I hope you are keeping in touch. So many times in the last few weeks, I have thought of you and wondered how you are.
Thinking of you, as I am sure a lot of members are.
Please let us know how you are.
Thank you everyone for your kindness, thoughts, prayers and messages. I appreciate all of the emails, especially from mariposatraicionera (thank you Elizabeth)! I'm doing well. Just had another chemo session today. My tumor markers (keep decreasing in size and my last CT scan showed shrinkage in all of the tumors and no new ones. Another CT scan on Monday and results on Wednesday. Always a nerve wracking experience! Although the chemo involves weakness, fatigue and moderate to severe bone/joint pain; it's not as bad as I feared. The "off" weeks 9every third) I feel more or less like myself. The doctors have finally stabilized my blood counts (with many shots daily, weekly and monthly) so haven't had any transfusions in over a month. While the doctors are very careful to keep emphasizing that this is ultimately not curable I am going in the right direction and every added month (dare I say year) with my family is worth it!
I've also hired a "mother's helper" to help with driving the kids to activities, light housekeeping, laundry etc for 15-20 hours a week. This has made things more normal for them since they can have friends over to our house even when I'm bedridden. Also she took them to bowling, movies last week during school vacation week so they weren't stuck in front of the TV as i had a bad week. A big relief for me!
Sad news today that a longterm teacher at my kids elementary school died yesterday of cancer (she had been on leave since late last school year so this mostly affected only my 5th grader). It did bring home to him the fact that people do die of this. However, the school (which has been wonderful) handled the news with great sensitivity telling the older grades (4 and 5) in class and having an "open circle) to handle questions and feelings. Younger grades (they had less contact with this teacher) will be told if questions arise. But my oldest is visibly sad this afternoon!
Once again thank you everyone and kepp those positive thoughts coming my way!
Hey girl, I was going to post a response letting the OP know that you were okay, but decided against it.
That's such sad news about the teacher. Are your kids asking lots of questions or just looking upset?
Hope you continue feeling better this week. Take care and enjoy your kitchen! Mine is still in the planning stages and it's really a nice break from the real stresses and issues facing the family.
Lots of hugs!!!
Holly: The "mother's helper" is a stroke of pure genius. Good for you! You're in my prayers.
Holly, I'm so glad you wrote. You continue to be in my thoughts. Are you able to take any pain medication that can effectively address the bone pain? I'm glad the "mother's helper" idea is working for you. And please go ahead and dare say "year"!
Hollybolly, you are in my prayers. Every additional moment is precious -- may you enjoy years of precious moments.
Thank you everyone. Flyleft - I can get pain medication but since I'm taking so much other medications: antinausea (3 different), benadryl and steroids (to prevent allergic reactions to chemo), antibiotic mouth rinse (to prevent mouth sores), prevacid for reflux, blood thinners to prevent clots (2 injections/day), injections to boost white blood cells to prevent infections, injections to boost red blood cells to prevent anemia and transfusions, injections to put me in menopause to stop bleeding (in case the chemo didn't do it), low dose estrogen to deal with the hot flashes etc. And assorted other drugs as things crop up ; those are just the regulars. Anyway I don't want to take anything I don't have to and don't want to be "out of it" so I take extra strength Tylenol (no more than 6/day to save my poor liver) and it makes it bearable. Long answer a simple question. I've found that there is a drug for everything and another one to treat the side effects of the previous one.
Anyway no complaints I'm lucky to have access to all of them and they do keep me more or less comfortable! Also my doctors are very eager to recommmend alternatives to conventional drugs which i find pleasantly surprising for a top institution such as Dana-Farber. For instance they recommend acidophillus pills for upset stomach, popcorn for constipation, vitamin e oil for chemo skin changes, root beer or cinnamon candies for chemo taste changes etc. They all work great and no side effects!
Thank you everyone for showing an interest and letting me vent. It helps!
I'm so glad you posted Holly. It sounds like you are in good hands. You must be a very strong woman. Keep us posted as we all really want to keep praying for you. Try lemon drops (the hard candy) for the nausea. I have heard some people say that it helps.
You are so right, every moment we have is precious. You have reminded me to appreciate my family a little more and to be grateful. Thank you.
Thinking of you and your family. Keep venting. We want to hear how things are going.
Crystallized Ginger for nausea! I swear by it during my migraines. And Holly, I remember and understand about the endless parade of meds. It just gets to be "enough already!" sometimes. Your last line in the first p'gh (a drug for everything...) made me LOL, btw :)
Sending positive thoughts your way, Holly.
