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Thursday, August 11, 2016

2 down, 5 more months to go

Several times a week I am offered help and told "just call me". Easier said than done, though greatly appreciated. I've pulled the following directly from a blog post I've shared on Facebook, but I've added a few personal details to make it even easier to answer those questions.

44 Ways to Make the Day of Someone With Cancer
Aug 12, 2014 | Updated Oct 12, 2014
Elana Miller, MD Psychiatrist and writer at Zen Psychiatry

When a person first gets a cancer diagnosis, they’re often so overwhelmed they have no idea how to ask for help or what to ask for — but they sure need it. If you have a friend or family member with cancer you want to help, don’t make the mistake of making a vague, questionably-sincere offer “Well, call me when you need me!” (they won’t).

Instead, make your friend’s life easier by anticipating his or her needs and giving tangible, much-needed support. Here is a list of the top favors people did for me that made my day (and made my life much easier!) after my cancer diagnosis.

1. Deliver a meal. Make sure to ask in advance if they have any dietary restrictions or are following any guidelines. Stay for a visit, or just drop off the food if they’re not up for it (a cooler left outside the front door is perfect for this). We have this all set up here: http://www.takethemameal.com/meals.php?t=DCSS0960. Another thought, especially on days I'm feeling well, join us for dinner or invite us over. We dearly miss the fellowship!

2. Deliver a Tupperware of several pre-made meals your friend can heat up as needed. Use Tupperware you don’t need returned. We were given a freezer just for this purpose❤

3. Send a quick email, text, or message saying you’re thinking of them. I love these, they keep me going! My email address is tikaweeks@gmail.com. Text me at (541)778-7215.

4. Add “No need to respond” to the end of your message — they’ll appreciate hearing from you without feeling the need to do anything in return.

5. Add “Feel free to take me up on this offer whenever” when you offer help — they’ll know the offer will still be sincere whenever they need it (in a week, a month, a year).

6. Set a calendar alert reminding you to check in with a quick hello or offer of help on a regular basis.

7. Send a text the next time you’re at the grocery store and ask if they’d like you to pick anything up. This is huge even when it's just one item! Text me at (541)778-7215.

8. Send a text the next time you’re at the drugstore to see if they need any toiletries. Text me at (541)778-7215.

9. Send a housekeeper to clean up their place. Take care of the details so they just need to be there to open the door. This would be a godsend.

10. Send a text the next time you’re at the pharmacy to see if they need any prescriptions picked up. My pharmacy is at Target CVS. Text me at (541)778-7215.

11. Send a mobile masseuse for a gift massage.

12. Offer to take them out for a coffee or lunch date. These are my favorite, but I also have a friend who moved 2500 miles away and every couple of weeks she has a "coffee date" with me in the form of a $5 donation. She doesn't even like coffee, but her sweet gesture speaks volumes to my heart.

13. Offer to visit. Check that they’re feeling up for it.

14. Offer to take them out to a movie. If they’re too tired, come by with a rental.

15. Offer a ride to chemo and keep them company during the treatment. Even better, commit to giving a ride on a regular basis throughout their treatments. Even a quick 15 minute visit while I'm sitting there for 4 hours would be welcome.

16. Let them know you’re “on call” for emergencies. Mean it. Those that have made themselves available for this are on a special contact list for my family.

17. Send a flower delivery. However, make sure the person isn’t on neutropenic precautions first; fresh flowers can be an infection risk for cancer patients with weakened immune systems. Sadly, I had to give away the many wonderful flower deliveries I got right after my diagnosis. Or, consider silk flowers (no worries about causing infection, and they last longer). I am on neutropenic precautions so I can't have cut fresh flowers in my home (we have them on a shelf outside my front door) but several pretty potted plants have made it into the ground in my backyard for extended beautification. ❤

18. Order take-out and have it delivered. Ask if they have a favorite restaurant. If they seem too overwhelmed to make any decisions, just get a sense of their dietary preferences and pick out a nice meal to send. You'll find this info on our meal page: http://www.takethemameal.com/meals.php?t=DCSS0960

19. Gift a magazine or newspaper subscription.

20. Gift a good book.

21. Tell them you love and care about them. Even if they don’t have the energy to respond, your message means a lot.

22. For your lady cancer friend, take her out to a nice beauty treatment. Think: manicure/pedicure, facial, makeup application, etc. It may be the first time she’s splurged on her appearance in a while.

23. Send a card. Make sure it’s legible — cancer eyes are tired eyes :-) I love these, they're like getting hugs in the mail! My mailing address is 1119 Dakota Ave, Medford, OR 97501.

