meet is fighting some kind of battle."

I can't help but include a few pictures of blessings from this week...

Riding in a firetruck last weekend.

Firefighter Ella.

One of the cute little things our housekeepers do to make the kids giggle.

Geoff with Lucky the pony...Isn't he adorable?

 

 

 

 

 

Tractors

Day one of cancer denial went well. E has been feeling a bit off the last few days so instead of having a day completely to myself I decided to have a mommy and E day. Tuesdays were my chemo days and then they were internal radiation days. Today was my first Tuesday in months that I didn't spend the better part of the day at the hospital.

Since I originally planned a day of sleeping in, lounging, doing some homework and general laziness, I opted to still send Ella to daycare for the day. I felt pretty crummy about it, but at the same time I knew I wasn't up for being a mom of two today.

I was up most of the night last night. Geoff fell asleep and I just couldn't, so I read for awhile. Then I tried to go to sleep, but I didn't feel like sleeping so I read some more. At 3 am I decided it was time to just go to sleep, but I still couldn't sleep. Then I finally went to sleep at around 4:30 or 5 and an hour later Geoff's alarm went off and I was wide awake again. This isn't normal for me, but oh well it happens.

Geoff and I talked about the whole E staying home thing and decided if E wasn't awake on his own before Geoff left, then E would stay home. I knew Geoff would tell me to send Ella but I debated keeping her home too until she woke up, looked at me and started giggling. Geoff was in the shower so I had some quality Ella snuggling time, but then she was off and running. Ella doesn't do low key days well (yet), but E does so it all works.

E woke up a little after Geoff left and he wanted to snuggle so he came in our room and watched tv for a bit. Then we had breakfast and stayed in our pjs for an extended morning. We watched some more tv, read books, played toys and had a great time. Then we decided that it was time for an adventure so we headed to the toy store. I had a coupon for a specific brand of toys I wanted to use and I never take E to the toy store with me.

E picked out a tractor he really wanted and I told him that we would use it for a big prize in his potty treasure box. He hasn't been wanting to go potty again, but that tractor changed everything. He woke up from his nap and the first thing he wanted to do was go potty and it's been pretty consistent the rest of the night. I'm afraid we are going to have to keep bribing him for the rest of his life...at the same, it's fun. I loved going with him to pick out a toy at the toy store and watching him as he calculates how many times he is really going to have to go potty before he gets the "big prize."

I asked Geoff if he would mind making a run to Farm & Fleet with me for bird seed when he came home. I have um, sort of adopted a raccoon at my bird feeder. I haven't been keeping bird seed stocked, but when I did it was a gourmet blend and I decided that I should maybe cheapen it up a little. Ok, ok...it's actually a couple of raccoons and a possum but don't tell my neighbors ok? (sorry guys if you are reading this)

On the way to the store we stopped at the barn to check in on Aggie. She had just come in for the day and was eating her dinner. I of course, added a few treats so she would feel special, especially because we ended up fawning over the new pony, Lucky. I'm kicking myself for not taking pics, but he is adorable and really gentle. E and Ella were both excited to pet him and see him and E has continued to talk about him tonight. At the same time E was a little distracted at the barn because he got a present...his first pair of barn boots.

At first he seemed really excited and he let us get them on his feet to see if they fit, but just as we got them on his feet he declared they needed to be off. He was being 3. The funny part is that at home he wore them right up until he went to bed and then they had to spend the night next to his bed. (and according to Geoff part of the reason E wouldn't go to sleep for us tonight is that they made their way back into his bed...)

After the boots, E went outside with pretty much everyone else to go drive the tractor. He was pretty excited and giggling, but he didn't make it very long before he started crying and asking for Geoff. This is exactly the kind of behavior that led to him staying home with me for the day in the first place. It was odd, but oh well.

The funny part about today is that there was never any sort of planned theme to the day. I had randomly dressed him in his overalls this morning and he grabbed a brown tractor hoodie to wear as a jacket when we went out. Then we bought the toy tractor. Later we went to the barn and he got barn boots and drove the tractor. It seemed only fitting that when it came to pj time that he would wear his one pair of john deere tractor pjs. As I took the picture I self-consciously became aware of the farm rug in his room.

I'll admit I eventually would like a hobby farm and technically, I do have an agriculture degree, but I think tomorrow we might pick a different theme for the day. I'm not sure I'm ready to sign my kid over to the FFA (future farmer's of america) or to peg him as a dreaded "country kid."

Maybe tomorrow we will have a woodland theme day or in honor of Geoff's birthday we'll think of something more festive...We'll see. All I care was that today's theme wasn't cancer. And you know what? I felt better than have in months!

