Holly
April 13
Holly is doing "oompa loompa dupity dawesome"! (sorry, Office reference.). She had a CT scan and oncology appointment and Dr. Dudek is almost ready to use the word CURED!! Holly was lucky to get the new gold standard of chemo for her cancer Diffuse Large B Cell NHL, called R-CHOP . This new combo of Rituxan plus CHOP which has been shown to have a synergistic effect at curing cancer as opposed to just CHOP alone. She is going to have a scan every 6 months for another year, just to be extra cautious given her complicated medical history.
And the wound�it is so small! I wish I had a picture but my camera is in Cottage Gove, don�t ask. The scar is big but there is only one small tunnel which should close within the next month with the vac. Her surgeon is excited for her to get back into the pool and get moving with water aerobics. He says she may deal with recurrence of adhesions but there is absolutely nothing she can do to prevent them so to just enjoy feeling good and deal with it *IF* it happens. Hol is living at home alone again and plans to go back to part-time work within two weeks. Praise God! Happy Spring!
March 4
Holly is doing very well! She is eating small meals and resting at her parents' house in Winona. Her wound seems to be coming along...she sees the surgeon, Dr. Beilman, at the U of M again on 9th for wound care as well as Dr. Dudek, her oncologist. The home nurses that come on M-W-F are very nice and taking good care of her. It's a slow recovery but she is finally having some success eating and that will help tons!
Feb 26
Mom is back in Winona! She went home on Friday and had a good weekend staying with my grandparents. Grandma Audrey is getting her to eat much better than I could. I am trying not to take it personally but when I told Grandma that it must be my cooking, she diplomatically replied �well, you don�t have the time, I'm home all day�. Apparently I should have made boiled dinner with cabbage because it was a hit. I don�t even know what boiled dinner is but I think I prefer sushi. Anyhoo, little Harley�s went outside and sunk into the deep snow and disappeared for a minute but has now resurfaced.
Feb 21
Chicken. Steak. Fish. Egg whites. Power Bars. Ensure. Wound Wonders (smoothie I invented with protein powder, berries, yogurt and cream. I would add in some antibiotics and narcotics, if that were legal. I bet they would sell like crazy in nursing homes). These are things that have protein in them, which Hol *should* eat.
Kool-Aid. Gatorade. Milk. Tomato soup. These are the foods she will �eat� freely.
Water. Egg yolks. Toast. Yogurt. There are things I can force to her to eat.
She has lost 25 pounds and I am worried about her nutrition. On the plus side, it is really helping me kick-start a low carb diet as I eat all of the leftover protein. I took new wound photos today when the nurse was here. We tried a field trip to Target and even though she had the �Rascal� to scoot around on, it was too much. Doctor�s appointment with surgeon tomorrow so they will likely debride the wound and get all that white dead junk out of there. Yes, it smells like it looks but only when it is not packed. The black strings are sutures. By the way, Holly is mortified by half the stuff I write about her. Sorry, I must report the news objectively! Thanks for all the encouraging cards!!!
Feb 19
We took two field trips this weekend! First, to the Grandview Grill to eat with Casey�s girlfriend, Big Hil, and her mom, Kay from Flagstaff. The second trip was to Caribou to sip hot chocolate in front of their fake gas fireplace. Holly followed up both of these excursions by spending the afternoon in the living room (finally off the isolated second floor) in front of our fake gas fireplace, listening to Michael Buble, Gladys Knight & the Pips and the soundtrack from "Joseph and the Amazing Technicolor Dreamcoat".
She also finally feels up to reading so she started Obama�s bio, Dreams of My Father. Trips up and the down stairs are become easier, although not routine. Food is still not her friend. I would say she maybe eats one supermodel sized meal a day, on a good day. Ironically, her surgeon�s clinic is housed in the �Surgical Weight Management� wing so I am wondering if maybe he accidentally gave her a little gastric bypass while was in there, just out of habit? It would explain so much. Anyway, we go to see said doctor on Thursday afternoon. Her hope is to arrange for home healthcare in Winona so she can move back there this weekend, if all goes well. We�ll see how the appointment goes and what the next steps are�
Feb 15
Big News: Holly may have fathered Anna Nicole Smith's baby. More to come...
Feb 13
Jake's dream of having his mother-in-law come and live with him has finally come true. In case he forgets she is here, Holly is sure to beat on the wall with her "grabber" if she ever needs anything. Now he can scratch this wish off his list.
Although the VAC alarm tends go off in the middle night, I have learned to troubleshoot it and get it to quiet down just in time for my alarm clock to go off. At last check, her wound seems to be doing okay and most importantly, she has no fevers!! Unfortunately, her appetite is nonexistent but she really needs protein to heal. I am positive my friends feed their babies more in a day that Holly eats (or "chokes down" as refers to any bite she takes of any cooking I do). Apparently, everything I make is too salty or not salty enough or too cold or hot (which in turn causes a massive chain reaction leading to adding or removing blankets/clothes and adjusting of portable heater/fan). She also has the uncanny ability to taste protein powder in anything. Casey comes over at lunchtime to help her eat and check on her so I can work my normal schedule. Because she is so weak, we need to commission a PT wing on our home hospital as she needs to start walking so she doesn't get so winded after 10 steps. It will all come back, we just have to have patience
On the bright side, I can now get back at Hol for all the transgressions of my childhood. A simple "because I said so" suffices when I ask her to change the channel from Super Nanny so I can catch the latest episode of The Hills on MTV. Or, I like to say "we'll see" when she asks for anything ("we'll see" was always a guaranteed "no"). Lest you think I am abusing my poor mom, she says she is very comfortable and thrilled to be out of the hospital, if not a little bored. Please pray she continues to be infection-free and can eat enough to help her body heal.
Feb 9
On Friday night Hol was released from the hospital!! Her temp was 98 and white blood cell count dropped into the normal range. They think the new wound vac is really helping. After finally getting discharged and all prescriptions written, Casey & I got her up the stairs and settled in at my house. She has her run of the second floor, complete with bedroom suite, private bath, home theater and computer desk (which doubles as dining room table). Her eating is not the best but so far today she did have a blueberry yogurt, glass of 2% milk and small bowl of Cheerios. It is important for her to eat protein so we will be working on that. She is very weak and needs help getting out of bed, using the bathroom and playing racquetball.
The home nurse came today to change the dressing on her wound (WARNING: gross wound photos) and noted it was 19.5 cm long, 9 cm wide and rather deep. Evidently, Holly spent too long in the hospital on the U of M campus, as she has a tunnel in her wound (damn Gophers.) Tunnels are a potential area for infection so this needs to be monitored very closely. Her temp has been in the 99�s today however as long as it less than 101, we don�t need to freak out. We are learning new medical terminology everyday. For example, �skin fold� is the technical term for saying you have a big a roll and �fleshy area� refers to one�s gut. I am so glad I didn�t waste 100K on medical school.
Obviously, coming home is a great step forward, we just hope all goes well and there no midnight dashes to the ER. We were just discussing today how much happier we are debriding wounds and on infection watch rather than stuck in the horrible relaxing calm of Hawaii. How dull and predictable. Winter is for crises and abdominal trauma, everyone knows that.
Feb 7
My Diagnosis? Count Choculitis. She has all the classic symptoms: fever, nausea and counting the days until she can feel better. I don�t think the docs agree.
She had another rough couple of days as she continues to fight off this infection. They were hoping the second surgery to clean it out would do the trick but I don�t think it has. She is not on IV antibiotics right now but I think that is the next step. Holly threw up all night for the past two nights, is not eating anything and barely walking. The aid did help her take a real shower yesterday and her pain is finally being managed properly. The Big Guy doc keeps coming and digging his chubby hand into the wound. Seriously, he has thick hands and stumpy fingers so it seems weird that he is a surgeon since one would think it requires a delicate touch. Maybe not? As long as he knows what he is doing. Anyway, she is probably getting her VAC wound therapy today but it's hard to say since things tend to move to slowly. She got a new IV line as she now needs at least IV fluids, maybe more...
