Jackson

It's hard to believe I have chemo again on Monday, the time has flown! I've really enjoyed working at the Breast Care Center, things settled emotionally just when I needed them to. I shared a small part of my story with a few patients that I felt needed to know I truly understand what they are going through and they seemed to relax instantly. There is no replacement for talking with others who are on a similar journey as yourself. One patient actually ministered to me as her faith was incredible and her attitude was "why not me?" I hope I helped those I came in contact with these last couple of weeks. If anything else, it simply felt good to pray over my patients who were about to get the type of news you never want to hear. Their worlds will never be the same from that point forward and that's not necessarily a bad thing. Also, I've found one of the bonuses to working during our heat wave this summer is air conditioning, makes the hot flashes more manageable.

I'm managing the insomnia so far with ativan which really is a temporary fix, I'm just thankful to get some sleep even though I hate taking a drug to do it! I plan to revisit this issue on Monday with Dr P's PA, hopefully, we can develop a long-term plan. Part of my lack of sleep now is due to the new addition to our family, Jackson. The timing of getting a puppy and purposely adding new stresses is crazy and I don't normally make rash decisions like this. Mark and I have discussed why get a puppy now of all times as Jackson has turned our lives upside down yet again (although he is worth it). I can't seem to shake the feeling that this treament won't work, I'm praying this isn't the case but it's a real possibility. So part of me feels like doing the things I truly enjoy while I can and animals are like therapy to me. I think another reason we got Jackson at this insane time in our lives is because I'm at that point where I'm SO ready for treatment to be over. I'm tired of being poked and prodded, I'm tired of going to the hospital as a patient, I'm tired of being tired, and I'm especially worn out from all the unknowns. I've been told the way I feel lately about treatment is very normal, most people are beyond ready to be done when they are close to the end of treatment. That's reassuring! A puppy is very time consuming and gives me a whole new immediate purpose as we try to get him potty trained among other things. :) The focus is off of me and my whole cancer ordeal and gets put on Jackson and helping Grace and Jez accept this new part of the family. It's nice to not think about cancer stuff so much lately, even if part of that is because I'm so exhausted and busy each day. I hope the girls start to accept Jackson, it makes it even more difficult when we are trying to make sure he doesn't get attacked! I love having a puppy around though, wish they could stay this size but with act like an adult dog forever.

Insomnia

I'm struggling a bit emotionally with this job as I'm working closely with newly diagnosed breast cancer patients. Many of these patients are told seconds before I start to work with them and it's difficult to watch them try to absorb all that they have been told. It's still a bit too personal for me at times. My heart goes out to all of them but those close to my age or younger than me is especially difficult, I'm having a hard time keeping the distance that is needed to do a good job. I sat in on a tumor board today where all the physicians and head nurses that work with these patients get together to discuss certain cases and brainstorm to make sure they are offering them the best care possible. I was doing fine until they started to discuss a 28 year old whose breast cancer story had lots of similarities to my own. As they discussed that she should never become pregnant (her cancer is estrogen sensitive meaning estrogen feeds the cancer) and that she needed to start a medication asap that would put her into menopause, I was fighting back tears. There are several issues to her case that baffle the doctors that they honestly don't know what her prognosis will be. I found myself wondering if my case sparked many of the same discussions among the tumor board that reviewed my case. It was very eye opening for me and I have new questions for Dr P and I want the blunt answers. Don't get me wrong, I'm very thankful for this opportunity, it's just an adjustment emotionally as I try to create a little bit of distance so I can help each patients cancer journey get off to a good start. Next week I'm totally on my own, so I really hope to pull all my emotions together by then!

I am REALLY starting to struggle with this whole menopause deal. I'm starting to question whether or not I can do this without hormones and I want some straight answers as to my risks should I take them. The hot flashes are very unpleasant but I can deal with that for now, it's the insomnia that's getting to me big time. It takes me forever to fall asleep no matter how tired I am and then I'm up every hour after that. I'm wired at night and the night sweats don't help. It's worrisome to me because I know just how important sleep is to the immune system, let alone the whole healing process. How can my body try to heal from all that has been done to it lately, let alone fight off things I'm being exposed to if I don't sleep? I'm starting to lose it mentally and emotionally because of this chronic lack of sleep and that's not good. It's only a matter of time before I start making poor decisions! I'm calling Dr P's office tomorrow to see what my options are at this point; I'm a minimalist when it comes to taking meds so I'm not sure what to do at this point. I've tried benadryl but that is no longer working and I don't want to wake up in the morning feeling groggy as so many other meds tend to do. I don't know, part of me feels like telling Dr P I'm done with menopause, give me back some estrogen and I'll accept whatever risk comes with it. Going into menopause at 32 is NOT normal and going into it in a matter of weeks is also abnormal. In some ways I feel betrayed as Dr P promised I would get through this with a good quality of life....this is not the quality of life that I want! I'm angry with the way things are going lately and yet I know God has blessed me in many other ways, it's hard to keep a balanced view point lately.

