Category: Cancer Sucks

Let’s Talk About Mental Health Issues……

I’m frustrated with the whole concept of guilt and Mental Health.

I, in no way, have all the answers; and on most days I question whether I have any answers. What I do know is that I deal with anxiety and have for as long as I can remember. My mom says that I was fearless as a child and so, I’m not exactly sure what happened, because I don’t really have any concrete memories where I wasn’t dealing with anxiety.

At least 3 of my kids deal with some level of anxiety and Jeremy is also dealing with ADHD, Executive Function Disorder, Learning Disability and Autism. All of those fall under the “Mental Health” umbrella. They all have areas of “Brain Disfunction.” In my mind, that means there are areas where the brain is not functioning in a Neuro-typical way. I do understand that there are many who don’t want autism classified as a mental health disorder because it is usually thought of as being a genetically predetermined disorder, and there is a certain amount of “shame” associated with mental illness or mental disorders.

I choose to think differently about the whole concept of Mental Health.

I deal with any physical health issues for myself or my children in a completely non-guilty manner. If myself or one of the kids has a cold, or a broken bone or some other physical ailment, I don’t feel guilty taking them in to see our Family Dr or a specialist, if needed. Why then, if myself or one of the kids are dealing with Mental Health Issues, should it be any different?

In my mind, it shouldn’t be any different at all.

If my car needs a tune up. I get it done. If my house needs a hose for the water tank, we get it done. If our clothes are in need of repair or replacement, then I take care of it. Why do we take care of our physical bodies and our belongings, but hesitate when it comes to mental and emotional issues.

We, often, hesitate to talk about it openly and freely. Sometimes we hesitate to even admit it to ourselves. It’s a tricky subject and not one that everyone understands or even cares to try to understand, but Mental Health and Mental Illness are not going anywhere.

I’m trying to raise my kids to understand that Mental Health is as important as Physical Health. It’s important to take care of your mental/emotional state; and it’s important to take care of your physical state.

If I needed insulin because my body never produced it, or it produced a very small amount……would that make me “less” in some way. Would it mean that I was broken and not as valuable or worthy as someone else who didn’t need insulin shots? So what if I need extra seratonin in my brain, for either a while or even forever……I don’t see how the two are different. What if genetically, I don’t produce as much as you do? Or what if I experienced some traumatic event in my life and the stress has negatively affected my body in such a way that I needed some help, in the form of seratonin or any other mental health drug…….why is that any different than needing insulin or any other drug.

I don’t see that it is.

In my family, there seems to be a huge history of anxiety and depression. I have also experienced a stillbirth, 4 pregnancy losses and cancer, as well as dealing with a child/children with special needs. So whether it’s genetically predispositioned or because of some life trauma…..I don’t know.

What I do know, is that being on medicine has helped “ME.” I’m not advocating that everyone needs to be on meds. Because if you can deal with your mental health issues through counselling and Cognitive Behaviour Therapy….then awesome….but by doing that, you are still “taking care of” your mental health.

For the first time in my life, that I can remember, I feel like the inside of me matches the outside of me. It’s crazy hard to explain, but I will try. I’ve had many people not believe or understand that I was anxious (as a teen or young adult) because I seemed so confident and in control. I think that must be where my kids get it from. They seem to hold themselves (mostly) together when they are at school or church or “out” and then when they get home, they feel comfortable enough to “fall apart”.

I don’t know that I did a lot of “falling apart” but I did use “control” as a method of dealing with how “out of control” I felt. I felt that I needed to control my situations, the people around me and myself in order to feel safe. It got to the point where my “control issues” were hurting my relationships. And yet, I didn’t understand “why” I felt the need to “control” everything. I just knew that I felt safer when I knew exactly what to expect.

I did believe that I was a good person and yet a part of me didn’t believe that. I believed I was a good friend and yet the insecurity and anxieties held me back from actually “being a good friend.” I thought I could do things like “sing” and yet I could never put myself fully “out there” because I couldn’t possibly be good enough and what if I made a mistake…..what would people think of me. I know that lots of people deal with a certain amount of insecurity and I don’t know that I can fully explain just how it felt inside of me. But imagine if you thought you were good enough but then you weren’t really sure if you could believe yourself…..and if you were so unsure then maybe you really weren’t good enough. Throw in some perfection issues which meant that you couldn’t or wouldn’t do ANYTHING you weren’t absolutely certain that you could do with 100% accuracy and confidence………and that pretty much left you not doing much at all. You wanted to do “stuff” but unless you could control the situation and knew exactly what to to expect and exactly what people’s reactions would be and exactly what the outcome would be……….which having all of that fall into place for any specific event, was pretty much an impossibility and if it did…..you came across so confident that no one would ever guess that you were dealing with insecurity and anxiety……and throw on top of that whole mess, that you never wanted to come across as anything less than confident and so you were exhausted all the time just trying to hold yourself together so that you could come across “PERFECTLY” because anything less than perfection was failure and “FAILURE” was never acceptable and basically you have a perfect recipe for disaster.