Today's cancer chain quote of the day:
"There is much in the world to make us afraid. There is much more in our faith to make us unafraid." -Frederick W. Cropp

+50 years

Sometimes it seems like people think cancer treatments are like a round of antibiotics. You have the treatments and voila! you are better. It doesn't really work that way.

The reason the first follow up appointment is usually in 4 weeks is because the radiation is still working it's magic even after you are done. It is also because that is about the amount of time that they say your body needs for some of the inflammation and side effects to dissipate.

I asked last week about chemo and when I should expect to hit bottom from the after-effects. I was told there really is no great answer, but hopefully I hit bottom last week since a couple of my lab levels went up slightly from Tuesday to Friday.

Overall it really doesn't matter that people don't know these things. I know I didn't have any idea. The problem is that on a selfish note it is hard for me. Everyone thinks "yay! your done!" and while I'm thinking and saying the same thing, I'm also thinking "*groan* I feel like crap...worse than I ever have before."

I'm still constantly sick to my stomach and nothing really sounds good. If it does, I regret it shortly after. I hurt everywhere. I've resorted to sleeping with a heating pad. I live for my next dose of Tylenol. There is so much more...Essentially I have aged 50 years in the course of a couple months.

Over the next few weeks I am hoping to heal and get those 50 years back off. My next appointment is next Monday so for this week I am planning on taking it as easy as I can. I plan to lay low and heal. More importantly I'm planning on living in denial this week. I have no medical appointments before next Monday. I don't have to be at the hospital AT ALL for the first time since July or August.

I don't think I'll be able to forget completely or live like I did before cancer, but I want to treat the week like it is more of a stay-cation. The hardest part of all this is deciding what it is I expect from others. Do I want them to talk about it? Do I want them to know that I feel miserable? Do I want them to know that I can't sleep at night because I'm up sick for a good portion of it? and even if they know these things, what do I expect of them? How do I want them to react to me?

I really have no idea. I don't know how my cancer makes everyone else feel. I'm pretty open about it and I'm not sure if that makes others uncomfortable. I almost laugh at myself sometimes because I think I do the midwest nice thing...I put a smile on my face and tell everyone "I'm fine" even though all I really want is a nap with my heating pad and a nice dose of Tylenol and Zofran (anti-nausea med).

So for this week I'll continue to post my thoughts about cancer, but the rest of my days I'm mostly going to lay low and recoup. I plan on visiting my horse and running a few errands, but mostly I'm going to sleep, do homework, play with my kids and sleep. Hopefully by next week when I have to deal with doctor appointments and lab draws again I will feel less like I'm 85.

Cancer chain quote of the day:

"If it weren't for cancer, I'd say I have the perfect life. If it weren't for cancer, would I even realize this?"

***I don't read these quotes before I type them into this blog, but some days it really seems like the quotes are able to sum up what I'm thinking better than I can.

Quotes

Yesterday I forgot to include the cancer chain quote of the day so here it is:

"What lies behind us and what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson

Today the quote is:

"Some days there won't be a song in your heart. Sing anyway." -Emory Austin

That's all I have for today.

The rest of the story

Yesterday was a really long day.

I was at the hospital at 9:30. I headed straight to radiology and figured I would have the usual 15 minute or so wait. I didn't. I was taken back almost immediately, but I was excited to find that my nurse was the same nurse I had when I had my port placed. She also has called me another time to do a pre-screening checklist for one of my MRI's. She is one of my favorite nurses and she saw I was on the schedule and traded the patient she had or was supposed to have, so she could have me.

Unfortunately I only had her before my procedure, but still it was a definite bright spot to my day. After she got me ready, I was taken back to the interventional radiology room that I was going to have my port procedure in. It may have been the same room I originally had my port placed in, but I'm not sure.

The nurse practioner accessed my port and then attempted to flush the port as I took deep breaths. There is a 60" (or close to) tv screen/monitor in the room and a giant "xray" machine that moves to be over the patient (me). With this machine we were all able to see everything the NP did in real time and whether it made any difference on my port. It didn't. She tried multiple times, but in the end it was decided that in order to fix my port I was going to need to have a catheter inserted in my femoral vein in my groin.

I was not excited about the whole having a cath procedure done. I had already met the fellow that would do my cath "in case I needed it." He came back into the room and did an ultrasound to find my femoral vein. This was the part where I almost cried. Of course it wasn't externally painful, but emotionally, it was extremely painful. Before my procedure I was required to give a urine sample for a pregnancy test. I wasn't sure if I thought it was funny or if I was bitter. Probably both. I really just wanted to say "are you kidding me? you guys have already killed everything! how could I possibly be pregnant?" but then to have an ultrasound it really brought it all home.

