Hair...

As probably all of you are aware, most people lose their hair during chemo treatments.  This is due to the drugs trying to kill off fast dividing cells i.e. cancer cells.  Hair is also fast dividing and so the drugs cause death of the hair cells as well.

I'm expecting to lose my hair but I wasn't sure what to do about it.  I planned already to chop my hair off to reduce the trauma of having handfuls of long hair come out. But do I stay bald or get a wig?

I don't think I'm going to mind having no hair but wearing a wig is something recommended.  Makes a person feel more normal when they are out.

So last Thursday after all my appointments, David and I stopped by The Wig Boutique to check out their stock.  Suzan kindly helped me out asking good questions to try and narrow my choices down.  I thought initially I wanted a really long wig.  I have never had Rapuzel hair so why not buy it?  That would certainly be Madeleine's choice for me.  Suzan explained that long hair wears out a lot faster so I would only get about 3 months out of it.  At $300-$400 that is not good value for money.  I tried quite a few on, short and medium length.  Most of them were quite easy to say no to.  I looked like a drag queen in quite a few!  We settled on an inverted bob which gives me some length but also preserves the wig longer.

Now for colour.  Suzan asked if I wanted to stay grey.  I don't dye my hair for a lot of reasons mainly because I want to age gracefully and I'm too cheap to pay the salon prices.  I'm proud of my grey hair and most people say they really like it.  But after some thought....NAH!!!!  If I'm going to wear a wig, lets make it fun.  So now I'm in possession of a dark strawberry blonde wig.  I would have to remortgage my house to pay for the delicious highlights in this wig.  Madeleine thinks I now look like her which pleases her to no end.

Oh and that's another thing, I was worried about how losing my hair would affect Madeleine.  She is emotional but tough too.  She has seen me with purple leopard spots before but she was noticeably disturbed by it.  So I started to talk about how the drugs would make me bald and that I would still be the same inside...blah, blah, blah.  She burst out laughing, "Mama's going to be bald.  I'm going to laugh at you when you're bald."  She went on hooting for quite some time.  Well, never mind, she will be fine!

I'm glad she can keep a sense of humour about it.  I suspect she will want to put temporary tattoos on my head...might be fun!

I've put the pictures in and when I lose my hair, I'll add some more so everyone can have a good giggle!

 Not as short as I had planned but my hairdresser refused to go any shorter!

I don't recognize myself with a wig on.  I really feel like an impostor LOL!

Lots of hugs and love,

E

Good news post

So much good news...

We have secured an apartment ten minutes away from the hospital.  This is huge!  I was sleepless thinking about Linda and David having to live in a hotel.  Its a lovely little apartment with gorgeous views of the Bow river.  And its cheaper than the hotels I had booked! I'm just working on getting them a parking spot but at least they will have a nice place to rest their heads!!!

A lovely lady from CPP Disability phoned me to let me know that I have been approved for just over a year of CPP support.  YAY!!!!  I have no idea what the payments will be but I'm so relieved to bring in some income.

Also we now have a chemo plan.  This was an ongoing issue.  I have severe allergies to medication.  Enough that my nickname around hematology at the U of A is Ms.Allergy.  One of the main drugs used to condition the body prior to transplant is ATG, a serum derived from horses or rabbits.  It suppresses the immune system to prevent rejection of the donation and suppress Graft vs. Host Disease.  It is also the front line treatment for Aplastic Anemia.  When I had the ATG (ATGAM or horse variety) treatment, I broke out in hives the size of dinner plates and started to get itchy in the throat.  Luckily my doctor was sitting there chatting with me as I decided, as she puts it, "misbehave".  I was able to finish treatment with a tremendous amount of Benedryl and steroids but Dr. Larratt swore she would never do it again.

The transplant team was at a loss of how to deal with this.  But after some pow wows down there and email back and forward with Dr. Larratt, David and I, we have decided to try the rabbit variety.  We will run a test batch and hope that I will take it better.  I've always preferred rabbits to horses anyways.

Its a relief to have a plan in place that we can all agree on.  This new doctor is really trying to work with me rather than give me orders and I appreciate this hugely!

I completed a heart ultrasound yesterday.  No news one way or another but the machine thought my heart rate was 200 beats per minute.  I'm not sure I'm going to trust the results. I also did a chest x-ray and saw the ophthalmologist. All good on that front.  I did take a picture (sorry about the poor quality) of one of the tests at the eye doctor.  Its a very odd test for tear production.  Freezing drops are put in and then strips of paper.  Unfortunately, the freezing didn't work in one eye and I over produced tears,failing the test.  I think my eyes did just fine....stick paper in my eye, I think I'm going to tear up!