Room for growth

I'm finding that it takes me a bit longer to recover from chemo and not sure if that's just the way things go, or a combo of the heat and menopause issues. The neulasta shot wasn't too bad this time with the 24hr claritin, makes a noticeable difference. The other blessing to this cycle is that I kept my taste throughout, no more metallic tastes...thanks for the med change Dr P! The bad news is that I'm in full on menopause and overall it isn't too bad BUT I'm not sleeping well at all anymore. I'm hoping this has more to do with our recent heatwave otherwise, I'm going to need some hormones as soon as I've completed treatment. I've always been a good sleeper and I want to stay that way!


It's been a humbling day today, ever feel like you are growing in a certain area and then something pops up and your reaction proves you have lots more room for growth? I freaked out over something ridiculous and reacted quite badly towards Mark. I am SO thankful God has given me a very patient husband who was able to look beyond my surface reaction to the core of the issue. I've been letting stress and fear build to the point that it's getting in the way of who I know God to be. Suddenly God becomes quite small and my circumstances, unknowns, fears etc. become much bigger which doesn't help me be the kind of person I'm called to be.
The hospital called and asked me to work in the Breast Care Center for the next two weeks with newly diagnosed breast cancer patients. This is a huge blessing as they are taking into account my needs at this time and the fact that I can't work 12hr shifts yet, plus I won't have the same type of patient contact, which is good while I don't have an immune system. However, I haven't worked a 40hr work week since Feb and I'm a bit nervous that I won't have the endurance for this job. I would rather fail than not try it at this point, but I don't want to disappoint anyone as there is no back-up for this position. I think I'm putting a lot of pressure on myself to work as I feel guilty for being such a financial drain. I know Mark doesn't feel this way but it still bothers me a great deal. I'm growing more and more anxious as treatment comes to a close because I'm afraid there is more bad news ahead. I guess if I'm honest, I have an unsettling feeling about this last portion of treatment, like something is going to go wrong and I'm not sure where this is coming from. I'm also afraid that I will complete treatment only to find out that it didn't work, that I've got to live with cancer and chemo for the rest of my life. These thoughts can be overwhelming at times, I desperately need this cancer ordeal to end with my last treatment in August. So all this stuff came to the surface today with my freak out and I hope sharing it all with Mark doesn't burden him. I know he has been carrying a lot since my cancer diagnosis too. He reminded me that all we can do is live in the present, the future will unfold exactly how it is supposed to and as always, God will give us exactly what we need when we need it. I know he is right, I guess I need to spend more time reminding myself of who God is and that alone should keep some of my fears in check. I find it interesting how often God uses Mark to teach me things. I'm thankful Mark is on this journey with me and hopefully my actions will show him that more often.

Chemo day 1&2, cycle 4

Day 1
I went into chemo much more relaxed this time around, that's the bonus to already knowing what to expect. My nurse was the same nurse I had when Lisa was visiting and she doesn't have the best/safest techniques so I was a bit on edge. Again, she did not wipe of the hubs with alcohol prior to injecting meds which is a huge break in clean technique! I was prepared to ask her to please use alcohol but it all happened so fast that I didn't have time, so I simply prayed for protection. If she is my nurse these next two times I have a plan to make sure she wipes off the hubs prior to using them! Anyway, chemo went quite well with the only difference being that I was quite exhausted right from the start this time around and tried to sleep for most of the infusions. My hot flashes added an additional challenge but overall things went very well. Dr P has taken one of the drugs off the cocktail as he is finding it really doesn't have the protective properties as once thought and is full of additional unwanted side effects. To be honest, I was a bit nervous they weren't giving me this drug but tried to trust that Dr P knows best on this one. It made quite a difference not getting that drug, I had no nausea and I'm finding that my taste buds have not been altered this time around. I always assumed my tastes changed with the carboplatin but it was the cocktail prior to chemo that was causing this unwanted side effect. This is a wonderful blessing as I wasn't sure how I was going to stay properly hydrated these next five days when water is crucial. With the first three cycles I ate lots of soup which helped me in the fluid department but it's just too hot for soup now, so I was a bit concerned. I love positive surprises like this one! I came home from chemo and slept a bit which was annoying as I feel like I've been living on the couch lately. However, I was able to cook dinner and take the dogs for a walk, so I can't complain too much.

