Rose's Detour

Life's Surprises

2010-07-18T07:03:00.000-07:00

Life is full of surprises and I am here to update you on my latest unexpected surprise. As you may recall from my previous entry, the transplant process was going as well as expected and things were very hopeful. Arrangements had been made for me to exit the transplant clinic and to return to my regular oncologist and begin what would hopefully be a long course of maintenance. I was on day +36 quickly and eagerly approaching the "magic" day +45, when I began to fall into a low energy slump. Since things had been going so well, and slumps of this kind are not uncommon in the recovery process, no one seemed very concerned, nevertheless, they continued to monitor me closely. Shortly after the slump began, it began to get worse. I began running fever and my blood counts seemed to have a mind of their own. More and more tests were administered, all negative, which was great. In the meantime, my oncologist along with the transplant team decided to move the PET scan up by a week to July 2 in order to determine the success of the transplant and to make comparisons to clear CT scans that had been done throughout the process. To everyone's dismay, despite a good transplant, sometime around day +36 a new bout of lymphoma appeared. From what I understand, a recurrence so soon in extremely unlikely.

Working with such a great medical team has kept us on our toes and kept our spirits up as a family. Currently I am still gaining strength back from the transplant and undergoing new rounds of some cutting edge treatment, which I have just begun and seem to be tolerating well. Once this initial treatment is behind us, other options are also available.

Rob continues to be a trooper (now I know where Georgia got her nursing skills), and the girls are here, coming and going between summer activities. We are so blessed with wonderful extended family, countless friends, the amazing St. Anne's community and even people I don't know who have me in their thoughts and prayers. I am grateful to each of you beyond words.

At this time all my energy is going to regaining my strength and working my way through treatments (hopefully with grace and a good nature), so if I don't reply to you, please understand how limited my energy is, but understand I am sending love right back to you from my heart.

Repotting the Rose

2010-06-06T08:28:00.000-07:00

June 6, 2010

As gardens begin to bloom, it is only fitting that my own "repotting"/recovery is finally underway! Today marks Day +27 since my transplant. As of yesterday I have begun to feel more like myself. It's been a long, rough go. I nearly forgot how good it feels to just feel like me.

Once my stem cells were collected and frozen, the transplant process got underway. Since May 3, I have received high dose chemotherapy, twice a day for the first week, and hopefully the last chemo of my lifetime. Now I know why they call it HIGH DOSE. The side effects were dramatic and difficult at best. Two days after the end of the chemo, I received the transplant of my new stem cells, a painless six hour process. Between the effects of the chemo and baby stem cells, my blood counts dropped (to zero in some cases). I had several transfusions for platelets and red blood cells. At one point my platelet count was 5 (normal is 150 to 400). A friend suggested I name those 5 platelets (:

There is no way to begin to describe the profound fatigue, and while there wasn't much pain, the process is extremely exhausting. A week after transplant as predicted, I hit a low. Thankfully Rob, as always, was an amazing support. For the few hours he would get away here and there, I had sweet close friends and family who served as my baby sitters, since I couldn't be left alone. Every day I went to the clinic to get my blood checked, visit with the amazing team of transplant doctors and nurses and more. Every day I came home from the clinic to tired to do anything. All the continued good wishes that I received carried me through those dark days.

By about Day +20, I began to see a slow but steady improvement. The numerous side effects from the chemo began to ebb. Now at Day +27, I only need to go to the clinic a few times a week. My blood counts are coming up. I can no longer name my patelets....there are too many. YAY! I no longer need to take IV fluids at home. My daily pill intake has been reduced from 23 to 16 (still a mouthful, wouldn't you say?). I believe in the next few weeks the line in my chest from which they draw blood and give IV will be removed, and I will begin to make the transition from the transplant team back to my regular oncologist.

Still to come are the PET scan, which I pray will be the "ALL CLEAR" report, and a need to receive new childhood vaccines, since I am basically growing a new immune system. Although no longer completely quarantined, I am still not able to be in big crowds or to travel.

On a brighter note, I have found my way back to my journal, after weeks of not writing; I am reading and beginning to take some short walks around the neighborhood. I am eager to repot this Rose and watch exactly how she blooms!!!

My "Freedom Day" is June 24. That is the 45th day after transplant, a magic number to the transplant doctors. That will allow me July and a good part of August to continue to build my strength and get ready for a new and what is certain to be an awesome school year ahead.

There is still work to do, and I am beginning to blossom again!