I've said it before and I'll say it again. We had planned to have 3 children. We knew that was what we wanted. We had everything planned. We know life doesn't always work out the way you plan, REALLY we know...but this is one of those things that we never thought would affect us. We love and cherish our 2 children with all our hearts, but that doesn't mean that it doesn't hurt that we can't have the third one. It is something that we think about everyday. We talk about it to some degree nearly daily, but having the ultrasound was something I had to take on by myself. I knew that if Geoff was with me all I would have had to do was look at him and he would have known. He would have hugged me or given my hand a squeeze or even just given me a look back, but he wasn't there. It didn't matter to me that they were using the ultrasound to decide where to slice into my femoral vein or that they gave me a couple injections of lidocaine (which stings). All I could think about was that stupid ultrasound.

Then they put the ultrasound away. I watched the radiologist thread the sheath (a hollow plastic tube that they put in to my vessel to help thread the catheter) up my femoral vein through my heart to my port. It was interesting the first time he did it. It was less interesting the 6th or 7th time. Unfortunately each of the tools that he inserted with the hopes of "grabbing" the internal part of my port did not work. My port would not budge.

I went to the bathroom before the procedure (remember I had to do that pregnancy test), but with IV fluids going I had to go again about 30 minutes into the procedure. This means I had to go before they ever started the cath. I laid there quietly fantasizing about how badly I needed to use the bathroom and praying it would all be done soon. I also convinced myself that despite my nursing knowledge and background that somehow I wouldn't be put on bedrest precautions after my cath so it wouldn't matter and I would be able to actually use a bathroom.

Eventually the fellow asked the attending to come in and assist. They worked together for awhile, then they had a little pow-wow off in the corner, then came back and worked together for awhile again, and then decided that best answer was to remove everything including the sheath and insert a larger one. By using a larger sheath they could insert two catheters and they could work together to see if they could reposition my port. By this point I was pretty much done. I no  longer saw the value of keeping my port. I had to go to the bathroom REALLY bad and I had less than a half hour before I was supposed to be at internal radiation. It didn't help to watch the look on one of their faces as I could feel a hot sticky liquid (blood) drip down my leg and the other quickly attempted to stop the bleeding (and this was while the sheath was still in). All I could think was "crap. I was already anemic going into this."

Finally I admitted to my nurse I really needed to go to the bathroom. Other than the initial lidocaine injections I had no pain medications and she kept checking to see if I wanted something. Keep in mind though that my options were limited since I was off to anesthesiology next. I didn't need something for the pain, I just needed to go to the bathroom. I didn't plan on her doing anything about it at that point, I just wanted her to know so when we were done she could have a plan.

She of course told the whole room and they offered to stop and let me use a bedpan. I declined. They promised they were almost done. I wasn't sure I believed them. Remember,  I was watching the whole procedure myself and I have enough knowledge to know that none of the catheters they had used up to this point had even budged my port. At the same time, once they were able to each have their own catheter and work together it really only took them about 10 minutes to fix everything.

Before they removed the sheath which requires them putting physical pressure on the groin site for 5-10 minutes they asked if I wanted to try the bedpan. By this point, I really did feel like I was going to explode so I reluctantly said "sure." So my nurse brought me a bedpan and positioned it under me and then walked away. The door to the room to the outer hall was closed, but inner door for staff and the blinds in the window were left open. People continued to walk in and out of the room and I could hear people saying "oh, she needs to use the bedpan." This coupled with having to lay flat to urinate did not work for me so I gave up and told them to just go ahead and remove the sheath.

Finally I was done and transported to my hospital room. I always get one of two rooms (they are right next to each other) and I usually have the same nurse, but unfortunately for me he was on vacation this past week. I met my new nurse of the day and told her my dilemma. I explained that as soon as I went to radiation they were going to put in a urinary catheter so if she just wanted to get it done that would be ok (this equals desperation for me). She suggested a bedpan. All I could think was "are you kidding me?...didn't I just tell you I tried that already?" Instead I said "sure I guess I can try again." She made some comment about leaving me alone and giving me complete privacy and having me call when I was done. That made the difference.

From the time my cath was done I had to lay flat for 4 hours and be on bedrest for 6 hours. I knew radiation would kill the 4 hours of flat time so I was relieved because I can't even sit still to let a manicure dry much less lay in bed for hours at a time. I was amazed that I was able to use the bedpan but it was only because I had to go so bad. Unfortunately for me, my nurse then spilled it on me. She also made some crack about how much better I'll be able to relate to my patients some day. I was NOT amused.

