Three Month Follow-up with My Oncologist

As I said in my previous blog post, I have had some struggles recently. I have been trying to write about what has been going on, but it has been challenging to put it into words. I am still not prepared, but there may never be a good time, so I may as well start to talk about it.

I had a check-up with my oncologist back on the 7th of January. I didn’t write about my appointment right away because it was an unusual appointment, not my usual, “Yes, I am doing fine on my medication. My sleep is improving, as I am averaging just one night a week, where I am still awake at 5 or 6 am, instead of several nights a week. I am still fighting fatigue…blah, blah, blah…”

My bloodwork has improved to where all of my levels are normal except for my red blood cell count, it’s still low, and unfortunately, it may be my regular reading from now on. It’s not terribly low at all, 4.18, where 4.20 to 5.40 is a normal range. But being even slightly low, I can feel it, so hearing that I might not ever be in the normal range makes me terribly sad as I hate feeling this way. I asked if there is anything I can do, that some cancer patients say that they take iron to fight the fatigue. My PA said that I could take iron, but she cautioned me that it could upset my stomach, so I should take it only every other day to start if I decide to try it. She also said that she had heard that there is a liquid version that might be easier to take, but she hasn’t seen it, so she wasn’t even sure where I could get it. I am on the fence about taking iron, so for now, I am not doing it.

My PA explained that one of the essential readings they are looking at when I come every three months is my Hgb or hemoglobin. Low hemoglobin levels usually indicate that a person has anemia. There are several kinds of anemia: Iron-deficiency anemia is the most common type. This form of anemia occurs when a person does not have enough iron in their body, and it cannot make the hemoglobin it needs. High Hgb is known as polycythemia. This means you have too many red blood cells. Polycythemia vera is a cancer of the blood in which your bone marrow overproduces red blood cells. With polycythemia, a blood test also shows a high red blood cell count and high hematocrit. So low or high Hgb would be bad for me, it would mean I am either anemic, which was also a concern during my chemo treatments, or I have cancer in my blood. My Hgb is a little low, only one point from the lowest acceptable level, but nothing to worry about for now.

Now for the tough part…for most of my appointment, I cried a lot. It was hard to talk about, even with my PA, whom I adore. I kept looking away from her while I was talking and crying; I was embarrassed. Why was I crying? It was a lot of things, but mainly the fact that I have had an overwhelming feeling of guilt recently. Why do I feel guilty? As it is, it’s hard being a cancer survivor, and for me, it is tough because I have always had a great deal of empathy for people, but now it includes other cancer patients. Recently quite a few people I know, through various ways, are dealing with having a cancer recurrence. I feel guilty because I am still doing well; I am OK for the most part. They are experiencing my greatest fear, and I am feeling guilty because it isn’t me. It is also a reminder that my breast cancer was incredibly aggressive, and it could return at any time.

It is easy for most to say, “don’t live in fear, don’t worry about it,” but honestly, someone who says that to me clearly doesn’t understand how horrifying it is to go from barely needing to see a doctor to countless scans, blood draws, chemotherapy, radiation and four surgeries in a matter of fourteen months. All three of my doctors, my cancer treatments, everything I went through saved my life without a doubt, but it also damaged me in every way. I don’t know if I will ever be myself again, many cancer patients tell me that I won’t be, but I am doing everything I can to defy that future.

At the end of February, I will reach the second anniversary of my first appointment with my surgeon when I was diagnosed with breast cancer. In many ways, I can’t believe that it has been that long already, and in other ways, it feels like it has been a lifetime.

Thank you for being here; it helps to know that people care enough to read my blog, that the information I am sharing helps other cancer patients and their caregivers, and it helps me in more ways than I can say.

Reality of Chemotherapy

Mood: Sad 😫

I know I have written about the side effects I experienced while going through chemotherapy treatments and the after effects, so I won’t go into the details about all of that again. You can read that entry here if you haven’t read it.

This is a hard entry for me to write, to show you a part of me that breast cancer and chemotherapy have taken from me. Anyone that knows me well, knows that I take pride in my appearance. I knew from the beginning that I would lose my hair, so I bought a few wigs early on in my journey and I promised myself that I would not go to a doctor’s appointment or out in public without a wig and at least some makeup on. I didn’t want people seeing me and feeling sorry for me, and I still don’t.

I have an update about my two big toe nails….I had to cut them both almost completely off and quite honestly, I cried…this newest development is devastating to me!

My sad toes, with medication applied!

This is yet one more part of me that I have lost to breast cancer and chemotherapy. First it was my beautiful long blonde hair, then my eyebrows and eyelashes, then the rest of the hair on my body, yes, all of it, then it damaged my finger nails and now, losing my toenails. Luckily, it looks like my nail beds were growing under my damaged toenails, my toenails had almost completely lifted away from my nail beds, so my toenails should grow back healthy and normal, but it will take time. My hair, eyebrows and eyelashes are growing back now, but slowly. I will eventually take a picture of what my hair looks like now and update you. Currently I am waiting for it to fill in a bit better as I have a big patch in the front that is not growing at the same rate as the rest of my hair and I have noticed that my eyebrow on the same side is behind in its growth as well…no clue as to why.