What A Difference A Day Makes

2010-04-29T06:55:00.000-07:00

April 29, 2010

GOOD NEWS! The day after my last post I went to the doctor, ready to hear the regimen for the next six-week course of chemotherapy. My doctor told me he had reviewed my most recent CT scan with the radiologist and all his transplant colleagues, and to everyone's surprise, the newest tumors have diminished by at least 50%. This was truly awesome news!

What this means is the six-week chemo is no longer necessary and beginning this Monday,

May 3, we will go straight into the transplant process. I spent yesterday going through preliminary tests---EKG, Echocardiogram, Pulmonary Function, Sinus CT, Chest X-Ray, etc. Monday will begin six days of high dose chemo, twice a day, and on May 10th I will be reinfused with some new juicy, enhanced stem cells! Wow!! Modern science is truly a miracle!!!

The initial recovery will be slow and hopefully steady for the next 45 days. During that time I will be in isolation for the most part with regular visits to the clinic as my only outings. Our house has been "de-germed" and must be plant/flower free. I will be on a neutropenic diet, so Rob, in all his gourmet wisdom, is coming up with some interesting yet appetizing meals, since he is the only one who can prepare my food.

Now more than ever, I ask for your prayers, good wishes, rituals, healing dances, whatever it is you have been sending me that has helped to heal me this far. When this process is finished, I have a 50% chance of a cure--my ultimate hope.

Again, I thank you all for all you do to support me on this path. I feel as if we have been walking it together every step of the way, and I am grateful.....especially to share the news that there IS light at the end of the tunnel, and now it's not so very far away.

Another Step Closer

2010-04-26T11:38:00.000-07:00

April 26, 2010

One month after resuming the blog, there is news to report.

First and foremost many thanks to all of you who continue to carry me along on a sea of love and support as make my way. The process, while rarely painful, is a long one that requires patience I never knew I possessed! Your outpouring of support keeps me grounded and focused and forward thinking always, but especially on days when my patience is wearing thin or when I am feeling less than "tip top". You cannot begin to imagine the power of your collective words, cards, prayers, good wishes, and more. Each of you separately, and all of you together keep me uplifted in ways that cannot be measured. As I find my way to a cure, that victory will belong to all of us.

Shortly after my last entry, I received two more sessions of chemo to help eradicate the pain caused by the tumors that were discovered in January. My body accepted the chemo with relative ease, and the pain was relieved nearly immediately. Once I had a chance to recover from the chemo treatment, the next step was to watch my blood counts to be sure I was healthy enough for the next step. After a week of going to the hospital every morning for my counts, transfusions of platelets and red cells and white cell shots every day, my numbers finally came up high enough to begin the next step.

Last Tuesday and Wednesday my amazing medical team at Presbyterian/St. Luke was able to harvest more than seven million stem cells....yep, 7,000,000! That's more than enough for a transplant. I was able to produce enough cells, so no additional treatments were needed on that front. The best news is the process, which took place just a week ago, now seems like a distant memory and all those juicy stem cells are in the freezer for now. This is a BIG step!

This morning I went for a CT scan to determine what effect the chemotherapy earlier this month had on the existing tumors. Given the outcome of the scan, the next step will be determined. Very likely, I will begin yet another round of chemo to eliminate the existing cancer once and for all!! Once that takes place, the actual transplant process can begin.

There are a couple of things to note here. One is in order to get a strong harvest, the existing cancer couldn't be treated until now. It seems multiple rounds of chemotherapy weaken one's stem cells. The second is that the doctors know my body responds well to chemo. While the next round of chemo will undoubtedly take longer than I would like, if it cleans out the existing cancer before we begin the transplant process, it will be well worth the extra time and effort.

Soon the new chemotherapy will begin. I will continue to keep you posted as my healing process continues. Again, thank you, each and every one of you, for all you do to help me through this detour....much longer than I ever anticipated, but surely with a positive end in sight!

The Long and Winding Road....More Detour...Chapter 2

2010-03-26T12:55:00.000-07:00

As many of you know, on January 18, after a clear CT scan in December, I was diagnosed with a recurrence of lymphoma. The report was overwhelming and disappointing beyond words. I have been reluctant to resume the blog, until I had something positive to report. At last after a rough go of things from the time of diagnosis until last Friday, I finally have a plan in place. I am hopeful and confident that we are on the right track.

When a recurrence happens so quickly the doctors are adamant about treating things more aggressively. So despite an all clear in June. The doctors knew more of the same treatment wouldn't work again. As a result, after more chemo that took place in February and March, I will begin the amazing outpatient process of a stem cell transplant using my own cells. It's wonderful modern sci-fi stuff, that I am confident will give us the outcome we are seeking. Stay tuned for my continued adventures as I make my way to a cure.

