Chicago Bound-Trip #2

I had my blood drawn yesterday morning and the results are in. Everything looks good, all my counts are right where they want them. I guess I better start packing. My flight takes off at 5:50 for Chicago. My mother is going with me this time instead of Bob. With all the kids we thought it would just be simpler if he stayed home with them to keep things as normal as possible. So here's hoping I don't get lost in the airport, and that it's easier than navigating my way out of a parking garage. Those things are tricky...

I'll update when I return.

Hair Today, Gone Tomorrow

 I mentally prepared myself and I did it. I cut all my hair off. And it wasn't as bad as I thought it would be.

The picture to the right is a picture of the hair I lost in one day, just from today.  If you can't tell from the picture, it's a pretty significant amount. But even with all the hair I lost, I still had a lot on my head. My hair still looked good. But after yesterday, feeling so down, I sat and really thought. I came to the realization that I am not who I am because of my hair. And if I lose my hair, or my breasts, or my arms, or my legs, it wouldn't change who I am. It might change how I function, but it doesn't have to change me. I always try to set a good example for my children. What would I be saying to them, without saying it, by letting something as stupid as hair dictate how I feel. It isn't what we look like on the outside, it's who we are on the inside that counts, isn't this what we are always saying to our children. Here was my chance to prove it.

So with Bob, the four younger kids, my two sisters, mother, and best friend with me for moral support I did it. I put my hair in four ponytails and had each kid cut one off. Once that was all done I had each one of them take turns with the clippers. Then my one sister finished cutting it while the other continued to take pictures for me. Yes, I wanted pictures of the whole thing. And when it was all done I actually felt better. Strange, right?  But I did. No more hair to wrestle with in the shower, or pull off my clothing, or untangle from my hands after touching my head. And my little Aiden wanted to show his support for his mommy, so we buzzed his head, too.

Aiden and me after our hair cuts

Blah, Blah, Blah

That is exactly how I feel.  It's been a rough few days. Between the medicine they have me on to increase my white blood cell count and the constant shedding of my hair it has taken a toll on me mentally.

Bob has been giving me my daily injections of neupogen. I got the fifth and final shot last night. Now that I'm done I hope to start feeling better quickly.  It really is a very close second to the chemo in terms of how badly it makes me feel. It has made me so tired that I'm asleep more than I'm awake. I have such a horrible headache when I wake up in the mornings it hurts to even open my eyes. Most of the pain is right behind my eye sockets. My legs hurt so badly that when I walk down the steps it feels as though they may snap in half, although I know that they won't. And let's not forget about the nausea.  So pray that this medicine has done what it was intended to do, increase my white blood cell count, and that I'll be able to get treatment on Friday, not that that's what I want either.

That's probably another reason for the mental funk I've been in. On top of being in physical pain, I've been trying to prepare myself mentally for another round of chemo. This is when I just want to throw myself on the floor, kick and scream, and kick some more until somebody gives into to me and says "alright, already, you don't have to have another treatment, just be quiet!!!", but there is no such person. And throwing temper tantrums isn't going to help me.  I have no choice but to pick myself back up (mentally) and keep moving forward. So I'll follow the advice my brother gave me, be brave. Even though it's really the last thing I feel like being.

And since there is nothing like being kicked when you're already down, my hair continues to fall out everyday.  I was excited when I made it past the 14th day and still had my hair, and in some strange way I do feel some sense of satisfaction that it has made it this long.  Today is day 22 since my first chemo treatment. If I had stayed with my Pittsburgh doctors treatment #2 would have been yesterday. The significance of that? They told me I wouldn't have any hair left by the time of my second treatment. And I do.   It is thinner of course, but not patchy, so I still haven't committed to shaving it just yet. Why wait? Maybe because part of me still can't accept this as reality. Maybe because somewhere in the back of my mind I think I have some small chance that it will stop falling out and I can avoid shaving it. Really, I have no idea why I'm waiting. I guess simply because I'm just not ready yet.

Sleep, Sleep, and More Sleep

I've never been one who needed much sleep. If I got 5 or 6 hours that was plenty for me to feel rested and be completely functional. But this injection of neupogen they have me on to increase my white blood cells has me wiped out!! I'm sleeping 12-14 hours at a time. In a 24 hour period, I slept 18 of them. I woke up around 12:30 today, Bob made me something to eat and now I'm ready to go back to sleep, which is exactly what I am going to do.

CTCA Day 2-part two

Yesterday's post was a quick overview of how my day went. I'll describe it in more detail now that I am feeling better.

We arrived at the hospital early yesterday( Thursday) morning to again eat breakfast before another long day. I was to have an appointment with the oncologist, naturopath, nutritionist, and nurse navigator. My first appointment was scheduled for 8:45 with the oncologist.

We entered the exam room after waiting just a few short minutes. The nurse did her usual thing, temperature, blood pressure, asked a few questions, and exited the room. The doctor, who spoke with a Scottish accent, entered shortly after the nurse had left.

