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.

Half an Answer

It's been a busy couple of days since Monday's post. Here is a copy of what the plan was, and the results we now know (in italics):

• Today (that was Monday) Dr. Stephan sent us across the street to the Auburn Medical Center lab for some blood work. That will give him another gauge on the gall bladder issue. That lab work turned out nearly normal so at that point the gall bladder was beginning to look like it was not the issue.


• Tomorrow (that was Tuesday), again at Auburn Med, Bettie will have a HIDA scan of the gall bladder which will test its functionality. If this test proves normal, that will pretty much end that organ as a suspect in the pain mystery. If it is not normal, the bladder will be removed, probably within a week. For nearly two agonizing hours, Bettie lay on a hard table, under a camera the size of a Buick, while it took pictures of radio-active stuff trying to make its way into her gall bladder. (Not exactly the same procedure description you'll find in the medical texts.) Anyway, the HIDA scan revealed that the gall bladder is actually NOT working properly. Bettie will probably have gall bladder surgery late next week.


• Wednesday (today, at 7 a.m.) Bettie will go into surgery for a biopsy of the largest of the aforementioned knots in her tummy. This will give us an indication of just how serious an issue we are dealing with in the lymph nodes. Baring complications, she'll be home again that day. The biopsy procedure went as planned with no complications. We arrived at 7 a.m.; she went into the operation room with the "green suits" at 9 a.m.; Dr. Stephan came and gave me an update at 10 a.m.; I got to go sit with her in recovery at 11 a.m. and we left for home about noon.

So now she is back in her own bed, having just had a pretty good lunch (she had not eaten since yesterday dinner due to the procedure). She has pain pills to last the weekend and we settle down to await the results of the biopsy...the other half of the answer.

Doctor does not expect results until Friday or maybe even Monday. I had told him that I have an out-of-town event this week-end but I'll cancel at the drop of a hat if you say so. "Oh no" he says "Go ahead with your plans. If I need to I can reach you by cell phone. We won't be doing anything that soon anyway. You need the break." Since I have lots of live-in help, I sort of reluctantly have decided to go ahead with plans to sing with my chorus in a big "District Chorus Contest" in Whistler B.C. (Hope my cell doesn't ring while were on stage...I'd probably answer it!)

Of course I'll post the biopsy results as soon as I can, but that may not be until Monday. Remember that good things can come from all of this, whatever the outcome. Meanwhile, I'm still whistling.

Hold On With That Scalpel

In last Monday's posts I was sort of celebrating the news that Bettie was going to have surgery. It turns out the party was premature...well...sort of. She is going to have surgery, and soon...Wednesday, the 28th. But it won't be the gall bladder...at least not just yet. There is something more pressing, and possibly more serious.

Here's the story: Dr. Schumer, our primary care guy has referred the results of the most recent gall bladder scan to our old friend Dr. Stephan. (You may remember him from the posts on August 25th and 27th). He is not so sure that the gall bladder is actually the issue after all. That scan was, while not pristine, actually pretty close to normal. Not what you'd expect to see for the level of pain Bettie is suffering.

Meanwhile, a couple of other issues have come to the surface. When comparing images from the last couple of months, there is a noticeable increase in the size of several of her lymph nodes. In addition, a couple of suspicious knots have developed, close to the surface of her lower right abdomen. When I first noticed them about two weeks ago and pointed them out to the doctor, they were almond size. Now they are walnut size. Dr. Stephen does not want to remove the gall bladder, only to later discover that it was actually something else. So Here's the plan:

• Today Dr. Stephan sent us across the street to the Auburn Medical Center lab for some blood work. That will give him another gauge on the gall bladder issue.
• Tomorrow, again at Auburn Med, Bettie will have a HIDA scan of the gall bladder which will test its functionality. If this test proves normal, that will pretty much end that organ as a suspect in the pain mystery. If it is not normal, the bladder will be removed, probably within a week.
• Wednesday Bettie will go into surgery for a biopsy of the largest of the aforementioned knots in her tummy. This will give us an indication of just how serious an issue we are dealing with in the lymph nodes. Baring complications, she'll be home again that day.

While I like to keep this blog as upbeat (sometimes, I'm told, even funny) as possible, we all have to realize what could be going on here...and where it could ultimately end. So for now, it is very day to day. I'll know, and post, more tomorrow. The biopsy results however will probably not be known until Friday at the earliest and maybe not until Monday. In even the worst case however, nothing will be done the rest of this week. That is, the doctor does not foresee any condition that would require emergency action.

So I'll try to continue with the upbeat stuff, but just between you and me, I'm whistling in the dark here.

