Home, thoughts and requests

An update is due as I am home, and the words have wanted to flow, I simply haven’t wanted to stop for a minute though to write. Too much needed my attention. My son, my love, my life, my home, me. I am home. Though, Los Angeles treats me well, and I truly, truly enjoyed my time there, but now, I am home. Home to the house on the lake where I can cuddle up with my boys and not mind the rainy days. Hobble down 42 steps to our sanctuary and be okay with not wanting to leave. The hardest part of being home, and please don’t take this the wrong way, are the questions and calls from people checking in and wanting this information. My first week home, I just wanted to see my son and husband. I’m not sure why that was difficult for some to grasp, in all honesty, the contact from those who aren’t apart of my everyday life, seemed a trespass. Something I am working on….letting people care and it be okay. It is odd and difficult having people around always. Always! So, there are those of you who are incredibly thoughtful of my process, who connect remotely, with a simple text and let me be if I don’t answer, and I thank you. Now that I am settled in with a bit of space between LA and home, I can come up for air, enjoy my visitors, friends and family who rally around to help and offer some sort of update, though I don’t have much to tell. In all honesty, it is a challenge being home. Life in LA was easy, restful, and healing. Having the time to myself was needed. Being home, it is apparent how hard things can be; I am immobile and I am responsible for a little one. My pain in the right hip has gotten worse and my walk has altered. I am unable to drive myself around, so now we need two sets of hands, help with Milo and help with carting me to the numerous appointments that maintain and shape my life. This means that there are always people around, and this has been the most difficult part of the cancer process: navigating the waters of schedule, people and their needs, and keeping Milo tuned into his parents, rather than his caregivers.

The request, Stop Asking Questions, please.
I love everyone, and wouldn’t want to go this alone, couldn’t, I am so blessed with my champions who assist me. This is not what is difficult about home. It is the questions. I’m not sure why the answers are needed while I have none, or when I have this blog….can you not read what it is I want to tell? Here you go… This is all I have. This is the update. I have cancer, I don’t know when it’s going away. I have a lot of pain right now. The new routine is that I go to LA to get help with a new set of drugs, a new set of eyes and ears and I feel like things are working. I feel great about this new treatment, but that’s all I know, it will have to be enough because right now, I want to spend time with my son, and help him understand why my boo-boo has not gone bye-bye though I am home from said healing. My energy is taxed, I can barely walk, let alone explain away the intricacies of metastasized rare cancers and study drugs. I truly appreciate the love and the want to ensure I am on the road to recovery, but again I only know what I share, the daily ‘how are you’s?’ seem to serve as a reminder that I am in pain. I know you don’t know this, so I am sharing this now. While I am on the subject and using this as informative posting, the hours between 5pm and 7pm are for Milo’s dinner, play and bedtime, time as a family. It seems everyone wants to catch up then. It must be on one’s way home from work time or something, but you all call and text at the exact same time. (Otherwise, I wouldn’t bother expressing, but the phone goes crazy with the beeping, and I keep it on for doctors and such). I am occupied and move at a snails pace as written, as earlier posts state, so I am off line and off of the phone. I love you all and will be truly updating soon. Scans are Monday (Wish us luck this drug is working!). Update at the end of the week. I will be in LA for appointments and the drug pick up, I will be home in a few days, so there isn’t a need for checking in before I leave or return. Many thanks…

20130413-032402.jpg
Cheri Pearl Photography http://www.cheripearl.com/blog/

Advertisements

21 comments on “Home, thoughts and requests

  1. billgncs says:

    sending you good thoughts! πŸ™‚

  2. Jill says:

    My respect for you just increased (is that even possible?!) I learn from you every time you write. Thinking of you every single day from so far away. Sending lots of love to you and M and K.

  3. Love, space, time, patience, and peace. Always thinking of you. . . From afar seems we are both busy and occuppied by what’s most important right now w/less time for extras, but still in my thoughts and prayers and always a friend here . Thanks for writing.

  4. Cancerpurse says:

    This is perfectly perfect. Good work.

  5. I get it. I remember well that feeling of being too tired and overwhelmed to respond to the well-wishers who contacted me out of love and caring, then feeling incredibly mean for being annoyed that they were contacting me. While it may be out of love and full of care & concern, it’s taxing, and you have every right to set the terms of that contact. Good for you.

    • jelebelle says:

      Oh thank you….for getting it, I know all of my bloggy friends would! I do feel mean for wanting to tell everyone to shut the ‘eff’ up when they text ALL day long! πŸ˜‰
      Anyway,thank you for the validation! Love and quiet support? Hope you are doing well. xoxo

  6. exiledtyke says:

    I get it, but then I’ve been there. The messages I really liked were just the smiley face ones which showed someone was thinking of me but didn’t need me to do anything other than smile at that thought. It’s difficult when people want to connect and you don’t have the energy right at that moment, but you have to put yourself first as you need that energy for yourself and your curative time with your family.

    I really hope the scan gives you the results we all wish for you.

  7. Dawnelle says:

    I don’t know how to do emoticons… I’m old school xoxoxo xoxoxo xoxoxo!!!!

  8. Jodi says:

    Yes, yes, to everything you wrote. I feel like I recognize your hands and your ring, and especially your waist and belt for some reason, from all of our years together. Makes me happy to see you, both in picture and in your words. xox

  9. Own it sista. Only you know what you need.
    Sending hugs and good energy.
    ooooo ~~~~~

  10. dear jen,

    i am so glad you are able to focus on exactly what is right for you. it sounds as though you have found a measure of serenity with things at a slower pace, so i can so understand how jarring it is to feel torn away from that. you are not being mean. it’s a gift to know what you need for you and your family, and i think you rock for being able to set boundaries and protect your space and your time together.

    sending my most powerful vibes for healing, comfort, and the peacefulness you so deserve.

    love, XOXO

    karen, TC

    • jelebelle says:

      Thank you Karen! Your comments are always so kind and uplifting. It’s always great to hear from this community that my thoughts are not crazy talk πŸ˜‰ I appreciate you reading and staying in touch. It’s so helpful. Best of health to you xo

  11. oh, jen – it makes my heart sing to read such kind and encouraging words from you, my sweet friend. big (but gentle) hugs, and much thanks.

    love, XOXO,

    karen, TC

  12. Emmy says:

    Hi Jen, Thinking of you…Please know that when you’re in L.A. I am here if you need me….and I’ll be quiet…no questions πŸ™‚

  13. Awesome post Jen…raw and honest – exactly what people need to hear. The truth. I know it’s hard on both sides, people want to know what’s going on, to hear directly from you what you know, and to feel that you are ok…and I also know how hard it is to learn how to accept all of that love and support – but God knows how overwhelming the calls and visits can be. My own brother basically called me and called me and called me through my cancer crap and I kept saying – for updates, please just read my blog – and he refused. He just wanted to hear it from me and I finally had to stop answering the phone calls from him. They were upsetting and stressful. SO – good for you for asking people to respect your boundaries and your requests. I love this post. Hate to hear that you are in pain and limited in your abilities to take care of yourself and Milo as I know you crave to do at this time. It is a craving that never ends…wanting to take care of your special baby. For this, I am terribly sorry. Take good care of yourself and breathe deep and allow people to take care of what you cannot. They are doing it with caring and love for you and your family- but you already knew that ! Take care and keep that pain away…damn cancer.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s