stress, increasing my faith, new chemo dose

     So, we are making it through another week. My doctor had to fill out MORE FMLA paperwork because I didn't go back to work. Which was very upsetting to me. I really wanted to go back to work. He has written me off work until the end of August if I need it. Which is nice and very generous, however, also depressing. I need to work... for a couple reasons... My brain needs the activity. I need the social interaction that work provides. and of course the money. I am sadly down to 60% sick pay and that runs out on June 6th. Then .... boom... it hits... It's scary. 

     Brad keeps reminding me that God has always seen us through (and yes he has, more times than I can count)... but doesn't He get tired of it? Like, oh my gosh! Those Espich's AGAIN?! As a parent, I would get tired of it. I would probably help my child, but still be frustrated with them. However, I can't see as God sees and I don't think as God thinks... So, I'm going to go with He is going to see us through. He loves me. I know God loves me. I know He knows I love Him. I'm just scared. The unknown is out there and scary. 

     So, besides all the tears I have shed in the last week, we are moving along... I had chemo this week which my doctor changed. He dropped the Cytoxan (per my request). I had such a bad experience on day 6 after the last dose and have heard so many things about they Cytoxan, including the symptoms I was having and how it only gets worse, I said no more. Was it the right choice overall? I'm going to go with yes.... He also changed my Adriamycin (the red devil)  I now will be getting an overall 10% reduction of Adriamycin and will only get half of that dose at a time. So, this past Tuesday, I recieved 45% of what I previously had received and will go again this coming Wednesday to get the remaining 45%. It went well this past Tuesday. I came home feeling like poo.... and have been tired, but overall not like I felt the last time. The true test will be Monday... That's when it all fell apart before. So, if Monday is good, I have high hopes. Especially as, again, I go this Wednesday for a dose, then I get a week off. The week after that is the wedding and I go for a dose that week. a little anxious, but I am trusting in God that it will be ok... 
     I have also been fighting a cold/ allergies this week. The pollen count has been high and you actually see if on the cars and sometimes in the air. So, my head is stuffed and my chemo cough has changed from the dry bark that it was (as it is seriously caused by the chemo) to a nice congested cough thanks to all the drainage. I cough all night, all day... I'm taking over the counter meds. No fever. If it were worse, I would call the doc. But I do not think this is bacterial, so no need for antibiotics. I think it is allergies and possibly viral at the worst.

     The other thing that has hit me this week has been people.... it has been an interesting journey with people. People are stunned to learn I have no hair (chemo does that and yes that is a wig). I had someone ask me why they removed my right breast if there was no cancer in it (well, we didn't know how much cancer was in the left breast until the first surgery, so why take a chance on the right breast). Yes, those are prosthetic breasts, I haven't had reconstructive surgery, can't have it yet and not sure if I want it. Then there are the people who check on me every week and have offered to go to chemo with me and have taken me to doctors appointments. Those people I could not do without. Then there are the people that I rarely hear from. That has been interesting too. Brad has had that experience as well. Again, it's been interesting. 
     The other piece is the guilt I feel. I feel horrible because I can't do anything at home. Well, very little anyway... I can do some, but I'm so tired and sometimes so weak, I just sit and watch tv, read or embroider. I feel guilty because 90% of the day, my children and my husband are asking what they can do for me. What can they help me with. I'm not used to that. I'm the care taker. It's hard to switch places. Then my income has dropped and is about to drop completely. That has made me feel absolutely horrible and guilty. We have a wedding in about 3 weeks, car payment, house payment, braces payment, home taxes due in July and other normal bills. I am not contributing to our finances. That makes me feel awful. Brad keeps saying to me, "Did you choose this?" No, no I didn't. I wouldn't wish this on anyone. 

