Thanksgiving blues

So Monday November 19th was my third round of chemo and so far this has been the worst yet.  

I knew that Thanksgiving was going to be difficult because I was having chemo that Monday but I was determined to push through it and give my family Thanksgiving even if I was eating something different.  So with that in mind I did the appropriate grocery shopping the week before and got stocked with the needed items.  

I had planned that I would make the pies on Tuesday (20th) and then the stuffing and sweet potatoes on Wednesday (21st).  Well, it didn't work out that way, Tuesday I was just plain exhausted so I rested and said I'd do it Wednesday.  I did manage to make the pies and stuffing on Wednesday with lots of help from David.  He ripped the bread for the stuffing and while I made the pie crusts, he made the pumpkin pie filling for the first time.  Fred helped after he got home with cutting the onions and celery for the stuffing and I put all the pieces together and we decided to handle the sweet potatoes on Thursday.  Thursday morning after I had a lovely sleep in, we put our plan into action.  Thanksgiving dinner time was good, we talked and laughed and teased each other.  The family assured me that the food was good and they ate it up as usual.  I am thankful for us being together and grateful that they helped me but what is the rest of the story?

.........While I enjoyed having time with my family and there were no arguments but laughter, fun, and love all around; this Thanksgiving was one of the hardest for me.


This was the first Thanksgiving without my dad.  I called my mom and she'd gone to a friends house but I couldn't talk to my dad.  I didn't realize until I wrote this how much I miss him, I am crying right now. Really.  



While I was making various dishes, I had to have others taste them to test the seasonings because my sense of taste and texture is soooo screwed up that I knew I couldn't taste test them because it wouldn't taste right to me at all.  I knew that this would be an issue this week, it always is; but this week has been worse than the previous chemo weeks.  Wednesday night I cried because I knew that very little of Thanksgiving dinner would taste right to me and I wouldn't be very hungry.  At that point I didn't want to cook at all and just give in and go to a restaurant but I have always cringed at the thought of doing that because to me it isn't how you "do" Thanksgiving and typically I don't like how many restaurants "do" Thanksgiving anyway.  I didn't realize how much the flavors of the food of Thanksgiving contributes to the holiday.  I mean I know the feast is the main part of Thanksgiving and having my family with me is Thanksgiving but not having anything taste right on my plate was such a let down.  One of my favorite things is cranberry sauce and it was horrid.  Since the flavors on my plate just were off, I focused on my family.  It wasn't until today that I realized how much of let down the holiday was due to the weird flavor/texture of the food.  

Fred put up most of the outside lights and hasn't fussed at me for not helping but I feel guilty anyway because it always something we do together but I mostly spent the remainder of the weekend sitting down and reading.  I did go out shopping on Friday with a girlfriend but we took it slow and it was dress shopping for both of us.  It was fun for a few hours to do something normal.  I have a company Christmas party to go to and she is going to a military ball.  

I really haven't wanted to be around my family.  I've just wanted to be left alone but a four year old doesn't allow you to do that very long.  This is how I know I am blue right now.  I really don't want to cook anymore either.  It just seems futile right now to cook food/dinner that I am going to have difficulty eating or that just isn't going to taste right but someone has to make dinner so I will continue to do so and eventually during this cycle my taste buds will allow me to eat again although they won't be "normal" until some time after my chemo is finished.   There have been others in my circle who have cooked for me and my family and I am grateful to them for doing that, it has been a great help.

To all those who have me and my family
helped in various ways 

I can deal with the hair loss and the weight loss but the food flavor/texture loss/differences are the hardest for me because I like food!  I know it is temporary but it is difficult nonetheless.  I miss enjoying the flavors of different foods.  I am looking forward to when food tastes "right" again

I still don't feel very good today for other reasons related to the chemo but I'm not gonna go into detail on those because I do balk at TMI that could gross others out.  


I got the results of the follow up ultrasound and the mass is smaller but the doc is going to have me do another MRI to get a more precise idea of how much smaller but at least the chemo is working.  It would stink to go through all this and have it not be affecting the darn thing at all.  

