I’m Beth and I am 4 years and 4 lines into this journey with the tough stuff still ahead. I am writing today to share a bit as some here have been kind enough to ask how things are going for me knowing I was having a therapy change. What a memorable month it’s been since having a small progression in my spine which has led me to have to return to the dreaded red devil IV chemo after a 20 year break since early BC.
Luckily my daughter and I had a long planned trip to Washington DC just days before that first trip for chemo. We enjoyed using those city bike rentals all around those gorgeous monuments and had brunch with dear friends but my favorite thing was that lovely hotel room.. so full of fun that I didn’t have time to fret about going back onto IV chemo the day after arriving back home.
When the day finally arrived, it was a real treat to be driven into Boston by my best friend Cindy. Funnily enough, we by accident dressed exactly alike… as our both our style typically runs toward zookeeper crossed with a yogi instructor. Sneakers, yoga pants even both of us choosing to wear thin down vests….. the nurses would be forgiven for repeatedly referring to us as “a nice couple”. When they hooked me up and let the premeds drip, ivfound it was so intense. By that I mean that The Benadryl hit me like a rocket going up with G forces-the drug felt like it caused my head to push back onto that vinyl recliner and I couldn’t lift my arms while my jaw slacked not very attractively. . “Not to worry” I was told…” the dexamethamethazone (speed) will perk you up”. Oh ya… I remember that stuff from 20 years ago…
Not very fun-this time it also kept me awake for the next 36 hrs. Note to self- please remember to tell them that I am very sensitive to that stuff.. “ya da ya da ya da”… I sure don’t need to go into the gory details as you all prob can imagine… but the N&V was worse than I remembered. I think it was perhaps because Doxil had been so built up as the kinder gentler version of Doxirubicin but not for me… after the N&V cleared, then the mouth sores started plus the HFS has not abated from my previous 18 months on xeloda…. But No worries as kept repeating “this too shall pass…” and soon it was Father’s Day and I was well enough to have a fantastic week e-biking around Acadia National Park before they hit me again on June25th,
This 2nd cycle I had an easier time of it with written instructions for rescue meds ready to take.
I was happy that this cycle had very little nausea! This allowed me to completely enjoy helping my sisters host my mothers 90th bday in my sisters 200 year old barn. My mumwas delighted with her small luncheon-both of her best friends from 3rd and 7th grade came!.. this of course was a huge effort for them as they are also 90years old. Good bless them for making the effort!
Speaking of making an effort for best friends.. on July 1st it was my turn to make a huge effort in order to be with my Best friends… I was so happy to be well enough to fly to Chicago to hang out with
My very best friend from kindergarten David who now lives in Stockholm…. I asked another BFF Claire (who was the maid of honor from my wedding)…if she would come with me to help achieve this bucket list treat. We had an absolute blast! Yes It is getting harder to travel for sure.. but I can be sore at home and then miss out…or I can keep moving. This is Just my perspective right now but I hope it is helpful for some. And if travel has Become too much for you, I hope that you are giving yourself the grace that I know you would wish for others! Happy 4th of July!
I’m going to post some pic below.. if you care to see.
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Bettybuckets
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my kindergarten pal David and his partner came from Sweden to Chicago so I had to make the effort to go see him.. I usually look… well sick with MBC but David did his magic with hair and make up and I think I look great!
Sounds like a bit of a rough go but I sure like your attitude and how you push through. Sorry you have to go through this bur as we know the journey is tough. Take care and looking forward to seeing your pictures 💕
”…I can be sore at home and then miss out… or I can keep moving…”.
I love your attitude. I feel the same. I won’t let cancer rob me of living aa active, rich, vibrant life. I am going to keep moving in any manner I can, as long as I can - there is so much yet to see and do, ever with my crutches and wheelchair
I pray you can keep moving for many years to come 🙏💗
Glad you had the energy. Yeah the iv chemo is hard. Your are right though, we need to push ourselves, just to get out of bed. Having the resources to even have a bucket list helps a great deal with motivation. Have you been on this journey for 4 years or 20? Surely many of us hope to have a 20 year run too or more. You are very fortunate. My dr. told me to sell the scooter and stay off bikes. Blessings
Did your doc tell you that because of specific bone mets? I'm sorry you got that advise. Reminds me of a couple of years ago when an onc. orthopedic surgeon suggesting I should avoid running I was never much of a runner per se but always loved to include short jogs in my walks. I feel like I've lost a lot of strength since I stopped doing things like that, though it's hard to know if it's been the cancer or the limiting physical challenge which has added to my declining strength! Very frustrating. And I haven't been on my bike for a while because last year I was having a lot of muscular issues around my legs/pelvis whenever I challenged myself physically. But I'm doing better this year so have been wondering about taking a ride on it! As long as I avoid the hills lol.