Day 2
I love the steroids given in the cocktail yesterday as this is my best day after chemo, LOTS of energy. This is the day I do all the things most important to me as I know that by tonight I will crash and the steroids will be gone. I'm so happy to report that I still have my taste buds, it is such a wonderful surprise! I'm really trying to drink the prescribed amount of water and so far I'm doing ok. I associate water with chemo and radiation and it's just something I don't care to drink anymore unless it's super hot or I've worked out. I'm hoping when this is all over that association will go away, that and my love for graham crackers will return as chemo ruined that too. I'll be getting the Neulasta shot later this afternoon and hopefully I won't feel too badly afterwards as I've been taking the claritin. I'm really going to try and not complain about this shot as it does keep me out of the hospital and keeps my blood counts up, it's worth it! In about 14 days I will start losing my hair again and I'm actually looking forward to this a bit as it will mean a break from shaving. I've been shaving my head throughout radiation so I can't wait to stop doing that. I'm not looking forward to losing my eyelashes and eyebrows again and hoping they hold out for the longest time.
I'm still amazed at all the things I've been able to do throughout treatment, my perspective on cancer has greatly changed and for the better. Living with cancer is doable, I wouldn't ever choose to do this but it's good to know life doesn't have to stop.

Mark got a hair cut today and it is super short! Because he is a blonde it almost looks like he shaved his head to match mine. I'll have to take pics of our matching baldness as his will grow back much faster than mine. :)

Update

My appointment with Dr P didn't answer the many questions I had as neither one of us know why the leg pain. He was more concerned with the fevers but I'm fairly confident that stems from the buffet, either way I was placed on an antibiotic so I'm covered. I asked him several questions about the likelyhood that my cancer could have metastasized to the bone and he really feels that is not the case for me. Papillary serous has a tendency to travel to the organs within the body, not the bone, and he stated that even if it did travel to the bone, I'm on the exact treatment for it. I'm about 98% comfortable with his answers and for now, not going to worry about this as I'm doing so much better overall.
I'm finding that ever since being sick, I'm exhausted a lot of the time and that bothers me. It seems as though I haven't fully come back from being sick and I'm somewhat worried chemo will wipe out the little reserve I have. However, I did not do so well with the antibiotic as it caused insomnia, so I'm sure that's a factor in everything. I'm very thankful to be done with that darn medication! Overall though, I'm much less anxious to go into chemo as there aren't quite as many unknowns and I find this part easier than radiation. If I can do radiation, I can do anything!

What a Fourth!

