Call to arms for a BC friend

Soccermom · 12-12-2008, 08:50 AM

Dear Her2 family,
I have a friend outside of Philadelphia,Pa who is battling CNS mets. She needs help with transportation to and from the Cancer Treatments Centers of America to her home...
this from my friend Caryn..

"
I don't have any children. It's just my husband, our doggie, and me. My DH has to work. He works in a tiny Post Office and it is THAT time of year when they just can't spare him for more than one day a week. Now, it seems that we may be doing chemo twice a week, which would mean I'd need to be in Philly on a schedule that would be like: Monday and then overnight to Tues. AM and then Thursday and then overnight to Friday. In that case, I'd need someone to help get me over to the hotel after treatment and get me settled until I crash. And the next morning, I'd need someone who could drive me home (about a half hour from the hotel).

Then, in January, we are planning to start radiation every week day for between two and four weeks. I'd need to live in the apartments that they provide for patients during the week and would need a caregiver who could stay with me. I think I may have some people who can do that. DH is being deployed for the Air Force temporarily (stateside) for one of those weeks and definitely can't be there then, but as I said, I THINK I might have help for at least one of those weeks. "
Please let me know if you can help or know of help that mioght be available..I already suggested she contact her place of worship..
Caryn has a reservoir in her head that is delivering chemo directly to her spinal fluid (I believe).

Any ideas??????? i WILL BE CHECKING MY EMAIL REMOTELY ALL DAY
Thank for your help!
Marcia

Jackie07 · 12-12-2008, 12:53 PM

Has she checked with the state/local chapter of American Cancer Society? Red Cross? the hospital social worker?

Soccermom · 12-12-2008, 09:10 PM

Thanks Jackie..will have her check it out,
'Marcia

Believe51 · 12-15-2008, 11:21 AM

Marcia, wondering how Caryn is making out??>>Believe51

ElaineM · 12-15-2008, 04:06 PM

I think some American Cancer Society chapters help people with transportation. Call the nearest chapter and see if they help with that.
Some cab companies may give discounts to people receiving treatments.
If health insurance will pay for it there may be transportation companies in the area that provide rides to people receiving medical treatment. You might want to ask someone in the doctor's office for suggestions or ask to talk to a hospital social worker who may have other ideas.
Good luck.
Merry Christmas

Soccermom · 12-15-2008, 06:50 PM

Hi there believe and elaine!
Caryns hanging in there~ but I am waiting for her schedule to be firmed up before I can start making calls for her. She is BRCA + and doesnt have many confirmed options at this point. The port in her head was being ised to deliver chemo directly to her spinal fluid (i think) but it didnt work...so now its off to plan B...fingers crossed...
Marcia

Bill · 12-16-2008, 11:56 AM

God bless her and her husband. I wish I lived closer so that I could help. They'll be in my thoughts and prayers. You're such a good friend, Marcia

Soccermom · 12-16-2008, 04:41 PM

Thanks for your kind words Bill! "There but for the grace of G-d go I"..my philosophy is that if you "operate" on that premise and you can never go wrong. I know that you have walked this walk...hugs to you,Bill.
Marcia

jones7676 · 12-16-2008, 05:14 PM

Where I live (Michigan) there was a group that flew me to a small airport and back near Chicago when I needed a ride. I suspect that she just needs to find a group that specializes in that kind.....I do not live in the area or I probably would be more aware.

Joe · 12-16-2008, 05:38 PM

Try CancerCare. They may offer some help or she may qualify for a $500.00 grant and can take a taxi.

Regards
Joe

Becky · 12-16-2008, 06:45 PM

Where exactly does Caryn live and where does she need to go? I might be able to help but I am not entirely sure. If there are any dates etc. Sounds like she is not that far from me. I am extremely booked but the days may work okay in general.

Soccermom · 12-16-2008, 07:33 PM

Thanks Joe..its not so much the financial aspect but having someone with her.
Becky, as soon as Caryn lets me know what her exact schedule will be I will let you know. Its so sweet of you to offer!!! Perhaps it would be just as easy if I put you two in touch?

Let me know what you think? I am buried right now with my move to Tampa,and working retail hours ...they havent told me whether or not I will have a job to go to in Tampa (transfer) so I am hanging in as long as I can.arghh!
Hugs,Marcia

Soccermom · 12-16-2008, 07:38 PM

Just read this message from Caryn...
I'm so scared. I woke up today with bad pain in both of my hips. I've never had that before. And in addition, I feel twinges in my ribs. I called CTCA and they will be doing a bone scan tomorrow. It seems that everything is going wrong all at once. I'm so scared. How can this be happening to me? "
Caryn
"
Please keep Caryn in your prayers...
Marcia

sassy · 12-16-2008, 08:12 PM

Please tell Karen that we are keeping her in our thoughts and prayers and we empathize with her.

