On Friday evening we moved Karen from the lovely comforts at Casa Del Ott to her own home. Wendy and Chuck sent her off with a fabulous meal (featuring Chuck's amazing grilling skills) as well as with the tasty leftovers to feed her through the weekend.
Karen slept very well that first night back in her own bed and come morning was surprised to find that she was almost horizontal in the bed (instead of propped to a 45-degree angle as she had been since the hospital). She spent most of the day Saturday unpacking, doing physical therapy, collecting voicemail messages and mail. Dinner was shared with her friends Amy, Tom and Miss Anna who came to visit. Oh, and Karen asked me to cut off the rest of her hair. Strangely, ever since the surgery it has been falling out. I personally think it is from the anesthesia because in the four weeks prior to the surgery without chemo, she has tiny hair stubble regrowing on her head. Regardless the reason for the loss now, she grew tired of picking hair out of her hats and so we trimmed her up. She has a very lovely cranium. You might have to take my word for it, but she does.
Sunday was a day for returning a few of the many phone calls, more physical therapy, napping. Her friend Karen dropped off three delicious homemade soups and Lisa Roettger brought over a wonderful lasagna dinner.
Monday, Karen has a visit planned with Sara and Marcus and then choir rehearsal that evening. She was able to attend rehearsal last week and received a warm reception as well as a little playful chiding. Karen told me that one of the members joked, 'I can't believe you're here so soon after surgery! Now if I want to miss rehearsal because I have a sore throat or something I'll be asking myself 'Are you one week post-surgical? No? Well then, you're healthy enough to go!''
Hopefully there will be visits with Renee and Lori this week too. Karen is not yet allowed to drive, so if you have time during the day, please drop word and perhaps we can arrange for you to meet Karen for a short walk or a coffee so she isn't stuck inside all week!
Karen has asked me to thank everyone again for their kind support and concern. The cards, flowers, food, calls and emails as well as those sending their prayers and positive energy. She would like to contact you all to express her thanks personally, but just hasn't the energy at present. Please know that she will be in touch and post a message here as soon as she is able.
Only good things -
Janis
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"My friends and family are a blanket of love and support wrapped around me."
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Welcome
Thank you for stopping by to show your love and support. You are a part of this amazing and unexpected journey I am on and I'm so glad to have you here. The outpouring of love and care has been truely amazing and I thank you all.
It has been overwhelming to process all this new information and keep everyone informed with the latest news. To help facilitate that, my dear sister Janis has set up this blog so you can check in at your convenience for updates or sign up for an email alert when I've posted a new entry. You are welcome and encouraged to leave feedback and replies and I will do my best to keep up with them.
I am employing the power of positive thinking, humor in all its delights and visualization of the chemotherapy as piranhas eating up the cancer cells. I welcome any and all positive thoughts, prayers, encouragement, humor or witicism you have to offer. All belief systems are welcome- no gods or godessess will be turned away.
My mantra is "I am healthy. I am strong. My life is abundant and whatever I need will be there for me when I need it." Only good is coming from this and indeed it's already here in the love and care you are sending to me. Thank you!
It has been overwhelming to process all this new information and keep everyone informed with the latest news. To help facilitate that, my dear sister Janis has set up this blog so you can check in at your convenience for updates or sign up for an email alert when I've posted a new entry. You are welcome and encouraged to leave feedback and replies and I will do my best to keep up with them.
I am employing the power of positive thinking, humor in all its delights and visualization of the chemotherapy as piranhas eating up the cancer cells. I welcome any and all positive thoughts, prayers, encouragement, humor or witicism you have to offer. All belief systems are welcome- no gods or godessess will be turned away.
My mantra is "I am healthy. I am strong. My life is abundant and whatever I need will be there for me when I need it." Only good is coming from this and indeed it's already here in the love and care you are sending to me. Thank you!
Timeline
- January 14, 2009 - One year anniversary of the end of treatment!
- October 22, 2008 - Anniversary of surgery.
- June 14, 2008 - A year ago today the lump was found.
- May 22, 2008 - The monthly shots of Zoladex are no longer working to keep estrogen levels low enough for menopause which is what the adjuvent cancer drug therapy requires. Options are weighed.