He was an older gentleman. He was very knowledgeable and took a lot of time explaining my situation to me in depth. And I asked lots of questions, so many he asked what I did for a living because he thought I had a medical background. I just laughed and smiled. I thought to myself, no it's called google and my natural curiosity of wanting to know the answers to why and how. Anyway, he had a new plan, unfortunately one that still involved chemo.

 The plan when I was seeing the doctors in Pittsburgh was a total of 8 rounds of chemo therapy, 4 of a combination of adriamycin (nicknamed the RED DEVIL) and cytoxin, and 4 of another called taxotere. The rounds would be given 3 weeks apart which meant I would be done in July. The new plan, his plan, was 4 rounds of chemo total, so just 3 more. He said he wouldn't have given me the kind that the Pittsburgh doctors had given me, calling it old fashioned. But since I had already had it, he would give me one more round of that, then 2 rounds of another combination, a combination with less side effects, both immediate and long term. I was relieved, but just slightly. I really, really, really don't want chemo at all, but who does.

There is good news. Based on the physical exam the lump has decreased in size significantly. It was originally 1 and 1/2 centimeters according to the sonogram back in the early part of February. It is now less than 1 centimeter.

The doctor was also aware of our situation from the previous day when everything had basically gone wrong. He actually already had a full schedule but when our nurse navigator told him what had happened, he had agreed to see me. He added that we never should have been brought out to Chicago this week and that he would personally speak to administration about paying for our next trip, both the flight and hotel.

He went over my lab results with me as well. My white blood cell count is only 170, which apparently is very low, so chemo therapy isn't possible at this time, which is fine by me. I really need time to mentally prepare for the next round anyway. As I had mentioned in my last post, they gave me an injection of neupogen at the hospital. I will need to continue it for 4 days at home by self injecting. I have several nurses in my family, so this really won't be an issue. I'll just have one of them do it for me. This should increase my white blood cell count enough over the next week that I will be able to return for a treatment next Friday. I will just need to have my blood drawn in Pittsburgh two days prior to my trip to make sure.

Of course no medicine comes without side effects. One of the side effects of neupogen is bone pain and fever. What I experienced yesterday was the same kind of achy feeling you have when you have the flu, expect a large majority of the pain seemed to settle in my lower back making it feel more like back labor. Bob was able to buy some advil at the front desk of the hotel which helped enough that I was just able to go to sleep.

Going back to the rest of my day and the rest of my appointments, I really don't have much to say about it. I found that both the naturopath and the nutritionist only had basic knowledge. Some of what I am already doing went above what they knew. I'm sure for a lot of people they would have been helpful, but they weren't for me, which was kind of disappointing. Both of them were very young and inexperienced, which may have been part of it.

The only other thing of any significance was that I had my blood drawn for the genetic testing I had mentioned before. The test is to determine whether I have the gene for breast c*****. They like to do this test when you are diagnosed under 5o years of age. There is only about a 5% chance that I do have the gene and if I do I would have to consider the possibility of a double mastectomy or possibly going through this again in the future. And since I never what to do this again, the choice would be very clear for me.

I almost forgot. We had the opportunity to speak with patient relations yesterday, as well. They will be pulling the tapes from our conversations with their intake specialist, Mark, who gave us all the misguiding information. A lot of what he told us was incorrect and he seemed to be playing into what we wanted to hear. Now, I'm not too terribly upset because I would rather do this plan than the other one, but it's still wrong to mislead people. And the lady we spoke to also assured us that our next trip out here would be covered just as if it were our first.

So that about sums up our second day. The rest of our time at the hospital yesterday was spent going between departments getting everything scheduled for our flight home later today and appointments and flights scheduled for next week. And while it wasn't everything I had hoped for it is better than what I had. Continue to pray for me, it's still a long road ahead to travel.

CTCA Day 2-part one

I will go into more detail about my day later. I just wanted everyone to know that today went better than yesterday. I had an appointment with the oncologist. He does have a plan that does include chemo but slightly different than the plan the doctors in Pittsburgh had.

Sadly my hair has started thinning, not in the way they had described to me, but there is definite shedding going on. I'll wait to see if this continues before making the decision to shave it completely.

My blood count is too low to give me another chemo treatment right now. They gave me an injection of a medicine called neupogen which will increase my white blood cells. One of the side effects-bone pain. So basically I feel like I have the flu.

For now I am going to rest, I just wanted to give you the short update. I will go into more details of their plan and the rest of my day soon.

CTCA Day1

To say that today was a disappointment would be an understatement. I am definitely frustrated about how my first day at the treatment center went. I'll start from the beginning of our trip to catch everyone up.

We left for the airport at 11:30 Tuesday morning, no traffic, short lines going through security, everything was good. Flight was delayed for 45 minutes but not really a big deal. I was so excited to go to Chicago I had forgotten how afraid I am to fly. It wasn't until the plane started to take off that I was reminded. Taking off and ascending is the worst part for me. After that I'm fine for the most part. I try to just pretend I'm on a train.

