Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Sunday, March 14, 2010

It's a miracle!

I can breathe!
It's a miracle.
It definitely feels like a miracle.
My chest is not rattling. My lungs are not wheezing.
I'm not running out of air moving.
I haven't woken up in the middle of the night listening to my lungs struggle through mucous, coughing and hacking and trying to get out what ever had a hold on them.
I don't feel like I may drown in my own spit.
I've actually slept through the night two nights in a row!
Not having to worry about your lungs drowning you in your sleep does help in the rest department.
I do think God and my faith has played a strong part in this change.
Keep those prayers coming.
The photopheresis treatment alone would not have produced these results. Photopheresis takes time, generally months.
I do think the addition of flonase to my regimen has helped by decreasing the secretions in my sinuses and overall congestion.
I was going to get very addicted to decongestants if I didn't find an alternative.
FYI- nasal sprays are some of the most addictive medications available. Overuse causes rebound congestion. You'll never get off the stuff, same with sudafed, etc.
I also think having whatever infection or virus I had clear up contributed to feeling better, but I'm calling this one a miracle now.
The hardest part in coping with my lung failure has been that I really thought God would never hurt my lungs again.
I thought I'd bargained that possible side effect out.
Losing my ability to breathe was my worst fear.
I have meticulously loved and cared for my lungs my entire life.
It was a big slap in the face to have them fail. I felt betrayed, but I know I'll never be given a test I can't handle.
I just wish I wouldn't be tested so much.
I have great faith that my lungs will be restored to a point of functioning I am comfortable with thanks to God.
It's all ready started.
I'm tapering to 30 mg of prednisone today. FINALLY.
I'm starting to feel like me again. 
It has taken months but I'm finally adjusting to the fluctuations in my body and emotions.
 I was worried this time may never come. 
After my brush with death in Dec. I was trying to be as pious as possible.
 I was on a strict spending freeze. I was anti-vanity.
 I'm trying to keep my soul in the best condition possible. 
I was forgetting the all important balance. 
Pious or not, I still have needs, like clothes that fit for example. Lucky me, I've never had to deal with weight gain before. I was really shoving my body into clothes it didn't want to be shoved into (especially the girls, which actually grew along with the rest of me this time).
I started the acceptance process, this time, first by trying to change my outlook. I'm trying to remember my exterior is just a shell. It's not me. It's not how I am. It contains my essence. 
The problem with just that is I don't even FEEL like myself. I've never dealt with body isues before. It's a whole new thing for me. 
Finally getting clothes that fit certainly helped. It just took energy and effort that I wasn't willing or able to put in before.
I finally ditched the oxygen tank bag provided for me by the oxygen company that distributed the weight unevenly making it too hard for me to carry, hurting my back, and fit nothing else for an LL Bean backpack.
The backpack makes it so I have the strength to carry the tank. I can ditch my purse, and combine. I've been looking like a pack mule for months.
Ironically, hopefully I won't be needing my tank anymore, but if I do I'm ready.
I hit up Kohl's and target for some feel good clothes. 
It's amazing the power of jeans that fit and look decent.
It's humanizing. 
Illness, especially cancer, is not only dewomanizing (I've lost my hair, grown hair in places it should not grow, gone menopausal, gained and lost a range of 60 lbs), it's down right dehumanizing.
I feel like a freak of nature with all these side effects. 
Of course, I finally come to terms, and now, hopefully, my body will start to heal.
I'm on my way.

5 comments:

Anonymous said...

If this was a test, than you get an A+!!!!! The strength God has given you has rubbed off on the people around you in our dailey challenges!

heather said...

So glad that you are breathing better!

As for the body image, due to steroids and the permanent damage to my body...I look and feel...yucky. It breaks my everything to think that I may look this way forever. Some may say it's wrong or petty, but they aren't me (or you).

I finally got rid of all of my clothes. All of them. If I ever get back to normal, I will get new clothes. Really I've accepted that size 4/6 was nice, really nice but likely ancient history.

Then I found some things that are comfy. I thought I would never wear jeans again, which I know in the big scheme of things shouldn't be a big deal. But to me, it was. My belly is not normal sized anymore. I refused to try on anything that had a number as a size. So it's S, M, L, XL ONLY. And I have embraced elastic waist bands.

In this, I found that Old Navy maternity jeans in a lower waist cut (without the panel) are awesome. With a shirt over them you can't tell. And elastic is now my friend!

The bra on the other hand, that was hard. I relied on sports bras for a bit. But even the biggest sizes binded...I have a lot of swelling. I finally went to Victoria's Secret and tried on bra after bra. I had no idea what size I needed, the days of 34 C were long gone. It took a couple hours and lots of self loathing but I finally found a size and style that didn't feel like a torture device. I have bras now!

And...I may look like a freak...but at the least I will always have a good purse!!! And accessories!

My point? Sometimes, it's just the little things. Try the maternity bottoms! And know that you're never alone.

Anonymous said...

I'm pleased to hear that your lungs are improved. I think of you often Hill ... & want you to know I care. Stay strong girl ... & call if I can do something.

F

Anonymous said...

Hillary I'm a friend of F and pray for and think of you and your family all the time....very glad you are breathing better...hope it continues to improve.......

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