Abraxane
Comments
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Robin, the antioxidant issue is a question mark in my mind that I have not satisfactorily resolved for myself yet. Like you, I've read conflicting things on taking antioxidants like ALA with active cancer, with some speculating that it protects cancer cells as well as healthy cells, others saying no, still others recommending high dose ALA therapy. I have it mentally earmarked for further research so I hope you will share whatever you find. I do find it noteworthy that your MO recommended it. Is this a trend, or common, I wonder?
After my bilateral mast and recon in 2007-8, I was wiped out and still felt sluggish four months later. My plastic surgeon told me to do three things: eat blueberries daily, eat “every dark green leafy thing in sight”, and take ALA. I felt much better within days! So that made me a big believer. But I was not a patient with active cancer at that point (as far as we knew, and the plastic surgeon, though brilliant, is not an oncologist...
SInce I know for sure that I feel better when I take ALA, I would really like to know if it’s okay!
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ediclisa- My fast is basically water only. I have 3 cups of fat free bone broth every day to get essential salts and minerals and bit of protein. It's less than 100 calories. Doctor Longo has found that he can't get compliance with a full on water fast like I did. He developed a Fast Mimicking Diet that is not easy but easier than a fast. Works just as well. He describes it in a book he just published called The Longevity Diet. There is a chapter on diet and cancer treatments. The title of the book is a weird effort to sell the book. It's really about his whole research program and its applications.
Are you BRCA positive. Olaparib is getting some awesome results. I think combining it with abraxane is brilliant. Expecting to hear great results. Keep checking in.
I'll get there on accepting hair loss. Almost there.
Lulubee - Congratulations and great work on dropping the dex.
I looked into the anti-oxidant and chemo thing a while ago. I _believe_ one issue is timing. Some (most?) chemos are active in your system for at most 2 days and they are mostly out of your system in one day. That is the case with taxols. The take home for me was to stop all supplement during chemo... but to me that means the day of and the day after. After that there is no chemo in your system so what activity would the anti-oxidant interfere with? If there is something, I'd love to understand it. Not feeling super solid on this one, but that is my question for people who say no to anti-oxidants.
>Z<
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Z, that is what I thought also, when I was trying to figure out if I could continue to take my beloved Inflamma-less supplement while on Taxol. It contains resveratrol, and I had found a study that showed resveratrol can negate Taxol. So I consulted with the pharmacy squad at Texas Oncology. I tried to argue the two-day break idea and they came down with a hard NO. They said there is a thing called “steady state” where the chemo reaches a point where it’s in your system all the time, and they said “for you, this is what we want.”
So there’s that.
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Z - thanks for your confidence with the combination of Abraxane/Olaparib is brilliant - I was worried about my MD just "throwing" it in there. I am hoping (from a blog) that the nausea only lasts 2 months - Zofran/Compazine are not cutting it. I only have a couple of more weeks to go and the nausea feels like it is getting better. I'm a paramedic and its hard when you are sharing the "bucket" with your patient. I am BRCA1 positive - my mother died of BC very young and 25/37 of our relatives have the gene. The 70's were not a good time for breast cancer patients - even at Mayo where she went. I have survived 12 years and plan on sticking around for a long time. My MD did send my final liver tumor sample out last month and found no mutations. Abraxane has been the kindest to me out of all the chemos - just the 3rd and 4th day of bone aches and then nothing until my next treatment. I will find out my dosage on Friday, I can't remember. My TM's are holding steady - I was a little concerned that I didn't see a drop, but my MD said it's to soon with the combo. I am to lazy to do the cold caps so I give everybody who does them a lot of credit. Once my hair fell out - I felt empowered. Not sure why - but did. Gave my wigs I had made to a young girl I transported on the ambulance and couldn't afford them. I never wore them. Get some rest and thank you for all your wisdom. I'm going to do some more reading on Dr. Longo, it's very interesting and I hope it will work for you. I will see about doing it after I am finished with the nausea and my next treatment. Thank you all for being so strong. More snow on Sunday - where or where is the sun and warmth! Lisa
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I've been on Abraxane for about 7 months (3 weeks on, 1 week off) and am feeling really well. The dose (175mg) is for delivery over 30 minutes and I take no premeds, but the whole process takes 3 hours every time
. Nurses say they have to wait two hours for the Abraxane to be prepared/unfrozen? Does anyone else have this problem or a solution? 0 -
Lulubee & Zarovka, I've wondered the same thing about anti-oxidant/anti-inflammatory supplements. I've been told by an MO that they aren't sure how long chemo works for, and I've wondered if even when the chemo is out of your system, if a few of the cancer cells that are damaged, but not dead, if the anti-oxidant supplements wouldn't help them recover?
