October 2019 Chemo Club Members
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Michelle94904 - it is great to have a twin to go through this process with! I am sorry the last couple of days have been rough for you with SEs. You seem to have a great attitude and I love your gifs. And you are halfway there!
I cut my hair super short yesterday - my first, but not last pixie cut - it is helping me get mentally prepared for things.
Everyone - it is good to hear updates from folks and learn from you. I'll report back after my first round of TC next Tuesday. I am getting Neulasta with each round, so now am a little anxious about the side effects.
In particular, I am anxious about chemobrain. I am going to bring some brain puzzles with me day and try to do similar things when back at home, but I know these are just plans and I may only be able to sleep and lay on the couch.
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after I took my 6th shot of Filgrastim on Wednesday night, I had severe pain in my upper thighs and tailbone all night and the next day. It was excruciating. I contacted my doctor and asked for pain meds. I am happy to report I finally got a great nights sleep and feel so much better. And I don’t need to take the last shot. My labs were normal. So they may make some adjustments to my doses next time. Was the hardest week I have endured. I have about two weeks before chemo #2.
I hope to hydrate more as suggested by earlier fighters. Bottled water seems to be easier to drink. And I have Powerade ready. Thanks for everyone’s strength- it inspires me to push thru!
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hi everyone, I’mheaded towards my second round of six of TC this Wednesday, has everyone that’s gone through two or more rounds experienced pretty much the same side effects as the first round? I handled round one pretty well with the exception of bone pain and I’m wondering if I should brace myself for something new. I’m day 18 from the first round and sure enough on day 14 my hair started shedding in large amounts. I’m using the Paxman system and am worried at this rate, I won’t have any more hair. For me, the hair loss has been the worst of it by far.
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I'm only day 4 since my first TC and having some bone pain from Neulasta? but 1-2 Aleve tablets help. I'm having tiny, jerky feelings in both legs that it's hard to relax, esp trying to sleep at night. I'm done with the dexamethasone steroid x5 days thank goodness. It really had me wired. Benadryl helped me one night to sleep, but I hate to rely on more meds. I'm realizing I think it's the nervous system stuff after having some numbness of the lips and mouth today. Gotta report this to my MO. It's raining all day, so I think I'll get on the treadmill today to get some ya-yas out.... Taking Senna for constipation.
I did get a wig (my insurance paid for) from a boutique at my cancer center. Some lovely ladies helped me try on and choose. I also got a "fringe" wig that goes under hats, and both look very similar to my hair now. Also, nice pre-tied scarves off Amazon that are super comfy and cute and I think I'll wear them more often. At least it'll be winter in Ohio and cold, so the wig won't be too hot.
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Hello Michelle and all who have joined in for the October Chemo Club! I am chiming in from the Southern Oregon area on this beautiful and crispy Saturday night.
I am happy to find a place to connect with others sharing this experience. I actually am a bit late to the party, having my first Chemo on 10/17. Has anyone else been pretty much continuously sick since chemo? Today makes 9 days since I had chemo and although I am definitely now much better, it was a rough one for sure! I had friends who put together a chemo bag and was accompanied by my husband during chemo. It was probably the second or third day that I experienced the full effect. Anyway, just wondering if I can expect to be sick the majority of time during treatment. I work full time and am planning on returning to work this coming Monday—fingers crossed.
I was originally dx with stage 1A having a 1 cm mass, but the SN was involved (2.2 mm) landing me smack dab at stage 2A. My ONKO score was 22 and I have an extensive family history of BC, so we went from “just” radiation to viola! Bring on the chemo.
Eh, well, what are ya gonna do? Just gotta keep on keepin” on.
Looking forward to getting to know everyone in our group thru sharing this unfortunate journey together. Very thankful not to be alone
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Hello Sisters - almost morning on the East Coast and I’m on day 4 post my second chemo of Taxotere & Cytoxan with the Neulasta OnPro patch. I’ve mirrored the same side effects as my first infusion. My “trouble” seems to start on Day 3 (over the weekend of course). The mental fog rolls in, I’m crazy tired, and again, a fever kicks in. I took Claritin for a couple of days to help with the Neulasta bone pain, and it did the trick. I’ve been fortunate in that I don’t have any nausea or diarrhea, just constipation. I’m going to greet the sunrise (or perhaps clouds) today with a dose of Sennokot-S. From my first chemo, it took me about 6 days to feel human again, and I improved every day thereafter. Hoping I can keep the same schedule.
