Tag: complications

It’s not really true that it’s over. The facts of being a cancer patient.

I saw a post from a friend of mine that really touched my heart and I want to talk about it. This friend has a lovely daughter that suffered from cancer and then a relapse and is having continuing health issues that are saddening and frustrating. It’s as if the initial battle is over but the long-term war is still going. Worse yet, my friend has the impression that no one understands or cares.

Well, I’ll tell ya right now that I understand AND care! This is a firsthand testimonial for me as well. I am a two-time successful cancer warrior with all kinds of ongoing health issues and consequenes. I am grateful to report that I successfully battled both hodgkins lymphoma and primary cns lymphoma. Yep that’s right, whole body cancer and brain cancer, all in a four-year time span. And yet, I am very grateful to report that I still get to be here to crab about it. That is awesome! Who thought I would still even be here in as recently as two years ago. Yep, definitely a big win. Also, I have decided to turn my crazy experiences around and create positive things out of them like my Chemo Peeps group on Facebook. I have decided to use what I went through to help others and pick up the slack for everyone else who is potentially letting them down. I am totally in!

As far as my poor friend, I completely get how if even the acute battle is over, the ongoing war continues, probably forever or at least five years or so. This is why I am afraid to even use the word survivor because I think it implies a kind of permanence that is not really realistic. Heck, I am not even a total of five years out from my first cancer, much less the second. Wow that is a lot to think about. I have all kinds of ongoing medical issues that are the result of my cancers and the treatment for my cancers.

Let’s rattle off a partial list. My thyroid was destroyed with my first cancer treatment, which was not picked up right away until I was almost comatose from sleepiness. That is an ongoing juggling battle to titrate the correct dose so I can remain upright and not have my hair and skin get too dry and fall out. I now have a recurrence of my sleep apnea due to the crazy thyroid and all the fluid weight I retained after all the steroids. Hello cpap my old friend. I have ongoing neuropathies and myalgias that are very unpredictable and sometimes make it hard to move any given day, but I press on anyway. I have all kinds of side effects from the Keppra I was put on at the time when my brain was so full of cancer it was seizing uncontrollably and put me into a coma. We are talking Keppra rage, weird neuropathies, tingles in all the wrong places, crazy reflux, etc. Thank goodness I am on less Keppra now so the side effects are less, but not absent. Realistically, I know I am always going to need it though because I have enough scarring left in my brain because of the treatment that that alone can cause seizures even though the tumors are gone. My diabetes has gone a little nutty as well but I am busy wrastling that back under control with additional medication.

Let’s also talk about the left over emotional and psychological consequences. Yes. Yes. I have a certain amount of ptsd and mistrust after all my medical craziness. I get the slightest twinge and quickly assume the worst, before I try to self-calm and re realize that it is not likely. It takes me a minute though. I have had to go back on my Prozac for this and resume therapy to manage my emotional consequences and help me maintain any sense of calm.

I also get bothered by the fact that as a patient, you essentially have the perception that you have become boring after your particular physician’s part of your treatment is over. It’s as if their little tunnel approach excuses them from caring significantly about you afterward. Again, I am not saying that this is intentional, but I really feel that they have to be better about maintaining a vested interest after your acute treatment is over. It is by far not over for you and they still make you follow up at inconvenient times for at least five years afterward. I feel like this should mean more to them.

The bottom line is, yes, it is correct that the long-term war is still ongoing even after acute phase treatment has been completed. It does matter what you are still going through. Many people are unable to understand this, but, I have to admit, I don’t really need them to or want them to. I don’t wish on anyone what I have been through. This is not an experience I want to share with anyone. It is terrible and draining and awful. I am going to choose to support others and be there if they need me and share stories and support as needed. That’s all I can do at this point. We all need help sometimes regardless of what the issue is at the moment. I hope we can all try to be there for each other. Have the best day that you can and never stop advocating for yourself. That’s all for now.

Dr. Katz

Chemo is done and the party still hasn’t started

My last day of chemo was June 9th, 2021. It was a day I looked forward to for a long time. I thought for sure that it would be the beginning of everything being all right again. I thought I would feel different. I thought the sun would immediately shine brighter and the birds would sing louder and all would be right with the world. I even thought that somehow the last chemo session would be easier, just by knowing that it was the last one for awhile.

To tell you the truth, I could not have been more wrong. For one, the last chemo was no less intense and grueling than all the others. In fact, it was worse than the others because the cumulative side effects somehow intensified and lasted longer. I didn’t feel better immediately either. Surprise surprise. I was still tired all the time. I still had fatigue. I was still swollen. My gi tract still didn’t work and I bloated like a nine month pregnant woman every time I ate to the point that I could hardly breathe. I couldn’t push a grocery cart by myself without getting so winded that I had to stop and rest. I had ptsd every time I had the slightest twinge, wondering if this time the symptoms meant something like they did last time. The sympathetic head tilt looks didn’t instantly stop after chemo was done because I was still bald, which was a visual hallmark of continued illness. I had multiple organs try to fail, some still are trying, from chemo side effects, which brought on many more complications. On top of all that, I was struggling, and still am, to rescue my business from everything that had happened during the pandemic and when I was actively sick. It was all crushingly disappointing.

I think the biggest problem is that I wasn’t mentally prepared for any of this. I just wasn’t expecting it. My logical self should have assumed that it was impossible for everything to right itself immediately. However, my chemo patient self was ready for any cheerful fantasy to be true instead. I had a lot of help with this misconception. At my last chemo appointment and doctor’s visit, everyone acted like a huge celebratory gong was to be rung and that it would be all smooth sailing from there. Congratulations flowed all around, uplifting my mood. I can remember stumbling to my car and suddenly breaking down into tears of joy as We Are The Champions came on the radio. I understand the focus of that final visit was to rejoice, but I think it would have been helpful to have a small dose of realism injected in at the same time. I am not talking about not celebrating. I am just talking about balancing the good end of treatment news with some tips about potential complications, what to expect, and how to realistically move forward. I think it would have saved me a lot of frustration and disappointment. I understand so much better now from experience and I have definitely had success in making my way post chemo and I am very grateful for how I am doing now, but I feel like the journey could have been a little less scary with some prior warning.

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