News! At Last Some News

As previously related, Bettie has been having right side abdominal pain, pretty much from mid-July when they discovered an issue with her gall bladder. In the last couple of weeks it has gotten much worse...to the point where she is only up to move to the bath or down stairs from our bedroom to the wheelchair, where she can be taken to the couch in the family room. Her appetite has deteriorated and she has lost at least four pounds...down now to 98!

Needless to say, this has been a great concern to the family and to her professional treatment staff. Both doctors Schumer (our primary-care guy) and Heide (her "stroke doctor"...actually a neurologist) have provided input. One of their suggestions was a new ultra-sound exam of the gall bladder, which was performed last Friday morning.

Today, Dr. Schumer got the results of that scan and called us with the news: "I'm referring Bettie to Dr. Pettie on Friday...she needs to have her gall bladder removed." I was out when the call came so I didn't speak with Dr. Schumer, but the bottom line is she will have the surgery within the next couple of weeks.

Now it will seem kind of odd to you, for us to be celebrating the need for surgery. This is not the kind of thing one usually looks forward to...kind of in the category of rejoicing over an upcoming root canal...like, who does that? However, if you were here with us, watching her decline these last couple of weeks, you would understand. When Rick told me the news from Dr. Schumer, my heart leaped in relief...almost joy. At last, they have found something. Yes!

Though it is often hard to read Bettie's responses, I think I detected some relief on her part too, when I told her about it.

Being a person of faith, I do not consider the gall bladder a vestigial (look it up) remain from a previous branch of the human tree. Nevertheless, its designed role can be omitted with little effect on one's lifestyle. It this case, I readily accept (for her, as I have durable power of attorney) a life free of both gall bladder and related pain, as opposed to continuing with both.

Modern surgical practice allows this type of surgery to be minimally invasive, which is fortunate, given how weak and frail she is right now. (On that note, I think we have arrested the weight loss and she is eating somewhat better the last couple of days.)

But there is a good thing that will come from this extra trial of pain, coming, as it has, on top of stroke. When Bettie is free of pain, the stroke will seem to me like a relatively minor nuisance in our life together. I predict that she'll walk with little impairment, get better and better at talking, and regain some useful functionality with her right hand. She might even feel like...well who knows. But she'll be back and that is news, at last some news.

Is the Worst Behind Us?

Gee, I hope so.

As you have noted, there have not been many posts to this blog recently. That's because I like to report progress toward recovery...and there has been precious little of it lately. But maybe we are turning a corner just now. By that I mean today...this afternoon!

To recap recent history, since Bettie came home from the hospital on the 30th of July, she has been frequently complaining of pain in the right side of her abdomen. At first we naturally (and probably correctly) attributed it to the drain tube that had been inserted into her gall bladder and which remained with her for another few weeks. When that was removed (see Maybe We'll Glow in the Dark) we thought that would be the end of the pain. It wasn't.

Next we discovered a badly deteriorated right hip joint. We arranged to have an injection of Depo Medrol in the hip to relieve the pain temporarily. It didn't.

Finally, just a week ago today we concluded that she had a bowel blockage. We had just selected a new primary care doctor (Dr. David Schumer) and he had an x-ray made that confirmed her bowel was full, but not necessarily blocked. Four days of Miralax solved that problem...but the pain persisted.

So today I took her back to Dr. Schumer to see if we could determine what we might be missing. Dr. Schumer is just the kind of guy I hoped we would find. (We found him simply by calling a physician referral service in Auburn.) He describes himself as a "former hippie" so you can imagine he is somewhat laid back. He has a wonderful way of making you feel like everything will be OK. He comes in the examining room, sits down, puts his feet up and chats with us as if we are the only important case he has and the rest of his day is ours. We like him.

His take on Bettie's current condition is basically post stroke depression. He says he sees it all the time. He reassures me that it will pass and gives me some tips and adjusts some medication and adds a new one to help with it. "I'll see you early next week...we'll get through this" he assures me. We leave and I feel better...Bettie, not so much.

Reassured that we're doing the right things, it is a little easier to help Bettie through this. For one thing, my son Rick (who I recently hired to be semi-full-time caregiver, partly because he is a former certified nursing assistant) has helped me soften my overall dealings with Bettie. I was getting a little bossy with her, he pointed out, whereas she needs tender right now...lots of TLC. I think it is working. Maybe it's just me, but it seems like she's feeling some better this afternoon. I got her to make some funny faces at me...that's always a good sign.

Meanwhile, the issues that put me in the ER last week seem to be past and I'm following a new regime on doctors orders...weight coming down, neck pain decreasing, and other good stuff. All in all, I'm hopeful that we've left the worst behind us and are ready to make some progress.