Anyone starting chemo August 2016?
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Hi all of you beautiful ladies! The past 3 days have been good for me. I noticed my horse tack was needing some TLC! I had hubby bring what I can't carry in and I've done a 2 day marithon of getting it all taken care of. My poor saddle and bridles were nasty! I used my face mask which hubby thought was hilarious but there was a touch of mold on some and I wasn't taking any chances! I couldn't put off cleaning until after my chemo, I've got A LOT of my hubbies $$ wrapped up in my tack hehehee
I haven't lost any more weight this week which is good. Maybe my scales need new batteries? We'll see on Friday morning for infusion #2.
I see there are 3 of us lined up for Friday infusions, Hopefloats, Unwilling and myself. Good luck to all of us. I hope I haven't missed anyone?!
Dara, cold capping for the mouth?! I love it! I doubled up on my miralax and it worked like a charm. I feel so much lighter! Chocolate?! YAY!!
Hopefloats, how did the party go? I hope everyone had kind things to say and do for you. I hear you about the appointments! I have 7 this week, 3 on Thursday alone. They start at 9am and I'm done at 3pm. It'll be an 8 hour day for me as travel time is an hour one way. Yay me! So, my heart and soul are with you this week!
Fireheart, I made it to church also on Sunday. It was more work than I'd planned for as Mom is almost an invalid and it takes her a while to get to and from my car. Everyone welcomed me back like it's been a year! The gentleman that sits in front bid me shaves his head. I asked him if he'd take a picture with me once my hair feel out? He said he'd be honored! lol I stayed behind to talk with a friend that has worked with my BS before to talk about how to handle my anger situation with my BS. Long story short BS told me no chemo. Debbie gave me great guidance and I hope I can pull it off as eloquently as she suggested! I was also told that SEs are different with everyone and to be prepared as they are accumulative as chemo progresses.
Unwilling, OUCHY on your nose cauterizing! Sending good vibes your way! I called my PCP and asked for a script for the Elma cream. My pharmacy called within an hour of my call to say it was ready for pick up. I love him!! Chemo class?! Now I really feel left out! When's my chemo class? Oh, I know, it wasn't ordered because my BS said I didn't need chemo! lol she also told me I didn't need to be measured for a sleeve that with only 13 nodes taken I won't have a problem with lymphodema! Do I believe her? Absolutely Not! I'll call her out on that Thursday when I see her. I wonder if it's the vinager in the drinks that makes the difference as there is vinager in the all the recommended drinks and in the pickle juice. Hhhmmmm There is no way I can drink 100oz of fluids in a day. I'd have to have a catheter hooked up and a line run to my toilet or I'd never sleep. My MO told me 6 to 8 cups a day at the least.
I'm off to take a nap BBL
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I am going to stick around to see how well all you ladies fare. Love and gentle hugs to all. I got my oncotype today. It was a 33 no gray area there. I start chemo on Sept 2nd. Wish me luck.
xoxoMichelle
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i started chemotherapy on august 1st:) my second treatment is Monday. ..how are you doing?
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Welcome Ashley. I just had my first last Monday. first 7 days were a little bit of a challenge, but today woke up and felt pretty normal. What therapy are you on and did you have any SEs after your first?
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hey girls... Got my power-port placed today... My neck is sostiff and sore! I really hope it subsides a bit and quickly.... Cause right now I'm sore!!! Did everyone else hav a stiff/sore neck after insertion? How long did it last?
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Hello Ladies,
I am beginning chemo tomorrow, well technically today, by the time I finish typing this. I have a chemo class at 8 and infusion begins at 9. I was a nervous wreck because this all came up so quickly and the fear of the unknown had me down emotionally. Growing up, being the youngest of five, I often learned about life just by sitting around the kitchen table and listening to life lived by my older, experienced siblings. Today, I found my way to these boards and found all of you, my honest, kind, sisters in a club none of us really ever wanted to be members of. As I read your posts, I felt like I was sitting around that table once again and gleaning all I can from wiser, braver, more experienced family. Notice I didn't say older, because I think I am older than many of you, lol. 53 in October. Each of you are amazing women and I feel blessed to have found you and to share this kindred experience on a similar time frame. I hope to share more of my experiences leading up to to this moment, but for now, I must try to quiet down this steroid-infused brain and well- hydrated bladder so they will let me rest. We have an hour and a half trip, so I need to hit that shower by 5:30. I want to shave my legs and armpits, so I will have a memorable reference point for the last time I shaved until my hairs grow back in. For the record, I started typing this at 11:50 but my iPad, for some reason, is only showing one letter every 5 seconds, but I have persevered, lolol! Sweet dreamzzz, all
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Unwilling, I'm sorry to hear about your husband. I think Dara speaks for all of us here. We wish you well and I know you are in God's hands. I will continue to keep you in my prayers. Best of Love to you and your family my friend!
