An Update and How can I help?

I have been wanting to write a blog post for a few weeks but unfortunately my right arm has lacked strength and so I just haven't picked it up. So I have posted tid bits on facebook but really wanted to write more.  Its hard to believe that its been 6 and a half weeks since my initial mastectomy.  I have to say that I had high expectations of what I would be able to do at this point, many people are fully released to go on with life and start radiation if that is part of their treatment plan.  Instead I am still recovering after having to have a 2nd surgery less than 2 weeks ago to remove necrosis and infected areas.  This surgery meant that all my original incisions were recut through the issues all cut out and my skin stretched to restitch in hopes that when they connected my skin this time the blood flow would be better and no additional issues would arise.  So as I sit writing this I am still sore, I still have stitches, I still despise sneezing because the pain is unbearable but I finally feel like I am starting to heal.  I have slept a lot, taken plenty of meds and really tried to rest which if you know me that is hard but I have realized I need to heal SOON.  I need to be able to resume simple activities that are still hard to do some days.

I have tried to express how I have honestly felt during this battle because I think it's important for my friends to know that and a few weeks ago as I was encountering complications, getting frustrated over my lack of recovery and just felt like every doctors visit brought on a new issue for me I really had some emotional breakdowns.  Until this point I hadn't really had any major issues with dealing with my personal issues and medical issues.  Because of the delays with my recovery I also am taking some additional meds that affect my moods and I just had enough.  I hadn't lost my faith but I had several days when I wasn't sure if I would laugh or cry.  Not only was I emotionally a mess I was feeling down with the weight I had gained from meds and living in yoga pants and tshirts all summer I just had stopped caring.  My eyebrows and lashes were returning but my hair has been slow to want the return so its not quite at a point that I am confident to just go hat or wig less yet.

To top it off for the first time since my cancer diagnosis I was seeing it really affect my kids and this has been by far the hardest thing I have dealt with, The second surgery did not help matters where Hannah seemed to take things well and continue to think she was my nurse and needed to take care of everything my boys were starting to get emotional and still are having some rough days dealing with the fact that I have not been my usual active person and they just don't understand.  For the first time I felt like I was failing, forgetting things, not being able to keep up with what they were doing in school and with all my stitches they just couldn't snuggle with me.  They have been sad and very needy for their mom and I have woke up many nights and cried over how this horrible disease has hurt not only me but my kids it took their summer vacation since I had chemo, I have guilt over what I can or cant attend at school then I think ahead to my next surgery a hysterectomy that will hopefully be done by a robotic version on December 22nd so that I only spend 2 days in the hospital, but I have to be aware with my situation if they can not remove everything needed that way I will endure a traditional abdominal cut and have to spend Christmas in the hospital then I think to myself how they have to endure another school break with their mom recovering yet again from something and unable to do things.

So this week I have still had some ups and downs and most of them are really just because my heart is breaking for my kids and some days its just because its hard to be alone and facing so many hard decisions and procedures.  Medically I feel better than I have in weeks despite the fact I spend 2-4 days a week at appointments and the time I am not there well I have spent napping more than often not something I would normally do.

During all of this so many people have helped in so many ways and I know before my cancer I never knew what to say or how to help someone I mean I will be honest if you say to me call me if you need help with anything I probably will never call you.  That's just me I am used to doing things myself whether I should or not.  I recently explained to a few close friends whom said that people want to help but I wont let them that it is not that I wont let them its just if someone wants to help me they have to say I am stopping by Tuesday at 10 am and would like to sit and spend time with you and help with anything you need help with.

So for those of you wondering how you can help others in similar situations here are some things people have done or just ways to approach helping. 

1.  Pray for the person but not only the person, their caregiver and their children. I am so thankful that despite all of this I have my faith I just don't know how someone that doesn't know God gets through some of the struggles I have encountered this year.

2.  My hardest thing was to let people clean my home - seriously who wants to scrub someone elses toilets but a group of ladies sent me a text and said they would be at my home at a certain time and to have a list of items that needed to be done,  The best thing was that I had an appointment so they came in and did things while I was gone because if you are an OCD freak like me its just impossible to sit and let others to something like this.  But, I am glad I let these special ladies do this for me.