Knowing what I went through as a teenager/adult, and then when I finally figured out that I was dealing with “anxiety”, feeling so relieved and yet angry and grieved over all the lost time………I am strongly advocating for my children’s Mental Health when necessary.

I look back at my teenage years when I didn’t feel strong enough or worthy enough or acceptable enough to do things like, go to college or university. I figured that I was good at looking after kids and so rather than do things I was interested in, like music or teaching or even in the medical field….I took whatever jobs fell into my lap, got married and had kids. I was too scared to do anything else.

I love my husband. I love my kids. I’m not unhappy with my life, and yet…..I could have done things differently. I’ve shared this with people before and I usually hear something like, “We all feel insecure and regretful of the things we wish we had done but didn’t do.” This is different. I’m talking about life crippling anxiety. Like there where things I wanted to do and yet was SO scared to do them that even the thought of doing it stressed me out, and so I did what felt safe.

I’ve lived my entire life, up until now…..only doing things that felt safe……and that doesn’t seem like a huge list of things, especially compared to things that I have dreamed about doing over the years.

I’ve accomplished a fair amount in my 38 years but I’ve dreamed of accomplishing so much more. I’ve just discarded those dreams because I wasn’t good enough, or people would think I was stupid for wanting to do those things. I believed the lie that others could do it better than me and I shouldn’t even try in case I failed. Because failing is one of the worst things ever. I believed that. I’ve believed that for so many years and I hate it.

This is why I’m a HUGE advocate for my kids and their mental health. I’ve pushed my kids beyond every “limitation” that I’ve had that has held me back. I’ve explained why I’m pushing them into uncomfortable situations. I’ve had them ask for things from adults/teachers/doctors/etc. when they felt uncomfortable doing so. Discomfort isn’t a bad thing. Failing isn’t a bad thing. It just means that you tried and for whatever reason it didn’t work out, this time……..and that’s ok.

Never try, never win
never get a break
You miss a hundred percent of the
shots you never take

Hedley came out with this song and it’s been HUGE for me……

I’m a lot more open now. I say “yes”, when everything in me wants to say “no”, because “NO” is safe. I don’t mean that I say yes to everything. I’m still in recovery mode from the 2.5 years of cancer treatment and the havoc that wreaked on me. But, I will honestly assess my stress level, versus just saying “NO” because I’m scared. I ask myself if I’m allowing anxiety to hold me back from saying yes to something that I might actually want to do and even be good at. I try to be honest with myself about what I can do and what I can’t do, and to not view everything through the lenses of anxiety. I will even tell others that any hesitation they might sense from me is anxiety and I’m not willing to allow it to control or rule my life any longer.

Does this mean that all my days are good, confident days…..NOPE! Not at all. And when I’m having a particularly bad day – as far as anxiety goes – I am gentle with myself and honest with both myself and others as to how I am doing. Because I know that tomorrow is a new day and most likely I won’t feel the same. I have stronger days and weaker days, but now I know that I am “fighting” anxiety and that it’s not me……I’m not bad.

I am enough. I am good enough. I am strong enough. I am confident enough. I am enough.

I want my kids to believe that they are good enough and can do whatever they want. I want them to “go for” the things they want and so I advocate for them and I encourage them to advocate on their own behalf. We talk about strategies for dealing with “issues” and “insecurities” and “anxieties”. We use medication as an aid, if necessary, and we do it all without guilt. There is no guilt or shame in needing help…….whether its physical, mental, emotional or spiritual.

I am enough!
They are enough!
You are enough!

Letting Go

Sitting at the kitchen table, plopped down in the middle of a mess.

Staring at a blank screen…..

Smelling the herbs just picked from the garden and hung to dry……..

This has been a very different summer. Different than any we’ve ever had before. I’ve not written a lot. I gave myself the summer off. Well, if I’m honest, it’s been a long time since I’ve posted regularly. Stress is a funny thing, and by funny……. I guess I mean horrific.