Stay strong, keep posting. The experiences are so valuable!
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just a slight heads up---fever can be a sign of infection- always a risk with post chemo days--what are you running? your team would have given you a threshold of fever limit to report- usually around 100--keep a close watch
I also took claritin with the neulasta though continued it from 2 days prior to 2 days after and never had bone pain
I took the anti nausea med round the clock for about 4 days and never had nausea at all-did have the fatigue but felt I pretty much breezed thru the infusions
Oh on day 8- after each round I developed sudden explosive diarrhea that lasted about 4 hours-learned quickly to stay home close to the bathroom!--K
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Kerid1-- good morning- there is a really helpful forum on here for cold cap users -urge you to join that one too-I cold capped with Penguin for 4 rounds of tc and saved 75% of my hair--lots of sisters here and helpful tips for the best results--you can do this and it will be well worth it--hang in there,kaylie
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Michelle94904 ,just a note- I used Penguin with great results-if you go with them you can rent used caps for 300/month -are fine just used prior and cleaned-sanitized rather than unused ones at 500/month..th company wont offer this info up front- you have to ask-hang in there you will get thru this and carry on--Kaylie
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Hi guys, well day 6 post 2nd AC chemo. Every thing is going good my WBC even bounced back form 2.5 to 6 in a week. ( WOOWOO) I think my MO will be pleased. I want to go back to the gym, but was afraid with my WBC being low. With it at a 6 I should be OK. So Water Arobics here I come. Till next week when it should tank again, but need to make hay while the sun is shining.
Before every chemo treatment they give me a premed called Civanti it's suppose to be long acting anti nausea med. If so It sure works. Like I've said I have had no nausea SE from my treatment, I still take the oral meds for the first two days, just to be on the safe side, but by day 3 it's all good.
Keep the faith and stay strong we got this.
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I got wonderful news on Thursday: my liver tests were ALL normal. My liver doc thinks the problem was from chemo, so I am blessed that the new protocol (Abraxane and Herceptin) is not affecting my liver.
I had my third week of AH on Thursday and SE are still manageable: mild nausea, mild numbness in my toes, “ping pong” pain, dry skin, taste changes, bloody nose, and some GI issues. The new SE is a temporary but recurrent twitch in my right eyelid. It is not painful, but it is very annoying! Does anyone else have that?
I am grateful that I don’t have the diarrhea that I had when I took Taxotere, but I do find that I need to be fairly close to a bathroom. I’m also using a LOT of Febreeze lately. I would add that to a “chemo shopping list”. LOL
Thanks for posting everyone. I enjoy reading about everyone’s experiences. RadQueen, I was sorry to hear about the loss of your dear furry friend. It breaks our hearts. Think of tears as a badge of courage to love again while we mourn the loss and give ourselves time to cherish the time that we had together.
To those who are losing their hair, we can mourn that loss as well, but for me, proactive acceptance really helped me. I buzzed and bought all the replacement stuff early. It helped me move on to the new normal. After some initial scalp pain and some acne, things have settled down now. Since the stubble is now very patchy, I’m planning to shave my head soon (with help from my DH) to make it look a bit better. It only bothers me a little now to see myself in the mirror, My eyebrows and lashes are thin but still there. I’m praying they stay!
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Well, this stuff is getting real for me now. I've read about SEs but now that they are really happening to me, it seems so unreal. I'm day 5 after first TC and strung out. The steroids I took 5 days (to decrease allergic reaction and nausea) are finally out of my system. Thank God, because i felt like I was on speed. I had lots of energy and got lots of housework, organizing and cooking done though! The price was too big to pay because my sleep was so disrupted and I had a lot of anxiety. I'll report this to my MO before the next round to see if the dose can be decreased. Yesterday was the first morning without them and I finally slept like a baby after midnight last night. What a relief.:) I've had no nausea, have a good appetite, but am taking Colace and Sennakot for constipation (tmi, but it's just little, round balls all the time!). Yesterday, my mouth and lips started with tingling and numbness and everything tastes strange. Still hydrating with 3 liters water daily. Gonna take a fall weather walk with DH and doggie; pampered myself with foot, hand and nail care last night and plan on a bath and lotion session later. I expect my hair will fall out and have prepared (wigs, hats, scarves), but know that there's no way I can be ready emotionally for that.