Feb 5
During the night Holly had, well I won�t call it emergency surgery, rather impromptu surgery to clean out an infection in her wound. The CT scan showed an abscess suspected and they wasted no time cleaning 'er out. I know before I said the wound was gaping but I was wrong! Now is it WIDE open, like a gorge or a canyon, whichever is worse. It really scary and hard to see something that raw on your mom. I have no idea what her white count is or if she has a temp or what the plan is because whenever I am there, there is no one around. So, I guess they are going to put some kind of vacuum/drain in the wound to suck it closed and she will have to wear a battery pack for it 24 hours a day and need a nurse to clean it out 3 times a week once she gets home (so I am off the hook). They are not giving her enough pains meds orally, less than what she normally takes for her chronic back pain, let alone enough for a wide-open gut. Hol has plans to give a good talking to her surgeons, The Big Guy and Newbie. The Big Guy said he would write for more pain meds but then Newbie actually wrote for less. She actually has a great pain management doc at the U who we may call in to get her dosing straight. He shall henceforth be known as Dr. O. Contin.
She had a very hard day of feeling hopeless, scared and in pain. You would think this whole hospital crisis would get easier the second time around but actually, it is worse because you know enough to freak out and your patience is gone. Sorry, it was a hard day for all but in reality a step forward as the infection is being addressed and will soon be nothing but a discarded specimen on the lab floor (as they say, I'm sure?). This is all very Grey�s Anatomy except the shows sucks if you are the patient. I would rather be Dr. Yang or Dr. Addison Montgomery because they have great hair.
Feb 4th
Okay, so some things have improved: Momsy has been allowed to eat and drink and they actually removed all tubes in preparation for letting her go home today. However, as Holly�s Law would have it, it now appears she has some sort of infection!
The doctors are worried about an abscess or even sepsis as her white count is rising (it was 12K, then 16K and was up again today) and her fever stays around 99-100. Holly is very desperate to get OUT but obviously she has to be healthy enough to do that. Right now she is having a CT scan to look for infection and then, if need be, they will put a tube in there to drain it and start again with the IV antibiotics. But, they can�t do any of this until they find the GD (as Michael Scott would say) infection.
She has been in the joint a full two weeks now so all the novelty has worn off, although the nurses are still awesome. She has been able to eat some oatmeal, ice cream and milk but otherwise the whole GI thing isn�t exactly in high gear. Holly is also having pain problems as they try to get her meds dosed correctly orally, plus the acid reflux is back causing some nausea & vomiting. One fun thing is that I have been going out there early every morning to help her get cleaned up for the day by helping her give herself a sponge bath, get her hair did, change gowns and go for a walk. Get this: I am such a good nurse-in-training that they even showed me how to pack her gaping open wound with gauze by shoving it in the deep hole with a long Q-tip. Not for the weak as you can see into the wound and it looks like raw hamburger. Culver's anyone? WARNING actual photos of incision 10 days post op
I have no idea who reads this (other me & Hol) so hi to anyone who got this far and sorry for all the typos. Needless to say, our Hawaii trip is postponed, probably until April (Casey and his girlfriend, Big Hil, along with Jake & I plan to go). I wonder how her incision will look in the grass hula skirt?
You can reach Holly at:
University of Minnesota Medical Center
420 Delaware Street SE
Floor 7C
Minneapolis, MN 55455
612-273-0753
Jan 31
Progress is slow! The plumbing is still not working as her body is in shock from the big surgery resulting in high blood pressure and a fast heart rate. She has the pesky NG tube in her nose and can not eat until all systems are a go, so she is on TPN. She has a had few low-grade temp spikes and her white count is up a bit, so we are keeping our eye on that. Overall, she is remaining very active with lots of walks down the hall to watch the activities on the river & planes flying overhead, doing PT & OT and sitting in her chair for a daily dose of Regis & Kelly, The View, Dr. Phil and finally, Oprah. But man, it sure is boring. As this stay drags on, little concerns pop up everyday but hopefully she will feel better soon.
Jan 28th, 2007
Holly is doing well! No fever or other complications, so far. She walked down the hallway and has been sitting in a chair. Her incision is about 16" long and is open to avoid infection so it is pretty gnarly looking. Now they are waiting for her bowels to start working. How embarrassing to have people writing about your bowels on a website...sorry! She is in room 404 on 7C at University of Minnesota Medical Center (phone number is 612-273-0753). Feel free to call & chat. She is still hooked up to lots of tubes: TPN, NG (nose hose), IV, Foley cath etc. but hopefully some of those will go away soon.
Jan 25th, 2007
On Wednesday, January 24, Holly went in for an exploratory surgery to remove a bowel obstruction. The surgery took 9 long hours and was very invasive as the surgeons found a web of adhesions (scar tissue) sticking many of her organs and bowels together. Adhesions are a common complication of previous abdominal surgery. Her lower right bowel was adhered to a screw in her upper left vertebrae. Her surgeons thought she must have had serious chronic abdominal pain for a long time (she complained of it sometimes but most of her pain was in her back). It took them 3 hours to simply untangle her bowels to see what was what. They resected two 10" portions of her small bowel and used sharp and dull instrumentation to scrape adhesions off her organs. She is in a lot of pain right now and is still in the ICU. She off the vent and awake but not very happy. Holly will spend 10-14 days in the hospital and then take several more weeks to recover. Hopefully, she will make a full recovery and maybe even have less chronic pain, even back pain, on a daily basis although adhesions to tend to grow back.
This has delayed our Hawaii trip but will just try to go in April.
Please pray that Holly stays clear of infections and other common complications!!
Jan 23, 2007
Holly is in the hospital with an obstructed small bowel, a very painful condition. The doctors believe it is from adhesions or scar tissue which have formed from her previous surgeries. The adhesions seem to be wrapped around her small bowel. On Monday, January 22 Holly was transfered by ambulance from Winona to UMMC in Minneapolis. She is in pain but it is being managed right now, finally. The plan to is wait to and see... wait to see if she gets a fever or infection or worse pain and if so, they then will likely do surgery to cut out all the adhesions (but they will prob grow back). Otherwise, we are waiting to see if this resolves on it's own without surgery ,although that may not happen. She has an NG tube draining her tummy and an IV for meds and she is NPO. She feels good being here where the docs know her history and have lots of experience w/ complicated abdominal surgeries (if need be). Let's hope it's a short stay...
January, 2007
Holly's endoscopy showed severe acid reflux, a hiatal hernia and possible Barrett's esophagus (a pre-cancerous condition). She really needs to focus on healthy eating & weight loss along with medication to resolve this issue. The test did not reveal anything about the enlarged lymph nodes. The GI doc wants to repeat this test in 2 months so see if the Nexium helps before doing a biopsy, as there is too much inflammation to get an accurate result now. We will wait until the next CT in March for word on the lymph nodes... Next month the entire family is going to Hawaii!
December, 2006
Holly's latest CT scan showed 2 enlarged lymph nodes near her esophogus that the onc, Dr. Dudek, is worried about. He first thought we should rescan in 3 months but since she is having such bad acid reflux, he ordered an upper endoscopy and biopsy for next month. Hopefully, the nodes are just inflammed due to the acid reflux, but he needs to be certain. She is now taking Nexium which is already helping (her insurance stopped coverage on Aciphex which was the only drug that was helping). Yuck and ick!