Stress is a killer…..a killer of energy, a killer of focus, a killer of creativity…..

Even now, I have so many words floating through my brain and I’m not sure which ones to grab onto and which ones to banish and which ones to allow to continue to float around in there.

I’m doing a lot better than I was…….at least I think so. And yet, I’m not sure where I’m going.

Angelica came back from Camp Goodtimes (The camp put on by the Canadian Cancer Society) and was quite emotional as she shared with me how she was realizing that she could never “go back” to normal. There is no “going back”. There is no “picking up where we left off” or “getting back to where we were or the people we used to be”.

This is such a tough concept to grasp. There is so much grieving and letting go to do and it just keeps going on and on and on……so much so that this feels like the new normal and yet……I don’t like this. I don’t like this new me. I don’t like the me who is exhausted all the time. I don’t like the me who can’t organize and plan and arrange things instantly. I don’t like the me who forgets things and lets balls drop. I don’t like the me who can’t accomplish very much in a day.

I feel like I used to be SO. MUCH. BETTER. at everything. And recognizing that I’m no longer that person is a tough thing. I want to be that person. I want to be able to do more and organize more and think more and handle more and yet what I’m stuck with is SO. MUCH. LESS!!!!!

Less organizing, less tidy, less capable, less focused, less disciplined, less stable, less energy, less…….just SO. MUCH. LESS!

And I hate it!

And yet, what I feel that I need to do, is to recognize that the “Old Me” is “no longer……she was buried under a mountain of stress and cancer and grief and loneliness and exhaustion and……

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This…..the me sitting here right now with her scattered thoughts and messy table and even messier kitchen, with no clear schedule or plans or meal plan (that one really gets me – and yet everytime I sit down with my paper and pen….the blank sheet mocks me with my inability to “make it happen” and I put it all away and allow myself to get distracted by something else that doesn’t require so much thought or energy)…..the woman who prided herself on the healthy foods she fed her kids has been replaced by one who allows her kids to forage for cookies and tortilla chips or dry sugar cereal and calls that breakfast. This person is who I am now….this is what I have to work with…..and I find that so difficult.

I’m trying to accept her. To love her for all her faults. To recognize that for all the things she can no longer do or be…….that there are still things that make her incredible. I’m trying to love the fact that she is more compassionate than she has ever been, that she is more understanding and accepting of people, that she is less judgmental, less controlling. I’m trying to believe that there is good that has come from all of the bad and that even though there has been so much loss…..that there is still “gain” and yet its hard…..

When I see all I could do and to try to stack it up against what I can do now…….I fall so short.

It’s a tough concept….to let go of who you were and to accept who you are…..much more difficult than you’d think.

I’d like to think I’m getting there, but I’m still not sure I like this new me…..and yet, I can’t go back. I’m not even sure I’d want to.

Changes can be Good

So many new changes…

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We moved into our new home just over a week ago. The home itself is lovely and bright but the actual move just about did us in.

We have moved so many times over the past 18 years but this move was by far the absolute hardest…..even taking our move from Abbotsford to Langley after 10 years of living there.

I’m not exactly sure what made this move so horrific, but I’m almost positive that our “reserves” to be able to handle stress were non-existent and that made things so SO tough.

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We have things settled down to where we can sort of function but we are not actually “settled”. My room is a disaster with unopened boxes still stacked about and we are still trying to figure out how to place our furniture. It’s tough when everything had a place and now the layout has changed and you are not sure how to “Tetris” everything in. There is quite a bit of puzzling and re-arranging to try to fit 7 people and all of their stuff into a new space.

Jeremy is finally starting back into his regular homeschool routine after 2 weeks of chaos. We started a little bit at the end of last week just to ease him into it and then we hit the ground running this morning. Our “office/homeschool” room is still a bit chaotic but it’s coming along slowly.

One of the bigger changes around here, as if moving wasn’t enough, is that Siah is going to the local Elementary School. He started the first Monday that we moved. He’s been so excited. We had a big meeting with the school before we moved and then another “intake meeting”. That one was kind of rough because you are talking about all the ways your child struggles and will need help. Having a child with learning differences is not easy but having already gone through the Infant mental Health Clinic at BC Children’s has totally given us a leg up to be able to get him the help he needs.

It’s exciting to see him SO excited to go to school and meet new friends. Today he is going to attend until noon. They’ve started him attending slowly and are working up. We’ve gone from 1 hour last Monday to half a day today.