We arrived at the Chicago Midway airport, collected our luggage, no problems. Our instructions were to call the treatment center after going to baggage claim and they would send a limo for us. When they said limo I assumed they meant a four door sedan, but no, they actually meant a limo. So we rode from the airport to our hotel in a limo, which was about an hour and a half ride.  What I didn't realize until the driver informed us was that the Radisson we are staying at is in Kenosha, Wisconsin. The treatment center makes all of the flight and hotel arrangements in case you were wondering why I didn't seem to know anything. 

The hotel is about 20 minutes from the hospital. There is a shuttle, provided by the hotel, that leaves every hour for the hospital. They will even take you to local restaurants, shopping outlets, and the Walmart. You just have to choose the shuttle ahead of time to make sure it isn't filled.

There is a lovely restaurant in the hotel. It even has a gluten free menu. It's a bit on the pricey side but very convenient. We had dinner there last night after getting settled into our room. 

This morning, which is Wednesday, was my first day at the treatment center. We got up at 5:30 (6:30 Pennsylvania time) and got ready so we could leave on the 6:30 shuttle. My first appointment wasn't until 8:15 but we wanted to eat breakfast at the hospital. You get $5 per person to spend for breakfast and $7 per person for each lunch and dinner. So unless your eating a whole lot you can eat for free.

First, we met with a man in registration. He walked us through all the paper work, explained the insurance ins and outs, all that happy stuff.

Then we were escorted to my next appointment by some lady. I don't remember her exact title but it's her job to get us to where we needed to be so we didn't get overwhelmed or lost on our first day there. Maybe someone called ahead and warned her that that was a very real possibility with me. 

So everything was okay so far. Everyone we had met was very friendly, very helpful. I still had hope at this point. But it was only around 9:20 in the morning. So much time for things to go wrong and they did.

I was taken to an exam room where I was to wait to be seen by several people. I was scheduled to meet my patient navigator, a nurse who would take my vitals and go over my medical history, and eventually a doctor, not an oncologist but an internist for an initial exam. This was the first of my disappointments. 

When I eventually met with the doctor after waiting in this small exam room for over two hours, she basically reiterated what my doctors in Pittsburgh had told me, that chemo was a must. That because my specific type was so aggressive and because I am so young that it was absolutely necessary to have chemo. At first I was very saddened by this. Then I reminded myself that she is only one doctor, not even the oncologist, and she is going off of nothing but my medical records. So I decided I wasn't going to let what she said bother me. She ordered blood work and an EKG and she went on her way. Someone came to draw my blood. Then someone else came to do an EKG.  Then after a grand total of 3 and 1/2 hours in this very small room I could finally leave. 

The plan was to go eat lunch and then return to the same floor to pick up a schedule that they would be working on while I was eating. This schedule would have the days I would see the nutritionist, naturopathic doctor, oncologist and a surgeon. Then after I see all of those people they sit down together and discuss a plan for me. 

So I went and ate. And when I returned I waited and waited. I waited for an hour for the lady who had been working on my schedule. Keep in mind that I was originally told to plan on the initial visit being 3-5 days. Then I was told 3-5 business days which is completely different. When I looked at this schedule there was basically nothing scheduled for tomorrow, Thursday, the nutritionist and naturopath were scheduled for Friday, and then the oncologist wasn't scheduled until next Thursday, over a week from now. Then she added that she wasn't able to schedule an appointment with the surgeon yet but that she hoped she could get me in for the Friday after the oncologist. REALLY?!!! She added that she wasn't sure if they would have me go home in the mean time and then fly back out or what they would want me to do. I should also mention that at some point during the day we learned that they only pay for the caregiver's plane ticket the first time out. After that they will only pay for mine. Which was not what we were originally told on the phone.

By this point I had been at the hospital for about 7 hours and had accomplished basically nothing. I had blood work and an EKG. Oh and don't forget the useless doctor that I didn't ever want to see again. I'm missing seven days of work for this trip that I won't get paid for because I have already used all my personal/sick days. Bob is self employed so every day we're here is lost money for him too. And now they are telling me that they can't even schedule me with the oncologist and surgeon till next week. So please tell me again why I'm here?

 I was beyond irritated. I usually don't voice my frustration, but this was too much. I wasn't going to let this go.  Bob was irate.  He had decided to excuse himself from the conversation when she was going over the schedule which was probably best.

At this point she had now left to go make some phone calls to see what she could do. It was then another hour before I would see anyone again. This time my patient navigator had come out, apologizing. Bob and I both explained to her what had been told to us over the phone during that initial conversation and that none of that seemed to be true. I said I felt like it was all smoke and mirrors. And I asked if their telephone intake personnel were paid on commission. I was talking very nicely to her but it was very obvious that I was upset. She kept apologizing and told us we needed to complain to customer relations, which we will, only Bob and I both thought it would be better if he didn't talk to them that day because of how mad he was.

