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TEAM DEADPOOL


hellkatbaby

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Welp - I guess it's time to start the blog and not clog up the threads: This is my 2nd try but it doesn't seem to show up?? But anyhow!!

 

TEAM DEADPOOL is officially GAME ON! 

 

Today was another good day! I'm 1/2 way through my radiation treatments with only 5 days to go (excluding weekends)! After this AM's treatment I met back with my radiation/oncology team. They have reduced my steroid intake to only 1 pill a day which means the treatments are doing their job. They plan to wait 60-90 days for my next MRI to make sure everything is A-OK and that is the best waiting time to get the best results. He knew they were waiting on that 'thumbprint' gene however had not known that it was confirmed and immediately ran out to check my files. When he came back he seemed as relieved as we did yesterday! 

 

He wanted to make sure I wasn't having any side effects or vision changes (which I haven't) and advised again that in the up-coming weeks I may start to see my hair falling out. Again - small potatoes but considering I have long thick hair and they keep looking at it like 'we just don't know' and I also feel they don't want me to 'lose' site of the fact that it may or will happen just so I'm prepared. But in all honesty I do expect to lose it - and that's OK and the least of my worries at this point. All my vitals were totally normal and now that I'm down to just the 1 steroid a day sleep should hopefully come a lot easier now and I'll be over the whole 'zinging' around with this unfiltered energy at odd hours of the night. Fingers crossed!!

 

I made my 1st frozen fruit juice pops this AM and got to try them when we got back - I have to say I'm impressed with myself lol. My mom even liked them and said it took her sweet tooth edge away. Later on I cut up some kiwi and had her try it, she actually ended up stopping by the store on her way home to pick some up she liked it so much! You go mamma!! 

Tonight we dine on whole wheat spaghetti - this will be a 1st for me so we'll see how it goes. A nice fresh salad mix with berries, nuts, a tad of parm cheese and homemade dressing! MMMM - cant wait!! 

 

I'm just feeling really good!! I didn't push today and even rested and recharged which was what I needed as the last thing I need to do is burn myself out. All positive thoughts and trying to find that balance with everything seems to be pulling together at last. Gearing up for the next level so to speak. 

 

I hope everyone has a great night and no matter where you are in this battle never give up - never give in or Team Deadpool will come kick your ASS!!!!

 

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I declare today "recliner day" and prescribe a good book or some bad t.v., along with "breakfast in recliner" cooked by BF the chef, and a couple of dogs at your feet making sure nothing hits the floor.  Enjoy a lazy day in your uncluttered house and hopefully the CBD will help get your sleep back on track.  

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9 hours ago, Jordan7 said:

I declare today "recliner day" and prescribe a good book or some bad t.v., along with "breakfast in recliner" cooked by BF the chef, and a couple of dogs at your feet making sure nothing hits the floor.  Enjoy a lazy day in your uncluttered house and hopefully the CBD will help get your sleep back on track.  

 

And that's pretty much how the day went lol! Grease has been on and even though I've seen it a million times I could watch it a million more. 

 

I do think the CBD helped. I used to smoke weed recreationally and of course it always gave me a good sleep and chilled me out lol. So I did have her pick me up a bottle that way I can have 1 to take at night and then 1/4 or 1/2 the dose for my anxiety during the day as I ween off the Xanax. Also doing my rabbit hole researching found that there is no interaction between the Tagrisso and medical marijuana so then dug into the case studies and basically it came down to nothing but beneficial.

And being in the state of Fl. I'm eligible to obtain my card based on my dx. Of course I plan to let my Dr. know, not sure if he'll be pro or con but again that's where I get to step in as my own 'patient advocate' and make my own decision and not be denied treatment. Again it's just something that makes sense vs taking a bunch of synthetics for this or that when there's something natural that will do it all. 

 

I reached out to my neighbor today who went through it with breast cancer and she was so glad I did and I am too. I really needed someone close to talk to and apparently she had been waiting for me to reach out. We talked for a good hour or so and I just felt so much better afterwards. It helps when someone 'gets it'. She's also retired and the caretaker for her husband (dementia and dialysis) so she's been feeling isolated and lonely and would enjoy spending time with someone.  So we agreed we'd support each other.   Starting tomorrow we are going to start a ritual of walking every AM before it gets too hot.  We both need the exercise and now have a buddy to do it with. Then in the afternoons her H doesn't have treatments or my family isn't here we'll get together and play board games or cards. She's a big scrabble fan so that works for me and helps keep the mind sharp. But I think all and all we were both relieved to know that were not alone in our situations and that two are better than one and we can encourage each other.

