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Strength In the Moment

Updates for family and friends following my journey with aplastic anemia

Heartbreak

My heart feels like it is slowly breaking as I mentally prepare for being in the hospital for at least a month. I have trouble listening to Fiona crying when I have to go to the bedroom to take medications or when we left for our date this past weekend. She is so sad and can’t understand why I disappear. I think about what it will be like when I leave and don’t come back for a month or more. How do I explain this to her? How will she understand that I love her and I am doing this so I can be with my family for a long time?

She will have both grandmas and Daddy around and we will try to Skype every day. I’m told if I am doing well enough, she can visit me in the family room and then we will attempt visits twice a week.

I just can’t imagine going for days and weeks without her. When she wakes up in the morning, she smiles because she is so happy to see me. We read books and she sits on my lap. When we go for walks and she puts her hand up for me to hold it and when she trusts me to keep her from falling, my heart just overflows with love for her. Her laugh is precious and her curiosity and growth make me so proud.

I don’t know how to explain the love I feel for her but I feel so sad that she won’t understand why her mama is just suddenly gone. What if we are never as close again as we are now? What if she doesn’t demand to sit in my lap and make me read stories to her? What if she is shy to be around me and doesn’t always have to be next to me? What if she doesn’t trust me to keep her from falling? What if she can’t fall asleep as I sing to her because my voice is foreign?

I know with Skype and with the potential visits it isn’t as dire as I feel like it is. But my heart can’t seem to get in line with that and I cry every night. When things are quiet and she is napping or in bed for the night, that’s when I have time to think about this and I fall apart. I just wish there was a way to explain it to her.

I am so grateful Denise will be here to be her caregiver. I trust her Grandma to care for her and love her and I know she  will be safe and happy.

I just wish we were facing different circumstances. I wish none of this was happening and in my weakest moments I ask why this is happening and think about how unfair this all is. Without Zack’s steadfast heart and his comfort I don’t know how I would keep myself going. I love my family so deeply and they are the only way I can find strength to do this. I know we will get through this but it is so hard and sometimes I am so tired. I wish I felt stronger.

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Donor Found!

Hi Everyone,

It’s been a while since I let you all know I would be getting a transplant. The goal had been to do the transplant late August or early September. Well, it takes time to find a donor and figure out insurance and get all our ducks in a row.

They had several samples in the lab for me and found a ten point match! That is the best possible match and is really good news. I don’t get to know anything about the donor but I’m so grateful to whoever will be my match. Being a donor isn’t a huge risk but saves people’s lives. My donor will be doing something completely life changing for me and you could do the same for other people like me. If you’ve ever considered it, Be The Match can be contacted and all they do is get a cheek swab and add you to the registry. Their website is BeTheMatch.org .

Anyway, things are getting Real. With each new piece of information, a new set of emotions arises. On the one hand, I feel like there is finally a light at the end of the tunnel. After one and a half years of visits 2-3 times a week to various infusion clinics, we are almost there.

On the other hand I am really scared. I have to do ATG again prior to the transplant and I will also do chemo. I’m legitimately afraid of the ATG since I got ARDS last time and nearly died. On the less serious side, I’m afraid to see what I look like with no hair…

The process now is that they discuss a range of dates for when to do the transplant. They then send these dates to the donor to see if it will work. There’s a lot of medical testing on both sides to make sure we are both healthy enough to proceed. I’ll repeat a lung function test – that’s the one we worry about the most and have heart and brain scans.

While I’m really glad things are finally moving forward, it also means the time is coming when I will be away from my husband and Fiona for at least a month. This is completely heartbreaking. Fiona is still in the phase where she needs her mama for everything and she isn’t old enough to understand why I’m going to disappear. We are hoping to Skype every night and they do have a family room we can use if they clear me for it. It is possible I could see her and Zack twice a week. I have no idea what I should do to prepare her for this. There aren’t a lot of books or activities geared toward her age. Maybe that is because she will be too young to remember. I hope so. I know I have to go through this so that I can have a good life with my family but it’s also just really really hard.