Scoobie, my Abraxane can take that long for them to get it ready, it's been inconsistent. And I am given a zofran for premed. I've been on it since Dec. and feel the worst 2 mornings later, but not that bad.
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Scoobie - at my infusion center, I get bloodwork (10 minutes) then wait 30 minutes for results. The doctor comes right about then, reviews the bloodwork and approves me for treatment (20 minutes). they will not order the Abraxane until the doctor has reviewed my bloodwork. Then it is about 30 minutes for them to get the drug from the pharmacy. 10 minutes to get the IV started, 30 minute IV, 15 minutes to get unhooked and out of there.
Its about 2.5 hours but not because they are prepping abraxane.
Lulubee - Interesting that the stuff accumulates. Will look at that.
Mediclisa - I appreciate your comments and confidence about being bald. You've painted a picture of where I need to get to.
Please keep posting about your treatment options and decisions. Helps everyone.
KPW3 - when you say you feel the worst 2 morning later, what are your symptoms?
>Z<
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Zarovka-fatigue mainly, I feel like I'm a slug. I need extra sleep. When I exercise it takes me a bit to get going but once I'm moving I feel much better. I've had bloody noses, my sinuses have gottenvery dry, I've been using saline rinses and 'Ayr'-a saline gel with aloe in it, I put it in my nose with a q-tip. Neuropathy has started in my fingertips (just numbness,no pain) in my pointer fingers and now thumbs....MO is keeping a close eye on it but basically says nothing helps....just saw a medscape article last week and gave it to him about gloves:
https://www.medscape.com/viewarticle/894060
My DH ordered them and I used them for the first time Monday...they didn't feel too bad, we'll see if they help. Since the Abraxane seems to be working I want to take it as long as i can. He has lowered the dose twice due to low ANC and I've missed three doses total, I started on the high side.
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Hi, everyone. I surprisingly started abraxane yesterday. My insurance wouldn’t approve halaven without having tried abraxane, so here we go! I haven’t had a chance to look back and read the thread (I’m about to start that), but would love some pointers on what to expect with this chemo. Real stuff from real people :
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Good Morning Swess.....I started Abraxane in January and it has been the kindest to me in side effects as I am still able to work full time. I am on the 3 week dosing and get it on Fridays. Monday/Tuesday is when I get the side effects of bone ache and nausea/vomiting, tapers off and then I am good. I do have the fatigue and try to power through it with rest. I still have neuropathy from Taxol/Avastin combo and not getting any better or worse. I was on Gabapentin and have since weaned myself off as I felt it wasn't helping. I had 1.5 inches of hair growing in and promptly lost that week 2 of the Abraxane. I went and had my head shaved at the salon as I was tired of losing hair and then it was gone. I wear ball caps. There are ladies here who do the cold caps and have had great success. I have my treatment on Friday and will find out my dosage. Good Luck....Lisa
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Yesterday was Day 1. I took Ativan beforehand, because I knew they were going to attempt to access my port, which hasn’t been accessed in 9 years! Luckily she got it right away, and amazingly it worked! Anyway, I pretty much spent the rest of the day sleeping.
Day 2, today, I feel good. Better than I have in a while. I’ve even had enough energy to do a little housework. I wish every day would be like this.
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First infusion, Monday. I've got abdominal cramps and a bloated stomach. I don't know if that is cancer, gastric issues or abraxane.
I briefly had dry mouth yesterday (the day after). Some Biotin mouth wash I got with Ibrance took care of it.
But it sounds like side effects may still be coming ...
>Z<
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I had my first dose of Abraxane yesterday also, and so far so good. Staying ahead of nausea and pain with the prescribed meds. My wigs will be delivered tomorrow as my head will be shaved next week following my second treatment. I'm praying that we will all have terrific results from this med and hold out hope that our reactions are so great we can move to an oral med and stay there for a very long time.
