Posts Tagged ‘best’

I’ve been in the hospital for 14 days now. It has been a bag of mixed tricks up to this point.

I got some good news this morning. They are going to leave me on the antibiotics until Monday and do the surgery on Monday. So I will not have to go home and come back. That is great news to me. Going home sounds wonderful but coming back again for the surgery did not. At least now I am settled in.

The procedure itself should be pretty minor and fast. A camera is inserted into my penis and run up to my bladder. They will then use a laser to break up the stone and suction the pieces out. The journey then continues up into my left kidney. They will “pulverize” the 7 stones there and suction out the pieces. A stent will be put in for two weeks making sure everything is clear.

When I get home Palliative Home care will be working with me reduce pain an get my life back to normal! ๐Ÿ˜

After that, my life can hopefully get back to normal!

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My youngest daughter came down to visit me this weekend. I asked her to bring her guitar so we could sing. I love music. We sang a lot and she played and sang many songs for me. I could not have asked for better medicine!

My wife and two daughters hold my heart in their hands.

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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!

๐Ÿ˜‚๐Ÿ˜ฌ๐Ÿ˜ ๐Ÿคช๐Ÿคจ๐Ÿ˜‡๐Ÿ˜ก๐Ÿคฌ

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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!ย 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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