Maddie, I am so impressed by you! I understand how hard it is to live with the real reminder that our death may be closer than we had hoped. I found great help dealing with those fears after starting EMDR treatment for medical PTSD. It is offered through my local cancer hospital which treats my uncurable non malignant blood disease. It has changed my life for the better, given me back my present day, my sleep and even hope for tomorrows. My quality of life is actually now far better than before my diagnosis.

I know your circumstances and disease are different than mine but I just wanted to let you know that what you are feeling is normal after such a medical trama and diagnosis and there might be something that can help you with this side effect of chronic disease.

xo

laura

Maddie, I send you my best wishes for comfort and healing.

Sending you prayers, love, every good thought, every positive and healthy vibe. Thank you for sharing this update.

Maddie, thank you for taking time to send us an update. Please stay strong and feel every good vibe and healing thought coming your way. You have so much to think about right now I can only imagine how hard it would be to get good sleep.

Scar? What scar? You look great!

Thanks for checking in MaddieLee.

I am glad you are doing better and will continue to keep you in my prayers. 💜

I will pray for the medicine to work well and be tolerable able for you. This is such a great deal to cope with for you and your family. Thank you for looping us in.

May you and the miracle man continue to heal quickly. Sending you both prayers and warm wishes.

Good to hear from you -- and everything sounds almost as good as we could hope for you -- and it still will be if the treatment slows things down in your lungs enough that you die of something else -- like old age. You are wise to have your things in order -- we all should have that once we have kids or own property, but don't stop living and enjoying each day the best you can. You may have more than you expect!

Maddie, my heart and thoughts go out to you. There is always hope that things can improve. The way in which you are handling this and communicating with us here shows your incredible strength. Thank you for giving us this update.

thank you for updating us----. I so admire your strength. Sending hugs.

Maddielee, wishing you continued strength, and also peace, good results, and no side effects.

xoxo

No words, just awestruck by your openess, sharing, courage, strength and wisdom! Take care.

Maddie how kind of you to share, i cant get over how beautifully your scar is healing. Your post has made me think about and perhaps put some my husbands and mine health issues in percpective . Wishing you continued healing and peace .

Maddie, I am still holding you in my thoughts and wishing you the best (both you and your DH). Conserve your energy. Rest and contine to recover.

Love you ML. Although I know posting frequently is not going to be on your "to do" list, know that I am still thinking of your and sending positive energy vibes out to you as you navigate this difficult course . . .

You're a courageous woman, Maddie, and I continue to pray for you for comfort and healing, and also for moments of joy as you go through each day.

Thinking and praying, Maddie.

@maddielee, you will continue to be in my thoughts and prayers wishing you strength and joy and comfort.

I am just now seeing this post concerning your health issues. You are climbing mountains and conquering the obstacles with honesty and grace. My thoughts are with you on your journey forward . None of us know what is ahead nor do we want to . Its this moment only. 🙏

c

Maddielee, as our family is going thru a cancer surgery and battle with my brother, my thoughts are with you these days. I hope you are healing and doing well. Wishing you strength and comfort. Be well dear one.

I hope all goes well for your brother OutsidePlaying.

5/18/2022

Thank you all. Your concern and caring touch my heart.

My DH continues to surprise his doctors with his bounce back to good health. He was taken off his antibiotic on May 10. (He had been on some sort of antibiotic since he was in the ER on November 28.) We are watching for any sign that might mean a relapse.

I am feeling well. Very well.

I have been taking a drug (Gilotrif) to slow the growth of the lung tumor since May 6.

The first side effect of the drug was felt in my mouth. Started with a swollen lower lip (inside the mouth, not duck lip). Just puffy enough to cause me to bite it, more then once. Rinsing my mouth with a salt, baking soda and water rinse throughout the day soothes the slight tenderness in the rest of my mouth. The white sores, like thrush, that I have been warned about have not appeared.

I’ve only had to use Imodium on 2 occasions. Hooray!