3. Food, I hate putting people out and meals are hard but they are such a blessing.  The first few weeks people brought meals every day or so - one suggestion is put your meals in containers that don't need to be returned.  I also tried to make a list of what my kids liked and did not but I wastnt worried about me for meals because honestly I wasn't always feeling well.  Then at the end of this a friend dropped off several sets of frozen meals so as I was able to get up more but not recovered enough I had easy meals that just needed to be warmed and served. Another thing that some amazing ladies did for my kids was they gathered easy breakfast items for them to grab to eat so when I was having a rough morning my kids could grab something easy, they were simple things pop tarts, mini muffin, etc but this was a HUGE help since I take pain meds mainly at nightwaking up in the morning is rougher.

4.  Cards - I can say there are a few individuals that have sent me a card every week since my diagnosis.  In the beginning of your sickness you get lots of cards but as the weeks and months go by they subside and its during that time you sometimes need the cards the most.  I have saved every card I have received sometimes I just pull them out and read through them for encouragement.  Also consider sending a caregiver or children cards.  I never thought about this until recently when Hannah was taking over this mother like role and so many responsibilities and so some special ladies sent her cards and even a few gifts to let her know how proud they were of how she was helping.  I can say she has felt so special that people have thought of her.  I even think my boys would love some cards.

5.  Gifts - I have rcvd so many gifts during these past few months from pizza gift cards to order pizza on a night when I am too tired of cooking (one thing to think of when doing this for a friend is what places deliver to a person;s home).  A few individuals have given me gift cards to food places my kids love so on days when I felt well I could take them out for a meal at a place they love this has been such a blessing for them because sitting and having dinner at a special place with their mom is huge.  Other gifts have been my favorite candy, books, flowers, pajamas for during my recovery and so many other things.  I have also had an individual give me a gas card I can say this is a huge gift for someone with medical issues, it takes me a little over an hour to get to where my care is at.  Right now I travel there 2-4 times a week this is something that becomes a huge expense for people.  Cancer is not cheap, this year I had to pay over $14,000 in bills before my insurance covered things 100% and I still have to fight on expenses, there are also the special bras, the medical supplies and more that don't get covered by insurances like mine and then hats and wigs.  A huge blessing was individuals helping with my hats and wig these items add up tremendously and when I no longer need these items I hope to bless a special person with some of these because I truly believe in returning the blessings I have rcvd.

6.  Rides... I don't like to ask for them but offering to drive a friend to an appointment or just to keep them company for the drive they make is also great. If they have kids offering to drop/pick up kids this has been huge because it has allowed me longer lengths of time to rest or saved me when appts get delayed.

7.  Encouragaement - with my downs recently friends have had me go to breakfast with them or shopping for some new clothes to make me feel better, just a text some days goes a long way. Just a visit and a talk can make a world of difference.

8.  Pictures - with so many appts I have missed a lot of time with my kids and the one thing I am so grateful for is those that realize and see I am not at events and take pictures of my kids and text them or email them to me I cant even describe in words what this means to me.  I have always been there for everything and now I am rarely able to attend anything and it saddens me more than anything because my kids miss having me at events but I have had to put appointments and treatment first and before them on many occasions. 

So no matter what you do for your friend any little thing helps but sometimes you just have to step in and do what you think they need help with if you are dealing with someone like me that is used to taking care of everything themselves.

I am so grateful for the help its been huge I am hoping in the next week that I can get back to painting and creating because that gives me a peace my lymphedema therapist has been working on my right arm and I finally have some of my movement back and feel asthough I can go create something.  I know that once I can get back in to doing some creative stuff my spirits will rise but my evenings I am tired and I have felt that spending time with my kids has been the most important thing so we lay in my bed and watch shows or have 15 min of me and just one of them time to talk about their concerns and fears. 

Everyday I have a fear, the fear that with my genetic testing that my cancer will return no matter what I do, I am terrified of radiation, the machine, the laying there on your own while it sends beams at you scares me but I have to trust that if I do everything possible things will work out and that this year is just a year of my life that I am learning how to deal with struggles, how to rely on God and people more and how to show my kids that no matter what the odds are you can be strong and do great things.