June 2006
By the way, Holly is doing well! She is working part-time as a florist again at Heart's Desire which is her real talent (although her back pain is constant so she can't stand very long or work a full day). Her health is very steady and she only gets CT scans every 6 months now which is a relief. She uses a cane and needs a lot of rest but otherwise is enjoying life. God is good! March 2005
HELLO EVERYONE....
IT'S 2 YEARS SINCE MY LAST CHEMOTHERAPY AND ALL IS WELL !!! MY THANKS TO EVERYONE FOR THE CONSTANT SUPPORT AND LOVE AND MOST OF ALL... PATIENCE WITH ME AND MY ACHES AND PAINS.
LOVE YOU ALL.
Holly
January 21st, 2005
Great check-up! Blood work and CT scan are normal. Holly will wait until June for her next scan. Each clear check-up is one step closer to a cure. Of course, her back is still very feisty and she battles fatigue (not "battle fatigues") but otherwise life is back to normal as she even has Rags home again! In vacation news, the whole family is heading off to Hawaii next month for Wendy & Randy�s wedding. ~~Aloha~~
August 2004:
She's in the news! Winona's Persons of Hope
January? January! Hol's latest CT scan was clear! Dr. Dudek does not need to see her until January 21, 2005 which is according my calculations, next year! She is two years out from her diagnosis date so she is past the most critical point. If her cancer was going to come back the odds are it would have happened by now. Yay!! He said that if anything were to grow now (which is very unlikely) it is would take at least 6 month to show up. She will still go in every 6 months for CT scans and check-ups. Her broken ankle is healing which is good news for the economy since that heavy cast caused retail sales to be down in MN by at least 20%. It's great that not all of us sit home worrying about saving for retirement.
Holly had a great trip to OH with her sisters! They went to visit long-lost relatives (Grandma Dorothy's family). Chemo Brain was in full effect as she forgot to pack shirts for her vacation but did remember 4 pairs of pajamas. Chemo Brain, for those of you who don't' know or haven't see the T-shirt, is a medical condition resulting in memory failure caused by chemo. It is also a great excuse anytime you say or do something dumb. Hol's back is still unruly and she suffers from some fatigue but hey, she's here! She is at her best early in the day so her doc agrees that she should try to work earlier when she is in better shape.
Holly celebrated her 51st birthday on August 25th. She has big plans to go raspberry picking and make soups this fall. She will also be continuing to follow the Weight Watcher program since healthy body weight and good nutrition are very important. She will be speaking at Winona's Rivertown Shuffle on September 17 as she is a Person of Hope for the American Cancer Society. She will also speak at the Leukemia & Lymphoma's Society Pasta Party as the Team Honoree before the Twin Cities Marathon on October 2. She is honored to be involved with both organizations!
That's all for now! Thanks for your thoughts and prayers!
July 2004:
We had a great trip to California! We saw San Francisco- ate on the wharf, took a ferry over to Alcatraz and shopped Chinatown. Then, we drove down to Anaheim to go to Disneyland. Finally, we visited San Diego, enjoyed the beaches and went to a fun wedding. Hol did okay at first until she had some medication mix ups which lead to a nasty fall at the Giants game where she broke her ankle. She also took a spill in Old Town and gashed her head. Let's just say it was fun but not totally relaxing. She's okay now - she has a hard cast on her ankle but she's seen worse. She is still working on balance and strength. It was wonderful to travel to CA to celebrate her recovery and Jake's and Liz's birthdays!! Hol heads to Ohio in a few weeks to visit relatives and has a scan when she gets back. She is feeling good and that's the most important thing! Here's to summer!
May 2004:
Yay!!! Another clear CT scan!!!
The checkup went well! First, Holly went to the Pain Clinic where they did a thorough evaluation and offered some good suggestions for reducing pain. She has bone pain, nerve pain and muscle spasms. Dr. Zeller suggested more PT (myofacial release) and some medication changes. After that, Holly had her CT scan. Then, since we had some time to burn before the next appointment, we went to Grand Avenue to enjoy a lunch at Caf� Latt� and do some window shopping. She was nervous before her appointment but as soon as Dr. Dudek came in and said �Everything is good!�, we were both relieved!. After that happy appointment, we stopped by 7D to say hello to our favorite nurses and docs. What more could we want?
Since the last update in February, Holly has stopped using the cane and returned to working full time (which is going fine, although she is super tired at the end of the day). She banged up her face on a nasty fall yesterday on the front steps and broke her new glasses. Her crooked nose was even set straight. She blames it on her new shoes. Needless to say, she wasn�t thrilled about walking around all black /blue/ scabby today, but hey, she�s seen worse!
We are all looking forward to a wonderful summer! In July, Hol, Jake & I, Steve & Liz, and Ellen (Jake�s parents and sister) are planning a 10 day trip to California to travel the coast, something that once seem liked it would never happened. In fact, Hol will be more mobile that I am, as I am still plantar fasciitis girl. In August, Holly will also travel Youngstown, Ohio with her sisters, Jill, Tracy and Wendy, to see their cousins and relatives. Casey got a job at Wells Fargo that he likes, Papa Michael and Grandma Audrey are keeping on eye on Mom in Winona and Rags just celebrated his 15th birthday (that�s 105 in dog years, people)!
Finally, Holly has been chosen to be the Person of Hope for the American Cancer Society�s annual Rivertown Shuffle walk in Winona. She will even give a speech! She is also the Team Honoree for the MN Leukemia & Lymphoma Society for the Fall marathoners. Jake is training for the Twin Cities marathon so she will be his official honoree. She looks forward to meeting the team at the July 24th picnic!
Thanks for all your payers and well-wishes �they worked!
February 2004:
Great news! Another clean scan! We are very thankful that Holly is beating this disease!
Her weight is creeping up as is her blood pressure, but she going to try to cut out the sugar and junk. She oftens find it too much work to cook anything healthy. Overall health, especially heart health, is very important after chemo. She has an itchy fungal rash on her back too, so hopefully the cream will help. Otherwise, it was a thoroughly happy check-up. Hol also stopped up to see the awesome nurses from 7D while at the hospital - she misses them because they were the best when she was so sick. Finally, Holly goes to see her ortho doctor in a few weeks. Her back pain is still bad but she is on lots of meds to help control that. Despite a total wipe out in her driveway yesterday, she didn't seem to do any lasting damage to her poor back.
Holly is also the Honoree for the MN Leukemia & Lymphoma Society's Team in Training spring marathon runners. Like Jake and I last year, these also fabulous people are training to run a marathon to raise money for blood related cancers. Holly recently went to a run at Lake Harriet to cheer on the runners and thank them for their efforts. She feels very honored to give inspiration to others and show people that surviving cancer is possible!
Life has been wonderfully uneventful! Poochie Palbicki, formerly known as Rags (Holly's dog), continues to live with us because his mom is just not capable of taking care of him yet ( he is high maintenance). After over 18 months with us, Jake has finally taught him to sit. Old Poochie will be celebrating his 15th dog birthday this spring. Casey is continuing to look for a job after graduation and the rest of the family is just happy everyone is healthy!
December 2003:
She's going strong! Hol is doing just fine! We are enjoying this holiday season so much more than the last. Her back is still miserable but she's coping. She hasn't been able to see her back doctor in awhile because he retired and the new doctor just started seeing patients however she needs to call get an appointment, doesn't she... Mom? Otherwise, she is just trying to build up her still weak endurance and energy levels but overall she is very well.
In yet another miracle, Casey graduated from the U of M with a degree in Studies in Cinema & Media Culture this weekend! Bill& Linda threw him a great party complete with his favorite foods, crab rangoon and Chipotle burritos. He is planning a trip to Cancun next month to celebrate. Then, he will be looking for a job. Way to go!