- May 11, 2008 - Jan RUNS the Susan G. Komen Race for the Cure!
- May 9, 2008 - Six month post-surgery check up at the Mayo. Mamogram, CT scan and MRI are done. A spot under the left arm is found during the breast MRI and further tests, an ultrasound and fine needle aspiration, are done. It's confirmed to be scar tissue from the surgery.
- March 11, 2008 - Karen's first hair cut! It's really more of a trim over the ears but hair is cut nonetheless. It's still thick as it was before but the color has changed to a shimmery fawn from strawberry blonde. The hair on the head is very much attached and staying in place but the eyebrows keep coming in and then falling out. What the heck?
- February 2, 2008 - My dear friends Wendy and Chuck hosted a wonderful 'End of Treatment Celebration'! Their home was packed with freinds and family. It was a really beautiful celebration of and testament to the power of love.
- February 1, 2008 - After a day of tests we meet with Dr. P to discuss the findings for the ovarian cyst. Here's to getting a second opinion: there is no cyst. Instead, it's benign unterine fibroids. And the spot on the lung and the liver remain unchanged: it's a clean bill of health!
- January 31, 2008 - It's three months post surgery. Follow up appointments are scheduled at the Mayo.
- January 14, 2008 - FDA approval is procured: radiation is complete!
- December 17, 2007 - The aromatase inhibitor Arimidex is added to the daily pill line-up. Though already in menopause, which means the ovaries are no longer producing estrogen, the Arimidex will stop the second source of estrogen produced by the adrenal glands. Taking this drug for the next five-plus years will remove the final significant source of fuel for this estrogen-positive cancer.
- December 14, 2007 - Week three of radiation is completed. The halfway point is just around the corner!
- December 7, 2007 - Janis and Karen meet again today to discuss with the radiologist what was found with the MRI. These images, too, are inconclusive so they will all- the CT, ultrasound and MRI- be sent down to her doctors at the Mayo. Once Karen has completed the radiation treatment, she'll meet with her doctors there to discuss the next step for the cyst.
- December 6, 2007 - Janis attends the meeting with the radiologist to discuss the findings of the ultrasound on the ovarian cyst, one of the unexpected spots found in the CT scan. It is inconclusive. Karen is sent for an MRI to get a better look.
- December 1, 2007 - In the first snow storm of the season Karen heads out to get her first tatoos. Four new brown dots are added to the landscape. The tatoo artists asks if she'd like anything more than the dots and after a little consideration Karen selects a big heart for her shoulder that reads 'Pistol Packin' Mama', or at least that's what she tells her mother...
- November 29, 2007 - The results from the CT scan come back with a few unexpected spots. The radiologist believes that at this point they are so small that they are nothing to worry about but will just continued to be montiored. Karen also finds out today that she falls into the 'high risk for recurrance' category. This news coupled with the scan results makes for a difficult day.
- November 26, 2007 - Mom and Dad drive down just to be there for the first day of radiation. They also promise to be there for the last treatment which will be in early January. Janis joins to help Karen embark on the next part of this unexpected journey. Family is a beautiful thing!
- November 22, 2007 - Thanksgiving is spent with dear freinds who have gathered for the last eight years to share the day together. Such good food and good company! The rest of the weekend is spent sleeping as the week and a half back at work have been exhasuting.
- November 19, 2007 - A good portion of the day is spent at the radiologists where Karen is marked up for her treatments which begin the Monday after Thanksgiving. In the appointment last week she asked Dr. N a question no one had ever asked before: What are the color choices for the tattoos? The answers, black or blue, don't appeal to Karen's asthetics so she'll investigate bringing in her own brown ink. A body scan is done at this appointment as well.
- November 14, 2007 - The day is spent down at the Mayo meeting with the lymphadema specialist and our oncologist. Blood tests are done to confirm that Karen is in menopause (who knew there were tests for that?). The test results aren't all available that day so Dr. P talks through the two possible drug therapy treatments. Once the test results are all back she'll know which route will be the best for Karen.