Welcome Pinkjellyrollz! I'm sorry to hear you are joining us but so happy you found your way here. We will all be here to support you and help lift your spirits on any bad days that may lie ahead of you.
My port placement took me a few weeks to get used to and it's still a little sore. My neck got stiff and sore as well. It took about 3 or 4 days to totally disappear. I will be in your pocket for your first and last infusion as well as all of the other ladies here. You will be in my prayers.
I'm headed back to sleep I hope anyway. BBL
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Thank you all for your understanding and support! My doc called me last night and said that of course he'll do the lumpectomy plus 4 or 5 nodes and no axillary dissection. He wants me to take Herceptin, which won't cause baldness. There will be some flu-like symptoms, with diarrhea and vomiting, but that I can handle. I won't require a port. I would not have accepted a foreign object in my chest well at all. I would have wanted to rip it out with my bare hands. Nine years ago I refused an implantable defibrillator for the same reason, and got well instead. My cardio-doc's nurse prescribed some Ativan for me, so finally, I slept, and slept well all night for the first time in two months. Then my cardio-doc called me, and said he hoped I'd reconsider and take the chemo. He understands why I don't want it, though, and told me that I have the heart of a lion, lol! We're good friends as well as doctor and patient. I honestly don't mind if I don't get a cure. I know that my husband will be taken care of, and I can't do this to him - have him as my sole caretaker, because he'd mess up and I'd have a problem, and he'd feel horrible. As long as I have pain relief, that's all I ask. Besides, I read yesterday that "the surgery is the cure. The chemo and radiation is the icing on the cake." So I might just live anyway; who knows?
You, here, are the brave ones, and I admire your willingness to do what you want to do to live. I don't have the desire any more. I'm too tired of life. I would never have been able to allow the things some of you have gone through; they horrify me. At 73 years of age, things are very different.
Be brave, be strong, and be well.
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Unwilling, I am so conflicted and I can't imagine how you must feel. I won't lie, part of me reallywants you to get treatment. I would hope that there could be opportunities for other caregivers to step in and help. But I also want to respect your wishes and hope for the best in your journey. I hope that you will take each step at a time and I hope that each step brings good news and quick recoveries. We are all here for you. Much love and many hugs.💕
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unwilling- your choice is yours... And it sounds like you have made the one that works for you and how you want to enjoy a quality of life... Hard decision for sure, but I am proud of you for being strong enough to make it.
This journey, much like the disease itself, is so different for each one of us. I am a single mom doing this all alone. After my double mastectomy I came home to an empty house 22 hours post op and found a way to just get through it. I had 2 days to get the pain under control before my 9 year old twins came home and I was forced to get off the pain killers so I could drive them to events... Sometimes I wasn't sure I could do it, but I did! I need to work full time through this all both for financial reasons as much for my own sanity. I have a pretty high profile job that requires me to be in the public "spotlight" so I hope I can manage when the chemo SE kick in! I sometimes envy those of you with husbands/partners who are supporting you and nurturing your soul during this process... But that serves me no purpose- and I quickly change my mind set. Sure, friends step in to offer help- but it's not the same as someone you know loves you to the core who can just hold you when you feel like your heart is breaking in fighting this.I am a fighter... Always have been- I have young kids who need me and who look at me to be strong.... I need to give this everything I have got, even if I am crying in my pillow when the house is silent and no one knows. That's why I am so thankful for you all... You are my place to turn when I feel like this is too hard... So THANK YOU!! Together we can get through this.