     Thru it all, no matter what.... Jesus is King. He has everything in control. He knew this would happen and He knows what the outcome is going to be and He knows how we are going to get there. I have had the opportunity to spend time with my daughter before she gets married and moves out of our home. I have had the opportunity to spend time with my beautiful, rotten grandsons. I have seen more daytime TV than anyone ever should! I have seen beautiful days. I have also seen my family's faith increase and their love and support for me has been incredible. I cannot believe how much they love me. My husband has been so loving and supportive. A lot of men would leave or walk away. Women too... when faced with a serious illness of their loved one. He has been by my side every step of the way..... I wouldn't trade him for anything... 

So.... as I wait to see what the next few days bring and what chemo does on Wednesday, I will just keep the faith.... even if it is as small as mustard seed on some days. Keep praying and keep looking up! 

After the first bridal shower....

     So..... we last left off I had gone to Chicago and returned from a bridal shower given to Rebekah from Andrew's Chicago family. It was wonderful and good to get away.... So.... what's happened since then.... 

     Well, the next week was a week off from chemo as well. It was not a bad week... I was tired, but ok... nausea would come and go but it was still ok... Then THAT Saturday ANOTHER bridal shower for Rebekah... This time, in Springfield. I was so excited to see people... My sister-in-law, Gena came over from Indiana... some of Andrew's Ohio family came over from Eastern Ohio... I had family from Russellville, Ohio come... It was great! Good food and good times.... 

 

However, prior to that shower, my hair started coming out in clumps... and let me clarify clumps... not like big chunks of hair, but if I ran my fingers thru my hair, multiple hairs would come out every time, everywhere.... So that Monday after the Chicago shower (May 16), I had Brad buzz my head.... I didn't want to be losing hair in my food or anyone elses.... I knew it was only going to get worse...   So, hair buzzed... of course that only lasted a few days.... by that Thursday my hair was coming out even more and leaving bald patches on my head. So Brad again buzzed it down as low as he could and that still wasn't right. So, God love him, he shaved my head for me. It looked soooo much better! I even felt better because I knew that if I rubbed my hand on my head, hair was not going to come out.

 So.... Here I am big bald and beautiful! hahaha Shaved it off and honestly feels better. While it was upseting, it was ok... I knew it was going to come... The interesting thing is you don't just lose the hair on your head. You lose it everywhere and I mean EVERYWHERE! Well, almost, the only places I still have hair are: my arms (WHAT?) and I still have my eyelashes (for now) and my eyebrows, however, I am starting to see bald spots in my eyebrows... So.... That's where I have hair... 

     Interesting to note, my grandsons asked why their Opa was shaving my head. We told him because Oma is sick and needs her hair cut. They were like ok, whatever and have not batted an eye at my bald head. They really haven't seen me too much in my wigs but that's ok.... they are ok with the bald and the little caps.... 

  

A rough physical week/ ER visit

     So, Last week had my first chemo.... things went as expected, then... on Saturday (4 days later), I felt a little better... Brad and I walked about 200 feet. I sat in the yard directing what to pull in the flower bed for about a half hour. I ate a slice of pizza for  dinner!!!

     Sunday morning, got up for church and Mother's Day. My son got me fresh cut flowers and a gorgeous hanging basket (photos to follow of basket at least). We went to church. It was awesome. Went to lunch with my daughter and future son-in-law. Mexican! (can you believe it?) I had part of a "carne asada" meal. It was delicious! 

Life was moving on til Sunday night.... I refunded (vomited) a lot of things that night and cried and cried and cried. I was scared, but also did NOT feel good. I had become weaker thru the day..... Monday morning, up I got to prepare for work. Going back half days. Took a shower (I have a shower chair to sit in). Got out, worked really hard to get my breath and my protonix (pill) refunded. After doing that for a bit, I lay on the bathroom floor for awhile as my daughter called Brad and my boss. Not going in. 

A bit later, Rebekah called my oncologists office. I was so dizzy I could NOT hold my head up and I could not walk 30 feet from my couch to the bathroom without help. Then it got worse. Brad called to check on me. I didn't have strength to talk. He came home. I was convinced that my Hemoglobin as low and I needed a transfusion. He carried me to the truck and informed me we were going to the hospital. He called Dr Filix's office on the way. 