- November 13, 2007 - We meet with our new radiologist and set a course to begin radiation treatment. This is done daily Monday through Friday here in the Cities. The appointment goes well and a new member is added to 'the team'. The Kelley's celebrate an early Thanksgiving at Janis' house.
- November 12, 2007 - It's back in the saddle as Karen returns to work. Her only question: when's my nap?
- November 5, 2007 - This week is marked by much kindness from friends as Karen cannot yet drive. Friends who have been offering to help since the start are enlisted in the transport of the gal with one good arm. A heartfelt thank you to all who continue to bring dinners, do laundry and drive!!
- November 2, 2007 - Karen says a fond farewell to the hospitality and warmth at Casa del Ott and heads home. Janis stays over to help her get settled back into her own space. Wendy has sent along body pillows and along with the pillow 'chair' and neck support Mom and Dad got for her she's able to make a nest for herself in her bed. She still sleeps sitting up as the arm and shoulder and very sensitive.
- October 30, 2007 - Surgery follow-up visit to check on progress and remove drainage tube. Following removal of the tube, Karen will be able to move her arm more, but not above shoulder height nor carry more than ten pounds. She will begin doing more exercises to discourage lymphadema (swelling) in her arm.
- October 27, 2007 - Karen is going on short walks around the neighborhood several times during the day and visiting with a few friends who come by. The underarm fluid drain is collecting very little each day ensuring its removal during the follow-up visit. Pain management is improving with more time between dosing passing and intensity decreasing.
- October 26, 2007 - Wendy and Chuck do an amazing job of taking care of Karen, monitoring her pain meds, providing emotional support and laughter.
- October 25, 2007 - The recliner at the Econolodge worked beautifully as a make-shift hospital bed and Mom fashioned a neck-supporting pillow out of rolled towels. Karen slept well and long. We left for St. Paul around 2:30. At Karen's request, we made a stop at Little Oscars outside of Cannon Falls for pie. We got Karen settled in at Wendy and Chuck Ott's around 5:30 p.m.
- October 24, 2007 - Karen had two 4-hour blocks of uninterrupted sleep at night and another 2.5 hours in the morning. She was up and walking and looking significantly improved from the previous days. She is given the option to stay another night or be discharged. Karen realizes she will not have the wonderful care provided by the nursing staff once home and so she feels it best to be near the hospital in case they are needed, but to try going it on our own that night at the hotel.
- October 23, 2007 - Uncontrolled pain, muscle cramping and insufficient sleep require Karen be admitted for another night. Late afternoon meeting with the doctors, nursing staff and family results in a proper plan to provide Karen with better pain management and an opportunity to get uninterrupted sleep.
- October 22, 2007 - Surgery scheduled at Methodist Hospital with Dr. Boughey. Pre-op begins at 6:45 a.m., surgery at 11:30 a.m., brought out of recovery at 5:30 p.m. Tumor and axillary lymph nodes are removed. Kept overnight for observation.
- October 11, 2007 - After examination, Dr. Peethambraham decides that the Karen's level of neuropathy (tingling in hands and feet) is nearly at a level three and she is uncomfortable going ahead with Taxol today. She provides three possible courses of action from this point for Karen to consider with respect to delaying chemo administration and surgery.
- October 8, 2007 - Scheduled for Third round of Taxol. Appointment is rescheduled for Thursday, October, 11th due to Dr. P's popularity and full schedule.
- September 24, 2007 - Second round of Taxol chemo. Kyle is able to come to Rochester as well. In a change of routine, Dr. Peethambraham determines the Neulasta injection the following day is not necessary because Karen's blood counts have consistently been good.
- September 11, 2007 - Karen wakes up in the morning from a full night's sleep in a bed and without the multiple trips to the bathroom (no steroid pounding for anti-nausea with Taxol). We meet with Dr. Gamble at the Mayo's Lymphedema Clinic to get more information on this possible side effect of removing the lymph nodes under the arm pit (axillary nodes). She provided us with a lot of helpful information and brought in a physical therapist to show Karen some stretching exercise she can begin doing before the surgery.