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can't stop my tears as I am writing...I guess today is one of the bad days for me...not from SEs or anything...but feeling emotionally down....I really feel for unwilling...and hope in reading your situations....life is just too cruel...to some of us....I have the support of my family, and I am doing this for my girls ..but I am such a weak person, i have always been amongst my family or circle of friends....I can't see how I can beat the odds...and win this battle...there is no winning in this is there..is loose loose situation...I have totally ruin the future of my once a perfect family...I had the perfect life, job, kids,husband , house, ...and none of these belong to me anymore...its me who wrecked it all for them.....I Can't even look into the mirror...with my existing body...when will this nightmare end? Never? Until I RIP?
Sorry I dunno where else to vent but here....hugz
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Scary, I wish I was there to give you a hug! I'm so sorry that you are feeling so sad. You have already been through so much, so no, I do not accept that you are a weak person. Maybe just holding yourself to an unattainable ideal. None of us are perfect and all of us are perfect... Love and hugs!!
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I am so glad I found y'all again ... I couldn't get into the website nor could I find where I posted ... I'm so lost.
I had my first chemotherapy on the 9th .... I was hit hard on the weekend but I feel better and fever free now. I wish I could of found y'all this weekend for support but had zero energy and a fever. I don't need a port because all those ugly veins on my hands have come in handy. I had the Neulasta which was placed on my stomach and it auto injected.
Hopefloats I wish I could help you in some way ... If it helps my ever loving husband Louie embarrasses me at every appointment I have to take him to .. I have threatened to leave him in the car.
Unwilling I know each of us has our story and we will be here for you.
Pinkjellyrollz welcome
I hope I can find my way back ladies 💕
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Cali, mark this thread as a favourite topic, then it will stay in a separate row under "discussion board"... Haha your description of your hubby at appointments made me laugh... We want them there, but don't all at the same time! Haha- men!
I have never had an issue with blood work or IVs so wasn't sure I needed the port, but my friend who is a chemo nurse told me to do it for sure... And I had to laugh at the irony yesterday, when prepping me for the twighlight drug and placing an IV, it took 4 pokes (more like digs), and three separate nurses to find a vein!! Apparently my being so tense didn't help. In any event, I was relieved to know that was the last of THAT for a while.... Now just wanting my port to heal up.
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Dear friends,
This seems to be such a hard week for us. Like Scary, I am 39 and finally have the life I have worked so hard for. Great house, awesome job, I just earned my PhD (finished after diagnosis in July!), one little and one on the way. My onc last week told me she was scared for me because the grade of my cancer was so high and I am nearly triple negative. That wasn't fun to hear. Now I can't stop thinking that this could be the beginning of the end for me. That I am going to leave my husband behind with two little kids. I'm sorry to be so dark, but I feel like I have to smile and be positive to the world but I am so scared.
But I must move forward and be happy about what I can be happy about. Chemo isn't that bad for me. My side effects were manageable this weekend. EAT GRAPES DURING RED DEVIL (A of A/C) FOR MOUTH SORES. (Advice from a friend.)
Michelle - STAY HERE! You are part of us. And September 2nd is practically August.
Hello Ashley and Pinkjellyrollz (and any others new people I might have missed). I started AC last Thursday and despite my doom and gloom today, I felt better after it started. I was so scared before - I was a wreck the day before and morning of. But now that it is done, the fear of treatment is gone. I hope you have that, too.
Hopefloats - Big hugs. It seems like this journey can be a lonely one. I am so glad we have each other. Congrats on being super mom. Your kiddos are lucky.
Unwilling - I am so glad that you have made a decision that you find peace with. I hope you stick around, but I understand if you are ready to put this part of your journey behind you. I will pray for swift recovery after your lumpectomy and many many good years of cancer-free life! I am sorry about your husband.
Thanks everyone for letting me unload.
Lots of love,
Annie
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feeling better today. Haven't posted too much but hello to all the new people. Unwilling participant. I have the same diagnosis as you only my tumor was 2.5 centimeters. The herceptin is not bothering me at all when i have it seperate from the chemo so dont worry about that. Best of luck to you and your husband.
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Hi all of you wonderful friends... Today is day 9 after 1st infusion, and I must say I pretty much feel normal. (My husband says that's all relative! :-) ) I just keep telling myself that this really isn't so bad, and it it's basically 4 weeks of yuck to get an extra edge against this, I'll pay that price. Still no nausea whatsoever, mouth sores have quieted, and I am getting taste back. Tired and need a nap many days, but am back doing fun things like me hammered copper jewelry projects.