The nurse today when I made the observation that this time around seemed worse than the last 2 times did mention that the side affects of chemo can be cumulative.  I am not looking forward to this getting worse and harder but it seems that it is destined to go that way so at least I am forewarned.  I just wish I could close my eyes and have it all done with, ya know kinda get the benefits but blip past the icky parts.  Ah well, life doesn't work that way.

I am thankful for my family, friends, and community that supports me.  I am thankful for good health insurance that makes my treatment possible without being a massive financial burden upon my family.  I am thankful for my husband who loves me tenderly and is so patient during this time of our lives.  I am thankful to God for providing all of this to me.  All of these resources will get me through this especially God.

Angry

I. AM. ANGRY. AT. CANCER.

There I said it.

Cancer has taken so much from me and my family.

First of all it took my dad.  He was 66 years old,.... 66.  Way to damn early to die.  He suffered through some of the same things I am going through but his suffering was much worse than mine is.  He knew with his diagnosis he was going to die sooner than later.  He held out hope for the treatment to work longer than it did and I am glad it did give me 8 more months for him to live and to settle his affairs to ensure Mom was taken care of but still he is gone. This upcoming Holiday season is going to be hard.  I won't be telling him Happy Thanksgiving or Merry Christmas anymore.  There won't be birthday or anniversary wishes anymore.  Cancer took my Mother's husband, companion, friend, lover. Now, I worry even more about her than I did before when she was dealing with Dad and everything that came with the cancer treatment.  Cancer took my children's grandfather.  My eldest knew him at his best, my middle knew him but not as well. My youngest has seen him 3 times in his life, the first two times he has no memory of him and the third time was when he was ill with cancer.  My dad will forever be in his memory as the grandpa that was sick in Florida and then died.  Eventually his memory of his grandpa will be very fuzzy, my youngest will never really know his grandfather.  Last of my dad is gone, my DAD.  Is it possible to be half an orphan??  I still have a Mom but I no longer have a Dad on this earth.  Yes, I know that one day that I have the hope to see him again when Jesus comes but it still doesn't remove the reality that my dad, who should have had more years to live, is no longer here. There are tears in my eyes as I write this, I want to bawl but right this minute is not a good time.  There never really is a good time for grief.



Cancer has made in necessary for my mom to delay her grief in order to deal with her own cancer story and treatment.  A surgery then a re-admittance to the hospital 12 days later.  Dad wasn't there to support my Mom.  She finally mourned this time, she told me she cried for about 3 days off and on.  This journey hasn't been easy for her.  She also had to make the decision to put her dog down due to his declining health the day after her surgery.  So because of her cancer she didn't have the opportunity to say good bye to her four footed child.  My Mom would love to be able to come visit and help out here but she can't with her health needing to be taken care of.  

Cancer has been in my life for almost a year now.  December 20th, 2011 was when metastatic cancer was suspected in my Dad, Jan 2 2012 was when it was confirmed.  My mom was officially diagnosed the very day my Dad died.  I thought I'd just have to get through Mom's surgery and recovery and I would be done with cancer but it was not to be.  Sept 8th, 2012 is when I found the lump in my breast.  I knew what it was I really did yet I hoped it was something easy, benign or a cyst.  Alas, Sept 20th, 2012 I was officially diagnosed with cancer.  

My own cancer journey has made it difficult to mourn my Dad.  I have had to put many things in my life on hold such as school.  I miss school.  Yes, really. I miss the learning and the chance to learn something new in some classes, I miss the energy I get from it.  I haven't given up on that particular dream but it is just delayed.  I knew I needed to slow down for Kyle's sake to give him time to grow up and so I could spend more time with him but this wasn't the slow down I had in mind.  Even though I am not going to school, my cancer treatment still takes me away from him anyway sometimes it is physically due to my appointments.  Sometimes I am taken away because I don't have the energy to play with him like before.  I can play for a bit but I wear out so easily.  We went to Jump Planet the other day and I went down a slide 3 times and I was worn out where before I could play with him the whole session.  I have dealt with physical changes that continue to occur to me because of the treatment, I have learned I am still me even without my hair, I know without a doubt that I am cared for but golly what a way to go about having that knowledge confirmed.  I resent that my cancer requires treatment that causes me to not be able to care for my family the way I feel I should and have done so in the past.  I know that this time is to take care of myself and I will get back to things eventually but even though the cancer will be gone from my body I will still have cancer worries for the rest of my life.  I can have a recurrence of breast cancer many years down the road and I have to be ever vigilant of skin cancer because my odds of having skin cancer have increased because of my Dad's diagnosis.  I will end up cancer free eventually but I will never be able to shake the specter of cancer in my life, there will always be a nugget of worry in the back of my mind.  I made a comment to someone the other day that it seems that my family and I have seemed to have settled into the cancer groove and the reality of me having cancer and the treatment days and how it affects me yet when I think about it I still feel like a little kid wanting to throw a temper tantrum full of stomping, crying, kicking and screaming, "It's just not fair!"