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Just made and ate a plate of eggs and toast. This is the first real food I've had in 4 days and it feels amazing! It seems crazy that such a small accomplishment can seem so big :-)
I had round 2 A/C on Wednesday and the after affects were way worse than round 1. Do the side affects get worse each round? I was sooo not prepared for the last 4 days and I don't want to get surprised again.
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RadQueen,
Thanks for the post! Best wishes!
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DMHGF, my second round of Taxotere-Carboplatin-Herceptin-Perjeta was not noticeably different. Maybe there was a bit more diarrhea but I also had better drugs to combat that SE.
For my new chemo, Abraxane-Herceptin, I’ve noticed that my neuropathy is continuing but it is not significantly worse. Most of my other SEs also seem about the same.
I’m not sure if it is chemo related or not, but my drive to get work done seems to have left me. I did basically nothing all weekend despite mountains of stuff piling up. I did make it to work today, but I am feeling more fatigue then I remember after week 1 and 2. I am hoping that my “week off” will return at least some of my drive to get things done.
At the risk of reinforcing myprocrastination, I just keep telling myself that I can strive to do better tomorrow. 😃
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Went in today for my first round of TC and had a severe allergic reaction in the first minute the taxotere was in my system, even with the steroids I took yesterday and this morning via pill and the ones in my IV this morning. I had 8 people in my room in the next minute and they stopped the drip and gave me more steroids. Then I talked with my MO and she decided to switch me to CMF - she didn't want to risk another, possibly larger allergic reaction and didn't think the pathology of a 9mm tumor and an oncotype of 29 warrented AC - the risks didn't outweigh the benefits there. She said it wasn't to an additive in the drug, which can happen, but to the taxotere itself. Feeling good about this decision, although bummed that my chemo has moved from 3 months to 6 months. Means less SEs and seems safer for me. I am feeling good about my MO, which is really positive.
cyathea: It is good to give yourself permission to take it easy. I have been working with my therapist on this very issue, as this whole process has taken me up and down with motivation at work.
Vicki3: I agree - it so great to have this community as it helps me feel less alone. Thanks to Michelle94904 for kicking it off!
To everyone: wishing you the best. Take good care.
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Okay. So it's day 7 from my first TC infusion. Side effects were quite strong, but it all slowly gets back on tracks. First of all nausea and fatigue. These guys I tolerate the least, and not only from chemo but any time I have got them previously too. Like pregnancy nausea but 20 times stronger. For some reasons over the counter anti nausea stuff does not work for me: I am able to get it but as an after-effect there is a loong unconscious sleep for 12 hours even after the single pill. So I stay away from regular anti nausea pills. They prescribed Metoclopramide instead and it is tolerated better fortunately. Hair loss.. It all started to shed already and got super itchy. So I buzzed it off.
Filgrastim shots: bone pain was quite bad first three shots. Now it is getting better and I am off Tylenol 3.
Hope my experience can be helpful to someone. Hugs to everyone, keep fighting sisters.
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Hi lovelies, so day 9 post second AC infusion. So far so good no SE except the loss of my hair on my head. Went to my hubbies barber yesterday and buzzed the rest off. It took longer than I thought it would, there was still a lot of hair left but it looked so bad I just couldn't handle it any more. Now it's just stubble, he said not to shave it cause it would cause razor burn. Boy is my scalp white...LOL. I dont think this part of my body has ever seen direct sun light... I have some tanning lotion that I need to start putting on my head if I don't want to look like Pfister from the Adams Family. Don't worry will wear caps, hats or wigs when outside, I know it can be sun burnt so easily, I do that anyway the joys of being a redhead.
Went to my MO yesterday, and I was right he was pleased as punch about my labs and how I was doing. Got my prescription for the Emla cream. Hope that helps when the have to access my port again. I also had him wright me one for Lattisse for my eye lashes and brows. Will see how that works. He had never heard of it. I guess because he's a guy. I asked if it was normal for a pt. on AC chemo to have labs as good as mine were. The only real drop I had was my WBC and all my other counts went up and by week 3 the WBC also went up. He said because I had such a strong immune system and was otherwise healthy my bone marrow was keeping up and hopefully should stay that way. That makes me fell better but I still have a long way to go with 2 more AC and then 12 of the T. He still doesn't want me anywhere near the hospital.