I apologize for those days whe I write a post that is discouraging on facebook, the one thing I vowed was to stay positive during all of this but sometimes we need to get things out.  I am angry there are lots of things I am angry about but I am trying to realize I can't live my life being angry about things I cant change instead I need to live each day to the fullest because we are ot guaranteed tomorrow. 

This past 7 mths has been a long road and its far from being over I still have several procedures I have to endure over the next 6 mths and treatments and I know I will continue to have good and bad days I have found humor to be my way of helping me through all of this. As I close this post I ask that you continue to pray for me and my kids especially my boys whom emotionally have been struggling lately but pray for Hannah too she trys to take on everything and she is a kid too and that is not her place.  Pray that my slow recovery will start to speed up so I can be more of myself again.  There are friends around me experiencing far worse situations and pain than I am and so I have to learn to be more grateful for those little things.  But I ask that you understand that somedays are not good days - just a small comment might leave me balling and do not take offense to it - some of my meds unfortunately have that side effect with them but I have no choice and must take them.  I really try hard not to let my children see me emotional I don't want them to worry more and my boys are still unaware that I am dealing with so much more than just cancer in my life and that somedays its just hard to accept.

As always I appreciate every person and hope that in the future I can take my list of suggestions and help someone else in need.  I think daily how grateful I am for wonderful friends, incredible school staff and strangers that do so much tohelpme through this time. 

Then it all started..

The first week after my surgery I felt fine and the second week I did okay.  Then I had all my drains out and could drive so for the first time in a long time I decided to drive myself to appointments the hardest thing for me during this is asking for help or feeling like I am bothering someone.

So the first appointment I went to I think Carla actually came with me too I knew something wasn't looking right in all my stitching areas and I found out I had some necrosis developing my skin was turning black and basically some had died during the surgery the blood flow when sewn back together just didn't come back.  Of course as soon as the doctor says this my anxiety starts to kick in and I am wanting to know what we need to do about it - he explained that sometimes it requires going back to the OR and removing the areas that are issues.  Of course I had this happening on both sides I started to panic more surgery ... But he wanted to wait 2 weeks because there was so much swelling and other healing going on around the areas they needed to see if some areas would improve.  Then I had an appointment the next day with my lymphedema therapist, I haven't mentioned what my pathology reports came back as but in all I lost 19 lymph nodes - 16 on my right side where all the cancer was with 3 of them having cancer and one the cancer was protruding out of.  On that right side the chemo had shrunk my tumor to about half its size so it was just over 2 1/2 cm by something ... when removed however they also found cancer in the ducts this had not shown up on previous testing since it was smaller areas.  My left side came back clear however they removed 3 lymph nodes from that side to test and all was clear,  So as a result of losing s many lymph nodes on the right side I have experienced some issues with that arm, some swelling, movement issues and very very sore. 

At this first therapy appt I had only been in there 5 minutes and started balling - no idea why just was an emotional wreck.  Then she starts my therapy and feels a lump area under my arm and shoulder area... so she calls down to my oncologist and sent me down there right away to be checked.  Yet again I cried my eyes out to my NP oncologist - still not sure really why.  Then they sent me for an ultrasound and the lump could not really be confirmed as to what it was so my oncologist requested an MRI.  I cried the whole drive home all I could think about was this was cancer again and was I now after everything going to find out that my cancer had spread - where my kids going to have a mother a year from now and how would I answer my little Andrew who is 6 and had been asking me each evening if the doctors had cut out all of the cancer. 

The next day I had yet another appointment this one was a CT of my chest there are 3 nodes that they wanted to check they could just be left from a bout of bronchitis earlier in life but they could also be something else.  I had been an emotional mess all night and went to the appointment on my own and get to the CT room and start to cry thank goodness for the wonderful medical people at the facility I go to - I was worried about the results. 

For some reason this week really brought me down I did not want to talk to anyone and despite that fact that everyone may of thught I was okay I actually was spending most of my days crying.  It doesn't help that during all this you are on so many drugs that affect you and then unfortunately I have not gone through the change and so my hormones were raging. 