 

Hopefully tonight I sleep good. I hope everyone has a goodnight and remember NOPE!!! We can do this!! 

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I am so glad you connected with your neighbor.  Sounds like you both will be supporting each other.  Hellkat, you are doing awesome.  

I don't think your doctor will have a problem with the cannabis.  I am finding more and more people who have had there doctors recommend it.  

Sleep well tonight.

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11 hours ago, Linda Thomas said:

I don't think your doctor will have a problem with the cannabis.  I am finding more and more people who have had there doctors recommend it

 

I wouldn't think so either Linda. Doing my research it seems most Dr's are now more pro than anything. I will say I don't feel as fatigued as I had the past few days which is great! That lack of sleep wasn't helping either so hopefully it will get all turned around. I'm sure I'll have the days that hit me harder than others but at least now I know what to expect now and how to manage it. One day at a time. 

 

Alright so Team Deadpool back in action! We took a nice 20 min walk this morning - not bad for our 1st day. I'm definitely taking some 1lb weights to carry tomorrow, keep those legs and arms in action!! Her hip was giving her problems near the end so we might take it a bit slower tomorrow. Every day is progress. I figured today I would just pace myself. Rest when needed and be active when I can. Be smart and listen to my body. 

 

Starting to re-think a few things I did on impulse such as the wigs. I don't really need that 2nd wig at all. That was definitely an impulse order. Since I haven't done the try on yet it hasn't been billed to my insurance she can return it and I can save the benefit for later in the year if I decide. Just trying to be smarter on some of my decisions and not go off emotions wrapped up in the moment. 

 

So here's to the rest of the day and what it might bring. No big plans today so I'll just take it by the seat of the pants and see where it takes me! 

 

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Sending good thoughts your way and wishing you the very best (and hopefully some sense of relief) as you start Round 2 of this battle tomorrow.  I hope you've been able to rest up along with getting some healthful eating and exercise in to put yourself in a good mental and physical place as you continue to plow through all the obstacles.  Cheers to you and to winning this battle one day at a time. 

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Just my thoughts for you here about the wig thing .....................

My neighbor has lung cancer and has been in treatments for the past year. She wears a wig when she goes out and I have had interactions with her both with and without her wig on. I prefer to see her without it because to me it represents the courage she has in fighting her cancer with tenacity and complete dignity. I do understand wanting a wig for when one goes out in general public when you are exposed to people you don't know or have any connection with but, I think that maybe those who know you and what you are going through might have a very different perspective. I know it inspires me when I see her in her natural state.

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I actually canceled the wig and rarely wear the one I did get. I really think I was just emotionally all over the place at the time I ordered them. I've found that wearing a turban or scarf is way more comfortable and cooler and are my go to when I go out. When around my family I  just rock the natural bald look - well stubbly look at this point lol. 

 

I know it's been a while since I've updated my blog so here's a bit of what's been going on:

 

This Saturday will be 1 wk since I've been on the chemo pill Tagrisso and so far so good. I go back in a week for them to do an EKG and labs to make sure all is going A-OK. The fatigue of the radiation seems to be wearing off as I've had more energy this week however the loss of appetite is still there even when my stomach growls. I make sure that I have protein shakes on hand and try to eat several small meals through out the day. At first I was more worried about eating all 'good foods' but for now I just eat what I want so I'm not losing weight. I figure better something than nothing. I also set up an appt. to speak with their counselors hoping they would be a good sounding board for me, I've never been to one so not sure what to expect.  

 

In the mean time and in between time we try to get out at least 3x during the week which is perfect. On the off days we just Netflix and chill. My sister is joining me for yoga classes for cancer patients at our local YMCA and a mediation class once a week. We also booked a trip to Orlando in October for a girls only trip so looking forward to that. Other than that I'm just taking it all day by day and keeping up the good fight!  I know theres alot forgetting and will try to update more as I go along. 

 

 

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It is wonderful to hear from you.  I do know you are resting and your body is healing.  It is important to direct your strength where it is needed.  I think talking to a counselor is a great idea.  Sometimes it is easier to bounce your feelings off someone who is trained in listening.  Your family is emotionally invested in your illness and may find it difficult to talk with you.

It sounds like you are incredibly close with your sister.  You are so lucky to have her.  The Yoga classes sound great.  It is important to stay relaxed and free of stress while you are battling this illness.   I will continue to pray for you and the results of your upcoming appointment.  

x

Linda

 

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Thank you for the update hellkat, I'm glad that the chemo pill hasn't caused extra side effects. And I'm glad you're getting your energy back. Just remember to listen to your body and not overdo it.

