Debbi’s Journey has moved into hospice mode. Reading that sentence a year ago would have been very scary because I did not really know what hospice meant. I thought it only meant that the patient was on their last legs. Technically, here in Cape Cod at least, it means that there is an expectation that the patient has a survival time of less than six months. That being said, I have heard stories about individuals who have lived years under hospice care and have heard about some hospice patients that have even taken vacations and cruises with their families. Further, the power to return Debbi from hospice care to palliative care and even to aggressive chemo / radiation / etc. lies with us. A quick phone call to Dr. Lovett removes us from hospice and yet the same nurses provide very similar benefits under the heading of palliative care.
Debbi’s status changed from palliative care to hospice care following her visit on Friday with Dr. Lovett and his team of skilled nurses. Debbi has been on palliative care and has been receiving Vancomycin IV and Augmentin PO under the care of the Visiting Nurses. During the visit with Dr. Lovett, we reviewed a Chest XRay taken 30 minutes before the appointment and happily noted that the result showed no appreciable change from the XRay of 4/2 and also no change from the XRay of 3/30. This was definitely good news because we do not see rapid advance of the cancer and we do not see rapid transitioning of the spiculated densities (or maybe spiculated cells… I am not sure of the proper designation) into the cavitated nodules. Thus, we still have hope the the one or two cavitated nodules that were seen resulted from a pneumonia process and not from a cancer process.
With that good news, you may ask, “why the transition to hospice?” The reason is that the infection has left Debbi very weak. To subject her to more chemo (a toxic agent afterall) in a weak state, is very dangerous. Choosing the hospice designation expands her home care possibilities and gives her a better possibility to improve her health and her strength. Later that day when the visiting nurse came by to adminster the IV antibiotics, Debbi signed the hospice papers as well as a Do Not Resucitate order. Hospice was contacted with her medication list and notified us that they will now be providing all her medications directly. No longer is there a need to go to the pharmacy to fill her prescriptions. I asked if they would take back (and perhaps give us a credit? ) on the many unused pills sitting back in the NYC apartment? Their expected reply in the negative leaves us either with disposal or trying to sell them on our own. A blurb on the Police Blotter page of the NY Post a few months ago concerning someone caught trying to sell a cache of Oxycodone (Debbi’s pain medication for most of the past year) indicates that simple disposal might be the best choice.
Passover Seders and Shabbos were all the more special because we truly appreciated Debbi’s presence at the table and the messages of love and caring that she shared with each of us. This was due to her inner strength assisted by the fact that one of the Visiting Nurses responded to our observation that the combination of Oxycodone/Oxycontin was too strong by suggesting that we should switch to the Morphine family. The transition was made to a fast acting Liquid Morphine (with a generous dosing range of 5-20 mg for break through pain… we have been using 10mg as necessary) coupled with the longer acting MS Contin 15mg every 12 hours. MS Contin is a pill which delivers Morphine in a time-release fashion. Thankfully this combination seems to be working well. Debbi was very lucid and explained her thoughts clearly. While her message brought tears and joy, at least she was able to share her feelings without being reduced to incoherent speech by drugs that were too powerful for her metabolism. Thus Shira & Leo, Josh & Katherine, Aaron & Stephanie, Rea & Shuie & Yonah, and I were privileged to be together with our favorite family member and to share her LOVE at this time in such a meaningful way.
Early this morning, Debbi awoke with a 102.9 fever. Any blog follower would know that this elevated temperature would have set off a trip to the hospital where Debbi would have been evaluated and then given saline and IV antibiotics. Instead, I gave her 1000mg of Tylenol, started the Vancomycin IV (after removing it from the fridge and bringing it slowly to room temperature) and then called the Visiting Nurses for further guidance. I was instructed to ensure that she was not under layers and layer of blankets and to use cold compresses and that a Visiting Nurse would check in later and be on standby if the fever did not break. The fever broke eventually and Debbi was far more comfortable staying at home.
A FedEx package arrived for Debbi today from the Hospice organization consisting of a Medicine Chest to be used only under the instruction of a Visiting Nurse. Had the chest come earlier, I might have been instructed to administer a different drug or to follow some other procedure. The ability of getting rapid treatment is certainly a blessing.
In addition to watching her temperature, under Shira’s guidance, we purchased an oximeter. This consists of a spring device which “clamps” over ones finger. Two wavelenghts of light from harmless LEDs shine through the finger and the differential absorbtion can be used to measure the percentage of oxygen carrying ability of the hemoglobin. This value is displayed along with the pulse and a confidence light to assure the operator that the unit is displaying a valid reading. Along with the fever, we noticed that Debbi’s oxygen level was at 74% when 88% in a hospital would require use of oxygen. Thanks to hospice, we have a oxyengenation machine and 3 standby bottles of oxygen. Shortly after adjusting the cannula to Debbi, we were reading oxygen levels of 94% and eventually as high as 98%. Much of the day now she is wearing the oxygen cannula and is getting used to the noise of the compressor. Thankfully, it is not nearly as loud as the HEPA filter in our hospital room at Sloan Kettering.
Debbi was able to go for a short walk to a window by the front door where she was able to see the new buds beginning to open on the hydrangea bushes near the front of the house. It brought her pleasure and we are hoping that she will be privileged to witness their full growth into pom poms this season and indeed for many seasons to follow.
Hoping all our readers had and are continuing to have a Chag Kasher v’Sameach.