To make matters worse, my nurse became obsessed with the laying flat precautions and decided maybe it would be best to delay my radiation therapy until after 4:30 because of how I would have to positioned for treatment. She had a point, but I was seriously pissed at the idea of my day being extended by another 4 hours. Fortunately for me, the radiology MD's and my radiation MD talked and decided to go ahead with my treatment asap so next thing I knew anesthesia was there to wisk me away.

I had my final internal radiation treatment and I remember very little of it. I didn't wake up until I was in recovery and even that I remember very little. I was still pretty groggy when I got back to my room, but I was happy to be back with my phone and iPad. I texted Geoff and my parents to make sure everything was ok with the kids and everything was on track for picking me up. I tried to call Geoff too, but for the first hour every time I would pick up my phone someone would come in. My nurse, the nursing assistant, pharmacy and then my radiation oncologist.

My MD said the stubborn spot on my cervix has shrunk dramatically in the last two weeks. It was 1 cm x 2 cm and now it is "about the size of a pencil eraser" or about "0.8 cm." This was pretty exciting news. At the same time she told me that even though she usually doesn't have patients come back for 4 weeks, she wants to me come back in 2 weeks to see her and to see my other oncologist. All the appointments were already made and I am to stop and have labs drawn before my appointments. I have my suspicions where this is going, but I have decided to be excited that I am done for now.

I ordered some food while I waited for my bedrest precautions to be done. About a half hour before they expired I removed my catheter and Geoff showed up. We had everything timed perfectly so I could go home. Unfortunately, pharmacy never sent my nurse the heparin syringe she needed to deaccess my port so we waited and waited and waited. She did eventually get one, but I'm not sure if it was from pharmacy or from some other unit that keeps heparin syringes stocked that I may have called myself.

When I was finally discharged it was about 7:30 so I decided to take a victory lap up to see my old co-workers. We had Ella with us, but not E (he was with Geoff's mom) and it felt right to finish off my treatments with congrats from my favorite nurses at UW.

C is for Celebration Time!

I am DONE!!!

6 weeks of chemo-check. 30 external radiation treatments-check. 5 internal radiation treatments-check. 1 working port-check.

Today was a VERY long day and I'll save the details for tomorrow's post. Tonight I just want to celebrate.

Cancer chain quote of the day:

Don't let worrying about tomorrow rob you of today.   (fitting don't you think?)

Tough time

Some aspects of this whole process are easy to articulate and others seem too abstract and difficult. There are so many things that I can't say or don't say and others that I try to say, but I'm not sure if the words I chose really communicate my message.

Today is my last brachytherapy (internal radiation). I am dreading it as I have dreaded all internal radiation, yet at the same time I can't wait because it means I am done. Well, done for now anyway.

On Wednesday the nurse practitioner that is managing the issues with my port called. We talked and the current plan is that I will come into the hospital 3 hours early Friday so they can attempt to re-thread my port. I'm really not excited about any of this. I've contemplated skipping all of it and having them do nothing and then having my port removed. The only treatment I have left is today's and I could just have a normal IV placed instead.

The issue with this is that I still will have an MRI and PET scan in a few months. Depending on what these tests show I might need surgery or more chemo. Either way having a port makes additional treatment much easier. Assuming that the port actually works. It probably sounds ridiculous, but I am hesitant to have the port removed due to fear of what's to come. Somehow it seems that if I have the port removed I am banking on not needing one again in the future and that seems overly confident.

Another issue with having my port removed is how I am doing right now. I feel like crap. I can tell I'm pale and puffy, but I doubt anyone else would look at me and know immediately that I am anemic and miserable. We were told at the beginning of all of this that it's at the end that everything hits you and you feel the crummiest. I was initially worried, but then I kind of forgot.

I wouldn't say I breezed through chemo. I still get sick to my stomach (literally) if I think of the word "cisplatin." External radiation had it's side effects, but it wasn't too terrible. I think all of this made me overly confident. I really thought I was going to make it through all this never feeling horrid for an extended period of time. One of my secret goals was to make it through all my treatment without ever being hospitalized. I revealed this goal to someone earlier in the week and then the next day everything hit me. Now I'm hoping that it was just a little reality check. I really want to scrape by and start my get well upswing.

