my friend mary in wisconsin that had no evidence of melanoma for 14 months found out on friday that the melanoma is back. she had a lump removed from her leg and it is melanoma again. the tumor has been removed. so we need to send her our good vibes, love, and prayers that they show the margins are clear and that her pet scan (full body scan) to follow will also be clear.
thank you in advance, both mary and i really appreciate it. we have been rooting her on for years in this space and i wish we didn't have to do so for this reason, but i do believe that we are going to bring her some magic.
i also wanted to note that kelli continues to be very grateful for the happy mail that she has received and has been overwhelmed (in a good way) by the kindness. so thank you and know that your time and efforts are being so appreciated more than you can imagine. kelli participated in a ragnar race around mt. rainier this weekend and their team ran 127.2 miles over 30 straight hours in a relay and climbed 38,000 feet in elevation. they wore shirts that said "johnwoulddoit" and the woman giving out the medals gave one to kelli in honor of john. she kicked some major ass this weekend and said it was john she did it for and only because of him that she was able to finish.
thanks for all the love you all send out into the world to people you don't even know. it makes such a difference in lives, and it makes me happy to think that about all the mail, prayers, vibes, and mojo that criss-cross this country on a daily basis for those who need it, including yours truly.
with that, we start another week. here we go peeps. xo
my friend kirsten in texas - woohoo!!!!!!! it is fun to have some more happy mail crossing the country in the next week as she gets to pick out cards and they get shipped;)
day two at work was tiring but i made it.
no major side effects yet (or ever would be my preference).
happy thursday peeps, we are one day away from friday.
first, here is your final reminder to let me know today if you want in on the card giveaway i am doing to celebrate the good news on my scans. for all of the info, click on over to the yesterday's blog post to get the details. but you need to let me know by 9pm wednesday so you can be entered in for the random number generator gizmo to pick you!!! today was my first day on my new meds. the work they work is that i take a steroid in the morning an hour before i eat, and then the treatment med two hours after i eat. then i repeat the pattern after dinner. it is hard to remember to not eat within those hours and get myself back on that system again. but i will get used to it. today was also my first day back at work. it felt good/odd to be back and in some ways like i had not been gone for 6 weeks and in other ways that so much time and so many things had happened. so it will be a learning curve as i get caught up.
i also drove for the first time in 6 weeks today and am happy to report i can do it again with no problems. ah, independence.
i also wanted to share beth's latest update since she had a post today so that you know how things are going and have included it below. keep sending her the love.
i also wanted to mention that the kelli happy mail campaign is underway and she is so, so thankful and overwhelmed by the generosity of complete strangers. thank you. thank you. thank you. have a good wednesday peeps. we are halfway there. yes to that!
Tomorrow marks the start of my eighth cycle of chemo. Last time I only did 8 cycles so this should be my end. And yet it is not. I have a long way to go. It's still really hard for me to grasp it at times and do a mind shift. I like being able to count down and have a finish line. Right now my finish line is 2 years. Some of my side effects are building. I definitely have fatigue. I get really wiped out in the evenings if I haven't taken a little cat nap. My hair loss continues and I have started to wear my hair cap again. It's weird to wear it again and I am getting used to it. But my hair is looking really bad without it. The hand foot syndrome is what is causing me the most grief, more than neuropathy which has been manageable. My feet get all read and feel inflamed which isn't the most comfortable feeling. And unfortunately this side effect is from the chemo in the pump which is what will be on going. I talked to my oncologist last week and we may be reducing a dose here soon to see if it helps. I asked him if it was bad to reduce the dose and if it would effect my treatment and results. He didn't think so. He said it's common for people to reduce their dose and that is what they stay on. I never thought I would keep at this dose but thought maybe I would be able to keep it up longer. Hopefully a reduced dose when it happens will help all around with how I feel, less fatigue, less hand foot syndrome. Once I drop the one drug my fatigue should get better according to my doctors. I haven't been able to do many walks these days because our air quality is so awful and they are telling us to stay indoors. As I look out the window I see so much smoke. It does start to bother me with my lung issues. So I am looking forward to better weather and less fires. My next set of scans have been scheduled. Sept 17 with results on the 18th. These will be critical scans, they should start to show if the immunotherapy is working. So I am really hoping for shrinkage this time! In others news Lars and I flew back to MN a couple weekends ago for our first wedding shower thrown by family friends. It was a lot of fun and great to see so many people I haven't seen in ages. Their support both in our marriage and in my treatment means a lot to both me and Lars. Lars and I got back our photos from our engagement photo shoot. They turned out really well so we enjoyed looking through them. August has definitely been a busy wedding planning month. We started tasting wedding cakes and booked a bunch more of our vendors. It's been fun and work and I am so thankful to have our wedding planner to help take some work off of me. I have noticed some people at work treat me differently. They don't reach out to me, ask me to do things or invite me to some meetings trying to leave me alone while on treatment. I had a talk with one of my bosses last week asking for people to include me on things and let me decide what I can and can't take on, rather than them deciding for me. He is one of the ones not treating me differently which I appreciate. But it's a struggle. I get it. But I want to still contribute here and I have actually been really busy. On a good note I found out last week I won a big project I proposed on. And it's a good win and I was glad to still be doing good things for my company and for me. I want to still feel useful even though I know I cannot do it all and I don't try. I do know my boundaries. Alli has had her highs and lows recently. Her new meds started making her really sick again so she had to go off of them. And I get the disappointment when you just want these meds to work and if you are sick you want them working that same magic on the tumors. She then just had scans and is showing some shrinkage of her tumors!! Which is such good news!! So they are starting her back on one of her last drugs at a lower dose and will keep an eye on her to avoid the fevers and fainting. My heart breaks when I know how bad she is feeling but she is a fighter and will go back in the ring as she puts it. So we are all pulling for continued good results. I have been having fun recently with seeing friends and Lars and I went to a lot of sporting events over the weekend. And I dread tomorrow as I start to feel bad again for a good 5 days. I look forward to my bounce back times in between treatment. Those are some of thoughts that have been rattling around in my head recently. I thank you for your love, support and prayers.
