Results of the Biopsy

I'm writing this post today because Dick is unable to while he is traveling.
-- Steve Aitkins

It's Friday and Dr. Stephan called Dad today with the results of the biopsy. Dad got the call when he was on his way to Canada for the chorus competition. Luckily he wasn't driving.

The biopsy tests showed Mom has Lymphoma.

So there it is in black and white. I don't like writing nor reading those words.

For me, now several hours later, it's a lot heavier to read those words than it was to hear them when my sister Kim called me to relay the news between choking back her tears late this afternoon, "Are you sitting down? ..."

I guess I didn't really know what to think of that verdict. Is it a death sentence? Does it mean more pain to come? Or would Mom soon be out of the pain that she's been in for the last few months after coming home from the hospital?

There are several different types of Lymphoma; with some types a person can live for many years; others are more aggressive and even a strong person doesn't stand a chance. Mom's body has weakened considerably. She's lost a lot of weight because of her pain lately and from not consuming enough calories. So quite honestly we don't know if she is good condition -- at 95 pounds -- to fight this thing that has already began its harsh effects on her body. We love her and we certainly do not want to lose her, but we do not like seeing her in constant pain.

She is a fighter though and we proudly watched her rally with everything she had to fight back in the first weeks after her stroke. So she could have few rounds of fight in her.

Between you and me, I just gotta wonder: with all the exams and tests and all the time with several different doctors, and in and out of the hospital after complaints of localized pain, why didn't any of the doctors catch this earlier? How many doctors confuse the affects of Lymphoma with Depression? All Mom's doctors and nurses were outstanding and some of the nicest and most professional people I've ever met. I'm sorry but with that said, I just gotta wonder how this was mis-diagnosed or just plain missed for so long.

I've seen Dad play this whole scenario through many times, thinking out loud, "What if ..." And I know he's discussed the worst possible outcomes with Mom. But it's one thing to talk about it hypothetically and another to face reality. Because after all, those things happen to other people but not your wife, your mom, your sister or another loved one. Right?

Apparently not.

Dad said to me tonight, on the phone from Vancouver, Canada, "When this happens to you there's nothing else like it. You can't know how it feels until it happens to you."

I know what he means.

For me, I was caught off guard a second time today and unsure how to react or feel just yet. I mean I did feel horrible, that we were closer to losing my Mom. But no. It can't be.

I know when Veronica, my sister-in-law, called me on the morning of June 23rd and told me that Mom was taken to the hospital after an apparent stroke, I thought, "Apparent stroke. But not a real stroke. No. This doesn't happen to my Mom. She'll be OK. She'll be home in a few hours and joking about this whole episode."

I was just up in Seattle after all (I live in San Francisco, a two-hour plane ride away) just five weeks earlier for my parents' 50th anniversary celebration and she seemed fine ... well she was looking a little weak and not altogether herself. But she can't have a stroke. She's my mom.

And now I'm supposed to believe she can't speak or move her legs? No. Come on."

No. This happens to other people.

Finally it started to settle in and become real after several more status calls from her hospital south of Seattle.

"Wow. I guess it is real," I thought to myself. "I better get to Seattle before her condition gets any worse." But even then I thought I was in control while making preparations, packing, making flight reservations. But when I called my girlfriend Christine to ask her if she could take me to the airport I choked on those words, "My mom's had a stroke." And I had to try three times to get them out.

These things happen to other people until they happen to you.

And they do. Believe me.

Tonight I was reminding Christine to tell her mom (and dad) the things she really wants to share with them NOW; say the things that she really feels about her own mom before it's too late.

OK, next steps:
Dad is rushing back from Canada in the morning to be with mom and the rest of the family. He'll tell Mom about the cancer when he gets back, assuming she has not read it on everyone's faces by then already.

On Monday morning Mom and Dad go back to Dr. Schumer to get more specifics on the biopsy and hopefully find out exactly what type and the severity of the Lymphoma mom has been dealing with and how to move forward.

More next steps:
As Dad suggested in his post titled "On Saying Goodbye" ... excuse me for the sappiness of this, but it is sincere: May I also suggest you to tell someone close to you that you love them today, and maybe a couple reasons why.

I love my mom ... for reasons too numerous to list here.

Bettie Has Been Shot!

Right on (the revised) schedule, Bettie has had an imaging-directed injection of Depo-Medrol in the right hip ball joint. (Our hope here is to give Bettie a few months of pain relief while she gains enough strength to cope with a future hip replacement.) I had thought that she was going to get something to lubricate the bone-on-bone condition there, but that's not what this stuff does. It turns out to be a pretty effective anti-inflammatory drug...most of the time.

Like the investment caveat "Past performance is not a guarantee of future results", so it is with this treatment. The doctor who did it says its effectiveness can be from no pain relief at all, to complete pain relief for many months. Most patients have good outcomes, and the injection can be repeated up to three times. But for now, it is wait and see.

An anaesthetic was injected first and that will wear off later today. When it does, we should not expect any improvement today, as the Depo-Medrol takes 24 to 48 hours to begin its magic. Thursday...that's when we hope to see her resurrection, so to speak. Hopefully I'll have a good report on how things look Thursday evening.

A Follow-up with Dr. Heide

If you have read this blog from the beginning, you will recognize Dr. Heide as a key player in this whole drama. I first met him via video hookup while Bettie was in the ER, the day it happened. Over the course of the last five and a half weeks, we have come to know, trust, and be thankful for this man.