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lulubee, That's what I keep finding on the internet is anti-antioxidants can protect the cancer cells. I am opting out of taking the ALA until there is more data. One thing I find interesting is my tumor markers have dropped on my weeks off. I get my markers tested on a weekly basis by my own persistence. So if my marker had dropped 2 weeks after a chemo treatment, that tells me the chemo must still be working. And it was a drop of 30!!! What that oncologist from Texas told you makes sense to me since I have drops on my off week.
Mediclisa, I you are having nausea and vomiting, then request anti nausea meds for your premeds. I am so easy to get nausea so I had to have my insurance approve (name escapes me now) the anti nausea that lasts for 3 days. And I have had zero nausea, which is such a blessing.
Scoobie, By the time I get to the infusion room it takes an hour to get my drugs. Sounds like someone is dragging their feet. You oncologist maybe busy and unable to approve your blood work.
Welcome all new comers to this tread! This is a great treatment and I hope it works well for all of you for a long time. Here is some info to give you all some hope. In just 2 1/2 months my tumor markers have gone from 625 to 116. I am doing a dose of 160mg over 30 minutes 3 weeks on 1 off. If my counts are low on infusion day, I ask for a shot of nuepogen and ask to retest the next day. The next day blood work is up due to the shot and then I am able to do my treatment. This is my strategy for not missing any treatments. My biggest side effect is low red blood cells and that causes serious fatigue and breathlessness. You red cells have to be at certain levels until they will give you a blood transfusion. And once you get a transfusion, you feel like you could run a marathon!!
May God watch over all of us.
Robin
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Robin - Thanks for the summary of your treatment plan. You are doing great!!
My stomach is swelling a lot and it's gotten worse since abraxane IV on Monday. Ascites are one possibility. They did not mention significant ascites in a recent ultrasound but they were not looking for that. I get an MRI on Friday so that should give me a verdict on ascites.
I have a lot of gastric distress which makes me think something like irritable bowel syndrome is a possibility. I am on a high fiber diet which can exacerbate bloating as well.
Have you had any abdominal cramps or bloating that you think comes from Abraxane?
Z
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Z, Yes I have and it's due to severe constipation. I have not gone in 2 weeks and plan to do one of those kits you mix up and drink that my gastro dr. gave me. I'm in serious pain, bloated, and have lots of gas. Ive tried laxatives, colace, miralax, fiber pills and more and nothing works. I have always battled constipation as an adult, but on abraxane it has been really really bad. I'm thinking of asking my oncologist to prescribe linzess. She may tell me to go to my PC, but would save me time if she would do it. Constipation is a side effect of Abraxane, so I don't see why she wouldn't. I would rather have the big D!!! lol
My appetite is not good at all and is changing. I can't hardly even think about eating meat of any kind except for those little tiny grilled chicken tenders from Cracker Barrel and put them on my salad. I don't like to eat when Ive gone this long, so I drink Instant Breakfast for dinner. I pray you find away to manage this, and if you find any tricks, please pass them on. Or else I am going to have to do a dreaded colonoscopy!!! ugh!
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rpoole - I had severe diarrhea for weeks and suddenly I am constipated with rapid bloating. This is after one abraxane IV on Monday. What you are saying makes sense.
We'll figure this out just like we've figured everything else out. But at the moment I have no clue what to do. You are way ahead of me. I am not pooping. I am moving around like the good ship lollipop. Fiber supplements are supposed to help with constipation but a bit of googling suggests they can make bloating worse. Definitely not big meals in my immediate future.
>Z<
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Once upon a time many years ago, a desperate woman started a poop thread here on BCO. It quickly became one of the busiest threads in the history of ever. There was a lot a good info on that thread. I should find it and bump it.
In the meantime, let's have some real talk. Pooping is part of your job as a chemo patient. You have simply got to keep that stuff moving out of your system.
Gals, you need to keep a poop kit on hand. (Call it a Sh__ Kit if that makes you laugh.) After much trial and error, my kit includes glycerin suppositories, Natural Calm magnesium powder, Align probiotics, dried prunes and dried apricots, a box of Fleet oil enemas, unscented baby wipes, and little boxes of coconut water (rehydrates faster than plain water). And you may soon wish you had some maxi-pads on hand-- preferably without chemicals and bleach (I like Seventh Generation Free & Clear) because you may find that all these hateful meds have made Miss Lily a little sensitive.
