My Husband, My Life, My Love, My Family, My Cancer
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Gracie, hope you are feeling ok. Lynnwood I think pain killer addiction is the least of our worries. I,take Gabapentin 3 times a day, also have fentanyl nasal spray, and allowed 3G of paracetamol a day. Today was treatments day, and my Oncologist calls me Superwoman, 27 cycles of trastuzumab, herceptin, amd xgeva - not spelled right? Feeling fine, but although my mets are in hip/pelvis, I have a lot of knee pain. She said it is arthritic pain caused by pressure on hip. Micmel I also take an antihistamine and it has helped a lot.
Oncologist told my DH off for too much sun on his face! Said she didn't need another melanoma patient!!!
Sorry for not naming everyone MJH good to hear from you. 50s, enjoy your trip!!
Night night, after midnight, been up since 620 am but had to watch football semi final
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i think I realized this today.
Life can only be learned backwards, but we can only live forward.
What a rough statement to accept. I learned I loved who I used to be, and never realized how very much. I was too hard on myself. I never felt good enough for anyone already. Then cancer happens. My esteem already in the toilet.
How can anyone, I don't think it matters who you are... man or woman and whatever cancer it may be, I don't think anyone could ever say that it didn't come into your life like an unwanted wrecking ball. Wether it's any stage or any age of life. It's one of the worst things that can happen to a person. I just still don't understand and just never ever will. Whatever I did to deserve this awful disease I sure wish at least I knew the why? Everyday is a struggle when the other thing that occupies your mind is mister cancer. Always whispering silently that it's there. Reminding me by keeping me in bed a good part of the day. That made me hate the hot weather and being on the beach. That sends me little bolts of spine pain to remind me who's boss. To Remind me who could explode again at any time it feels like it. Scaring me like I have never known, the sick painful grunge that squeezes and grips your heart to where you don’t even have a word to explain that type of saddness. Your heart and every cell in your body just feels so sick from the top of your head to your little toe, and it's never going to get better Ever... if anything worse, I will be up to 6 surgeries after July 30. I'm loosing steam. Even with ritilan, it's hard. Somedays I honestly don't want to be this person I've turned into anymore . What a horrible way to to feel About your life. Life is a gift. But it doesn't feel that way to me anymore, I see it now as a place I'll never see or look at the same. The trees look bigger and different. The sky makes me wonder, will I go there perhaps? The grass is greener and the love for my Family feels stronger, the rain smells more like rain. All I can think is, I'll have to go I'm stage four.... can't stay in remission forever, and struggling isn't fun at all. Remission I believe may need to be renamed because even thought I am In remission. I don't feel any better then when it all first happened. If anything. I have been spit up and chewed out. Never to be the same again. I'm not religious by any means. But sometimes I feel like I am in search of finding some sort of comfort and peace that I lost. I'm always looking for that feeling and how I used to be. I never stop looking for the feeling, of living life again. This is not quality in any way at all. This is exhausting and exsisting to love your loved ones.... at least that why I do it... what other reason would make any sense? it's a living hell. There is no doubt about that. I have a lack of direction or security anymore. It's been stripped away, like naked and afraid. Core emotional distress, that I can only handle so much of...my heart is just slowly breaking apart everyday. I'm sorry that was so long. Bad day today for me
I went to the seamstress with my daughter today, it's going to be amazing. It's beautiful for sure. We are taking baby steps. It seems. More peaceful. With her moving. The seamstress visit with her. Ties in with the reason I'm fighting. Or else a drive off a dark bridge might be in order.
I love my DH way too much, and my three precious kids. Sometimes I wish I didn't have feelings. Then it wouldn't destroy my heart and what my heart recognizes as its person. Why do I have to give that up? My heart recognizes his heart. That is what living is about. Not struggling to feel worth anything? wow what a day ! Love to all.
WAving hi to Minnie
~M~
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Bug hugs to you!!!!!!! You hit the nail in the head with your words! Cancer sucks!!
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Gracie-I hope you got some rest. Chemo, just wipes me out too.