Today was the Bettie's first follow-up visit after discharge. It took place at his facility, in Renton, near Valley General Hospital. It began with a new scan of Bettie's head, so that a comparison could be made with Day One. Then Bettie was weighed (104.2 lbs... down about 20 pounds from five weeks ago) and finally we saw our friend, Dr. Heide.

He showed us the scan on his computer screen, blown up to reveal startling detail (if you know what you are looking for). He pointed out that the original scan clearly (at least to him) showed the clot, right where speech and communication are processed.

Today's scan, did not show a clot there at all! Now before we get too excited, he wants to do a different kind of scan next week that will show different detail to confirm that the clot is, in fact, gone. If it is, that will considerably improve her prognosis.

Part of the doctor's routine involves asking Bettie her name. I don't think she has ever been able to answer that question for me ... but then I'm not a doctor. But for him, she says "Bettie Aitkins", like "Well duh". Seems like this happens too often to be a coincidence. Oh well.

An interesting part of the conversation with the doctor was about music. You may remember that my son Steve, suggested that we put headphones on Bettie and play her old but familiar music (See the post titled: The Sound of Music). She responded dramatically, singing along before she could speak or put other sentences together. Evidently, that idea of Steve's had not been explored by the medical community before. Dr. Heide says we are exploring new ground here and he is very interested in discovering the potential for communication with stroke patients via music.

He wants me to continue singing to, and with, Bettie. I told him I know a lot of songs, since I sing in a men's chorus (Northwest Sound). Unfortunately, I sing bass, so if Bettie starts croaking in a deep voice, blame me.

Before we left Dr. Heide's office and went out to set up the follow-on visits with his nutrition expert and others on his staff, he told me this: "After Bettie's stroke, I had a number of other patients with the same type of stroke. I have directed them to the Bettie's Challenge blog for help with dealing with the situation, and it has been very helpful. Very helpful."

I have to tell you, that gives me a big lump in the throat. We have known all through this that the Biblical promise (Rom. 8:28) that "... all things work together for good ... " is true. Dr. Heide's comment demonstrated one way that it is happening (and there are undoubtedly others as well). Very humbling.

If you are one of those refereed here by Dr. Heide because you too are traveling this road, know that you are not alone. Feel free to contact me directly if there is any way I could be of help, I'd be honored. Contact info is on the Profile page.

A final, but very important, point from the doctor. I asked him how he was coming on procuring a very expensive but promising piece of new technology that could be helpful in regenerating brain tissue. He said that, with the federal government proposing to take over the health care industry, it is currently impossible for any doctor to make a sensible business case for major equipment expenditures. Our elected officials in the executive and legislative branches of government are already having a negative effect on the medical profession, and they are only talking about what they want to do.

This blog is not about politics, but about the care of a stroke patient, my wife. My recommendation concerning the issue is this: ask your doctor what he/she thinks about the issue, then write or phone your representative and tell them your personal concerns, based on what you have learned. Would it be asking too much of your representative to insist that they read and understand the bill, at a minimum, before voting on it?

The Doctor's Prognosis

It's kind of a shock to walk into your wife's hospital room and find someone else in "her" bed. You can imagine the initial reaction when you are dealing with stuff that is sometimes terminal. To my relief though, she had only been moved. Whew!

So, if you visit, you will now find her in the "Cedar" wing of Highline Medical Center, room 526. Take a left out of the elevator, then a right after passing over the cafeteria, to find her room. It is a nice single bed room with a view of the SeaTac Airport. (Hmm...SeaTac Airport. Did I tell you that that is where we met? She worked in Northwest Airlines reservation center, in the upstairs of the big Northwest hanger, and I worked on the planes, down on the maintenance floor, as an A & P mechanic.)

Sweetie was awake and responsive for most of the 2 1/2 hours I spent with her this morning. The most impressive response, and it was not actually a response to anything, she simply asked me at one point: "Do you know what time it is?". Now she didn't actually want to know the time, though I told her ... and the day and date too. It is encouraging to see that a seven-word phrase can be put together and spoken, even thought it is not related to anything else.

I was very grateful to have Doctor Heide appear at 10 a.m. for his daily check-in with her. I asked him: "Don't you ever get a day off?" "No" he replied, "but I'm coping". What a professional.

Anyway, after not seeing him for two days, I was full of questions. So here's his opinion of where we go from here, based on his 16 years of dealing with stroke and his current caseload of more than 1,000 patients:

• She is past the critical stage, brain swelling is going down.
• The clot is not diminishing as I previously stated, but some blood is flowing past it. It will likely be permanent.
• She is expected to walk again, maybe with a limp or needing a cane.
• Her right hand and arm may have very limited, if any function.
• She will have difficulty communicating, but family will eventually get acquainted with her expressions and cope fairly well.
• She could possibly be ready to come home in three to six months.
• She will not have amnesia.

These are the high points of his prognosis. We all realize that each stroke case is different. As they say in the investment world: "Past experience is not indicative of future returns."

Oh, one other thing you should know. Dr. Heide is attempting to acquire a new state-of-the-art device that uses magnetism to stimulate brain tissue growth. He will be one of the first in the country to use the device, but the $50,000 price tag may delay it's acquisition. Let's pray that deal comes together.

After the doctor left, we had a nice long quiet time together, we both even fell asleep at one point. Finally, about 11:30 a.m. friends arrived to be with Bettie so I left her in their company.

On the way home, I stopped to have lunch and visit with dear old friends. What a joy to be hosted, loved, encouraged, accepted, and listened to by people of quality.