Day 12
“I know God won’t give me anything I can’t handle, I just wish He didn’t trust me so much”
- Mother Teresa
I’m not up for posting much tonight. I have had another hard day. My platelets were at 4,000 this morning and they waited all day for “matched platelets” to come in but they didn’t. They received a bag of platelets that they considered “safe” for me and I was very optimistic that I would see a boost from them. The transfusion went well but I had a mild reaction half-way through (bad chills) which a muscle relaxer took care of. Unfortunatley the blood tests showed that these platelets actually dropped my count to 3,000. The matched platelets are en route to arrive tonight and I will receive them as soon as they get here. Again the nurses and doctors are optimistic that these will give me a big boost, but I can’t lie. After 3 failed transfusions I am scared and discouraged. This was supposed to be an easy part of the process. Never did I envision that giving me blood transfusions would cause such problems. With my platelets this low I can’t really leave my room or do anything because I am at such high risk for internal bleeding. The slightest bump could be extremely dangerous to me.
I am trying to remain optimistic. Brian is supposed to bring Ty tomorrow and I would like to have my platelets over 10,000 before he gets here. I also have to have a CT scan done of my stomach to determine why I am having so much pain. I don’t think that is anything to worry about – they just need to identify the issue so they know which medicine to give me. It is most likely just a side effect of the chemo.
I’m doing a lot of meditating and visualization tonight. I’ve been doing that already but I think I have to dig deeper. This is really the hard part. I also know this is only the second week of a very long road ahead of me and now is not the time to lose faith. It will work out, we just all have to believe that.
Jess -
Don’t lose faith now when you need it most. Cancer treatment, chemo and the like, seems to usually include some bumps in the road and unexpected challenges. Roll with the punches and keep focused on your goal to beat this.
Despite the transfusion problems, remember that you are still ahead of the game because you recognized that something was wrong and you got this diagnosed quickly. If you hadn’t done that, you’d still have the leukemia brewing inside you.
We are all thinking about you and pulling for you.
Chip
Hey you – nurses can make or break you. I remember when i was hospitalized gor 4 months in abed how my day would swing hard depending on which nurse I had and what their tone was like, did they look me in the eye and really want to know how I was feeling, act busy and annoyed, make me wait for 1 hour for some gosh-darn ice water or for a pain medication, complain about the front desk calling them too often, did they sound annoyed when I buzzed them to make sure they hadn’t forgotten to order my pain meds or send a message to my doctor who was changing all the time because of their shifts and rounds. I felt so out of control, I had NO CONTROL over even the smallest things like ice, clean washclothes, sleeping a full night with a tech taking my temperature or blood pressure blood pressure, doctors starting their rounds at 5 am and waking me up – I usually slept most sound from 3-5 am, nurses changing shifts at 7am so you knew not to expect anything from them until atleast 8:30. Hospital food service dropping your food tray off like you’re a prisoner and they don’t care to provide you with healthy, tasty or interesting food. For goodness sakes you’re in the hospital you would think part of their mission would be not to kill you with plastic food, but no they don’t even try to make that stuff nutritional or tasty. Getting the wrong food delivered to you when you’ve been dreaming about a certain something that you could just get from you fridge, only if you were at home. Soft sheets and blankets, a comfortable mattress, fresh air and sunshine, staring at your children sleeping, touching them, smelling their hair after bathtime, a clean warm bathrobe, a glass of wine after a long day, knowing exactly where your children are, that they are safe, if they bathed and are wearing the comfy pair of jammies you know they love and you picked out just for them, are they sleeping soundly, is their room too cold or too warm? Driving a car, windows down with a great summer tune on the radio, grocery shopping, privacy, your own clean clothes, pulling out your pretty summer clothes, sleeping next to your snoring husband, knowing that everything is right with the world because the people you love most are all accounted for and in the house, being pain free, no IVs, no blood draws, no fear, no restlessness, being able to focus on reading a whole book or watching a whole movie. Being able to focus at all. Being at home in your own space with your children, making your own choices, feeling in control of your life, your body, your childrenHey you – nurses can make or break you. I remember how my day would swing hard depending on which nurse I had and what their tone was like, did they look me in the eye and really want to know how I was feeling, act busy and annoyed, make me wait for 1 hour for some gosh-darn water, complain about the front desk calling them, did they sound annoyed when I buzzed them to make sure they hadn’t forgotten to order my pain meds. I felt so out of control, No Control over even the smallest things like ice, clean washclothes, sleeping a full night with a tech taking your blood pressure, doctors starting their rounds at 5 am, nurses changing shifts at 7am so you knew not to expect anything from them until atleast 8:30. Hospital food service dropping your food tray off like you’re a prisoner and they don’t care to provide you with healthy, tasty or interesting food. Getting the wrong food delivered to you when you’ve been dreaming about a certain something that you could just get from you fridge, only if you were at home. Soft sheets and blankets, comfortable mattress, fresh air and sunshine, staring at your children sleeping, touching them, smelling their hair after bathtime, a clean warm bathrobe, a glass of wine after a long day, knowing exactly where your children are and if they bathed and are sleeping soundly, is their room too cold or too warm? Driving a car, windows down with a great summer tune on the radio, grocery shopping, privacy, your own clean clothes, sleeping next to your snoring husband, no pain, no fear, no restlessness, being able to focus on reading a whole book or watching a whole movie. Being at home in your own space with your children, making your own choices, feeling in control of your life, your body, your children. All things we take for granted when you’re not trapped in a hospital. Hang in there Jess. That first walk out of the hospital on your way home IS going to happen, the sun IS going to hit your face and you WILL get in that car and drive to your own private house and be with Ty, Kieran and Brian soon. Do you need people to donate blood platelets? I’m a regular donor and O+ and have been told my donations are used for pediatric cases because of “something something” rare with my antibodies is what’s needed but hard to find. I really should know what the something something” is. Anyway let me know if you need blood donors for your transfusions, I’ll give you as much as I can!! Love ‘ya and think about you lots. If you ever want to talk, (410) 322-9737
Sorry Jess! It’s late and I was typing away and cut and pasted my notes to you in duplicate. If you want to delete my last post this is what I meant to write….
