Hats

Our Miss Toni made up a mess-o-hats for Princess Vicki, very soft and very cute.

Uncle Keith

This morning Vicki and Jack got the sad news that Vicki's Uncle Keith had passed away. Keith had been in declining health for some time and hospitalized for the last several weeks.

Our thoughts and prayers go out to his loved ones, especially Cindy who loved and cared for him so long and so well.

All's Well, Pretty Much

I went to the hospital for several hours on Saturday to see Vicki. She seems pretty stable and it not suffering any side effects except for a rash she developed a couple of days ago. They're attributing it to the antibiotic they've had her on for her diverticulitis and so they took her off it. So far so good as she's had no more gut pains. Hopefully the diverticulitis has been knocked out for the time being. They're hoping that with the elimination of the antibiotic the rash will subside and fade away.

Other than that, she's very tired and run down. That's to be expected as she tries to build her blood cells back up. They were going to give her some more platelets after I left which usually makes her feel somewhat better.

Jack improves little by little every day. He has received some paper work from the Cardiac Rehab folks and once he fills it out, he should be able to start the program. His heart surgeon did not give him the go-ahead to start driving again but next Wednesday, he'll be four weeks post-op and that's when most people get the okay. He plans to pose the question again at that time.

What's Up with Vicki and Jack?

Well, I'm not sure. I haven't been able to get over to the hospital in the last two days and Vicki and I have been playing phone tag. I think if there'd been any back sliding I would have heard about it.

Tomorrow, I'm going to spend a good deal of time at the hospital so you can depend on an update.

Allelujah!

I don't usually post until later in the day but the news is too good to wait. After we left the hospital last night, our Vicki got in touch with a friend of hers (another Vicky) who's been an oncology nurse for many years. Afterwards, Vicky called our Vicki's oncologist and talked to him about what had been going on. As a result, Vicki's pain medication was switched from morphine to dilaudid and she's also taking Xanax for anxiety.

When I talked to Jack this morning, he said Vicki had gotten a good night's sleep without interruption from pain. She woke up and had breakfast and is feeling infinitely better. Her BP at 11 am was 123/72 and her temperature was 97.3 And here's the most telling sign: she's ordering people around and once again making lists for Jack (although he said she's now started a list for me, too).

I know that I feel better, Jack feels better (he even went out for a walk) and most importantly, Vicki feels better.

Thank you Vicky!

Bad Day for Vicki

Apparently, the nausea and headache started fairly early in the morning to the point where one of her doctors ordered a head CT (results unknown as yet). She was somewhat better and able to eat lunch. However, after lunch the headaches came back with a vengence. They need to keep an eye on her blood pressure to make sure it's not too high and not too low when they give her pain medication. Mid afternoon they did her morphine (which makes a big difference about 15 minutes after it's administered) and some platelets. By about 4 pm she was much improved and she, Jack and I watched some "Best of Johnny Carson" videos and laughed like fools. She was about to have dinner when we left tonight and I hope she has a good night.

Say extra prayers tonight, please.

Vicki and Jack Updates

Vicki

Yes, the last of the chemo bags is gone but Vicki continues to get antibiotics and morphine for her diverticulitis. She's been seen by a cardiologist for her blood pressure. They're experimenting with the doses. It's a delicate balance between keeping her blood pressure down but not letting it drop too low. We'll just have to see how things go.

Jack

He had his first post-op appointment with his cardiologist; well, actually he saw a Physician's Assistant. His heart and lungs sound good though they're upping his beta blocker a bit since his heart rate was a little higher than they'd like it to be. His chest wall around his incision looks good and stable so the PA is going to get the ball rolling on Cardiac Rehab for him. Jack is really looking forward to that.

The other pressing questions are (1) when can he get back in the saddle again [i.e. start driving] and (2) is it okay for him to begin walking the dogs, Phin and Leo, again. It turns out that that decision is up to his surgeon but the PA thought that most likely Jack will get the okay to resume both. I think the inability to drive has been one of Jack's biggest frustrations.

So keep the good thoughts going!

