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Posts Tagged ‘uncomplicated’

Lupron Shot

I had my last Lupron Shot on Tuesday. Out of the many side effects I would say I have fatigue, swelling of legs and feet, overall weakness, and mood changes.

This Shot is good for three months. I still take me bicalutomide every day. Nine radiation treatments to go.

My numbers look good according to my blood work.

My moods are the scary part. We all have good or bad moods. But as adults we know when to control them. As for me right now I just need to avoid people and all will be good! I’m so tired that all of my filters are gone. So I apologize in advance for what may come out of my mouth.

I’m normally a pleasant person…really!

😂😬😠🤪🤨😇😡🤬

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The 12th Day of Radiation…

Not exactly a title to set to music, but coming up with snappy titles is not always my thing. I ask Ariel to help me out many times.

So 12 radiation treatments are behind me…17 ahead of me. My last blog was about side effects, so no need to go over those again. They have not really changed. Maybe a few have intensified, just a dash, but for the most part I guess (I hope) a status quo has been reached.

So this post is just a couple of heads up I have tripped over and hopefully others may avoid by reading this.

My hormone therapy creates havoc with my body. Several side effects are definitely icky ones due to blocking my testosterone. But now, about three months into it, I have found a couple of things that have helped.

One side effect is nausea…the second one would be agitation. I do not think either of these are avoidable, but I have learned to choose the “best” time to feel them at their worst.

The six months of treatment started out with a heavy duty hormone shot good for three months. Followed up with taking a pill every day. One side effect that was stressed to me was that I would feel fatigued or tired. Because of that, a lot of people choose to take the pill in the evening so that they can sleep most of it off. Since I had two months of hormone therapy before I started radiation, sleeping it off was not that big of a deal for me. I did not have to be anywhere at a set time so I was taking my pill before bedtime. I knew that I was not sleeping all that well, felt nauseas, and agitated during the night, etc. But not a huge deal since I could take a nice morning nap each day. But then I started my radiation treatments. I now have to get up at 5AM to start my day and make it to my morning appointment. One week of early morning alarms and I was like UGH! But being the not so brilliant person that I am, I did not think of changing the time that I take my hormone pill. Tuesday of this week I smartened up and am now taking my pill at lunch time. So my afternoons and early evenings are not all that great, but when bed time hits, along with the help of Melatonin, I get a good nights sleep. So the rest of this past week, my morning routine went much smoother. Mostly because I was awake for it.

So what I am saying here is be smart with the timing of your medication. Choose when you want to be at your worst and make sure to get SLEEP.

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Things are going great!

After my first week of radiation, I think things are progressing along quite well. Don’t you?

Faceglow And I bought Wendy some lovely new lingerie! IMG_2109

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Let the games begin!

After the news about Hope Lodge in Boston, Wendy and I had yet another choice to make. Do we look for hotels, an apartment, a private home, etc., near Dana-Farber or do we look elsewhere for my treatments. I knew that Wendy did not want to live in Boston for two months. She made that quite obvious to me. And I was not keen on the idea of Wendy driving around in Boston if I was not able to. Neither of us considered the commute a viable option. Sounded to me like we were on the road to look for a totally new treatment facility. Or go back to the VA which we were at least familiar with and we knew they were wheelchair accessible.

I called my Dana-Farber Oncologist to discuss our options. He had already been thinking about it and offered me an immediate solution that sounded too good to be true. He had contacted a Radiation Oncologist that he personally knew in Portland who worked for the Maine Medical Cancer Institute. He was willing to take over my case. At this point I was more than willing to go with that suggestion. I could at least talk with the new doctor to see what he thought. My biggest worry was starting all over again with doctors and treatment plans. An appointment was made for the next week and at the Scarborough Medical Center which is only 45 minutes from home. That certainly sounded hopeful.

Many of you may be wondering why I did not go there in the first place. After my let down with the VA, I wanted to seek out what I thought would be the premier of Cancer Centers. For the New England area, that would be Dana-Farber. I really had not considered looking into Maine Medical Center.

An appointment was made for the following week to meet with the new doctor. My MD Oncologist at Dana-Farber wanted me to continue with my hormone therapy until I spoke with the new doctor. He might want to continue on the same path I was already on, or he may want to change things up.

Wendy and I met with him, and for both of us, it seemed like our prayers had been answered. We liked the facility, the doctors, the nurses, and he wanted to follow the same treatment plan that I had started with Dana-Farber! I had finally found a door in the midst of brick walls.