I am not sure why I spent hours crying, but I know during these 6 months I have kept it together I haven't really been angry or had any melt downs and apparently I needed to have some good crys I wasn't upset that I had lost most of my boobs but I do know I was starting to get depressed about the way I looked.  I had gained over 30 lbs on all the meds and steroids during treatment and I felt like none of my clothes fit I looked horrible and I just wanted to look normal again and feel normal.

To top it off I am not used to being stuck in bed and not doing everything for my kids and it was taking a toll.  The fact that Andrew needed hugs and his mom and I could barely be touched was breaking my heart.  I have a few weeks I have no idea what my kids did at school then to top it off I wanted to support Hannah and show how proud I was that she tried cross country so I was trying to go to meets and by the time the meet would be over and I was driving home I was in horrific pain but I would of never told her that because I felt I couldn't miss these events.

At home I couldn't clean, do laundry or anything and it was slowly making me angry and sad I even was a tad mean to a few friends because I just wanted to be left alone. 

I never realized I would have such a hard time post surgery that I would drop my child at school and cry as soon as I left the parking lot that I would be so mad over my home situation and feeling so alone despite having so many friends that have helped in so many ways but I did,  I am not depressed just having off days.  I am down to only crying 1-2 times a day from most of the day and I have realized that its okay to cry and release some of my frustrations however I do try and keep it private from my children. Its been 5 weeks and I am still frustrated because I am not healed and can't do all that I expected I could do at this point.  My Hannah even took me for a pedicure and paid for it - she felt I needed something to feel better.  She refused to hear no and to know she would do this just warms my heart she has been such a huge help she has helped to dress me when I cant get a shirt on, change banadages, help me with her brothers and so much more I find myself upset knowing she should not have to do all this but she wants to be my caretaker.

So currently I am waiting to find out what is going on with the complications with my skin healing that I will find out tomorrow another surgery will put me down another week as far as recoverty but at this point I should be so much further along the recovery point than I am.  I also feel exhausted looking at my calendar and all the appointments the driving and time to get to them all is exhausting and I am to the point that I would rather drive myself because people have lives and they have done so much for me that I hate asking anyone to do anything more.

As I write this the thing that brings me to tears the most is how so many people have stepped in to help me or with my kids - the meals, the rides, the gifts, the cards and even cleaning my home its just been incredible and I can never thank people enough for the things they have helped me with. I have had a hard time allowing others to help me but realized that despite what I think I am not super woman and I have no choice to allow others to help. 

Thankfully my lump is not cancer, God is good and answered prayers I know he will get me through this tougher time and that hopefully I will start to recover and these issues will resolve,  Because of these issues I wont start radiation until later than we originally expected and my hysterectomy is scheduled for December 22nd I will have to spend 1-2 days in the hospital but will be home for Christmas.  I hate to say but I cant wait until this year is over I just feel like next year has to be so much easier. 

The Surgery Day (August 29th, 2016)

Tomorrow it has been 5 weeks since my double mastectomy I haven't really posted many blog posts just little tid bits of updates on facebook.  I have wanted to update more on the good and bad and in between but I will be honest my recovery has been ten times tougher than I could of ever imagined and so when I find myself laying down I have generally taken meds and fall asleep within ten minutes.

So my post might ramble on a little but I have several things I wanted to talk about in this post and we will see how long I can write before the words start to make less sense (took my nightly heavy meds).  One of the reasons I started this blog was to talk about my feelings but also to talk about those things with cancer that no one wants to ask about or talk about. 

Before my surgery, many people had said you did so well through chemo that surgery will be a breeze.  I think of this statement daily because there is no comparison at all between chemo treatments and this surgery.  Don't worry if you said this to me you wouldn't know but chemo was different yes I had bad days but I was able to just march through them with the surgery my bad days are generally painful and I can't just march through them instead I have to take meds and sleep/rest.

The day of my surgery I had a peace about it my only fear was a 4 hour surgery in which I would have a breathing tube and be placed on a ventilator when you are told that you start to freak a little. 