Last Day of the 24/7 Chemo Bag

Yes, when the bag runs out tomorrow at about 1:30 pm, that will be the last of it.


I spoke to Vicki today at about 11 am and she sounded pretty perky. Unfortunately, she said that the pain she had today (from the diverticulitis) upon waking was the worst she'd had yet. In addition, her blood pressure was up again (224/118 or something like that). So they gave her morphine for the pain and I don't know what for the blood pressure but she was feeling much improved. Her oncologist is going to have a cardiologist see her in an attempt to figure out the blood pressure problem.


Another friend dropped by to see her today and says that after tomorrow, Vicki will have a couple of weeks' break in order for her white and red cells to grow and multiply. She should be feeling better during this time, and the diverticulitis should clear up. The oncologist said that she would be in the hospital for this time period. The goal is to see new good cell growth and maturity so that they can "consolidate" the very few disabled cells that will be mopped up by another chemo course of some type some time after that.


I'm going to take Jack to his first post-op appointment with his cardiologist tomorrow. Vicki wants me in the room, taking notes, asking questions, etc. I'm not sure how Jack's feeling about that but you know how "persuasive" Vicki can be. Besides, it's probably a good idea. My husband had a triple bypass in 2000 so I kind of know the drill.


Keep good thoughts!

No More Bad Hair Days...

Well, she did it. Vicki had her hair all shaved off yesterday evening. I haven't seen it but she's totally unphased about the whole thing.

Today was not such a bad day. Apparently, the nurses have kind of a routine going so that when Vicki wakes up, they give her the additional chemo drugs, followed by anti-nausea drugs, followed by antibiotics and pain medication for the diverticulitis. Jack said he arrived at the hospital at about 11 am today and after Vicki had lunch, she slept until about 5 pm at which point Jack left to go home...just your typical married couple.

We're looking forward to Monday when the chemo drugs stop and Vicki can concentrate all her efforts on building herself back up so she can go home.

Pain, Bad; Pain Medication, Good!

Vicki got off to a rough start this morning. She was nauseous, and in quite a bit of pain from a bout of diverticulitis that seems to have come on (like she really needed something else on top of the leukemia). However, they've got her on a strong antibiotic and pain meds for the diverticulitis and she's a lot more comfortable. She's now about half way through her 7-days of chemo; they'll hang the last 24-hour chemo bag early Sunday afternoon and when that's gone she'll recuperate for about two weeks in the hospital.

Jack is looking better every day and is cognizant of his limitations. Of course, that doesn't stop Vicki from ordering him around. If it gets to be too much, he just retires to his cot by the window to rest. Vicki is bound and determined to have her head shaved before her hair starts falling out which they figure will happen on Monday. Monday is also the day that Jack has his first post-op visit with his cardiologist. I expect he'll get a good report.

Keep them both in your hearts and prayers!

Is it Just Me?

It seems as if everyone I know has at least one family member or close friend who is dealing with a serious medical condition.

I feel like I went to sleep and woke up in the middle of an episode of Grey's Anatomy except that the doctors are better groomed, nobody seems to be having any s*x, and I look more like Ben and Jerry's love child than Katherine Heigl.

Everyone - take care of yourselves out there.

What Cancer Cannot Do

It cannot invade the soul,
suppress memories,
kill friendship,
destroy peace,
conquer the spirit,
shatter hope,
cripple love,
corrode faith,
steal eternal life,
silence courage.

Testing, Testing!

I'm just making sure that I'm able to post to the Vicki and Jack Blog. Sharon will be taking a much needed vacation beginning tomorrow for about a week and I'll be your Communications Guide while she's away. Of course, no one can really fill her shoes but I'll try.

Request: Hair Clippers

Does anybody in the Bay Area have hair clippers they could loan us? Vicki is expecting to lose her hair soon and would prefer to cut it off this weekend.

Update: Clippers, check, got 'em. Can't wait to go see Old Baldy on Friday morning.

Chemo Day 4

Wednesday turned out to be a rough day. That nausea was tough going, eventually turned into lots of vomiting, a rough night and early morning. Now the sun is up and things are better. Our gal was looking spunky, had a twinkle in her eye, and was back to making lists and plans.