She agreed to keep working on the scheduling problem and eventually called me to let me know I would see an oncologist tomorrow, Thursday. It's not the same one I was originally going to see which was a breast specialist, so I'm not sure what to expect. They also changed my appointments with the naturopath and the nutritionist to tomorrow. I'm hesitant to be excited about the rest of this trip and I am really not feeling hopeful that anything good will come out of it.

I should have known that it wasn't going to be a good day when the hotel hairdryer broke while I was fixing my hair this morning...oh yeah, that's right. I forgot to mention I still have my hair. It never fell out. 

I'm trying to look at this situation in a more positive way. ALL things happen for a reason. And even if I don't know what that reason is now and maybe I'll never know, I have to believe that this is what was suppose to happen.

Woo-Hoo!!

It's Tuesday morning, day 15, and I still have hair!!! Just wanted to share that with everyone. It's also the day we are leaving for Chicago to go the C***** Treatment Centers of America and I'm still not packed. We're leaving for the airport around 11:30 for our 3:00 flight. I'll update when I can. I'm sure there will be lots to share.

Hair Status

As I had mentioned in previous posts, I am due to lose my hair on day fourteen, at least this is what I've been told. I believe each chemo medicine is different when it comes to hair loss. I was given Adriamycin  and Cytoxan. When combined I have a 92% chance I will lose my hair. If I count the Monday I got my first treatment as day one then today would be day 14. But if day one doesn't start until after 24 hours has passed, then tomorrow will be day 14. Since I woke up and still had hair today, then I guess tomorrow is the big day.

I actually had a dream last night about my hair falling out. It didn't seem to be traumatic in the dream. When I awoke I immediately checked my pillow to see if there was any hair on it. And nope, nothing. Then I tugged on my hair to see if it would come out. And it didn't.

 The plan is to have my best friend, sisters, mother, and Bob and all the kids here when it is time to shave it. It actually would have been easier to have it happen today. It's Sunday, nobody that I was planning on having here was working. The kids were home from school. But I guess these things don't really happen at my convenience.

In addition to having to prepare myself mentally for tomorrow, I also have a lot to do for our trip to Chicago. Originally I thought we might be there for three or four days, but now it could be as many as eight. So I am trying to get myself ready to go and also get things ready around the house for the kids in our absence.

Thank you for your continued support. It really helps going through this knowing there are so many people who care.

What is chemo like?

What is chemo like?  I hear this question often. I'll try to describe what my experience has been since my first treatment.

The day of the treatment wasn't too bad, physically. The whole process takes a couple of hours. I didn't feel anything strange or weird when it was going in through the IV. By the time I got home from the hospital I just wanted to nap. Even the next day wasn't too bad. I was tired but still able to function and not really that sick. Day two and three were the worst. There was nothing I could do to stop the nausea. Even the prescribed medication didn't help at that point and they have their own set of side effects. The nausea remains for the first week but not as bad.

Nausea wasn't the only reason for not eating. Food of all kinds just didn't taste right or good. Eating spicy food like I would normally do was out of the question. Everything I tried seemed to have too much flavor. I ate Gorilla Munch cereal for days afterward. And then from out of nowhere I had a strong craving for baby cakes (mini hash browns made by McCain) and cold ketchup.

After the first week is when you get tired. I felt pretty good this morning. I had energy at work all day but now it's 6:30 in the evening and I'm ready to go to bed. It's the kind of tired when you have trouble even keeping your eyes open. This is also when I am told I am most susceptible to infections and getting sick. I have to take my temperature throughout the day. If I get a temperature of 100 or above I need to go to the emergency room right away.

And my newest side effect...acne. I'm breaking out on my chest, back, and face. It's like puberty all over again.

So let me recap this for you....nausea, tiredness, foods not tasting right, strong food cravings, and acne. I was thinking about this a few days ago when I had the realization, "Oh yes, I trained during most of my 20's for this!! It's just like being pregnant (only more extreme). So I got this. I've done this 5 times before. But this time I will feel sick for one week, tired for one week, then feeling better for one week, and just when I start to feel back to normal it's time for another treatment. The cycle continues 8 times.

Oh yes, there is one other thing I didn't mention, hair loss. Hair loss takes place 14 days after my first treatment which means only 4 more days left. The countdown is on. And as much as I have tried to prepare myself for that moment I'm not sure it will help when it is actually time.

Crazy? Maybe.....

Okay, so I am going to share a recent experience with you all. Some of you may think I have completely lost my mind, but I assure you I haven't. Or maybe I have and just don't know it.

Let me start by saying I believe in traditional Biblical values, God, Jesus is the son of God, the death on the cross, the resurrection, heaven, angels, and the holy spirit. I believe it all. With that being said my story begins....