MJH-Great picture! Sounds like you had a wonderful time! So glad you are feeling great on Xeloda and the tumor markers are going down! I hope it works for you at least as long as it did for me! I laughed when you talked about the "body shaper"! I've used those. Last time I did was for my nephew's wedding, 3 years ago. I ended up towards the end of the night, going in the bathroom and taking it off, so I could breathe again! I think I will skip it for our next nephew wedding, Aug 18th. I'm at the point that I choose comfort, and I don't give a hoot what other's think of me. They'll be looking at my wig/scarf that I will be wearing, instead of looking at my middle! I'm still getting the dizzies, not as bad though. I've been drinking four 20 oz gatorades a day! You would think that would keep me hydrated enough! I'm still only eating banana, yogurt, and instant breakfasts. My mouth is a mess. My stomach is a little better. It usually goes away by the weekend. Fingers crossed. Until then, I'm hanging in my nightgown. I'll take a shower this afternoon, and put on a clean nightgown. Why should I get dressed if I'm not going anywhere? I spoke with the oncology office yesterday, and they said I could come in and have another blood draw. I told them no. It's the one week out of 3 that I'm not there, plus it's my "hell" week. I'm seeing my oncologist next Fri (after early scans on Wed). They will be getting a piece of my mind then.
Micmel-I does sound like you are not getting enough of something, by your sleeping all the time. I know you don't feel like eating, but you have to have something. What about one of those drinks with the protein? During hell week, I have an instant breakfast for a meal. There is also ensure, and others. They have different flavors. It helps. Maybe a little walk around the house will help you too.
Lynne-Enjoy the white mountains! So nice up there this time of year.
Another beauty of a day here. I may try to go outside. My in-laws stopped over last night. My husband ended up getting grinders (or subs as others call them) for them and himself. I had my instant breakfast. We sat outside (yes I was in my nightgown), it was lovely. A nice breeze, so no mosquitoes. They left at 8 pm, for their hour drive home. My father-in-law actually drove too! That's a good sign. He's going to have be driving,after her lumpectomy and sentinel node biopsy on the 27th. Then she has 6 weeks of radiation. She's not sure if she will do it though. It's a half hour to the hospital she will going at. I can tell she's nervous. She's never even been put under before, and she will be 86 in Dec.
Have a great day everyone! Hugs to all!
Lynne
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Lynne(man), sorry about hell week, I hope the chemo goes easy on you.
Gracie, while I found abraxane tolerable, it does have its negatives, I’m hoping they’re few and far between for you.
MJH, the camping trip sounds awesome!
Micmel, oh dear, I hate seeing anyone go through such a difficult time. You need more fun 😀, I think that should be your homework, to do something that you enjoy each day, big or small.
Sunday I’m going to a concert, Boy George/Culture Club with the B-52s, can’t wait!
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Micmel-I can relate to your feelings. On Sunday I heard a sermon that was really helpful to me. It was about how we often spend time reminiscing about the past or fearing the future instead of just living in the now. It hit home for me because I do spend a lot of time missing the person I was-who had so much energy and stamina and a body that I liked. I was always "healthy" and could eat and drink anything I wanted. I feel like I suddenly aged 20 years and it's jarring. I also spend a lot of time fearing the future-wondering what my life is going to be like if/when the cancer gets worse. The sermon made me realize how much of "now" I miss. I am trying to be more consciously in the now. Today I am going off to the beach-I am a little fatter now but as I look around there are a lot of people who are also fat but they seem to be having a good time! I just get into the water when I get hot and it is good. Glad you had a nice time with your daughter getting the dress altered. If you can, try swimming again this summer. It feels so good-my body can move in the water in ways that I can't on land. It just feels so much freer.
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Lynne (man) yes I did get some rest. Thanks for asking. I hope you get through this hell week with not too many bad se’s! Keeping you in my prayers and thoughts! By the way, as I write this, I too am laying here in my recliner in my jammies!! Not getting dressed unless I need to go out!!! I figure hey I’m going to be as comfortable as I can be!!!
Hugs!!!!!
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I am struggling with nausea, weakness and lack of sleep. This is my 2nd week on Xeloda and it is definitely kicking my butt! Saw mo today and we are lowering the dose to 2500 per day. I sure hope it works! I have been bed and recliner bound since Sunday. I need some exercise, I hate just laying around! My Dh is looking at another surgery in two weeks, he has been caring for me and all the animals. How am I going to be able to do that for him? Lynne, Gracie and Micmel, I feel your pain.