I’ve also been dealing with some PTSD from the ARDS. Apparently this is very common and it’s been worse since I found out for sure the transplant was happening. I don’t know what else to say about it but that I’m remembering some of my dreams as I woke up from the coma and some of them were pretty disturbing. I try to keep my fear away but it’s hard not to be afraid of everything sometimes.

Some of my fears are pretty reasonably about getting an infection after the transplant. Once I am home we will have to follow pretty strict measures to prevent me from getting sick. Everyone who is acting as a caregiver will have to take a class and we have to purchase a lot of things to help keep our house germ free for 100 days. To that end, my friends have started a fundraiser to help with some of the costs we have. The funds will help with hiring cleaners, getting the car detailed, and maintaining a clean and safe environment for me. Funds will also help supplement the cost of flights for some of our caregivers. If you feel you are able to donate, you can do so here. Please note that they will ask you for a suggested donation to the website. This is not a required fee to donate and can be changed to $0.00. If you have questions or concerns, of course please contact  me and I will talk to my friends and try to help.

Thank you for continuing to follow me and my family and our journey through aplastic anemia.

Update

This update is long overdue. We have determined that my initial ATG did not work. I still receive platelet transfusions twice a week and red blood transfusion every 1-2 weeks. After 7 months I should be needing far fewer transfusions and my counts should be obviously improving. We’ve seen small improvements here and there but nothing significant enough to hope or expect anything to truly get better. I am constantly exhausted and mostly spend my time focused on caring for Fiona.

What this means is that I am now slotted to have a bone marrow transplant at the end of August or early September depending on how quickly we can get everything together.

I’m beyond terrified especially after getting the ARDS from just the ATG last time. I will receive ATG again along with radiation prior to the transplant and then afterwards, I will receive small doses of chemo to prevent graft vs. host.

I will be in the hospital for four weeks and may only get to see Fiona  a few times, if that. This is heartbreaking but I am trying to look at the big picture (I’m sure I will post more about this as we get closer and as it is happening). Then, once I am released, I go to clinic three times a week for the foreseeable future. The first 100 days are critical in terms of infection risk so I will basically be quarantined in my house. I will be on a low bacteria diet and I don’t even know how much I will be allowed outside. I also can’t be Fiona’s primary caregiver for especially the early parts of this time so my Mother-in-Law is coming out here to help. I’m so grateful to her. We have gotten through so much already with her help and I know Fiona will love seeing her.

I’m not really sure of much else right now. There is a lot to sort out and do before I can proceed with a transplant and they are working on looking for donors right now. I pray that whoever they find is still willing and available.

I’m so scared and my saving grace is that Fiona’s needs are still so moment to moment that at least while she is awake, I don’t have time to dwell. Zack has been such a strong support too, I love him so much. We could use support and love and encouragement as much as possible from people as we go through this scary time.

 

Day 4 of ATG

I was beyond exhausted last night through today so didn’t post about last night’s ATG. It was my final round and it has left me very weak. I also have continued to have itchiness issues and my skin looks even worse than it did. ATG runs from about midnight or 1 to 8:30 or 9:00am. As treatments have continued, the more it seems I have at least some allergic response to it (though not enough to discontinue treatment).

I feel like it is finally hitting all of us just how sick I am. I am extremely shaky and even once I am discharged, I will not be able to be Fiona’s primary caretaker right away. That cost makes me sad. I have missed seeing her so much but at least I get to see her for a few hours in the hospital and once I am home, I can at least spend more time with her.