Hey you – nurses can make or break you. I remember when i was hospitalized gor 4 months in abed how my day would swing hard depending on which nurse I had and what their tone was like, did they look me in the eye and really want to know how I was feeling, act busy and annoyed, make me wait for 1 hour for some gosh-darn ice water or for a pain medication, complain about the front desk calling them too often, did they sound annoyed when I buzzed them to make sure they hadn’t forgotten to order my pain meds or send a message to my doctor who was changing all the time because of their shifts and rounds. I felt so out of control, I had NO CONTROL over even the smallest things like ice, clean washclothes, sleeping a full night with a tech taking my temperature or blood pressure blood pressure, doctors starting their rounds at 5 am and waking me up – I usually slept most sound from 3-5 am, nurses changing shifts at 7am so you knew not to expect anything from them until atleast 8:30. Hospital food service dropping your food tray off like you’re a prisoner and they don’t care to provide you with healthy, tasty or interesting food. For goodness sakes you’re in the hospital you would think part of their mission would be not to kill you with plastic food, but no they don’t even try to make that stuff nutritional or tasty. Getting the wrong food delivered to you when you’ve been dreaming about a certain something that you could just get from you fridge, only if you were at home. Soft sheets and blankets, a comfortable mattress, fresh air and sunshine, staring at your children sleeping, touching them, smelling their hair after bathtime, a clean warm bathrobe, a glass of wine after a long day, knowing exactly where your children are, that they are safe, if they bathed and are wearing the comfy pair of jammies you know they love and you picked out just for them, are they sleeping soundly, is their room too cold or too warm? Driving a car, windows down with a great summer tune on the radio, grocery shopping, privacy, your own clean clothes, pulling out your pretty summer clothes, sleeping next to your snoring husband, knowing that everything is right with the world because the people you love most are all accounted for and in the house, being pain free, no IVs, no blood draws, no fear, no restlessness, being able to focus on reading a whole book or watching a whole movie. Being able to focus at all. Being at home in your own space with your children, making your own choices, feeling in control of your life, your body, your children. All things we take for granted when you’re not trapped in a hospital. Hang in there Jess. That first walk out of the hospital on your way home IS going to happen, the sun IS going to hit your face and you WILL get in that car and drive to your own private house and be with Ty, Kieran and Brian soon. Do you need people to donate blood platelets? I’m a regular donor and O+ and have been told my donations are used for pediatric cases because of “something something” rare with my antibodies is what’s needed but hard to find. I really should know what the something something” is. Anyway let me know if you need blood donors for your transfusions, I’ll give you as much as I can!! Love ‘ya and think about you lots. If you ever want to talk, (410) 322-9737.
Don’t worry guys. I came down tonight and got Stephanie to watch the kids. I will be by her side tonight holding her hand and helping her through this particular struggle.
Jess-
XXXXXOOOOOOO
Gina, Tony, Maya, and Brooke
Jess–
My dad also went through many scary phases in his recovery from the heart surgery that I told you about. Keep believing in your strength and the wisdom of your body.
Love,
Gina
@ Gina – I like that, the wisdom of our bodies, so true.
We all love you Jess!!!!!! Xoxoxoxo
Jess,
try and stay possitibe! I know it must be hard! You are in my thoughts and prays! Hopefully Tys visit with lift your spirits!
There are brighter days ahead- Keep believing! Glad to hear you were were able to have Brian with you last night. Thinking of you and giving lots of extra TLC to my patient and family today in light of your not so great experiences
Hi Jess,
We’re keeping you in our thoughts and prayers. Yes, this is just a “bump” in the road. When you get the good platelet match, you will feel so much better. I’m sure when you get to visit with Ty, you will feel amazingly better.
Love,
Debbie, Steve, Marissa & Evan
***********UPDATE*********
GOOD NEWS!!! They gave her a infusion at 3am (still not the “perfect” match) and her platelets went up to 42k. She just got finished with the CT scan (for her stomach pain) and should have the results soon.
Also, the “perfect” match of platelets is here and being prepped for another mid-afternoon infusion. Once they have done that she should be able to get the pic line again, which means no more IVs/needles.
Oh, so good to hear Brian’s update! Hang on there, Jess. It was a scary bump but you made it through! Keep punching, one at a time…
I just read some words of wisdom that I wanted to pass along to you:
“There is no option for failure, there is no time to waste wondering why me, there is no point in looking back. The ONLY thing that matters is that I MUST overcome this and I WILL.”
And WHO said that?? You, of course. Go get’em.
P