I will admit there have been some positives to come out of this but I was learning that when I had to go and help my Mom and Dad.  I won't give the credit to cancer but I will give the credit to GOD for providing me with the community around me. So the what are the positives I see you may ask??

• I have become more aware of the depth of caring in the community that I am so blessed to be a part of.
• My husband is exhibiting understanding and caring in depths I haven't seen before.
• I am grateful that even though I have lost my Dad that we were able to repair our relationship back in 2005 and we had the opportunity to live in that repaired relationship for a period of time.
• I have been able to rely on the strength that God taught me so many years ago through another adverse situation and it has not failed me.
• I know that I can cry out to God and lean on Him when I need to purge the tears, fears and other scary feelings; sometime the one i don't share with anyone but Him.
• I have friends that I can rely on and ask for help even though I feel uncomfortable with doing so because I don't want to inconvenience them yet they tell me it is ok and hug me while doing so.

I am sure that I will see more as I get further away from this time and as I also move further into this time but I know from previous experience that you see the blessings more clearly after the difficult time is over and you have moved away from it.  I do wonder what God is going to do with me after this time is over or is He going to add it to something that I am already doing?  Only time will tell. 




I will wait for His voice in my ear and I pray that I hear and heed what direction He wants me to take or incorporate what I will learn through this journey into my life or calling.  You see, I know that God doesn't want me to hurt or be sick yet I know He will use this time for my good and possibly for the good of others.    I will admit to wondering why is it that some people seem to go through life with few difficult situations while others seem to have many difficult situations in their lives.  

I am still angry at cancer and it may take time to purge the anger but I have a God who understands and listens as well as friends and family that also understand or at least listen and let me vent which I heartily thank God for.

Energy n stuff

For the past couple of days the energy fairy has been generous to me and the tired bus has been put on detour route that passes me by.  Yesterday I felt....normal.  A strange feeling to have given the recent events that made me the first stop on the tired bus and some days the first bus brought friends to ensure I was wiped out. 

 So what did I do with the extra energy that was given to me?  I made zucchini bread, chocolate chip cookies, dinner, cleaned up dog doo in the backyard and harvested greens from my winter garden for last night's supper.  I was tired by the end of the day but not overly so, just a normal tired that resulted from a normal day filled with normal activities.
 

Today, I still have energy but not as much as yesterday but I did go grocery shopping this morning.  However, I attribute the lessened energy today to the 530am wake up from Kyle needing my help.  My friend, Luisa, has been visiting for the past couple of days and yesterday she was loopy and tired but today she is rocking my kitchen making 3 different dishes for us to freeze plus dinner tonight!  I have also been working on stocking my freezer with dinners so on the days I have no energy to cook I can just defrost and heat up dinner.   

I wonder if this is going to be my pattern through my chemo treatments  2 weeks of feeling like the victim of the tired bus and then a few days before the next chemo treatment I feel normal.  If so then that time frame is truly the time to get caught up on different things that I may have been too tired to accomplish.

There are days I don't feel like eating or I eat very little but my family needs to eat so even though I don't have a lot set aside I feel good that I have at least some set aside.  I am grateful for Luisa coming to help by cooking for us.  She enjoys cooking and I am glad that she is using that joy and skill to help.  Her and her hubby live to far away to help out on a regular basis but I am so grateful and honored that she took time in her rounds of visiting her friend before heading to Afghanistan to include me in that whirlwind of visiting.  I am so blessed to be surrounded by friends who care and help.  Sometimes people who are far away have helped by simply letting me know that they care and that expression of their caring many times is a mood lifter for me when I am blue.