Great question. Walking is great and doing other types of exercise to strengthen your muscles. I was just declining in health since 2022. I lost a lot of muscle. Since I have been on HT over the last 5 months, I am gaining better strength. It takes a long time to heal from all the different chemo treatments. If you fall, you risk breaking a bone/fracture and it is painful, takes longer to heal and other things can develop because of it. Needing surgery, infections, more meds and therapy. It is just too risky. Falling and not breaking anything but being in pain is lucky, still hurts. Just like not wearing a mask and getting covid. People say it is just a bad cold, well I do not want a bad cold. I try to be extra careful with all my choices on a daily basis. I still wear a mask in supermarkets, etc.
I caught a bad cold from my husband back in early May and it was terrible! I had mostly stopped wearing masks around but now Covid is increasing again in our area so (apparently by quite a lot) so I’ve started to take more precautions again. A drag, but it does beat being sick.
And yes healing from an injury can set you way back, it’s true. I broke a bone in my foot early last year that took months to heal, that was a major, major set back for me physically. Trying to build it up again
do try an e-bike… it is so helpful for the hills.. I am happiest on my bike… it has a lot of shock absorbing gizmos which really helps. Yes it has been hard to know if it is the cancer or the treatments that are mostly leading to the decline in vitality… still at 64 I am frustrated with what I have the energy to do in a day… but still it is more than most of my perfectly well friends. It helps to keep that in perspective
Oh I am so sorry to hear the xeloda stopped working for you. (I'm a bit nervous to get my next bloodwork. The first few months of xeloda my tm's kept dropping insanely, and then suddenly last month they plateaued, so I'm worried about it all reversing. We shall soon see! ) Ugh, to Doxil, and yet, you power through! You truly are a motivating inspiration ❤️ I think you and are the same with response to the other meds! That's great that it was much better the 2nd time around. Is the plan to stay on this now? Or is it just for a certain period of time?
After my shitty start to this year, and then getting thru tax time, I talked to my husband and son and said, we should go away somewhere special while I'm doing well! And so we did! Quickly booked a week in Costa Rica, I managed to do lots of hiking (skipped a bit of my Xeloda to pull it off, hfs be damned!) and we had a fabulous time. I was so happy we went. The ironic part was I got hit by extreme fatigue when we returned and it took me about 10 days to feel myself again. oh well, still glad I went! As you say, we have to make the most of it. Thanks for updating us
Et oui, il nous faut bien du courage et essayer de ce dire que ces poisons sont là pour attaquer un ennemi de taille, moi je suis sous afinitor et exemestane, exemestane me bloque carrément les genoux, je n'arrive pas à marcher depuis 2 mois et dans mon petit coin de France, les kinés, médecins, acupuncteurs ne veulent plus se déplacer donc on se débrouille comme on peut face à nos effets secondaires, heureusement pour le moment le traitement a au moins le mérite de donner des résultats. Courage à toutes
bonjour mon cher ami français, je suis vraiment désolé que l'exemestsne te cause des douleurs au genou. c'est terrible. Je l'avais l'habitude de le vendre pour pdizer onvology à des oncologues. effet secondaire terrible pour certains.. essayez d'obtenir du Celebrex.
J'ai un ami qui vit en France rurale à une heure de Limoges. J'ai adoré visiter son village, alors ils ont fait venir un camion de bresd et plus tard un camion d'épicerie. J'imagine qu'il n'y aurait pas de physio ou de docteur là-bas. mais c'est vraiment un paradis ! comment est l'affineur ? est-ce IV et plutôt bien toléré ?
