Kathi B Writes About the Big C...and Other Things

And they’re not good. I’m going to Sloan-Kettering next week to find out if there’s anything they can do for me. But if not, the Good Doctor says I’ve got between 3 and 7 months left. 

Steve and I are both freaked out, although I’m still so weak from being in the hospital that I’m not reacting the way you’d expect...no crying, no hysterics, just a lot of sleeping. 

One of the side effects of this chemo is a complete lack of appetite. So I’ve been eating less and less and losing more and more weight. I’ve got a disgusting medication that I need to take in order to help build my appetite but I haven’t been taking it because it’s so gross. 

Problem is, today I woke up really weak — like, weak to the point where I could barely walk. I had a doctor appointment and talked to him about it and his only answer was that I need to eat. So I have to force down the disgusting appetite stimulant and force down food. Meantime, trying to get up and down the stairs in our split-level house to get to the bathroom is not the easiest thing to do. 

It scares me to be this weak because it makes me feel like this is what it’s going to be like as I get closer to the end. Right now I can’t imagine keeping this level of strength, or rather lack thereof, for more than another day or so. But I have a feeling it’s going to take me a while to get the appetite back, and I’m going to have to be a grownup and take the stimulant medicine even though it tastes like doing a shot of bourbon and triple sec at the same time. Some people might like that but I don’t.

OK, what fun things do people do once a week? I get chemotherapy! This is the first time since I was initially getting chemo that I’ve been on a weekly schedule and I definitely feel the difference. There’s not a whole lot of time for the side effects to hit and run their course before the next treatment, so I’m basically always having some kind of reaction all the time. 

I’ve had 3 treatments of vinorelbine and I’ll be getting 5 more weekly treatments before the next scan. The Good Doctor said he had a patient with sarcoma who had success with this drug, but that’s no guarantee of a similar outcome in my case. Honestly, at this point I just want it to stop the growth; I’m not even looking for shrinkage anymore. Just something.

Have you ever noticed that there are just some people who always have good things happen to them? Have you ever wondered why? 

Maybe you’re one of those people. Or maybe you’re someone like me, whom it seems like has the balance tipping too far in the not-so-good direction. I ask myself every day, “Why did I get this?” And I know there’s no good answer, none that’s intellectual or logical. But there’s always the thought in the back of my mind that says, “You got it because you’re just one of those people for whom good things don’t happen.”

Now, I can’t say good things never happen for me. I found Steve, I have good friends, my company is being very cooperative about my illness. But then there are the other things. Like cancer. And financial struggles. And depression and anxiety. Someone looking at my life would probably see a pretty equal balance. But when you’re fighting cancer and every day is a struggle with exhaustion and pain and other side effects, it’s hard not to wonder how there are people out there who just seem to have good things handed to them. And what did they do, what karmic events took place to put them in that position? 

A big surprise when I talked to the Good Doctor the other night. Not only did he agree that we needed to stop Yondelis because it wasn’t working, he had the next chemo drug all ready for me to start this week — and it was one that I’d read about and was planning to ask him about. So I guess I have to stop trying to do his job for him and assume he knows what he’s doing.

Tomorrow I start on vinorelbine, yet another in the more traditional types of chemotherapy. This one is derived from another sea plant and it works by stopping the cancer cells from dividing in two. So it’s less likely to shrink the tumors than to stop their growth. But it can also shrink them, because the Good  Doctor said he had a successful shrinkage in someone he gave this to with a sarcoma. 

The big question is the side effects. I’ll be getting this in a weekly infusion and it seems to have all the traditional chemo side effects — nausea, lack of appetite, constipation and, possibly worst, hair loss. From what I’ve read about it, many people who do lose their hair don’t lose it all; but that can actually look worse than if you lose part. But not everyone loses it, so I’ll hope for the best. Look, I’ve rocked the bald look already once, so if the worst thing is that I go bald and the stuff works, it’s a small price to pay.