One of the most frustrating things is that I’m having a very minimal response to platelet transfusions. My platelets were 3 today and immediately following a transfusion, I only jumped to 17. This has happened multiple times now. My other test is run at midnight and by then, my platelets are back down to 2 or 3. This means platelets are only lasting about a half day in my system. Compared to the times I was able to hold platelets for a week or more, this feels pretty discouraging. That said, the ATG treatment can cause thrombocytopenia which is just a fancy word for lowered platelets. This means for the foreseeable future, I will require daily platelet transfusions. It’s looking like I may even require daily red blood transfusions as well. I’ll continue to be weak and shaky and I don’t even know if my petechiae will have a chance to heal before I accumulate more.

In other news, I can’t even report on my white count and neutrophil levels because in that respect, the ATG has done it’s job by totally killing off my white cells. It is registering so low in their tests that there’s nothing the machines can report. This means I’ll also be giving myself daily injections to try to boost my white counts.

I don’t know exactly when I will be discharged. We think it will depend how weak I am, how long I hold blood products, and my confidence in being able to move around. Being on a second story apartment may prove difficult and beyond the physical weakness and exhaustion, the medications I am on cause a host of side effects from confusion and deep bone pain to high blood sugar and blood pressure. Whenever I stand up to try to do something, I need help walking and oddly, sound becomes very muffled for me. I get dizzy and I am very slow.

I know many people have offered to come visit and help but with literally no white count, I think we can’t risk it for now. If I haven’t gotten back to you yet, I’m sorry. I definitely will but I fall asleep in the middle of writing this blog and talking to people in person (and even during my regular check-ups like getting my BP and temperature). So, honestly, much communication seems a bit beyond my grasp at the moment.

Thanks for keeping us in your thoughts and prayers and staying up to date on what is happening.

Day 3

I will start with the good news. Today I did not have rigors because they took better precautionary measures to try to prevent it. I was shaky and lightheaded today but overall did much better on that front. Unfortunately, whenever I stand up to do anything, I get faint and shaky. The worst of this happened while my family was here. I was organizing my things when I had to sit down and I had what felt like rigors but they think it must have been something else because it happened so far away from my ATG treatment.

In the bad news category, my pain is still through the roof. I’m pretty solidly anywhere between an 8 and a 10. I think this is due in part to the rigors yesterday and also because I’ve been so weak today that I haven’t done much walking and the bed, while nice enough, really doesn’t do what I need it to with my EDS.

In addition to this, I seem to only be holding platelets and red blood for a day, sometimes even less. The ATG could be the cause of the platelet issues but we don’t know for sure. I had gotten up to 96 platelets my first night, 15 platelets my second, and by 4pm today I was down to 2. I knew something was wrong because I’ve also been having severe itchiness and my body looks like some sort of morbid road map or something from a horror movie. Some of the petechiae have even bled. We do think the itching is being caused by the ATG and it covers my face, arms, chest, stomach, and legs. I have some pictures if people are curious.

My hemoglobin was 7.8ish yesterday. I received blood sometime that day and yet my hemoglobin fell again all the way to 6.8ish. This is the lowest I’ve ever been. Despite this, and despite the fact that the protocols my original doctor has on file say I should receive 2 units whenever my hemoglobin hits 8.1, they follow a different set of rules here so I only ever get one unit at a time and at a lower level. So far that doesn’t seem nearly as effective. My blood levels will be checked again at midnight tonight and I received plateletes and red blood cells today. So we will see where I am.

UPDATE: After one unit of blood and one unit of platelets, my hemoglobin is up to 7.6 and my platelets are 16. They only have me scheduled to get another blood draw at midnight but I’ll probably push for a midday draw since the emerging pattern is that I require blood and platelets on a daily basis.

My blood pressure has been vacillating between being too high and being too low so they’ve been pumping liquids into me pretty much nonstop. I’ve gained a bunch of weight because of it which is discouraging but they are saying it should drop down pretty quickly once I’m out of the hospital and no longer receiving fluids. Problematically, too, the sheer quantity of fluids has made it difficult and painful for me to breath very deeply and I can’t eat much at a time.