It was Saturday late evening. I was ready to go to bed. I sat on the edge of my bed still pondering the same question I have since the beginning of this whole situation. Am I making the right decisions? I said "God, I just want to hear from you. I need to know what I should do." At that point I opened up my Bible. Shamefully, I admit that I dusted my Bible off just a few days before this and started reading it again. It has probably sat on a bookshelf for years and not been touched. Anyhow, when I opened my Bible I felt like I was supposed to read Matthew 3. Don't ask me how, it was just what I thought or felt or something. So I read for a little bit and I went to sleep. Next thing I know it's 4am and I sit straight up in bed almost in a panic. All of the sudden I had recalled what I had read the night before, but part of me wasn't sure if I was remembering correctly.  I turn on the little lamp next to my bed trying not to wake Bob. I read it again: "Turn from your sins and turn to God for the kingdom of God is near", Matthew 3:2.  WHAT DOES THAT MEAN!!! Oh my!! Does that mean what I think it means?  That's all that kept going through my head. Immediately I felt like I was being told that I was going to die. All I could think about were my poor children growing up without a mother. All of this time, since finding the lump, I had never had a moment like this. It became so so so real to me that I could die from this. Sure the odds are pretty good in my favor, 85% chance I'll still be alive in 5 years, but what about the other 15%. At this point I am now sobbing. It's 4:30 in the morning and I am now convinced I'm going to die. So I woke Bob up. My intention wasn't to tell him. Really all I wanted was for him to hold me. After he was coherent enough to realize I was crying, he asked me what was wrong. I started by telling him that I didn't want him to think I was crazy and to please not be upset with me. Talking about dying becomes a sensitive issue. Everyone wants you to think positively. I wasn't sure how well this conversation was going to go over. I began to explain what I had experienced and what the scripture said. He said nothing for a long time, well probably 5 minutes, but after you tell someone you are going to die, 5 minutes is a long time not to say anything. Then when he finally spoke he said "honey, we are all going to die. We could die in a car wreck on the way to the hospital. We could die in a plane crash on the way to Chicago." And for whatever reason the words he spoke calmed me even though he was telling me something I already knew. Anyone of us could die at any time. You, or you, or me, or any of us. You could walk out into the street tomorrow and get hit by a bus, without any warning at all. My lump, my diagnosis is just my warning of how short life can be. Not everyone gets a warning. Not everyone gets a chance to "get ready".

My father lived his whole life as an agnostic. He didn't even celebrate Christmas because he didn't want to be hypocritical celebrating a holiday that he truly didn't believe in. He was diagnosed with stage 4 kidney c***** in February of 2005. He only lived 11 months after his diagnosis. During his last year he had time to repair his failed relationships, prepare all his finances, apologize for past wrongs, and even help in planning his own memorial service. But most important of all he accepted Jesus as his savior in those final days. I bring this up because I always viewed my father as blessed. Yes, he died in a very slow way. Yes, that last year was agonizing. But in the very end he had a warning, he knew he was going to die and he had time to prepare and "get ready". And not everyone gets that. 

Do I still think I am going to die from this? Mostly no, but in reality I don't know. I don't think that was the purpose for God having me read that passage. I believe that is a message to all of us. We should be "ready" all the time because we never know when our lives here on Earth will end.

I knew without a doubt that I needed to go to church that morning. We had attempted over the years to try to make it a regular thing but always had accuses for not going. But that morning it was if God plucked me out of bed and got me ready. I didn't experience once side effect from chemo while getting ready to go or while I was sitting during the service.

This wasn't the first time I thought I had heard from God during this time. After I first found the lump, sometime during that first week when I was crying a lot, I had told God "I don't want to do this". This meaning have c*****. And just as if He had cut my thought off , I heard "BUT YOU HAVE TO." I had hoped that I was wrong and that I was imagining it. But as it turned out I didn't.

There is one last part to this story. While I was showering that Sunday morning I felt like I had finally gotten my answer to my question. It came on me so sudden. I felt so strongly from deep inside me, NO MORE CHEMO. Now, I don't want my family and friends that believe chemo is my best and only choice to start to panic. I am going to C***** Treatment Centers of America in Chicago. I plan on doing whatever they recommend. But I also believe that when I felt that feeling of NO MORE CHEMO, that was from God. So prayerfully I continue my journey and hope and pray and believe that when I get to Chicago they tell me that their preferred treatment plan for me at this point is radiation and surgery.

 So have I completely lost my mind? Is this all just too much for me to handle?  Is this just some grand coping mechanism kicking in? Maybe. Maybe not. I guess in time we will know.

Blessed? Yes, blessed

 I have the house to myself. I'm listening to a mixed cd a friend made for me full of motivating "fight" songs. And as I am listening to these songs I'm reflecting back on how everything happened. And truly, I am feeling so blessed.

Yes, I realize I have the big "c" word. I'm still really fortunate.  First of all,  I found the lump, and it's not like I was looking for it. Then, even though it felt like it took forever for a diagnosis, in reality it was only three weeks. Each person, receptionist, nurse, tech, doctor, along the way took me seriously and acted accordingly. They recognized that the situation was one to be taken seriously passing me on to the next person.