I had so much going on when I blogged the other day that I forgot to talk about my lungs. I went to my primary care doctor to get clearance for the trans-esophageal echocardiogram I was supposed to have the next day. That, of course, got kaiboshed because of the UTI. But she didn’t like the way my lungs sounded and sent me right over to a pulmonologist. 

The pulmonologist looked at all my CT images from the past few scans and listened to me breathe and took history, and determined that there is necrotic material — dead tissue in my left lung where the big tumor was — that’s pushing against my bronchial tube and creating a situation as if I have asthma. So he gave me a fast-acting steroid to open the passages and a long-term asthma medicine to keep them open.

My wheezing and breathing seem to have improved quite a bit. But he says that I’m operating with what amounts to half a lung capacity in that left lung for breathing and that may not improve. A person can certainly live with that, especially if the other lung is working fine, as mine is, but it’s still disconcerting to hear. And I’ve been blaming all of it on a long-term sinus infection that doesn’t exist anymore.

I had scan results come back yesterday and they’re good and confusing. I had some shrinkage on the liver tumor and one of the lung tumors but there are two new very small lung tumors also. I don’t know what to think so I have to wait for the Good Doctor — who had such nerve in going on vacation — to come back and explain this to me and also tell me what we do next.

Meantime, my “vacation” of a few days last week was really kind of a bust because I wasn’t feeling well and I was really depressed about this whole cancer thing. We did have one nice day when we drove out on the north fork and ate lunch at this great place called the Southold Fish Market, an actual fish market with a full restaurant. Yummy stuff. We also drove into the village of Greenport, which wasn’t overly impressive to either of us. Then we stopped at Briermere Farms for a blueberry cream pie, which was heavenly as usual. But that was pretty much it. I spent a lot of time napping and a lot of time crying and it was kind of a bummer as far as vacation time goes. Hopefully we can do something better later in the summer.

Some of that will depend on what the next treatment options are. I’m wondering if it’s going to be time to look for clinical trials now or if there’s another chemo option — we were given one more suggestion by Sloan that we haven’t tried yet but it may not be feasible because it’s a combo and I already had one of the drugs as a single treatment early on. The Good Doctor will have to determine it.

So I’m feeling a little better today and wondering if the last treatment is starting to wear off. I could use a break and need to do a lot of work in the coming couple of weeks so it would be helpful to have some of my strength back. 

Oh, my god, I said “breast”!!

So a couple of weeks ago I had a needle biopsy on the lump in my right breast. It was kind of a cool procedure in which they numbed the area and stuck in a needle with a collection thingy to take out samples. I got to see the samples, which looked like half-inch strands of yellow yarn. I was surprised that they were yellow — I was expecting them to be black for some reason.

At any rate, I got the results back last week and the lump is malignant, the same cancer I have in my lung and liver. The Good Doctor and I will be talking lumpectomy at my next visit on June 4th, but he’s indicated that he’d like to see how the chemo works first.

I’m in the midst of a chemo treatment right now — the pump is pumping away — and every day I feel like I’ve gone 12 rounds with George Foreman (who invites you to contact his friends at Invent Help). I get pretty depressed about the fatigue, but as Steve keeps telling me, it’s part of the drill. And the breast is just another hurdle to deal with. 

When my scan came back last month, there was a new nodule in my right breast. Initially the Good Doctor didn’t seem overly concerned with it, but when I brought it up at my visit last week, he gave me prescriptions to have a mammogram and an ultrasound on the breast. I had them a couple of days ago and the radiologist said that based on the shape and density of the nodule, it’s almost certainly part of the malignancies I already have.

So next week I’m having a needle biopsy. They use local anesthesia and stick a needle with a collection thingy into the tumor, collect 4 or 5 samples — the collection thingy opens and closes so there’s no spread of the collected material — and send them to the lab. But it’s pretty well definite that I’m going to have to get the nodule removed. Luckily it’s small enough that we can do it with a lumpectomy.