24. Gift an Uber or Lyft gift certificate if you’re not available to offer a ride. I’m a huge fan of Uber.

25. If you’re a close friend or family member to the cancer patient, offer to be a “point person” where you screen and accept/decline others’ visit and help offers. Right after a diagnosis there are many who want to help and visit and call, but the person with cancer is probably extremely overwhelmed at this time and may prefer some space. If you're not sure by now if you are a close friend or family member, let's talk❤

26. Understand that a cancer patient is likely too overwhelmed to ask what they need; take the initiative by offering specifics, instead of saying, “Let me know if there’s anything I can do for you.” We've found this to be true more often than not. We appreciate the offers but don't always have an immediate need in mind.

27. Remember to still be there a few months after the diagnosis, when it’s not so new anymore. The fanfare will have died down, but your friend will still be struggling and needing logistical and emotional help. My cancer diagnosis came in early May, surgery followed soon after in June. By July when I started chemo, this was already happening. I won't be done with chemo til after Thanksgiving.

28. Offer to be the “communication person” that updates others about your friend’s state of health; it can get difficult to have to share the details over and over.

29. On that note, when you check in, don’t always ask for all the details about the current state of your friend’s health. I would love to know what's going in your life too ❤

30. Does your friend have a dog? Offer to come by and take them for a walk or to the groomers.

31. Does your friend have kids? Offer to babysit, do a school pick-up, or have them over for a sleepover.

32. Say, “Give me a task.” Maybe it will be laundry, or an errand, or picking up groceries. Be in and out. No socializing needed. My sister helped me start a list of tasks that have no sense of urgency, but are specifically for those that offer and ate still a huge help.

33. Does your friend have a garden? Offer to come by and do some watering and care. Even better, commit to taking over the watering regularly. Not this year 😢

34. Text or email a silly joke or photo. Humor is so important. My email address is tikaweeks@gmail.com. Text me at (541)778-7215.

35. Offer to help your friend sift through and respond to emails; after a cancer diagnosis the number of emails can be overwhelming and important ones can get lost in the shuffle.

36. Offer to create and manage a schedule for the person: for meal deliveries, rides to chemo, visits from friends, etc. Websites like takethemameal.com and lotsahelpinghands.com can help.

37. If you can, and your friend feels comfortable accepting it, give some cash — between hospital bills and the loss of income if one can’t work, cancer can be a huge financial hit. This is huge even when it's just a $5 donation. We've set up a account with no fees to you or me at www.paypal.me/twcancerfight. This deposits into our special medical fund account at our bank where we can also deposit cash and checks.

38. Donate money to cover paid-time-off hours for the patient or close family members (some employers allow this).

39. Buy a monthly parking pass for family members when the patient has a prolonged hospitalization — hospital parking gets expensive!

40. Gift a hat, wig, or scarf if your friend will lose her hair with treatment. ❤

41. Gift a super comfy blanket. This was one of my favorite and most-used gifts (good for couch lounging or trips to chemo).❤

42. Just listen. Don’t give advice, don’t try to be cheery — just listen and let your buddy talk.❤

43. Ask what they need from you most right now... and then do it.❤

44. Cancer isn’t contagious — give your friend a hug to let them know you’re on their side.❤ I even bought a wig and a couple head coverings for those of you uncomfortable or speechless around my extreme baldness 😉 For those that aren't, I'm entertained by those that want to touch my bald head. I've never been bald before either!

Wednesday, August 10, 2016

Round 3

Here we go again. All hooked up and settled in for today. I've got my mom here with me this time❤

Lots of weird side effects the last few weeks, plus a struggle emotionally. Thanks to those of you that have been praying for me.

If you missed the good news, we found out last week that my dad got his pathology report and he is CANCER FREE.  Thank you, Lord!!

I also got to work last Monday. Oh joy!! I've missed teaching my painting parties and it was good for me to get out to do it. I'm hopeful to be able to do more in the near future.

Friday, July 29, 2016

My Hair

My hair. It's always had a mind of its own.

It started falling out earlier this week. My scalp had been feeling weird. 

"Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows."

Luke 12:7 

Jesus said that. Maybe he was hinting of my nest? 😉

Tuesday I took a shower in the morning and again that night. My hair clogged the drain both times. Wednesday morning, another shower before chemo, same thing. So much hair. That night I was so tired and just achy after chemo, I just wanted a shower and my bed. As I stuck my head under the water, I let my hair get wet and added shampoo. And more hair stated falling out tangled together in huge matted dreadlock looking things. I called for Charlie to bring me my comb. I slathered in conditioner and gently tried to work through the tangles. It just got worse and more clumps just added to it. This is it.I had already talked to my boys about when it was time to shave my head. They've had me cutting their hair their whole lives. It was their turn to buzz mine. Nathan had a hard time with it and decided not to. Ryan took over and cut that nasty dead rat looking thing off my head. It made for a nice moustache. And a goatee. We had fun with it.Edward Scissorhands does my hair!!