I’m shocked at how much it feels like I have “all this free time”. It’s quite a lot of work teaching two kiddos while supervising a third and trying to care for the home too.

So not only are we adjusting to a new home but also a new schooling balance. I’m excited and exhausted. Looking forward to spending the summer out on my deck and in the backyard.

Just trying to get through today…….that’s how my world feels right now. Just focused on today…….sometimes that’s all I can handle.

But I feel like this is a new beginning and I’m pretty excited. I have no idea what the future holds but for the first time in a long time……I’m feeling that we are headed in an upward direction. I feel like I can breathe. I don’t feel like I’m drowning. I’m tired but feel like we’ve crossed over from barely treading water to being able to rest and rejuvenate. It’s such a welcome feeling after the past 3 years.

Not like an elephant

My dad used to ask odd riddles. (I would never do that to my kids…) One of the riddles went like this: How do you carve an elephant out of a block of wood?  The answer is: You take a chisel to a block of wood and knock off anything that doesn’t look like an elephant.

elephant

As dumb as that it, it’s relevant in raising a family in today’s world.  You have to know what your family is supposed to “look like” and knock off stuff that doesn’t look like that.  I guess its also like driving a car; after a while things just look like they are supposed to.  You can’t really explain why you stop before going through a green light, but something just doesn’t fit the normal and then a car runs a red light right in front of you.

This happened today for me with my daughter. Angelica has fought cancer, and now she is fighting to get back her strength and mobility.  She wants a car, she wants a job, and most of all she just wants to be normal (at least as ‘normal’ as one of my kids can be).

She is taking a class at school called ‘Planning’.  In this class they discuss all kinds of relevant stuff, like what skills will actually make you successful in the real world and how to think critically and how to prepare for a career and how to apply for a job.  This part is awesome!!!

In teaching the class, her teacher wants everything to be ‘real’. He wants them to make resumes with skills that they actually have, select a job from the local paper that they might actually apply for, write a cover letter for their tailored resume as if they were actually applying for that job, and then conduct a mock interview where you explain why you want the job and what your qualifications are.  This part is awesome!!!

The line was crossed for me when her teacher (name blurred to protect the well-meaning) told her that she couldn’t apply to be a “mother’s helper” because she can’t run after kids on a playground if they start to run away. Again, this is all in the name of making this exercise ‘real’, and I kind of understand the point.  This went back and forth a little bit, but today Angelica got this note:

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An alarm went off inside me… Now that I have processed it, written a response, received an apologetic call back from the teacher, I know perfectly well why this is bad, but I wrote the email before even fully thinking it through… I just knew it didn’t “look like an elephant”.  Here is my reply:

As per attached, I do not agree with this and I want it to stop immediately!

Angelica has fought cancer with every fiber of her being for over three years. It has been one of the most difficult things that I have seen a child go through. Angelica was very athletic and was talking about signing up for baseball before she was diagnosed with cancer. The most painful part of the treatment for Angelica was what it stole from her in terms of time and opportunity. Now she is in a place of working very hard to recover and we are constantly reinforcing for her that she can do anything.

In an attempt to make this job interview as real as possible, I believe that you have crossed a very sensitive and very real personal boundary. The facts of her “medical condition” have only been discussed at length with Mrs — and Mr —. By repeatedly questioning Angelica’s “mother’s helper” job application and telling her that she couldn’t do that job, you are 1) incorrect about her condition, 2) incorrect about what a mother’s helper job is, 3) acting in a manner that will be harmful to her recovery, and 4) breaking the spirit of my daughter.

  1. Her condition is such that she should avoid running or doing major impact, but is completely capable of it if needs be. I don’t believe that its really her responsibility or requirement to provide you all the details of her condition to take this class. If she says that she can be a mother’s helper, then you are in no position to say otherwise.
  2. We have employed a couple mother’s helpers in the past and it did not always include taking care of children. A mother’s helper may be required to do household chores so the mother (who is still in the home) can spend time with their child. A mother’s helper is not the same as a nanny as a nanny is left alone with the child and chores. If Angelica applied to be a mother’s helper to our family, and I knew what I know about her capabilities, I would hire her in a heartbeat.
  3. Angelica needs motivation to do all the physio that she is required to do. Her motivation right now is that she wants to buy a car, and she needs a job to do that, and she is doing her physio as hard as possible so that she can get an actual job as soon as possible. By making her focus on limitations (that aren’t actually there) you are taking away her motivation.
  4. Angelica, who holds her emotion in to her own detriment, has broken down in tears about this. She is getting the message from this process that she is not good enough, that she is broken, that she could never get a job. My daughter has the spirit of a fighter, and in fact she has fought through cancer to live. But it took a lot of effort on the part of us, her parents, school counselors, friends, neighbors and family to constantly encourage her to fight, to win. I did not tolerate negative reinforcement then, and I will not tolerate it now.