About oral laxatives: my kit does NOT include Miralax. Google the warnings on that stuff. It's basically poison. Pediatricians are beginning to back away from that stuff in a hurry because of all the damage it has done to children, including some children I know. If you need to take something orally, Colace is an oral stool softener which does not cause cramping, which is why it's the only laxative my breast surgeon recommends for patients to take to prepare for surgery. Dulcolax and Senokot are not stool softeners but rather stimulants that work by causing rhythmic contractions of the rectal muscles. They are sometimes not as helpful with the dry, hard stool problems we cancer patients can get from dehydration.
One time I was afraid I had an impaction. I was in agony, sobbing on the toilet, terrified. I texted a nurse friend who works in ER. She instructed me to use a Fleet oil enema right away. She said a water enema would not work for this, because it would take oil to soften the blockage and break it up. At that point, I had tried everything else in my poop kit PLUS a couple of Fleet water enemas to no avail. I had been in terrible pain for hours and I was exhausted and desperate. To my surprise, the oil enema solved the problem within an hour. And the angels sang. Now I keep a couple of oil enemas under the bathroom sink at all times.
For lesser woes, glycerin suppositories can usually get things going in less than ten minutes. They can also relieve gas quickly. Insert one, stand up and pinch your cheekies and hold it in until you cannot hold it any longer (10-20 minutes typically) and stay close to the loo in the meantime. You may think you could NEVER do such a thing and then one day you will try it and then you will forever hail glycerin suppositories as tiny torpedoes of wonder.
On the other end of things, a spoonful of Natural Calm magnesium powder mixed in warm water, tossed back right before bed, is pretty much a magic potion. You'll sleep deep and sweet, and wake up regular. We are ALL low on magnesium, they say.
The prunes and apricots are my mother's trick, and this totally works. Put two prunes and two dried apricot halves in a juice glass and fill it ½ inch from the rim with water. Cover the glass and leave on the counter overnight. In the morning, eat the fruit and drink the liquid. You may be pleasantly surprised to fine you even like the taste!
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Okay, y'all, I bumped the thread I mentioned: "CONSTIPATION--problem with so many of our meds."
That thread is six years old and still going apparently (forgive the pun).
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Oh my goodness. I feel like I slept on a concrete slab. I’m so achey. From the back of my head to my lower back. Guess this is the price I pay for having a fabulous day yesterday
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Thank you Lulubee!!!! I'm going to start building myself a S__t Kit. I'm starting with your tricks.
I'm going to find that thread and add it to my favorites.
Fine today except for really really bad bloating. My whole abdomen sticks out maybe 2" from where it would normally be but it feels like 6.
>Z<
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Z, could the bloating be from re-introduction of foods? That's what you look for when doing an elimination diet to determine food sensitivities-- you fast, then introduce foods one at a time to see if they cause bloating, gas, allergic symptoms, etc. Just a thought.
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Z -
While on Taxol, I became lactose intolerant. It seemed like a switch flipped overnight. I had no idea, and kept trying to cure my ills with good plain yogurt.
I have never felt sicker. One of the ladies on this list mentioned that taxanes had caused her lactose-intolerance, so I stopped all dairy. Worked like a charm. The alternating diarrhea/constipation cleared up, and I was no longer carrying an 8 month gas baby to term.
In the long run, I believe that all estrogen positive people should avoid dairy, as there are bunches of conjugated bovine estrogen in milk. The cows are in a heightened hormonal state to lactate, and in the US, they are milked almost to the point of giving birth again. I tell myself that the estrogens bind to fat, so when I'm desperate for a dairy treat, I do a non-fat one (skinny cow!), with plenty of lactaid on board.
I feel like such a dummy. Right before I was diagnosed Stage 4, I had spent a year on a low carb diet. I ate so much cheese, and drank so much whole fat milk. Mind you, it was organic, but organic estrogen is still a bad idea. I did loose weight, but I wonder whether that was due to the cancer, or if low carb really worked for me.
When you palpate your intestines, do you feel fluid? I don't know about humans, but an animal with ascites feels sloshy, like they have a water balloon under their omentum. If it is gas, you can feel it trying to round the bends in the large bowel, as it goes from the transverse to the descending bowel. For me, when the gas transits the curves in the bowel, that is when it is the most uncomfortable.
