Jill's Journey

[Jill2008]

Hi everyone!
My journey is about to begin. I had a echocardiogram, pulmonary function test and another bone marrow biopsy last week. Just waiting to hear if my transplant has been approved by our insurance and I am told they are quick. Next week I return for radiation planning, EKG, chest x-ray and CT scan, central venous catheter training, and a consent meeting. I will begin total body irradiation on May 4th for four consecutive days, chemo (cytoxan) on May 8th and 9th, and then my donor's stem cells with be infused on May 11th. I have been busy getting everything in order at home, since my husband and I will be living four hours from home. Thankfully we have two grown daughters to take over the care of their 15-year-old sister. We have Skype to stay connected and they will travel down to the bay area to visit often. I will try to update as much as possible. I also have a Care Pages site jillsjourneyt2acure.
Jill

[squirrellypoo]

Oh that's all very exciting, Jill! You mention the catheter training - are you getting it inserted next week, too? I must say, I loved both lines I had- they meant I didn't have to get stuck with needles anymore, and so many IVs had to be hooked up in the early morning or late at night, so it didn't matter if I was half asleep...

Also, I hate to tempt fate, but do you know where your donor is located? (I'm just thinking about all the problems the UK patients are having right now with the flights stopped)

Is your husband staying with friends, or is he going to be in a hotel while you're an inpatient? I found that having a good wifi connection, lots of dvds, and lots of crafts to keep me busy were really helpful in preventing too much boredom and the stir-crazies.

[Laura]

GOod luck with everything Jill! Keep us updated on how things go. Wish you the best with everything. I agree with Melissa. Lines are the best! However, it was painful after being first put in so make sure you get some pain meds too.

Laura

[Jill2008]

Melissa and Laura,
Thanks you both for your advice. I will have the Hickman catheter placed the day before I begin TBI. We have to travel four hours to Stanford, so my case manager has tried to make appts. as convenient as possible for us. I will most likely find out what information I can on my donor Monday. I haven't been told yet that there any delays in my treatment. I will have my laptop with me, as well as movies and tv shows on DVD, my Ipod and scrapbooking materials. I know there is a list on this site of recommended items to bring. I think I am pretty well prepared, but thought there might be a few suggestions that I didn't think of.
We have rented a nice furnished apartment just 8 miles from the hospital and then once my ITA appointments can be spaced out enough I will move to my parents home 30 minutes away. Getting nervous!
Thanks for joining me in my journey!
Jill
To Neil or Ruth-Is there any way to change the title of my thread to Jill's Journey? (missed a letter) oops!

[Neil Cuadra]

Originally Posted by Jill2008

I know there is a list on this site of recommended items to bring. I think I am pretty well prepared, but thought there might be a few suggestions that I didn't think of.

There's a discussion of what to bring to the hospital in squirrellypoo's thread and I'm sure you'll run into other suggestions too.

One patient recommended hard candy or gum to deal with bad odors/tastes. Other patients have mentioned bringing family photos and a notebook to keep track of everything -- instructions and pamphlets and paperwork the hospital gives you, plus anything you want to scribble down. You said you got a big transplant binder. We had the same thing so we added more tab dividers and blank paper and used it for recordkeeping. Your computer would work for note-taking too, as long as you keep it charged up. Ideally, your family can be couriers for whatever you discover you need or don't need as you go.

You might ask the hospital about security, since you don't want your computer or other valuables to walk off, and you can't watch your stuff when you're asleep and your husband isn't in the room. Maybe they have a recommendation other than "don't bring anything of value."

The most important thing to have with you during a transplant is your caregiver. I'm glad your husband will be there. Depending on circumstances (jobs, family responsibilities, logistics, etc.) some patients can't have a caregiver with them and it's hard to stay sharp and keep track of things when you're the patient, sleeping a lot, on medication, and/or feeing lousy. Hooray for spouses!

To Neil or Ruth-Is there any way to change the title of my thread to Jill's Journey? (missed a letter) oops!

Yes. It's the least we can do!