I believe that walking the kids through real world scenarios is VERY VERY good. I wish that I had been taught what it is to apply for and compete for a job when I was in school. I understand the motivation for making it real, but I ask you to step back from the “realism” in this area.

I was impressed when I read my own email. The teacher called me right away, immediately saw my point and has set out to amend the situation.  I wouldn’t always jump in to fight for my kids, but there are times when I do jump right away and I can’t really explain why… I just know what my family is supposed to look like and I’ll knock off anything that doesn’t look like it.

When do you jump in and fight for your kids, or let them fight for themselves?

Success and Anxiety

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So, I tried again tonight and YAY! I made it. I re-did Week 2 Day 3 of the “Couch to 5k” program AND…….did it with no problems. This is after not running for over a week…..almost two weeks? I’m not sure? I’m quite excited about that.

My knees feel tired but not injured which is good.

So Saturday, I’ll be attempting Week 3 Day 1…….which is a bit of a jump from this week but I’m trying to not worry about that.

I have been worrying quite a bit though. If you’ve been reading here for a while, you might remember that at the end of last year, I realized that I’ve been dealing with and fighting against anxiety, my whole life (for as long back as I can remember). Most specifically Social Anxiety but heck, if it can be worried or stressed about……most likely I’ve worried about it at some point in my life.

I went on Anti- Anxiety meds back at the end of November 2012. I was started on an extremely low dose and it made a HUGE difference. I don’t even know that I could fully explain (and most definitely not from mg phone – I’m posting from my phone……yah for the WordPress App) how much of a positive difference it made and how fast.

When I found out I was pregnant, at the beginning of January……to be honest, I felt devastated because it was best for the baby if I went off the meds. I had UNREAL amounts of anxiety for the twelve weeks that I was pregnant and would have been seeing a Reproductive Phsycologist this week had I still been pregnant. (That appt was to discuss the safest meds I could take that would still help me.)

Probably, had I not gone through the 2-2.5 stressful “cancer” years……I’d still be just plugging along; but those years really did a number on me. There is so much “fall out” from a family member going through something like that.

I started back on the meds as soon as I miscarried. I went back to my dr and checked in with him. It was all good and I made an appt for a follow up in 2 months from then.

But the meds don’t seem to be affecting me in quite the same way they did initially. I’m not sure if hormones are at play – my hormones always seem to be messed up after a miscarriage – or what the issue is but what I do know, is that I feel anxious. And it SUCKS!

I have an appt for Wednesday to talk about the possibility of a dosage increase…..but I’ll see what my Dr. says

It’s tough to feel anxious about stupid things. Things that really should make no difference and most people wouldn’t even give those things a second thought. Where as me……I fight those thoughts a third and fourth and fifth and even tenth time; and get more and more exhausted because I’m always fighting “the anxiety”

It’s hard to feel like you’re not enjoying life because everything’s a fight. And so for now……I take meds because its what I believe I need. In some ways, even taking the meds feels like I’m “failing”. Like I should be trying harder and yet……..I’m “tried” out; and going this route…..it enables me to still be available for my family. Which is so necessary………although, I’d love to check out……not forever……just for a moment….maybe to catch my breath.

It’s what all mom’s hope for, right?

Details

Hello Friends,

We are in the final countdown of the last days of Angelica’s Treatment.

It’s so exciting….not counting today, it’s 5 days left. YAHOO!

Some of you may have heard and I’m so sorry if you have not, but we are celebrating on Sunday September 30th from 2-4pm at the cafeteria at Walnut Grove Secondary School.

You can let us know if you need directions, but we’d love to have you join us as we celebrate the very last day of Geli’s Treatment and the first day of the rest of her life…..

What an amazing day. We are so looking forward to it.

We had a HUGE day at the hospital yesterday and I’m still recovering from it all. We left our house at 9am and didn’t walk back in the door until 5:30pm. It was all good news and we are so looking forward to wrapping this phase of our life up and starting to move forward in a life without daily chemo. We are looking forward to building strength and regaining that which was lost…..to just moving forward instead of feeling stuck.