The doctor thinks the nausea will ease up now that there won't be anymore of the bad red chemo. Chemo side effects are expected in a couple of days; sore mouth, hair loss, maybe others, but we're expecting a nice routine day for Thursday.

Something to Think About

Worrying is like praying for what you don't want.

Chemo Day 3 - Nice and Stable

Vicki had some pretty good nausea going Tuesday night, but no vomitting. She wasn't up for much breakfast, but anti-nausea drugs helped and she had a decent lunch, mostly easy stuff like rice, pudding, and yogurt, but plenty of nutrition.

Her vitals are relatively stable and the chemotherapy is continuing. Today was the last day of the nasty red chemotherapy drug whose name I will mangle so I will not even try. She's pretty weak and tired, resting a lot more than the last few days. Between the chemo, pain meds, anti-nausea meds, blood pressure meds, and I don't even know what else, she's getting a bit fuzzy headed (stoned) and having some very vivid dreams (hallucinations). I have to admit that she had Jack and me giggling today and that I intend to give her a hard time about it when she's feeling better. (I'm a bad, bad person.)

She's been getting your cards and we've been taping them up on the wall at the foot of the bed where she can see them. We also decorated her room with pictures of Sea Ranch, which is a special place for her. She once told me that she feels most at peace there. We included some pictures of flowers to take the place of the real flowers she cannot have.

Thank You to Transportation Volunteers.

Jack's colleagues have been overwhelmingly generous in signing up to help with transportation. Some have recruited their family members to help and others have signed up for multiple shifts over the course of several days.

When I called Jack and told him about your generosity, I could hear the relief in his voice. He was eager to tell Vicki so she can stop worrying about this. This is going to be such a big help.

Thank you all!!!!

Update Wednesday August 20
I just published the final transportation schedule. Not only do we have a volunteer for every shift, in many cases a second person signed up as back up. What a great bunch of folks.

Chemo Day 2 - A Very Scary Morning

Everything is back on track now, but we had a big scare this morning; Vicki's blood pressure spiked very high which caused her a great deal of fear and discomfort. After some medication started to bring it back in line she felt quite a bit better, and resumed her campaign to get me to sell my condo and move to Clayton, making lists of books to be returned to the library, and checking e-mail - all at the same time.

Her blood pressure remained very high for several hours and there was some possibility of temporarily suspending the chemotherapy, but the medication finally kicked in as the morning progressed. By lunch time her blood pressure got down to an acceptable level and the doctors gave the O.K. to start the next batch of chemotherapy drugs. She will remain on the blood pressure medication while she's on chemo and the doctors say they don't expect another spike like she experienced this morning.

So far Vicki has only had a little bit of nausea. She had a full lunch and even got unhooked from her IVs long enough to take a nice shower and get into some clean jammies. We also learned that her white cell and platelet counts are up, which was an unexpected improvement.

Jack finally agreed to have a cot made up in Vicki's room and spent much of the morning horizontal. I'm not sure that he was exactly relaxing, but it's progress.

Chemo Begins

Vicki's white blood cells are low, but holding steady. Her platelets dropped again, but that's to be expected so the doctor gave the OK to start chemotherapy this morning.

As usual, Princess Vicki was a real trouper. Would you believe she was on the phone cancelling an appointment with another doctor at the very moment Nurse Regina was administering one of the chemo drugs through an IV push? Talk about multi-tasking.

There are two chemotherapy drugs; one is administered daily and the other drips continuously. This will continue for seven days. The doctor has written orders for lots of anti-nausea drugs and other medications to keep her as comfortable as possible, but with her blood counts already low she tires very easily. She will probably receive another transfusion tomorrow to help keep her blood counts up while the chemo destroys both good and bad cells.

Jack was looking and feeling a lot perkier after his day off Sunday. After a busy morning killing cancer, Vicki had earned a good rest so sent Jack and his chauffeur home. Jack is doing fine on his own at home, promising not to over do it which probably means he is still doing too much, just not as much as usual.

Support services are falling into place. A pet sitter is coming to take Leo and Phin out for daily walks and arrangements for housekeeping services are underway. In another day or two we should have transportation volunteers all scheduled.