The lumpectomy is an outpatient procedure that’s done under general anesthesia; they take out the lump and I go home the same day. It lets me keep the breast and keeps the shape largely intact. All in all, it’s not a terrible thing. The lump is right near the surface — I can actually feel it — and will be more easily removed than if it were deeper or larger.

OK, I’m not overly happy about this. But I keep saying it could be so much worse. It could be large enough that I’d need a mastectomy. Or it could be multiple tumors. Lots of “or”s. At the same time, I’m not looking forward to either the biopsy or the lumpectomy. In fact, I’m pretty nervous about them both. But they have to be done.

It goes a long way. I got word from the Good Doctor a few days ago that my last chemo, which was half the strength I got the first time, did not negatively impact my liver functions. That means I can continue getting chemo at the same half strength on schedule. So I’ll be getting my next dose on May 3rd.

So that’s a good thing. The only bad thing — other than having cancer, obviously — is that the fatigue is unbelievable. There is no good way to describe how tired I am every day, and how easy it is to become completely worn out doing the simplest things — going up a half flight of stairs, walking around CVS, sitting at my desk working for a couple of hours. It’s extremely frustrating and makes me feel guilty for not being physically stronger.

The whole guilt thing is always hanging over my head, and I have no logical reason to feel guilty about anything. But I think women are conditioned to feel guilty about everything. I’m working on that, but it’s not easy to overcome.

When I started this blog, one of my goals was to be totally honest, actually blunt, about what it’s like to have cancer. But I think over the years I’ve somewhat sugarcoated things so that people didn’t think I was too weak or whiny about it. So today I’m going to be blunt about how I’m feeling right now.

I had a 24-hour chemo infusion that ended at around 5:00 when they disconnected my pump. During that period, I was a little bit nauseous and a little bit dizzy and — sorry for the indelicacy — a lot constipated. For some reason, I’m also cranky. I’m extremely tired, not sleepy but how-the-hell-am-I-getting-up-that-half-flight-of-stairs-to-go-pee tired.

I have periods where I get very depressed and think a lot about dying. Then I have other periods where I feel fine and don’t think about it at all. I’d love to be able to say I’m all positive about the future and wake up every morning all grateful for the new day, but that’s just not me. I’m also affected by the weather and the winter was rough. But this taste of spring is very helpful toward making me feel better.

That’s about it for the moment. We’ll see if this chemo messes up my liver again or if I can get on a regular schedule and maybe get some positive results for a change. And sorry if I’m bumming you out, but sometimes you just have to get real about things. 

They say you’re supposed to try and find the good in bad situations, so here’s what’s good:

- My lungs are clear and I’m breathing well - I’m strong enough to work full-time - The Good Doctor says I look great - The tumor in my right lung did not grow...didn’t shrink but didn’t grow - Best of all, I have an amazing, wonderful husband

But then there’s the bad:

- The big tumor that was in my left lung that we thought was dead has come back to life - The tumor in my liver has almost doubled in size to 6 cm. - There’s a new very tiny tumor in my left lung that’s 1.5 cm. - There’s a new very tiny tumor in my right breast that’s 1.5 cm that may or may not be something

So. What do you do with that? I got the results of the scan on my patient portal last Friday and spent 5 days until my doctor appointment in a complete panic. I started writing my obituary and planning my funeral again. I cried a lot. I didn’t get much sleep. I took extra Xanax to try and stay calm. 

And then I saw the Good Doctor yesterday and he told me to stop freaking out because we’re going to hit it all with trabectedin (brand name Yondelis), which I had back in December, and see what we can do. I’ll be having half-doses every 3 weeks rather than full doses, which will hopefully keep my liver function numbers in check and allow me to get the full schedule. The other person in the practice who’s had this drug had good success with it, but if I can’t get a full schedule of the stuff, we won’t know what it can do. 

