Notes From Supergirl

My Diary from the Trenches

Day 129

October7

My internet seems to be up and down in my new room so I am blogging now while I have a connection. Yes, I’m back in the hospital, now in the transplant ward, for the start of round 3. In a short while they will begin my next round of chemo which will completely erase my bone marrow, leaving me with no immune system whatsoever. Two out of the three doctors I have seen so far indicated that this treatment might be shorter and easier than the previous two I have gone through. The third doctor indicated that it will probably be longer. I just laugh about it at this point and hope for the best. They say I will be here 3-4 weeks. And for those who have asked, right now there are no limitations on visitation. Please feel free to come by!

I feel like I am better prepared this time. I realize what my risks are and I, honestly, am just praying that I get through this smoothly. I might be more scared this time. It’s flu season and I’m worried about infections. I am also worried about loneliness and isolation. I miss my nurses from the other unit already, although everyone here seems very nice so far. I was under the impression that I would be completely isolated to this unit, but it seems that if I am in okay condition the doctors may allow me to walk around a bit. They may even allow me to see my children in the waiting room outside the unit. We’ll see what happens.

The hardest part now is the mental battle. A very nice, sweet nurse just came into my room to draw some blood work and proceeded to tell me how she lost her mother, father and sister to cancer. Her sister was only 44 and left 2 teenage children behind. When her mother was ill, she asked her children not to pray for her to stay because she was finished being a mother. I almost yelled at the nurse when I said, “I’m not finished, I’m staying here for the long haul.” She said, “oh, I’m just saying you have to take things day by day.”

Maybe there is some part of me in denial about this whole thing, but I feel like the best thing for me is to keep focusing on the positive and to only think of good things that my future holds, not the worst case scenarios. I won’t lie, I had a complete breakdown last night after I tucked Ty into bed and explained that I had to go back to the hospital again. He got very sad about it and I tried to give him positive things to think about. I know he will be busy with people going in and out and all of his social activities. But there are no words to explain how much it breaks my heart not to be there with my children. I miss their smiles, their laughs, being there to comfort them when they cry and being there for all of the little day to day things that we often overlook. Nothing made me happier these last few weeks than seeing the enormous smiles on their faces when I picked them up from school.

A couple of people have said to me recently how strong I am to be going through this with the positive attitude that I have. While I appreciate that, I want others who are reading this who may be going through similar experiences to know that I have days where it seems I can’t stop crying about how unfair things feel, the “why me” questions over and over, pondering what horrible things I may have done to deserve this and the overwhelming fear of what will happen to me and will I get to be here to watch my children grow up? Those days, it seems the tears pour on for hours. Having to go through this again, now, I have had many of those days. My health has improved so much since the last treatment, it feels so surreal that they will once again destroy part of me only as a way to heal me. And there are no guarantees that it will ever be a permanent, long-term or even short-term fix. I know this is what cancer patients deal with now everyday. Whether you have been in remission for 1 month, 1 year or 10 years, I suppose that fear of the unknown is always there.

A couple of months ago, I compared this journey to a car trip. In the beginning, I was fearful, but eager to hit the road and start beating this thing. During my second treatment, I was like a child in the backseat crying “are we there yet?” and not being able to see the destination ahead. Now, I feel like I can see the destination ahead but I have all these fears about roadblocks, hazard signs, natural disasters and what not getting in the way of me finally getting there. But I know that now, more than ever, I need to have faith in myself and my doctors that I will get there. The only thing I can control is my attitude and my belief that there is so much left for me to do here that I will get through this okay. I have to believe I will be looking back on this experience on day and thinking, “wow, I can’t believe that happened but I know I am a stronger person for it.” I will not let this stop me and I will be here for the long haul.

Ok, okay, now I have to share a few things. One, take a look at the pics below. My new room has an almost direct view into both Orioles stadium and Ravens stadium – not too shabby.

Also, I have to thank Robyn for coordinating our Supergirl bracelet jewelry session on Wednesday. Poor Robyn has been trying so hard to pull this together for the last 4 months and it finally happened. She ordered these Supergirl charms from Australia! Phaedra and Melly made it out and we all made fabulous bracelets. I am in love with mine. Check out the pics below. Phaedra’s rock star bracelet is the one in orange tones, mine the one in purple.

Robyn and Melly

Last but not least, I want to thank Heather for going out on Monday for a great dinner and conversation (despite too much Googling ;) ), Matt for a great show on Tuesday night and honoring me with a song that I missed (darn it!) and my Aunt Helen for coming down and taking care of my kids for the next few days. My aunt got one day of prep time but it was enough for me to see that my children will be well taken care of and much loved. Not to mention that my dog may also be trained by the time I come home!

I can’t wait to see everyone soon. My chemo starts shortly. Wish me luck!

posted under The Daily Record
4 Comments to

“Day 129”

  1. Avatar October 7th, 2010 at 6:05 pm Darcy Says:

    I’m Dan’s wife and I’ve been reading along with him. You have a big month ahead of you (and the Internet connection sucks in the transplant wing) BUT it’s so awesome on the other side of this journey! Rest while you can. Exercise when you feel up to it. Walk when you are bored and just think of it as the only time during motherhood (for at least 16 years) that you will have any alone time! You are right, they won’t really limit your visitors…but you can. We did-on the oncology and transplant wing. It wasn’t super fun for Dan, but we believe it made his infection & fever risk drop. Also, this journey and all of it’s parts are so different for everyone. It’s hard to tell how you’ll feel from day to day. Just know that for the little bit of time that you are hurting, there’s a whole big, beautiful lifetime to experience on the other side of transplant. Take care and we will be thinking about you. If you want to get in touch with other folks that are fighting similar fights, go to the Leukemia & Lymphoma Society website and read the discussion board. There’s a BMT/SCT section. I post often as “danswife”


  2. Avatar October 7th, 2010 at 6:43 pm Dan walton Says:

    Boy!…….that sure looks like the view from room 924. Stay strong and you’ll be just fine. We’ll be there on Wednesday 10/13 for biopsy. We’ll see if you’re taking visitors then.


  3. Avatar October 7th, 2010 at 8:43 pm pam Says:

    Hi Jess,

    Just wanted to stop by and say hello! I work for Brian and he told about your recent journey. Your stories have brought tears to my eyes and I “hear” your frustration about your little ones. I must admit, your room does have a great view! Such a positive attitude you have.

    I have a friend whose daughter has ALL; she is all of 16 years old. Reading her story has broken my heart too. BUT, she is in remission and trying to get back to a normal life.

    So you hang in there…and I’ll stop by often to read your entries and write you back!

    Pam


  4. Avatar October 8th, 2010 at 10:54 am amy Says:

    My guess is, the dog will be better trained than the children by the time Aunt Helen is done with them…