They’ve given me something to help me sleep so I’ll leave it at that for tonight. If you are curious about pictures of the petechiae, let me know! I don’t want to put it in the blog post in case they add the picture to my crosspost to Facebook (it doesn’t seem like the  type of thing people would like to jump out at them).

We are about to start my third dose of ATG – wish me luck!

Day 2

I am beyond exhausted so my update will be short. I finished my first ATG treatment from midnight Saturday to 7:30am Sunday. They are giving me a lot of steroids so I was pretty wired and only slept for about 2 interrupted hours. At the very end of the treatment and directly after finishing, I developed terrible rigors. In my case this was accompanied by chills at the beginning.

I spent hours shivering and shaking as we tried one medicine after another to get it under control. I was given more steroids, benadryl, and a whole host of medications that eventually helped but left me groggy and out of it for most of the day. The rigors also tightened all of my muscles terribly and my pain has skyrocketed to well beyond a 10. It has just made managing my pain more difficult and I’m left confused and groggy after some of the treatments they’ve used. I also ended up with a fever of 103 which can be another side effect of the ATG. That is under control now but we don’t know what is going to happen when I start the ATG tonight.

Today was one of the worst days I’ve experienced (aside from labor!). I really hope that my reactions lessens with time. I meant to finish this post before starting my next round but I’m onto my second round and it is taking a lot longer in the hopes that I will do better but they just increased the rate and I’m starting to get itchy everywhere. It is difficult to tell if I have hives because any time I scratch, a new petechiae rash appears. My platelets rose all the way to 96K after two units of platelets midnight Saturday but by last night they were back down to 15K so not only did the petechiae I had before not get a chance to really heal but now I’m getting more and more of it along with random bruising along my veins.

Day 1

Today is a hard day. I arrived at OHSU around noon. So far I’ve had blood work done and one unit of platelets. They’ve also done a skin test to see if I would have an allergic reaction to the ATG. I’ve been waiting forever for a second unit of platelets and then will start the ATG after that which takes at least 4-6 hours and they will be checking my vitals throughout the night. I had hoped to get some rest since I’m not watching Fiona through the night but at least tonight, that won’t be the case.

My platelets were 1K today. This is the lowest I’ve ever been. My hemoglobin is 7.8 which is nearly the lowest and my neutrophil level is .06 (also the lowest I’ve ever been). I’ve been really discouraged by this in part because they are not really wanting me to have visitors outside of my family – especially people with kids in daycare or school. It also feels like my body is just giving up or something which is ridiculous, of course.

With my platelets so low, I have terrible petechiae everywhere and even with one unit of platelets in my system it seems to be getting worse. I also have bruising all over my body. I have huge blood blisters in my mouth and on my lips that are extremely painful and in some cases bleeding. My gums are also bleeding without doing anything to cause it. I’m not allowed to floss or brush my teeth or even use mouthwash. I’ve had some cavities but no dentist wants to touch me with a ten foot pole until my aplastic anemia is under control so I don’t know what’s going to happen with my teeth and now all of a sudden my jaw hurts a lot. When showering, I cannot shave because I could cut myself and the bleeding won’t stop. I can’t use a washcloth because it will give me more petechiae. I can’t use any type of scrubs or abrasive soaps. I have to shower every day with a plastic sleeve over my picc line (today I used a grocery bag and press ‘n seal at home!) and while in the hospital, I will then have to follow a special  cleansing protocol after I shower and change all of the bedding in my room, wear different clothing, etc.

I’m also struggling because tonight is the first night I’m away from Fiona. She was here for only a few hours today and probably I will only see her for a few hours each day because we are trying to keep her on a good nap and sleep schedule. I miss her already. Even though I have to wake up several times a night to feed her, I am sad to be away from home. Unfortunately, Zack will have to work while I’m here and so I won’t get to see him much either. I just want to be with my family.

I am sure things will look brighter tomorrow. I have a nice room and a pretty view. My friends and family are so supportive and kind. I know it will be okay but today is hard.