November 2003:
More great news! CT scan was all clear!!!! Dr. Dudek came in and said "I'm happy to report fantastic news, everything is fine!". We are thrilled! Her white blood cell count is still on the low side which means she has to be very careful about infection. She discussed other issues such as fatigue, back pain, mobility, etc. She was so happy she barley cared that her van stalled out and needed a new battery before she could even drive back to Winona. Thanks to everyone for all for your prayers and positive energy!!
Mom spent the weekend in town. We did some shopping for card materials and Christmas presents. It was the first time she was able to spent a night at my house since she was sick because she can finally get up the stairs with some help. It was great! She will continue to make cards, knit and enjoy the holidays this year!
In other news, Jake completed the marathon in 4:04. He had many people tell him they would 'Pray for Holly' and he was interviewed by a news guy on a motorcycle asking who Holly is and why he was running. Holly is going to the official Team Honoree for Spring '04 Teams in Training. She will be asked to correspond with and encourage the team members as well as attend TNT events. See the Leukemia & Lymphoma Society press release below:
$101,000 RAISED FOR CANCER RESEARCH AT THE DUBLIN MARATHON
November 14, 2003---Twenty-two individuals from the Minnesota Chapter of The Leukemia & Lymphoma Society's Team In Training (TNT) participated in the Dublin Marathon on October 27 and raised over $101,000 to be used for the Society's research and patient services programs. The funds they raised are part of a total of $1.7 million raised at the Dublin Marathon from 401 TNT participants from 25 chapters of The Leukemia & Lymphoma Society nationwide.
Participants trained and fundraised in honor of the Team Honoree, Mikey a survivor of acute lymphocytic leukemia (ALL), and their personal honorees. Team In Training participants Jake and Megan Seltz became involved in Team In Training to honor Megan's mom, Holly Palbicki, who was diagnosed with non-hodgkins lymphoma close to one year before the 2003 Dublin Marathon. Palbicki stated, "The incredible determination and all the fundraising they have done just to run this marathon makes me appreciate their efforts and the efforts of the whole team all the more. The importance of the funds raised for research and cures has hit home for me. I hope and pray that a cure for all is in sight soon."
October 2003:
Hollister is feeling pretty good and getting stronger. Afternoon naps and early bedtimes are a must, however she is pretty energetic in the mornings. As always, her back is painful but that's why the good doctors invented narcotics. She is still working on posture and balance. Hol's appetite is back, just ask the folks at Mugby Junction and Acoustic Cafe:)- She likes being back at work part-time and having a more structured schedule. She has put together a great portfolio of homemade greeting cards and hopes to begin selling them to raise money for cancer research. In other news, she got a cell phone and has almost figured out how to use it. Her next scan is November 15, so please, cross your fingers and toes for luck~!!!
Your faithful (and injured) narrator and her husband, Jake, are leaving for Ireland this week where Jake will run 26.2 miles in honor of Holly. We have raised over $9,600 with Team In Training for the Leukemia & Lymphoma Society!! Thank you to all who donated and take care of my mom while I'm gone!!
September 2003: Holly is back in her own home and back at work! She moved home about three weeks ago and is doing just fine. She has a "Help, I've fallen and I can't get up" necklace, just in case. She doesn't do stairs alone but otherwise is normal. Last weekend we cooked chili, tatertot hotdish and a turkey dinner, so she would have leftovers for supper. She started working half days. She is tired but she likes being back. Luckily, physical therapy and pain meds are helping her back pain, as is Seltz's hottub. Hol's card making is going great...her cards look professional! She is very creative making cards with beads, ribbons, stamps and special papers. She plans to sell them and donate the profits to the American Cancer Society. We are also knitting ( well, she knits, I knot) prayer shawls for cancer patients and we walked in the Rivertown Shuffle (a cancer event) last weekend and saw luminaries in honor of Holly and in memory of her mom, Barb. We are so thankful and appreciative of Holly's return to health! Prayers for a cure for all!
August 2003: CONTINUED REMISSION! Holly had her 6 month post chemo check-up and CT scan...all clear! She is good for another 3,000 miles. She will return to the oncologist in 3 months. Her 4 month check up with her back doctor went well too. He says that the pain is normal and it takes a very long time for bones to heal together. He was impressed with her progress and how far she has come from those long months in the hospital. She will continue with X-rays and CT's to monitor her progress.
Holly's 50th surprise birthday party was a success! She was completely shocked! We enjoyed a hot day outside but she was treated to bad singing and even worse dancing before opening her presents and eating cake. Last Sunday she got a facial at Juut but on her way to lunch at Cafe Latte, she took a nasty fall on the concrete. She only got scratched up and a little bruised but did not appear to hurt her back. She has spent the past week staying with Tracy and doing some shopping. She is just happy to be on her way to full health!
August 7: It was last year at this same time mom found out she had cancer and was preparing to have surgery. This past year she has been through 4 major surgeries, 6 rounds of chemo and months of being very sick. Today she is doing worlds better thanks to God's grace. Looking back it seems like a nightmare but we have learned many important lessons about faith, love and survival. These days Hol is driving, visiting friends and, as always, still preparing to move into her own house. Casey and I are going down this weekend to help her get set up however she is looking at the end of August to move home. She plans to visit the cities this months for a doctor's appointment (ortho doc), to wheel around the State Fair and to hang out. Her back pain is still a big issue as is extreme fatigue but we can see her gaining strength weekly and her PT is helping her deal with the back pain. Overall, she is doing fabulously. We pray for continued remission and healing. Thanks to everyone who has supported Holly and our family!
July 8: Holly continues to improve! She is spending this week hanging out with her sisters in the cities. Life is getting more normal for her although she is still very fatigued and has a lot of back pain. She does pretty well for a few hours but then needs to lay down to rest her back which aches once she does too much. She is still on narcotics for pain but is trying to supplement them with Tylenol 3. Her eating is great, yet another miracle. She has done some shopping for new clothes as all of her old clothes do not come close to fitting. She is very anxious to move back to her house but is still not strong enough to handle the housework, cooking, and shopping that come along with it. Plus, it is nice to know she has people with her to make sure she is okay. Otherwise, she fills her days by taking short trips out of the house, doing her exercises, knitting, reading magazines, looking at photos, watching the Twins and napping. Hol even went to church once at St. Stan's but the pews were not very vertabrectomy recovery friendly. She has been trying to check her email but she over 5,000 messages (mostly junk) and they take too long to download. She is doing her best to get back on feet...she will do it!!
June 17: Holly had her 3 month check up with ner new oncologist, Dr. Nakajima, yesterday (Sadly, Dr. Okazaki is moving back to Hawaii). He reviewed her scan, checked her bloodwork and did a physical exam. He said she is doing great! He says the extreme fatigue and lack of energy are normal for any cancer patient, but especially so for someone who was stuck in bed for so long. The next year will be very important as she needs check ups every three months. We hope for nothing but good news from here on out!
Other than that, she is doing very well. She has far more good days than bad although the good days are nowhere near normal. She is eating much better, maintaining the same weight for over a month. Little trips out of the house are not uncommon. She is getting very anxious to move back home although she is not ready for that just yet. We hope that she can slowly transition back into normal life and enjoy the summer.
June 8: We had a scare the other night. Holly was having stabbing pains under her right ribs for the past few days. She said it was the same pain she had on the left side with her first tumor. Knowing that all the good organs she has left are on the right side, we were very worried. She thought the pain could be related to her back. We were concerned at the thought of a reoccurrence and because she was only in town near her doctors for a couple days, we went to the ER. The ER doc was concerned because her pain was near her liver. He did blood work, chest x-rays and a CT scan and much to our relief, he found nothing! So, she is trying to take it easy with her back and see how she feels. Despite the anxiety, she got her 3-month scan done and it was clean! Yay!!