Chicagoan, when I start feeling really bad about how I look in a bathing suit, I look around and pretty much feel immediately better. I love the beach, especially now that I have an umbrella! To me, nothing soothes the soul more than the sound of the waves, well maybe that lovely horse smell, but the beach is great also!
Keep on keepin on ladies!
Claudia
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Claudia, am so sorry you are dealing with nausea on top of everything else! Sometimes I think the nausea is the worst part for me! Saying prayers the lower dose helps out a bit. Hugs!!!!
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Well Emma is off to camp for 2 weeks my house is so quiet. We are headed up north Saturday for a while first chemo tomorrow.
Jim and I booked a trip for September to CO, sure hope I am still doing well enough to go, I think how much things have changed in past few months, this not driving sucks. And having to rely on people sucks, and being overly paranoid sucks, but I'm going on 3years of doing this for Me and 11 with Emma if we never planned anything because someone might not be doing well we would have missed out on so much. So fingers crossed all will be fine, I feel pretty good.
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Keetmom ~ Colorado is magnificent, my sister from another father Chelle lives there. I would really love the chance to go and am very jealous! I hope Emma has a blast at camp. I hope you're feeling pretty good as well! You're an amazing woman you are. Colorado is gorgeous you go girl!!
Bigbhome~ Hello sweetheart, I'm smiling seeing your name here. I am so sorry the fatigue train takes you too. It's just so damn maddening these treatments make us weak, tired, fat, or skinny, frail, feel older than we are. Then we adjust to one and think ok I can maybe do this with some Energy a few days a week. EHHHHHHHHHHH! Time for a change. Sucks royally. I miss seeing you around but completely happy to know you're being well taken care of and getting the rest you need. Today I cried for four hours in my bed and gave myself a migraine. Haven't had one of those in over 10 years. I just feel drained and like I'm loosing steam to climb a very tall hill. One that I never seem to gain any distance to get to. You're not alone beautiful soul, woman and friend. I just wish they could get some shit moving for us. I hope your DH does continually well with his surgeries, you’re both quite a team!
Today my daughter and I went to home goods after the seamstress, to look around for their new apartment. I had a gift card given to me during Christmas time from the local hospital infusion dept. been holding it for a while now. So we got some really adorable things for them. They seemed very happy. When she got home later this evening she FaceTimed me and told me how much fun she had and she loved her throw pillows. She got some other things, cookie sheets, mixing bowls, Pyrex measuring cup., a wood cutting board, And the flexible ones also. Coasters... a fake plant which is adorable! My DH this weekend gave them a double bowled and lid Pyrex set, which are very nice. So slowly we move faster towards the shower day. Where will I find the energy ladies? I am basically useless! Ritilan isn't curing this. So I'm already dragging through the store, which btw I had to sit twice because my face was red and I had back to back heat flashes. Zombie looking anyone? Moaning in the isle? No wonder all my isles were empty, they were probably afraid. I hand my daughter a pillow to put into the cart, and she blurts out! SIL wants to have a baby!! I almost fainted. Right there and then. Then she follows me up with not real soon or anything like that. Well, for some reason I'm not buying it. Why do these kids think they should have kids so they can pay someone else to take care of them, which is almost all of what they make anyway? I am begging the whoever powers that be, do not allow her to get pregnant... then she says. Oh we have to have the house first. Omg what? Didn't DH and I just get done telling you both that's why we saved this house? I could have biatched slapped her. Are you kidding me? You wouldn't even pay for this house? Dumb dumb. I guess you only learn backwords like I said. But damn I've already. Been there. Today sucked bad!
Ok wow this is going to be long again... sorry.
Chicagoan~ Hello there darling. So nice to see you again. I hope you're doing well. I know they say misery loves company. But our reason is just plain mean. I think of you often. Don't be a stranger.
Gracie~. Hi darling. I had a good day today with my daughter I will say that. I truly did. She was more than pleasant. I think it was definitely time for her to move out. It's working well for SIL also. We were always so close. Always.
Mae~ I love your positivity, please vibe some to me .I love your spirit and I love how you grab life by the ass and say ride bitc*!! You're amazing along with the other strong never give up no matter what sisters here!
