Remission Life

You made it. You heard those wonderful words that every cancer patient longs to hear. You are in remission. You passed the biggest test you will probably ever take; and beat the big demon cancer. Now it’s time to celebrate! Hair is coming back, you are starting to feel better and your new normal is coming together. Of course you are still tied to the Doctor with follow-ups, lab work and scans but you are starting to taste the freedom.

The first month after I was told I was in remission was awesome. The chemo fog was lifting and I was really enjoying the rest of my maternity leave. Then the second month came and with that my looming scan was on the horizon. I am not going to lie scan day is awful for me. I am nervous and pretty much feel like I am going to vomit until I get those awesome words. You know the ones that your scan and lab work is good and you are free for another three months.

After two years of remission (yay!) I received another dose of awesomeness. I have now graduated into a six month scan schedule. As long as I am a good girl and get my yearly physical I can do my scans every six months instead of every three. Nice on the anxiety level and the pocket-book.

I may have played down the anxiety regarding scan time. The anxiety starts rearing its ugly head about a month and a half before scan day. There is a lot of me refusing to go to any appointments and coming up with tons of reasons I have cancer again. If you have ever had cancer you know what I am talking about. Your finger can hurt and you think this is it; my cancer is back. In the end I always end up going. Of course I am trying to read the faces of the lab tech and radiology techs. (Like the lab tech knows if my cancer is back by the looks of my blood when it is still in the tube) I am always sure that the radiology tech has seen cancer all over in my body by the look on their face. They are probably just creeped out by me looking at them all of the time but whatever. Then after a couple of hours that creep by like a turtle on its way into town; it is Doctor time. You just know your fate; the cancer is back. Then they come in the room and tell you everything is clear and you wish you would have brought a bottle of champagne and those streamers to celebrate.

Remission is something to celebrate. Not just after a clear scan but everyday. You fought the good fight and you won. You may not know it but us survivors are an example for our fellow fighters still sitting in that recliner getting chemo. They need to be lifted up just like you may have during treatment. So let them know; after surgeries, procedures, chemo, radiation and tons of testing you did it! Now you can call yourself a survivor and they can too. Remission life does have its ups and downs with scary testing and side effects from treatment but you need to enjoy it. Keep fighting through the anxiety and side effects just like you did during treatment. Get out and live life for yourself, your family and everyone out there still fighting. Really no one loses to cancer. Even when angels are taken from us they did not lose. They fought as hard as they could to stay and that is a great accomplishment. Now, if you are in remission enjoy the remission life and get out and live it. Do something you may not have done before treatment or something you have always wanted to do. I feel like I was given a second chance at life and I am going to live it up and have some fun. I encourage everyone to enjoy the remission life 🙂

Why you need to go to the Doctor; even if it is scary

Today was one of the three most dreaded days for me during the year. It was my day to go and have a physical. Ugh. I hate going to the Doctor. Not because I dislike my Doctor or the staff I actually really like them a lot and they are former co-workers of mine. The reason I hate going to the Doctor is because I think I will be told the dreaded words again; “I am sorry I have to tell you this, you have cancer.” I am usually forced against my will to go to the Doctor three times a year. I have to see my Oncologist twice a year for a CT Scan, Lab work and an office visit. Then once a year to my Family Practice Physician for my physical.

It probably sounds silly that I have to be dragged into the Doctor kicking and screaming but it’s true. It usually creeps into my mind about a month before the appointment. Then the assumptions start. I come up with the darndest reasons as to why I have cancer again. After I start assuming then I start bugging those closest to me. “Feel my neck; I am sure there is a lump.” “Look at this spot on my leg that has been on there since I was born.” The list and demands goes on and on. After I have bothered everyone so much that they want to choke me it is appointment time.

Physicals are a little easier on me than scan day. Because during a physical they are probably not going to be looking inside of my body. (Unless they find something suspicious) In preparation for what I was sure would be one of my last days with hair; I spent an hour straightening it last night. Since I have been left with crazy curly hair (which I do like) it makes straightening a hot sweaty mess. After blow drying my bathroom is already a balmy 80 degrees. When you add a very hot straightening iron to that you might as well have a gallon of water and a cold compress on standby. After the hair prep it is on to life prep. Making bills out, cleaning and laundry. I always want to make sure I have my ducks in a row when I find out “the news”  Then it’s a Sprite treat to relax and off to bed.