Thank you all for your long term, ongoing support, thoughts, prayers, cards and love. I am a firm believer in collective energy and the power it carries. I am confident your good wishes will carry me to a place of health and cure in the days, weeks and months to come. Please keep sending your good "stuff" my way, whatever it may be. I am certain on some level I am soaking it up. It is keeping my spirits high and my faith strong! Many thanks to all of you

Back In The Saddle

2009-09-17T10:32:00.000-07:00

Thursday, September 17, 2009

What a delight it is to report that this will be my last post! I am back at school four half days a week through September, and eager to resume a full time schedule and begin admissions fun in October!

My journey has been filled with so many blessings and opportunities, and I am thrilled to report that I am cancer-free and finished with chemotherapy. Today would have begun my eighth cycle of chemo, had I needed all eight. Thanks to great doctors, a strong constitution, spirit, sense of humor and the support of my family and so many friends and loved ones, I managed to graduate from chemotherapy after six sessions. The last chemo cycle ended right around my birthday, which I am certain was no accident. The celebrations and "ending rituals" were numerous. It was a great feeling to say good-bye to cancer and hello to a new birth year as well as a new school year. Day by day my energy continues to improve. Being back at St. Anne's on a daily basis among the flowers and the children as well as wonderful colleagues is especially energizing indeed. And so, it is with the most profound gratitude and love I sign off! Here's to a wonderful, healthy year ahead!

Full Circle

2009-08-17T15:36:00.000-07:00

With a new school year quickly approaching, I send off this latest update with renewed health and gratitude.

I am happy to report I have completed my sixth and last chemotherapy session and had a "wrap-up" CT scan. The chemo went better than the previous two rounds, and the CT scan was another indicator of the ALL CLEAR! Although my strength and energy still have room for improvement, being healthy, cancer free and able to return to school makes me more grateful that words can express. The start of a new school year is always one of exciting anticipation, but this year in particular, I feel as enthusiastic as any one of the students at St. Anne's.

Trying to harness my energy, rest when I am tired and not overdoing it are my biggest challenges at the moment.

The sweetness and depth of caring I have felt from so many is truly without measure. I continue to be profoundly grateful to all the people who support me so limitlessly. This heartfelt support has given me strength and hope when I needed it most. Now that I have soaked it in and I am healthy again, I have the opportunity to give it back from the heart as the new school year begins.

A Home Run

2009-07-18T08:25:00.000-07:00

Last Thursday I went for my 5th chemo treatment. Before treatment began, I saw my oncologist. He sailed in the door beaming, and said," Mrs. Kelly, you hit a home run. I have never seen anyone respond so well or so quickly to chemotherapy! It's cases like yours that make me want to practice medicine!" HOORAY!

What this means for me is one more chemotherapy in early August, and regular PET scans every three months for a year. Other than that, I will still have to have patience with my fatigue levels and just wait to see what my new hair will look like when it grows back.

The light at the end of the tunnel continues to grow brighter. I am learning soooooo much on this detour, not just about staying present in each moment and knowing change is inevitable, but so much about what love, support and positive thinking can do to get us through the most unexpected, scary moments. I continue to be humbled by all that I have been through, and I am awed and grateful for the amazing support from all of you that has carried me along this path.

Great News!!

2009-06-27T12:07:00.000-07:00

Last Thursday, the 25th, I returned to the Rocky Mountain Cancer Center for my 4th round of chemo. The Thursday prior I underwent my second PET scan. My visit to RMCC was not only to receive the chemo, but to review the results of the PET scan with my oncologist. During my 3rd round of chemo, the doctor ordered the PET scan, saying we could determine the extent of the cancer. I, in my own way, asked, "Do you mean we can determine the extent of the healing?" I was confident the report would be a good one, since I have been feeling better and stronger, and the evidence of cancer in my neck appeared to have been gone for quite a while.

I had no idea when I sat in the infusion room that Dr. Feiner would come racing over to me, so excited, waving my report in his hand....He had it marked with certain passages circled and exclamation points. Rob and I listened as he went over the report while my nurse was drawing blood and starting chemo number 4....

The report states: "NO EVIDENCE OF RESIDUAL DISEASE"! In other words, I am 100% in remission! What a blessing! What a miracle! Even the doctor couldn't believe the extent of and my rate of recovery! Needless to say, Rob and I are overjoyed with the news! Picture me laughing and weeping at the same time.

I am certain all the love and good wishes along the way have helped the process along. I continue to be so grateful to all of you who visit this blog, think about me, send sweet notes, and say prayers. All those good wishes are the most healing medicine of all.