There’s a list of other possible side effects that might pop up at any time. Those I have now may go away after my body adjusts to the med. Blood work will be done 6/2 to check for the important inside stuff, like what the drug is doing to my liver.

The warnings on the drug info include …… 1. Staying out of the sun and

2. No alcoholic beverages. Two things I enjoy, often at the same time.

I still have not been cleared to bend at the waist and still must sleep on my back. My appointment with the hip surgery team is June 8, hopefully restrictions will be lifted then. Sleeping on my back continues to cause crankiness. Because I am not a back sleeper and can not get comfortable so sleep is interrupted.

I am almost completely free of using the cane. PT has moved from ‘in home’ to the Physical Therapy unit at the hospital. The first couple of sessions focused on leg muscles that haven’t been exercised in months. I feel the burn in my thighs, which is good.

I’m thankful for all your prayers, thoughts and kind words. The people on this forum prove that Internet access is not all evil. Love and peace to all.

Thank you, Maddielee. This is a good report.

I’m so happy to read these great updates! 😍🥰

Looking forward to continued good news!

That's a great report and thanks for sharing the nitty gritty - helps to understand the full picture. I'm sure you've tried all the things for back sleeping like pillow under your knees and/or pillows wedged at the sides of your ribs under your arms - the way they do in hospitals. Sorry you can't get comfortable.

Maddie, are you a side sleeper? I am and also had a hip replacement (years ago). I now sleep with a body pillow that I adjust between my knees and then rest my upper arm on too. Makes for good alignment, once you are cleared for other positions. I totally sympathize - I am rather stuck in my sleeping ways. Glad you are doing so well and I hear that more and more so all the best to you for continued good management.

Glad to see such a positive report. I hope you can solve the sleep position sooner than later. I can’t sleep anyway except side and use a pillow also as others stated to rest my arm and pad between my knees. c

Maddielee such good news about your DH! Also wonderful to hear you are very well! You have my good thoughts in your corner and they will continue!

I understand about not being a back sleeper! I struggle with only night time hip pain on one side. Of course it is the side that I inevitably wake up on. I'm back to trying different pillows and things. I hope you get your sleep position under control very easily. I wish it were easy at least a little bit.

This sleeping on my back thing has been awful.

I’ve tried pillows in every possible position. What I end up doing is to start in our bed. After about 2 hours of sleep, my back starts hurting so I move to the guest room bed. Feels ok for a short while, I dooze. I then try another bed, dooze some more. At about 5 am I make my last stop - The Recliner. I actually can sleep for almost 2 hours there. I have tried going directly to The Recliner but it doesn’t work for all night sleep, just naps.

I know that once they give me the OK to sleep on my side or stomach my sleep problems will go away. I least I hope they go away.

I wonder if a wedge would help? I had to start sleeping on one last year. It took a while to get used to, but now I can’t sleep without it. I’d love an adjustable bed someday!

Glad you checked in. Jinx may be right about a wedge pillow. Jinx, what size do you recommend because the one I bought is way too big.

Maddie, if you can sleep at an angle a wedge would be perfect!

I didn’t mention, I have 3 different wedges that Ive tried. Just can’t get comfortable.

signed,

Princess Winifred Woebegone 😊

Praying you sleep better once you can turn! Thank you for the lovely update…..you are in our prayers daily.

Maddie, glad to hear you are making good progress and your DH is doing well. I'm sorry you now have to deal with a sleep issue. I'm hoping your June visit will end the back sleeping and you will finally get some rest. Sending my best for both of you!

Ahh, bummer, maddie! Sure hope you can find a solution.

Oak, I’ll measure when I get home. It’s on the small side … DH picked it up for me, I’ll ask him where he got it. I HATED it for the longest time, now love it. :D

Glad for the good report. Hopefully you won't be on your back too much longer...maybe check under your mattress for that pea, Princess! :)

(Reminds me of my Mom who said, whenever we'd trip over nothing, that we were princesses and could detect the slightest flaw, just like the one with the pea.)