 After my diagnosis one of the appointments I had was with an oncologist. These were his words to me, "honey, you are so lucky no one "f" ed up along the way or we would be seeing you a few months down the road with a whole different situation."  And yes he said the word. 

As I had mentioned in a previous post the type I have is invasive ductal carcinoma, more specifically triple negative. Triple negative means that when it was tested it tested negative for the three hormone receptors that often act as fuel, which makes mine more difficult in a sense to treat because they can't treat it with pills.  It also means it is more aggressive. The doctor said mine had a growth rate of 90% which was the fastest growing he had seen in his 26 years experience. But triple negative types respond very well to chemotherapy, so that is a plus.

All along the way doctors kept questioning how I didn't notice such a sizable lump. It was if they were saying "how could you have not noticed this" without saying the words. One had even asked me if I had lost a bunch of weight recently that would have made the lump more noticeable. Nope, been the same size for years. It was really as if it had come out of nowhere. But after test results came back it all made more sense. It's just that the thing is super fast growing.

Bob didn't hesitate. Before I had even had the mammogram/sonogram he was talking to the nutritionist about a meal plan and supplements. They put me on a vegan diet, free of processed, fried, and gmo foods, mostly raw, no sugar, and absolutely no aspartame. OUCH!!! That one was painful, but I knew it had to go. I started juicing vegetables and that became a main staple in my diet. I had to switch to an all natural deodorant (that was rough). And I started taking supplements, lots of them. Honestly, I believe it was because I implemented the dietary changes and added all the cleansing supplements that prevented the cells from spreading while waiting for a diagnosis. If this all sounds a little crazy you should watch the documentary "The China Study". It explains how animal based foods and sugar actually feed c***** cells.

So yes, I have a lot to go through over the next year, but it could have been so much worse. I am blessed. I am thankful. And I know that I will be among the many who have been where I am but they now call themselves survivors.

Answers to My Mental Dilemma

Apparently, trying to work and get treatments is going to be more difficult than I thought. Monday and Tuesday were already scheduled as in-service/parent conferences, so I didn't have to work. Wednesday was conveniently a snow day.  Today was supposed to be my first day back to work. I say supposed to be because I wasn't able to do it. I felt weak and dizzy and like I should be crawled up in a fetal position in my bed. So after a few hours I came home. Although after being home and getting something to eat, other than cereal, which is all I've had for days, I do feel a lot better. So maybe after another day of rest I will feel up to work tomorrow.

In my last post I described my mental dilemma of medical treatments vs. alternative treatments. After some prompting, Bob and I have decided that it would be in my best interest to visit the C***** Treatment Centers of America. From what I have been told it combines a lot of what I like about both into one plan. If I understood correctly they only see patients there with advanced stage or very aggressive types. And since I have a very aggressive type, they'll see me. We leave on March 19th and we'll be out there several days. If I decide to continue treatment with them I would have to fly to Chicago once a month for three days.

Okay, so here is a question most people have (even if they aren't asking it); How long until you lose your hair?  And the answer is, NOT LONG!!!  They say that my hair will begin to fall out 14 days after my first treatment. It takes just a few days to fall out completely and a lot of it happens at night so when I wake up in the morning there will be clumps of hair on my pillow. Yea!! I can't wait.  I have attempted to go wig shopping several times. It's very frustrating to me. None of them feel or look like MY hair. I've never even had my hair colored before, so the idea of having any other colored hair on my head is completely foreign to me. After my last failed attempt, Bob called in my mother, sister, and nieces to help in picking one out for me. He has also picked out different colored human hair and is having a wig made for me. It should be ready on Saturday.

Most people, so I am told, usually wait until their hair starts to fall out and then they either cut it very short or shave it so they don't have to deal with the mess of hair everywhere. I am considering, when it's time, letting my children cut my hair. In my mind it would help them deal better with the fact that Mom is bald. Although, this can only happen if I am mentally stable. I wouldn't want to be an emotional basket case and for the experience to be traumatizing to them. It's something I will have to consider more over the coming days and see where I am mentally when the time comes. Countdown to hair loss: 11 days

Decisions, Decisions

I'm very open about the fact that I really don't have much faith in the medical profession as a whole. I think we are an over-medicated society that is basically just treated for symptoms and not the root cause of the problems. I rarely seek help from a medical doctor. My first stop is always to what some may refer to as alternative treatments, e.i. chiropractors, nutritionists.  Ever since I was a teenager I had this strong dislike of putting medicine into my body for any reason. In my mind if I had a headache there was a reason for it and I would rather figure out why I had the headache than cover it up with a Tylenol.  So now here I am completely dependent on these medical doctors and all their pharmaceuticals to make me better and I can't stand it.

 Truthfully, I am more scared of the long term side effects that the chemotherapy can cause than the diagnosis itself. For anyone not aware of what those side effects are I will share a few; menopause (okay, sure we will all go through it eventually anyway, so not a big deal), organ damage, leukemia (so I possibly just traded one type for another), neuropathy, just to name a few. Sign me right up!!

