Low T-Cell - Bone Marrow Biopsy

Oh wow, sounds like a nice weekend ahead. We don't use fahrenheit here so I am getting all confused, great that you can enjoy the nice weather 😀

I am very glad I am currently in Germany and having great doctors, it just took a while to find him. I was living in Asia previously and I am very happy to be in Europe for this kind of issue. I am just very frustrated as it has been going on for almost half a year now.

You will definitely make it to 24 months, its really nice to hear - I like the attitude. It should not have been easy, but I am sure now you are full of positivity about life. What were you the most scared of when you learned about your blood cancer? I think my biggest fears is to be without my mom/dad/sibling in Germany (I do not speak the language which is extremely annoying, need a work visa etc.), loosing my partner and thinking what it could have been without it, missing out on "time" and moments. At 30 year old, I do not know anyone who is sick around me...I feel like an alien where people just enjoy their life, party, think they are invincible.

Thank you so much for the birthday wishes :), I will try to enjoy the weather, parks, having nice coffee...It will be nice after a month indeed. I am thinking to go see an HNO tomorrow for the swollen saliva glands/no appetite but I am scared they won't be able to help me out unfortunately...

Enjoy a lot the nice weather next weekend, and thank you again for the support, its always nice to read you.

@mariabrat
Ooops, I forgot to change the temp to C. Yes, 70 degrees C would be a bit steamy at 158 degrees!! Looking forward to spring sunshine warming things up here, but not that much!! Yikes! 🙂

I’m just trying to absorb all of what you’ve gone through to this point in your life. You’re only 30, moved to a foreign country where there is a language barrier, and you’re far removed from your family. When’s the last time you were home or saw your family?
I can only imagine how incredibly difficult this is for you, feeling like you’re alone in facing a potential health scare. It would be challenging in the best of times.

I really hope your partner can help reassure you that he’ll still be in the picture no matter what! With him having been gone for a month, it really provides too much idle time to think about those pesky “what ifs” and he hasn’t even had the chance to prove himself worthy. 😉

My daughter is 37 and these talks with you are very similar to how she and I would be sitting side by side, having our heart to hearts. So when you asked what my fears were when first diagnosed she was the first thing that came to mind, along with my husband. We’re very close and I imagined the void it would leave if I didn’t survive. (And the mess I left behind in my sewing room!!...at least my underwear draw was cleaned! LOL)
I was scared to run out of time and how it would impact their lives. My daughter is married and lives 5 hours from us. When I was admitted to the hospital for 5 weeks she came home to be with her dad. She and I had very pragmatic, beneficial and open discussions about the future. It put both of us in a better place mentally. I felt reassured that she’d be ok and I was prepared for any eventuality...though failure was not an option. 🙂

Being ill when you’re older is a bit different than facing something difficult when you’re younger. I lived a long, full, happy, heathy life. But even so, I still felt robbed. At 30, your entire life is ahead of you. And it is so normal to feel invincible at that age! So, no wonder you feel cheated or robbed of this time...this past year of feeling awful with no diagnosis as to what’s going on.
All of your concerns about missing out on “time” and moments is totally valid! I felt and still feel resentful sometimes when I see families around me carrying on like there’s no pandemic while I’ll have to be cautious the rest of my life. It doesn’t seem fair. But sometimes it’s the hand we’re dealt. And at this point, having gone to heck and back, I’m just grateful to be alive and happy! My life is full again, just in different ways. So I let those other emotions roll off my back. Their life is not my life.

I’m so glad you finally found a doctor whom you can trust going forward. The fact that you’re being taken seriously, with testing and follow-up tells me you found the right clinician. So let’s stick with that plan on keeping positive and being upbeat. I think you’ll feel at least some emotional relief tomorrow when you get an actual hug! But as a caution, continue the Covid protocol. you’ve only had one Covid vaccine shot and a lower white blood count. Just sayin’. ☺️

All the best, Lori.

@mariabrat Just popping in to say Hi and to let you know you’re on my mind. I truly hope you had a delighful weekend reuniting with your significant other and are having some better days health-wise. Wishing you all the best this week. Lori.

Wow thank you so much! I had an amazing weekend, full of surprises and literally no time for bad thoughts. My partner organized a surprise with my friends in a park and all of them had to get covid tested before. Great coffee, brunch, cakes, talks, games, wine, gifts, videos montages and so on 🙂 It was really great! Probably the best birthday I could have imagine in a covid time...I surprisingly felt quite good as well which is perfect.

I had some bad thoughts tonight for the appointment tomorrow but hopefully its a good sign that I haven’t heard back yet from the doctor?! I will write you tomorrow as Im off to bed.