After an artery graft in my leg I had to sleep on my back too. I ended up renting a hospital bed (doctor wrote a prescription) and Medicare covered most of the cost for 3 months. I think my share was $19 a month. It was a real life saver. I had tried the wedge and also my recliner, but like you I could only sleep a couple of hours.

❤️❤️❤️❤️❤️

I'm sorry Maddie and hope there is something that can help or that you get news soon that you're free to sleep however you want. Do you think some kind of plush topper would help?

Nice to hear from you, Maddie. Sounds like things are going pretty well. I sympathize with the back sleeping. At various times i have had to sleep on my back and simply could not do,it. Every night I look forward to curling up on my side. Well, this too shall pass. All best to you.

Glad that both you and your DH are getting positive results. A lifelong side sleeper, when I was pregnant with my twins, especially the last month or two, I couldn't sleep on my side because it felt like I was squishing one baby. Couldn't sleep on my back because that caused my expanding uterus to block blood flow from my lower extremities to my heart. In other words, as soon as I lay on my back, I felt like I was going to faint. My solution was the recliner for the last 4 weeks. Lots of pillows and blankets. Sending you positive and healing thoughts.

Thanks for this update Maddie. I am happy to read such positive news. I certainly hope that your sleep problems improve. Keeping you and your DH in my prayers.

Maddie, sleep is so important to feeling better. I've been there too. The support you need for side and back sleep can be different, and your mattress was probably selected for your side sleeping preference and has definitely conformed to your sleeping habits. Even the pillow under your head can make a difference. Have you tried a topper on your mattress? Even if the firmness of your mattress is ok for back sleeping, your mattress may have some hills and valleys that prevent it from supporting the small of your back or letting your hips and shoulders be properly supported. A topper can help fill the gaps and may help give you support you need. They can also just be a soft support layer when you are dealing with discomforts. A different pillow can help too. Whatever you need, I hope you find it and get some rest so you can deal with everything else easier.

Maddie, you and your husband are doing great. Gald you are feeling ok. Sorry you are having trouble sleeping.

See if this helps you relax, so you can sleep on your back. Rest one hand on your chest baove your breasts and below your neck bone (clavicle) and the other hand just under the breast at the top of your stomach. A therapist suggested this position to me, and it has helped me sleep on my back. I ahve no idea why but it has. Also be aware of your breathing. My pillow is rather flat but cushy enough to cradle just my head. I find that I am most comfortable if my shoulders are not on the pillow but the nape of my neck is at the edge of the pillow. At first, I listened to some meditations that I found on the internet. I also heard that sleeping on your back will result in fewer facial wrinkles. This piece of motivational wisdom you probably do not need.

I bought a 2” thick memory foam topper to go over a memory foam mattress. on top of this I put a plush mattress cover. Sometimes smaller, or thinner cushions can help. I cannot start off sleeoing on my back, but for some reason end up that way, and comfortable — go figure.

Maybe a very adjustable hospital bed as mary-lu suggested might be helpful.

I hope things improve for your sleeping comfort — we all need restorative sleep, and especially when trying to heal.

I hope on your next visit you’ll get your permissions restored: sleep position, resting in the sunlight, and a bit of alcohol refreshment ;)

I also wish your dear husband the very best.

So happy to hear you are improving and I love that you have taken the time to share with us. Praying for better and better days!

Also sympathetic about the sleeping / comfort difficulties, Maddie. I’m a side sleeper who had to sleep on my back for a year while recovering from bursitis in my left hip. It was very heard to get a full night’s sleep and I was often miserable. Unfortunately I have no tips or tricks to make sleeping on your back any less strange for a confirmed side sleeper but eventually I got used to it. With respect to your husband, surprising doctors with his speed of hesling is a great thing, and hooray for manageable side effects for you from your meds. Thank you for the update and for your ongoing example of strength.