Lynne(Man)~ you seriously are something else.intotally agree with you, that I am not eating enough, sometimes I just don't eat. I am truly not very hungry at all. I'm a snacker. But my taste buds as you know I am sure have been effected a lot. It's hard to do. And ibrance does hurt my mouth some months. This month I was gifted with a raging mouth infection. Painful!!! I am going to try to eat more. My problem is I sleep through my Meals and wake up feeling horrible. I can't win actually. But who can. Thanks for caring. Hugs to you!
Much love ~M~
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OMG MAE!!!! I love the B52s. I have the Rock lobster album and I love it. Every song Is pretty damn awesome. I always knew I got along with you. That's beyond fun!! Have an absolute blast! 52 girls Is one of my Favorite songs of all Times. I feel like hearing it now!! So many great songs. Thanks for the thoughts. I'll drag out 10 CC while I'm at it. You provided me with my something good to Mae! Thank you very much beautiful friend! ~M~
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52 girls and give me back my man are my favs too!
As party correspondent, I will be checking in with photos and a review 😃
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Hi ladies. Seems like some of you are having a hard time right now. Bigbhome, I would take the wonderful horse smell over beach any day. You know that most people think that sounds crazy, but not horse people. Maybe we are just a little crazy. So sorry to hear you're having all those SE with your change of treatment. Somehow you will be able to help your DH when he has his next, last ?, surgery. I know it must be so much harder with animals depending on you., too. Anyone you could hire for a couple of weeks to take care of feeding etc. When DH has his next
Micmel I am amazed at how far you've come with your relationship with your DD. Count that as a big accomplishment. And the shopping, you did it! Maybe it wasn't pretty but you accomplished it, too. Those are two big things that a month ago you didn't think would happen.
My DD is feeling great, I'm happy to say. Adjusting the shunt valves is working. I don't know when they will adjust them more or when they might remove the shunt. My DS has accepted his plight. Yes, he has to wait over a year to take that blasted test again, it's still so aggravating that they don't give it more often. But, his work goes on and he loves it. Seems like to me they are the busiest people I know,. My DIL is going to be gone for a week to a conference for her job. So the family is pitching in to take care of the kids. DD ant the first part and the grandmothers the second part. I get to have both of them spend the night with me. Yay. I'm looking forward to that.
I'm so happy to just gaze at my remodeled bedroom and bath that I seem to be staying in these two rooms too much. Either that or I'm just being lazy! Ha
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TIN ROOF! Rusted! Love the 80s music of B52s and dont they sing a song, “whats that on your head? A wig, a wig, a wig..." Sometimes I break out singing that and get strange looks from my loved ones....lol. Another song about fish heads, too? And lots of fun tunes by BG & CC.
Bigb, Gracie, Chicagoan, Lynne, hope you are all able to get some restorative rest.
Keetmom, yes, fingers crossed for your September trip.
Today I learned I have a broken foot bone. It is the fifth metatarsal, not a Jones fracture but further down and the doctor recommends getting a pin in it. Anyone else go thru this? If so, I'd appreciate any advice. He said the break has been there awhile since the bone has started to calsify around the break, and its near a tendon which wont allow it to heal on its own. I am tentatively scheduled to get the pin next Friday. I am very tired of foot pain.
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bigb,Gracie,Chicagoan, and lynn- I hope these se end soon.
micmel- I agree with the eating. Maybe you can set an alarm to wake you up to eat and maybe have something small to eat by your bed. Also, I don't know if you have heard of the inspire sight but there is one lady on there that was having severe fatigue and her doctor prescribed b-12 shots and she says it really helps. Maybe something to look into.
mae- I am so jealous! You will definitely need to post pictures.
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Thanks everyone. Bone pain started today! Geesh! Am frightened by the port surgery tomorrow. I had such a horrible experience with my first one that I am truly freaked out about it! They better put me out!!!! Can I insust
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Gracie-I would definitely insist on being put out. Especially since you had an awful experience the first time around. Good luck! I'll be praying for you! Sorry about your bone pain! I'm actually ate a sub today, even though I couldn't taste much of it. Tail end of "hell week". Not as dizzy today. Hopefully, that's the end of the diarrhea and dizzies for the week.
Bigbhome-Sorry you are having a hard time with the Xoleda. I hope lowering the dose helps (it did for me). I too agree that if you can, have someone else help with the animals when your husband recupes from the surgery. You will have enough taking care of him.
Micmel-Glad you had a good day with your DD. The comment about her being given the house though, just too much!