The ER was not a fun trip. In short - REFUSED to use my port. Told me they weren't allowed. Dr Filix told me the next day that this is a lie. Basically could not find anything wrong with me. I had a U/A, CT with and without contrast of my head and chest, CXR (PA and Lat), labs, labs labs..... told me I was dehydrated (although I repeatedly said to them that I had not had any food or drink since Sunday night because I was vomiting it up).... I got 2 bags of 0.9 NS and sent home. I also got a HUGE Hematoma on my hand where they MISSED trying to get blood/ an IV going... 

The next day Brad took me to see Dr Filix.... He said the chemo was too strong. But of course, you don't know if the chemo is too strong for each person until they try it. It happens. So after a lot of discussion, We are dropping the cytoxan (my request) because I have seen and heard from too many women, the cytoxan has sent to them to the ER for breathing issues. The cytoxan did this, did that. All I know is that while the cytoxan infused, my face, left side became numb. I went away, that day, but STILL comes back. No. no more. I even had said if they say  they "can't" unprescribe it, that I will refuse it. But Dr Filix said, no more if that is my choice. The previous plan was Adriamycin (the red devil) and Cytoxan every 14 days. New plan is reduce the total dose of the Adriamycin by 10%, stop the Cytoxan. The Adriamycin will now be administered every 21 days not 14, but not quite like that.... On day 21 I will have HALF of the new does, then 8 days later have HALF of the second dose. We will get thru this round of chemo and then possibly increase the doses of the next drug in the second round. 

I cried most of Tuesday morning.... we had a women's gathering at church that night and I was suposed to give a cardboard testimony. After much prayer and support, I was able to attend. The only day all week I have walked on my own and sat up for more than an hour and did my testimony. It was over 3 hours that night. I will dedicate a special blog for that,... I was COVERED in prayer.... :) 

So, the rest of this week, I have NOT returned to work. I have barely moved out of bed. I have drank so much blue Gatorade, that I see it again when it leaves my body. I lost 12 pounds in one week. Never in my life had a doctor tell me to eat. More than once he said eat. I'm not hungry. I really do eat when I am. I am drinking. Water and Gatorade. I promise. 
I'm just laying around.... but sleeping?

No sleep. Little sleep. They put me back on steriods... well, steriods in, sleep leaves... I"m so tired and so weak and dizzy. but no sleep. I have been up to 2 and 3 in the morning then up again around 7:30 or 8 because those stupid steriods. I am seeking alternate help for appetite and energy. Ask for something for sleep you say? Ok, they have prescribed Ativan, Trazadone... can take them together they said... can increase the dose they said.... So, awake and feeling like something is not right like I'm buzzed..... finally my body caves into the sleep.... 

How to end this week? Well, Rebekah has a bridal shower in Chicago Saturday. I'm going. Come hell or high water, I'm going. So, Rebekah, her maid of honor, Faryn, Brad and myself are heading there this afternoon. Because of this week, I now have a wheelchair and I have a handicap placard for my car. So I'm going.... 

My hair started changing.... feels straw like and wire like. slowly starting to fall out. Where my head rests it is MUCH thinner. I have no energy or strength to fix it. All my color is gone from my hair. I said I want it buzzed. My husband... he complies.... I said I can't go away and have to look good and not be able to do my hair.... So, he buzzed it, mostly.... It's pretty short... I can just wear it like this or I can put a wig or hat or scarf on too. I know the real hair loss is coming. It's coming. But with how I feel right now, no way I can do anything. I want to look less like an escaped mental patient so this is my only hope. :) 

    So.... here we go! 

We also celebrated Jaxson's 4th birthday this week.... I am staying off work for a bit more... Rebekah tried on her wedding dress and it fits! and life is moving on.... they hysterical highlight of the week yesterday.... the boys were in my room, going in and outside... then Jaxson accidentally shut Tucker's hand in the door.... I needed help.... so, I yelled I need an adult! I need an adult! Apparently I am not an adult... At least not a functioning adult.... Oh sweet muffins.... this is going to be a fun ride!!!!!!