So at a time when I have already been feeling ugly and less than feminine, losing my toenails and worrying about what they will look like by my trip in May, has not been helpful. I know that the way I am feeling about how I look will eventually pass as my body continues to fight to get me back to good health.

After Chemo Treatments Are Over

Mood: Depressed 😫

A few days after finishing chemo I started going through some fairly serious depression. I know that it doesn’t make sense…why would I be so depressed?? I made it through one of the most difficult parts of my treatment, when so many patients don’t for one reason or another, but I finished and on time as well. But once you are done with chemo the realization sets in that you are not done, that there are still several months to go. It has already been 9 months since this nightmare began and it doesn’t feel like the end is near….but it is…😟

My depression has been caused by several things and until now, I haven’t felt like sharing what I have been dealing with. I needed to wait until I was feeling stronger mentally and had turned a corner and was starting to really feel better. I have been going through physical and sensory changes as well as all of the emotional issues that go along with being a cancer patient.

Both of my big toe toenails have changed in texture, color and until recently were oozing a clear liquid from under my nails. Both of the nails are healing now, thanks to some ointment I am using, but I have been very much afraid of losing one or both of them for the last month. I could still lose both nails but I am doing what I can to keep that from happening. The toenail issue is just one of many Taxol side effects that is fairly common, but waited to effect me until the last few weeks of chemo.

I have been using a gel to help me keep my eyebrows and eyelashes and up until the last few chemo treatments it was working fairly well. But now, even though chemo is over and I am doing as directed, I have lost all but three eyelashes on my left eye and all of my eyelashes on the right eye. My eyebrows are slowly falling out as well and it seems that there is nothing I can do to stop it. I look more like a cancer patient now that I am done with chemo, than I did while I was at the height of my 4 1/2 months of treatments and it makes me sad…..I can barely look in the mirror.

I have also been dealing with some neuropathy in the finger tips of both of my hands. Now that I am three weeks out from ending chemo it is getting better but I am still dealing with it on a day to day basis. The sensations I am feeling in my finger tips should eventually go away with time, the sooner the better, as it is annoying to say the least.

The fatigue has been relentless, it doesn’t matter how much I sleep or rest, I get tired doing the simplest things and it has been a constant battle. When my fatigue was at its worst I would have my entire body hurt just from walking up the stairs in my house. The fatigue caused a big part of my stress just realizing that at this time last year I was running for 30 minutes straight a few times a week and running 10 flights of stairs a few times a week as well.

The steroids I have been given for the last 4 1/2 months caused me to gain weight while going through chemo. Yes, it is better to gain weight then lose it during chemo, but weight has always been an issue for me for most of my life. The weight gain was just another side effect that helped my depression get as bad as it was. I feel awful walking around with an extra 12lbs on my body but I of course am happy that I am alive and that I completed all of my treatments.

Lastly, chemo brain is a very real side effect of chemo treatments. At first I didn’t think I was suffering from it until a Saturday afternoon came along where we had to go back to two stores while out running our errands. I had forgotten to put things on our list that we needed and I thought I had marked everything off that we had on our list only to find that I had skipped them entirely and we left the store without them. That Saturday was a very rough day for me as I am usually so organized but it was obvious that I was not in control of my mind.

So let’s end this blog post on a positive note……My hair is starting to grow back! It is fine, light colored and in just a few areas here and there, but it is coming back in and it actually started growing a few weeks ago before I finished treatment. I am happy to say that the fatigue is improving, slowly, but improving none the less. I am hoping to start walking and building my strength back up very soon, and I will then start working on losing weight and getting back to where I was. Last of all, I realized early last week that the chemo brain is gone and I that I am feeling like I am in control of my mind once more and that I am truly starting to feel like myself again. πŸ’•

Ahhh…Sleep!

Mood: Happy  😁

I am feeling sooo much better today! Getting a good night’s sleep makes such a difference for me, especially these days. I wish I could sleep this well every night, but it’s usually only a few times a week.

Good, quality sleep is so important while fighting cancer. I am on a few cancer apps and I see more often than not, that cancer patients have a hard time sleeping.

Sure, resting is easy, most of the time, but getting enough sleep is difficult and at times, impossible.

 

Bloodwork

May 30th, 2019

Mood: Hopeful 😌

I am still feeling good! I went to my oncologists office this morning for bloodwork. A few things are high and a few are low, but nothing to keep me there to see the nurse.

I am still not used to the short hair but I won’t have it for long after my treatment next week. There is no telling when my hair will start to fall out but it will, there is no avoiding it.