Walk in the Word

Before I found out that my cancer had spread to a lymph node, I was very adamant that I wasn't going to do chemo and certainly not radiation. I had a ton of fears and hearing that my treatment would last about six months was overwhelming! There is no way I would be at this point in treatment if not for those who have chosen to stand in the gap and pray for Mark and I. Early on in this journey, I was so angry that there were many days I was unable to pray and I knew that wasn't a good place to be. I still have days that I'm angry and mourning our losses, but I'm definitely not where I once was thanks to God and the many prayer warriors on my behalf. I am incredibly grateful for those that pray for us (especially those that don't know Mark or I) and a "thank you" doesn't seem to be enough. So, I would like to share a site I've followed for years that is filled with wonderful sermons by Dr. James MacDonald founder of "Walk in the Word." Many times throughout the years God placed specific sermons at the exact right time for me. It may not have been something I wanted to hear at that moment but it's what I needed to hear. Anyway, I figure that this is a good way to say thank you to all who walk this journey with us one way or another. I hope you are blessed just as much as I have been by his sermons. You can never get enough spiritual food!

Under the Listen tab, click on broadcast archives to select a variety of series to listen to.
http://www.oneplace.com/ministries/walk-in-the-word

Advocate for yourself

I finally did some research in regards to radiation, Dr P advised me not to do research awhile back as he knew it would drive me nuts to read about all the negatives out there. Something just didn't sit right with what my team was telling me about my radiation experience so far, and I am so glad I did my own research! From the American Cancer Society, I found that not only is nausea very common in regards to the region of radiation I am getting but they gave tips on how to reduce the nausea. They suggest you eat a good sized meal and hour before treatment so that your stomach isn't completely empty, I had not been doing this! I was trying to eat after each treatment which wasn't working as the nausea cycle had already been started. Yesterday I gave this a shot and figured if it didn't work, I would start taking zofran and it worked big time! I had no nausea and actually felt quite good after treatment, I have a little bit of heartburn but I can live with that. It seems that I'm starting to get control of the IBS as well, so life is much more comfortable. For now, I will continue with the treatment plan as is and pray that there won't be a need to stop. I talked with Dr Monroe hoping to establish a plan B should I need it and there doesn't seem to be a good alternative. While I could take a break from radiation and do chemo and then go back to radiation, I will lose the beneficial component to radiation once I return. He also believes the break wouldn't really help my bowels because once we started again, all the problems would return just as fast, if not faster. I was glad to hear him say that sometimes we simply have to listen to the patients body, and if that means stopping prematurely that's what you do. He was very relieved to hear I was doing better and so could continue treatment, and honestly that scared me a bit. I know my prognosis is not nearly as good without radiation, I'm going to do what I can to continue for as long as I can. The rest is up to God I suppose.

I am angry that my radiation team did not know that nausea was a normal response and therefore have tips on how to prevent it in the first place. They are supposed to be the experts in this field and we as patients should be able to trust what they are saying. I'm upset that I can't simply be a patient, I have to be my own nurse too! Just because I'm in the medical field does not mean I want to be my own physician and try to solve every problem I encounter. I have enough stress with the day-to-day stuff! Having them tell me my response was "atypical" or "impossible" created a lot of unnecessary fear for both Mark and I. Not to mention I was pretty close to quitting based on wrong or lack of information. I no longer trust my radiation team, I trust the physician but only he can be as good as his team. That's why it has always been so important to me to tell my patients honestly what to expect, and if I don't know the answer to something I admit that I don't know and then try to get the answer. I know I have one shot at gaining their trust and when it's gone, it's gone. It's unfortunate that I have the added stress with each radiation treatment of watching them like a hawk because I don't trust them. I hate to say it but honestly, each patient MUST be their own advocate. If something doesn't sit right with you, ask questions, search for answers, and continue until you are satisfied. Because the medical field is filled with fallible humans mistakes will be made, and I've made mistakes in my career too. Don't get me wrong, I still believe there are excellent physicians and nurses out there, and I appreciate them all the more now! Anyway, enough of my ranting on the recent disappointments. Deep breath, move forward!

I saw this cute hat--on the front it says, "I love the smell of chemo in the morning." On the back, "smells like remission."

Decision time!