Anyway - just putting it out there. Hope you are feeling better!!
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Cat scan tomorrow to see if the abraxane is working. I am a nervous Nelly. Of course my onc is in Florida and will be back Monday, but he is in a different office.
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lisajo6 - sending good vibes and support for your CT scans. nervous is normal.
lulubee - my new diet strategy is complex carbs (vegetables and whole grains) and good fat with a small amount of protein. maybe 8 ounces per week of fish. not my normal diet. this new diet is definitely one obvious explanation. it's not the diet you follow, for example, to treat gastric distress since the complex carbs tend to cause gas and other gastric problems if you are not, otherwise, digesting properly. good point.
blaine - I've been struggling with gastric issues for weeks. Milder issues but enough to make me consider that I might be lactose intolerant. I am eating a lot less dairy but still a bit ... maybe butter sneaks into something and the occasional cup of yogurt. I probably need to cut it out entirely and see if that helps. good point.
Your description of how gas vs liquid feels is exactly what I was looking for. Now I have to find the nuts to feel my abdomen and think about what I feel. Doesn't help keep me in a state of denial, which is what keeps me from panicking most of the day. A complex balance.
>Z<
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My first dose of Abraxane was two days ago. So far, so good. Trying to stay ahead of the nausea and bone/muscle pain by taking meds on a regular basis. And pacing myself so I don't fall flat on my face with fatigue.
Everyone is in my prayers that this chemo does it's job and more for all of us.
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Z, knowing you, I am completely sure you have well-researched reasons for your diet choices. I'm always interested in the various thought processes being worked out here because I learn from watching all of you brilliant people think things through. I am genuinely curious what is prompting you to severely limit protein because frankly this is the opposite of what is working for me while living on chemo for the long haul.
We need ample amino acids from high quality protein to rebuild the blood cells that chemo knocks out. Just please keep an eye on your CBC. I track my lab reports each week to see what values shift with my diet. It does appear to me that my food choices make an observable difference.
I have noticed that I do well to eat high quality beef about twice a week to support my low red cells. When I eat beef the night before labs, my red cells are generally better than when I do not. I also do better overall (including mentally) when I get my weekly salmon boost. High omega 3 foods like salmon and avocados are thought to support white cell production. Also for the WBC, once a month on my week off chemo I eat half a dozen oysters (with my MO's full blessing, believe it or not) because I rebound better, feel better, and look better when my limping white blood cells get that tidal wave of zinc at the end of a chemo cycle (oysters have many times more bio-available zinc than any other food source, and cells love zinc). I wash them down with a cold Shiner Bock, pretty much the only time I ever drink a beer. I *always* feel better afterward.
An oncology nutritionist suggested that white blood cells reportedly respond to citrus, mushrooms, garlic, ginger, carrots, and spinach. Pretty easy to check all those boxes with Asian cuisine, so I keep that option high in the meal rotation.
The most effective routine I've come upon so far: I start every morning by making a small morning cocktail for my blood and my liver. I press one large organic orange (for vitamin C which nourishes cells, and for the folate boost because chemo raises homocysteine levels (for me, anyway) which food-based folate remediates; elevated basophils can be a clue here) and one lemon (a terrific liver flush). I mix this with an ounce of a wolfberry and citrus oil formula (for immunity and blood cell support) and gulp it down like a shot, followed by a dropperful of liquid sublingual B vitamins. I've been doing this daily without fail for a month now, and my SE's are noticeably reduced. Less queasiness and taste bud changes, more energy, better sleep. So encouraging after 15 months of yuck.
I do not drink dairy milk. I do eat a little cheese a couple of times a week, and occasionally I have a little organic plain Greek yogurt. I purpose to eat a lot of blueberries, apples, garlic, and onions. I drink a cup of coconut water for rehydration after chemo and whenever I feel too thirsty. My guilty pleasure, especially when my taste buds are jacked up from chemo, is super tart limeade. I miss sweets sometimes, so I am playing with baking bundt cakes made with nutritious ingredients like honey, yogurt, eggs, olive oil, nuts, fruit, and grated vegetables. Interesting hobby this is turning out to be! Good thing my family makes these experiments disappear fast or I would be blooming out of my jeans, for sure.
Hopefully some of this will be helpful to someone!