Scan day is a whole different world. I know they are actually going to be looking inside of me and I am always sure that some type of cancer has developed. Plus I don’t get my coffee that morning and that makes for a foggy and crabby morning. After my scan and labs it is typically a four-hour wait until I get my results. Even though it is an excruciating wait I am lucky that I receive my results the same day. So I will take the four hours over a day or longer. I think another reason scan day is scary is because if I hear the dreaded words again depending on what that entails I could be starting treatment asap. At least after a physical I have a little time to prepare.

Even though these days are scary and stressful they are so worth it. The relief I feel after knowing I am okay is wonderful! I typically have a great day after learning I am good for another couple of months. One of my oncologists said to me “I don’t know why you worry so much; I told you the cancer is gone.” She is right. When we figured out what stage I was (stage 1b) after surgery they said I would be fine with the four rounds of chemo. They called my chemo an “insurance policy”  in case a small amount of cancer got into my blood that they weren’t able to detect. So yes going to the Doctor is totally worth it. Even if I do hear the dreaded words again I have to remind myself that early detection is the key. If you let things go and appointments pass you are really doing yourself a disservice. Get your physical every year. If you feel like something is going on with your body make an appointment. You know your body better than anyone so listen to your body. If you get blown off be persistent until you are satisfied with the answer you are given. You are your own advocate sometimes. If you are lucky enough to have a great Doctor stick with them. Even if you’re a ball of nerves like me and drive your family and friends nuts just remember that they are pretty much forced to listen to you and comply with your demands. Go to the Doctor and get yourself checked; even if it scares you.

You don’t have to give up hope

During the struggles of life it is hard not to give up hope. It is actually very easy to give up; but don’t. Please don’t give up hope. Through all of the infertility, loss and cancer I wanted to give up so many times but I didn’t. And now I get to watch my daughter grow up; which at one time I didn’t think it would be possible.

Today as I gave my daughter a bath watching the foam letters float around; all I could think about was how four years ago I really didn’t think this would be possible. All of the little things that I get to do with her that would have never happened if I would have given up hope.

After we lost our son there was still hope. Hope for peace and hope for another baby. We were lucky to receive both.

When I think back to those dark days of chemo there was hope. Hope to be cured and hope to never have to go through it again. So far it has come true.

Whether you hope, wish, pray or do all three keep on. Whatever anyone tells you keep hoping for the best possible outcome. You may be surprised how truly wonderful that outcome can be 🙂

Edited Blog pic

Calm?!?!?

To me calm is a pretty tall order sometimes. I am a naturally anxious person but since losing my son and being diagnosed with cancer sometimes it is near impossible. Through it all there are some things that I have learned help me take my mind off of things and I would love to share them with you. I know how it feels to be a ball of nerves and you feel like there is nothing you can do but sit in a pool of worry. Even if you have never been diagnosed with something awful, etc. I know anxiety can be very real so feel free to read 🙂

