Chemo doesn't feel good. But on the other hand, chemo is trying to save your life, so you do it and you put up with the side effects.

Chemo has side effects. So do the pre-meds you get. Steroids, antihistamines, and relaxants are often given as pre-meds. So not only do you need to be aware of the side effects of the chemo, but of all the other medications given as well. It is necessary to know this so that you can monitor yourself during the process. The patient must know what to look for in order to notify and inform medical personnel if something seems to be going wrong. In Jackie's case they gave her a pre-med called reglan. This caused a condition like lockjaw for several days after taking it. Because we didn't know all the side effects, we assumed it was normal, and Jackie had to suffer through a second round of lockjaw-like symptoms, instead of catching it right away and switching to a new pre-med. It wasn't until we saw one of the other doctors during a visit, and mentioned the problem, that we found out that it was a probable side-effect. Jackie was switched to compazine, but since we now knew Rule #14, when it had side effects she got switched quickly to decadron, benadryl, and Ativan. KNOW YOUR DRUGS. Ativan can be addictive, Jackie knew this from a family experience, and so she was careful and afraid when taking Ativan. Of course, Jackie was also the type of person that hated taking medication at all, and always quit taking any of it at the earliest possible time. We had a lot of almost finished prescriptions. It is my opinion that once you establish trust with your doctor that you should be willing to follow his regimen -- including finishing the prescription. Jackie and I agreed to disagree about this.

During all the time of treatment, the one thing I learned to expect was that I couldn't expect anything. Things we were told would be no problem were a problem, and things that were supposed to be problems were no problem. Not only was it always something -- it was always something unexpected.

Unfortunately, Jackie's personality was not one that thrived on chaos, or one that lived for the unexpected. She liked having everything laid out, preset and planned. I wish that things had worked out that way during chemo for her sake, but they just didn't, and I don't think we were unusual in this regard. One time Jackie was supposed to go for a chemo, but her counts were too low to get it and so she had to reschedule. She had herself so psyched up and ready for the chemo that the letdown of not accomplishing it had her in tears.

An explanation of counts. The counts that the doctor primarily looks at are the white blood cell counts. They don't usually rely on a raw count, but they look at stuff called segs and bands. The key here is that if these numbers are too low, the chance of infection due to a lowered immune system is too great to get the chemo. Secondarily, they look at platelets, which are a measure of clotting ability, and red blood cells, which carry oxygen and, which when their count is lowered, account for the tiredness you get in chemo.

Another example of the unexpected was Jackie's low blood pressure during chemo. Her blood pressure got so low that there were periods where she would almost faint just from standing up. Sometimes, her blood pressure was as low as 80 over 60. This condition confounded her doctor so much that he ordered up a series of tests to see what was going on (he couldn't see how this was a chemo side-effect). One of the tests was Jackie's first CAT scan.

Surprise -- they were doing the scan when she broke out in hives and had great difficulty breathing -- to such an extent that they considered admitting her to the hospital. It turns out that Jackie was allergic to the contrast they use (iodine based) to be able to see your insides better with a CAT scan. She was never able to have contrast again when having CAT scans. For some reason, even with this limitation they never switched her over to MRI's or another alternative type of scan. I don't know how much the limitation of no contrast resulted in terms of reduced ability to see what was going on. But it's a good thing she had someone there to drive her home that day.

Surprise again- it turned out there was no new problem that they could find, and the simple expedient of taking salt tablets significantly reduced her dizziness.

Throughout a treatment program, remember you are unique. It is easy to oversimplify, and to say that every patient is part of a statistical base and should be treated according to statistical averages. Don't let that happen. Start with the statistical average, whether it's a dosage, a treatment, or an expectation, but remember that it is only a starting point. Make your doctor fine tune everything regarding your treatment. Get the maximum treatment. Have your doctor adjust the dosage on the chemo if it seems that you can tolerate it. If you are tolerating it well there is a good chance the cancer cells are tolerating it well also. Talk to your doctor -- force him to look out for you.

Once Jackie got on the right pre-meds the chemo started going MUCH better. Again, everyone is an individual, but in her case she had nausea for the 12 hours after chemo, followed by queasiness, which became tiredness after a couple of days, and then faded into a general "I don't feel as great as I usually do." Remember that if you don't feel good the cancer cells should be feeling much worse and dying in droves, so take some comfort in that. Unfortunately, about the time Jackie would start feeling normal again, it signaled the time for the next chemo. I have been told by some people that have had the truly strong chemo's (usually administered in the hospital) that their bodies actually generated fear reactions prior to going in for a chemo. They got nauseous and panicky, and really had to force themselves to get their treatments. Luckily, Jackie didn't get that way. She didn't like going, but it never got to the point where she was physically ill on the day of the chemo.