Aogg so sorry to hear about your reaction. That must have been scary. Hopefully the CMF will be milder.
Kaaadams, you got this just remember you are not alone, my hair started to fall about 19 days post 1st infusion its hard but it will grow back..That's what I keep telling myself LOL. Now that I had it buzzed off I'm dealing with it. My hubbie bless him thinks it's hot.. Sometime I wounder about that man. I have about 6 wigs all different colors and styles, all synthetic so not the best but fun. Got some from Amazon but most came from Wish. Don't think I paid more than 12.00 for any of them including shipping. Also bought the cute little turbans from wish most were less than 5.00 with shipping.. The only bad part about Wish is that it takes almost 30 days for your stuff to arrive. I originally thought I was going to have chemo before my BMX so I had ordered them in July. So now I have them in the spare bedroom I walk in and say do I want to be blond, redhed or brunette today? Then freak my hubbie out. He had never seen me as a blond before..LOL Cant wait to do the brunette one either its long with ringletts kinda a Scarlette O'Herra look, Well fiddle-dede I guess I"ll just have to think about that Tomorrow.....
Blessings to all....
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RadQueen,
Oh it is so good! Your body system works so well, and pray it will keep going.
I will follow your dairy when my journey starts, thanks for the post!
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Hi all!!
Im starting 6 rounds of TCHP tomorrow. Just squeaked into the October group. I had my surgery back in August but had several complications during the healing process so I’m starting chemo several weeks later than my MO wished.
I plan on using the cold cloves and socks, having them in the freezer getting ready for tomorrow.
Lots of nerves and anxiety! Not my usual feelings but I’m a planner and there’s so many unknowns about how I will feel through this step. I’ve tried to plan for every eventuality but I know that’s not really possible.
Thank you for starting this group and posting. I look forward to getting to know you all
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I finished up Taxol and carboplatin last Friday, week off, next week AC along with trial drug. It was nice not having to get blood work and going to infusion center today. Meeting up with other breast cancer friends and going to do a YOGA class. Should be fun. Lots of laughs anyways. Halloween was a blast. One of my favorite holidays seeing all the kids dressed up in different costumes. I had over 100 kids, very unusual. Ran out of candy, gave out dollar bills. The older kids loved that. Got my Flu Vaccine yesterday. Met up with some of my co-workers. Gosh when your not exhausted you can do so much. Very windy and blustery here in RI. Lost power during night. Supposed to be cold tonight. Good thing is most of leaves are gone. Hubby at our Florida home checking it out. Will be home week before Christmas. Don't worry I have extended family, and friends here for me. And of course my dog. Big ass Golden retriever who hogs the bed.
What side effects should I be expecting after receiving AC? I know red urine and bone pain. Does taking claritin help?
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Hello October Club Sisters - we made it! We made it thru our October treatments !! I’ve learned so much from these postings, decided to summarize my experiences in hopes it will help some one else! From my first treatment (Taxotere & Cytoxan), it took about 6 days to start feeling like myself again. After this treatment, it’s taken about 8 days. My taste buds are starting to come back, I feel pretty good, and I can actually start AND finish a task / project! Both treatments, I’ve had a fever that started on day 3 (a Saturday wouldn’t you know) and ended on Tuesday morning. I could set my watch on the fever cycle. In both instances, I’ve followed the protocol and called the emergency number. My docs are beginning to believe this is my reaction. No nausea, no diarrhea, just constipation and fever. I lost my taste almost immediately after my 2nd treatment, so I’ll need to focus on getting more water in me for treatment #3.
I’m also cold-capping with Penguin. I have / had really thick hair, so I still have lots, but would estimate I’ve lost probably 40%. Starting with the 2nd treatment, I’m also trying to ice my hands and feet. That is so much harder for me. I just cannot make it thru the pre-during-and-post treatment continuously. Yet another goal for treatment #3.
It’s a glorious day today - cool, sunny, gorgeous leaves, and I’m grateful to be able to enjoy it. Stay well friends!