I drink Boost plus to help me gain and keep weight on. They have 360 calories each plus lots of protein and vitamins. 

Orlando sounds like a fun time with your sis, the weather should be nicer then too :)

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I used to keep my hair very very short, very short and loved that people would rub my scalp.  It felt so good.

Glad you are communicating.  Glad you are here.

Stay focused.  You win.

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Hey everyone! I know it's been a while since my last update but I'm still hanging in there! It hasn't been much of a good few weeks but I'm trying to make the best of it. Sometimes it's hard to remember it's only been 2 months since my diagnosis because it feels like it's been all consuming.  I know most of it are from the side effects of the radiation and the chemo pill and some of it just my own state of mind.

 

I went to have blood work and an EKG done Wednesday and waiting on the results from that. As far as my side effects the fatigue comes and goes but the appetite thing is still an issue. Somedays I can eat like a pig and others I can barely stomach shoving something in my mouth which is where the protein drinks come in handy. Some days I'm really upbeat and ready to go and others I don't feel like doing much of anything and those are the days I really get down, like I feel guilty for not doing anything. Some days I get mad and angry at myself and some days I just want to cry. In other words I'm emotionally all over the place. I did go see a therapist who told me everything I was feeling was normal but that she didn't think I needed to come back for anymore sessions unless I wanted to - which to me meant you totally suck as a therapist and we obviously did not connect. I've been debating on calling back and asking for a different therapist but it just left such a bad taste in my mouth I don't even want to bother. But I guess I'm lucky in that those are the only side effects I've had. 

 

I've also spent the last 2 weeks fighting with my work which has worked my last nerve. The Dr's don't want me going back until they do the next MRI which wont be until November and my work wanted me back Sept 2nd and decided to take me off short term and put me on a leave of absence meaning I wasn't getting paid. So I had to request the higher ups of the higher ups step in and get something done which was a huge stressor and pain in the ass. It wasn't until yesterday they finally agreed with the Dr's and put me back on short term and said they'd cut me a check come Monday (we'll see). I swear if I could have reached thru the phone and choked these people out I would have.  It made no sense that people on maternity leave get more time with no questions asked and in my situation they just kept jerking me around asking for more medical documentation. It still pisses me off just thinking of it. 

 

But on the bright side of things I've been spending lots of time with my family, especially my sis. I wish I could spend more time with my son but he works such long hours that I might get 1 day a week with him so I always try and make the best of it when I'm with him. 

 

Other than that I'm taking it all day by day. I just need to dig in and buck up!! 

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Hellkatbaby, it is so great to hear from you.  Cut yourself some slack on how you are feeling.  It is normal for your emotions to be all over place. 

Try to start your day with the confidence that you are beating this battle.  Listen to your body each day.  It is letting you know what you need at the moment. 

I do think you should try another therapist.  Sometimes it takes clicking with the right person.  Lean on that family.  Love is the best medicine.

Know that I continue to pray for you and hope you can start seeing some positive results.

X

Linda

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Great to hear from you hellkat, sorry about your work causing you added stress you don't need 😞 I agree with Linda on both the listening to your body and finding another therapist. It's important right now for you to be able to get your feelings out to someone neutral. Xoxo

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Thanks for letting us know what's going on in your life Hellkat. We do worry when we don't hear from people that we feel a connection with. Sorry to hear your work is jerking you around, or at least was. Hopefully that has been resolved to your benefit now. Glad you are still quit as well. You have a lot on your plate so it's amazing that you have been able to do such a great job with your quit at the same time - coming up 2 months now on Monday :)  Now there's something to celebrate!

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Hey everyone!!! I know it's been a while but I had some butt kicking to do - I was down but not out and now I'm back with a vengeance and 6 months smoke free!! Yea baby!

 

My last scans were in Nov and showed that everything is shrinking and some even resolved so the target therapy is working.  All my lymph nodes are back to normal (BTW I had no clue we had lymph nodes in our chest near our lungs). But there was one they were really worried about because it was pretty large so they were really excited to see that one go right back to normal w/in that short of time. Tomorrow I go back for my 2nd set of scans and hopefully it will all be good things!

 

I've been working from home since they gave me the ok after they saw my scans and it has been good medicine. It seemed once I got back into my routine my appetite picked up, my mood picked up and I have more energy. Considering it all I feel really good!!

 

I hope everyone is doing good with their quit! It's hard and to this day I will still get the urge and then it passes! NOPE! 