I have worried about some of the silliest things. Especially since being diagnosed with cancer. Every bump, bruise or weird happening with my body I just know I have some kind of cancer. I have had lung, breast and many others in my mind of course. Here are some examples of my “medical findings” One night I was just going about my business brushing my teeth when bam I had blood in my spit. Automatically I knew I had lung cancer. So for about a week I walked around thinking I had this horrible disease. I finally looked it up on the internet and the only thing that didn’t come up was lung cancer. Well, lo and behold I actually had a canker sore in my mouth and that was the source of the bleeding. A week of my life I can’t get back because of a canker sore. Another silly story is when I was convinced I had breast cancer. I had started working out when my chest became so sore. Instead of thinking the obvious I immediately convinced myself I had breast cancer. After agonizing for about a week husband finally said “Do you think just maybe it might be because you are working out and you have been sleeping with Avery on the couch a lot?” At the same time Avery was getting quite a few teeth and the only way I could get her to sleep was having her lay on my chest. Then I would fall asleep and we would lay like that for a while. I know both of these stories sound silly; but to someone who has had a life threatening diagnosis it is not. I put it to people like this “I never thought I would get diagnosed with cancer in the first place; so why wouldn’t I be scared about every bump or bruise?”  Then when you add in these frightening lab tests and scans you might as well put a nervous nelly name tag on me. I am so thrilled and lucky to say that I only have my big scan and lab day twice a year now 😀 It was wonderful news to receive when I was told I “graduated” to every six months. It was a great feeling until the other day. All of a sudden the thought of my scan started creeping in. Even though I have until March when I go again it’s already starting. Honestly it gets harder and harder to go to every appointment. I had myself convinced that I was going to quit seeing my oncologist because I couldn’t take the appointments anymore. I know stupid idea. Well, husband convinced me to keep going. Some of it was that I did not feel comfortable with my new oncologist because mine left and I really was sick of dealing with the billing department at the clinic I was going to. Let’s just say over the span of four years they over billed us (a lot) and then still called us harassing us for money. So I switched to a different clinic and I love my new oncologist and the clinic I go to! It does make the appointments easier.

When I was pregnant with both my children I wanted to wrap myself in bubble wrap but after losing my son I wanted to put myself on bed rest with my daughter. I did learn life was much easier to deal with if I actually lived it and enjoyed it. It is hard to enjoy your pregnancy after a loss but you have to try. It isn’t fair to you or your baby to not enjoy it. Once you get into the groove of getting ready for that new bundle of awesomeness it does get better 🙂

You are probably wondering when I am going to start chatting about the calm side of this post. Well you are in luck 😉 Some of these tips may not work for you but you are welcome to try any of them. If there is something that you do that works really well for you let me know I am always up for trying new things!

  • Try new things! I started exercising and I love it! You don’t have to enter a marathon but a walk (especially in nature) does wonders.
  • Music, I can’t say enough about it. I pop in those ear buds or turn on my iHome and the stress and worry melts away. Dancing silly with your kids or pets is a must!
  • Pets! If you have a fur ball that you call your own go grab a snuggle. Even though my fur ball can be a meanie at times he has always been there for me.
  • Indulge in a little t.v. This may be a bad habit but I would rather do this then be nervous all day. If I get into a really good show whether it be serious or funny I feel better.
  • Read, Read, Read!! Don’t read medical journals or anything. (Unless they make you feel better) Get into a good book and stay in that world for a little while.
  • Pick up the phone! Call your bestie, parents, neighbor, sibling or whoever will answer. You need people to help keep your mind from going or keep going to that negative place. If it’s family or a besite they are pretty much legally obligated to talk to you so never feel bad for calling them 😉
  • I know I said this before but exercising helps me so much. Whether it be a walk, hike or big workout there has never been a time where I still felt icky or worse after a workout. I promise you will feel better! Better yet grab one of those people who are legally obligated to talk to you and drag em with ya.
  • Get out of the house! I know how it is you really don’t want to be around people when you are anxious but even going for a drive can help.
  • Do some housework. Once I dive into this mess that I call a home the anxiety floats away in my dust pan or cleaning cloths.
  • Don’t be afraid to seek help. If you feel that it is totally out of control and you really can’t handle the anxiety call your Doctor and set up an appointment. Seeing a counselor can do wonders and it is nothing to be embarrassed about. My way of thinking is if someone wants to walk a mile in my shoes and think they won’t feel any worry be my guest. There are many avenues you can travel to get the help that you need.

I know I am my own worst enemy when it comes to this. My brain can really do a number on me so if I can find ways to help me through I know you can too.

2014-10-09 001 012

Chemo aka rat poison

Chemo sucks. I hated it and still have very strong feelings of dislike for it. I am not even sure where to start on the long list of reasons why it sucks. Yes it did help save my life, I will give it that but that’s it. I am 100% positive that anyone that has had chemo or knows someone who has will agree with me. A little history on my chemo; my “cocktail” consisted of  Cisplatin and Etoposide. I had chemo every three weeks, three times a week for four months. The day after chemo I would go back and get a shot of Pegfilgrastim which helps your body make more white blood cells.