On other news, my hair started falling out on Sunday, just 2-3 strands here and there.  Monday, the amount of hair fall out had increased significantly so I went to my beautician and had her take off the rest of my hair.  I am not completely bald as I still have stubble left but I may go to a barber shop and have them shave off the remainder as the stubble sometimes is somewhat problematic in areas such as getting dressed and such.  So now I am sporting scarves and hats while out in public and at home I go au natural.  I think if the weather was warmer I'd probably go au natural but the head does tend to get a bit cold. 

So now ya'll know what I look like with no hair.  I know it will come back in, I am just hoping that whatever changes happen to my hair that at least it still is red when it grows back in!  I am not sure I'd know how to be anything BUT a redhead!


I had to call the charge nurse of my treatment center the other day to talk to her about some issues I am having with one of the nurses in the treatment center.  This was a difficult thing to do because I really dislike complaining about someone who obviously has quite a few years of training and experience behind them but the issues were a personal dislike of her on my part and additionally the feeling of never wanting this woman to touch me again.  Every time this nurse has touched me I end up bruised - badly. This time I have a good 6+ inch bruise.  Also, this nurse comes across very unprofessional in her demeanor and when I was talking to her about the eating issues I am having she interrupted me and basically told me I was going to have to thus-n-such without fully hearing what I had to say.  I KNOW she has way more experience with administering chemo and caring for chemo patients but that doesn't mean she is an expert on ME!  It was a good talk and I hope this next chemo session will go well (Monday) but I still don't want her to touch me.  


The charge nurse also called in a perscription for Emla cream that should numb the area of my port so that when they access it on Monday it will be less painful.  I don't like IV's or needles but in the realm of my experience of medical pokes, right now the accessing my port hurts worse than either of those.  So if the Emla cream reduces the pain by 1/2 that will be an improvement! 

I suppose that is all from this breast cancer babe for now. Oh! I had asked for prayers for my mom.  She has had her surgery and is back at home and doing well.  She has friends helping her and she has hired an in home nursing company to help her during her recovery time.  She is glad to be home though and have the surgery over with.  Thank you everyone for your prayers on her behalf.

Hijacked

The body that I have is still mine - it moves around as expected and responds to the stimuli generated in my brain.  Yet, there are new sensations that are not normal to me and in many ways frustrating. Let me see if I can explain adequately.

Taste:
     
    Water - doesn't taste "right".  It still is water but doesn't have the same flavor it used to.  I can still drink it if I gulp it down, saving the annoying flavor change for the end. So far I have found that Rain Gatorade, V8 pomegranate/blueberry juice, and soy milk are acceptable liquids that I can drink.

     Mashed potatoes - used to be yummy now they are an example of blandsville in all its wondrous glory.

     Wheat bread - not really a taste issue but more of a stomach/body rejection issue.  Potato bread seems an acceptable substitute.
  
     Cereal - so far all are pretty blah but they are not so blah that I cannot consume them but I definitely eat less of them due to the blah flavor.

     Mac n' Cheese (Kraft box) - ick gross can't even get past the smell of it!  How depressing - a major comfort food DENIED to me! Gonna have to try and see if the homemade stuff will fill the assignment.

     Chicken - this one is strange because fixed some ways it is ok but others it isn't worth it because of the smell or texture it has either in my mouth or when I swallow.

Food is a case by case basis.  Sometime food tastes okish but a bit "flat" but I can still eat the dish. The most frustrating aspect of all this is that I think I want something and then when I taste it, I can't eat it.  Ergh.


Food not only has to pass the smell test but the taste test also.  I really despise throwing food away but with all this sometimes I have no choice, not everyone in the house wants what I have rejected or they have already eaten or they are not home.

Smell - I never know from one day to the next what smell is going to turn my stomach.  I have found that most of Patrick soup's tend to smell awful to me.  Other smells are interesting and mostly related to how food smells. 