sorry this is so late in coming, i had to take some nausea pills on top of my anxiety pills and the combo hit me hard this morning for some reason so i have been out of it most of day sleeping.
we got good news!
the largest tumor that was 1.9cm x 1.5 cm shrunk to 0.5cm x 0.2cm. the other measured tumor went from 0.5cm x 0.4cm down to 0.2cm x 0.2cm. my spleen was a little enlarged but the doctor just wanted to keep an eye on that. given those results i am going back to one of the original meds from before my first hospital visit but at a lower dose with an added low dose steroid to try and control the fevers i had before. will start those meds early this week and then come back for check-in doctor appointment in 2 weeks. scans would probably be 2-3 months out depending on how i tolerate the lower dose. these meds haven't always had a lasting effect of keeping the tumors away permanently but it was great news for the interim and for today.so thank you for all of the love and prayers, they worked!and since to me it feels like the posts i have had to write lately have been crappy news for a long time, i want to celebrate today's good news with a giveaway. yes, a free giveaway! the giveaway is 5 of my sister's photography cards that are in her etsy shop. so you just let me know however you can (text, message, email, comment on blog, etc.) that you want in and the random number generator will draw the winner on wednesday night. i will then connect you to my sister, you pick out the 5 cards you like, and she will send them to you. a little fun in the week!!gloves up.anywhere i fight, you fight.xoxo
it has been quiet here because i have been quiet this week.
i don't know what to say about our meeting with the doctor and would say that i likely still haven't taken it all in. but i am starting to process it.
i think now as a delayed side effect my hair is falling out because it falls out in clumps in the shower and falls out when I am sitting still. we will see and I will check on that tomorrow.
my appointment to get scan results is tomorrow at 7:45am. we did scans on thursday as they moved it up from this week so the week is going to start off with that critical appointment.
i am also supposed to return to work tomorrow but we will see how that goes pending the appointment.
so please send the love, mojo, prayers and everything else good you have got our way.
I am going to make this short and share a text I sent as I don't feel like writing anything else right now or being on the computer.
so not good news today with oncologist today. he is keeping me off the treatment meds due to the side effects. i will come back next week for scans and to meet with him again. pending those, we will see what options i could do since my body has rejected so many of the others. he said there aren't many options left, so maybe we do look at open chest surgery and/or going to texas or maryland to see if i qualify for anything there. we are of course totally devastated yet again.keep the love coming.xoxoxo
just a little catch up session from me. my side effects continued through most of this week (joint pains, etc.) but then Thursday night I spiked a fever to 105 and have had fevers on and off since. so on Friday my oncologist pulled me off my treatment meds. which is always devastating even when I am in pain and dealing with fevers. I want those meds to be doing what they should be doing which is fighting the tumors. the other devastating part of that is that he may say he won't put me back on them which will yet again be one more option for me that is no longer really an option. so we meet with him tomorrow morning at 10 to see what he thinks and where we go from here. it has been a tough week for sure but hopefully we will have a path forward tomorrow and I can get back on the meds. we shall see.
gloves up.
anywhere I fight, you fight.
and I leaving the capitals in because my big brother will already be mad at me and that will just make it worse if I take time time to fix them.
in addition to the issues that i noted in my last posted, i have had joint pain all over my body (down to my toes and fingers).
it has been so painful that i can't get myself up and out of chairs or walk by myself again or of course drive at all. so i am back to using my grandpa's cane to help me get around. good thing that barrett is strong as we finally got to the point of him just lifting me up and down so i don't have to use any of my weight because it hurts too bad. just in the last day, i have been able to do some things by myself even though it hurts.