 So what are my other options you ask? Well, I always thought if ever I was in this situation I would seek alternative therapies such as the Gerson Institute, or Dr. Burzynski in Texas or any of the other alternative clinics. The idea behind these clinics and places like them are that God has designed our bodies to be able to heal themselves and when cleansed from all the environmental poisons we ingest through our water, air, food, plastics, deodorants, ect. and given the proper nutrition we are able to do just that. That's the simplified version. If you're interested in learning more you can watch documentaries on Netflix or Google it. In my head it still seems like the better way.

 So what happened? Why did I not choose only alternative therapies? Partly because there is more that goes into a decision than just what we think in our heads. Fear sets in. Reality sets in. Places like that aren't cheap and insurance doesn't pay for it. I like the idea of not causing my body tremendous amounts of damage, not getting sick and not losing my hair and I also like the idea that I'll be alive in 5-10 years. I honestly didn't want to be in charge of making such decisions.

So this is where I turned to God. He knows what's best for me. If I earnestly seek Him I believe that He will help me make the right decisions.  There is a scripture in the Bible that speaks of drinking poison and it not harming you. So while receiving my first treatment this is the scripture I claimed. I also read Psalm 23:4 Even when I walk through the dark valley of death, I will not be afraid, for you are close beside me, your rod and your staff protect and comfort me. I know that it was strength from God that got me through yesterday and that will carry me through the next 5 months. As far as what the right decision is, I still don't know. I'll continue to seek God, putting one foot in front of the other and considering all my options as I move forward.

Chemo Treatment #1

First chemo treatment down, seven more to go. I'm not going to write too much about my day, but I do want to let everyone know that I'm doing okay. It was a very long day. I had to be at the hospital at 8am for an MRI biopsy that didn't happen. We got through most of the procedure and the doctor didn't feel that it was necessary to actually take the biopsy. This is very good news because that means that it hasn't spread anywhere else. It also means I don't have any additional pain or discomfort to deal with today.

As of right now I'm not experiencing any side effects except tiredness. I feel completely exhausted. I've taken the anti nausea medication they prescribed and if the first one doesn't work they prescribed me an even stronger one.

I'll describe my experience more in depth at some other time, but for now, all I want to do is sleep.

So Here I Sit

It was a Tuesday morning. And just like every Tuesday morning, or any Monday through Friday morning really, the alarm clock started beeping at 5:45. I pushed snooze three times before finally I got out of bed and headed down the hallway. I walked to the bottom of the steps, "Reagan, Aiden, Ian, time to get up. Did you hear me? Time to get moving." Morning routine was underway. I turned and stumbled towards the bathroom. I did what I always do. I turned on the shower, checked in the mirror for new wrinkles on my forehead, used the toilet, and began to undress. WOW!!! Wait a minute, what was that??? That doesn't belong there. I don't go to doctors normally, but I knew right away that this was something I definitely needed to call about and I shouldn't wait.

It would have been nice to have had some kind of warning sign....YOUR LIFE IS ABOUT TO DRASTICALLY CHANGE sign flashing before my eyes. That would have been nice. Or how about a loud siren, or detour ahead. Anything. But no. It doesn't work like that. In an instant, a split second, that very moment I reached up and found the lump in my breast, my life was different. And without any warning sign at all.

I carried on with my morning. I got ready for work. Bob got up and got the kids ready for school and on the bus. Everything else went on as usual. But I still had a problem- I had found a lump.  So now what was I going to do? I had never been in this situation before. But I couldn't do anything yet, it was only 7:15am. The doctors office doesn't even open till 9 and I had to go to work. 

So I left for work, but in the back of my mind all I could think about was my lump. My thoughts were racing nonstop- I'll text my mom, maybe she'll know what I should do.  One of my sisters had found a lump a couple of months ago. It turned out to be a cyst. Maybe this is a cyst. Wonder if it's not a cyst, then what? They're going to cut it off. Where else in my body is it? I hope it hasn't spread to my brain.- I must have had hundreds of thoughts like these, one after another, all day long. 

Every minute until 9am seemed to take an hour. Then of course you can't call a doctor's office and expect they will just put the doctor on the phone. So I waited. By the end of the day I had an appointment....for Thursday. THURSDAY!! It was only Tuesday and they wanted me to wait till Thursday. More waiting. More thinking. And course there was crying. 

It was finally Thursday.  I sat in the waiting room of the doctor's office fighting back tears, anxious to hear what he had to say. By the time it was my turn I could no longer hold the tears back. The doctor spent the first part of the appointment just talking to me. He said  "Lots of woman discover lumps in their breasts and most of them turn out to be nothing. Given your age it's probably just a cyst." Okay, I felt better. If he said it's nothing, then it's probably nothing. Then he examined me. His whole demeanor changed after the exam. "Well", he said, "I'm definitely more concerned now then before I examined you." But of course he still couldn't say what it was because he didn't know. All he could say for sure was that it wasn't a cyst. I left there with a script in hand for a mammogram and a sonogram, a knot in my stomach, and tears running down my face.