Now all we have to do is get these two healthy!

The Calm Before the Storm

Vicki had a visitor in the morning, then was able to nap the rest of the day. She's received two transfusions and reports that these make her feel a lot more energetic. She also had an elevated temperature and blood pressure, but medication has brought those down.

Jack spent the day at home following orders to rest. Good Dog.

Even this blogger found some missing Z's on the living room couch.

Do You Sew, Knit, or Crochet?

If you're the crafty sort, start warming up your sewing machine, knitting needles, or crochet hooks. We don't know yet if Vicki will loose her hair with this chemotherapy, but if she does she requests soft chemo hats.

You can find some great patterns at Head Huggers Patterns. Please read about how much chemo caps can help cancer patients and especially the guidelines for fabrics and sizing at Charity Guide.

Post Your Comments

Vicki has her computer in the hospital. As long as she is feeling well enough she will be checking the blog for comments. We gave her access to create her own posts too, but reserve the right to revoke permission at any time if she gets up to any funny business.

The Diagnosis - Bringing You All Up to Date

While Jack was hospitalized for cardiac by-pass surgery we became increasingly concerned about the large numbers of unexplained bruises on Vicki's arms and legs. A blood test showed that all three of her blood cell types (red cells, white cells, and platelets) were abnormally low.

Jack returned home from the hospital last Sunday. On Tuesday morning Vicki had a bone marrow biopsy. A second blood test showed a further decrease in her blood cells. While waiting for the results of the biopsy her fatigue and bruising increased. Yet another blood test showed that her blood counts were continuing to decrease.

On Thursday evening she was admitted to the hospital. She received a preliminary diagnosis, which was confirmed on Friday. She has a form of leukemia called acute promyelocitic leukemia (APL). APL is caused by a specific translocation between parts of two chromosomes. This translocation prevents
myeloid cells from developing into mature white blood cells, leading to an abundance of abnormal, immature cells. The cancerous cells eventually crowd out the healthy blood cells needed for the body to function normally. Here's a link to an article on Wikipedia which will give you more information.

Treatment
On Friday Vicki began treatment with a substance that comes from vitamin A called all-trans retinoic acid (ATRA). She has also received a transfusion of platelets and will likely receive more as her treatment continues. She will begin receiving chemotherapy on Monday and receive it daily for seven days. After receiving chemo she will need around two weeks to generate enough healthy blood cells. She will be hospitalized throughout this treatment.

Prognosis
This treatment is aggressive so the coming weeks will be rough, but according to The Leukemia & Lymphoma Society APL "is the most curable form of AML" (acute myelocitic leukemia).

Although it's certainly not good news, we were relieved to learn that it is not metastatic breast cancer, which was our greatest fear. There is a small risk of developing this type of cancer as a result of some of the medications Vicki required to treat her breast cancer, but most cases of leukemia cannot be traced to a specific cause and Vicki's doctor says this is probably not related to her breast cancer treatment.

IMPORTANT: No Petunias, No Plums, No Parsnips

We have learned that Vicki cannot receive gifts of fresh flowers, fruits, or vegetables. She is under infection control precautions so these items are not permitted. Sorry. : (

Vicki asked me to assure you that she'd be happy to accept gifts of cash, lottery tickets, or precious gems.

Getting Started

I've started this blog to help us all keep in touch and up to date with the latest information. I've left it open so you can all post comments of support and encouragement.

Safe and Courteous Blogging
This is a public web site which can be viewed by anyone on the Internet. Be careful not to post any personally identifiable information. Here are some recommendations:

• Personal Information: Do not post hospital name or room number, last names, addresses, birth dates, phone numbers or other personal identification.
• E-mail Addresses: Do not use your work e-mail address. It's safest to use a free e-mail account from a service such as Google or Yahoo.
• No Really Bad News: God forbid, but if we have to share any really bad news, let's use the personal touch and call one another before posting.
• Be Gentle: We're all experiencing varying degrees of stress which means we're easily hurt. This is a place to be gentle, positive, and forgiving.