First reason I hate it is because you feel like dog shit. Sorry for the swearing but chemo deserves a swear word. It feels like you have the flu x 100 all of the time. After a couple of days out from a round of chemo you start to feel a smidgen better but then it’s usually time for more. I also had a lot of soreness. Everything hurt from my limbs to what little hair I had on the top of my head. Yes my hair hurt, well I guess it was more like my scalp but whatever. One of the nurses compared it to having fibromyalgia. Those of you that have that I totally feel for you. It sucks. I was pretty much forced to pretend I felt okay because I had a little that needed attention and to be fed every three hours. But there was one day that I literally could not get off of the couch. Thank God my husband was home because I don’t know what I would have done without him that day.  I was supposed to go and get my shot for my white blood cell count but we were in the midst of a snow storm so I had to reschedule. It was the day after my third round of chemo so I was feeling crappy anyway.  I am not even sure how long I slept that day I just laid on the couch in and out of consciousness. I remember one of the times I did get up and it literally hurt to walk to the bathroom. I am still a little sore and depending on the weather I still have some bad days but I am so glad that I am not in as much pain as I was during chemo.

Another little wonderful thing that happened to me was I did have some hearing loss. I can thank the Cisplatin for that. I started having some ringing in my ears during chemo and that is a side effect of Cisplatin. I did get the amount of Cisplatin I was receiving reduced by 10% and it took care of the ringing. The hearing loss is not severe at all I mostly have a problem hearing someone talking to me if we are in a large crowd. (Which probably happens to a lot of people) It is kind of comical to listen to my husband and I when we go to a restaurant because he also has a hard time hearing in crowds.

The last reason is the most obvious. The hair loss. I know I will probably sound vain but that was the hardest part. I tear up thinking about it even now. My hair was kinda my “thing” I am not a size two and I don’t have a gorgeous face but my hair kicked some serious butt. It was long, thick and beautiful. I could curl it and straighten it and it looked good both ways. People would always say to me “People pay a lot of money to have their hair look like yours.” When those luscious locks started to fall out I had a small mental breakdown. I think some of it was it kind of cemented to me that yes, I did have cancer. By looking at me before my hair loss people probably just thought I was sick with the flu or something. But now everyone would now. They do make some great wigs but I couldn’t afford them. I did receive a free wig from the American Cancer Society and my dad bought me one for Christmas. Some people told me I should just shave my head right away so I wouldn’t have to go through losing it. I wish I would have listened. When you have cancer you lose control of a lot of things. Your whole life is based around surgeries, chemo and other treatment. Your hair falls out, your body hurts and you feel like crap. So to have some control and be in the driver’s seat again is a good feeling. When my hair started to fall out it ended up getting tangled in my other hair so I looked like I had a rat’s nest on my head. So one day I decided I was going to cut it shorter and donate it. So I did and then two days later my husband shaved my head. I will never forget that night. I went to take a shower and I could barely wash my hair. There was just gobs and gobs of hair all over the shower. After a cry fest in the shower I decided I had enough; I wanted to be in control. I got out of the shower and told my husband tonight was the night. He kept asking me if I was sure because he knew how much I loved my hair. I told him I was more than sure because I knew I could not have another shower like that again. So the shaving began. First I had to see what I would look like with bangs. I had never had them before and I discovered why that night. Then I gave myself a mullet. I kinda wish I would have taken pictures of my different hairstyles 😉 Then it was shaving time. My husband shaved my head for me and finally I was in control. (Well technically he was in the driver’s seat cause he had the clippers) I was so glad I did it! No more hair falling out. A couple of days later he shaved his own head and so did my dad. I wish we would have taken a picture together.

After my hair was gone I got to enter the wide world of hats, scarves and wigs. Kind of a cool world; there are so many different colors and styles. I also realized something; I was okay with looking like a cancer patient. My hair was gone and there was nothing I could do about it but that was okay because I was still here; ready to raise my daughter and spend time with my friends and family. To all of the people out there that have lost their hair due to cancer or something else I admire each and every one of you. It is hard to step outside with no hair everyday and walk around on this earth. I wish I would have done it more. Looking back I wish I would have taken more pictures and just plain went out of my house without a wig. If you are in the process of losing your hair or you have lost it don’t be embarrassed.  You are beautiful and if you have the guts to show off that beautiful bald head you are awesome in my book!!