Do try the American Cancer Society, they have several programs that might offer some assistance. CancerCare did help me with financial assistance for travel as well.

Shobha · 12-17-2008, 11:13 AM

My prayers and best wishes for Caryn. May God give her strength to go through this tough journey.

Where I live, there was lot of women in local support groups who offered to drive me back and forth from the hosiptal during chemo.

vickie h · 12-17-2008, 07:34 PM

Sending prayers and love and healing thoughts for Caryn. I know the fear she is feeling, we all do. Please let her know that her sisters are all pushing for her recovery, that she is not alone, that she is very much cared for and loved. I know that most churches have groups that will take her to her appointments and stay with her. Try a U.C.C. church...they are noted for community service like this. Please let us know how she is doing. We'll all be here for her. Love and Hugs to you, Caryn. Vickie

Soccermom · 12-18-2008, 06:30 PM

THX y'all...heres the latest from Caryn...
" Hi all. I'm in a lot of pain from headache now and really knocked out. I'll communicate in more detail tomorrow, but wanted you to know that there is a small area on my hip that MAY or MAY NOT be bone mets, but everywhere else is clean. They'll do an MRI to see what it is, but I can tell you that it's shown up a arthritis every other time they've checked it out.

We ratchet up the chemo starting next week and they are confident that we'll disappear the CNS cells. Then, we also restart systemic chemo and in January add radiation to the mix.

Does that sound like a regimen for someone they think is down for the count?! I'd say NOT!

They also want me to get a hobby that's not breast cancer related so I don't drive myself (and others) crazy. They are right.

I love you all and know that today's outcome was from G-d and your prayers for me.

So much oodles of love,
Caryn "

and this...
"I just wanted to share with you more details about yesterday.

First of all, I wanted to let you know something really special about CTCA. They are closed to outpatients the day after Christmas and day after New Years. My doctors also have prescribed chemo for me on Mondays and Fridays to start this Monday. Do you know that the nurse practitioner who does my CNS chemo, the infusion nurse who accesses my port, the Reiki and acupuncturist are all coming in to facilitate my treatment???!!! I am continually amazed by their commitment there to the patient.

Well, more details:

The bone scan found something on my hip. They are not sure if it's mets or arthritis and will be doing an MRI on Monday to determine. If it is mets, they say it is EARLY and easily taken care of with some radiation and short term of anti bone mets chemo.

The overall plan gets powered up next week. They figured out that the reason that the cancer bounced back last week is because they gave me that week off over Thanksgiving (both Steve and I were not happy about that at the time). OK, so this tells us that the Methotrexate is working; it just needs to be administered at least once a week. OK, so we're going to be doing it twice a week -- as I said above -- Monday and Friday.

In addition, we've decided that we need to add in systemic chemo to make sure that we stay clean in the rest of me. That will be Avastin and Xeloda once every three weeks, starting this Monday. So, on Monday, I'll have chemo in the morning, MRI, Reiki, acupuncture in the mid-day, and then chemo through the head in the late afternoon. Then, I'll be poured to the hotel (OK, I'll probably throw up on the way to the hotel -- sorry for the details, but that's been happening the last few times) where I'll flop into bed and wake up better the next morning in time to come home.

Then, on Friday, I'll return for radiation simulation in the morning, more Reiki, acupuncture, and then CNS chemo in the afternoon. Steve really needs to be at the Post Office on Saturday and so I'm going to give it the ol' college try to make it all the way home on the drive home on Friday night. I'll do my best and try not to paint the curbs.

We'll do that the following week too, but if we can find someone who can help us out in getting me to CTCA and to the hotel that week, we'd be extremely grateful because Steve really needs to be a work at least ONE of those CTCA trips.

After that, in January, I'll be staying at the local apartments at in Philly Monday through Friday as my schedule will be:
Monday AM -- Radiation
Monday mid-day -- systemic chemo (once every 3 weeks, so once or twice during this radiation period)
Monday late afternoon -- CNS chemo
Crash

Tuesday -- Radiation
Wednesday -- Radiation
Thursday -- Radiation
Friday -- Radiation, CNS Chemo, stay over to Saturday; return to NJ

Rinse/repeat for 3-4 weeks.

Then, by February, G-d willing, we'll have cleared the CNS of cancer and we'll have stopped rads and CNS chemo, and I would imagine I would be back to the once a 3 week schedule I was on during suppressant therapy.

So, that's my story and I'm sticking to it!

Much, much love,
Caryn "