Pinkjellyrollz, welcome but sorry you need to be here. I am active on just 2 links, Lumpectomy Lounge and this chemo thread. I honestly don't think I could have kept my sanity without the compassionate intelligent women I've met. I don't feel at all isolated, and feel safe to discuss and ask questions. I am older than many of you (just turned 65) and am in awe of what you do. I am super active although retired, and very involved with art groups, classes, and family. But at the end of the day, I can just stretch out and not worry about playing, supporting, feeding, bedtimes, stories, homework, housework, and all the other myriad of responsibilities that go with being a mom or a working mom. We need a volunteer group for moms with bc with women who have been there and maybe could use a hand doing the little things. Some of you who have little ones or no spouse, etc. I'd be happy to pick up prescriptions, groceries, run errands. Maybe I'll look into that when I'm done with treatment. I feel like I'd like to give back, even for all I've already received from this site.
Annie, you really are an inspiration! And congrats on your PhD! That is an accomplishment under any circumstances.
Hope, it does seem like this is a hard week for many. I wonder if it all follows the progression of the chemo. We're all 1-2 weeks out; maybe the adrenaline we experienced to gear up for the first infusion is beginning to wane. My scalp is getting pretty sensitive so I'm wondering if I'll start shedding soon. I just hate the thought of going in to have my head shaved. People say it's better to be pro-active and feel it is me who is in control of my hair. (yea, right!) I have my scarves and a couple of hats and a wig ready to go. I laugh because my 9 yr old grandson keeps checking out my hair (surreptitiously) whenever he sees me. Kids are so funny. His parents have told him I'll loose my hair, but I think he doesn't want to ask.
I really really believe that a positive attitude plays such a huge role in our recovery. I've tried to eliminate anything negative and focus on the future and all I want to do with my life. I've even unfriended a couple of people on FB because they were negative etc. Course, it's not a real convenient philosophy to have during an election year!! LOL. I'm not saying I don't have meltdowns, but I find the minute I start going down that road, I distract myself with something fun.
Sorry this is a long post. It's cathartic to share with people who care. Thanks. Hope all the rest of you are having a great Wednesday! Dara
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I never really properly introduced myself, just starting posting. Like Dara, I am more "mature" at 67 and also quite active. We have four children and five grands, all here in town. Since my husband will never retire, I decided to start a business on etsy, making and personalizing infant and toddler clothing. Love it so much but I can leave it whenever necessary. Those of you that must work and raise a family are the true rock stars.
Annie, I don't understand why your Onc would say he is scared for you. Your diagnosis, other than complicated by pregnancy, does not seem aggressive. No lymph nodes, Her2, etc. Don't let him get you down, you will get a beautiful, healthy present at the end of this the rest of us won't! Moms are the toughest people around!
I am doing my second chemo tomorrow, should have been today but they were already booked. Have felt absolutely great past week. Even before that except for steroid withdrawal and slight mouth dryness. Will taper on steroids this time and suck on ice during infusion. Cold capping so no hair loss ( on head anyway 😉). Will try Allegra for neulasta shot this time although did not bother me first time.
Good luck to everyone on next infusion! Before you know it we will be done and it will be the holidays
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kechla, thank you. Feeling much better this afternoon. Gone out shopping and plan to do some baking when my girls back from camp...mama ship can't sink...will continue to sail......one wave at a time....
Annie - can't recall if I said this before, but you are my inspiration, hang in there mami!
Jiffrig, good luck tomorrow. My second is on Monday. That's great u r cold capping...I am likely gonna cut mine short on the weekend. I am feeling the tingling feeling today.
Agree with Dara - gotta stay positive.
Hugz to all! Xoxoxoxo
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Thanks for being so supportive everyone! I am usually super positive - just having a rough day. I definitely beleive in staying positive!
Lots of hugs,
Annie
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port site and neck are still super sore, hoping I wake tomorrow feeling an improvement!
Had a follow up appointment with my PS today, we talked about revisions, since we know there will be some needed. I was so relieved and comforted by his saying that he will keep tweaking and revising until I am 100% happy with the end result....that it's not like a warranty with one shot at getting improvements, but that he will do it as long as we both see an opportunity for fixes....all covered as part of the reconstruction process with my health care. We will start in 7 months- mostly some shaving off of the infamous "wings/side fat" that were left (and always spilled out pre-BMX so taking this off will be awesome! Haha)... And then just some fat grafting from my stomach and waist area, to fill in my breasts to make them a bit more full (650cc implants were immediately placed at BMX which took me to a C, but he's hoping to get me back to a full C or D. It's not that I look forward to more surgeries... But knowing I won't be left hating my body is a Godsend! his is a little happy news I needed today!