- September 10, 2007 - Halfway through the chemo! YEAH! Begin the final four bi-weekly chemo treatments of a new drug - Taxol. The drug has different side effects that the first combination and these area typically milder. Delivery of the chemo, however, takes 3 1/2 hours compared to the previous 45-60 minutes.
- August 30, 2007 - The fatigue is starting to nip at Karen's heals and, at times, trip her all together. She learns to package all activities into small, manageable packages and run on short bursts of energy instead.
- August 27, 2007 - Karen's friends Lori and Sara accompany her for her last Adreomyacin and Cytoxan chemo treatment. EVER! They celebrate by having a wonderful meal at a tapas restaurant.
- August 18, 2007 - Karen's 40th Birthday!
- August 13, 2007 - Third chemotherapy treatment and requested appointment with Dr. Boughey to discuss surgery options further.
- August 3, 2007 - Mark and Shirley give a gift of headwraps and caps. Perfect timing as Karen sports chemo hair.
- August 1, 2007 - Karen's hair is coming out in clumps: break out the vintage hats! Some nausea and reflux has developed.
- July 31, 2007 Class on "Nutrition During and After Cancer Treatment" and receive Neulasta injection. Look at wigs.
- July 30, 2007 - Hair begins to fall out en route to Mayo for second chemotherapy treatment. Bloodwork is in normal range. During exam, Oncologist Dr. P says "Where is it?" She feels it is more of a thickening now than a lump!!!
- July 26, 2007 - Karen says that she finally feels "back to myself" She has tolerated the side effects incredibly well; only minor mouth sores, uneasy stomach.
- July 17, 2007 - Return 24 hours later for injection of Neulasta to help boost the white blood cell count. Attend educational classes on 'What to Expect During Chemotherapy' and try-on wigs.
- July 16, 2007 - First chemotherapy treatment. Karen receives two drugs intravenously - Adreomyacin and Cytoxan. Anti-nausea steroids are prescribed every day for four days. These make falling asleep and staying asleep difficult it is found, but are worth the trouble.
- July 11, 2007 - Dr. Williams calls and reports that the lymph nodes show presence of breast cancer cells within them.
- July 10, 2007 - Second opinion at Mayo Clinic, Rochester, MN at 6:45 a.m. Meet with Dr. Connie Williams. Additional bloodwork, ultrasound, fine needle aspiration of the lymph nodes and marker placement ordered. Dr. Williams recommends a staff surgeon, Dr. Judy Boughey, over the chief resident surgeon, and schedules appointment for later that day. Also meet with Dr. Prema Peethabraham, Oncology who gives Karen the option to begin chemo today, but Karen opts to wait the weekend. Surgical options are discussed with Dr. Judy Boughie who reports the Mayo ultrasound confirms the tumor at just under 4cm.
- July 6, 2007 - Breast-specific MRI is performed in St. Paul. Dr. Ogren reports on Monday, 7/9, that the estimated tumor size is 5cm.
- July 3, 2007 - Initial consultation with surgeon, Dr. Diane Ogren at St. Paul Surgery in Maplewood who recommended surgery followed by chemotherapy and radiation (adjuvent therapies).
- July 2, 2007 - At the urging of her dear freind Tom, an appointment is scheduled at the Mayo Clinic for a second opinion.
- June 28, 2006 - Biopsy pathology report from biopsy confirms tumor is an Infilitrating Ductal Carcinoma (IDC), and is estrogen and progestrone negative. Biopsy sample is sent to Mayo for HER/2-neu testing.
- June 26, 2007 - Mammogram and breast ultrasound at St. Paul Radiology. Radiologist, Dr. Leach, suspects cancer and a biopsy is performed on-site.
- June 18, 2007 - Primary physician Dr. Amy Gilbert examines lump and suggests mammogram, ultrasound and biopsy
- June 14, 2007 - Found lump in left breast this morning
- May 9, 2007 - Very thorough breast exam at annual exam
8 comments:
Wow! It is so great that you are back home. No matter what is happening, I always find that things are easier when you are in your own environment.
Take it easy! We are thinking of you.
Michelle, Mike and Adam
A big thank you to Wendy and Chuck for taking such good care of Karen.........I give you an A+ for all that you did.