Touch - nothing different there except my scalp feels different to me and at times itches like crazy.  Today, it is tingling and itchy at the same time and I have discovered that my hair is beginning to fall out.  Baldness here I come!

My gastrointestinal processes like to run the spectrum of human possibility. (trying to avoid gross TMI here)

Energy - This is a big one.  Morning time seems to be the best for me and I can hold it together until about 2 or 3 pm but then the tired bus hits me head one and a nap is truly desired assuming I can get Kyle settled and occupied long enough so I can have one.  The boys and Molly have been a huge help here.  I find that after cooking dinner I am worn out IF I have enough energy to actually make it.  It is amazing how much energy making dinner uses up!


Insomnia -strikes even when I am tired and usually on a Sunday night -day before infusion.  Hmmm might there be a link here?


Is it any wonder that I feel like my body has been hijacked??!  If the body is sending out memos to inform me of these changes, the postal service has forgotten my address for delivery.  

All these changes are supposed to only last as long as the chemo meds are in my body. So theoretically once the meds are out of my system, all systems/senses should return to normal but sometimes not all the way....and that is a troubling thought.

Eventually all this will go away -I hope- but dealing with it in the meantime can be and many times is very frustrating.  It also has a disheartening effect especially when a multitude of these things occur in one day.  Certain things are always there and so be it but others like to have a party that gets crashed by unexpected guests.  I know I could be having worse things happening side effect wise but this guest list is enough on this body's plate!      

I will get through this because there is really no other positive alternative but this particular hayride really is wild!  I will just hang on to Jesus and grasp the hands of those around me in my support network, near and far.  This reminds me of a scary roller coaster when juuuuuuust before you go over the edge of the hill you take a deep breath and squeeze onto the bar in front of you.  This is like that in many ways and on many days, except this is not a ride you get back in line to ride again.

Monday was another infusion day but just Herceptin this time which is the biological treatment.  They used my port for the first time and because the flesh around it was still tender and swollen - it HURT!!  They have to hold the port with their fingers while they put the needle in.  Using their fingers also helps them locate the edges of the port.  Ideally, they should get the needle in the center of the port but this time because it was still swollen the nurse got the needle in the edge.  This meant she had to re-position the needle but she still didn't get it quite right and called another nurse over to help.  They finally got it in.  Whew!  In the meantime I was squeezing the volunteers hand like the dickens, tapping my feet like crazy and squeaking because I really wanted to holler and I was also leaking tears.  I think that counts as 3 pokes in one which means I had 4 pokes Monday when you add in the lab poke.

I felt like such a baby while this was going on.  In a moment of weakness I whined, "Can't I be at the end of this treatment??", and in that moment I really felt that and in some ways I still do.  I suppose it is part and parcel of this whole process but I am usually such a strong person and I know I will do what it takes to get to end of this process but right now facing getting punctured EVERY SINGLE WEEK sometimes is a bit too much to take. People tell me one day at a time and yes that is a good thing to do because at time when I look at the entirety of what I am facing is it not a surprise that I am cringing from the whole idea? One day at a time is easy to say but very hard to do at times.

On another note we did manage to get our Halloween decorations up and I am glad.  The decorations are a "normal" occurrence around our house each year and even though I was resigned to the possibility that Halloween decorations may not happen this year, down deep I was ready to be resentful of this cancer robbing me of another normal thing in my life. 




On a happy note, we are planning Kyle's fourth birthday party (his first with friends!) and after vacillating about how best handle this, we decided to have a party at the  golden arches. Mainly because they will do all the work because the Monday before is a chemo infusion and I won't have the energy to do all the running around necessary for a birthday party at home.  

 

Here are some pictures of the short haircut.  They aren't the best but it will give ya'll the basic idea.  I am also sharing another photo of the area where the port was placed but please excuse the quality of the pics. I was still recovering from the surgery and the bathroom walls are yellow so they aren't the best background for anyone.

I do have one request to make of all of you.  My mom is having surgery this Thursday for her cancer.  I am praying that the surgery goes well, the surgeons hands are guided by God, that her recovery goes smooth and she heals quickly and that for her this is the end of her physical cancer journey. God has been so good to both of us.  I told her before I left that I wouldn't be able to come back for her surgery because I was going to be in school. Little did I guess the reality.  However, God has provided her with a support network that is generous and deep and I am grateful for those friends of my mom who are going to be helping her during this time.