I am REALLY struggling with radiation and have decided I can't continue treatment as is, something has to change! My radiation team has dismissed my side effects as some bug because apparently it is "impossible" to have side effects this early on and nausea shouldn't be one of the side effects. I WILL NOT be dismissed by another health care provider ever again! I know my body better than anyone else and I have so many red-flag-gut feelings on this one. Like I've said before I am not the typical patient and so I don't really care what the typical response is to radiation. I was fine before treatment and I'm not fine now! I am sick and tired of medical professionals not really listening. It always upset me when doctors did not listen to my patients concerns, it's even more upsetting when I'm that patient. I have definitely learned a valuable lesson as a patient and I will not be pushed around. We will be doing treatment on MY terms. I have to be comfortable with whatever decision is made because I'm the only one that will live with the consequences for the rest of my life. I talked with Dr P's office this morning who basically said that radiation issues are deferred to the radiation docs. I understand that because they are the experts but what do you do when they won't listen? So I called Dr Monroe's team to say I will not continue radiation treatment as is, we must modify my treatment. I have ALWAYS been bothered by the fact that we treat cancer patients with this one-size-fits-all type of treatment, yet patients are individuals. I'm not trying to be a difficult patient or immediately give up at the first sign of trouble. I simply want to find a way to go through radiation with the least amount of permanent damage and the side effects to be controllable. If they refuse to work with me on this, I will not continue radiation! Radiation causes so much damage, not to forget that it also causes cancer. It seems that I'm super sensitive to it and my biggest concern is what will happen down the road if I push through now? If I just had nausea I could deal with that, but I have IBS as an underlying problem and it is already causing huge upsets. Radiation is cumulative and so if I'm having big problems now, just imagine what kind of problems I will have by the 10th treatment when I'm "supposed" to have symptoms. At the rate I'm going I will lose a good amount of weight (that I don't have to lose) and become dehydrated with the possibility of electrolyte problems in the process. Being a part of the ICU team, we would ask ourselves at what cost to the patient do we forge forward with treatment? What quality of life will they have when it's all said and done? My ICU experience has greatly impacted the way I look at things and for me, there HAS to be a balance between quality of life and aggressive treatment.......or I won't do treatment. Don't keep me alive just so that I can battle the next problem that has been created, that is not the life I want. Mark and I have talked about this and we are not on the same page which is very difficult but understandable. I understand where he is coming from but I think our fears are different types of fears. I have given much thought to the idea of him being sick instead of me and what would I ask of him, what decisions would I want him to make etc. I think it's very difficult to be on either side of this, each decision you make is complex with it's own set of risk/benefit.
At this point, my hope is for some type of compromise--either a lighter dose of radiation for a longer period of time, or break up the radiation like two weeks of radiation, followed by a cycle of chemo, followed by more radiation. I don't know if this is possible or beneficial but I'm presenting my case to Dr Monroe either today or tomorrow. I will not do radiation on Tuesday without some type of modification to my treatment plan. If I've learned anything throughout this process it's that I WILL be heard and taken seriously!

Nausea

This is day 4 of radiation and if I'm nauseous in about 2hrs then I KNOW it's coming from radiation. I feel good except for the waves of nausea that come and go and so I just don't buy that this is a virus or bug. When it comes it's pretty bad, but then it goes away and I'm able to do whatever I feel like doing. I talked with my "team" again and while this wouldn't be the "normal" reaction to radiation it isn't unheard of, so I wouldn't be surprised if this is my reaction. There has been nothing normal about my whole cancer journey! I can't tell you how many times I've heard doctors say "this has never happened before." I've been told so many times that I'm an "interesting case" which is something you never want to hear as a patient. I've worked on several interesting cases as a nurse and they are exciting as they challenge everything you have learned or know, but I don't want to be on this end of it. I so hope to be nausea-free tonight!
I'm also finding that water tastes pretty much like it did the first few days after chemo which makes it hard to drink. Maybe because I have to drink about 20oz an hour before radiation I've come to associate water with treatment as water has been heavily pushed this entire time. I've heard that people no longer like certain foods once they are done because they associate with chemo etc. I can't wait for this whole process to be over with!