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Got thru the worst symptoms from my first Taxotere/Cytoxan chemo. Bad headache before, during and after 1st tx. Got Tylenol, later Ativan IV. Hurt to open my eyes it was so bad, but i made it thru a very busy 1st. Probably stress made it worse. No allergic reaction. So sorry you did agog, but they sure did take care of you and that sure must inspire confidence in your team for you. Bummer that you need to go longer; so sorry girl. I've heard from a nurse she got that allergic reaction the second time, so crossing my fingers for my next on Nov. 12th.
My worst SEs were days 5-9, but still having some taste changes (not quite as much) and mouth/lips sensations/numbing. Mild nausea a few times, but I immediately pop a Compazine and that takes it away. My appetite is good - too good I worry! - almost wishing for nausea and constipation is continuous. I'm taking 2 sennakot every evening. I stopped the 2 colace twice daily after I had watery diarrhea x 2 days. I was worried I'd need to go in and get IV fluids and popped my Immodium and that stopped thank goodness. No hands or feet neuropathy problems. Had a lot of fatigue and slept a LOT the first week and that helped too. I'm not working as a nurse in my hospital, so have that luxury. Was getting 60% pay on short term disability, but my FMLA and STD run out by 11/11, so Christmas will be a bit less. Hope to return to work late January after my last chemo day after Christmas. At least they spared me the original date - Christmas Eve. That woulda , so small mercies are appreciated. We'll see how I feel and how quickly I can recover afterwards.
Skin has been very dry and moisturizing like crazy! My lips also get so chapped but can't feel them well so Burt's Bees Pomegranate lip balm, Lip repair balms and a moisturizer lip balm from the hospital really help. The worst thing is skin breakouts! On my scalp at the crown of my head, on my neck and face. I'm 59 and having acne break-outs! Talk about adding insult to injury?!?!! Really a downer and makes me not want to go out and see people.
One more tip for preventing CIPN (Chemotherapy Induced Peripheral Neuropathy)! My family doc wanted to see me to recheck my thyroid since I'm on thyroid pill a few years. I tried to get out of it cuz breast cancer treatment seems like enough, but I'm glad I went cuz he says thyroid is really affected by these things PLUS he asked what chemo I'm having and started me on a prescription "medical food" called Metanx, which he says may prevent CIPN altogether! It's something prescribed for diabetic peripheral neuropathy and is neuro protective and restorative and contains active folate, B6 and B12 much more potent and more easily utilized by our bodies than a B Complex vitamin. My MO team and pharmacist cleared me to take it. My family doc told me he doesn't know why they wouldn't be prescribing this for everyone on chemo to prevent CIPN. Medical docs seem to undervalue vitamins, etc. but this is prescription. It costs a bit-around $150 for a 90 day supply, but I'm trying it. Will let you know how it works....
Carry on sisters! We're gonna make it thru November and hopefully be thankful to be alive!!!
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Happy November Y'all, Made it through Oct. now ready to get this party started and done with. Still have 14 more infusions to go 2 more of the AC and then 12 of the Taxol. Still doing OK no real harsh SE just seem to get tired all of a sudden. I go take a nap and boom 2 hr later feel fine. The weather has finally turned in south Louisiana so has been a bit chilly, in the hi 30's in the morning and then warming up to the 60's in the day. Just 6 days ago it was in the 90's. Our motto here is if you don't like the weather just wait a few hours it will change. We have spent more Thanksgivings in shorts and t-shirts than long pants. Not sure if that will happen this year. And no the trees don't really change here they go from green to bare in a week, and most just stay green. Good news is that while we don't have fall colors we make up for it in fresh seafood. My brothers are going fishing next week, they have been killing the trout and red fish in the area so nothing like fresh fish to make a day. Might even join them, yes I will bundle up no need to catch a cold or worse.
Kaaadams, I too have been on FMLA and short term disability. My FMLA ran out last week but all my HR person needed was a form filled out by my MO as to why I needed to stay on short term disability, they soon might have to switch me to long term disability not sure how all that works. I still have over 200 hr of PTO. So I should be good till Feb. My MO said he doesn't want me back at the hospital till my counts are close to normal. You and I both know what we get exposed to, and having a weakened immune system could put us in the hospital.
I will ask my MO about the Metanx, I don't have any problems yet but in my eye a ounce of prevention is worth a pound of cure. He didnt even know about Latisse . So will talk to him about it.