It hurt to cut my hair. Like physically HURT. But he started by shaving the side. I had to capture that punk rock snarl for old time's sake 😉 
So why not shave the other side and have a mullet? 😂 
Now let's end that party in the back and we can have matching haircuts! Just what every 16 year old young man wants, right? 😁 Twinning with mama. 
Now shave straight through the middle...
...so you can wear a pretty little bow one last time. 🎀
Now let's finish it. Mom's tired and every follicle on my head hurts. 
Ta da!!
No one tells you what it feels like when chemo makes your hair fall out. It happened so fast! Mine is still falling out in clumps but it's less messy since it's shorter. I expect there won't be anything left on my head soon. 

I'm glad to discover that my head is nice and round. My head feels naked and I need a hat that doesn't make me feel like a man. Cancer has taken my breasts and my hair but it will NOT take my joy. That belongs to the Lord, my Creator, my Rock. 

"I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well."
Psalms 139:14
 

Tuesday, July 26, 2016

Round 2

Here we go again. 

Wednesday morning I will go in for my second round of chemo. I'm hoping that this time goes as well as the last time. I'm trying to remember that last time I went in there "new" and having never done this before. Now at least I know what to expect. I'm bringing more ice water and tea. I'm bringing more to do. As of this evening I'm fasting again. Whatever it takes, right?

Earlier today I went to the sauna again. If my doctor had her way I'd be there 5 or 6 times a week, but once will have to do. I actually enjoyed it today, heat and all. I noticed something I missed the last time. My sweat didn't sting my skin like it used to. I think that's called healing. For years my body acted like it was allergic to my own sweat. This time it felt cleansing. I'm completely drenched in this pic. 

I mentioned I'm bringing something to do for chemo tomorrow. A quick trip to Goodwill this weekend and $6 later I have the makings of my own portable art studio. Drawing, painting, hand lettering, coloring. This will keep me busy for all the hours I'll be there this year. 
I was told recently that I "paint a pretty picture" and the question was asked if things are really going as well as I've shared here. Yes, things are going well. Yes, I'm hopeful and feeling great (at the moment). But the are also times that aren't so sunny. I don't share much of that because it's depressing to focus on the negative stuff. I've shared my loneliness and how I feel isolated. What more can I say? I had to ask for visitors during chemo tomorrow so I'm not sitting there alone all day. Thankfully I have a ride there and another visitor to come. I've had a hundred people tell me to call them if I need anything. I'll be honest, I'm not likely to call. Instead, read this and see if this helps:  http://m.huffpost.com/us/entry/5660514.html

My funds for my care outside of the doctor's office, those uncovered by my insurance but recommended for my healing, are running low. I have 5 more months of chemo to go and then reconstruction. I have no energy to plan a fundraiser for myself and don't feel right doing it. It's hard enough asking for donations, but here I am. Asking anyway. https://www.paypal.me/TWCancerFight

And my hair started falling out today. I didn't know it would come out in huge fistfuls. I didn't know it would make me so emotional. But it did. And I sobbed in the shower as it clogged the drain. 

All these things are stressful to my family and my marriage. We welcome your prayers. 

So that's my complete picture, the good, the bad, and the ugly. It's a lot more fun to tell you how great I'm doing. 

Thursday, July 21, 2016

Finding Joy in the Journey

Yesterday marked a week since my first chemo infusion. I had lab work done in the morning and met with my oncologist. She said my blood counts looked "phenomenal" and she anticipates that I will weather chemo quite well. I kinda have to agree with her. After all, that's why I'm doing all this work at home- juicing, exercising, complementary and alternative therapies.

The first 4 days were the hardest, but even they weren't too bad. My nose was super sensitive to every smell, while my taste buds were numb (like I'd scalded my mouth). This combo led to little appetite, nothing sounded good. My nausea was pretty mild, more like heartburn, but made it difficult to find anything "good" to eat or drink. I didn't juice on those days. I couldn't handle the smell of the vegetables. Especially celery. 😉 Back to normal now and that brings me great joy!

The day after my chemo infusion I received an injection of Neulasta, to fight neutropenia. It's to help boost my white blood cell count so I can fight infection. Since white blood cells are made in the bone marrow, and this is now being simulated, this causes bone pain. For 3 days after my injection, I would have flashes of pain, especially through my spine and upper back. While the pain would stop me in my tracks, I was able to breathe slowly through it and it would pass. Again, no pain meds. Thank you, Lord!

My goal for the week was to be in church on Sunday. I was there with my family and praising the Lord for all the blessings that the week brought, all that was mercifully spared, and praying that the chemo was working even as he was healing my body. Hallelujah!!

