Posted by: healingseeker | February 1, 2011

Grateful to be cancer-free yet brief Pity Party over Lymphdemia issues

Port

1st of February 2011

I am extremely grateful to be cancer-free. All through this cancer journey I traveled, I was so proud that I only had nine pity parties. I am sorry to say that with today’s verbal bombshell, I briefly succumbed to pity party number ten.

Before I continue – let me reassure you that I still remain cancer-free. So it is not that. Phew!

A brief review:
Jan. 7, 2010 – Stage 3A Breast Cancer diagnosis
Jan. 15, 2010 – Surgery to get Sub Q Port implanted for chemo purposes
Feb. 4 to July 1, 2010 – 8 chemo sessions three weeks apart
Aug. 11, 2010 – Double Mastectomy, removal of 10 lymph nodes underneath left arm, and full Hysterectomy
Sept. 15 to Nov. 5, 2010 – 35 radiation session
Nov. 11, 2010 – CT Scan & Bone Scan reveals that there is no more cancer in my body. Woo-hoo!

I have been thrilled and so very grateful to be cancer-free. There is just some tweaking that needs to be done to get back to “normal.”

Since getting the ten lymph nodes removed on August 11, 2010, my left upper arm has been swollen and rather painful. On a pain scale of 1 to 10, 0 pain until I move my arm in the wrong way to a pain level of 6 or 7 that would last for a minute or two. This would precipitate a brief gasp, a slowing down of action, and then I resume normal activity after a relatively brief span of time. This is to be expected. It’s called Lymphdemia.

Starting a couple of weeks before Christmas 2010, I noticed that my upper right arm and right neck would have frequent spasms of pain throughout the day or night. I finally went to see my surgeon about this on Jan. 18, 2011.

Dr. Patterson indicated that the pain in the pain and swelling in the right upper arm and neck would have nothing to do with the Double Mastectomy. He feared that the port, which was implanted in my right collar bone area, might have caused a blood clot. I have to admit that I did not sleep very well that night.

He scheduled me for a Chest X-Ray and Ultrasound the very next day. As the ultrasound was being conducted, I asked the technician if she would alert me if she saw a blood clot. She indicated that she was not allowed. Only a doctor could give me those results. I half-jokingly said, “Couldn’t you gasp or make some kind of sound?” She said no.

After the ultrasound was over, the technician said, “I can tell you this. If I had seen a blood clot, I would not have been allowed to let you leave. And you may go.” I thanked her profusely. I slept so much better that night.

The next day, Dr. Patterson removed my port. After all, it serves no purpose if I am not going through chemo. He said, “We can always give you a new one if need be.” Naturally, he and I never want there to be a need to do this as it would indicate that the cancer had returned. My affirmation: I am and will remain cancer-free.

FYI – He confirmed that my ultrasound and chest x-rays confirmed that I was still cancer-free and no blood clots. Woo-hoo!

To remove the part, he had to give me ten Novocain shots to numb the area. Then he had to cut me open to remove it. He cut me in the same location of the original scar so as to not create a new scar. Afterward, he gave me one internal stitch and three outer stitches. I still have the surgical tape covering it up. The pain level after the shots wore off was not that bad. I took some Tylenol. He also requested that I sleep on a recliner that first night only as he did not feel it wise that I fully lie down. I was to come back the next day if I noticed any swelling. Thankfully, it was fine.

Since the port being removed, the swelling in the right upper arm is a little less and the pain in upper arm and right neck happen less frequently.

He also sent me to a physical therapist to deal with the Lymphdemia and Scar Tissue from the surgery.

I am going to Benchmark Physical Therapy in Greeneville, TN. Diane, my therapist, is just as nice as she can be. Ideally, she would like to meet with me 12 times; however, typically, insurance only covers six visits. I’ve been three times so far.

Jan. 25, 2011 – Visit #1
She measured the swelling in both arms by using this water displacement system. I can go back in 3 months or 6 months and have them measured again at no cost. If the swelling has increased, then I could go to my surgeon and get him to prescribe another set of physical therapy sessions.

She is putting me through a set of exercises to do with the hope that I will follow through at home. This is a needs-improvement opportunity. I get so busy with my writing that I have not been great in follow-through. I will work on getting better.

Jan. 27, 2011 – Visit #2
She is doing this procedure to re-map the way my lymph nodes circulate. She plans to teach me this system so that I can do this on myself.