Alternate Time Line Part 1

    So, I have had a lot of time on my hands....  I keep thinking.... why did this happen? What caused this? What would my life be like if this HADN'T happened? So I keep thinking of the alternate timeline. What if I had a delorean that could take me back to BEFORE the diagnosis. Maybe I could see what caused this and stop it!  But there are some flaws to all of this. 1) I don't have a delorean or any other kind of time machine. 2) No one knows what caused this. 3) There is no why to be answered. It just is. So I must accept all this and move forward but what if...?

The time line of my life to this point has been.......  (please note as we move to March on this timeline, some dates may be off. Memory not the best today)

January 22, 2016 - appointment with my family doc. Discussed with her my increasing depression and that there are days I am disappointed I wake up. I'm not suicidal, but just tired... don't feel like fighting. My antidepressants are changed, a mammogram is scheduled. 

January 29, 2016 - lump found in left breast. Mammogram already scheduled. 

February 1, 2016 - Mammogram and ultrasound of breast 

February 3, 2016 - biopsy on lumps performed (as ultrasound found TWO)

February 8, 2016 - met with family physician, she told me I have breast cancer. My faithful husband was with me. We went home to tell our kids.  A few weeks ago, I didn't care if I woke up. Now, I'm in a fight for my life. I want to fight now. Wow. 

February 9, 2016 - told my boss and all my co-workers. 

February 10, 2016 - met with surgeon to discuss stage of cancer (IIA at that point) and options. tests ordered

February 15, 2016 - met with oncologist. Discussed options. more tests ordered

February 17, 2016 - marathon of tests - chest xray, ct of abdomen and pelvis, echo-cardiogram, bone scan. All come back fine, no sign of mets. 

February 25, 2016 - bone density test done. Within normal limits. 

February 26, 2016 - met with geneticist and genetics counselor. Discussed risks of this being genetic. Blood test drawn to see if I carry BRACA gene. 

March 9, 2016 - results are in from BRACA testing. I'm negative... I can move forward with surgery. Surgery scheduled for lumpectomy and sentinel node biopsy. 

March 12 and 13, 2016 - We are in Washington DC for an audition for Rebekah, got to go to the National Zoo and meet up with a friend from forever who is in the US Navy and works for JAG. 

March 14, 2016 - surgery. Lumpectomy and sentinel node biopsy. Initial reports is that nodes are negative. Home that same day 

March 23, 2016 - post op appt. My surgeon tells me we need to talk. Not good words... While initial reports were that the nodes were negative, they were wrong. There were four nodes tested, 3 were breast nodes, one was not. The breast nodes had cancer, the other did not. There was cancer in my lymph vessels and there were not two lumps, there were four in the section that she removed. So, I now MUST have a mastectomy and lymph node removal and the second breast is up to me. I say take it. I have now changed to stage IIB or stage IIIA. 

March 29, 2016 - surgery again. Double mastectomy and lymph node removal. I wake up in post op and tears flow down my face. I'm sad. I have no breasts. It hurts. It really hurts, emotionally. 

April 3, 2016 - I go to Wright State for a bridal shower for my daughter. I am embarrassed and humbled. I have no chest. I have three drains hanging from me. I don't feel like me. I'm tired and drained. Then, these beautiful young women that are my daughters friends, ask about me. Talk to me. Ask how I am. Get me things so that I don't have to get up. Humbling. 

April 5, 2016 - one drain removed. 

April 7, 2016 - two remaining drains removed. 

April 22, 2016 - my birthday. Never thought I would be thankful to have one. 

April 25, 2016 - see my surgeon. She wants me to stay off work for a couple weeks more, then only return half days for a month, then back to full time. 

May 3, 2016 - First chemo treatment. It went ok. The next few days are eh.... but just keep plugging on..... 

What WOULD have happened if I didn't have cancer...... 

January 22, 2016 - appointment with my family doc. Discuss my increasing depression. My meds are changed, mammogram is ordered. 