Monday I felt good but I was getting restless. Charlie and I made a spontaneous decision to drop in on our local ballroom dancing classes. I figured it was safe to see how I'd do. I'm so glad we went. We aren't getting much alone time right now so it made for a nice date night. 💜 And I was fine. I actually think it was great exercise for my still-healing right arm. I'm still praying for those damaged nerves to heal completely. Meanwhile, I got to dance with my beloved. And whenever we dance there's always laughter. 😆 And laughter is good for the soul. 

By the way, my dad's surgery went well. He's up and moving and ready to go home as soon as he can. Thank you all for praying!

Tuesday I went to an infrared sauna as part of my recommended care. I don't like hot and I get claustrophobic, so I was a little concerned about 40 minutes in 130° in a tiny room. And sweat I did. I felt like every cell in my body was weeping. Take that cancer!! 😅 I'm hoping to be able to do this at least once a week.

So that's it. I go back in next week for my next infusion. I'm slowly starting to add regular activities back in as I'm able. I spend way too much time in doctor's offices with sick and frail people, but knowing that God has me there for a reason. I'm struggling with feelings of isolation and loneliness. I had reason to celebrate last night and no one available to join me. Feeling raw. If you're healthy and have the time, call me. I told a friend the other day, "I'm still me." I happen to have this cancer battle taking up a lot of my time right now,  but there's so much LIFE still going on. I still like coffee and time with friends. I like to read and paint and get outside and watch my kids thrive.

So, for those that have been asking how I'm doing, that's as real as it gets. I'm on this journey to heal and I'm trying to find joy along the way.

Friday, July 15, 2016

After Round 1

It's been 2 days now since Chemo Round 1 got its first punch in. I didn't feel it till about 6 pm and it lasted till I went to bed. I took my antinausea meds (one of the 5 they prescribed me) around 9 pm because the feeling wasn't passing on its own. I am thankful for the fast my integrative oncologist had me on. Clear fluids only for 36 hours equals no vomiting and mild nausea. I was wide awake at 3 am though, might have been the meds wearing off, and after an hour and a half I was able to go back to sleep. I woke up rested, no nausea, and only slightly hungry for my first post chemo meal. Praise the Lord. He gets ALL the glory.

I promptly went on with my day, intending to just playing it by ear. I went to the doctor for my neulasta injection. I've been warning this one will kill off my white blood cells. (More on that later.) Took my sister to the airport to see her off. About 2 pm, the nausea returned. Still very mild, but just enough to make me cautious. I took my meds again just before dinner, a different one this time. I don't think they're really helping but at least the feeling isn't overwhelming. Just taking it easy.

Today's Friday now and I'm taking my son Ryan to the DMV for his driving test. Say a little prayer for him that he passes. It'll be a huge help to me to have him driving independently. I know he's ready, but he's a bit nervous this morning.

As for me, please pray that the nausea I'm experiencing either goes away or stays this mild. Also, today I woke up aching all over. The neulasta injection causes bone pain and I'm feeling it. This looks like it will shape up to be a low key day. Good thing I'm taking this day by day...or even hour by hour. Minute by minute works too 💕

Many thanks,
Tika

Tuesday, July 12, 2016

Wednesday, July 13, 2016

Tomorrow: chemo

I've spent the last few days getting ready for chemo. Tests, results, appointments, errands, prayer.

Thanks to those of you that sent me a "cup of coffee", flowers, notes, and texts this week. Thanks also to those that have brought meals and given rides to me and my boys. So many blessings...

There's been lots of curiosity expressed for my treatment plan. Many of you know I'm seeing an integrative oncologist. She's AMAZING and creating a customized plan for me, for my specific cancer, and with my tendency towards natural, holistic healing in mind.  She has been responsible for running tests my other doctors won't ask for and will continue to advise me through chemo. I will also be seeing a naturopath later this month.

Under my integrative oncologist's advisement, I will be fasting through my chemo infusions. (Up til now, I've been intermittently fasting 12-14 hours between dinner and my next meal.) Today, I had a filling breakfast, high in protein and healthy fats and satisfying. Lunch was my usually veggie juice (minus supplements today). Dinner was a small plate of lettuce and blueberries. The idea is that my body (and my cells, both healthy and cancerous) will be expecting a big breakfast again tomorrow. Instead, it will get a dose of chemotherapy to feast on. This fast should also help with my nausea. I'm hopeful that the side effects will be minimal, but only time will tell.

Up till now, I've also been directed to get a minimum of 20-30 minutes in the sunshine, taking in that vitamin d, exposing as much skin as I'm comfortable with in my own back yard 😉 That'll change now. Some of the drugs I'll be on will make me sensitive to the sun. I'll still be spending time outdoors, only now it'll be in the shade.

Please pray for my family. It's been a joy to have my sister here this week helping us prepare, but the truth is there's only so much we can really do. We still have to walk through this valley. I still have cancer. There's still a battle to fight. I'm clinging to the Lord and praying for his peace.

Chemo starts tomorrow morning. Time for some sleep.