So the way things are now, I am receiving my hormone therapy from Dana-Farber, and receiving my radiation treatments from Maine Medical Cancer Institute in Scarborough, Maine. I hit several snags on the journey but I feel like God worked things out that would ultimately be the best for me. I just finished my sixth radiation treatment today and have the weekend off! I am very thankful for that. I will share in my next post some side effects that have hit me. Some expected, some not so expected. BUT…After all of this, my new most favoritest (my word) verse in the Bible is Psalms 46:10a “Be still, and know that I am God”.

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Are you kidding?

So I had rounded yet another corner with my treatment plan. I had decided not to have surgery like the VA wanted. At least not with some type of further testing done first, and some imaging done. The three Oncologists at Dana-Farber completely agreed with me, and with the scheduling of appointments, my first one would be to have an MRI done.

The following week I had my MRI done. The MRI showed that my prostate was cancerous with a tumor bulging out more on one side. The cancer had not metastasized which was good news. So my elevated PSA count, biopsy results, MRI results, and my concerns as a paralyzed man were all taken into account when deciding on a treatment course best suited for me. This is what I was asking the VA to do for me and was flat out told that is not their protocol. Looks like the VA medical system could still use some help.

So I would begin my preferred treatment plan immediately and it would go as follows.

  1. Begin hormone therapy. This would begin with an initial Lupron shot followed by a second shot in three months. Lupron Depot is classified as a leutinizing hormone releasing hormone (LHRH) agonist. HRH agonists work by telling the pituitary gland located in the brain to stop producing leutinizing hormone, which (in men) stimulates the testicles to release testosterone.
  2. Along with the shots, I would be on Bicalutamide hormone pills for six months. Most prostate cancers need the hormone testosterone to grow. Bicalutomide blocks testosterone from reaching the cancer cells. Without testosterone the prostate cancer may shrink or stop growing.
  3. Two months into my six month treatment program I would start traditional radiation. I was to have two months of radiation, Monday thru Friday.

The doctors were very knowledgeable and took the time to listen to me and my concerns of how a surgery would affect me. But even here I had to explain why going into this as a paralyzed person would be different than an ambulatory man. I pointed out several things that they had not thought of. Once again I wondered, was I the first paralyzed man to have prostate cancer? But they were willing to listen and agreed with my choice of treatment over surgery. All of this in hopes that at the end of six months, my body will go back to normal.

Most of the time Wendy and I were just listening as they explained the treatment, what to expect and possible side effects. here are some of the possible side effects that I might experience.

  • redness/burning/stinging/pain/bruising at the injection site,
  • hot flashes (flushing),
  • increased sweating,
  • night sweats,
  • tiredness,
  • headache,
  • upset stomach,
  • nausea,
  • diarrhea,
  • constipation,
  • stomach pain,
  • breast swelling or tenderness,
  • acne,
  • joint/muscle aches or pain,
  • trouble sleeping (insomnia),
  • reduced sexual interest,
  • swelling of the ankles/feet,
  • increased urination at night,
  • dizziness,
  • weakness,
  • chills,
  • clammy skin,
  • skin redness,
  • itching or scaling,
  • testicle pain,
  • impotence,
  • depression,
  • memory problems.

This was quite a list to hear as they went over it with me. Some of them did not apply to me because of my paralysis. I guess there is a silver lining to every cloud.

Next we discussed the Monday thru Friday radiation that I would be getting. They told me each session was extremely brief. The problem is that Dana-Farber is at least a two hour drive from home. But that, in theory, was no problem since they had a place called Hope Lodge that people could stay in for free during treatments. Of course that would mean Wendy and I moving to Boston for January and February. Neither of us were very thrilled about that prospect, but had little choice unless we wanted to make the drive in to Boston 5 days a week. I certainly did not want to do that.

So I received my first Lupron shot and had started taking my Bicalutamide when I heard from Hope Lodge. After I hung up the phone with Hope Lodge, I just hung my head in disbelief. I yelled for Wendy and told her the news…Hope Lodge rooms were not “exactly” wheelchair friendly, and their shuttle service back and forth to Dana-Farber was not handicap accessible AT ALL. None of their shuttle busses had ramps or lifts for wheelchairs. Wendy first asked what I meant about the rooms. They told me the bathrooms were small and that the showers were not roll in accessible for my shower chair. But the real kicker was that their shuttle service was not handicap accessible? In a major city, Boston? At a leading cancer center, Dana-Farber? I could not believe it. Did Boston miss the memo about ADA Laws? Wendy did not want to live in Boston for two months and she certainly did not want to be the designated driver in a busy city. And neither of us wanted to make the 4-5 hour drive, five days a week into Boston, for my treatments.

I called my Oncologist and told them the news. They were as shocked as I was and had no idea. They were tripping all over themselves apologizing. Yet that did not change the fact that I had hit yet another brick wall.