Otherwise, she is just plain tired. Jill and Dale got married this weekend and she did the bouquets for the wedding, which were very beautiful. She also got a chance to visit with her relatives from Ohio and to meet a lot of people that have been rooting for her from afar. She plans to take it easy this week and use the walker outside instead of the cane which is causing her to lean, hurting her back.
May 29: Not much is new besides the fact that Holly was finally able to stop by her own house for the first time since last August. She said it was weird to be there again. One might think things were just the way they were left but Fairview Hospital bags, lots of presents and items of Grandma Barb's were everywhere. We plan to give her house very thorough cleaning and reorganization before she goes home for good (when will that be?). She weighed herself and was happy to report that she is maintaining, not losing, weight. Otherwise, it's the ever present need to practice walking, to eat and to heal. Overall, she is making great strides, it just takes time
May 23:Mom had a check-up with Dr. Ogilvie, her orthopedic surgeon, and he says her X-rays looked good and time will tell how her back will heal but he is very optimistic. Due to her complicated medical history and the effects of chemo, he was concerned about how well her bones can heal. I worry about a lot of things (that's an understatement) but her bones healing is not of them. She is a tough cookie! Otherwise, Holly is improving. She attended her sister Jill's bridal shower in St. Paul at Paint Your Plate and painted the prettiest plate there... then we even went out for lunch. She has been keeping busy with doctor's appointments, reading Al's book, walking outside and of course, TV. She is thinking about trying to knit again (see the 8 foot scarf of Christmas past). It is so wonderful to see her easing back into normal activities. She hopes to attend the annual family Memorial Day get together in Rollingstone which involves a service and walk at the cemetery. Hmm... should be interesting taking the wheelchair on those hills!
May 15: Hol had a good check up yesterday with her regular doctor. Although we worry she is getting too skinny, she did gain 2 pounds this week which is great! She has been eating small portions of toast with picante sauce, 1/2 sandwiches with onions, polska kielbasa, mashed potatoes, chicken, fruit, ice cream, milk, tea and last night even pizza. She's working on it but's hard to see her so thin. Keep eating lady! Mom is taking short daily walks up the block and back with Papa's assistance and doing more self-care activities alone. She is even reducing her pain meds regularly. Cubby is so sick of of watching TV but still enjoys the Twins baseball games. Next week she has a check up with her back doctor to see how the fusion is healing. Hair hasn't grown much more but it's coming back. So far, so good!
May 7: Hol continues to do well! She is showing off by sitting in a chair in the living room the most of the day, getting up to walk to the next room alone, getting dressed by herself and generally feeling better. The aid still comes three times a week to help with bathing and anything else she needs. Mom has a very difficult time waking up in the morning because she is sleeping so hard. Eating could be going better as she struggles to get in three small meals a day. Who needs food, right? She is looking forward to having family in town this weekend and going up to St. Paul next weekend for Jill's wedding shower.
April 28: She is done! Holly is in Winona! She is staying at her Dad's house for a few more months but once she is settled, I'm sure she would appreciate company and phone calls. Tracy and Jill went shopping for her and she has cute, new (small!) spring clothes to model. She is still spending a lot of time in bed but trying to be up more. Her walking in getting stronger and more upright. She told me "next time you see me, I will be running a marathon". Watch out for the walker! We will be coming to Winona often to visit, help out and hopefully get her out of the house for an hour or so too. It is finally recovery time...we pray for continued health, happiness and hair growth!
April 23: She's turning into a shopping queen! Cubby got ahold of a Coldwater Creek catalog along with others and has been busy picking out new clothes to order. She has lost so much weight that none of her old clothes fit anymore and since she is finally feeling better, good enough to start getting out of pajamas, it's time to shop. PT is going extremely well, she walked the hall back to her room yesterday (still with the walker) and is practicing stairs. She met with her oncologist for a check up and he was very happy with her progress. No new scans until mid June. Mom will be coming back to Winona on Monday, this time for good! Of course it will take many, many months to get back to normal but at least she doesn't have anymore chemo or surgeries to set her back. We are very thankful!
April 18: Holly is doing pretty well. Pain seems to finaly be manageable. She is at rehab doing things like taking baby steps sideways, walking to the hallway and back, and learning to get dressed by herself. I hope that soon she will move in the big PT room to practice walking, stairs and even more sitting. Currnently, she is still in bed 95% of the time. Her appetite is good, too bad the food isn't. Plus, she is growing hair. It's just stubble now, but almost 1/4 inch long.
April 11: Cubby is doing okay. She had one very painful night as it took awhile to find the right amount of pain meds to keep her comfortable. However, after they upped her meds, her breathing slowed to a dangerous level so they had to back off. Proper pain management is an art form, I guess. She is very loopy now but we would rather have her this way that miserable. She sat up two times today and yesterday and even took a few steps. She says she feels "like a bag of bones" without her brace. She has been running a temp but they say it is too early to be infection, it is likley due to her shallow breathing. The cultures have been negative but they will keep a close eye on it (me too). Her eating is okay, still all liquids (soups, ice cream, milk). She will be in the hospital all weekend and hopefully transfered to rehab early next week.
April 9: Holly's surgery went really well! It started late but was shorter than expected. She was in recovery for over three hours because they had a hard time getting her pain under control as she has developed a high tolerance to narcotics. We didn't get to see her until after 9 last night but she was pretty aware. Jill asked "Holly, where are we going?" ...she said, "We're going to Disney World!" The doctor said she had good "bone stock" so at this point she will not have to wear her brace anymore. He took a bone graft from her spine and inserted in between the vertabrae and then stabilized it with instrumentation. It will take many months for the bone to heal. She can however sleep on her side and her stomach, things she hasn't been able to do since last August. She was very happy to hear that! Dr. Ogilvie expected her to be up in a chair today and walking soon after! He said he doesn't want her to twist, so golfing is out. (there wasn't much danger that that would happen anyway!) We expect that she will be in the hospital for up to 5 days and then maybe a little time down the block at Rehab. Thank you for all of your support and prayers. We had another angel pulling for Holly this time...her mom, Barb!
April 7: Posterior Spinal Fusion back surgery is tomorrow at 1:00 pm. Any postive thoughts, energy and prayers are appreciated! Hol is as ready as she is going to be considering she can't get much stronger until her back is stable.
March 31: Hol is hanging in there. She is getting up about 3 times a day for short walks and sitting for some time too. She would try to be more active but fear of her unstable back makes it hard. Jake's dad, Steve, who is a physical therapist, is working with her regularly. Her eating continues to improve and Papa and Grandma try hard to help her get in extra calories by using real butter and making her drink "nectar"(a.k.a. Kool-Aid). While the thought of more hospital time is not appealing, we are hesitantly looking forward to next week when the surgeon can stabilize her back so she can start a full fledged recovery. They expect her to be in the hospital for 3-5 days and then we expect some more time at rehab. Mom is quite bored and still very tired but already dreaming of shopping, eating and getting back to normal life.
March 24: Scans looked good! Holly is in remission! We are so happy! The scar tissue is still there but at this point, that is all it, nothing to worry about. Now she has two weeks to work on nutrition and carefully work on building strength before the back surgery. She is feeling okay and has been eating small meals too. Thanks to God, doctors, family and friends that we have reached this day!
March 20: Holly's back surgery for "posterior instrumentation" will be on April 8th. The surgeon is anxious to conduct the 3 hour surgery because the rods in her back are being stressed and her spine is unstable. However, this urgency has to be balanced with her recovery from chemo. Due to the compromised state of her immune system from chemo and radiation, she is at increased risk for infection and slowed healing of the bone graft. She needs to be extra careful with her back in the next two week and do her best to eat and help her immune system recover. Please keep Holly in your prayers as she readies for this final obstacle on her path of healing. Scans are tomorrow.