SAM_0273
One of my wigs.
SAM_0384
Hair starting to come back 🙂
SAM_0179
The only pic I can find with my bald head. As you can see what I did have left was gray.

I am sorry to have to tell you this, you have Cancer

Today marks two years since I found out I had Cancer. My official diagnosis is Large Cell NeuroEndocrine Carcinoma of the Cervix. At the time of my diagnosis I was 30 weeks pregnant with my daughter. I had went in the day before because I had some spotting and the Doctor I saw decided to do an exam and he had found a polyp.  I had never had an abnormal pap in my life, no polyps nothing. So I was very shocked to say the least. I honestly can’t remember bits and pieces of the conversation. I was at work when he called to tell me the news. He didn’t have much information for me only that this type of cancer was very aggressive and I was scheduled to see the OB/GYN Oncologist that next Tuesday. (He had called me late on a Friday afternoon) He also told me that I would be having my daughter in two weeks and she would be spending some time in the NICU. Oh and I can’t forget that he also said I would be having a radical hysterectomy.  The Nurse Practitioner that I worked with at the time told me I was breathing really heavy on the phone and by what I was asking she knew something was very wrong. At the time I was working for her and a surgeon in a private office at the front desk. So after I hung up the phone I really didn’t know what to do next. Call my husband, call my parents, call my friends, cry, scream, I just didn’t have a clue. I immediately got mad, I just kept thinking how is this fair, I literally just lost my son almost a year to the date I found out I had cancer. Now I might not live to raise my daughter and I won’t be able to have any more children after this. I just kept thinking this is not fair at all, what did I do to deserve this. So after crying for a little while I went home and told my husband the news. Then I started calling friends and family.

So after a long weekend Tuesday finally arrived. I saw the OB/GYN oncologist and we decided to go ahead and do a CT Scan of my lungs, abdomen and pelvis. We wanted to know if the cancer had spread and with the type I had those are the places it spreads to or starts. Normally I wouldn’t want to do a CT Scan when I was pregnant but we wanted to know if we could wait the two weeks to have our daughter or if the cancer had spread and we had to have her now. The next day I was scheduled to see the OB/GYN Oncologist again, my OB, the Perinatologist (high risk ob), Oncologist, a NICU Doctor and a NP for my pre-op. It was a long day to say the least. But we did get some good news, the results of my CT Scan showed that the cancer had not spread. Actually the scan didn’t pick up anything. So we were happy about that. We learned a lot of things about what would happen in the next two weeks. I learned that you do not have to keep the first Oncologist you see. She was horrible. After learning my CT was good we were is pretty good spirits then we saw her. I asked her what the survival rate was with my type of cancer. She looked at me with a blank stare and said “Some people survive.” That was it; no you had a good CT, you caught it early, NOTHING. Then she proceeds to tell me to go online and read a story about a girl who found out she had my type of cancer when she was six weeks postpartum. After she tells me that she keeps scrolling down the page on her computer and says “Oh never mind don’t read that article.” Ugh she was Horrible!! Did I say that already? Well she deserves two horrible s.  I can happily say that was the first and last time I saw her.

We also found out lots of info on our daughter. She would be arriving eight weeks early and she would be going straight to the NICU after she was delivered. She would come by c-section and I would be awake for that. Immediately after I had her I would be put under for my hysterectomy. We were told that she may have breathing problems, which she did have some. She didn’t get the whole, suck, swallow breathe thing  when she was eating. I was given shots so her lungs would be more developed when she was born. I had another ultrasound of her so they could see about what size she would be when she came. She was big for how early she was. Maybe it was all of the junk food 🙂

I am going to do a little fast-forwarding just because this is getting reallly long. I was lucky enough to have great friends and family that threw a baby shower for me at my house. I originally wasn’t going to have one because I had just had one a year before for my son but they insisted. It was a great night and I got tons of great gifts!