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Decision Time

Some of you may be scratching your head after my last post…wondering what any of that has to do with prostate cancer. After I am up and ready to face a day, things go pretty smooth. I have my snags along the way, but so does everyone else. At the end of the day, which is very early for me because of dealing with chronic back pain, I have to get myself ready and prepped to go to bed. My point is this…nothing in my life is now easy or fast. Yet for some reason, doctors just do not get that.

Since September, here are some comments that I have had doctors make to me while discussing possible treatments. Choices that have no bearing at all to me or will make Wendy’s and my life horrible. I’ll tag the comments to the respective treatments. I will also mark in red how it does, or does not, affect me. Then you will see how I made my decision.

Let’s start with surgery without any testing other than a PSA count and biopsy.

“We will cut your Urethra Tube on each side of your prostate and remove your prostate. You will experience your bladder leaking, but that can be taken care of with medication and some exercises such as Kegeling to strengthen your bladder.” (Yes this was really said to me) “There may be possible radiation or chemotherapy after surgery if needed.”1508788941020

  1. Is the cancer contained in the prostate or could it have metastasized outside of the prostate? The Urologist was quite sure the cancer had not spread. Not sure how they know that without looking. I was told they would deal with any complications after the surgery. Sounded pretty complicated to me before the surgery.
  2. My bladder has the tendency to already leak and I have been on medication for that for the past 20 years. Which is in my medical records if the doctor had checked.
  3. Kegeling? Is there some part of paralyzed that the doctor does not understand?
  4. I will now have to change my lifestyle again and switch to using a condom catheter and leg bag 24/7…or take up wearing depends. 

Traditional Radiation

“This typically has best results over other forms of radiation. You may experience a slight rash or burning irritation at the entry points of radiation. Chances of your bladder leaking is minimized. However, you may experience loose bowels and increased urgency to go to the bathroom.”

  1. Regardless of what the radiation does at the entry points, I will not feel it.
  2. My bladder not leaking more than it already does would be a good thing.
  3. Loose bowels is a very bad thing for me (and not a good thing for Wendy to deal with). 
  4. I will not know if my body tells me there is an urgency to go to the bathroom. And even if I did think there was an urgency, it would make little difference since I would not be going “quickly” to the bathroom. My bowels and or bladder will do what they want to do regardless of where I am. In other words, I would no longer be leaving the house.
  5. But when the radiation is completed, there is a good chance that my body would revert back to how it is now. 

Chemotherapy

“It is unlikely that you will need follow-up chemotherapy.”

  1. Chemo is not even a consideration for me. I have seen too much suffering and death from this “cure”.

Protein Beam Therapy

“We do not think this type of radiation works as well as traditional radiation. It can also cause more extreme effects that traditional radiation causes.”

  1. I do not like the sound of more extreme effects.
  2. There are only a few places in the USA that offers this type of treatment. That would mean traveling or moving to a different location for the period of the treatment.

Low does radiation coupled with hypothermal treatments

I did not discuss this treatment with any doctor. Once again this would mean Wendy and I packing up and moving to a new place in order to get this. Remember that I am not just able to pick up and move to a new place without a lot of planning ahead.

Brachytherapy

“Research shows that this type of therapy works best for pediatrics. So we would not recommend this for you.”

  1. Interesting to hear since most definitions say that this is a cure often used for prostate therapy.
  2. There is the problem of planting radioactive seeds inside of my prostate and being around other people or pets. So either I leave home for a while to a place of hermitage or my family and pets leave home. And once again, Wendy would have to stay with me to assist with other possible side effects.

Traditional radiation coupled with hormone therapy

“You will have six months of hormone therapy. What that means is that you will be taking a medication to block your testosterone production which feeds the cancer in your prostate. After two months into the hormone therapy, you will receive six weeks of radiation. Both of these will likely give you loose bowels and an increased urgency to go to the bathroom. The hormone therapy will give you what we refer to as male menopause. Hot flashes, moods changes, and breast tenderness would be the most common. After your six months are up, you will start producing testosterone again and your body should return back to normal from the hormone therapy and radiation.

  1. Six months of male menopausal symptoms? Breast tenderness? The only good thing about that is once I am off the medication, by body “should” return back to normal. Same with the radiation. Six months of “ick” but then back to normal. Or at least my definition of what is now normal.

So…there are my cures. It was time for me to decide if I was going to proceed with any of them or do what I would prefer which is the “do nothing” approach. Once again, I needed to consider what Wendy wants, do a lot of thinking, and a whole lot of prayer time.