January 29, 2016 - Brad and I go to sleep, no lump anywhere... life is cool..... 

February 1, 2016 - mammogram completed. all is well. 

All of February 2016 - cold.... some sun.... valentines day... fun! joking around with co-workers. going to a concert for Rebekah at Wright State. 

March 2016 - Go to Washington DC, see the pandas and otters at the National Zoo. Brad gets to see gorillas. Rebekah goes to dance audition. We come home. Life is good! I got to see pandas and otters! Co-workers laugh because they didn't see me on the zoo cam sneaking into the panda enclosure. 

April 3, 2016 - I go to bridal shower for Rebekah at Wright State, but I go early. I help her best friend set everything up. Her future mother in law and I laugh and help out. It was so much fun! I enjoy being the mother of the bride and watching and helping, like I should. I'm not sitting in a chair and am not embarrassed by my figure (or lack there-of). 

April 22, 2016 - My birthday! I am feeling so much better since my change of meds! I have a great birthday with my family! We go out to eat... laugh, joke about things. Talk about how things are changing with the wedding coming... Also laugh because our weight loss contest ends Monday... probably not gonna win, but it was fun! 

May 5, 2016 - laugh with coworkers about Cinco de Mayo and what everyone's plans are. Go home, eat tacos with avocado... mmmmm joke with the family.... 

So, there you are.... what I WISH it was, but what it really is. More to come.... I feel like everyone tells me how brave I am. I'm not brave. I don't feel like the warrior they say I am... I'm just me. But, I'm doing what I have to do. I have a husband that I want to harrass for years to come. I have a son and two grandsons that I love and want to watch mature and grow. I have a daughter getting married, I want to see that. I want to see the grandchildren I have never met... There is so much.... but how do I describe any of it? I thought of a song from 1984 by Twila Paris... The Warrior is a Child.... "They don't know, that I go running home when I fall down. They don't know who picks me up when no one is around. I drop my sword and cry for just awhile... cause deep inside this armor, the warrior is child." 
  
https://www.youtube.com/watch?v=dkQhGSBXsHI

first chemo treatment

     Well, I had my first chemo treatment. I thought it went well. I felt fine during and that night. The next day, I had horrible heartburn. I was eating tums like they were going out of style. Still was not sleeping well. Periodic nausea. So, I ate ginger snaps and ginger candy. That helped. Smalls bits of food, not really meals. By the second day post chemo, I was done. I called the oncologist and told them about my heartburn, insomnia and mentioned that my cheeks were very red and warm. No fever. I got a return call, doc put me on meds for the heartburn, meds for insomnia and the cheeks are from the steriods. Ok.... so, off Rebekah goes to the pharmacy to pick up my meds... God love her! 

     Here on post chemo day three, glad to say they helped. I remember how we used to give protonix in the hospital, on an empty stomach 30 minutes before meals. So, I got up this morning and took that without anything else... waited a half an hour and then had a smoothie made with coconut water. Much better today. Still a lot of belching. But that's better than the burn I was having. It was awful. 

     Yesterday I had little appetite and was just bleh... tired and bleh... today more energy, more appetite. Feeling better. Never normal, but what is normal? 

     One odd thing happened during chemo, the second drug, Cytoxan. My face started feeling numb on the left side. They called the doctor in. He checked me over. They took my vitals (which were fine). He said to take some benedryl and watch it.... well, today it is back. Off and on. I also felt short of breath after my shower today. I am blaming the cytoxan. Hate to be that way, but awfully coincidental. The shortness of breath improved with some rest, but ... A friend going thru chemo for breast cancer that has asthma has a lot of respiratory issues and they took her off the cytoxan and it improved. You had better believe I am telling them this again before I go to chemo next time. I am not losing feeling in my face and having respiratory issues. 

     I go back to work Monday, May 9th... half days only. But back to work. Anxious about that. Hope it goes well. Hope I do well. My next chemo is May 17. On May 10 we have a dinner at church for women. I am doing a "cardboard testimony" there. It should be good. I hope I can show God's love and be worthy of being a testimony.