Chemo Complications

This is Izzy, my Shih Tzu, modeling what I referred to as my “cancer hat.” I bought it at the wig store. It went down farther in the back than a regular ball cap to cover more of my baldness. As I mentioned in my previous post, when I started losing my hair I just had it all shaved off which made wearing the wig easier. I much preferred wearing a hat out in public and really didn’t mind that much but more often than not, just wore a ball cap. The wig was fine, but some of my hair growth at the sides would show through at times, so I was always worried about trying to keep everything in place.  Remember that when purchasing a wig. I bought mine well before I lost my hair so I would be ready. When you lose your hair, you lose it all over your body. It made me feel like my entire body was wrapped in Saran Wrap–not a pleasant sensation. But it also meant I didn’t have to worry about shaving my legs or plucking my face for an extended period of time. Be grateful for what you can be grateful for at this time!

I always thought that losing my hair would be the worst of all the complications I could face, and it was close but not the winner. In early October 2017 after I had been on chemo for about a month, I started having frequent urges to urinate. I brought this up at my appointments and of course they figured it was a urinary tract infection (UTI) and did tests to pinpoint the suspected bacteria. Every test they did indicated there was no infection. This is one time you wish there WAS an infection because there would at least be a treatment and explanation for it! Not only did I constantly have the urge to go, I also lost the ability, again, to keep it from leaking out. I had some pain when going, but it felt more like pressure in my bladder. It was getting worse and worse. I was having the urge to go about every 30 minutes. Try to sleep with that constant wake up call! They sent me to a urologist and I saw the nurse practitioner who, without touching or examining me in any way diagnosed “overactive bladder.” You gotta be kidding me. I didn’t believe for a minute that is what it was because you don’t go from normal to ridiculous, overnight. He gave me some samples of a medication that so completely dried out my mouth that I couldn’t function. It didn’t work either. I searched the internet for some insight into what was going on, and nothing seem to fit my symptoms, although I eventually convinced myself I had a prolapsed bladder. I didn’t. So anyway, I suffered tremendously for several months. If this was how I had to live, I didn’t want to live. Mentally, it took it’s biggest toll on me, far more than even the cancer diagnosis. I couldn’t go anywhere without searching for a bathroom constantly. My oncologist just couldn’t believe it was caused by the chemo because it was such a rare thing to happen.

I was so angry about the trip to the urologist that I didn’t want to go back, but my tortured existence finally got to me and I called for another appointment–but not with the caretaker I had before! It would be another 8 weeks before I could get in. My next appointment (with a different nurse practitioner) went much better, and she got me in quickly for a real examination with the female doctor I requested. She went into my bladder with a camera (pretty much pain free thankfully) and did see an area of inflammation. She said it didn’t look like cancer but wanted to do an outpatient procedure to go in and scrape the area for a biopsy. This happened in January 2018. The biopsy showed no cancer, just inflammation. It was about this time that my symptoms seemed to be easing up a bit anyway. She had me taking samples of a newer medication for active bladder, Myrbetriq, which did not have the drying side effects of the first medication. It didn’t bother me, but it didn’t change my symptoms when I started taking it and when I stopped taking it.  So, overall, I just got better with time. Eventually, the oncologist had to admit that it was probably due to the chemotherapy given the timing of it. Again, this is very rare, and not to be expected with Taxol and Carboplatin, but you never know what can happen.

It wasn’t until the last month or two of chemo that I started experiencing the promised neuropathy in my feet and fingers. I described my symptoms as “hot fingers” because that is what it felt like. They were hot at the tips, losing feeling, and looked as if someone bashed them with a 2×4 with dried blood underneath the nails. I took a picture of them to send to somebody but deleted them off my phone. Too bad. A friend commented on how horrible they looked so to spare people the sight, I painted them over with some tan fingernail polish–something I don’t usually use. I recovered most of the feeling in my fingertips but not completely and the ugliness soon went away. My feet went numb in the last month of treatment. It is not painful, just annoying, and this has not gone away.