Thursdays Ella goes to daycare for the day and E has preschool in the morning. I pick E up and we have lunch together and then nap in the afternoon. The housekeepers that my aunts have treated us to usually come while E is in preschool or during our lunch, so it is bit of a magical day because our house is transformed from very lived in to clean and tidy. This week they decided to come while E was in preschool so we could have a clean, quiet house for napping when he got home (though they were really sad when they realized they weren't going to see him at all this week).

I picked E up from preschool and brought him home for lunch and soon realized that I didn't have the energy to do the most basic tasks. I was having trouble even getting up and down the stairs. I called Geoff and we decided that it would be best if he came home to help for the afternoon. By the time he took care of a few things and picked Ella up, it was a couple hours later and E and were asleep. A nap helped, but I really don't have words to describe how I feel right now. We decided it would be best to have a carnivorous dinner and I think that helped perk me up for a bit too. Right now though I'm dreading getting up in the morning and juggling getting  E to preschool, making sure Ella and my parents are situated, and getting to the hospital on time.

I'm having a hard time with staying positive. I have to keep reminding myself that it will all be ok and that I'm almost done. It's hard not to waffle about the "what ifs" and the things I can't control, especially when I can't think as coherently as usual. I know it will all be ok, but I've spent extra time on Pinterest the last few days daydreaming about backyard renovations for next year as something to give myself inspiration and hope. I had my parents help me rearrange furniture yesterday and we put out some fall decorations so the house is more fun and festive.

Ella asleep on my lap tonight.

It's all baby steps right now. That's all I can handle, but soon enough I know this will all be behind us. Not that it will ever really go away for me, but I am excited for a time when this isn't my complete focus. I keep wondering if today is going to be the end of my treatment days and the beginning of my post treatment days. I guess only time will tell, but I can (and will) hope...

Cancer chain quote of the day:

He who fears something gives it power over him. -Moorish Proverb

C is for cranky

When I am tired or sick, I get cranky. When I'm both tired and sick, it is best to just steer clear of me. I have enough self-awareness to know when I need a little self-inflicted time-out. Right now is one of those times.

I have a lot to say, but instead of writing a full post tonight I think I'm just going to include the quote of the day and head to bed. I am hurting and I am exhausted and it's time for my time-out.

Cancer Chain Quote of the day:

Movies are fun, but they're not a cure for cancer. -Warren Beatty

P.S.

I just have to say that I have decided against the anti fresh fruit and veggies campaign. I know the risks but I think I'll wither up and die (not to be dramatic or anything). Besides the salad I had with my dinner was good for my iron levels (aka anemia) and I really can't live without fruit. Now that I've cleared that up...

Cancer chain quote of the day:

"Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean." -Maya Angelou

Downhill

I think everything went well today, but I don't really know right now.

I was supposed to be to the hospital early so they could do a H&P, but it was decided (later yesterday...no I was not called again) that my weekly visits with my radiation oncologist count for a H&P in the past 30 days. Unfortunately this meant I still arrived early which was shift change for the nurses. Partly because of shift change and partly because of all the last minute changes, no one knew what was happening. They paged the PA (physician assistant) and she told them to send me down to the dungeon right away. This was a over an hour early so the nurses weren't ready to pass me off that quick.

Before any of this was communicated to me I asked the nursing assistant to check into ordering a needle to access my port. The HUC (health unit coordinator) came into my room to tell me that last week she ordered a couple port kits specifically for me so they could make sure it was done before I went down. She then passed off one of these kits to my nurse.

My nurse decided to access my port asap. She did a good job, but for some reason it hurt like hell. Then she tried to flush it and I curled my toes and squeezed the blankets on the bed. I let her know it hurt and she did it again. Then she took some time to physically push on my port site A LOT. Hey, nurse friends I am going to give you a tip...If someone tells you it hurts like hell stop flushing!!! and sure as hell don't push on it like crazy!!! Since it is a port and I am able to tell her that it has been really positional (makes sense why later...ooooh foreshadowing) it would have been nice if she would have given me a chance to reposition.

Fortunately, I was saved from further torture by transport.

Once I got down to the dungeon I had a quick chat with my resident and then my anesthesiologist. It was a different anesthesiologist again, but she had already to talked to the others and knew all the drama about my port and that I am fairly specific with my requests. Honestly, she probably heard that I am a high maintenance pain in the ass, but she was awesome and possibly my favorite yet.

I told her about the pain with my port and that despite what she may have previously heard that I definitely want a peripheral (an iv) if it continues to hurt. When we got back into our procedure room and she tried it, and surprise! it hurt! Then she gave me meds and it continued to hurt. Possibly more important, I wasn't sleepy. I am typically a light weight and as she put it she gave me enough Midaz (versed) "to knock out a horse." She was surprised because she had also heard (and probably seen in my chart) that I am a lightweight.