This was just a quick check in hope and pray everyone is doing good.
Keep the faith and stay strong, we got this...
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Hi RadQueen,
Good to know you are doing well! Please keep posting here, and I will join November club.
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Good Monday morning,
Being I had a week off from chemo this past week, I couldn't believe the energy that returned. I started to taste things again also. Went to YOGA, helped with the bone leg pain I've been having, also spent most of day raking the many leaves that fell. Of course with this new found energy I overdid it, paid for it on Sunday. Start 4 doses of AC with trial drug/placebo on Friday, along with neulasta. Not looking forward to that, but I just want this overwith. Blood counts still low, can't wait to see what they have done having a week off. See oncologist Tuesday. They are predicating snow of Thursday. I'm the snow queen and can't wait. When you grew up in Vermont you learn to love it, and now living in RI it is a rarity to see it.
My finger nails look weird. They have big white lines across them. I'm sure SE from Taxol and Carboplatin. Will put nail polish on them today. Off to YOGA class soon, gotta do it while I can.
Have a great Monday everyone
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Are we part of the November Chemo Club now? Should I be posting there? I did look back at earlier months of Chemo Clubs after joining this one (my first TC was 10/22) to check in on how it was for us midway or after chemo.
RadQueen - You are a Queen! Thank you for leading switch your beautiful scepter of encouragement and information! It makes such a difference in my life to know all you are here sharing your thoughts and cares as we pass thru this-the hardest time in life. I find myself frequently saying, " Let me check in with my breast cancer sisters" and this is a great source of comfort during this storm. Thanks for the info on how the FMLA/STD is going for you. My leave manager says she recommended me for my STD to continue, but that it's up to my employer. I'm used to be full-time, but switched to part-time prior to my breast cancer diagnosis, so that may make it a bit less likely that I'll continue to get 60% pay thru STD. Leave manager also said my employer can initiate an ADA (American Disabilities Act) LOA until I can return to work. I'm calling today so hopefully it'll work out.
A bit more SEs- overall I feel really good, but have developed an annoying left eyelid tick that must be a SE-I read someone else got one of these on here? I also had a weird right hand numbing yesterday. Felt like my hand had "gone to sleep" like when you lay on it, but I'd been up and about a couple hours. It slowly went away over the day and the pinky side of my hand was last to go. I got these electric "zaps" in my right foot yesterday too. My taste is still altered but slightly better. Everything has a nasty kinda plastic taste to it but water doesn't bother me. I've slowed down on the water and probably get 1.5-2 L/day now. Hair still hanging in for now and the face/neck pimples and scalp sores are healing after gobs of antibiotic ointment and bandaids overnight.....to the point where I'm not so self-conscious and I can venture outside. Took a great walk out in a local park with DH and doggie yesterday. It was a lovely fall day with the last of the colorful leaves and bright blue skies in the Buckeye state!
Fair winds and blue skies to you all, my breast cancer sisters! We're doing all we can to beat this thing and live our lives. Never feel bad to give yourself a break and just give up sometimes - I think we all need a pity party for ourselves and simply some peace and quiet at times. You deserve it! Be easy on yourselves! I'll let you know how my second TC goes on Nov. 11th in this October Club or November.....I need guidance....
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Good morning everyone!! I too like to read all these updates- good and bad. This morning my hair started falling out unbelievably fast after the shower. It is day 18 from first chemo. I have my second one this Thursday. I rebounded day 10 and I had so much energy it was like I never had chemo at all. It will be that and the pain meds to help me this second time around. I still have some taste issues. Only bottled water tasted good so I bought a filter. I live in northwestern Minnesota so my tap water was always good to me before this. And I am also have a left eye twitch at random times too.
Keep up the posts!!
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My first round of CMF was last Friday - and I had no issues this time, like I did with the TC, which was great. I had the same nurse, so I felt comfortable with everything. Since then, I have felt really tired, had some nausea & constipation, and super dry skin. Tonight, I feel like I finally have a little more energy, which has me really happy.
Only 7 more to go!
Best wishes to all -- we've got this.
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Good morning all, I’m beyond words today. My coworkers are such a great support group. See attached pics the caption reads “ Marta, your call has not gone unheard, your cancer ninjas are here, we love you!” I’m truly blessed0