Good to know you retained a mother's helper to conserve your energy and keep you fresh for those precious hours with the little ones. Hope the Wednesday CT news is good progress for you. I hope your older son has a school social worker or counselor to continue to help process the "sad" feelings. Sometimes art therapy is another good tool for the children.
Popcorn for constipation! That's a new one to me! Yes, the alternatives are very big now and many are so smart when you think about it. Take care and get rest.
So glad to hear you are doing well: difficult times help our children become better, more adaptable adults when they have parents like you to guide them. The mother's helper is a wonderful idea;I bet your kids like being able to keep things going with their friends, and I bet that lets you relax more so you can heal better. All my best to you.
Hello everyone. Good news on the last CT scan: the tumors keep shrinking (some even disappearing altogether) and no new ones. However my body is taking a beating from the chemo and I needed several transfusions. They had to cut the dosage of the chemo by 20% to give my bone marrow a break. This is the second reduction and anymore would make the chemo ineffective. So if my blood counts keep falling then I'll have to take a "chemo holiday" for a few months. The trick is to get the tumors as small as possible before that happens.
Overall i'm doing well. The kids love the nanny and seem more settled. My husband is able to reduce his schedule without affecting income/insurance etc so he'll work 4 days/week and get to spend more time with us. If everything goes well we're planning on going away for Easter break to SC where my father has a place.
Wonderful news! Still lifting you up in our prayers!
Oh Holly--I'm so glad you posted...especially such good news. Sounds really good. I hope you are doing OK on the chemo. I know that it is rough. Have they given you any of the drugs that stimulate the bone marrow to produce white blood cells?
Stay well and keep us up with what is going on.
How old are your children if I may ask?
Wow, (((((Holly))))! That's splendid news. You're such a courageous woman to go through this with such style and strength. I'll be hoping you get to go to SC for Easter, but if your husband gets to be home one more day a week, you'll have a new holiday at home every week anyway :)
Thank you everyone. Yes I get Neulasta to stimulate white blood cells and that works great. I also get Arensp for red blood cells (doesn't work as well as the Neulasta) but there is nothing to stimulate platelets which is my biggest problem. All of these drugs are incredibly expensive ($3000 - $5000) for a single injection but luckily our insurance covers it all. I've sort of become fixated on medical especially drug costs which are outrageous!
My kids are 5(six in a few weeks), 8 and 10. I managed to drag myself to the middle school open house this week. My oldest starts 6th grade next year and the youngest 1st. Can't forget my poor middle child; he goes into 3rd. Also managed to drag myself to the parent preview of the "puberty movie" that they'll show the 5th graders. Very well done! These milestones are so important to me!
Once again thank you!
Thanks for letting us know what is happening with your treatment. Sounds like you have a wonderful husband. It is so good that he can be with you and the kids more days as you go through this arduous treatment. I hope he himself is getting as much support from family and friends or from a caregivers support group as he needs to energize him during these challenging months.
Meeting with or talking to others in treatment or post-treatment can be a very helpful part of your own journey as well, as you have probably already discovered at Dana-Farber. You are fortunate to live close enough to such a top-knotch treatment center.
Really nice to have the trip for you all to to look forward to in the spring. Our daughter is in the MB area and it gives us a chance to visit along the NC/SC coast. Much easier pace than the NE! I bet the kids are excited.
We are continuing to send positive energy northward to you, Holly. Hopefully the chemo holiday will renew your energy and spirits.
Hi Holly - just wanted to let you know I am thinking of you too. I went through two years of very aggressive chemo at MD Anderson Cancer Center so my heart really goes out to you - hearing what you are going through. It is so hard but I think it truly makes you appreciate every little bit of time when you are feeling better. Best wishes to you and your family.
Quietly following this thread and wanting to send positive thoughts to you. Enjoy your spring break in South Carolina. We lived in the Carolinas for 13 years, and I still miss it sometimes. No place is more beautiful in spring.
Thinking of you and sending positive energy your way. You're handling your situation with such incredible grace and determination. I have a 6 and 9 yr old and really admire the way you've made space for your children despite all that you're going through. Have a lovely holiday!
Best wishes to you 'Holly', and enjoy your break with the kids.
Thanks for posting Holly. I'm glad you are enjoying your kids. I'm another midlife mommy like you.
I am also an RN and I remember when those drugs first came out.
I remember my head nurse telling us that a single dose of the stuff was almost 10K. Sounds like the prices have come down a little ;-)
I know it must take incredible effort to make it to those activities. It takes a lot of strength to still fulfull those mommy roles under such trying circumstances. I'm sure it means a lot to your kids.
Hollybolly, thinking of you...if you happen to see this, please post if you feel inclined...
Holly - big ((((hugs)))! Check in when you can.