[Jill2008]

Thanks Neil!
I just found out my transplant has been approved! Thank you for the link to the list of items and for your suggestions. Just have to pick up a few things and I'm ready. I am allowed to bring posters for my room so I am creating 20 x 30 photo collages through Costco.
I don't know what I would do without my husband. He has read the entire transplant manual at least twice. My nurse coordinator and social worker both asked him if he could teach a class to the other caregivers. Ha Ha! Our three daughters will all be together and they plan to come see me on Mother's Day. My parents live in the Bay Area, so I'm sure they will also be visiting often.
The only thing I'm kind of sad about is that I started up a Relay For Life team last year and now my husband and I will not be able to attend the event. Both sides of our families will be there too as well as many friends. I hope that next year I will be able to attend as a survivor!
Jill

[squirrellypoo]

A couple things I appreciated:

* chapstick (my lips got really dry)
* tanktops with built-in shelf bra for sleeping (I would tuck my hickman line inside my bra when not in use during the day, but at night it would get caught up and pull a bit if it wasn't contained)
* button-down shirts (so you can change in and out without having to disconnect the hickman line)
* slippers with a firm sole (in case of sharps)
* Juice-boxes of Hershey's chocolate milk (my room had a fridge and since these were sealed and UHT, they were approved for my neutropenia. A true taste of my childhood when I needed comfort. You can't usually get Hershey's in the UK, and these tasted SO good even when my tastes were really out of whack)
* silk/artificial flowers really cheer up a room when you can't have the real thing
* nice smelling shampoo (because my hair didn't fall out until 3 weeks after the first chemo dose!)

Photo collages are a great idea! I found them really nice to look at, and gave the nurses something to talk about when they came in! And if you need to move rooms, it's a lot easier to move one poster than a bunch of individual photos....

Oh, and my mom is big into Relay for Life! I'll get her to do an extra few laps for you this year, okay?

[Neil Cuadra]

Speaking of collages, here's a small tip for anyone going to transplant:

Find out ahead of time how people should address mail to you, then let your extended family and friends know. Just putting your name and the treatment center's main address may not be right.

Encourage them to send you picture postcards. They're cheap and don't require people to write a lot, but it'll be a bit of sunshine anytime one arrives. It doesn't even matter what they are a picture of. My wife got a bunch of them from family members and filled up one part of a bulletin board. You can even tape them together after you read them and make a collage that keeps growing.

[squirrellypoo]

Feel free to tell me I'm being overly paranoid here, but when friends and family sent me get well soon cards in the post, I didn't even touch the envelopes for fear of not knowing if a postal worker coughed and touched them - my mom opened up all the envelopes for me and I pulled out the card from inside. So I would've felt weird and vulnerable handling a postcard that could've been through countless germy hands (and for the same reason, I never handled money when I was neutropenic in hospital).

[Laura]

Melissa, I don't think you are being over cautious. I don't believe you can be too cautious or too paranoid when it comes to protecting yourself and transplant. I still to this day have a hard time doing things that seem germy to me but to the "real world" it really isn't a big deal at all. Will we ever be able to get over those "fears" of germs and such? What kind of precautions do your doctors tell you to still follow and what do you still follow? Sometimes I wonder if doing things is okay now or not.

Laura

[Laura]

Hey Jill,

I can't seem to get your page to load on carepages. Is jillsjourneytoacure the right thing use?

I would like to keep updated on your progress.

Laura

[Jill2008]

Hi everyone!
I was told by a few transplant survivors to be flexible because dates change and are often postponed for a variety of reasons. Please tell me why mine is now ahead of schedule? I will not be receiving TBI as planned, only chemo! We leave for Stanford at 5am Monday morning. I have catheter placement at 11am and will be admitted at 4pm that afternoon. They want to begin chemo early on Tuesday with 16 doses of Busulfan over a period of four days. I shouldn't experience any side effects with this drug, but it does have a slight risk of causing seizures. They will put me on an anti-seizure medication to minimize this risk. Following Busulfan, I will be given two days of Cytoxan. This has multiple side effects but I will be given medications to help reduce them. My doctor is confident that by using this combination of drugs we can obtain the same result (detstroying my immune system and the MDS completely) with less toxic damage to by body. My donor is an international, a 47-year-old male. I'm thinking he is possibly from Europe, due to the fact I have heritage there. My grandparents came over to America from England. His stem cells will be flown to the US and delivered to Stanford by courier. This whole process just amazes me.
Thanks for all the advice everyone! Laura, my carepages site is jillsjourney2acure. Sorry for the misprint. I have corrected it in my earlier post. Got to go! So much to do in three days!!!
Sincerely,
Jill

[Neil Cuadra]

I'd guess that the rush to get started was based on your donor's availability. Maybe you'll find out the details from him a year from now!