Divine-So sorry to hear about your foot. I hope it heals quickly!
Keetmom-We all need something to look forward too. You look forward to your trip in CO! We always get the travel insurance, just in case. We haven't had to use it yet, and I hope we never do.
Another 80s, crystal clear day. We are now in a drought (go figure). No rain forecasted until Tuesday. At least we don't have to mow the grass!
Have a wonderful evening everyone!
Lynne
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Can I insist? I really didn’t know I could, I just figured they might say no we don’t do that....which would really suck!!!
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Gracie, I would tell them it necessary. Best of luck tomorrow, I have no doubt you’ll do well.
I will definitely be posting concert pics. I might even dress up, not sure if I should go all out 50’s style dress with chiffon or a nice shirt and jeans.
Hi to everyone! 😀
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Thanjs Mae! Have fun!!
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Gracie, I am sorry that you are experiencing bone pain. I hope you have something to help relieve it. I will be thinking of you tomorrow. I hope your port surgery goes well. I am lifting you up in prayer.
Lynne, I lost a very long post. I had asked if you were nearing the end of your hell week. I am happy to see that you are. It must be disappointing to eat a sub without being able to taste it. I hope it wasn't a Nadeau's steak and cheese.
Grannax, I am glad that your DD is feeling better since her valve adjustment. I hold she continues to improve. It is too bad that your son has to wait so long to retake his exam. At least he has a job that he enjoys.
Divine, Do you know how you broke the bone in your foot? Will you need to wear a cast after surgery? Are you using crutches now to keep your weight off your foot? Is your surgery scheduled for the 20th?
Chicagoan, I don't worry about what I look like in a bathing suit. I know I will probably never see any of the other beach goers again. My parents used to tell me that our differences and even our perceived imperfections are characteristics that make each of us unique. Think how boring this world would be if we were all alike and perfect.
Bigbhome, I am sorry that Xeloda is causing you so much discomfort. Fatigue and nausea are a difficult combination. I hope the reduced dose helps to alleviate the SEs. I am a lurker on the Xeloda thread, and I have noticed that many people have required dose reduction. It makes me wonder why some doctors prescribe such high doses when lower doses are just as effective.
And now to you, Micmel, I was happy to read that you and your daughter have begun to repair, restore, and build upon your relationship. The house thing is just an example of how young adults think. She will continue to mature and understand the realities of life. In the meantime, enjoy each other. In an earlier post, you seemed very down. I know I have talked to you about this before, here and in a PM. I will reach out to you here one more time, then I will shut up. If you don't want to read my worlds, feel free to skip the rest of my post. To my untrained mind, you seem depressed. I know this is not something you chose for yourself. I know you have many riches to be happy about, but you are unable to enjoy them. You suffer from severe fatigue, lack of appetite, and loss of energy. These could be effects of your medication. They could also be from depression. Of course, the depression itself could be a SE of medication. I wish that some wonderful, kind, skilled doctor would meet with you and review every one of those 18 or 19 pills you take every day. I wish he/she would take the time to listen to every one of the symptoms that haunt you daily. I wish that she/he would then come up with a plan to fix everything . I wish that he/she would continue to monitor you to confirm improvement. I wish you could then enjoy life again. Unfortunately, I feel powerless and cannot help. One other thing you mentioned in that post is that you feel like you are searching for an inner peace or comfort. Some people find it in their faith, but that isn't the case for you. Maybe you can find that inner peace outside of yourself rather than inside. Maybe it sounds crazy, but have you thought of volunteering for a good cause? It is just a thought and may not be for you at all, but I am mentioning it anyway. Some require as little as a couple hours a week. Maybe by helping others you can help yourself. Examples: Red Criss takes all sorts of volunteers to serve snacks, do administrative work, schedule blood drives, plan disaster kits; Meals on Wheels needs driver; nursing homes need people to play cards, board games bingo or just talk to patients; schools need people to help in the library, the office, and the classrooms; food banks need people to sort and inventory food; hospitals need help in gift shop, data entry, general office duties, distributing newspapers, Wild life organizations need people to observe wildlife, trees, and plants in community; clothes pantries need people to sort donated clothing; museums need people to guide visitors and answer questions. There is no end to opportunities. Okay, I am done.