Then she tried to give me propofol (another med used to help me sleep which can cause a burning sensation as it is administered through an iv) and I was started begging for an iv. At this point they were also using gas and I took the gas mask off my face to make sure they knew I meant it. If I had to rate my pain I would say it was a 9 out of 10 and I never rate pain above a 7 (with the exception of the whole retained placenta thing from Ella's birth, but we aren't going to talk about that...the birth itself though...a 7, maaaaybe an 8, and Ella was 12 lbs).

When I woke up my port was deaccessed, I had a lovely IV in my hand, and I was GROGGY! I don't remember anything about the ride to the recovery room today. I don't remember the equipment being switched over and I'm pretty sure I did not help with anything. I did remove my catheter as usual, but that was much later. I also had a chest xray in recovery room to see what the hell is going on with my port.

I was by all standards awake, but still secretively pretty groggy, by the time we got to my room. I convinced my nurse to take my iv out and then ordered food. About the same time I had a quick chat with my pa. According to her, the chewing gum spot on my cervix showed up on my MRI so it is probably scar tissue or tumor. I'll talk more with my radiation oncologist on Friday (she offered to page her but I didn't feel like dealing with it today-it won't change anything today). More significant to today, she told me she had talked with one of the NP's (nurse practitioner) from interventional radiology (the department that deals with my port) that I had talked with earlier while in recovery.

My chest xray showed that my port has "flipped" and it is no longer in my vena cava (a large vein from the heart that makes sure that the any medication injected into me is carried to the rest of my body quickly). This is NOT good, very not good. There was discussion about trying to manually flip it Friday, but we also discussed having the port taken out. We'll see. In addition, I was also told that my labs today weren't so great. I'm anemic enough that they debated giving me a blood transfusion (this may have still been being debated as I had my iv taken out thereby ended the discussion for today). Since I am below the cutoff for their department, I am sure this will be readdressed on Friday.

Also, my white blood cell count is 1. This is also not good and means I'm at high risk for infection. My neutrophils, a specific type of white blood cell, are also pretty low. This is also bad. Currently my neutrophils are above the cutoff for "neutropenic precautions," but any more dives and I'll officially have to wear a mask. My PA already told me that I should that I should start following the precautions so I guess no fresh fruit or veggies for me, no feta cheese, and strict hand-washing for all members of my household (that's going to go over well with the kids *eye roll*). My platelets were also really low, but right above the cutoff too.

I guess I know why I've been feeling so exhausted and crummy.

On the way home I decided to call my parents and see if they were available to help me with the kids tomorrow, in addition to their usually scheduled Friday. Then Geoff called his mom to see if she could stay through part of Monday to help too (she flew in yesterday from Abu Dhabi and was planning to come this weekend). This means all the days for the next week that I am usually a "stay-at-home" mom I have help. This takes an enormous weight off my shoulders because even though I may look "fine" or "good," I feel like crap! I don't want to miss out on the fun things with my kids, but I know I can't do it all right now. In addition my last didactic term (the next term starts clinicals...yay!) for school started yesterday and I keep seeing my classmates comment about our classes on Facebook, but I haven't even read the syllabuses (or is it syllabi?) yet. I guess I'll get some sleep and then see if I can get that much done tonight.

Flexibility

Tomorrow I have internal radiation treatment #4 (out of 5). According to our original plans I was supposed to be done tomorrow (I would have had an additional treatment last Friday instead of this Friday). We rescheduled because my radiation oncologist was out of town.

So tomorrow and Friday my treatments were both supposed to start at 12:30 which means I am supposed to be to the hospital by 11:15/11:30. We had everything arranged. I had a ride for tomorrow from a friend. The kids will be at daycare as usual and Geoff will spend the day at work. I should be done around 4ish and Geoff is usually done with work at 4:30. He was going to pick the kids up and then they would pick me up and we would all go home together.

This afternoon the physician assistant called because the anesthesiology department notified her that I did not have a H&P (history and physical) from the past 30 days. This is a requirement so she wanted me to come a half hour early. I told her no problem and then proceeded to contact my ride and make arrangements. As soon as I got this taken care of, I got another phone call asking me to reschedule everything for 7 am.

Ug. Of course I said sure. I'm not happy about it, but it isn't that big of a deal. On the bright side I don't have to sit around for a half day pining for food on an empty stomach (one of the cruel ironies of all of this...normally I'm nauseous and have no appetite, then when I can't eat, everything sounds great and I'm starving...THEN afterwards I'm nauseous again...and then the steroid injections kick in and then I'm starving again but only for very specific things...absolutely no control over any of this...double ug).