I decided to go with the traditional radiation coupled with hormone therapy. That meant canceling my upcoming surgery with the VA, and working with Dana-Farber. At least at Dana-Farber I was talking with Oncologists. Things seemed to be settling into place. Wow was I wrong to think that!

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Cancer Research

After I finished my phone call with the VA Urology, I knew I had to get my act together fast since I had agreed to surgery. I continued reading reputable web sites about prostate cancer as well as talking with other men that had gone through the same thing.

Let me say here that my research and my communication with other men is just that…mine. I am in no way recommending one method of treatment over another. It is up to the individual to decide what is best.

Here are some possible treatments, I’m sure not all, that I have found out about.

  1. Surgery
  2. Traditional radiation
  3. Chemotherapy
  4. Proton Beam Therapy
  5. Low dose radiation coupled with hypothermal treatments
  6. Brachytherapy
  7. Traditional radiation coupled with hormone therapy

The problem with research, talking with doctors or friends, is that everyone has a success story. Looking at it from the angle of the one with the cancer, I see (and  know) many stories that did not end in success. One key thing that I kept finding is that prostate cancer is typically a very slow moving cancer. So that was in my favor. The second most talked about concern of men is their future sexual performance. Unfortunately I could speak with ten individuals and go away with eleven opinions.

Now lets toss into this picture the fact that I am a T8 paraplegic. I must admit I find it hard to believe that I am the first man in a wheelchair that has ever had prostate cancer. Yet every doctor I spoke with acted like I was a case they had never had to deal with before. Even in the VA.

I’m not even sure if I will be able to explain my thoughts here and make any sense to those of you reading it. I realize that I have prostate cancer and that the end (and best) result would be for me NOT to have prostate cancer. But as a paralyzed man, there are things to consider that the doctors had not thought about, or really did not care about as long as the cancer was gone. The next few paragraphs are a little graphic in description because I want you, as a reader, to try to understand my hesitation in treatment.

I have been in a wheelchair for 20 years now and my way of living, thankfully, has settled into a routine that Wendy and I are very accustomed to. I needed to think long and hard about “upsetting the applecart” that has become part of my daily life. I have several good friends that are also paralyzed and they understand my thinking. Wendy understands why I am thinking a certain way, but she cannot get past the point of “just get rid of it.” And I understand why she is thinking that.

Let me try to explain my concerns here by describing a typical morning for me. I wake up in the morning, early by all accounts, and silently groan to myself about getting ready for the day. First I need to go to the bathroom. Ah the days of when that was fast and easy. Now I grab the edge of the bed and pull hard enough to get my elbows under me so that I can push myself up to a sitting position. I toss the blankets off my legs and then take one leg at a time with my hands and push them off the side of the bed. Once I finally get them placed in front of my wheelchair, I lean forward, push up with my arms, and throw my body up and over onto my wheelchair. Then I have to hook my nightly urine bag onto the front of my wheel chair and hope that my condom catheter is still on me. If that all goes well I roll into the bathroom where I have to remove my night bag and condom catheter so that I can do what is called a straight catheterization to empty my bladder. Once that is done, I roll off to the kitchen to get my cup of coffee that Wendy has ready and waiting for me. I shudder to think of people that do not have a “Wendy” in their life.

We take our coffee into the library and play three computer games every morning. Kara and Ariel have dubbed that time as our romance time. And in many ways they are right. We gradually come to life, drink our coffee and talk about things that we need to do for the day.

Once we finish our coffee we head back to the bedroom for round two of me getting ready for the day. I transfer out of my wheelchair back onto the bed. Wendy pushes my wheelchair to the side and brings out my shower wheelchair from our bathroom. My shower chair is basically a potty chair for paralyzed adults. She puts my shower chair next to the bed and I transfer onto that. Then I go into the bathroom, and back my shower chair up over the commode. The chair is designed for paralyzed people to have a bowel movement. Bowel movements for me do not just happen. It is now a scheduled process that I must do. The process involves, vinyl gloves, lubricant, and suppositories. I have to use digital stimulation and suppositories in order to clean out my bowels. The entire process can take up to an hour depending how much stool I have and how cooperative my colon is for the day. Once I think/hope I am finished, I am able to roll into my shower and get cleaned up. While I am in the shower, Wendy takes care of my supplies and cleans up any possible messes that occurred. After my shower I roll back to my bed, transfer, dry off and get dressed. Wendy switches my wheelchairs back around and with one last transfer I am ready to start my day. Unless for some reason, my bowels did not empty when I wanted them to. Then I get to start the process all over and Wendy gets to clean and change our bedding at 6am.

Any of the cancer treatments, and I repeat ANY, is going to disrupt/complicate my morning routine at the very least, or completely change it for the rest of my life. So yes, I needed to think…a lot.

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