Next up, life after chemotherapy…

Starting Chemotherapy

As with anything new, and especially dreaded, we all have our own preconceived perceptions about what an experience is going to be like. If you’ve never been or accompanied anyone to a chemotherapy unit, it’s likely you have a negative picture in your mind. I know I did. I pictured very ill people being tortured by this poison going into their system, and a lot of throwing up. Well, nothing could be further from the truth. Never once in 18 weeks did I ever see anyone throw up. Although in the picture I chose above, they do seem to be just a little too happy and put together for the chemo encounter.

Before picking the day of the week to start, my oncologist informed me that my “best days” would be five days after receiving the chemo. Since church was the only place I had to be every week, I chose Tuesday as my treatment day. The first time I walked into the unit was Tuesday, September 5, 2017, the day after Labor Day. It was quite crowded because all the Monday patients were there that had had a holiday the day before. I don’t care for crowds, so that made it a little more stressful. I was told to go sit anywhere but I think there was only one seat available. I wondered how the nurses would know who I was because I was new. Of course they have got these things figured out already as they have been doing it forever. So they knew who I was and I was warmly greeted eventually by a friendly and caring RN. Normally, the first thing they do is connect your chest port (as I mentioned in my last post) to an access tube. Although it is under the skin, and the skin must be punctured to connect the two parts, it usually requires a nanosecond of pain to endure before you are on your way. But, that is if everything goes as planned. As has seemed to be my lot in life lately, the nurse pushed through the access and nothing happened. “Well that’s strange–that never happens!” she exclaimed. She continued her pushing and apologizing for at least a half a dozen tries and by then it was quite painful. Add on top of that the anxiety I was feeling to begin with, the tears began to fall! I was embarrassed but my mind and body had reached the end point. She eventually got a connection after giving me a little rest. After that, blood is drawn from the tube for lab tests and you wait for the results. If your red blood cells and platelets are in good shape you are cleared to get your meds.

I was set to receive two drugs to kill cancer cells or keep them from reproducing: Taxol and Carboplatin. Taxol I would receive weekly and the latter, every three weeks.  My doctor called it six, three week cycles, or 18 weeks total. Taxol can cause some bad allergic-type reactions, so prior to getting the drug I would receive an infusion of diphenhydramine which is like Benadryl in order to avoid any trouble. After that, I received an anti-nausea drug infusion which worked great not only the day of treatment but for several days after. By this point I am getting a bit sleepy because of the Benadryl. I’ve now been there for an hour to hour and a half and have yet to receive the drugs I came to get! Those are the final drugs for the day and, in total, that can take another hour to an hour and a half to receive. I feel nothing while receiving them–they might as well have been saline. As I left the unit I thought that wasn’t too bad even though I was still sleepy from the Benadryl. I went home and took a nap.

Taxol is the drug that causes hair loss. It is not gradual. One day you have hair and you can pull on it and nothing happens; the next day you pull on it and it all comes out. It took 3 weeks and 2 days before that day occurred. I had already been to a fine wig shop in town and was ready for this day, if anyone is ever ready to have their hair fall out. Rather than try and hold on to it (and look rather sick and pathetic in the process–my own interpretation) I chose to just have my head shaved and get it over with. A good friend came over to do the deed–I was grateful I didn’t have to go out and have it done. I always found it easier to jump into a pool rather than enter inch by inch. The wig was okay but I looked different because there is no way to replicate my real hair. I wore it to church but I always felt a little phony, that’s just me. Out in the world I wore my self-described “cancer hat” which I bought at the wig shop (longer in the back) or a regular ball cap and felt much more comfortable about being seen.

My next blog post will be about complications I experienced, both expected and unexpected!

 

Regrouping

Since I took my first professional job in 1981 when I moved 2 hours away from family to live by myself in a town where I knew no one, I have been a pretty independent soul. I can do most things for myself–with the possible exception of fixing the lawn sprinklers  because it requires the hand strength of a man. And moving furniture. Other than that, I’ve always had it covered.