Radiation treatment

Went in on Monday, layed on the table and was ready to start treatment, and as I listened to the technicians conversation I realized they were not going to give me radiation. When I asked, I was told this was a "dry run" to make sure the plans were correct and everything was in place. I'm all for being accurate but I would have appreciated some communication about this as I spent Monday morning working myself up for this to start. I left there a bit frustrated by the fact that I would go through this whole emotional roller coaster one more time! They did however, provide some teaching after the "dry run" to help prepare me for possible side effects and we discussed diet as that can become a big issue with radiation. Even though the pelvic region is the main area for radiation, the bowels and bladder take a bit of a hit as well. I was told early on not to eat fiber during radiation but that is my diet so I wasn't sure what I was going to do. I was also told not to lose any weight and to try and eat some extra protein. I bluntly told my nurse that if I can't eat fiber, there is no way I will go through treatment without some weight loss. To my surprise, I was instructed to continue to eat the way I have been eating and it's only if I start to have diarrhea that I will have to change things drastically. Because I already have IBS the odds that I will have bowel issues are quite high but I'm praying for protection on this one!
So Tuesday was the start of actual radiation which only takes about 10 mins or so. They take an x-ray each day and then radiation begins and you can always tell because the machine makes a beeping noise the entire time. I pretty much pray for the technicians and for protection while I get treated and then it's over, you really don't feel anything. I was told that I probably wouldn't have any side effects until the 10th or 14th treatment because radiation is cumulative. About an hour after being home I started to feel nauseated and thought it was due to not eating much beforehand, plus nerves. However, throughout Tuesday night the nausea became worse and I became worried. I told Mark I either have a bug or I'm already having a reaction to radiation! By Wednesday morning the nausea was worse and I started vomiting, I wasn't sure I would be able to make it to treatment. It was not a good feeling! Of course my mind started with all the "what ifs," Are they giving me too high a dose? Am I extremely sensitive to radiation? Will I be able to lay still on the table for another dose? Am I going to be able to do this? etc. Fortunately I was able to get the radiation and after discussing with my "team" what I was experiencing, they felt I had a bug and my symptoms had nothing to do with radiation. I was relieved because I simply want to get this portion of treatment over with and the only way to do that is to continue one day at a time. I still have mixed feelings about radiation and I can't say that I'm happy about slowly killing my remaining ovary. I hope it is stubborn and continues to work much longer than they anticipate! In the meantime I wait, wait for side effects and for menopause to hit. There is a strange peace about this waiting period....there is nothing I can do at this point and so I wait for God to show up big (because I'm praying He shows up big) through radiation.
I'm still dealing with some nausea but today is much better than yesterday. I have a total of 25 treatments (which sounds much better than 5 weeks of treatment) and after today, I'll have 22 more to go. This just might be doable.

My last weekend....

This is my last weekend before starting radiation and I'm nervous but really trying to make sure my fears don't get the best of me. I've been trying to quote different scriptures each time I'm aware of a fear popping up and that seems to help me keep things in check. I'm such a "what if" person that these unknowns drive me crazy and while this isn't getting any easier, I guess I'm learning to keep the "what ifs" in check and not get so carried away. I'm actually trying to enjoy these last few days instead of letting my fears rob me of appreciating where I'm currently at. Have you ever noticed how fears actually take from you than help prepare you for what is ahead? I really wish someone could tell me how I will react to radiation and exactly when to expect this or that but that's not how it works. It's one step and day at a time. I'm totally giving this portion of treatment to God and praying that the side effects and menopause symptoms will be very minimal. There is so much out of my control but I'm doing what I can to prevent symptoms from even starting. I've started probiotics in the hope that my bowels won't be too interrupted and hopefully this offers some protection as well. My diet will have to REALLY change with radiation as they recommend you don't eat much fiber. My diet is fiber-filled so I'm trying to find ways to eat somewhat healthy in spite of all of this. In the meantime, I've been eating tons of salad and popcorn as that's what I love and know I will miss the most. I have been craving coffee something bad lately and finally made a pot today, it is wonderful!! I know I won't be able to drink it with radiation, so hopefully I'll get my fill of it this weekend to last me for awhile. I've talked so much about the negative things about radiation but there are some perks to it believe it or not. Radiation does not affect my blood counts, so I won't have to be so careful about being around sick people and I won't have to get weekly blood tests. Also, my hair will start to grow back while I'm off of chemo. However, I'm not going to let it grow back just to have it all fall out again, so I'll be shaving my head throughout this process. I have to say that I have REALLY enjoyed not shaving and it will be weird to start doing that again. It looks like I may keep some eyelashes throughout this whole ordeal and I'm very happy about that, they have definitely thinned but I've still got some. I tried putting on the fake eyelashes and I'm not sure how people wear them, it felt odd and let me just say it's not that easy to put on yourself! I won't give up on this that easily but I'm seriously hoping some of my lashes come back while I'm doing radiation. I honestly can't believe it's time for this portion of treatment, it's something I have dreaded and feared and I'm about to walk through it. Part of me wishes I could back out of this, but another part of me wants to get this over with because I'll be that much closer to being done!