October 16, 2012 my daughter’s Birthday!!!! We were up at 4:30 that morning to be at the hospital by 6:00 a.m. (We live a good 40 minutes from the hospital I was having my daughter.) At 8:27 a.m. Avery Lee was born ❤ She was 5 pounds 4 ounces 🙂 I got to hear her cry and see her beautiful little face and then it was lights out for me.

After I woke up they wheeled me and my bed to the NICU and we got to hold Avery’s hands and see her 🙂 After a short visit I was taken to my room where I would spend the next four days. We were able to go and visit Avery over my hospital stay and it was wonderful 🙂 She was doing very well except for her Bradycardia’s. She would stop breathing every once in a while and then when she started taking a bottle she would stop breathing when she was eating. She is a fighter and full of energy and I think that is why she did so well 🙂

So after four days in the hospital I was able to go home for about 3o min to pack some more things because we were given the opportunity to stay at the Hope Lodge. Some of the clinic staff in the OB department set up for my husband and I to stay at the Hope Lodge while our daughter was in the NICU. They are awesome, wonderful people 🙂 They did it without us knowing and came and visited us while I was in the hospital to tell us the good news! So now we wouldn’t have to do so much driving. The Hope Lodge is free to cancer patients while they are receiving treatment. It is a truly wonderful place 🙂

I started chemo two weeks after my daughter was born. I had a new oncologist and she was wonderful 🙂 I had four rounds of chemo and was declared cancer free in February 2013. I will talk more about the wonderful adventures of chemo later 😉

I was told many times by my Doctors that my daughter saved my life. Which is true but I honestly believe both of my children saved my life 🙂 I of course will not be telling her she saved my life until she is an adult so she doesn’t try to use it as a negotiating tool 😉 Now everyone could say I would go in if I was bleeding but you might not. If I wouldn’t have been pregnant I probably would have thought “Ugh I have my period again?!?!” Then I would have moved on and I probably wouldn’t be here today. So a little advice: go to the Doctor if you have something abnormal happening. DON’T ignore it!! Live life to the fullest everyday!! I know that is easier said than done but it really is just the little things in life. You don’t have to go skydiving everyday to live life 🙂 Listen to your gut. If you have a “feeling” probably go with it. It could save your life 🙂

SAM_0849
Here she is my lifesaver ❤

Exercise

So, if you would have told me a year ago that I would be blogging I would have told you that you are crazy. If you would have said I would be exercising and loving it I would have laughed and said shut your little mouth 😉 But now both are true. So after having two babies in two years, being on bed rest and chemo I gained some weight. Okay a lot of weight. When I was pregnant I ate whatever I wanted. None of it was good for me. I was the girl stuffing her face in any given drive-thru. I didn’t really discriminate. So about this time last year I decided to try and lose weight. I am incredibly cheap and looking at all of those clothes in my closet that were too small and not wanting to buy all new clothes motivated me. Plus I was sick of feeling sluggish and well, fat. So it began, I started by going to my dad’s house and working out. He has a weight machine and an elliptical. I started slow but I can now say I have lost 10 pounds to date which may not seem like a lot for exercising for a year but I fought for every little pound. Once spring and summer FINALLY came to Wisconsin we started hiking and walking outside. I even run a little. Very little but I do try. I usually work out with my dad and he has been by “personal trainer” He really does motivate me. It’s kinda hard to say no when he calls or just comes over 😉 Word of advice if you are unsure that you want to work out don’t have a parent be your workout buddy. They will drag you against your will because you are their child and they can. But that is exactly what I need 🙂 I actually do feel better too. Of course I still have “chemo brain” and feel like I could sleep for 20 hours a day but it is getting better. I have more energy and I am happy to report my clothes do fit a little better. My advice to anyone that wants to start exercising but is too scared or embarrassed, start slow and they do have this wonderful little website called Pinterest that provides you with tons of workouts that you can do in the privacy of your own home.   So now that we are in a beautiful new season, fall I have been able to take some pictures on some of my hikes and walks. Here they are hope you enjoy them 🙂  2014-09-20 001 001 2014-09-20 001 008 2014-09-23 001 007 2014-09-23 001 008