When my dad was sick he had a yellow legal pad that he wrote down everything in, all of his appointments, medications, things he wanted to remember, and towards the end his plans for his memorial service. As I sat there with the phone in my hand making my own appointment, I had a realization. There I was, on the 7th anniversary of the day my father had died, with my very own yellow legal pad, literally.

I made the first available appointment. The earliest they could get me in was Tuesday. TUESDAY!!! Don't they know this is only Thursday?!!! Great, more waiting. That was five days away.  I was at their mercy. Every day seemed like a year and still my mind was filled with constant thoughts- wonder what I'll look like bald. How am I going to tell the kids.  If I die, wonder who will come to my funeral. Did this mole change colors? Maybe I have skin cancer. 

When Tuesday arrived, I had hoped that I would finally have some answers. Even though it had only been a week since I had first found the lump, it seemed like years. I just wanted to know already, good or bad. Tell me something. But nothing.  I needed to schedule another test. This time I needed to schedule a biopsy.

I felt like I was on a game show. Except with this type of game show you'd want to be eliminated. But instead I just kept getting passed on to the next round, getting closer and closer to the grand prize that you wouldn't want.

The biopsy was scheduled. Now all I had to do was wait nine long days. Fortunately, four of those days were Junior Bible Quiz district finals in Hershey, Pa.  The trip did serve as a very good distraction. There wasn't any time while we were away for constant, nonstop thoughts, or crying.

After we returned from our trip I still had four more days to wait. I tried during the days leading up to my biopsy to focus on all the positives. There are situations that are, in my opinion, worse than mine. Certainly, I wasn't going to be happy about a diagnosis, but I was very thankful that it was me we were waiting to hear about and not one of my children. (I actually have a whole list of possible worse situations I can share at some later time.)

This was it. The last stop. After I had my biopsy I would just wait one more time till I had answers, good or bad.  The results would take 2-4 business days. So I could hear something anytime from Monday to Wednesday.  I had hoped that the breast center would call on Monday. It was Presidents' Day and I was off work. Hour, after hour, after hour I waited on that Monday. When it neared 5 o'clock I really thought I wasn't going to hear anything. Minutes later the phone rang. But it wasn't the breast center, it was my doctor.   I hadn't expected him to be calling me.  With giant butterflies in my stomach I answered the phone.  Me~ "Hello." Dr.~ "Tara, how are you?". Me~ "It's been a long week." Dr.~"Yeah, I can imagine. So tell me what they told you." Me~"I haven't talked to anyone yet."  Dr.~"Oh. Okay. I had assumed that they had called you." Me~ No, they haven't. But I think I would rather hear this from you." Dr.~"Well, then I'll tell you. It's not good. You have invasive ductal carcinoma." And that was it.  There was my answer.  My head dropped to the kitchen counter. I thought I had prepared myself to hear that, but when he said those words, it all became so real. There were no more maybe's or might be's, just what was.  I managed to hold it together while I was on the phone. Then, I sobbed and sobbed and sobbed. I was devastated.  How could this be happening?

Okay, so now what? I knew what I had. What's next.  Family had to be told. But who was going to tell them? I certainly didn't feel like talking to anyone. Someone had to tell the kids. And friends would have to be told. 

I had appointments to schedule. First, I needed to meet with a surgeon (3 days post diagnosis). I called him the man with a plan. He was the one who decided what order everything would happen, chemo first followed by surgery and radiation. He was also the one to describe to me exactly what type I had, triple negative.  Triple negative? What does that mean?  He explained that, too. Growth rate? 90%....the fastest growth rate he had seen in his 26 years experience. 

Next, I met with oncology (1 week post diagnosis). That was the hardest appointment up till that point. After touring the chemo rooms it's pretty hard to continue to be in denial.  They also told me the exact type of chemo I would be on and all the possible side effects. The countdown was on - chemo would begin in one week. But hold on....there are lots of  tests that still had to be done. I needed an MRI to know whether it had spread to the lymph nodes. I needed a heart sonogram to make sure my heart was strong enough for chemo. I would need to talk with Genetics to determine if I had a mutated gene that caused this. If I do I will need to consider a double mastectomy. I needed to talk to my patient navigator. There's no time for a port to be put in, so that's waiting till the second round of chemo. And don't forget about blood work.

So the MRI was scheduled for the day after oncology and the heart sonogram for the day after that.  All the  doctors had felt that there wasn't any lymph node involvement, so I really wasn't even thinking about the results of the MRI too much. But I guess there was one thing that I had overlooked, the possibility that it had spread to the other breast. 

So here I sit. Tomorrow is the big day, my first chemo treatment. As if that isn't enough for one day, I need to have an MRI biopsy because the MRI showed something in the other breast. So tomorrow morning at 8am I'll get that done, followed by chemo at 12:25. I'm ready for someone to wake me up now. It all seems so surreal, too horrible to be happening to me. Except it is and there's nothing I can do to change it.