I picked the first ripe tomato from my garden today. To make it even better, the squirrels and chipmonks hadn't taken any bites from it. Here is a picture.
Hugs and prayers from, Lynne
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Thanks so much, 50’s. I do have some lortabs for pain. From what I’ve read, hopefully it’s only a day or two. Thank you so much for the prayers! You know you are always in mine too!!! beautiful tomato!!!! Nothing better than a vine picked tomato!!!!
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Micmel, I am back. You know that I can't keep quiet. I have been thinking of your quest for inner peace and comfort. Have you tried meditation? I find it helpful. It is free. It is easy. It can be done at any time and any place. Well, not while you are driving. I am sure you can find something on line to get you started. If not, there are plenty of books. I began meditation at work. My company had a weekly meditation program - by phone, believe it or not. We could call into a conference number and a trained leader would run the sessions.I would call in from my desk if I was in the office, and once I started working from home, I called from here. My job was stressful, and the sessions helped. It was great, and I have been practicing meditation ever since.
Hugs and prayers from, Lynne
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Micmel, also here for meditation! I put the “calm” app on my phone and love it. Sometimes I fall asleep to the meditations but other times just get really relaxed! It might be worth a try! Love ya!!
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I would recommend Calm too or Headspace, which has several free guided meditation and breathing exercises.
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Gracie, I hope your bone pain is a little better! I too have heard people rave about the calm app. I saw the commercial on tv for it and even that is calming! I'm going to check it out!! Lynne, that tomato is perfect!!! Beautiful color and shape! Love tomato's off of the vine. We stopped growing them a few years ago because the animals ate through them. Illimae, I so admire how much fun you are having and your ability to go go go, I am lacking in that lately! Micmel, hope you are feeling better! I'm glad you had a nice day with your daughter! I too had to sit in the furniture department of Boscovs for 45 minutes while sweat poured out of me and ran down my beet red face. I felt like everyone was staring at me and of course who comes along but my sons girlfriend father who works there. Very embarrassing!
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Micmel, I've been thinking of you too and was wondering if or how to post to you since I'm a newbie here. I echo 50sgirl's gently expressed posts. You have certainly had so much going on and add this disease and its management to it and anyone would be overwhelmed. You wrote that you are nead and I so want you to feel able to enjoy that status, even knowing you have the challenges of long term se's and some that come and go. Please ask your doctor for help or a referral to others on the team who have experience with patients with long term illness. Someone who's not in the middle of the storm needs to take a look at the whole situation: meds, appetite and food, energy, sleep, and the upheaval in the family which naturally shocked your whole system.
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Best B52 lyrics: ‘why won’t you dance with me, I’m not no limberger!’
Trivia: Tin roof! rusted....was improvised, they didn’t know what to fill with and went for something random. Random that’s iconic.
Thanks for posting Divine, glad to know I’m not the only one that breaks into song at any given moment. ;
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Micmel and all of you moving through your days with burdens or triumphs, I come here to see the Real Face of Cancer, a face, like a Medusa, that changes. When I think about how I felt last year, I realize that I have some excellent days. The moment I realize I have had an excellent day I remember that I have nothing between me and a recurrence but a tamoxifen tablet and I immediately feel unsafe, vulnerable, exposed, hunted, deer-in-headlights. Things are good, now. But I would be a bloody fool to count on it staying this way for any length of time because I just don't know. No one does.
Micmel, I have had dark, despairing thoughts where the enormity of the blackness is a thick blanket I can't get out from under. But, as I have said before, the sun will find you. One small beam of light will catch your eye and you'll think, huh, there is light after all. It will drain your energy if you grope around seeking the light. Instead, be still, rest, be ready, when you see it, like glimpsing a fairy in the woods on a spring day, say quietly to your soul, look, over there, shhh, don't move or you'll scare it, a fairy! So pretty! She shines and sparkles. Seeing a fairy does not make everything in your life better, but it's a little bit of magic to hold in your heart until the next bit of magic comes along. And it will. You have to have eyes to see it. Same with the light that will shine and momentarily lift your heart. I know the blackness feels like hell. In fact it is my personal belief that that blackness IS hell. The absence of light is hell. But light wins. Every time. I know you will see sparks and flashes, glimpses and fairies. I know it. I believe it for you. I am waiting with you in quiet, gentle anticipation. And love.
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