Mark and I finally celebrated the end of radiation with a meal at Souper Salad and I thoroughly enjoyed it! The next morning I woke up with fever, chills, and whole body aches, it felt like I'd been given a Neulasta shot without the claritin. I wasn't too concerned at first because I've always had a good immune system and figured I'd had enough weeks off from chemo that a good portion of it would help me bounce back quickly. However, as my fever kept climbing and I alternated between freezing and burning up I started to become a bit concerned. I called my sister who is also a nurse because it's always good to get another nurse's opinion and experience. Of course this was the beginning of the weekend because bad things ALWAYS happen on the weekend and because I HATE to call the on-call MD unless it's really important I wanted to see what my sister suggested. The on-call oncologist was very nice and basically put me at ease because he felt I could probably ride this out and my immune system was strong enough that this didn't warrant an ER visit. He interrupted me at one point in our conversation to ask my age because I sounded so young and anytime you hear uterine cancer you expect a post-menopausal woman. He was quite taken aback when I said 32 and asked me to tell him again exactly what stage and type of cancer I had. I have to say that I'm still not quite used to people's response when I tell them my situation, I know my case is bizarre and unnatural but to hear doctor's level of shock is still disturbing. Once he heard papillary serous he said "Oh, you're dealing with a different kind of animal aren't you" and I think that sums it up perfectly, it's a bit chilling because we are talking about cancer here but his statement was perfect. Anyway, I spent Saturday on the couch and honestly didn't drink enough fluids because my body hurt too much to move and I didn't want to keep pestering Mark. Sunday came with little improvement, except that my right groin/thigh was hurting and I thought it was either lymphadema or a blood clot and time would definitely tell the difference. To add injury to insult, I had forgotten to take aspirin on Friday and didn't take it on Saturday because I didn't want to eat and I'm fairly good about not taking aspirin on an empty stomach. I will take an aspirin for the rest of my life due to the Factor V and the fact that I've already had a blood clot to my head. The thing about cancer is that it disturbs the clotting cascade and so in simple terms, anyone with cancer has a higher risk factor for blood clots. That's why I started to suspect a blood clot and knew that if it truly was a clot, the pain would only get worse. (I did take my aspirin on Sunday!) The other big issue going on was that I really couldn't break my fever with tylenol anymore and that wasn't looking too good. By this point, Mark and my family wanted me to go the ER and I probably should have, but I was pretty worried I would be admitted and I knew Dr P was not on-call. I don't want too many doctors on my case because that old saying "too many cooks in the kitchen" applies to physicians too. Mix a control-freak like me with trust issues and that doesn't make for the best patient, I don't go to the ER until I'm 100% certain it's a must...and I wasn't at that point. I will admit now that I was a bit worried with the direction that things were going, I kept thinking about sepsis and how fluid is so important so I made a better effort at drinking. By Sunday night the pain in my leg was pretty bad coupled with the fact that tylenol was no longer dropping my fever at all, I knew we should probably go to the ER but it was the fourth and I KNOW how busy the ER is on this night. There was no way I was going in so I started praying that God would not only help get through the night okay but protect me from this maybe not so wise decision. I actually slept fairly decently, however, my poor husband did not as he said I kept moaning every time I turned. Early Monday morning when I tried to stand up I could no longer bear weight on my right leg as the pain was incredible and the leg was warm to the touch. I was now at that 100% point and told Mark we have got to go the ER right now, I couldn't wait for Dr P's office to open. We have a pair of crutches so I used those to help me get around, Mark had to help me get dressed and we started to pack an overnight bag because I was pretty sure I would be admitted and I wanted to be prepared this time. In the bathroom, I was telling Mark which things to pack when I suddenly started to feel odd, the last thing I said to Mark was "I think I'm going to pass out." I came to with Mark hovering over me yelling "no" with a panicked look on his face that I've never seen before. I couldn't quite piece together what was happening as I felt as though I was waking up from a peaceful sleep but by the look on his face, and the tone of his voice I knew something bad was occurring. I told him to call 911 and within seconds things started to come together as I was propped up against the bathroom floor. Fortunately, Mark was able to lower me to the floor so I never hit anything! This was a whole new humbling experience for me for a variety of reasons! I'm at that point in treatment where I forget that I don't have hair, so to see the medical professionals faces when they see me quickly reminds me of this fact. They have this look of whoa-what-are-we-dealing-with-here and let me tell you I get every one's attention rather quickly. Anyway, to make a longer story short, after all kinds of work-up I don't have a blood clot or massive infection (praise God) and my fever actually broke at the hospital. The bad news is that we don't know what's going on with my leg and that's a bit concerning. As we were getting ready to be discharged the ER doc mentioned to me that one possibility for the leg pain could me metastasis to the bone and that I should check that out with Dr P asap. That thought had never occurred to me and in one second he absolutely freaked me out! I got in the car and the watershed of tears began as the "what ifs" started, it was as though I had been given the cancer diagnosis all over again. I felt defeated and angry all at the same time, it was a major where-are-you-God moment! I'm getting a little better at not going to the worst place and assuming that's my outcome (after a few minutes), my fears didn't totally consume me this time either. I was discharged with scripts for antibiotics and narcotics and no answers to my truckload of questions, it was unsettling to say the least. I could write a few stories of how Mark and I managed throughout that day with me still unable to bear weight on the leg but this post is long enough. I'm still scheduled for chemo on the 12th with a new plan to see Dr P this Thursday about my leg. It has actually gotten much better, I'm walking with a limp but at least I'm walking, and the weight of my clothes no longer cause a great deal of pain to the leg. It's very unsettling to not know what's going on and know I'm about to wipe out my immune system again. It's another leap of faith that God is in control in spite of my confusing circumstances. I'm growing a bit weary of these faith lessons but I have a feeling there's still plenty more ahead.