Best of luck, Jill!

[Laura]

Good luck Jill. Keep us posted. I wonder if the donor asked to push it up and that is why you are going early?

Laura

[Julianna]

Thinking of you Jill! Hope all goes well. And safe travels so early in the morning! Love to know how it all goes...

Jules

[Jill2008]

Thanks everyone! I think I am about ready to go. Have to be packed today so that I can attend my daughter's volleyball tournament tomorrow.
Just a quick question...how sanitary does everything I take into my room in the Blood & Marrow Transplant Unit need to be? Do I need to wipe my cell phone, laptop, I-pod, etc. down carefully with lysol wipes? I am probably being overly cautious. My husband says I'm a germaphobic. Just curious what precautions I need to take.
Thanks!
Jill

[squirrellypoo]

Originally Posted by Jill

Do I need to wipe my cell phone, laptop, I-pod, etc. down carefully with lysol wipes?

It's a good idea to do that, and/or bring the wipes along so you can do it every few days there. In my transplant ward, they covered all the tv remotes in plastic wrap (saran wrap, cling film, etc) so they could easily wipe them down when they cleaned the rooms and germs didn't get stuck in the little keys.

So no, you're not being paranoid!

[Shirl]

I just joined the forum. Thank you for providing honest discussions. I am a 7+ year mini stem cell transplant survivor. I was diagnosed in 2000 with MDS and was the first MDS patient in a mini stem cell transplant clinical trial with pre-treatments of azacitidine (now Vidasa). If you feel that my journey may help you, please visit my website at http://shirley.bulloch.org. My prayers to Jill and all others that are taking this journey. We need a stem cell transplant survivor's club.

[squirrellypoo]

Originally Posted by Shirl

We need a stem cell transplant survivor's club.

Or a little badge to wear on our jackets so we can acknowledge other survivors on the street! Though having a secret handshake is a step too far.

Thanks for joining us, Shirl. It's great to see long-time survivors to balance out the far too many dear friends among us that don't make it.

[Shirl]

We need to think about the badge. I agree handshakes are going too far. I don't do hands, lightswitches or doorknobs. Now I am making greeting cards for those in the hospital for stem cell transplants. I remember 7 years ago how much I looked forward to the daily cards and letters. It sounds like you are doing quite well. Thank you for accepting me.

[Jill2008]

Hi Everyone! You are probably wondering what has been happening.
On Monday we arrived at Stanford for my catheter placement in the outpatient surgery center. Other than a mild reaction to the platelet transfusion I received, everything went smoothly with the procedure and I felt very little pain. Following a short post-op recovery, I was admitted to the BMT Unit.
I received the first dose of chemo on Tuesday morning without any side effects. After the doctors morning rounds, however, the BMT team decided to postpone my remaining chemo and transplant. I had developed a severe sinus headache/migraine following allergy symptoms I experienced last week. They had to rule out the possibility of a respiratory virus which could cause me to develop an infection with no immune system to fight it off. Better to be safe than sorry I guess. I have an appointment for labs tomorrow morning and at that time they will re-evaluate. In the meantime, I have to avoid contact with people and other than when I am in the apartment or car, wear a hepa mask. I was also told to take Claritin-D.
I found out yesterday that the virus testing came back negative.
Will try to post an update as soon as possible.
Jill

[Shirl]

Jill, I am so very pleased with your response. Without a virus, will the chemo continue?

[Jill2008]

I have an appointment with my transplant doctor tomorrow and will be admitted on Monday afternoon, 5/17 to start this journey over again. Chemo will resume on Tuesday morning. This setback has been the worst thing that could have happened. At least when I was at home I was busy and didn't have much time to think about what's ahead. Now I have nothing but time. My husband is hesitant to let me go outside due to the allergy attack that posponed the transplant in the first place. I am going crazy! I think I finally have him talked into letting me go to the gym in our apartment building so that I can at least walk on the treadmill. Hopefully, my next post be from the BMT Unit. Thank you to everyone for your support!

[Laura]

Have a great last weekend before transplant. Good luck with everything.

Laura

[squirrellypoo]

That's really good for you to keep moving and get on the treadmill! I can totally sympathise with that useless feeling after building up to the transplant - mine was pushed back by a month, the night before I was to be admitted.

Have a great weekend and do all those little things around the house that you enjoy most.