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Hello all! I too am joining this exclusive club with my first infusion on Friday the 19th. I'm a 51 yr old (ugg!) single mom with a son at home and daughter away at school, but nearby. Trying to keep a positive attitude and find the upside in situations if I can. Glad to 'meet' you all and look forward to having people to go through this journey with that truly understand!
Still working on my signature
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Welcome Sherri, but sorry we meet under these circumstances. I think the first infusion is the bardes, but only because we are all so anxious and unsure of what to expect. Are you planning on icing? Do you have the list of things you might want to bring with you to the infusion? We're all finding that having access to ice chips (to suck on), bags of ice for hands or feet, and then a number of things listed on the "Chemo Bag" list is really helpful. Do you have a port? If so, you may want to try Lori's fix for metallic taste with the pickle juice. (We all laugh, but it does seem to help.) Our dx was just about the same time, but I had only a single lumpectomy. Glad you have your son there with you. Ask any questions you wish. This is the most supportive group of women, and we are all here for each other. Good luck getting ready for this next stage.
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{{{{{Everyone}}}}}
Michelle, we are all here because you opened the door for us. I agree you need to Stay Home with us!! September 2 is only August 33, 2016 to all of us! Besides, look how far we've come! Please STAY!
It sounds like a lot of us are feeling the same way at the same time. ME TOO! I won't go into a long drawn out post but I've been thinking and feeling a lot like all of you. You are All my HEROS!
I also have round 2 tomorrow morning. That means one less treatment and closer to being done. Although I won't be done until Christmas, I couldn't ask for a better gift than my last treatment!
My hair had been slowly thinning for the past week. Well, it's gone from thinning to falling. I'll be bald within the week, if it even takes that long! Here's what I get every time I scratch my head.
Handfuls at a time! My feelings go from "Oh well" to " Holly cow! It's true"! I have my Look Better Feel Better class this afternoon so I'm really looking forward to that and all the little goodies they give us. There was a very loud "so not me" scarf at the Olcott Center the last time I visited and if it's still there it's coming home with me. I need a "Totally not me" weekend!
You are all in my prayers! I truely believe we are all in this together! Hugs and so much love to all of you!
Now that it's almost time for me to get up and get ready for all day appointments I'm finally falling asleep!
BBL
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The whole family took off work to ride with me for my first chemo. They attended the chemo class and my daughter, a medical tech at a hospital, cried so hard when the nurse went over the side effects. It was a good opportunity for us to bond as a family and provided common info for them that I have already been researching and learning here from all of you here.
I want to send much love and hugs and encouragement to each of you. Wherever you are in thisjourney, know that you are being lifted up every day! Thank you for welcoming me with open arms.
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This one is a snapchat filter, but in my mind, this was my day, lol!0 -
.MedOnc's scheduler called three times yesterday, and finally his nurse called and insisted that I just listen. He wants to see me about alternatives, like AI. Nope - that is contraindicated in someone with osteoporosis as bad as mine. I told her I will not be talked into any of those things, but will take Herceptin. She said that if I want Herceptin, he's the one who prescribes it, so I HAVE to talk to him. OK. 8 AM tomorrow - and 70 miles away. I also will see SurgOnc for a talk at 9:00. I will get my pre and post-op instructions. That very kind and sweet man understands, is disappointed, but he won't pressure me further. I will only deal with him pretty much from now on. I like my doctors, but three is one or two too many. LUMPECTOMY AND SENTINEL NODES REMOVAL WILL TAKE PLACE MONDAY AT 11! No axillary dissection! Woohoo! Finally! Yay me! All I ever wanted was to get this tumor out, out, out! Knowing the list of 13 or 14 things I won't have to go through which I sat down and listed, vs. what I would gain, profoundly relieved all my fears and anxiety. I will give a copy to each of the docs tomorrow. It is simply way too much for someone my age and stage of life. I have no fear of dying, but the fear of the treatment regimen and its aftereffects could have led to a disaster. You youngers should do all you can to fight this monster; I can hold hands with it and walk down the road, giving it a good kick in the shins once in a while, and I'm OK with that. Maybe surgery and Herceptin will make it all disappear, and maybe it will just hide for a while. If it comes back, I know its name and it no longer frightens me, because I know I will have comfort and rest at the end of my road, and that's all I ask. I was only seeking pain relief - palliative care - when I got put on an express train to someplace I don't want to go. I won't allow them to turn me into something I don't want to be during the journey. A little chemical help from another arena provides anxiety relief, and I needed that. Thank God for good experienced nurses who understand and help where it is needed more! No one can do anything rationally without having a good night's sleep in their arsenal.