But, I really did very well all morning until 5 min prior to them taking me back then I had a little anxiety about everything fortunately the anestegelogist took care of this by giving me some good stuff that I don't even remember leaving the prep room.  As I woke up I am not sure that I felt like I was in horrible pain they place a very very tight compression bra on you so I didn't really see any bandages or such. For me also even though I lost all my original breast tissue I elected to have direct implants done this is not an option for everyone but I refused to have reconstruction done and multiple surgeries and honestly I had no problem being a much smaller size so I have found that people look at me weird when they see me not realizing that I do have a little something I am not flat and that is because I had small implants placed in at the time of the surgery.  This is a picture of the compression bra - hold your breathe its very fancy and don't all run out to get one! As you can tell someone had already decorated my eyebrows - I believe this was Hannah's art work, 

I just don't remember much about the recovery room but when it was time to move on to my regular room there was no lets roll your bed over it was you are getting up and in a wheel chair.  Getting up required that you use your stomach muscles more with the assistance of the nurse - I guess I should of focused on getting those in shape more. I can recall a few things once I was in my room for the night that was falling asleep on the toilet and at the sink and my nurse telling me to wake back up.  Once that was done and I was in bed and the compression things were on my legs to help avoid clots they let my visitors in.  Of course my best friends Carla had been there all day getting updates from doctors, texting or posting updates to people and just being my person like she has for the past 6 months.  Hannah also came to visit me I don't remember much of her visit she tells me she was feeding me cheez its and I was falling asleep she did not stay for long but she had wanted to see me and make sure I was okay.  Then my friend Crystal came and brought a diet coke for me let me tell you I have heard that watching me drink the soda was quite entertaining I apparently enjoyed the soda more than my usual daily drinks.  I also enjoyed my dinner after no food since the night before.

Then it was time to empty drains I had five drains attached to me through tubing into my chest that would drain extra fluid and stuff during the first days to weeks of my recovery.  These really look like a bunch of grenades in my opinion. You can see a few of them in one of the pictures above.


After this and eating some food Carla went and got me a twix and a strawberry shake - your bff always knows what you need even though I fell asleep in the midst of drinking the shake.  Prior to my surgery Carla and I thought it would be fun to draw funny eyebrows on every few hours to freak out my nurse.  Can you tell I was on some heavy drugs in this picture the things your friends do to you when you are out of it but my eyes tell you that I am not with it - that's okay one day I will be caring for my friends and the fun I will have with them and if you know me I am always up for entertainment.

Overnight I know I got up a bit the biggest issue was my itching and I was maxing out the Benadryl my poor skin doesn't do well with adhesive and all kinds of things. I actually got up around 3 am and walked for 15 minutes and the best thing was I had my own personal nurse can you believe that a nice suite and not having to share anything with any other patients, I did behave and only hit my call button a few times.

The next morning after the Docs checked me I was ready to go home its amazing to think I had a 4 hour surgery the day before.  We were able to get Dr. Curtis my plastic surgeon to pose for a picture however he said it was creepy and with my crazy eyebrows he felt like he was hanging with some of his uncles.

My nurse Shelly was AWESOME and I am sure she loved having me as a patient I mean who wouldn't but it was time to kick me out.

The ride home well have you ever been in a vehicle with Carla sometimes I have to put my passenger breaks on but she was fairly good to me ... we hit a few bumps on the way home that were painful but I think she wanted to just keep me on my toes.

Finally I was home - but I will say the first few days I wished I was back in the hospital with the beds you can move up right the hardest thing was to get in and out of bed.

Also once you are home those drains you have to empty and measure daily yourself I had some awesome friends take care of most of my bandages and drain work but look out my future doctor decided she needed to take charge of some of my care too,

Honestly the first few days I felt pretty good I rested but I also went out places with the assistance of friends driving and caring for me.  So I thought wow this is a piece of cake for the most part but then after 6 months of fighting this battle, chemo, surgery, the emotions came out and well I will be honest I had a few struggles that will be discussed in a separate post,


PS the spellcheck doesn't want to work on my blog so you will just have to bear with any spelling and  grammar issues and also realize that I took some meds too.