Every house on our block of our street has a melanoma support sign in its yard. Every single house. That’s approximately 40 houses. When we turned onto our street on the way home from the Clinical Center, there were 40 melanoma support signs screaming HOPE to greet us. It is absolutely incredible. This magnificent, overwhelming, extremely humbling display means more to me than I can possibly put into words. I feel utterly embraced. I cannot even begin to express my gratitude. I am awed by this communal support and love. I am filled with an incredulous feeling of camaraderie for each and every one of our neighbors. I am renewed in my resolve to win this fight. I am so completely thankful for this support; we both are. Thank you, thank you, thank you.
Today I came home to my sweet sweet baby. Again he is huge and so grownup. We had an immediate reunion and now it’s almost like I was never gone. I am much more tired this time. I’ve needed help standing up a couple of times and I’ve had to hand off the baby to Jeff because I was too tired to hold him. But last time I was tired the first few days too, so I am hopeful that this will be a speedy recovery again. With my mom and Jeff waiting on me hand and foot, I have no doubt I’ll be back to normal soon. Also, I don’t have the PICC line anymore so every-day things, like showering, will be a lot easier. For some reason, the idea of having the PICC line removed terrified me. Jeff found it very amusing that after going through two rounds of IL-2, having a catheter inserted and removed, two liver biopsies, and all of the other ridiculousness, I was honestly scared to the point of an almost panic attack to have the PICC line removed. I don’t know why exactly; I thought it was going to get stuck in my vein and refuse to come out. It didn’t. I took about 3 seconds to remove and I didn’t feel anything at all. Silly. Otherwise the last 2 days at NCI were uneventful. I lost about 20 pounds of water weight in 2 days and I continued to recover with the help of my new favorite drug: injectable Benadryl. We were discharged this morning and got home around 11:30am. We go back April 4th for the CT scan to see if the IL-2 is working (which is superfluous because clearly it is working). We have an appointment with Dr. Schaub on April 5th to discuss the results. Last night, I asked him how quickly we would begin the next treatment after receiving the scan results (either more IL-2 if it’s working, or the TIL cell treatment if it’s not) and he said we would start that same week. So I have all of March to recover, renew, and reconnect. And for that I am thankful. My only plan so far is to make a freezer full of baby food for Kai because he’ll start eating solids around the time I am next in the hospital, and since we don’t know which treatment we’ll be doing yet, I think we better stock up. I also look forward to visits from family and friends, and so many more cookies.
I just put baby Kai to bed (fingers crossed it’s another all-nighter) and as I was rocking him I thought about the last night I rocked him before I went into the hospital about a week ago. That night I reminded myself that soon I would be rocking him again and round two would be behind me. And I was right. As horrible as going through this treatment is, it really just represents brief interludes in between the nights I rock my baby to sleep. Even today, while I’m still recovering, I can’t remember the extent of the pain; I only know the love of putting my baby to bed. So now I remind myself that soon this whole thing will be behind us and I will be rocking my baby to sleep for years to come. And for that I am thankful.
Today I am thankful for the incredible support of our fabulous neighbors, the display of love means so much to me; my mom who lovingly took care of Kai this past week; all of the supportive cards and messages that greeted me when I came home; my amazing family and friends; and, as always, my wonderful husband Jeff who takes such great care of me, and my perfect baby Kai. Because of you I know only love. Cherish.
Our street:
I am smiling from ear to ear! I am so very happy for you!
ReplyDeleteEvery time you had mentioned the signs in your neighborhood, I kept thinking I would love to see that. Well, I knew it must be impressive but this is breathtaking! I can't even begin to imagine how this must have made you feel when arriving home from the hospital. Happy March!!
I adore that collage of photos!! So amazingly beautiful in all the love that it represents! I'm so happy you are home now resting and absorbing the love from everyone around you. May it give you strength!
ReplyDeleteI'm going to take my quote for from the Academy Awards last night because I thought it was so powerful:)
"It's not the load that breaks you down, it's the way you carry it."~ Lena Horne
"Amazing Jamie"!! That is what I am calling you in my prayers to God. And I am also praying for your dear baby and hubby Jeff.
ReplyDeleteWhen I first heard of your troubles in round two I was very sad thinking you had not made it very far but then to hear you got all those doses, I am so happy for you and relieved ... I know you would have been disappointed with less. You are so brave and so strong. You are beating this girl!!
Where do I got one of those signs?
All the best to you and yours,
Jacquie
There are a few signs left in a cardboard box on the porch of the yellow house diagonally across the street from Jamie.
ReplyDeleteYou have a month to rebuild your strength and spirit! To use the book title, Eat! Pray! Love! And spend some time playing, too! And continue to be buoyed by the nonstop prayers and love that come your way.
ReplyDeletewhat a great neighborhood..you are truly blessed.
ReplyDeleteYour blogs are so well written and very inspirational...keep up the good work
we are all praying for you..you have a whole month to recoup and renew..
Tom and Mary
Jamie,
ReplyDeleteToday I had the car detailers here working on my car in the driveway and heard someone asking them if the could tell them what the signs were about. I was really tickled to hear that -- the curious buzz is great.
There are a half dozen signs left in the box on my porch (#7016), plus a few of us have 2 and can share the wealth as more folks want them.
If you have any projects you want to do over your treatment vacation, Susan and I have every tool and craft supply imaginable. I also have a library of a billion sewing, craft and pottery books. Even children's clothes. Not sure where your interests and tastes lie, but I love to share this stuff.
Beth
I knew it must be impressive but this is breathtaking! I can't even begin to imagine how this must have made you feel when arriving home from the hospital.
ReplyDeleteActually about to research and you gave me new ideas, thanks and most probably i will be there next week! thanks Medical Consent Form Grandparents
ReplyDeleteI was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
ReplyDeleteliver already present. I started on antiviral medications which
reduced the viral load initially. After a couple of years the virus
became resistant. I started on HEPATITIS B Herbal treatment from
ULTIMATE LIFE CLINIC there website is https://ultimatelifeclinic.com) in March, 2020. Their
treatment totally reversed the virus. I did another blood test after
the 6 months long treatment and tested negative to the virus. Amazing
treatment! This treatment is a breakthrough for all HBV carriers.