Scary, I hope you can find someone like my nurse who will hold you, let you cry like I did, then prescribe something to help you stock up on some real sleep; from that comes tremendous strength. All this information, and having so many things thrown at you that are very scary wears down our defenses. Find whatever sustains you and fill yourself with it!
I had more energy yesterday after two good night's sleep than I have had in the last 3 months! I returned the 7 wigs, and got hugs in return. Positive! I have been designing some pretty tops for chemo and radiation wear that will provide a lot more modesty and dignity than hospital gowns. Positive! As one person put it, "no one should have to sit naked in front of a group of strange men". Someone in Texas sent me a "dignity robe" that some groups around the country are making and donating to cancer centers. It's fine, but I have made things for myself that are easier to care for, much cuter, and far less expensive and less time consuming to make. I have already talked to some people at my cancer center and they all loved them, even the radiation onc! I really want to make them to donate to those who would rather wear something pretty of their own than an ugly hospital gown that will leave them so exposed. Stay tuned!
Tomorrow: At 11:30 I have a brain CT, followed by a maxillofacial CT at noon to see why I still have this infection in my nose. While I was on the phone with all those folks I had a paper towel stuffed up my nose because it was bleeding again. They could not have started chemo anyway with an active infection going on. I have many positive things happening, and that feels really, really good!
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Morning Ladies! I am trying to read back on all the posts for helpful hints on these lovely SE. I keep having this chest pain when I eat but I'm takin Nexium so not sure what's up with that.
Unwilling it seems like today is a better day and getting some sleep must be great ... I drink fluids like we're supposed to just to pee all night it seems. Sleep would be nice.
Scarysadday I am so sorry you were feeling so low and I didn't even give you any words of encouragement. I hoped you got to do some baking with your little ones. I have trouble keeping up on the posts.
Pinkjellyroll those pictures are so cute ... As cute as chemotherapy pictures can be. I will have to figure out how to post pictures of my big day last week.
We have 3 infusions tomorrow right? Thank you for the hair share Whenchlori. 😳 I'm waiting!
I am going to attempt to go in to work and organize my office today for my sub starting next week. Y'all have a fabulous day
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Morning all. Welcome back Caligirl. And Lori, great hair pic! Mine's still holding on, but my scalp is really sensitive. pinkjellyroll, such awesome pictures! And I think it's great your kids went with you to chemo! My son and DIL came to all my MO appts with me and we laughed because between them, me, my DH, the nurse practitioner, when the MO tried to open the door he could barely come into the room. I really think it helps to have others there, hearing what is said, seeing what goes on, so they can really be there to support you.
Yesterday was a really good day. Energy came back (with the exception of a nap in the afternoon,) and I went out shopping for a couple of new scarves, went grocery shopping, and out to lunch with DH. Mouth is still tender, roof of mouth is peeling like when you have burned it, but taste buds returning so I feel more like eating. All else is great. The ladies I went to the jewelry making class with on Saturday are keeping me going finding supplies like torches and materials for us to continue. Meeting friends tomorrow before school starts for them next week.
Thinking of everyone starting infusions today. I felt so much relief just knowing I was 1/4 done and knowing what to expect. For me the unknown is always the hardest. It's not fun, but it is doable.
We've got this ladies!
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it's the eve of my first infusion... I think I'm ready. I did last minute tidying up, my port site feels a lot better, I had a long hot shower and am now relaxing. Tomorrow morning I will wake up, take my premeditated and head out to the cancer centre. I'm hoping I feel well enough to head out later in the afternoon to watch my boys in a wrap up hockey game after training all week. They really want me there, but know that it may not be possible. Without steroids, who knows how the other meds will affect my energy!
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