This weekend, I'll post about some fun David and I got to have yesterday afternoon. It has to do with my hair....

Hugs and Love,

E

Warm hugs...

I have lots of positive news to tell but I will have to leave you in suspense for a day or two.  I really want to take this post to talk about the huge support I have been getting.  Over the last two days, I have been overwhelmed by the emails, messages and letters sent my way; encouragement, love and prayers.  I cannot tell you how incredibly grateful I am for all of it!

I am not at all good about asking for help.  I try not to dump my emotional state on other people, though my poor family gets it.  I'm not proud or shy but I figure people have their own problems and lives.

And when I get fearful, I start battening down the hatches.  I withdraw and become less communicative and less social.  It's my way of protecting others from the raging storm.  As one of my spiritual advisers, dear Fr. Michael, told me, I don't have a problem living in the moment, its seeing beyond the moment and emotions that is my challenge.

So to receive such outpouring of support at a time when I was flagging a bit is huge for me.  It has lifted me up incredibly.  In some posts back, I spoke of the "Little Engine that could".  Its your love, support and prayers that will be pushing me up that hill.

I do believe that we are brought into each other's lives by design.  We have no idea what part we have to play or what impact we have.  I consider it a privilege to be included in your lives, no matter how small. Although we may be separated by years gone by or by miles, I send each one of you love and good thoughts and keep you in my prayers.

Stay tuned for lots of news tomorrow.

All my love,
E

Some good news...

I was in for a lung function test today.  I have been worried about this as I am a smoker and I have low blood counts.  However despite all of this the tech said my lungs are excellent!  Of she added that it wasn't an excuse to continue smoking. LOL

Also I received a call from CPP Disability.  They are now reviewing my file.  I am very hopeful that they will accept my claim.  Any extra income would be great!

To celebrate, I'm off to lunch at Timmie's with my best friend.

Three weeks til liftoff....

I feel stunned!

I was going to phone my nurse this morning to find out when my appointments start  but at 7:30 a.m. I got a phone call about work-up appointments starting tomorrow.  Ok, no problem!  But then they sent me the itinerary and AHHHHHHHH!

It is five pages long!  I knew there was a bit to do but certainly not so much.

This week is a pulmonary function test, an echo-cardiogram and an ophthalmology appointment.  On Sunday evening, we leave for three days of appointments in Calgary. More appointments when I come back.

Also, a surprise! They are likely giving me radiation.  What???? That wasn't mentioned in our interviews.  Apparently, it might help engraftment of the new bone marrow.

I also managed to book some hotels for David and Linda, however, I'm still on the lookout for an apartment.

My heart is going at an ungodly rate and I feel a "little" stressed.  I guess I thought I would be able to have more time to spend with family and friends but it looks not so likely now.  The positive thing is that at least there is something to focus my energy on.  I've been wandering around the house lately with the anxious feeling of nothing to do but be anxious.

The tension has noticeably risen around me.  Madeleine and I are both tense.  She is constantly saying "I love you very much".  We are both very close to tears which seem to leak out with no particular trigger.  David is being a rock but I can tell he is more on edge. Josh just takes it in; he doesn't want to know too much.  He told me that it would make him too sad.

It hasn't helped that our other main car blew a head gasket and we will probably have to buy a new one.  This morning, it appears that the furnace in our house isn't working well.  I have to file back taxes for a year and it turns out that the government may have been paying me money they shouldn't have.  Everything seems to go at once.  Frustrating but what can be done?

On the good side of life, I have been paying more attention to my relationships and everyday life.  I enjoy moments more, the hugs, the taste of food, the smiles and laughter.  I have that feeling of missing everything before I'm even gone.  I want to savour everything because it is going to be a long, hard recovery.

My posts will increase and be shorter now that everything has started.   I'm hoping David can get some fun pictures to put up.

Hugs and Love
E

Celebration

We have a family cookbook and the predominant number of recipes lies in the cake section. My mother excuses this saying " I LOVE cake." Cake represents celebration and that is what this post is about today.

When I turned 7, my mother made me the most spectacular cake.  It was a 3D castle cake, decorated with candies and the inside was filled with scoops of ice cream.  I remember feeling so special to have such a wonderful, magical cake.