She also needs to flatten and smooth out my scar tissue. She rubs this instrument over my chest area that is the size of a razor. It looks like it is made of firm plastic. There are no metal parts to it at all; however, it feels like she is pushing pins into my chest. On a pain scale of 1 to 10, the pain level is a 9. I am working on going to my “happy place” to not focus on how much this hurts. She explained that if my scar tissue does not get loose from my chest wall, reconstruction surgery will be really painful.

She wants me to jerk and manipulate and roughly massage my chest area to try to loosen this area up. I am going to have to turn into a bit of a masochist. I don’t remember anybody forewarning me about any of this.

She also prescribed this day compression sleeve and night compression sleeve through Oxy-Care. I found out that my insurance does NOT cover the sleeves. The night sleeve, which is quite bulky, costs $149. You also have to purchase two sets of bandages to help hold this in place. I believe they said that would be another $32. The day compression sleeve costs $59.

Apparently, no insurance company covers these sleeves even though they are very necessary for someone with Lymphdemia. When I asked Diane why she thought this was, she said it probably was determined by the same people who suggested that women wait until they are at least 40 before they get annual mammograms. This is ridiculous because more and more women in their 20’s and 30’s are getting breast cancer. There was even a little girl who got it at age 2. She is 4 now. Sadly, breast cancer is no respecter of age.

My appointment to get fitted for the sleeves is tomorrow, Feb. 2, 2011.

Feb. 1, 2011 – Visit #3
This was the visit where I received the verbal bomb shell. I reported to Diane about the prices of the sleeves. I had been thinking that I would probably just get the day sleeve that costs $59 as that should probably be sufficient. My speculation was that after all, I would only need the night sleeve for a few weeks until the swelling in my left upper arm returns to normal.

Here’s the bombshell. According to my physical therapist, my left upper arm will NEVER return to normal. She indicated that I will need to use those two sleeves for the rest of my life. I must admit that I tear up at the very thought.

I came home all dejected. I ended up sobbing in Randy’s arms. I told him that the sleeves were a life sentence. He, wise and loving man that he is, said words to the effect that it is better than a death sentence. He is grateful that it is something that we can handle and deal with. He reminded me that there would be a lot of people grateful if they only had to deal with the sleeves. He is right. It is just that I had no clue that this is something that will be with me for years and years. No one in my cancer support group had ever hinted about anything like this. I am anxious to talk to them at the next meeting.

To the best of my understanding, this is Diane’s explanation. The swelling in my upper left arm is stagnant water. The job of the lymph nodes is to circulate that stagnant water so that is free-moving. But since all ten lymph nodes in my left underarm area are gone, they will never be able to do this. The day sleeve is to help manage the swelling during the day. The night sleeve is a form of therapy.

The night sleeve is very big and bulky. Randy and I may need to trade sides of the bed. I hope there is room for the three of us in our queen-size bed: Randy, me, and the night sleeve. I’ll include pictures in my next blog.

Randy took me out to eat to get comfort food. How is this for irony? As I stuffed my face at Golden Corral in Morristown, Tennessee, I read a book that I recently ordered from Amazon.com called “Fit for Life, Not Fat for Life” by Harvey Diamond.

I am mostly feeling calmer now. My writing helps calm me down as well.

I guess I had been resting in the thought that all these treatments I would be going through were a year or two of my life and then I would move on. The sleeves, according to Diane, will be necessary for the rest of my life or I risk getting Cellulites and having to be hospitalized to lower the swelling. The good news is that it has not spread to my lower arms or hands. I pray that it never will. I also pray that in my case, she will be wrong.

In any case, most days, I am doing really well. It was just a shock to my system to hear her words. I am not thrilled with the idea of being held back by physical limitations. I don’t think that is the way that God meant us to be. So I am going to affirm freedom for myself. This will be a work-in-progress as well.

I would appreciate your prayers of support that the swelling in my arms resume to normal and that the pain goes away. I appreciate all you have done for me throughout this journey.

I wish you all the best. May you be happy and healthy now and always!

With so much love,
Healing Seeker aka Debbie


Responses

  1. Lymphedema stinks. I’m glad you have a good specialist to help, and I share your pain and frustration. The sleeves are awful, and the cost adds insult to injury. Seems the surgery and treatment should be enough suffering, without lymph issues, too.

    • Thanks so much, Nancy! I am definitely not thrilled with the prospect; however, I am feeling stronger now about dealing with it. Love ya, Debbie


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