Tag: Side effects

There is so much to say

Buddha Quotes positive attitude

Hello there! Long time no write. It has been an interesting month to say the least. My head has been spinning with a little bit of everything lately, to the point that I didn’t really know how to put into words that would make any sense. I am going to give it a shot now.

First and foremost, I feel so grateful just to be alive. I remind myself to take note of this every day. It was not guaranteed by any means. 2021 was just a shit show of one inevitable thing after another, not to mention trying to be vanquished by lymphoma. Well! I showed that stupid cancer who’s boss! But, almost a year later, I am still not quite me yet. There have been so many side effects and setbacks and I just had to sign a different consent form that added about 6 new pages of warnings and potential complications for chemo that I already had. But, I just keep on taking the hits like a prize fighter and keep on plugging.

Second, I am so grateful that my husband is alive. I was barely a couple feet in the rearview from chemo when he tried to croak and had multi vessel open heart surgery, without having any high cholesterol or anything! Talk about terrifying and out of the blue! Helping him rebuild both mentally and physically has been one of the greatest challenges of our lives. If we allow it, the what ifs could easily overwhelm us. I just keep saying no!

Third, I am grateful that my kids are healthy, at least physically. Let’s face it. Almost losing both parents in one calendar year hit them like a ton of bricks, even though they tried not to show it. They wanted to spare our feelings and not have us worry or feel guilty. Too late for that. I watched their struggle to process and still give themselves permission to carry on with their lives. There is no more hopeless feeling than knowing your kids are fighting a battle that you just can’t help with or fight for them, but that is partially caused by you. I get it. Feeling guilty does not solve or remedy anything. I just can’t help it.

Fourth, the ongoing business struggles between the pandemic and the after effects of me working less during my cancer treatment and trying to help when my husband was ill are still catching up with me. Not a whole lot I can do about that besides keep working my ass off. On the other hand, I feel very fortunate to still have and own my business after everything that has happened. I’ve always said that I am not in it for the money anyway…lol

Last but not least, there IS something that really keeps me going lately in a good way. Want to know what it is? It is my positivity. What do I mean by that? Well, I DON’T mean that I wear rose-colored glasses and have unrealistic expectations that set me up for failure. I DON’T mean that I skip around singing like Snow White all day. I mean that I am still able to help people every day, no matter what has happened. I truly believe that my positivity has impacted people all over, even in some of the toughest, most defeatist cases. I feel like it is really working and spreading to everyone around me. I truly believe that I have been able to be the metaphorical flashlight that I was aiming for to lead other people through dark times. I realize that I haven’t been able to get to everybody, but I will never stop trying. I think the key thing for me to remember is that I am keeping positive and advocating and pushing because I want to, not from some sense of duty or obligation.

So, let me bottom line it for you. There is a lot of crap still going on, but I am staying positive! Join me will ya?

Dr. Katz

It’s Just a Little Tougher to Bounce Back Nowadays

Wow. I have to say that having cancer has brought about more change than I realized. I think I tried to partition the whole experience in my mind as a discrete entity with a finite beginning and end. It somehow made it easier to trudge through with a positive attitude when visualizing an actual light at the end of the tunnel.

After the end of chemo, I am slowly realizing that, while that visual was helpful, it was not necessarily realistic. My journey did not abruptly end when chemo did. As I have discussed before, there have been many after effects and pitfalls since and I am learning about new ones every day. Each one I try to embrace, while fighting the little chip on my shoulder that I have to deal with it in the first place.

Most recently, I got my first actual illness outside of chemo in the first two and a half years. Yes. It’s true. Now that I think about it, one little-publicized actual positive side effect of the pandemic has been that we all have had less of the regular sick season viruses, etc because we have been wearing our masks, not doing as much, washing our hands, trying to avoid sick people, and not touching our faces as often. Granted, some of these precautions (like hand washing) should not have been new additions to our routine. Nonetheless, they have all contributed to less routine sickness. Anyway, my point is, that I haven’t really been sick in over two years. So, when I got this crappy gi virus, it really through me for a loop. Number one, believe it or not, I wasn’t really used to being sick. ( I get it. That sounds ridiculous considering I just went through cancer and chemo.) Number two, I was that much more stressed out about the repercussions of missing work because the economic strain has been significant from all the previous missed work. Number 3, it hit me a lot harder than I remembered from previous illnesses. Number 3 is what got me the most. I am just not bouncing back as fast I think I should be. There are a lot of reasons why that could be true. One could be my loss of perspective on being sick outside of chemo. Another could be that chemo has left lasting side effects that keep my body from fighting off sickness as well. My kidneys are not working as well so I get dehydrated more easily. My thyroid is still dead so I get fatigued and my metabolism is altered. The list goes on. You get it though right? There are plenty of reasons for me to have trouble bouncing back from regular illness. So, I shouldn’t worry, obsess, and beat myself up about it. But, alas, I do. I get distracted and instead of doing things to help myself get better, I waste time feeling guilty about who I am letting down this time, as if I haven’t left enough people down with all the cancer stuff. It’s kind of a vicious cycle.

So, here’s the thing. What do I do about it? The fact of the matter is I am the only one that can do something about it. NO one is making me feel this way but me. The guilt is all mine. I have to make the decision to accept this one more thing about surviving cancer. There will be changes that last long after the cancer is gone. They are not my fault. They are not my punishment for things done wrong. They just are. I can chose to move forward…or I can chose to be held back by things that I cannot control. I say forward it is. Otherwise, my recent win was all for nothing.