WHAT'S NEXT:

After the great report, and I might add, my blood work is looking healthier and I am gaining strength and energy every day, I will continue with the chemotherapy treatments. I do not have to return to RMCC for another 3 weeks, when I will have round 5 and a future course of treatment will be determined. My doctor is wonderful...he tends to err on the side of caution. To paraphrase his words, we don't want to put all our eggs in the PET scan basket, so the chemo will continue to be sure we haven't missed any microscopic cells that might not have appeared on the scan.

Regardless, of future treatments, I am definitely on the upswing and the beautiful light at the end of this tunnel is shining more brightly than ever.

Three Rounds Down

2009-06-13T17:21:00.000-07:00

On Thursday, June 4 I completed my third round of chemotherapy. Although I would have far preferred to have been at St. Anne's graduation, I was thrilled to get a good report from my wonderful oncologist, Dr. Alan Feiner. The red blood cell count is stronger and other serious concerns are no longer on the radar--truly a blessing. For the first time since April 23, I don't have to return to the Rocky Mountain Cancer Center for a full 3 weeks! As much as I love my doctor and nurses, not having to go back for tests, etc. is great! Despite a pretty dramatic slump, which is expected on days 7, 8 and 9 of the cycle, I am stronger than before and I find myself coming out of the slump with more energy. I continue to tolerate the chemo well, with minimum side effects, although the steroids wind me up and when I go off them, the slump is a true crash. The fatigue is indescribable! Because things look as encouraging as they do, Dr. Feiner has ordered another PET scan for Thursday the 18th. That test will help determine the extent of my healing and the remainder (I hope) of my course of treatment.

I continue to be so grateful to all of you for your ongoing good wishes, notes, cards, energy, and more. Each and every one of you continues to play an important part in my recovery.

Thank You

2009-05-18T10:19:00.000-07:00

To all those who have sent kind thoughts, heartfelt notes, funny get well cards, good wishes, prayers and more, I am most grateful. The collective power of your wonderful support is profound and strong positive healing medicine indeed.

Please know I am overwhelmed by the expansive outpouring of love and support from all of you. Your acts of kindness and your words of love and encouragement mean the world to me. I think of you all everyday, humbly realizing how fortunate I am to be a part of each of you and our wonderful St. Anne's Family.

My Story

2009-05-18T10:15:00.000-07:00

When I left school and headed to yoga at the end of a relatively ordinary day on April eighth, I had no idea the detour my life would take over the next several weeks.

A few weeks prior, I had been suffering from stomach aches-- nothing horrible; it was as if I had done too many sit-ups (and I knew that wasn't the case). I wondered if I had an ulcer, but the stomach aches weren't awful and I wasn't too concerned. By the end of March, when the pain began worsen, I made an appointment with my doctor. At that point, a bump appeared on my neck-- I suspected it was only a swollen gland, in spite of having had a flu shot.

When I went to see the doctor, she thought my symptoms were "quirky" and suggested we keep an eye on things. When I returned ten days later, the stomach pains had peaked and the swelling on my neck was considerably more noticeable. Visiting the doctor that day, I thought I misheard when she said: "I think you have lymphoma."

--DETOUR--

Somehow, we made it through Easter weekend and the following week was consumed with visits to specialists including an outstanding surgeon and an exceptionally talented oncologist. Under the care these doctors and others, I was flung into a variety of procedures: heart scans, cat scans, bone marrow and neck biopsies, a small operation to place a port in my chest for blood work and chemotherapy, and finally a pet scan to determine the extent of the lymphoma.

***

The following week was spent buying wigs, going to "chemo school" sorting out the business of having cancer while dealing with a flood of emotions, and also beginning my first session of chemotherapy.

Road to Recovery

2009-05-18T09:31:00.000-07:00

Presently, I have been through two sessions of chemotherapy to treat B-Cell Lymphoma; which I am told is the best kind to have, if there can be a "good lymphoma."

The doctors and nurses are very encouraged by my response to the chemotherapy, and the tumors have already diminished significantly.

***

Besides losing my hair and having to decide on a new "Rose look" everyday (Yes, I now own a blonde wig), the only side effect I suffer from is fatigue.

I am surrounded with wonderful support from family to friends and an outstanding team of doctors. Having so many members of my extended community cheering me on is humbling, healing, and incredibly uplifting.

The Outlook

2009-05-18T08:56:00.000-07:00

With two chemotherapy sessions completed successfully, I will continue to receive six more treatments, one every three weeks until mid September. Between chemo sessions doctors monitor my blood and halfway through the process a more extensive scan will be conducted to measure my progress.

The outlook is very positive. Having summer to rest and recuperate should allow me to return to school strong and healthy in the fall.

I look forward to the time when we will all be together again.