When talking to the doctor prior to Jackie's first chemo, he suggested getting a thing called a Port-a-Cat. This is something that makes it easier for the nurses to give chemo, and if you're lucky makes it easier for the patient. After being stuck for the first chemo, and knowing the number of times she'd have to get stuck in the upcoming months, Jackie decided to go ahead and get a port. There are several different kinds, and it is important that you understand the different types, how they work, the kind of care they need, how permanent they are, and how they should be placed. Jackie got the kind that is surgically implanted under the skin ( they are all surgically implanted, but they don't all reside under the skin). A port-a-cat is a metal device that's about an inch to an inch and a half across. It is flat on the bottom, and there is a special plastic covering over a reservoir area. A tube attaches to the reservoir and travels through the body to a large vein, where a needle on the end of the tube enters the vein, a major one. Accessing a large vein like that reduces the toxic effects of the chemo on the veins themselves. Using arm veins can permanently damage them, and that's what happened with Jackie. Damage here means that the little muscles in the veins that control blood pressure clamp shut when a needle is stuck in that vein, which effectively closes it off. The other thing a port allows for is easy access to the vein. As opposed to having to try and get a needle in a vein both to put stuff into you as well as take blood out, the nurse only has to find the port and stick through the skin covering the port. This is supposed to reduce the pain of being stuck, and seems to do so fairly effectively.

However, in Jackie's case, she was basically a thin person and didn't have a lot of body fat, so her port placement was critical, and it didn't quite come off right. It ended up being under her collar bone on her left side (opposite the mastectomy) and right about where her bra strap went up to her shoulder. This is why placement is important. See where it's going in normal circumstances -- like when you are wearing normal attire. Jackie's bra irritated the skin over the port, causing her to have greater pain on being stuck in the port than if she had been stuck in the arm. She couldn't wait to get it out.

The other thing Jackie checked on was something called a cold cap. Nobody was sure if they did any good, and they had already quit making them when she had her chemo, but the doctor had some in the office. A cold cap was supposed to chill your head and reduce blood flow to the scalp. The theory was that this reduced the amount of chemo in the scalp, and therefore reduced the probability of hair loss while only slightly reducing the effectiveness of the chemo, since most people don't get breast cancer recurrence in their scalps. As I said, Jackie loved her hair and so this gave her a better feeling about the chemo.

The fact that Jackie's attitude was improved by the cold cap was the most important benefit to using the cold cap. I don't think it did anything more than improve her mental outlook, although her hair did not fall out. But anything that does that during the stress of chemo and while dealing with cancer is extremely worthwhile.

There are a number of support groups out there for cancer patients. In particular, Bosom Buddies is there for breast cancer. Jackie participated in Bosom Buddies on and off for about one and one half years. I talked to a couple of the ladies in the group later on, and they told me how much Jackie's talking about her experiences had helped them with theirs. I asked what happened at the meetings, but she didn't talk about it much other than to say that they all discussed what was happening to them in their own fights against cancer. Some of these discussions were medical and others were about associated problems. Cancer is traumatic, and for some of these women, their spouse or significant other apparently couldn't deal with it.

From what I heard, some of these women's husbands became cold and unsupportive, and apparently a couple even divorced them during this difficult period in their lives. I personally don't understand how someone could do this. The other problem that a number of women had was financial. Cancer is not only a physical disease -- it can affect your pocketbook as well.

This is obviously a huge issue. Not only were these women suffering from cancer, but they and their families were suffering from financial debilitation as they struggled to pay their treatment bills. I heard of an instance of a woman who refused to have chemo because she didn't have insurance, and she didn't want to bankrupt her husband (I later heard that somehow they got the money so she did get her chemo). The point is that you have enough to worry about without worrying if you should even get treatment just because of financial reasons.

In our case we had pretty good coverage, except for one area I'll talk about later, but for some reason I had some hospital bills that even a year after treatment had not been paid, and that the hospital was in the process of turning over to a collection agency. Fortunately, one of the better people in our human resources department finally cut through the red tape at the insurance company and got my bills paid, before we got to credit rating damage. It's just another example of the kind of hassle that you don't need to be expending your energy on when you should be concentrating on your health.