So tomorrow is another disgustingly early morning where all of us leave the house at 6:15 am. I'm really hoping that Friday doesn't change because I was pretty excited about not getting up before sunrise this week. I'm really not a morning person. Either way though, I'm almost done with everything for now and I can't wait to celebrate (hopefully my plans will coordinate with not being nauseous).

Cancer chain quote of the day:

Toughness is in the soul and spirit, not in muscles. -Alex Karras

Lazy Sunday

The plan for this weekend was to take it easy...well, and do a few things...

Yesterday was fun, but busy so we figured we would make some time for downtime today...So we got up to go to church, but due to unforeseen agenda changes on behalf of E and Ella we were late. We decided that instead of interrupting church we would spend time in the coffee clutch area. We thought we would be responsible and sit on one of the couches that are directly in front of the tv that the church service is televised on. It didn't matter, we couldn't hear a thing and again our children were determined that our attention should be elsewhere. We weren't too fussed.

Then it was time for E to go to Sunday school (the reason we went to church despite being late in the first place). E as always had a wonderful time. One of the girls that volunteers in the nursery hunted us down to get Ella, but Ella was extremely anti-nursery today so that was a bust. It didn't really matter though, because Geoff and I still played some trivial pursuit card game. We have never finished a game during Sunday School until today and the important part is that I won. (I'm not above gloating a little)

After church we decided that E really needed a haircut and it couldn't wait any longer. Usually E gets his hair cut by the same person we all go to, but there is always a wait to get in with her so we caved and took him to Cost Cutters. There was no wait. The girl that cut his hair did a good job, but she never talked to him or me and because he moved when she got the clippers out she decided to do the whole hair cut by hand. It took forever, but again she did a good job. I was antsy because apparently Cost Cutters has a breast cancer awareness campaign going on and everywhere I looked everything was pink and had anti-cancer slogans. You would think I would think I would think this was great and on some level I do...but really it just makes me incredibly uncomfortable. I feel like I have this dirty little secret and as previously mentioned in a different post I feel like breast cancer is the "cool cancer" and I just have cervical cancer which is very very uncool.

After the haircut we ran home for diaper changes and to make plans for food. I decided that I could not live without Chinese food. Seriously. I haven't had it in ages and wouldn't you know that the Chinese restaurant here in town that we liked has gone out of business and the other one was not open. The plan was to do some quick research to find a different one that worked with our plans for the rest of the day. While I was doing research Geoff was putting the dogs out and E decided to let Fern (our 2 year old Coonhound) out of the house. In all fairness to E, he really didn't mean to and he started apologizing immediately (it was really cute). As all this happened Geoff twisted his ankle which left me to chase down our extremely fit and fast pup.

I think it is important to note at this point that this is the second time in 24 hours that we had to chase down Fern (last night when Geoff was walking the dogs she got out of her harness) and the third time in 24 hours that one of our dogs had gotten out (Esther, the 3 year old Coonhound was let out of the house yesterday...also by Ephraim...also by accident...through a different door).

We are pretty neurotic about our pets getting out and our dogs never get out, so by this third time both of us were pretty frustrated and concerned. Esther was very easy for me to lure back in yesterday and even Fern was pretty easy last night. This afternoon though Fern was sure it was time to play. She was running laps around our neighbor's houses and of course running towards the busiest street in our neighborhood. Finally we were able to catch her, but there was no luring or tempting home today. We have since restocked our treat selection and initiated multiple backup plans to prevent this from becoming an everyday occurance.

After reassuring E that all was well we headed out to get our Chinese and begin the real errands of the day. We drove to Paoli to check out the new store "Cluck." It is a store dedicated to the urban chicken trend. It is the source of the new chicken coop at our stable and also a source of much interest to both Geoff and I. It was really fun for all of us. We learned a lot and the kids really enjoyed some 6 week old Lavender Bantam chicks. E also enjoyed checking out all the fun coops and putting himself inside them since apparently none of them are 3 year proof.

After Cluck we headed back to Oregon's second annual Alpaca festival. A cute little event that is put on by our favorite photographer and her favorite Alpaca farm. The kids enjoyed petting and feeding the Alpacas almost as much as we did and we have some cute photos that I'll have to post another day.

After the Alpacas we had just enough time to run home and change diapers and let out dogs (without help from kids). Then it was off to swimming lessons. After swimming lessons we ran to Target and then the stable for my Sunday evening ride. We didn't get home until after 8pm.