malena and i are scheduled to go on a day trip tomorrow with friends and so i have been resting as much as i could and trying with our nurses to find the right pain combo so i don't have to cancel yet one more thing for her. it is still high temperatures here and since my skin can't be exposed to the sun due to the sensitivity from the treatment drugs, i will be the one wearing long pants and having a golf umbrella with me at all times. it is what it is. if it means i can make this trip with her, then all of the pain and the crap i have to deal with to do it will be worth it. wish me luck.
we think that monday is my check-in day with the doctor to see if we up the meds. we will see what he says based on how this week is going. no set days for scans yet.
i hope that your summers are going well and are much more fun than being in a lot of pain and bed most of the time. if you can get out, get out. go to the park. get your feet wet. go the playground with your kiddos. take yourself to that movie you have been wanting to see. take that drive you have been wanting to do. go get that ice cream cone you want. walk you dogs. check out a new beach or trail. just sit and breathe. whatever you want and can do. do it. and make sure if you are outside you wear you sunscreen the whole time. and reapply. of course. or you know i am coming after you, and i have a cane too now.
also, reminder if you would like in on the happy mail for kelli campaign it is never too late, just let me know and I will hook you up with kristy the awesome coordinator for this round. she is pretty awesome right? right! ps) I got a comment from someone who knows my friend jen nik but you show up as "unknown" so I don't know how to contact you to get you on the happy mail campaign, can you let jen know who you are so she can connect us? thanks!!!!!!
+++ i have a bad rash on my legs and my right arm which is now getting better, but has been painful all week. it makes it hard to walk when your knees hurt so bad. so i have been in bed a lot of the week. which sucks. working with my nurses to see if we need to add anything else into the mix or these are just the side effects we knew would come. +++ i have been able to make two trips with barrett and malena (ones close to home as we don't want to travel very far these days) which has been good in the midst of everything else and before the side effects kicked in at the start of the week. +++ fatigue is kicking my ass, talked to my nurse about that today too. not that i don't love naps, but i would love to be up more than i am down. so we will see - it may just be the combination of going off of the antibiotics, the steroids, back on to the treatment drugs. but there are moments i can barely keep my eyes open and so that also added to me being in bed much of the week. blah.
+++ i met with my psychiatrist this week to catch up after hospital stays and all that has happened in the last couple of weeks/overall last month. it is always good to catch up with her, and i usually do not get a word out before my tears start to fall. it is always good in that it is hard to talk about some things but necessary. and she brings some things up that maybe i don't even recognize myself or have not said out loud. i need to continue to find my way through grief (not that grief reaches an end point) on the decisions made and all that has been lost along the way. +++ we have put yet another vacation on hold. we had hoped to take malena to disneyland at the beginning of august but with how i am feeling that isn't going to be possible. disappointing for many reasons. and another one in what seems like never ending decisions that results in letting one more thing go. +++ you can sign up to do happy mail for kelli if you want to participate: all the info is here
thank you to all who have already signed up - and if you have signed up and i haven't yet connected you with kristy, ping me again because i think that i have made all connections to date with people who have signed up and connected them with kristy. +++ I also wanted to give an update on beth. here is the latest in her words:
Cycle 6 of chemo is done. It went as expected. The new anti-nausea med didn’t work quite as well this time. Which is unfortunate. I was tired and didn’t eat as well. I hope it works better next time.
But what is bothering me most of all is that every Sunday night after chemo since I started this new drug I can’t sleep. I slept probably no more than 4 hours last night. And I’m exhausted and it makes me feel ill. Since it has happened 3 times in a row I feel like there is a correlation to some rebound effect to the new anti nausea med. So please pray for sleep for me. I need it. It’s hard for me to function. Other than that it’s been going fine. Lars and I tried to do some registry stuff on Saturday but I was tired so it wasn’t our best effort. We went to church yesterday which was good for my soul. To be around people who I know are praying for us. Last night we took a drive and took a walk along Lake Washington on a hot summer night. It was really nice. But mostly my treatment weekends are made for resting. So I am glad I got Good rest leading into the week and now I have to catch back up. This coming weekend we are headed to MN for our first shower. It’s a couples shower so Lars gets to go too. We are looking forward to it. There is so much to do for the wedding but treatment ends up being a priority always. Cancer treatments definitely puts your priorities in order. I don’t get too worked up over the details. I never thought I’d be planning my wedding with Stage IV Cancer. It’s hard for me to even write that. I don’t want to believe it and sometimes it still doesn’t seem real. I am balancing something so good in one hand and something so bad in the other. It just makes it tough. When our wedding planner asked us what we worry most about for our wedding I said that I will feel well and have energy. Not the typical answer but that is the truth. I just want us to enjoy the day and not have cancer be any part of it. I’ve been getting tons of great happy mail which I am so appreciate of. I thank Alli and her friends for arranging it. It does bring a smile to my face. A quick update from me. Thanks for your love, support and prayers.
+++ still super thankful for all of the love, prayers, and mojo. one day at a time. xoxoxo