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Does anyone feel weak on abraxane? My legs and arms feel weak and I get shaky. Had my cat scan this morning. Now the wait.
Lisa
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Lulubee -
I believe people need to follow what their instinct, mind and body tell them. This table summarizes where my instinct, body and and above all a lot of research have gotten me regarding the the right balance of macro-nutrients and what I think the research supports. My thinking is mostly aligned with Valter Longo of USC at the moment. His work integrates decades of work form 10-20 institutions, he's just a good communicator. I don't feel the support for other diets is as well researched and supported. The table is from The Longevity Diet in which Longo lays what this research community has concluded regarding diet, health and cancer in laymen's terms.
Missing from this table are the good, poly unsaturated fats like extra virgin olive oil. These are key. I am not finding my references regarding good oils quickly but basically you can have all the extra virgin olive oil you can stand. I read one study where they had 1000 people on a high fat diet where "fat" = polyunsaturated good fats (lots of olive oil) and 1000 people on a low fat diet for 5 years. Or that is what they planned. The mortality rate among the low fat cohort was so high they had to stop the study for ethical reasons. ... That is a good study. When I find that article I will post.
Specifics are important. By high carb consumption, we're talking complex carbs like whole grains and vegetables. Simple carbs >>> insulin spike >>> cancer growth. Fruit juice is an issue because it converts into simple sugar in your system and drives insulin spikes. If you are fighting cancer, even fruit needs to be limited to keep simple sugar intake and insulin levels low. I am moving increasingly towards a plant based pescatarian diet with good oils, where "plant based" = complex carbs only.
I've concluded that high protein diets are not good generally and not good, specifically, for cancer. IMO, their popularity speaks to how poorly supported by science various popular diets are, and nutritional advice is generally. Proteins, for example, drive up IGF-1 which drives cancer growth. IGF-1 (IGF = Insulin-like Growth Factor) is easily measured in serum The relationship between protein consumption and IGF-1 levels are very easy to document. A high protein diet/low carb diet is popular because it is definitely an effective strategy to lose weight, but studies show that it will still shorten your life even if you don't have cancer. We need protein, possibly a bit more when we age, but not much. The need to manage insulin levels is well documented for cancer, and the argument for a high protein diet. But sticking with complex carbs gets you there without the IGF-1 hit you get from protein.
So that's my thinking at the moment. My views have evolved on many issues as I study and learn about cancer. Much of that evolution has come from reading the posts from my BCO brain trust. I am ready to keep evolving and therefore interested in everyone's perspective on this. Such a brilliant and supportive group. Interested in all thoughts.
>Z<
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Z, that is good information. Thank you for taking the time to give me a great answer! I agree about the complex carbs comprising the biggest part of the plate at all times. They are the bulk of my food intake as well. I never eat a lot of protein at a time. The part about olive oil was really intriguing. I love the stuff. Do the mice icons mean this was from mice studies?
Here's what strikes me. It's all important. Your post and mine address two sides of the same conundrum, that being how to eat to stay alive with cancer, while on chemo, as long as possible. My protein-supporting comments are pointed specifically toward keeping the CBC numbers strong enough to continue longterm chemo with sustainable blood counts. That is one piece of the puzzle. Then you highlighted the other piece of the puzzle: antagonizing cancer through diet. Essentially, we have presented two equally pressing concerns here. At any given moment we have to address the most threatening concern. I am all about eating to antagonize cancer growth, but when my continued treatment is at risk because my blood has gone so pink and thin that I cannot walk to the end of the block without being stopped in my tracks with dyspnea and tachycardia, reality is that I won't be fighting cancer in any way, shape, or form in that condition, so I better give priority to boosting the blood so I can keep getting treatment. So maybe a weekly steak is not the top-tier option for antagonizing cancer, but if it's the thing that keeps me in the chemo chair, I calculate that I am still ahead because the chemo is doing more to fight cancer that week than the absence of a small steak would. Does that make sense?
And then there are the longest days on chemo, the times when you are hungry for days but all decent food tastes like sucking dirty pennies through a smelly, wet sock and the only thing on earth you could possibly choke down is a chocolate-glazed Krispy Kreme donut so it's donut or starve and you eat the dadgum donut and live. True story.
When we're on chemo, we just have to keep a lot of plates spinning at once.
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