Meantime, we’re stopped on the radiation because at this point, the Good Doctor wants to do systemic treatment because there are several tumors we need to deal with. Later on, way down the road, if the chemo doesn’t work, we may need to think about surgery. But we’re not thinking about that yet.

So, again. What do I do with all this? Frankly, there’s not much I can do other than take the chemo and hope it works. I’ve calmed down and stopped freaking out -- the Good Doctor is a very calming presence. And while I wouldn’t say I’m feeling optimistic, I’ve stopped planning the funeral and the obituary is on hold. I still didn’t sleep very well last night but I’ve got the usual menopausal insomnia to deal with. 

Oh, and just for fun, I’m on antibiotics for a completely unrelated urinary tract infection. And I have a non-obstructive 2 mm. kidney stone floating around in my right ureter.

I finished this batch of radiation treatments 8 days ago and saw the Good Doctor 6 days ago. Rather than plan another dose of chemo, he wants me to have a scan on April 2nd, then see him again on April 4th — if the scan shows that the radiation worked, he doesn’t want to use a chemo treatment unnecessarily. So my homework, in his words, between now and then is to recharge my batteries.

The main question to my mind is, how do you recharge batteries? It’s not like I can plug a cord into my back overnight and be back at 100% in the morning. So my way of thinking is that there are 3 main ways to go about it:

- Rest: It seems like all I’ve been doing since my hospitalization last summer is resting. I sneak in a nap every day and get 6-8 hours of sleep every night, and I spend the greater part of the remaining hours sitting. I think I’ve got that covered.

- Eat right: Ummm...OK, I can do way better on this one. I should be loading protein but I’ve been loading protein for more than 3 years and I’m so sick of it. My sweet tooth is also in overdrive lately, not exactly the best thing for a diabetic.

- Destress: Yeah, right. Between work and the family situation — not to be discussed here so as not to ruffle feathers — it is pretty much impossible to avoid stress. The best I can manage is to try and deal with it as best I can.

OK, so over the next 3 weeks, I have to be a good girl and do my homework assignment. It’s funny how my tendency to want to please people still comes back...I don’t want to disappoint the Good Doctor by not being more energetic and healthy when I see him next, but at the same time I don’t know that 3 weeks is long enough to make anything happen.

I just had my last radiation treatment! This round was worse than the previous two because the fatigue has been really debilitating. The radiation doctor said that the stereotactic body radiation treatment (SBRT) produces much more severe fatigue because the doses of radiation are higher than with the standard treatments. But he again said he’s confident that we hit the tumors hard and this should work. I hope he’s right. 

So now I’ll be seeing the Good Doctor to talk about having another dose of chemotherapy. My appointment is supposed to be this Wednesday but we’re on bread-and-milk alert for a foot of snow so the appointment is likely to be rescheduled. Bread and milk!! Bread and milk!! Run, run, run!!

I’m surprisingly emotional about finishing this round of radiation, I think because everyone is so sure that it’s going to be successful and I want to share their enthusiasm but I’m afraid to. I’m also just so tired that everything makes me emotional these days. 

On Thursday, Steve and I will be traveling to the Poconos for a few days of gazing at the scenery, frequenting the indoor heated pool and hot tub, and dining on local cuisine — a hopefully relaxing mini-vacation prior to starting radiation therapy next week.

On Monday, I’ll begin 2 weeks of stereotactic body radiation therapy (SBRT), a different type of radiation than I had the previous 2 times. SBRT is much more precise and can pinpoint the tumor better than regular RT, and it’s possible for me this time because of the location of the tumors. I’ll be getting SBRT on a tumor in my right lung and another on my liver. Because the SBRT is so much more precise than regular, it’s given in a much higher dose and can be completed faster. That’s why it’ll only take 2 weeks instead of the 6 weeks I had in the past.

Then after the SBRT is done, I’ll probably be having a half dose of chemo with Yondelis to see if my liver tolerates the smaller dose better. If it does, I’ll likely continue with my chemo and at some point we’ll scan and see what’s happening.