March 17: Hol is home again. She spent 5 days in the hospital getting antibiotics and fluids. The cultures did not grow anything, so they suspect is was a virus. Her temp is still up and down, but only low grade. She is struggling to eat enough each day but she is trying. Let's hope she can hang in there all week until Friday when she needs to come back for her CT and PET scans.
March 11: So close! Last night Hol had to go the Winona ER due to another fever! They started her on some antibiotics then called her docs here at the U who requested she come back to the FUMC. Papa and Bruce drove her up in the middle of the night. So, she's back! Her temp is down and she is doing just fine. She didn't sleep all night so she is extra tired and nauseated again. They are going to grow out the cultures and keep an eye on her for a few days.
March 10: Holly is in Winona with her parents. So far, things have gone fine, although she is feeling pretty tired and sick. This is her low point after chemo which lasts usually around a week. She is giving herself 2 shots a day in the belly, one to boost her white blood cell count and the other is a blood thinner because of the blood clot in her arm. A nurse comes to the house 3 times week to take her blood and check on her, a home health aid comes 2 times a week to help with bathing and other personal care activities, and PT will come 3 times a week. Plus, Jake's dad, Steve, will help with PT on the off days. As her doctor once said, "You are a complicated lady!" Grandma Audrey made Mom a leg pillow which she really likes because it takes pressure off of her back. As if the pillow is not enough, Grandma is cooking homeade meals for Mom ( no more hospital chow). She is eating very small meals and resting in bed most of the time. Hopefully, this low will pass quickly and she can enjoy being out of the hospital.
March 5: Holly is doing well! No terrible side effects from the chemo this time around. It is strange because each round was so different. Of course, she is on steroids, so we can expect somewhat of a crash as her counts go down but hopefully it won't be too bad. The plan, for real this time, is for her to stay at Papa Michael and Grandma Audrey's house as of Friday. Providing any unexpected events, she should be independent enough and eating well enough to get out of the hospital. Keep it up Cubby!
March 3: Today is the last round of chemo! We hope it will go smoothly. Cubby has been eating okay, about half of every meal. So far it has been enough to keep her off the TPN. IF she can stay off and this week goes smoothly, we will be very, very happy. She will be having a consult with the orthopedic surgeon this week to plan for her final back surgery in about a month or so. She is nervous about chemo but ready to be done!
February 24: She's eating and off the TPN! Yes, it is a miracle and I am still holding my breath but so far, so good. Last week she had another pesky infection and then a blood clot forced them to remove her PICC line, which stopped the TPN and started her eating! She is finally feeling good! Our plan has changed a bit, she will stay at rehab until chemo next Monday. It is easier than moving her to Winona for just a few days. However, after chemo she will be on her to Winona.
February 19: It looks like Holly will be coming back to Winona next Tuesday. Insurance will no longer cover her stay at rehab, so she is being discontinued. Obviously this is stressful for us because she still needs so much care, practically around the clock which is more than Papa can give her. So, we are looking at facilities that offer nursing care in Winona. No one is happy about this decision but we all agree, even mom, that until she can eat on her own, walk to the bathroom safely and get her brace on better, she can't be at home. This is a short-term situation and she will get strong enough to come home, hopefully sooner rather than later. In the meantime, we hope she will get to see some new faces! Only one more round of chemo, then she will have approximately six weeks to recover before her final back surgery. Insurance will kick in for her hospital stays, thank goodness. Mom seems very motivated to start having better days.
A big Thank You to everyone at the Winona Clinic for the money raised at your Chili & Jeans Day fundraiser!! It is very helpful during this hard time!
February 15: Holly moved back over to rehab again. She had a bad week. She fell twice although family members were there both times to break her fall and lower her to the ground. Getting her back up is the hard part! Luckily she didn't hurt anything although this reinforces how weak and unsteady she is. She also hasn't eaten or gotten up and has been extra nauseated all week. Everyone from family, friends, doctors, nurses, social workers etc. are trying hard to keep her motivated but we are all frustrated at how slow progress is. Seven months in the hospital has made it so hard for her do or even want to do the simple things in life. Plus, regular doses of chemo and another upcoming back surgery don't help. The doctors remind us that she will get better and things actually are good, except for never ending fact that she feels so bad all the time.
February 13: Mom is not feeling so hot... she is very sick, probably from the chemo. Of course it may be the flu too. No temperature and they are monitoring her blood counts. She feels pretty crappy but they are working on keeping her comfortable. Hopefully, she will feel better in a day or two.
February 10: Wonderful news...Holly's CT scan is clear except for some connective tissue by her liver which Dr. Okazaki thinks is just scarring. We are beyond happy and thankful to God that the chemo is working! After an exhausting weekend, we have realized that she is not ready to come home yet, so we are working with the social worker to find a good place for her to stay until she is more independent. Holly agrees that she is not strong enough or independent enough to stay at Papa's just yet. It will take lots of time until she is back to normal...more chemo tonight.
February 8: Casey's 22nd birthday!! Hol had an okay week although she has a bad case of strep throat which caused some concern but she is doing better. Right now she is Winona for the weekend and will return for her appt. with her onc. on Monday. She had a CT scan on Friday, so they will look at the scan and see where we are at. She will likley have more chemo on Monday and head back to Winona after a few days on a semi-permanent basis after that. She is not doing as well as we would like but rehab says it's time to go home. Same old story with her eating and walking. We feel she is being overmedicated too so we are hoping they can find the right level of pain relief.
January 30: 25 years ago today Holly was also in the hospital having her only daughter, me. Today she is there again although the social worker called me today saying that baring any unexpected events, they feel she will go HOME. Great but scary news! The plan is for her to go to her Dad's house in Winona.
January 29: Woo hoo! Today mom walked almost 300 feet from the PT room to her bed. She is back at rehab making progress. She is getting good at putting on her own brace, although she needs help strapping it up. The doctor has changed her pain medication which has helped her work harder except she might be little too pain free...we are working on that. They expect she will have pain until her final back surgery is completed and healed. Her counts are down from chemo but generally she is feeling good. Her IV nutrition is reduced but nothing in the world will make her eat full meals voluntarily. There doesn't seem to be a good medical explanation for her eating problem, other than a sporadically unhappy gallbladder. She is working with OT to improve her skills at daily living and is on a regular shower schedule, a luxury she has not been well enough to enjoy before. Keep it up Cubby!
January 23: Things are going just fine. No infection after all, yeaaay! Same old stuff...Holly isn't eating too well due to nausea and she is getting up a bit too. They are talking about sending her back to rehab already. No idea how long it will take her to get her strength back to a level where she can safely leave rehab, maybe another month... if she works really, really hard. Let's hope!
January 20: Hol is feeling better, after a bout with what must have been the stomach flu. Her oncologist appointment went well...no new scans but he did say that the last scan show no affected lymph nodes/tumors (where she used to have many) and just one mass which he believes is only scar tissue/ dead connective tissue from her big "bulky" tumor. We thank God! Today she moved back over to the hospital for chemo, however her temp has been slowly rising all day. If you have been following her progress for awhile, you can guess that it is just time before the antibiotics will be flowing. As of yet, she has not had chemo... not sure if they will give it tonight or not. Providing no new surprises, the docs say it is time to get serious about eating to get off of the IV nutrition and go home. We all agree, however easier said than done. We are pushing for measurable progress every week...we just need our exhausted patient to do the hard work!
January 16: Holly has been very sick the past few days with flu like symptoms. She has recently had some abdominal pain in the area of her first surgery, something which has us very concerned. Due to feeling so terrible, she has not done any therapy or eating lately. She has an oncologist appt. today and I am assuming Dr. Okazaki will do a CT to see how things look inside. Originally, she was scheduled for chemo tomorrow but we will have to see how things go today.