My mother always put in hard work and long hours to make our special occasions lovely.  She knew how to mark the special moments of life. To make them different than the everyday routine.

I'm also indebted to my Ukrainian/Russian friends for teaching me how to celebrate.  Tables are jammed full of delicious and special dishes.  Vodka was brought out to toast one another.  I'm sure there were good excuses for the parties but often I felt that there was no other reason than we were alive and happy to be together.

 Last night, we celebrated the lives of our dear friends, Sasha and Oksana.  Oksana asked me not to do too much for their birthdays this year as she hesitates to celebrate when her home country of Ukraine is in such turmoil.  But the one thing she agreed to was a birthday cake. So a birthday cake we will make...And that is why I was up at 7 am to start a cake I've never made before. This cake requires a full day to make. Layers of angel food cake and baked meringue and frosting.  Oh my!

I will freely admit that I'm not the best baker; I understand beef better than butter and sugar.  But I do believe that we must celebrate life and love as often as we can.  It reminds us of the goodness of life and gives hope for better times.

Even facing this transplant, it is important to celebrate.  I will try to remember to celebrate  in the hospital too.  The day I get my transplant will be a new birthday,  when my blood counts rise, the day I get to wake up and not wonder about how my hair looks 'cause I wont have any, the day I get out of the hospital and even more, the day I get to come home.

When I was in getting a blood transfusion yesterday, one of the nurses said, "Come back after your done and we will have cake!" Don't you worry.  I will probably celebrate my new life with cake everyday!

So here is to celebrating life, even when we have to search hard to find reasons to celebrate. And here is to cake!

Kiev cake-it is delicious!

As per normal....

Things have mercifully gotten back to normal.  The fatigue has retreated some now and I'm able to get out of bed again. As soon as I was up, out came my mixer and I baked steady to make up for it: bread, pizza, malt loaf... yum.  I'm grateful for our regular routine.  It is nice just to live my life for a while.

                                            Home reading

                                             Yes ....they are that silly

                                             Yummy homemade pizza!!!!

                                           Three of us polished off a 14" pie....gluttony

On the transplant front, I am trying to arrange caregivers.  Calgary would like me to have a caregiver 24/7 when I get out of the hospital. David is back at work and my mom will be caring for my daughter.  My aunt Linda has generously offered to come be with me for a month. I'm very grateful as she is expecting another grandchild in August and she is coming all the way from Virginia.  I am hoping that I will be strong and healthy enough to continue on my own during the week between family visits.

A piece of good news did come this week.  The social worker in Calgary believes that she can get AISH funding for me more quickly than in Edmonton.  I was told prior that it would take a year to get the funding if I was even approved.  Having any amount of income will help tremendously as David will be supporting two households during this time.  Keep your fingers crossed!

Until the next time, hugs and kisses
E

The Easter Season

David and I were looking at our calendar preparing for the transplant when we realized that my transplant coincides with the Easter season. I will be starting chemotherapy on Good Friday and get my transplant soon after Easter.  David said its nice symbolism for my journey and I agree.  Chemotherapy is a little death and the transplant is new life.  My preparations for the procedure, a Lenten season.

Even though I am a cradle Catholic, I have never observed Lent very well in the past.  But this year, it is fitting to do so.  Traditionally, Christians have given up things for Lent in preparation for Easter.  While I can't fast in the traditional way, I have decided to give up fear for Lent.

Fear has been a big part of my life, much of it surrounding my medical condition.  I remember vividly reading the information pamphlets on Aplastic Anemia at age 19 and thinking "Now I know how I will die."  There was a lot of fear when my son was dying a slow death inside of me because my body was in a state of crisis with the pregnancy.  Fear after Aidan passed, that I had failed to do more for him and protect him as a mother should.  Fear of side effects from treatments, fear of death when I had massive allergic reactions, fear of losing control. Now I am afraid of the transplant, the accompanying discomfort and sickness.  I'm afraid of everything that could go wrong.  And bizarrely, afraid that I won't make the most of my new life and new beginning when it's all over.

But fear produces nothing productive in my life, never has.  I've learned in the past two years that the only way not to be afraid is to walk through the fear.  To resign to what will be; "Let go and let God."

At my blood transfusion yesterday, my nurse (who has known me for years) told me I was brave.  It surprised me and pleased me.  Her comment reminded me of "The Little Engine That Could".  So instead of submitting to fear, anxiety and doubt, my mantra for the next 40 odd days will be "I think I can, I think I can..."