Karen, I just reread all the comments on this blog and want you to know that you have the most amazing group of up close and personal friends that really watch out for you. And since we can't be there each and every day, I know that your friends will continue to help you out with whatever your needs would be.
I like the fact that you are getting back into the groove with choir practice, exercise, and spending time with friends.
Keep up your great spirit....it is a great healer.
See you on the 13th.
Love, Mom and Dad
PS. I seem to have trouble getting this message into the blog, so I will try Anonymous!
Hello Karen,
Thought I was going to get to see you this weekend, but the connection wasn't made. I know you're enormously popular, but I'll be working to hook up in the coming week. In the meantime, I'm watching House and I'm being pleased that you are safe in an afghan and your own skin, enjoying House yourself.
So much love to your laughing loving self...
Joyce
Hey, K:
Sorry I've been a bit out of earshot lately. I've had a relapse of that hanging cold-thing(ee) that I had a couple weeks ago, and so I've been trying to lay low and nurse it out. Not too effectively. Typically, it hit me when I was in Fargo last week. Such fun . . .
I did get to see several old friends while in Fargo, including Don & Joy. Everyone asked about you, concerned with how you were doing, and wished you well. I've been neglectful to not pass on their greetings . . . ~sorry~
I did get to downtown Fargo on Thursday. It is so fun to see how that area has rebounded, and is really coming alive. I spent a bit of time at a shop called Zandbros or somesuch, and had such a good time. Lots of very fun stuff there, including t-shirts that say
"I once lived in Fargo."
"Really"
I had to pick one up — too much fun. It was only a Large, though, so I'll probably never be able to wear it. I imagine that this is a warning to all of you out there reading this posting . . . if ya see me with the "usta live in Fargo" t-shirt on, ya might wanna be somewhat picky about how close you sit when we're at lunch. To those of you who AREN'T reading this — well, that's just tough. I've made my confession.
adopt adapt adept
Mark
Of course what I MEANT to say was "I'll probably never be able to wash it" . . . which changes the meaning entirely, and makes much more sense of the gibberish that follows that line.
~nevermind~
:-[
adapt adopt adept
Mark
WOW, Karen, we ARE IMPRESSED with your inner strength and bounce-back determination. Sing a new song unto the Lord!! Do get out as often as possible, but be sure to "recharge your batteries" as often as needed with rest and doing easy things that you like to do. You are an inspiration to us!!! HUGS Kathy and Maury G.
Hola from Albuquerque! Karen, I've been following your progress and your challenges ever since your dear and amazing (like you, of course!) sister sent me a link to this blog. I'm really moved by your strength and courage, as well as the way you have been supported through this by your family and friends. I often think back to the crazy party I held for my brother and the way you stepped in and helped with dishes, etc. - just to make sure things went smoothly. Thank you again and again. I couldn't have hosted the party without your help - and Janis's help! Sure, it was just a party - but I hadn't seen you in years, since our Fargo days, and you just stepped right up, showing a similar genorosity and kindness that I see in your sister. Hmmm - sisters. Aren't they grand! I hope you are feeling better each day and if you feel the need for some Southwest relaxation time, feel free to visit anytime. The Littlefields will welcome you with open arms. : ) Yep! New Mexico is an incredibly healing place. In the words of one of my favorite NM poets, Jim Sagel: "Once you have known this land, you will always turn back. Like the exiled lover who could sense his lover combing her hair from a thousand miles away, you will always hear the drum pounding in your pulse, the Llorana weeping in your inner ear, the sand cranes flapping their wings alongside the river in your blood. Once you have taken the unexpected turn, you will never again pass without caring." Much love to you, dear Karen. Peace, annie jane
Hello Karen dear--
I suffered a slip of the tongue today in chem class,and thought that you might enjoy it.
I was attempting to get the class to quiet down, so I said "pooples, quiet down!" I really meant pupils, didn't I? Or did I mean people? Or was it poopies? Well, just call that a Freudian slip.
I am pretty good at combining 2 words, without even thinking!! What a talent!
We hope that you are having lots of laughs. We keep asking for inner strength each day for you! We are backing you. Every day.
Kathy & Maury
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