January 13: No news is good news! Hol has been continuing to get stronger at rehab. She is now able to get in and out of bed by herself, walk with the walker when she feels good, change clothes with some assistance, sit up for longer periods of time, etc. Small victories add up! The next goal is for her to learn to put on her brace by herself. Currently, she is wearing the old brace due to a blister on her back but the hope is she will become more independent with the new brace. She has been eating much better than just a month ago, mainly bland foods like the ever delicious baked potato, milk, juice, soup and oatmeal all go down well too. Her TPN (IV nutrition) has been reduced and she hopes to get off of the TPN sometime soon. This stay has been better than her last and she feels she is getting better care this time around. At the end of this week she will once again go back to the old hospital for more Retuxin & CHOP while continuing PT to get strong and healthy!
January 6: Tomorrow Holly will move back across the river to Fairview Transitional Rehab, not her favorite place, but a good place to get stronger. The past few days have been quite rough as the steriod part of her chemo has ended, making walking and eating a big challenge once again. Her counts have been low from chemo but are rebounding. We are realizing that until chemo is over, she will continue to live this cycle of exhaustion. Hopefully, she will make some progress along the way. It will be a long journey of many, many months until Hol is better. It is extremely hard, but at least we are all in it together.
December 31: Holly is doing extremely well at the hospital! She has been walking the halls several times a day and finally can eat meals! The nurses and even the doctors were happy to see her again, although they want to see her home and healthy too. No unusual reactions to report either. Going home for a few days helped motivate her to work hard and reminded her how much she missed a normal life. It will take her many months to get back to her old self but our goal now is to increase strength, endurance and nutrition until chemo is over and the final back surgery can be completed. She is getting a new, more user-friendly brace this week too. Finally, her latest CT scan showed more improvement! 2003 will be a much better year!
December 23: Mom is in Winona staying with Casey and I at her Dad's house. So far, so good. No major problems. We have a nurse coming once a day to hook up the IV nutrition and change her PICC dressing. Each day is a struggle but she perseveres! 4 months plus in bed has made her extremely weak. However, seeing friends and family gives her reasons to fight. It is back to the hospital on Thursday, not a day sooner!
December 20: Holly will leave the hospital tomorrow to come to Winona and hopefully stay until the day after Christmas when she will return for more chemo! We are extremely happy and hope for a safe and healthy week!
December 16: Mom spiked a fever this weekend and tests show that she has pneumonia in her lower left lung and an UTI. They started her on Tequin, an antibiotic, last night. It is common for people to get this in the hospital due to more resistant germs combined with illness, but also more serious because of that fact. It appears to have been caught early although we are not sure what this means for mom's plans to come home on Saturday...tomorrow is her care conference but we will just have to wait and see what happens with the infection. Continued prayers are always welcome!
December 11: Holly was moved to Fairview Transitional Rehab today! This represents great progress! The past two days have been frustrating because she has been having stomach cramps so they gave her a drug to help the cramps but it makes her sleep all day. So...eating and PT haven't been happening! Overall, things are better. Rehab will consist of two sessions of Physical Therapy and two sessions of Occupational Therapy a day. The goal is to work hard (and stay awake) for the next 9 days to come home, returning after Christmas to the hospital for more chemo.
December 9: Thank goodness the situation did resolve itself. Hol is back on track and feeling fine. Apparently it was just "sludge", excuse the technical lingo, that backed things up. Mom's eating is improving and her counts are coming back up. Big relief!
December 7: The rollercoaster continues...Holly had been experiencing severe back pain and abdominal pain. Her skin and eyes have also turned yellow as her billirubin level is up. Ultrasounds showed her bile ducts are dilated, often associated with gallstones. However, no stones are seen and the latest CT showed her liver to look normal. A back x-ray looked good too... they believe the back pain is from the G-CSF shots (shots to increase white blood cells while on chemo). Today she is feeling slighty better, no pain, but extremely tired. We hope to avoid surgery because her blood counts are at their lowest point for the next few days and that could make even routine surgery dangerous. She was unable to get out of bed the past two days because of pain but did get up today with PT. The doctors hope that this condition will resolve itself but they will keep a close eye on her.
December 4: Holly finished her second round of chemo yesterday & is doing great! Actually, she seemed almost giddy this morning saying she had the best night of sleep and is ready to challenge herself today. She continues to be very tired but that is expected with chemo. She is eating a little better and we really feel that within the week she may be moved to Rehab. Her IV nutrition is being reduced and she is on fewer medications than before. Things are looking brighter for her to come home for her mom's memorial service and Christmas!
A very special thanks to the Winona Clinic staff for the generous donation from your fundraiser for Holly!
November 28: Happy Thanksgiving! Yesterday mom had more chemo... so far, not too terrible. She hasn't had many problems except for some confusion, being emotional from the steriods and being tired. Her doctors tried a new steriod, Decadron, instead of Prednisone, along with a different dosing schedule in the hopes that she will tolerate it better than last time. We hope she can get the full dose but they promised her they would not let her zone out for days like last time. Today was a bit rough but she was doing better tonight. She also got two more units of blood to help keep her levels up and give her energy because her hemoglobin is always low. Today we are very thankful to have her with us, continually getting better every day.
November 22: Holly won't be getting chemo for a few more days at least. The doctors want to be sure the infection is under control...her temp has been normal for a day. She has no tubes in now because one fell out and they took the other one out. The fluid in the pleura is still there, so we are waiting to hear what the next step is. The great news is that her CT scan showed significant shrinkage of her lymphoma! Dr. "Skippy" Anderson said he was "impressed with the progress". She is feeling good and has been walking across her room with a walker twice a day and sitting up more too.
November 18: Mom is still running a low-grade fever but it's not the 103 she had the other day (keep your fingers crossed). Chemo is on hold until she has no fever for a day or two straight. The cultures of her blood and the "gunk" from her lung have both come back negative...a sign that the antibiotics are working. They are checking to make sure she doesn't have any new bugs. It is very important to stay on track with chemo, but at this point, her docs feel that waiting a few days won't hurt and the risks of doing chemo with an active infection are big. She is feeling good, just very, very tired and weak. Her eating had been improving last week, but being back on IV antibiotics makes her feel sick. She has been getting up with PT each day and even talking a few steps, trying to get stronger. Case finally got the laptop up, so they spend each afternoon reading emails (she had over 2,000) and this weekend, Holly wants to Christmas shop online.
November 16: Hol has been doing fine but this weekend she had a couple chest CT scans which showed fluid around the lung and she had to have a tube readjusted once and today another one put in. Tonight she spiked a high fever...it may be from the new tube kicking up some germs. They have also been slowly taking her off some antibiotics or switching her to oral meds. Let's hope they figure out what is going on with her now and she recovers quickly. Chemo is scheduled for Tuesday but IF this is a new infection, then...!!!! We have been trying to get a laptop working for her but the tech team (Casey, Jake and Dale) had no luck! Mom still has hair but got a major haircut because it is shedding and tangling big time. After the next chemo, it should all be gone. We are HOPING to have her home for Christmas and Grandma's memorial service.
November 11: Sadly, Holly's mom Barb, passed away last night in her home. Grandma Barb has been fighting throat cancer for a few years, but had become really sick in the last year. Holly's sisters, Jill, Tracy and Wendy were with Barb when she passed very peacefully. Holly was able to talk with her mom on the phone yesterday and her sisters said that Barb smiled when she heard her voice. This is a hard time for our family but we all feel comforted that Grandma Barb's suffering is over and she is with God. Grandma told her nurses that she even though she was praying for Holly on Earth, she knew would be able to do a lot more for her on the other side. We feel lucky to have Grandma Barb, Papa Wib, Grandma Dorothy and other loved ones rooting for mom from heaven. We love you Grandma Barb and we miss you! The date of the memorial service is yet to be determined.
