Tuesday, August 28, 2012

Masks off :)

Madeleine’s Blog

August 28, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10



It is so nice to be home! We drove home Sunday, and because of Madeleine's low white counts, we all got to experience wearing surgical masks (to keep her protected from germs). When we were out in public (at the hotel or stopping to get something to eat), the best way to protect Madeleine was for her to be the one to wear a mask. It was quite an interesting experience to watch people take a second look and then try to avoid her! When we were alone with her in the car or hotel room, then we would be the ones to wear the masks so that she could be able to enjoy breathing freely since it isn't very comfortable breathing stuffy air inside a mask. 

Let's just say that we all breathed a sigh of relief when her Monday morning blood tests showed that her white counts were already good again! So...off with the masks, and on to enjoying her family, friends, and pets (the pets hadn't been cooperating too well with the mask-wearing rule...). She still has to avoid being around anyone who is sick, but being able to relax a little really helps.

Now Madeleine will just be working on recovering, and then her next PET scan is scheduled for September 7th. The outcome of that scan will determine what she does from here (more of the same treatment? a different treatment? a break from treatment?). So, we would really appreciate your continued prayers that this treatment would really be effective on her cancer, and that she would continue to gain strength as she recovers from this latest round of treatment.

Sunday, August 26, 2012

Bio-chemo: Orchids & Onions

Madeleine’s Blog

August 26, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10


As we finish up this fourth session and head back to Santa Rosa, I'd like to give you a little window into some of the ups & downs that Madeleine has faced during her Bio-chemo treatment. She has been amazing in her ability to put up with the challenges, even though it has been quite difficult at times. Here are some of the things she has been experiencing (in an "orchids" and "onions" format):

Onions to... daily 4 am wake-up calls for mandatory blood draws and weight checks, as well as nightly monitoring - every two hours. Yawn :)
Orchids to... our favorite night nurses - who carefully tip-toe, use a flashlight, and try to efficiently organize their visits in order to bring the least interruption of your sleep!

Onions to... trying to swallow pills, food, and even water while struggling to endure the suddenly-strange, chemo-induced taste that they have.
Orchids to... I.V. Zofran and the near-instantaneous relief from nausea it brings! 

Comfy chair-bed 
Onions to... the hardness of fold-out "chair beds" used for family members to stay overnight in a patient's room (really nice to have, but not very comfortable).
Orchids to... the same chair bed with an egg-crate cushion added for comfort - what a difference that made (and thanks for the gift, Nancy)!

Onions to... the all-too-frequent alarms blaring from the IV-pump machine in our room ("Warning: Air in the line!").
Orchids to... the soft sound of a lullaby played over the hall loudspeaker every time a baby is born in this hospital -  a definite reason to smile!

Onions to… the strange, constant “buzzing and chirping” sounds coming from the pagers in the pockets of the RN’s as they tend to you.
Orchids to… finally coming to learn that those noises help the nurses be able to constantly monitor the heart rate & rhythm of their patients (including you!).

Kaiser "luggage carts"
Onions to… having to make several trips down to the car to lug everything needed for a week’s stay for two (clothes, bedding, computers, snacks, etc.) up to the hospital room.
Orchids to… discovering that one of the ever-present Kaiser hospital courtesy wheelchairs can also double as a great luggage cart! 

hand sanitizer dispenser
Onions to… the low blood counts that can sometimes come from chemotherapy (chemo attacks rapidly dividing cells, which is great when the cell is cancer--but not so great when it is your blood cells), and the resulting need to wear masks when that happens.
Orchids to… convenient hand sanitizer fixtures located inside & outside each room - with their magically-evaporating foamy hand wash; and for Neulasta, the shot they give you on the last day of treatment that helps bring your white cell count back up (and helps you fight infection).

And finally, an extra-large Orchid to... the doctors and nurses who have made sacrifices and dedicated their lives to helping us fight cancer. We are so thankful for their care and expertise. This is not an easy battle, and so we are really glad to have them fighting on our behalf.