Arriving home weakened after major surgery put me in an unfamiliar situation of having to depend on others for help. Although it was foreign to me, I knew there are times in life when the humility to depend on others for assistance is required. I didn’t have to ask my sister Mindy for help though, with her it was a given. She arrived from California just in time to accompany my brother in picking me up from the hospital. She immediately went about getting things I needed from the store, procuring a wheelchair loaner so I could get outside and go for longer distances than I could under my own power and most importantly just talking about everything I was going through. No filter needed in conversations with Mindy. The sisters from church had arranged to have dinner brought in for us for several days. I was hungry now that I was home, and some of that food we received was just over-the-top delicious. My daughter and granddaughter arrived about the time Mindy was going home and stayed for a week. There are no words to describe the gratitude I felt for all who contributed to my recovery phase. They were the actual hands working for God to answer my prayers.

Following major abdominal surgery there are bound to be changes to your body. I would soon learn what the “new normal” entailed, and how to adjust my life accordingly. This mostly involved my digestive system since I had part of my colon removed. In the first few weeks at home I would have periodic lower abdominal pain that would be intense for an hour or so and then go away. I’m not sure what caused it, but I could imagine in surgery the doctors cramming everything back into my body before suturing me up, and what that could do to me. I have no idea how that is done but this is what I pictured, and decided this was why I was having pain. Thankfully, after a couple of months this stopped. Worse, however, was the unpredictability of my bowels. I could go days without anything and then other times found myself running to the pot all day long. I was afraid to go out to eat or even to church. This complication has improved over time.

When you are discharged from the hospital following any abdominal surgery the doctor will prescribe a blood thinner (Lovenox) for you to take at home to avoid complications of blood clots that would lead to a stroke or pulmonary embolism. Much to my dismay, however, this is not a pill but an injection. The prescription is given in the form of a syringe. There is a reason I became a dietitian and not a nurse! I don’t mind getting shots but I don’t want to give them, especially to myself! This was one of the hardest things I had to do every day for about 3 weeks. I am confessing right here and now, I did not take that last shot–I just couldn’t do it any more and figured I’d be okay.  I was.

This recovery interval was also a time I was forced to confront my future and make decisions. Was I to go back to work or retire? Did I have enough money to retire? Could I work while going through chemotherapy? What were my chances of surviving? What about all of my dreams for an idyllic retirement? Was I a fighter or a “dier?” (I made up that last word).

I am not a fighter. I don’t take on causes because I never see myself as a victim. There is nothing in this life that has been withheld from me if I was willing to go after it. Bad things happen to good people, which is just part of this mortal experience. I related with a recent “Music And The Spoken Word” which described resilient people, or “survivors” as sharing certain traits: “They are optimistic, selfless, and spiritual, and they accept what can’t be changed.” (Music And The Spoken Word, September 9, 2018) So I may not be a fighter but I figured out I am more of a survivor.

I decided to retire since I was fairly well-positioned financially and didn’t want to work another 4 years only to have the cancer come back and not have any retirement. It would also allow my employer to hire someone to take my place and not leave them in limbo. I didn’t want to have to work through chemotherapy. I would stay put and not move to the Pacific Northwest where I didn’t know anyone except my daughter and her family. I had a good support system here. It felt good to make those decisions and move on.

I went to my first appointment with the oncologist two weeks after my discharge from the hospital. I was dreading this appointment. My daughter and granddaughter accompanied me which was comforting. He explained in great detail the treatment, the possible side effects and the odds of survival. He discussed drug trials I could get involved in during chemotherapy. I was initially all in with that, until right before beginning chemo treatments they said I had to have scans and blood tests, and wanted to put off the start of chemo until after that was done. Then I said forget it, I wanted to get this going.

A week or so before starting chemotherapy I was scheduled to have a “port” surgically placed in my chest which would facilitate easy access to my veins, thereby eliminating the agonizing process of trying to find a vein to poke each visit. This took the better part of a day in outpatient surgery but was well worth it. The port is just under the skin with no tube or anything hanging out. It was uncomfortable sometimes at night lying in bed on my side when it seemed to get scrunched a bit, but overall I did not feel it. With that taken care of, I was now ready to embark upon the next, and scariest phase of my treatment–chemotherapy.