Holly is doing well... back to her old self. She is running a low-grade temp and she is still on a lot of antibiotics. Today, she will resume PT and we pray for positive results of her chest CT scan. There is talk of moving her to rehab at Fairview Riverside but she may hang out at the University hospital for one more round of chemo (scheduled for November 19) before going to rehab.
November 7: After 3 days of not talking, last night Holly started communicating again. She doesn't remember anything that happened since Saturday afternoon. Her MRI looked normal and the spinal tap had been delayed, so she avoided that. She feels pretty crappy and very, very tired. Her blood counts are very low so she is getting more blood tonight. Today she got up with PT but her blood pressure dropped... this afternoon they will take it easy and just work her legs.
November 4: Well, maybe the CHOP didn't go so well after all. Cubby had a miserable weekend! We think that the P in CHOP, Prednisone, gave her something called steroid psychosis. Holly has been experiencing emotions ranging from being confused, agitated, sad, despondent, scared, etc. She got out of bed twice without her brace and ripped IV lines out of her arm twice. The doctors are checking to make sure there is nothing wrong (tumor, infection, bleed) with her brain. Her brain CT scan looked normal, but today they are doing a brain MRI and a spinal tap. Her stomach has been upset and she can't take anything by mouth, so she missed medications all weekend. Needless to say, we are trying to keep someone with her at all times to keep her safe. They are trying to keep her sedated with Benadryl until it is determined exactly what is wrong. She seems to know we are there but just feels too sick to interact. We pray that this is a medication problem that will clear soon.
October 31: Happy Halloween! Chemo went great! Holly felt just fine this time around and is very happy to be treating the lymphoma. Her main goals now are to stay infection-free, to work with PT on getting strength back in her legs and to eat again. It will take time for all of these to happen, but that is okay! She is not looking forward to losing her hair... her sister, Tracy, bought her some lovely turbans to try out. Her other sisters, Jill and Wendy, are nice too, although they have not bought her any turbans or other head coverings as of yet. There, your names are on the webpage.
October 29: Holly had two bone marrow biopsies drawn today from both hips in order to determine a baseline. It went well and she was told she has "strong bones". Way to go, milk drinker! The doctors have determined that she no longer has an active infection. The cultures from the fluid her tube is draining have come back negative and her fever has been gone or just low-grade. Lastest CT scan showed no change. So...tonight she got a chemo regimen called CHOP. It is our hope that after a few days she may feel better as the chemo fights off the tumor nodes in her abdominal cavity. She will be more prone to infection in the next week but they are giving her a medicine to boost her white blood cell count. Please help support Holly during this yucky time as she starts this next leg of the fight!
October 27: Hol had a rough weekend but managed to get up each day. Her nausea is bad. Tonight she is getting another blood transfusion to give her more energy and tomorrow is another CT scan. We should know more after that.
October 25: A new tube is in to drain the empeyema which keeps building pockets and insulating itself, making the drain and antibiotics ineffective. So, they are flushing her tube with a clot busting agent. Her temp is normal and she feels better. Today Holly got up twice, sitting up for over an hour the first time and 30 minutes the second. Tomorrow she will visit with her dog and take a stroll in the wheel chair. Her onc. reassured her that since the lymphoma is not growing, she is not losing time with treatment. Of course, we all hope to start chemo very soon but there is no emergency at this point. She must be rid of the infection first. The hope is that she will move over to Fairview Riverside to continue PT and rehab. I will keep you posted. Cubby says hi!
October 22: Holly is having another tube put back in today because the CT showed fluid reaccumulation in a pocket around her left lung. We knew this might happen as her white blood cell count was up and so was her temp. Hopefully, this will be a small tube which will fit under her brace. Other than that, the CT looked good (lymphoma is not growing). Let's hope she is still able to sit up and the tube drains the fluid ASAP! Holly hates getting the tubes in because they hurt! However, they can't hurt as bad as the time she put Icy Hot on her daughter's sunburn. Remember that, Mom?
October 20: Holly sits up, she even stands. It was just for a minute, but it was good to see. Holly's room is a suite which overlooks the Mississippi, so she was able to sit up to see the snow, yes snow, falling on the river. It was a perfect day for a nap, thanks to the medications. Her temp is doing better, but not perfect. Tomorrow she has another CT scan to check on things inside. I heard that if she buys 20 CT scans, the next one is free. She should be close! We are hoping and praying for healing and continued progress.
October 19: For the first time in over 5 weeks, Holly sat up! The past three days PT has helped her sit, for up to 15 minutes. She does well log rolling to get the brace on. She said it feels good to be up and moving. She has had a fever on and off for a few days but so far the X-rays have looked good. She is feeling better, but still won't touch food. We are very happy that things are moving forward!
Please remember Barb, Holly's mom, in your prayers.
October 16: After looking at the CT scan, the docs decided to take out all 5 drainage/chest tubes...yahoo! This is a big step because now she can put on the brace and start sitting up. Hopefully, the infection is all gone. Holly also has a skin rash caused by an allergic reaction to a medication. She still feels very tired, sore, and sick to her stomach, but that is somewhat normal. All in all, it was a huge step forward today! The surgeon said she made "great progress". Hol was very happy to hear about everyone visiting her webpage and looks forward to seeing it herself.
October 15: After feeling sick for months, on August 9, Holly (a.k.a Cubby) underwent surgery to remove a tumor...it was a 20-lber. They removed her spleen, kidney, and part of the pancreas, stomach and diaphragm. She came through the surgery very well and the diagnosis came back as Non-Hodgkin's Lymphoma, aggressive, large, B cell. Her oncologist is optimistic about treatment of the cancer using a chemo regimen known as CHOP and a biological antibody called Rituxan. Unfortunately, Holly was only out of the hospital a few days when terrible back pain sent her to the ER. This time it was found that the tumor damaged her L1 vertebrae and she underwent another major surgery to replace that vertebrae. Since this surgery made her spine unstable, she is only able to get out of bed wearing a TLSO full body brace. She will need another lesser surgery later to brace her spine in place. However, some unwanted complications, including fluid and infection in her lungs, have kept her in bed and in the hospital for the past month, as she is unable to put the brace on with the tubes, drains and big incision. Because of the infection, she can't start chemo, although she has finished 4 treatments of Rituxan. Fortunately, the lymphoma, while still present, has been behaving itself. The goal is to get her healthy in order to start chemo soon. The doctors and nurses are working very hard to help her beat this infection and get back on the road to recovery. Obviously, mom is getting very weak in bed and eating has become very hard. She is getting nutrition through her IV (TPN) but is trying to work on eating real food. Her spirits are usually up and she is determined to get out of there! This whole ordeal has required so much patience and faith on her part. Please keep Holly in your prayers as she recovers from surgery and begins cancer treatments.
Our family is so thankful for all the great medical staff who have been caring for my mom including (in order of appearance): Dr. Shepard, Diane and Betty, Dr. Dunn, Penny and Marie, Dr. Trentniyak, Smiling Dave Larsen, the nurses of 6B, especially Bethany, Dr. Okazaki, !! Dr. Raj Kasthuri!!, Dr. Skubitz, Dr. Ogilvie and Dr. Trish, Dr. Maddeus and co., Dr. Michaela, Dr. Yee, Dr."Skippy" Anderson, Mary Casey, and all the nurses and aids on 7D, especially Erin, Mary, Sandi, Nicole, Lisa, Mike, Cat, Jamie, Eileen, Katie, Anna, Steve, Lyle, and Kevin, and the PT Team(Christie, Carla, Karla...). We have witnessed miracles and we thank God and continue to ask for His support and love. We thank all the friends and family who have reached out to my mom through visits, cards, phone calls and gifts. Your kindness helps her get through this.
** Mom got great news in the results of her bone marrow biopsy- there is no cancer in her bone marrow**