Friday, August 24, 2012

Slight adjustment

Madeleine’s Blog

August 24, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10

Bio-chemo treatment isn't easy on you by any means! It does take a physical and emotional toll as you struggle to maintain & overcome while under the influence of several harsh medications. Madeleine has been fighting hard and has done very well, but this afternoon as her blood counts (and her spirits) were getting low, Dr. Gailani made the decision to taper things off early. He felt that she had finished the main chemo drugs for the week, and that she would be better off if he made that adjustment.

By this evening, Madeleine was back in good spirits, eating and drinking again, laughing, and up walking. It was like a load had been lifted off her shoulders. She will stay in the hospital until tomorrow (so they can monitor her counts) and then will come home on Sunday.

Update: This morning (8/25), Madeleine's blood test shows that she is "neutropenic" (low white cell count), so we are wearing masks and washing our hands while in the room with her. This is not unexpected and is a temporary result of the chemo. Thanks for keeping her in your prayers.

Tuesday, August 21, 2012

Riverside - biochemo round 4 begins

Madeleine’s Blog 

August 21, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10


We're back at the hospital in Riverside for round 4. As you can tell from the adjacent picture (where Madeleine & her mom are sharing a hospital bed while she waits to be taken down for her central line surgery), Madeleine is not too excited to be back doing this again! But she has a good sense of humor - in fact, she got me laughing so hard while I was trying to take this picture that one of my shots was just of her legs! But seriously, coming back for chemo takes a lot of internal strength and courage. We laugh, but we also pray together for the strength to face the challenges that we know are ahead this week. And you won't see us posting pictures of those days - they are full of endurance, facing fears, and counting the days until she is back home again.

Madeleine with a stuffed animal gift from Dr. Gailani
Each visit also has its own set of encouragements. Yesterday,
shortly after we checked into our hospital room, a man and woman came over to greet us. They explained that their 33-year-old daughter was in a room down the hall and was also battling melanoma and was there for her first round of bio-chemo. They also explained that they had come to know of us through somehow stumbling upon Madeleine's blog on the internet, and that the blog had really helped and encouraged them as they were facing her diagnosis and considering doing bio-chemo. They invited Madeleine over to their daughter's room, and Madeleine was able to encourage her as they compared experiences and talked about the treatment. It is really amazing to realize that the things that Madeleine has gone through, and the encouragement she has found along the way, might also be an encouragement to others.

Thanks again to everyone for your prayers for Madeleine - we are praying that this treatment would be effective and that she would have courage and grace as she goes through this week.

Sunday, August 12, 2012

Happy birthday, Mom

Madeleine’s Blog 

August 12, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10


Deanne & Madeleine
Today is Deanne's birthday (Madeleine's mom). In honor of her birthday, Madeleine posted these pictures & comments on Facebook this morning:

Happy birthday mom ♥ Thanks for everything you've done for me, and I mean EVERYTHING. I can't thank you enough for sleeping on that "sofa-bed" every night in the hospital during my treatments. I look up to you so much and admire your strength and your love. I can't ever repay you for the things you do for me. I'll always be your little girl. 