We’d love to have you join us.

We’ll have coffee and cake available so if you can, stop by, we’d love to see all of you who have supported us and helped to carry us through these past 2.5 years…..it’s been quite the journey and we are so thankful that you’ve been there along the way helping us to keep moving forward.

Let me know if you need more details…..look forward to seeing you.

24

So, it’s been a while since I’ve done an update on where Geli is at.

It’s been a GREAT summer and we are having a great kick off to the fall, too.

Angelica is officially finished cancer treatment as of September 30th. She wakes up on Sunday morning takes her last dose and BAM!!!!!! just like that…..no more chemo.

She still does have one more hospital visit that we fit in on Monday September the 24th. It should be a super quick “in and out” of the Oncology Dept, BUT…….she is supposed to see the physiotherapist BEFORE her 11:30am chemo appt and then she has an appt with the Orthopedic Surgeon just to assess where she’s at….which we are thinking is in a much better place than she’s been in over a year…….YAH!

This summer was great. Geli has gotten stronger and stronger. She was walking (not for very long) with quite a wobble in her gait and now there is almost no wobble. She still needs to work on some stiffness and shortness in some of her muscles but it is exciting to see HOW FAR SHE’S COME!

She was able to swim and swim and swim and swim, while we were up at the Lake and even went knee boarding a number of times with minimal muscular soreness the next day. She is walking around our community to visit friends, shop or buy junk food at the local convenience store. It is SO nice to see her “just being normal”.

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Last school year, there was quite a bit of talk about enrolling her to home school for Grade 10 as she was in so much pain and we were not sure where she was going to be at this year – physically, mentally and emotionally. We even signed her up at the same school that the two boys are at, but then she decided to stay at her local school and it’s been a great couple of days for her. People have been so complimentary regarding how she looks physically and there have even been a number of double takes as people recognize her and almost always there is a comment about how AMAZING she looks or how long her hair is….and honestly….she looks amazing.

At our next appointment, they will send off the request to have her VAD (the port that goes into her heart that she gets the chemo into) removed and then……and then….

Well, Angelica will still be going in monthly for check ups for the next year. Then it will space out to 3 months, and 6 months and then once a year. She will stay on the prophylactic antibiotic for the next three months and basically as of January….Angelica will be medicine free and after she gets the VAD out, if she gets a fever……I can just treat her like a normal kid and give her some Tylenol and send her to bed with some chicken noodle soup – as opposed to stressing and heading into the hospital.

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We have been throwing around the idea of having a get together, maybe at a local park or something, to celebrate the end of this season and the beginning of the rest of her life……

We will keep you posted if and when……and we’d love to have everyone who has prayed and supported us over this time join us, if we manage to pull something together.

Thanks again for all your support. We appreciate you more than you could ever imagine……

Looking Back

This is a post from this day last year. Just reading the post I can feel all the emotions from a year ago. It’s hard to believe that it was only a year ago. It seems like AGES AND AGES ago…..we’ve come so far……

Exhaustion and Low Counts
Posted on June 8, 2011 by Patti

I’m tired.

I’ve started exercising again and while I know in my head, that in just a very short time, I will have more energy….at this exact moment I’m SO tired!

My legs hurt. My stomach hurts. My shoulders hurt. Stupid muscles in my neck that i didn’t even know that I had hurt! I hurt!

I know that the end result will be a definite gain in my life, but for the immediate…I’m tired!

Other than that, I’m doing well…..so enough about me.

Angelica has done 2 out of the 4 doses of chemo for this week. She went in yesterday and based on how well she seemed on Monday with her friends, we were expecting a short in and out. She had an LP and after that she needs to lay down for about a hour, but they could give her the chemo and so while her appointment was for 8:30am, I expected them home before noon.

The whole morning just kind of went screwy. The traffic was BRUTAL and it took them over an hour and a half to get in. Then is took a bit for her to get in for the LP. While she was sleeping off the sedative, Jon got the results of the blood work and her Hemoglobin was at a 72. This was a fair drop from the 95 that it was on Friday. Typically around a 70, Geli has higher blood pressure, a faster heart rate, feels like she just cannot catch her breath, has a hard time moving around and definitely has trouble going up or down stairs. Aside from her heart rate being slightly elevated, she was doing fine, but….seeing as her counts are just heading down, down, DOWN…. They ordered a transfusion and there began one of the LONG clinic days. The blood didn’t even get to the clinic until after 1pm and they didn’t get her hooked up until 1:30pm. It takes about 3 hours for the blood to run and so they didn’t even leave the clinic until 5:30pm and then there was the hours drive home.

