Musings by OZ

For the past few weeks I have had a bad case of the collywobbles. The word “collywobbles” is a British word that means intense anxiety, or a feeling of fear, apprehension, or nervousness.  The same word in India is defined as having severe gastroenteritis of unknown etiology, characterized by severe colic, vomiting and diarrhea. I’ve been feeling anxious without the severe diarrhea, so thats something to be happy about, and the etiology points directly at cancer so the collywobbles that I have are definitely of the British variety. The benefit of having the British collywobbles as opposed to the Hindi collywobbles is that you just don’t give a shit!

Over the past few years or so I have had to deal with varying degrees of collywobbleness because of the multiple cancers that I have had. Lymphoma as well as Thyroid cancer both affect hormones dramatically and this tweaking of hormones unsurprisingly can lead to depression. It’s not just cancer itself that brings on depression it is also the treatments and the medications, for example, the six months of chemo that I had a couple of years ago totally screwed up my body causing massive fluctuations of hormones sending me on a rollercoaster ride of crazy highs, stomach dropping lows and unforeseen twists and turns, with a touch of the Hindi collywobbles as an added bonus.

There is all kinds of fun stuff that a cancer patient has to endure that has the potential of bringing on depression. Waiting for test results is always a bummer, a cancer patient spends a lot of time waiting for the next test or biopsy result to arrive, and let me tell you waiting for results sucks! I always feel lost and useless when I am waiting to find out the result of a test and I tend to disappear into myself and hide from the world in a blue funk.  Though these periods of waiting are really difficult I have always tried to remain optimistic while I wait but it is arduous if not impossible to remain hopeful. As hard as you may try to think positive thoughts your mind eventually heads down that dark road of pessimism and merges onto collywobbles highway.  The longer you wait the more time you have to excogitate worse case scenarios. Time drags by slowly, days feel like weeks and hours feel like days. When I received my  initial diagnosis I was only told that I had Lymphoma, I had no idea what kind or how bad it was. I had to wait a couple of weeks to learn that it was stage four. During those weeks of waiting I tried to keep a stiff upper lip as they say, not sure why they say this so I will look it up………. The phrase is most commonly heard as part of the idiom “keep a stiff upper lip“, and has traditionally been used to describe an attribute of British people in remaining resolute and unemotional in the face of adversity. So there I was, attempting to keep a stiff upper lip but I really couldn’t concentrate on my lip because I was too distracted by the fact that I had cancer. I was pretty well convinced that it was taking so long to get the results because I had some rare form of cancer and they didn’t want to ruin my day by calling and telling me I had only a few weeks to live so why am I trying to maintain a rigid lip when I am staring death in the eyes. I gave up on the lip and concentrated on researching lymphoma on Google.

I have learned these past few years that Google is not your friend when searching for potentially terminal diseases. No matter how long you have to wait for the final diagnosis it is not a good idea to pass the time by searching google for the disease that you have been diagnosed with. After my initial diagnosis I spent some time researching lymphoma and it scared the shit to of me, there are so many different types of the disease and I had no idea what I actually had, searching the images of  lymphoma patients was definitely not a wise thing to do.

There are so many other things that a cancer patient deals with that has the potential to lead to collywobbles. Bills, pages and pages of bills that accumulate at an alarming rate. Almost every day a new bill would show up in the mail and just when you think you have received the last one, boom another one shows. The bills that show up may as well be in a foreign language, a simple procedure or biopsy will produce a 14 page bill that is indecipherable. I’m pretty sure at the very least that you would require a secret decoder ring to correctly interpret a health insurance bill. You reach the point that you don’t even read the bills, I am confident that this is what the insurance company is hoping for. Either you have the money or you don’t so you write a check or throw the bill on top of the stack of other unpaid bills and try and forget about it.

Cancer patients especially Lymphoma patients are always looking over the shoulder waiting for the cancer to return because it is usually considered treatable but un-curable. Less than six months after I was told I was in remission I glanced over my shoulder and boom I was diagnosed with the secondary disease of thyroid cancer. To cure my thyroid cancer I had my thyroid surgically removed as well as two parathyroid glands.  Parathyroid glands are small endocrine glands in the neck of humans and other tetrapods that produce parathyroid hormone. After removing the parathyroid glands the doctor  chopped them up and seeded them back into my neck with the hopes that years from now they would start producing parathyroid hormone. A couple of months later I enjoyed a week quarantined in a dirty hospital room so I could swallow a magic capsule of Iodine–131 (¹³¹I). The thyroid gland absorbs nearly all of the iodine in your body so when the capsule is swallowed  it concentrates in thyroid cells and the radiation destroys any residual thyroid gland material as well as the cancer cells that may not have been totally removed during the surgery. Because I had my thyroid completely removed I will be on medication for the rest of my life, I have to take synthetic thyroid medicine that helps restore thyroid hormone balance, I also have to take 2400 mg of calcium every day because the parathyroid controls your calcium levels. Even after a couple of years of taking synthetic thyroid meds I still don’t feel quite normal.

This is the special radiation proof container that my  Iodine–131 (¹³¹I) capsule arrived in and the warning that was taped to my hospital room door that kept everyone but the geiger counter guy away.