Grace continues to improve which I'm thankful for. We are not out of the woods as she had aspirated some fluid into her lungs (don't remember if I mentioned that before), it's going to be a slow process. I can definitely say one of my life lessons lately is in patience!

Baby steps

I've been a Christian for many years but through this recent season of trials I am learning all kinds of things about myself and about God. In my honest moments, I am a doubting Thomas and my faith is similar to a baby Christian--I hate to admit it and wish I were further along but that's where I'm at. I've been studying Habakkuk lately because lets face it, I relate to that prophet in many ways and I've been asking similar questions. It's good to know that I can be angry with God and He doesn't leave in frustration or disgust. God simply wants me to be honest because you can't work on something you don't acknowledge or become aware of. Over the last few years I have been struggling with the goodness of God...in every circumstance and situation. I know that God is good but sometimes it doesn't FEEL like what He is doing/allowing is good. There are some circumstances in my life that I can't wrap my mind/heart or both around the fact that in those situations God was good and allowing them to occur was for my good. I don't see the good no matter how hard I search and so that allows doubt and fear to interfere in my relationship with the Lord. It's not a good thing and I know that but how do I change this? Well, this whole ordeal with Grace has been VERY upsetting for me, I wasn't getting much sleep and eating wasn't exactly on the top of my priority list. I was exhausted in every way possible and it truly felt like God had taken His hands off of me (I know He hadn't but the feelings were so real). I had decided that there was no way I could go forward with radiation treatment and take care of Grace, it would truly be too much! I decided to put my treatment on hold until things with Grace were resolved. Practically every test the vets could run showed no definite diagnosis (although the belief is pancreatitis) and they tried a variety of treatments, nothing seemed to be working. This has been such an odd circumstance that I would have to call it spiritual warfare as nothing made sense and it came out of nowhere. I started praying, asking that God show up right now and that He reveal whatever lesson I need to learn because I am running out of time. Have you ever been to such a helpless place that either God is going to show up and show up big or everything will rapidly fall apart? That's where I've been at these last few days and it's such an uncomfortable place to be....until God shows up! On Saturday night, I decided to bring Grace home from the animal ICU as nothing they were doing was working and I simply wanted her to be comfortable in her own bed/surroundings. I was given strict instructions to give her 1/4 cup of water an hour and if she kept it down, she could continue to get another 1/4 cup of water and so on. After several days of only being on IV fluids she was desperate for water and the little amount she was getting didn't satisfy her in the slightest. She constantly checked each water spot in the house and would sit below the counter where her water bowls sat. I found her at times sitting next to the toilets and searching the showers for water. It was very difficult to watch and not simply give her what she wanted. That's when God spoke to me! He showed me that from Grace's perspective withholding water was cruel but by causing her some discomfort now, I was doing what was best for her in the long run. What I was doing was good but it was not going to feel good to her at that moment. I keep looking at my circumstances and with my limited knowledge tell God this isn't good, what you are doing is not good, and make judgements about God that He does not deserve. I'm starting to understand that God IS good all the time even when what He allows does not feel good.

I'm very happy to report that Grace is taking baby steps towards recovery. It started with her keeping water and meds down, then she started sleeping (last night was our first night of full sleep), and now she's taking in small amounts of food. We have a ways to go but each day I'm seeing more of her personality. When I had no where else to go I placed my full weight on God and little by little He is showing me that He is trustworthy. I start radiation treatments on Monday, this lesson came just in time as I head into more unknowns.

p.s. For those that have been praying for Grace--THANK YOU!! It's only by God's grace that she is doing better!