OUCH!

Ok, the tally for this week is 2 IV's and a surgery!

Yesterdays, surgery "went well" as the doctors like to say and I guess it did since I went to sleep and then woke up with the port in and nothing scary happened.  However, the not so well part is up to me and my body.  I was pretty fuzzy yesterday but that is to be expected.  I was doing ok sleeping or resting but then I reacted badly to the pain meds I brought home, nausea visited and brought his cousin, throw up, along for the ride.  Sigh.  I know probably TMI for some of you but oh well.  So I am pretty weak today since I really haven't eaten since day before yesterday but I am attempting to eat right now by taking very small mouse bites of graham crackers. 
Nibble, nibble, nibble.

I am moving slow today but I am grateful for my family and friends who have rallied behind me in this journey.  My sweet hubby who takes time off work, calls to check in with me to see how I am doing, my boys -Patrick and David who help with various things and of course Kyle who gives great hugs and kisses.  I am blessed with friends who also help such as Molly and Gary who picked Kyle up yesterday from preschool and took him to their house until we were ready to bring him home.  Sharon, my MOPs mentor Mom, who brought over a dinner that my family ate last night and others who send me good thoughts and prayers.  My hairdresser who cried as she cut my hair, even the sympathies of my neighbors when they find out.  Many of you have commented that I am strong and I will get through this because of that strength yet I see myself as not strong.  There are two places I get my strength -God and family and friends that He has surrounded me with.  I thank Him so much for the wealth of friendship and family that surrounds me.

Chemo -Round 1

Chemo infusions involve sitting in a chair, IV in the arm (until I get my port), and time!

So yesterday's chemo treatment wasn't to bad considering that from what the nurse have told me.  I think the worst part of it for me was 1) waiting to see what immediate reactions I would have and 2) the fact the IV in my arm hurt if I moved my arm.  The nurse said redheads and fair skinned people tend to be more sensitive to IV's sometimes.  It was very tender to the touch so I spent 5 hours with a heating pad around my arm and as long as I kept the movement to a minimum it was fine.  

It turns out that I will be getting infusions of Herceptin every week until the chemo portion is done and then the Herceptin will move to every 3 weeks.  Thankfully, the Herceptin is a shorter time of infusion, 30 minutes or so.  

Things I have learned from yesterday:

1. If I want control of TV then I have to pick a chair pair that has no one there or someone who isn't watching TV
2. Not to bring peanuts snacks cause one of the nurses is highly allergic to peanuts
3. I brought enough stuff to do but bringing our portable DVD player is probably good idea cause daytime TV usually blows unless they get good cable channels.  
4. Odds are I will be the youngest in the room recieving medication because yesterday it was all older people.
5. Don't be hesitant to ask for a drink or a snack even though it feels weird to ask for something I am normally capable of doing.  
6. I think bringing my laptop might be a good idea if they have WIFI cause I've got nothing but time while I am there! Facebook game time!! ;-)

I came home had a snack and went to bed for about 2.5 hours. I did start experiencing a dry mouth and a headache last night.  Today I feel tired even though I got decent sleep last night and I am also feeling body weak like I am recovering from a really bad bout of flu. 




 So far no nausea but if it does happen I have meds for that.  


In any case, the anxiety I had is lessened quite a bit but there is still some because I am sure I haven't had time to experience all the side effects I am going to have. So there are some unknowns as of yet.

I am just grateful for the support system that I have been blessed with.  Yesterday, Fred was with me the whole time except to get lunch and Patrick took care of Kyle and did some house stuff.  I also have my friend Molly and others who help out or are on standby.  God is so good in giving me time to build up friends here in Washington who are so willing to offer their help and to have kept in touch with my Arizona friends that even though they can't help physically; they help by sending me good wishes and praying for me and my family.  I don't know what the purpose of all this is but I know that I will learn lots of little things and maybe some big ones.  I know God did not cause the cancer in my body but I know that out of this He will be glorified, and like Joseph, good will come out of this for myself and my family and possibly for others.