 

Since our return from our trip to the US I have been slowly sinking into the quagmire of depression.  For me just identifying that I am depressed is a huge step, the next step is to try and identify what it is that is the cause of this depression. I think by nature the last thing we want to acknowledge to ourselves is that we are depressed. To admit depression you have to admit weakness, why am I not strong enough to deal with the shit that life throws at me, why am I so weak, why me? Its easy to feel self doubt or self pity but incredibly difficult to do something to bring yourself out of that funk. It’s difficult to admit weakness especially mental weakness but if you are able to do this you have at least taken the first couple of steps down the road back to normalcy.

I don’t like taking pills, especially meds for depression because they tend to turn me into a zombie so in lieu of taking pharmaceuticals I choose other safer options. I don’t do it as often as I should but I have found that meditation really helps. Just sitting quietly for 15 minutes a day and attempting to clear your mind really does wonders for the brain. I say attempting to clear your mind because it is sometimes impossible to accomplish. Even if you are unable to keep a clear mind to just be able to sit quietly, close your eyes and concentrate on your breathing is a powerful tool. Losing myself in a good book or watching a movie allows me to disappear for a while, music is also a wonderful distraction. The last thing I usually want to do when I feel the funk is to exercise but I have found that if I can get my ass up off of the couch and go outside for a walk or a bike ride it really helps tremendously. 

I was excited to return to Warsaw after our trip to the US because I knew that I would being seeing a doctor and finding out what cancer treatments I have in store for me. I was hoping that as soon as we returned I would see a doctor and start my next round of treatment but it hasn’t gone quite as smoothly as I had hoped. Before our trip to the US I had been going to a wonderful private hospital in Warsaw. I had a PET scan as well as a biopsy surgery to have a lymph node removed for testing and some blood tests. The results from all of the tests confirmed that my Lymphoma had indeed returned. While I was in California I saw my Oncologist and shared the results and histopathology from the biopsy, based on these results my doctor confirmed what the Polish doctors had told me and put together a report that included suggestions for the doctors in Poland. My first step when I returned to Warsaw was to schedule a bone marrow biopsy and based on the results they would be able to determine what treatment was best for me. 

The hospital that diagnosed me in Warsaw was not able to offer the treatment that I required so I had find a different hospital. I sent emails to 4 Cancer hospitals in Warsaw and received an email from 3 of them stating that they were not in the position to help me. The 4th hospital sent me an email with an appointment but I missed it because the email went to my junk mail. I rescheduled and when we arrived to my appointment I was told, in quite a boorish manner and in perfect English, perfect boorish english, that I was wasting the doctors time because I didn’t speak Polish and that I was not to return unless I had a translator.

So it was now six weeks since I met with my doctor in California, six weeks since I was told that I should be starting chemo as soon as possible when I return to Poland and I still had not been able to speak with a doctor.

We returned the following week with a translator and were informed that even though the doctor spoke English very well it was a matter of liability that she had to discuss my case in Polish. I was told that since I did not have health insurance it would make the process more difficult, not impossible but difficult. I was willing to pay for my treatment and I thought that this would be ok but apparently this actually makes things more complicated.

My type of cancer is more difficult to treat, it is a disease of the blood and because of this there is not a strict protocol for its treatment. They could put together a treatment plan but that plan could change frequently, because of this it is difficult for them to know how much to charge us for the treatment. I was told that they would put together a treatment plan as soon as possible but that because I don’t have insurance that the director of the hospital would have to approve this plan before it could go through. My translator called everyday for a week, at the end of the week he was told that a contract would be sent right away. I never received that contract, but I did get an email, the email that they sent apologized and said that they had decided that they wouldn’t be able to provide the proper treatment that I required and that I should find a different hospital to receive treatment.

At this point I had been turned down by 4 hospitals and was hoping that the 5th would be willing to treat me.

The 5th hospital that I found actually specialized in blood cancer so I was was hopeful that this would be the hospital for me.  Hospital number 4 sent a request for treatment to this hospital and my friend was able to speak with the secretary of the director and was assured that they were working on my case and that I should receive a contract and an appointment by the end of the week.  The news at the end of the week was that this hospital does not usually treat private patients. It is possible, I was told, but I would have to send an email to the director and plead my case.  Last week I had to write a letter that includes my medical background and explain why I require treatment and send it to the director of this new hospital in the hopes that they will allow me to receive the treatment that I so desperately need. I have now received a reply from the secretary of the director, the reply states that they are reviewing my case and that I need to be patient while they determine if they will accept me as a patient.

Collywobbles and patience don’t walk hand in hand.

 I am hoping that next week I will be able to see a doctor, all I want to do is to start my treatment and start my journey to recovering from this disease. Once I have a treatment plan then I will do as the doctors tell me, I will be the best patient possible and I will fight for my life once again. Waiting to begin my treatment is waiting to get my life back, its waiting to find a semblance of normalcy that I have been missing since the cancer returned. I am ready to beat this again, I am young, strong and stubborn and with my wife by my side I am ready to fight!

This Blog may be about depression but it is not a sad story, I like to think of this as a story of strength not a story of weakness.

I feel good, I am strong and only have some minor symptoms of the cancer, it is actually quite strange that I could be so sick yet feel so good and for this I am grateful.

Today I heard from the hospital, the Director has agreed to treat me, this is a huge first step towards beating this cancer back into remission! I am now waiting to get an appointment and from there I should be getting a bone marrow biopsy. The results of the biopsy will determine the course of treatment that I require.