All in all, it was a fun day and a fun weekend, but there was really nothing relaxing about it. In retrospect we maybe should have tried to do less, but the kids had a great time and so did we. I didn't get all the things I wanted to get done finished and I certainly didn't get the rest I craved, but I'll stay in my pjs for the day tomorrow. I don't have to get up for radiation and I'm pretty excited about that.

In other news:

E told us at one point in the day that he has a friend named Dougy and "she" is a butterfly, which is a type of bug (in case you did not know)

Cancer chain quote of the day:

"Not everything that is faced can be changed, but nothing can be changed until it is faced." -James Baldwin

C is for Courage

Last night I told Geoff that I needed to lay down for a minute before we put the kids to bed and that was it. Geoff and the kids read stories in our room in an attempt to include me. I remember trying to participate, but I couldn't stay awake. I don't even know what books they read.

I woke up sometime in the middle of the night drenched. I'm pretty sure it was a hot flash which seems ridiculous because our house is freezing cold (we haven't turned on the heat yet). I woke up again to go to the bathroom at 5 am or so and I woke up for good at 7 am. I'm pretty disappointed with myself at this point. First I fall asleep before my kids are in bed on a Friday night and then I'm up at 7 am on a Saturday? Not cool.

Oh well. I got sleep and I'm still used to my radiation schedule and having to be to the hospital at 7 am each day. I am so glad I am done and I will get to go not seeing outside before 7 am! I ceremoniously picked the stickers off my butt last night and giggled at the temporary tattoos Geoff helped me put on my derriere Thursday morning as joke to the radiation oncology staff (they got a pretty good kick out of it and I got even more comments yesterday).

It was slightly bittersweet to say good-bye to these people who have played a daily role in my life through one of the most intimate and painful periods I hope to ever have to endure. At the same time, I know where they work and I still have to go to the radiation oncology department for other appointments so I can always say hi. The worst part of yesterday was as I left I saw a women get her bald toddler out of it's stroller and carry it to one of the treatment rooms. I couldn't help myself, I looked at Geoff and Ella and just started sobbing. It was completely gut-wrenching to me. No matter how many blog posts I write or how much I talk to any of you there is no words to articulate all that I have gone through on this journey. The idea that some little munchkin who can't understand everything that is going on has to go through all of this, breaks my heart. I would have cancer any day if it were a guarantee that my kids won't (of course we all know it doesn't work that way and worse yet, it probably means they are more likely to someday).

When Ella and I got home from my last radiation treatment (we had dropped Geoff back off at work and E had an extended preschool day yesterday) I was surprised by a few cards and packages. One of the packages was from my sister-in-law (and brother and family, but I know who it was "really" from). She made me a card:

The rest of the card said:

Courage to get through the pain.
Courage to get through the unknowns.
Courage to get through the loss of what could have been.
Courage to face each day with a smile.
Courage to accept support from friends, family, and even strangers.
Courage to realize you are not cancer.
And the courage to know you are someone who has cancer and you will not only survive but thrive.

The package also came with a gift (the angel)...

The card that came with the angel said "Courage: Bringing a triumphant spirit, inspiration and courage."

It was the perfect gift and it came on the perfect day.

(In case you can't read the cute little quote behind the angel which was also a day-brightening cancer gift it says: "Have only one rule: Be your wild, courageous, brilliant self every Single day. No matter what...May you never fail to express all of the wild and wondrous things you are.")

It seemed that my theme for yesterday was courage and pretty obvious at that point that this was to be my blog post for the day. As I write about this, I think to myself "ya, I've been pretty courageous. Not always by choice, but because there was no alternative and because I have to be for my kids and family." Courageous was never a word that I would have used to describe myself, but as I read the quote from the card I think I can really understand each of those lines. I've read the quote before, but now that I am done with chemo and radiation everything takes on a different meaning to me. This quote is no exception.

At the same time I think about the little munchkin I saw getting radiation yesterday. I don't remember if it was a boy or girl. I remember watching mom get him/her from the his/her stroller and leaving the stroller and sippy cup in the waiting room. I remember that the little sweetie was chemo bald and I think had a mask on and wasn't crying. That kid was courageous. Way more than courageous than me (but don't worry I still know I'm courageous).

So as you say prayers for me or my family, please throw in some for that little 2ish year old and family. Pray for him/her to keep having courage and to be strong. Pray for mom and dad and all the hell they are enduring right now because even though I've been through it, I can't imagine what they are dealing with. It just doesn't seem fair.

And now for the cancer chain quote of the day:

"Never, never, never give up." -Winston Churchill....Seems appropriate don't you think?