Hiya Beth - loving to hear about your active lifestyle. May your resilience, strength, adventurousness continue to inspire us for years to come. Nb might you share the name of your insurance company that makes all those flights possible. Here in dreary old blighty we're having a summer that's forgotten how to be summer with weather that's rainy, windy and so cold i need my gloves and jumpers. But we do have something major to celebrate - getting rid of a corrupt Tory party - politicians who lied, cheated, misled, and abused their powers to raid our national bank to make them and their cronies even richer.
Hi Bikebabe- good to see you here! Is it like a labor party that has taken over from the Tory’s… and that woman PM didn’t even retain her seat. That must have been a big upset. Let’s hope things improve economically for our friends in the UK.
Re: my travel insurance….. I have good insurance in USA and then I just pay out of pocket to see my private oncogist in NZ while I am there… I am lucky to be a dual citizen and they have socialized med so for accidents etc and my GP visits I rely on the very good NZ health care system. When I visit my son in Switzerland I do buy insurance… just the usual.
Your attitude is very inspiring 💕. Love the travelling you do. We don’t travel much any more but I am ok with that. Might try a little road trip but I am fighting a sore hip and right leg. Will see what my scans say in a couple of weeks. Take care💕
I am so sorry you had to move to IV chemo, but hope it will work for you and that the side effects will get better. You are an inspiration to me and others on this site. You have such a wonderful attitude and adventurous spirit. Glad you were able to see some friends and celebrate your mom's birthday. Love the pic of her with her friend and also the ones of you and your daughter in DC (one of my favorite places to visit) as well as you friend David. You look beautiful in that picture. Keep up your fighting spirit Beth, never give up, keep planning travels when you are able. Sending you hugs and prayers.
Thank you so much for chiming in… it’s not easy as you know…. But I pray that I can stay well enough for NZ again on Jan 30-March 17th… might have to have chemo over there… if I had to I could do that.
just starting to get tired now that I am 2 months into the doxil… I did like xeloda having no effect on my energy but 18 months of it was tough on my HFS feet!
It’s hand and foot syndrome. It’s brought on by folate and folic acid. A friend had a really fast and aggressive reaction to xeloda stages taking it for colon cancer not breast cancer. It’s really painful but lots of cream like moo goo or similar on hands and feet every night also helps.
Folate is linked to HFS and keeping folate and folic acid as low as possible definitely helps according to a long term user (on another site). Folate is listed by the drug manufacturer as something to be avoided while on Xeloda. In Australia folic acid is added to common foods like bread because it’s important for potential mothers before falling pregnant as low folate levels leads to spina bifida.
I think it might be hard to reduce entirely but keeping it very low is sufficient for some people.
thank you so much.. I too have a husband that I owe so much as he does so much for me. I had just one full day in wheelchair while traveling thru 3 airports and it was so tough with all the bouncing and absorbing cracks. I didn’t know… walking is a blessing! I can’t do so much with HFS as I used to but still I now value it so much.
You’ve certainly had the bad with the good. Thanks to your family friends and adventure spirit, it’s been mostly good. You are very inspiring! Please keep letting us know how you are doing!
Hi Beth! I am so sorry that you needed to return to the Red Devil, but the rest of your post reminds us all to keep on living!!
I was/am going to reach out to you privately about a call I had a couple of days ago with Alicia (monkeygirl) where you came up in conversation! Alicia is the newest member of the MoreFor4 Board of Directors.
I have to run out for about an hour or so, but I will send you a private email when I get home. In the public forum, though, I will just say... your zest for life is contagious. And you have always been someone I clicked with here!
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Blessings
I was never much of a runner per se but always loved to include short jogs in my walks. I feel like I've lost a lot of strength since I stopped doing things like that, though it's hard to know if it's been the cancer or the limiting physical challenge which has added to my declining strength! Very frustrating. And I haven't been on my bike for a while because last year I was having a lot of muscular issues around my legs/pelvis whenever I challenged myself physically. But I'm doing better this year so have been wondering about taking a ride on it! As long as I avoid the hills lol. 
Laughter is the best medicine - let the fun Be-gin
Dear Santa 🎅🏼! What I Want For Christmas smile😍
Dreading Scan.....
small brain mets in right inferior cerebellum
Never had radiation, finally agreed to it. Terrified!