 

 

 

 

 

 

 

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Oh Hellkat.   I have thought of you often and wondered how you were doing.  I have prayed that your health would improve.

I am so thrilled to read this.   You are one brave soul and I am so proud of your butt kicking.  Isn't life wonderful without smokes!

It is amazing what the medical field can do now a days.  I am confident you are in good hand. 

I hope, now that you are feeling better you can visit us more often.

Take care 

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Thank you Linda - it really is good to 'be back'. And life is way much better smoke free even given all I'm going through. I  got the results of my 2nd scan today and everything is STILL SHRINKING!! And the fight continues lol!

 

 

 

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Really good to hear from you !  I think about you often too and send love and light out there for you to use.

So happy you have such good news.

Stay strong.  Eat well.

and Happy Birthday, you !

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Wow I hate to see so many people getting sick on here. I know it's that time of year - but it really does suck. My own BF sounds like he's about to keel over so I've basically been living in my office/spare room for almost a week. Leaving nothing to chance and taking stock in Lysol lol. But I hope everyone gets well soon. 

 

So during my time of not being able to do my old hobbies - soaping etc. I've somehow gotten into fish 🐠 and aquaponics. It started out so innocently with me just wanting a betta for my desk however my BF said just get a 10 gallon tank - so I did. But I couldn't stop thinking about that betta, so went out and got a 1.5 gallon cube for my desk so I could watch him swim while I worked. Well 1 quickly turned into I need another one - so now I have 3 tanks 🙄. At first I just had the plastic plants and decorations then took all that out and added live plants for an aqua scape got some driftwood.  I'm hooked - It's like smoking I want just one more then I'll stop! Lucky I don't have the space for it because I'd go broke real quick. Went to get dog food the other day and ended up checking out their 55 gallon tanks lol - I had to pull myself away. But I really enjoy it, it's like therapy almost. 

 

My hair - the past 2 weeks it just sort of took off and the sides and back growing in faster than the top but not enough that you still cant see my scalp so maybe in another month or so I'll have scalp coverage. I was hoping by summer I'd have enough to do something like a pixie but only time will tell. I will say it's much easier to wash lol.

 

My next visits are in March for an EKG and then in May for another lung scan. I have finally come to terms with the fact that I will have to have these scans and tests for the rest of my life - and that's fine. As long as it's a good quality life vs quantity. Because I hated feeling as if there was so much to do and so little time to do it. So I'm learning to make time for the things I enjoy. In other words it's time to start living and not dwelling. It's not easy as I have my breakdown days but that's ok - I look at it as a whole body release and just give into it and then I feel better.

 

Oh and here's my doodlebug getting ready for Valentines day - begging for hugs and treats lol. 

 

 

 

 

 

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hellkatbaby, he is adorable.  Is he a Rottweiler?    Fish tanks are a great hobby.  There is one at my doctors' office and I find it to be so relaxing.  My son is also into them and actually grows the plants to sell.  Be prepared, that hair may come in curly.  My friend had that happen after treatments.  I am so glad to hear you are doing so well.  It is amazing the new medical treatments they have.  You are doing so great.  Stay strong and keep healing.

 

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22 hours ago, Linda Thomas said:

hellkatbaby, he is adorable.  Is he a Rottweiler?    Fish tanks are a great hobby.  There is one at my doctors' office and I find it to be so relaxing.  My son is also into them and actually grows the plants to sell.  

 

He is a Rottie in every way! He's a licker and a leaner and stick by your side and under your feet food cleaner lol. He pretty much loves everyone once he gets to know them - but he's very territorial and HATES the mailman lol.  Ahhh the fish and plants (it really is zen)  Does he sell them online or just local? I've actually been doing a lot of research on what plants go best with what fish/light/temp/tank size etc. so much info but I know that 55 gallon (maybe bigger) will be mine mwa-ha-ha!

 

22 hours ago, Linda Thomas said:

Be prepared, that hair may come in curly.  My friend had that happen after treatments.  I am so glad to hear you are doing so well.  It is amazing the new medical treatments they have. 

 

I have heard that. My neighbors actually came back thicker and curley. I was reading an article on the actress Selma Blair and how she chose radiation to help with her MS. She did lose her hair and said that it would either come back a different color or texture and she would just keep shaving it until it came back the color she wanted lol. I'll just be happy it's back - I'm really excited to see what cool pixie would look like. I've always had long hair so I may decide I like it short. Maybe something like this as far as the tops and sides - love that color. Pic is not me of course tho I wish it were lol. 

 

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Edited by hellkatbaby
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