If we are prepared for a long day it’s less stressful than when we are kind of blindsided with it.

All of her counts are headed south. There is a good chance that she will have low to NO infection fighting ability for most of the next 3 weeks. This is a bit scarey and I’m asking for prayer to really cover Geli and us during this time.

Obviously, we can handle anything that we have to…including a long hospital stay, but we don’t want to have to.

We’d just like for Angelica to stay healthy and strong.

There is a good chance that she’ll need another transfusion either Friday or Tuesday and she’ll most definitely need platelets before she gets the intramuscular shots on Tuesday. It looks like we’re in for a few long clinic days over the next little while.

We’re looking at the finish end and just needing the strength to stay strong until this “intensive” phase of treatment is over.

This entry was posted in Cancer Sucks, exercise, Gelica. Bookmark the permalink. Edit

Trying to Hold On

It’s been a long two years and I’m finding that I’m at the end of myself.

I’m tired. I’m exhausted. It’s more than just an “I have a 2 year old who wakes up at 5am” tired….

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Napping yesterday with Judah

It’s more of an “I have no idea how I’m still standing but I must carry on……” kind of tired.

I have no energy to call anyone or reach out to anyone or respond to e-mails….in fact, I am spending a ridiculous amount of energy just attempting to put these blog posts out there.

I want to be able to “DO” things, but I have no reserves left to draw from.

There are things that bring me life and although there is a small part of me that desperately wants to do these things……I don’t even really want to do them….and yet I do, in the hopes that I will be able to remind myself of who I was before “ALL OF THIS” happened.

And so, I make soap……which exhausts me and requires that Jon be there to walk me through it because I’m scared that I’ll make a mistake, forget something and wreck it. Something so stupid as following directions and mixing ingredients….much like making a cake……wrecks me. And says a lot to me about where I am at….

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And so I blog, even though I have to think and think and think and then delete; because what I’ve written isn’t what I want to say…….and that makes me feel so stupid because normally I LOVE WORDS. I love to be able to use words to share and encourage and inspire and even something that is normally first nature for me, requires a ton of effort…..and that says a lot to me about where I am at…..

I’ve been seeing a counselor for a while now because I want to feel better and in some ways I am, but it also feels like the more that I acknowledge how tough this journey has been and is….and the more we walk away from the intensely stressful times, the more difficult it is to hold myself together and continue carrying on. It’s like I’ve been living on adrenaline for the past two years and that alone is exhausting. The stress has done a number on me both physically and mentally.

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Someone’s having a sick day today. Middle of the night barfing sessions are NOT cool.

About 2 weeks ago, I said to Jon that I really needed to get away. Like, for my overall well being, I needed to get away. I’ve not wanted to “go away” because there were too many things that were unstable and the kids needed us……but I’m in a place where if I don’t get away….I feel like I will break down beyond what I can continue to hold together. I already feel incredibly broken.

I feel like, if I were a wagon….I used to be useful. I could carry many things and heavy things and now…..now I have a giant crack running through me and my wheels are broken and the straps and connectors that hold me to the “life” that is pulling me forward are so compromised. I feel like I’m sitting some place not useful or good for anything. And to be honest….it’s a horrible feeling. It’s a horrible feeling to feel like you HAVE to do things and to physically make yourself do things, like cleaning and laundry and meals and yet to not have the energy to do them. I don’t mean that in a flippant way, but literally….every time I do something, I am taking more and more out of my very being and there is so little left…..

I feel like this sounds so dramatic, and in someways I worry that it may come across the wrong way and yet…..to be honest, I don’t even have the energy to really get a good “worry” going on. Which in some ways, I guess is good, because we shouldn’t worry, but in other ways, it says a lot to me just about how rough of shape I am in because although I shouldn’t admit this….I have been a champion worrier in the past…….

Jon has booked some time away for us. Just he and I are going to Cabo at the beginning of July. It’s officially less than 30 days until we leave. I am so looking forward to a week of nothing. No responsibilities….no cooking….no cleaning….no one wanting me or needing me or taking from me….

I’m planning on sleeping and sleeping and sleeping some more. Sitting in the sun. Eating. I will probably cry….grieving all we’ve lost. And then I will come home; and I hope & pray that I will have a bit more to give, because I have ones who require it of me.