Rest and Recovery

Mark and I were able to visit my family in AZ and even though it was hot, it was a wonderful time. It was great to stay away from hospitals and not be poked or prodded, this was a much needed break. I really enjoyed spending time with my family, playing with my nieces, and seeing many friends I haven't seen in awhile. I am simply amazed that I'm able to travel and do the things I really want while getting treatment. Honestly, when I was told of the aggressive treatment plan that would last six months, I thought my life as I knew it was over or at least on hold. My whole outlook on cancer is changing, while it does change your life in radical ways, it doesn't mean life is over....it's just different. Also, I have to give God credit for how well I'm doing as I know some people really struggle through their treatments. God has definitely blessed me throughout this process.

Met with Dr P today and it was nice to see him again as it's been awhile. I will probably start chemo again on the 12th so I still get a bit of a break. I have to say that I left his office a bit discouraged as he didn't answer my questions in the ways I had hoped. It's my expectations that get me every time! I'm having more and more hot flashes which really is tolerable except at night, I'm woken up many times and simply not getting good rest. It seems to me that my ovary is not dead at this point but in the process of dying and Dr P agreed, he expects the hot flashes to continue to get a bit worse. There are some meds we can try but I really don't want to go that route just yet. I'd rather do natural things if possible and see if that helps, plus, I'm sure cooler weather will help too. I also asked about his experience with this type of cancer and the recurrence rate because this has been on my mind a lot lately. He wouldn't compare my case with the other cases because there are differences (which I understand) but his vagueness bothers me. He still says I have a good chance at being "cured" and I'm not sure if he really believes that or if he is trying to get me to believe it. I know anything is possible with God and so statistics are just numbers, but if God allowed me to have cancer once, he can certainly allow it to be a lifelong thing too. Lastly, I talked with him about possible scarring from radiation and his view on it was less positive than Dr Monroe. I really hate that the info each give me are conflicting but that's part of why I ask the same questions to each doctor. I figure if they give me the exact same info it's more trustworthy, if it's not, the truth is probably somewhere in the middle. As I left his office, I'm struggling to keep my fears in check. I'm trying to focus on all the ways I've seen God's hand so far, He has taken care of me. When will I stop being afraid of what God allows to take place in my life? When will I fully trust Him? There must be a part of me that still believes what He is doing is not good. It's very frustrating as I want to be a woman of faith and stop worrying about the future that I can't change!

Babies and pregnancy

I'm at that age where pregnancy and babies are all around me and in the beginning of this process it was VERY difficult. It was hard to process how some people who should clearly not be parents become pregnant time and again, while others struggle with a variety of infertility issues. I have a ton of questions related to these issues that won't be answered in this lifetime, and coming to terms with that fact has made it a tiny bit easier. Mark and I dealt with our own infertility issues prior to even knowing I had cancer, so I understand that emotional roller coaster and all I can say is that I'm thankful to be off that journey. My heart truly goes out to those trying to become pregnant and having difficulty. Anyway, I started writing this post because what is bothering me in this season of life is well-meaning friends not telling me they are pregnant until they pretty much have to tell me because of their baby bump. I totally understand their reasons/concerns and honestly initially, I appreciated not hearing baby news all the time as I was dealing with my losses. However, I'm not as fragile as I once was and while there is still a bit of a sting, I'm able to celebrate with others too. I'm at that age where everyone is starting or growing their families and I know that, so please don't tip toe around the subject with me anymore. I appreciate the space people have given me when it comes to kids but I don't need it anymore. I've accepted where I'm at and while that doesn't mean some days aren't hard, I don't fall apart like I once did. It is what it is. Mark and I have talked a lot about adoption (which I believe is a great thing) but we aren't pursuing it at this point in life for a variety of reasons. I hope people don't feel sorry for us because we don't have kids, I don't want to be pitied. In a strange way, Mark and I have become content with where we are in life. Our dogs are our kids and we have wonderful nieces and nephews who we will pour our lives into. We talked the other night and I was surprised to hear Mark say he feels led to join Big Brothers, Big Sisters. I think it's a fabulous idea as he is great with kids and has a lot to offer them! As soon as I'm done with treatment, I want to get involved with the children's ministry at our church and pour my life into those kids as well. This isn't what we initially planned for our lives but I think we are both finding peace in the way it's turning out. Parenthood is a ministry and a very hard one at that and I think our ministry with kids and parents is just starting to unfold itself. God's doing something in this area for us and I'm excited to see what comes of it.