Dr. Katz

It’s Not Over Just Because Chemo is Over

Wow! There are so many things they don’t tell you about being a cancer patient! When I say “they” I am referring to a proverbial all-inclusive group of people that includes everyone that is in charge of your care and even other patients who are unable or unwilling to share their experiences. I am learning a lot as I go and I am convinced more than ever that it is my mission to pass on what I know or have experienced to all of you. I am still determined to be the flashlight that helps guide patients through both their cancer experience and what comes after.

So, here is what I have realized. It is not really over until it’s over. What the heck do I mean? Let me explain. Most of us logically assume that when the last drop of chemo has coursed it’s way through our blood stream and the most recent scan confirmed that we are cancer free, at the moment, that we are, in fact, done! Yay! Hooray! Whooo! It is time to party, right? That’s what I thought. I really truly thought, or at least hoped, that the moment I got that final good news that this warm and fuzzy feeling of overall cleansing and good health was going to wash over me, my energy and health would be renewed and I would be ready for anything that came my way! Nothing could have been further from the truth. Now I am not blaming anybody. Nobody told me that that was going to happen. I am solely responsible for my own rose-colored glasses personal patient vision. However, nobody counselled me to the contrary either. I was just kind of left to figure it out after my perfunctory but heart felt congratulation speech from my health care team.

Here is what really happened. I got my good news. I was elated at the moment and kind of skipped out to my car( and then got short of breath from skipping..lol). Then I got into my car and, ironically, We are the Champions by Queen came blasting on the radio. I then proceeded to sob hysterically for about 20 min before driving home. I want to believe that the tears were all happy, but now I am not so sure. My mind started racing with all kinds of different thoughts ranging from yeah, I’m free to omg what do I do now and who is going to look out for me? My head was completely spinning. I had to take a minute before my head was clear enough to drive home. I started to realize that this was not really over. I had the next five years of my life mapped out with repeat scans and follow ups. Was it going to really be over then? What if I got some weird symptoms or twinge in the wrong place? Should I ignore it or should I worry because something else might be wrong?

I spent some quality time trying to talk myself down from the ceiling and rationalize the fact that I would need to give myself some time to be able to process information from my body normally again. That lasted all of a few minutes before I was on the phone to my therapist, making sure that I had regular appointments scheduled for the next several months. I was not going to be able to do this alone and I wasn’t allowed to restart my anti depressant for another month or so.

Ok, so now I had my therapy appointments in place. I rebooted my calm app on my phone. I reached out to my friends and fellow patients. I felt like I was doing everything right, or at least what I could do at the moment. Everything was going to be ok right? Nope! Then, the later complications of chemo started rolling in. My liver and kidneys took some hits and had to recover and my thyroid died completely. All the symptoms I was having that I was trying to assume were psychosomatic were actually real! Some of the stuff could have actually killed me! Thank goodness that we have modern medicine and options for all of them, but still scary nonetheless. There was no room for relaxing! There WAS still stuff to worry about! I knew it! My doctor said that some of these complications and side effects could be a factor for years afterward. Fantastic! I understood going in that there was going to be a risk trade off in exchange for curing my cancer, but on some level, I don’t think I fully understood just how significant the risks would be. I don’t think any patient does.

Here is where I think we need to do better for patients. We need to do better than handing someone a stack of papers several inches thick to read over and sign. We need more than just one chemo teaching session. We need to counsel patients that complications are real and that we need to have a reasonable level of vigilance after treatment is over. We need to recognize that PTSD is real and affects people that have experienced any kind of trauma, whether it is casualties of war or cancer. There needs to be a plan in place for those kind of things BEFORE they happen. We need to shape patient’s expectations for their treatment and for themselves BEFORE things happen. We need to give the a glimpse into what can happen and what they can expect and let them know that we have tools to address all of it. I have to believe that being proactive could potentially save a lot of suffering, both physical and mental, for patients. It has to be better than being behind the eight ball and struggling to deal with all of these issues when they are already full blown and both your mental and physical energy is already depleted.

Here is the bottom line. I am proposing a new plan. First, start with detailed one on one counselling before treatment starts for as many sessions as necessary with the key goal of shaping expectations and making preparations. Second, assign each patient a mentor who has actually gone through the process that can be a touch stone throughout treatment and beyond and who can offer encouragement, and more importantly, guidance and reassurance as things happen. Third, anticipate the possibility of PTSD, complications, and side effects after and during treatment and try to prepare the patient as best as possible. Set them up with therapy from the beginning. Start them on medications if possible during treatment. Be vigilant for side effects and try to catch them early. This all sounds like common sense but I am willing to bet that it is NOT common practice. I truly feel that implementing these few extra steps would have a tremendous positive return on patient recovery and outcomes that would far outweigh any additional healthcare costs incurred. I guess it boils down to what the true goal is : patient survival in terms of numbers versus patient survival in terms of whole health, mental and physical. Last time I checked, we are all more than just a number.

Dr. Katz

Seventh Inning Stretch

so close and yet so far

antsy even though I know it’s necessary

side effects more annoying

emotions pouring out all over, unchecked

confusing my caregivers

having trouble convincing then that it’s ok, I’m ok

I really do understand what’s going on

I’m not falling apart or anything

just a few crumbs breaking off here and there

just anxious to be whole again