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Waking Up Happy

The Countdown is On…

This past Monday we were in at BC Children’s for another monthly chemo appointment. As of today, Angelica has 4 more monthly chemo appointments left until she is finished taking chemo and only 1 of those appointments will have a sedation procedure. This is SO exciting.

There is not that much that is new or interesting about the actual chemo appointment itself! Angelica goes in. They admit her and draw her blood. They give her the chemotherapy and then we see a Dr. and go home. At this point, as long as I don’t think too closely about the poison that they are giving her, it’s all very routine. I know that it’s a necessary evil and I’m so thankful that we are here and can get the medical help, but it’s still tough…..and that’s never changed from the day that she was diagnosed until now….

What’s been different about the last few appointments has been the issues regarding the bones. The news of Avascular Necrosis/Osteonecrosis has been tough. Dealing with how much constant pain Geli was in was so hard. She had a hard time walking, moving, dressing, doing her hair, bathing……Life was pretty tough and every report we were getting was pretty much preparing us that life would pretty much be like this and possible worse…..

Things started to change after our appointment with Dr. Brown the Pediatric Surgeon at BC Children’s. He gave us news that we received as god news….as positive news and in the middle of all the crap…it’s what we needed to hear.

Angelica is doing so much better. It’s not all butterflies and roses, but she is in less pain. She’s tired and her muscles are sore, but she is working SO HARD!

Geli is doing about an hour and half of physio a day…….on her own…..or mostly on her own…

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It’s pretty incredible. She is doing exercises 3 times a day – morning, after school and before bed. It’s making a HUGE difference. Instead of walking around like someone who is 90 years old, she is walking and standing more like a teenager. She is standing straighter and walking straighter. While there is still a bit of a wobble in her step, she looks AMAZING!

It’s exciting to see how far she’s come. Sometimes, it’s hard because she can’t see the change, but to us, looking at her and seeing what she can do now that she couldn’t do a month ago….the changes are astounding. For example, she couldn’t stand up in the kitchen to help with dinner or dishes for 15 minutes without being in pain and so tired. Now, she can do at least an hour. On Monday, she had the sedation procedure with the chemo into her spinal fluid (a Lumbar Puncture) and there has not been one day in the past 2 years that she has done anything other than lay around on an LP day. On Monday, she wanted to walk up to the store a few blocks away from our house to get something that she really wanted for dinner. It blew me away. So SO much different than a month ago……she also has SO MUCH MORE range of motion in her shoulder and elbow and it’s making a difference in the daily living things that she is able to do, like reaching for things up on shelves in the kitchen and doing her own hair.

She still requires help, but all of this change…..it’s only after ONE MONTH of exercise…..The physiotherapist at the hospital said she was doing incredible and our nurse COULD NOT BELIEVE how amazing she looked even all groggy after having the LP. She looked healthy and happy….in fact, more than a few nurses mentioned how great she looked.

It’s so great to see positive change and forward movement in this situation. We have our next appointment with the Orthopedic Surgeon on Tuesday June 14th….I’m looking forward to Geli going in and being in better shape than she was the last time.

One other AMAZING bit of news, is that the Physiotherapist at BC Children’s suggested that Angelica go THERAPEUTIC RIDING…..as in HORSE RIDING. Any of you who know Geli, know that she has been in love with horses for as long as we can remember. I have lost count of the number of horse calenders, horse bedding and other horse paraphernalia that Angelica has collected or wanted to collect over the years. To say that she was a horse fanatic is putting it mildly. Unfortunately, horseback riding has not been something that we’ve been able to do, but it has been something that Geli has wanted to do forever.

To have the Physio suggest that as another form of physio that Geli could go riding…..well, it’s pretty huge. Just talk to Geli about it and see the smile on her face when she talks about it….she has this amazing smile that just lights up her WHOLE ENTIRE FACE. She is SO excited! We’ve contacted the stable that does Therapeutic riding out here in Langley and have sent out referral forms to her Dr.s to get them filled out and as of last night we received them back so now we forward them to the stable and then set up a time and …………she starts riding.

What an amazing opportunity that is so perfectly picked just for her. What a blessing! We can see God’s hand in this.

There are other emotional side effects from this whole journey that we are working through and it can be tough at times, but there are a lot of things that are going so well. We keep praying and believing for miracles for Angelica’s physical body. It is so encouraging to be at a place where she rarely feels pain as opposed to the constant pain that she was in.

Thank you for your prayers, your encouragement, for your love, for your support. We couldn’t have done this or carry on without your support. We are so grateful to all of you.