How was your Easter? I hope you manage to enjoy the weather and some chocolate;)

@mariabrat This is such an uplifting message from you!! You’ve brought the biggest smile to my face and heart! I couldn’t have wished for sweeter news hearing that you’re feeling so much better and that you had an amazing weekend. You were due for this reward after the horrid past month!
Aw, your partner sounds like a keeper! What a fun weekend of fun and celebration for you birthday!! And obviously this event took quite a bit of planning and covert ops. Giggle. Are you feeling more secure in your partnership now? Being new in a relationship and then having to be apart for a month gives the mind way too much time to play with doubts and insecurities. Someone having your back is uber important so I do hope you feel that way with your partner now. Gives me the warm fuzzies!! ☺️

And of course, I pray for the very best outcome to your appointment today! With our time difference you may already be there. Big hug as you go forth! Lori.

Hi @loribmt 🙂

My partner was really sweet indeed (definitely a keeper). There is "no guarantee" that my partner will stay but at this point of time he is here and supporting, so I guess its good. His vision of life is "lets not think about the future since nobody know how they'll react anyway, so that would be lie to guarantee that I will be there forever". That's not really what I want to hear but I guess that this is the reality?! He also does not believe in wedding for the exact same reason...Its a little annoying but pretty realistic.

On another note. I am having the BEST NEWS to share with you!!! I went to by appointment and there is NO cancer in the bone marrow, no hidden lymphoma or leukemia, I am SO relief. I almost cried in the doctor office. There is a decrease of T-Cell produced in the bone marrow which seem either to be a deficiency or an autoimmune reaction. The doctor suggested to see a Rheumatologist which might take a few months.

So still a mystery but at least with a full body MRI / CT Scan and so many blood tests and bone marrow biopsy I guess its pretty safe to say that I most likely do not have something TOO serious? I am thinking to go to the beach for a week to celebrate life.

@mariabrat I have tears of joy for you, sweet girl! What a relief that you got such positive news! Even though you still have some unresolved symptoms you can indeed put the worst thoughts behind you! 💕
As for your boyfriend...giggle...I see someone immature and afraid of commitment. But he sounds like fun in the meantime~until either of you decide what your futures holds with a life partner.
For you, life is a celebration to be met with joy daily! Embrace it to the fullest.
Will you check back from time to time? I’d love to follow your story. And, I feel you have great insights with your experiences to help others. Big hug and all the best! Lori.

@loribmt awww this is so sweet from
you! You have been a beautiful help during this period, really. I am super grateful for great person like you are. Of course I am happy to keep in touch anytime 🙂 I will get an appointment in a few months time but for now, celebrating life is important....And for my partner we will see how this develop. Im a bit old fashioned with this idea of being there for each other whatever. It seems a little hard these days ;P

Again, big hug 🥰

@mariabrat Hi! It’s been a few weeks so I just wanted to touch base to see how you’re doing.
Are you feeling any better? The past months have been really mentally exhausting for you so I hope that you’re growing stronger and improving each day.

As you’ve said, “Celebrating life is important!” What have you been doing this month to keep your spirits energized? I spend time with Mother Nature. LOL. She keeps me entertained with all the wildlife, flowers, trees budding... Today, I see we’re getting an addition built onto our house! A robin is building a nest right next to our back door on the light! ! I’m sure we’ll be dive-bombed every time we step outside. Oh well, babies will be fun to watch!

Take care...sending positive vibes ‘across the pond’ Lori

Hi Lori! 🙂 It is so refreshing to hear from you!! How have you been doing? I am so glad you're spending time outside and it is so cute that you're getting some company 🙂 Do you have a lot of nature/parks around your area? How is your health?

I wish I had some awesome news for you! Well, I do not have really bad news either, but I'm unfortunately not getting any better. I am having a bunch of weird symptoms from the tongue, stomach, & neck glands soreness, cough & no appetite. The full exome sequencing didn't reveal any diseases. I am not sure how familiar you are which those scientific terms 😉 but it means that there is still 2% of the DNA that is not covered in this test. To get 100% we need full Genome testing which is not covered by the insurance. My doctor is trying to get special approval from the genesis department yayy (crossing fingers). In the meantime, I went to see a rheumatologist but they are clueless. I did some additional autoimmune blood test (still waiting) and sonography of the neck which doesn't show swollen lymph nodes. I also went for an allergy test out of desperation LOL. It seems like there something "consuming" or not producing my T-Cell in the bone marrow and I am much desperate on what to do next. Could it be that this gastroscopy or MRI missed something? Could this still be cancer? This is still in my head.

My partner had to fly out of Germany because his best friend was given 1-3 months to live. After only a few days she died while they were asleep in the same room. It's crazy because last October she was fine. I believe she had a wrong diagnosis initially (she is living in Serbia) and things progressed super fast. My partner is away for another month to process this with the family there so it's a bit of a rough time. It is so sad to see someone so young die like this. I am trying to give space and take care of myself. Hopefully, in June we can take a month somewhere by the beach and do nothing but enjoy life.

In the meantime, I am trying to remain positive, I have to admit that I feel like I am lacking resources...But hey, I didn't want to sounds too negative here. I am still enjoying those walks with friends, exploring new coffee shops, reading and watching more, and try to focus on work and personal development. 🥰