With all my love,

Sissy

 ~~~~~~~~~~~~~~~~~~~~~~~

And on August 10th, Madeleine posted this on Facebook in response to a special gift from her dad:

A special gift
Today my dad gave me his college graduation ring. He told me he wanted me to keep it until I'm all better from chemo. This ring means so much to him and he wears it more than his wedding ring. Even though my dad can't be in Riverside to help me through I know every time I feel like giving up in chemo this will remind me to keep fighting. I love you daddy. ♥ 


Thursday, August 9, 2012

Our "biochemo" treatment routine

Madeleine’s Blog 

August 9, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10

Hampton Inn & Suites - Riverside
We are home again! This was our third trip down to Riverside, and we are getting to be in more of a pattern now. When we drive out of Santa Rosa and head down south, it is like we are stepping into a different world. We finally get to Riverside after 8+ hours of driving, and then check into our hotel - The Hampton Inn & Suites. The staff there has been so wonderful to us - giving us a special
"Kaiser" rate, and upgrading us to a suite at no extra charge. (Madeleine only gets to enjoy the room the first and last nights of our stay - but her aunt and mom take turns using the hotel room for rest. Her mom stays with her at the hospital each night, sleeping in the pull-out chair next to her bed.) That first night in Riverside, we head out for dinner at the Cheesecake Factory, where Madeleine always orders a side of brocolli (because they do perfect brocolli there!), another side dish, and a kids-size Sprite.

Dr Gailani
The next morning, we go to the hospital and get a round of blood tests an hour before our appointment with Dr. Gailani. He does an exam and talks with us about her treatment - he knows just how to talk with Madeleine to put her at ease about things, and he has a great sense of humor. After the appointment, they tell us to go out to lunch and to come back afterward and check in to the hospital. Where do we go for lunch? The Cheesecake Factory, of course! Good thing they have a huge variety in their menu :)

Madeleine gets admitted to the hospital, checks into her room (so far we've always been able to have a private one), and waits for them to take her down for surgery so that she can have a "central line" put into the vein in her neck (they put a new one in each time, and it is taken out at the end of the week's treatment). This line allows them to infuse the chemo drugs and take daily blood tests without poking her again. The actual procedure goes quickly and is done with local anesthesia, but it is a little unnerving to think about what they are doing and that they have to be very careful about preventing infection.  We always pray with her before this procedure and have been grateful to have a wonderful tech who takes her in and stays (and prays) with her during the surgery when we can't be there. Afterward, she has a chest x-ray to confirm that the placement is right, and then she is taken back to her room. By then it is usually near dinner time, so rather than eating hospital food, Madeleine decides what she wants and we bring the food in. She has no restriction on her eating while at the hospital and because chemo takes your appetite away, she is encouraged to go with whatever sounds good to her. All that night, she just gets fluids through her line in order to make sure that she is hydrated when chemo starts the next day.

Chemo nurse
The next morning, chemo begins. It is a little disconcerting to see the nurses gear up like they're dealing with "toxic waste" each time they attach a chemo drug - especially knowing that those same drugs are going into your body! (We asked the nurse about it, and she explained that they are careful with exposure and prevention of spills because exposure to chemo by someone who isn't the patient may mean that it is less effective on that person should they ever need it.)

Madeleine takes one of her chemo drugs in pill form each morning, and the rest are infused into her line at different times of the day. Interferon is given by shot daily after lunch time, and that shot often causes high fevers and shakes during the next hours. We definitely pray before each of those shots too because you can never really predict how the reaction will go. Even when Madeleine feels "cold to the bone" because of fever, she has the determination to keep all her sheets and blankets off to help keep the fever as low as possible in order to help avoid the worst of the shakes, the extra drugs they give you for the shakes, and the ice packs they have to put on you to keep your temperature down.

As the days of treatment progress, her appetite decreases and this is to be expected. We try to bring her whatever she feels like eating, but (honestly) not much sounds good - not even Cheesecake Factory food. By the second day, we don't open the hospital meals inside the room because the chemo drugs make her easily nauseous around those smells. Fortunately, popsicles and fruit are often acceptable, so we keep those on hand.

We have been impressed with how well the staff and doctor anticipate her needs, and adjust medications in order to combat symptoms when they first arise. Because of their attentiveness and expertise, the negative symptoms have been manageable (even when they are difficult) and are not allowed to get out of hand.

Another thing that has helped is that Madeleine has learned what works for her and what doesn't - and to ask for what works. And, a lot of the initial fear that was present during our first visit has faded as she has successfully come through each procedure.

One of the hardest things about the treatment is being so far away from home and friends while having to endure long hours in the hospital. Because of all the medications, it is difficult to concentrate on anything for too long (not even the Olympics!). It is also hard to come back home with such low energy - during the first week especially. Those of you who know Madeleine, and her love of being active and at the gym & pool, will appreciate how this is a challenge for her. But, as the days go on, her strength comes back and it is so wonderful to get back to feeling more normal by the second week home.

We go down for the fourth treatment during the week of August 19th. Thank you all again for your prayers and support during this time - you have been such a blessing!