ATG

Well, good news (I suppose relatively speaking). The bone marrow biopsy has come back and there are no new surprises. No cancer, no other complicated diseases. This means I can begin ATG.

I got the biopsy on Wednesday. They used a drill this time which was a lot less painful and went much more quickly. If I ever need another one, I’m requesting that they do it this way. I also had to get platelets because mine had already dropped to 3K (remember normal is 150K-450K). Unfortunately, after the transfusion, my platelets only went up to 24. I don’t know why this is the case when I usually get a much bigger bump in numbers. I got that transfusion on Wednesday and as of today I already need another one because my platelets are 7K. More than likely, I will get platelets tomorrow when I begin my ATG. I will also need a red blood transfusion soon as well.

I start ATG tomorrow and it will take at least 5 days in the hospital. I’m really struggling with the idea of being away from Fiona for such a long period of time. She will get to come visit me but she can’t really stay overnight and we need to try to keep her on a schedule so she is getting a decent amount of sleep. I don’t think other visitors besides my immediate family will be allowed because the ATG will lower my immune response. I believe that will continue for at least a few weeks after I get home. Once the ATG is over, it will probably take 3-6 months to determine whether it has worked.

That’s all for now since I’m going back and forth between packing, playing with Fiona, and resting.

Updates

Hi Everyone, today I drove into Portland for a Picc Line. This is a central line that threads from my arm to a vein at my heart (medical people correct me if I’ve explained it poorly). It really freaked me out but I barely feel it now.

This is in anticipation of needing ATG starting this weekend and in anticipation of requiring additional transfusions until the ATG works (which could be months).

I am having trouble with the concept of having a central line. I’ve been getting transfusions for 9 or more months now without getting one. Aside from all the annoying things about it like no swimming or baths, and awkward showers, it just feels like giving in to a new reality. It is like getting this line says that I’m going to be sick for a long time. Over the long run I know it will be the better option and maybe I won’t look like a drug addict or abuse victim with all the bruising on my arms. But instead, now I have two IV tubes sticking out of my arm. It feels like this guarantees we’re in for an even longer haul. I know just having a Picc Line doesn’t make that true and I understand it is the practical choice – especially since I’m not a candidate for a port due to my low platelets.

But I’m just very tired. I’m tired of getting a diagnosis and then having it change and I’m tired of waiting for things to work. I’ve tried desperately to not think too hard about my health or how long this has been going on but some days I just get overwhelmed and today has been one of those days.

I find I am stressing out about very small things. I’m upset that my order got lost online and now they are sold out of an item I wanted. I’m stressed that I am missing a sale on clothes for Fiona. I’m stressed about driving into Portland again tomorrow during rush hour. I’m obsessing over these tiny things because I just can’t deal with anything much bigger. When I do start thinking about things, it can be hard to stop.

I’m incredibly nervous about my bone marrow biopsy tomorrow. I’m fine with the procedure though it is painful (IV morphine, here we come!). What has me more nervous is the idea that they could find something they missed or that indicates my disease has progressed in some way. In reality, the doctor doesn’t expect anything different and plans to start my ATG this weekend. But I just keep thinking that this could show something worse.

I just want things to go back to normal. I want to be healthy and doing fun things with my daughter and husband. I want to somehow let go of this weight and fear. I don’t want another biopsy. I don’t want more bad news. I’m tired of feeling like I’m being punished for some cosmic wrong I perpetrated on the universe. Of course I know I didn’t cause this. But it’s so easy to think that way. It’s easier to blame myself than accept that sometimes bad things just happen. It just feels like things are always getting worse though and I would just like to catch an effing break.

Tomorrow I’ll feel better and it will be back to our regularly scheduled programming – staying upbeat and as in the moment as I can for Fiona and my family. Life has to keep going and I want us to have as much normalcy as possible. Sometimes a little denial can go a long way toward surviving the day.

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